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Introduction
i
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
ii
Copyright © 2011 by SKF Books, Inc. All rights reserved.
No part of this book may be reproduced in any form or by
Any means without the prior written permission of the publisher.
Any errors and omissions are the responsibility of the author.
Library of Congress Control Number: 2010919311
Freeman, Sabrina Karen, 1958 –
The complete guide to autism treatments. A parent’s handbook:
Make sure your child gets what works! / Sabrina Freeman
Includes bibliographical references and index.
ISBN 978-0-9657565-7-0
Autism in children—Treatment. 2. Autism—Treatment. I. Title1.
RJ506.A9F725 2011 618.92’85882’06 C2011-900064-9
Published by:
SKF Books, Inc.
1050 Larrabee Avenue #104-357
Bellingham, WA 98225
Printed in the U.S.A.
Second Edition
Disclaimer: The cover photo is being used for illustrative purposes only and any person depicted in that
photo is a model.
Introduction
iii
Contents
Foreword ..................................................................................... ix
Introduction .............................................................................. xix
Section One: What Works and What Doesn’t? ............1
Cost of Autism Treatment .....................................................................3
Half-baked Research ............................................................................4
Behavioral Therapies ............................................................................5
What is Behaviorism as it Applies to Autism ...........................7
What is Applied Behavior Analysis? .............................7
What is Intensive Behavioral Treatment? .....................9
Is the IBT Program Home-based or Center-based? ......9
•Home-based Intensive Behavioral Treatment .......................11
•School-based Intensive Behavioral Treatment .....................25
•OffshootsofIntensive Behavioral Therapies........................39
-Pivotal Response Training and the Natural Learning
Paradigm ....................................................................39
-Positive Behavior Support .........................................53
-Verbal Behavior Therapy ...........................................61
-Fluency Training ........................................................67
OtherSchool-basedTherapies(non-behavioral) ................................81
•TEACCH(TreatmentandEducationofAutisticand
RelatedCommunicationHandicappedChildren) ................83
•ThePlayschool(ColoradoHealthSciencesCenter) .............95
•Giant Steps ..........................................................................105
•The Higashi School/Daily Life Therapy .............................113
•Walden Preschool ...............................................................121
1.1
1.2
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
iv
Child-lead/Parent-facilitated Therapies ............................................ 131
•Floor-Time(Greenspan’sDevelopmental,Individual
Difference,RelationshipModel-DIR)..............................133
•OptionsInstitute/Son-RiseProgram.......................................143
•RelationshipDevelopmentIntervention(RDI)..................151
•The Learning to Speak Program ............................................ 159
Biomedical Therapies ........................................................................ 167
•Diet/NutritionTherapy(GlutenandCasein-freeDiet)........169
•Chelation Therapy ................................................................. 183
•Intravenous Immunoglobulin .............................................. 191
•Secretin ............................................................................... 197
•Vitamin B6 and Magnesium ................................................ 205
Speech and Language Therapies ....................................................... 217
•Fast ForWord Program ....................................................... 219
•The Hanen Method ............................................................. 227
•Lindamood-Bell Learning Processes .................................. 235
•TheSCERTS Model ........................................................... 241
Miscellaneous Therapies .................................................................. 249
•Art Therapy ......................................................................... 251
•Auditory Integration Training ............................................. 255
•Cranio-sacral Therapy .......................................................... 267
•Dolphin-assisted Therapy ....................................................... 273
•Exercise Therapy ................................................................ 281
•Facilitated Communication Training .................................. 289
•Holding Therapy ................................................................. 309
•Music Therapy .................................................................... 317
•Pet-facilitated Therapy .......................................................... 327
•Sensory Integration Therapy .............................................. 335
•Vision Therapy ................................................................... 349
1.3
1.4
1.5
1.6
Introduction
v
Section Two: How Do We Know What Works and
What Doesn’t ............................................................................. 359
Why care about science? ................................................................... 362
Why we can’t always rely on experts? ............................................. 363
•Experts”donotalwaysknowaboutscience ............................ 363
•Theymaynotvaluescience ..................................................... 364
•Advancementtrumpsqualityconcerns.....................................364
•Someexperts’motivesarenotalwayspure.............................365
•Thescienticmethodversuspseudo-science ........................... 366
Using the scienticmethodtoprotectyourchild.................370
What if the treatment method is too new for
data collection? ..................................................................... 370
•Whataboutanecdotes? Can we use them at all? ..................... 371
•Weneedtocareabouttheory ................................................... 373
What is a theory? .................................................................. 374
Good research is motivated or driven by theory ................... 375
How do we generalize results in autism research? ............................. 378
Using science to move closer to the truth ......................................... 379
•Testingtheory ........................................................................... 379
•Experiments are not optional .................................................... 382
•Peerreview-necessarybutnotsufcient................................382
•Uncoverthefunding source for the study ................................ 383
•Findingthepeer-reviewed journal articles ............................... 386
• Isthejournal peer-reviewed?.................................................387
Analyzing a study ............................................................................. 389
•Howmanygroups are there in the study? ................................ 389
Is it a Between-Subjects Design? .......................................... 390
Is it a Within-Subjects Design? ............................................ 395
Is it a Between-Within Subjects Design? ............................. 398
Is it a Factorial Design? ........................................................ 401
Is it a Single-Subject Case Design? ...................................... 403
What’s the problem with Single-Subject Case Designs? ...... 406
2.1
2.2
2.3
2.4
2.5
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
vi
•Howmanychildrenshouldtherebeineachexperimental
group? ...................................................................................... 408
•Whatistheidealnumber?........................................................408
•Whatisacceptable?..................................................................409
•Howarechildreninastudyassignedtothe experimental
groups? .................................................................................... 410
•Whatisbeingmeasuredandhow?...........................................413
Autism(theDependentVariable)..............................................413
Treatment(theIndependentVariable)....................................415
•Whocollectsthedata? .............................................................. 418
•Whoadministersthetreatment? ............................................... 420
•Didresearchresultshappenbychance?....................................421
•Isthestudybiased and how can bias be avoided? ................... 422
Bias type 1: History ............................................................. 422
Bias type 2: Maturation ....................................................... 423
Bias type 3: Treatment contamination ................................. 423
Confounding variables in general ..........................................425
How researchers mistakenly ruin their own
well-designed studies ............................................................ 426
How can bias be avoided? ................................................................ 428
When is it time to apply the results to children? ................................ 429
•Istheresearch far enough along? ............................................. 430
•Testingonhumansubjects.......................................................431
2.6
2.7
2.8
Introduction
vii
Redagsforquackery......................................................................432
Conclusion ........................................................................................ 435
Afterword........................................................................................ 437
2.9
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
viii
Foreword
ix
Dr. Richard Foxx, Ph.D. BCBA-D1
Few conditions have been as fraught with fad, controversial, unsupported,
disproven, and unvalidated treatments as autism (Foxx, 2008). The
underlying reasoning for this relates directly to science being misunderstood
or ignored by parents, professionals, and paraprofessionals. Many people
simply do not understand how science works, and this includes any parents
andparaprofessionalswithnoscienticbackground.Manyprofessionals
also do not understand science, typically because their education featured
noscientictrainingoritwasgreatlydeemphasized.Unfortunately,this
is the case for many of the professionals who work directly with children
with autism. There are other professionals who understand science but
choose or have chosen to ignore it for professionals or monetary gain.
Sabrina Freeman (2007) recognized all of these factors and decided
to do something to help. The result is The Complete Guide to Autism
Treatments: A Parent’s Handbook: Make Sure Your Child Gets What
Works! Although the book is written for parents, professionals will greatly
benet either because they will now understand how to evaluate the
science behind treatments or have a reference to give to parents. The book
also would serve nicely in a graduate course on autism, ethics, or behavior
analysis. The piece de resistance is that Freeman is both the mother of a
child with autism and an accomplished social scientist with a PhD from
Stanford. Two of her other books, Teach Me Language(Freeman &
1 Reprinted by permission, The Behavior Analyst, Spring 2010
Foreword
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
x
Dake,1997)andScience for Sale in the Autism Wars(Freeman,2003),
are directly related to autism and attest to the depth of her scholarship.
Freeman’s gift is that she writes about what some view as complex
subjects in simple understandable language. Indeed, she points out that
thescienticmethodisnotdifculttounderstandandthatknowledgeof
it permits rational decision making when it comes to evaluating the next
treatment or purported cure. Freeman’s objective is to protect thousands
ofchildrenfromquackerywhileprovidingparentsandprofessionalswith
evaluative tools for judging the effectiveness of a treatment.
Thebookisorganizedintotwosections:“WhatWorksandWhatDoesn’t”
and“HowDoWeKnowWhatWorksandWhatDoesn’t.”Section1is
designed to produce informed consumers who will seek a treatment for
theirchildrenbecausetheyknowithasscienticvalidity.Anyonewitha
goodbackgroundinsciencewillndthissectionwelldoneandextremely
helpful. Those with little background in science are encouraged to read
Section2rstinorder to have the backgroundtofullyappreciatethe
in-depth evaluations available in Section 1.
In Section 1 every major treatment option is exposed to the following
questions:Whatisit?Whatevidencedopractitionershavethatthisreally
works? What does the therapy actually look like? Would I try it on my
child? What else do I think? What additional studies would I like to see
theresearchersdointhiseld?Whoelserecommendsfororagainstthe
treatment? So you are still on the horns of a dilemma? What’s the bottom
line? The answers are typically spot on, in this reviewer’s opinion, and
are consistent with Freeman’s reputation as a tireless advocate for the
rights of children with autism to receive science-based treatment. The
literature review is exhaustive.
Under behavioral therapies, Freeman examines applied behavior analysis,
intensivebehavioraltreatment(IBT)thatishomeorcenterbased,school-
based IBT and what she refers to as offshoots of IBT, including pivotal
Foreword
xi
responsetraining andthe natural learningparadigm (PRT/NLP),positive
behavior support (PBS), verbal behavior therapy, and uency training.
Freeman reports that she implemented an intensive home-based behavioral
treatmentprogrambasedon the pioneering workofIvarLovaas(Lovaas,
1987)andthatherdaughter,whoisnowan adult, made incrediblegains.
That said, she cautions readers that her anecdotal reporting of this outcome
should not sway them to use the method, even if it comes from someone
who respects science. Rather, she states that what should be convincing is
the “abundance of scienticevidencebehindthemethod”(p.18)anditwas
just such evidence that led her to choose to use IBT with her child.
High-qualityschool-basedIBTprogramsaresupportedbyscienticresearch.
Althoughallchildrenbenetedfromtheseprograms,themostsignicant
gains were made by children who began treatment before the age of 5 years.
Had she lived in New Jersey when her daughter was young, Freeman would
have seriously considered sending her to the Princeton Child Development
Institute. The offshoots of IBT receive a fair evaluation based on the
literature to date, and the kinds of studies suggested for researchers working
inthevariousareasareexcellent.Freeman’sreviewndsPRT/NLPtobe
promising, but it does not have enough research evidence to suggest that it
is globally effective in ameliorating the condition of autism. Based on the
scienticresearchtodate,verbalbehaviortherapyisdescribedasanemerging
treatment but not one that should be applied solely to ameliorate the symptoms
orconditionsofautism.Asimilarbottomlineisgivenforuencytraining,
in that there is limited evidence that points to its appropriate use for certain
deciencycharacteristicsofautism.
Freeman’s bottom line on PBS is that “there is no evidence to conclude that
PBSisanythingmorethanaphilosophyratherthanascience.Consequently,
there is no evidence to demonstrate that PBS ameliorates the condition of
autism” (p. 59). She urges PBS researchers to abandon the antiscience,
anti-intellectual discipline they have developed and return to the eld of
applied behavior analysis where they can compete with behavior-analytic
researchers and “have their PBS research properly scrutinized and evaluated
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
xii
bytheirABAacademicpeers”(p.58).HernalpointonPBSisthatits
literature makes autism appear to be an entirely different disability. In
the PBS autism world, children “seem to be very mild, and the behavior
problems are all easy to control, as long as the environment is ‘re-
engineered.’ Children with self-injurious behavior do not seem to be a
challengeforthisgroup”(p.58).Hercaveatisthatperhapsthechildren
inPBSstudiesare“notclassicallyautistic”(p.58).Afterreviewingthe
literature and based on living in a region where PBS is used extensively
by school districts and with governmental support, Freeman expresses
heropinionthat“positivebehavioralsupportisaverydangerouseld
forchildrenwithautism”(p.56).HerreasoningisthatPBSisakindof
religion of political correctness that “denies children with autism access
toproven, science-based treatmentmethods” (p. 56). She evennds
theterm“positive”attachedtobehaviorsupportasoffensivebecauseit
“carries a presumption that the PBS practitioner is different and apart
fromhis‘evil’ABAbehavioristcounterpart”(p.57).
In the “Other School-Based Therapies” section, Freeman reviewed
TEACCH, the Colorado Health Sciences Center playschool, Giant
Steps(Canada),Higashi/dailylife therapy,andtheWaldenpreschool.
Her bottom line is that there is not enough research evidence to date to
conclude that TEACCH is an effective treatment or that the Playschool
autism intervention substantively improves the condition of autism. She
ndsinsufcientevidencethattheHigashischoolorWaldenpreschool
have an effective curriculum for decreasing the symptoms associated
with autism or treating and educating children who have it. She found
no evidence in support of Giant Steps.
The“Child-Led/Parent-FacilitatedTherapies”sectionincludestheoor-
time (Greenspan/developmental, individual difference, relationship)
model (DIR), Options Institute/Son-Rise program, relationship
developmentinterventions(RDI)andtheLearningtoSpeakprogram.
Twotherapies,DIRandRDI,hadnotgeneratedenoughscienticevidence
to conclude that they were effective treatments for children with autism.
Foreword
xiii
There was no evidence in support of Son-Rise and the Learning to Speak
programs as effective treatments. Freeman had personal experience with
DIR a number of years ago, because she chose it for her child when she was
rstdiagnosed.TheDIRphilosophy,whichturnseverythingthechilddoes
into a social interaction, was personally very appealing, and this treatment
was being offered by the psychiatrist who had diagnosed her daughter. Soon
after, Freeman abandoned DIR because, despite its personal appeal, there
were no data to support it. Her bottom line was “my child was wasting her
timeandIwaswastingmymoney”(p.139).
The biomedical therapies are familiar to many parents of children with autism.
They include the diet and nutrition therapies of gluten- and casein-free diets,
thecandidadiet,thenutritionaldeciencydiet,theketogenicdiet,chelation
therapy, intravenous immunoglobulin therapy, secretin therapy, and Vitamin
B6 and magnesium therapy. Although these theories have been around for 30
years,nonehaveanyindependentscienticsupport.Untilthereis,Freeman
regards their use as pure experimentation on a child.
Chelation therapy consists of removing harmful metal toxins from the
body by introducing chelating agents into the body. These bind with the
metal ions and then are expelled. Chelation is a recognized treatment
for children with lead poisoning but not for children with autism, who
do not have chronic heavy metal toxicity. Although many fad treatments
are costly in terms of money and time lost, chelation can lead to horrible
medical complications, including death. Freeman’s bottom line is chilling.
Chelating a child with no signs of heavy metal poisoning is engaging in
high-risk experimentation. There is no evidence to support chelation as
an effective therapy for children with autism.
There is not enough evidence to support any type of diet and nutrition therapy
as an effective treatment for improving the symptoms that characterize
autism. Unfortunately, parents are drawn to these approaches because they are
somethingtheparentcancontrolandfollow,andtheytwiththeparent’srole
of nurturer and provider of sustenance. Joining diet and nutrition interventions
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
xiv
as pure experimentation are intravenous immunoglobulin therapy, secretin
therapy, and Vitamin B6 and magnesium therapy. Although Freeman
is never shy about expressing her opinion based on her review of the
literature, she always provides a list of public and private agencies that
recommendagainstatreatmentorstatethatitfailedthescienticversion
of the sniff test.
The speech and language therapies include the Fast ForWord program,
the Hanen method, Lindamood-Bell learning processes, and the SCERTs
model. None of the four have any evidence to support their use as
effective treatments to improve the language impairment associated with
autism or ameliorate its symptoms. Freeman would especially like to see
the developers of the SCERTS model test their protocol against its main
competitor, intensive behavioral treatment. She makes this suggestion
for a number of therapies, especially those that are critical of intensive
behavioral treatment.
The miscellaneous therapies section is a veritable rogues’ gallery. All
of the classic fads are present, including auditory integration training,
craniosacral therapy, dolphin-assisted therapy, facilitated communication
training, holding therapy, sensory integration therapy, and vision therapy.
Othersonthelistincludearttherapy,musictherapy,andpet-facilitated
therapy. Because art and music therapies are regarded as relatively
harmless and not prohibitively expensive, most professionals tend to
give them a pass when harmful interventions are discussed. Art therapy
has no evidence of support, and there is not enough evidence for music
therapy to be considered an effective treatment for the symptoms of
autism. Freeman recommends removing the term therapy from music,
and I would add art. Some children with autism enjoy music and art,
and they can be used as reinforcers and for training in leisure activities.
In this limited role, both can have a place in a child’s program.
Although a dolphin ride may be reinforcing for a child with autism at
theDolphin Center ($2,000per week for1to 3weeksof treatment),
Foreword
xv
thereisnoscienticevidencethatitisaneffectivetreatment.Thistypeof
therapytsinthecategoryofthosethatareessentiallyignoredbyscientists,
because it is seen as not harmful but simply expensive. And, it is not the
type of day-to-day therapy that would replace an effective intervention like
applied behavior analysis. It is best used by parents who have money and
like salt-water vacations.
Freeman’s advice regarding pet-facilitated therapy is that “there is no
downsidetoowninganobedient,lovingdog”and“theexperiencemaybe
greatforyourchild; however,donotexpecttherapeuticresults”(p. 332).
Given that there is insufcient evidence to conclude that this therapy is
effective, a dog from the pound will serve as nicely as a costly, specially
trained therapy dog.
Vision therapy and craniosacral therapy are not commonly used for individuals
with autism, although they are recommended for other conditions, ailments,
diseases,anddisabilities.Thereisnoevidenceorinsufcientevidenceto
recommendeitherforautismoranyotherproblem.Quackwatch(aleading
Web site designed to expose harmful therapies) has craniosacral therapy
on its list of nonrecommended treatments. The use of vision therapy for
children with learning disabilities, in the form of eye exercises or specially
tinted glasses, is not supported by any pediatric or pediatric ophthalmology
professional academy.
Much as been written criticizing and condemning auditory integration
therapy, facilitated communication training, holding therapy, and sensory
integrationtherapy(Jacobson,Foxx,&Mulick,2005)andFreemancontinues
the practice. These therapies are particular insidious because they take
valuable time away from effective therapy and are highly seductive for
parents who desperately want to help their children with autism. Auditory
integration therapy is not only ineffective; it can be very costly. I know of
several situations in which parents who could ill afford to do so have spent
thousands of dollars on this treatment. Holding therapy is psychoanalytically
based and has followed the general course of psychoanalysis in the U.S.,
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
xvi
which is to say that it has fallen out of favor over time and is most likely
to be practiced or implemented in New York City. It has gone the way
of Bruno Bettelheim, refrigerator mothers, and the notion of a child with
autismhaving“attachmentissues.”
Sensory integration therapy has been a boon to occupational therapy,
because the underlying premise is that autism is a form of sensory
dysfunction.Althoughthereislittleornoevidenceregardingitsefcacy,
countless children with autism receive it in school as a legally mandated
part of their individualized educational program. Parents like it because
a sensory intervention that is designed to address a child’s neurological
needs has just the right amount of mind-body feel. Children seem to like
it because having a perky occupational therapist brush your arms, push
youonaswingormerry-go-round,orsqueezeyourarmsisaprettygood
waytospenda“treatmentsession.”
In the hall of shame of fads and autism, nothing ranks higher than
facilitated communication. This therapeutic intervention is proof positive
that H.L. Menken had it right when he said that “No one ever went broke
underestimatingtheintelligenceoftheAmericanpublic.”Itwouldbebad
enough if facilitated communication were simply worthless and costly,
but it also carries risks for parents and guardians, given the number of
them who have been falsely accused via facilitated communications of
sexually molesting their children and charges. Anyone whose child is
receiving facilitated communication is just a disturbed facilitator away
from being charged with a sex crime.
Onapositivenote,thereissomeevidencethatexercisetherapymayhave
some limited, short-term effect on the stereotypic behavior of individuals
with autism. And, no one can argue that engaging in exercise is not
good for all of us, especially those prone to obesity. Freeman endorses
incorporating exercise into a child’s daily life, but cautions that any
programmatic efforts should involve a behavior analyst, objectives, and
some data monitoring so that valuable therapeutic time is not wasted.
Foreword
xvii
Section 2 provides the basic rules and tools that enable one to evaluate the
autismtreatmentsdescribedinSection1.Freemangoesbeyondthescientic
method to look at how science is funded, how bias can slip in, the politics
of research, and what constitutes pseudoscience. Her goal in this section is
to inoculate parents from incompetent researchers or illegitimate purveyors
ofautismtreatmentinordertoprotectthechildrenfromthequackerythat
is pervasive in autism.
Freeman meets this goal admirably. She begins the section by asking “Why
careaboutscience?”followedbyadiscussionof“expertsandresearchers”
that the readers of this journal will recognize as a Brandisian lifting the rock
and letting the sunshine in. Although autism researchers and experts know
what Freeman is telling parents here, most have been reluctant to share it
with those outside our inner circle. For example, Freeman cautions that
“there are some very intelligent, talented researchers who produced biased
researchwhichtheyoftenhavepublishedinpeer-reviewedjournals”(p.384).
Her discussion of the world of academic publishing is revealing on multiple
levels. Consider these topical headings: “Advancement Trumps Quality
Concerns,”“Peer Review–NecessaryButNotSufcient,”and“Uncover
theFundingSourcefortheStudy.”
A mini course in experimental design is included that discusses the advantages
and disadvantages of between- and within-subject designs, factorial designs,
and single-subject case designs. Freeman’s discussion of how studies become
biased and how to avoid it is excellent, as is her treatment of the different
types of bias. Being a social scientist, Freeman knows her way around the
waterfront when she illustrates how researchers mistakenly ruin their own
well-designed autism treatment studies. She concludes the book with red
agsforquackery.
This book is a must read for any parent who has a child with autism, because
within its pages lies the unvarnished truth regarding what works and doesn’t
work and how to make the distinction. If you work with parents, encourage
them to buy a copy. If you work at a school or agency, make sure this book
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
xviii
is in the library. If you teach behavior analysis, use the book to expose
your students to an author whose writing is elegant, straightforward, and
brutally honest.
For a true understanding of the source of the passion that drove Freeman
to write this book, read Science for Sale in theAutism Wars (2003)
that describes a landmark legal battle between families with children
with autism and government and academic mercenaries. Although I
would never wish for anyone to go through what Sabrina Freeman has
experiencedinherlengthyghttohavesciencebeappliedtoherdaughter,
she took her disappointment and rage and turned them into two very
thought-provoking books for which parents with children with autism
and those of us who treat them should be very grateful.
Dr. Richard Foxx, Ph.D. BCBA-D
Professor of Psychology
Adjunct Professor of Pediatrics
Penn State University
References
Foxx, R.M. (2008). Applied behavior analysis (ABA) treatment of autism: The
state of the art. Child and Adolescent Psychiatric Clinics of North America, 17, 821-
834.
Freeman, S.K. (2003). Science for sale in the autism wars. Lynden, WA: SKF
Books.
Freeman, S.K. (2007). The complete guide to autism treatments. A parent’s hand-
book: Make sure your child gets what works. Lynden, WA: SKF Books.
Freeman, S.K., & Dake, L. (1997). Teach me language. Langley, BC: SKF Books.
Jacobson, J., Foxx, R.M., & Mulick, J. (Eds.). (2005). Controversial therapies for
developmental disabilities: Fads, fashion and science in professional practice. Lon-
don: Routledge.
Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellec-
tual functioning in young autistic children. Journal of Consulting and Clinical Psy-
chology, 55, 2-9.
Introduction
xix
The Complete Guide to Autism Treatments was inspired by parents of
childrenafictedwith autism. Ihavespokento thousands ofparents
about various treatments and answered the same questions over and
over again. Many times I gave tutorials to individual parents. I realized
that parents need a clear way to understand how science works so they
can make appropriate treatment decisions for their children.
In addition, professionals and paraprofessionals need to have a better
understanding of the scientic method so they do not inadvertently
recommend a treatment with no science behind it to the parents of the
children they work with. It is crucial that professionals remember that they
hold considerable status and legitimacy in the eyes of parents, and with that
legitimacy comes responsibility — a responsibility to not inadvertently
send parents down the road of quackeryinautismtreatments.
Currently,manyparentsnditdifculttoevaluateautism treatments for
their child. They are forced to rely upon experts who may or may not know
enough about the science to provide accurate information. Therefore,
in a sense, parents need to become experts themselves. Fortunately, the
scienticmethodis not difcult tounderstand.It simply needs tobe
laid out in a form that is understandable. All parents, professionals and
paraprofessionals alike need to know how to make informed choices
about which therapies to use to treat the child’s autism. After reading this
book, my sincere hope is that everyone will be able to evaluate the next,
new purported treatment or cure that comes along. It is very important
Introduction
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
xx
tobeabletoasktherightquestionsandtondtheawsinthescience
behind the purported treatment, or to nd the evidence that, in fact,
the treatment is effective. At a minimum, understanding the scientic
method will protect thousands of children from quackeryand,hopefully,
provideparentsandprofessionalswiththetoolstondtreatments that
are effective for autism.
I must apologize in advance to many deceased philosophers of science
insofar as I am going to make short shrift of most of their concepts;
however, parents of children with autism and the professionals they rely
upon only need to know enough about scientictheoriesandtheoretically
motivated researchtoprotecttheirchildrenfromquackeryandthevendors
of“snakeoil”treatmentsforautism.Parentsofchildrenwithautism
are better off when they understand statistics and how they are used to
reportstudyndings.Onlythenwillconsumersbeabletoevaluateclaims
about autism treatmentsthataresupportedthroughtheuse(ormisuse)
of statistics. In short, this book is designed to give those who care about
the futures of children with autism the information they need to make
suretheirchild“GetsWhatWorks!”
Thebookisorganizedintotwosections.InSectionOne,wescrutinizethe
range of treatment options offered to parents of children with autism and
use the tools of the scienticmethodtoevaluateeachtreatment to help
create informed consumers of autism treatment services. Section Two is
designed to provide a background in science for parents or professionals
who are newcomers to the scienticmethod.Thissectionisamust-read
for consumers who plan to independently scrutinize the next autism
treatment introduced into the marketplace. For those who may not have
a background in science,IsuggestthatSectionTwobereadrst as a
primer, prior to reading about specic autism treatments. Otherwise,
therstsectionisbestreadbytopic,asareference,orsequentiallyasa
comprehensive guide to autism treatments.
Section One: What Works and What Doesn’t?
1
Section One
What Works and
What Doesn’t?
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
2
Section One: What Works and What Doesn’t?
3
This section groups similar autism treatment approaches together. Although
the typology may not be perfect because some treatments do not easily lend
themselvestoaspecicorientation, this categorization is probably the easiest
way for readers to wade into the deep, murky world of available autism treatments
(Iusetheword“treatment”verylooselyforsomeofthesemethods).
When reading a section on a particular method, I have introduced the method
with no editorializing. In other words, I present the treatment method in the
clearest way available based upon what the treatment professional has said about
his or her method. No matter how wild or wacky an idea may sound, we must
look at the data rather than rely on our intuition to determine if the treatment
method is absurd or sensible.
After introducing the method, I then look at the evidence that supports the
claims made by those who teach or practice the method. In this subsection, I
highlight concerns about the studies and then give readers a chance to evaluate
mycomments.Finally,Iprovidea“BottomLine”regarding each treatment.
Scienceisdenedbydebate;therefore,Iwelcomereaderstodisagree with me
regarding my evaluationsbasedonthescienticevidence. The goal of this book
is to have consumers critically evaluate autism treatments so they are 100 percent
informed about a treatment before they attempt it on a vulnerable child.
Cost of Autism treatment
BecauseIamalsoaparent(andanethicalhumanbeing),Irefusetoevaluatea
treatment based on economics. There is a very serious political debate raging
among policy makers about the number of resources children with autism should
receive relative to other children with special needs. Aside from the draconian
and heartless nature of these debates, the arguments are also awed because
this group of children needs to be treated and educated rather than warehoused.
Unfortunately, highly bureaucratized systems concerned with short-term
budgeting(civilservantsforgettingtheirprimaryfunction),regularlyattemptto
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
4
provide children with treatments that are economical rather than effective, as
a means to ration resources.
In addition, there is a trend to ration treatment based upon an autistic child’s
functioning level. It is particularly disturbing to see a child with severe autism
not given the interventionrequiredduetothedegreeofseverity.Asaresultof
treatment rationing, much litigation takes place revolving around treatment for
children with autism. This book does not enter the turbulent treatment rationing
debate, although it is self-evident that as advocates for their children, parents
needtoghtforthemostappropriatetreatment available, regardless of cost to
the health care or educational systems.
Half-baked Research
Oneofthe primary shortcomingsofmostresearchintheautismeldisthat
researchers tend to apply their ndingsprematurelyonchildren.Itseemsas
though an autism treatment researcher or practitioner need only develop an
interesting idea and desperate parents are happy to volunteer their children to
receive the treatment. Unfortunately, much of this research is still very much in
the experimentalstage(andlacksevidence that it is effective).Well-meaning
parents and professionals who are uninformed how research must proceed
to determine a treatment’s effectiveness often recommend this experimental
treatment to parents of autistic children. This observation is particularly true
in the area of biomedical therapies for autism.
In this section, I have included every treatment offered to parents, irrespective
of whether it has been discredited, is still in the experimentalstage(half-baked),
or whether it is considered best practice. After evaluating the data, it is up to
consumers — the parents — to decide whether or not to experiment with their
child. However, it is very important to note that some of the unsubstantiated
treatments may actually be harmful for the child. Some caution is advisable.
AswillbecomeevidentthroughoutSectionOne,Istronglyrecommendagainst
pursuing these potentially harmful treatments.
Section One: What Works and What Doesn’t?
5
p Home-based Intensive Behavioral Treatment
p School-based Intensive Behavioral Treatment
p Offshoots of Intensive Behavioral Therapies
Behavioral Therapies Section 1.1
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
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Section One: What Works and What Doesn’t?
7
Behavioral Therapies
What is Behaviorism as it Applies to Autism?
In the world of autism therapies, there is a considerable amount of research
conducted on various types of behaviorism. Behavioral methods or schools
of thought may be different in terms of their goalsfor the child(e.g., which
behaviors they would like to increase or decrease or which skills they would
likethechildtoacquire).However,keepinmindthattheactualmethod they
are relying upon has the same origin. It all ows from the work of B.F. Skinner,
the grandfather of behaviorism.
Behavioral intervention for individuals with autism involves behavior
modicationbased onB.F. Skinner’s principles of operant conditioning, used
to decrease undesirable behaviors and to teach and encourage new and desirable
behaviors. Behavioral practitioners and theorists analyze human functioning
based only on those behaviors that are overt and observable, as opposed to making
inferences about internal mental states.1 Behavioral theory proposes that the
use of reinforcement and punishment techniquestoeliminatenon-functionalor
destructive behavior,whilebuildingupthefrequencyandvarietyofalternative
behaviors, will provide a basis for aiding development.
What is Applied Behavior Analysis?
When it comes to autism,overthelastforty-veyearsbehaviorists have taken
lessons from research done on animals, and have signicantlymodied those
techniquesforusewithmanypeople,includingthosewithautism. The techniques
thatthiseldhasestablished are not simply to teach people with a wide variety of
problemshowto“behave;”rather,throughbehavioral techniquesthatoriginate
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
8
intheeldofApplied BehaviorAnalysis(ABA),treatmentprofessionalsare
able to change self-destructive or maladaptive behaviorssothatpersonsaficted
with autism can attain a large repertoire of important life skills, including
communication, academic, social, self-help, and foundation skills which promote
independence.
TheeldofApplied Behavior Analysis is very broad: the treatment of autism
isonlyasmallbutgrowingpartofthiseld.The certifying body, the Behavior
AnalystCerticationBoarddenesABAasfollows:“Applied behavior analysis
is a well-developed discipline among the helping professions, with a mature
bodyofscienticknowledge,established standards for evidence-based practice,
distinct methods of service, recognized experience and educationalrequirements
forpractice,andidentiedsourcesofrequisiteeducationinuniversities.”2 In
terms of autism, governmentagenciesoccasionallyattempttodenetheeld
of ABAas ayoung, emergent eld thathas insufcientdata on efcacy* or,
conversely, that there is not enough data on the application of ABA principles
for children with autism six years of age and older. This is categorically untrue,
as is evident by hundreds of studies conducted from 1980 to the present done in
thiseld,mostofwhichwereconductedwithadults,notchildren.3
Itis importantto understandthat notall those certied inApplied Behavior
Analysis necessarily have the expertise to design and implement an intensive
behavioral treatment program for children with autism. Before parents set up
an intensive behavioral treatment program with a behavior analyst, they need
tomakesurethatthisprofessionalhastherequisiteexperiencewitharangeof
autistic children.
*For more information on the way the governmentshavewarpedanddistortedtheeldofABA
to avoid paying for treatment for children with autism, I encourage you to read, Science for Sale
in the Autism Wars.4
Section One: What Works and What Doesn’t?
9
What is Intensive Behavioral Treatment?
Intensive Behavioral Treatment(IBT)forchildren withautism is centered on
the idea that the use of behavioralprinciplesinahighlyintensivemanner(e.g.,
fortyhoursperweekoftreatment)iseffective in ameliorating the symptoms of
autism. Researchers have found that the global development of children with
autismcanbeinuencedthroughtheuseof1)operantconditioning,2)techniques
researchedandappliedfromtheeldofbehavioranalysis,and3)ndingsfrom
the literature on child development. In other words, since autism is a Pervasive
Developmental Disorder, IBT can be used to intervene positively in the outcome
of autistic disorder by forcing development that is not occurring naturally. It
was hypothesized, and later supported, by research that the child’s delay or
disorder in language, social development, cognition, and overall functioning
can be mitigated or eliminated with early IBT. Although some describe IBT
as devoid of developmentalinuencesfromthetheories of child development,
this is, in fact, not the case.
Is the IBT Program Home-based or Center-based?
According to practitioners of IBT, when done competently, treatment should
take place during every waking hour of the child’s life in order to maximize the
child’s developmental window. Whether a child participates in a home-based
behavioral treatment program or a center-based treatment program is generally
a decision made by the child’s parents. There are differences in philosophy
regarding these two options when it comes to integration versus segregation.
The data generated by home-based programs is more plentiful and generally
stronger than that of center-based programs. This may have less to do with
comparative effectiveness of the two program approaches,butratherreects the
prolicnatureofthoseresearchers who conduct studies on home-based treatment
programs. In the next few pages, I will introduce the traditional home-based and
school-based intensive behavioral treatment programs, and then discuss autism
treatment offshootsfromthebehaviorismeld.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
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Section One: What Works and What Doesn’t?
11
Behavioral Therapies: Home-based Intensive
Behavioral Treatment
What is Home-based Intensive Behavioral Treatment?
The pioneer in treating children with autism in a home-basedmilieuisDr.O.
Ivar LovaasoftheUniversityofCaliforniaatLosAngeles(UCLA),withthe
work he initiated in the 1960s and 70s at the Young Autism Project. Many
worldwide sites were originally established to replicate the ground-breaking
autism treatment work of Lovaas rst published in 1987. Today, intensive
home-based treatment programs for children with autismarenowquitepopular.
Although there are many reputable practitioners who never trained at either the
Young Autism Project or associated replication sites, as a result of the treatment
protocol developed and tested by Lovaas and colleagues, home-based IBT
programs have come to be referred to by parents as “The Lovaas Method”of
AppliedBehaviorAnalysis,or“Lovaas-typeABA.”* Unfortunately, there is at
this time no systematic way to differentiate those practitioners who are doing a
competent job of programming for an Intensive Behavioral Treatment program
fromthosewhoare unqualied, muchto thefrustrationofbothparents and
*This branding is disturbing to many reputable academics1 because they are concerned about a focus or
overrelianceonspecictechniquesratherthantheuseofdata-driven changes based on the principles of
ABA. They are also concerned that branding precludes new science-based advances. Although these
are legitimate concerns, consumers (the parents making crucial treatment decisions for their children)
ndthatbrandingprovides someprotectionfromeveryTom,DickorHarrywhowants tohang outhis
shingle and claim he knows how to create, maintain, and supervise a science-based behavioral treatment
program.ManycriticsofbrandingclaimthatcerticationinABAshouldbesufcienttoprotectparents
fromincompetentorunqualiedproviders.IdisagreeasthereareBoardCertiedBehavior Analysts who
create programs exclusively relying on certain techniquesthatarewithoutsufcientevidence of efcacy.
It is my view that the ethical guidelinesoftheself-policingboardcertifyingbodyisnotsufcientprotection
for consumers when it comes to efcacy.Hopefully,onedaythere willbea Board CertiedBehavior
Analyst specialization in autism and branding will fall out of favor. However, until that time, I predict
that parents will continue to brand and use this shortcut to refer to the home-based Intensive Behavioral
Treatment program that originally created the results from the landmark 1987 Lovaas study, even though
many of the techniqueshavebeenrenedandimprovedsincethe1970sand80s.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
12
ethical academicsinthiseld.Intheeldofintensive behavioral treatment in
general, but home-based treatment in particular, it is still very much a case of
caveat emptor.
Early behavioral treatment for children with autism applies behavior modication
principles to teach children with autism in their homes and communities under
the watchful eye of their parent or caregiver. This interventionidentiesskill
decits(areasofweakness)whichhaveresultedinthechild’slackofsuccess
in typical learning situations, and targets them for “manual” acquisition of
thenecessaryskills.Thedifcultythatchildrenwithautism typically have in
learning naturally from the environment is targeted by breaking down skills and
instructions into their smallest components.Thechildrstacquireseachstep
separately, then chains them together and eventually masters the entire skill. To
maketheskillacquisitionprocesseasier,severalmethods are used. Currently,
the common structures in competent IBT programs include: direct instruction
(thechildbeingdirectly taught the part of the skill by a therapist);1:1therapist
to student ratio(oneadulttoonechild);discretetrialtraining(atherapist-led,
highly structured teaching technique);discriminationtraining(anotherhighly
structured techniquethatteachesthroughdirectcomparison);prompting and
fading strategies(atechniquethathelpsthechildlearnbyprompting or giving
hints for the correct answer and then fading the prompts or hints once the learning
hastakenplace);shaping(atechniquewhichtakestheskilllevelofthechild
and, through well-planned reinforcement, teaches the child to improve his or
herskilllevel);andchaining(atechniquebywhichacomplexskillistaughtby
teaching a number of simple skills and connecting these simple skills to master
thecomplexskill);andusingavarietyofreinforcement strategies(atechnique
to reward the child for the correct response). Thebasiccurriculum includes
imitation skills, receptive language skills, toy play, and self-help skills.Once
these components have been mastered, the more advanced curriculum includes
Section One: What Works and What Doesn’t?
13
expressive language skills, abstract language and interactive play (withother
children). Further advancement has the child overcome decits in both the
home and school environments where the curriculum includes pre-academic
and academic abilities (such as w eather and calendar skills), socialization
skills, cause-effect learning and observational learning. The goal of this stage
istopreparethesechildrentolearn“naturally”fromtheschoolenvironment.
Intensive Behavioral Treatment programs follow a basic hierarchy of skills;
however,theyarehighlyindividualizedandexiblebasedontheskilllevelof
each child.
Importantly, in Intensive Behavioral Treatment programs, non-learning behaviors
(e.g.,self-destructiveormaladaptive)aretargetedforeliminationusingavariety
of behavioral techniques.Originally,thetreatment protocol employed extinction
(ignoringthebehavior),time-out(removingthechildfromthesituationfora
shortperiodoftime),physicalrestraint(holdingthechild’shandsifheorshe
werehurtinghimorherself),verbal reprimands(tellingthechild“no”or“stop”),
types of differential reinforcement(e.g.,rewarding the child for not engaging in
a particular behavior),andredirection(involvingthechildinanotheractivityto
interrupt a nonfunctional behavior).Manyofthesetechniquesareusedtoday;
however, time-outs and physical restraint have fallen out of favor with many
practitioners.
What evidence do practitioners have that this
really works?
Our wide literature search netted over 100 articles on comprehensive IBT
programs. Most of the publications were commentaries about the original
studies and the replications of Lovaas’ work. In terms of peer-reviewed articles
presenting data on IBT,therewerefourteen(14)articles. In each and every study
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
14
where the treatment delity was high,2,3,4,5,6,7,8,9,10 children in the experimental
groupsignicantlyimprovedoverchildreninthecontrol group. Even in some
of the parent-directed groups,9,11 the children in the experimental group fared
much better than the control group that did not receive the intensive treatment.
There are a few studies in which the parent-directed therapywasnotsufciently
rigorous, and therefore, the children did not make substantial gains.13,15,16 The
above articles will be now presented and discussed.
The original Lovaas study (1987), showed extremely promising results for
treatment efcacy.Theoutcomes indicated that 47% of the experimental group
(n=19) achieved normal functioning, 40% were assigned to classes for the
language delayed and 10% were assigned to classes for the autistic/retarded.
In contrast, only 2% of the controlgroup(n=40)achievednormalfunctioning.
Forty-vepercentwereplacedinclassesforthelanguage-delayed with the other
53% placed in classes for the autistic and mentally retarded.15 The experimental
group made average IQ gains of over 30 points. These treatment gains were
assessedveyearslaterandfoundtobemaintained,withtheexceptionoftwo
children.5One of thesechildrenmovedback into alanguage delayed class;
however, another child joined a mainstream class and, therefore, outcome
percentages remained stable.
Smithandcolleagues(1997),undertookareplication of these results through
archival data; however, they used participants who were in the lowest functioning
range. Their resultsconrmedthattreatment gains were achieved, even with the
most challenging population of autistic children. Average IQ gains made were
tenpointsonaverage(+/-2)fortheexperimental group, versus an average three
point decrease in the control group. At intake, no child in either the experimental
or the control group had any speech; however, at follow-up, ninety-one percent
(10/11)oftheexperimental group used spoken words functionally, versus twenty
Section One: What Works and What Doesn’t?
15
percent(2/10)inthecontrol group. It is important to note that the Smith et
al.(1997)study selected children with diagnoses of autism and severe mental
retardation, making these results that much more impressive. As mentioned
earlier, there are several other designs replicating the results of Intensive
Behavioral Treatment.3,4,7,8,9,10.11,12,13,14 Although most of the above studies were
home-based, even those studies where the children were in a pre-school,7,8 showed
asignicantcomponent of home-based treatment.
The majority of studies that attempt to replicate Lovaas’ original work generally
use control groups, creating a between-subjects design. Anderson(1987)isan
exception: they used a within-subjects design with fourteen children receiving
treatment. Between-subjectsdesigns(usingacontrolgroup)areoftenusedto
control for confounding variableswhichcouldinuencetheoutcome or results
of the studies(seethenextsectionofthebookforadiscussionontheroleofa
controlgroup). Theonemethodological problem which exists in the studies
was the absence of random assignment to the experimental and control groups.
Due to parental protest at the time Lovaas conducted his original study, he was
unable to use randomization to assign children to groups. The National Institutes
ofHealth(thefundingsource of the study),gavetheirblessingtoLovaas to use
a different techniquetoassignchildrentogroups.Todiffuseparentalconcerns,
Lovaas assigned children to experimental condition based on funding and distance
from the UCLA clinic. In addition, he matched children in the control and
experimental groups to guarantee that the two groups were similar at intake.*
*Baer(1993)referredtothistechniqueasfunctionallyrandomassignmentandarguedthatitcouldbeequally
as convincing as random assignment providing the researchers did not control the way the children were
assigned. Baer explains that because assignment to control or experimental group was based on resources,
a variable out of the experimenter’s control, there is no reason why this procedure could not have created
true randomization. He states: “the child’s status as a best-potential case or a worst-potential case, even if
perceptible to the clinician, could not have affected the availability of those resources at the moment that the
childwasavailableforassignment,andso,inmyjudgment,theassignmentwasfunctionallyrandom.”17
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
16
In addition to matching, Lovaas(1987)variedtreatment intensity between the
control and experimentalgroupstodeterminewhetherhigh-quality,lowintensity
treatment would have positive effects. It did not.
None of the replications of the original study randomly assign children to groups
because it is ethically impossible to do so due to the original data which shows
the effectiveness of the treatment. In order to overcome this problem, Sheinkopf
and Siegel(1998)usedmatched pairs assignment. The Smithetal.(1997)article
examined archival records and attempted to match the groups based on age, IQ,
diagnosis, language and behavior. Each study used a variety of widely-accepted
measures of the dependent variable, autism.
Results indicate signicant improvement for the experimental group in all
home-based behavioral intervention studies. As mentioned above, the most
dramatic results came from the study by Lovaas (1987), which reported an
average of thirty point IQ gains in the experimental group. This program also
had the highest intensity of treatment at forty hours per week for two or more
years. The McEachin(1993) study is a follow-up on the children from the
Lovaas(1987)study, which shows that these children maintained their gains
andsubsequentschoolplacements.Inaddition,theSallowsetal.(2005)study
not only replicated the original Lovaas (1987) study demonstrating that the
experimentalgroupsignicantlyimprovedoverthecontrol group, but showed
the level of improvement of the children in the experimental group rivals that of
the Lovaas best outcomechildren.Anadditionalstudy,Cohenetal.(2006)used
aquasi-experimental design with twenty-one-age and IQ-matched children in a
community-based setting over a three-year period. They found that the children
whoreceivedIBTbasedontheUCLAprotocolfaredsignicantlybetterthanthe
matched children attending special education classes.10Onestudythatrequires
particular mention is the Howardetal.(2004)study in which IBT was contrasted
Section One: What Works and What Doesn’t?
17
withhighquality,intensiveeclecticprogramming. The Howard et al. study
clearly demonstrates that eclectic treatments for autism are not as effective as
IBT based on the principles of Applied Behavior Analysis.
What does the therapy actually look like?
Since the data demonstrate2 that an average of thirty to forty hours per week of
intensive intervention is crucial for best outcome to be achieved, the ideal therapy
program will have the child engage in therapy forty hours per week. The rationale
for this level of intensity comes from typically developing children. Children
without autism engage in at least forty hours per week of active learning;
however, for them it is a naturalistic, incidental type of learning. Since autistic
children do not generally learn useful skills or information naturally from their
environment during their free time, this learning needs to be facilitated, and
is best done through structured learning for approximately the same amount
of time as that which occurs for their typically developing peers. The UCLA
protocol starts therapy in an intensive one to one intervention in which skill
acquisition occurs using highly structured forms of learning. The therapy
rsttakesplaceinthehome,typicallywithyoungcollegestudentstrainedas
therapists, and eventually progresses into the preschool setting. As the child’s
abilities increase, the structure of the teaching decreases and learning begins
to happen more naturalistically. The eventual goal for children who have gone
through the program is to achieve independent learning, from their environment,
in the same manner as occurs with typically developing children. In good IBT
programs, naturalistic learning is programmed for children only once they are
ready, and not before. The ideal scenario occurs when the autistic child is able
to enter kindergarten independently and learn naturalistically in the same manner
as that child’s peers.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
18
Would I try it on my child?
Yes, I would and I did. My child began an intensive, home-based behavioral
treatment program based on the work of Dr. Lovaas when she was four years
old. I chose this methodbeforeitbecamepopular(approximately1992)because
it was the only treatmentthathadanyhighqualitybetween subject-designed
studies to evidence the effectiveness of the treatment. My decision was based
on science, which indeed bore fruit as my daughter did make incredible gains.
It is important to remember, though, that my anecdotal reporting regarding my
child’s gains should not sway you to use this method. Anecdotal reports are
unreliable to use when making the important decision about treatment methods
to use with your child, even if the anecdote comes from someone who respects
science. What should convince you, when choosing one method over another,
is the abundance of scientic evidence behind the method.Itwasscientic
evidence that led me to choose IBT for my child.
What else do I think?
Although it is very frustrating to parents, the lack of any known cause of autism
makes the behavioral treatment approach ideal because its effectiveness does not
depend on an underlying theory of cause. Based on the evidence provided by this
group of studies, it can be concluded that home-based behavioral intervention,
using the best practices models that can be found in the UCLA protocol and its
close approximations, is an effective method for the treatment for autism. As
is illustrated by the Smith(1997)study, this intervention is effective, even for
the autistic and severely mentally retarded population which, in my opinion,
presents the greatest challenge before us as parents and professionals.
Section One: What Works and What Doesn’t?
19
WhatIndparticularlyappealingabouthome-based IBT is that the parent is the
case manager. In other words, the child is under the watchful eye of those who
love him or her. In addition, the concept that my toddler or pre-schooler is able
to enjoy all the experiences of typically developing children, with a therapist
helping to facilitate this interaction, rather than the child being segregated from
the earliestage(toaccessmoreexpertise),isveryappealing.Afterspeakingto
thousands of parents, I found that the philosophy of integration and normalization
is a philosophy that is more comfortable for a parent of a newly-diagnosed child
to accept. Although this philosophy may or may not be a contributing factor
for the effectiveness of a behavioral treatment protocol, it is fortunate when
the treatment protocol naturally accommodates inclusion and integration, and
avoids stigmatization.
Oneissuethatparentsshouldbeawareofinrunninghome-based IBT programs
isthatifthedelityofthetreatmentisnotsufcientlyhigh(i.e.theprogram
is not “tight” or implemented correctly), some of the data indicate that the
child’s gains will suffer. That said, the parent-directed group which received
three hours of supervision every other week in the Sallows and Graupner
(2005)studywasofsuchhighqualitythattheirchildrenfaredaswellasthe
clinic-directed children.18 This ndingwasunexpectedandimportant,though,
because it demonstrated that parent-directed treatment programs with minimal
supervision(sixhoursamonth)canproduceexcellentoutcomes.
Critics of IBT(andtherearemany),claimthatthistreatmentisamechanistic
program which essentially turns children into robots. These programs are also
criticized because some claim that the children do not generalize their skills from
the therapy sessions into the natural environment. As I previously mentioned,
a good behavioral intervention program must be individually designed and
customized for each child. The program grows and is modied with the
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
20
child’s developing skills and, as a result, the program becomes increasingly less
structured as the child becomes better able to learn in that format. Generalization
of skills is programmedintoanyqualitybehavioral intervention program to ensure
that skillstaught“atthetable”willalsobetaughttobeusefulforthechildin
theireverydayliving.ThisiswidelyrecognizedintheeldofIBTasakeygoal
for programmers. In short, good IBT programs do incorporate generalization
anddo notcreate“robots.”Critics alsochargebehavioral therapists as being
abusive to children through the use of verbal and physical aversives. Fortunately,
the use of physical aversives* and other techniques,suchasphysical restraints,
are not part of the home-based treatment protocol(andhavenotbeenforover
twentyyears).
In the original Lovaas study(whichbeganintheearly1970s),amild physical
aversive (a slap on the thigh) was used with a small subset of the children.
This physical aversive was dropped from the protocol approximately twenty-
veyearsago.Currently,theLovaas Institute For Early Intervention(LIFE)
uses the techniques of extinction, redirection, differential reinforcement and
teaching alternate forms of behavior. The use of physical aversives no longer
occurs through practitioners from the institute or at any of the treatment sites
afliatedwiththeUCLAYoungAutism Clinic, or by any reputable independent
practitioners using the UCLA protocol.
What additional studies would I like to see the
researchers do in this field?
At this point, there are a large number of IBT research replication sites, both in
theUnitedStatesandthroughouttheworld(www.Lovaas.com lists the worldwide
*Today, if physical restraintsaretobeused(whichmaybenecessaryifthechildisseverelyself-injurious),
they are generally used only as needed, in highly controlled institutional settings such as hospitals, where
there is video monitoring, precise data collection and, depending upon jurisdiction, judicial surveillance.
Section One: What Works and What Doesn’t?
21
replicationsites).Thereplication sites are designed to do exactly what their name
implies: replicate the original study published by Lovaas and associates in 1987.
These replication sites use the original protocol from the Lovaas(1987)study with
a few exceptions. Replicating the treatment protocol utilizing rigorous scientic
method is crucially important for our children. Unfortunately, the randomization
to either a control or experimental condition increasingly becomes problematic
because the more evidence that is gained regarding the effectiveness of this
method, the more unethical it becomes to have a control group of children who
do not receive an intensive amount of this type of treatment. Due to the relentless
rationing of health care* and education for children with autism, continued
replication of the Lovaas’ initial landmark study(Lovaas,1987)byindependent
investigators is particularly important concerning the politics of autism policies
rather than the science of autism treatment.
Who else recommends for or against home-based
behavioral treatment as a method for the treatment
of autism?
There is a large number of reputable organizations that have conducted
independent reviews endorsing IBT as best practices. The New York State
Department of Health’s clinical practiceguidelines(1999)regarding the use of
IBT as a treatment for autism,wasbasedlargelyonvestudies, all conducted
by Lovaas and colleagues, or from partial replications of the protocol developed
by Lovaasandcolleagues.Largelybasedonthesevestudies, the New York
Report concludes: “It is recommended that principles of applied behavior analysis
*The incorporation of Intensive Behavioral Treatment will be fought by those in the autism industry
offering competing treatments and by governments and their policy analysts who do not want to pay for
this treatment. They are attacking the science behind IBT purely because they are self interested. The more
evidence that is published about the efcacyofIBT, the less likely it is that they will be able to continue
to deny children with autism best practices treatment.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
22
(ABA)andbehavior intervention strategies be included as an important element
of any intervention program for young children with autism.”19 In addition, a
U.S. Surgeon General, Dr. David Satcher, had the following to say about Lovaas’
work: “Thirty years of research demonstrated the efcacyofappliedbehavioral
methods in reducing inappropriate behavior and in increasing communication,
learning, and appropriate social behavior. A well-designed study of a psychosocial
intervention was carried out by Lovaasandcolleagues(Lovaas, 1987; McEachin
etal.,1993).Uptothispoint,anumberofotherresearch groups have provided
at least a partial replication of the Lovaas model.”20 It is important to remember
that this report was published in 1999 prior to the publication of additional
studies replicating these results. Additional organizations endorsing IBT include
the AmericanAcademy of Pediatrics (2001),21 the National Research Council
(2001),22 and the American Academy of Child and Adolescent Psychiatry.23
So you’re still on the horns of a dilemma?
If you are still thinking about whether or not to set up a home-based behavioral
treatment program for your child, you might want to read Lovaas (2003),24
Mauriceetal.(1996),25 and Leafetal.(1999)26 to gain an in-depth understanding
of how home-based treatment programs are administered. In addition, I encourage
you to view the videotape, “Behavioral Treatment for Children with Autism”
available in most university libraries or to be purchased on-line at the Cambridge
Center for Behavioral Studies.27 This videotape chronicles Lovaas’ research
from the late 1960s to the late 1980s and provides an overview of the original
treatment protocol.
Section One: What Works and What Doesn’t?
23
What’s the bottom line?
Based on the scienticresearch to date, there is substantial evidence that home-
based Intensive Behavioral Treatment is effective for children with autism.
In addition, treatment gains appear to be long-term and for a broad range of
functioning levels.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
24
Section One: What Works and What Doesn’t?
25
Behavioral Therapies: School-based Intensive
Behavioral Treatment
School-based Intensive Behavioral Treatment shares many of the components of
home-based Intensive Behavioral Treatment programs except that these programs
are based in preschool settings, which are often segregated or integrated with a
high ratio of autistic children to typically developing children. The main issue
with school-based IBT programs is treatmentdelity.Inotherwords,howmuch
ofthedayisthechildactuallyreceivingqualityautismtreatment, and how much
of the day is the child only receiving care-giving. Although this characterization
may appear somewhat blunt, this is indeed a concern with many school-based
programs. Below we will highlight three programs that produced data and discuss
each program separately.
What does school-based IBT look like?
Princeton Child Development Institute
The Princeton Child DevelopmentInstitute(PCDI)is a nonprot society that
runs a preschool, a school and two teaching homes. In addition, they offer
supported employment and career development for adults.1 The PCDI is not
afliatedwith a university;however,research is conducted with some of the
children enrolled in the PCDI and ndings are published in peer-reviewed
journals. Programs are individualized for each child based on that child’s skills
and decits. Each child’scurriculum is implemented using the principles of
applied behavior analysis. A curriculum for a student at the PCDI would typically
include nonverbal and verbal imitation, receptive instructions, toy play, receptive
and expressive language skills, reading and academic programs and social
initiations. These programs are delivered using a variety of techniques,which
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
26
include discrete trial training, incidental teaching, use of time delay, visual
schedules and video modeling, as appropriate. Direct instruction is used at the
PCDI, using a teacher-to-student ratio that ranges from one-to-two to one-to-
ve.Problematic(i.e.maladaptive)behaviors are targeted for elimination using
a variety of well-established behavioral strategies that originate from the rich
eldofapplied behavior analysis.
Douglass Developmental Disabilities Center
The Douglass Developmental Disabilities Center (DDDC) is a therapeutic,
experimental preschoolwhichisafliatedwiththeDepartmentofPsychology
at Rutgers University and is located on the university campus. The DDDC
is designed to research the treatment and education of children with autism;
accordingly, staff and doctoral students in psychology administer the center.
The DDDC has organized the preschool into three classrooms, each grouping
children based on ability.Oneofthegoals is to move the children from a small
group into a larger group setting once the child can function in that setting. A
typical curriculum at the DDDC includes the following: expressive and receptive
language skills(teachingthechildtocommunicateaswellasunderstandwhatis
beingsaidtohim);grossandnemotorskills(workingonthechild’scoordination
withhisentirebodyas well as using his ngers andhandsonsmallertasks);
affect(understandingandexpressingemotion);self-help(daily living skills to
promote independence); cognition (teaching concepts that are pre-academic
oracademicin nature); socialization(whichincludesinteracting with others,
promoting a concept of self, and controlling and promoting various behaviors).
In this broad curriculum, the various teaching programs or units are taught using
direct instruction with one teacher to one child, or in a group setting. Each child
receivesbetweenthirty-veandforty-vehoursofinstructionperweek,twelve
months per year.2
Section One: What Works and What Doesn’t?
27
LEAP Program for Preschoolers
The LEAP program(LearningExperienceAlternativeProgram for Preschoolers
andParents)forpreschoolers with autism promotes an integrated early childhood
education occurring across home, school and community settings. LEAP uses
behavioral practices and developmentally appropriate strategies to implement
the curriculum. A component of the LEAP philosophy is to teach a child with
autism to learn from his peers.3 Within the curriculum, children are taught to
transition from one activity to another, select play, and follow routines and
group activities. Independent playistaughtthrough:1)havingthechildmodel
peers;2)breakingthetaskdownintosmallermoremanageableparts;3)direct
teaching(instruction);4)cuingthechildtothecorrectanswer(prompting),and
5)rewards or reinforcements. Social interaction is taught by creating a structured
environment, using peers, teacher involvement, rewards and role-playing
scripts. Languageistaughtusing“milieuteaching”(whichincludesincidental
teaching)anddirect instruction at the beginning. Teaching style is both child
and teacher directed.Theclassroomhasthreeteacherstosixteenchildren,(ten
typical children and six children with autism).Problematic behaviors are dealt
with by using preventative and positive strategies. To prevent poor behaviors,
LEAP employs class rules, daily schedules, activities, instructional materials,
staff assignments and choice-making. They also use something they term
“Individualized Preventative Strategies,”suchasopportunitiesforadultorpeer
attention, waiting activities, choices and decreasing task demands.
What evidence do the practitioners have that school-
based IBT really works?
The literature on school-based autism programs is replete with descriptions of
programs that have very little data supporting them. The exception to this is
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
28
representedbyvearticlesthatreportsignicantgains with children who have
attended school-based IBT programs.4,5,6,7,8 Fenskeetal,(1985)publishedan
outcome study for eighteen subjects,nineunderageve,nineoverageveat
the PCDI.Oftheninestudentsunderageve,sixofthemindicatedapositive
outcome as a result of the intervention.Oftheninestudentsoverageve,only
one indicated a positive outcome. Positive outcome for this study was measured
by whether the child could live at home and attend a public school or whether
thechildcontinuedtorequiretreatment services.*Positiveoutcomeisdened
very strictly and does not include the gains of those who required ongoing
treatment(and,therefore,remainedintreatmentattheinstitute).Thisgroup’s
gains were not reported as they were in the negative outcome group based on
livingarrangements(whichisanindirect way to measure progress).Inaddition,
the study compared older children with younger children: there was no control
group for comparing results of no treatment or a different treatment, to the one
being offered to both groups of children in this study. Fortunately, these results
are similar to those of many of the home-based behavioral treatment studies
(which use very similar techniques). Therefore, we have some condence
that the outcome of the children from the study conducted at the PCDI was a
result of the curriculum and not a result of the children simply getting older
and maturing.
Three outcome studies published by the DDDC provide data on the individuals
enrolled in their programs.5,6,7 Methodological weaknesses do exist in all three
studies. The Harrisetal.(1990)study compares three groups of children assigned
todifferenttypesofclassrooms(tenchildrenwithautism-vepergroup,and
four typical peers).Classroomassignmentisbasedonseverityofbehavior,
which is problematic because it introduces a relevant variable to autism —
*These ndingsweresignicantatalevelofp<.02;pleaseseeSectionTwoforadiscussiononthemeaning
of signicancelevels.
Section One: What Works and What Doesn’t?
29
behavior. The authors themselves categorize this studyasa“quasi-experimental
design.”9 They found that the children did make gains in language development.
They also found that integration versus segregation didnot inuence rate of
development; however, due to the design awsofthisstudy, the data regarding
integrated versus segregated settings must be viewed as tentative.
Unlike the Harris et al. 1990 study, the other two studies — Handleman et al.
(1991)andHarrisetal.(2000)—donotstatethecriteria by which participants
were assigned to classrooms. Due to this missing information, we do not know
which classroom is responsible for the gains the children made. In other words,
is there an effect created by an integrated or segregated classroom or is this
variable irrelevant? Second, can the improvements seen be attributed to the
original functioning level of the children, or are they due to the techniquesused
in the classrooms themselves? Put another way, if the subjects assigned to the
integrated classroom have more skills that make them capable of learning in a
group setting, how representative are they of the autistic population or how similar
are they to the other group which is comprised of children with less skills? The
ability to learn in a group is an important goal for all autistic children; however,
a large amount of one-on-one teaching or intervention is veryoftenrequired
beforeachildcanactuallylearninagroupsetting.Specically,inorderfora
child with autismtolearnfromagroup,thatchildneedstobeabletorstlearn
through observation and then understand group instruction.
The Harrisetal(1990)study indicates that their subjects, as a group, could be
characterized as “high-functioning.”10 Unfortunately, the lack of representation of
the population of children with autismasawholemakesitdifculttogeneralize
the results, and the fact that the varied groups of children did not have different
forms of treatment(ornotreatment),makesitdifculttojudgewhetherornot
the treatment is responsible for the gains. Fortunately, in the later study the
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
30
researchers did publish the children’s pre-and post IQ scores, which indicate
thatsome ofthe childrendid improve signicantly (using awithin-subjects
designforthestudy).
The Harrisetal.(2000)study follows the original 27 children who spent time at
the DDDC between 1990 and 1992. Therefore, I will focus on this latest study
as it encompasses the long term results of children who purportedly made gains
at the DDDC using widely acceptable IQ measures. These researchers studied
the relationship between the age and IQ of the children when they entered the
DDDC program and their eventual school history. The researchers found that
those children who entered the program prior to their fourth birthday were more
likely to be in regular education than children who entered the program at a
later age. In addition, the intake IQofthesechildreninuencedtheireventual
educational outcomes. Fortunately, the researchers used a few different tests to
measure improvementinthechildren(includingwidelyacceptedIQ measures*),
which provides the reader with a good degree of condence that the gains
observed did, indeed, occur.
There is one study with outcome data from the LEAP preschool model. The data
showed that children made gains in eight out of eight areas measured.8 These
eightareas—nemotormanipulation and writing, language comprehension
and labeling, cognitive counting and matching, and gross motor object and
body movement12 — were measured using only one assessment of the dependent
variable: the LearningAccomplishmentProle(LAP).Unfortunately,theLAP
is not an assessment measure that has been widely proven to be reliable and
valid and is not widely used by psychologists in testing children with autism.
*The Harris et al study(2000)reports IQ testing using the Stanford-Binet test which is widely accepted.
They also use the CARS and the LAP which are less widely accepted measures. In previous studies, how-
ever, children were tested using the Peabody Picture Vocabulary Test-Revised(PPVT-R)6 and the Vineland
Adaptive Behavior Scales: Survey Form.11
Section One: What Works and What Doesn’t?
31
In addition, there was no blind, independent evaluator measuring these eight
dependent variables. The assessments were performed by the teacher, which
introduces rating bias; consequently, it is unwise to trust the results of the
LAP.
Unfortunately, there are several other methodological weaknesses which do
not allow the conclusion that the LEAP model is an effective intervention for
children with autism. The study design lacked a control group. The various
tests were not done independently prior to and after the study, and commonly
accepted psychometric measureswerenotused.Consequently,itisverydifcult
to know whether the gains made were a result of the intervention or simply due
to the child growing older.
Regarding the children in the study, only six children were involved, and
the diagnosis for these children was “autistic-like.” An additional concern
regarding the study was that the diagnosis of the children was not made by an
independent clinician.Thesechildrenwerelabeled“autistic-like”simplybased
on observations along the following criteria: self-stimulation; minimal or no
functional speech; prolonged tantrums; minimal or no positive interaction with
peers; mild to severe range of mental retardation based on McCarthy Scales of
Children’sAbilities(MSCA).13 It is not stated in the article, who it is that made
the observation or administered the MSCA. This lack of rigor in research could
resultinbiasintheclassicationoftheparticipantsasautisticorautistic-like
and could also result in errors in diagnosis, e.g., that these children may have
been PDD or PDD-NOSbutwereerroneouslylabeled“autistic-like.”Therefore,
the participants were not representative of the typical autistic population. The
Diagnostic StatisticalManual(DSM-IIIorIV)wouldhavebeenamorereliable
measure.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
32
What does the therapy actually look like?
IBT is often run in a preschool or school setting; however, the PCDI also runs two
teaching homes. Their preschool and school programsarelimitedtotwenty-ve
students at any given time and services are provided in-home and community
settings as well. Staff are initially trained by the PCDI and regularly evaluated.
The various school and teaching home programs are integrated to foster
consistency and resources are shared between programs. Progress is assessed
in areas of behavior, instructional procedures and family satisfaction.
Staff at the DDDC use a variety of teaching techniquesdependingonthelevelof
the child and the content being taught. They instruct using discrete trial training,
incidental teaching and communication training. Discrete trial training is a very
efcient,systematic, behavioral teaching techniquewhereachildworkswitha
teacher one-on-one, breaking down concepts to make it easier to teach. In contrast,
incidental teaching is a method which attempts to teach a child by focussing upon
the information the child needs to learn when he or she has the opportunity to
learn it naturally. The belief is that the concept will be more meaningful when it
isrelevanttothechild.Thethirdteachingtechnique,communicationtraining,
uses comprehensive speech and language instruction implemented by a teacher,
following the recommendation of the speech therapist.14
Problematic behaviorsaretargetedforeliminationusingthetypical,scientically-
substantiated behavioral techniquescustomizedtothechild.Examplesofthese
methods include a variety of techniquessuchastime-outs, verbally reminding the
child and overcorrection. Every two weeks a speech and language pathologist
assesses the progress of each child. In addition, children’s progress is measured
by using a variety of psychometric tests such as the Stanford-Binet IV, the Battelle
Developmental Inventory and the LearningAccomplishmentProle.
Section One: What Works and What Doesn’t?
33
The LEAP preschool modelisappliedforfteenhoursperweek,twelvemonths
per year. Students with autism are integrated with typical peers in a classroom
setting. In the study by Hoyson, Jamieson and Strain(1984),thereweresixteen
students in the classroom, ten typical students and six students with autism. The
curriculum is individualized for the student, and parents are viewed as partners in
the“educational”process.Theyuseamethod of individualized group instruction
termed TRIIC,theacronymfor“[Tri-I(Innovative,Integrative,Individualized)
Curriculum] for mainstreaming.”15 In this form of instruction, each child is given
individual objectives in three skill areas, and the teacher designs and implements
a group lesson plan that meets the needs of all the children in the group.
Would I send my child to a school-based Intensive
Behavioral Treatment program?
The decision to send one’s toddler off to a treatment facility, even if it is in a
preschool,isadifcultone.Iwouldbeverycarefultoestablish how much of
the day is treatment-based and how much is preschool. If I had lived in New
Jersey when my child was very young, I would have thought very seriously about
sending my child to the PCDI. However, I would have been vigilant to make
sure that the child received treatment every minute of every day. As a parent,
I’ve seen too many preschools that claim they are providing treatment, when
in fact they are providing childcare. This is a serious problem. Government or
universityafliationisnoguaranteethattheautismexpertiseissufcienttorun
a treatment program. Among the worst preschool programs that actually claim
to be ”therapeutic,”aregovernment-funded and staffed programs with a price
tagof$2.5milliondollarstotreattwenty-ve(25)children!
In interviewing the school staff, I would need to know how the school program
and home program are coordinated and monitored. In addition, I would need to
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
34
see evidence that the ratio of one teacher to more than one student is effective.
This is particularly important at the beginning of treatment when most children
with autism do not have the skills to pay attention, understand instructions
orsitatatable. Iwouldalsohavequestions about how the skills learned at
school are going to be generalized across settings(i.e., school tohome)for
children who are not receiving any therapy outside the classroom. If these
questions were answered to my satisfaction, then I might have enrolled my
child. Most importantly, I would need to know when the child is destined to
leave the therapeutic program and is slated to be integrated with his typically
developing peers.
Mychildrequiredone-on-one treatment from the outset, as she did not have
any skills that would have allowed her to learn in a group setting. Therefore,
aslongasshecouldbeplacedinitiallyinthepreparatoryclassroom(withone
teachertoonechild),IwouldhaveconsideredtheDDDC program. I would be
quitenervousaboutmychildmovingtolearninagroup-settingtotheexclusion
of one-on-oneteachingwhichis,inmyview,muchmoreefcientthangroup
teaching. Eventually, we want and need our children to learn in a group setting;
however, it may take the preschool some years to achieve that goal. I would
requireassurancesthatitismydecisionwhensheisreadyforthegroupsetting
and that the decision was only motivated by what is best for my child, rather
than some budgetary constraints requiring more“efciency” and, therefore,
moving her away from a one-on-one treatment setting.
Although the LEAP curriculum sounds like an acceptable curriculum for children
with autism, there is not enough evidence that the children make substantial
gains; therefore, I would not enroll my child in a LEAP program. The integrated
classroom is an interesting idea since it makes sense that a child with autism
should be with typically developing children. However, I would like to see
Section One: What Works and What Doesn’t?
35
a child with autism learn a number of skills prior to integration, in order for
integration to be worthwhile. If my child needed to be mainstreamed, I would
prefer to mainstream the child into a setting that was not therapeutic in nature
but rather was the kind of setting where parents would send their typically
developingchildren.Oncemychildweretaughttolearnthroughmodelling
the behaviors of others, the last thing I would desire is for her to be exposed to
(andpossiblymodel)other autistic children who might engage in repetitive,
self-stimulatory or other maladaptive behavior.
What else do I think?
What is particularly compelling about the PCDI is that although they concentrate
on early intervention, if the child has not graduated from the preschool into a
kindergarten for typically developing children, then that child continues in a
treatment program. The parents are not suddenly left with the impression that
they are on their own because their child is already too old to be in an intensive,
behavioral treatment program. The aging out issue is a criticism of many IBT
programs that tend to concentrate on the younger children and wash their hands
oftheolderchildreneventhoughthesechildrenmayrequiremoretreatment.
It’s a particularly common occurrence among government-funded programs
worldwide, where the sooner the children can graduate from IBT, the less money
the government has to spend.
With respect to the measure used by LEAP – the Learning Accomplishment
Prole (LAP) – this measure does not give a comprehensive assessment of
all relevant areas of developmentand,therefore,doesnot adequately assess
its own intervention strategies.Specically,issuessuchasIQ and behavioral
change are not assessed, and language assessment is limited to naming and
comprehension. In addition, LEAP claims to target social interaction, independent
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36
play, functional skills and peer teaching; however, none of these content areas
are assessed in the outcome study. The only areas assessed by the LAP are the
eightareasthattheyidentify(nemotorwritingandmanipulation, gross motor
object and body movement, cognitive matching and counting, and language
naming and comprehension). This measure excludes some very important
skilldecitandbehavioral excess areas. Furthermore, there is no evidence that
self-stimulatory or other maladaptive behaviors are targeted for elimination.
While LEAP uses strategies to prevent such behaviors, there is no mention of
how behaviorsaretargetedwhentheyoccur.Duetothenatureandfrequency
of these non-learning behaviors, it is essential that behaviors which obstruct
learning are controlled and, ideally, eliminated.
What kind of study would I like to see the school-based
IBT researchers do?
There are several important factors I would like to see in future outcome
studies on school-based IBT programs. More dataisrequiredtocomparethe
progress of subjects in experimental versus control groups, creating groups
with varied types and intensity of intervention. The dependent measure of
positive versus no positive outcomeneedstobedenedandoperationalized
moreexplicitly.Specically,theadditionaluseofIQ and language assessment
indicators would be helpful in further examining outcome, particularly in
groups of different ages. A measure which indicates the amount of progress
beingmade,evenbythoseindividualswhorequirecontinuedtreatment, must
be incorporated in future research. These variables would ideally be measured
by at least one independent evaluator who is blind to the assignment of subjects
to groups. In addition, factors such as treatmentintensity(homeandschool),
student-to-teacher ratio, dual diagnoses and age at treatment initiation need to
be controlled more stringently in order to determine the many factors which
inuencetreatment outcome.
Section One: What Works and What Doesn’t?
37
In terms of LEAP specically, new outcome data is required before any
conclusions can be made about the LEAP model and its efcacy.TheScientic
Review of Mental Health Practice had the following to say about LEAP:
“Although certain aspects of the LEAP program appear promising, the paucity
of the available research, and especially the absence of controlled research,
precludejudgmentsaboutitsusefulness.”16Oftheutmostimportanceis the
need for a control group in any further investigations.Thisisrequiredinorder
to determine the source of the changes found in the results. Also, it would be
necessary to provide an experimental design which includes a larger subject
pool of children diagnosed with autism by an independent source. Ideally,
these children would be assessed for baseline levels of ability using various
measures including IQ, behavior and more extensive language measurement.
These assessments should also be administered by independent evaluators who
have no knowledge of the experiment, rather than teachers or other individuals
directly involved with the experiment.
Who else recommends for or against the School-Based
IBT for the treatment of autism?
There are many organizations that recommend ABA throughout the child’s life
and in every setting. The Association for Science in Autism treatment describes
ABA as being effective across a variety of settings including school and home.17
In addition, the BehaviorAnalystCerticationBoarduseschildreninschool
settings as an example of the application of ABA.18 After examining the data, no
bonadescientistwoulddisagree with the delivery of school-based behavioral
treatment to treat the condition of autism.Thequestion, however, is whether
treatment should be designed by the school-based or home-based professionals
consulting with the parent.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
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So you’re still on the horns of a dilemma?
Ifthe question is where to enroll the child — in an ABA school or a home-
based program — the answer depends upon where the child can receive the best
program. The parent needs to determine whether the ABA school in the area
(ifitexists)isofahighquality.Ifnot,thenahome-based program may be the
only option, bringing in competent professionals from the community or, if that
isimpossible,then yinginprofessionals from a different region, or in some
cases, another country.
What’s the bottom line?
The scienticresearch to date collected on children who attend high quality,
school-based, Intensive Behavioral Treatment programs provides evidence to
conclude that their condition improved in school-based treatment settings and
thatalthoughthemostsignicantgains were made by those children who began
treatmentbeforetheageofve,olderchildrenmadesignicantgains as well.
Section One: What Works and What Doesn’t?
39
Offshoots of Intensive Behavioral Therapies:
Pivotal Response Training and the Natural
Learning Paradigm
What is Pivotal Response Training/the Natural Learning
Paradigm?
Pivotal Response Training/the Natural Learning Paradigm (PRT/NLP) is a
techniquetomotivateindividualswithautism to respond to multiple cues. PRT/
NLP targets an autistic person’s lack of motivation and tendency to concentrate
on one stimulusatthe expense of otherstimulior“thebigpicture”(termed
stimulus overselectivity) by targeting these two areas which are considered
pivotal. These behaviors are considered to be pivotal because the theory is
that changing them results in a change in many other behaviors.1 The goal of
the intervention is to provide an easy-to-implement strategy which can also be
used in the community.2 PRT uses some principles of behavior modication
to teach the person with autism. The components of the interventionare: 1)
ensuringattention;2)interspersingmaintenancetasks(tasks that have already
been mastered); 3) allowing the child to lead; 4) giving the child multiple
cue instructions; 5) providing reinforcement immediately; 6) providing
reinforcementcontingently(rewarding the personbasedontheiranswer);7)
providing reinforcement that is directly related to the behaviorortask,and8)
providing reinforcement for any goal-directed attempt at responding. PRT is
designed to discourage the individual from engaging in aggressive, self-injurious,
self-stimulatory and ritualistic behaviors; however, how these behaviors should
bedealtwithisnotspecied.TheNatural Learning Paradigm encompasses the
philosophy of Pivotal ResponseTraining,whichdenesthelearningaschild-led
in a non-demanding setting where Pivotal Response Training occurs.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
40
What evidence do the practitioners have that this
technique works?
PRT/NLP relies upon literature which studies the lack of joint attention behaviors
characteristic of children with autism3andtheramicationsofthelackofjoint
attention on the development of speech and language.4 Although there has not
been a single study comparing children in a comprehensive Pivotal Response
Training program to a well-settled behavioral treatment program(suchasLovaas
and colleagues created), Pivotal Response researchers have found a positive
relationship between very targeted interventions and an increase in speech.5
Although there are dozens of articles which relate to naturalistic teaching
and, by extension Pivotal Response Training, there are currently twelve peer-
reviewed journal articles providing outcome data on individuals with autism
who have been treated using PRT/NLP.4,6,7,8,9,10,11,12,13,14,15, 16 These twelve studies
concentrate on encouraging language through play, encouraging social behavior
and/or sociodramatic play or comparing the natural language paradigm versus a
more structured adult led approach, which they refer to as analog teaching. In
almost all the studies, the sessionswerevideotapedandsubsequentlycodedby
different researchers whose coding was compared to ensure consistency. This
safeguard was important because in some of the studies, peers or parents, not
professionals, were involved in sessions with the autistic child. In most of the
studies, the interobserver agreement(theagreementbetweenthoseresearchers
whocodedthesessions)wasrelativelyhigh,i.e.,inLaski et al. the interobserver
agreementdidnotdropbelowseventy-sevenpercent(77%)andattimeswasas
highasninety-eightpercent(98%).17
Eleven of the twelve studies were single-subjectcasedesigns(seethenextsection
for an in-depth discussion on SSCD)utilizingasmallnumberofchildren(with
the largest studyinvolvingtenchildren),mostofwhomhadadiagnosis based
Section One: What Works and What Doesn’t?
41
on a version of the Diagnostic StatisticalManual(DSM).Overthelasteighteen
years, proponents of PRT/NLP have published dataonatotaloffty-onechildren
who were involved in very short term and/or low intensity experiments(often
lasting no more than thirty minutes a week over three months and often less than
that).Themajority of childreninthesestudies were over three years of age,
withmanybetweentheagesofveandtenyears,someofwhomwereveryhigh
functioning.15,16 Based on these children, results have been reported that children
with autism utilizing PRT/NLP have more prosocial behavior, improvements in
social skills(andplay),andanimprovement in speech and language. Although
these results sound encouraging, the studies as a whole have several serious
drawbacks. Due to the complexity of the studies and the various claims made,
each claim will be discussed separately.
Is Pivotal Response Training/Naturalistic Learning
Paradigm more effective for language acquisition?
PRT/NLP researchers and proponents claim that naturalistic teaching, when
used for speech and language, is more effective than the traditional research
supporting discrete-trial training.16,17,18,19,20 This may have occurred with the
subjects in their experiments; however, this claim cannot be generalized to the
population of children with autismfortworeasons:1)thesmallnumberofchildren
per study(usuallytwoor threechildrenineachdesign)istoofewchildrento
make generalizations about the effectiveness of PRT/NLP for the overall autistic
population and none have any follow-up after the study to see whether the
observed gains were permanent;*2)thedata from PRT/NLP is based on children
with varying degrees of language impairment who have had discrete trial training
*There is one study where the researchers retrospectively studied intervention data from children who
did well or poorly in prior treatment. Unfortunately, they used retrospective pre-intervention archival
data and compared it to the postintervention data rather than following the children from their study
longitudinally.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
42
learning histories prior to being part of these studies. Naturalistic or incidental
learningispredictedtobemoreefcientforchildrenwhohadachievedsome
competency in language and/or who had extensive amounts of past treatment
using discrete trial training. The reasoning here is the child has already achieved
the skills needed to learn in a more natural setting.15 This is an important point
because the suggestion that comes out of the PRT/NLP literature is to abandon
one of the most important techniquesforsomechildrenintheABA toolbox
-- discrete trial training. This would be a severe mistake with a child who
appears to be completely unteachable (which is common for children with
autistic disorder),andforwhichdiscrete trial training may be the only option
at the beginning of a treatment program.
Onestudy4 compared naturalistic teaching with more structured teaching to
determine which was more efcient. They found that naturalistic teaching
was much more motivating than structured teaching. However, this study has
a fundamental awwhichseriouslyunderminestheresults of the study.* In the
naturalistic condition, the clinician used highly-motivating three-dimensional
items to teach the target sounds; whereas, the analog condition used picture
cards with the items on the cards to teach the same sounds, and then praised the
child and reinforced the child’s correct response with food or a desired object.
This research demonstrates that using a desired object to teach a sound(orany
conceptforthat matter)willbemorepowerfulbecausewhatisbeing taught
is intrinsically rewarding. However, it does not demonstrate that naturalistic
teachingismoreefcient.Thisstudy needs to be done with the clinician in both
conditions using the highly-reinforcing three-dimensional items to teach, in both
*The way analog vs. naturalisticteachingisdenedconfusesthefundamentaldifferences.InKoegel, Koegel
andCarter(1999),theydenethedifferencebetweennaturalistic and analog teaching very strictly, making
the point that in analog teaching the child has no choice.14 There is, however, no contradiction between
analogteachingandgivingachildachoiceoftheactivityheorshewouldliketodorst.Thedifference
has more to do with the child-led versus adult-led nature of the actual teaching trial.
Section One: What Works and What Doesn’t?
43
the structured(analog)andnaturalisticconditions.Otherwise,thedifferences
in teaching techniques are being confused with differences in: 1) degree of
reinforcement,and2)therelevanceofthereinforcer to what is being taught.*
Do children with autism emit less disruptive
behaviors with PRT/NLP?
The second claim made by proponents of PRT/NLP is that children emit less
disruptive behaviors using the naturalistic teaching paradigm.21 It is plausible
that initially there would be a difference between adult-led and child-led therapy
in terms of disruptive behavior. It makes perfect sense that behavior will not
be a concern if no demandsaremadeofachild.However,therealquestion is
whether these children will progress to the point where they can cope in situations
where their ideas or way of doing things is not adopted, and be able to learn
todo whatothersrequireofthemwithout emittingdisruptive behavior, as all
typically developing children are expected to learn from an early age. Another
point worth emphasizing is that in good analog teaching, disruptive behaviors
should not occur on a regular basis even when demands are placed on the child.
I suggest that the researchers have inadvertently compared a naturalistic learning
environment to a poor analog teaching environment where the reinforcement
levelsareinsufcient.Inotherwords,thetwodifferenttypesofprogramswere
ofadifferentquality.Theycomparedahigh-qualitynaturalistic-teachingprogram
withaverypoor-qualityadult-ledanalogprogram.
Aspreviouslymentioned,thelearninghistories(previoustypesoftreatments)
ofthesechildrenneedtobetakenintoaccount.Onesetofresearchers describe
*For this studytobevaluable,thereshouldbefourconditions:1)analog condition, relevant reinforcer;2)
analog condition, irrelevant reinforcer;3)NLP condition, relevant reinforcer,and4)NLP condition, irrelevant
reinforcer. Although we can predict that condition four will be the least successful, it is not clear whether
conditiononeorthreewillbemoreefcient.Inshort,thevariableofreinforcer needs to be controlled.
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achildwhoactuallysays“Nocards.”22 This indicates to me that this child has
experienced poorly delivered therapy which has created an aversion to learning.
A poor therapy experience prior to the current study may have seriously biased
the results of that studyaswouldanychild’spriorlearninghistory(oneofthe
issues researchers using single-subject case designs studiesmustaddress).
Do children with autism increase their social and play
skills with PRT/NLP?
There have been a few studies8,9,10,11,12,16 which attempt to use PRT/NLP to increase
the ability of autisticchildrenintheseareas.Onestudy has been published in
two separate articles, one concentrating on language and toy play,11 the other
observing social behavior.12 Both of these articles appear to be a replication of the
earlier publishedndings.8 This study, conducted on two children with autism,
and two typically developing peers, reports positive changes in social language
and play skills. The children were ten years old and had language abilities over
three years of age prior to entering the study. Although their language ability
is not at age level, it is at a degree much higher than many young children with
autism, so their skills might not be representative of children with classic autism.
This was also the case of a more recent study which used two children who were
eight and nine years of age16 (treatmentprogramsforchildrenwithautismtypically
begininthetoddleryears).
Anadditionalquestion concerns the validity of ndings regarding play. These
children with autism may have memorized repertoires that they learned from
typically developing children when in therapy, and then use when playing with
another group of children. In other words, creative pretend play does not occur.
Although this criticism may seem hypercritical, and I think that children with
autism may benet by memorizing a number of scripts to use while playing
Section One: What Works and What Doesn’t?
45
with peers, it is important to differentiate whether the child is reproducing play
repertoires or whether he or she is truly engaged in pretend play(thetwocanbe
differentiatedbytheuniquenessofeachsession without peer prompting).Two
alternative hypothesestoexplaintheresultsarethat:1)anautistic child may be
incorporating a peer into rigid, role playing, which is not about joint attention or
truesocialengagement,butsimplytheuseofapeerasa“tool”forahigherlevel
of self-stimulatory orrepetitivebehavior,or2)thechildmaybeusingmemorized
scripts which are activated when particular toys are present. In addition, one
study counted the number of play date invitations made after the intervention.
This measure may have more to do with the parent’s ability to be reinforcing to
the typical peers than any actual increase in friendship.16
Another article published by Stahmer10 was far superior to the above studies
and allows us to unravel the complexity of the ndingsonplay. This study
used a control group who provided language training, had more extensive
dependent measures,madesuretheobserverswere“blind”totheconditionof
the participants and reported the statisticalsignicanceof theresults(a “p”
value).Animportantcontributionofthisstudy is the researcher’s honesty when
she suggests that for individuals without a certain level of language ability, the
intervention may not be developmentally appropriate.23 Stahmer discusses one
child whose stereotyped play interfered with his learning and noted that the
“children with the best language skills were the most creative and spontaneous
during play.”24 This is an illuminating point because this data demonstrates that
if Pivotal Response Training does ameliorate autism, it is only so for a high-
functioning subset of children or a subset of children who have reached a certain
level with well-settled IBT programs. Stahmer’s research is important because
it introduces the concept that PRT/NLP may be useful for a certain subset of
children with autism but not effective(orpremature)foranothergroupofchildren
whodonotpossesstheprerequisiteskills.
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Do skills learned through PRT/NLP generalize across
settings and people?
The ability of children with autism to generalize play skills based on this
treatment methodremainsdebatable.Itis still an open questionwhether the
childrenwhobenettedfromPivotal Response training in the above-mentioned
studiesalreadyhad(priortoPRT/NLPtreatment)manyoftheskills needed to
learn and generalize symbolic, complex and creative play. We are still uncertain
regarding whether it was the method of intervention or rather the children’s
readiness to generalize that made the difference, if indeed, these children did
actually generalize play and social skills at all.
The claim that PRT/NLP skills will generalize across settings and people is
more convincing when the consequence ofusing language is reinforcing. To
illustrate, if a child learns to ask for juice and receives juice every time he asks,
the data suggest that this skill will generalize across settings. Whether or not
alessreinforcingrequestwillgeneralizeisstillanopenquestion.Onestudy25
attempts to address this problem by gradually changing hidden reinforcing items
in a bag to less preferred ones, without affecting the spontaneity of the child
asking,“What’sthat?”referringtothehiddeniteminthebag.Whetherornot
thisquestion will be a permanent part of the child’s asking repertoire down the
road is unknown, although it is plausible that this skill may be maintained as
long as the reward is unpredictable. Nowhere is there any compelling evidence,
however,thatthisquestion-asking skill will generalize more or less successfully
if it were taught using an analog method(aslongastheskillweregeneralized
afterbeingtaught).
Section One: What Works and What Doesn’t?
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What does the therapy actually look like?
PRT/NLP is described as the use of “loosely controlled environments [e.g.
a playground] and that utilizes shared control [e.g. turn taking] and multiple
exemplars [e.g. many toy materials].”26 Techniques such as turn-taking
opportunities, working on mastered skills and gaining the child’s attention are
used to set the child up for success. Parents are trained to use these techniqueswith
their children to encourage language development and use. The three variables
that structurethelearningsituationaredescribedinthePRT/NLPmanualas:1)
thechildisgivenaninstruction,question or spontaneous opportunity to respond;
2)thechildresponds,and3)thechildisgivenaconsequence.27 Although this
sounds very similar to the traditional one-on-one behavioral treatment procedure,
thenaturalconsequenceoftheinstructionoropportunityisofimportance.To
use their illustration: a child is cold while playing outside; the mother tells the
childtoputonacoat,andthechilddoes.Thenaturalconsequenceisthatthe
child plays outside again, but this time he feels warm.28Naturalconsequences
such as those illustrated above can be highly motivating and, therefore, useful
whenteachingandmaintainingaskillastherewardisalwayspresent(inthis
case,warmth).
Would I try it on my child?
If my child were recently diagnosed, I would not rely upon PRT/NLP to ameliorate
her autism due to the lack of data reporting efcacyforyoungchildren who
are not yet speaking. This is an example of a promising area of research that is
leaving the laboratory too early and being incorporated prematurely by parents
and educational systems prematurely. Because I wanted to provide my child
with the most evidence-based treatment, PRT/NLP would not have been my
choice. That said, in established, well-settled behavioral treatment programs,
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natural consequencesthat arereinforcingshouldbeusedwheneverpossible.
This principle is a foundation in the PRT/NLP literature.
What else do I think?
Most of these studies do not sufciently rely upon standardized outcome
measures. The behavioral outcomes are generally measured by researchers who
are part of the study as are the emotional and social outcomes(withtheexception
of the occasional study where they use the Vineland Adaptive Behavior Scales —
atestwhichlooksatavarietyofbehaviors). In addition, the social and language
behaviors(theoperationalization of the dependentmeasure)occasionallyuse
researcher observationalone.Thisisnotanadequateorunbiased measure of
treatment outcome and there is no indication within some of the studies about
who is rating the observations. In addition, one study includes a measure of
teacher reported social behaviors within the classroom.29 In my view, this is
a biased measure of change because it is not clear how much information the
teacher has about the study(asshewasinstrumentalinchoosingpeers for the
study).30
The authors of the PRT manual claim that it is designed for any child, including
those who are nonverbal. This conclusion is premature because subjects in all of
the studies had baseline language abilities that were higher than those typically
found in the population of young autistic children. In contrast, Stahmer(1995)
suggeststhatforindividualswithoutsufcientlanguage ability, the intervention
might not be developmentally appropriate.10 In other words, if a child is not
speaking yet, it is too soon for PRT.
This intervention approach emphasizes that the task must be child-led. The
manual states that the child must be able to choose the topic of an activity and
Section One: What Works and What Doesn’t?
49
when to stop the activity. Concurrently, the authors state that disruptive behavior
is not acceptable and parents must take control until the child is capable of non-
disruptive behavior. It is not clear how this philosophy meshes with the child-led
philosophy and how parents are to “take control”inthisframework.Itislikely
that a child who has had no interventionatall,andsubsequentlyhasfewskills,
will be very resistant to initiating or remaining involved in an interaction.
Another issue of concern for the child-led approach is the lack of motivation
whenthematerialisdifcultorintrinsicallynon-reinforcing.Itisunlikelythat
achildwillinitiatelearningdifcultconcepts, as he or she has no understanding
of them and the concepts might not be relevant. In addition, when a child is in
school, that child will be expected to participate in classroom learning, as do his
peers. This will be an additional challenge unless the child has learned how to
sit and learn material that is perhaps not intrinsically motivating. In addition,
the application of this method in a mainstreamed classroom is problematic. The
requirementthatpeers undergo extensive training in order to learn the strategies
proposed by PRT/NLP is highly unrealistic.
Another problem with this approachis“wheretobegin.”Theauthorsrecommend
that instructions given to the child should be multi-cued instructions. Children
with autism do not typically understand multi-cued instructions. Indeed, they
need to be taught how to understand multi-cued instructions and there is no
techniqueofferedtoguideparentsinhowtoteachthistotheirchildren.Prior
to using Pivotal Response Training, it can be argued that children need to be
taught a variety of single instructions before they are expected to understand
multi-cued instructions.
ThelastpointIneedtomakeregardsefciency.Ifwearerequiredtowaitfor
children with autism to initiate everything they need to learn, I am concerned
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that we will lose precious time that early interventionrequires,andthefuture
ofthesechildrenmaybecompromised.Inaddition,itisextremelyinefcient
tondadirect,naturalconsequenceforeverythingthatthechildmustlearn.
Anotherdifcultywith this offshoot of behaviorism is that it smacks of the
“parent as therapist” ideology of how autism should be addressed, wherein
parents,asopposedtoprofessionals,delivermostorallofthe“treatment.”6,31,32
Laski et al. actually report on a parent-training as a positive outcome when
they state:
This study presented a promising new parent-training program designed
to increase autistic children’s Verbal Behavior. Post treatment increases in
parents’ requests for vocalizations from their autistic children were observed
in the generalization settings. Additionally, parents showed evidence of
generalizing these behaviors with the siblings of their autistic children. These
generalization effects are encouraging in that they may provide additional
supportofthe motivating qualities of natural language programs for both
parent and child...33(emphasisadded).
It goes without saying that it is not the parents with the neurological disorder,
it’s their child. The assumption that increased parent vocalization will cause
increasedchildvocalizationisnotsufcientlysupportedbydata. In addition,
the expectation that the parents must be responsible for the therapeutic treatment
of their child plays into the rationing of health care for children with autism,
which governments will happily entertain if they receive academic justication
for it.*
*The concept of parent as therapist is particularly offensive when one considers the fact that parents of
children with autism also have to make a living like everyone, at the some time as being responsible for
their autistic child’s progress. I’d like to suggestthatthefree-wheeling1950s“LeaveittoBeaver”family
unit is rare in 21st century modern society and would like to see any of these researchers be productive
in their academic careers undertaking the role of therapist for their autisticchildren.Onlyintheeldof
autism are our children considered so unworthy that the responsibility of treatment falls on the family
instead of on professionalsintheeld.
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51
What kind of study would I like to see the researchers do
on Pivotal Response training and the Natural Learning
Paradigm?
There may be a place for the use of PRT/NLP in the education of individuals with
autism; however, exactly where and/or if it can be used effectively needs to be
established. For individuals who have some language ability and are able to learn
somewhatincidentally,i.e.,theydonotrequiremasstrialsofrepetition in order
to retain certain pieces of information, Pivotal Response behaviors may be a good
method of prompting generalization of desired behaviors. Research to determine
exactly who, and how much, this approachcanhelpisdesperatelyrequired.It
also needs to be determined how effective this intervention is when compared to
other treatments. I would like to see a between-within subject design utilizing
a comprehensive protocol based on the PRT/NLP paradigm as compared to an
intensive, well-settled behavioral treatment program. In addition, it is crucial
that the PRT/NLP researchers use standardized language and IQ measures prior
to and after the study to determine to what extent autism has been ameliorated
using their protocol.TheauthorsclaimthatoneofthebenetsofPRTisthatthe
behavior will occur in natural environments; however, this has yet to be supported
byhighquality,long-termevidence. Clearly, a well designed, longitudinal study
with large numbers needs to be conducted prior to recommending this method
to anyone responsible for the treatment of children with autism.
Who else recommends for or against Pivotal Response
Training as a method for the treatment of autism?
The Developmental BehavioralPediatricsOn-line(asitecloselyconnectedwith
the AmericanAcademyofPediatrics)hasreviewedPRTandstates:“Although
each of the components of the Pivotal Response intervention model has been
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52
extensively tested, there are no randomized trials comparing PRT to any
other intervention model. The only published follow-up study was done
retrospectively.”32,34 Other than that, PRT/NLP has been protected from
criticism as it falls under the general rubric of ABA which is a well-established
discipline.
So you’re still on the horns of a dilemma?
I would recommend that prior to embarking on a program reliant solely on PRT/
NLP, that you have your child in a well-settled behavioral treatment program and
await more data which demonstrates that a comprehensive behavioral treatment
program using PRT/NLP is more effective than a traditional behavioral treatment
program. That said, the incorporation of natural consequenceswhenpossible
into a well-settled behavioral treatment program is certainly a powerful way to
reinforce skills or positive behavior.
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence that Pivotal
Response Training/The Natural Learning Paradigm is globally effective in
ameliorating the condition of autism. There is some very preliminary evidence
to suggest that this method can be used to target symbolic play skills in some
individuals with autism who possess above average language abilities. However,
further studies with larger sample sizes and standardized testingarerequiredto
appropriately evaluate the method.
Section One: What Works and What Doesn’t?
53
Offshoots of Intensive Behavioral Therapies:
Positive Behavioral Support
What is Positive Behavioral Support?
Positive Behavioral Support (PBS) is behaviorism guided by philosophy.
Practitioners of this methodclaimthatitisaneweldthathasitsrootsinapplied
behavior analysis, the inclusion movement and person-centered values.1 The
philosophy promotes the inclusion of people with disabilities in mainstream
society. By re-engineering the environment, it is claimed by PBS proponents that
theindividual’squalityoflifeisenhancedandthereby,behavior problems can be
minimized. What appears to differentiate PBS from other forms of behaviorism is
the promotion of educational systems to take responsibility in the re-engineering
of environment and the practice of PBS. Proponents claim that the elimination
of problem behavior is not the direct focus of PBS, but rather, a fortunate by-
product. They state: “the primary intervention strategy involves rearranging the
environmenttoenhancelife-styleandimprovequalityofliferatherthanoperating
directly on reducing problem behaviorperse.”2 They differentiate PBS from
other forms of behaviorismbytheir“Life-span Perspective” and suggest that
meaningful change may be slow and, in fact, may take decades.
Positive Behavioral Support is differentiated from traditional behaviorism by the
emphasis on “ecologicalvalidity,”whichproponentsdeneastheapplicability
of the science to real-life settings. In other words, their vision is for parents,
teachers and job coaches, rather than professionals, to practice PBS. An additional
component of the PBS philosophy is “stakeholder participation”whichtheydene
as a consumer-driven, rather than an expert-driven, applied science. In other
words, the consumer is supposed to become an active participant in delivering the
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PBS treatment. The third concern of PBS practitioners is that the interventions
be measured not by their “objective effectiveness”butratherbytheimpacton
theperson’squalityoflife(e.g.,isthepersonhappyandinanacceptableliving
arrangement).
What evidence do the practitioners have that this
really works?
Here is where Positive Behavioral Support becomes somewhat tricky to evaluate.
Since PBS practitionershavethemselvesoftencomefromtheeldofapplied
behavior analysis (ABA), some spending most of their academic career in
thiseld,itisverydifculttoseparatemuchoftheresearch they cite that has
been done on ABA from the research that has been done on PBSspecically.*
A comprehensive database search netted sixty-ve (65) articles on Positive
Behavioral Support (attempting to differentiate PBS from ABA). Of these
sixty-vearticles, there were only six articles presenting experimental data of
any kind on children with autism.Ofthosesixarticles, one study concerned
parent perceptions of an early intervention program,3 seven case studies were
presented in four articles,3,4,5,6,7,8 one single-subject case design demonstrated a
decrease in disruptive behavior,7 and one article reported on parent-professional
collaboration.8 Aside from these articles, all other articles to which PBS lays
claimactuallyowfromtheeldofABA. Another concern regards the time-
line for progress; PBS proponents evaluate changes made along the life span.
Understandably,itisverydifculttoevaluatea treatment’s value if its effect is
observable only over decades.
*Proponents seem to have expropriated decades of research in applied behavior analysis as their
ownwhentheyaredemonstratingtheefcacyofanintervention.12
Section One: What Works and What Doesn’t?
55
What does the therapy actually look like?
The difference between PBS and ABA is not in what you see, but rather, in the
design of the interventions. The process that the PBS practitioner goes through
is much the same as that of a behavior analyst, although the terminology is
different. The PBS practitioner does a Functional Behavioral Assessment(FBA)
to determine the function of the child’s behavior and then designs an intervention
to reduce or, ideally, prevent the behavior from occurring again. However,
the behavioral intervention that is chosen may or may not differ from that of a
traditional behavior analyst, depending less upon what might actually be the ideal
intervention, and more upon the PBS view of the feasibility of the intervention in
the“realworld.”Inotherwords,thebehavior to replace the problematic behavior
must be: “acceptable to caregivers; appropriate to the setting; within a person’s
skillsetoreasytolearn,”9 and appears to be more concerned with philosophy
rather than science-based measures of treatment outcomes.
Would I try it on my child?
I have refused, and am vigilant, to protect my daughter from anyone with this
treatmentperspectivewhethertheybeanautism“professional”orateacher.In
my view, PBS is a case of political correctness interfering with science. I want
to ensure that my child’s treatmentisnotinuencedby“resources”inthesystem
atanyonetime(orlackthereof—mostoftenthecase).Specically,Idonot
desire that the educational systemberesponsibleforher“support”becausethis
rigid,calciedsystem has shown itself time and time again to be a receptacle for
incompetence when it comes to children with autism.10,11 School districts often
fund programsbaseduponthePBSphilosophybecauseitis:a)politicallycorrect
and in line with the prevailing educational philosophy for typically developing
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students,andb)isinexpensive,asuntrained(orinsufcientlytrained)employees
are expected to implement the interventions.
It is crucial that all the tools in the ABA toolbox are at the disposal of the
professionals who design and implement my child’s treatment program, and
notonlytheonesthathavebeendeemedas“acceptable”or “philosophically
pure”accordingtotheschooldistrict,butalsotheonesthatmaynothaveany
relevance in my child’s life or her autism treatment needs.
When philosophy, rather than data,inuencesdecisionsitis harmful. When
my child was very young, prior to her being mainstreamed in school, she
requiredanintensiveone-on-one ABA treatment regime to reach the point where
mainstreaming was desirable and possible. Without that work, her mere physical
proximity to typically developing children would have been of no use. PBS
might make everyone in the system feel as if they are good people; however,
children with autism need to progresstothepointwhere:1)mainstreaming is
actuallyofbenettothem,and2)theyaretreatedwithdignityinamainstream
setting and not treated like the token disabled person whose disruptive nature is
simply tolerated due to political correctness. This is all too often the case when
philosophy, rather than science, guides decisions.
What else do I think?
In my opinion, Positive Behavioral Support is a very dangerouseldforchildren
with autism. The reason this philosophy is dangerous(asidefromtheobvious
which is research being subjugated by a form of religion – and I think PBS is
atypeofreligionofpoliticalcorrectness),isthatitdenieschildrenwithautism
access to proven, science-based treatment methods.Frankly,Indeventheterm
PositiveBehavioralSupport offensive.The factthatitis“positive”behavior
Section One: What Works and What Doesn’t?
57
support carries a presumption that the PBS practitioner is different and apart from
his“evil”ABA behaviorist counterpart. In fact, traditional behavior analysts
have very stringent ethical guidelinesthatpractitionersare requiredtofollow
inordertobecertied.12 All academic research done on human subjects must
pass university ethics boards and any clinical treatment that may be considered
ethicallyquestionable cannot be conducted by reputable practitioners without
judicial oversight. It is no longer the freewheeling 1950s where many ethically
questionableactivitiescantakeplacebehindthewallsofgovernment institutions
in the name of therapy. There are laws now in place which protect disabled
people from direct harm.
I also nd it interesting that PBS practitioners see no contradiction between
inclusion and mainstreaming, and redesigning the environment to accommodate
children with autism. To illustrate, if we do not teach children with autism to be
able to cope with the general chaos of life, how are we going to have them go
into a shopping mall and function properly? Asking the mall administration to
turn off the music in the elevators prior to a child entering is not practical!
I live in a region where Positive Behavioral Support is used extensively by
school districts and is wholeheartedly supported by government. This region
happens to be an area where autism policy is functionally in the 1950s in terms
of efcacy.Consequently,thereisalargeandsteadyexodusofparentsoutof
the public school system into the private system, or home-schooling, due to this
globally ineffective and harmful philosophywhichmasqueradesasanapplied
behavioral science.
OnenalpointonPBS:whenonereadstheliterature from Positive Behavioral
Support, autism appears to be an entirely different disability. These children
seem to be very mild, and the behavior problems are all easy to control, as long
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58
astheenvironmentis“re-engineered.”Childrenwithself-injurious behavior do
not seem to be a challenge for this group. Perhaps children who participate in
PBS studies are not classically autistic. My caveat regarding the type of children
participating in PBS studies is also supported by Durand and Rost13 who truthfully
caution those reading the literature on PBS that there may be a selection bias in
the subjects for the studies that they do conduct.
What kind of study would I like PBS researchers to do?
I think that this group of researchers should abandon the anti-science, anti-
intellectual discipline they have developed. They should return to the eld
of applied behavior analysis, compete with researchersinthateldandhave
their PBS research properly scrutinized and evaluated by their ABA academic
peers.
Who else recommends for or against Positive Behavior
Support as a method for the treatment of autism?
MulickandButter(2005)14 provide a very useful, in-depth critical analysis of
Positive Behavior Support that I highly recommend prior to even thinking about
using this so-called autism treatment method. Mulick and Butter lay out the
complete history of Positive Behavior Support and expose the pseudo-science
of PBS in detail.
So you’re still on the horns of a dilemma?
If you are still not sure whether your child should be in a behavior management
program based on Positive Behavior Support, I would encourage you to ask
the purveyors of PBS how they intend to measure short-term outcomes. You
need to make sure that these outcomes objectively measure the child’s progress
Section One: What Works and What Doesn’t?
59
(measuringbehavior and IQ)andnottheapprovalratingoropinionsofothers
about how the child is progressing. In addition, it is crucial to ensure that the
goalsareshort-termandsubstantive,ratherthanfuzzy,long-termquality-of-life
goals which can be easily manipulated to appear rosy.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence to conclude that PBS
is anything more than a philosophyratherthanascience.Consequently,thereis
no evidence to demonstrate that PBS ameliorates the condition of autism.
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Section One: What Works and What Doesn’t?
61
Offshoots of Intensive Behavioral Therapies:
Verbal Behavior
What is Verbal Behavior?
In 1957, B.F. Skinner(thegrandfatherofbehaviorism)publishedabookcalled
Verbal Behavior.1 In this book, Skinner applied his ideas about learning to
Verbal Behavior.Specically,SkinnerdenedvarioustypesofVerbal Behavior
that humans exhibit. This typology improved behaviorist understanding of
how different parts of language are developed and enabled them to teach the
various functions of language and set up an environment to promote the use of
these parts of language. Sundberg and Partington(1998)takeSkinner’s ideas
and apply them to teaching language to children with autism in a user-friendly
formatdesignedforthenonacademicaudience.Theydenethevarioustypes
of verbal behavior and provide a discussion of each language repertoire in their
book, Teaching Language to Children with Autism or Other Developmental
Disorders. They describe these language repertoires as: receptive(complying
with or following directions);echoic(repeatingwhatothershavesaid);imitation
(copyingactions);tact(labelling);mand(asking);RFFC- Receptive by Function,
Feature,and Class(identifying items basedon theirdescription); intraverbal
(answeringquestions on a more conceptuallevel);textual(readingwords),and
written(scribingwordsthatareheard).2
Put simply, Verbal Behavior Therapy is an attempt to utilize the principles of
behaviorism to teach children with autism to communicate. The concept of
verbal behaviorhasexistedforapproximatelyftyyears;theprimaryimpetus
of verbal behavior is the application of the ideas of B.F. Skinner to children with
autism. Although Sundberg and Partington have been working on these ideas
since approximately 1978, this area has become increasingly popular in the last
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
62
ten years because ideas regarding how to teach language to children with autism
are presented in a more accessible format than was previously available. In
addition, there has always been a need to target languageacquisitionforchildren
with autismasthesechildrenhavesignicantlanguage decits.
What evidence do the practitioners have that this
really works?
Here’swherethedifcultybegins.AlthoughtheideasofSkinner regarding verbal
behavior are compelling and theoretically rich, the testing of these ideas has lagged
far behind. Unfortunately, what little data does exist is not necessarily on children
with autism.3 A comprehensive literature search using all the major academic
databases did not net even one study to provide evidence that a comprehensive
Verbal Behavior program would signicantlyimprove the language ability of
children with autism, and/or facilitate more comprehensive or global improvement
in their condition. However, Verbal Behavior researchers have done studies
concentrating on evoking manding (asking)4,5 and increasing vocal behavior.6
This area will hopefully bear more fruit with additional studies.
What does the therapy actually look like?
The teaching sessions are initially one-on-one(onetherapisttoonestudent)and
they look very similar to traditional, well-settled behavioral treatment programs.
Prior to working with the child to teach the various parts of language, there
is1) a language assessment using a Behavioral Language Assessment Form7
that determines which skills the child has mastered and which skills need to
bedeveloped, and 2)an emphasis onmakingthe therapeutic setting fun and
reinforcing.TherstskilltheygenerallyteachisManding(whichisteaching
thechildtorequest).Typically, the therapist has an item the child wants but
needs help to acquire. This system can be used with children who cannot
Section One: What Works and What Doesn’t?
63
communicate vocally by using sign language or an augmentative communication
system.Childrenaretaughttorequest items they see and then items they cannot
see. They are generally taught to mandusingsinglewordsatrstevenwhen
they are capable of using full sentences. Eventually, the child incorporates more
words into the sentence and is able to mand without promptingorarticially
settingupareinforcingsituation.Inotherwords,thechildrequests because he
trulydesiresorneedssomething.Overtime,otherpartsofVerbal Behavior are
taught.
From my reading of the verbal behavior material, there does not seem to be a
consensus on how many hours per week a Verbal Behavior Therapy program
should run. Data is taken throughout, generally using a data collection system
designed by the pioneers of the application of Verbal Behavior, Sundberg and
Partington.7 For a user-friendly description of Verbal Behavior Therapy and
samples of the data, the Mariposa School has created an easy to understand
training manual.8
Would I try it on my child?
Although I would not place my child in a program that worked solely using
Verbal Behavior Therapy, if she were younger I would be open to applying the
VB empirically supported areas to her program. I see very little difference in
some of the techniquesusedintraditionalIBT programs, although the terminology
is different. At this point, my daughter already has amassed the skills that have
empirical support from the Verbal Behavior literature the traditional way, in a
best practices, outcome-based behavioral treatment program. Therefore, at this
point those areas would no longer be appropriate for her based on her level of
language development.
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64
What else do I think?
Practitioners in the area of Verbal Behaviordonotappeartosufcientlyaddress
the issue of behaviors that interfere with learning. Indeed, there are those who
believe that autism is primarily a disorder preventable with Verbal Behavior
Therapy.9. 10 Their thesis is that the various nonsocial(oranti-social)behaviors
we see exhibited by people with autismarearesultofthe“core”decit,whichis
a disorder of Verbal Behavior. Drash and Tudor(2004)state:“Conceptualizing
autism as a contingency-shaped disorder of Verbal Behavior may provide a new
and potentially more effective paradigm for behavioral research and treatment in
autism”11 Although this is an interesting proposition, it has not yet been supported
by data; therefore, it is premature for parents to be told by those providing Verbal
Behavior Therapy to end all other forms of behavioral treatment. It would be
much safer to incorporate those techniqueswhichhavesomeempirical support
(albeitlimited)suchastheresearch done on the teaching mands for information.5
That said, based on the limited empirical support, it is important to track the child’s
progress with datatomakesurethatthechildisaquiringmorelanguage.
What kind of study would I like to see the researchers
working on Verbal Behavior do?
This is an exciting, emerging area in which there is much work to be done.
OakandDickson(1989)12 did a review of the literature and found very little
empiricalsupport.Otherresearchersinthiseldarecallingformorestudies to
beconducted.IwasparticularlypleasedtondanarticlewrittenbyCarrand
Firth(2005)13 calling for additional empirical support. These academics suggest
(andIwholeheartedlyagree)thatthereneedstoberesearch done comparing the
UCLA model(pioneeredbyLovaasandcolleagues)andtheVerbal Behavioral
model as there is no documented outcome from comprehensive Verbal Behavior
Section One: What Works and What Doesn’t?
65
programs. More research needs to be conducted on individual Verbal Behavior
techniquesinorderforSkinner’s theory of Verbal Behaviortoberenedtoreect
the empirical research done on this population of children.
Who else recommends for or against Verbal Behavior as
a method for the treatment of autism?
IcouldnotndanyorganizationswithanofcialstanceonVerbal Behavior as
itisclassiedundertheumbrellaofABA, which is a science-based discipline.
Therefore, it is for the consumer to rely on the community of academics in the
eldofapplied behavior analysis to call for additional research, as did Carr and
Firth(2005).
So you’re still on the horns of a dilemma?
If you would like to incorporate Verbal Behavior into your behavioral treatment
program, make sure that you monitor the progressofthechild,quantifyingthe
gains using cold, hard data. In addition, the child should be assessed using
psychometric testing on a yearly basis by a psychologist with no connection to the
practitioners of Verbal Behavior. Moreover, it is important to monitor behavioral
gains to see whether progress in Verbal Behavior is having a positive, neutral or
negative effect on other behaviors indicative of autism. Monitoring behavior is
crucial: if the child’s behavioral gains begin to erode, it is important to recognize
the behavioral backslide and take steps to reverse the trend.
What’s the bottom line?
Based on the scienticresearch to date, there is no data to suggest that a pure
Verbal Behavior program will ameliorate the condition of autism; however,
certain techniques used by practitioners promoting Verbal Behavior do have
limited empiricalsupport.Inshort,thiseldisstillemerging.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
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Section One: What Works and What Doesn’t?
67
Offshoots of Intensive Behavioral Therapies:
Fluency Training
What is Fluency Training?
Fluency can be dened most simply as accuracy plus speed, or quality plus
pace.1 Proponents of Fluency Training argue that the way traditional behaviorists
measurewhetherapersonhasacquiredaskillmusttakeintoaccountifthestudent
provides the correct answer or not, and how long it takes the student to present
thecorrectanswer.Toillustrate,ifastudentisasked,“What’syourname?”and
ittakesthestudentveminutestoanswer,doesthestudentactuallyhavethe
skill?Theanswerhereisobviously“no.”
PrecisionTeachingis theeld that studies and applies uencytechniques to
learning.This eld hasinuenced many areasoflife, including educational
systems(specicallyintheareasofnumeracyandliteracy),competitiveathletics,
and organizational productivity.2 Precision teaching is not new. In fact, many
of us have been taught our multiplication tables using this very technique.Those
researchers and practitionersintheeldofPrecision Teaching have found that
behavioral uencyisassociatedwithpositivelearningoutcomes.Binder(1993)
describes these general outcomes as “retention and maintenance of skills and
knowledge; endurance or resistance to distraction; and application or transfer
oftraining”3
Although the vast majority of research has been conducted on non-autistic
students, this teaching method is now used by some on children with autism.
Some practitionersintheeldofapplied behavior analysis have incorporated
uencytechniquesintheircomprehensivetreatment programs for children with
autisminareaswheretheskilllendsitselftomasterythroughfastandfrequent
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
68
repetition. Otherpractitioners have abandoned most other tools in the ABA
toolbox (including discrete trial training), and rely solely on uency-based
instruction.
What evidence do the practitioners have that this really
works?
TheeldofPrecisionTeachingisquitebroad,layingclaimtomanypeer-reviewed
journal articles published on Fluency; however, data published on the use of
Fluency for children with autism,specically,isscarce.Fiveyearsagotherewas
almost no data on Fluency and autism.Sincethattime,approximatelyftypapers
and poster presentations have been made at ABA conferences; the proponents
of Fluency have established a peer-reviewed journal, and they are also taking
submissions from those collecting data on uencyinstruction(primarilyusing
a celeration chart – the chart used by these practitioners to measure Fluency).
After a comprehensive literature search in many databases and through fugitive
literature searches, I found eight articles providing data which measure the
inuenceofFluency-basedinstructionforspecicskills on children with autism.
Examples of skills taught using Fluency include improving speech intelligibility,4
labelling pictures,5 teaching visual pattern imitation,6 reading comprehension,7
joint attention,8 prepositions,9andansweringinformationalWHquestions.10
Although this increased publication stream is a step forward for this emerging
eldasitappliestoautism, almost all the articles were published in the recently
established Journal of Precision Teaching and Celeration. In order to gain
acceptance as a well-settled methodology for autism, these practitioners need
to publish in well-established behavioral journals as well. It is particularly
problematic that these practitioners have abandoned the well-established
behavioral journals as the lion’s share of the articles published on autism and
Section One: What Works and What Doesn’t?
69
Fluency in the Journal of Precision Teaching and Celeration are written by the
founder of the journal.
What does the therapy actually look like?
The fundamentals of each skill are learned in a fast-paced way, with progress
recorded on a celerationchart(aformoftime-basedmeasurement).Thechild
istaughtbypracticingtheskillratherthanbeingtoldwhattodo(e.g.,theuse
ofashcardswouldbecommon).Theinformationwouldalsobeaskedusing
what Fluency practitioners refer to as six multiple learning channels which are
comprised of See-Write,Hear-Say,Free(recall)Write,See-Say,Free(recall)
Say, Hear-Do. These channels constitute different ways to introduce and teach
skills. Repetition through a varied number of learning channels is hypothesized
to improve the learning and retention process and, thereby, achieve Fluency
(onceagain,denedasaccuracyandrate).
Would I try it on my child?
Although I recognize that rate plus accuracy is important to truly master any
skill,thereisinsufcientdata demonstrating that a behavioral treatment program
utilizing Fluency instruction exclusively (not taking advantage of the many
different tools in the behavioral toolbox),willimprovemychild’sabilities.I
would have no problem, however, utilizing Fluency as a technique to teach
a particular skill that has been well-established tobenet fromrole learning
(suchasmemorizingmultiplicationtablesoravocabularylist);however,ifmy
child were young, I would be very wary of replacing discrete trial training with
Fluency-based instruction, as the former is a well-established techniqueused
with autistic children, whereas the latter techniqueisstillemergentasappliedto
children with autism. That said, I think there are some skills that lend themselves
better to this teaching method than do others.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
70
What kind of study would I like to see the researchers
working on Fluency do?
I would like to see the progress of children who have undergone Fluency-
based instruction measured using nonuency-based,standardized instruments.
Specically,IQ and language prociencymeasures both pre and post treatment
are necessary for these studies to track improvement. Because these practitioners
use single-subject case designs exclusively, standardized measures are crucial
to determine whether the children’s gains are genuine. This is also the reason it
is imperative for Fluency practitioners to publish their results in peer-reviewed
journals of which they are not on the editorial boards. I am very optimistic
regarding the potential of Fluency-based instruction to teach children with autism
who have obtained a basic level of learning competence. However, prior to using
a novel approach which may or may not produce the same positive outcomes,
Fluency needs to be scrutinized more closely by those practitioners in the area of
applied behavior analysis. In addition, I would like to see Fluency researchers
create a between-subject design using their curriculum and comparing it to
children in a best-practices, intensive, behavioral treatment program.
Who else recommends for or against Fluency as
a method for the treatment of autism?
This method has not yet gained much popularity as a comprehensive treatment
for autism, although Fluency-based instruction is used in some programs as one
techniqueintheABA toolbox. Therefore, there is very little debate about Fluency;
however, I expect that this may change as more parents choose to use Fluency-
based instruction exclusively for their child’s autism treatment program.
Section One: What Works and What Doesn’t?
71
So you’re still on the horns of a dilemma?
If you would like to try Fluency-based instruction, I would recommend that
you use a behavioral consultant who incorporates Fluency as one techniquein
a comprehensive treatment program, rather than use consultants who attempt
to target everything through Fluency-based instruction. In addition, I would
have my child tested once a year, using a variety of psychometric and language
assessment tests conducted by a psychologist with no emotional or nancial
investment in Fluency-based instruction.
What’s the bottom line?
Based on the scienticresearchtodate,thereisinsufcientevidence to determine
that an Intensive Behavioral Treatment program relying solely on the use of
Fluency-based instruction will ameliorate the condition of autism, although there
is limited evidence that points to the appropriate use of Fluency-based instruction
for certain deciencescharacteristicofautism.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
72
Endnotes for Intensive Behavioral Treatment
Introduction
1Lieberman, D.A. 2nd Edition. 1993. Learning, Behavior and Cognition. Belmont, CA:
Wadsworth Publishing.
2BehaviorAnalystCerticationBoard.<http://www.bacb.com/pages/aboutBAs.html>(accessed
Nov.8,2005).
3Matson, J. L., D.A. Benavidez, L.S. Compton, T. Paulawskyyj, and C. Baglio. 1996. “Behavioral
Treatment of Autistic Persons: A Review of Researchfrom1980tothePresent.”Research in
Developmental Disabilities. No. 17, No. 6, p. 433-465.
4Freeman, S.K. 2003. Science for Sale in the Autism Wars: Medically necessary autism treatment,
the court battle for health insurance and why health technology academics are enemy number
one. Langley, BC: SKF Books, Inc.
Home-based Treatment
1Metz, B., J.A. Mulick, and E.M. Butter. 2005. “Autism:Alate20thcenturyfadmagnet.”In
J.W. Jacobson, R.M. Foxx, and J.A. Mulick, eds., Controversial Therapies for Developmental
Disabilities: Fad, Fashion, and Science in Professional Practice, NJ: Lawrence Erlbaum
Associates, p. 237.
2LovaasO.I.1987.“Behavioral Treatment and Normal Educational and Intellectual Function-
ing in Young AutisticChildren.”Journal of Consulting and Clinical Psychology, Vol. 55,
No. 1, pp. 3-9.
3Anderson, S.R., D.L. Avery, E.K. DiPietro, G.L. Edwards, and W.P. Christian. 1987. “Intensive
Home-based Early Intervention With AutisticChildren.”Education and Treatment of Children,
Vol., 10, Vol. 4, pp. 352-366.
4Birnbrauer, J.S., and D.J. Leach. 1993. “The Murdoch Early Intervention Program After 2
Years.”Behavior Change, Vol. 10, No. 2, pp. 63-74.
5McEachin, J.J., T. Smith, and O.I. Lovaas. 1993. “Long-Term Outcome for Children With
Autism Who Received Early Intensive Behavioral Treatment.”American Journal on Mental
Retardation, Vol., 97, No. 4, pp. 359-372.
6Smith, T., S. Eikeseth,M.Klevstrand,andO.I.Lovaas. 1997. “Intensive Behavioral Treatment
for Preschoolers With Severe Mental Retardation and Pervasive Developmental Disorder.”
American Journal on Mental Retardation, Vol. 102, No. 3, pp. 238-249.
7Eikeseth, S., T. Smith, E. Jahr, and S. Eldevik. 2002. “Intensive Behavioral Treatment at School
for4to7Year-OldChildrenWithAutism:AOne-YearComparisonControlled Study.”Behavior
Modication, Vol. 26, pp. 49-68.
8Howard, J.S., C.R. Sparkman, H.G. Cohen, G. Green, and H. Stanislaw. 2005. “A Comparison
Section One: What Works and What Doesn’t?
73
of Intensive Behavior Analytic and Eclectic Treatments for Young Children With Autism.”
Research in Developmental Disabilities, Vol. 26, pp. 359-383.
9Sallows,G.O.,andT.D.Graupner. 2005. “Intensive Behavioral Treatment for Children With
Autism: Four-Year OutcomeandPredictors.”American Journal on Mental Retardation, 2005,
Vol. 110, No. 6, pp. 417-438.
10Cohen, H., M. Amerine-Dickens, and T. Smith. 2006. “Early Intensive Behavioral Treatment:
Replication of the UCLAModel in a Community Setting.” Journal of Developmental and
Behavioral Pediatrics, Vol. 27, No. 2S, pp. S145-55.
11Sheinkoph, S.J., and B, Siegel. 1998. “Home-based Behavioral Treatment of Young Children
With Autism.”Journal of Autism and Developmental Disorders, Vol. 28, No. 1, pp. 15-23.
12Smith, T. 1993. “Autism.”InT.R.Gilesed.,Handbook of effective psychotherapy, NY: Plenum,
pp. 107-133.
13Smith, T., A. Groen, and J. Wynn. 2000. “Randomized Trial of Intensive Early Intervention
for Children with Pervasive Developmental Disorder.”American Journal on Mental Retardation,
Vol. 105, pp. 269-285.
14Butter, E.M., J. Mulick, and B. Metz. 2006. “Eight Case Reports of Learning Recovery in
Childr en with Perva sive Develop mental Disor dersA fter Early In tervention. ” Behavioral
Interventions, Vol. 21, No. 4, pp. 227-243.
14Bibby, P., S. Eikeseth,N.T. Martin, O.C. Mudford, and D. Reeves. 2002. “Progress and
Outcomes for Children WithAutism Receiving Parent-Managed Intensive Interventions.”
Research in Developmental Disabilities, Vol. 23, pp. 81-104.
15Lovaas,O.I.,(seen.2above),p.3.
16Baer, D.M. 1993. “Commentaries on McEachin, Smith, and Lovaas: Quasi-Random Assignment
Can Be As Convincing As RandomAssignment.”American Journal of Mental Retardation,
Vol. 97, No. 4, p. 374.
17Sallows,G.O.,T.D.Graupner,(seen.9above),p.433.
18Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany,NY:New York State Department of Health, p. IV-15.
19Satcher, D. 1999. Mental health: A report of the surgeon general. U.S. Public Health Service.
Bethesda, MD www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html#autism
(accessedJan.11,2006).
20American Academy of Pediatrics. 2000. “Policy Statement: The Pediatrician’s Role in the
Diagnosis and Management of Autistic Spectrum DisorderinChildren.”Pediatrics, Vol. 107,
pp. 1221-1226. www.aap.org/policy/re060018.html(accessedJune18,2000).
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
74
21National Research Council. 2001. Educating children with autism, Committee on Educational
Interventions for Children With Autism, Division of Behavioral and Social Sciences and
Education, Washington, DC: National Academy Press. http://books.nap.edu/books/0309072697/
html/index.html(accessedMay5,2006).
22Volkmar, F., E.H. Cook, J. Pomeroy, G. Realmuto, and P. Tanguay. 1999. “Practice Parameters
for the Assessment and Treatment of Children, Adolescents, and Adults With AutismandOther
Pervasive Developmental Disorders.”Journal of the American Academy of Child and Adolescent
Psychiatry, Vol.38(sup),pp.32S-54S.
23Lovaas, O.I. 2003. Teaching individuals with developmental delays: basic intervention
techniques. Austin, TX: Pro-Ed, Inc., pp. 323-325.
24Maurice, C., G. Green, and S.C. Luce. 1996. Behavioral intervention for young children with
autism. Austin, TX: Pro-Ed, Inc.
25Leaf, R., and J. McEachin. 1999. A work in progress: Behavior management strategies and a
curriculum for Intensive Behavioral Treatment of autism. New York, NY: DRL Books, L.L.C.
26Cambridge Center for Behavioral Studies. http://store.ccbsstore.com/default.asp (accessed
May5,2006).
Centre-based Treatment
1McClannahan, L.E., MacDuff G.S., and Krantz, P.J. 2002. “Behavior Analysis and Intervention
for Adults with Autism.”Behavior Modication, Vol. 26, No. 1, pp. 9-27.
2Harris, S.L., and J.S. Handleman. 2000. “Age and IQ at Intake as Predictors of Placement for
Young Children With Autism:AFour-to-Six-YearFollow-Up.”Journal of Autism Develop-
mental Disorders, Vol. 30, No. 2, p. 139.
3Strain, P.S., and L.K. Cordisco. 1994. “Chapter 5: The Creative Curriculum for Early Child-
hood.”InS,L.Harris and J.S. Handleman, eds. Preschool Education Programs for Children
With Autism. Austin, TX: Pro-Ed, Inc.
4Fenske, E.C., S. Zalenski, P.J. Krantz, and L.E. McClannahan. 1985. “Age at Intervention and
Treatment OutcomeforAutistic children in a Comprehensive Intervention Program.”Analysis
and Intervention in Developmental Disabilities, 1985, Vol. 5, pp. 49-58.
5Handleman, J.S., S.L. Harris, D. Celiberti, E. Lilleleht, and L. Tomchek. 1991. “Developmental
Changes of Preschool Children with Autism and Normally Developing Peers.” The
Transdisciplinary Journal, Vol. 1, No. 2, pp. 137-143.
6Harris, S.L., J.S. Handleman, B. Kristoff, L. Bass, and R. Gordon. 1990. “Changes in Language
Development Among Autistic and Peer Children in Segregated and Integrated Preschool Settings.”
Journal of Autism and Developmental Disorders, Vol. 20, No. 1, pp. 23-31.
7Harris,S.L.,andJ.S.Handleman.(seen.2above).
Section One: What Works and What Doesn’t?
75
8Hoyson, M., B. Jamieson, and P.S. Strain. 1984. “Individualized Group Instruction of Normally
Developing and Autistic-Like Children: The LEAP Curriculum Model.”Journal of the Division
for Early Childhood, Vol. 8, No. 2, pp. 157-172.
9Harris, S.L., J.S. Handleman,B.Kristoff,L.Bass,andR.Gordon,(seen.6above),p.25.
10Harris, S.L., J.S. Handleman,B.Kristoff,L.Bass,andR.Gordon,(seen.6above),p.24.
11Harris, S.L., and J.S. Handleman. 1994. “Chapter 5: The Douglass Developmental Disabilities
Center.” In S.L. Harris and J.S. Handleman, eds. Preschool Education Programs for Children
With Autism. Austin, TX. Pro-Ed, Inc., p. 74.
12Hoyson, M., B. Jamieson, and P.S. Strain,(seen.8above),p.159.
13Hoyson, M., B. Jamieson, and P.S. Strain,(seen.8above),p.165.
14Harris, S.L., and J.S. Handleman,(seen.11above),p.77.
15Hoyson, M., B. Jamieson, and P.S. Strain,(seenote8above),p.158.
16The ScienticReviewofMentalHealthPractice,www.srmhp.org/0101/autism.html(accessed
Jan.11,2006).
17Association for Science in Autism treatment, www.asatonline.org/about_autism/autism_info04.
html(accessedFeb.21,2006).
18BehavioralAnalystCerticationBoard,www.bacb.com/consum_frame.html(accessedFeb.
21,2006).
Offshoots:
a) Pivotal Response Training
1Koegel, R.L., L. Schreibman, A. Good, L. Cerniglia, C. Murphy, and L.K. Koegel. 1989. How
To Teach Pivotal Behaviors to Children With Autism: A Training Manual. Santa Barbara CA:
University of California.
2Koegel,R.L.,etal.,(seen.1above).
3Bruinsma, Y., R.L. Koegel, and L.K. Koegel. 2004. “Joint Attention and Children With Autism:
A review of the Literature.”Mental Retardation and Developmental Disabilities, Vol.10, pp.
169-175.
4Koegel, R.L., S. Camarata, L.K. Koegel, A. Ben-Tall, and A.E. Smith. 1998. “Increasing Speech
Intelligibility in Children with Autism.”Journal of Autism and Developmental Disorders, Vol.
28, No. 3, pp. 241-251.
5Koegel,etal.,(seen.4above),p.246.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
76
6Laski, K.E., M.H. Charlop, and L. Schreibman. 1988. “Training Parents to Use the Natural
Language Pardigm to Increase Their Autistic Children’s Speech.”Journal of Applied Behavior
Analysis, Vol. 21, No. 4, pp. 391-400.
7Koegel, R.L., L.K. Koegel, and A. Surratt. 1992. “Language Intervention and Disruptive
Behavior in Preschool Children with Autism.”Journal of Autism and Developmental Disorders,
Vol. 22, No. 2, pp. 141-153.
8Pierce, K., and L. Schreibman. 1995. “Increasing Complex Social Behaviors in Children with
Autism: Effects of Peer-Implemented Pivotal ResponseTraining.”Journal of Applied Behavior
Analysis, Vol. 28, No. 3, pp. 285-295.
9Thorp, D.M., A.C. Stahmer, and L. Schreibman. 1995. “Effects of Sociodramatic Play Training
on Children with Autism.” Journal of Autism and Developmental Disorders, Vol. 25, No. 3,
p. 265.
10Stahmer, A.C. 1995. “Teaching Symbolic Play Skills to Children with Autism Using Pivotal
ResponseTraining.”Journal of Autism and Developmental Disorders, Vol. 25, No. 2, pp. 123-
141.
11Pierce, K., and L. Schreibman. 1997. “Using Peer Trainers to Promote Social Behavior in
Autism: Are They EffectiveatEnhancingMultipleSocialModalities?” Focus on Autism and
Other Developmental Disabilities, Vol. 12, No. 4, pp. 207-218.
12Pierce, K., and L. Schreibman. 1997. “Multiple Peer Use of Pivotal Response Training to
Increase Social Behaviors of Classmates with Autism: Results from Trained and Untrained
Peers.”Journal of Applied Behavior Analysis, Vol. 30, No. 1, pp. 157-160.
13Koegel, L.K., S.M. Camarata, M. Valdez-Menchaca, and R.L. Koegel. 1998. “Setting
Generalization of Question-Asking by Children With Autism.”American Journal on Mental
Retardation, Vol. 102, No. 4, pp. 346-357.
14Koegel, R.L., Y. Shoshan, and E. McNerney. 1999. “Pivotal Response Intervention II:
Preliminary Long-Term OutcomeData.”Journal of The Association for Persons with Severe
Handicaps, Vol. 24, No. 3, pp. 186-198.
15Koegel, L.K., C.M. Carter, and R.L. Koegel. 2003. “ Teaching Children With Autism Self-
Initiations as a Pivotal Response.” Topics in Language Disorders, Vol. 23, No. 2, pp. 134-
145.
16Koegel, R.L., G.A. Wener, L.A. Vismara, and L.K. Koegel. 2005. “The Effectiveness of
Contextually Supported Play Date Interactions Between Children With Autism and Typically
Developing Peers.”Research and Practice for Persons with Severe Disabilities, Vol. 30, No.
2, pp. 93-102.
17Laski,K.E.,M.H.Charlop,andL.Schreibman,(seen.6above),p.394.
18Koegel,R.L.,etal.,(seen.4above),p.246.
19Koegel, R.L., L.K. Koegel,andA.Surratt,(seen.7above),p.150.
Section One: What Works and What Doesn’t?
77
20Delprato, D.J. 2001. “Comparisons of Discrete-Trial and Normalized Behavioral Language
Intervention for Young Children with Autism.”Journal of Autism and Developmental Disorders,
Vol. 31, No. 3, pp. 315-325.
21Koegel, R.L., L.K. Koegel,andA.Surratt,(seen.7above),p.149.
22Koegel,R.L.,etal.,(seen.4above),p.246.
23Stahmer,A.C.,(seen.10above),p.137.
24Stahmer,A.C.,(seen.10above),p.139.
25Koegel,L.K.,etal.,(seen.13above),p.351.
26Pierce,K.,andSchreibman,(seen.11above),p.208.
27Koegel,R.L.,etal.,(seen.1above),p.9.
28Koegel,R.L.,etal.,(seen.1above),p.9.
29Pierce,K.,andL.Schreibman,(seen.8above),p.288.
30Pierce,K.,andL.Schreibman,(seen.8above),p.287.
31Schreibman, L., W.M. Kaneko, and R.L. Koegel. 1991. “Positive Affect of Parents of Autistic
Children: A Comparison Across Two Teaching Techniques.”Association for Advancement of
Behavior Therapy, Vol. 22, No. 4, p. 488.
32Koegel, R.L., A. Bimbela, and L. Schreibman. 1996. “Collateral Effects of Parent Training
on Family Interactions.”Journal of Autism and Developmental Disorders, Vol. 26, No. 3, pp.
347-359.
33Laski,K.E.,M.H.Charlop,andL.Schreibman,(seen.6above),pp.398-399.
34Lisa Benaron. 2006. Pivotal Response Intervention Model. Pediatric Development and Behavior,
www.dbpeds.org(accessedMay,5,2006).
b) Positive Behavioral Support
1Carr, E.G., et al. 2002. “Positive behavior support: Evolution of an appliedscience.”Journal
of Positive Behavior Interventions, Vol. 4, pp. 4-16, 20.
2Carr,E.G.,etal.,(seen.1above),p7.
3Wehamn,T.,andL.Gilkerson.1999.“ParentsofYoungChildrenWithSpecialNeedsSpeakOut:
Perceptions of Early InterventionServices.”Infant-Toddler Intervention: The Transdisciplinary
Journal, Vol. 9, No. 2, pp. 137-167.
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4Buschbacher, P.W., and L. Fox. 2003. “Understanding and Intervening With the Challenging
Behavior of Young Children With Autism spectrum disorder.”Language, Speech and Hearing
Services in Schools, Vol. 34, No. 3, pp. 217-227.
5McCurdy, B.L., M.C. Mannella, and N. Eldridge. 2003. “Positive Behavior Support in Urban
Schools: Can We Prevent the Escalation of Antisocial Behavior?”Journal of Positive Behavior
Interventions, Vol. 5, No. 3, pp. 158-170.
6Lucyshyn, J.M., G. Dunlap, and R.W. Albin. 2002. Families and Positive Behavior Support:
Addressing problem behavior in family contexts. Baltimore, MD: Paul H. Brookes Publishing,
p. 465.
7Boettcher, M., R.L. Koegel, E.K. McNerney, and L.K. Koegel. 2003. “A Family-Centered
Prevention Approach to PBSinaTimeofCrisis.”Journal of Positive Behavior Interventions,
Vol. 5, No. 1, pp. 55-59.
8Marshall, J.K., and P. Mirenda. 2002. “Parent-Professional Collaboration for Positive Behavior
SupportintheHome.”Focus on Autism and Other Developmental Disabilities, Vol. 17, No.
4, pp. 216-228.
9Fucilla, R. 2005. “Post-crisis Intervention for Individuals with Autism spectrum disorder.”
Reclaiming Children and Youth, Vol. 14, No. 1, pp. 44-51.
10Sallows,G.O.,andT.D.Graupner. 2005. “Intensive Behavioral Treatment For children With
Autism: Four-Year OutcomeandPredictor.”American Journal on Mental Retardation, Vol.
110, No. 6, pp. 417-438.
11Zane, T. 2005. Fads in special education: An overview. In J.W. Jacobson, R.M. Foxx, J.A.
Mulick eds. Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science
in Professional Practice, NJ: Lawrence Erlbaum Associates, p. 175.
12BehaviorAnalystCerticationBoard,www.bacb.com/becom_frame.html(accessedJune,13,
2006).
13Durand, V. M., and N. Rost.2005.“DoesItMatterWhoParticipatesInOurStudies?”Journal
of Positive Behavior Interventions, Vol. 7, No. 3, pp. 186-188.
14Mulick, J.A., and E.M. Butter. 2005. Positive Behavior Support: A paternalistic utopian
delusion. In J.W. Jacobson, R.M. Foxx, J.A. Mulick eds. Controversial Therapies for
Developmental Disabilities: Fad, Fashion, and Science in Professional Practice, NJ: Lawrence
Erlbaum Associates, p. 385.
c) Verbal Behavior
1Skinner, B.I. 1957. Verbal Behavior. NY: Appleton-Century-Crofts.
2Sundberg, M.L., and J.W. Partington. 1998. Teaching Language to Children with Autism or
Other Developmental Disorders. Danville, CA: Behavior Analysts, Inc., p. 298.
Section One: What Works and What Doesn’t?
79
3Braam, S.J., and A.Poling. 1983. “Development of IntraVerbal Behavior in Mentally Retarded
Individuals Through Transfer of Stimulus Control Procedures: Classification of Verbal
Responses.” Applied Research in Mental Retardation, Vol. 4, pp. 279-302.
4Drash, P.W., L. R. High, and R.M. Tudor. 1999. “Using Mand Training to Establish an Echoic
Repertoire in Young Children with Autism.”The Analysis of Verbal Behavior, Vol. 16, pp. 29-
44.
5Sundberg, M.L., M. Loeb, L. Hale, and P. Eigenheer. 2002. “Contriving EstablishingOperations
to Teach MandsforInformation.”The Analysis of Verbal Behavior, Vol. 18, pp. 15-29.
6Miguel, C. F., J.E. Carr, and J. Michael. 2002. “The Effects of a Stimulus-Stimulus Pairing
Procedure on the Vocal Behavior of Children Diagnosed with Autism.”The Analysis of Verbal
Behavior, Vol. 18, pp. 3-13.
7Behavior Analysts, Inc., www.behavioranalysts.com(accessedDec.28,2006).
8TheMariposaSchool,http://www.MariposaSchool.org(accessedDec.28,2006).
9Drash, P.W., and R.M. Tudor. 2000. “Is Autism a Preventable Disorder of Verbal Behavior? A
ResponsetoFiveCommentaries.”The Analysis of Verbal Behavior, Vol. 20, pp. 55-62.
10Drash, P.W., and R.M. Tudor. 2004. “An Analysis of Autism as a Contingency-Shaped Disorder
of Verbal Behavior.”The Analysis of Verbal Behavior, Vol. 20, pp. 5-23.
11Drash, P.W., and R.M. Tudor,(seen.10above),p.5.
12Oah,S.,andA.M.Dickinson.1989.“AReviewofEmpiricalStudies of Verbal Behavior.”The
Analysis of Verbal Behavior, Vol. 7, pp. 53-68.
13Carr, J.E., and A.M. Firth. 2005. “The Verbal Behavior Approach to Early and Intensive
Behavioral Intervention for Autism: A Call for Additional EmpiricalSupport.”Journal of Early
and Intensive Behavioral Intervention, Vol. 2, No. 1, pp. 18-27.
d) Fluency
1Binder, C. 1988. “Precision Teaching: Measuring and Attaining Exemplary Academic
Achievement.”Youth Policy, Vol. 10, No. 7, pp. 12-15.
2The Fluency Project, http://www.Fluency.org(accessedFeb.13,2007).
3Binder, C. 1993. “Behavioral Fluency: ANew Paradigm.” Educational Technology, pp.
8-14.
4Fabrizio, M.A., S. Pahl, and A. Moors. 2002. “ Improving Speech Intelligibility Through
PrecisionTeaching.”Journal of Precision Teaching and Celeration, Vol. 18, No. 1, pp. 25-27.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
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5Moors, A., and M.A. Fabrizio. 2002. “Using Tool Skill Rates to Predict Composite Skill
FrequencyAims.” Journal of Precision Teaching and Celeration, Vol. 18, No. 1, pp. 28-29.
6Fabrizio, M.A., and K. Schirmer. 2002. “Teaching Visual Pattern Imitation to a Child With
Autism.”Journal of Precision Teaching and Celeration, Vol. 18, No. 1, pp. 80-82.
7Fabrizio, M.A., K. Schirmer, and K. Ferris. 2002. “Tracking Curricular ProgressWithPrecision.”
Journal of Precision Teaching and Celeration, Vol. 18, No. 2, pp. 78-79.
8Fabrizio, M.A., K. Schirmer, E. Vu, A. Diakite, and M. Yao. 2003. “Analog Analysis of Two
Variables Related to the Joint Attention of a Toddler With Autism.”Journal of Precision Teaching
and Celeration, Vol. 19, No. 1, pp. 41-44.
9King, A., A.L. Moors, and M.A. Fabrizio. 2003. “Concurrently Teaching Multiple Verbal
OperantsRelatedtoPrepositionUsetoaChildWithAutism.”Journal of Precision Teaching
and Celeration, Vol. 19, No. 1, pp. 38-40.
10Zambolin, K., M.A. Fabrizio, and S. Isley. 2004. “Teaching a Child With Autism to Answer
Informational Questions Using Precision Teaching.” Journal of Precision Teaching and
Celeration, Vol. 20, No. 1, pp. 22-25.
Section One: What Works and What Doesn’t?
81
p TEACCH
p The Playschool (Colorado Health Sciences Center)
p Giant Steps
p Higashi/Daily Life Therapy
p The Walden Preschool
Other School-based Therapies Section 1.2
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Section One: What Works and What Doesn’t?
83
Other School-based Therapies: TEACCH
What is TEACCH?
TEACCH(Treatment and Education of Autistic and Related Communication
HandicappedChildren)isastaterunagencyfor individuals with autism and
their families, and provides both a center-based and a community outreach
program. Families can choose from a variety of treatment options to best meet
their individual circumstances and needs. TEACCH views three levels of need
which must be addressed: those of the child; those of the family, and those
of the community.1 The goal is to help foster independence and happiness
for every child in the programs. In order to accomplish this, the TEACCH
philosophy supports the individualization of programs not only for the child,
but also for the family and community. In the center-based program, student to
teacher ratios are not limited at the preschool age level; however, at the school-
age level, ratios are limited to six children per one teacher. The curriculum
emphasizes structured teaching and involves educational continuity across
settings. To accomplish this, TEACCH proponents claim that the layout of the
classroom and the way the environment is engineered help promote the child’s
independence. Classroom goals for each child include cognitive, nemotor,eye/
hand integration, organizational skills, self-help skills, receptive and expressive
language, and social interaction.
These programs are taught using structuredteaching(i.e.,clear,predictable,and
rule-based),visual schedules(i.e.,usingpicturesorliststoorganizethechild’s
day),environmentalaccommodation(i.e.,organizingtheclassroomtominimize
distraction)andacombinationofothercognitive and behavioral approaches. To
address problematic behaviors, the TEACCH model designs the environment
and uses daily schedules to prevent problematic behaviors before they occur.
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They also use functional analysis (analyzing a behavior with respect to its
function)and,wherenecessary,the occasionaltime-out(removingthechild
fromthesituation).
The Home-Based component of TEACCH services uses programs which
emphasize visual strengths, pre-academic or pre-vocational skills, structured
teaching, a schedule and a communication system. In the outcome study by
OzonoffandCathcart(1998),theindividualized curriculum was programmed to the
child, based on the baseline scores(fromameasurecalledthePsychoeducational
Prole–Revised[PEP-R]),whichindicatedthechild’sstrengths and weaknesses.
The home program lasted ten weeks, wherein parents and two therapists met for
an hour per week to work with the child. While one therapist worked, parents
and the other therapist observed and discussed techniquesused.Basedontheir
observations, parents were instructed to work with their child for a half hour per
day using the techniquestaughtbyTEACCH staff.
What evidence do the practitioners have that this
really works?
There is little outcome data available to evaluate the efcacyofthecenter-based
TEACCHprogram.Aftercombingthroughoverftypublications written on the
TEACCH method,Icouldonlyndthreepeer-reviewed articles which provide
outcome data on children who participated in a TEACCH program.2,3,4 The
Lord and Schopler study(1989)reports results for children who participated in
the TEACCH program and found that despite the program, the children did not
improvesignicantlybaseduponIQ scores. In their original study, Lord and
Schopler took seventy-one autistic children and compared them with seventy-
one non-autistic, communicatively-handicapped children who also attended a
TEACCH program. Their ndingsregarding children with autism were that
Section One: What Works and What Doesn’t?
85
the IQ scores were stable despite treatment. They state: “...IQs at age 4 years
were found to be highly correlated with performance IQ at age 10 years for
both groups. Absolute difference scoresandgroupmeanswerealsoequivalent
for both samples, with no difference in patterns of change or the relationship
between performance IQ and language status...”5 In other words, despite the
TEACCH curriculum, according to Lord and Schopler’s research, there was no
signicantgaininIQ scores for either group of children who participated in the
TEACCH curriculum.
The next outcome study6 presents data which addresses the TEACCH home-
based program. The home-based study, conducted by Ozonoffand Cathcart
(1998) divided the children in two groups. One group of eleven children
received a home-based TEACCH program where parents were taught to work
with their children. The other group of eleven children were not provided with
any competing treatment. After four months of treatment, the children in the
experimental group tested signicantlybetter on nemotor andgross motor
skills as well as nonverbal conceptual skills. Their overall skills, based on the
PsychoeducationalProle–Revised(PEP-R),alsoimprovedoverthecontrol
group.
ItisimportanttoappropriatelyevaluatetheresultsoftheOzonoffandCathcart
(1998)study.Of noteis that allthe childrenin the study were in local day
treatment programs in Utah, which, as the authors point out, is a state that relies
heavily upon discrete trial training in their special educational programs. In
addition, the home-based program relied on TEACCH methods, which included
structured teaching administered by parents who were taught by the researchers.
The results of their study actually tell us that for children with discrete trial
traininglearninghistories(i.e.,intensivebehavioraltreatment),moreintervention
is better than less intervention; however, their study does not tell us that the
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TEACCH intervention is responsible for the gains. The question remains
whether the TEACCH home-based program, delivered byusingparents(and
theirfreelabor)is as effective as the same number of hours in a home-based
ABA program utilizing structured methods, such as discrete trial training, using
IBT professionals.
Despitethecritiqueabove,thisstudy does show much more in the way of positive
results than the original TEACCH study; however, due to the weaknesses of the
study, these resultsneedtobetakenwithcaution.Oneofthestudy’s weaknesses is
thattheonlymeasureusedtodenelevel of autism(thedependentvariable)both
at the pre-test and post-test is the PsychoeducationalProle–Revised(PEP-R).
While the CARS was used pretreatment to determine autism, no mention of
the CARS posttreatment results were made. The CARS scores were negatively
correlated with change scores, which means that those children who had better
CAR scores(indicatingmilderautism),faredbetterwiththehome-program than
those children who were more severely affected. No individual CARS scores were
made available at pre or post treatment, and only the average CARS scores for
the group were available at pretreatment. Therefore, even if we accept the CARS
scores as being a valid measure of autism, we have no information whether the
child improved based on the treatment as measured by the CARS score.
In terms of the measure of the dependentvariable(whichisautism),thePEP-R
isnotsufcientwhenusedonitsown,becausewedonothavetheamountof
validity information that we have for other, more widely-used measures. It is
essential that if the PEP-R is used, it should be in addition to other, more accepted
measures which have proven validity.* The areas assessed by the PEP-R are
imitation, perception, nemotor,grossmotor,eye-handintegration, cognitive
*It is also problematic that both the CARS and the PEP-R are measures designed by one of the authors of
the study.
Section One: What Works and What Doesn’t?
87
performance and cognitive verbal skills. I am not convinced that the variables
of perception, nemotor,grossmotorandeye-handintegration are important
measures to gauge the degree of autism. The PEP-R does not measure behavior,
which is a vital aspect of functioning that must not be ignored. In addition to the
PEP-R measure, these authors should have measured cognitive level by using
tried and tested psychometric measurements to compare IQ scores pre and post
experiment.
An additional issue is that the dependent variables (to measureautism)were
measured by, “different testers, none of whom were blind to groupassignment.”7
In fact, the PEP-R was administered to the experimental group by their graduate
student therapist, while the control group was administered the PEP-R by the
authors. This introduces the possibility of experimenter bias in measuring the
dependentvariableandunderminesourcondenceintheresultsreported.
The nal study which reports positive effects of the TEACCH program is
Paneraietal.,(2002).ThisItalianstudy compared a group of eight children
who participated in a residential TEACCH program set up at a hospital with a
group of eight children who were integrated into the regular school system with
a special education assistant where the staff did not use any techniquesspecicto
teaching children with autism. The children in the TEACCH program improved
in many different areas relative to the controlgroup(andtheseimprovements
were statisticallysignicant).Thisndingisnotsurprisingbecausethecontrol
group was not given any autism-specic treatment. What is an unfortunate
nding,though,isthatafteroneyearoftreatment based on the Vineland Adaptive
BehavioralScales,therewasnosignicantdifferencebetweentheexperimental
and control groups when it came to receptive and expressive communication.
Inotherwords,akeydecitinchildrenwithautism—theabilitytospeakand
comprehend the spoken word — was not improved with this therapy, even though
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88
the TEACCH program is designed specically for children with autism. In
addition, Table Eight of the Italian TEACCH study demonstrates that generically
trained support teachers do no better than babysit children with autism when
attempting to integrate them into an educational system.8 Although this study
is certainly valuable due to the comparison of TEACCH with an educational
program with no autism-specific expertise, it does not shed light on the
comparison between other effective treatments, such as those from the behavioral
eld,whichisthemaincompetitortreatmenttoTEACCH.
What does the therapy actually look like?
Since TEACCH services are center-based , community based, and home-based,
itisdifculttodescribetheservicesasawhole.TheTEACCH classroom looks
different than a typical classroom, with very few so-called “distractions” on
the walls and on the boards. Children typically sit in a classroom cubicle so as
not to be distracted by other activity in the classroom. Each child has a list of
tasks that must be completed independently. Independent task completion is a
high priority because the TEACCH philosophy is based on the foundation that
the child will be placed in a vocation in which he will have to complete jobs
independently. TEACCH emphasizes parental involvement and the training of
parents as cotherapists. TEACCH outreach programs have not been described
insufcientdetail to illustratehowthehomeandcommunityprograms look;
however, they do speak of a number of treatment options which occur across
many different settings, i.e., home, community, and workplace.
What else do I think?
Given the philosophy of TEACCH, which involves the accommodation of
strengths and weaknesses, rather than targeting weaknesses for intevention and
elimination, children with autism who are involved in TEACCH programs may
Section One: What Works and What Doesn’t?
89
not be given opportunitites to overcome these decitsandfunction inamore
typical way. Frankly, I do not understand how the TEACCH paradigm promotes
integration of people with autism. It seems to me that this philosophy would
tend to result in the segregation of autistic children because how can people
with autism function in a mainstream setting without working on decitswith
the goal of either eliminating or reducing the problems associated with those
decits?Proponents of TEACCH do not profess to eradicate autism; rather, their
philosophyisthe“goalofimprovedadaptation”9 for children with autism. More
recently,IwasquitedismayedtocomeacrossanarticlebyJennettetal.(2003)
in which autismwasactuallyreferredtoasa“culture,”ratherthananeurological
disorder — a widely recognized health problem. They state: “This contrasts with
a primary value of the TEACCH approach of respecting the culture of autism
(MesibovandShea,inpress,emphasisadded).”10 It is most unfortunate when
researchersdeneautism in this manner because if we magically transform autism
into a culture, the argument absolves governments, insurance companies, and
others of all responsibility to provide treatment to this most vulnerable group of
children, for the fundamental reason that a culture is generally accepted, rather
than targeted, for treatment as a pathology.
The International Journal of Mental Health highlighted the TEACCH program
worldwide when one of the TEACCH proponents, Schopler, became a guest
editor at the journal. Despite the fact that no less than two issues of this journal
were devoted to TEACCH, not a single article reported compelling data on the
efcacyofthetreatment method.11 What is impressive about the TEACCH Model
is not so much its purported value in ameliorating autism, but rather its ability to
proliferateworldwide,whichisquiteamazinggiventhatthismodel is supported
by so little data showing treatment efcacy. The TEACCH Model has been
adopted by various systems in over twenty countries, including Belguim, Israel,
Italy, Japan, Kuwait, Spain, Sweden, the United Kingdom, and even France,
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90
where many psychiatrists still approach autism in a misguided, outdated Freudian
manner where the mother is blamed for causing the autism. I would like to suggest
that the reason behind the TEACCH proliferationistwofold:rst,theTEACCH
model is relatively easy and inexpensive for educational systems to adopt, and
second, the TEACCH proponents are expert at integrating into existing systems
(suchastheeducationalsystem)inordertopropagatethemethod.
It is also of some concern that the one measure for autism relied upon so heavily
in TEACCH studies is the PEP-R. Children could be taught how to perform well
on the dependentmeasure,whichmayinatetheactualprogress made as the
dependentmeasureissonarrow(particularlyintheareasofneandgross motor
skills).Inadditiontothis,behaviorisnotadequatelytested and the two critically
important dependent measures for individuals with autism, IQ and language, need
to be more comprehensively tested pre and post study of the TEACCH method,
and rely upon blind testers using widely accepted psychometric measures.
A problematic part of the one home-based TEACCH study3 is its length. The
programwastenweeksofsupervision(onehourperweek).Afterthisperiod,
parents(whoselaborisfree)becametheonessolelyinchargeofprogramming
and implementing the curriculum for a half hour per day. Although this may be
cost-effective for governments and educational systems, it is unlikely to be enough
time to create meaningful change for children with autism. The authors appear
to be well aware of the resource problem, wherein OzonoffandCathcart(1998)
state: “We hope these results will encourage teachers and other professionals to
devise cost-efcient means of extending programingintothehome”12 (emphasis
added). I’m not sure when cost-effectiveness became the responsibility of
researchers; however, it is a dangerous day when researchers trying to push a
eldforwardareworriedaboutgovernment expenditures.
Section One: What Works and What Doesn’t?
91
Finally, the TEACCH philosophy emphasizes the satisfaction and happiness of
the parents who participated in the TEACCH study. More emphasis appears to
be placed on parental satisfaction than on the effectiveness of autism treatment.
Although,asaparentIamgladthattheycareaboutmyhappiness,Irmlybelieve
that the progress of the child must remain the paramount concern of researchers
and that the elements of each child’s program must be motivated by that child’s
future and not a happiness rating for parents.
Would I try it on my child?
At this point there are two reasons I would not enroll my child in a TEACCH
program. First, the data is not sufcientaly strong to convince me that the
TEACCH way is the best way. Second, call me fussy, but I want my child to be
enrolled in a school or a treatment programthatisgoingtosqueezeoutevery
last ounce of herpotentialandnot“accomodate”herdecits.Iwantaprogram
to actively target her decitswiththegoaloferadicatingorminimizingthose
decits.Intermsofhappiness,Ibelievethatmychild’shappinessislinkedto
her independence: and her independence and integration into society is dependent
upon how capable an adult she will become. My happiness is directly linked to
her reaching her fullest potential.
What kind of study would I like to see the TEACCH
people do?
The authors of TEACCH’s outcome studies point out that there are problems with
the study(they refer to it as “confounding variables”)thatpreventacceptance
of their positive results as accurate.13 I would like to see them rectify this issue
by designing a study which includes the following elements, at minimum: an
experimental and controlgroupwithatleasttwentychildrenpercondition(per
group).The control group(the group notreceivingthe treatment)wouldbe
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92
children enrolled in regular specialeducationintheUnitedStates(wherethereis
strong federal legislation protecting children in the educational system).Results
of this study would at least determine whether a TEACCH classroom is superior
to a standard special education classroom. Next, it would be valuable to compare
the TEACCH method against a classroom which relies heavily upon discrete
trialtraining(astructureddata-supportedtechnique)andthevariousprinciples
of applied behavior analysis as teaching techniques. Inaddition,autism(the
dependentvariable)shouldbemeasuredusingmanytests which are relevant to
decitscommoninautism(suchaslanguage, behavior, and IQ).Toachievethis,
each child in the study should be given a full range of well-accepted tests which
measure these three areas. These tests should be administered by psychologists
who are in no way related to the study. If the results from a study with the
aboveelementsdemonstratethatchildrendoindeedbenetsignicantlywitha
TEACCH program, then this could be considered a treatment option for some
children. However, more research on the TEACCH modelisrequired before
any conclusions can be made about its effectiveness.
Who else recommends for or against TEACCH as
a method for the treatment of autism?
In 1999, the New York State Department of Health issued a well done and very
thorough report on clinical best practices for the treatment of autism in young
children. Data from the center-based TEACCH program was not reviewed
because of its lack of rigorous study design; however, the home-based study
wasreviewed(includedintheNewYorkReportintheparenttrainingsection).
They concur that in the OzonoffandCathcart(1998)study(wherechildrenwere
simultaneously receiving treatment in theday),thosechildren whose parents
weretrained(giveneighttotwelvesessionsofhome-basedtraining)improved
on the PEP-R outcome measure relative to the children whose parents did not
receive training.14
Section One: What Works and What Doesn’t?
93
So you’re still on the horns of a dilemma?
If you are still contemplating the merits of a TEACCH program, consider what
The Association for Science in Autism treatment has to say. This organization
provides a rather lukewarm reception to TEACCH when it states: “Research
conducted by TEACCH and anecdotal reports suggest TEACCH shows promise
15,16 but it is not objectively substantiated as effective by independent researchers”
(emphasisadded).17Thisisquitetrue.Independentresearchers should consider
further investigation using well established research protocols. Professionals
considering TEACCH methods should consider that the TEACCH program lacks
independentvericationofitseffectiveness, and should disclose this status to
keydecisionmakersinuencingthechild’sintervention.
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence to conclude
that the TEACCH model is effective for the treatment of children with autism.
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Endnotes for TEACCH
1Lord, C., and E. Schopler. 1989. “ The Role of Age at Assessment, Developmental Level and
Test in the Stability of Intelligence Scores in Young AutisticChildren.”Journal of Autism and
Developmental Disorders, Vol. 19, pp. 483-499.
2.Lord, C., and E. Schopler,(seen.1above).
3Ozonoff,S.,andK.Cathcart. 1998. “Effectiveness of a Home Program Intervention For Young
Children With Autism.”Journal of Autism and Developmental Disorders, Vol. 28, No. 1, pp.
25-32.
4Panerai,S.,L.Ferrante,andM.Zingale.2002.“BenetsoftheTreatment and Education of
Autistic and Communication Handicapped Children (TEACCH) Programme as Compared
Witha Non-specicApproach.” Journal of Intellectual Disability Research, Vol. 46, No. 4,
pp. 318-327.
5Lord, C. and E. Schopler. 1989. “Stability and assessment results of autistic and nonautistic
language-impaired children from preschoolyears to early school age.” Journal of Child
Psychology and Psychiatry, Vol. 30, No. 4, pp. 575-90.
6Ozonoff,S.,andK.Cathcart,(seen.3above).
7Ozonoff,S.,andK.Cathcart,(seen.3above).
8Panerai,S.,L.Ferrante,andM.Zingale,(seen.4above).
9Schopler, E., and G.B. Mesibov. 2000. “Cross-Cultural Priorities in Developing AutismServices.”
International Journal of Mental Health, Vol. 29, No. 1, pp. 3-21.
10Jennett, H.K., S.L. Harris, and G.B. Mesibov. 2003. “Commmitment to Philosophy, Teacher
Efcacy and BurnoutAmong Teachers of Children With Autism.” Journal of Autism and
Developmental Disorders, Vol. 33, No. 6, pp. 583-593.
11Schopler,E.,andG.B.Mesibov,(seen.9above).
12Ozonoff,S.,andK.Cathcart,(seen.3above).
13Ozonoff,S.,andK.Cathcart,(seen.3above),p.30.
14Guralnick, M. ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany(NY):New York State Department of Health, pp. IV51-52.
15Lord, C. and E. Schopler,(seen.5above).
16Lord, C. and E. Schopler, 1994. “TEACCH services for preschoolchildren.”InS.L.Harris
and J.S. Handleman, eds. Preschool education programs for children with autism. Austin, TX:
Pro-Ed. pp. 87-106.
17Association For Science in Autism treatment(ASAT),www.asatonline.org/about-autism-info14.
html(accessedNov.21,2005).
Section One: What Works and What Doesn’t?
95
Other School-based Therapies: The Playschool
What is The Playschool?
The Playschool is a preschool developed at the Colorado Health Sciences Center
which offers a developmentally based curriculum focussing on the symbolic
thought, communication and social/emotional development of the child with
autism. The major premise is that active learning in early childhood takes place
through play. The philosophical orientationswhichinuencedthedevelopment
of the Playschool curriculum is Mahler’s Theory of Development of Interpersonal
Relationships,* Piaget’s theory of Cognitive Development, and Pragmatics
Language Theory of Development.1 The instruction style at the Playschool is
child-led(anorientation which has the child set the agenda for what he would
liketodo).The curriculum includes language,affect(emotion),play and the
development of social relationships. This model focuses on communicative
intent, non-verbal communication, child as integrator and organizer of his
experience, child-led activities as a basis for communication, and the natural
environment as the setting for development of language.1 These are all essentially
“reactive language”strategies. The language part of the curriculum is based on
a model termed INREAL(INclass REActive Language)wherethespeechand
languagepathologist(SLP)joinsthechildintheclassroomasateacherrather
than pulling the child out into a resource room.2 In this setting, the SLP reacts
to(ratherthandirects)thechildtofacilitatelanguageacquisition.
*The importance of Mahler’s Theory of Development of Interpersonal Relationships to the
Playschool, is the attachment-separation-individuation process of interpersonal development.
This process is hypothesized to take place at the earliest age and is seen to be important in autism
by some because the theory describes both early separation experiences and the importance of
social connectedness in ego development.
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At the Playschool, an emphasis is placed on the development of positive
emotions and a happy relationship between the child and the adult. The adult
isrequired to initiateandmaintain social experiences by joining the child’s
activities, and thereby turn them into social experiences. In addition, learning is
encouragedthroughtheuseof“plannedphysicalspace”whichtakesintoaccount
structure, routine, sensorystimuliandotherengagingmaterials.Specically,
distractions are minimized so that the child can concentrate on the activity
at hand. Through play, the child is encouraged to learn actively by the adult
teaching developmentally appropriate skills.
The techniquesusedbythismethodtoaddressproblematic behaviors are either
ignoring or redirecting inappropriate behavior. In addition, attempts are made to
increase the individual’s repertoire of alternative, acceptable behaviors. Existing
behaviorsarenottargetedfordecrease.Occasionally,thechildmayberemoved
from the setting; however, it is not clear from the literature which situation
or behavior calls for removal. Behaviors that are considered maladaptive are
handled based on the developmental or emotional meaning of the behavior.3 It
is unclear exactly how injurious or destructive behaviors are handled other than
the application of time-out or redirection procedures.
What evidence do the practitioners have that this
really works?
Although the Playschool model has been described often in the literature on
early intervention,itwasextremelydifculttondany research data on this
method. After a comprehensive database search, I netted four articles.1,4,5,6*On
closer inspection, it appears as if the children involved in the earlier studies were
included in the 1991 study, which looks at outcome data for seventy-six children
*Rogers wrote many more articles on early intervention; however, in this section we included only those
articles which were highly relevant to the Playschool model.
Section One: What Works and What Doesn’t?
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from 1981 to 1991, forty-nine of whom had autism. Because these children’s
data have been summarized by the 1991 article through reviewing their charts
from 1981, I will discuss the studyaspresentedinthe 1991article(the1989
article reported on thirty-one of those forty-nine children with autism).
Rogers et al. report that children with autism made statisticallysignicantgains
on cognitive, language,neandgrossmotor,andsocialandemotionalmeasures
after six to nine months of participation in the Playschool program. This study
used a variety of tests including IQ, the Childhood AutismRatingScale(CARS),
the Early Intervention DevelopmentalProleandPreschoolProle(EIPPP)anda
variety of language and communication scales. A large number of rating measures
for one study is promising; unfortunately, the EIPPP was rated by the classroom
teacher, who is an inappropriate person to be carrying out the assessment,
given her interest in seeing improvement. Although the administrators of the
CARS and DevelopmentalProlescales were not familiar withtheexpected
outcome(hypothesis)ofthe study, we do not have that assurance in terms of
those administering the IQ and Language tests. In addition, the testing was not
sufcientlystandardized, with many children completing a variety of IQ and
language tests. The authors address the IQ standardization issue by creating
a standardized score which takes the child’s mental age and divides it by the
chronological age. However, the lack of standardization is still not ideal as these
circumstances open the door to possible inuences(alsocalled experimental
confoundsorbias)thatmaymakethedatameaningless.
Another problem with this between-within subject design is the comparison
group. These researchers compare children with autism to children with a variety
of behavioral and non-autistic developmental disorders. This may have been
important for the researchers’ purposes; however, it is irrelevant when it comes
to determining the efcacyofoneautismtreatment protocoloveranother(which
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is important for our purpose). Put simply, these studies lack an appropriate
controlgroup;therefore,thedesignisinadequateforexaminingoutcome data.
Rogers (1998) recognizes the lack of a control group as being problematic
when she states: “The two models [The Denver Playschool and LEAP] await
the application of methodologies involving control groups of matched children,
random assignment, blind raters, numerous outcome measures, and long-term
follow-up before the effectiveness of the models can be evaluated according to
the EST [Empirically Supported Treatments] criteria.”7
Inordertoaddresstheissueofaninadequatecontrol group, the researchers use
prediction analysis which is designed to take into account the concept that the
children are improving based on the treatment and not simply due to maturation.
Based on this analysis, they would have expected the children to develop only
seven months of progress in a nineteen-month period. However, the children
with autism actually gained seventeen months of language in the nineteen-month
period, at which point the gains stabilized but did not increase. Although this is
interesting and certainly suggests that this method is better than doing nothing,
theimportantquestion remains whether the Playschool model is better than other
treatment methods for children with autism. In other words, could children
with autism have actually surpassed their typically developing peers with early
intensive intervention rather than lagged slightly behind, thereby, narrowing but
never closing the gap? The latter point is what Rogersetal.(1991)suggest.
An additional concern regards the individual progress of those children with
autism in the study. Since only the average (mean)scores of the group of children
with autism were presented, we have no way to check whether some children
gainedsignicantly,relativetootherswhodidnot.Itwouldbeinteresting to
see whether a subset of the children with milder autism improved at a greater
rate than those more severely impacted. For that, we would need each subject’s
Section One: What Works and What Doesn’t?
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pre and post scores which, unfortunately, were not presented in the 1991 or the
1987 Rogers et al. studies.
What does the therapy actually look like?
The Playschool curriculum is delivered in a classroom setting, with six to twelve
children, one teacher and two aides, although the PlayschoolOutreachProject
tookplaceinvespecial education classrooms in Colorado, in which there was
at least one child with autism. No other information regarding the composition of
these classrooms is provided in the literature on the Playschool method of autism
intervention. While the articles discuss the general components of the curriculum
thatistaught,thereisinsufcientinformationonthespeciccontentandIwas
unable to locate a published manual which lays out the treatment protocol in
sufcientdetail.Itisknownthatsomeofthechildrenwerealsoprovidedwith
one-on-one psychotherapy sessions using play techniques. Althoughthereis
some variation, thePlayschoolis described as involving fourandone-half(4
1/2)hoursperday,twelvemonthsperyear.8 In the Rogersetal.(1991)study,
the average time spent by children at the Playschool was eighteen months.
What else do I think?
Based on the information provided, it is difcult to determine exactly what
the intervention at the Playschool looks like. The program is implemented in
a classroom setting utilizing a structured environment and routine; however, it
isunspeciedastohow,precisely,thisisaccomplished.Theresearchers write,
“the whole environment operated as an ego structure that regulates, mediates,
selects, focuses, and organizes sensory stimulation for the children to maximize
learning.”9 Unfortunately, it does not state how these goals are accomplished or
howthisenvironmentmaximizeslearning.Equallyunclearisthecontentofthe
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curriculum. The basis for all teaching apparently was done through play; however,
no more information than this is provided. It is not stated what the children learn
through play, or what kinds of play tasks occur. The lack of clarity surrounding the
proceduresusedmakesitadifcultmodel to evaluate and replicate. In addition,
reported results from the study are confusing and inconsistent due to the type
ofmeasuresusedandtheirlackofstandardization.Asaresult,itisdifcultto
assessthesignicanceoftheobservedchanges.Theintervention seems like
a“hodgepodge”ofapproaches,someofwhichareconicting,i.e.,achild-led
developmental approach combined with non-specic behavioral approaches.
Finally, these researchers are sympathetic to the psychiatric approach to autism
intervention which has not been demonstrated to be effective for children with
autism. They state: “...there has been a strong tendency in the interventioneld
to eschew the ‘psychiatric’ approach. Unfortunately, this may have also led to
relative neglect of sound treatment strategies for addressing the social, emotional,
communicative, and egodecienciesofchildrenwithPervasive Developmental
Disorders.”10 Unfortunately, these researchers do not present any data or evidence
for the sound psychiatric treatment strategies to which they refer. In my view,
that’s a serious problem.
Would I try it on my child?
Based on the data that has been collected from the Playschool autism intervention
program, if my child were of preschool age, I would not put her into the Playschool
preschool program. Although my personal philosophy would very much like to
see a child-led approach be successful for autistic children, the studies published
to date simply provide no evidence that this treatment program is effective for
children with autism. Therefore, I would not have my child participate in the
Playschool autism intervention program.
Section One: What Works and What Doesn’t?
101
What kind of study would I like to see the Colorado
Health Sciences researchers do?
Inordertobeabletoadequatelyassess the ColoradoHealthSciences“Playschool”
program as an effective intervention for children with autism, there needs to be
improvements to the methodology used in their outcome studies. Although they
published a study which describes how important it is to train teams to implement
the program model,1 there does not appear to be a strict treatment protocol that
all practitionersmustfollow.Increasingthequality(ordelity)ofthetreatment
through a more explicit methodology, will increase the strength of the conclusions
that can be made about the program based on evidence.
Currently, the available assessment of the Playschoolprogramhasinsufcient
controls to objectively make conclusions regarding itsefcacy.WhatIwould
consider to be the essential components of future research done on the Playschool
program would be: a randomly assigned control and experimental group;
valid and reliable assessment measures; independently diagnosed subjects with
autism; independent assessment of valid dependent measures; results based on
standardized calculations, rather than a developmental rate, and an evaluation of
the statisticalandclinicalsignicanceoftheresults. It would be more valuable
to have all of these components present in one outcome study, rather than several
studiesusingonlysomeoftheseimportantresearchrequirements.Todate,it
is impossible to conclude that the Playschool program has benecial effects
for individuals with autism, because in the existing studies, the lack of control
prevents the results from being attributed to the intervention alone. Additionally,
further comparative research is required to assess whether the Playschool
approach is as effective as current, evidence-based alternatives.
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Who else recommends for or against The Playschool as
a method for the treatment of autism?
As compared to many other methods, there has been little attention paid to the
Playschool program by parents or professionals, probably because this model
hasnotbeenadoptedonabroadbasis.Consequently,therearenoreputable
organizations taking a stand either way regarding the program. That said, it is
important to understand that the underlying philosophy of the Playschool is
treatment through play. To see what many organizations have said about the lack
of sciencebehindtheroleof“play”inthetreatment of children with autism,
please refer to the section in this book on the DIR “Floor-Time”model.
So you’re still on the horns of a dilemma?
I would like to leave you with a thought to ponder. This treatment model has
beenaround since1981.Wearenowtwenty-veyears on,andtherehasnot
been a single replication of this model using a between-subject design. Rogers
recommended that a controlled study be done on this treatment model back in
1998. We are still waiting. As your child has only one chance to have effective
early intensive treatment, and the Denver Playschool model has not been
measured against other intensive treatment methods with better outcome data,
please understand that choosing this method — exclusively — will block more
effective early intensive treatment options.Consequently,inmyopinion,you
would be engaging in experimentation with your child.
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence to conclude
that the Playschool autism intervention method is effective in substantively
improving the condition of autism.
Section One: What Works and What Doesn’t?
103
Endnotes for Playschool
1Rogers, S., H.C. Lewis, and K. Reis. 1987. “An Effective Procedure for Training Early Special
EducationTeams.”Journal of the Division for Early Childhood, Vol. 11, No. 2, pp. 180-188.
2Weiss, R. 1981. ”INREAL intervention for languagehandicapped and bilingualchildren.”
Journal of the Division of Early Childhood, Vol. 4, pp. 40-51.
3Rogers,S.,H.C.LewisandK.Reis,(seen.1above),p.82.
4Rogers, S., et al. 1986. “An approach for enhancing the symbolic, communicative, and
interpersonal function of young children with autism or severe emotionalhandicaps.”Journal
of the Division of Early Childhood, Vol. 10, No. 2, pp. 135-45.
5Rogers, S.J. 1989. “An Effective Day Treatment Model for Young Children With Pervasive
Developmental Disorders.”The American Academy of Child and Adolescent Psychiatry, Vol.
28, No. 2, pp. 207-214.
6Rogers, S.J., and D.L. DiLalla. 1991. “A Comparative Study of the Effects of a Developmentally
Based Instructional Model on Young Children with Autism and Young children with Other
Disorders of Behavior and Development.”Topics in Early Childhood Special Education, Vol.
11, No. 2, pp. 29-47.
7Rogers, S.J. 1998. “Empirically Supported Comprehensive Treatments for Young Children with
Autism.”Journal of Clinical Child Psychology, Vol. 27, No. 2, pp. 168-179.
8Rogers,S.J.,H.C.LewisandK.Reis,(seen.1above),p.208.
9Rogers,S.J.,H.C.Lewis,andKReis,(seen.1above),p.208.
10Rogers,S.J.,H.C.Lewis,andK.Reis,(seen.1above),p.213.
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Section One: What Works and What Doesn’t?
105
Other School-based Therapies: Giant Steps
What is Giant Steps?
The Giant Steps approach to autism intervention is based on a program developed
in Montreal by Berringerin1981.Subsequently,aGiantStepsschoolopenedin
St. Louis. The programdevelopsIndividualEducationPlans(IEPs)foreachchild,
which utilize a variety of therapies. The Giant Steps practitioners describe their
mix of therapies as follows: The child receives, “speech therapy, occupational
therapy, music therapy, play therapy/social communication, academic enrichment,
acquireddaily living skills, and a nutritional component.”1 The proponents of
the Giant Steps-St. Louis model* describe it as an ‘holistic’ approach which
uses multiple disciplines to address all the components that they determine to be
relevant for the individual with autism. Kimandcolleagues(1998),providea
sample of this cross-disciplinary programming, where, for example, if a child is
working on letter recognition, the occupational therapist will expose the child to
letters of different textures, the music therapist will introduce a musical exercise
that uses letters, and the speech/language pathologist will engage the child in a
language exercise that is related to teaching letters.
Another part of the Giant Steps autism intervention curriculum involves the use
of what their therapists term “invitationalequipment.”Therapistsencourage
thestudenttouseaparticularpieceofequipmentbymakingitexciting.They
explain these enticements, or invitations, as a way to allow the students to
“reduce avoidance behaviors...attheirownrate,”andtoexposethesestudents
to “exploration of objects and activities in a nonthreateningway.”2 The third
component of the Giant Steps program is to develop consistency between the
*We focus on the St. Louis program because the Montreal program has no publications based on the
Montreal site.
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school and home because this continuity is thought to maximize the child’s
progress. The Giant Steps therapists act as a liaison between both the school
“shadow” (classroom aide) and the parents regarding specic behaviors or
situations that arise. The philosophy of Giant Steps is to ultimately integrate the
child into the neighborhood school. The classroom shadow provides information
to the therapists at Giant Steps on how to adapt the child’s program so it is
consistent with the neighborhood school curriculum.
What evidence do the practitioners have that this
really works?
Unfortunately, there is no published research showing whether the Giant Steps
program is actually effective or not for its participants. There is a detailed
description of the program published in the Focus on Autism and other
Developmental Disabilities(1998),butnosystematically collected outcome data.
In the article describing the Giant Steps — St. Louis program, the authors state:
“The purpose of this article is to describe the Giant Steps — St. Louis program by
presenting datacollectedduringitsrstyearofevaluation.”3 The description of
the Giant Steps — St. Louis program is detailed; however, there is no meaningful
data collected on whether the program is effective. The authors themselves state
this to be the case as well: “However, the effectiveness of the program is yet
to be proved. An evaluation examining child outcomes, family satisfaction and
cost-effectiveness will provide additional information on the efcacyofthisnew
program.”4 It is notable that the researchers formally admit that at this point they
have no data regarding effectiveness.Irstdidacomprehensivedatabase search
in late 1998 and found only one descriptive article on this program. My latest
database search was done in 2006 and there is still no additional data published
on Giant Steps.*
*The database searches included Psychological Abstracts(PsycINFO),MedicalAbstracts (MEDLINE),
Educational Abstracts(ERIC)andtheCochraneData-bases of SystematicReviews(CDSR).
Section One: What Works and What Doesn’t?
107
What does the therapy actually look like?
Typically, a child will be in a Giant Steps program for half the day and in his
neighborhood school for the remaining half. While at the Giant Steps program, the
child may attend a general class for half an hour where the child works on a variety
of typical school tasks such as spelling, punctuation or reviewing a schedule. The
next three hours are spent participating in a variety of therapy sessions. These
sessions typically include music therapy, several short sensory integration therapy
sessions, an academic session and an occupational therapy/speech therapy session
with another child and two therapists. Lunchtime and the afternoon may be spent
with a shadow teacher or aide at the child’s local school. While at school, the
GiantStepsshadowadaptsandmodiesthecurriculum where necessary and
encourages peer interaction and friendships.
What else do I think?
The abstract of the article on Giant Steps — St. Louis indicates that it will
present, “datacollectedduringitsrstyearofevaluation.”5 As it turns out, this
so-called data consistsofquotes takenfromthe director of the program and
from members of the board of directorsfromaninterviewwithanunidentied
individual. It also includes a single case study, which merely outlines the daily
routine of one participant of the program. There is no information in the article
regarding the efcacy of this treatment intervention for any individual with
autism. In addition, this article was written seven years ago, yet no peer reviewed
journal article presenting any data on the effectiveness of the program has been
published since.
From the original article on the Giant Steps program, it is unclear how therapists
teach academic decitsoraddressbehavioral excesses. In addition, the article
contains no information to indicate how or even if the therapists or aide evaluate
the effects of the intervention, if any, on the child. There is mention in the article
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108
about which disciplinesareemployed(suchassensoryintegrationandspeech
andlanguage);however,thereappearstobenoexplanation regarding why these
disciplines are relevant and how they are applied. For example, the authors
mention the use of a “nutritional component”totheIEP’s; however, the only
mention of an intervention for expanding a child’s diet is “to expose the child
todifferentfood choicesacrossschoolactivitiesandathome.”6 The theories
behind many of the anecdotal “interventions” chosen by Giant Steps appear
quiteweakandareunsupportedbythedata. Not only is there no evidence of
the effectiveness of treatment outcome, there is no reason to believe that the
treatment will be effective in ameliorating autism.
In short, I am unable to conclude that Giant Steps is a viable treatment option
for individuals with autism because there isinsufcientdata to show that the
curriculum is effective for children with autism. Individualized therapy is only
as good as the method upon which it is based, and unfortunately, Giant Steps uses
many therapies that are not scienticallysubstantiated suchasmusictherapy,
sensory integration therapy, speech therapy or play therapy. Despite this lack
of evidence, Giant Steps relies heavily upon these therapies.
Would I enroll my child in a Giant Steps program?
I would not enroll my child in a Giant Steps program because they have not
shown any evidence that their school is effective. However, there are many
aspects of their program that do appeal to me intuitively. For example, the fact
that they try to prepare the child to integrate into his local school and target many
differentareasofdecit,suchaspeer interaction and classroom skills, is positive;
however,goodintentionsarenotsufcient.Iwouldneedtoseearigorousstudy
that provides evidence of the effectiveness of the Giant Steps program before
considering it for my child.
Section One: What Works and What Doesn’t?
109
What kind of study would I like to see the Giant Steps
people do?
If the Giant Steps curriculum is to be considered a legitimate educational
option for children with autism, I would need to see a study conducted which
incorporates the following components:rst,everychildinthestudy would need
to be diagnosed with autistic disorder or Pervasive Developmental Disorder Not
OtherwiseSpecied(PDD-NOS).Next,therewouldneedtobeanexperimental
and a control group; the control group could be children with autism in the public
school system and/or children using another well-settled type of therapy. In
addition, I would like to see at least twenty children per experimental condition,
each child tested on at least two widely-used, commonly-accepted autism
measurements, before and after the Giant Steps intervention. Moreover, I would
requirethattheresearchers who administer the pre and post tests to the autistic
children be uninformed as to which children are in the Giant Steps program and
which are in the control group. Furthermore, the children in the control group
would need to receive the same amount of one-on-one time as the children in the
Giant Steps program. All the children in the public school setting would need to
have a full-time aide trained in the other methods that were being compared.
Upon completion of the study, if the children enrolled in the Giant Steps program
fare better than the children in the public school system, with full-time support,
then we would know that the Giant Steps program is, indeed, superior to the
public education system for children with autism. The next step would be for
the Giant Steps practitioners to test their intervention model against the other
research-oriented schools and home-based intensive intervention models designed
for children of autism.
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Does anyone recommend for or against Giant Steps as
a method for the treatment of autism?
Due to the lack of popularity of this type of school and the lack of publications
generated by this group, there has not been much interest amongst the autism
community. Therefore, researchers preparing clinical guidelines for the treatment
of autism, such as the New York State Department of Health Report on Autism
Treatment7 have not included Giant Steps in their analyses. Although Giant Steps
was not evaluated by the New York Report, various components that comprise
the Giant Steps curriculum were. The New York Report evaluated music therapy,
play therapy and sensory integration therapy and recommended against these
therapies as treatments for autism.7
So you’re still on the horns of a dilemma?
If the lack of outcome data doesn’t dissuade you from enrolling your child in a
Giant Steps program, please understand that without augmenting your child’s
program with a well-settled treatment program, you may be completely wasting
your child’s valuable developmental window.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence that Giant Steps
has an effective school-based curriculum which improves any of the symptoms
of autism in children.
Section One: What Works and What Doesn’t?
111
Endnotes for Giant Steps
1Kim, S., L. Richardson, G. Yard, M. Cleveland and K. Keller. 1998. “Giant Steps – St. Louis:
An Alternative Intervention Model for Children with Autism.” Focus on Autism and Other
Developmental Disabilities, Vol. 13, No. 2, pp. 101-107.
2Kim,S.,L.Richardson,G.Yard,M.ClevelandandK.Keller,(seen.1above),p.103.
3Kim,S.,L.Richardson,G.Yard,M.ClevelandandK.Keller,(seen.1above),p.101.
4Kim,S.,L.Richardson,G.Yard,M.ClevelandandK.Keller,(seen.1above),p.106.
5Kim,S.,L.Richardson,G.Yard,M.ClevelandandK.Keller,(seen.3above),p.101.
6Kim,S.,L.Richardson,G.Yard,M.ClevelandandK.Keller,(seen.2above),p.103.
7Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany(NY):New York State Department of Health, pp. IV-15 to 21, IV-14.
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Section One: What Works and What Doesn’t?
113
Other School-based Therapies: Daily Life
Therapy/The Higashi School
What is Daily Life Therapy?
Daily Life Therapy(DLT)isaneducationalmodel which originated in Japan.
It is based upon the method pioneered by Dr. Kiyo Kitahara. The model is
school-based and integrates students with autism and their typically developing
peers. Quill,etal.(1989)describethefollowingveprincipleswhichunderline
the therapy: 1)physical exercise; 2)an art-basedcurriculum (music, art and
movement components);3) group instruction; 4)learningthroughimitation,
and5)highlystructured routines.
The Daily Life Therapy model uses vigorous physical exercise to address
stereotypic and undesirable behaviors. Proponents of this approach believe that
children with autism have high levels of beta-endorphins(aneurotransmitterthat
blockspain andbooststheimmunesystem), duetobeinginstates ofchronic
hyper-arousal. They claim that intense physical exercise results in the natural
release of these beta-endorphins, which has a positive impact on behavior.1 A
second component of DLT is a curriculum which is largely based on different
art forms, which include the above-mentioned music, art and movement. The
rationale behind this curricular content is to develop the child’s strengths, to give
children the opportunity to express themselves and to develop self-esteem.2
Using the Daily Life Therapy model, learning is taught through gross-motor and
visual-motor imitation, and verbal imitation.3 The Daily Life Therapy in Japan
integrates autistic peers and uses peer models to facilitate imitation; however,
this component of the program is not available in the Daily Life Therapy school
in Boston.Consequently,theBostonHigashi School is a segregated setting.
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What evidence do the practitioners have that this
really works?
Although we netted several articles which discuss the DLT method, there were
only three articles devoted solely to this method and only one study with outcome
data which is based on the Boston Higashi school. There are currently no studies
published on the Japanese DLT schools. The Boston study4 is an observational
study with no pre and post measures taken on children in the study. In addition,
this study lacks a control group. Without these measures or a control group, there
is no way to conclude that the improvements purportedly made by the subjects
were a result of the treatment. An additional weakness of the study is that only
six children participated and there were no IQ scores available for these children
prior to attending the school. Furthermore, by the end of the observational study,
only three of the original six children remained in the study. Unfortunately, the
signicanceofsucha small number ofchildreninthestudy becomes readily
apparent when analyzing the results. Data from the study demonstrate that one
of the children’s appropriate responses actually decreased during intervention.
Because of the small sample size, we could mistakenly conclude that there was
approximatelyaseventeenpercent(16.67%)decreaseinappropriate responses
over the course of the therapy. Also, while it appears that some improvement
occurred in attending and with inappropriate responding amongst the children
in the study,nosignicance values (“pvalue”)areprovidedtodeterminethe
chances that these results did not, in fact, happen by chance. Without these
“signicance”scores,itisdifculttoconcludethatmeaningfulchangesoccurred
with these children via Daily Life Therapy. In short, there are so many awsin
the design of this study, that I can make no conclusions whatsoever regarding
the efcacyofDaily Life Therapy.
Section One: What Works and What Doesn’t?
115
What else do I think?
As mentioned above, the results of the study indicate that there was no
improvement made in theparticipants’measureof“appropriateresponding,”and
that one subject actually decreased in level of appropriate responses. Larkin and
Gurry(1998)addressthesignicanceofthisissuewellintheirdiscussionofDLT.
In fact, they point out that while some progress was noted in behavioral issues,
“the lack of progress in Appropriate Responsesisveryimportant.”5 They describe
thatthetargetstudents,“appearednottolearntofollowspecicdirections or to
comprehendwhattheteacherwasaskingthemtodo.”6 While students may be
behaving and attending more appropriately, it must be established what they are
learning in regard to academics, language and communication skills. Larkin and
Gurry(1998)describetheearlycurriculumas“nurturing,”andtheyspeculate
that the reason for seeing no progress in appropriate responses may be that there
are few demands placed on the youngest students. In other words, Larkin and
Gurry suggest that due to a lack of emphasis on appropriate responses, there has
been no progress in this area.
What does the therapy actually look like?
Group instruction is provided in a classroom setting, with classroom sizes ranging
from six to ten students. The student-to-teacher ratio is, on average, eight students
tooneteacher(8:1).Thegroupofstudentsisviewedasawholeanditisgroup
achievement which is viewed as being paramount. Redirection is used exclusively
to maintain the unity of the group.7 Finally, independence is fostered through
strict daily classroom routines in art, music and movement. The entire day is
on a schedule and the beginning of each new activity is preceded by some type
of routine, such as an imitation routine using physical exercise.
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Would I try it on my child?
Based on the research to date, very little can be concluded about the efcacyof
Daily Life Therapy. The lack of data from the Japanese school forces parents to
evaluate the therapy based solely on the single study of the Boston Higashi school
in Massachusetts, which was established in 1987. I would not enroll my child
in the Higashi school simply because the data is inconclusive. More research is
requiredbeforeitcanbeconsideredasaviabletreatment option. However, some
of the ideas of the Japanese Higashi curriculumsuchas:1)physical exercise
to decrease stereotypic behavior;2)peer interaction;3)imitation skills,and4)
a highly structured environment are compelling. Taken alone, there is some
(althoughnotcomprehensive) evidence that the four elements in the Higashi
curriculum listed above may be important for children with autism. Another
reason I would not be inclined to put my child in this school is the lack of emphasis
on teaching children with autism academic and functional skills. Although
“attending”behavior and a decrease in inappropriate behavior are important,
thereasonfortheirimportanceistohavethechild’sdecienciesappropriately
addressed, preventing anti-learning behaviors from blocking progress.
What kind of study would I like to see the
Higashi School do?
If the Higashi School is to be considered a legitimate educational option for
children with autism, I would need to see strong data from a study which has, at
minimum, a hypothesis stating that those children who participate in the Higashi
School over the period of a year are expected to show a decrease in the symptoms
associated with autism(basedoncommonly-accepted,rigorously-tested measures
for autism). In addition, I would like to see a control group consisting of
autistic children in the public school system, thereby creating a well-controlled
study with at least twenty children per experimental condition in the study.
Section One: What Works and What Doesn’t?
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Furthermore, several widely-used, commonly-accepted autism measurements
need to be administered to each child, before and after the treatment. Moreover,
the researchers giving the autistic children the pre and post measure for autism
must not know which children are in the Higashi School and which are in the
controlgroup(thechildrennotenrolledintheHigashischool).Anotherimportant
criterion for the study is that all the children in the experimental group should
be enrolled in the same Higashi school.
Upon completion of the study, if the children in the Higashi School fair better
than the children in the public school system, then we would know that the
Higashi School is indeed a viable alternative to the public education system for
children with autism. The next step would be for the Higashi School to test its
intervention model against the other specialty school programs and home-based
intensive behavioral intervention models designed for children of autism.
Who else recommends for or against Daily Life Therapy
as a method for the treatment of autism?
This innovative model gained popularity when it was introduced to the U.S. in
1987. The autismtreatmentmodeldidnotourishinNorthAmerica;therefore,
the lack of interest did not motivate the international autism research community
to further studythisschool.Consequently,wecouldnotndclinicalpractice
guidelines or other evaluations that address the efcacyoftheHigashi School
model.
So you’re still on the horns of a dilemma?
The Higashi model is not an option for most parents due to the small number of
schools adopting this model; however, if you do live near one of the few sites
that offer this program and would like to enroll your child, I would suggest that
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you consider the fact that due to the lack of data showing that this method is
effective, you may want to augment your child’s treatment with a well-settled
treatment program so that your child will progress at least when not at school.
What’s the bottom line?
Based on the scienticresearchtodate,thereisinsufcientevidence that Daily
Life Therapy has an effective curriculum for decreasing the symptoms associated
with the condition of autism in children.
Section One: What Works and What Doesn’t?
119
Endnotes for the Higashi School/Daily Life Therapy
1Quill, K., S. Gurry, and A. Larkin. 1989. “Daily Life Therapy: A Japanese Model for Educating
Children With Autism.”Journal of Autism and Developmental Disorders, Vol. 19, No. 4, pp.
625-635.
2Quill, K., S. Gurry, and A. Larkin,(seen.1above),p.633.
3Quill, K., S. Gurry, and A. Larkin,(seen.1above),p.631.
4Larkin, A.S., and S. Gurry. 1998. “Brief Report: Progress Reported in Three Children With
Autism Using Daily Life Therapy.”Journal of Autism and Developmental Disorders, Vol. 28,
No. 4, pp. 339-342.
5Larkin, A.S., and S. Gurry,(seen.4above),p.341.
6Larkin, A.S., and S. Gurry,(seen.4above),p.341.
7Quill, K., S. Gurry, and A. Larkin,(seen.1above).
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Section One: What Works and What Doesn’t?
121
Other School-Based Therapies: The Walden
Preschool
What is the Walden Preschool?
Originallyestablished in 1985, the Walden Preschool offers a full-time classroom
integrating children with autism into a group with their typically developing
peers. The Walden Preschool is based on the Toddler Center Model, a day care for
typical children. The philosophy of the school is one of integration, with a focus
on incidentalteaching(unstructuredandopportunistic)tofacilitatelanguage and
social interaction. The curriculum is broken down accordingtorstandsecond
year goals. The goalswithintherstyeararetofacilitatethefollowingobjectives:
social responsivity in the child towards teachers, materials and activities; verbal
objectives such as choice-making and natural language consequences;play and
daily living skills.1 The second year format focuses on peer social interaction and
kindergarten readiness.2 To achieve the above goals set out in the curriculum,
teachers use incidental techniques(naturallearning),anengineeredsetting(where
theclassroomissetupinawaythatfosterslearningparticularskills)andchild-
preferredactivitiesandmaterials(toenticethechildtousecertainmaterials).
Theenvironmentis described asa“free-choice”classroominwhichteachers
mustsuccessfully“market”materialsandactivitiestothechildren.3 The student
to teacher ratiois3:1(threechildrentooneadult).
Therearegenerallyfteentoeighteenchildrenperclassinthisprogram,seven
students with autism and eight to eleven typical peers. The instruction style is
child-led with respect to learning, with the exception of some direct instruction to
teach social interaction skills to both typically developing and autistic students.
No student undergoes compliance training to avoid inadvertently decreasing
spontaneous initiations between student and teacher. Behavior problems are
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addressed proactively by attempts at engineering the environment, the use of
child-preferred activities and materials, limiting the classroom rules, minimizing
“downtime,”andteachingreplacementbehaviors. The belief is that increasing
“fun”decreases behavior problems.4Once maladaptive behaviors occur, the
authors explain that natural and logical consequencesareusedinresponse. The
Walden Preschoolalsoclaimstouseonlyso-called“positive”behavior strategies,
although they also describe the use of time-out procedures.Onrareoccasions,a
studentmayrequireanindividualizedbehavior management procedure. However,
they claim that behavior management procedures are generally avoided at the
Walden Preschool. Since the establishment of the original Walden Preschool
and Toddler Programs,therehavebeensomemodicationstothemodel. These
will be discussed in the evidence section below.
What evidence do the practitioners have that this really
works?
There is currently no evidence that the original Walden Program is an effective
intervention for children with autism. The only available information regarding
outcomes of students at Walden are provided in book chapters5,6 describing
preschool programs for individuals with autism, rather than in peer-reviewed
journal articles. The original data reports that the rate of verbalization for children
with autismincreasedfrom four to thirteenpercent (4–13%).Ratesofpeer
interactions increased in six out of fourteen students with autism; however, it is
unspeciedhowmuchincreasewasobserved.Unfortunately,notrial-by-trial
data is taken in the classroom. Assessments are based only on time samples on
videotape.Thenatureandqualityoflanguage and interaction changes observed is
unclear. It is unreportedwhetherornotthesechangesarestatisticallysignicant,
or if they could have been achieved simply by two years of maturation alone.
Also, peer interaction changes were assessed using the indirect measure of how
many times students with autism were approached by their typical peers. This
Section One: What Works and What Doesn’t?
123
assessment might not be a valid measure of gain in social interaction but, rather,
merely measure the gains made by typical students in approaching their autistic
counterparts.
More updated programs describe multiple zones(teachingstations)withateacher
inchargeofeachzone,rotatingfromzonetozoneeveryfteenminutes.The
idea behind this setup is to increase opportunities for incidental teaching,7 which
isasignicantcomponent of the Walden philosophy. In addition, the newer
rendition of the Walden School model provides one-on-one teaching pullout
sessions in a different room. Although the original Walden model used incidental
teachingexclusively,theChildren’sToddlerSchool(theCTS Program based in
SanDiego)incorporatesdiscretetrialtraining(ahighlystructuredbehavioral
teachingtechnique). Thismight be amuch better model for the child, as it
introduces discrete trial training into the CTS Program; however, this no longer
qualiesasa partialreplication of the original Walden program, but rather, a
signicantdepartureinphilosophy and technique.Infact,theStahmer et al.8
model uses a large variety of techniques,includingincidental teaching, pivotal
response training, discrete trial training, structured teaching, and Floor-Time.9
The resultsoftheStahmeretal.studynowreectamelangeoftechniques,some
of which have no evidence that they are, in any way, effective. For our purposes,
the resultsofthisquasi-experimental design are unfortunate because they might
lead some parents to adopt a basketful of techniques,ninety-vepercentofwhich
may be ineffective. In my opinion, these researchers have done a disservice,
astheyhavenowfurtherconfusedthequestion of efcacyinautism treatment.
In addition, two children in the study received additional in-home therapy,
and one of those children received ten hours of discrete trial training per week
(whichishighlyeffective).Unfortunately,theresults of the study are all done
by comparing the mean scores at entry with the mean scores at exit. Therefore,
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we have no idea whether a few children pulled up to the mean considerably, or
whetherallthechildrencontributedalmostequallytothescores. The statistics
presented suggest that a few children were responsible for a higher post mean
score.* Also, available publications give no indication whether the gains were
due to discrete trial training, Floor-Time, pivotal response training, incidental
teaching, or structured teaching. The researchers agree when they state: “Given
that this programcontainsseveralelements(i.e.,inclusiveclassroom,special
skillstraining,parenttrainingandsupport),itisnotpossibletodeterminewhich
components were responsible or necessary for the children’s progress.”10 The
authors continue: “In all probability, the combination of these three elements
contributedtothechildren’sprocess.”11 This claim is one for which they have
no support and which is not substantiated by science.
What does the therapy actually look like?
The original Walden Preschool classroom operates out of Emory University, as
part of the Emory Autism Resource Center. It is a full-time classroom which
is attended year round. All students with autism must receive at least one
independent diagnosis before admittance. Teaching occurs using incidental
techniques,whicharedescribedbyMcGee, Daly and Jacobs12asfollows:1)the
naturalenvironmentisarrangedtoattractthechild;2)thechildtheninitiatesthe
teachingexperience;3)theinitiation by the child is treated as an opportunity to
elaborateby theteacher;4)thechild’sexpected response isconrmedbythe
teacher,and5)theaccesstothedesiredmaterialoractivityisgrantedcontingent
upon the desired response.Teachersareassignedto“zones”(teachingstations)
within the classroom, based on activities, and are responsible for engagement
and redirection of the students within that teaching station.
*The standard deviations are very large particularly when it comes to measuring communication - at intake
M=71.1,(s.d.13.9)andatexitM=79.3(s.d.17.1).
Section One: What Works and What Doesn’t?
125
Would I try it on my child?
Although my child is far beyond the preschool stage, I would have never put
her into a program that uses the Walden Preschool model primarily because
these researchers have not provided any reliable data whatsoever to show that
incidental teaching actually works. In terms of their partial replication, they add
everythingbutthe“kitchensink”totheWaldenPreschoolandthisconfounds
the data. Simply put, I would not enroll my child in this program because I have
no guarantee that most of the techniquesusedhaveanydata supporting them.
Unsupported eclecticism in autism treatment is highly problematic.
What else do I think?
Inherent in the incidental approach(non-structured,opportunisticteaching)to
teaching individuals with autism,istherequirementthattheteachingexperience
beinitiatedbythechild.Oneofthediagnosticcriteria for autistic disorder is a
severedecitinsocial interaction, which includes social initiations. Despite the
greatesteffortbyteachers,these“initiations”occuronaveryinfrequentbasis,
relative to typically developing children. This results in fewer learning experiences
forthechildafictedwithautism than that of the typical child. In addition to
fewer opportunities, the child with autism often requires mass repetitions of
information(orpractice)inorderforknowledgeorskilldevelopment to occur.
Thecombinationoffeweropportunitiestolearnandtherequirementforgreater
exposure in order to learn, leads me to suggest that the incidental technique
(where every opportunity must be anticipated and acted upon to maximize
interaction)maynotbeintensiveenoughtomaximizethechild’sdevelopment.
This is particularly important during the early years of the child’s life, when
optimal potential for learning exists. While the chapter on the Walden Preschool
method claims that research shows incidental teaching maximizes learning in this
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population, there is actually little peer-reviewed data on incidental learning on
children with autism 13,14,15,16,17,18 and that which does exist, works only on very
narrow,specicskills, with very few children, and does not control for prior
learning histories, which may severely bias upward the purported effectiveness
of the technique.Inshort,althoughIapplaudthepreschool’sattempttoinclude
children with autism into a mainstream setting, successful inclusion takes much
more work than simply putting the children together and watching the magic
happen.
The preschool seems to recognize the need for one-on-one sessions for certain
skills; however, these sessions in the original program19 occur for only a short
fteenminutesatatime,nomorethanvetimesperdaywithanemphasisplaced
on the importance of learning as a group.
What kind of study would I like to see the Walden
people do?
In order to objectively assess the effectiveness of the Walden program for
individuals with autism, it is necessary to have controlled research which
determines whether their program is effective in producing signicantchange
(thatisnotassociatedwithmaturationalone),inareasrelevanttothediagnostic
decits and excesses associated with the disorder. Once signicant change
has been demonstrated, the efcacyoftheprogram needs to be compared to
the efcacyexistingprogramsthatarealreadyeffective. I would need to see
evidence that the learning which occurs in the Walden program is the same as, or
better than, that which occurs in other treatmentprograms.Specically,instead
of confounding the variables by using an eclectic approach, proponents of the
Walden School should create an experiment where children are assigned to
conditions in which incidental teaching, Floor-Time, pivotal response training, or
structured teaching are used exclusively. Then the outcomes between conditions
Section One: What Works and What Doesn’t?
127
need to be compared. Unfortunately, I doubt that researchers would be able to
ndenoughparentstoagree to have their children in this kind of study, since
these methods do not represent state-of-the-art inclusion programs for children
with autism despite what these researchers claim.20
Who else recommends against the Walden Preschool
Model as a method for the treatment of autism?
Althoughwecouldnotndanyreputableorganizationsthatrecommendforor
against the Walden Preschool, many organizations have come out recommending
against many components of the Walden Preschool model described by Stahmer
etal.(2004).Forinformationonrecommendationsofeachparticularcomponent
in the latest incarnation of the Walden Model, I suggest that you go to the sections
in the book which analyze the efcacyofFloor-Time, Pivotal Response Training,
TEACCH, and behavioral treatment.
So you’re still on the horns of a dilemma?
For parents evaluating autism treatment programs, the Walden School presents a
difcultchallenge,aseclecticism is generally thought of as being a good thing;
however, it is crucial to recognize that in the world of autism treatment, there is a
programaroundeverycornersupposedlyoffering“state-of-the-art”intervention
techniquesanditisoftendifculttodeconstructbaby-sittingfromactual autism
treatment. It is important to remember, though, that every moment your child
is not engaged in genuine science-based treatment, your child’s valuable time
is being wasted by perhaps well-meaning adults who may care deeply about
children, but simply do not have data to support the treatment techniquesthey
practice and endorse. In other words, the road to hell is often paved with good
intentions.
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What’s the bottom line?
Based on the scientic research done to date, there is insufcient evidence
to support the claim that either the original Walden Preschool or the updated
Children’s Toddler School has an effective curriculum for the treatment or
education of children with autism.
Section One: What Works and What Doesn’t?
129
Endnotes for Walden Preschool
1McGee, G.G., T. Daly, and H.A. Jacobs. 1994. “ The Walden Preschool.”InS.L.Harris, and
J.S. Handleman, eds., Preschool Education Programs for Children With Autism. Austin, TX:
Pro-Ed., pp. 127-162.
2 McGee, G.G., T. Daly, and H.A. Jacobs,(seen.1above).
3McGee, G.G., T. Daly, and H.A. Jacobs,(seen.1above).
4McGee, G.G., T. Daly, and H.A. Jacobs,(seen.1above).
5McGee, G.G., T. Daly, and H.A. Jacobs,(seen.1above).
6McGee, G.G., Morrier, M. and Daly, T. 2000. “The Walden Preschool.”InS.L.Harris and J.S.
Handleman, eds., Preschool Educational Programs for Children with Autism. 2nd ed. Austin,
TX: Pro-Ed., pp. 157-190.
7Stahmer, A.C., and B. Ingersoll. 2004. “Inclusive Programming for Toddlers with Autism
spectrum disorders: OutcomesFrom the Children’s Toddler School.” Journal of Positive
Behavior Interventions, Vol. 6, No. 2, pp. 67-82.
8Stahmer,A.C.,andB.Ingersoll,(seen.7above).
9Stahmer,A.C.,andB.Ingersoll,(seen.7above),p.72.
10Stahmer,A.C.,andB.Ingersoll,(seen.7above),p.80.
11Stahmer,A.C.,andB.Ingersoll,(seen.7above),p.80.
12 McGee, G.G., T. Daly, and H.A. Jacobs,(seen.1above).
13Farmer-Dougan,V.1994. “IncreasingRequests by Adults with Developmental Disabilities
Using Incidental Teaching by Peers.”Journal of Applied Behavior Analysis, Vol. 27, No. 3,
pp. 533-544.
14Miranda-Linne,F.,andL.Melin.1992. “Acquisition,Generalization, and Spontaneous Use
of Color Adjectives: A Comparison of Incidental Teaching and Traditional Discrete-Trial
Procedures for Children with Autism.”Research in Developmental Disabilities, Vol. 13, No.
3, pp. 191-210.
15McGee, G.G., et al. 1992 “ Promoting Reciprocal Interactions via Peer IncidentalTeaching.”
Journal of Applied Behavior Analysis, Vol. 25, No. 1, pp. 117-126.
16Elliott,R.O.Jr.,etal.1991.“AnalogLanguage Teaching Versus Natural Language Teaching:
Generalization and Retention of Language learning for Adults with Autism and Mental
Retardation.”Journal of Autism and Developmental Disorders, Vol. 21, No. 4, pp. 433-447.
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17McGee, G.G., et al. 1986. “An Extension of Incidental Teaching Procedures to Reading
Instruction for Autistic Children.”Journal of Applied Behavior Analysis, Vol. 19, No. 2, pp.
147-157.
18McGee, G.G., et al. 1985. “The Facilitative Effects of Incidental Teaching on Preposition Use
by AutisticChildren.”Journal of Applied Behavior Analysis, Vol. 18, No. 1, pp. 17-31.
19McGee, G.G., T. Daly,andH.A.Jacob,(seen.1above).
20McGee, G.G., T. Daly, and H.A. Jacobs,(seen.1above),p.80.
Section One: What Works and What Doesn’t?
131
p Floor-Time (Greenspan/Developmental, Individual
Difference, Relationship Model – DIR)
p Options Institute/Son-Rise Program
p Relationship Development Intervention (RDI)
p The Learning to Speak Program
Child-lead/Parent-facilitated
Therapies Section 1.3
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Section One: What Works and What Doesn’t?
133
Child-lead/Parent-facilitated Therapies:
Floor-Time
What is Floor-Time?
Floor-Time (also referred to as the Developmental, Individual Difference,
Relationship Model – DIR)isrooted in adevelopmental approach to autism
therapy. However, there are componentsofthepsychodynamic(orFreudian)
paradigm involved as well. This modelisoftenreferredtoasthe“Greenspan”
method, named after the researcher who developed the treatment model. The
philosophy of this approach is to turn everything the child does into a social
interaction.1 Greenspan et al. state: “...the earliest therapeutic goals are to
mobilize shared attention, engagement, and intentional back-and-forth signaling.
Interactive experiences enable the child to abstract a sense of self and form
higher level cognitive and socialcapacities.”2 When interacting with the child,
the parent is instructed to focus on the child’s strengths, rather than weaknesses.
The ratio is one adult to one child and the teaching style is child-led. As a result,
parents are instructed to follow the child’s lead and allow the child to guide which
activity and interaction will occur. The curriculum follows a four-stage process,
designed as follows; Floor-Time I, Attention, Engagement, and Intimacy;
Floor-Time II, Two-way Communication; Floor-Time III, Feelings and Ideas;
and Floor-Time IV, Logical Thinking. Each component addresses a different
developmental issue to be targeted by parents interacting with the child on the
oor.Thecurriculum emphasizes emotions and empathy. Behavior is addressed
using a six-step procedure whichincludes:1)Small steps; 2)Floor-Time;3)
Solveproblemssymbolically;4)Empathize;5)Createexpectations and limits,
and6)The“GoldenRule”(moreFloor-Time).Thisprocedure is supposed to
be followed for all problematic behaviors in autism, including sleeping, eating,
discipline, toilet training, stubbornness and negativity, unusual fear, silly and
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anxious behavior, self-stimulation, repeating stories repetitively and swearing.
Proponents of this method maintain that all behaviors must be accepted, insofar
as the model’s premise is that parental “acceptance”willteachthechildtoaccept
hisorherownfeelingsand,subsequently,buildaloving, interactive relationship
with the parent.3
What evidence do the practitioners have that this really
works?
There is currently no clinically-validated evidence that the Floor-Time intervention
is effective for individuals with autism. Currently, there is only anecdotal
evidence from case studieswhichpurportthatchildrenhavebenetedfromthis
intervention: unfortunately, there are no controlledscienticstudies testing the
effectiveness of the Greenspan/DIR method. A comprehensive database search
netted nine articles. Most of the articles were descriptive in nature, discussing
the developmental perspective underpinning the Floor-Time intervention method.
There were no outcome studies with controls that have produced data to support
this method of autism therapy. The only difference between literature searches
that I did ten years ago and today, is that now there have been case studies
published. In fact, Greenspan and Wieder, retrospectively present 200 case studies
of children who have undergone this therapy in a book they have published, as
well as a report on these children in the Journal of Developmental and Learning
Disorders.4 In addition, Wieder and the Greenspan did a follow-up study on
sixteen children, ages twelve through seventeen. However, once again, their
reliance on case studies is problematic due to the notorious lack of reliability of
case studies, since there are no experimental controls. In their articles and books,
proponents of the Greenspan/DIR method make many claims about what they
call the “relationshipbased,affectcueing”approach(whichreferstotheway
weprocess emotional information), buttheyofferabsolutely no independent
evidence that this approach is effective.
Section One: What Works and What Doesn’t?
135
Proponents of the Greenspan/DIR approach are particularly critical of the
treatment with the most scienticsupportat this time,andspecically name
behavioral autism intervention as being responsible for more stereotyped and
more repetitive behavior as the children grow.5 In other words, the Greenspan/
DIR Model accuses intensive behavioral treatment of creating behaviors that
are characteristic of autism. These beliefs contradict existing research, which
shows that behavioral approaches can lead to treatment gains in the child with
autism.*
What does the therapy actually look like?
Proponents of Greenspan’s DIR method propose that parents engage in Floor-
Time with their children for twenty to thirty minute periods of uninterrupted
time, from six to ten times per day. During this time, the goal is to create social
interaction between the parent and child, which can be accomplished if parents,
“follow [their] child’s lead and play at whatever captures [their] interest;”
however, they add that it needs to be done in a way that, “encourages [their]
childtointeractwith[them].”6 In order to practically apply this, it is advised
that several tools be included to help facilitate the interaction. Parents are
instructed in the Floor-Time method to use the “sensory interests”ofthechild,
empathy, and vocal tone to interact with the child. They are also encouraged to
adapttothemoodofthechild,imitatethechildandbe“playfullyobstructive.”
Proponents also state that children aim to please by nature, and as a result, if the
*It is not surprising that proponents of treatments without evidence supporting their efcacywouldcritique
those treatments with overwhelming supporting data; however these claims further confuse parents who
need to know the state of the science when it comes to autism treatment. We could accurately characterize
the rivalry between DIR and behavioral treatment as one of dueling philosophies. Unfortunately for
proponents of DIR,theeldofbehavioral treatment wins hands down when it comes to scienticsupport
with data-based evidence produced from controlled studies. For a review of the behavioral literature, please
see the section on behavioral treatment.
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child is having difculties,itisoftennecessarytolowertheexpectations placed
upon the child.
What else do I think?
Practitioners of the Floor-Time method mention that, while it may be tempting to
work on language skills, color recognition or other age appropriate behavior, they
claim such an approach is ultimately not effective, in their view.7 Unfortunately, in
the case of autism,age-appropriatenessisdifculttogaugebecausethesechildren
varysomuch.However,ifonewaitsuntilthechildisready(whichisalsodifcult
todene),thechildmayneverbetaughtthe skills which approach the level of
his peers. There is much data in the literature on intensive behavioral treatment
that contradicts the “wait and see” philosophy. Proponents of Greenspan’s
DIR method also state that it is tempting to want to work on behaviors such as
head-banging, throwing tantrums, repetitively opening and closing doors, but
they urge that the primary goal of the treatment program is that the child must
feel calm and focused. Unfortunately, it may be critical to intervene and help
a self-injurious child as waiting may endanger the child’s health. It could be
a health concern if the child engages in self-injurious behaviors without adult
intervention to end them.
In addition, the goals of the Floor-Time/DIR programarequitevagueandassessed
primarily through parentalobservation.Examplesofquestions the parent must
ask when assessingthechildare:“Canthechildcalmhimselforherself?”;Can
thechild bewarm and loving?”;“Can thechild engage intwo-way gestural
communication, express a lot of subtle emotion, and open and close many circles
inarow?”;“Canthechildengageinpretend play and or use words to convey
intentionsor wishes?”; “Canthechild connect thoughtslogicallyand hold a
conversationforasustainedperiodoftime?”Unfortunately,theseareextremely
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subjective assessments. Parents will often have no point of reference to assess
andevaluateinformationnecessarytoanswerthesetypesofquestions. I likely
wouldhaveansweredthesequestions incorrectly regarding my child when she
wasyoung.Parentssimplydonothavetheskillsetrequiredtoaccuratelyassess
their child’s behavior and language accurately. I would further note that a large
number of professionalsintheeldofautism do not have these skills either.
Floor-Time/DIR practitioners claim that if parents are distracted or nervous,
they will not be successful at helping the child tune in and stay calm, which is
theirprerequisiteforsuccessintheprogram.Also,parentsarecautionedthat
their own feelings of depression, irritability or anger could well disrupt their
child’s treatment session. According to the Floor-Time/DIR philosophy, it is
essential for parents to act like someone with whom the child would want to
play. The above philosophy harkens back to the old Bettleheimian philosophy
of blaming the parent if the child is not showing improvement as a result of
intervention. Floor-Time/DIR proponents also include parental withdrawal
as a factor which can contribute to autistic behavior. This view that parents
are, in any way, the cause or contributors to autistic behavior simply cannot
be countenanced as it is based purely on conjecture with no empirical support
whatsoever. Greenspan et al. state: “Sally coped with her disappointment in her
son by withdrawing from him emotionally... Sally slowly let her emotions thaw.
As mother and son both opened up their range of communication, a chemistry
evolved between them.8 In my opinion, “mother withdrawal”isaconvenient
way of explaining away lack of progress when using the Floor-Time/DIR method
(sinceifnoprogressisobvious,theblamecanbelaidatthegroundoftheinternal
emotionalstateofthemother—averysubjectivemeasure).Thisdisclaimer
isacommonredagforineffectual interventions.The “curriculum” (and I
usethetermloosely)emphasizesthechild’sstrengthsandfocuseson“social”
interactions; however, it is unclear how the skill decitsareovercomeusingthe
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Floor-Time/DIR method. Without intervention in these decit areas, main-
streaming will be a goal that is simply unattainable for most of these children.
There are several awed assumptions made by Floor-Time/DIR proponents,
the most obvious is that by forcing the adult into a situation with the child, it
becomes a social interaction. This idea is particularly problematic with self-
stimulatory and ritualistic behavior. The parent may become incorporated by the
child as part of the self-stimulatory act or as part of some perseverative routine
(suchasamemorizedplayroutinethatmustbefollowedpreciselyoverandover
again);however,thisdoesnotnecessarilymeanthatthechildisinteractingwith
the parent in a social way. Through incorporating the parent in a rigid routine,
the child may avoid the parent’s intrusion and continue to engage in behaviors
that are intrinsically asocialordenedasantisocial based on societal norms.
Greenspanetal.,deneadultinteraction with an autistic child as interactive:
“by drawing your child’s motor behavior into interaction you are also making
it purposeful rather than self-stimulatory. Your child is now using his muscles
toactorcommunicateintentionally.”9 While attempting to make these types
of interactions more social,itisquitepossiblethattheadultmayinadvertently
reinforce harmful perseverative behaviors,therebyincreasingtheirfrequency.
These perseverative behaviors may have no communicative intent for the child,
whatsoever. Nowhere in the DIR literature do I see these problems acknowledged
and addressed.
Would I try it on my child?
When my child was diagnosed many years ago, I chose this child-led
method of treatment because I found the philosophy very compelling and the
diagnosing psychiatrist offered this treatment. Many of the ideas regarding
child-development and fostering a sense of the social self were attractive since
autism is characterized by social decits.Unfortunately,veryquicklyIlearned
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that well-intentioned philosophy and effectiveness of treatment are completely
unrelated. Although the child-led philosophytmypersonalitywell,Iultimately
had to reject this method based on the fact that there was no data supporting its
effectiveness; my child was wasting her time and I was wasting my money.
What kind of study would I like to see Floor-Time/DIR
practitioners do?
I would like to see DIR practitioners assess whether or not this particular
intervention is effective for individuals with autism. As a result, a controlled
study with relevant dependent measures such as DSM-IV diagnosis, autism
rating scales and IQ testing is required. We would need pretests and post-
tests for each child. Behavioral measures would be particularly important
here, to assess whether or not the maladaptive behaviors increase or decrease
infrequency asaresultofthisintervention. DIR needs to be compared with
existing treatments, to assess whether its results can match the efcacyofother
treatments. Unfortunately,thismaybedifculttodo;inorderto createtwo
groups of children who are randomly assigned, all parents must agree to have
their child assigned to one or the other group in the study. As most parents
have very strong views once they are introduced to the two methods, it is
doubtful researcherscouldndagroupofparentswhowouldagree to random
assignment. The ethics of random assignment in autism treatment studies
arehighlyquestionable,particularlyinthiscase,ifthe DIR method is to be
contrasted with an already well-settled method.
The research would also need to measure how the child’s social interactions
benet from this approach. Can the child interact with peers and others in
interactions that are meaningful to both, and in ways that the children will
encounter in their natural environment and throughout their lives? A major
challenge for these researchers will be in objectivelydeningandmeasuring
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dependent measures of subjective experience, such as emotion, empathy,
qualityofrelationships and the child’s acceptance of his or her own and others’
emotions. It is understandable why DIR practitioners have no research to support
their claims, considering that operationalizing a child’s “sense of their own
personhood”–theprimarygoalofthisintervention – is near impossible to do in
an accurate and reliable way. Unfortunately, until Floor-Time/DIR practitioners
agree to offer their methodforscientic scrutiny intheform of acontrolled
experiment, we will not know whether their techniquehasanyvaluetoofferthe
autism treatment community.
Who else recommends for or against Floor-Time/DIR as
a method for the treatment of autism?
The New York StateDepartmentofHealthReport(1999)didacomprehensive
literature review of the DIR method developed by Greenspan et al. They
concludedthefollowing:“...Thereiscurrentlynoadequatescienticevidence
(basedoncontrolled studies using generally accepted scienticmethodology)
that demonstrates the effectiveness of DIR-based interventions for young children
with autism. Therefore, the use of these approaches cannot be recommended as
a primary intervention method for young children with autism.”10 In addition,
The Association for Science in Autism Treatment suggests that professionals
need to disclose to those making treatment decisions for the child, the fact that
there is no peer-review of this treatment method.11 Further, Autism-Watch which
isafliatedwith“Quackwatch”considersthistreatment method “Unsettled or
Investigational.”12
So you’re still on the horns of a dilemma?
If you choose this method for your child, you need to understand that the method
is purely experimental. I urge you to have your child assessed using traditional
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141
psychometric measures by an independent, licensed psychologist prior to
treatment and visit the psychologist yearly to gauge whether there is any objective
improvement in your child’s condition. Understand, however, that you will not
know how far your child may have progressed with treatments which are more
scienticallysubstantiatedthanthe Floor-Time/DIR method, as you will have
spent valuable time on an unsettled treatment when your child is young and most
ready for developmental progress.
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence to conclude
that DIR is an effective treatment for children with autism.
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Endnotes for Floor-Time
1 Greenspan, S.I. 1992. Infancy and early childhood: The practice of clinical assessment
and intervention with emotional and developmental challenges, Madison, CT: International
Universities Press.
2Greenspan, S.I., and S. Wieder. 19991. “A functional developmental approach to autism
spectrum disorders.” Journal of the Association for Persons with Severe Handicaps, Vol. 24,
No. 3, p. 152.
3 Greenspan, S.I., S. Wieder, and R. Simons. 1998. The child with special needs: Encouraging
intellectual and emotional growth. Reading, MA, US: Addison-Wesley/Addison Wesley
Longman, Inc.
4Greenspan, S.I., and S. Wieder. 1997. ”Developmentalpatternsandoutcomes in infants and
children with disorders in relating and communicating: A chart Review of 200 cases of children
withautisticspectrumdiagnoses.”Journal of Developmental and Learning Disorders, Vol. 1,
No. 1, pp. 87-141.
5Greenspan,S.I.,(seen.1above).
6Greenspanetal.,(seen.3above),p.124.
7Greenspanetal.,(seen.3above),p.419.
8Greenspanetal.,(seen.3above),p.364.
9Greenspanetal.,(seen.3above),p.364.
10Guralnick, M. ed. 1999. Clinical practice guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years),Albany(NY):New York State Department of Health, p. IV-58.
11The Association for Science in Autism treatment. www,asatonline.org/about_autism/autism_
info10.html,(accessedApr.18,2005).
12Autism-Watch, www.autism-watch.org,(accessedApr.18,2005).
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Child-lead/Parent-facilitated Therapies: Options
Institute/Son-Rise Program
What is Options?
The Son-Rise program, run at the Options institute in Massachusetts, is
designed for individuals with a variety of diagnoses, including Autism and
Pervasive Developmental Disorder. The program is home-based and, notably,
is implemented by parents and their staff of volunteers. The philosophy of the
program is total acceptanceofthechild(includingallbehaviors).According
to the institute, there is no behavior that is inappropriate; therefore, adults are
encouraged to accept all behaviors and try to understand them in the context
of the child’s world.1 In order to convey the message of total acceptance and
a non-judgmental attitude towards the child, adults are instructed to engage in
whichever behavior their child chooses.2 The ratio of interventionis1:1(one
adulttoonechild),andtheteachingstyleischild-led(wheretheadultfollowsthe
child’sinterestanddoesnotdictatethestructureorthecontentoftheinteraction).
The program philosophy maintains that the child is the best person to guide what
learning should occur. No predetermined tasks are taught; what the program
attempts to do, instead, is encourage participation and motivation.3
What evidence do the practitioners have that this
really works?
There is currently no data to suggest that this intervention is effective. After
doing a comprehensive literature search, we netted only two published articles,
neither of which presented any outcome data.Onearticlestudies family stress
among those parents who chose the Son-Rise method for their child and the
other described the Son-Rise program itself. In short, there is no data concerning
efcacy.TheKaufmans,whoarethemainproponents of this approach, claim
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their child recovered from autism via the Optionsmethod. They have written
about their own experience, and a made-for-television movie was made about
their story. Other than these sources, the institute relies upon the anecdotal
reporting of parents who have completed the program. Unfortunately, these
reportsrepresentanunspeciednumberofpeople, with no objective method
of assessment. In addition, the subjective parental reporting has taken place
afterconsiderablenancialcostonthepartofparentswhichbiasestheparents’
observationsbecausetheyareheavilyinvested(emotionallyandnancially)in
the outcome.
When contacted by this author, the institute reported that they have not produced
any “statistics” becausetheyhavebeentoobusyhelpingasmanychildrenas
possible. They reported that the lack of data was due to the time and money that
research would involve.4 While I was informed that they have, “seen radical, if
not miraculous results from this approach,”theirbrochuredoesgoontocaution
that, “doing a Son-Rise program is no guarantee of any results.”5
What does the therapy actually look like?
The Options Institute offers a series of Son-Rise programs from Start-up to
“MaximumImpact.”Theseareavailableatvariousteachingcenters,including
Massachusetts, Illinois, Northern California and Rotterdam. The program
runsfromfourtovedaysandofferstrainingtoparentsonhowtounderstand
and teach their children. The approach emphasizes parental involvement. The
focus is on parental acceptance of the child and their child’s special needs, and
on developing a relationship or bond between parent and child. The cost of
the intervention varies with the amount of courses and consultation the parent
seeksfromtheinstitute’sstaff.Thecoursesrangefrom$1500–$2000(USD).
Information provided by the OptionsInstituteindicatesthatparentscanspend
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anywherefromafewhundreddollarsto$13,000USD.Hoursofintervention
areunspecied;however,theInstituterecommendsasmanyhoursaspossible.
One-to-one intervention at the Institute takes place in a separate room, free
from distractions. The techniquesuseddonotincludetheuseofanyphysical
prompting or guiding of the child. The parent is instructed to take on a non-
judgmental attitude and imitate whatever the child does. Apart from this, it is
relatively unclear exactly what techniquesareemployed.
What else do I think?
The philosophy and the practice of the Son-Rise programs seem somewhat
contradictory. While the philosophy emphasizes the acceptance of all behaviors
and the rejection of imposing adult priorities upon children, the program
proceeds to spend the maximal number of hours possible intervening to teach
socialization skills and other new behaviors.6 Additionally, Son-Rise literature
states that no predetermined tasks are taught; rather, the child is allowed to
create the child’s own learning situations.7 At the same time, the intensive Son-
Rise Program teaches parents and others how to determine baselines, observe
behaviors and chart progress.8 The catalogue also states that parents are taught,
“proveneducationaltools,”tofacilitate the growth of the child.9 This would
appear to indicate that recording behavioral change is emphasized, which
seems to contradict the philosophy of the program. This is an important point
because the Institute contrasts itself with behavioral and Lovaasian interventions
(IntensiveBehavioralTreatment)byclaimingthattheOptionsInstituteaccepts
the children rather than trying to modify them or judge some behaviors as better
than others.10 If this were true, then what would be the purpose of charting
behavioral change?
As is discussed in Section Two, the emphasis on objective assessment of
progressisstressedwithintheeldofresearch on treatment outcomes. Without
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the criterion of objectivity, individuals who have a stake in observing positive
results might give biased reports. This is particularly important with parental
reporting, as there is no one with a greater investment in a child than the parents.
For researchers who are examining outcomes of interventions for childhood
disorders, independent assessmentisparticularlysignicant.Itisnotdifcult
to understand that for parents who are desperate for help and respite from the
daily challenges of having a child with autism, merely having a professional
with whom to consult would likely improve their state of mind. The Options
approach seems to emphasize changing the perspective of the parents on their
child’s disorder. They focus on having the parents view the diagnosis as a gift
or special challenge, one that should not be negative, but rather an opportunity.
It is likely that helping parents accept the diagnosis of their child and remove
their own sense of grief has an effect on how the parent views the child. As a
result, it may seem as though the child is improving, merely because the parents
are feeling better. While this may seem to be a helpful experience for parents,
it can also be viewed as inadvertently exploiting their desperation and need for
help.Mostimportantly,theOptionsphilosophy prevents the child from receiving
intervention that is effective in helping to achieve important skills which will
lead to greater independence.
Finally, the Optionswebsite,brochureinformationande-mailcorrespondence
received from the Institute, all make a point of contrasting their approach
with Lovaas’ intensive behavioral treatment protocol, or other behavioral
methodologies. They emphasize the many ways in which their methods are in
opposition to the methods employed by Lovaas and applied behavior analysis,
despite the efcacyindicatedbythelargeamountsofbehavioral research. The
catalogue11 also discourages the use of contradictory interventions, as they can
result in confusion for the child. This may steer parents away from interventions
that have been proven more effective, toward the Son-Rise program that has not
Section One: What Works and What Doesn’t?
147
been proven effective.WhatInddisturbingistheamountofmarketinghype
that accompanies the information regarding Options (particularly the glossy
brochures and video tapes attempting to sell the parent on the method).
Would I try it on my child?
I would not try this method on my child because proponents of Son-Rise offer
no scientic evidence whatsoever that their method works. Although the
philosophy of total acceptance may be instinctively appealing to loving parents
who are desperate to have their child or toddler protected from the cruel outside
world,thereisnoappealtome(asalovingparent)inatreatment that may be
completely ineffective, and indirectly harmful by replacing my child’s chance
at receiving evidence-based treatment.
What kind of study would I like to see the Options
proponents do?
First, I would like to see them acknowledge that this population of children
deserves the kind of best possible outcome from treatments that only controlled
and unbiased research can offer. Next, I would like to see some validation of the
claims that are being made. Controlled outcome data on the progress being made
by children exposed to this intervention is desperately needed. The Institute
should explicitly clarify the methods they are using, so that others can replicate
and evaluate the approach. If they are unable to produce outcome data themselves,
there may be others willing to do so. However, in order to do this, they need to
provide detailed information regarding their procedures.
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Who else recommends for or against Options as
a method for the treatment of autism?
Oneorganizationthatrecommendsagainst the “Son-Rise”method is Quackwatch.
This organization is on the lookout for treatmentswithinsufcientornoscience
behind them and has listed the Options method on its dubious treatments
roster.12
So you’re still on the horns of a dilemma?
Inthenalanalysis,youareinchargeof which treatment you use with your
child. However, be forewarned that there are no peer-reviewed journal articles
reporting data on the effectiveness of Son-Rise/Options.Therefore,ifyouuse
this method on your child, you are simply experimenting. Unfortunately, this
scienticallyunsubstantiated method may be indirectly harmful because it is
wasting your child’s valuable time when he or she could be receiving treatment
thatisbenecialandscienticallysubstantiated.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence to conclude that the
Son-Rise/Optionsmethodisaneffective treatment for children with autism.
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149
Endnotes for Son-Rise/Options Institute
1Kaufman, N., and S.L. Kaufman. undated. The “HEART” of What We Teach. The Son-Rise
ProgramatTheOptionInstitute.[Catalogue],p.7.
2(C. Egan, personal communication,April14,2000).
3Kaufman,N.,andS.L.Kaufman,(seen.1above),p.6.
4C.Egan,(seen.2above).
5Kaufman,N.,andS.L.Kaufman,(seen.1above),p.5.
6Kaufman,N.,andS.L.Kaufman,(seen.1above).
7Kaufman,N.,andS.L.Kaufman,(seen.1above),p.5.
8Kaufman,N.,andS.L.Kaufman,(seen.1above),p.15.
9Kaufman,N.,andS.L.Kaufman,(seen.1above),p.15.
10Kaufman,N.,andS.L.Kaufman,(seen.9above),p.15.
11Kaufman,N.,andS.L.Kaufman,(seen.1above),p.19.
12Kaufman,N.,andS.L.Kaufman,(seen.1above).
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Section One: What Works and What Doesn’t?
151
Child-lead/Parent-facilitated Therapies:
Relationship Development Intervention (RDI)
What is Relationship, Development Intervention
Therapy?
Proponents of Relationship, Development Intervention (RDI) characterize
autism as a disorderinwhichtheafictedpersonsarenotpurportedlyinterested
in connecting emotionally with other people.1 This approach attempts to teach
people with autism to value interpersonal relationships by enjoying shared
experiences, as opposed to interacting simply to attain a preferred object or
goal. The pioneer of this method, Dr. Steven Gutstein, describes the approach
as “teaching emotional intelligence” rather than teaching children to “fake”
conformity by memorizing social scripts.2 The goal is to teach people with autism
to value relationshipsandtherebyincreasetheirqualityoflife.Proponents of
RDI make it clear that this is not a cure for autism, although they suggest that
RDI Therapy will establish neural pathways in the area of the brain that regulates
emotion and motivation.3
What evidence do the practitioners have that this
really works?
Although there are several books authored by Gutstein and Sheely, at this point
there is only one peer-reviewed journal article that presents data on the efcacyof
RDI.4 The article has been accepted for publication by The Journal of Autism and
Developmental Disorders.* The one study was a retrospective between-subject
*The Journal of Developmental and Behavioral Pediatrics has published abstract reporting results of an
RDI study that looks almost identical to the study that is to be published in the Journal of Autism and
Developmental Disorders; however, that study is not presented with the abstract.
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design with seventeen children having autism spectrum disorder in the treatment
group and fourteen children in the control group. Most of the children in the
controlgroupreceivedanunspeciedtypeofbehavioral intervention. The other
two children participated in weekly social skills groups. Gutstein reports that
the group of children who received RDI Therapy scored better on the Autism
Diagnostic ObservationSchedule(ADOS)andweremorelikelytomovefrom
special education to regular education classes than the control group.
Although these results sound promising, there were several serious awsinthe
study. The author points to the following limitations:rst,thechildrenwerea
small sample and highfunctioningwithoutsignicantcognitive impairment.5 In
addition, this was a retrospective study and there was neither random assignment
norsubjectmatching.Asidefromtheauthor’scritique,therearetwootherissues
that indicate the two groups were different from the outset of the study(prior
to the treatment).ThechildrenintheRDIgroupwere:1)oneyearyounger,
and2)hadhigherIQs than the controlgroup(anadditionaltwelvepointson
average).Finally,andarguablythemostsubstantiveawinthestudy,isthat
thereweremorechildrenwithanAsperger’sSyndrome(AS)diagnosis in the
RDI group than in the control group. Unfortunately, the considerable difference
between groups at the outset of the study makes a between-subject comparison
misleading.
In terms of the pre and post scores for the RDIgroupofchildren,itisdifcult
to discern the actual improvement of each child as individual scores for each
child were not presented.*Itisdifcultto establish whether all the children
in the RDIgroupbenetted,orrather,whetherthetwenty-ninechildrenwith
Asperger’sSyndromebenettedtremendously(whichraisedthemean scores
*The pre-mean results are compared to the post-mean results rather than a within-subject analysis
being conducted to compare each child’s pre and post treatment scores.
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for the entire RDIgroupsignicantly).If,indeed,theseresultareaccurate,then
itiscrucialthattheproleofthechildrenwhoimprovebedenedexplicitly;
unfortunately, in the promotional literature, RDI Therapy is claimed to be of
benetforall people ontheautism spectrum.6 Based on the data presented,
however, there is no evidence supporting this claim.
What does the therapy actually look like?
This is a parent-directed therapy. Parents learn the technique throughvideo-
tapes,consultantsandbooks,andthenparentsconductapproximatelynine(9)
hours a week of therapy(according to the study and the promotional literature).
That said, the promotional literature also describes RDI as a lifestyle that is
incorporated into the family.
The program teaches six areas of Relationship Intelligence in which children with
autism spectrum disordersareclaimedtobedecit.Theseareasarediscussedin
some length in Gutsteinetal.(2002)wheretheauthorsmakeacaseforteaching
socialcompetencetoadultswithAsperger’sSyndrome(AS).Theyarguethat
therapy can help develop experience-sharing relationships and, thereby, improve
thequalityoflifeforpeoplewithAS. During RDI Therapy, foundation skills
are taught through simple shared interaction. These skills are then built upon
with adults guiding the child until such time as the child is competent enough
to be moved to peer interaction. Initially, these interactions would take place in
distraction-free environments and gradually move to more typical settings. The
techniqueisimplementedfromtheearliest age through turn taking and social
games(e.g.,peek-a-boo)asaconduittofacilitatetheinteraction. Gutstein has
written several books which describe these interactive cognitive exercises and
activities in some depth.7,8
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What else do I think?
This is a relatively new therapy which mayormaynotbearfruit. I ndthe
conceptofteachingpeopleafictedwithAsperger’sSyndrometoincreasetheir
relationship intelligence compelling. I have concerns with the promotional
website that claims that RDIwillworkforallpeopleafictedwithautism spectrum
disorder, even those who are severely autistic, non-verbal, and cognitively
impaired. The website claims that even non-verbalchildrenwillbenetbecause
RDI “dramatically increases children’s motivation to communicate and to use
meaningful reciprocal language.”9 In addition, RDI is said to “be helpful with
anumberofproblemslike‘stimming’...”10 However, the peer-reviewed article
doesnotpresentsufcientdata which supports these claims. My major concern
is that a parent will implement an RDI programwithaseverelyafictedchild,
hoping to get the results reportedonthewebsite(intheformoftestimonials)
and thereby, not look at best practices for autism treatment and waste that child’s
valuable time.
Would I try it on my child?
Thereisinsufcientdata on RDI for me to experiment with this treatment on
my child; however, as this is a relatively new treatment, I am very interested in
reading and evaluating future studies. Although I am very skeptical about RDI
Therapy being effective on young children with autism, or children with autism
who are pre-verbal, I am somewhat more hopeful that RDI will be effective
for persons with Asperger’s Syndrome and, perhaps, people with very high
functioning autism.However,until I see some rm evidence to this effect, I
would not experiment with my child.
Section One: What Works and What Doesn’t?
155
What kind of study would I like to see proponents of
RDI do?
I would like to rst see RDI Therapy tested on adolescents and adults with
Asperger’s Syndome prior to tests conducted on individuals with autism. The
study design should be a double-blind(whereneithertheexperimenter,thechild
orhisparentsknowwhoisreceivingthetreatment),between-subject design using
random assignment to conditions. Although the RDI researchers do not like IQ
testing as a measure for progress, it is still important that they incorporate several
of these measures into their studies.Specically,cognitive measures need to be
used in addition to the AutismDiagnosticObservationSchedule,ADOS(which
measuresplay,socialinteraction, and communication)to offer apreliminary
evaluation of the RDI program.
Who else recommends for or against RDI Therapy as
a method for the treatment of autism?
RDI has only recently been introduced into the world of autism treatment as a
new alternative. Therefore, there has not been much written that either supports
or refutes the method.
So you’re still on the horns of a dilemma?
Sincethereisinsufcientdata supporting this method, it is important to understand
that using this method on a child essentially amounts to experimentation. That
said, as long as effective treatment is being provided to the child and RDI does
not interfere with the provision of the primary treatment, the biggest gamble is
spending money on a treatment that may not be effective. As the RDI is taught
to parents and then administered by the parents to the child, there is a limit to
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the cost; however, it is important to take into account the energy drain on the
parent for a treatment that is not yet shown to be effective.
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence that RDI is
an effective treatment for decreasing the symptoms associated with autism.
Section One: What Works and What Doesn’t?
157
Endnotes RDI Therapy
1Gutstein, S. E. 2004. “The Effectiveness of Relationship Development Intervention in
Remediating Core DecitsofAutism-Spectrum Children. Journal of Developmental & Behavioral
Pediatrics, Vol. 25, No. 5, p. 375.
2Gutstein,S.E.,(seen.1above),p.30.
3Gutstein,S.E.,(seen.1above),p.30.
4Gutstein, S., and R. Sheely. 2002. Relationship Development Intervention Activities for Young
Children. London: Jessica Kingsley Publications.
5Gutstein,S.,andR.Sheely,(seen.4above),p.9.
6Gustein, S., and R. Sheely. Introductory Guide for Parents, Going to the Heart of Autism,
Asperger’s Syndrome & Pervasive Development Disorder, www.rdiconnect.com(accessedOct.
25,2005).
7Gutstein, S., and R. Sheely. 2002a. Relationship Development Intervention with Young Children,
Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD and NLD.
London: Jessica Kingsley Publishers.
8Gutstein, S.E., and R.K. Sheely. 2002b. Relationship Development Intervention with Older
Children, Adolescents and Adults: Social and Emotional Development Activities for Asperger
Syndrome, Autism, PDD and NLD. London: Jessica Kingsley Publishers.
9Gutstein,S.,andR.Sheely,(seen.6above).
10Gutstein,S.,andR.Sheely,(seen.6above).
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Child-lead/Parent-facilitated Therapies: The
Learning to Speak Program
What is the Learning to Speak Program?
Learning to Speak is a program designed for parents to teach their language-
delayed children to speak. The method was designed for children considered
intellectually normal with speech delays not associated with mental retardation.1
It is important to note that this program was not designed for children with
autismspecically,andisrecommendedonlyforchildrenwithautism who are
not intellectually impaired. The LearningtoSpeakmanual(1984)wasdesigned
for individuals who have a minimum mental age of 12 months. Parents are
advised that they may need professional help if their children’s delays exceed 10
months.2 AccordingtoZelazo(1984),theLearning to Speak Program is based
on the developmental foundations of language and some principles from the
eldof behaviorism.3 The curriculum is progressive:rstsoundsandwords
aretaught;then two-word combinationsareintroduced; and nally,complex
sentences are taught. In order to accomplish these goals, the manual suggests
using the techniquesofnon-verbal imitation, verbal imitation, contingent rewards
and prompts.
The program begins with assessment of the level of language of each child. Formal
language instruction occurs at the level on which the child is assessed. Skills
are then generalized to other settings. Parents are urged to use contingencies
(rewards),eventsoutsideofthesessions(suchasbathtubtime,gettingdressed),
andprops(suchastoysorthree-dimensional objects)toencouragelanguage. The
ratioisonechildperteacher(whoisgenerallytheparent)andtheinstruction
style is a combination of child-led and adult-led.
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The Learning to Speak manual also offers suggestions on how to overcome non-
compliant or resistant behavior in order to enable learning to occur. Resistant
behaviors are addressed by removing all rewards for those behaviors, while
simultaneously rewarding alternative, more desirable behaviors.Thetwospecic
behavior reduction strategies mentioned in the manual are extinction(ignoringor
removing attention from a behavior),andtime-out(removingthechildfromthe
stimulatingactivityorbyremovingthestimulatingactivityfromthechild).
What evidence do the practitioners have that this
really works?
There is currently no evidence that this is an effective intervention for individuals
with autism. After doing a database search (psychinfo, medline, eric, and
CochraneCollection)ontheLearning to Speak program and research conducted
by Zelazo (the developerofthe method), wefoundover ten journalarticles.
However, most of the articles were theoretical in nature. After excluding
the descriptive articles devoid of data testing the method, we netted only one
peer-reviewed study. Although this one peer-reviewed article does provide a
description of data,4 according to Zelazo5 the data described has not been peer-
reviewed. Despite the lack of peer-review for the data, it is important to mention
that Zelazo did report improvement among children with autism(althoughthe
forty-four children in the study proportedly were diagnosed with “developmental
delaysofunknownetiology[cause]”6andnotautism).Zelazoreports statistically
signicantimprovement on many verbal measures and compliance behaviors,
which is not surprising considering that part of his method borrows from basic
behavioral principles.
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What does the therapy actually look like?
The recommended intensity of this programistwelveminutesperday,vedays
per week until the various levels have been completed. To provide the child with
the feeling of success, the session begins and ends each day with the practice
of mastered material; the middle of the session focuses on new material. When
the child provides a correct response, he or she receives both tangible rewards
(e.g.,food)andsocial rewards(e.g.,verbalpraise).Toteachthechildthecorrect
response, the adult uses imitation and shapes verbalapproximations(e.g.,the
sound“cu”willbeshapedintotheword“cup”).Earlystagesoftherapy include
both nonverbal and verbal imitation where the adult shapes the child’s sounds into
singlewords.Oncesixtysinglewordshavebeenacquired,thesewordsarerst
paired into two word sentences and then eventually into complex sentences.
What else do I think?
There is currently no peer-reviewed research to support this intervention for
children with autism. It is also not clear that the authors actually intended
this intervention to be used for individuals with autism. It appears as though
the method was designed for a different group of children and then applied to
children with autism, despite the lack of data for the method on this population
of children. In addition, the Zelazo Method uses a very low level of treatment
intensity(onlytwelveminutesperday).Basedonwhatweknowaboutautism
andthedifcultnatureofthecondition,particularlywhenitcomestolanguage,
twelve minutes daily would appear to be far too low to meet the serious needs of
theindividualafictedwithautism. Presumably, this is why Zelazoetal.(1984),
recommend a minimum mental age of twelve months and professional guidance
for individuals with delays greater than ten months. These recommendations in
effect work to exclude most untreated individuals with autism, whose delays
would generally exceed those mentioned by the authors. This would also include
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children without mental retardation who receive low scores on IQ tests due to
one of the hallmarks of autism amongst young children, which is noncompliance.
In other words, if the child does not cooperate during the testing, his score will be
deceptively low and he will be excluded from the population Zelazo recommends
for the therapy. Additionally, authors do not make it clear how to structure the
learning situation. For compliant children, it is recommended that they sit in a
chair; however, for noncompliant children, parents are instructed to follow the
child’s lead and accept unstructured learning situations. The authors do not
address how the noncompliant child will learn from this method.
Otherareasofpotential confusion for parents using the Zelazo Method regard
problematic behavior and prompting. The authors recommend the use of prompts
to facilitate success for their children; however, they do not discuss the systematic
fading of prompts towards independence. In addition, the behavioral strategies
of extinction and time-out are mentioned, but parents are not told how to select
a strategy based on the function of the behavior for the child. If a behavior does
not serve the purpose of gaining attention for the child, then ignoring the behavior
will not likely be successful. Moreover, if a child is acting out as a form of escape
from a situation or task, the use of time-out will actually reward the child for
misbehaving.Inshort,theentireeldofbehaviorism is much more complex
than the way it is presented in the Learning to Speak program.
The Learning to Speak program manual discusses many effective learning
strategies (e.g., shaping, prompting, behavioral intervention, compliance
training and the use of imitation to facilitate languageacquisition);however,
there is nowhere near enough information provided in order for these strategies
to be applied effectively. It is unrealistic to expect parents to implement this
program based on the limited information in the manual. In addition, the manual
oversimplies language development and teaching for individuals who have
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particular delays in these areas. Finally, it is interesting that in this method, it
is only parents with minimal training who are expected to be competent speech
therapists for their children. This is the perfect type of therapy that governments
and health insurance companies can endorse because it costs them very little
money, as parents are free labor. In fact, proponents of this method consider
parents ideal therapists because they are with their children much during the
infant and toddler years. Zelazo states in his 1997 article, “These factors, along
with a more exclusive reliance on parents as therapists, render Learning to Speak
anextremelyefcientintervention programinbothtimeandnancialcostto
thetaxpayer,althoughitisintensiveforparentsinitially”7 (emphasisadded).
It is my view that researchers doing pure research should not be concerned
with government policy or taxpayer money; their main priority should be
researchthatmovestheautismtreatmenteldforwardintermsofefcacyand
successful outcomes for the children. Another troubling part of this research
is the funding source. According to Zelazo,theOfceofSpecial Education
looked at preliminary data prior to funding this research project to the tune of
$750,000.8* That kind of interference in scienceisaredaginmycase.
Would I try it on my child?
I would not try the Learning to Speak Method on my child simply because there
is no independent data which provides evidence for the efcacyofthismethod
for autism. If the method were scientically substantiated (andnotdirectly
supportedbytheOfceofSpecialEducation),requiringonlytwelveminutesa
daytomakeasignicantdifferenceinthelifeofachildwithautism, it might be
worth trying. However, the concept that such a low level of treatment intensity,
*Althoughitisnotclearfromthe article,itappearsasiftheOfceof SpecialEducationthat
fundedthis researchisaU.S. agency.Theirresearchwas fundedfromtheOfce ofSpecial
Education(No.G00760379)andtheTufts-NewEnglandMedicalCenterHospital.
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andavaguelydenedmethod would be able to generate positive outcomes with
autistic children who have such serious developmental and language disorders,
seemsfartoogoodtobetrue,andconsequently,difculttobelievewithoutmore
serious evidence.
What kind of study would I like to see Zelazo and
Colleagues do?
The language programdescribedinthismanualrequiresthesameevaluation as
any treatment option. There needs to be controlled research evaluating the effects
of this program. These researchers need to use standardized, widely accepted
diagnostic protocolstodeneallthechildreninhisstudy and the method would
require implementation by highly skilled practitioners for the same amount
oftime daily(ratherthanusingparents astherapists),inordertoincreasethe
consistency and skill in the delivery of the therapy. The study would have to
randomly assign children to experimental and control groups or at least match
the children in each condition with the control group receiving generic speech
and language therapy for the same amount of time per day. Most important, all
direct ties to government special needs stakeholders must be severed prior to
embarking on any research which tests the efcacyofthistreatmentmethod.
Who else recommends for or against the Learning to
Speak program?
This is a rather obscure treatment method which targets language therapy.
Consequently,thereislittlewrittenbyothersintheautismeldregarding this
treatmentforchildrenwithautism.Inaddition,thereisnodebateintheeld
about the efcacyofthistreatment, partially because it has been developed in
Canada and is not widely supported by state governments in the United States.
As governments come to rely on this method more for children with autism, there
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165
may be a debate opened up about the lack of evidence regarding the efcacyof
the Learning to Speak program. However, up to this point, we know of only
one government that has attempted to provide this training to parents of children
with autism– the Government of Newfoundland/Labrador, Canada.
What’s the bottom line?
There is no evidence suggesting that this is an effective intervention for individuals
with autism. In fact, there is no evidence to suggest that this intervention was
even designed for use on individuals with autism.
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Endnotes for the Learning to Speak Program
1 Zelazo, P. R. 1984. Learning to Speak: A Manual for Parents. Hillsdale, NJ: Lawrence
Erlbaum Associates, Inc.
2 Zelazo,P.R.,(seen.1above).
3 Zelazo, P. R. 1997. “Infant-Toddler Information Processing Treatment of Children with
Pervasive Developmental Disorder and Autism: Part II. Infants and Young Children, Vol. 10,
No. 2, p. 4.
4 Zelazo,P.R.,(seen.3above).
5 Zelazo,P.R.,(seen.3above),p.11.
6 Zelazo,P.R.,(seen.3above),p.7.
7 Zelazo,P.R.,(seen.3above),p.6.
8 Zelazo,P.R.,(seen.3above),p.8.
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p Diet/Nutrition Therapy (Gluten and Casein-free Diet)
p Chelation Therapy
p Intravenous Immunoglobulin Therapy
p Secretin
p Vitamin B6 and Magnesium
Biomedical Therapies Section 1.4
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Section One: What Works and What Doesn’t?
169
Biomedical Therapies: Diet/Nutrition Therapy
What is Diet/Nutrition Therapy?
The use of diet or nutrition therapies to treat autism takes many forms, each with
auniqueexplanation about how certain types of foods are negatively purported
to affect a child with autism. While all of the interventions have been grouped
in the same section, an explanation of each of the underlying theories will be
provided separately.
Gluten and Casein-free Diets
Therstandmostpopulardiet intervention involves the elimination or reduction
of gluten or casein, or both in the diet of an autistic person. The belief in this
dietary intervention is based primarily on the age at which the disorder is
discovered. Researchers hypothesize that there is a relationship between the
onset of autismandsignicantdietary changes, believed to involve food derived
peptides(which areproteins).1 As a result, researchers in these studies have
categorized individuals with autism into three subgroups; types A, B1 and B2.
Type A is comprised of children who developed autismlate(lateonsetinfantile
autism or childhood onset PDD).Thisgroupisgivenagluten-freeandcasein-
(milkproducts)reduceddiet, due to the retrospective observation that when their
gluten intake increased, the autismappearedtobecaused(for90percentofthese
children).2 The next group of children is categorized as Type B1 because their
autism was observed as early onset with later regression. They were given gluten
and casein-free diets, as were those children categorized as Type B2, early onset
infantile autism, without worsening symptoms. Researchersinthiseldbelieve
that the early onset was due to the fact that only milk was being consumed at
this stage and must therefore be the cause of the onset of autism.3
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Candida Diet
Another offshoot of Nutrition therapy is the Candida diet, which is thought to
be an effective treatment for autism by its proponents. It is hypothesized that
Candida albicans (yeast) canbecomeoverabundant and deprivethe body of
nutrition by interfering with digestion.4 In turn, this is said to interfere with
neurotransmission in the brain. Some believe that this can lead to several
disabilities, of which autism is included.
Ketogenic Diet
Another diet that is claimed to originate from the treatment of epilepsy and
cancer is the Ketogenic Diet.5 Proponents of the diet, as it applies to autism,
hypothesize that the Ketogenic Diet helps metabolize glucose in children with
autism and, thereby, lessens the symptoms of autism.
Nutritional Therapy
Another popular treatment for autism is the use of vitamins and minerals to
treat what are considered, by proponents, to be nutritional imbalances. These
researchers claim that by balancing the body’s chemistry, the symptoms of people
with autism will decrease.6 Proponents test children for over eighty nutritional
deciencies (examples of the chemicals that these researchers claim to have
found to be “out of balance” are copper, zinc, lead, cadmium and sodium).
Then they give the children additives to purportedly create balance in the body
chemistry.*
*Themost popular deciencydiets are those that recommend Vitamin B6 and magnesium. Due to the
popularity of Vitamin Therapy, a separate section has been devoted to the analysis of that treatment.
Section One: What Works and What Doesn’t?
171
What evidence do the practitioners have that this
really works?
Our database searches netted dozens of articles discussing various types of
nutritional diet therapies intended for the treatment of autism.Oncewerejected
the reviews, commentaries and testimonials due to their lack of controlled data,
we were left with very few peer-reviewed journal articles that supported the
efcacyofDiet/NutritionTherapy.
Gluten and Casein-free Diets
Our search netted eight articles* which collected behavioral data on the
effectiveness of Gluten and Casein-free Diets for autism. Once we excluded
a survey article12 and an article documenting referral of nutritional therapies,13
we were left with six articles on this approach to autism intervention.1,2,14,15,16,17
This researchisafliatedwithtwogroups,oneattheDepartmentofPediatric
ResearchattheUniversityofOslo,Norway(theReicheltKnivsberggroup)and
the other at the Department of Paediatrics of the University of Rome.14
Specically, only one of these studies has a control group,17 which leaves
opportunities for many confounding variables(otheruncontrolledinuences)to
explain results or changes. An additional problem with a lack of control group
when the studies are conducted over months or years is that there is no control
over maturation effects (improvements that may naturally occur as children
age).Thegains that were made due to maturationalone(orthefactthatmany
of these children were in specialized educational environments and perhaps
improving)werenottakenintoaccountinthesestudies;yetthesegainsmayhave
*Therewereveadditionalarticles found in our Gluten and Casein search; however, these were excluded
because they simply measured increased peptide levels without testing the diet and without using any
traditional measures for autism.7,8,9,10,11
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been responsible for the observed improvement.(PleaseseeSectionTwofor
an explanation on the weaknesses of within-subjectdesigns).TheKnivsberg
etal.(2002)study does have a control group, which is a major improvement
overtheothervestudies on Gluten and Casein-free Diets.
An additional weakness of this group of studies is that the measures of the
dependent variables of autism are awed.The reported results on behavior
change were done by parents in several of the studies,1,2,16(Fora discussion
regarding the dangers of relying on parental reporting, please see Section
Two).In addition, in theLucarellie etal.(1995)study,itwas not specied
who administered the measures. Furthermore, all these researchers use tests
thathave questionable validity when it comes to autism. The Diagnosis of
Psychotic BehaviorinChildren(DIPAB)wasdevelopedin1975forpsychosis,
not autism.18Ourknowledgeofautismhasincreasedsignicantlyinthelast
thirty years and we are now able to differentiate between autism and psychosis.
With that increased knowledge, there are also independently validated measures
that should have been used instead. Additional outdated and non-autismspecic
measures that have been used in this research is a non-verbal cognitive test
developedforty-sevenyearsago(theC-Raventest–Raven,1958),theIllinois
Test of Psycholinguistic Abilities developed thirty-seven years ago,19 and a
Norwegian Autism ObservationScaledesignedtwenty-fouryearsago.20 An
additionalmeasure ofquestionablevalidityistheBehavior Evaluation Scale
(BSE)thathasnotbeenindependentlyvalidatedusingalreadyagreed upon,
validated autism scales.
Yet another problem with all the studies is that only one of them16 was single
blind. None of the other studieshadsufcientcontrols against experimenter bias.
The 2002 studyconductedbyKnivsbergetal.wasasignicantimprovement on
all the studies which have preceded this study; however, the 2002 study suffers
Section One: What Works and What Doesn’t?
173
from several aws.Althoughinformationonautistictraitswascollected(often
with outmoded testing)andindividualreports were written on each child’s level
of functioning, there was no objective behavioralmeasure(e.g.amountofself-
stimulatory behaviorper day perchild)thatcould be comparedpre-andpost
treatment. In addition, parents were heavily involved in the study and knew to
which experimental group their child was assigned. The project leader, however,
did not. In short, although this study was the best published so far for this method
of autism intervention, the awsinthestudy make it premature to accept it as
evidence that supports the effectiveness of the Gluten and Casein-free Diet.
Candida Diet
In terms of evidence for the efcacyoftheCandidaDiet, we only found one study4
and that study only presents case histories which are completely uncontrolled.
In addition, in the two case studies described by Adams and Conn (1997),
both of the children were involved in educational treatment concurrently. This
furtherconfuses(confounds)theresults of this retrospective study. Moreover,
parental reporting was relied upon heavily in these two case histories. Finally,
improvement was not objectively measured.
Nutritional Deciency Diet
We found only one peer-reviewed journal article on Nutrition Therapy(excluding
all the articles written about Vitamin B6 and Magnesium). The researcher,
Isaacson(1996),concludesthataftersupplementingthechildrenwithavariety
ofvitaminandmineralsupplements,therewas“signicantgeneralimprovement
in all symptoms.”21 There are several methodological problems with this study.
First,thechemicalimbalancesthatwereidentiedweredeterminedusinghair
analysis, which can be a controversial procedure, particularly when done by a
commercial laboratory.22 Second, the relationship between autism and chemical
imbalance has not yet been established. Finally, the conclusion that children
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improved is based on one follow-up visit in a retrospective study. There are no
criteria laid out for how the improvement was measured, and the improvement
is examined retrospectively. This opens the results up to recall bias, which in
this case is doubly problematic because the recall is being made by parents who
are not unbiased even in the best of scenarios.
Ketogenic Diet
We netted only one peer-reviewed journal article on the Ketogenic Diet.
Evangeliou et al. (2003) did a within-subject design which included thirty
children with autism. A number of children stopped the diet prior to completion
of the study(40percent)whichlefteighteenoutoftheoriginalthirtychildren
remaining in the study. The researchers found that two of the children
signicantlyimproved,eightpatientsimprovedlesssignicantlyandtherewas
minor improvementforanadditionaleightpatients(theseimprovements were
measured with the Childhood Autism Rating Scale, CARS).Theresearchers
reportsignicant improvementwith two children(a twelve pointchange in
the CARS)totheextentthatthesechildrenwereabletoattendamainstream
school.(Yet,itwasnotspeciediftherewasanin-classaideorifthechildren
werefunctioninginclassindependently).
Although this study reported promising results and did have some impressive
controls(e.g.,thechildrenwereadministeredthediet in a hospital throughout
the study, and the psychiatrist who evaluated the children did not know which
children were in the studyandwhichwerenot),thereareseverallimitations
to the study. The CARS is one screening device for autism; however, more
psychometric testing needs to be done with those children to be able to measure
meaningful change. In addition, observational data which measures the relative
decrease of stereotypy and other self-stimulatory behaviors characteristic to
children with autism must be collected. Furthermore, we must consider that
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175
those who worked in the hospital were not blind to the treatment. They knew
which children were on the dietandcouldhaveinuencedtheoutcome of the
study (see Section Two on self-fullling prophecy). Another critique of the
study is that 40 percent of the children in the study withdrew prior to study
completion. Although we still have pre-and post measurements of those children
who remained, the large attrition rate does not inspire condence,particularly
whentheauthorsclaimthatallchildrenbenettedfromthestudy.
An additional unexplained nding is that the children’s improvement was
maintained long after they discontinued the diet. This could be due to a long-
term effect of the diet; however, an alternate explanation is that there is a
confounding variable completely unrelated to the diet, which is responsible for
the improvement. That said, these ndingsaresufcientlyrobustwithasmall
subset of the children in the study that they invite replication by other researchers
with no relationship to this research group.
What does the therapy actually look like?
Gluten/Casein-free Diet
The gluten/casein-free diet attempts to eliminate all products which contain gluten
(suchasmostbreads,cakesandothercarbohydrateswhichcontainwheat)andall
productswhichcontaincasein(suchasmilkandcheese).Thediet is generally
carriedoutforayearandmonitored.Onceparentsareconvincedthatthediet
is working, they end up keeping the child on the diet permanently. Parents
generally control the diet in consultation with a nutritionist and, sometimes, a
medical doctor.
The Candida Diet
The Candida diet follows a complex seven stage procedure developed by
MacFarland(1992).The body is saidto be detoxied by eliminating a large
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varietyoffoods(suchasmilk products, corn products, sugars) from thediet.
Gradually, foods are then reintroduced. It is unclear from the article as to how
reintroducing certain foods balances the yeast; however, the concept is that as a
result of the therapy, the body’s yeast level is supposed to come into balance.
The Ketogenic Diet
The Ketogenic Diet was adapted for children to make sure that thirty percent of
thechild’sdailyintakecomesfrommedium-chaintriglycerideoil(foundinfoods
suchascoconutoil).Therest of the child’s food must be balanced as follows: 30
percent cream, 11 percent fat, 19 percent carbohydrates and 10 percent protein.5
Thismodieddiet, the John Radcliffe diet, was adapted due to its purported
ease of management. The researchers do not go into detail about how long the
children should remain on the diet; however, children in the study were on the
diet for four weeks and then diet-free for two weeks, over a six month period.
What else do I think?
Many parents are attracted to diet/nutrition interventions because it is a non-
medicinal approach that appears to be relatively easy to follow. People often
gravitate to this type of intervention due to the observation that their child with
autism either has strong food preferences, food aversions, or gastrointestinal
discomfort or distress. I suspect that some of the anecdotal results may be a
product of a small subset of children who may have allergies which make them
miserable.Oncetheyfeelbetter,perhapssomeoftheirbehaviors improve simply
because they are not suffering. This nding,however,hasnoeffect on autism
intrinsically; rather, it may be that children with autism are often under-served
by mainstream medicine because they don’t have the verbal ability to complain
about feeling physical discomfort whether due to allergy or illness.
Thequestion about the relationship between autism and nutrition remains. We
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177
simply do not know whether a relationship exists. What we do know is that it is
very important to take the uncontrolled, anecdotal reporting of this relationship
skeptically.Onlythetrueexperimental design can begin to shed light on whether
or not there is a relationship between diet/nutrition and autism. Unfortunately,
to date none of the research conducted utilizes a true experimental design with
adequatecontrols and an accepted measurement of the dependent variable, autism.
To illustrate this lack of accepted measure for autism, whether we are measuring
chemicals in hair analysis or peptides*inurine(whichareheavilyusedinmany
of these studies),thesetests do not measure the degree of autism.Onlywidely
accepted behavioral and psychometric measures that have been validated to test
autism should be used to determine the degree of autism before the diet and the
degree of autism during and after the nutritional intervention.
Would I try it on my child?
I would not try Diet/Nutrition Therapy on my child until some better data is
produced to convince me that there is any truth to the idea that diet can ameliorate
the symptoms of autism. That said, if I were worried that my child were allergic
to any food source, I would go to a mainstream allergist and have her tested. I
would not expect the elimination of an allergin to improve her autism; rather, I’d
expecttheeliminationoftheallergintoeliminatetheallergicreaction(which
has not been shown to have any relationship to autism).
*Thisareaisconcernedwithaparticularclassofopioid peptides(whichareatypeofamino
acid). Theopioidpeptidesthat are associatedwithmilk– casomorphin, andgluten–gluten
exorphin, are hypothesized to be the culprits in reference to autism.
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What kind of study would I like to see proponents of
Nutrition Therapies do?
At this point, none of the nutrition therapies have established a relationship
between nutrition and autism. Prior to conducting any research on treatment, the
gluten/casein-free diet researchersmustrstrmlyestablish a causal relationship
between peptide levels and autism. Specically, they needtodemonstrate a
direct relationshipbetweentheexcessofopioidpeptides(aminoacidsthathave
theeffectsimilartoopiatesinthebrain)andbehaviors characteristic of autism.
Either the opioid peptide – autism relationship needs to be established, or the
researchers should only use behavior scales to measure the degree of autism
prior to and after the diet.
If and when researchers can demonstrate these relationships, then they need
to study whether there is a particular subset of people with autism who may
hypotheticallybenetfromthistypeofintervention. In other words, the research
questionshouldbewhetherthereisaparticularsubsetoftheautisticpopulation
of children who have components of their diet which are causing their autistic
characteristics? If so, then, and only then, is there justicationforinvestigation
into treatment. Well-controlled research into the efcacyofdiet intervention
for individuals with autism should not use measures that are biomedical; rather,
measures used for autism must be standard behavioral measures because autism
isabehavioraldiagnosis.Untilsuchtimeaswehavearmbiomedicalindicator
which can measure degree of autism, an indicator which, at this point, still eludes
us, nutritional studies cannot reasonably make any claims of autism improvement
based on biomedical measures.
There are two studiesthatIwouldliketoseeindependentlyreplicated.Therst
study is the Knivsberg et al. 2002 study. They need to use updated, internationally
accepted measures for autism and a double-blind design where children are either
Section One: What Works and What Doesn’t?
179
being fed the Gluten/Casein-free diet, or another diet that is accepted as healthy.
As mentioned before, double-blind means that neither the researchers nor the
parentscan know whichchildrenare assignedtowhich group (experimental
orcontrol).Thesecondstudy that needs to be independently replicated is the
Ketogenic Diet as the results of a subset of those children who remained in the
study appear robust. First, proponents of the Ketogenic Diet need to determine
the way in which Ketone bodies* affect the brain,andmorespecically,autism,
which is a disorder of the brain. Without an independent replication either
supporting or refuting these ndings,theKetogenicDiet could turn into the next
fad where children with autism are subjected to yet another treatment without
sufcientevidence. In addition, proponents of the Candida Theoryneedtorst
rmlyestablish the relationship between an overgrowth of yeast and autism.
Who else recommends against Diet /Nutrition Therapy
as a method for the treatment of autism?
There is a long line of organizations recommending against Diet/Nutrition
Therapies as a treatment for autism. According to the New York State Department
of Health Report on Best Practices for Autism, “The use of special diets that
eliminate milk-products, gluten products,orotherspecicfoodsfromthediet
is not recommended for the treatment of autism in children.”23 In addition,
Quackwatch (a health-related watchdog organization) considers Dietary
Supplements a “Doubtful or Discredited Treatment.”24 Another organization that
considers the science behind gluten and casein-free diets as methodologically
weak is the Association for Science in Autism Treatment (ASAT).25 The
American Academy of Child and Adolescent Psychiatry in their practice
*Ketone bodies are the three chemicals that are a by-product of the process by which fat is broken
down in the body.
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180
parameters of assessment and treatment also recommend against these diets.26 In
a technical report on autism, the American Academy of Pediatrics states: “The
presence of allergies or food intolerance in children often stimulates families to
explore unconventional diets... Another recent investigation failed to document
a higher prevalence of hypersensitivity to common food allergens in children
with ASD, compared with controls.”27
So you’re still on the horns of a dilemma?
It might interest the reader to know that these theories have been around for
manyyears.Therstaccountssuggesting that dietcouldinuenceautism date
back to 1981.28Twenty-veyearshavepassedandthereisstillnoindependent
scienticsupportforthevarious theories on diet and nutrition. Therefore, it might
be a good idea to wait until this research is done and published in peer-reviewed
journals; otherwise, you are essentially engaging in pure experimentation with
your child.
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence that Diet/
Nutrition Therapies of any kind are an effective treatment for improving the
symptoms associated with autism.
Section One: What Works and What Doesn’t?
181
Endnotes for Diet /Nutrition Therapies
1Reichelt, K.L., H. Scott, A.M. Knivsberg, F. Nyberg, and V. Brandtl. 1990. “Childhood Autism:
A Group of Hyperpeptidergic Disorders. Possible Etiology and Tentative Treatment.” Beta-
Casomorphins and Related Peptides. Uppsala: Fyrris Tryck, pp. 163-173.
2Reichelt, K.L., A.M. Knivsberg, G. Lind, and M. Nodland. 1991. “Probable Etiology and
Possible Treatment of Childhood Autism.”Brain Dysfunction, Vol. 4, No. 6, pp. 308-319.
3Reichelt,K.L.,H.Scott,A.M.Knivsberg,F.Nyberg,andV.Brandtl,(seen.1above).
4Adams, L., S. Conn. 1997. “Nutrition and Its Relationship to Autism.” Focus on Autism and
other Developmental Disabilities, Vol. 12, No. 1, pp. 3-58.
5Evangeliou, A., J. Vlachonikolis, H. Mihailidou, M. Spilioti, A. Skarpalezou, N. Makaronas, et
al. 2003. “Application of a Ketogenic Diet in Children With Autistic Behavior: Pilot Study.”
Journal of Child Neurology, Vol. 18, No. 2, pp. 113-118.
6Isaacson, R.H., M. M. Moran, A. Hall, B.J. Harman, M.S.W. Prehosovich and M. A. Prehosovich.
1996. “Autism: A Retrospective OutcomeStudy of Nutrient Therapy.”Journal of Applied
Nutrition, Vol. 48, No. 4, pp. 110-118.
7Reichelt, K.L., H.K. Hamberfer, and G. Saelid. 1981. “Biologically Active Peptide
Containing Fractions in Schizophrenia and Childhood Autism.” Advances in Biochemical
Psychopharmacology, Vol. 28, pp. 627-643.
8Israngkun, P.P., H.A.L. Newman, S.T. Patel, V.A. Duruibe, and A. Abuissa. 1986. “Potential
Biochemical Markes for Infantile Autism.”Neurochemical Pathology, Vol. 5, pp. 51-70.
9Reichelt, K.L., G. Saelid, T. Lindback, et al. 1986. “Childhood Autism: A Complex Disorder.”
Biological Psychiatry, Vol. 21, pp. 1279-1290.
10Shattock, P., A. Kennedy, R. Rosell, and T. Berney. 1990. “Role of Neuropeptides in Autism
and Their Relationships With Classical Neurotransmitters.” Brain Dysfunction, Vol. 3, pp.
328-345.
11Reichelt, K.L., A.M. Knivsberg, M. Nodland, and G. Lind. 1994. “Nature and Consequences
ofHyperpeptiduriaandBovineCasomorphinsFoundinAutisticSyndromes.” Developmental
Brain Dysfunction, Vol. 7, pp. 71-85.
12Cornish, E. 2002. “Gluten and Casein Free Diets in Autism: A Study of the Effects on Food
ChoiceandNutrition.”Journal of Human Nutritional Dietetics. Vol. 15, No. 4, pp. 261-269.
13Bowers, L. 2002. “An Audit of Referrals of Children With Autistic Spectrum Disorder to the
DieteticService.”Journal of Human Nutritional Dietetics, Vol. 15, pp. 141-144.
14Lucarelli,S.,T.Frediani,A.M.Zingoni,F.Ferruzzi,O.Giardini, F. Quintieri, et al. 1995. “Food
Allergy and Infantile Autism.”Panminerva-Medica, Vol. 37, No. 3, pp. 137-141.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
182
15Knivsberg, A.M., K. Wiig, G. Lind, M. Nodland, et al. 1990. “Dietary Intervention in Autistic
Syndromes.” Brain Dysfunction, Vol. 3, Nos. 5-6, pp. 315-327.
16Knivsberg, A.M., K.L. Reichelt, M. Nodland, and T. Hoien. 1995. “Autistic Syndromes and
Diet : A Follow-up Study.” Scandinavian Journal of Educational Research, Vol. 39, No. 3,
pp. 223-236.
17Knivsberg, A.M., K.L. Reichelt, T. Hoien and M. Nodland. “A Randomised, Controlled Study
of Dietary InterventioninAutisticSyndromes.”2002.Nutritional Neuroscience, Vol. 5, No. 4,
pp. 251-261.
18Knivsberg,A.M.,K.L.Reichelt,M.Nodland,andT.Hoien,(seen.16above),p.225.
19Kirk, S.A., J.J. McCarthy, and W.D. Kirk. 1961. Illinois test of psycholinguistic abilities (ITPA).
Urbana: University of Illinois Press.
20Tafjord, M. 1982. Obsevasjon av fornutsetnninger for lek og aktivitet, Observasjonsskjema.
[Observation of prerequisites for play and activity: Observationschedule], Oslo: Statens
Spesiallaererhogskole.
21Isaacson,R.H.,etal.,(seen.6above),p.112.
22Barrett, S. 1985.“Commercial Hair Analysis, ScienceorScam?”Journal of the American
Medical Association, Vol. 254, No. 8, pp. 1041-1045.
23Guralnick, M. Ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany(NY):New York State Department of Health, p. IV-104.
24Quackwatch, http://www.autism-watch.org,(accessedApr.18,2005).
25Association for Science in Autism Treatment(ASAT),http://www.asatonline.org/resources/
library/informed_choice.html,(accessedMay10,2005).
26The American Academy of Child and Adolescent Psychiatry in Their Practice, http://www.
aacap.org/AACAPsearch/SearchResults.cfm,(accessedFeb.21,2006).
27Committee on Children with Disabilities. Technical Report. 2001. “The Pediatrician’s Role
in the Diagnosis and Management of Autistic Spectrum Disorderin Children.” Pediatrics,
Vol. 107, No. 5, p. e85, www.aacap.org/clinical/parameters/summaries/autism.htm,(accessed
Feb.21,2006).
Section One: What Works and What Doesn’t?
183
Biomedical Therapies: Chelation Therapy
What is Chelation Therapy?
Chelation Therapy is the process by which harmful metal toxins are extracted
fromthebody.Chelatingagents(twotypesofaminoacids)areinjectedintothe
child to bind to these metal ions and remove them from the body. This therapy
is used on individuals with autism, based on the belief that autistic behaviors are
a result of chronic metal toxicity in the child. It is thought that if the chelating
agents can remove the offending toxins from the body, the symptoms of autism
will improve. It is further hypothesized that the metals are introduced into the body
from the environment through air, water, ingested orally or absorbed through the
hands.Inaddition,thetoxinofthermerisol(giventhroughchildhoodvaccinations
untilrecently)hasbeenaddedtothislistofcontributingtoxins.
What evidence do the practitioners have that this
really works?
Currently, there is no scientic data published in peer-reviewed journals to
suggest that Chelation Therapy is an effective treatment for individuals with
autism.Ourdatabase searches found no articles with outcome data regarding the
effectiveness of chelation in improving the symptoms of autism. To date, there
is only anecdotal support in the form of parental reports.(PleaseseeSection
Two for a discussion on the dangers of anecdotal parental reporting in autism
treatmentstudies).Includedinanecdotalevidence is a book by Hallaway and
Strauts(1995),whoprovideaparentalreport about the treatment of Hallaway’s
twin boys using Chelation Therapy.
Itisimportanttonotethatscreeningchildrenforleadpoisoning(notautism)is
well accepted in mainstream medicine and lead toxicity is a legitimate health
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problem that is treatable using chelation. The American Academy of Child and
Adolescent Psychiatry, adopted guidelines for lead screening and treatment in
1995, using blood tests. If a child shows elevated levels of lead in his or her
blood, the mainstream medical profession typically recommends treatment
using a form of chelation that differs from the chelation used on autistic children
(calciumEDTAversusdisodiumEDTA).However,atthispoint,thehypotheses
that metal toxicity causes autism, and that chelation will cure or successfully
treat autism,havenotbeensufcientlytested and there is no evidence to support
the claims. Consumers are confused about chelation being an accepted practice
for children who have ingested“true”heavymetalsthatcannotbeushedout
of the body any other way.
There are many correlational studies that have determined the symptoms of lead
poisoning in animals and humans. There are also many reports of lead poisoning
and an increased number of persons affected with a variety of symptoms. It
appears that the symptoms are extremely varied and diverse, affecting people in
different ways. At this point, it is unclear whether lead poisoning, or any heavy
metal poisoning, plays any role in the cause of autism. Although it is beyond
the scope of this book, the reader should know that chelation is being praised by
its practitioners as being a cure for everything from clogged arteries to sexual
disfunction.
What does the therapy actually look like?
Chelation Therapy for the treatment of autism involves either oral or intravenous
agents(dependingonthechelatingagentused),toremoveharmfultoxinsfrom
the bloodstream. The intravenous dosage takes anywhere from ten minutes to over
threehourstoadminister,dependingontheagentrequired.1 When chelation is
usedtotreatavarietyofailmentsotherthanitstraditionaluse(leadpoisoning),
it is often done over a much longer period of time. Side effects vary with the
Section One: What Works and What Doesn’t?
185
type of agent used. They can include convulsions, severe constipation, bowel
paralysis, acute toxicity, kidney failure and allergic reactions. In addition, there
havebeendeathsassociatedwithchelationandoverfteenstatemedicallicensing
boards have taken action against practitioners of Chelation Therapy.2
What else do I think?
Lead poisoning is an important environmental issue which does have far reaching
effects on human and animal health. It might be possible that occasionally a child
with autism might have been exposed to lead; however, the symptoms would be
typical of lead poisoning, not autism. To date, there is no experimental evidence
which examines the issue of lead poisoning in individuals diagnosed as having
autism and the purported therapeutic effects of treating these individuals with
Chelation Therapy.Althoughthequestion regarding the relationship between
thermerisol(mercury)invaccinesandautismhasnotbeendenitivelyanswered,
the theory that chelation can extract thermerisol and repair possible damage to the
brain, has no supporting evidence. Proponents of Chelation Therapy suggest that
autism is a result of heavy metal poisoning; however, they have no evidence to
support this assertion. The diagnosis of autism is based on a variety of behavioral
characteristics, and as of 2006, there is still no commonly-accepted, biological
marker associated with autism.Inotherwords,wecan’tdothingslikenda
tumor, count blood cells or measure lead levels to determine whether the child
has autism. After Chelation Therapy, we still can’t use a biological marker to
seeifthere has beensignicantimprovement in the child’s degree of autism.
Proponents of chelation use hair analysis,* which is not yet accepted by the
*Althoughhairanalysisistypicallyusedtodeterminedrugabuse(intheeldoftoxicology),it
is not widely accepted that heavy metal poisoning can be determined through hair analysis. For
an in-depth discussion on the shaky ground of hair analysis, Quackwatch has done a wonderful
job of exposing the weaknesses of commercial hair analysis.3
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mainstream medical community for this application. Arguably, these commercial
labs also have an economic incentive to be in the hair analysis business.
Would I try it on my child?
My child does not suffer from the majority of symptoms that are well accepted
as being caused by lead poisoning; however, if she did, I would have her tested
by a reputable physician — for lead poisoning, not autism. In addition I would
not allow the diagnosis to be done with hair sampling from a commercial
laboratorybecause theyhave aneconomic incentive to nd toxicity. More
research needs to be done before a relationship between heavy metal toxicity
and autism is established, particularly as the risks of chelating a child with
autism are kidney failure and death. In short, I would never put my child at
risk with a treatment that has no peer-reviewed evidence about its efcacyand
has a very poor safety record.
What kind of study would I like to see the chelation
practitioners do?
Prior to any study on chelation for autism, proponents of this method need to
ndamorereliablewaytomeasuretoxicitythancommercial hair analysis alone.
Oncethereisevidence that some children with autism have high levels of heavy
metals in their blood, then a study could be done only with those children who
haveelevatedlevelsofthetoxininquestion.Everychildwithautism who is a
candidate for chelation due to excessive levels of metal toxicity would then need
to receive a diagnosis of autism by an independent registered psychologist who
would also measure each child in the study using autism rating scales, IQ and
objective behavioral tests or measures(takinggreatcaretoavoidanyparental
reporting in the studydesign).Eachchildwouldneedtoberandomly assigned
Section One: What Works and What Doesn’t?
187
to an experimental and control group, without experimenter knowledge regarding
which children are in which group. After the treatmentorplacebo(giventothe
groupnotreceivingthetreatment),eachchildwouldneedtohavethesamebattery
of tests performed by the psychologist prior to the study. For condenceinthe
results, I would suggest a study should include twenty children per group, for
a total of forty children in the proposed study. If the results were to show that,
for example, cognitively impaired children’s IQrisesignicantlywithChelation
Therapy, that would show us that the hair sampling techniqueeffectivelyidenties
children who have heavy metal poisoning and that the heavy metals do indeed
affect cognitive abilityofchildrenafictedwithautism.That,initself,wouldnot
testthe“chelationtreatsautism”hypothesis.However,ifthereisasignicant
difference between objective behavioral measures and scales rating severity of
autism before and after the treatment, that would tell us that chelation does have
an effect on the degree of autism within this group of children. A study such as
this would be able to teach us much about the relationship between autism and
chelation. Unfortunately, I think that this kind of study would be potentially
harmful considering the lethal effects of Chelation Therapy on some children.
This is a serious ethical obstacle to any future chelation study.
Who else recommends for or against chelation as
a method for the treatment of autism?
There are several medical associations and a few consumer groups that warn
against Chelation Therapy in general, and a few refer to autism chelation
treatmentsspecically.TheAmerican Academy of Pediatrics states:
...there is no evidence that Chelation Therapy will improve developmental
function when given to treat mercury toxicosis. Moreover, chelating agents can
havesignicanttoxicity(e.g.hepatoxicity)andprecipitateallergicreaction.182
Chelation Therapy is therefore not recommended for the purpose of improving
neuro-developmental function in children with ASD.4
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In addition, the National Council Against Health Fraud recommends against
Chelation Therapy. They state: “The National Council Against Health Fraud
believes the Chelation Therapy is unethical and should be banned and that
Chelation Therapy of autisticchildrenshouldbeconsideredchildabuse.”5
An additional resourceestablishedtodebunkscienticquackeryisQuackwatch.
They have an entire website devoted to the issue of chelation, for a variety of
medical conditions. Particularly interesting on their website are documents
surrounding several court cases which were launched either due to the death of
an individual after chelation, or the suspension of professional licenses from a
variety of chelation practitioners.
So you’re still on the horns of a dilemma?
Before you decide whether or not to put your child through chelation, I
would strongly suggest that you read the guidelines of the American College
of Preventative Medicine Practice Policy Statement, which describes the
conditions under which a child may be at risk for heavy metal poisoning and, if
so, which proper steps to take.6 If your child does not meet the at-risk criteria,
please understand that in chelating your child, you are engaging in high-risk
experimentation that, in isolated cases, can result in death.
What’s the bottom line?
Based on the scientic research to date, there is no evidence that Chelation
Therapy is an effective treatment for decreasing the symptoms of autism in
children.
Section One: What Works and What Doesn’t?
189
Endnotes for Chelation Therapy
1Hallaway, N., and Strauts, Z. 1995. Turning lead into gold: How heavy metal poisoning can
affect your child and how to prevent and treat it. Vancouver, BC: New Star Books Ltd.
2Quackwatch, www.quackwatch.org/01QuackeryRelatedTopics/hair.html,(accessed Feb. 16,
2006).
3Quackwatch,(seen.2above).
4Committee on Children With Disabilities. 2001. “Technical Report: The Pediatrician’s Role
in the Diagnosis and Management of Autistic Spectrum DisorderinChildren.”Pediatrics, Vol.
107, No. 5, p. e85, www.pediatrics.aappublications.org/cgi/content/full/107/5/e85, (accessed
Feb.13,2006).
5The National Council Against Health Fraud. undated. NCAHF, Policy Statement on Chelation,
www.ncahf.org,(accessedAug.9,2005).
6Lane,W.G.2001. “Screeningforelevatedbloodlead levelsinchildren.” American Journal
of Preventive Medicine, Vol. 20, No. 1, p. 78-82, www.acpm.org/pol_practice.htm#several,
(accessedFeb.16,2006).
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Section One: What Works and What Doesn’t?
191
Biomedical Therapies: Intravenous Immunoglobulin
What is Intravenous Immunoglobulin Therapy?
Intravenous Immunoglobulin (IVIG), a form of blood/plasma, is used as a
therapy for autoimmune disorders and is actually considered medically necessary
for dozens of conditions. It is paid for by insurance companies such as Aetna.
The theory posited by proponents of IVIG therapy, is that there is a relationship
between autism and autoimmune disorders. Some researchers have suggested
that autism is an immune-related disorder, and have treated autism using IVIG to
address the autoimmune phenomenon that they claim to observe in individuals
with autism.1 Although there are some differences in the way that IVIG is
administered, typically the treatment itself involves the administration of IVIG
every four weeks for at least six months.
What evidence do the practitioners have that this
really works?
Ourdatabase search netted three articles which present data on IVIG therapy.1,2,3
None of these studies used control groups or random assignment and two of the
three studies measured the dependent variable, autism, in a problematic manner.
The resultsoftherstpreliminarystudy indicated that behavioral, speech and
cognitive improvements were observed in ten autistic individuals who were
treated with a six month course of IVIG.1 Unfortunately, the dependent variable,
autism, was operationalized in an unstructured and extremely subjective way.
Various behavioral therapists, speech therapists and psychiatrists involved in
the child’s life reported changes, and these reportsweresubsequentlyconverted
intoanarbitraryratingscaleusingnumbersonethroughfour(1-4)toindicate
degree of improvement.Inaddition,no“p-values”werereported to indicate
whether or not the changes in this rating scale were statisticallysignicant.
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Despite the researchers’ conclusion that children with autism improved, the
insufcientratingscalespreventusfrommakinganymeaningful conclusions
based on the results of this study. The potential for bias in the dependent measure
is high, and the lack of control prevents changes observed from being attributed
to the intervention. An additional awinthisstudy design is that some of these
children were in behavioral and speech/language therapy programs at the time.
Without controllingthevariableof“othertherapies”byutilizingacontrol group,
one cannot attribute, with condence,anyresults to the IVIG therapy. To his
credit, an IVIG researcher named Gupta, states that: “a controlled double-blind,
placebo-controlled multicenter studyis being planned.”4 We very much look
forward to that study.
The second IVIG study was conducted on ten children with autism(Pliopys,
1998).Italsodidnotgointosufcientdetailtotellushowthedependent variable,
autism, was measured prior to the study. This is not a small point. If we cannot
properly measure the degree of a child’s autism at the beginning of a study, we
will assuredly not be able to accurately measure the degree of autism after the
treatment has been applied in the study. Pliopys reported no improvement in nine
out of the ten subjects; however, one child appeared to improve dramatically.
Unfortunately, due to the lack of rigor in the pre and post measures of autism,
we have no idea whether the improvement actually occurred and, if it did,
whether the improvement can be attributed to the IVIG treatment. This is
unfortunatebecauseifthereisasubsetofchildrenwhodobenet,itwouldbe
benecialtoknowwhichsubsetofchildrenmaybecandidatesforthistherapy.
The last studywefoundinoursearch,theDelGiudice-Aschetal.(1999)study,
gave IVIG Therapy to ve children with autism and found no improvement
among the children. The difference in this study from the two earlier studies is
that these researchers measured the dependent variable, autism, utilizing four
different psychometric and autism scales. Their ability to objectively measure
improvement in post treatment makes this the strongest of the three studies.
Section One: What Works and What Doesn’t?
193
What does the therapy actually look like?
IVIG treatment is a two hour intravenous administration of a course of
immunoglobulin, a protein antibody found within the bloodstream which binds
to antigens (substances which create an immune response, i.e., an allergic
reaction,inthebody)andsubsequentlydeactivatesthem.Maintenancedoses
are given every four to six weeks; however, at treatment outset, they may have
to be administered at higher rates. The cost of this procedure is approximately
$100U.S.pergram,includingproceduralcosts(approximately$3000USDper
treatment).SubjectsarerstprescribedacourseofBenadryltocombatpossible
side effects, which include dizziness, nausea, abnormally rapid beating of the
heart, headache, fever and muscle pain.
What else do I think?
ItisquitedifcultforconsumerstodifferentiatebetweenIVIGasanexperimental
procedure or an accepted best practice treatment, because it is used so commonly
for a variety of disorders. This treatment operates under the assumption that
autismsomehowinvolvespossibleinfectiousagentsandorimmunedeciencies.1
Yet, importantly, all the possible explanations for how and why IVIG may be
effective for individuals with autism are, at this point, unproven. If indeed autism
may be an immune-related disorderforsomeindividuals,weneedrmevidence
establishing this to be the case. IVIG is postulated to work by either suppressing
particular antibodies or by easing braininammation;however,theseresearchers
haveinsufcientevidence to claim that autism is caused by particular antibodies
or braininammation. As autism cannot yet be diagnosed and measured by
lookingataphysiologicalmarker(e.g.,abloodtest),theauto-immunetheory
of autism remains as a theory, still to be supported by data.
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Would I try it on my child?
If researchers could make the link between auto-immune disorders and autism,
and show that IVIG does indeed ameliorate the condition of autism, I would be
very interested in providing this therapy for my child. However, until the research
is done, I would not subject my child or my wallet to this treatment.
What kind of study would I like to see the researchers
studying the effects of Intravenous Immunoglobulin do?
I would like to see a randomly assigned, double-blind, placebo-controlled
crossover study, with subjects receiving IVIG treatment. The dependent measures
used to evaluate the effectiveness of the intervention should be well-validated and
measure IQ or cognitive functioning, language and behavior. These measures
should be assessed by raters who do not know the purpose of the study. In
addition,ananalysisofseverity,frequencyandlongevityofsideeffects should
also be done. Finally, the results should be reported using statistical levels of
signicance,soweknowtheresultsarelikelynotduetochance.
Who else recommends against Immunoglobulin therapy
as a method for the treatment of autism?
There are several associations that warn against IVIG treatment for autism. The
New York State Department of Health has the following to say about the therapy:
“It is strongly recommended that intravenous immune globulin therapy not be
used as a treatment for autism in children because of the substantial risks and
lackofprovenbenetassociatedwiththisintervention.”5 In addition, the policy
statement of the American Academy of Pediatrics reads: “Unproven therapies also
may be based on pathophysiology and limited research, but they lack accepted
standards of proven effectiveness (e.g., the use of immunoglobulins in the
Section One: What Works and What Doesn’t?
195
treatment of autism).’’6 In May, 2005, this policywasreafrmed.Furthermore,
Dr. Marie Bristol-Powers of the National Institute of Child Health and Human
Development states: “Treatment studies do not support the clinical use of IVIG,
which would support a immunological factor in autism.”7
So you’re still on the horns of a dilemma?
Youmight wantto read Hymanet al. (2000),8 in which they speak about the
lure of complimentary and alternative medicare. Keep in mind that if IVIG is
eventually found to be effective, there will be controlled studies available to
demonstrate its efcacy.Beforethishappens, please understand thatyouare
engaging in pure experimentation with your child if you employ IVIG treatment
in the effort to ameliorate autism.
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence that the use
ofIntravenousImmunoglobulin(IVIG)isaneffective treatment for decreasing
the symptoms associated with autism.
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Endnotes for Immunoglobulin therapy
1Gupta, S., S. Aggarwal, and C. Heads. 1996. “Dysreglated Immune System in Children With
Autism:BenecialEffectsofIntravenousImmuneGlobulinonAutisticCharacteristics.”Journal
of Autism Developmental Disorders, Vol. 26, pp. 439-452.
2Piloplys,A.V.1999.“”Response to Letter by dr. Gupta Concerning The Treatment of Autistic
childrenWithIntravenousImmunoglobulin.”Journal of Child Neurology, Vol. 14, No. 3, pp.
203-205.
3DelGuidice-Asch, G., L. Simon, J. Schmeidler, C. Cunningham-Rundles, and E. Hollander.
1999. “Brief Report:APilotOpenClinicalTrialofIntravenousImmunoglobulininChildhood
Autism.”Journal of Autism and Developmental Disorders, Vol. 29, No. 2, pp. 157-160.
4Gupta,S.,S.Aggarwal,andC.Heads,(seen.1above),p.451.
5Guralnick, M., ed. 1999. Clinical practice guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years). Albany(NY):New York State Department of Health, p. IV-91.
6Committee on Children with Disabilities. 2001. “Technical Report: the Pediatricians Role in
the Diagnosis and Management of Autistic Spectrum DisorderinChildren.”Pediatrics, Vol.
107, No. 5, p. e85, http:pediatrics.aapublications.org/cgi/content/full/105/5/e85,(accessedFeb.
16,2006).
7Bristol-Powers, M. 2001. “The Etiology of Autism and NICHD Research.”National Institute
of Child Health & Human Development, Washington, DC: National Academy of Sciences.
8Hyman, S.L., and S.E. Levy. 2000. “ Autistic Spectrum Disorders: When Traditional Medicine
isNotEnough.”Contemporary Pediatrics, Vol. 10, p. 101.
Section One: What Works and What Doesn’t?
197
Biomedical Therapies: Secretin
What is Secretin Therapy?
Proponents of Secretin Therapybelievethattheuseofsecretin(agastrointestinal
peptidewhichisakindofhormone),forindividualswithautism, results in an
improvement of autistic behavior. Some researchers believe that there may be
a link between the brain and gastrointestinal functioning in autistic children.
Specically,theseresearchers hypothesize that gastrointestinal difcultiesfound
in people with autism contribute to the cause of autism, and that by forcing
thepancreas togreatly increase the production ofui1d, thereis signicant
improvement in the symptoms of people suffering with autism.1
What evidence do the practitioners have that this
really works?
Two literature searches, one in 2000 and one in 2006, were conducted. The 2000
literature search uncovered four articles, two of which were between-subject,
double-blind, placebo designs. The rst study included twenty-ve children
and the second study used sixty children. Neither of those studies reported any
improvement in the symptoms associated with autism.Oneofthesedesignswas
doneintwostages;therststagewasdesignedtoidentifychildrenwhoseemed
to be the most likely candidates to improve using secretin. These children were
given secretin injections, and using the CARS measure, parents reported any
improvementthatmighthaveoccurred.Thosechildrenwhowereseentobenet,
were assigned to the double-blind, placebo, crossover study.* This procedure
*In this study design, one group initially receives the treatment and the other receives the
non-treatment. In the next stage, the groups are switched so that the original group receiving
the treatment then receives the non-treatment, and the non-treatment group then receives the
treatment.Neithertheresearchersnorthepatients(northeirparents)knowwheneachgroup
is receiving the treatment.
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was an attempt on the part of the researchers to create an experiment where if
indeed secretin is an effective treatment for autism, they would be most likely
tondthatresult. Although I believe that parental reporting is very unreliable,
I respect the fact that these researchers attempted to create conditions where
secretin may have been most likely to have a positive effect. Despite this
design, no meaningful results were reported.2,3 The other articles were simply
case studies.1,4
Another comprehensive literature search in 2006 found much more research
had been conducted on secretin. This search netted twenty articles that present
data on the effectsofsecretintreatment.Ofthese20articles,veshowedthat
secretin had an effect on the subjects’ autismandfteenarticlesdemonstratedno
effect.Thequestionis,whatdifferentiatesthevestudies that report results from
thefteenthatdonot?Ofthevepositivestudies, only two are randomized,
double-blind, placebo controlled trials.5,6* The third study is a non-randomized
study with no placebo condition7 and the fourth study is an uncontrolled trial in
which the researchers rely on weekly parental reporting to assess improvements,
usingaquestionnaire designed to measure symptoms.8Thenalstudy1 in this
group was a case study reporting on three children. The study that deserves
attentionistheKernetal.(2002)study, as their experiment was well designed,
utilizing controls, employing different measures for autism and differentiating
groups of children into those with gastrointestinal distress and those without.
Their study is notable because for the dependent variable, autism, they used the
*The Jun et al. 2000 study is published by Tzu Chi Medical Journal which is a journal published
by the Buddist Compassion Relief Tzu Chi Foundation founded in 1989. This article was not
found in the mainstream journals, i.e., Medline, Cochrane Collection, and is not available
throughregularchannels.Arequest to purchase this article through the journal received no
reply. Therefore, we could not review the journal. Although the journal claims it uses a peer-
reviewprocess,because99percentofthescienticdata bases do not list the journal as one of
the thousands of journalsinexistance,it isquestionable whether the ndings reported by the
articlearescienticallysound.
Section One: What Works and What Doesn’t?
199
Aberrant BehaviorChecklist(ABC),partsoftheMacArthurCommunicative
DevelopmentInventory (CDI)and a GlobalAssessment scoring as well. In
addition, the researchers used a GI assessment rating (it should be noted,
however,thattheCDIandtheGIratingsreliedonparentalreporting).They
found statisticallysignicantandmeaningfuldifferencesbetweenthetwogroups,
primarily in the Irritability, Agitation and Crying ratings.*
Incontrast,ofthefteenstudies that found no effect for secretin, thirteen were
randomized, double-blind, placebo-controlled studies and of those, six included
a cross-over design, clearly a much more rigorous design than most of the studies
which reported results.Ofnoteisthatofthefteenstudies,vestudies9,10,11,12,13
used porcine secretin rather than synthetic secretin to control the potentially
differing effects of these two types of secretin. Porcine secretin was used to
address criticism about the lack of results to the synthetic rather than the natural
hormone(referredtoasbiologicorporcine).Infact,Unisetal.(2000),used
bothtypesofsecretininanefforttondoutifthereisadifference.Theyfound
none. Finally, the company sponsoring the research, Repligen, reported that
atthebeginningofthisyeartheirclinicaltrialsdidnotndanybenetforthe
children in the study.14
What does the therapy actually look like?
Different researchers used various techniquestomeasuregastrointestinal distress
prior to treatmentusingSecretin.IntheHorvathetal.(1998)study, secretin was
given during an upper gastrointestinalendoscopy(whileinsertingasmallscope
intheupperGItract)foreachpatient.The patients were put undera general
*The “Irritability,Agitation and Crying” ratings were signicant (p < .05). Although these
researchers also report other ndingsassignicant,theirp values are too high for me to agree
regarding statisticalsignicance(p<.08andp<.10).
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
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anesthetic, and biopsies of the esophagus, stomach and duodenum were taken.
In addition, pancreatic and intestinal digestive enzymes were measured. Before
the biopsies were taken, secretin was injected in order to stimulate the secretion
ofpancreatic juice (tomakethe pancreas secreteenzymes).In other studies,
patients received an intravenous dose of secretin on a one time basis or over
twoorthreevisits.InHorvathetal.(1998),thegastricjuiceswerecollected
and analyzed, and the tissues from the esophagus, stomach and duodenum were
examined under a microscope. A sample of juice from the pancreas was taken
before the secretin was given, and three additional samples were taken during
the ten minute period that followed. All three patients received a follow-up dose
three to eight months later. Although the studies differed somewhat, most of
themusedasingledoseofsecretin.Incontrast,Sponheimetal(2002),useda
controlled design where each child was given three doses of secretin over three
months. They also found that secretin has no effect on the disorder of autism.
What else do I think?
In the articles that reported any meaningful results, the children were all suffering
from chronic diarrhea. The diarrhea could be responsible for interfering with
learning and possibly exacerbating autistic behavior.Onecanreasonablyexpect
that diarrhea may work to foster a poor disposition in the sufferer. If indeed the
diarrhea abates and the digestive system improves, this could help the overall
behavior of the child to improve. It is understandable how this observation
inadvertently lead a researcher or parent to conclude that secretin has improved
the symptoms of autism in a child. However, it is possible that the autism
may not have improved at all; rather, the symptoms of gastrointestinal distress
may have disappeared or been ameliorated, which would lessen the degree of
irritability, improve concentration and the general well-being in many children,
butnot(importantly)childrenwithautism exclusively.
Section One: What Works and What Doesn’t?
201
An additional signicant complication within this area of research is that it
is unclear to what extent children may have been involved in other treatment
programs.Onechildhadreportedly undergone high-dose steroid therapy and
intravenous immunoglobulin treatment, without any reported effect. Another
child had been placed on an elimination dietspecicallytotreatthediarrhea,
which also had no effect. The researchers provide no timeline for these
interventions, making the need for a control group all the more important in
some of these studies.
Would I try it on my child?
My child does not suffer from chronic gastrointestinal distress. However, if she
did, I would make sure that we visited a reputable gastrointestinal specialist to
attempt to treat the GI tract and not blame her behavior on autism, but rather, on
the fact that she was suffering. It has been my observation over the last fourteen
years that children with autism are often underserved by the medical community
becauseitissodifculttodifferentiatebehaviors with a non-physiological source
from those caused by an underlying medical condition that may be successfully
treated,forthesimplereasonthattheautismfrequentlyblockscommunication
between the child and the doctor.
What kind of study would I like to see the researchers
looking at secretin do?
After all the research done regarding the relationship between autism and secretin,
thisquestionappearstohavehadconsiderableresearch funding already spent
in this research area. I would be interested, though, to see whether secretin
is a potential treatment for gastrointestinal distress in general, not simply for
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
202
children with autism. If indeed secretin is a treatment for certain GI conditions,
theneveryonesufferingmaybenet,includingchildrenwithautism; however,
this researchwouldbeunrelatedtoautismspecically.
Who else recommends against secretin as a method for
the treatment of autism?
The New York State Department of Health Reportwastherstoutofthegate
in1999when theystated:“Theuseof hormonetherapies(suchasACTHor
secretin) is not recommended as a treatment for autism in young children,
until such methods have been shown to be effective and safe for use in this
age.”15 Since then there have been a few others who have also recommended
against the use of secretin as a treatment for autism. Quackwatch(2005)16 has
recommended against secretin, as has the American Academy of Child and
AdolescentPsychiatry(2002).17 The Committee on Children with Disabilities
of the American Academy of Pediatrics, also recommends against the use of
secretin for autism treatment. They state: “This and more recent studies have
failedtodemonstrateanyscienticevidence to justify the use of secretin infusion
to treat children with ASD.”18
So you’re still on the horns of a dilemma?
IrecommendthatyoureadSturmey(2005),19 who does an in-depth review of
the literature on secretin and concludes that secretin is ineffective. Based on
the literature to this point, the use of secretin to treat autism can be regarded as
completely experimental.
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence that Secretin
is an effective treatment for improving the symptoms of autism in children.
Section One: What Works and What Doesn’t?
203
Endnotes for Secretin
1Horvath, K., G. Stefanatos, K.N. Sokolski, R. Wachtel, L. Nabors, and J.T. Tildon. 1998.
“Improved Social and Language Skills After Secretin Adminstration in Patients With Autistic
Spectrum Disorders.”Journal of the Association for Academic Minority Physicians, Vol. 9,
No. 1, pp. 9-15.
2Chez, M.G., and C.P. Buchanan. 2000. “Reply to B. Rimland’s ‘Comments on Secretin and
Autism: A Two-Part Clinical Investigation’.”Journal of Autism and Developmental Disorders,
Vol. 30, No. 2, pp. 87-94.
3Sandler, A.D., K.A. Sutton, J. DeWeese, M.A. Girardi,V. SheppardandJ.W.Bodsh.1999.
“LackofBenetofaSingleDoseofSyntheticHymanSecretinintheTreatment of Autism and
Pervasive Developmental Disorder.”[seecomments]New England Journal of Medicine, Vol.
341, No. 24, pp. 1801-1806.
4Richman, D.M., R.M. Reese and D. Daniels. 1999. “Use of Evidence-based Practice as a Method
for Evaluating the Effects of Secretin on a Child with Autism.” Focus on Autism and Other
Developmental Disabilities, Vol. 14, No. 4, pp. 204-211.
5Jun, S.S., P_.C.H. Kao and Y.C. Lee. 2000. “Double Blind Crossover Study of Secretin/Secrepan
Treatment for Children With Autistic Symptoms.”Tzu Chi Medical Journal, Vol. 12, No. 3,
pp. 173-181.
6Kern, J.K., S. Van Miller, P.A. Evans and M.H. Trivedi. 2002. “Efcacy ofPorcineSecretin
in Children With Autism and Pervasive Developmental Disorder.” Journal of Autism and
Developmental Disorders, Vol. 32, No. 3, pp. 153-160.
7Robinson, T.W. 2001. “Homeopathic Secretin in Autism: A Clinical Pilot Study.”The British
Homeopathic Journal, Vol. 90, No. 2, pp. 86-91.
8Lonsdale, D. 2000. “A Clinical Study of Secretin in Autism and Pervasive DevelopmentalDelay.”
Journal of Nutritional Environmental Medicine, Vol. 10, No. 4, pp. 271-280.
9Corbett, B., K. Khan, D. Czapansky-Beilman, N. Brady, P. Dropik, D.Z. Goldman, et al. 2001.
“A Double-blind, Placebo-controlled Crossover Study Investigating the Effect of Porcine Secretin
in Children With Autism.”Clinical Pediatrics, Vol. 40, No. 6, pp. 327-331.
10Unis, A.S., J.A. Munson, S.J. Rogers,E.Goldson,J.Osterling,R.Gabriels,etal.2002.“A
Randomized Double-blind, Placebo-controlled Trial of Porcine Versus Synthetic Secretin for
Reducing Symptoms of Autism.” Journal of the American Academy of Child & Adolescent
Psychiatry, Vol. 41, No. 11, pp. 1315-1321.
11Owley,T.,W.McMahon,E.H.Cook, T. Laulhere, M. South, L.Z. Mays, et al. 2001. “Multisite,
Double-blind, Placebo-controlled Trial of Porcine Secretin in Autism.”Journal of the American
Academy of Child & Adolescent Psychiatry, Vol. 40, No. 11, pp. 1293-1299.
12Roberts,W.,L.Weaver,J.Brian,S.Bryson,S.Emelianova,A.M.Grifths,etal.2001.“Repeated
Doses of Porcine Secretin in the Treatment of Autism: A Randomized, Placebo-controlledTrial.”
Pediatrics, Vol. 107, No. 5, p. E71.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
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13Honomichl, R.DE., B.L. Goodlin-Jones, M.M. Burnham, R.L. Hanse and T.F. Anders. 2002.
“Secretin and Sleep in Children With Autism.”Child Psychiatry and Human Development,
Vol. 33, No. 2, pp. 107-123.
14Autism: Secretin Therapy Found Unsuccessful. Pediatric Alert 01600184, 2004, Vol. 29, No.
2, pp. 8-9.
15Guralnick, M., ed. 1999. Clinical practice guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany(NY):New York State Department of Health, p. IV-87.
16Quackwatch, http://www.quackwatch.org/01quackeryrelatedtopics/autism.html,(accessed
Oct.5,2005).
17American Academy of Child and Adolescent Psychiatry, Policy Statement, 2005, http://www.
aacap.org/publications/policy/ps39.htm#top,(accessedAug.8,2005).
18Technical Report. 2001. “The Pediatrician’s role in the Diagnosis and Management of Autistic
Spectrum DisorderinChildren.”Pediatrics, Vol. 107, No. 5, pp. 1-18.
19Sturmey, P. 2005. “Secretin is an Ineffective Treatment for Pervasive Developmental Disabilities:
A Review of 15 Double-blind Randomized ControlledTrials.” Research of Developmental
Disabilities, Vol. 26, No. 1, pp. 87-97.
Section One: What Works and What Doesn’t?
205
Biomedical Therapies: Vitamin B6 and
Magnesium
What is Vitamin B6-Magnesium Therapy?
Proponents of Vitamin B6-Magnesium Therapy have reported that the urine of
people with autism has higher than average levels of a particular type of acid
called homovanillic acid (HVA), produced when dopamine is metabolized.1
This nding has lead these researchers to suggest that people with autism
metabolize dopamine differently than those without autism.2 In other words,
dopamine(whichisaneurotransmitter)ishypothesizedtobeuseddifferently
within the bodies of autistic people than those without autism. These researchers
administeredpyridoxine(vitaminB6)tothosewhohadhigherthannormallevels
of HVA and noticed that their autistic subjects experienced a decrease in the
level of HVA in their urine. Their biochemical measures attempt to determine
the amount of dopamine and homovanillic acid in the urine.
These researchers also employ electrophysiological measures(usingelectrodes)
to argue that children with autism have abnormal response times to sound and
light.* Vitamin B6 and Magnesium Therapy is hypothesized to alter the child’s
perception of sound and light in the brain.3Specically,theseresearchers expect
that the Vitamin B6 and Magnesium Therapy should decrease the amount of
dopamineusedupbythebody(metabolized),andcorrectabnormalitiesinthe
child’s response times to sound and light.** The researchers recommend a large
dosageofbothB6andmagnesiumforanindeniteperiodoftime.Although
they are not explicit in the relationship between this treatment and behaviors
*Abnormal response times to sound and light has been conceptualized in this literature by the term “average
cortical evoked responses.”
**Whether the abnormalities in the child’s responses have been corrected or not are measured by cortical
evoked responses.
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206
associated with autism, these researchers predict that behaviors characteristic of
autism will decrease. As autism is measured largely on behavior, if Vitamin B6
- Magnesium Therapy is effective, we should expect to see behaviors associated
with autism diminish as a result of this treatment.
What evidence do the practitioners have that this
really works?
We did a comprehensive database search and found much written about vitamin
B6 and magnesium as a treatment for autism. There were over thirty articles
either presenting data, reviewing data or debating the merits of the treatment.
When we ltered out the commentary from the research articles, we netted
twentystudies.Onceweexcludedthecase studies,4,5 the Parent Survey6 and the
subjective behavioral reporting,7 we were left with sixteen studies to review on
VitaminB6-MagnesiumTherapy.Ofthestudies which report positive results,
fourteen were done by two groups of researchers: Barthelemy, Martineau and
LeLord, and Rimland. These researchers use physiological pre-and post treatment
measures. As interesting as this may be, prior to accepting the notion that any
physiological changes are actually indicators that the treatment is effective, these
researchersmust rstdemonstrate how thesephysiological changes (suchas
responsetimetosoundandlight)areinanywayrelevanttoautism. Although
overaquarterofthestudies were double-blind, random assignment,* and placebo
controlled(withadditionalstudies designed as crossover studies where the groups
alternatedreceivingeitherthetreatmentortheplacebo),theyallshareadesign
shortcoming. The operationalization of their measure of the dependent variable,
autism, is problematic. These studies all measure autism using behavioral scales
*Nyeetal.(2005)rejectedallthestudiesduetothelackofrigorintheirdesignintermsofinadequatecon-
cealment of randomization and more than a twenty percent attrition rate of subjects.Despitethesecritiques,
we decided to look at the studies because they did have some form of randomization procedure.
Section One: What Works and What Doesn’t?
207
that are not widely accepted by researchersintheeldofautism. Instead, they
use measures that they have designed themselves or that were designed in the
hospital doing the research, rather than measures that have been designed and
testedindependently(e.g.,theAutism Behavioral Checklist, ABC, the Childhood
Autism Rating Scale, CARS, the Autism Diagnostic Interview - Revised,
ADI-R,theAutism DiagnosticObservationSchedule,ADOS).TheBehavior
Summarized EvaluationScale(BSE)wasdevelopedbyBarthelemy(1981)and
usedinMartineau et al.(1985),Martineauet al. (1986)andMartineauet al.
(1988).AmodiedBSEscale,calledtheEchelleBretonneauIIIwasusedby
Jonasetal.(1984).TheBretonneauIIwasusedbyBarthemelemyetal.(1983),
Lelordetal.(1981)andBarthelemyetal.(1980).Inaddition,aTargetSymptoms
ChecklistwasdevelopedbyRimland(1978) but not independently tested for
validity. In 1986 and 1997, Barthelemy et al. attempted to validate the BSE Scale.
In 1997 they added nine additional items to the scale and compared their scale
withRimland’sE2scale,ratherthanotherwell-establishedscalesintheeldof
autism assessment. In short, the scales used by proponents of Vitamin B6 and
Magnesium Therapy need to be independently validated using well-excepted
autism scales, rather than relying on each others’ unvalidated scales or validating
their own scales with other unvalidated scales.
Unfortunately, these measures for autism lack the validity and reliability that other
measures have gained as a result of repeated use and evaluation by a much wider
group of researchers. In terms of the biochemical and physiological measures
(e.g.,theaverage corticalevokedresponse),thereisnodata to suggest either
biochemical measures or electrophysiological measures increase or decrease
the symptoms associated with autism. In other words, increases or decreases
in these measureshavenoscientically-establishedrelationship to the typical
symptoms of autism which are, at this point, behaviorally-denedaswedonot
have any other way to measure autism.
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In contrast, the two studies that found no results8,9 did use widely recognized
measures.Tolbert(1993)usedtheRitvo-FreemanRealLifeRatingScalefor
Autism,validatedbyFreemanetal.(1986).Findlingetal.(1997)usedavariety
of accepted measures including the Childhood AutismRatingScale(CARS),the
ClinicalGlobalImpressionScale(CGI),theChildren’sPsychiatricRatingScale
(CPRS),theNIMHGlobalObsessiveCompulsiveScale(OCS),andadditional
ParentandTeachersRatingScales(thePRSandTRS)tomeasureautism(the
dependentvariableintheresearch).* It is important to use widely-recognized,
standardized measures in all autism research because these measures have been
tested for accuracy in measuring autism by many diverse researchers throughout
many years of research. Findling et al. need to be commended in their attempt
to use a large variety of measures, affording every opportunity to capture any
treatment effect, even if only a small or targeted one.
Although it can be seen as a positive step to see researchers innovate and attempt
to measure autism in a better way, it is crucial that any newer, more accurate
scaleshavesignicantoverlap with the older less precise measures, to make sure
that the newer scale is indeed measuring autism more accurately. The measures
used in the studies that report positive results do not give us that assurance due to
their lack of rigorous testing and their apparent choice not to use well-established
measures.
The second issue associated with several of the studies in the Vitamin B6-
Magnesium literature is that those who rated the autistic subjects after the study
were not blind to all conditions of the treatment3,4,10,11 or the details about who
*These measures were a combination of accepted autismscales(theChildhood AutismRatingScale(CARS),
developed and validated by Schopleretal.1980andDilallaetal.1994),orwidely-acceptedmeasures from
theeldofchildpsychiatryandpsychology(theClinicalGlobalImpressionScale(CGI)NationalInstitute
ofMentalHealth,1985;theChildren’sPsychiatricRating Scale(CPRS) (Campbellet al.1985);NIMH
GlobalObsessiveCompulsiveScaledevelopedbyInseletal.(1983).
Section One: What Works and What Doesn’t?
209
completed the behavioral measures were not clear.12 In other words, in many
of these studies, the researchers were not blind to the fact that these autistic
individuals were given vitamin B6 and magnesium. Put simply, the problem of
non-blind raters introduces bias in the evaluation portion of the experiment. A
third problem with three of the studies has to do with lack of a control group.4,13,14
Inaddition,ofthefourteenarticles,vestudies did not give autistic people in the
control group a placebo. Therefore, those who were responsible for the care of
the person with autism knew that he or she was either in the control or treatment
group. That is a problem for objective research to move forward, insofar as
the care giver’s behaviortowardsthe autistic subject mayhavereectedthat
knowledgeandundulyinuencedtheoutcome.
Anothercritiqueofoverone-thirdofthestudies is that the researchers did not
report signicancelevels(i.e.,didtheresultshappenbychance?).Wedonot
know whether the behavioral results of vitamin therapy are meaningful if the
researchers involved do not reportthesignicantlevels(p-values).Withoutthe
p-values, we do not know whether these results may have happened randomly
or due to the treatment. Four of the studies4,13,15,16 report changes without a p
value. Lelordetal.(1981)report that “none of the trends associated with B6
responsiveness is statisticallysignicant”17fortherstphaseofthestudy. In
thesecondphase,childrenare presented as improved ornotimproved(using
aggregate statistics with p-values);however,wearegivenlittleotherinformation
in terms of how meaningful these improvements are.* Finally, although the urine
samples are used to measure the amount of vitamins secreted by the children,
these measures do not in themselves measure the degree of autism, and therefore,
cannot be used to measure an improvement in the symptoms of autism.
*Figure1doesnotclarifywhichquestions show statisticallysignicantimprovement and which do not. In
addition, there is no table representing a comparison between pre-test, placebo, and post test scores with p
values. It is up to the reader to attempt to extrapolate the raw datafromthegure.
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What does the therapy actually look like?
The administrationofthevitaminB6andmagnesiumcanbeinpillorliquid
form. Although there are variations, according to the proponents of this therapy,
the vitamin should be given to the person twice per day. In the studies that were
conducted, children typically received thirty mg/kg of vitamin B6 and ten to
fteenmg/kgofmagnesiumlactateperday.
What else do I think?
Basedonscience,therearemanyquestions left unanswered with this treatment
method . We still have no idea whether vitamin B6 and magnesium, in fact,
benetspeoplewithautism. If there is a population of people with autism who
maybenet,thenweneedtondoutwhichpersonsafictedwithautismarethe
best candidates for this treatment. We also need to know the effect of megadoses
of vitamin B6 and magnesium over a prolonged period. In addition, will those
individualswhomaybenetfromthetreatment need to increase the dose due
to satiation and will that be problematic, considering how high the dose is at
the beginning of the treatment?Priortoaskingthesequestions, though, is the
majorquestion regarding whether Vitamin B6-Magnesium Therapy is indeed
effective. It is not possible to conclude, based on the given data, that vitamin
B6-magnesium has any effect on autism and its associated behaviors. Mixed
results are found in the literature; therefore, additional well-controlled and well
operationalized researchisrequiredtoevaluatetheeffectivenessofvitaminB6-
magnesium treatment. In addition, more research is essential regarding the short
and long term side effects before this treatmentcanbeendorsedbythescientic
communityand(mostimportantly)usedbyparents.
Section One: What Works and What Doesn’t?
211
Would I try it on my child?
I would not try this therapy on my child for several reasons. First, my child
doesnottoleratestrangetastingliquidsanddoesnotliketoswallowpills.So,
before I have a daily battle on my hands, I need to know that this is scientically
substantiated. Second, let’s say I can manage to teach her to like her daily dose
(hiddeninice-cream),howcanItrustmyobservation as to whether this treatment
is working? I may want the treatment to work so desperately that I may see
progress that, in fact, may not be there, or I may be so cynical that I do not see
thebenetsthatareactuallytakingplace.Third,Iamsomewhatconcernedabout
any possible side effects of high doses of magnesium, about which my daughter
may or may not complain.
What kind of study would I like to see the vitamin B6 and
magnesium proponents do?
I would like the proponents of Vitamin B6 and Magnesium Therapy to replicate the
studydonebyFindlingetal.(1997),utilizingthemoremainstreammeasurements
of the dependentvariable(autism)inhisstudy and include various forms of IQ
testing as well. In addition, the pre-and post psychometric measures must be
administered by psychologists who are completely unaware that the children to
be evaluated are in a study. Furthermore, I would like to see a well-documented,
rigorous, random assignment procedure with no one invested in the study who is
knowledgeable as to which condition the child is assigned. If the parents are to
administer the pill, they must not know the experimental condition of their child,
and they must not be given the responsibility of taking data of any kind. Finally,
the researchers must publish their new results in a peer reviewed journal and share
their experimental procedureinsufcientdetailsothescienticcommunitycan
properly attempt to replicate these ndings.
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Who else recommends against Vitamin Therapy as a
method for the treatment of autism?
There are several groups which recommend against Vitamin B6-Magnesium
Therapy for autism. The New York Report has the following to say about
vitamin therapy: “Administering high does of vitamin B6 (pyridoxine) and
magnesium is not recommended as an intervention for autism in young children
... Administering high doses of any type of vitamin or trace mineral is not
recommended as a treatment for autisminyoungchildren.”18 In addition, the
Association for Science in Autism Treatment (ASAT) states, “A number of
scienticreviewershaveconcludedthatmanyofthosetreatments have proved
ineffective or harmful. The research that appears to support several other
treatments is methodologically weak, and still others have yet to be evaluated
carefully.Theseinclude...vitaminmegadoses.”19 In addition, the American
Academy of Child and Adolescent Psychiatry also recommends against vitamins20
and the American Academy of Pediatricians says the following about vitamins:
“[Studies] have been criticized for their methodological shortcomings and failure
toaddresstheissueofsafetyofuse.”21
So you’re still on the horns of a dilemma?
Considering that research on Vitamin B6 and Magnesium Therapy has been
available since 1968, and there has not been even one independent replication of
these studies a good thirty-eight years later, you might want to consider waiting
until an independent replication of this research is published; otherwise, you are
engaging in pure experimentation.
Section One: What Works and What Doesn’t?
213
What’s the bottom line?
Based on the scienticresearchtodate,thereisinsufcientevidence to validate
Vitamin B6-Magnesium Therapy as an effective treatment for improving the
symptoms of autism.
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Endnotes for Vitamin B6 and Magnesium Therapy
1Martineau, J., C. Bathelemy, B. Garreau, and G. Lelord. 1985. “Vitamin B6, Magnesium and
Combined B6-MG: Therapeutic Effects in Childhood Autism.”Society of Biological Psychiatry,
Vol. 20, No. 5, pp. 467-478.
2Barthelemy, C., B. Garreau, I. Ledet, D. Ernoug, J.P. Muh, and G. Lelord. 1981. “Behavioral
and Biological EffectsofOralMagnesium,VitaminB6andCombinedMagnesium-Vitamin
B6 Administration in AutisticChildren.”Magnesium-Bulletin, Vol. 2, pp. 150-153.
3Martineau, J., C. Barthelemy, C. Cheliakine, and G. Lelord. 1988. “Brief Report:AnOpen
Middle-term Study of Combined Vitamin B6-Magnesium in a Subgroup of Autistic children
Selected on Their Sensitivity to ThisTreatment.” Journal of Autism and Developmental
Disorders, Vol.18, No. 3, pp. 435-447.
4Martineau, J., C. Barthelemy, and G. Lelord. 1986. Long-term Effects of Combined Vitamin
B6-Magnesium Administration in an AutisticChild.”Society of Biological Psychiatry, Vol. 21,
No. 5-6, pp. 511-518.
5Clark, J.H. 1993. “Symptomatic VitaminA and D Deciencies in an Eight-year-oldWith
Autism...IntakeConsistingofOnlyFrenchFriedPotatoesandWaterforSeveralYears.”Journal
of Parenteral and Enteral Nutrition, Vol. 17, No. 3, pp. 284-286.
6Rimland, B. 1988. “Controversies in the Treatment of Autistic Children: Vitamin and Drug
Therapy.”Journal of Child Neurology, Vol. 3, pp. S68-72.
7Moreno, H. 1992. “Clinical Heterogeneity of the Autistic Syndrome: A Studyof60Families.”
Investigacion Clinice, Vol. 33, No. 1, pp. 13-31.
8Tolbert, L., T. Haigler, M.M. Waits, and T. Dennis. 1993. “Brief Report: Lack of Response in
anAutisticPopulationtoaLowDoseClinicalTrialofPyridoxinePlusMagnesium.”Journal
of Autism and Development Disorders, Vol. 23, No. 1, pp. 193-199.
9Findling, R.L., K. Maxwell, L. Scotese-Wojtila, J. Huan, T. Yamashita, and M. Wiznitzer. 1997.
“High-dose Pyridozine and Magnesium Administration in Children With Autistic Disorder: An
Absence of Salutary Effects in a Double-blind, Placebo-controlled Study.”Journal of Autism
and Developmental Disorders, Vol. 27, No. 4, pp. 467-478.
10Rimland, B., E. Callaway, and P. Dreyfus. 1978. “The Effect of High Doses of Vitamin B6
on Autistic Children: A Double-blind Crossover Study.”American Journal of Psychiatry, Vol.
135, No. 4, pp. 472-475.
11Lelord, G., J.P. Muh, C. Barthelemy, J. Martineau, B. Garreau, and E. Callaway. 1981. “Effects
of Pyridoxine and Magnesium on Autistic Symptoms -- Initial Observations.”Journal of Autism
and Developmental Disorders, Vol. 11, No. 2, pp. 219-230.
\
12Menage, P., G. Thibault, C. Barthelemy, and G. Lelord.1992.“CD4=CD45RA+TLymphocyte
Deciency inAutistic Children: Effect of a Pyridoxine-Magnesium Treatment.” Brain
Dysfunction, Vol. 5, No. 5-6, pp. 326-333.
Section One: What Works and What Doesn’t?
215
13Martineau, J., C. Barthelemy, S. Rux, and B. Gareau. 1989. “Electrophysiological Effects of
FenuramineorCombinedVitaminB6andMagnesiumonChildrenWithAutisticBehaviour.”
Developmental Medicine and Child Neurology, Vol. 31, No. 6, pp. 721-727.
14Rimland,B.1974.“AnOrthomolecularStudyofPsychoticChildren.”Child Behavior Research,
Vol 3, No. 4, pp. 371-377.
15Jonas, C. T. Etienne, C. Barthelemy, and J. Jouve. 1984. “Clinical and Biochemical Value of
Magnesium+VitaminB6CombinationintheTreatment of Residual AutisminAdults.”Thérapie,
Vol 39, No. 6, pp. 661-669.
16Lelord,G.,E.Callaway,J.P.Muh,J.C.Arlot,D.Sauvage,B.Garreau,etal.1978.“Modications
in Urinary Homovanillic Acid After Ingestion of Vitamin B6; Functional Study in Autistic children
(author’stranslation).”Revue Neurologique (Paris), Vol. 134, No. 12, pp. 797-801.
17 Lelord,G.,etal.,(seen.11above).
18Guralnick, M. ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany(NY):New York State Department of Health, p. IV-99.
19Association for Science in Autism treatment(ASAT).www.asatonline.org/resources/library/
informed_choice.html,(accessedAug.25,2006).
20Szymanski, L, B.H. King. 1999. “American Academy of Child and Adolescent Psychiatry
Working Group on Quality Issues: Practice Parameters for the Assessment and Treatment of
Children, Adolescents and Adults with Mental Retardation and Comorbid Mental Disorders.”
Journal of the American Academy of Child and Adolescent Psychiatry, Vol. 38, p. 30.
21Committee on Children With Disabilities. 2001. “Technical Report: The Pediatricians Role
in the Diagnosis and Management of Autism spectrum disordersinChildren.”Pediatrics, Vol.
107, p. 13.
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Section One: What Works and What Doesn’t?
217
p Fast ForWord Program
p The Hanen Method
p Lindamood-Bell Learning Processes
p The SCERTS Model
Speech and Language Therapies Section 1.5
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Section One: What Works and What Doesn’t?
219
Speech and Language Therapies: Fast ForWord
What is Fast ForWord?
Fast ForWord is a computer training program designed to improve children’s
understanding of speech and language. The proponents of this method work
on various parts of language “by modifying speech acoustically to create an
expanded form of the successive speech components.”1 According to the Fast
ForWord developers, there are seven exercises which make up the Fast ForWord
program. Each exercise is said to adapt to natural speech and attempts to
address:1)auditoryprocessing(theabilitytodifferentiatesounds,words,and
relevantlanguagefromnoise);2)phonologicalanalysis(wherethefunctionand
similaritiesofthesoundsaretargeted),and3)language skills.
What evidence do the practitioners have that this
really works?
At this point, there is one study that has been conducted to test the Fast ForWord
computer program, part of which included children with autism and Pervasive
Developmental Disorder not otherwis e specied (PDD-NOS); however, this
study was not published in a peer reviewed journal.2 It is also unfortunate that
the principal investigator, Tallal, did not improve the studytobeofsufcient
qualityforpeer review as this researcher is no stranger to the peer review process,
with over twenty peer-reviewed journal articles to her name, published on the
subject of language.
A positive characteristic of the study is that it includes twenty-nine participants
with autism or PDD-NOS.Thisisalargenumberofparticipantsintheeldof
autism research(twoorthreesubjects seems to be the norm in most research
projects conducted on children with autism). In addition, the results appear
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promising. The researchers presented resultsthatarehighlysignicantoneach
of the outcome tests.Theynotethatfteenofthetwenty-ninechildrenwith
PDDimprovedsignicantly.*
Unfortunately, there are several weaknesses associated with this research. The
study was conducted by eighty-four professionalsworkingatthirty-vedifferent
sites across North America. It is a design awtohavesomanyprofessionals
involved in one study at so many different locations. Despite the fact that the
computer is collecting the data(sointer-observerreliabilityisnotaproblem),
I would be nervous about the lack of standardization. We do not know what
else occurs with the child during the sessions. Were professionals at some sites
helping the child one-on-one, whereas at other sites might have been letting
the child complete the program independently? Were some of the children
receiving standard speech and language therapy concurrently or were they all
receiving no other language therapy aside from this program? In addition, it is
not clear whether these children were involved in other therapies at the same
timeorbefore.Weneedthesepointsclariedinthearticlewhichpresentsthe
promising data.
Another awinthestudy design was that each clinician decided which pre-
and post language tests should be used on their client. Lack of standardization
in testing is an important concern. All children should have had the same
tests used for the pre-and post testing. We would then be able to compare the
results of all the children in the study and control the tendency for clinicians to
recommend a particular test because it is thought that the child’s gain could be
measured better using one test over another. In short, whatever is done with one
child, needs to be done with every child. If the researchers thought that some
*The actual data demonstrated these children improved by one or more standard deviations on every tested
measure(whichisameaningfulresult).
Section One: What Works and What Doesn’t?
221
children do better with one test over another, then both tests must be given to
each child. For research purposes, my preference is that researchers administer
a range of tests to each child. An additional weakness in their 1997 study is that
the clinician who administered the testmightprotfromtheserviceprovided.
This studywas done atthirty-vesiteswhere Fast ForWord is being offered
for a price; unfortunately, it is essential that the experimenter have no vested
interest in the outcome of the study. In other words, the outcome of the study
should have no bearing on whether or not a clinician is going to have data which
may encourage parents to have their children use the Fast ForWord computer
program. In terms of experimenter effects in general, the clinician who knows
that the child is going to be in a study, should not assess that child in that study.
Under such circumstances, bias could occur. Put simply, a researcher with no
protmotiveshouldbeconductingthepreandposttests.
Another weakness of the study is the absence of a control group. This is
problematic because researchers using a within-subject design cannot control
for other variables which may contribute to the improvements observed. In
addition, without a control group, if the researchers who test the children prior
to and after the study know that these children are in the study, then they also
know that these children are receiving the treatment. A single-blind test could
easily avoid this problem, where the clinicians doing the pre and post testing
would know nothing about the study and would not know that some children
have received this treatment, whereas others did not.
Another aw of note in the 1997 study is that the Society of Neuroscience
Reprint Series is not peer-reviewed, but rather a journal supported by the
ScienticLearningCorporation, which is the company that provides the Fast
ForWord computer program. In addition, the research supports this corporation.
Unfortunately, the presentation of the results in the Society for Neuroscience is
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unwittingly deceptive to the untrained observer as the results of the study are
presented in a very compelling way and have an aura of legitimacy. If these
researchers were to test the results of the Fast ForWord program in a manner
that could be peer reviewed, this would help parents of children with autism
tremendously.
What does the therapy actually look like?
Children start the Fast ForWord program either in a clinic or in their homes.
In both settings, the sessionsareonehundred minutes perday,ve days per
week, for a minimum of four weeks. The initial four weeks are approximately
$2,450USDwithintheclinicand$2,050USDwhendonewithinthehome.*
Both the clinic and home programsrequireadditionalcostsforpre-testing and
consultation, as well as additional weeks, if recommended. The home programs
alsohaveoptionalcomputerrentalforUS$219.95permonth.
The Fast ForWord computer programs use computer-generated speech, which has
beendigitallymodied.3 The developers of Fast Forword hypothesize that the
problem for many individuals with language learning difcultiesisthespeedof
processing, rather than the speech itself.4 As a result, the Fast Forword program
dramatically slows down and expands parts of language in order to make auditory
discrimination easier.5 The content of the program includes sound exercises, and
morecomplexwordexercises.Eachoftheseexercisesiscomprisedofvelevels
ofdifculty,withonebeinglowcomplexityandspeed,andvebeingcomparable
to natural speech.6 These programs are presented in a game format, and include
rewards in the form of onscreen animation and token economy systems.
*Thesepricesareapproximateandmayhaveincreasedduetoinationfromthetimetheywereoriginally
quoted.
Section One: What Works and What Doesn’t?
223
At any given level, the individual is maintained at a minimum of eighty percent
accuracytoensuresuccess,andtheScientic Learning Corporation provides
ongoing performance evaluation.7
What else do I think?
The use of Fast ForWord for individuals with autism assumes pre-existing
skills which many children with autismmaynotpossess(includinglanguage
comprehension). Therefore, in order for a child with autism to use this
computerized treatment program, the child must have a minimal level of language
comprehension, which means that we must logically use other methodstorst
bring the child to the level where he or she could take advantage of this computer-
based therapy.Anadditionaldifcultyforchildrenwithautism is the amount
offocusrequiredtousethecomputerprogram. The autistic child must be able
topayattention and focusforquitea long time,asthismethod requires one
hundred minutes per day for twenty to sixty days. This attention span may be
difcultforsomechildrenwithautism to achieve.
Would I try it on my child?
I would love to try this method on my child. She has the attention span and
enough language comprehension to be a candidate. There is no down side for her
because I do not see this as a risky treatment and the theory targeting various areas
of language has strong intuitive appeal. However, until I can see more evidence
that Fast ForWord is effective, i.e., via a peer-reviewed study with better controls,
I’m going to wait to absorb the inconvenience of taking my child to a practitioner
who offers this therapy, to possibly waste her time during a summer holiday and
spend the large sum that this methodrequires.Theprincipalresearcher of the
FastForWordsystemisquitehonest when she discusses the fact that the Fast
ForWord program is based on three assertions that are still highly debatable.
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In fact, she states: “FastForWordcouldbeabigstepBackward.”8 That said,
thiscompanyisquiteprolicintermsofdevelopingnewproducts.
What kind of study would I like to see the Fast ForWord
researchers do?
I would like to see a study using a randomly-assigned experimental and control
group with experimenters who are blind about which condition the child is
assigned. In addition, they need to use consistent, commonly-accepted pre-and
post measures administered to each child in the study, and there needs to be a
central site administering the treatment and the placebo. If these practitioners
want to do a within-subject design with no control group, we would need to
see guarantees that the children were not receiving any other additional therapy
concurrently. In addition, the children would need to be tested at many different
points, prior to, during and after the completion of the study. Furthermore,
the researcher needs to ensure that all the children in the study received an
independent diagnosis of autism or PDD-NOS.Moreover,itwouldbeprudent
for these children to have a battery of generally-accepted psychometric tests
administered to discern whether the therapy has any effect on IQ. Finally, it
would be advantageous to have the children tested long after the treatment has
been provided to determine whether or not the gains are maintained.
If the results do show that children in the treatmentgroupsignicantlyimprove
their language skills relative to the control group, then I would be very interested
in having my child try this therapeutic language program. I truly do hope that this
computer training program is tested independently as these are researchers who
have created a system that, if effective, could be easily adopted by educational
systems and Speech and Language Pathologists.
Section One: What Works and What Doesn’t?
225
Who else recommends for or against Fast ForWord as
a method for the treatment of autism?
At this time, there are no reputable sources recommending for or against Fast
ForWord for children with autism.
So you’re still on the horns of a dilemma?
I would recommend reading Tallal’s article in the American Speech-Language-
Hearing Association, where she frankly speaks about the experimental nature of
the Fast ForWord program,8 in order to put this research initiative in its proper
context.
What’s the bottom line?
Based on the scienticresearchtodate,thereisinsufcientevidence that the Fast
ForWord method of autism intervention is an effective treatment for improving
the language impairment in autism. We eagerly await more data.
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Endnotes for Fast ForWord
1Tallal, P. et al. 1997. Rapid Training-Drive Improvement in Language Ability in Autistic and
Other PDD Children. Berkley(CA):ScienticLearningCorporation: Society for Neuroscience,
Vol. 23, p. 490.
2Tallal, P., and M. Merzenich. 1997. Fast forword Training For Children With Language-
Learning Problems: Results from a National Field Study by 35 Independent Facilities. Rutgers
University,University of CA at San Francisco (CA):American Speech-Language-Hearing
Association, Boston, MA.
3Bolton, S. 1998. “Auditory Processing and FastForWord.”Curriculum/Technology Quarterly.
Vol. 7, No. 2, pp. 2-4.
4Tallal,P.etal.,(seen.1above).
5Bolton,S.,(seen.3above).
6Bolton,S.,(seen.3above).
7Bolton,S.,(seen.3above).
8Tallal, P., and M. L. Rice. 1997. “ Evaluating New Training Programs for LanguageImpairment.”
American Speech-Language-Hearing Association, Vol. 39. No. 3, pp. 12-13.
Section One: What Works and What Doesn’t?
227
Speech and Language Therapies: The
Hanen Method
What is the Hanen Method?
The Hanen Method was developed by the Hanen Centre, a Canadian, non-
prot organization established in 1975 that develops programs to help train
professionals and parents in early language intervention. In 1992, they published
theiroriginalmanualcalled“ItTakesTwotoTalk”1 and in 1999, they published
amanualentitled,“MoreThanWords.”2 These two manuals outline the Hanen
method for teaching children with autism to communicate. The program takes a
social-interactionist perspective on autism treatment, and emphasizes learning
communication in everyday activities. To accomplish this, practitioners use
emotion(affect),predictability, structure and visual aides. The child leads his
or her own communication development, while the parent acts as a facilitator
of interaction.
In order to promote language development, parents are instructed to follow the
‘4I’s’.Theseare:1)“Includethechild’sinterests,”whichinvolvesjoiningin
onwhateverthechildisdoing,withthepurposeofteachingjointattention;2)
“Imitatewhatthechilddoes,”whichisdonetocapturethechild’sattentionand
show the children that they have an effectonotherpeople;3)“Intrude,”insiston
joiningthechild,and4)“Interpret,”whichinvolvesrephrasingwhatthechildis
trying to say with the purpose of modeling so the child can imitate.3 In addition to
these guidelines, parents are told to play “People Games”inwhichtheyemploy
four techniquesthatgobytheacronym“R.O.C.K.”Thesetechniquesinclude:
R - Repeat what you do and say with the purpose of showing the child how
tocommunicate;O-Offerthechildtheopportunitytotakeaturnbypausing
at the same place in the games; C - Cue the child to take a turn, rst using
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“explicitsignals”andthenturningtonaturalsignals,andK-Keepitfun!Keep
it going! This is accomplished by the parent being very animated so the child
will want to stay involved.4 The program the Hanen Centre espouses applies
the4“I’s”andthe“R.O.C.K.”guidelines to routines, songs, books and toys in
order to facilitate learning in individuals with autism.
What evidence do the practitioners have that this
really works?
To date, there is no evidence to suggest that this method is effective. The Hanen
Centre was contacted and they indicated that they had no research to offer on the
efcacyofthisintervention for autism. In addition, a comprehensive database
search netted no evidence whatsoever regarding the efcacyoftheHanenmethod
on children with autism. Several studies were conducted on children with
language delays; unfortunately, these children had a variety of developmental
delays,nonewereidentiedashavingarmdiagnosis of autism.5,6,7
What does the therapy actually look like?
Typically, the Hanen program involves hiring a speech and language pathologist
(SLP)toteachagroup of parents who all share the cost of the twelve to thirteen
week course.* The course is two and one half hours per week and involves an
orientation, an assessment of parent-child interaction, eight training sessions,
three video feedback sessions, and a report by the Speech and Language
Pathologist(SLP).The report by the SLP appears to be the only system for
objectively evaluating treatment effects. This is problematic as the SLP has a
*Whenwerststartedresearchingthisbook,thiswastheprimaryofferingforparents.Sincethattime,
theHanenCentrehasbecomemoreprolicindisseminatingtheirmethodsandoffersavarietyofdifferent
training modules, and additional books and videos.
Section One: What Works and What Doesn’t?
229
vested interest in the program’s success. In addition, there appears to be no
standardization among the practitioners who evaluate the progress using
this method as each SLP measures progress according to her own criteria
and assessment measures. Also problematic is that there is no system of data
collection to evaluate how the child responds when the parents implement the
program.
What else do I think?
Hanen provides a couple of disclaimers which are of great interest. One
speciesthattheHanenprogram, “Is not designed to replace other treatments.”8
Specically,thewebsitestatesthattheHanenprogram is not designed to replace
Applied BehaviorAnalysis(ABA)forindividualswithautism. If ABA is being
used, they encourage the Hanen approach to be integrated within the home.
Unfortunately, these programs may not be entirely complimentary because the
Hanen method:1)encouragesachild-led approach in the natural environment,
and2) encourages parental involvement in the child’s preferences, including
self-stimulatory behavior. These two components are in opposition to an ABA
approach, which initially uses a direct instruction approach to learning. Here
teaching occurs with the therapists breaking tasks down into small components
and teaching directly to the child, prior to the tasks being generalized to the
natural environment. ABA also targets self-stimulatory behaviors for elimination
or replacement because these behaviors are seen to interfere with the child’s
ability to learn. However, some of the components of the Hanen method are
strikingly similar to ABA programs, including the use of positive feedback for
appropriate behavior, as well as the use of prompting and prompt fading. Hanen
also encourages repetition and routine, which are generally-accepted components
of many ABA programs.
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A second disclaimer that the Hanen website includes relates to their teaching
approach.Asoneofthe4“I’s,”theHanenmethod encourages that the parent
imitate what the child does. This is done in order to show the child that he or
she has an effect on others. The Hanen website then includes the statement that,
“not all ASDkidswillimitateontheirown,” and that “forthesekidsamore
structured approachisrecommended.”8 Although this statement acknowledges
that the Hanen method may not be appropriate for some children with ASD,
it may inadvertently give parents of children with autism the impression that
the Hanen method is effective for a considerable number of children on the
autism spectrum. Unfortunately, many children with autism are not going to
respond to the child-led, unstructured approach, which is the very reason that
this intervention is being sought by parents – that it is child-led. To say that
notallofthesechildrenareabletoimitateisasignicantunderstatement.The
majority of children with autism are unable to imitate without being taught to
do so, which is one of the reasons that they have not been able to learn language
from the natural environment.
In addition, the concept that the teaching of turn-taking and “people games”is
sufcienttoaddressthecomplexdecitsanddetrimentalmaladaptive behaviors
characteristic of autism, is highly misleading. A more accurate statement would
bethatperhapssomeofthechildrencanacquireroutines using this method as
long as they already have imitation and attending skills, and can be disengaged
from self-stimulatory and self-injurious behaviors in order to participate in social
interaction. However, this excludes the vast majority of the autistic population
prior to effective intervention and does not address the issue that learning
opportunitiesoccurinfrequentlyinthenaturalenvironment,areoftenacademic
innature(e.g.,writing,math,etc.)and/orarecognitively overwhelming for the
child.
Section One: What Works and What Doesn’t?
231
Would I try it on my child?
I would not try this therapy on my child, either alone or in combination with
another treatment method(asrecommendedbytheHanenCentre)dueto the
complete lack of evidence provided by proponents of this method as it applies
tochildrenafictedwithautism. Not only is there no evidence regarding the
effectiveness of this method, the philosophy of the method is not compelling
where children with autism are concerned. Unfortunately, despite the lack of
evidence for the Hanen method in the area of autistic disorder, this child-led
method appears to be the method of choice amongst Speech and Language
Pathologists in Canada. Fortunately, for parents in the United States, the Hanen
method has not gained wide acceptance thus far. Therefore, it is somewhat easier
tondaSpeech and Language Pathologist who does not use the Hanen method
for children with autism in the U.S. as compared to Canada.
What kind of study would I like to see the practitioners
of the Hanen Method do?
I would like to see the Hanen Centre produce some outcome data on the efcacy
of their treatment approach,specicallyforchildrenwithautism.Itwould be
encouraging to see a study using a control group and several reliable and valid
outcome measures which gauge the improvements in language, taking maturation
effects over time into account. In addition, outcome measures should address a
comprehensive examination of the skill decitsandbehavioral excesses of this
population. An independent clinician would make the diagnosis of autism and
would administer base-line and post-treatment measures. Furthermore, a Speech
and Language Pathologist with no interest in the outcome of the study should
administer standardized language tests. If an initial experiment indicates that the
Hanen method is worthwhile for this population, its treatment effects should be
compared with other interventions that have proven efcacyinautismtreatment.
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A comparative study would establish which treatment programs offer the child
the best possible outcome. This will allow parents to make informed choices
based on the state of the science.
Who else recommends for or against the Hanen Method
for the treatment of autism?
Due to the lack of popularity of the Hanen Method in the United States, much
attentionhasnotbeen paid toit (incontrasttoCanada,where, as mentioned
before, this method is widely used by Speech and Language Pathologists to
treat autism). Consequently, neither Quackwatch, nor any federal or state
governmental agencies have conducted comprehensive reviews of the Hanen
Method in their clinical practice guideline evaluations.
So you’re still on the horns of a dilemma?
If you are interested in using the Hanen method despite the lack of data supporting
this method, I suggest that you have your child evaluated by a clinical psychologist
with no vested interest in the Hanen Method, and then use a Speech and Language
Pathologist on a short term basis to provide the treatment. I would then return
to the same psychologist and have the child tested again to determine whether
ornotthechildhasbenettedfromtheadditional use of the Hanen Method. It
would be most unfortunate to waste your child’s time using the Hanen Method
exclusively when there are other methods with better evidence regarding efcacy
for autism treatment.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence that the Hanen
Method is an effective method for improving the language impairment associated
with autism.
Section One: What Works and What Doesn’t?
233
Endnotes for the Hanen Therapy
1Manolson, A. 1992. It Takes Two to Talk.Toronto,ON:AHanenCentrePublication.
2Sussman, F. 2002. More Than Words: The Hanen Program for Parents of Children With
Autism spectrum disorder.Toronto,ON:TheHanenCentre,www.hanen.org,(accessed Feb.
21,2006).
3Sussman,F.,(seen.2above).
4Sussman,F.,(seen.2above).
5Girolametto, L.E. 1988. “Improving The Social Conversation Skills of Developmentally
Delayed Children: An Intervention Study.”Journal of Speech and Hearing Disorders, Vol.
53, pp. 156-167.
6Tannock, R., L.E. Girolametto, and L. Siegel. 1992. “The Interactive Model of Language
Intervention: Evaluation of its Effectiveness for Pre-School-Aged Children with Developmental
Delay.”American Journal of Mental Retardation, Vol. 97, No. 2, pp. 145-160.
7Girolametto, L., P.S. Pearce, and E. Weitzman. 1996. “The Effects of Focused Stimulation for
Promoting Vocabulary in Young Children With Delays: A Pilot Study.”Journal of Children’s
Communication Development, Vol. 17, No. 2, pp. 39-49.
8TheHanenCentre,www.hanen.org,(accessedFeb.21,2006).
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Speech and Language Therapies: Lindamood-Bell
Learning Processes
What is the Lindamood-Bell Learning Processes?
According to the Lindamood-Bell Corporation, Lindamood-Bell Centers of
Learning are designed to offer programs that develop the “sensory-cognitive”
processes, which proponents state are the basis for learning academic skills such
as, “reading, spelling, math, visual-motor skills, language comprehension, and
criticalthinking.”1 The centers offer clinical, school and workshop programs
addressing the many academic skill decitsseeninlearnersofallages.There
are several different curricula and materials designed and sold by Lindamood-
Bell and their publishing company, Gander Educational Products. The particular
curriculum is determined for each child based on initial assessments.
What evidence do the practitioners have that this
really works?
There is currently no evidence that the Lindmood-Bell learning processes are an
effective intervention for individuals with autism. Lindamood-Bell do have over
a dozen peer-reviewed journal articles on different learning disabilities such as
dyslexia, spanning from 1991 to 2002. The latest comprehensive database search
in 2006 found no peer-reviewed studies on the efcacyofthismethod for children
with autism. The Research and Development Department at Lindamood-Bell
were contacted by us in the past for information regarding outcome data on the
use of their products for individuals with autism. They shared plans to collect
data on their method; unfortunately, the design they described does not meet the
minimumstandardsofrigorforscienticinquiry.AccordingtoLindamood-Bell,
there will be no experimental design; rather, they will select a handful of students,
in an unspecied manner, and present pre-and post Lindamood-Bell results.
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Theinformationprovidedtomeindicatesthattherewillnotbeasufcientlylarge
number of students to perform group statistics and there will be no independent
diagnosis of autism required for the children in the prospective research at
Lindamood-Bell. Finally, the case studies will be reported in their own brochure
information — they will not be published within a peer-reviewed journal.
What does the therapy actually look like?
The particular Lindamood-Bell programs which are used for individuals with
autismareunspecied.Thepractitionersgiveeachclientabatteryoftests to
assess where the problems lie and then determine the program which best serves
the needs of the client. The programs are available to students in either a clinical
or school setting. Costs for the programs vary, depending on the individual
assessment of the student. They have over forty centers which offer one-to-
one instruction with trained personnel, throughout the United States and one
practitioner in the United Kingdom.
Would I try it on my child?
Iwouldverymuchliketotrythiscurriculumonmychild;however,Iwouldrst
requiresomeevidence that these curricula are effective for children with autism
before investing time and money on the method. I would be very interested in
understandingwhichprerequisiteskills are necessary, prior to purchasing the
materials. I would also like to see some evidence that children with autismbenet
aslongasthey have the prerequisiteskills. This is one of those unfortunate
situations where there may be some very valuable materials here for autism;
however, without any rigorous testing of these materials on children with Autistic
Spectrum Disorder, we will never know with certainty whether what they have
to offer is valuable for children with autism.
Section One: What Works and What Doesn’t?
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What else do I think?
Despite the current lack of peer-reviewed supportive research on Lindamood-
Bell products and services for individuals with autism, informational material
regarding international conferences on the topic claim to have research-driven
programs for developing languageandliteracy.However,nowhereisitspecied
where the available research on these products can be found as it relates
specicallytochildren withautismspecically.Severalspeakersreport case
studieswithindividuals“ontheautisticspectrum.”Unfortunately,case studies
are an inappropriate assessment of any given treatment modality because there
is no control over confusing(confounding)variables which may be responsible
for the changes observed. Also, the autistic spectrum is a diverse and varied one.
It ranges from individuals diagnosed with Rett’s syndrome and severe autism, to
individuals who are diagnosed with Asperger’s syndrome. There is a great deal
ofboth“inter”and“intra”diagnosticvariability in autism spectrum disorders
and, as a result, there is great diversity in the number and severity of skill decits.
Moreover, the kinds of programsofferedbyLindamood-Bellhaveprerequisite
skills that might only be attained by a small portion of individuals with an autistic
spectrum disorder.Thisisnotaninsignicantpointinsofarasitistheoverall
value of the method for this group of children.
Informational material provided by Lindamood-Bell indicates that they approach
autism as a “Language Processing Spectrum Disorder.” While language is
an important skilldecitforthispopulation, there are other skill decitsand
behavioral excesses that do not pertain to language processing but which also
form diagnostic criteria for the disorder. These other skill decitsandexcesses
are not addressed through the kinds of academic programs provided in the
Lindamood-Bell system.
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What kind of study would I like to see the Lindamood-Bell
practitioners do?
I would like to see them conduct research which can stand up to the scrutiny of
peer review, rather than work that is published solely in marketing materials.
Also,claricationisrequiredonexactlywho,ifanyone,canbenetfromthese
programs.Specically,whatkindsoflanguageprerequisitesarerequiredinorder
to successfully learn the skills being targeted? We do not know. Additionally,
how useful and generalizable are the skillsbeingacquired?Onceagain,wedo
not know. The child is being assessed with pre-and post tests, so what exactly
is being assessed?Doesthechildacquireaskillorlearnmaterial?Doesthe
learningacquiredthroughaLindamood-Bellprogram generalize to other settings,
tasks and materials? We similarly do not know these things either, which are
holesthatneedtobelled.
Who else recommends for or against Lindamood-Bell as
a method for the treatment of autism?
The Lindamood-Bell system is not widely used by parents of children with autism.
Therefore, there has been little scrutiny among those in the autism community
andnoofcialstatementsfromreputableorganizationsregarding the state of
the science with Lindamood-Bell materials.
So you’re still on the horns of a dilemma?
Despite the lack of data supporting this method for children with autism, if
you are still interested in using the method, I suggest that you have your child
evaluated by a clinical psychologist with no vested interest in the Lindamood-Bell
Learning Process and then use one of their consultants so that you are sure that
the treatmentdelityishigh.Iwouldthengobacktothesamepsychologist and
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have the child retestedtodeterminewhetherornotthechildhasbenettedinany
way from this learning system. It is important to follow your child’s progress
using generally accepted tests rather than measures created, or supplied by, the
practitioner who is providing the treatment.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence that the Lindamood-
Bell Learning Processes are an effective treatment for improving the language
impairment that is characteristic of autism.
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Endnotes for Lindamood-Bell
1Lindamood-BellLearningProcesses(n.d.).SanLuisObispo,CA.p.1.
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Speech and Language Therapies: The SCERTS
Model
What is the SCERTS Model?
The SCERTS Model is an approach that concentrates on improving the
communication and social ability of children with autism. SCERTS (which
stands for Social Communication Emotional Regulation, and Transactional
Support1) concentrates on enhancing the child’s joint attention skills, in order to
improve his ability to communicate with others. In addition, this model targets
the child’s ability to use symbols and thereby improve communication, play
and creative language. Further, emotional regulation is taught to improve the
child’s self-regulation, abilitytondemotional support in others and be able
to handle overwhelming sensations that practitioners refer to as dysregulation.
The SCERTS Model also concentrates the child’s ability to use a variety of
educational, interpersonal, family and professional supports. The goals are taught
in a developmental sequence,indifferentsettings and, often, in a natural and
inclusiveenvironment(suchasaschool).Thismethod could be categorized as
one that is based upon a developmental perspective.
What evidence do the practitioners have that this
really works?
There is no data supporting the SCERTS Model. Proponents claim that this
model has been developed based on over twenty years of research and that it is
“consistent with recommended tenets of ‘evidence-based’practice”;2 however,
the articles that they use to support the model are mostly theoretical. In short,
there is a conspicuous lack of well-designed studies(evidence)supportingthis
philosophy.Otherthanthepublications from the developers of the SCERTS
Model,theareasof“empirical”supportfor the SCERTSModelcomeoutof
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the Positive Behavioral Support literature (which is long on philosophy and
short on data),theFloor-Time literature(whichalsosuffersfromalackofdata)
and the Hanen literature (which isnot empiricallysupported either). Please
see the various sections in the book for more detail on each of the areas which
are relied upon by the SCERTS Model. Proponents claim that their model is
consistent with the recommended practices for autism treatment; however, until
the SCERTS Model is independently tested, its claim of empirical support is
highlyquestionable.
What does the therapy actually look like?
The SCERTS model uses one-on-one instruction for children who need more
support, or group instruction for those who need less support. The intervention
takes place in the school classroom and uses a structured special education
teaching approach, utilizing a variety of prompting methods when necessary.
Proponents claim that they take advantage of the children’s strengths to
target their weaknesses(e.g., using visualratherthanauditory teaching). To
the untrained eye, at times the model in the classroom looks like traditional
structured special education teaching. When SCERTS is used in a segregated
setting, there is typically a special educational teacher and a number of school
aides are assigned to several children. There is also a play component where
the children are encouraged to engage in pretend play. An additional facet of
the program incorporates opportunities for the children to use different types of
apparatus typically found in Sensory Integration Therapy, e.g., special swings.
Another facet of the curriculum addresses the ability of children to regulate their
emotions by giving them the tools to feel better, e.g., to ask for help if they are
havingdifculty.Teachersandaideswillalsosootheachildbyapplyingphysical
pressure techniquesbasedontheliterature on Sensory Integration Therapy. The
curriculum also includes teaching children to calm others if they see that a peer
Section One: What Works and What Doesn’t?
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is upset. There is an integrated component of the program which helps typical
peers learn to relate to children with autism spectrum disorder.
The curriculum is adapted or modied to emphasize visual strategies in the
form of pictures with which to communicate, i.e., through the use of the Picture
Exchange Communication System (PECS),and encourages thechild to read
books about emotions. Parents are looked upon as collaborators and included
in the educational process by incorporating the PECS icons in the home.
Practitioners of the SCERTS Model also provide emotional support for parents
For an in-depth demonstration of the SCERTS Model, developers of the model
have produced three videos illustrating their model for children needing varied
amountsofsupport.Therstvideoisanintroductionandoverviewofthemodel
and the other video-tapes show the SCERTS model on children who initially
needconsiderablesupportandthen,subsequently,lesssupport.
Would I try it on my child?
While most of the concepts in the SCERTS Modelseemappealing(particularly
the part where the school system is actually supposed to be cooperative and listen
toparents),ifmychildwerestartingoutwithlittlelanguage and poor attention
skills, I would not utilize this method. The SCERTS Model does incorporate
visual strategies, which are important for many children with autism spectrum
disorder (including the PECS system). However, I would want my child to
graduatequicklyfromPECStotextandverbalization because it is preferable
to communicate in the world verbally(if possible). I didnot see proponents
of the SCERTS Model present sufcient strategies in their literature to curb
various self-stimulatory and anti-learning behaviors characteristic of autism
that blocks attention. I would be concerned that my daughter would not make
enough progress due to the interference of problematic behaviors. In addition,
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although play, communication and creative language sound like wonderful goals,
until there is evidence that these goals have been met using this method, I would
not have my child enrolled in the SCERTS educational program.
What else do I think?
Much of the SCERTS Modelisconcernedwith:1)howadultsandschoolssystems
make decisions about children with autism spectrum disorder,and2)thesupport
that families and professionalsrequiretobe successful, rather than aboutthe
efcacyofthemodel for autism intervention. Quite troubling is that the SCERTS
Model has all the appearance of being a method designed to rehabilitate existing,
inadequateschoolssystems so they can adapt to coping with autistic children
in the school, rather than offer the most effective treatment possible for autism
spectrum disorder. It was in 1982 when one of the developers of the SCERTS
ModelrststarteddiscussingtheroleoftheSpeech and Language Pathologist in
the assessment and intervention of children with autism.3 It is over twenty-four
years later, and although proponents of SCERTS have written much about this
topic and developed a model, they still have not tested their model independently.
In short, an independent test on the SCERTS Model is long overdue.
What kind of study would I like to see the SCERTS
practitioners do?
Due to their claim that the SCERTS Modeladdresseswhatpractitionersdene
asthe “core” challengesofchildren with autism,4 it is time for the SCERTS
Model to test their protocol against the main competitor which is, at this point,
Intensive Behavioral Treatment. To do this, I’d like to see a between-subject
Section One: What Works and What Doesn’t?
245
design utilizing a variety of autism measures including IQ tests, and Speech
and Language measures. Proponents of SCERTS disagree with utilizing IQ
and post-intervention placement measures. They state: “These measures may
not be ecologically valid because they do not measure changes within natural
environments, do not address the core ‘decits’inASD, and are particularly
problematic for infants and young children.”5 The discounting of these
measures results in a lack of objective testing; therefore, along with their goals
of measuring improvement in communication, motivation, social competence
and generalization of skills, SCERTS researchers would be well advised to use
the widely accepted measures from autism research as well (which includes
cognitive testing and behavioralmeasurement).
Who else recommends for or against SCERTS as
a method for the treatment of autism?
Although the SCERTS Modelhasnotbeenrecommendedspecically byany
reputable clinical practice guidelines, the New York State Department of Health
Report has recommended against the DIR method, upon which SCERTS claims
to be partially based. For more detail on the lack of scienticsupportforthe
other models upon which the SCERTS Model rests, please read the sections in
this book on the Hanen Method and Positive Behavioral Support.
So you’re still on the horns of a dilemma?
Despite the lack of data on the SCERTS Model, if you still would like to
essentially experiment with your child by placing him in a school system that
adopts this model, I would encourage you to have an independent, licenced
psychologist take baseline data prior to beginning the SCERTS program, and
then have the child retestedatregularintervals(e.g.,yearly)toensurethatsome
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progress is actually being made. If there is no objectively-measured progress
within one year, it would be wise to choose an alternative, well-settled autism
treatment for your child.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence that the SCERTS
Model is an effective treatment to ameliorate the symptoms associated
with autism.
Section One: What Works and What Doesn’t?
247
Endnotes for the SCERTS Model
1Prizant, B.M., A. Wetherby, E. Rubin, and A.C. Laurent. 2003. “The SCERTS Model: A
Transactional, Family-Centered Approach to Enhancing Communication and Socioemotional
Abilites of Children With Autism spectrum disorder.”Infants and Young Children, Vol. 16, No.
4, pp. 296-316.
2Prizant,B.M.,A.Wetherby,E.Rubin,andA.C.Laurent,(seen.1above),p.298.
3Prizant, B.M. 1982. “Speech-Language Pathologists and Autistic Children: What is Our
Role? Part 1. Assessment and Intervention Considerations. Part II. Working With Parents
and Professionals.”American Speech and Hearing Association Journal, Vol. 24, pp. 463-468,
531-537.
4Prizant,B.M.,A.Wetherby,E.Rubin,andA.C.Laurent,(seen.1above),p.313.
5Prizant,B.M.,A.Wetherby,E.Rubin,andA.C.Laurent,(seen.1above),p.313.
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Section One: What Works and What Doesn’t?
249
p Art Therapy
p Auditory Integration Training
p Craniosacral Therapy
p Dolphin Assisted Therapy
p Exercise Therapy
p Facilitated Communication Training
p Holding Therapy
p Music Therapy
p Pet-facilitated Therapy
p Sensory Integration Therapy
p Vision Therapy
Miscellaneous Therapies Section 1.6
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Section One: What Works and What Doesn’t?
251
Miscellaneous Therapies: Art Therapy
What is Art Therapy?
Art Therapy is based on the philosophy that through the artistic process, we
can reach a person with autism. Although there does not seem to be a singular
philosophy which drives Art Therapy as applied to children with autism, there
is a Freudian overtone from this work which assumes that people with autism
requiretheir egoto bedeveloped, and thatArt Therapy can accomplish this
goal.1 In addition, Art Therapy is believed to help children with autism organize
theirsensoryworld(i.e.,helpprocesstheincominginformationfromtheirve
senses).2Furthermore,Bentivegnaetal.(1983)provide a case study about a
child who attended psychotherapy and art therapy concurrently. The child is
described as able to communicate with the outside world through his artwork.
There does not appear to be a uniform Art Therapy protocol that is embraced by
practitioners; rather, there is a variety of philosophies which promote the use of
artto“reach”thechildwithautism.
What evidence do the practitioners have that this
really works?
Despite a thorough search through many data bases, I did not net any peer-
reviewed journal articles reporting data on the efcacyofArt Therapy for persons
with autism. The eight articles found tend to analyze communication through
the artwork and compare an autistic person’s artwork to the typical population;
however, none of these articles even attempt to show how Art Therapy actually
ameliorates the condition of autism.Onearticle3 chronicles the attempted use of
art as a way to integrate children with autism with their non-disabled peers. These
researchers found that art was a good medium to increase the social behavior
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of the non-disabled peers toward the children with autism. However, there was
nothing inherent in Art Therapy that improved the condition of autism.
What does the therapy actually look like?
Although there does not seem to be one distinctive protocol utilized to work with
children with autism using Art Therapy, materials and activities which promote
creativity4 are introduced to the child. Art Therapy, as described by Buck et al.
(1984),appearstobeclient-led,havingthepersonwithautism independently
explore the art materials that are presented.
What else do I think?
Some forms of Art Therapy have much in common with Sensory Integration
Therapy, because the child experiences the materials in a sensory manner. In
addition, there seems to be a undercurrent of Freudian or Bettleheimian philosophy
in Art Therapy, yet there is no data supporting either Freud’s or Bettleheim’s
philosophy when it comes to autism. In fact, Bettleheim’s philosophy regarding
the supposed cause of autism (the refrigerator mother hypothesis — “cold,
uncaringmother”)hasbeenthoroughlydiscredited.
Would I try it on my child?
No I would not. I would be more than willing to have my child take art lessons
as a form of productive leisure or as a hobby, if she enjoyed art. However, I have
seenabsolutelynothinginthescienticliterature to indicate that Art Therapy
even deserves the word “Therapy”attachedtoit.
Section One: What Works and What Doesn’t?
253
What kind of study would I like to see the Art Therapy
practitioners do?
Prior to rigorously testing Art Therapy,thereneedstobeadened treatment
protocoldeveloped.Oncetheindependent variable of Art Therapyisdened
objectively and operationalized so that it can be tested, only then is the supposed
treatment protocol worthy of the term “therapy.”However,notonlyis there
no well-dened protocol for Art Therapy, but there isn’t even a theory that
hypothesizes why Art Therapy should work for children with autism. Clearly,
thisisafundamentalprerequisitefortesting this method.
Who else recommends for or against Art Therapy as
a method for the treatment of autism?
Art Therapy has been ignored, for the most part, by those writing clinical practice
guidelines, as this therapy is not considered dangerous nor is it prohibitively
expensive: therefore, parents have nowhere to go to check on the efcacyof
Art Therapy.
So you’re still on the horns of a dilemma?
Due to the complete absence of any data on the effectiveness of Art Therapy, I
would caution against the use of this so-called treatment, especially if it is to the
exclusion of validated autism treatment. Art Therapy has not been demonstrated
to be harmful; however, I would expect no results other than perhaps an enjoyable
leisure time activity for your child. I would stress again that Art Therapy cannot
be characterized as therapy for autism.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence to conclude that
Art Therapy is an effective treatment for improving the symptoms characteristic
of autism.
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Endnotes for Art Therapy
1Scanlon, Kathleen. 1993. “Art Therapy with AutisticChildren.”Pratt Institute Creative Arts
Therapy Review, Vol. 14, p. 37.
2Scanlon,K.,(seen.1above).
3Schleien, S., T. Mustonen, and J. E Rynders. 1995. “Participation of children with autism and
non-disabled peers in a cooperatively structured community art program.”Journal of Autism
and Developmental Disorders, Vol. 24, No. 4, pp. 397-413.
4 Bentivegna, S., L. Schwartz, and D. Deschner. 1983. “The use of art with an autistic child in
residentialcare.”American Journal of Art Therapy, Vol. 22, pp. 51-56.
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255
Miscellaneous Therapies: Auditory Integration
Training
What is Auditory Integration Training?
Auditory IntegrationTraining(AIT)wasdevelopedbyDr.GuyBerardinthe
1960s and was popularized in the United States by Dr. Alfred Tomatis, as a
treatment for many cognitive or behavior problems, including autism. Berard
suggests that autism is due, in part, to distortions in hearing, which create
avoidance behaviors in individuals with autism, particularly as a reaction to
extremely acute sounds.1 Auditory Integration Training was developed to lessen
autistic behaviorsby“re-educating”thehearingsystem. Auditory re-education
is believed to take place through mechanical massage of the different parts of
theear(ossicles,eardrumandcochlea)and,thereby,correctauditorydistortions.
There is no clear data on how exactly Auditory Integration Training works in the
ear, but several explanations are available in the literature.
What evidence do the practitioners have that this
really works?
Ourdatabase research found many published and unpublished articles on Auditory
Integration Training (AIT). Most of those articles were either only opinion
pieces, reviews, or commentary. There were twenty-eight studies in which
researchers actually collected data on the AIT intervention; however, most were
either unpublished, presented at conferences, or published in non-peer reviewed
journals, pamphlets or short books. Not surprisingly, most of the studies which
were unpublished or published in non-peer-reviewed newsletters or reports
found that AIT was ofbenet(pleasesee page SectionTwoforadiscussion
on the importance of peer review). There were in total, nine peer-reviewed
studies which presented data.Ofthesenine,threewerecase studies2,3,4 which
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lackscienticrigor,andtwowereopenpilotstudies(theresearcherswerenot
blindtoexperimentalprocedures)withnocontrol groups or appropriate within-
subject design procedures.5,6 There are four peer-reviewed studies on AIT which
randomly assign subjects to either experimental or controlgroups(wherethose
in the control group received a placebo treatment that closely mimicked the
treatment procedure).Twoofthestudies reported results which they attributed to
AIT.7,8 In contrast, two of the studies reported either no effect of AIT on autism9
or reported effects which could not be attributed to AIT.10
These four studiesmeritcloserexamination.Intherststudy where researchers
reported positive results for AIT,11 seventeen autistic children and adolescents
participated. Each subject had a diagnosis of autism from an independent
agency. The researchers matched pairs of subjects in terms of the subject’s age,
sex, hearing sensitivity and possible ear infections, and then randomly assigned
subjects from the matched pair to the control or experimentalcondition(which
is a good idea as seventeen subjects is not a large number and matching pairs
helpsensure that thetwogroups are similar);however,theonevariable that
researchers did not use to match children in the study was degree of autism(using
objective behavioral and IQ measures).Unfortunately,degreeofautismisthe
most important variable that should have been used for matching.
There were several major awsinthestudy. First, the researchers over-relied upon
parental reporting, using the Aberrant BehaviorChecklist(ABC),theHearing
Sensitivity Questionnaire(HSQ)andtheFisher’sAuditoryProblemsChecklist
(FAPC).Anadditionalproblemwiththestudy is that only the ABC research
instrument was used to measure improvement in the children’s behaviors. Ideally,
several autism measures should have been used to ensure that the reported results
are accurate. Furthermore, the researchers did not succeed in creating two groups
that were similar. Their strongest measure for autism, the Aberrant Behavior
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257
Checklist(ABC),demonstratedthat the groups were signicantlydifferentat
the outset of the study. Although they attempted to deal with this problem by
using statistical procedures(theysubtractthepretest score from the three month
scoretomeasurethechangeonly),thiscompletelyunderminesthebeliefthat
random assignment and matching did, in this case, create two groups which were
similaratthebeginningoftherststudy.Inotherwords,thismajorawcalls
intoquestion all the results of these researchers’ studies. After attempting to
account for the basic awofthetworesearchgroupsofchildrenbeinginitially
different, these researchersdidndadifferenceinthegroupsafterthetreatment
based on the ABC scores and in four of the sub-scales in the ABC. However, due
to initial difference between groups, I consider these results unreliable to arrive
at any conclusions about how well AIT works to treat autism.
The second study12 showed major improvements in the experimental design over
the initial study.13 Eighty children participated in the study and were randomly
assigned to the study groups. It is notable that eighty children in autism-related
research is an impressive number of subjects for one study. Noteworthy also
is that all children in the experiment were diagnosed from an independent
agency. The study tested the children prior to and after the treatment, by using
a variety of psychometric measures: the Autism BehaviorChecklist(ABC);the
Developmental BehaviorChecklist(DBC)inateacherandparentversion;parts
of the Peabody Picture Vocabulary Test(PPVT), and the Leiter International
PerformanceScale(LIPS).Thestudyfollowedthechildrenfortwelvemonths
after the completion of the study. The use of a number of tests to rate variables
which are indicators of autism, administered by teachers and psychologists,
isasignicantimprovement over prior studies testing AIT. In this study, an
independent psychologist tested the children using the ABC, LIPS, and PPVT
measures and trained the child to go through a specialized hearing test (an
audiometric assessment). In addition, there were tests to demonstrate that
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different researchers, taking the same data, recorded the same results(pleasesee
Section Two for a discussion on inter-observer reliability).
Bettison’s results show that the groups were indeed similar prior to treatment,
which is important because a study needs to compare one group to another.
(ThisimprovementisincontrasttothestudyconductedbyRimland(1994),in
whichthegroupsweredifferentpriortotreatment).Thisndinggivesmea
high degree of condencethataslongastherearenootherseriousawsinthe
study, we can take the results of the Bettison study seriously.
WhatdidBettisonnd?Well,herresultsarequiteinteresting. She found that
the children improved in both the experimental and the control group. When
comparing the experimental and control group after the treatment, there was
no signicant difference between each group of children on most measures
(specicallytheAutism BehaviorChecklist(ABC),theDevelopmental Behavior
Checklist(DBC),andtheIQ tests).Inotherwords,bothsetsofautistic children
improved — even the children who did not receive the auditory integration
trainingbut,instead,listenedto unmodied music. Put simply, the Auditory
Integration Training itself had no effect on degree of autism. Many of the
improvements of both groups are statisticallysignicant,which is somewhat
perplexing. Mudfordetal. (2005)suggest that this may be an experimental
artifact. Specially, they suggest that the improved scores may be the result of
administeringthesamequestionnairesmultiple times (each child would have
beenevaluatedwiththequestionnairetentimes—vetimesbytheparentand
vetimesbytheteacheronvedifferentoccasions).Theresults of particular
interest are the improvement of both groups on two cognitive tests(thePPVT
and the LIPS).Unfortunately,despitethestatisticalsignicance,thestandard
deviation of the resultsisverylarge(whichincreasesthepossibilitythatresults
couldhavehappenedbychancealone).Inaddition,thebehavior test administered
Section One: What Works and What Doesn’t?
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bytheteacher(theDBC)providedaninteresting result. The control group had a
statisticallysignicant,butweak,change.Ofnoteisthatwhentheteacherand
theparentsllouttheexactsamequestionnaire(theDBC),theimprovements
the parents see are much greater than what the teacher records, which further
exempliesmyprofoundmistrustofparental reporting.* Keep in mind that the
teachers and parents are observing the same children. Bettison also makes the
same observation, that parental reportingisinatedduetoparentalhighhopes
for their children.
Asidefrom thehypothesizedquestionnaire effect, there are other possibilities
aboutwhybothgroupsimproved.First,theremaybeanotherinuencepresent
at the same time as the experiment but not a result of the experiment. What
causesthisconfoundinginuencemaynotbeclear;however,thefactthatthe
studycomparestwogroups,allowsustomakesurethisunintendedinuence
does not fool us into thinking that the Auditory Integration Training actually
has an effect. Another explanation for the improvement of both groups is that
there may be no effect other than maturation effects, paired with the effect of
the various educational or other treatment programs in which the children are
enrolled. In short, based on the results of the best designed study on AIT, there is
insufcientevidence to conclude that auditory integration training is an effective
treatment for children with autism.
Anotherquestion that arises from this research is the premise upon which this
therapy is based: AIT practitioners assume that auditory distortions do exist
intherstplace.14Thisbeliefhasnotyetbeenveriedduetotheobstacleof
audiometrically testing individuals with autism.15
*The teacher scores for the experimental group were 42.93 before, and 40.33 after the experiment. The
teacher scores for the control group were 44.85 before, and 38.30 after the experiment; Parent scores for
the experimental group were 64.80 before, and 52.88 after the experiment. Parent scores for the control
group were 63.13 before, and 47.20 after the experiment.
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There is also evidence to support the hypothesis that AIT is not an effective
treatment for autism. Zollweg et al.16 used a double-blind experimental design
and found that the behavior of both the treatment and control groups improved
slightly(basedontheAberrant Behavior Checklist [ABC])whichonceagain,as
in the Bettison study, suggests that AIT was not responsible for the improvement.
By far the best design study in this literatureisMudfordetal.(2000).17 These
researchers measure autism using behavioral rating scales, direct observation and
psychometric measuresinacrossoverdesign(i.e.,thechildrenintheexperiment
experienceboth theexperimental and controlconditions) where thechildren
were randomly assigned in terms of base-line measures. They found no results
andconcludethat“nochildrencouldbeidentiedasbenetingfromauditory
integrationtrainingtoaclinicallyoreducationallysignicantdegree.”18
What does the therapy actually look like?
Auditory Integration Training involves the electronic processing of music which
hasbeenmodulatedandlteredthroughheadphones.Themusic typically contains
trackswithafasttempoandwidefrequency.19 There are two types of auditory
integration training offered, the Berard method and the Tomatis method. These
two methods differ in the underlying theory, amount of treatment and in type
of sounds used. The Berard method was developed to address the supposed
auditory perception problems which result in autism. The Tomatis method was
developed to address the purported disruption in the mother-child bond which
he believes occurs in utero due to the mother’s use of harsh and cold tones. As a
result, Berard targets hypersensitivity to sound whereas Tomatis targets listening
and comprehension. To address the hypersensitive perception to certain sounds,
the Berard approachattemptstolteroutfrequenciestowhichtheindividualis
thoughttobeoverlysensitive.Thesefrequenciesareselectedbasedonhearing
testsdonewithspecialaudioequipmentpriortoAIT.20 In order to accomplish
Section One: What Works and What Doesn’t?
261
change in listening and comprehension, the Tomatis approach consists of three
phases that 1) lter out low frequency sounds, leaving only high frequency
sounds which are said to “energize”thebrain, as well as recreate sounds from
withinthewomb;2)recreatesoundsfromafterbirth,and3)havetheindividual
read aloud.
The Berard and Tomatis approachesalsodifferwithrespecttofrequencyand
duration of training. While the Berard method recommends no more than ten
hours of AIT, administered over ten days in two, half hour sessions per day, the
Tomatis approach recommends much higher levels of AIT. There are two options
for intensity and duration in the Tomatis method. For individuals with autism,
it is recommended that they receive 150-200 hours of AIT over six to twelve
months. There is also a short course that can be administered which involves
two and one-half to three hours per day for ten to twelve days.
What else do I think?
The reported presence of side effects is an important issue in the use of AIT.
Researchisrequiredtoexaminewhetherornotthistrainingmethod creates any
side effects. Monville21 noted tantrums and aggression in ten percent of children,
while Link22 reported that one third of the children may have experienced seizures,
and that there was an increase in negative behavior and perseveration. In addition
to this, Link23 reports the possibility of AIT inducing seizures in individuals
diagnosed with Landau-Kleffner syndrome.
Auditory IntegrationTraining(AIT)isamethod of treatment for individuals with
autism which is used often, despite the distinct lack of supportive research. It
isofgreatnancialcosttoparentsandtheremaybethepossibilityofnegative
side effects. The abundance of anecdotal evidence on AIT, particularly the
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book, Sound of a Miracle: A Child’s Triumph over Autism,24 which purports
AIT as a cure for autism, has made AIT popular, despite the distinct lack of
methodologically sound data.
Would I try it on my child?
At this point I would not try AIT on my child. There is not enough good science
behind this treatment and I am somewhat concerned about the reported side
effects of aggression, tantrums, and seizures. In addition, the cost of using an
unproven treatment in time and money is a further factor in my decision not to
have my daughter undergo this treatment.Whenmydaughterwasrstdiagnosed
fourteen years ago, I did research AIT as a serious option because she seemed to
have very sensitive hearing and would be a candidate for this method. However,
once I researchedtheamountandqualityofscienticevidence for this method,
I decided to wait for more evidence. Now I’m still waiting; however, now there
have been a few well done studies which strongly support the contention that
AIT does not ameliorate the symptoms associated with autism.
What kind of study would I like to see the Auditory
Integration Training practitioners do?
I would like to see the Mudford et al.25 design replicated by Rimland and Edelson
(twoproponents of AIT)utilizingthesamemeasures for the dependent variable of
autismthatMudfordetal.(2000)used.Inaddition,thisreplication would need
to have psychologists with no relationship to AIT administer the various measures
used. If the results of the 2000 study were replicated, then parents would know
with more certainty that AIT is not an effective treatment for autism.
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263
Who else recommends for or against Auditory Integration
Training as a method for the treatment of autism?
There are many professionals and organizations recommending against AIT. In
a 1998 policy statement authored by the American Academy of Pediatrics, they
state that: “Although two investigations indicated AIT may help some children
with autism, as yet there are no good controlled studies to support its use. ... Until
further information is available, the use of these treatments [AIT] does not appear
warranted at this time, except within research protocols.”26 In addition, the New
York Department of Health issued a report on best practices for the treatment
of children with autism. Regarding Auditory Integration Training, they have
this to say: “The one study that met criteria for evidence about efcacyfound
no differences in children receiving auditory integration training and children
listeningtounmodiedmusic. Because of the lack of demonstrated efcacy
and the expense of the intervention, it is recommended that auditory integration
training not be used as an intervention for young children with autism.”27 Further,
the Association For Science in Autism treatment(ASAT)states:“Professionals
considering AIT should portray the method as experimental and should disclose
thisstatustokeydecisionmakersinuencingthechild’sintervention.”28
So you’re still on the horns of a dilemma?
If you are still wondering whether you should try Auditory Integration Training,
I suggest you read the Mudford article29 which critically reviews this treatment
in comprehensive detail. It is important to recognize that AIT, at this point, is
entirely experimentalandthatthescienticevidence is growing to support the
view that AIT is an ineffective treatment for autism.
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What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence to conclude
that Auditory Integration Training is an effective treatment for autism
Section One: What Works and What Doesn’t?
265
Endnotes for Auditory Integration Training
1 Berard, G. 1993. Hearing Equals Behavior. New Canaan, CT: Keats.
2 Link, H.M. 1997. “Auditory Integration Training(AIT): Sound therapy? Case Studies of
Three Boys With Autism Who Received AIT.” British Journal of Learning Disabilities. Vol.
25, pp. 106-110.
3Madell, J.R., and D.E. Rose. 1994. “Auditory Integration Training.” Face to Face, American
Speech-Language-Hearing Association, pp. 14-18.
4Brown, M.M. 1999. “Auditory Integration Training and Autism: Two Case Studies.” British
Journal of Occupational Therapy, Vol. 62, No. 1, pp. 13-18.
5Gillberg,C.,M.Johansson,S.Steffenburg,andO.Berlin.1997.“Auditory Integration Training
in Children With Autism. Brief ReportofanOpenPilotStudy.”Autism, Vol. 1, No. 1, pp. 97-
100.
6Rimland, B., and S.M. Edelson. 1994. “The Effects of Auditory Integration Training on Autism.”
American Journal of Speech Pathology, Vol. 5, pp. 16-23.
7Rimland, B., and S.M. Edelson. 1995. “A Pilot Study of Auditory Integration Training in Autism.”
Journal of Autism and Developmental Disorders, Vol. 25, No. 1, pp. 61-70.
8Bettison, S. 1996. “The Long-Term Effects of Auditory Training on Children With Autism.”
Journal of Autism and Developmental Disorders, Vol. 26, No. 3, pp. 361-374.
9Mudford, O.C. et al. 2000. “Auditory Integration Training for Children With Aut ism: No
BehavioralBenetsDetected.”American Journal on Mental Retardation, Vol. 105, No. 2, pp.
118-129.
10Zollweg, W. 1997. “The EfcacyofAuditory Integration Training: A Double Blind Study.”
American Journal of Audiology, Vol. 6, No. 3, pp. 39-47
11Rimland, B., and S.M. Edelson. 1995. “Brief Report: A Pilot Study of Auditory Integration
Training in Autism.”Journal of Autism and developmental Disorders, Vol. 25, No. 1, pp. 62-
69.
12Bettison,S.,(seen.8above).
13Rimland,B.,S.M.Edelson,(seen.11above).
14Link,H.M.,(seen.2above).
15Link,H.M.,(seen.2above).
16Zollweg,W.,(seen.10above).
17Mudford,O.C.etal.,(seen.9above).
18Mudford,O.C.etal.,(seen.9above).
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266
19Link,H.M.,(seen.2above).
20Link,H.M.,(seen.2above).
21Monville, D., and N. Nelson. 1994. Parental Perceptions of Change Following AIT for Autism.
Presented to the American speech-Language-HearingConference,NewOrleans.
22Link,H.M.(seen.2above).
23Link,H.M.(seen.2above).
24Stehli, A. 1991. The Sound of a Miracle: A Child’s Triumph Over Autism. New York:
Doubleday.
25Mudford,O.C.etal.,(seen.9above).
26Committee on Children with Disabilities. 1998. ”AuditoryIntegration Training and Facilitated
Communication for autism.”Pediatrics, Vol. 102, No. 2, p. 433.
27Guralnick, M. ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorder s, Assessment and Intervention for Young Children
(age0-3years).Albany(NY):NewYorkStateDepartmentofHealth,p.IV-63.
28Association for Science in Autism treatment(ASAT),www.asatonline.org/about_autism/autism_
info08.html,(accessedAug.19,2005).
29Mudford,O.C.etal.,(seen.9above).
Section One: What Works and What Doesn’t?
267
Miscellaneous Therapies: Craniosacral Therapy
What is Craniosacral Therapy?
Craniosacral Therapy is a technique whereby the practitioner softly touches
and manipulates the head of a person with autism. According to those who
practice Craniosacral Therapy, the manipulation of the head is done to release
restrictions in the Craniosacral system(CSS).Thetheory behind this therapy
isthatthepatientbenetsbecausethetreatment creates changes to the central
nervous system. The philosophy that accompanies the practice of Craniosacral
Therapy emphasizes natural alternative medicine rather than traditional western
medicine.Specically,thereisabeliefthatso-called“energycysts”developin
areas of prior physical trauma and/or emotional shock.1 In addition, cells and
organs are thought to have a consciousness and practitioners have the patient
communicate with the brain using imagery and dialogue.2 Explanations as to
why Craniosacral Therapy is thought to be effective for individuals with autism
are not well developed. The therapy does make claims that it can be used for
treatment as well as prevention of autism.3
What evidence do the practitioners have that this
really works?
Our extensive database searches found no peer-reviewed journal articles on
Craniosacral Therapy reporting outcome information on this treatment for autism.
The only facts available regarding the effects of this type of therapy are case
histories reported by Upledger who pioneered the use of this treatment. Based
on material generated by the Upledger Institute, it is reported that the use of
Craniosacral Therapy on infants acts in a preventative way for many childhood
disorders, including autism. However, there are no peer-reviewed studies as of
yet to support these claims. Despite the lack of peer-review, Craniosacral Therapy
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268
has generated much non-peer reviewed literature in the form of promotional and
teachingmaterials(overonehundredmonographs,newspaperarticles, newsletter
entries,adozenbooks,andtenvideotapes).
There has been one non-peer reviewed study examining the differences between
autistic individuals before and after the therapy. The researchers compared blood,
specicphysical characteristicsanddidahairmineral analysisofindividuals
with autism to typicallydevelopingindividuals.Whentheyfoundunspecied
abnormalities, they then used Craniosacral Therapy to treat and thereby correct
these supposed differences amongst the autistic subjects. The authors studied
twenty-veoutof fty-oneindividualsenrolledintheGenesseeIntermediate
School District Center for Autism. The most obvious awinthisresearch is that
these researchers do not establish the relevance of the physical, blood and hair
mineralabnormalitiesastheyspecicallyrelatetoautism. It has not yet been
determined that these abnormalities are characteristic, of or relevant to, autism.
Specically,theseresearchers do not assess whether these symptoms are related
to the various decitsandexcesseswhichcharacterizeautism and are used to
make the behavioral diagnosis of autism. In other words, did the lessening of
these purported abnormalities indeed improve the degree of functioning, the
behaviors, or the communication skills in the autistic individual? The researchers
donotaddressthiscentralquestion. In formal terms, the dependent variable of
autism is not operationalizedproperly(pleaseseeSectionTwoforadiscussion
on the operationalization of the dependentvariable).
What does the therapy actually look like?
Craniosacral Therapy addresses the craniosacral system in the human body,
includingthemembranesanduidsurroundingthespinalcord,brain, and the
skull, face and mouth bones, down to the tailbone.4 In Craniosacral Therapy the
Section One: What Works and What Doesn’t?
269
practitioner uses a light touch(denedas5gramsofpressureorless),around
theareadenedasthe“Craniosacralsystem.”
What else do I think?
There is no peer-reviewed, published data regarding how well (orif)Craniosacral
Therapy works and there is too little information regarding what is actually
supposed to happen as a result of this therapy. Data that does exist in the literature
with regards to Craniosacral Therapy and individuals with autism does not
include an evaluation of its use as a treatment for autism. It has only been used
as an intervention for certain physical symptoms, which are neither necessarily
a result of autism nor are symptoms that contribute to the diagnosis of autism.
This therapy does not address the serious language, social and play decits,orthe
behavioral excesses, such as self-stimulation, rigidities and ritualistic behaviors
often characteristic of autism.
Would I try it on my child?
I would not try this on my child because I have not seen any evidence that this
therapy could be effective in ameliorating the symptoms of autism. This is a
great example of a therapy backed only by theory, but no evidence whatsoever,
beingofferedup to parents (ataconsiderablecostperhour)asapurportedly
legitimate intervention.
What kind of study would I like to see the practitioners of
Craniosacral Therapy do?
There needs to be further research into the theory underlying the use of
Craniosacral Therapy for individuals with autism.Specically,researchers need
to use a controlled design to assess whether Craniosacral Therapy is effective
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270
inthereductionofthevariouswelldenedandgenerally-acceptedsymptoms
characteristic of autism. There needs to be double-blind, pre-and post testing
using commonly-accepted tests for autism and the researchers must not know
which children are in the experimental and control groups. In addition, before I
am convinced that Craniosacral Therapy works as a treatment for autism, I need
to see a well-designed study with outcome data published in an academic, peer-
reviewed journal and replicated, before recommending Craniosacral Therapy.
Who else recommends against Craniosacral Therapy as
a method for the treatment of autism?
There have not been any organizations or groups who have recommended
against this therapy for children with autism because Craniosacral Therapy is
not a commonly-used treatment for autism; however, when this therapy is used
on individuals with other conditions and diseases, Quackwatch recommends
against this treatment.5
So you’re still on the horns of a dilemma?
If you are still thinking of this therapy to lessen the degree of autism in your child,
I would suggest that you visit any reputable neurosurgeon to have him share his
medical opinion regarding the effectiveness of Craniosacral Therapy.
What’s the bottom line?
Based on the scientic research to date, there is no scientic evidence that
Craniosacral Therapy is an effective therapy for autism.
Section One: What Works and What Doesn’t?
271
Endnotes for Craniosacral Therapy
11999. For Continuing Education, Continuing Care. Palm Beach Gardens, FL: The Upledger
Institute, Inc., p. 4.
2(seen.1above),p.6.
3(seen.1above),p.5.
4(seen.1above),p.2.
5Barrett, S. “Craniosacral Therapy.”http://www.quackwatch.org/01QuackeryRelatedTopics/
cranial.html,(accessedFeb.13,2006).
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Section One: What Works and What Doesn’t?
273
Miscellaneous Therapies: Dolphin-assisted
Therapy
What is Dolphin-assisted Therapy?
Dolphin-assisted Therapy(DAT)isthepracticeofhavingpersonswithspecial
needs swim with dolphins. Practitioners of this therapy have differing opinions
on how the therapy method helps, whom it helps and what effects can be expected
from this therapy. We originally found two sources of information on this
intervention,onefrom“DolphinReef”inEilatIsrael,1 and the other from “Island
DolphinCare”basedinFlorida.2 Ourlatest search netted several different DAT
programs, including one in Crimea in the Ukraine.3
The concept of using dolphins as a treatment for autism came from the observation
of a diver in Israel, who observed that when people came to see the dolphins,
theyoftenexpressedmanyemotions(includinghappiness,excitementandtears
ofjoy).Thisledthedivertobelievethathumanexposuretodolphinsmaybea
therapeutic, emotional process for some people.
The practitionersinDolphinReef(Israel)claimthatDolphin-assisted Therapy
addresses some of the cognitive and emotional needs of the child. The cognitive
issues are addressed on the diving platform, where the child watches the dolphins
swim in the water, then feeds the dolphins and adjusts to the diving gear. Some
hand signals are often taught to the autistic person to communicate with the
dolphins. Then, when the child is ready and willing, he or she is moved into the
water with the dolphins. In the water, the child learns to interact with the dolphin.
The dolphin’s non-judgmental attitude toward the individual with special needs
is theorized to be extremely helpful in having the individual “accept himself or
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274
herself.”Practitioners believe that learning to socially interact with dolphins
will then generalize to improvement in social interaction with people.
The practitioners of Dolphin-assisted Therapy in Florida do not make the same
claims about the effects of this therapy as do the Israeli practitioners. The
Floridians propose that some changes may be seen in the child after therapy;
however, these changes are attributed to the child’s purported increase in self-
esteem, condenceandmotivation,2 as opposed to any healing effect of dolphins.
In fact, the Island Dolphin Care website states that, while some believe in these
healingproperties,thereisverylittlescienticevidence to support these beliefs.1
In addition to this, they state clearly that there may be little or no improvement for
children with behavioral problems, extreme fears or those who are moderately or
severely autistic or disabled. In addition to time in the water with the dolphins,
the Island Dolphin Care site creates a psycho-educational program for the child,
using behavioral and educational techniquesinaclassroomsetting.
What evidence do the practitioners have that this
really works?
There is no evidence that Dolphin-assisted Therapy is an effective intervention
for autism.Ourcomprehensivedatabase searches found four articles on DAT,
but only one Belgian article that attempts to measure the efcacyofDolphin-
assisted Therapy. This study evaluated whether Dolphin -assisted Therapy
enhanced the learning of autisticchildren,specicallymeasuringattentionand
motivation. Unfortunately, the study’s awsweresogreatthattheresearchers
themselves could not make any conclusions about whether dolphins had a
therapeutic effect on children with autism.4 Therefore, there are no published
studies with reliable outcome data to evaluate the effectiveness of Dolphin-
assisted Therapy for children with autism. In marked contrast, there is no
Section One: What Works and What Doesn’t?
275
shortage of non-peer reviewed information on DAT. In one television broadcast
on dolphin therapy(fundedbytheGovernmentofCanada)entitled,“TheBody,
InsideStories,”theaudienceistakentoEilat,Israel,whereasectionoftheRed
Seaiscordonedofftohouseseveraldolphins.Thelmproceedstoclaimthat
the treatment is very effective, not only for individuals with autism, but also for
those with other disorders. The documentary follows the treatment of a group
of adolescents and adults with autism who are brought down to Dolphin Reef
for DAT. The claim is made that individuals with autism can hear the sounds of
dolphins, that typically developing persons are unable to hear. These dolphin
“voices”arehypothesizedtodrawautisticpeopleoutoftheirisolatedworld.
Despite the observation that some individuals with autism seem to have more
sensitivity to sound, there is no research to suggest that individuals with autism
have the ability to hear dolphin sounds that others cannot hear. In addition, the
lmprovidesanecdotesofpeoplewhoclaimtohave directlybenettedfrom
the intervention(pleaserefertoSectionTwoforadiscussionoftheuseand
abuseofanecdotalinformation).TheclaimoftheIsraeliproponents of Dolphin-
assisted Therapyisthattheautisticindividualsweremore “relaxed”afterthe
intervention. In addition, dolphin therapy is claimed to be worthwhile because
1)itwillprovidemorecontactwithothers,and2)individualswithautism will
be happier, use more language and need less medication. There was no evidence
presented in the broadcast regarding these kinds of supposed gains, nor is there
any peer-reviewed, published literature which supports the notion that meaningful
outcomes result from Dolphin-assisted Therapy.
What does the therapy actually look like?
In Eilat, Dolphin-assisted Therapy involves three, four day sessions, of an
unspeciedduration. At Island Dolphin Care in Florida, therapy generally is
conductedfromoneto three weeks.Itcostsapproximately$2,000 USD per
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276
week,whichincludesvedolphinsessions and four classroom sessions. In both
these centers, the autistic person wearing a life jacket, is placed in the water. The
therapist helps the child become comfortable with the water and the dolphin.
With the help of the therapist, the child interacts with the dolphin and is given
rides on top of the dolphin as it swims around the pool.
What else do I think?
This type of “intervention” can be extremely appealing to parents who are
desperate for an effective intervention for their child. Most tempting about this
interventionisthatitpresentsitselfasa“quick-x”optionwhichsoundspleasant
and enjoyable for both the family and the affected child.
It is likely that many of the reported positive changes seen in the child after
Dolphin-assisted Therapy from Island Dolphin Care, may be attributable to
educational and behavioral techniquesusedonthechildandshowntotheparents,
rather than any healing properties of dolphins. Put simply, a dolphin ride may
be a very reinforcing experience to a child. To their credit, the Island Dolphin
Care website repeatedly denies that there are any miracle cures or healing that
occurs through the use of Dolphin-assisted Therapy. They emphasize that it is
not a medical treatment, and that no medical cures or changes in diagnoses have
been observed or should be expected from Dolphin-assisted Therapy.
Based on the fact that there is no evidence whatsoever to support this type of
therapy, I cannot seriously consider Dolphin-assisted Therapyasa“therapy”at
allforindividualsafictedwithautism. While this may be a great vacation spot
for families who have members with special needs, it should not be confused
with valid treatment for this serious disorder.
Section One: What Works and What Doesn’t?
277
Would I try it on my child?
I would not enroll my child in this therapy with the expectation of any progress.
If I thought my child would enjoy swimming with dolphins and I had the
extra cash for a holiday in sunny Israel or Florida, I would love to give her the
experience. However, I would not dignify the experience by using the term
therapy or treatment and, again, I would have no expectations for any measurable
improvement in her autism.
What kind of study would I like to see Dolphin Therapy
researchers do?
If the practitioners of this method make therapeutic claims regarding Dolphin-
Assisted Therapy, then I would expect to see research which meets the minimal
scienticcriteria for well designed studies. In addition, I would like to see the
Island Dolphin Care practitioners provide rigorous research supporting the
notion that their psycho-educational programming is worthwhile for families
of individuals with autism. It is possible that they are using standard, well-
established teaching techniques forchildren with autism. However, it is not
made clear from their promotional materials whether or not their educational
techniquesareinnovativeanduntested or based upon well-established educational
standards.
Who else recommends against Dolphin Assisted Therapy
as a method for the treatment of autism?
None of the professional or academic associations which evaluate treatment
claims have studied the claims made for Dolphin-assisted Therapy. I believe this
lack of interest is because this type of intervention is simply not taken seriously
by scientists in the eld of autism research or treatment. Moreover, no one
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278
sees it as a dangerous intervention, and therefore, it has been largely ignored.
A treatmentthatisquiteexpensive,butunproven,isnotgenerallyofconcern
tothe scienticcommunity,unlessitisactuallyharmfultothechild. Itmay,
however,beofconcerntothecommunityofparents(towhichIbelong)who
have to shell out large sums of money to have their child participate in unproven
treatments.
So you’re still on the horns of a dilemma?
Ourliterature search did not produce even a single, peer-reviewed article with
reliable data on this kind of therapy. Therefore, based on the information we’ve
provided in this section, it is up to the reader to decide whether experimenting
with Dolphin-assisted Therapy is worth the money and time.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence that Dolphin-assisted
Therapy is an effective treatment for individuals with autism.
Section One: What Works and What Doesn’t?
279
Endnotes for Dolphin-assisted Therapy
1DolphinReef,www.dolphinreef.co.il,(accessedFeb.16,2006).
2Island Dolphin Care, www.dolphinsplus.com/dolphin-therapy.htm,(accessedFeb.16,2006).
3Dolphin-assisted Therapy, www.dolphinassistedtherapy.com,(accessedFeb.16,2006).
4Servais, V. 1999. Some comments on context embodiment in zootherapy: The case of the
autidoljnproject.Anthrozoos, Vol. 12, pp. 5-15.
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Miscellaneous Therapies: Exercise Therapy
What is Exercise Therapy?
The use of exercise as an intervention for individuals with autism is based on the
theory that the physiological effects of exercise decrease some of the symptoms of
autism. Those who recommend this intervention believe that through exercise, the
body creates certain chemicals that help reduce self-stimulatory and rigid behavior
amongst people with autism. They hypothesize that physiological changes in the
brain caused by strenuous physical activity can help individuals with autism. The
result of these chemical changes, they maintain, is that stereotypic or repetitive
behavior decreases. Based on an area of research that looks at the effect of
physical exercise on motivation, attention, aggression and other emotions, these
researchers believe that exercise is an effective intervention which can target
many of these areas in people with autism.1
What evidence do the practitioners have that this
really works?
Our database searches netted forty-one entries on exercise and autism.* Of
those, nine peer-reviewed studies on exercise indicate initial improvement. All
of these studies demonstrate positive results,specicallyreporting decreases in
stereotypic or repetitive behaviors in subjects who underwent exercise therapy.
The following statisticalsignicancescores(pvalues)** were reported for three of
*There are many more articles which discuss the effects of exercise on individuals with various types of
developmental delays; however, these studies did not address autismspecically.
**In Rosenthal-Malek and Mitchell (1997), after exercise, the adolescent subjects exhibited less self-
stimulatory behaviors(plessthanorequalto.01and.001),gothigherscores on academic tests(p<.05),
and completed more of their workshop tasks(p<.01).2InElliottetal.(1994),theproblematic behaviors
oftheautisticadultsmeaningfullydecreasedafterthevigorousexercisecondition(p<.001).3 In Watters
andWatters(1980),self-stimulatory behaviors decreased after physicalexerciseaswell(p=.05).4
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the studies.InRosenthal-MalekandMitchell(1997),afterexercisetheadolescent
subjects exhibited less self-stimulatory behaviors, got higher scores on academic
tests, and completed more of their workshop tasks.2InElliottetal.(1994),the
problematic behaviors of the autistic adults meaningfully decreased after the
vigorous exercise condition.3 InWattersandWatters(1980),self-stimulatory
behaviors decreased after physical exercise, as well.4LevinsonandReid(1993),
foundthatrigorousexercise(jogging)diddecreasestereotypic behavior but that
the effect of exercise was not apparent one and one-half hours after exercise.
No effectswerefoundformildexercise(walking).5Allisonetal.(1991)found
thatexercise(jogging)andmedicationincombination,signicantlydecreased
aggression, better than exercise or medication alone in a single subject case design
(SSCD)involvinganadultautisticmalesubject.6 Using a SSCD, Celiberti et
al.(1997)foundthatexercisedidhavetheeffect of decreasing physical self-
stimulatory behavior.Ofnoteisthattheresearchers report sustained behavioral
changes more than forty minutes after jogging.7Kernetal.(1984,1982),also
report similar results from vigorous exercise (jogging). They found that it
decreased stereotypic behaviors and increased task-oriented behavior amongst
children with autism.8,9Powersetal.(1992)reported similar results using roller
skating, rather than jogging, as the form of exercise.10
On the whole, these studies were designed and executed quite well. Some
studies have observers who did not know which subject was in the experimental
or controlconditions.This“blind”procedure limited any bias that could come
from those researchers recording the results. In addition, as mentioned above,
three of the studies used statisticalsignicancescores(pvalues).Thep values in
these studies indicate statisticallysignicantlevelsofimprovement in common
negative autism behaviors, due to physicalexercise.Celibertietal.(1997)report
clinicallysignicantresults of exercise as well7(pleaseseeSectionTwofora
discussion regardingsignicance).
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A few of these studies measured behavior in a competent manner. They recorded a
comprehensive list of self-stimulatory behaviors of the children in the study. The
self-stimulatory behaviors were recorded for a short period of time on a schedule
(e.g.,forveminutesofeveryfteenminuteintervalbeforetheexerciseandthen
aftertheexercise).Thisobjectivemeasureisextremelyhelpfultodeterminethe
true outcome of the therapy.
Most of the research on exercise employs Single Subject Research Designs where
a base-line is measured, and then the treatment is given and withdrawn, given
and withdrawn. In the case where the behavior is easy to observe and measure,
an SSRDisappropriate(pleaseseeSectionTwoforadiscussiononSSRD).
Collectively, the numbers of subjects in this area of the literature is very small
(thirty-sixpersonswithautismoverathirty-yearperiod).Inaddition,mostof
the studies were conducted in the early 1990s. The largest study used seven
subjects in a design where each person experienced both conditions repeatedly.
This study was designed to compare subjects with themselves in both the control
and experimental conditions. The results would give us more condence if
the number of children in the studies was much higher and the research more
current.
What does the therapy actually look like?
In every study, subjects participated in some kind of physical activity. In most
of the studies, the children or adolescents jogged anywhere from eight to twenty
minutes per exercise session. In other studies, the subjects used a treadmill
moving four miles per hour or exercised using rollerskates. It is important to
keep in mind that the physical activity described was used for research purposes
only and was not necessarily chosen because it was the best form of exercise.
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What else do I think?
The theory underlying exercise therapy for individuals with autism intuitively
makes sense. We know the benets of cardiovascular exercise for everyone.
For individuals with autism, exercise may also serve to decrease many of the
stereotypic decitsandexcessesassociatedwithautism. In other words, the well-
documented physiological changes associated with exercise for the population
at large may also have the effect of decreasing observed stereotypic behaviors
in individuals with autism.11
Exercise therapy appears to address the inherent differences between the amount
of energy expended by some children with autism and their typically developing
peers. Typical children seem to spend hours a day engaged in nonstop action,
while many autistic children are either not active, or they spend hours engaging
in activities which may not be as physically strenuous. Engaging the child in
appropriate cardiovascular activity seems to temporarily replace inappropriate
behavior, while maintaining or increasing the amount of energy the child
expends.
Although exercise seems to have an effect, it is important to remember that the
effects of physical exercise on self-stimulatory behaviors seem to be short term
only.Forbenetstobemaintained,theautisticperson may need to exercise
directly before the academic routine. In addition, no studies have been done to
date on the satiation effects of exercise, and the consequencesthatsatiationmight
have on levels of stereotypic or repetitive behavior. In other words, as the child
becomesmoret,dolevelsofexercisehavetobecontinuallyincreasedtoget
the same effect or can levels of physical exercise remain the same or decrease,
yetstillbenetthechildbymaintainingthedecreasesinstereotypic behavior?
There is insufcient research at present to answer that question. I am also
concerned that the amount of research done on exercise has actually decreased.
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There is still much we do not know about how or why exercise decreases
stereotypic and aggressive behavior for individuals with autism. Based on the
amount of research conducted and the results of that research, we are not in a good
position to decide whether it is worth spending therapeutic time on exercise.
Would I try it on my child?
Thisisadifcultquestion for me to answer. I think the data is clear that vigorous
activity does have a suppressing effect on self-stimulatory behavior. I also know
that exercise will not harm my daughter in any way. In fact, it may increase her
health and physical well-being. That said, my child’s self-stimulatory behavior
has diminished considerably over the years; therefore, I do not see her as a
good candidate for this type of therapy. If, however, the stereotypic behavior
were interfering with her learning, I might have her engage in exercise, and
schedule the therapy immediately before she had to sit down and concentrate.
I would, however, take very good data(objectivemeasures)tomakesurethat
her stereotypic behaviors did indeed diminish after exercise, since it would be
a waste of time if we did not see meaningful results. The biggest hurdle to this
kind of therapyisthatittakestimeanddoesnotseemtobelong-lasting(although
more research needs to be conducted on the long term effects).Atthispoint,
based on what little we do know about this method, it makes little sense to do
the therapy with the child on a regular basis unless the therapy helps the child
focus on an activity which immediately follows the Exercise Therapy. Hopefully,
with additional research into Exercise Therapy, we will be able to know how to
use the therapy to get the best results in the least amount of time.
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What kind of study would I like to see Exercise Therapy
researchers do?
As I’ve suggested earlier, more research into this therapy is required, using
much larger sample sizes. I would like to see the study by Rosenthal-Malek
andMitchell(1997),inwhich they measured self-stimulatory behavior rates,
academic performance and work completion, replicated using a Between-Within
Subject Design with a larger number of children, and done over a longer period
of time. These researcherscouldthenbetterdeterminethelevelandfrequency
of exercise necessary. We would be in a much better position to use this therapy
withpeopleafictedwithautism.
In addition, an increased understanding into the use of exercise to control
stereotypic behaviorsmayanswerthequestion of why exercise lowers levels
of stereotypic behavior. We need to know the physiology behind the effect of
a decrease in self-stimulatory behavior; what is the body chemistry associated
with Exercise Therapy that is behind the behavioral effects we observe. An
understanding of this may lead to an understanding of the cause of stereotypic
behavior in people with autism, and may help researchers understand the cause
of autism and develop effective drugs to treat the disorder.
Who else recommends for or against Exercise Therapy
as a method for the treatment of autism?
For the most part, this area has been ignored by most practitioners and researchers.
There is no money to be made on this kind of research(intheshortterm),the
research does not demonstrate the effects to be long lasting and there is no
danger to exercise; therefore, neither much concern nor much interest has been
voiced about exercise therapy from either the community of autism researchers
or parents of children with autism.
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So you’re still on the horns of a dilemma?
If you would like to incorporate exercise into your child’s life because you
thinkitmaybehealthyforhim,that’sne.However,ifyouareincorporating
exercise because you think it will be therapeutic for autism, then I would have a
behaviorist set up a program and monitor whether, indeed, the moderate exercise
is having an effect on your child’s behavior. Without setting up an objective way
to measure whether exercise is helping, you may end up doing something that
may not actually be bearing any fruit and may actually be wasting your child’s
therapeutic time, when another more valuable therapy could be administered to
better effect.
What’s the bottom line?
Based on the scientic research to date, there is some evidence that exercise
therapy is effective for temporarily decreasing stereotypic behavior in people
with autism; however, there is no evidence to show that Exercise Therapy has
any long term effect in ameliorating the symptoms associated with autism.
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Endnotes for Exercise Therapy
1Kern, L. et al. 1982. “The effects of Physical Exercise on Self-Stimulation and Appropriate
Responding in AutisticChildren.” Journal of Autism and Developmental Disorders, Vol. 12,
No. 4, pp. 399-419.
2Rosenthal, M.A., and M. Stella. 1997. “Brief Report: The Effects of Exercise on the Self-
Stimulatory Behaviors and Positive Responding of Adolescents With Autism.”Journal of Autism
and Developmental Disorders, Vol. 7, No. 2, pp. 193-202.
3Elliott,R.O.etal.1994.“Vigorous,AerobicExerciseVersusGeneralMotorTrainingActivities:
Effects on Maladaptive and Stereotypic Behaviors of Adults With Both Autism and Mental
Retardation.”Journal of Autism and developmental Disorders, Vol. 24, No. 5, pp. 565-576.
4Watters, R.G., and W.E. Watters. 1980. “Decreasing Self-Stimulatory Behavior With Physical
ExerciseinaGroupofautisticBoys.”Journal of Autism and Developmental Disorders, Vol.
10, No. 4, pp. 379-387.
5Levinson, L.J., and G. Reid. 1993. “The Effects of Exercise Intensity on the Stereotypic
Behaviors of Individuals With Autism.”Adapted.Physical Activity Quarterly, Vol. 10, No. 3,
pp. 255-268.
6Allison, D.B., V.C. Basile, and R.B. MacDonald. 1991. “Brief Report: Comparative Effects of
Antecedent Exercise and Lorazepam n the Aggressive BehaviorofanAutisticMan.” Journal
of Autism and Developmental Disorders, Vol. 21, No. 1, pp. 89-95.
7Celiberti, D.A. et al. 1997. “The Differential and Temporal Effects of Antecedent Exercise on
the Self-Stimulatory Behavior of a Child With Autism.”Research in Developmental Disabilities,
Vol. 18, No. 2, pp. 139-150.
8Kern,L,etal.1984.“TheInuenceofVigorousVersusMildExerciseonAutisticStereotyped
Behaviors.”Journal of Autism and Developmental Disorders, Vol. 14, No. 1, pp. 57-67.
9Kern,L.etal.,(seen.8above).
10Powers, S., S. Thibadeau, and K. Rose. 1992. “Antecedent Exercise and its Effects on Self-
Stimulation.”Behavioral Residential Treatment, Vol. 7, No. 1, pp. 15-22.
11Quill, K., S. Gurry, and A. Larkin. 1989. “Daily Life therapy: A Japanese Model for Educating
Children With Autism.”Journal of Autism and Developmental Disorders, Vol. 19, No. 4, pp.
625-635.
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Miscellaneous Therapies: Facilitated
Communication Training
What is Facilitated Communication?
Facilitated Communication(FC)isatechniquewhichusesphysicalprompting to
help individuals with developmental disabilities(includingautism)communicate.
ThewomanwhorstdevelopedFC, Rosemary Crossley, designed this method
for people who had little or no control of their muscles and, therefore, could
notcommunicate.Helpers(termed“facilitators”)physicallyhelpapersonuse
akeyboardorletterboardbyholdingtheirarm,forearmorwristinaspecic
way above a communication board. The hand-over-hand or physical prompting
is then supposed to be faded gradually, leaving the person to communicate by
him or herself; however, many people using FC are never able to communicate
independently and need the services of a facilitator permanently. Those who
use FC claim that people with many disabilities(includingautism)mayhave
advanced literary skills, along with well-developed cognitive skills. In other
words, they believe that people with autism are smart and able to communicate
at a high level.1 In order to bring out their higher level thoughts and ideas,
people who use FC believe that these disabled people need someone to help them
communicate. Although independent typing is seen as an eventual goal to work
towards,manydocontinuetorequirethehelpofthefacilitator and are never able
to have the facilitation eliminated. It is important to understand that the claims
made by those who developed FC, were originally made about individuals who
did not have good muscle control(peoplesufferingfromneuromotordisabilities
such as cerebralpalsy).Themethod and its claims were later applied to persons
with autism.
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What evidence do the practitioners have that this
really works?
OurliteraturesearchuncoveredoverftyarticlesonFacilitated Communication.
This is one of the most controversial treatments in the eldof autism. After
excluding the literature reviews, theoretical pieces, commentary and replies to
editors(therewereovertwodozen!),therearethirty* articles which presented
data on Facilitated Communication, showing that FC is not an effective treatment
for autism. All of these articles are published in peer-reviewed journals and some
of these articles(whichwewillspeakaboutlater)areverywelldone,following
the rules of the scienticmethod.However,inscienticterms,the theory of
Facilitated Communication hasbeenfalsied byno less thanthirty different
studies. There are a number of articles which present data to show that FC is
purportedly effective; however, most of this data is not presented in peer-reviewed
journals, but rather, in unpublished papers,31 books,32,33,34 internet sites,35,36 and
letters to the editor.37 In addition, there is a personal account or narrative written
ostensibly by a person with autism who independently types but who claims
to have learned these typing skills through Facilitated Communication.38 The
data are presented through case studies, surveys, or qualitativestudies which
suffer from a lack of experimental controls and often do not refer to autism
specicallyorexclusively.39,40,41,42,43,44,45 After separating these types of papers
from those which actually do attempt to use science to test whether Facilitated
Communication works, there are only seven peer-reviewed journal articles that
present data to support the use of FC.46,47,48,49,50,51,52 After evaluating these articles,
*2Bebko et al., 1996; 3Beck et al. 1996; 4Bomba et al. 1996; 5Burgess et al. 1998; 6Duchan, 1999; 7Eberlin
et al. 1993; 8Edelson et al. 1998; 9Cabay, 1994; 10Hirshoren et al. 1995; 11Kerrin et al. 1998; 12Kezuka,
1997; 13Montee et al. 1995; 14Moore et al. 1993a; 15Moore et al. 1993b; 16Myles et al. 1996a; 17Myles
et al. 1996b; 18Myles et al. 1994; 19Oswald,1994; 20Perry et al. 1993; 21Perry et al. 1998; 22Regal et al.
1994; 23Simon et al. 1994; 24Simpson et al. 1995; 25Smith et al. 1993; 26Smith et al. 1994; 27Szempruch
et al. 1993; 28Vazquez,1994; 29Vazquez,1995; 30Wheeler et al. 1993.
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Iamquitecondentinconcludingthatthereisinsufcientevidence to support
the use of FCforindividualsafictedwithautism. Although there are several
studies which report positive results, there is much more compelling evidence
that FC is not effective. In science, the burden is on researchers to demonstrate
a causal relationship. Each of the following studies attempts to do this, yet all
have limitations.
Olney(2001),reports positive results in a within-subject designed study with
nine subjects(sixofwhomhaveanautism spectrum disorder),sixty-sixpercent
of whom could type independently. This study reports that the subjects did
better when facilitated by a facilitatorinthe“blind”condition,comparedtothe
unfacilitated condition. There are a few awsinthisstudy, the major one being
that commercially available computer games were used in the blind conditions.
We do not know how familiar either the subjects or the facilitators were with these
computer games. The study was done between 1997 and 2001, and published
in 2001, and the vast majority of those computer games were introduced to the
market in the late 1980s. That is problematic because the facilitator may also
havebeenfamiliarwiththesequencing(andanswers)ofsomeofthegames.
As well, the subjects(mostofwhomcouldtypeindependently)mayalsohave
memorized some of the answers and used the facilitator as a prompt to
higher than when typing independently. Another awinthestudy is that from
thersttothelastfacilitated session, nine months elapsed. During this time,
the facilitators and the subjects could have gained experience elsewhere with the
computer games. These researchers would have been well-advised to simply
use the card stimulus techniqueutilizedbythosedemonstratingthatFC is not
effective, as in this way, the experimenter(whocannotbeinanywayinvested
in the outcome of the study)hasfullcontrol of the unknown stimulus(whichin
thiscasecouldbeawordonanindexcard).
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In a single-subject case design, Olgetreeetal.(1993),foundthatachildreceived
a score of zero out of eight responses in a matching game that was intended to
validate FC. The play condition of the study did not successfully validate FC
either. The researchers made positive conclusions regarding FC, even though
they report,“itistheseauthors’opinionthatthereis notsufcientevidence to
suggest that L.B. [the child] used FC independently in either playcontext.”53
In yet another single-subject case design, Weissetal.(1996),tested a thirteen-
year-old boy with autism to attempt to validate FC. Although this study is one of
the strongest in the literature providing evidence that FC is effective with some
people, it also suffers from control issues. First, the experimenter reads the story
out loud and types the story into the word processor in view of the child. Then
the experimenter facilitates for the child. The child does respond correctly to
somequestions, and inaccurately to others; however, the experimenter knows
the story, so any accurate response could be attributed to the experimenter. In
the third phase, the facilitator is supposedly uninformed; however, we have no
description of how that is assured. That said, this study is the strongest case study
in the literature,butsofarhasnotbeenreplicated(althoughovertenyearshave
elapsed since the original studywasdone).
Another studydonebySheehanetal.(1996),hadthreepersonswithautism and
mental retardation use FC in an attempt to validate the method. They claim that
all three subjects did communicate novel information to a naive facilitator. This
study also has a few shortcomings. First, the naive facilitator was in the room
with the experimenter who presented the original information: “During this
period, the naive facilitator who had presented the stimuli to the facilitated speaker
offered encouragement, redirection,feedbackandaskedclarifyingquestions of
thespeaker.”54 This kind of cueing is a variable which could confound the entire
experiment. Second, one of the subjects could type independently, but at a lower
level of literacy. They describe him as taking the facilitator’s hand for more
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complexthoughts.Oneexplanation for the difference regarding information this
subject knows, but refuses to type independently, could be a compliance issue,
ratherthanaknowledgeissue(particularlywithinformationtowhichheresponds
verbally).Third,theamountofunknowninformationwas extremelylowfor
all subjects(averageofoneunknownpieceofinformationcommunicatedper
session over three sessions).Theonesubjectwhocommunicatedanaverageof
twelve pieces of information per session had more independent communicative
ability than the others; therefore, he may have indeed been communicating with
the help of prompting, which should be faded. Either way, this is not strong
evidence for FC. Even if we take at face value that some true communication
occurred(which appears doubtful),inthebest-case scenario, one small piece
ofinformationeverysixminutesisinefcient.Intheworst-casescenario,one
piece of novel information per session(whichmaybeanhourinlength)ishighly
inefcient.Anotherstudy often touted as lending support for FC is Vazquez
(1994);however,inher1995study, she clearly states: “These results are consistent
with the vast majority of the controlled validation studies to date indicating that
typed messages attributed to nonspeaking persons with autism originate solely
from the facilitator...”55
The largest study done on FC, that reports success with FC, is Cardinal et al.
(1996).Thisstudy also suffers from several serious aws,threeofwhichneedto
be highlighted. First, in one study which shows success with FC, only seventeen
of the forty-three people in the study wereautistic. Otherdiagnoses include
Cerebral Palsy, Mental Retardation, Down Syndrome and other developmental
disabilities. Unfortunately, participants’ results were not reported based on
diagnosis.Therefore,itisimpossibletoknowwhichgroupofpeoplebenetted
from FC. Theoretically, other disabled persons, particularly those with physical
disabilities such as CerebralPalsy,couldbenetfromtheuseofFC since they have
severe muscle control difcultiesandmaybeunabletotypeindependently.
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The participation in the study of children without autism may account for any
success reported from this study,(althoughitisoutsidethescopeofthisbook
to make any conclusions regarding the effectiveness of FC for individuals with
other disabilities).Second,thetaskgiventothesubjects in this study was to type
onesimpleword,ashedtothemoutofapossibleonehundredwords.These
one hundred words are all very basic. In my opinion, typing a single word out
of a list of one hundred simple words does not demonstrate intelligence or high
level communicative abilities. Moreover, the authors of the study which showed
success using FC, mention that the subjects received higher scores without a
facilitator after they had been taught with the facilitatorthanwhentheyrstwere
scored without a facilitator. In other words, after learning the words, the subjects’
scores actually improved. Even the authors observed that the subjects learned
through facilitation and were able to type some correct answers independently.
If this observation by the authors of this study is correct, then why is facilitation
necessary at all? Why don’t the facilitators just teach the students with autism
howtotypesimplewordsthatthestudentsalreadyknowonakeyboard(such
as the words used in the study)?
The ability to type could be taught using words already known by autistic students,
using a variety of promptsfromobtrusive(suchasafullphysicalprompt),to
unobtrusive(suchasanonphysicalmodelingprompt)toaneventualfadeoutof
all prompts. In this way, everyone can be sure that the autistic person is indeed
communicating thoughts at his/her level of communicative ability, with no
possibility of facilitatorinuence.Withoutrequiringfullpromptfading,itcan
be convincingly argued that the autistic person will never be able to communicate
on his or her own.
Over two dozen well-executed studies show that once the inuence of the
facilitator is properlycontrolledinrstrateresearch(usingavarietyoftechniques),
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people employing FCshowthattheyarenotabletocommunicatesignicantly
better with this method than if they were simply typing on their own. The
best studies use three conditions: facilitated; non-facilitated, and distractor(as
illustratedinWheeleretal.1993).Inthefacilitated condition, the autistic person
is shown a picture on a card but the facilitator is not. Then the subject is asked to
identify the picture, through the use of FC. The non-facilitated condition uses the
same procedure, except the autistic person has to type the answer independently.
In the distractor condition, both the subject and facilitator receive their own
cards, which are the same for half of the time and different for the other half of
the time. This experimental design is very effective in demonstrating that the
facilitator is doing the communicating, not the autistic person. The study design
is elegant because it uses easy stimuli, gives the autistic person an opportunity
to show his cognitive and independent typing skills, and catches the facilitator
in the act of doing the communicating, instead of the autistic person.
In conclusion, the vast majority of the studies in the literature on Facilitated
Communication clearly show that FC is ineffective in experimental trials where
the facilitatordidnotknowthequestion asked to the person with autism, and
therefore, could not help the person answer correctly . In other words, the success
seen in FC is a direct result of the facilitator guiding the autistic person.
What does the therapy actually look like?
The person with autism sits in a chair at a desk and the facilitator takes his or
her arm and helps reach towards the keyboard, often above the area where the
personistotype.Theautisticpersonisthenaskedaquestion or shown a card,
and is guided by the facilitator.Generallyusingonenger,theautisticperson
types the answer.
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What else do I think?
The fact that the vast majority of controlled studiesndnoresults supporting
Facilitated Communication, does not seem to trouble supporters of FC. They
criticize the studies in two ways. First, they see the experiments as being too
“over-controlling.”56 Put simply, they think that there is too much pressure on
the autistic person to perform and as a result, the subject does not cooperate. I
believethattherstcriticism is unfounded as in many of the studies reviewed,
the children knew their facilitators prior to the study.3,4,16,22,23,24,26 Also, in many
of these studies the setting for the experiment was comfortable and relaxed in
the child’s regular school setting. To avoid possible anxiety, one experiment
was conducted in the child’s home.3 The second criticism has to do with what
the FC supporters call “one-place-in-time experiments.”Heretheyclaimthat
the FC users need more practice than the testing condition allows. I do not
accept the second criticismasvalidbecauseinveofthestudies reviewed, the
children had a reasonable amount of experience with FC before the data was
collected(e.g.,Vazquez1994–oneyear;Bombaetal.1996–tenweeksofdaily
individualized instruction; Beck et al. 1996 – six months to two years; Eberlin
et al. 1993 – twenty hours of FCtraining,andSimonetal.1994–vetothirteen
monthsexperience).
Many FC researchersbelievethatitisinappropriatetousequantitativescientic
methods to test Facilitated Communication.Theyprefer qualitative methods
because they believe that the environment will affect the outcome of the study.
Unfortunately,qualitativemethods are very unreliable when trying to test whether
a techniqueisscienticallyvalid.Theresponsibilitylieswiththeprofessionals
who recommend a particular method to come up with an objective way to test
the effectiveness of their intervention method. To this point, the Facilitated
Communication researchers have not suggested a way to test FC objectively.
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This rejection of the scienticmethod(withallofitstoolsofempiricism)isa
redag.Mostofthe studies that found no results when testing FC did try to
createascientic study in an environment where the autistic students would
feel comfortable and able to do their best. In my opinion, the fact that not one
of their relatively well-designed studies found FCusefulisasignicantnding
and one upon which we can reasonably base conclusions.
I cannot recommend the use of Facilitated Communication for individuals with
autism, due to the overwhelming evidence that the facilitatorisinuencingthe
answers that are being attributed to the autistic person. In addition, it is important
to realize that communication problems in people with autism generally have
more to do with the actual understanding and use of language, not a physical
inability to communicate. As a result, FC does not address the underlying
communicationdecitsfacingindividualswithautism. Before typing a clear,
coherent sentence, most children with autismrstneedtobetaughttouseand
comprehend language.Oneofthecriticisms leveled against those who do not
believe the claims made by FC practitioners is the assumption that if one cannot
communicate, then one must be mentally retarded.57 I do not share this belief;
autism is characterized by a profound difculty to communicate. In other
words, a very bright child with autism may have no ability to communicate
(untiltaught).Thatdoesnotmeanthatheorsheadditionallyhasadiagnosisof
mental retardation.
Unfortunately, many negative consequenceshaveresultedfromtheinappropriate
use of FC on children and youth with autism. False reports of physical and
sexualabusehavesurfaced,duetotheinuenceofthefacilitator on the message
ostensibly typed by the autistic person. These very serious accusations have
caused much harm for families and caretakers. Unfounded allegations of abuse
(over sixty legal cases)58 are yet another example of what can happen when
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parents of children with autism put too much faith in the “professionals”without
critically evaluating what these professionalsareoffering.Onceagain,thisis
why we parents must let science be our guide.
Would I try it on my child?
Absolutely not. My autistic child does not need to be guided on a typewriter to
type. In fact, she touch types by herself. I was pleased when we taught her to
type independently as this is another means for her to express herself. I should
mention that her communication and cognitive skills are completely in-sync
with her abilitytopointtoandanswerquestions on an IQ test. Although she is
marginally more articulate in writing or typing than speaking, her communication
skillsarenotsignicantlymorecomplexwhenshetypes.Whenmydaughter
was very young and did not know how to communicate at all, I did not try FC
withherfortworeasons:1)thereisnoscience behind the method and much
evidence showing that it is ineffective;2)itdidnotmakesensetomethatan
autistic child who does not understand language, could suddenly learn how
to communicate through a keyboard as long as a facilitator was present, but
notwhen she wasonher own, and3)when too muchpoweris giventothe
“professionals”whohave“special”powerstocommunicatewiththechild,the
parent is inadvertently putting the child at risk, as happened many times in the
history of FC. As parents, we are desperate; remember, the road to hell was paved
with good intentions. There are many uninformed people who regularly attribute
high level language skills to nonverbal children with autism. It is extremely
unlikely that without having been taught high-level skills, the child could have
learned these skills on his or her own. Autism is a condition characterized by
difcultyincommunication. My child has learned many of the skills she needs
to communicate and uses those skillsregularly; however,she acquiredthese
skills through a lot of hard work on her part. I have also met many nonverbal
Section One: What Works and What Doesn’t?
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children who use either a picture communication system or a computer to type
independently with great effect. However, all these children worked hard to
learn enough language to communicate.
What kind of study would I like to see the FC people do?
At this point, there is enough evidence for us to know that FC is not effective
for children with autism. Therefore, it is highly unlikely that the FC people
could design a study using rigorous science and get positive results. Reputable
scientists have been studying this method for over ten years and have not yet
found evidence that the techniqueworks.Inshort,IwouldencouragetheFC
practitioners to change their focus from facilitated communication to teaching
independent communication for children with autism through a keyboard or
similar device. No one would think twice about a teacher using hand-over-hand
prompts to teach a child any skill, as long as the prompts are faded in a timely
fashion, with the understanding that without independence, the child does not
truly possess the skill.
For those children with bothautismandseveregrossornemotordifculty(which
is not a primary characteristic of autism),thefacilitator must be mechanical in
nature(amechanicalrest).Edelsonetal.(1998)introducedsuchamechanism
and found that with a mechanical hand-support device that did not include any
human facilitation, six autistic individuals who had extensive experience with
Facilitated Communication, were not able to communicate in any meaningful
way.Clearlyinthiscase,thegrossandnemotorissueswerenotthereason
that the autistic subjects could not communicate independently. In short, there
shouldbenohumaninuenceinFacilitated Communication, because it has been
shownbyBurgessetal.(1998)howeventhemostconscientiousfacilitator can
inadvertentlyleadthechildbyengaginginwhattheyterm“automaticwriting”
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(also observed amongst those in a hypnotic state, or those using an Ouija
Board).59Kezuka(1997)alsoobservedthesamephenomenon.Anadditional
reason to make sure that the child is independently communicating through an
augmentativedevice(ifneeded)isbecauseithasbeenshown60 that educators and
therapists working with children with autism using Facilitated Communication
donothavesufcientunderstandingofscienticvalidity.Theyalsohavelittle
faith in the scienticmethod61 and believe that these children are much more
capable than their behavior and other measures indicate.62
Who else recommends against Facilitated Communication
as a method for the treatment of autism?
What’s very interesting about the FC controversy is that there is an unprecedented
number of reputable autism researchers who have jumped into the controversy
and have either done studies which disprove the method or have written
commentary repudiating the method. As well, there is a long line of reputable
organizations which recommend against FC. In 1993, the American Academy
of Child and Adolescent Psychiatry developed a policy statement also endorsed
by the American Academy of Pediatrics, regarding Facilitated Communication.
They state: “Studies have repeatedly demonstrated that FCisnotascientically
valid techniqueforindividualswithautism or mental retardation. In particular,
informationobtainedvia[FC]shouldnotbeusedtoconrmordenyallegations
of abuse or to make diagnostic or treatmentdecisions.”63 Their position was
updated in 1997. In 1998, the American Academy of Pediatrics released this
policy statement: “In the case of FC,therearegoodscienticdata showing it
to be ineffective. Moreover, as noted before, the potential for harm does exist,
particularly if unsubstantiated allegations of abuse occur using FC.”64 The
American Speech-Language-Hearing Association also recommends against
Facilitated Communication. They state: “... experiment investigations have
not only failed to validate facilitated communication, they have also repeatedly
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301
unwittingly authored messages for communicators. Authorship issues continue
to be a major concern of qualitative as well as experimental research.”65 In
addition, in 1999, the New York State Department of Health issued an excellent
report on best practices for the treatment of autism in young children. Regarding
Facilitated Communication, they state: “Because of the lack of evidence
for efcacy and possible serious harm of using facilitated communication,
it is strongly recommended that facilitated communication not be used as an
intervention method in young children with autism”66 [emphasis added]. Since
then, the Association for Science in AutismTreatment(ASAT)hasjoinedagainst
FC. They state: “Accumulated peer-reviewed, empirically-based research
studies have not supported the effectiveness of facilitated communication.
Equallyimportant,theresearch has substantiated the potentialforgreatharm.”67
Quackwatch also has much to say about FC.Theystate:“...manyscientic
studies have demonstrated that the procedure is not valid because the outcome
is actually determined by the facilitator.”68
So you’re still on the horns of a dilemma?
If you are still thinking about this form of intervention for your child, I strongly
urge you to read Jacobson et al. (2005), which devotes an entire chapter to
this unsubstantiated treatment and presents the entire history of Facilitated
Communication. This article will give you further background which you
may need to make an informed choice. Remember, it was through this method
that false allegations were made by facilitators that parents were abusing their
children. These children were actually taken away from their families until the
courts got involved and protected the families from false allegations! Due to the
horrendous history involving Facilitated Communication and the courts, there
are many articles written on the harm of relying on Facilitated Communication
as a form of accurate communication from children with autism.69,70,71,72,73,74,75
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I strongly suggest that prior to adopting FC as a communication device for your
child, that you read the seven articles pertaining to FC and the history of false
allegations of abuse.
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence that Facilitated
Communication is an effective treatment for individuals with autism. It also
carries risk for parents or guardians of the child with autism.
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303
Endnotes for Facilitated Communication
1Borthwick, C., and R. Crossley. 1999. “LanguageandRetardation.”Psycoloquy, Vol. 10, p.
38.
2Bebko, J.M., A. Perry, and S. Bryson. 1996. “Multiple Method Validation Study of Facilitated
Communication: II. Individual Differences and Subgroup Results.” Journal of Autism and
Developmental Disorders, Vol. 26, No. 1, pp. 19-43.
3Beck, A.R., C.M. Pirovano. “Facilitated Communicators’ Performance on a Task of Receptive
Language.”Journal of Autism and Developmental Disorders, 1996,26(5),pp.497-513.
4Bomba,C., L.O’Donnell,C. Markowitz,andD.L. Homes.1996.“Evaluating theImpactof
Facilitated Communication on the Communicative Competence of Fourteen Students with
Autism.”Journal of Autism and Developmental Disorders, Vol. 26, No. 1, pp. 43-59.
5Burgess, C.A., I. Kirsch, H. Shane, K.L. Niederauer, S.M. Graham and A. Bacon. 1998.
“Facilitated Communication As An Ideomotor Response.” American Psychological Society,
1998, Vol. 9, No. 1, pp. 71-74.
6Duchan, J.F. 1999. “Views of Facilitated Communication.What’sthepoint?”Language, Speech
and Hearing Services in Schools, Vol. 30, pp. 401-407.
7Eberlin, M., G. McConnachie, S. Ibel and L. Volpe. 1993. “Facilitated Communication: A
FailuretoReplicatethePhenomenon.”Journal of Autism and Developmental Disorders, Vol.
23, No. 3, pp. 507-529.
8Edelson, S.M., B. Rimland, C.L. Berger, and D. Billings. 1998. “Evaluation of a Mechanical
Hand Support for Facilitated Communication.”Journal of Autism and Developmental Disorders,
Vol. 28, No. 2, pp. 153-157.
9Cabay, M. 1994. “Brief Report: A Controlled Evaluation of Facilitated Communication Using
Open-endedandFill-inQuestions.”Journal of Autism and Developmental Disorders, Vol. 24,
No. 4, pp. 517-527.
10Hirshorn, A., and J. Gregory. 1995. “Further Negative Findings on Facilitated Communications.”
Psychology in the Schools, Vol. 32, No. 2, pp. 109-113.
11Kerrin, R.G., J.Y. Murdock, W.R. Sharpton, and N. Jones. 1998. “Who’s Doing the Pointing?
Investigating Facilitated Communication in a Classroom Setting with Students with Autism.”
Focus on Autism and Other Developmental Disabilities, Vol. 13, No. 2, pp. 73-79.
12Kezuka, E. 1997. “The Role of Touch in Facilitated Communication.”Journal of Autism and
Developmental Disorders, Vol. 27, No. 5, pp. 571-593.
13Montee, B.B., and R.G. Miltenberger. 1995. “An Experimental Analysis of Facilitated
Communication.”Journal of Applied Behavior Analysis, Vol. 28, No. 2, p. 189.
14Moore, S., B. Donavan, and A. Hudson. 1993. “Brief Report: Facilitator-Suggested
Conversational Evaluation of Facilitated Communication.”Journal of Autism and Developmental
Disorders, Vol. 23, No. 3, pp. 541-553.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
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15Moore, S., B. Donavan, A. Hudson, J. Dykstra, and J. Lawrence. 1993. “Brief Report:
Evaluation of Eight Case Studies of Facilitated Communication.” Journal of Autism and
Developmental Disorders, Vol. 23, No. 3, pp. 531-538.
16Myles, B.S, and R.L. Simpson. 1996. Impact of Facilitated Communication Combined with
Direct Instruction on Academic Performance of Individuals with Autism. Vol. 11, No. 1, http://
web13.epnet.com/citation.asp?tb=1&_ug+sid+7AC27503%2(accessedSept.21,2005).
17Myles, B.S., R.L. Simpson, and S.M. Smith. 1996. “Collateral Behavioral and Social Effects
of Using Facilitated Communication with Individuals with Autism.”Focus on Autism and Other
Developmental Disabilities, Vol. 11, No. 1, pp. 163-169, 190.
18Myles, B.S., and R.L. Simpson. 1994. “Facilitated Communication with Children Diagnosed
as Autistic in Public School Settings.” Psychiatry in the Schools, Vol. 31, pp. 208-221.
19Oswald,D.P.1994.“FacilitatorInuenceinFacilitated Communication.”Journal of Behavioral
Education, Vol. 4, No. 2, pp. 191-200.
20Perry, A., S. Bryson, and J. Bebko. 1993. “Multiple Method Validation Study of Facilitated
Communication: Preliminary Group Results.”Journal of Developmental Disabilities, Vol. 2,
No. 2, pp. 1-19.
21Perry, A., S. Bryson, and J. Bebko. 1998. “Brief Report: Degree of FacilitatorInuencein
Facilitated Communication as a Function of FacilitatorCharacteristics,AttitudesandBeliefs.”
Journal of Autism and Developmental Disorders, Vol. 28, No. 1, pp. 87-90.
22Regal, R.A., J.E. Rooney, and T. Wandas. 1994. “Facilitated Communication: An Experimental
Evaluation.”Journal of Autism and Developmental Disorders, Vol. 24, No. 3, pp. 345-354.
23Simon, E.W., D.M. Toll, and P.M. Whitehair. 1994. “A Naturalistic Approach to the Validation
of Facilitated Communication.”Journal of Autism and Developmental Disorders, Vol 24, No.
5, pp. 647-657.
24Simpson, R.L., and B. S. Myles. 1995. “Effectiveness of Facilitated Communication With
Children and Youth With Autism.”The Journal of Special Education, Vol. 28, No. 4, pp. 424-
439.
25Smith, M.D., and R.G. Belcher. 1993. “Brief Report: Facilitated Communication with Adults
with Autism.”Journal of Autism and Developmental Disorders, Vol. 23, No. 1, pp. 175-183.
26Smith, M.D., P.J. Haas, and R.G. Belcher. 1994. “Facilitated Communication: The Effects of
FacilitatorKnowledgeandLevelofAssistanceonOutput.”Journal of Autism and Developmental
Disorders, Vol. 24, No. 3, pp. 357-367.
27Szempruch, J., and J.W. Jacobson. 1993. “Evaluating Facilitated Communications of People
With Developmental Disabilities.”Research in Developmental Disabilities, Vol. 14, pp. 253-
264.
28Vázquez, C.A. 1994. “Brief Report: A Multitask Controlled Evaluation of Facilitated
Communication.” Journal of Autism and Developmental Disorders, Vol. 24, No. 3, pp.
369-379.
Section One: What Works and What Doesn’t?
305
29Vásquez,C.A.1995.“FailuretoConrmtheWord-RetrievalProblemHypothesis in Facilitated
Communication.”Journal of Autism and Developmental Disorders, Vol. 25, No. 6, pp. 597-
610.
30Wheeler, D.L., J.W. Jacobson, R.A. Paglieri, and A.A. Schwartz. 1993. “An Experimental
Assessment of Facilitated Communication.”Mental Retardation, Vol. 11, No. 1, pp. 49-60.
31Crossley, R. 1988. Unexpected communication attainments by persons diagnosed as autistic and
intellectually impaired. Unpublished paper presented at International Society for Augmentative
and Alternative Communication, Los Angeles, CA.
32Crossley, R., and A. MacDonald. 1984. Annie’s Coming Out. NY: Viking Penguin.
33Biklen, D. and D.N. Cardinal. 1997. Contested Words, Contested Science: Unraveling the
Facilitated Communication Controversy. New York, NY: Teachers College Press.
34Olney,M.1997.AControlled study of facilitated communication using computer games. In D.
Biklen and D.N. Cardinal, eds., Contested words, contested science: Unraveling the facilitated
communication controversy. New York, NY: Teachers College Press.
35Borthwick,C.,andR.Crossley,(seen.1above).
36Olney,M.2001.“Evidence of literacy in individuals labeled with mentalretardation.”Disability
Studies Quarterly, Vol. 21, No. 2, pp. 1-12.
37Calculator, S.N., K. Singer. 1992. “Preliminary Validation of Facilitated Communication.”
Topics in Language Disorders, Vol. 12, No. 1, pp. 9-16.
38Rubin, S., D. Biklen, C. Kasa-Hendrickson, P. Kluth, D.N. Cardinal, and A. Broderick. 2001.
“Independence, Participation, and the Meaning of Intellectual Ability.”Disability & Society,
Vol. 16, No. 3, pp. 415-429.
39Niemi. J., and E. Kärnä-Lin. 2002. “Grammar and Lexicon in Facilitated Communication:
ALinguisticAuthorshipAnalysisofaFinnishCase.”Mental Retardation, Vol. 40, No. 5, pp.
347-357.
40Broderick,A.A.,andC.Kasa-Hendrickson.2001.“SayJustOneWordatFirst:TheEmergence
of Reliable Speech in a Student Labeled with Autism.”Journal of the Association for Persons
with Severe Handicaps, Vol. 26, No. 1, pp. 13-24.
41Schubert,A. 1997. “I Want To Talk Like Everyone: On the Use of Multiple Means of
Communication.”Mental Retardation, Vol. 35, No. 5, pp. 347-354.
42Crossley,R.,andJ. R.Gurney.1992.“Gettingthe words Out;Case Studies in Facilitated
CommunicationTraining.”Topics in Language Disorders, Vol. 12, No. 4, pp. 29-45.
43Biklen, D., M.W. Morton, D. Gold, C. Berrigan, and S. Swaminathan. “Facilitated
Communication: Implication for Individuals with Autism.” Topics in Language Disorders,
Vol. 12, No. 4, pp. 1-28.
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44Biklen, D., and A. Schubert. 1991. “New words: The Communication of Students with Autism.”
Remedial and Special Education, Vol. 12, No. 6, pp. 46-57.
45Biklen, D. 1990. “Communication Unbound: AutismandPraxis.”Harvard Educational Review,
Vol. 60, pp. 291-314.
46Broderick,A.A.,andC.Kasa-Hendrickson,(seen.40above).
47Cardinal, D.M., D. Hanson, and J. Wakeham. 1996. “Investigation of Authorship in Facilitated
Communication.”Mental Retardation, Vol. 34, pp. 231-242.
48Ogletree,B.T.,andA.Hamtil.1993.“Facilitated Communication: Illustration of a Naturalistic
Validation Method.”Focus on Autistic Behavior, Vol. 8, No. 4, pp. 1-10.
49Olney,M.,(seen.36above).
50Sheehan, C.M., and R.T. Matuozzi. 1996. “Investigation of the Validity of Facilitated
CommunicationThroughtheDisclosureofUnknownInformation.”Mental Retardation, Vol.
34, No. 2, pp. 94-107.
51Vazquez,C.A.,(seen.28above).
52Weiss, M.J., S.H. Wagner, and M.L. Bauman. 1996. “A Validated Case Study of Facilitated
Communication.”Mental Retardation, Vol. 34, No. 4, pp. 220-230.
53Olgetree,B.T.,andA.Hamtil,(seen.48above),p.7.
54Sheehan,C.M.,andR.T.Matuozzi,(seen.50above),p.99.
55Vazquez,C.A.,(seen.29above),p.608.
56Cardinal,D.M.,D.Hanson,andJ.Wakeham,(seen.47above),p.239.
57Borthwick, C., and R. Crossley, (seen.1above).
58Margolin, K.N. 1994. “How Shall Facilitated Communication Be Judged? Facilitated
Communication and the Legal System.”In:Shane,H.C.ed.,Facilitated Communication. The
Clinical and Social Phenomenon, San Diego, CA: Singular Press, pp. 227-258.
59Burgess,C.A.,I.Kirsch,H.Shane,K.L.Niederauer,S.M.GrahamandA.Bacon, (seen.5
above),p.71.
60Kezuka,E.,(seen.12above).
61Dillon, K.M., J.E. Fenlason, and D.J. Vogel. 1994. “Belief In and Use of a Questionable
Technique,Facilitated Communication, For Children With Autism.” Psychological Reports,
Vol. 75, pp. 459-464.
62Dillon,K.M.,J.E.Fenlason,andD.J.Vogel,(seen.61above),p.459.
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307
63American Academy of Child and Adolescent Psychiatry, http://www.aacap.org/publications/policy/
ps30.htm#TOP,(accessedMay5,2006).
64Committee on Children With Disabilities. 1998. “Auditory Integration Training and Facilitated
Communication for Autism.”Pediatrics, Vol. 102, No. 2, pp. 431-433.
65Technical Report. 1994. Facilitated Communication, American Speech-Language-Hearing
AssociationVol.III-113,p.12.http://www.asha.org(accessedOct.3,2005).
66Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany,NY:New York State Department of Health, p. IV-65.
67Association for Science in Autism Treatment (ASAT), http://www.asatonline.org/
about_autism/autism_info09.html,(accessedOct.3,2005).
68Quackwatch, www.autism-watch.org/rx/fc.shtml(accessedOct.3,2005).
69Howlin, P. 1994. “Facilitated Communication: A ResponsebyChildProtection.”Child Abuse
& Neglect, Vol. 18, No. 6, pp. 529-530.
70Howlin, P., and D.P.H. Jones. 1996. “An Assessment Approach to Abuse Allegations Made
Through Facilitated Communication.”Child Abuse & Neglect: The International Journal, Vol.
20, No. 2, pp. 103-110.
71Jones, D.P. 1994. “ Autism, Facilitated Communication and Allegations of Child Abuse and
Neglect.”Child Abuse and Neglect, Vol. 18, pp. 491-493.
72Myers, J.E.B. 1994. “The Tendency of the Legal System toDistortScientic and Clinical
Innovations: Facilitated Communication as a Case Study.” Child Abuse & Neglect, Vol. 18,
No. 6, pp. 505-513.
73Siegel, B. 1995. “Assessing Allegations of Sexual Molestation Made Through Facilitated
Communication.”Journal of Autism and Developmental Disorders, Vol. 25, No. 3, pp. 319-
326.
74Bligh, S., and P. Kupperman. 1993. “Brief Report: Facilitated Communication Evaluation
ProcedureAcceptedinaCourtCase.”Journal of Autism and Developmental Disorders, Vol.
23, No. 3, pp. 553-557.
75Starr E. 1994. “Facilitated Communication: A ResponsebyChildProtection.”Child Abuse
and Neglect, Vol. 18, No. 6, pp. 515-527.
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309
Miscellaneous Therapies: Holding Therapy
What is Holding Therapy?
Holding Therapy is a technique developed by Martha Welch, a New York
psychiatrist. This form of therapyrequiresthatthemotherholdherautistic child
close to her body, in an attempt to address the belief that the individual with autism
has a need to attach and bond to his or her mother.1 This therapy is based on
the theory that the root cause of autism is the withdrawal of human contact, due
to the disturbed attachment which has supposedly occurred in the child’s early
social environment.2 Building upon this idea, the goal of Holding Therapy, is to
“repair”themother-child attachment. This is seen as key, by holding therapists,
in the treatment of autism.3 The time that the mother holds the child is designed
to stimulate attachment and bonding between mother and child.
What evidence do the practitioners have that this
really works?
Thereiscurrentlynoscienticevidence that Holding Therapy is an effective
treatment for individuals with autism. A comprehensive literature search netted
eighteen articles which mentioned Holding Therapy and autism. The best articles
describe case studies.4Ofthosearticles, only two studies had any data and one
of those is a 1985 controlled studydonebyRohmannetal.(writteninGerman).
In this study, although researchers randomly assigned children to experimental
and control groups, the outcome was entirely based on parental reporting, which
is highly problematic. In Holding Therapy, the parent is heavily involved in
administering the actual therapy; therefore, under no circumstances should the
parent take data.(PleaseseeSectionTwoon“self-fulllingprophecy”forfurther
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discussion on parental reporting).Additionalanecdotal reporting comes primarily
from Welch, the founder of Holding Therapy. Currently, there are no objective,
well-executed, controlled tests of Holding Therapy. In addition, it is unclear
what, if any, other interventions are being implemented concurrently with these
children. It is also not clear how long these children undergo Holding Therapy.
There are many unanswered questions about how the “cure” is measured or
determined.Wearenotgiveninformationabout:1)whichtests are being used
to measure progress;2)thesignicanceofthechangesbeingobserved,and3)
whether these children even have an independent diagnosis of autism. Finally,
only the successes of Holding Therapy are reported, which leads to biased results.
If only the successes are reported(throughanecdotalevidenceonly),theconsumer
is mislead to believe that this intervention is highly successful. Theoretically,
there could be large numbers of unreported children with autism from this group
whohavenotbenetedfromtheintervention.
What does the therapy actually look like?
The holding therapists recommend that holding be done at least once a day, for
at least one hour per session. It is carried out with the child and mother sitting
face-to-face. This position is reportedly used to maximize the awareness of
both mother and child to one another.5 The child’s arms and legs are wrapped
around the mother. According to Welch, there are three phases which mother
andchildexperience: 1)confrontation;2)rejection,and3)resolution. In the
confrontation phase, both mother and child come to feel anger regarding the
relationships they have in their lives. The rejection phase occurs when the child
physically or emotionally resists the holding. During this phase, the mother must
physically restrain the child while verbally communicating to the child about her
feelings. A desperate struggle reportedly takes place,6 which is then followed
by the resolution phase. At this stage, the child stops resisting and mother and
Section One: What Works and What Doesn’t?
311
child are physically and emotionally“molded.”7 Welch describes the third stage
as including, “tender intimacy with intense eye contact, exploratory touching ...
andgentleconversation.”8
What else do I think?
It is widely accepted by researchers today that autism is a neurological disorder.
In addition, autism is understood by most reputable researchers and clinicians
intheeldascompletelyunrelatedtoanyallegedlydisruptedbonding process
between mother and child. Given that it is widely rejected that autism is the
result of a disrupted mother-child bond, I have no reason to believe that Holding
Therapy is effective for children with autism. This argument once again places
the responsibility for the child’s disorder directly on the shoulders of the mother.
The origins of this theory are in observations long ago that there is little in the
way of what can be considered ‘normal’ interaction between these children
and their mothers. However, it is now widely held that, due to the nature of
the disorder, parents had been trained by the child to interact less as a result
of constant rejection or indifference from the child, not the parent. In other
words, parents do not cause autism; rather, parents react to the autism. This
is the nature of the disorder and completely unrelated to good or negligent
parenting. Holding Therapy is one of the few treatments which continues to
rely on the widely discredited view that the mother is somehow responsible for
her child’s autism.
An additional problem with Holding Therapy concerns the researchers’
explanations as to why the therapy may be unsuccessful. When Holding Therapy
fails, it is once again blamed on the mother’s inability to bond with her child.
This fail-safe explanation(alsocalledacircularargumentortautology)should
bearedagforparentswhoareevaluatinginterventions for their children. Any
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treatment that cannot fail, even theoretically, can be said to fail the test of what
scientists call “falsiability”(seeSectionTwoforadiscussiononfalsiability).
Proponents of this method claim that the therapist plays an integral role in
assessing Holding Therapy, because only they are able to interpret the messages
being sent between mother and child.9 They alone claim to be able to determine
howthemother’sinabilitiesfrustratethechildandsubsequentlycausethechild
towithdraw.This is the second redag. Ifa legitimateresearcher cannot
measure an effect(evenperhapsindirectly),itmayaswellnotexist.Inother
words, for data collection purposes, observational objectivity is crucial.
Would I try it on my child?
I would not try this therapyonmychildfortworeasons:rst,asyouhave
probably surmised, my reasoning has to do with science. At this point, there is
no science supporting the method. The second reason for my rejection of this
therapyisitsentirepremise.Indthenotionthatchildrenwithautism suffer
withtheafictionbecause they have notsufcientlybonded to their parents
during early social environmentto be seriouslyawed. Inmy opinion, the
observed lack of attachment and purported lack of bonding occurs due to a
neurological dysfunction and not due to some activity the mother did or failed
todo.Quitefrankly,I’mquitetiredofhearingabouthowautism is somehow
due to lack of bonding between mother and child. This theory harkens back
toechoesofBrunoBettelheim’s“refrigeratormother”theory of autism, which
plagued parents for decades before it was discredited in the 1950s. I would
never try a therapy on my child that is so unfounded, and across the board,
anti-mother. The harsh reality is that mothers of children with autism actually
deserve a medal, not constant criticism from so-called experts about their
supposedmaternalinadequacy.
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What kind of study would I like to see the Holding Therapy
Practitioners do?
Given the highly questionable theoretical basis for Holding Therapy (the
“refrigeratormother”theory),itisdoubtfulthat any successful results would
be generated using rigorous science. However, given that there are still a small
number of practitioners using Holding Therapy as an intervention, despite the
lack of data, I believe that it needs to be systematically evaluated, according
to generally agreedupon scientic principleswhich motivategood research.
Specically,I would liketoseethe Holding Therapy practitioners conduct a
study that complies with the various criteriaforwell-designedscienticstudies.10
Onlyafterconductingarigorousstudy which produces successful outcomes could
we ever consider Holding Therapy a legitimate treatment option for children
with autism.Intheabsenceofanyscienticallyveriableresults, I would not
consider this a legitimate therapy for autism.
Who else recommends against Holding Therapy as a method
for the treatment of autism?
Holding Therapy was in vogue in the 1980s but has fallen out of favor with most
members of the autism treatment community. The Association For Science in
Autism treatment considers Holding Therapy to be in the group of treatments that
have yet to be evaluated carefully.11 In addition, Quackwatch has characterized
Holding Therapy accurately, in my view, based on theories which come from
theeldofpsychoanalysisandhavenoeffective evidence to date.12 Finally, the
National Council Against Health Fraud does not endorse Holding Therapy for
children with attachment disorders.13
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So you’re still on the horns of a dilemma?
If the lack of science isn’t enough to dissuade you from considering Holding
Therapy, you may be interested to know that in February 2005, the state of Utah
ordered practitioners of Holding Therapy to end the practice because it has been
alleged to constitute a form of abuse.14
What’s the bottom line?
Based on the scienticresearch to date, there is no evidence that Holding Therapy
is an effective treatment for individuals with autism.
Section One: What Works and What Doesn’t?
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Endnotes for Holding Therapy
1Welch, M.G. 1989. “Toward Prevention of Developmental Disorders.” Pre and Peri Natal
Psychology Journal, Vol. 3, No. 4, pp. 319-328.
2Welch,M.G.,(seen.1above),p.321.
3Welch,M.G.,(seen.2above),p.321.
4Stades-Veth, J. 1988. “Autism/Broken Symbiosis: Persistent Avoidance of Eye Contact with
the Mother. Causes, Consequences,PreventionandCure of Autistiform Behavior in Babies
throughMother-ChildHolding.”ERICED294344,pp.33.
5Welch, M.G. 1988. Holding Time. NY: Fireside, p. 25.
6Welch,M.G.,(seen.5above).
7Welch,M.G.,(seen.5above),p.47.
8Welch,M.G.,(seen.5above).
9Welch, M.G. 1983. “Appendix I: Autism Through Mother-Child Holding Therapy.”InTinbergen,
E.A. and N., Autistic children – New hope for a cure. London: GeorgeAllen & Unwin,pp.
323-335.
10The Consolidated Standard of Reporting Trials (CONSORT), www.consort-statement.org/
downloads/download.htm,(accessedFeb.13,2006).
11Association For Science in Autism Treatment, www.asatonline.org/resources/library/informed_
choice.html,(accessedMay10,2006).
12Quackwatch, www.quackwatch.org/01quackeryrelatedtopics/autism.html,(accessedMay10,
2006).
13The National Council AgainstHealthFraud,www.ncahf.org,(accessedAug.9,2006).
14Consumer Health Digest No. 05-07, www.ncaf.org/digest 05/0 5-07 .html, (acces sed
Feb.8,2006).
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Section One: What Works and What Doesn’t?
317
Miscellaneous Therapies: Music Therapy
What is Music Therapy?
It is difcult to precisely identify what comprises music therapy, given the
extreme variability amongst the approaches outlined by the many studies
examined here. The underlying theories behind music as a therapeutic approach
for individuals with autism are numerous. In fact, the goals of Music Therapy
programs are so varied that Kaplanetal.(2005)actuallyquantiedthedifferent
studies in relation to their goals. They found that 41 percent of the interventions
focus on language and communication, followed closely by 39 percent which
concentrate on behavior and psychosocial goals. In addition, Whipple(2004)
did a meta-analysis on studies which report on Music Therapy for children with
autism, in an attempt to discern whether Music Therapy, in its various forms,
is effective.
Some investigators propose that there is a relationship between music and
behavior or attention.1,2,3,4 Others proposethat music can produce increased
engagement,5,6 communication,7,8 and develop relationships.9 Still others claim
that music can enhance memory, learning and cognition,10 or serve as an effective
contingent reinforcer.11 Another group of researchers study the impact of music
as a relaxant for people with autism.12,13,14Andnally,oneresearcher examined
whether or not individuals with autism have a developmental difference which
gives them preference for music over visual stimuli.15
Music is presented in various styles and tempos, and the teacher to student ratio
varies from one-on-one to group sessions. The only consistent factor across all
studies was that the subjects were exposed to music, in one form or another.
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What evidence do the practitioners have that this
really works?
Ourcomprehensiveliterature search took us to over half a dozen databases,
inwhich we foundoverfty articles relating to autism and Music Therapy.
Onceweweededoutforstudies that only present data on Music Therapy with
autistic subjects, we found twenty-one studies, only fourteen of which were
peer-reviewed. The rest(seven)wereeitherunpublishedMasterofArtstheses
and Ph.D. dissertations, or presentations at conferences which have not been
subjected to peer-review, and therefore, are of very limited value (and not
discussedhere).Ofthefourteenpeer-reviewed journal articles, we’ve divided
them into successful versus unsuccessful studies.
“Successful” studies
Therewereelevenstudiescategorizedas“successful”basedontheresults of their
research and of those studies,twowereremovedduetolackofscienticrigor.14,15
The remaining nine studies involved a total of twenty-seven individuals with
autism. Although these studies reported improvements in various areas, most of
the improvements related to music(whichmakessense,becausemanychildren
with autismndmusicreinforcing).Thenon-music categories did not create the
same results.16 In addition, parents reported better results than the professionals.
To illustrate, in Edgerton(1994)therewereelevenchildrenwithautism who
took part in the study. This study did not use a standardized communication
instrument; rather, the researchers created their own instrument for the study
(the Checklist of Communicative Responses/Acts Score Sheet [CRASS]).
This is problematic in itself, as the CRASS has not been extensively tested for
validity and reliability(seeadiscussioninSectionTwoontheimportanceof
validity).Inaddition,intermsoftheBehavior Change Survey results, those
evaluating the children all knew that the children had undergone the treatment.
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319
Predictably, the parents observed the greatest behavior change, which was
negligible, followed by the teachers’ observation. These observations are
compared to the Speech Therapists who reported no change whatsoever.17*
Therefore, although the authors report success, their results actually paint a very
different picture. Another study with one child reported results of increased
sociability and pretend play; an alternative explanation for this increased
sociability and pretend play could have been that the mother was actively
engaging in the child’s perseverative play(pluckingoutufffromthebedspread)
and ritualized playsequences(denedasasetofbehaviorsusingatoyordoll
doneexactlythesameway,repetitively),whichisnottechnicallypretend play
(pretendplaycanbedenedasincludingoriginalplaysequencescreatedbythe
childwithsomevariationforeachplaysession).
Another interesting study which reports data from ten children with autism is
Buday(1995). Thisresearch tested whether music could help children with
autism learn targeted signs and words. This well done study found that children
learned to vocalize and sign fourteen target words better when those words were
put to music rather than when the words were read out loud while the music was
playing.Theauthor,quiterightly,cautionstheconsumerabouttheseresults to
note that these children learned the words in an experimental setting. The children
were not tested to see whether they use these words to communicate outside
of the setting, and these words came from rhyming phrases which may have
enhanced their ability for memorization when set to music.Othernon-rhyming
words may not have the same effect. In addition, learning a sign or word may
bear no relationship to understanding the word or how and when to use it. This
arearequiresadditionalresearch to discern whether, indeed, music has any true
*Theparentsobservationwasnegligible(mean=4.8),followedbytheteachersat(mean=4.7).The
Speech Therapists reportednochangewhatsoever(mean=4.2)[evenascoreofmean=5wouldindicate
only a slight change].17
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valueinspeedingupmeaningfulsignorwordacquisitionamongchildrenwith
autism. Note: memorization may be enhanced using this technique;however,
more research needs to be done prior to recommending the use of music to aid
intheacquisitionofmeaningfullanguagecomprehensionanduse.
Another study in the Music Therapyeldusessocial stories set to music or read
to the child regarding a behavior that needs to be eliminated.4 The researchers
found that singing or reading the social story resulted in a decrease in those
behaviors, more so than in the control condition where no social story was used.
However, only one of the four children in the study responded better when the
social story was sung rather than when it was read. The study results support the
use of social stories rather than the use of music with social stories.
Finally, one study worth mentioning7 used music as a positive reinforcement
to increase spontaneous speech among children with autism. Although the
Music Therapyeldembracesthisstudy, it is actually a study that belongs in
the behavioristeld(theeldofappliedbehavioranalysis)becausethestudy
tests music as a reinforcer rather than making conclusions on any potentially
therapeutic property inherent in music.
“Unsuccessful Studies”
There were three studies which found no strong evidence regarding the effective
use of Music Therapy for children with autism. Hairston (1991) found that
mentally retarded, non-autistic subjects made more gains than mentally retarded,
autistic subjects and that no gains made by autistic subjects were statistically
signicant.Burleson(1989)foundthatchildrenwithautismorschizophrenia
were more successful on a task when background music was played. Their nding,
however, did not reach statisticalsignicance.* Despite this weak nding,more
*p<.062.
Section One: What Works and What Doesn’t?
321
research could be conducted on the effect of music in focussing autistic children
when they are engaged in a repetitivetask.Thisbegsthequestion, however, as
to why would we want autistic children engaging in repetitive tasksintherst
place(unlesstherewereavocationalcomponenttobetaught).Thelaststudy,
Thaut(1987),tested the preferences of autistic children for visual versus musical
stimulus, and found that there was no statisticallysignicantdifferenceinterms
of preference. There was no therapeutic component to this study.
What does the therapy actually look like?
PartofthedifcultyinevaluatingMusic Therapy in the treatment of autism stems
from the different procedures and approaches the many examiners have used.
Not only is the independent variable diverse across the studies, but so too is the
dependent variable. Music Therapy has been hypothesized to have a variety of
effects on different aspects of the autistic population. In general, studies evaluated
here include the effects of Music Therapy on development, stimuli preferences,
task performance, memory and learning, social interaction and behavior. In
addition, the way in which Music Therapy is presented to the participant varies.
In the studies mentioned above, the therapeutic process included musical
improvisation, varied beats, varied rhythms, Musical Interaction Therapy and
Creative Music Therapy. Adding to the inconsistencies are the subject to therapist
ratios with which the music therapy is presented. For some, it is one-on-one
therapy, while for others it occurs in group or classroom settings.
What else do I think?
The mechanism by which Music Therapy is thought to affect individuals with
autism is unknown, so far. For many, the observation that many individuals with
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autism enjoy music may create the impression that they are somehow learning or
benetingfromit.Whilemanychildrenwithautism do enjoy listening to and
playing music,thereisinsufcientevidence to conclude that the population of
individuals with autism at large enjoys music.
Given the diversity of the supporting theories behind music as a therapeutic
process for individuals with autism and the lack of supporting data for the various
theories,it isdifcult to concludethat anyof them istherapeutic. Theories
include everything from music as a contingent reinforcement, to music as a
method for identifying traumatic attachment events in the individual’s past and
to help them to develop insight into their own personalities. While there may
be no apparent negative side effects to Music Therapy, which may account for
its popularity, there appear to be no consistent positive effects either. There are
dangers to using approaches which have not been proven effective, because
they may prevent the use of effective approaches. In addition, there is always
the danger of inadvertently reinforcing undesirable or maladaptive behaviors
when using therapies that do not have established, systematic procedures which
have been proven effective and are standardized. In other words, music may
be reinforcing to many people with autism and may inadvertently reinforce the
wrong things. It is important to recognize this property as music therapists, due
to bad timing, may unwittingly reinforce problematic behaviors through their
use of music.
Would I try it on my child?
My child is very musical. She is one of those people with autism who is very
musically talented and loves everything to do with music. In fact, most of her
life is spent either playing music(sheplayssixinstruments–threequitewell)
and writing or composing musical scores. Would I categorize what she does as
Section One: What Works and What Doesn’t?
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Music Therapy? Most emphatically, NO. Has music made her life fuller and
happier? YES, without a doubt. For children with autism who enjoy music, it
is clear that music can enhance their life similar to the enrichment typically-
developing children receive with music. The difference is that music may be an
important conduit for an autistic person to join a peer group, as music is often
played in groups. In addition, if the autistic person is talented, there may be
vocational opportunities in the world of music for that person. In addition, music
is a very good leisure skill; however, what I have described is not therapy. Based
on the research to date, Music Therapy will not ameliorate autism; therefore, I
would not pay for music therapists to work with my child. I have, however, spent
considerable sums of money to give my child lessons for various instruments,
because music enriches her life immeasurably.
What kind of study would I like to see the Music
Therapists do?
In order to appropriately and accurately evaluate the effects of Music Therapy on
individuals with autism, there needs to be a standardized and well-operationalized
independent variable. In other words, music therapists need to develop a therapy
protocol(thespecicsofhowthetreatmentisoperationalized);then,thatprotocol
needs to be tested.Thisistherststeptounderstandingtheeffects of Music
Therapy and enabling the research to be replicated. A therapeutic protocol may
also give us insight into the mechanism by which Music Therapy is effective
if indeed any therapeutic gains are observed. Experimental designs including
control groups, random assignment, signicant subject sizes and results that
include statisticallevelsofsignicanceareoverdueinthisarea.Thereismuch
work that needs to be done before Music Therapycanbejustiedasatreatment
option for individuals with autism.
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Who else recommends for or against Music Therapy as
a method for the treatment of autism?
The most well-known clinical practice guidelines which recommend against
the use of Music Therapy is the New York State Department of Health clinical
practice guidelines for autism treatment. The guidelines state: “Because of
the lack of demonstrated efcacy,music therapy cannot be recommended as an
intervention method for young children with autism.”18 As Music Therapy has
not been reported to be dangerous for children, professional organizations have,
for the most part, ignored this therapy. In addition, since Music Therapy is so
poorlydened,manyparentshave put their autistic children into lessons and
groupclassesandhaveredenedtheseclassesasbeingsomehowtherapeutic,
because their children are engaged in and look forward to the class.
So you’re still on the horns of a dilemma?
If you are still considering Music Therapy for your child, it is important to keep in
mind that this therapy has no data to support any claims that the method improves
the symptoms of autism. If music brings joy to your child and gives him skills
that your child can use to be part of a group and/or spend hours of leisure time
productively, then by all means give him or her musical opportunities. I would
suggest that we remove the word “therapy”fromtheterm“Music Therapy,”and
then have the child who enjoys music, enjoy as much of it as possible, from all
thatthebroadeldofmusic has to offer.
What’s the bottom line?
Based on the scientific research to date, there is not enough evidence to
demonstrate that Music Therapy is an effective treatment for improving the
symptoms associated with autism.
Section One: What Works and What Doesn’t?
325
Endnotes for Music Therapy
1Durand,V.M.,andE.Mapstone.1998.“Inuenceof‘Mood-Inducing’Music on Challenging
Behavior.”American Journal on Mental Retardation , Vol. 102, No. 4, pp. 367-378.
2Burleson, S.J., D.B. Center, and H. Reeves. 1989. “The Effect of Background Music on Task
PerformanceinPsychoticChildren.”Journal of Music Therapy, Vol. 26, No. 4, pp. 198-205.
3Kostka, M.J. 1993. “A Comparison of Selected Behaviors of a Student With Autism in Special
Education and Regular MusicClasses.”Music Therapy Perspectives, Vol. 11, pp. 57-60.
4Brownell, M.D. 2002. “Musically Adapted Social Stories to Modify Behaviors in Students With
Autism: Four Case Studies.”Journal of Music Therapy, Vol. 39, No. 2, pp. 117-144.
5Wimpory, D.C., P. Chadwick, and S. Nash. 1995. “Musical Interaction Therapy for Children
With Autism: An Evaluative Case Study With Two-Year Follow-Up. Brief Report.”Journal of
Autism and Developmental Disorders, Vol. 25, No. 5, pp. 541-553.
6Wimpory, D.C., and S. Nash. 1999. “Musical Interaction Therapy: Therapeutic Play for Children
With Autism.”Child Language Teaching & Therapy, Vol. 15, No. 1, pp. 17-28.
7Watson, D. 1979. “Music as Reinforcement in Increasing Spontaneous Speech Among Autistic
Children.”Missouri Journal of Research in Music Education, Vol. 4, pp. 8-20.
8Edgerton, C.L. 1994. “The Effect of Improvisational Music Therapy on the Communicative
Behaviors of AutisticChildren.”Journal of Music Therapy, Vol. 31, No. 1, pp. 31-62.
9Toolan, P.G., and S.Y. Coleman. 1994. “Music Therapy, A Description of Process: Engagement
and Avoidance in Five People With Learning Disabilities.”Journal of Intellectual Disability
Research, Vol. 38, No. 4, pp. 433-444.
10Buday, E.M. 1995. “The Effects of Signed and Spoken Words Taught With Music on Sign
and Speech Imitation by Children With Autism.”Journal of Music Therapy, Vol. 32, No. 3,
pp. 189-202.
11Hairston, M.P. 1990. “Analyses of Responses of Mentally Retarded Autistic and Mentally
Retarded Nonautistic children to Art Therapy and Music Therapy.”Journal of Music Therapy,
Vol. 27, No. 3, pp. 137-150.
12Orr,T.J.,B.S.Myles,andJ.K.Carlson.1998. “The Impact ofThythmicEntrainmenton a
Person With Autism.”Focus on Autism and Other Developmental Disabilities, Vol. 13, No. 3,
pp. 163-166.
13Wigram, T. 1995. “A Model of Assessment and Differential Diagnosis of Handicap in Children
Through the Medium of Music Therapy.”InT.Wigram,B. Saperston,andP.A.Langhorne,
Handbook of Art and Science of Music Therapy. England: Harwood Academic Publishers, pp.
181-193.
14Barber, C.F. 1999. “The Use of Music and Colour TherapyasaBehaviourModier.”British
Journal of Nursing, Vol. 8, No. 7, pp. 443-448.
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15Thaut, M.H. 1987. “VisualVersusAuditory (Musical) Stimulus Preferences in Autistic
Children: A Pilot Study.”Journal of Autism and Developmental Disorders, Vol. 17, No. 3, pp.
425-431.
16Parteli, L. 1995. “Aesthetic Listening Contributions of Dance/Movement Therapy to the Psychic
Understanding of Motor Stereotypes and Distortions in Autism and Psychosis in Childhood and
Adolescents.”Special Issue: European Consortium for Arts Therapy Education (ECATE). The
Arts in Psychotherapy, Vol. 22, No. 3, pp. 241-247.
17Edgerton,C.L.,(seen.8above),p.47.
18Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany,NY:New York State Department of Health, p. IV-15 to 21, IV-24.
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327
Miscellaneous Therapies: Pet-facilitated
Therapy
What is Pet-facilitated Therapy?
Those who practice Pet-facilitated Therapy(alsocalledAnimal-Assisted Therapy)
claim that in the same way that peer-mediated therapy helps a child with autism
improve their social behavior, so can the use of pets to change the social behavior
of children with autism. Pet facilitators usually use dogs as the pet of choice and
argue that because dogs are socially demanding(licking,barkingandtending
tofollowachild),theirinherentsociability can be harnessed to increase social
interaction for children with autism.
What evidence do the practitioners have that
this really works?
Ourcomprehensivedata search netted three peer-reviewed journal articles(and
a number of Master of Science degree theses and presentations at conferences on
thistopic,whichhavebeenexcluded).Onlytwoofthepeer-reviewed articles1,2
present data on an increase in the sociability of children with autism through
Pet-facilitated Therapy.
The two articles which provide data support the contention that Pet-facilitated
Therapy is responsible for systematically changing the social behavior of the
children in the study.Onestudy included twelve children with autism between
veandtenyearsofage.Overseveralsessions, the therapist established contact
between the child and dog, and taught the child various games and activities
appropriate for dog play. Next, the therapist engaged in turn-taking with the child.
The researchers measured the amount of social interaction and social isolation that
the child exhibited, and found that the introduction of the dog increased the rate
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of social interaction with the adult and dog. Even after the dog was withdrawn,
the rate of social interaction with an adult improved over the base-line, although
that result diminished somewhat over time. The study design was a within-
subject design where base-line measures were taken, treatment followed, and
posttreatment measuresweresubsequentlyrecordedforthatchild.
Although the studydesignwasacceptable,thereissomequestion about whether
the pet is responsible for increased sociability. To their credit, the researchers
state: “But it was not the dog alone that created the change ... The therapist’s
orchestration of the child-dog and then child-therapist contact was critical.”3
They also refer to prior research in the behavioral literature which demonstrates
the strength of the adult-led, active role in therapy. In addition, they acknowledge
an increase in the social isolation of the child after the study was completed.
The second study was a very well controlled, within-subjects, repeated-measures
design in which each child experienced each experimental condition weekly.
The children played with a ball, a stuffed-dog, or a live dog each week, over a
fteen-weekperiod,andfoundsignicantdifferencesbetweenchildreninthe
three experimental conditions. The child’s behaviorwassignicantlydifferent
inthelive-dogconditionascomparedtotheothertwoconditions.Ofnoteisthat
the hand-apping(aformofself-stimulatory behavior)increasedsignicantlyin
the live-dog condition. In addition, when the live dog was present, the children
paidsignicantlylessattentiontothetherapist than in the other two conditions.
Based on these results, the authors attribute tentative support for Pet-facilitated
Therapy, although they make it clear that this was research and not therapy.
In other words, they did not attempt to change the behavior of the children in
the study, but rather, wanted to see if the dog alone would elicit the change in
sociability.4
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329
The researchers’ interpretation of the results of this study warrant some further
discussion. If we assume that the data was taken accurately and that the results
didindeedoccur,thenextquestion is whether their discussion of these results
has merit and whether these results of increase in hand-apping indicate a result
which is meaningful for the child. The observation regarding the increase in
hand-apping may have been due to the excitement of the presence of a dog,
rather than increased sociability(whichisthegoalofthestudy).Therearemany
other ways to elicit hand-apping in children with autism, e.g., fast-forwarding
a videotape may create the same excitement. Hand-apping may simply tell us
that the children were excited at the novelty of a dog. Whether the excitement
ofthedogwouldbesatiatedovertimeisanopenquestion. Unfortunately, self-
stimulatory behaviors such as hand-apping can disrupt therapy and, thereby,
may need to be controlled in order for the child to focus attention to the task at
hand.
The second notable result is that the children responded less to the therapist
when the dog was present, presumably because the dog is more exciting than the
therapist. This ndingmaysupportthecontentionthatachildislessprimedfor
therapy because of the distraction of a dog. What is unclear, though, is whether
excitement is considered pro-social behavior. Excitement over a dog may have
no relationship whatsoever to the prospect of excitement around people, which is
the hope of the Pet-facilitated therapy folks. They essentially hope to use the dog
asthetransitionalobjecttowardarelationshipwithpeople.Wedenedogsas
social animals; children with autism may be reacting to dogs on a whole different
level that may or not be social. Put simply, children with autismmaynddogs
inherently reinforcing due to other doglike properties that may have nothing to
do with canine sociability, such as the way dogs breathe after a run.
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What does the therapy actually look like?
The therapist teaches the child to engage in the care and handling of domestic
animalswithinaclassroom.Oftenthechildrenaretaughttotakeresponsibility
for the daily care routines of the pets.
What else do I think?
I am very skeptical of the term “therapy”inthiscase.Thefactthatanimalsare
useddoesnotdenetheactivityastherapy. When we use toys or food, we do
not say that the therapy is toy-assisted or food-assisted; rather, the therapy may
besuccessfulbasedonalready,scienticallysubstantiatedtechniques.Inthis
case, it appears as though the animals may become reinforcing to the children,
not only because they are different and perhaps exciting, but also because they
have predictable routines which may be intrinsically reinforcing to children
with autism. The concept of a reinforcerhasbeenheavilystudiedintheeld
of behaviorism and may provide a better explanation for the ndingsthanthe
concept of a therapeutic pet. I have no issue with using dogs as reinforcers for
a child. My sense of unease comes from actually calling this a therapy, and I
have nightmares about parents going out to buy a dog because they think that
their child’s autism will be ameliorated in so doing.
Would I try it on my child?
My child has a dog. In fact, she’s had a very well-trained dog for the last ten
years and has a good relationship with her dog. That said, do I think that the
dog has improved her ability to socially interact with other people and would
I purchase the dog with this expectation?Ofcoursenot.OnethingthatI’ve
noticed(apurelyanecdotalobservation)isthathavingadogmakespeoplemore
Section One: What Works and What Doesn’t?
331
likely to approachusandaskherquestions about her dog. In that respect, the dog
indirectly provides her with social opportunities. In addition, I would use the dog
as a reinforcer if I thought that would help her learning. In my daughter’s case,
though,Idoubtthatthedogissufcientlyreinforcingforhersothatitcanbe
used as a reinforcer. In short, the dog does not ameliorate her autism; however,
the dog makes her happy and has enriched her life a great deal.
What kind of study would I like to see the Pet-facilitated
Therapists do?
This group of researchers should either look into the literature on reinforcement,
and publish more explicitly based on that literature(ifindeedtheresearchers
agree that it is the reinforcing nature of the pets that is creating improvement)
or they need to design an experiment whereby the use of an animal is done with
people who do not understand the principles of behaviorism. This would separate
the variables of reinforcementfromthevariableof“pet.”Iftheintroductionof
a pet to children with autism by individuals who make no demands on the child
in a child-led environment, created an increase in social interaction relative to
children in the same situation without a dog, then an argument could be made
that the dog created the social interaction, rather than the adult. The variables
of“pet”and“therapist”musttobeisolated.
Who else recommends for or against Pet-facilitated
Therapists as a method for the treatment of autism?
There has been little written that recommends Pet-facilitated Therapy for
children with autism. As this is not a dangerous therapy(andperhapsbecause
manypeoplethink that everykidshould have adog),thispurported therapy
has been all but ignored by Quackwatch, the Association for Science in Autism
treatment (ASAT) and every other reputable clinical guidelines, such as the
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
332
New York State Department of Health Clinical Practice Guidelines on autism.
The sole organization that has taken interest in this area is the Washington State
University College of Veterinary Medicine’s People-Pet Partnership (PPP)
program. They conduct research aimed at understanding the Human Animal
Bond, which includes the bond between animals and children with autism.5
They approachthistopicfromananimalperspectiveratherthanfromtheeld
of autism research. Although they do not recommend Pet-facilitated Therapy
for children with autism, this is a research interest of theirs.
So you’re still on the horns of a dilemma?
If you are a dog lover and you are willing to spend the money for a specially
trained dog, there is no downside risk to owning an obedient, loving dog.
However, I suggest that you go into this endeavour with realistic expectations
about the therapeutic value of the dog. The experience may be great for your
child; however, do not expect therapeutic results.
What’s the bottom line?
Based on the scienticresearchtodate,thereisinsufcientevidence to conclude
that Pet-facilitated Therapy is an effective treatment for improving the symptoms
associated with autism.
Section One: What Works and What Doesn’t?
333
Endnotes for Pet-facilitated Therapy
1Martin, F., and J. Farnum. 2002. “Animal - Assisted TherapyForChildrenWithP.D.D.”Western
Journal of Nursing Research, Vol. 24, No. 6, pp. 657-670.
2Redefer, L.A., and J.F. Goodman. 1989. “Brief Report: Pet-facilitated Therapy With Autistic
Children.”Journal of Autism and Developmental Disorders, Vol. 19, No. 3, pp. 461-467.
3Redefer,L.A.,andJ.F.Goodman,(seen.2above).
4Martin,F.,andJ.Farnum,(seen.1above).
5WashingtonStateUniversityCollegeofVeterinaryMedicine’sPeople-Pet Partnership(PPP)
program,www.vetmed.wsu.edu/depts-pppp(accessedFeb.21,2006).
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Section One: What Works and What Doesn’t?
335
Miscellaneous Therapies: Sensory
Integration Therapy
What is Sensory Integration?
According to professionals who practice Sensory Integration Therapy (SIT),
people who suffer from autismhavedifcultyinprocessingsensory information
from their environment. I am certain that many of us have likely noticed that
our children seem to be sensitive (to an unusual degree) to certain sensory
information, such as sound, touch or taste. These practitionersdenesensory
information as information we see, hear, feel, taste and smell. They also consider
sensoryinformationtoincludethewayweseeourselvesandourbody“inspace”
and in relation to objects and people. A clumsy person with autism would be
denedbyproponents of SIT as having sensory issues. Those who use Sensory
Integration Therapy as a treatment for autism, describe this techniqueasamethod
to organize the information a person receives so that the person can better utilize.
In their words, Sensory Integrationisdenedas,“Theorganizationofsensory
input for use, [which is to perceive] ...the body or the world, or an adaptive
response, or a learning process, or the development of some neutral function
...”1 Simply put, according to proponents of this intervention method, autism is
a form of sensory dysfunction.
The woman who developed this form of therapy is Ayers. She hypothesizes that
SIT helps a person with autism interact with the environment by coordinating
the central nervous system.2 Ayers claims that in some individuals with autism,
there is a disorder in brain functioning which makes the integration of sensory
stimulidifcult.3Inordertotreatthissensory-specicbrain dysfunction, those
who practice SIT are of the view that treatmentmustrstidentifytheperson’s
neurological needs, and then stimulate the person in accordance with those
needs, to help him or her adapt to this stimulus. In her own words, Ayers sees
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336
the process as “sensory stimulation and adaptive responses to it according to
the child’s neurologicalneeds.”4 Proponents of SIT believe that for individuals
with autism, learning about the environment and how to act within the sensory
world has somehow been disrupted and must be repaired to address the disorder.
These SIT practitioners claim that the sensory approach improves the ability of
children with autism to integrate sensory information.5 Specically,Sensory
Integration therapists believe that the brain has not yet developed the ability
to integrate environmental stimuli. To overcome this problem, therapists adapt
the environment to meet the needs of the individual’s nervous system.Once
the environment is adapted to enable the integration of sensation, proponents of
this intervention method believe that the brain will then be able to reorganize
itself.6 Ayers describes the therapy as follows: “The central idea of this therapy
is to provide and control sensory input, especially the input from the vestibular
system, muscles and joints, and skin in such a way that the child spontaneously
forms the adaptive responses that integratethosesensations.”7
What evidence do the practitioners have that this
really works?
Our comprehensive literature search found over fty articles and books on
Sensory Integration Therapy from 1968 through to 2006. There were additional
articles attempting to test whether children with autism have sensory sensitivity,
but these were excluded because they did not discuss Sensory Integration as a
treatmentforautism.Ofthoseftyarticles, only eleven reported data on SIT as
a treatment for children with autism, including three case studies. There were
a few studies done on children with other diagnoses; however, as these children
did not suffer from autism, these articles were not included. Although it is a
positive step that research is being conducted on this method, most of the studies
were conducted from 1977 to 1992, with three studies published in 1999, one of
which is a case study.8 The most recent data reported on SIT was seven years
Section One: What Works and What Doesn’t?
337
ago(1999),yettherehasbeenmuchheateddebateintheliterature regarding the
qualityofthesestudies.9,10,11
All of these SIT studies are plagued by serious aws.First,onlyoneofthe
studies on SIT uses a controlgroup(afundamentalawinmyview)andwhen
researchers use a Single-SubjectCaseDesign(SSCD),itis notdesignedwith
sufcientcontrols.Withoutsufcientcontrols, either in a SSCD or a between-
subjectdesign(onewithacontrolgroup),theresults of the study can be attributed
to any number of factors that may have nothing to do with the treatment. In other
words, there may be many other variables at play, independent of the Sensory
Integration Therapy(whichistheindependentvariable),thatmayinuenceresults
of the study. The lack of experimental controlsquestions the results found by
all the SIT studies, but particularly those of Cook12 and Ayers.13 Both of these
studies were long-term SSCD studies(Cook’s study was done over two years and
Ayers’ was one year in duration).Therewas nocontrol for maturation effects
(childrendevelopastheygetolder)whichmayhaveproducedimprovements in
subjects merely through aging, as opposed to any connection to the intervention.
In addition, any nding notedbymanyofthe researchers may have been the
result of other variables occurring at the same time as the therapy. For example,
Ray,etal.(1988),14 designed a case study in which a child learned thirteen new
words over a one month period through the use of a swing. We have no way of
knowing whether the swinging motion created these gains, or rather, the positive
reinforcement of using the swing paired with the attention of the person teaching
the words created enough motivation for the child to attend and, therefore, learn
the new words. Put differently, any observed progress of the child cannot be
condentlyattributedtoSIT because other variables may have confounded the
results of the various studies.
Unfortunately, the way these SIT studies measure sensory integrative dysfunction
(thedependentvariable),beforeandafterthetherapy, is also problematic. In all
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338
of the studies, with the exception of Ayers,15 sensory integrative dysfunction(the
dependentvariable)isbeing measured eitherthrough researcherobservation,
parental reporting, or both. I know some of you may be thinking, “What’s
wrong with researcher observation?”Whileobservation is an important tool in
measuring the effectiveness of a treatment, it is very important that the observer
be independent of the research,quantifyingtheobservedbehavior based upon
generallyacceptedscienticprinciplesofresearch.Thisiscrucial,particularly
when there is no control group. If there were an experimental and control group,
then researchers associated with each study could make research observations
using pre-and post measures as long as they did not know who was assigned to
which group in the experiment. Each of these studies violates this procedure
becausenone havea“blind”observer.Parental reportingisalsosuspect(see
thediscussioninSectionTwo)becauseitissusceptibletobias.WhiletheAyers
article uses parental reporting in addition to other measures, these other measures
are also problematic.
Lack of standardizationof“beforeandafter”measures for autism and sensory
dysfunction plague this research. The study conducted by Ayers et al.,16 uses a
variety of measures to test the sensory dysfunction of the child. Some subjects
were measured on motor prociencyandvocabulary, while others were measured
on language or auditory comprehension. Subjects were also measured using the
Ornitzscale,whichmeasures reaction to sensory input. These measures need
to be standardized for each child and several commonly-accepted measures
for autism,notjustsensorydysfunction,arerequired.Anexampleoflackof
standardization is in the Case-Smith17 study, in which ve children undergo
therapy. Improvements noted include the ndingthatfourchildrendemonstrated
“decreasedfrequencyofnonengagedbehavior and that three children increased
theirfrequencyof‘goal-directed’ play.”18 This nding tells us nothingabout
whether autism was ameliorated with SIT. There are many other possible
Section One: What Works and What Doesn’t?
339
explanations for this observation that may be independent of Sensory Integration
Therapy but, rather, may be an effect of the child learning a new repertoire of
play skills based on one-on-one repetitive teaching. In Short, Sensory Integration
needs to be separated from teaching to see whether it is effective. Case-Smith,
et al.,19 dismiss standardized measures as inappropriate due to noncompliance.
Noncompliance is a challenge for many researchersintheeldofautismandisnot
a legitimate justicationforalackofobjectivemeasures. Several standardized
measures could be used in addition to the three measures used by Ayers, such as
a variety of autism rating scales, psychometric testing and measures of adaptive
functioning.
An additional aw in this subeld is the operationalization of autism. It is
essential to examine how the dependent variable, autism, is actually being
measured. In the case of the Ayres article, reaction to sensory input is measured.
Unfortunately, reaction to sensory input does not even begin to measure autism.
Psychometric and language tests are wholly ignored in the SIT literature, as well
as a measure of excesses in behaviors common among children with autism.
In a study done by Grandin,20 she reports a decrease in tense and aggressive
feelingsinherselfwhenusingthe“squeezemachine,”whichshedesignedfor
personal use. Although this is interesting,thequestion remains as to whether the
squeezemachineeffectivelytreats(resolves)behaviordeciencesorprovidesany
improvementsinintellectualoradaptivefunctioning(ifweacceptthendings
thatthesqueeze machine doesingeneralcalmpeoplewithautism).Edelson
etal.(1999)21 attempted to test this hypothesis on twelve children with autism
by randomly assigning subjects to either an experimental or control group.
Although the groups were randomly assigned, the pretreatment mean scores for
the behavioralmeasurewereappreciablydifferentbetweengroups(whichmeans
that there is no utility to doing a between-subject analysis as the groups were
differentattheoutset),andtherewerenotenoughdata points for withdrawing
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340
and introducing the treatment to allow a within-subjectdesignanalysis(asis
common in SSCDs).AlthoughonecouldarguethattheEdelsonetal.22 study
operationalized autism in a meaningful way, i.e., behaviorally(althoughthey
usedaparentratingscalewhichislessreliablethanaprofessionalratingscale),
the above mentioned issues work to exclude their study as evidence to support
the efcacyofSensory Integration Therapy.
Additional lack of operationalization includes the study done by Ayers,23
where she reports a sixty percent “good response”versusafortypercent“poor
response”toSIT. Here she is measuring the subjects’ reaction to stimuli. This
does not address the important, measurable decitsandexcessesofautism. An
additional article by Cook,24 has a similar awinthestudy in that the checklist
usedisspecictosensory dysfunction issues, as opposed to language, IQ gains,
and behavioral gains which are predictive of functioning. The McClure et al.
article(1991)25 measures the level of self-stimulatory behavior and self-injury
in a case study. Behavioral excesses are a problem for many individuals with
autism;consequently,itisaverygoodideatomeasurethesevariables in autism
treatment research. Unfortunately, this study also suffers from some of the aws
discussed above; specically, while the researchers were providing Sensory
Integration Therapy with the self-injurious subject, the subject was also given a
variety of other treatments including medication. McClure et al.25 mention that
these other treatmentsmayhaveinuencedthebehavior of the subject. In short,
the experimenters confounded their study (confused it with other variables),
which renders the datameaningless.Theconfoundingvariableof“medication”
is a crucial piece of information because it tells us that we cannot conclude,
withcondence, whetherornotthetreatment was effective. Finally, most of
the studies were non-rigorous case studies,26,27 which may give us insight into
those individuals being studied, but cannot be used to make any conclusions
whatsoever about efcacyofSITforthebroaderpopulationofchildrenaficted
with autism.
Section One: What Works and What Doesn’t?
341
Confounding variables seem to be a recurring awintheresearch that has been
done on Sensory Integration. The Cook28 and Ayers et al.29 studies do not control
the variable of education. In other words, what other intervention the child may
have experienced prior to the Sensory Integration treatment study is not accounted
for. The results of these two case studies are confounded by the enrollment in
preschool for both subjects, one for two years and one for more than eighteen
months.Therstsubjectreceivedcompliance training in the preschool setting,
at the same time as that child received Sensory Integration Therapy, which could
explain many of the gains he made over the two-year period. Both subjects
were taught using structured activities across, “all domains of development,”30
and the second subject in the study had a one-to-one aide at school. We cannot
conclude that the gains achieved by these two subjects were in any way related
to the SIT they received. They could just as easily be attributed to structured
behavioral intervention.
What does the therapy actually look like?
Sensory Integration Therapy encourages the child to play using different kinds
ofgymequipment.Manyoftheactivitiesthatsensory integration specialists do
usecommonlyavailableplaygroundequipmentsuchasscooters,swings(special
bolsterswingsandtypicalplaygroundswings),andplaygroundmerry-go-rounds.
In addition, they often brush and/or rub the child’s skin to apply sensory stimuli
to the body. Sensory integrationistswillusemanydifferentkindsofequipment
tocreatethedifferenttypes of sensation they require the child to experience.
Those advocating deep pressure stimulation, use a Hug Machine, designed by
Temple Grandin.31Thechildentersthisdeviceandisthensqueezed.
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342
What else do I think?
Based on the studies published to date, we cannot reasonably conclude that
Sensory Integration Therapy is a science-based form of treatment for autism.
Unfortunately, the outcome variables being measured are often irrelevant to the
condition of autism and the results are not supported by rigorous experimental
designs. Many factors basic to conclusive outcomes,suchasavarietyofsufcient
experimental controls, are simply not present. The observation that some children
with autism have sensory sensitivity does not logically lead me to the conclusion
that Sensory Integration Therapy would be effective in lessening the sensitivity,
orevenifitdoes(whichhasnotbeendetermined),thatthissomehowameliorates
the many symptoms of autism.
Would I try it on my child?
I started hearing about Sensory Integration Therapy in 1992, when my child
wasdiagnosed.At that time,there wasinsufcient evidence for the efcacy
of this treatment and the same remains true today. At this point, I do not see
enough evidence to use this method on my child and, although I do not see the
method as extremely harmful, I do see it as taking time away from other more
worthwhilethingsachildrequires.Ifonedaythereisrmscienticevidence
that Sensory Integration Therapy can indeed improve my child’s autism, then
I will most probably try the therapy. Until that day, I will not subject her to
Sensory Integration Therapy.
What kind of study would I like to see the Sensory
Integration people do?
I would like to see a study with at a minimum the following elements: rst,it
is critical to create a hypothesis that states that children who undergo sensory
Section One: What Works and What Doesn’t?
343
integration therapy are more likely to see a decrease in autistic symptoms
compared to those who do not receive this treatment. It is imperative that
commonly accepted tests to measure autism be widely used, administered by a
registered psychologist who has no knowledge of the study. This needs to be done
to ensure that all the children in the study do indeed have autism or Pervasive
Developmental Disorder-Not Otherwise Specied (PDD-NOS). In addition,
each child should be tested on widely accepted psychometric tests, which are
administered before and after the treatment. The psychologist who does the
pre- and post tests, should not know which children are in the treatment group
and which children are in the control group. All the children should be treated
at the same site, including those children in the control group. There should be
at least twenty children per group in the experiment, with at least forty children
total in the study.
The children in the control group could play in the playground for the same
amount of time as the children in the treatment group. They could use typical
playground equipment, creating a placebo (fake treatment) that mimics the
experience of the experimental group in every way aside from the Sensory
Integration Therapy. If replicated results demonstrate that the children in the
treatmentgroupscoresignicantlybetteronthesecommonlyacceptedmeasures,
then we could conclude that this therapy works to ameliorate autism. At this
time we are a very long way from that.
Who else recommends against Sensory Integration as
a method for the treatment of autism?
The New York State Department of Health has the following to say regarding
Sensory Integration Therapy:“Thereiscurrentlynoadequatescienticevidence
(basedoncontrolled studies using generally accepted scienticmethodology)
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344
that demonstrates the effectiveness of sensory integration for young children
with autism. Therefore, the use of this method cannot be recommended as a
primary intervention method for young children with autism.”32 Since the New
York Report was published, there have been several reviews33,34,35 supporting its
original ndings. In addition, the Association for Science in Autism treatment
(ASAT)alsosupportstheviewthatSensory Integrationdoesnothavesufcient
evidence to consider it as an effective treatment for autism.36 Quackwatch37 also
lists this therapyas“questionable.”
So you’re still on the horns of a dilemma?
Smith, et al.38 have written a good, in-depth analysis of Sensory Integration
Therapy and demonstrate that there is no evidence regarding efcacyforthis
treatment method. These researchers have done a great service to the Sensory
Integration research community because they have suggested several study
designs by which Sensory Integration can be objectively tested for efcacywhere
decreasing self-injurious behavior is concerned. These tests desperately need
to be conducted because, at this time, there are thousands of children receiving
Sensory Integration Therapy, despite the absence of convincing evidence that it
works. In short, if you decide to use this therapy for your child, remember you
are engaging in experimentation. There is no excuse for the proponents of SIT
to avoid conducting this research, as other reputable researchersintheeldhave
set out the experimentaldesignrequiredtodemonstratewhetherornotSensory
Integration Therapy is truly effective. For a spirited discussion in the literature
on this controversial therapy,Goldstein(2003)39 is worth a read, as is the Smith et
al. chapter in Controversial Therapies for Developmental Disabilities(2005).38
Section One: What Works and What Doesn’t?
345
What’s the bottom line?
Based on the scienticresearch to date, there is not enough evidence to show
that Sensory Integration Therapy is an effective treatment for improving the
symptoms associated with autism.
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Endnotes for Sensory Integration Therapy
1.Ayers, A.J. 1979. Sensory Integration and The Child. Los Angeles, CA: Western Psychological
Services.
2Ayers,A.J.,(seen.1above).
3Ayers,A.J.,(seen.1above).
4Ayers,A.J.,(seen.1above).
5Cook, D.G. 1991. “ A Sensory Approach to the Treatment and Management of Children With
Autism.”Focus on Autistic Behavior. Vol. 5, No. 6, pp. 1-19.
6Ayers,A.J.,(seen.1above).
7Ayers,A.J.,(seen.1above).
8Stagnitti, K., P. Raison, and P. Ryan. 1999. “Sensory Defensiveness Syndrome: A Paediatric
Perspective and Case Study.”Australian Occupational Therapy Journal, Vol. 4, No. 46, pp.
175-187.
9Dawson, G., and R. Watling. 2000. “Interventions to Facilitate Auditory, Visual and Motor
Integration in Autism: A Review of the Evidence.” Journal of Autism & Developmental
Disorders, Vol. 30, No. 5, pp. 415-421.
10Goldstein, H. 2000. “Commentary: Interventions to Facilitate Auditory, Visual and Motor
Integration: ‘Show Me The Data’.”Journal of Autism & Developmental Disorders, Vol. 30,
No. 5, pp. 423-425.
11Edelson, S.J., B. Rimland, and T. Grandin. 2003. “Commentary: Response to Goldstein’s
Commentary: Interventions to Facilitate Auditory, Visual and Motor Integration: ‘Show Me
The Data’.”Journal of Autism and Developmental Disorders, Vol. 33, No. 5, pp. 551-552.
12Cook,D.G.,(seen.5above).
13Ayers, A.J., and L.S. Tickle. 1980. “ Hyper-responsivity to Touch and Vestibular Stimuli as a
Predictor of Positive Response to Sensory Integration Procedures by AutisticChildren.”The
American Journal of Occupational Therapy, Vol. 34, No. 6, pp. 375-381.
14Ray, T.C., L.J. King, and T. Grandin. 1988. “The Effectiveness of Self-initiated Vestibular
Stimulation in Producing Speech Sounds in an Autistic Child.” The Occupational Therapy
Journal of Research, Vol. 8, No. 3, pp. 186-190.
15Ayers,A.J.,andL.S.Tickle,(seen.13above).
16Ayers,A.J.,andL.S.Tickle,(seen.13above).
17Case-Smith, J., and T. Bryan. 1999. “The Effects of OccupationalTherapy With Sensory
Integration Emphasis on Preschool-Age Children With Autism.” The American Journal of
Occupational Therapy, Vol. 53, No. 5, pp. 489-497.
Section One: What Works and What Doesn’t?
347
18Case-Smith,J.,andT.Bryan,(seen.17above).
19Case-Smith,J.,andT.Bryan,(seen.17above).
20Grandin, T. 1992. “Calming Effects of Deep Touch Pressure in Patients with Autistic Disorder,
CollegeStudentsandAnimals.”Journal of Child and Adolescent Psychopharmacology, Vol.
2, No. 1, pp. 63-72.
21Edelson, S.M., D. Arin, M. Bauman, S.E. Lukas, J. H. Rudy, M. Sholar, and B. Rimland. 1999.
“Auditory Integration Training: A Double-Blind Study of Behavioral and Elecrophysiological
Effects in People with Autism.”Focus On Autism and Other Developmental Disabilities, Vol.
14, No. 2, pp. 73-81.
22Edelson,S.M.etal.,(seen.21above).
23Ayers,A.J.,andL.S.Tickle,(seen.13above).
24Cook,D.G.,(seen.5above).
25McClure, M.K., and M. Holtz-Yotz. 1991. “The Effects of Sensory Stimulatory Treatment
on an AutisticChild.” The American Journal of Occupational Therapy, Vol. 45, No. 12, pp.
1138-1142.
26Larrinton, G.G. 1987. “A Sensory Integration Based Program with a Severely Retarded/Autistic
Teenager: An OccupationalTherapy Case Report.”Occupational Therapy in Health Care, Vol.
4, No. 2, pp. 101-107.
27Stagnitti,K.,P.Raison,andP.Ryan,(seen.8above).
28 Cook,D.G.,(seen.5above).
29Ayers,A.J.,andL.S.Tickle,(seen.13above).
30Cook,D.G.,(seen.5above).
31Grandin,T.,(seen.20above).
32Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendations.
Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children
(age0-3years).Albany,NY:New York State Department of Health, p. IV-60.
33Dawson,G.,andR.Watling,(seen.9above).
34Goldstein,H.,(seen.10above).
35Baranek, G.T. 2002. “EfcacyofSensoryandMotorInterventions for Children With Autism.”
Journal of Autism and Developmental Disorders, Vol. 32, No. 5, pp. 391-422.
The Complete Guide to Autism treatments: Make Sure Your Child Gets What Works!
348
36Association for Science in Autism Treatment(ASAT),www,asatonline.org/about-autism/autism-
info12.html,(accessedFeb.16,2006).
37Quackwatch, www.quackwatch.org,(accessedFeb.16,2006).
38Smith, T., D.W. Mruzek, and D. Mozzingo. 2005. “Sensory Integrative Th erapy.” In:
Controversial Therapies for Developmental Disabilities. J.W. Jacobson, R.M. Foxx, J.A. Mulick.
Mahwah, NJ: Lawrence Erlbaum Associates, pp. 331-347.
39Goldstein, H. 2003. “Response to Edelson, Rimland, and Grandin’sCommentary.” Journal of
Autism and Developmental Disorders, Vol. 33, No. 5, pp. 553-555.
Section One: What Works and What Doesn’t?
349
Miscellaneous Therapies: Vision Therapy
What is Vision Therapy?
The use of Vision Therapy in autism treatment stems from the concept that people
with autism are not social because they experience visual dysfunction. In other
words,theirvisionissomehowbeingdisturbed.The“ambient”visual system,
whichissaidtoberesponsiblefortheperceptionofspace(andtherebymovement,
depthperceptionandpositionofone’sbodyinspace),isthoughttobeimpaired
insomepersonsafictedwithautism. Symptoms experienced by people with
autism, such as toe-walking, abnormal posture, head tilts and abnormal gaze, are
claimed by Vision Therapy researchers to result in the person with autism being
unable to experience normal vision. According to these researchers, they do not
have, “an integrated visual precept of events and objectsintheirenvironment.”1
From this theory, these researchers claim that this impairment results in the
individual being unable to recognize the consequencesoftheiractions,dueto
the inability to track their own position in space.
Vision Therapy is conducted by having the autistic person wear special “ambient
lenses”which arethoughttoimproveposture, correct head tilts, and improve
coordination in such activities as catching a ball. According to Kaplan and
colleagues, “the symptoms demonstrated by autistic children may be an adaptation
to an ambient visual system that has distorted the appearance of the spatial
environment.”2 By using these special glasses, the purported distortion of vision
is claimed to be lessened or eliminated.
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What evidence do the practitioners have that this
really works?
After a comprehensive literature search, eight articles on Vision Therapy relating
to autismwere found.Ofthoseeightarticles,onlytwostudies involving the
use of prism lenses for individuals with autism report any outcome data. The
rststudy was weak; however, the second study corrected many of the awsof
therststudy.
Publishedin1996,therststudy is a within-subjectsdesign,inwhichtherst
author recorded data based on the use of the lenses. This introduced the possibility
of experimenterbiasinuencingtheresults, as it is generally accepted that the
person who designs the study and predicts the outcome should not be collecting
the data; rather, someone who has no knowledge of the research hypothesis
should be involved in data collection. In addition, these researchers did not
use a standardized behavioral measure to measure behaviors. They did not
include a measure of behaviors such as self-stimulatory and/or self-injurious
behaviors, among others, which are characteristic of the autistic population. The
measures they did use are typically not representative of children with autism.
Specically,theymeasuredbehaviorsintherststudy by observing children
watching television with correct or incorrect prisms and describing the head
position(erect,slantedbackward,slantedforward,ortiltedto theside),body
posture(erect,slantedbackward,slantedforward,ortiltedtotheside),andfacial
expression(fromhypertensetorelaxed).Inaddition,theymeasuredhowwell
the children caught a ball when seated. In short, there was no measurement of
behaviors that are typically considered characteristic to autismanddenethe
diagnosis of autism.
The second study conducted by Kaplanandhiscolleagues(1998),althoughawed
as well, is a vast improvementovertherststudy. The experiment is a double-
Section One: What Works and What Doesn’t?
351
blind,crossover designwithtworandomly-assignedgroups (seeSectionTwo
foradiscussiononthistypeofdesign).Anotherimprovement was the addition
of a dependent variable assessment of behavior, as measured by the Aberrant
BehaviorChecklist(ABC).Thisassessment was used before, during and after
each of the four phases of the experiment. This improvement provided the
researchers with an opportunity to see behavioral differences at different points
to be used for comparison. Unfortunately, the ABC measure was used by the
child’s parents to report behavior(and,bythistime,youallknowwhatIthink
about parental reporting!).Despitemycriticisms regarding the ABC measure
for autism, these improvements in methodology were necessary in order to better
assess the effects of “prism lenses”onautism. The researchers did not use any
other traditional autism measurement tool alongside the ABC, and although the
Aberrant Behavior Check list is an accepted measurement tool, it was designed to
be used on moderately to profoundly retarded people, not children with autism.3
In short, this measure was not designed to gauge improvement in autism through
the application of special eye glass lenses.
The results of the second study found no signicantchangesinorientation and
attention, as measured by their four performance tasks of ball catch, television
viewing while seated, television viewing while on a balance board, and visual
ball tracking. The results of this second, better-designed study, contradict the
resultsoftherstpoorly-designedstudy(althougheveniftheydid see changes
in their measures, these researchers have not established the relevance of their
measuresastheyapplytoautism).
In terms of behavioral improvement, the resultsarequiteperplexingandclose
to meaningless. Based on the ABC scale, behavior showed an interesting
trend by decreasing for two months and then increasing!* In other words, the
*Thisresultwasstatisticallysignicant(p<.05).
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children’s behavior improved slightly for two months and then deteriorated for
twomonths.Thereareseveralquestions that need to be answered in order to
interpret these results. First, did the children’s behavior improve as a result of
the Vision Therapy “prism lenses,” or did their behavior improve for another
reason that is not readily apparent to us? The researchers claim that the special
glasses actually created an improvement in behavior. It is important to state that
the improvementwasactuallyquiteminuscule,partiallybecausethesesubjects
had very few behaviorproblemstobeginwith(scoringatbase-line less than one
point on a four point scale, with zero indicating no behavioral issues and three
indicating severe behavior).Thelargest difference between research groups was
lessthanonepoint(0.45difference).Althoughstatisticallysignicant,itisso
small that it is virtually meaningless in terms of improvement for the person with
autism.Inotherwords,thevecategoriesofbehavior problems – irritability,
lethargy, stereotypy, hyperactivity, and excessive speech – improved by a mere
0.45 of a four point scale and this tiny improvement disappeared by the fourth
month of the study.
Do we have any alternative explanations for this observed, small, short-term
decrease in problematic behaviors?Onepossibleexplanation could be that the
children in the experimental group were intrigued with the novelty of the glasses
astheyweresomewhatdifferentfromtheregularglasses(andtheyperceived
theglasses assomehowinteresting).Inshort, thenoveltyoftheglassesmay
have affected their behavior, but the effect diminished over time. Unfortunately,
the researchers do not report the pre-and post scores of the ABC measure for
each subject. Therefore, the reader cannot decide whether the difference is
meaningful for even one child, in terms of the autism-related problems which
affectthechild(asweareonlypresentedtheaveragescores per condition and
notthescoreforeachchild).
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An additional awwiththestudy is that there were originally twenty-three autistic
personsscheduledtoparticipateintheresearch.Fiveofthetwenty-three(threein
the experimental group and two in the controlgroup)didnotparticipatebecause
they refused to wear the glasses or would break the glasses. Those children with
the worst behavioral problems may not have participated. This self-selection
concern is not terribly problematic because the study is a between-subjects design.
However, if the ABCmeasureisnotasufcientlysensitiveinstrumenttopickup
differencesindegreeofautism,andthevepeoplewiththemostproblematic
behaviors are excluded from the study, then the ABC may not accurately assess
the effect of the behavior of the persons with autism who remain in the study
because they have few behaviors. Ironically, if indeed the prism glasses do have
an effect, then the effect would be larger if the children with greater behavioral
excesses were included in the study.Unfortunately,theywerenot,signicantly
diminishing the value of the study.
What does the therapy actually look like?
The therapysimplyrequiresthatthepersonwearthe“prismlense”glassesmuch
like we wear regular eye glasses for daily living.
Would I try it on my child?
At this point, I would not try this on my child. There are major awsintheVision
Therapy study, including the use of parental reporting on the ABC scale to gauge
behavioral problems. The results of behavioral regression are unexplained and
the socialsignicanceofthendingsisquestionable.
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What else do I think?
Although I was encouraged to see that the vision researchers use a between-
subjectsresearch design(rare inthe world ofautism research),arguablythe
biggest issue with the use of Vision Therapy for individuals with autism is the lack
of connection between improved vision and autism. Autism cannot be assumed
to be a disorder where the cause lies purely in visual dysfunction. While the
causesofarremainsunknown, there is insufcient evidence to conclude that
visionaloneisimpairedamongstpersonsafictedwithautism. Using dependent
measures such as the ability to catch a ball, and the ability to improve posture, do
not even begin to address the serious and often debilitating symptoms of autism.
Improved vision in a child with autism may have no relationship whatsoever
to improving the degree of autism and common aspects of the disorder, such as
self-stimulatory behavior, self-injury, and difcultiesincommunication.Other
studies observe the ability of a child to better reproduce a grid pattern.4 Why
the ability to reproduce a grid would in itself be considered relevant to autism
is also unclear.
Based on the evidence to this point, I cannot conclude that prism lenses
ameliorate the symptoms of autism. While minimal improvement in behavior
(asmeasuredbytheABC)istemporarilyseenforapproximatelytwomonths,
these improvements appear to be diminished at follow up. It is necessary to
provide further research on the longer-term effects of this intervention.
What kind of study would I like to see the Prism Lenses
researchers do?
I would like to see a study that includes the replication of the Kaplan, et al.
(1997),witharandomly assigned experimental and control group, much like
the one these researchers already have; however, more subjects per condition
Section One: What Works and What Doesn’t?
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are necessary, particularly because researchers claim to have observed minimal,
short-term results. A larger study would be able to more easily recreate those
results, if they are real. In addition, the researchers need to give the subjects pre-
and post tests which measure autism more accurately and do not rely on parental
reporting. Ideally, a psychologist with no knowledge about the experiment,
but with experience in administering a variety of well-accepted, psychometric
assessment measures, should administer the tests. Among those tests, ideally there
should be some standardized IQ tests to measure improvement in the subjects.
Finally, I would like to see this study done over a considerable length of time, to
ensure that if, indeed, there is an effect, the effect is measurable. If there is no
effect, we could make a clear statement discarding this treatment method from
the long list of treatment options for autism.
Who else recommends for or against Vision Therapy as
a method for the treatment of autism?
The treatment of autism using prism lenses was never very popular; however,
Vision Therapy has been offered for a number of years to people with a variety
of ailments and learning disabilities. For a history of Vision Therapy in general,
the ScienticReviewofMentalHealthPractice(SRMHP)presentsasummaryof
the many remarkable claims of vision therapists through the ages. The SRMHP
also touch on autism: they do not recommend Vision Therapy as a treatment
option for the disorder.5
So you’re still on the horns of a dilemma?
Ten years ago there was considerable interest in Vision Therapy among parents
of children with a variety of learning disabilities.Consequently,theAmerican
AcademyofPediatrics,theAmericanAssociationforPediatricOphthalmology
andStrabismusandtheAmericanAcademyofOphthalmologyjoinedforcesand
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created a joint policystatementwhichdeclares:“Noscienticevidence exists for
the efcacyofeyeexercises(“vision therapy”)ortheuseofspecialtintedlenses
in the remediation of these complex pediatric neurologicalconditions.”6 Although
this was not written for autism, the arguments used by those promoting Vision
Therapy are the same as those applied to learning disabilities in general.
What’s the bottom line?
Based on the scienticresearchavailabletodate,thereisinsufcientevidence to
show that Vision Therapy is an effective treatment for improving the symptoms
associated with autism in children.
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Endnotes for Vision Therapy
1Kaplan, M., D.P. Carmody, and A. Gaydos. 1996. “Postural Orientation Modications in
Autism in Response to Ambient Lenses”Child Psychiatry and Human Development, Vol. 27,
No. 2, pp. 81-91.
2Kaplan,M.,D.P.Carmody,andA.Gaydos,(seen.1above),p.83.
3Aman, M.G., N.N. Singh, A.W. Stewart, and C.J. Field. 1985. “The Aberrant Behavioral
Checklist: A Behavior Rating Scale for the Assessement of Treatment Effects.” American
Journal of Mental Deciency, Vol. 89, No. 5, pp. 485-491.
4Lovelace, K., H. Rhodes, and C. Chambliss. 2002. “Educational Applications of Vision Therapy:
A Pilot Study on Children with Autism.”Resource in Education, ERIC/DGE 458766.
5ScienticReviewofMentalHealthPractice(SRMHP),http//www.srmhp.org/archives/vision-
therapy.html,(accessedNov.5,2006).
6AmericanAcademy of Pediatrics, AmericanAssociation for Pediatric Ophthalmology and
Strabismus, and AmericanAcademy of Ophthalmology. Joint policy statement: Learning
Disabilities, Dyslexia and Vision, http//www.aao.org/member/policy/disability.cfm, (accessed
Feb.16,2006).
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Section Two: How Do We Know What Works and What Doesn’t?
Section Two
How Do We Know
What Works and
What Doesn’t?
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Section Two: How Do We Know What Works and What Doesn’t?
Section Two introduces the reader to the basic rules that the scienticmethod
relies upon to evaluate autism treatments in Section One of this book. This
section is written in a straight forward, user-friendly way so everyone can access
the knowledge tools necessary for the evaluation of autism treatments. This
section talks not only about the scienticmethod, but also gives the reader an
introduction to the process by which science is funded and how bias can easily
creep into research if proper precautions are not taken to separate the inuence
of the funders from the scientists. Aside from the politics of research, this
section describes what comprises the scienticmethod and how it is different
from pseudo-science, which is often relied upon by purveyors of unsubstantiated
treatments.Iaddresstheimportanceofunderstanding:(1)theroleoftheory;(2)
how theory motivates research,and(3)ifyoudonotunderstandwhatatheory
is supposed to do, how you can potentially be hoodwinked — convinced that a
treatment is effective when there is in fact no data supporting that treatment. I
describe how we use science to move closer to the truth which, in our case, is
vital to our children’s futures.
Next, I give you the tools to be able to analyze a study. Then, I lay bare the large
number of pitfalls with which poor research is plagued, so you will be able to
identify those potholes. Furthermore, once we know what the study shows us
about autism, I discuss how, when and whether the results of the study can be
generalizedtothepopulationofchildrenafictedwithautism.Ialsodiscussthe
important role of repeating studies(replications)forthegoalofapplyingresults
to the real world. That would include your child, which is, presumably, why
you are reading this book!Moreover,youareprovidedwithalistofred-ags
to watch out for when evaluating autism treatments. The goal of this section is
basically to inoculate you from incompetent researchers or illegitimate purveyors
of autism treatment and, thereby, protect your child with autism from the quackery
thatrunsrampantintheeldofautismtreatment.Finally,youwillbeableto
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Why care about science?
The ScienticMethod is a solid, time-tested, reliable way to uncover evidence
to support or refute an idea. In practical terms, the scienticmethod can protect
you from wasting your child’s time and your money. Regarding autism, some
ineffective treatmentsareveryexpensiveandmanymaybankruptyouquickly.
In addition, using science to analyze treatments can protect your child from
physical harm. Some treatments are actually physically invasive, such as
experimental brain surgery. The scientic method can also protect you from
wasting your child’s opportunity to get effective treatment. Some treatments
are not intrinsically harmful; however, they waste your child’s precious time
when they preclude the child from receiving treatment that is truly therapeutic.
Therefore, these treatments are indirectly harmful. Using science to analyze
treatments can also protect you from turning your family’s life upside down.
There is a collection of unproven treatments that are not harmful per se, but simply
an enormous burden to incorporate into the life of your family. Science can help
you avoid implementing these ineffective treatments on your child. Another group
of treatments are not expensive and burdensome and, therefore, not a serious
threat to the well-being of your child; however, they have no science behind them
and, therefore, may be of no value whatsoever. All the above reasons illustrate
how important it is to know the effectiveness of a treatment before choosing to
implement it with your child. In other words, in order to truly improve your
child’s condition, you need to know whether there is science behind the method
you are considering to use with your child.
understand the analysis of the science behind all the popular autism treatments
presentedintherstsectionand,hopefully,beabletoapplyprinciplesofthe
scienticmethod to the next big autism treatment fad that comes your way.
2.1
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Why we can’t always rely on experts
There are several reasons why experts(andpurportedexperts)maynotalways
be a good source of knowledge. There are many experts in the eldwhoare
tremendously important for children with autism. However, the parent is not
alwaysinthebestpositiontojudgewhethertheso-called“expert”trulyisan
expert or whether the self-anointed expert is simply out to sell a product or service
that the expert wants the parent to buy. Experts may not be a good source of
informationbecause:(1)theymaynotknowthestateofthescience in autism
treatment;(2)theymaynotvaluescience;(3)personaladvancement in academe
may trump qualityconcerns,and/or(4)theirmotives may not be pure as in the
caseofgold-platedquackery.
“Experts” do not always know about science
Therstquestionyoumustaskis:“Whoaretheseso-calledexperts, and where
istheir expertise?” There aremany peoplewho work withautistic children
who may be experts in their individual elds;however,mostofthemdo not
know how to properly evaluate scienticresearch.Therefore,ifaparent asks
an autism therapist or consultant about a variety of treatments or cures, most of
themwilltypicallynotbequaliedtotellyouaboutthestateofthescience in
autism treatment. Put simply, they do not know how to evaluate knowledge
claims and the studies supporting those claims. This is true for most therapists
and consultants who provide treatments that are not science-based as well as many
of those who actually provide science-based treatment. They may be intimately
familiar with their subeld,buthavenotdonetheresearch or do not have the
skills to evaluate autism treatment in areas where they do not work.
2.2
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They may not value science
There is yet another subgroup of treatment professionals who do not think that
their method can be scienticallyprovenbecauseitcannotbemeasured. This
group desperately wants sticklers for scienceto“compromise”onthescience. I
recently went to a conference where an experimental treatment was introduced
and the accompanying books and videotapes were available for sale. When I
challenged the author privately about the fact that there is no evidence regarding
this method and that if she really wanted to improve this eld,shewouldtryto
convince those pushing the treatment to do some research. She asked me this
question:“Can’tyoubendalittleonthescience?”Clearly,scienticevidence
isnot importantfor some autism“experts;” yet theirpresentations attempt to
appear very science-based. This particular lecture was introducing a biomedical
treatment and the lecture consisted of a multimedia production supported with
many charts, graphs and computer-generated brain animations.
Advancement trumps quality concerns
In a researcher’s life, the cliche “publish or perish” is absolutely true. The
more researchers publish, the better for their careers. A long list of academic
publications can lead to a permanent position at a university (tenure), more
respect in their eld,moregrants and the likelihood that those researchers will
push the eldforward.Infact, I am familiar with one department in which there
was actually debate about linking salaries to amount published and docking
professors if they did not pump out enough publications!
There is obviously something that the “publish or perish” doctrine fails to
capture — quality of research and quality of publication. Every eldhasits
top journals where researcherstrytogetpublishedinrst.Whentheyfail,they
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attempt to publish in second or third tier journals that may lack the prestige of
the preeminent journals. The qualityofthejournal is based on the quality of
the editorial board, which decides the research papers to accept and the ones to
reject. Journal qualityistiedtoacademicadvancement; researchers understand
this point but parents often do not. As parents of children with autism, we must
also understand the advancement dynamic within the university; otherwise, we
will take any study that has simply been published anywhere and assume that
it has been done correctly and reviewed by others who know how to evaluate
research properly. Unfortunately, this is often not the case; there are some very
low qualityjournals and newsletters which publish any and all information on
autism,accurateornot.Remember,allanyonerequirestosetupapublication
is a computer with publishing software. A researcher does not need a licence,
justalotof“chutzpah.”Inshort,researchersneedtopublish:consequently,
many will try to publish their studies wherever they are able, even if the studies
are poorly designed or executed and the publications are of similarly dubious
quality.
Some experts’ motives are not always pure
In addition to the serious problem that many treatment professionals lack expertise
in the scienticmethod, we know that some treatment professionalsprotfrom
the treatment they recommend; therefore, they are loathe to point out the lack
of science regarding their method because then you will not buy their product or
purchase their services. I have found this to be often the case when treatments
are sold with glossy brochures and testimonials from other parents, describing
how the treatment purportedly changed their child’s life. It is important not to
beimpressedby very well-dressed,articulate,andcondent public speakers.
The demeanor of the speaker has nothing to do with whether or not there is any
bonadedatasupportingthetreatment being sold.
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So hang on, É here we go.
For the above reasons, you need to be able to evaluate autism treatments by
looking at their scienticevidence, or discovering their lack of scienticevidence.
In short, please learn the phrase, “Show Me the Data”and know whattodo
once you see the data. To summarize, you need the power to be able to evaluate
the treatment without the editorializing or persuasion of others. Although
professional incompetence is not nearly as morally upsetting as professional
greed,itisnonethelessequallyasdangeroustochildrenwithautism. We parents
are a desperate bunch who are thirsting for a cure; however, remember the moral
of the story — Bad Data is Worse Than No Data.
The scientific method versus pseudo-science
To differentiate between real science and pseudo-science, it is crucial to
understand the purpose of science and what rules scientists must follow in order
for science to tell us anything meaningful. Put simply, science is the way to
uncover facts and genuine relationships. The scienticmethod is simply a group
of rules that, when followed precisely, can help us discover facts about whatever
we are studying. In the case of autism, science can help us discover and test
treatments for autism, and be able to know whether those treatments work.
Science is the way to test the many claims made by others. In the same way as
biologists use the rules of the scienticmethod to uncover facts about the natural
world, so do sociologists and psychologists use the same method to uncover
facts about the social world or about aspects of human behavior. In the case
of autism treatment, science can test treatments claimed to work by one group
of researchers, and see if indeed the claims of those scientists are correct. Put
simply, in the same way as the scienticmethod is the underpinning of western
civilization’s technological base including modern medicine, researchers in
autism must also use the scienticmethodtoacquire(andsubstantiate)abetter
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understanding of autism. Using the scienticmethod, researchers can uncover
relationships that exist, i.e., treatments that improve or ameliorate autism, and
then other researchers can test those relationships to make sure they exist. When
others test those relationships, they can replicate the studies to see whether
the resultstherst scientist found willoccur again(thattheresultsarereal).
Noteworthy in this discussion is that experiments are the only reliable way to
determine whether a treatment really works. Shortly, you will learn much more
about how experiments work, as they are key to evaluating autism treatments.
Thequestionboilsdowntothis:Howcanwetellthedifferencebetweenpseudo-
scienceandthe “Real Deal”?The bestwaytoknow the differencebetween
science and pseudo-science(oroutrightfraud)istolookattherules and how
they may have been broken. When researchers are engaged in pseudo-science,
there are generally three rulesthattheybreach.Herearethengerprints:
Rule 1: The results of an autism treatment study must be observable
by someone other than the original researcher(s).
Put another way, an observation needs also to be seen by someone else. Therefore,
if a researcher claims that a child with autism has improved, other people need
to objectively see the same improvementatthe sametime.Otherwise,asfar
as science is concerned, the improvement claimed never happened. In pseudo-
science, only the original researchers can “see” the results.
Rule 2: An independent researcher must be able to reproduce
results of the original study.
The second ruleisarelativetotherstrule. Any result observed in research
must be reproducable by somebody else. In other words, a different researcher,
using the same methodastherstresearcher, should be able to come up with
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similar results. Replicationisa“mustdo”forthescienticmethod in general,
and important for autism treatments in particular, because there is so much fraud
being perpetrated against parentsandtheirafictedchildren. In pseudo-science,
no one can replicate the results except the same researchers. This is a big red
ag.
Rule 3: The researchquestion must have a way that it can be
disproven.
Allresearchquestionsthatarebeingaskedmust,theoretically,haveawayby
which they can be proven wrong. Put simply, the scientist needs to be able to
describe a scenario or situation where his or her hypothesis is not supported.
For example, if the theory states that giving vitamin B6 and magnesium to
a child with autism will decrease the symptoms of autism (those symptoms
measuredobjectively),then thescientist must also describe what will happen
if the theory is wrong. In other words, what is it going to look like if vitamin
B6 and magnesium treatment doesn’t work. In pseudo-science, every incorrect
result is either explained away or simply ignored.
Every result that does not support the original researcher’s prediction is dismissed
by delegitimizing a second group of researchers that may have found contrary
ndings.Itisdifculttodismissnegative ndingspublishedinpeer-reviewed
journals; however, it still occurs on a regular basis because there is a fortune to
be made by offering unsubstantiated autism treatment services, even when they
havebeenscienticallydiscredited.
Pseudo-science is non-science dressed up to look like science. Pseudo-science
uses an impressively large vocabulary; tables and graphs are used, typically by
people with MDs and/or PhDs behind their names, often in different eldstothe
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one being researched. In autism research, there are many examples of dentists,
nurses and general practitioners(insteadofneurobiologists)doingbrainresearch
or providing unsubstantiated autism treatments. It is important to make sure
that those doing the research have an MD or PhD in a eldrelatedtothekind
of research being conducted. I have seen very sophisticated presentations by
people who have absolutely no background in the area in which they are working,
and who also often do not understand the scienticmethod. These experts will
oftentellyouthat,intheirprofessionalopinion,aspecictreatment is effective.
Bona-descientistswillnotponticate,usingonlytheiropinion,withoutbacking
up their position with hard data. In short, pseudo-science breaks the rules of
the scienticmethod but it cloaks the research in symbols of legitimacy using
persuasive techniquesmorecommontoadvertisingthanscience.
Atypicalredagforquackeryistheuseofsophisticatedmultimediatechniques.
When presentations are too slick and technical, in a showy Hollywood fashion,
do not be impressed. A brain scan tells us nothing about how much data(ifany)
the researcher has gathered. In fact, the slicker the graphics and animations,
the more money the researcher likely has to waste on expensive animations. As
grantmoneyishardtocomeby,bonadescientistsdonotusuallysquanderiton
glossy brochures and multimedia presentations. They generally use simple slides
anddonotappeartobe“selling”thetreatment. Academic researchers are also
generally tentative in making the claims that they do make. The reason for this is
thattheyfollowthescienticmethodwhichsupportsahealthydoseofskepticism.
Science can provide evidence that a treatmentworks(sometimesasmallamount
of evidence, other times a compelling amount of evidence);however,scientists
donotliketosaythattheyhaveactually“proven”thatatreatment works. They
will generally say that the evidence supporting the treatment is strong or weak,
but will not usually refer to their researchas“proof.”
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Using the scientific method to protect your child
As an intelligent and savvy consumer, you have a right to see any and all
scienticevidence which either supports or negates the claim that an autism
treatment is effective. Before starting any treatment, as the parent you should
ask for a bibliography of academic journal articles published on the method
by the practitioners recommending or providing the service. If the “experts”
on any particular methodcannotgiveyouanyofthematerialthatyourequest,
chancesarethere’snotscienticevidence available yet to support their claims
that the treatment ameliorates autism. Your answer as to whether this method is
scientically-supportedistheneasy.Inotherwords,nodataequalsnoscience
in support of the so-called treatment method being touted by the so-called expert.
Most fringe treatment methods will not have any science behind them, which
makes evaluating them relatively easy.
What if the treatment method is too new for data
collection?
If a treatment method is new, you have the option to wait for supporting evidence.
Those practitioners of the method should be working on a study to test the method,
prior to offering it to the public. At this point, you can always sit back, keep
your money in the bank and wait for the data.Occasionally,thereareeffective
treatments that need more scienticscrutinyandtheparent may only wait a short
time; however, this is rare. In my personal experience as a parent waiting for
good data to substantiate a variety of treatment methods, it is rare that after ten
orfteenyearsofhearingaboutatreatment method,ascienticstudyisdone,
and the treatment method is suddenly supported by qualitydata. The opposite
is more often true. More typical is the scenario where a method which is not
scienticallysupportedisusedbymanyparents. Finally, a reputable researcher
will actually test the methodandndthatthereisscienticevidence to show the
method is completely ineffective.
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The lag time between discovering a promising treatment which actually works
on children and having that treatment scienticallytestedisoftenshortbecause
sciencemovesveryquicklywhenitlooksasthoughthereisrealpossibilityfor
a new discovery. At this point, many researchers jump in and compete to see
whocanndthesignicantresultsrst.Agoodexample of this phenomenon
is the large number of researchers looking for the gene(s)forautism. Ten years
ago, there were only one or two university research programs targeting autism.
Today, there are research groups around the world competing in this area because
the chances that a discovery may occur are good.
What does take a considerable amount of time, however, is a treatment that must
rstbetestedonanimalsinthelab.Thistypeofresearchisdifcultbecauseitis
hard to approximate autisminratsormonkeys(althoughresearchers are working
thisproblem).Research that uses animal models does not typically suffer the
problems of pseudo-science or quackeryas,generally,theseresearchers do not
prematurely offer treatments for autism; rather, they painstakingly and responsibly
research autism to be able to eventually treat the disorder biochemically. These
researchers do not regularly offer half-baked treatments and, therefore, I address
them only in passing.
What about anecdotes? Can we use them at all?
What is the role of anecdotal evidence in autism research? For our purposes,
an anecdote is dened as a personal story or observation about how a child
purportedly improved when he was given a particular type of treatment. The
questionis this: can we legitimatelyuseanecdotes inscienticresearch for
autism treatment or is it just a waste of time?
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Onemightbesurprisedtoknowthatanecdotes are actually very useful if used
correctly, but disastrous if used incorrectly. Scientists use anecdotes to start
thinking about questions to research — that is a good use. In other words,
anecdotes can motivate science. Think about all the surprising ndingsthathave
been discovered by chance or by scientists simply having hunches. Hunches
are great to start scientists thinking. Although the hunch may be caused by an
anecdote, that’s where its usefulness ends. In short, once the researchquestion
is developed, then the role of the anecdote is over. An anecdote gives a scientist
an interesting idea to study. Researchers do not jump to conclusions the minute
they suspect an interesting relationship.Onthecontrary,theysetupawaytotest
their hunch, according the generally-accepted principles of sound research.
Unfortunately, many parents use anecdotes in a disastrous way. We hear a
story from a friend, see a news piece or read an autobiography and then start
administering the treatment to our child. Children are not well-served through
this use of anecdotal evidence, and neither is science. In addition, this is the way
to create considerable and unnecessary hardship in both the life of the parent
and child.
Let’s illustrate this point with the following scenario: a scientist goes to
Thanksgiving dinner at her friend’s house every year, for years, and sees that
David, a child with autism at the same thanksgiving dinner, becomes lucid. He is
attentive, talks to people, sits appropriately and is the model child. After a few
years of observing this interesting change in behavior, the scientist wonders if
the improvement in behavioriscausedbythefoodthechildiseating,specically,
the tryptophan in the turkey? The scientist proceeds to design an elaborate
experiment to test this possibility. She happens to mention this to her friend,
David’s mother. What do you think David’s mother does? I’m sure most of
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us can guess what she does because we’ve probably all had this instinct. The
mother runs to the store, starts cooking and feeds this child turkey for breakfast,
lunch and dinner, every single day.
Whydoesthemothergooutandspecicallybuyturkeyforthechild?Perhaps
it’s the pumpkin pie for thankgiving dinner that is responsible for the effect on
the child’s behavior. Since we cannot tell what is responsible for the change
in the child, we need to do an experiment to test the various possibilities. Put
simply, we need to separate the possible inuenceofthepumpkinpiefromthe
tryptophan in the turkey. We can easily do this with an experiment.
Herein lies the problem with anecdotal evidence. As parents, we search for that
cure and jump on every hope or idea, regardless of the scant evidence that the
treatment will actually make a difference. In the process, we absorb unnecessary
cost and inconvenience in our lives and we waste a child’s valuable window of
opportunity for effective autism treatment. In the worst-case scenario, we can
actually endanger our children, subjecting them to harmful procedures. This
is how seductive anecdotal evidence can be. It is important to be skeptical
and decide whether you want to spend time, money and endure disruption on a
treatment for which support is purely anecdotal. Unfortunately, in the world
of autism treatments, there is an epidemic of anecdotes fueling unsubstantiated
treatments. In short, quackery is alive and well in the world of autism treatment.
The reasons why anecdotal evidence perpetuates itself will become clearer when
we discuss how to properly evaluate experiments; for now, remember, anecdotes
and their cousins, testimonials, are trouble waiting to happen.
We need to care about theory
I was prepared to ignore the role of theory in autism treatment, because I thought
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we could get away without it, and I didn’t want anyone falling asleep reading this
book; however, after speaking to some very intelligent parents who were being
swayed by beautiful theories with no data to support those theories, I realized
thatIhavetoexplicitlydenewhatatheory is and address the role of theory in
the evaluation of autism treatments.
Why do we care about theory? I’m bringing up the topic of “theory”forfour
reasons. First, good research is motivated or driven by theory. Second, beautiful,
logical,precisetheoriescanbequitecompellingandconvincing,andalso100
percent wrong! Third, through theory, we can easily generalize our results to
the real world and know which treatments to provide to our children. Finally,
it is important nottotrustyour“gut”whenjudgingatheory. This is a common
trap which parents are snared into on a regular basis.
What is a theory?
A theory is simply a set of sentences that explain and predict causal relationships.
In autism research, often a theory is simple with maybe one or two sentences
describing the relationship between two statements. An example of a knowledge
claim that is the important part of the theory for our purposes is: Treatment A
can cure autism.
A theory generally takes the form of sentences that are conditional. So, for
example, one theory claims that the reason children have autism is because
their blood contains too much lead and other heavy metals. The theory goes
on at length as to why these heavy metals injure the brain. Then the theory
claims that removing these toxins is going to improve the child’s condition. The
relationship between autism and heavy metals could be put into the following
“If,Then”sentences:
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•IFachildhashighbloodtoxicity levels, THEN he will be
more likely to develop autism than a child without high blood
toxicity.
•IFachildwithautism has high blood toxicity levels, THEN
removing those toxins will ameliorate the autism.
In addition, a theory will have conditions under which it is believed to hold or be
correct. These conditions are known scope conditions, which tell us under which
conditions the theory applies. I will address scope conditions in more depth later
in the book, as it is a very relevant and neglected part of autism research, but for
now, we only need to know that scope conditions are part of a theory.
Good research is motivated or driven by theory
It is crucial to remember that in high qualityresearch, a theory always motivates
the research. In other words, good researchers always have a theory that they are
trying to support or refute. If you come across research with no theory, beware.
These researchers do not understand the way science works and chances are that
they are not going about the research process correctly.
There are all kinds of predictive sentences that you could make out of a theory
which, to the average person, appear very logical, elegant and even beautiful.
This is where parents often get duped! Here is the important point to consider:
the theory may be right or it may be wrong. But the logic of the theory has
absolutely nothing to do with whether a theory is right or wrong. Thomas
Huxley, put it very well when he described the tragedy of science as when
we witness “the slaying of a beautiful theory by an ugly little fact.”1 Good
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researchers understand this point all too well. Huxley’s point is that the theory
may be perfect in every way, except for the unfortunate problem that the facts,
or in this case, one ugly little fact, gets in the way by disproving the theory. In
other words, the theory does not mesh with observations or facts that stubbornly
cannot be explained away.
The concept of theory is very important in autism research because, when done
properly with competent researchers, we can know whether there is evidence to
support the theory, or whether the theoryisatoutwrong!That’showparents
should approach the many kooky autism treatment theories out there. We need
theories to motivate research and we need that so researchers can show us the
data. Put simply, we just cannot accept a treatment based on its theory alone.
It is important to make sure that the data support the idea that the treatment is
effective.
Through theory, if we can create the same important conditions that made the
treatment effective, we can generalize our results to the real world and know what
to do with our children. In my opinion, autism is such a devastating neurological
disorder that it behooves us to attempt to recreate the study conditions which
createdsubstantivechangeinchildren.Ourchildrendeservenolessthanthe
lucky children in the experimental group of the successful study. Here is where
the concept of scope conditions becomes important. The question to ask is
this: What are the conditions that must be present in order for the treatment to
work? If those conditions can be recreated, then the treatment should logically
work again. The challenge for parents of children with autism is to replicate
the important conditions present in the study so the treatment that worked in the
laboratory will also work for them in the real world.
The next point has to do with your intuition about judging whether a theory is
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true or not. Again, it is important nottotrustyour“gut”whenjudgingthetheory
that supports an autism treatment. This point may disturb some and, in general, I
tell parents to trust their gut, particularly when making decisions about vulnerable
children. If you think something is too good to be true, you are most likely
correct. But here I must reverse my usual position. When it comes to theory,
do not trust your gut.
Let us suppose that a researcher develops a seemingly crazy theory. After you
stop laughing about the absurdity of the theory, do not dismiss it because of its
seemingly bizarre nature. Instead, it is prudent to wait and see whether the
data supports the theory. It is important to remain open-minded while awaiting
research data because, in science, the strangest theories have, periodically, been
supported. Two common illustrations come to mind to help make this point:
whether it was the theory that invisible organisms we now know as germs were
making people sick, rather than bad smells, or that surgeons washing their hands
with soap to kill invisible contagions would result in less people dying in surgery,
it becomes clear that we cannot judge a theory based on its initial claims. We
must judge a theory purely based on the evidence.
Another example of a seemingly absurd theory at the time was the use of cobwebs
to heal wounds. Prior to the discovery of penicillin, people used to actually place
cobwebs on their wounds to heal them! If I suggested that today, you’d think I
had lost my mind; however, we now know that penicillin can be derived from
cobwebs. The lesson here is to avoid discounting a theory because it may sound
farfetched or absurd. Instead, the reasonable person waits to see what kind of
data are produced to support or refute the theory. If the data demonstrate that
the treatment is not effective, then the hypothesiscan be said tobefalsied.
Although positive data cannot prove that a treatmentworks(butratherprovides
evidence),negativedata can actually prove that a treatment does not work.
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How do we generalize results in autism research?
Can we generalize research results from a study to all children with autism,
without taking theory into account? Here is where autism researchers engage in
much debate. Typically, when medical researchers conduct clinical trials on a
treatment(usuallyadrug),theygotoastatistician and ask how large a sample size
they will need to ensure that the results of the study will apply to the population
at large. In other words, how many people need to be in the study before we
cancondentlystartusingthetreatment widely for all people who need it. You
will notice that often the number of people which medical researchers use is up
in the thousands. The statisticians will suggest a number dependent upon the
randomness of the sample. In short, if the statistician is convinced that a few
people represent the population of those who are ill as a whole, then the number
will be low. If the statistician thinks that many people in the study are needed
to represent the population, then the number will be high.
Here is where we run into trouble, where autism research is concerned. How can
researchers make sure that the children with autism in the study are representative
of all children with autism in the population if we can’t randomly choose the
children? Any statistician who tells the autism researchers that they need hundreds
of children in the study in order to provide accurate results, will effectively
destroy the study. In my opinion, the creation of very large sample sizes for
autism researchwill occurveryrarelyifatall (asidefromdrugtrials that are
heavilyunderwrittenbypharmaceutical companies). Therefore,thekeyisto
ask how representative the group of children with autism in the study is to the
population at large. If you think that these children are representative of children
with autism, based on the tests that have been done on the children in the study,
youcanfeelmorecondentwiththeresults than if you think that these children
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are not representative of the general population of children with autism. This is
an area where much of the controversy in autism treatment research occurs.
However, even if you believe that a particular autism treatment study does not
have a representative sample of children with autism, there is another way to
generalize the results of the study. This way is through the theory behind the
study. Theory is of crucial importance if we want to easily generalize the results
of autism studies,usingasmallnumbersofchildren(whichisthenorminmost
autismresearch).Iwilladdressthedetailsofgeneralizingstudy results later,
but remember for now that we cannot ignore theory, because using theory is
a very powerful way to make the results of a study apply to more than simply
one child.
Using science to move closer to the truth
What is the next step? We have discussed the concept that a researcher has an
idea and then creates an elegant theory. He or she now has to test the theory.
The challenge for a researcheristondawaytotakeapieceofthetheory and
structure it so that it is operationally testable. The process of testing theory is
where science gets interesting and fraud becomes easier to differentiate and
identify.
Testing theory
If you remember only one thing from this entire book, remember this one simple
illustration.Forourpurposes,thissimplequestionis,inanutshell,whatscience
is all about:
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Does A cause B?
Therearemanydifferentwaystoposethesamequestion.Examples include:
Does one thing cause something else? Does A cause B to happen? Does A cause
achangeinB?Thisquestionabove(inallitsvariousforms)isimportantbecause
itwouldbebenecialtoknowtheanswerbeforeyouprovidetreatment to your
child.Thisquestioncanberepresentedinthefollowingequation:
A —> B
For our purposes in the autism research world, A in the above schematic is the
Treatment and B is Autism. Another way of saying this is that A(thetreatment)
causes B(autism)toimprove,tobeameliorated,ordecrease.B(autism)is
what is called in science, the dependent variable(theD.V.)becausehowsevere
or mild the variable is will depend upon A(thetreatment).A(thetreatment)
is called the independent variable(theI.V.)becauseitisindependent ofwhat
happens to the autism. To review: we want to know whether A(treatment)
has an effect on B(autism).WewanttondthatA(thetreatment)--->B(the
autism)todecrease,improveorinthebestcasescenario, be cured. So now, our
equationlookslikethis:
IV (treatment) —> DV (autism)
In science, both the independent variable(A) and the dependent variable(B)
can be anything one cares to test. To make this more concrete, we can use
examples of how this concept works and purposely not use examples from the
world of autism. Instead we can use the following examples(whichareusedin
any introductory class on the scienticmethod):Doessmokingcausecancer?
Do miniskirts cause bull markets? Does larger class-size lead to lower student
achievement?
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In each of these well-known examples, the rst variable is the independent
variable and the second variable is the dependent variable. The hypothesis in
therstexample is that whether or not someone gets cancer is dependent upon
whether they smoke. The hypothesis in the second example is that miniskirts
cause the stock market to improve. The hypothesis in the third example is that
large class sizes cause students to underachieve. Put simply, the independent
variable can be anything that one believes is causing a change in the dependent
variable, which is whatever one is measuring or studying.
By the way, occasionally autism is actually the independent variable. An example
of this is when researchers study whether autism causes an increase in the divorce
rate among parents of children with autism.So,theequationinsuchaninstance
would look like this:
Child’s Autism —> Increase in Divorce Rate.
Although I’m sure this is a legitimate topic to study (when autism is the
independent variable),thiskindofresearch does not help us protect our children
from autismtreatmentquackery.*
*As an aside, although the scientist side of me thinks that the relationship between the child’s autism and the
increased divorce rate is a legitimate topic, the parental side of me is tired of being studient and analyzed.
There is nothing wrong with us – the problem is that our child has a neurological condition that needs to
betreatedandhopefully,withgoodresearch,wewilleventuallyndacure.Inmyopinion,the limited
researchdollarsforautismtreatmentshouldbespenttryingtondthecauseandcureratherthantofund
research analyzing parents’ coping mechanisms. That view, however, is a very anti-science view and
comes from years of frustration over the poor state of the science in autism treatment. Scientists should
not make any value judgments regarding the theory being tested; therefore, I will attempt to control my
parental opinions.
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Experiments are not Optional
The bottom line in science is that experiments are truly not optional. In order to
ndoutwhetherAreallydoescauseB,orwhetheraparticulartreatment causes
a change in the autism, researchers need to do a well-designed experiment
tolaythis questiontorest.Inotherwords,an experiment is the only way to
collect legitimate evidence to show that the treatment does in fact improve the
condition of autism, or that it does not improve the condition of autism. When
I use the word “experiment,”I’mnotreferringtogatheringdata or information
from something that has already happened and then, retrospectively, making an
argument as to why it has happened. I am referring to the setting up of a testing
situation, taking measurements before the study, taking measurements after the
study and then seeing whether there is a change in the autism. Shortly, we will
explorehowthisisdone,butrstitmustbeunderstoodthatanexperiment must
be conducted before any autism treatment can be taken seriously.
Oncetheexperiment is completed and the data analyzed, the next step is for
the researcher to have the results published in a peer-reviewed journal. If the
researcher has not yet published his or her results, or is not planning on publishing
the results, those resultsmayaswellnotexistforallpracticalpurposes.Often
researchers say that their results are not published in peer-reviewed journals
because the scienticcommunityis“conspiring”againstthem.Iftheresults
aresignicantandthestudy is well done, chances are that the article will be
published, even if these results go against the prevailing beliefs of the scientic
community of the time.
Peer review — necessary but not sufficient
The publication of an article in an academic journal does not necessarily provide
enough evidence to show us that the data collected can actually be trusted. There
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is a range of qualityinpeer-reviewed journals. Peer review is necessary, but on
itsownisinsufcient,totrusttheefcacyofautismtreatment. It is crucial that
the study is designed and executed competently prior to trusting the results.
The peer-review process is the way editors of academic journals decide whether
or not to publish a study in their journal. Generally, the editor sends an article
that has been submitted to a journal, out to three reviewers. These three reviewers
ideally do not know the name of the author but are in the same academiceld
and are competent to evaluate the study. The reviewers critiquethestudy and
recommend to the editor to either accept the article, to have the author revise
and resubmit the article based on the reviewers suggestions for more evaluation,
or to reject the article outright.
The peer-review process is important because it typically weeds out poorly done
studies from well-done studies; however, even studies that are peer-reviewed
and not of high qualitycan end uppublished inlow quality,peer-reviewed
journals or journals that have been established by the very people who desire
their poor qualityresearch to be published. In short, peer review helps ensure
that very poorly done studies do not get published; however, it is certainly not
a fail-safe process.
Uncover the funding source for the study
Before analyzing the qualityofastudy, it is very important to ask the following
threequestions:1)Arethe“moneypeople”adisinterestedsource?2)Isthe
funding source a government department that cares about the outcome?3)Is
the funding sourceacompanywhoseprotdependontheresults of the study?
In short, it is important to uncover who is funding the study and what their
agenda may be. To illustrate, it is a positive sign if the funding source is the
National Science Foundation or another granting agency, with no vested interest
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*As a shorthand, you should know that if a researcher gets a grant from one of the following U.S. or Canadian
agencies, chances are that the research is being done by reputable scientists: National Institute of Health
(NIH); National Institute of Mental Health (NIMH); National Science Foundation (NSF); Centers for
DiseaseControl(CDC);Science ResearchCouncilofCanada(SRCC);SocialScience Research Council
ofCanada(SSRCC).Inaddition,chancesarethatagovernment granting agency from a democratic country
awards grants to its most promising researchers. If you see articles from other countries with government
granting agencies from those countries, chances are that this government sponsored research is being done
by researchers who know what they are doing. Many researchers in other countries also apply for U.S.
grants when they are eligible. Government granting agencies look for researchers with track records of
good researchorwithafliationtoresearchers with good research records. In addition, the research idea
is generally reviewed by two or three other scientists in that eldtodeterminewhetherornottheideaisa
waste of taxpayer money. Note that these government grants cannot be connected to specic government
departments. The minute there is any connection directly to a specic governmental department, the
consumer must be extremely careful about trusting research that is generated from that type of grant.
in the outcome of the study. Agencies with no interest in a study’s outcome,
award the researcher funding because he or she presents an interesting theory
and a competent experimental design.Itisdifculttoreceiveanarms-length
government grant if the study designisawedortheresearcher is unscrupulous
or incompetent. The main goal of these agencies is to fund researchers to move
science forward in terms of ndingthe cause, treatment or cure for autism;*
however, if the funding agency has an agenda, then you must be more critical in
terms of the quality(andhonesty)ofthedata. If the granting agency is either
a government department that cares about the outcome or a private company
trying to sell the treatment they are researching, it is crucial to be careful about
trusting the data published about the treatment protocol. Biased data only sets
scienceback;yetitisoftendifculttodiscoverwhetherornotthedata is biased.
Occasionally,biased data does get published in peer-reviewed journals; however,
this is not the norm.
ThemostimportantlessonIhavelearnedfrommytimeghtingtheautism wars
is that there are some very intelligent, talented researchers who produce biased
research which they often have published in peer-reviewed journals. These
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*The most recent example that comes to mind in the world of autism research is the case where a review
of the science conducted by health policy analysts to defend government in court was discredited by the
sitting justice as being obviously biased and this nding was written into thejudgment.2 These health
technologists then proceeded to present their ndingsataninternationalhealthpolicyconferenceandtheir
review was given a half-page mention in the International Journal of Health Technology Assessment.3
Since their review of the science was discredited in July 2000, their article has been relied upon by several
researcherswhoseworkshavesubsequentlybeenpublishedinotherpeer-reviewed journals.
competent researchers can legitimately be known as academic mercenaries, good
at the peer-reviewgamebutquitecorruptwherethesearchfortruthisconcerned.
Therefore,peerreviewinitselfisnotasufcientsafeguard. It is prudent to be
suspicious if the granting agency is a state or provincial health, education or social
services department that actually has to pay for autism treatment; remember, it
is in that government’sintereststondinexpensivetreatment options that are
effective and expensive, and, in their view, treatment options that are somehow
experimental or ineffective. Trusting research paid for by these governmental
agencies is dangerous.*
Unfortunately, academic corruption occurs all over the world, not only in Canada
andtheUnitedStates.Onegroupwhichwemustbeparticularlywaryofisthe
academics who evaluate emergent health technologies. They often hide behind
the crests of their respective universities, posing as supposedly disinterested
scholars, when actually they are paid handsomely by government to help ration
expensive health treatments and produce junk science to defeat parents’ autism
treatment lawsuits against government. For the complete story on how one group
of corrupt health technologists discredited a science-based treatment for autism,
I encourage you all to read Science for Sale in the Autism Wars: Medically
necessary autism treatment, the court battle for health insurance and why health
technology academics are enemy number one.4 This book recounts the story
of how a group of health technologists succeeded in blocking autism treatment
to the entire population of children with autism in Canada. Remember, before
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trusting research on autism,itiswisetoconrmthatthegrantingagency does
not care about, nor have any vested interest in, the ultimate outcome of the
research.
Finding the peer-reviewed journal articles
Themostefcientwaytoresearch a treatment is through a home computer or in
a university library. The major databasescanbeaccessedfromhome(attimes
forafee,butoftenforfree).Thefollowingfourdatabasesareworthwhile:1)
MEDLINE – The database “Medline”containsdescriptions(alsocalledabstracts)
of almost every medical journal article published in the last forty years, from
1966.Throughawebsitecalled“PubMed”youcansearchtheMEDLINE5 for
free;2)PSYCHINFO6 – This database contains descriptions of most psychology
journal articles published in the last two hundred years, from the 1800s. For
a fee, the articlesinPsycINFOcanbedownloadedthroughitssisterdatabase,
PsycARTICLES; 3) ERIC7 – This database has abstracts of most education
journal articlespublishedinthelastfortyyears,from1966.Often,thejournal
articlescanbedownloadedfree;4)COCHRANE8 – The Cochrane databases
are comprised of three different databases that include all systematic reviews
and clinical trials on treatments. They include peer-reviewed and unpublished
“fugitive”literature(suchasunpublishedgovernmentreports)sotheymustbe
viewed more critically than the Medline or info databases. However, they are
usefulbecauseitisimportanttoknowwhatgovernmentofcialsarereadingto
inuencetheiropinionsaboutfundingornotfundingresearch.Iftherehavebeen
zero reviewsonaspecictopic,thissuggeststhatthetreatment is so experimental
that no one in mainstream academe has chosen it for review.
These databases are the most fruitful places to look up topics relating to autism.
Additional databases may be suggested by your local university librarian,
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depending upon the type of treatment you are researching.Onceyouhavelogged
on to the database, simply type in the treatment you are trying to research. For
example, if you were researching Vitamin B6 as a treatment for autism, you
could get started by searching “autism Vitamin B6” in any of the databases
suggested above.
Itisimportanttolimityoursearchto:(1)theexacttreatment you are researching,
and (2) articles that actually test the method and present data. In addition,
occasionally databases allow your search to be limited to peer-reviewed articles
only.Onceyouidentifyamanageablenumberofarticles, then a one paragraph
abstract of each article can be printed. After reading the abstract, you then must
decide if it is worth ndingthearticle to analyze how the research was conducted.
In our Vitamin B6 example, you would have found approximately thirty-six
articlesfrom the“PubMed” database alone(note thatless than halfof these
articles report any data).Althoughthissoundslikealargenumberofarticles to
ndandread,itcertainlyisworthdoingtheresearch before you commit your
child to an autism treatment.
Is the journal peer-reviewed?
It is relatively easy to discern whether or not a journal is peer-reviewed. As
mentioned above, some databases actually specify whether or not the article is
peer-reviewed and allow the search to include only the peer-reviewed journals.
In addition, every journalhasasection(generallyontheinsidefrontorbackof
the journal)describinghowtosubmitanarticle for publication.Oftenthejournal
will tell you that the papers that have been submitted are going to be subjected
to a “blindreview”(wherethereviewersdonotknowwhoauthoredthestudy).
Sometimes the journal will actually describe itself as a peer-reviewed journal.
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However, more typically, the indicators of a genuinely peer-reviewed journal
are a huge editorial board, and the journalrequiringvecopiesofthearticle
with only the title of the work appearing on the copies that are to be sent to the
reviewers(omittingtheauthor’sname).Thisisdonesotheeditorcansendthe
article to a reviewer without the reviewer knowing who wrote the article, i.e.,
blind review. This procedure prevents a scientist evaluating a colleague’s research
favorably because they may be friends or related professionally in some way.
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Analyzing a study
At this point, I am assuming that you have access to a copy of the study found
from an academic journal, available in a university library or for download from
theworldwideweb.Hereisalistofallthequestionsyouneedtoasktodiscern
whether the study would meet minimum criteria to be considered as a well-
designed and executed study. In this section, I go through each of the following
questions,indepth,tohelpyoucriticallyanalyzeanyautismtreatment study
you choose to evaluate.
•Howmanygroupsarethereinthestudy?
•Howmanychildrenareineachexperimentalgroup?
•Howarethesechildrenassignedtothegroups?
•Whatisbeingmeasured and how?
•Whocollectsthedata?
•Whoadministersthetreatment?
•Couldtheresults have happened by chance?
• Is the study possibly compromised by bias and how can bias be
avoided?
How many groups are there in the study?
Therstquestiontobeaskedisthis:“Howmanyexperimentalgroupsareinthe
study?”Theanswertothisquestionexposesthedesign of the study as certain
study designs use only one experimental group whereas other studies use two
or more. As parents, it is important to understand experimental design, because
the way an experiment is designed is going to provide information on how and
whether the results of that design canbegeneralized toallchildren aficted
with autism. In addition, the experiment’s design provides information about
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possible bias, and how that bias can creep into the design often without the
researchers even knowing.
There are ve common experimental design types: between-subjects design;
within-subjects design; between-within subjects design; factorial design; single-
subject case design. I will walk you through each design type in detail, to allow
you to establish which of the following designs is used for the autism treatment
study in which you are interested. It is important to know the differences among
all the research designs, to see whether or not the conclusions presented can
legitimately be made based on the design of the study.Often,researchers in the
eldofautism make statements about treatment that the study design cannot
support. As a parent, in order to make informed decisions regarding autism
treatment for your child, you need to be able to understand the study design and
uncoverthepotentialawsonyourown.Unfortunately,wecannottrustmany
ofthe “experts”inthiseld.Inthenextsectionofthisbook,Iintroduce the
common study designs you will see in autism treatment research.
Is it a Between-Subjects Design?
In a between-subjects study design, there are at least two groups, one experimental
group(thegroupthatgetsthetreatment),andatleastoneothergroupactingasa
control group, which does not receive the treatment that has been hypothesized
to work. The data are generally taken on each subject and averaged in each
group. Then the averages of one group are compared to the averages of the
other group.
The best way to explain this process is through illustration. In all my examples,
I am going to use IQ tests, because most of us are familiar with this measurement
tool. It is important to keep in mind that in autism research, there is a variety of
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measures used, in addition to IQ scores. The numbers you see in the following
specicexamples are IQ scores, with the approximate scores of thirty and below
indicating severe intellectual impairment, thirty to seventy moderate intellectual
impairment, seventy to eighty borderline impairment and eighty to one hundred
representing the normal range of intelligence.
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Here is a typical between-subjects design.Ofcially,thisiscalledan“after-
only design” as the researcher only measures the group after the treatment.
Technically, researchers can design this type of study if they are extremely
condentthatthechildreninbothgroupsarefunctionallyidentical.However,
it is preferable in autism research to take measurements of both groups prior
Between-Subject Design: Table 1
Treatment Group Control Group
SUBJECT IQSCORE SUBJECT IQSCORE
1. Johnny 71 1. Cori 43
2. Jim 63 2. Jack 36
3. Don 105 3. Greg 51
19. Dave 94 19. Jane 67
20. Sue 62 20. Ed 31
Total: 395 Av.=79 Total: 228 Av.=45.6
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to the treatment. This designhastwentychildrenineachgroup,(twentyinthe
experimental group and twenty in the controlgroup).Thenumbersrepresent
the results of the children at the end of the autism treatment experiment, after the
treatment has been given to the children in the experimental group only.
Suppose the children in the experimental group have been given a type of therapy
for one month and the children in the control group have been in a special
education class for that same month. Further, let’s suppose that the measure
being used is IQ points. In a between-subjects design, one need only compare
the IQ scores of one group with the IQ scores of the other group in the treatment
experiment. In this example, does it look like the treatment worked? Based on
the average of each group, the treatment appears to have worked. But caution is
advised! Based on these raw scores, this conclusion cannot be made. A skilled
researcher will compare the scores using statistics, to make sure that there truly
is a difference between the two groups. There are several comparison tests that
researchers can use. It is important to know now that a between-subjects design
compares two groups of subjects after a treatment has been administered.
Manypeople questiontheimportance ofacontrol orcomparisongroup, but
a control group is very important to ensure that a change due to the treatment
actually occurred. The best way to emphasize this point is by example. Let’s
suppose that you may have started autism treatment with a group of children
inSeptemberandfoundwithintherstweekthatthebehavior of most of these
children started to go downhill rapidly. You might logically think that the cause
of the slide is the treatment and end the study prematurely. The problem with
this thought process is that you do not know whether the treatment created the
behaviorproblemsorwhethertherstweekbackinschool,withnewteachers
and new routines, may have caused the downhill slide.
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This is an obvious error which, hopefully, no competent researcher would make.
A control group acts as insurance, guarding against other inuencesthatmay
render the study meaningless. There are numerous other less obvious inuences
thatoccur(farlessobviousthantheexampleabove),butwemaynotalwaysbe
sufcientlysavvytorecognizethem.These“things”or“inuences”areknown
as variables. In the above example, the variableof“schoolopening”wasan
unintended variable and neither controlled for nor eliminated. If there are two
groups, and both groups return to school at the same time, then the behavior of
both groups should deteriorate at approximately the same rate. The fact that both
groups deteriorate or improve concurrently tells us that it is not the treatment that
has caused the behavior change, but something else that is affecting both groups
equallyand,therefore,willnotaffect the study results(becausetheresults all
havetodowithcomparingonegrouptotheother).Inshort,agoodstudydesign
must have at least two groups where one group receives the treatment, the other
does not. Each group’s results are then measured, averaged and compared in
the post-experiment analysis.
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Is it a Within-Subjects Design?
A within-subjects design has no control group. The subject is measured before
the treatment and then after the treatment, or at different points in the experiment
and then after the experiment. The pre-treatment scores are compared to the
post-treatment scores.
Within-Subject Design: Table 2
Child Pretest Post-test Difference
1. Johnny 43 73 +30
2. Jim 36 61 +25
3. Don 51 105 +54
19. Dave 67 94 +27
20. Sue 31 62 +31
Average: 45.6 79 +33.4
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In this within-subjects design, note that there is no formal, separate control group.
The comparison is between the child’s score prior to the treatment and the same
child’s score after the treatment. In this kind of research design, the child acts as
his or her own control. This example is the most simple within-subjects design
because the children are only tested once before, and once after the treatment
is administered. The main analyses that need to be done in this case are to see
whether or not each child improved. The following two analyses could easily
bedoneinthisinstance:(1)Thepre-treatment scores of all the children could
be averaged and compared to the posttreatment scoresaveraged;and(2)each
child’s pre-treatment score could be compared to that child’s post-treatment
score so that the improvement could be observed for each child. From what we
can see in Table 2, you would think that the treatment looks very good. Keep
in mind, however, that we still need to use statistics to make sure this is indeed
the case.
The main problem with this type of design is the other variables that may
inuencetheoutcome of the study. To illustrate this point, let’s consider this
example: children with autism are often affected by the seasons. Some of our
childrendomuchbetterinthespringthaninthefall(wedonotknowwhy,but
thishasbeenobserved).Ifthestudy occurs over a one-year period, we may see
behavioral peeks and valleys that correspond with the seasons, rather than with
the treatment. Therefore, a researcher may incorrectly conclude that strawberries
help autism because during strawberry season, the child improves! As ridiculous
as this kind of reasoning may seem, researchers are regularly making logical
errors such as this; they confuse correlation with causation. The jargon for this
type of error is called a “causal fallacy.” The world of autism “treatments”
are chock full of these causal fallacies, so please be forewarned that without a
control group, researchers must be much more sensitive to external inuences
than when there is a control group used in an autism treatment experiment. The
advantage to a within-subjects design is that the control group is identical to the
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experimentalgroupbecausethechildactsashisorhercontrol(aswecompare
the child’s own scores prior to and after the treatmentisadministered).However,
the disadvantage is that there is no control group separate and apart from the
children who receive the treatment.
To summarize, a within-subjects design has only one group. The children are
measured against themselves before and after the treatment. However, there is
no separate control group of children who do not receive the treatment.
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Is it a Between-Within Subjects Design?
A between-within subjects design(inmyview,theidealresearchdesign),has
two groups, an experimental and control group. In this design, the two groups
are compared to each other, and each individual child’s pre-treatment scores are
compared to his or her post-treatment scores.
In my opinion, this is the best type of research design because it gives researchers
more information on what they are studying. To illustrate, if a treatment works
on only half of the experimental group, and the scores of the other half of the
experimental group do not change, then by analyzing each subject’s score before
andafter the treatment,wecan nd outwhichsubjects improvedandwhich
subjectsdidnot. Thenwecanaskthe question: “Whatmakesthosechildren
whoimproveddifferentfromthosechildrenwhodidnot?”Thenextexperiment
would then use only children with those characteristics indicative of the group
that improved in the original experiment. These children would be assigned to
either the experimental or control group. This second experiment would then
yield better results(ifthetreatment is indeed effective).Amuchstrongerresult
would move the eldclosertodiscoveringnewtreatments for a subset of children
with autism. Inaddition, we wouldknowwhich children benetmost from
the treatment and then studythechildrenwhodonotbenet,andaskourselves
why. We would be able to develop another area of research using the subset of
children who did respond to the treatment in the experiment.
Below is an example of a between-within-subjects design. There are two groups
ofchildren(anexperimental group with twenty children and a control group with
twentychildren).Eachchild’sIQ is measured before the treatment begins and
after the treatment has been administered.
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Note that the children in the control group are tested at exactly the same time
as those in the treatmentgroup(beforeandafterthestudy).Thechildren in the
control group do not receive treatment (although, depending upon the study
design, they may receive what is typically available for children with autism in
thepublichealthoreducationalsystem).Weanalyzethedata in the following
way:1)thetotalscores of each group before the studyarecompared(tomake
suretherewasnodifferencebetweengroups)thenafterthestudy(toseeifthe
experimental group improved as compared to the controlgroup)and 2) each
child’s scores before the study are compared to his own scores after the study.
Notethe“DifferenceBetweenGroups”column.Inthisdesign, the researchers
alsomatchedaspecicchildintheexperimental group with a child in the control
group and then compared these matched children’s score as well. Matching
two children before assigning one of them to the experimental group and the
other to the control group helps further ensure that the two groups are similar
Between -Within Subjects Design: Table 3
Experimental Group D Control Group D
Difference
btw. groups
Pretest Post-test Pretest Post-test
1. 43 73 +30 1. 41 44 +3 +27
2. 36 61 +25 2. 39 38 -1 +26
3. 51 105 +54 3. 53 57 +4 +50
19. 67 94 +27 19. 64 66 +2 +25
20. 31 62 +31 20. 34 37 +3 +28
T=45.6 T=79 33.4 T=46.2 T=48.4 2.2 T.D.=31.2
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prior to the treatment being administered. A research claim that the treatment
isresponsibleforthedifferencecanthenbeconcludedwithmorecondence,
as the groups were similar at the beginning of the study. Matching children is
done occasionally in autism studies.
Why would we want to do a within-subjects analysis as well as a between-
subjects analysisofanautismtreatmentstudy?AsImentionedabovebriey,
this design allows us to see if some children in the experimentalgroupbenet
more than others. If there is an effect(or,putsimply,thetreatmentworks),then
it will show up in the analysis, and will not be drowned out by the data of the
children who did not respond to the treatment. Take the example of secretin. If
one suspects that secretin has an effect on only 5% of the children with autism
(thechildrenwithcompromised gastro-intestinal systems), agoodresearcher
would design a study with an in-depth, sensitive analysis of each subject and his
or her scores before and after the treatment.Theresearcherwouldneverndthe
effect of secretin if not for the within-subjects design because the effect would
be diluted among the children in the experimental group who did not improve.
However,aqualityexperimentwouldalsoneedthecontrol group’s inuenceto
make sure that the effect wasn’t caused by something else. We will later discuss
other variables that could possibly confuse researchers to think that there is an
effect, when in fact there is not. The important point here is that by measuring
children before and after treatment,wecandiscern:(1)whetherthetreatment is
effectiveatall,and(2)ifitiseffective, for which children.
To summarize, this design has at least two groups of children. Each group’s
results are measured and compared, and each child’s pre-treatment results are
measured and compared to that child’s post-treatment results.
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Is it a Factorial Design?
A factorial design is rare in autism research; however, it is important to know
about this type of study design if you ever need to evaluate a study which uses
this type of design. A factorial design is simply an experiment where two or
more treatments are being tested at once, and the groups act as controls for each
other. For example, if researchers think they have two treatments that work
for autism, but they want to see if each works alone and/or in combination with
each other, a factorial design would be the design of choice.
Factorial designs are common in drug trials when researchers test two or more
drugs at once. The researcher may want to know whether Drug A works better
alone, or in combination with Drug B, and also, whether Drug B works better
alone or in combination with Drug A. The more drugs that the researchers need
to test together, the bigger the study will be. Factorial designs can use more
than two drugs at a time. However, more conditionsarerequiredwhenalarger
number of drugs or treatmentsaretested.Asimpletwobytwo(2x2)design
(usingtwodrugs)willhavefourconditions.
Condition 1:
Drug A Given
Drug B Given
Condition 3:
Drug B Given Only
Condition 2:
Drug A Given Only
Condition 4:
No Drug Given
Factorial Design: Table 4
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Athreebytwo(3x2)design(usingthreedrugs)willhavesixconditions(seven
conditions if a no drug condition were included or eight conditions if there were
a condition in which three drugswereadministeredatonce).
This table illustrates a factorial design with two different drugstested(thesimplest
factorial design).Herewecanthinkaboutourthanksgivingdinnerexample earlier
in this section where we could test the turkey and the pumpkin pie in the same
experiment. Imagine the turkey is A and the pumpkin pie is B. In a more realistic
scenario, in the case of AIDS, for example, where a drug cocktail needs to be
tested with more than three drugs, the experiment would have a greater number
than four conditions. The beauty of a factorial design(evenasimpleone)is
that researcherscandiscernwhether:1)onedrugiseffective;2)bothdrugs are
effective;3)ifneitheriseffective alone but are very effective in combination,
or4)thatneithertreatment or drug is effective. In the case where two drugs or
treatments are more effective together than each one alone, this is known as an
interaction effect because the results are due to the interaction between the two
treatments, rather than each treatment alone.
To summarize, in a factorial design, there are at least four groups and two or
more treatments are compared at once. This is a very good design to compare
treatments because the study can tell us whether two or more treatments, given
together, are better than only one treatment given at a time.
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Is it a Single-Subject Case Design?
A single-subject case design(SSCD),alsoreferredtoasasingle-subject research
design(SSRD),issimplyanexperimentthatusesasinglesubject(althoughmany
SSCDsmayuseasmallnumberofsubjectsratherthanonesubject).I’mcertain
almost every parent of a child with autism has seen or heard of this type of research
design. It is very common in autism research among legitimate clinicians but,
unfortunately, among the kooks as well. Due to the overreliance of SSCDs among
pseudo-scientists, it is important to recognize the proper use of SSCDs.
The vast majority of studies done in the eldofappliedbehavior analysis and
in rehabilitation research(usedbyoccupationaltherapists and physiotherapists)
are single-subject case designs. Single-subject designs are ideally suited for a
patient with an injury and the treatment plan for the person is individualized. In
this case, the use of SSCDs is to rehabilitate that one patient, not to generalize
that treatment plan to another patient or a population of patients with the same
diagnosis.
Single-Subject Case Design: Table 5
A: Treatment 70 IQ
B: Withdrawal of Treatment 50 IQ
A: Treatment 70 IQ
B: Withdrawal of Treatment 55 IQ
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Before describing this type of research, it is worth mentioning that researchers
who legitimately use SSCDs often believe that they are being unfairly attacked
by the scienticcommunity;thereisongoingdebate about how this kind of
research should be properly used. That said, there is consensus in science that
single-subject research is useful in clinical settings, but that it is not appropriate to
generalizespecicallyfromonesingle-subject research design to the population
at large, which unfortunately happens in autism research a lot!
There are advantages to single-subject research designs versus other study
designs.Therstadvantageisthattheexperimenter uses the person as his own
control by comparing that person’s data before the treatment and immediately
after the treatment. Using the same person removes all the possible errors that
can occur from random, individual differences among people. When modifying
behavior, this design typically observes behavior on a few different occasions
prior to introduction of the treatment. Many researchers conducting an SSRD-
type study will then use statistical analysis to ensure that there is a true difference
between the “before treatment”and“aftertreatment”data.Otherresearchers do
not use statistics to see the results; they simply look at a graph showing the data
points before and after the treatment(thoseusingstatistics are often criticized
because there is a debate about which statistical testsareappropriatetouse).
These researchers claim that SSRDs are actually better than the other designs
because the internal validity is high - there is no variability between children in
the control and experimental groups because the control and the treatment are
done on the same person.
The hypothetical design above shows a child who enters treatment for six months
and then is given an IQ test. The child is then denied treatment for a year; his
IQissubsequentlymeasured. The child then enters a treatment program for
another six months and his IQ is measured once again. The child is once again
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taken out of the treatment program for another year and his IQissubsequently
measured. From this kind of design, we could clearly see whether the child was
benetingfromtreatment, and regressing when not in treatment. For that one
child, it would appear as though the autism treatment has a very strong effect.
For clinical decisions, the single-subject design is very compelling, as we are not
generalizing to the population at large; rather, we are simply making a clinical
decision about what treatment does or does not work for that specic child.
When single-subject designs are used in that manner, they do a true service to
the child.
This is particularly true in the case of autistic individuals with self-injurious
behaviors. If a clinician uses techniquestoeliminateself-injurious behavior, do
we really care about the fact that there was only one child in the study?Obviously,
we care that this treatment worked for this individual and has now given the child
a life with no physical restraints; the individual can go out into the community
with the family. When these kinds of studies are published, they are incredibly
benecialtootherclinicians, offering new and valuable tools in the kit box for
use when the clinician is presented with a similarly self-injurious client.
Single-subject research designs are also very useful because they motivate
different kinds of research which attempt to generate causal relationships. In
fact, a small SSRD-type study using two children, actually motivated Lovaas
to do a large scale between-within subjects design which became the very well-
known autism treatment experiment published in 1987.
To summarize, a single-subject research or case design uses one person in the
entire study. This design is common in autism research and is useful in clinical
settings, but controversial if used improperly by generalizing to the whole
population of children with autism.
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What’s the problem with Single-Subject Case Designs?
There is no debate regarding the importance of the single-subject case design,
when used properly; however, it is used improperly all the time. Particularly
troubling is that the single-subject case design method of research is used heavily
by“quacks”becauseitischeapandeasytodo.Thesepractitioners only need
tondone childtoexperiment with and a mere anecdote, now dressed-up as
genuine research,canquicklymorphintoapoorsingle-subject case design. In
addition, case studiesoftenmasqueradeassingle-subject case designs(which
isaproblemduetothelackofrigorinacasestudy).
Another problem among some researchers is their claim that single-subject
designs show A causes B within the general population of children with autism.
Under certain conditions, it is ne to say that a child improved due to the
treatment, if proper experimental controls or safeguards have been put into
place. When this happens, the “Therapeutic Criterion”orthetreatment value for
the subject has been met. Unfortunately, from that one child, one cannot make
general statements about how effective the treatment would be in general. In
short, the “Experimental Criterion”hasnotbeenmetfromoneortwooreven
three single-subject research designed experiments. Single-subject designs are a
very valuable way to treat individual clients and probe to see if it is worthwhile
creating a between-subjects experimentwithalargernumberofsubjects(asin
Lovaas’ researchmentionedabove).If,indeed,wewanttogeneralizeresults to
the larger population of children with autism, or in other words, want to meet
the experimental criterion, we need to do between-subjects designs with larger
numbers of children. There is no legitimate way to get around that type of
necessaryscienticheavyliftinginautismtreatmentresearch.
Proponents of the single-subject case design argue that the solution to the
generalizability problem is to do many replications, and in this way show
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that the result can be generalized to the population of children with autism.
They would argue that their studiesareequal to between-subjects designs in
terms of generalization as long as both types of studies replicate their results.
Theoretically, this is a compelling notion; however, in practice it is rare to see
a large number of single subject study designsreplicatedintheeldofautism
treatment research.
Researchers who use the SSRD method are also generally proponents of meta-
analysis. In a meta-analysis, the researcher combines the results of a large number
of single-subject studies to determine if a given treatment is effective. This is
difculttodowellandhassomemethodological problems associated with it, but
it is a much better way to add to the body of knowledge in autism research than
generalizing through one single-subject research design(adeniteno-no).
Othercritics, such as Furedy,11 are adamantly in their opposition to the use of this
type of design. Furedy states, “The ‘single-subject’ design(whichreallydenotes
a design that employs too few subjects to allow statistical inferences concerning
signicancetobemade)isusefulonlyforthegeneration,butnotforthetesting
or evaluation, of hypotheses concerning any psychologicalfunctions.”Simply
put, critics like Furedy are saying that the problem with single-subject research
designs is that there are not enough children in the study to make sure that the
effect is real, and that the proper use of the single-subject research design is to
generate interesting ideas to test properly.
Although we are not going to end the long-running debate regarding the
shortcomings of single-subject designs in autism treatment any time soon, it is
safe to say that there are too many methodological problems associated with
this type of research design to rely on its results, exclusively, to generalize
an autism treatment protocol to the autistic population at large. In my view,
single-subject designs are relied upon far too heavily in autism research, often
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by pseudo-scientists. The main points to take away from this discussion are
that there are legitimate researchers using the SSRD method. However, make
sure they are using the design in the way it was intended and not simply using
asingle-subjectcasedesignforquickandcheapresearchtohoodwinkyouinto
providing a treatment for your child that has not been properly substantiated with
sufcientscienticdata.Inaddition,youcan“takeittothebank”thatitisnot
scienticallyvalidtogeneralizetotheentirepopulation of children with autism
from one single-subject design. Please be careful!
How many children should there be in each
experimental group?
The answer to this question is very important for any consumer checking
out autism treatment. The answer depends upon the goal of the research. If
researchers plan to generalize their results to the population of autistic people
or the population of autistic children, then they have to be relatively certain
that those children with autism in the study are similar to autistic children in
the general population. The more representative the experimental group is to
the population atlarge,the lesschildren are requiredin theexperiment. As
mentioned previously, autism is a spectrum disorder, and children with autism
can be affected to a greater or lesser extent. Therefore, the degree that children
with autism in a study represent the population at large is always a concern for
competent researchers.
What is the ideal number?
As a general rule, the less the children in a study are representative of all children
with autism,thelargerthenumberofchildrenwillberequiredinthatstudy. Put
differently, if researchers are not using pretreatment measurements to clarify the
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type of children with autism in the study, then the larger the group, the more
condent we can be that these children represent the population of children
with autism as a whole. However, we are still notverycondent.Toavoidthis
problem, in well-conducted studies, researchers do extensive testing to measure
the severity of autism of their subjects before they administer the treatment. If
we generalize the results of each study through the theory the researchers are
testing, and we use an experimental and control group as we discussed earlier,
then we avoid this problem providing the experimental and control group are
the same at the outset of the study. In autism research, the number of subjects in
each study is so small and generally without a controlgroup.Thebigquestion
of the ideal number becomes problematic.
What is acceptable?
The short answer is this: it depends. If you want to generalize autism treatment
research results directly from a study to the populationatlarge(likeresearchers
do in drug trials),thenyouneedtohavecondencethatthechildreninthestudy
aretrulyrepresentativeofallthechildrenouttherewhoareafictedwiththe
disorder. However, if one generalizes through a theory, then twenty subjects
per condition would be considered a very respectable number. Obviously,
thirty subjects would make us even happier; however, the more unrealistic the
numberofchildrenrequiredforanautismstudy,thesmallerthelikelihoodthat
the research will actually be conducted. Even twenty children per condition
in an autism study is almostunheard of(unfortunately)andwouldbe a very
respectable goal. The results of each study would then be considered an instance
(knownas“instantiation”)wherethetreatment was deemed effective.Onthe
other hand, a negative ndingwouldhavetobeexplainedbythetheory.Orthe
theorywouldhavetobemodiedtoexplainthending.Orthetheorywould
need to be wholly rejected, in which case the treatment based on the rejected
theory would properly need to be discarded.
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How are children in a study assigned to the
experimental groups?
I am certain many have heard that the most important thing a researcher can do
is to randomly assign subjects to experimental groups. The idea behind random
assignmentistoensurethatthegroups(theexperimental and controlgroup)are
the same at the beginning of the study to guarantee that the treatment indeed has
created the differences we may see post-treatment between groups. Random
assignment avoids any possible confusion that any post-treatment differences
between the groups may have been caused by the group assignment procedure.
The easiest way to ensure group equivalenceistorandomlyassignsubjects.This
can be done through assigning subjects based on a random numbers table in the
back of any statistics book. Today, researchers also use a computer generated
random numbers program. Random assignment can be done very easily, with
thepresumption(ethicalcaveat)thatthetreatmentisnotalreadywellestablished
as being effective. Random assignment is also simple to do with college students
who volunteer for a psychology experiment. If our children were laboratory
mice, we could always randomly assign them to control and experimental
groups. But our children are not animals. They are our precious children; not
only are they children, but they are disabled children. They are amongst the
most vulnerable populations to study and their human rights must be protected
at all costs. Therefore, random assignment in autism treatment studies is not
always ethically possible.
Here is where we wade into the serious issue of ethics in random assignment
for children with autism. To bring this example home to parents, think about
thefollowing:ifIbelievethat my child will benet from atreatment due to
preliminary published results from a study, and that treatment is considered more
effective the earlier it is started, then I will not allow anyone to randomly assign
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my child because I refuse to put my child into the controlgroup(thechildrenwho
donotgetthetreatment).Theresearcher also has an ethical obligation to tell me
that there is evidence the treatment is effective. In addition, that researcher must
also provide children in the controlgroupwithsomethingequallyeffective in
order to conduct the experiment. To provide an example of how important ethics
is in research, a study on spinabidacomestomind.Theexperiment included
pregnant women, who had previously given birth to a child suffering from spina
bida.Thewomenwereseparatedintoatreatment and a control group. The
treatment group received folic acid and the control group did not. It became
very clear that folic acid was preventing spinabida;therefore,theresearchers
were compelled to stop halfway through the experiment and give all the women
folic acid; otherwise, the women in the control group would have given birth to
children with spinabidaatadisproportionatelyhigherrate!
The above example illustrates how difficult random assignment can be,
particularly in terms of study replications. Unfortunately, these ethical rules
are breached often with autism. Reputable researchers are understandably
very concerned about this issue. To avoid the problem of assigning a group
of children with autism to a control group, some researchers make due with
a treatmentgrouponly.Onewaytoavoidpurerandom assignment is to use
something out of the researcher’s control to determine that subjects are assigned
randomly; placing children in the treatment group when there is grant money
for the experiment and putting children in the control group when there is no
money is one example of functional random-assignment without breaching ethical
standards. When pure random-assignment cannot be done ethically, many tests
need to be conducted to ensure that the groups are functionally the same at the
outset of the experiment.
The vast majority of unsubstantiated treatments for autism could easily be tested
through random assignment, as there are no preliminary results to suggest that
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any of these so-called treatments are effective. It would certainly help parents
to better evaluate the effectiveness of many of these experimental treatments.
However, in the area of behavioral treatment, it is unethical to randomly assigned
children to experimental and control groups because the datashowingefcacyof
behavioral treatment and applied behavioral analysis is, at this point, very strong
and clearly out of the experimental(i.e.,research)stage.Inotherwords,based
on our knowledge of the state of science in autism treatment, denying children
with autism behavioral treatment to test a completely unsubstantiated treatment is
ethically unacceptable. At the date of this publication, we still have researchers
randomly assigning children to experimental and control groups where neither
group receives behavioral treatment. Parents do not get full disclosure about
the proven effectiveness of behavioral treatment for autism. Tragically, this is
somehow considered to be ethically reasonable by some government-funded
researchers.*
In sum, researchers tend to compensate for the problem of their inability to
randomly assign children to conditions, by matching groups and using quasi-
randomassignment.However,even this is ethically questionable in the case
of behavioral treatment, as this treatment is already considered best practice.
Unfortunately, governments often refuse to accept the science behind this
method and refuse to fund this form of treatment. Therefore, government-funded
researchers all too often engage in unethical research practices, and thanks to
politics, are able to continue doing so to the exclusion of science. Until best
practicesinautismtreatmentarermlyestablishedamongstpolicy-makersand
government-funded academics, the unethical research practice of assigning
children to control groups in studies testing behavioral treatment will regrettably
continue.
*For a discussion on the conduct of government-owned academics and their argument about
theethicaljusticationforassigningchildrenwithautism to experimental and control groups,
Science for Sale in the Autism Wars9 lays out the case in some detail.
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What is being measured and how?
Thenextquestion that mustbeasked in evaluatinganystudy is this: “How
are the variables being measured?”Therstvariable which we spoke about
earlier, is the Dependent Variable(DV).Inourcase,theDV is almost always
autism, which needs to be operationalized. In other words, for the purposes of
the study, the researcher must actually measure the degree to which the child is
affected by autism, before and after the intervention.
Autism (the Dependent Variable)
How do we turn autism(whichwelivewitheveryday)intosomethingthatcan
be measured. Remember, we need to measure autism in order to know whether
the child with autism has improved as a result of the treatment being studied in
an experiment. We also need to be able to measure autism in case the autistic
child’s condition worsens during any intervention.
We must measure autism in such a way that the amount of autism(ortheseverity
of autism) is the same, whether I measure it, you measure it or a randomly
selected researcher measures it. It cannot be a mysterious kind of measurement
thatonlypeoplewith“special”powerscando.Autism needs to be measured in
a standardized way so that regardless of who measures it, the results are the same
(aslongasthe person canbetrainedtousethemeasurementtoolsproperly).
Good researchers use a variety of tests that have themselves been tested again
and again to ensure that they accurately measure degree of autism.
Unfortunately, autism is more difcult to measure, as compared to many
conditions or diseases, because the diagnosis of autism is behavioral and not
biomedical. Put simply, we can’t use a blood sample to establish the degree of
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a person’s autism. Therefore, testing autism properly creates some challenges.
To meet those challenges, researchers use many well-established IQ tests and
developmental measures, as well as autism-rating scales. In addition, researchers
often measure the children’s behavior using time. For example, some researchers
count minutes children are engaged in self-stimulatory behavior and see whether
the amount of self-stimulatory behavior diminishes after treatment. Any study
that uses a large number of measures (that make sense to you) is onesignof
a well-done study. It is a good idea to be skeptical when someone uses a new
measure or a biological measure for autism in the study. Many parents are often
mislead when someone with a PhD after their name uses a biological measure,
lulledinthebeliefthata“hard”biological measure can somehow measure autism
accurately. Suspicion is particularly warranted when a study uses a biological
measure without any behavioral measures. In addition, if you see a study that
uses a biological measure and a behavioral measure, and no ndingsarereported
for the behavioral measure, but ndingshavebeenobservedforthebiological
measure,thisdiscrepancyshouldbearedag.Howcouldsuchandingoccur.
Why would the ndingbesignicantindecreasingthelevelofautism? Peptides
used in vitamin research are an example of a way to measure autism that has no
science behind it, at least at the time of this publication.
Tests used to measure autism often include the diagnostic criteria from the
DiagnosticStatisticalManual(DSM),anumberofstandardizedtests such as
(butnotlimitedto)theAutism BehavioralChecklist(ABC)aswellasavariety
of IQ tests. IQ tests do not diagnose autism; however, used in conjunction with
other tests, IQ measures provide researchers with some idea of whether the child
is on the autism spectrum. This is done by looking at the child’s testing patterns,
i.e., whether the child has peaks and valleys in ability or whether the child’s
scores are all consistent. Peaks and valleys would typically show a pattern
indicating autism,whereasat,consistentscores would typically signify other
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kindsofdisorders(suchasmentalretardation).Inaddition,researchers may try
to measure autism by simply counting how often certain symptoms occur, e.g.,
within a number of twenty-four hour periods or a number of one-hour periods.
Behavioral measures are common when a study is looking into techniques to
decrease aggression or self-stimulatory behavior, e.g., researchers may count
how often a child has tantrums in a twenty-four hour period.
The bottom line is that when reading a study, make sure that you agree with
a basic premise: the way researchers have measured autism. In technical
terms, evaluate the way the dependent variablehasbeen“operationalized.”If
researchers are measuring autism in a novel way, pay special attention to how
they justify this new measure. Measurement of autism is crucial, because if
study results do not change any of the measures of autism that make sense, then
the positive results based on their novel measurement of degrees of autism are
meaningless. The level of autism has not changed based on the well-established,
reliable, observable measurements of autism. In other words, they can claim that
their new treatment improves autism based on the way they have measured it.
However, when this treatment is given to children who have autism(measured
inthetraditional way), thechildren’sbehavior remains the same. If a novel
improvement in the way we measure degree of autism were developed, I would
expect that there would be some overlap with the older behavioral approaches.
In addition, for any new autism measure to be widely adopted, it is important
that it be tested and then published in a peer-reviewed journal, to demonstrate
its superiority over other measures.
Treatment (the Independent Variable)
The next challenge for any researcher is taking the concept of the treatment and
making it possible to actually administer. This process is very straightforward
when researching vitamins or drugs. The researcher may spend time on producing
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the treatment, but once the drug or vitamin is produced, then administering the
drugor sugarpill(placebo)isasimplethingtodo.Itismuchmoredifcult
when the treatment is non-drug or non-vitamin-related. Do not trust treatment
professionals who claim that only their special people can provide the treatment
and that their techniquecannotbetaughtwithoutbuyingintothephilosophy.The
treatment protocol must be thoroughly documented through treatment manuals
and/or videotapes. That is not to say that people administering the treatment do
not need to be highly trained, but rather, there must be an opportunity for others
to be highly trained and a documented protocol followed. Many so-called autism
treatments that are unsubstantiated do not have treatmentprotocols(documented
treatmentmethods),andtherefore,donothaveanobjectivewaytoensurethat
the treatment protocol is being followed. In short, please make sure that the way
the treatmentisoperationalized:(1)makessense;(2)isobjective,and(3)can
be evaluated whether or not it is being stringently followed.
It is also important that the various outcome measures for autism used in the
study measure the degree of autism consistently. This criterion is called “internal
consistency.”Putsimply,iftherstmeasurement shows that the child’s autism
is severe, the second measure should also come up with similar results. If one
measure indicates that the child has severe autism and the next measure shows
that the child is mildly autistic, there is a problem with one of the measures, and
the internal consistency of autism(thedependent variable)isproblematic.
In addition, the outcome of the measure must be the same, regardless of when the
outcome is measured. In other words, the way we measure autism must always
give us the same results, whether the child is measured in the morning, noon or
night, or in the winter or summer. If a researcher uses a rating scale to measure
autism,weneedtohavecondenceintheconsistency of the child’s score(before
the treatmentisadministered).Obviously,themoreconsistentthemeasure, the
morecondencewecanhaveaboutrelyinguponit.
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As mentioned before, a key characteristic regarding the measure of the degree
of autism is that the outcome must be the same regardless of who does the
measuring. This is called inter-observer reliability. In other words, those
observing the behaviormustrecorditinthesameway(giveitthesamescore).
When inter-observer reliabilityishigh,wecanbemorecondentthatthedegree
of autism is being measured consistently and properly during an autism treatment
experiment.
Even if the measure is reliable, we have to then ask ourselves: Is it valid?
Anotherwaytolookatthisisbyaskingthisquestion:“Doesthemeasure really
capture the essence of what autism is and how it has changed as a result of the
treatment?”Putsimply:Isautism measured accurately throughout the study?
Thisisasignicantissueinautism studies because autismisdifculttomeasure.
I’m typically put at ease when I see a study that has used a large number of
different ways to measure autism. The use of many measures to establish
degree of autism, in the same study, is the way researchers make certain the
measurement of autism is as valid as possible, considering that we do not have
a biological way to measure autism at this time. To grapple with this problem,
autism research uses many autism measurement scales that have been tested and
renedtoimprovethevalidityofthemeasurement.
The validity of the Treatment(theIndependent Variable)isalsoimportant.Here
I am referring to the treatment actually affecting the degree of autism, and not
another variable that has little to do with the treatment, but appears to occur at
the same time. For example, Dolphin Therapy is hypothesized to be effective
for children with autismbecausedolphinsarethoughttocommunicate(insome
mysterious,secretway)withourchildren.Morelikely,however,isthethesis
that perhaps dolphins are simply reinforcing to most children with autism, and
therefore, children are more likely to pay attention and learn a skill when in
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the pool with a dolphin. It may be the reinforcement, rather than the intrinsic
powers of the dolphin, that is important for researchers to discern. In short, the
validity of the treatment must be considered(andshowntobeconsidered)in
every study.
Who collects the data?
Much of the research done in autismtreatmentishighlyawedwithrespectto
data collection. Although as many as 90 percent of autism researchers might
disagree with me, I am going to suggest that parents should never collect data
on their own children. The reason researchers are going to vehemently disagree
with me on this point is that it takes away all their no-cost manpower for the
studies. Despite the manpower issues, I submit that parental reporting is a
disastrous research practice. Scientists know that “no data is better than bad
data,”becauseverypoordecisions may be based on bad data. Therefore, if we
have bad data, we will make bad decisions.YoumayaskwhyIamsormly
against the notion of parents collecting data.It’squitesimple:parents have many
motivations for studies to succeed or fail. Some parents are so desperate and
hopeful for the magic pill or treatment to work that when they collect data, they
may inadvertently inuence the data, without being aware of this. Conversely,
parents can collect biased dataandbequiteawarethattheyaredoingso,often
understanding the personal, economic implications of a positive or negative result
when data collection may be associated with government respite or treatment
services.
As a parent, I would never trust myself to take treatment data on my own child.
I would be completely unable to do so because I am so invested in the outcome
(eventhoughIwouldtrytobeobjective).Iamquitesure,however,thatifI
weresufcientlytrained,Icoulddoanejobtakingdata on your child. This
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reticence of mine, to take data on my own child, is to avoid creating a self-
fulllingprophecy.Aself-fullling prophecy occurs when the experimenter
unintentionally biases the results of the studytoconrmthehypothesis.
Ifyoueverneedanyjusticationregardingwhyparents should never take data
on their own children, the following example is but one instance of a parent’s
self-llingprophesiesbiasing a study. At a large, prestigious hospital in a major
metropolitan area, there was a study done on melatonin(ahormonethatisthought
tohelpregulatesleepamongchildrenafictedwithautism).Ingoodfaith,the
researchers gave melatonin to parents of children with autism, to administer
thirty minutes before bedtime. The parent was to track the sleep patterns of the
child over a two-week period. What’s wrong with this study? What if I told
you that this was a public hospital? Does that give you any more clues? What
if I told you that in the same region, respite monies from the government were
tied to amount of time that the child slept, and that sleep problems were the only
criterionthatwouldrealisticallyqualifymostparents of children with autism
for the respite money?
In this type of research design, we have set up the perfect dilemma for the parent.
Parents cannot report on their children’s improvement in sleep to these researchers
because they fear their respite monies may be rescinded. I can guarantee that
these researchers had no idea that this was occurring among some of the parents,
as the researchers had no intention of passing along the sleep information. In this
illustration, it is easy to conclude that melatonin’sefcacywasmostprobably
under-reported. In the case of melatonin, that is unfortunate, because melatonin
is a supplement which pharmaceutical companies will not spend time and money
toresearchbecausethereisnoprottobemadefromit,(itisinexpensiveand
widelyavailable fromhealthfoodstores).Therefore,thisrareopportunity to
objectivelytesttheefcacyofmelatonin has been biased toward the hormone
having less positive effect on sleep than it may truly have.
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Who administers the treatment?
Illustrations such as the melatonin example above justify the notion that parents
should not administer the treatment nor record the data on the treatment.
Unfortunately, a study becomes much more expensive when the parent cannot
administer the treatment because the researchers must hire research assistants,
rather than use free parent labor. Aside from poor data recording, parents are
also not as reliable administering the treatment because they have hectic lives.
In addition, I do not trust all parents to provide the proper treatment dosage that
is recommended, because if a parent does not see results, he or she may double
the dose. Remember, we are dealing with a population of parents who may be
chronically sleep-deprived and desperate to see positive treatment results for
their children.
It is the researchers from a study(andnotthe parents) whoarebestsuitedto
administer the treatment and record its data. In addition, those recording the data
should not know which children are in the control group and which children are
in the experimental group of an autism treatment study. In other words, blind is
best. This is particularly important for those taking data at the beginning and
upon completion of the study. It is not always possible to hide the experimental
condition from those administering the treatment, particularly if the study lasts
for years, but this should nevertheless be the goal. The less those taking the
data know about the study, the higher the probability that bias will not creep
into the study.
Another good example why those recording the data should not know which
children are in which group and why parents should never collect data, is a study
conducted in Manitoba.12 The design of this study was well done. Children
were randomly assigned to one of two groups, and data was taken on each
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group before and after the treatment. A psychologist evaluated the children and
found that there was no change in the degree of autism of the children in both
groups (which means that the intervention or treatment was not successful).
The psychologist used a very well-known test to measure autism(theAutism
Behavioral Checklist — the ABC).Inaddition,theparents were asked to evaluate
their own child’s progress. The parents reported a very different ndingfromthe
psychologist: they saw improvement in their child. This was true of the parents
whose children were in both the treatment and control groups; however, there was
no difference between the children in the treatment and control groups! Parents
so desperately want to see improvement in their children’s condition that they
perceive improvement when it may not actually exist. In contrast, the psychologist
in this particular study was blind to which children received the treatment and
found no improvement across conditions, which means his conclusions were not
biased by group assignment.
Did research results happen by chance?
Oncewearepresentedwiththeresults of a study which compare the scores of two
groups, then we need to know whether those results are meaningful or whether
theyhappenedbychance.Toanswerthisquestion,researchers use statistical
measures. They ask themselves: “What are the odds that this effect happened
bychance?”Inaddition,theyusesomethingcalleda“p”value.Youmayread
a study that says, for example, “children in the experimental group increased
their IQbyanaverageof20points,(p=.05).”Thep value indicates that on
thebasisofprobability,ninety-vetimesoutofonehundred,thisresultdidnot
happenbychance.Orinotherwords,vetimesoutofonehundred,thisresult
may have happened by pure chance. Therefore, the lower the p value in a study
publication, the better. When a researcher presents a ndingsupportedbyap
valueofp=.00001,thatisfantastic!Thismeansthatthe odds that the outcome
of the experiment happened by chance are virtually nil.
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Why should we care about p values? When one evaluates a treatment for autism,
and the Between-Subjects Designed Study either does not have p values, or the
p values are .07 or higher, one needs to think about whether those ndingsare
sufcientlyrobust.In other words,are thendingsofthestudy correct? In
short, the smaller the pvalue,themorecondentonecanbethattheresults of
the studydo,infact,reectreality.Anotherstatisticaltermthatisreportedoften
with p values is the StandardDeviation(SD).Forourpurposes,itisimportantto
know whether the SDislargewithinthegroup(meaningthattheaveragescore
ofthegroupisquitedifferentfromeachchild’sindividualscore).IftheSD is
large, that means that the average scoredoesnotaccuratelyreecteachchild’s
score, which indicates a less reliable nding.
Is the study biased and how can bias be avoided?
Manydesigns(suchassomeSingle-Subject and Within-Subject Designs)suffer
fromawsthatcancallintoquestiontheentirestudy. Bias may be created by
the experimental design, yet the experimenter may have no control or may not
even know about the bias. It becomes unclear whether the treatment is causing
theresultorwhetherthereissomethingelsecausingtheresult.Oneofthese
types of bias is called history.
Bias Type 1: History
History refers to something that has happened between the pre-test and post-test,
of which the researcher is unaware. For example, perhaps at the same time as a
vitamin experiment was taking place, some of the parents in the study went to
a lecture on behavioral treatment and started a behavioral treatment program.
Enrollment of the children into another program was not controlled by the
researcher, who did not know that the child received another treatment at the
same time as the vitamins were administered.
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Bias Type 2: Maturation
Another inuencethatcanentirelyruinastudy on autism treatment is called
maturation. There are two kinds of maturation that we need to recognize. The
rstissimplytheamountoftimethathaspassedbetweenthepre-test and post-
test. The more time that has passed, the more likely that the child has matured.
To illustrate, if researchers start a study with two-year olds and the study is over
when the child is six years old, that child has matured through the duration of
the study. Cognitive development may be a factor of concern to the researcher.
With autism, development is less of a problem than with typically developing
children, since autism is a pervasive developmental disorder; however, the
researcher still needs to take maturationintoaccount(thechildgettingolder)
and adjust accordingly.
The second kind of maturation refers to fatigue. A child will often tire over the
course of a study, if the study has the child work for long periods of time at once.
Fatigue is a common problem when testing children, as the child may give more
accurateanswers,forexample,inthersthourthaninthesecondhour.Fatigue
must be avoided if the researcher is to obtain accurate results for the study.
Bias Type 3: Treatment Contamination
Treatment contamination occurs when a treatment is given and then withdrawn.
Occasionally,thetreatment has lasting effects even after withdrawal. Treatment
contamination is a common occurrence when testing drugs that stay in a person’s
system for some time. This may be an issue of relevance to autism, as some
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autistic children do not metabolize drugs in the same manner as non-autistic
children. Treatment contamination may or may not be important, depending
upon what is being tested and the time period.
A completely different kind of contamination concernsprerequisiteskilllevels
prior to participation in the experiment. The “learning history”(othertreatments
receivedpriortothenewstudy)ofthechildbeforeevenbeingaskedtoparticipate
in the study, is a possible confounding variable. In other words, the results of
the study may be partially inuencedbytheskillsthatthechild hasacquired
before the study. Although there will be no effect when comparing a child’s
pre-score with his post-score, learning history does confound the claim that the
treatment under study works for all children with autism, versus a more modest
claim that the treatment works mainly for children with autism who already
have a certain skill set. An example of this type of bias is a study done in New
Jersey on naturalistic learning. Researcherscomparedchildren’sskillacquisition
through a technique calledDiscrete TrialTraining(DTT) versus atechnique
called Naturalistic Learning, to evaluate which of the two was more effective and
efcient.Theresearchers casually mentioned that in New Jersey it is practically
impossibletondchildrenwhohavenothadDiscrete Trial Training histories.
ThissignicantlycomplicatesautismtreatmentstudiesinNewJersey.
These researchers were not actually studying which autism treatment type
wasmoreeffectiveandefcient,butrather,among childrenwhoalreadyhad
considerable DTT learning histories, which methodwasmoreefcient.Thisis
averydifferentquestion.ThegoalofusingDTTistodevelopsufcientskills
and provide enough of a foundation to enable children to learn naturally from
their environment. It may be that this research tells us something valuable
about naturalistic teaching; however, the scope condition would need to say
something along these lines, to validate the study’s conclusions: this is based on
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children who have had discrete trial treatment. This would need to be added to
the theory to be certain that the hypotheses of the researchers will be supported
in other autism treatment studies where perhaps the children have not received
any discrete trial training treatment.
Confounding Variables in General
The researchermaynotbeawareoftheseinuenceswhichmayaffecttheoutcome
of the studyinprofoundandsignicantways.Ingeneral,anyvariable that has
not been considered and controlled may confound an experiment and, thereby,
render the results meaningless. The world of autism research suffers from the
problem of confounding variables to a very disturbing degree.
As mentioned previously, the effect of season is an important consideration
when it comes to research on children with autism. Apparently, children with
autism often fare better in one season rather than another. The reason for the
seasonal effect is not clear. If the experiment lasts for one year, the results of
the study could be skewed unless researchers consider this inuenceanddesign
their study accordingly.
Another example of a variable that needs to be considered is sensory sensitivity.
Imagine that in the room where the child receives treatment,thereisaorescent
tube with a buzzing sound emanating from its transformer. It is possible that the
child may be distracted; the researcher may attribute that distraction to autism
rather than to the buzzing light, or perhaps some other sensory interference of
which the researcher is unaware.
There are many variables that have nothing whatsoever to do with the treatment
which may inadvertently affect the outcome of a study. Although no study is
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perfect, without a control group that is having the same experience in every way,
aside from being administered the treatment, it is innitely more difcult to
control unknown variables that can confound an experiment. Every researcher
must be aware of this issue. Such awareness helps ensure that the scientic
method will be used successfully to develop and test effective treatments for
childrenafictedwithautism.
How researchers mistakenly ruin their own
well-designed autism treatment studies
The rst mistake that I see commonly in autism publications is the faulty
interpretation of data. Researchers often mistakenly ruin their own studies by
misinterpreting the data. This is why the process of peer review is so crucially
important. Perhaps some researchers may err in their interpretation of a study’s
data; however, their academic peers will use the opportunity to robustly critique
the study and expose any errors or misinterpretations. In addition, researchers can
also introduce bias by using datacollectedinaccurately(byparents or untrained
others),orbytheobservation measurebeingtoosubjective(yieldingdifferent
results based on who collects the data). Thisissue is addressedbyensuring
that experimenters standardize their data collection procedures. The accurate
measurement of the dependent and independent variables is vitally important.
Although we’ve spoken about bias that may occur due to type of design chosen,
even if the study design is good, there are two other kinds of bias that can
creep into research: demand characteristics and experimenter bias. Demand
characteristics occur when the subject tries to please the experimenter. The
subjectattemptstobehavetoconrmtheexperimenter’s hypothesis. This is not
a huge concern in autism research as the autistic child would likely not care or
understand the hypothesis, but it is a major inuencewhentheparent is involved
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in taking and reporting the data, for example. This is why, if possible, the parent
should not know the hypothesis of the study, or to which condition the autistic
child has been assigned. Unfortunately, this is not always practical or ethical;
however, when possible, the parent should not know the purpose of the study
and the research group to which their child has been assigned.
The other type of bias, which is a major issue in autism research, is the effect of
the experimenter’s expectations of outcome. Researchers, unfortunately, tend to
be very invested in the outcome of their study: this overzealous commitment to
their hypothesisisoftenduetopotentialmonetarybenet.Ontheotherhand,
we see some researchers are over-invested because they care profoundly about
this population of children, irrespective of personal gain. These researchers also
want their hypothesis to be supported; therefore, they must take great care to
avoidinadvertentlyinuencingtheoutcome of the study.
To illustrate this point, I will spotlight a famous study that illustrates the problem
oftheself-fulllingprophecy. The researcher, Rosenthal(1968),setupasituation
where he told teachers in a classroom that a subset of their students were “late
bloomers.”Thechildrenwereactuallyrandomlychosen,withouttheteacher’s
knowledge. At the end of the school year, Rosenthal found that the children who
were expected to excel, did indeed do very well as measured by IQ scores. The
children were actually perceived to be more intellectually gifted and autonomous
by their teachers. More alarming was the circumstance that the children who
didsoinschool(asmeasured by IQ)butwerenot expected to do well by the
teachers, were actually perceived by the teachers to be less affectionate, less
well-adjusted, and less interesting.10Thepoweroftheself-fulllingprophecy
should not be discounted by any competent researcher. The experimental design
must safeguard against this issue.
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How can bias be avoided?
As I have reiterated throughout the book, the goal of every researcher must be to
avoid bias. This can be done in the following manner: studies should be designed
with a control group; the groups should be the same; subject assignment should be
hidden from the researchers taking and evaluating the data; inadvertent parental
inuenceshouldbeavoided;theinuenceofthepersonbeingstudiedshouldbe
eliminated; funding should be received at arms-length, from agencies who have
no interest in the research outcome.
A control group to compare results helps eliminate bias. A control group is
particularly important for the parent or consumer when the treatment claims made
are spectacular. In addition, both groups must have the same characteristics at
the beginning of the study, by random assignment when possible or functional or
“quasi-random”assignmentwhenrandomassignmentisanethicallyquestionable
practice. Further, the assignment to conditions must be concealed from the
experimenter(or at aminimum hidden fromthosein theresearch team who
administer the treatment). Whenpossible,external evaluators must be used.
These evaluators, although part of the experiment, must have no idea which
conditions the subjects have been assigned. Moreover, parents must be kept as
uninformed as is ethically possible, to avoid inadvertent parental inuenceand,
thereby, confound the experiment. In addition, parents should not be involved
in the experimental procedures, including the administration of treatment or data
collection. In the case of autism research, it is important not only to eliminate the
inuenceoftheautisticpersononexperimentaloutcomes,butalsotoeliminate
the inuence oftheparent or the person who will most likely accompany the
child while participating in the study.
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When Is It Time To Apply the Results to Children?
When can we trust the results of a study and apply these results to our children?
In other words, when can we generalize the results? If the children in the study
are representative of the greater population of children with autism, then results
may be generalized directly from the study to the population at large. However,
even if the children are not representative of all children with autism, the results
can still be valuable. They simply need to be generalized in a different way.
Here I am referring to the generalization of results through theory.
Although the generalization of results through a theory is more time-consuming
than directly to the population at large, it is often the only way to do so responsibly.
If research results are to be generalized through a theory, to the population of
children with autism as a whole, then it is very important to see many studies
which report data that supports the theory. Each study acts as an instance of where
the theory is supported. The more supported instances of the theory or hypothesis,
the more secure we are in the knowledge that the autismtreatmentinquestionis
truly effective. It is important to keep in mind that Between-Subjects Designs
conductedoveralongperiodoftimearemuchmoreexpensiveanddifcultthan
Single-Subject Case Designs(SSCDs);therefore,onewouldexpectlessofthe
Between-Subjects Designed studies to be conducted. That said, a few Between-
Subjects Designs conducted with a large number of children and supporting the
theory would be more valuable than a few SSCDs supporting the theory, because
Between-Subjects Designs have a control group to eliminate variables that may
confound the results of a study, whereas SSCDsdonothavethisbuilt-inquality
control mechanism. For researchers conducting research using SSCDs, their
results are also instances that can support their hypotheses. However, many
more replications of their ndingsareneededinordertogeneralizecondently
through the theory.
2.8
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At this point in autism research, there are too few studies being conducted
on treatment methods; therefore, multiple replications of SSRDs would be
quitevaluable.Unfortunately,whatoftenhappensisthatless-than-scrupulous
researchers, who are pushing their latest fad treatment, use perhaps only one
single child research study to generalize their treatment directly to the population.
For studies that can be done over a short period of time, we should expect more
SSRD studies to support the treatments being tested.
In summary, the time to take a treatment seriously is when you see mounting
evidenceofitsefcacy,irrespectiveofexperimental design. Since SSRDs are
much easier to do than Between-Subjects Designs, prior to evaluating the use of
a treatment, we should see many more of these study designs which support the
methodinquestion.Currentlyinautism research, the only area where SSRDs
are consistently used responsibly is in the eldofappliedbehavior analysis.
Is the research far enough along?
Thequestionthatremainsisthis:“Whenshouldresearchers apply the research
to children with autism?”Pureresearchers, who are far from utilizing any of
their knowledge to create a treatment, are not problematic for parents. We
simply need these geneticists, neurobiologists and other pure researchers(whose
researchmayone day nd acure)tokeep toiling in theirlaboratories.They
rarely push treatments prematurely out of the lab. It is the researchers working in
clinical settings who are the most problematic for the consumer. Even reputable
researchers may place children into studies much earlier than is warranted due
to parental pressure. These researchers are in an ethical bind, as they see the
desperation of parents, and they may need human subjects for their experiments;
however, their research may not be ready to be tested. Premature treatment occurs
commonly through drugs designed for autistic adults, when they are prescribed
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Section Two: How Do We Know What Works and What Doesn’t?
to children with autism. Psychiatrists are well aware of the studies on adults
and tell the parents that there are no comparable studies on children with autism.
Nevertheless, parents are often still given the option to experiment on their children
with drugs that have only been properly tested on adults. These ethical issues are
difcultand,inmyopinion,shouldbeleftuptotheparent and the psychiatrist
to weigh the potential benets against the potential risks for the child. Less
difculttodiscern,however,areresearchers who have no dataontheefcacyof
their treatment. They offer the treatment as purportedly effective for autism even
though there are no peer-reviewed studies published on their treatment. Here,
parents must use their knowledge of the scienticmethod to make an informed
decision. I hope this book will be a valuable part of that process.
Testing on human subjects
Experimentation on disabled children is a very touchy subject for researchers. It
is obviously important that the child not be harmed by the treatment; however, as
children with autism cannot give informed consent, their parents do this on their
behalf. Unfortunately, there are potentially dangerous treatments that parents allow
their children to receive, due only to their faith in the professional pushing the
treatment.SectionOneofthebook discusses these treatments in some detail.
Ethical considerations often interfere with experimental design. A good example
of this type of interference occurred when parents were to give informed consent
to Lovaas for his landmark study. Parents protested against random assignment
because every parent wanted their child to be in the treatment rather than the
controlgroup.Consequently,withtheNational Institutes of Health’s blessing,
Lovaashadtondanotherwaytorandomizetheassignmentofchildrentogroups
(functionalrandomassignmentdiscussedearlier)whichhadaprofoundeffect
on the study design.
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Parental pressure is a major concern in autism treatment. When studying children
with autism, parents pressure researchers on a regular basis. Parents can motivate
research this way; however, they can also pressure researchers to prematurely let
a treatment out of lab. This phenomenonisexempliedinallthestudies done on
secretin, due to one family’s ability to bring out the media in a major way. The
ability of parents to shine a spotlight on treatments is a mixed blessing because it
is, theoretically, possible that an effective treatment may be discovered this way;
however,moreoftenthannot,signicantresources are spent on researching a
treatment that is proven to be a dead end.
Red flags for quackery
What are the redagsforquackeryyoumayseewhenyoutrytoseparatefraud
from true science?Toreview,thereareveindicatorsthatwhentakentogether
can signal scienticquackery(junkscience)totheconsumer(whichinourcase
is generally the parent of a child with autism). These red ags are:personal
testimonials with no scienticbackup;fancyexplanationsfromthearticulate,
slick public speakers offering the service; logical arguments about why the
treatment should work; videotapes showing the treatment working, and famous
people using the method.
The redagmosteasilyobservableisoneormorepersonaltestimonials without
any scientic backup provided by the person selling the treatment. Often
testimonials take the form of autobiographies, wherein the parent describes
stories of how he or she employed the treatment in question and the child
improved dramatically or was cured of autism. Watch out. These testimonials
are highlighted as a selling tool. In addition, the redagshouldstartappingin
thebreezewhen,inresponsetoyourqueriesaboutwhetherthereareanypeer-
reviewed journal articles available on the treatment method, the sales person
2.9
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Section Two: How Do We Know What Works and What Doesn’t?
answers that science is far too close-minded regarding this research because
government or big business have somehow captured science. Conspiracy
theories which attempt to explain the prevention of publication of science are
always suspect.
Another red agtakestheformoffancy explanations,withalargevarietyof
glossy sell sheets and videos. Generally, scientists do not waste grant money on
attempting to sell their research, and then take it prematurely out of the lab into
the population at large. Genuine scientists are the least likely to use marketing
tools of persuasion. In all of the treatmentsthatwereevaluatedintherstsection
of this book, the treatments with absolutely no scienticevidence tended to have
the most well-developed marketing materials.
A third redagisthepresenceofseveralseeminglylogical arguments explaining
why the treatment works, but no data supporting the theory. Real scientists are
veryquicktostatethattheyareworkingonatheory that could be wrong. They
will not try to convince you that their unsubstantiated theory is right because it
seems so logical. It is a good sign when the consumer hears that a researcher is
tentative about the state of the science in autism treatment. When researchers
admit that their assumptions regarding the treatment they are studying may be
incorrect, the tentative nature of these researchers should be respected.
Another redagtakestheformofvideotapes which demonstrate the therapy and
show you the instant effect of the treatment, once again without peer-reviewed
scienticsupport. Videotapes are a valuable way to illustrate the treatment;
however, they should not be used to convince consumers that the therapy is
effective. This practice is particularly disturbing when a major news organization
creates a documentary or news piece on a treatment which has no data supporting
itsefcacy.Thisbeendoneonalargenumberoftheunsubstantiatedtreatments
discussedinSectionOne.
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Afth red ag tonote isthe endorsementof the treatment by celebrities or
academics with credentials. Notoriety as a tool of persuasion to convince you
to try the treatment, or buy a product, is a common techniquethatshouldwake
upyour quack detector.The use by researchers of their credentials, without
presenting any scienticevidence, regrettably is a very common problem in
autism research. Put simply, data must lead the way for your family and for the
whole autism community. Anything else must be ignored; otherwise, a treatment
with no data may be marketed in such a way that even the most savvy parent
could be convinced that the treatment is effective.
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Section Two: How Do We Know What Works and What Doesn’t?
Conclusion
Now that you have an understanding of the many ways that researchers do,
or do not, use the scientic method to study autism, I’ll leave you with the
following thought. Regardless of how compelling, articulate, and intelligent
researchers appear to be, and no matter how tempting, attractive, and elegant
theories regarding treatments appear, the buck stops with data. The best way
to protect your child from quackeryistosaySHOW ME THE DATA! Before
you try, buy, or attempt to research any treatment“showmethedata,”shouldbe
your mantra. This basic, guiding principle will save you and your child much
time, money and grief.
Onceyoureceivethedatathatyouhaverequested,younowhavethetoolsto
analyze the qualityofthestudy upon which the practitioners are basing their
practice and offering treatment to your child. I sincerely hope that one day we
parents of children with autismwilllookbackonthe“badolddays”whenthere
was no cure for autism and parents had to become scientists to protect their
children from quackerypeddledbythemodernsnake-oilsalesmenofourday.
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436
Endnotes
1Huxley, T.H. 1969. Evolution and Ethics. New York: Kraus Reprint.
2Auton et al. vs. the Attorney General et al., July 2000.
3Bassett K., et al. 2001. “Autism and Lovaas Treatment: a systematic review of effectiveness
evidence.”International Journal of Technology Assessment and Health Care, Vol. 17, No. 2,
p. 252.
4Freeman, S. 2003. Science for Sale in the Autism Wars. Langley, B.C.: SKF Books, Inc.
5PubMed, http://pubmed.gov; MEDLINE, http://medline.cos.com.
6PsycINFO,APAOnline,http://www.PsycINFO.com
7ERIC Education Resources Information Center, http://www.eric.ed.gov
8Cochrane Database of Systematic Reviews, http://www.cochrane.org
9Freeman,S.,(seen.4above).
10Rosenthal, R., and L. Jacobsen. 1968. Pygmalion in the Classroom. N.Y.: Holt, Rinehart and
Winston.
11Furedy,J.J.1999.“Commentary:Onthelimitedroleofthe‘single-subject’designinpsy-
chology:Hypothesesgeneratingbutnottesting.”J. Behavior Therapy and Experimental Psy-
chiatry, Vol. 30, pp. 21-22.
12Jocelyn,L.J.,O.G.Casiro,D.Beattie,J. Bow,andJ.Kneisz.1998.“Treatmentof children
with autism: a randomized controlled trial to evaluate a caregiver-based intervention program
incommunityday-carecenters,”J. Dev. Behav. Pediatr., Vol. 19, No. 5, pp. 326-34.
437
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Afterword
An Update to
The Complete Guide To Autism Treatments – 2007 to 2010
Four years ago, a comprehensive literature search on autism treatments was
completedfor thersteditionofthis book.Withtheurryofactivityinthis
eld,thepublicitythatautismhasgarneredrecently,andtheincreasedspend-
ing of research dollars on autism, the time is right to return to the databases and
search for new, innovative research on autism treatment.
Onceagain,Isearchedeverydatabaserelevanttoautismtouncovereveryau-
tism treatment offered to parents for their children. The searches included all
the prior databases and the addition of a couple of new ways to search. For
these searches, I captured all the peer-reviewed articles concerning autism treat-
ment published from 2007 through to 2010. In addition, in areas where I could
notuncoveranynewpublications(forexampleCranio-sacralTherapyandVi-
sionTherapy),Isearchedforauthorswhohadpreviouslywrittenarticlesabout
thetreatmentinthehopeofndinganewarticlethatmaynothavebeencata-
logued by the various databases. After sifting through the innumerable studies
that were published in the last four years, several themes became very clear.
Here, I will report on these themes.
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438
Lack of Evidence
Despite the large number of articles published recently, only a very few have
any research data contained within the thousands of pages of commentary, de-
scription, and review. Remarkably, the vast majority of articles published in
the last four years provide no data, whatsoever! Note that here I am referring
to articles on the treatment of autism, and not on research into the causes of
autism. This is a very important distinction to make because the amount of
research being conducted by neurobiologists looking into autism and the brain,
and geneticists studying the genetics associated with autism is growing and is
nallybeingwell-funded (in fact,itis the condition to research for neurobi-
ologistssincesomanygrantsarenowavailable).Inaddition,moneyisbeing
invested into a number of studies researching autism using animals models. I
eagerly await a breakthrough in treatments for autism from these pure research-
ers. As an unfortunate contrast, most of the current treatments for autism being
offered by various treatment providers still have a poor record when it comes
to the provision of data to back up claims that promise to improve the condition
of autism in children.
Quality of Data
Not only is there a lack of data in most of the autism treatment articles pub-
lishedfrom2007to2010,butthequalityofdataformosttreatmentsthathave
reportedndingshasnotimprovedmuch,ifatall.Forthemostpart,themis-
cellaneous therapies are still characterized by fuzzy thinking, at best, and offer
uncontrolled case study reporting. Some treatment modalities that had no data
toreport,now have reportsprovidingdatathat is ofpoorquality. There are
morecasestudiesthanbefore;however,Icouldnotndevenonescientically
rigorous study from any of the studies that traditionally had no data to report.
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Indeed, the scourge of the case study appears to be alive and well in the wild
worldof“choices”inautismtreatment.
Increasing Evidence Against Treatments in Selected
Areas
Onebrightspotintheeldofautismtreatmentresearch,isanincreasedactivity
amongst researchers who competently test fringe treatments as these treatments
becomepopular(thisoccurredmostfamouslywiththedebunkingofFacilitated
Communicationbyavarietyofstudiesinthe1990’s).Thefollowingresearch
adds evidence to the lack of effectiveness of the various treatments listed below:
Gluten and casein-free diets
Threestudieshavereportedndingsthatprovideevidenceagainstthetreatment.
Two studies1,2foundnodifferenceintheurinaryprolesofchildrenwithautism
as compared to the population of typically developing children, with one study
usingarelatively largesamplesize(65boys withautismand158boysascon-
trols).Ifonecannotdetermineabiomedicalmarkerforautism,thenitisprema-
ture to use opioid peptides as a response to this diet. Furthermore, it is premature
toofferthegluten/casein-freedietasatreatment(unlessanother,newbiomedical
markercanbefound).Thethirdstudytestedchildrenusingthisdietinadouble-
blind,clinicaltrialandreportedalackofefcacyforthistreatment.3
Sensory Integration
Anothertreatmentthathasgainedsometractionistheuseofweightedvests(a
techniqueemployedbysomeofthepractitionersofferingSensoryIntegration
Therapy).Twostudies4,5 found no improvement in children with autism as a
result of the use of weighted vests.
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Dolphin Human Therapy
Although to some, this fringe treatment has not been taken seriously, thousands
of parents have spent considerable time and money on the use of Dolphin Ther-
apy.Due to theextremely expensivenatureofthetherapyand dubious ef-
cacy claims made by practitioners, the therapy motivated an interesting study
wherein researchers created an animatronic dolphin to see if there would be
anydifferenceinefcacyifthedolphinsthatinteractedwiththechildrenwere
mechanicalreplicasoftherealthing.Theyfoundthatchildrenwereequally
reinforced by the use of a robotic dolphin as they were with real dolphins. This
disproves the theory that dolphins have special, as yet undetermined powers of
connecting to children with autism. The robotic dolphin study further supports
the contention that Dolphin Therapy is all about creating effective behavioral
reinforcementsforchildren.Surelypractitionerscanndmoreconvenientre-
inforcements for children with autism which can be provided at home and in
the community rather than travelling thousands of miles to warm water dolphin
habitatsforaweekofexpensive,inefcienttherapy. 6
Tomatis Sound Therapy
Auditory Integration in its various forms has been offered to children with au-
tismoverthelastforty-veyearsandhasbeenwidelypublicizedasamiracle
treatment.This was one of the rst treatments I came across when my child
was diagnosed with autism in the early 1990s. In 2008, yet another test of Au-
ditory Integration was conducted using a randomized, double-blind, placebo-
controlled,crossoverdesign(pleaseseepage389foradiscussiononstandard
researchmethodsandtheirterminology).Thisstudy7, like the ones before it,
found no improvement in language amongst children with autism using Toma-
tis Sound Therapy, adding further to the list of prior studies that disprove this
techniqueasaneffectivetreatmentforautism.
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Section Two: How Do We Know What Works and What Doesn’t?
Oral Human Immunoglobulin
A recent study8 was conducted on the effect of Oral Human Immunoglobu-
lin on the gastro-intestinal system of children with autism who suffer from GI
dysfunction. A double-blind, placebo-controlled trial was done using a sample
of125childrenwithautism.Theresultsshowednosignicantdifferencesin
symptoms related to autism as a result of the treatment.
Thesenewerstudiesjointhesignicantquantityofpublishedresearchpapers
that demonstrate no evidenceof treatmentefcacyderived fromoralhuman
immunoglobulin. It is not surprising that there are additional studies that dem-
onstrate a lack of evidence for these various fringe treatments, once they are
closelyscrutinizedusingthescienticmethod.Theevidencedemonstratingthe
lack of science in autism treatments has actually grown. The onus is now upon
the practitioners of discredited autism treatments to prove otherwise.
New Therapies
ThroughthelatestdatabasesearchinDecember2010,Ifoundvenewthera-
pies that are gaining popularity and have recently joined the dozens of currently
offered treatments. I will discuss each new treatment and the effectiveness
evidence behind all of them.
Hyperbaric Oxygen Therapy
TheuseofHyperbaricTreatment(HBOT)forchildrenwithautismhasrecently
gained in popularity. Although Hyperbaric Treatment has been used appropri-
ately for a number of ailments, the most famous being for ocean divers who
sufferfromdecompressionsickness(the“bends”).Practitionershaverecently
beenapplyingHBOTtochildrenwithautism.ThebeststudydoneonHBOTis
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442
amulticenter,randomized,double-blind,controlledtrial,whichatrstglance
looks compelling.9 I was pleased to see that randomization and controls were
incorporated into the study. The biggest issue with the study mentioned above
is the way the pre-tests and post-tests are used to determine whether the treat-
mentimprovestheconditionofautism.Onlywhenonelooksattheoutcome
measures used in the study does it become disappointedly apparent that they
areeitherverysubjectiveornotappropriatelytested.Specically,theClinical
GlobalImpressionScale (CGI)iscompletedbythephysicianandthe parent,
andthetwochecklistsused(TheAberrantBehaviorChecklist(ABC),andthe
Autism Treatment Evaluation Checklist (ATEC)) were designed and are en-
dorsed by a private institute that has a track record for endorsing unsubstantiated
treatments. Nowhere in the study referenced above is objective, psychometric
testingdonebyapsychologistwhoisnotafliatedwiththestudy,priortoand
after the study. Another study of note was conducted by researchers working
with children in behavioral treatment programs and not involved in the provi-
sionofHyperbaricOxygenTherapy.10Theirstudy(involvingthreechildren)
foundnoimprovementintheirconditionasaresultoftheHBOT.Thissmall
studywasanimportantrststep;however,itisclearthatalarge,independent
study with appropriate pre-test and post-test measures needs to be conducted in
ordertodeterminewhetherthereindeedisanybenetforchildrenwithautism
toundergo this form of therapy. At thispoint, HyperbaricOxygenTherapy
cannot be categorized as a treatment with any evidence that it improves the
condition of autism.
Rapid Prompting Method
The Rapid Prompting Method was developed by the mother of a child with au-
tism,SomaMukhopadhyay.Shefoundthatthetechniquessheusedgreatlyim-
proved the symptoms of her son. This method, which uses rapid prompting to
helpthechildcompleteataskoransweraquestion,isnowofferedbyherclinic
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Section Two: How Do We Know What Works and What Doesn’t?
that goes by the name of Halo. To date, there is only anecdotal evidence for the
effectiveness of the treatment presented in the form of testimonials on the Halo
web-site.11Atthispoint,Icouldnotndanyscienticevidenceregardingthe
effectiveness of this treatment method; therefore, the Rapid Prompting Method
can be categorized as a treatment that is unsubstantiated at this point.
Massage Treatment
In recent years, Massage Treatment is being applied to children with autism.
ThemoststudiedmassagetreatmenttechniqueistheQigongMassage.Inthe
most rigorous study, a therapist provided Qigong Massage Treatment to chil-
drenfortwentytrainingvisitsoveravemonthperiod. During these visits,
parents were also trained to massage their children. Between therapist mas-
sages, parents were to give daily massages to their child based on the training
they received. The parents submitted videos to make sure that their massage
techniquewasdoneproperly.Thisstudyreportspositivendings;however,the
studydesignishighlyawed.First,theattempttotreatchildrenwithautismto
improvesensoryandself-regulationisproblematicbecauseitassumesthata)
weknowenoughaboutautismandsensorydifferences,andb)wecanmeasure
sensory differences accurately. Second, the study’s measurement of autism in
general is problematic. All the data was collected using a variety of checklists
thatrelyonparentalorteacherreporting(theAutismBehaviorChecklist–ABC
-andthePDDBehaviorInventory-PDDBI).Nowhereinthestudyispsycho-
metric testing administered by an independent psychologist, which is crucial to
the credible measurement of relative outcome. Prior to using this treatment for
childrenwithautism, I wouldencouragetheseresearchersto test itsefcacy
with another study that utilizes better outcome measures that are deployed by
professionals with no prior relationship to the study. 12
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444
Neurofeedback
Neurofeedback has been used on a myriad of conditions, and is now being
usedonchildrenwithautism.Duetothedifcultychildrenwithautismface
intakingspecicdirection,whichisnecessaryforNeurofeedbacktobecon-
ducted, only high functioning children were used in the double-blind study that
tests this treatment.13 The study demonstrated that children with autism can be
taught to control certain brain waves. Even if we take at face value the data that
certain brain waves were controlled, we do not know the relationship between
that type of brainwave and behavior. Unfortunately, the results they reported
for the speech/language communication, sociability and behavior were all from
the AutismTreatment Evaluation Checklist (ATEC). This checklist is not a
well-established measure for autism treatment, but rather, endorsed by a private
institute, and completed by parents. In order for the Neurofeedback practi-
tioners to make the argument that Neurofeedback does improve the condition
of autism as measured by speech and language, sociability and behavior, they
would have to rely on independent professionals to administer tests prior to and
after the treatment. At this point, there is no evidence that Neurofeedback is an
effective treatment for autism.
Electro-Acupuncture
The newest addition to the autism treatment offerings is Electro-Acupuncture.
In this treatment, needles are inserted into certain areas of the body and then
electrical stimulation is provided through the needles using an electro-acupunc-
ture machine. In the best study, children with autism were randomly assigned to
one of two groups and the parents were blind to which group their children were
assigned in this double-blind, randomized controlled trial. Although the study
was well designed, the pre-outcome and post-outcome measures are highly
problematic.Thesignicantndingswerereportedusingnon-autismspecic
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Section Two: How Do We Know What Works and What Doesn’t?
outcome measures or parental reporting. The Leiter International Performance
Scale-Revised(Leiter-R)istheoneinstrumentinthisstudythatmeasuresIQ.
It is often used on children with autism and administered by a clinical psycholo-
gist. The Leiter-R measure produced no difference between the experimental
and control group. This lack of difference in the Leiter-R suggests that electro-
acupuncture is not an effective treatment for children with autism.
Mostoftheabovetreatmentsusepoormeasuresofautism(foradiscussionof
the importance of an accurate measurement for autism, please refer to Section
II).Unfortunately,noneofthesetherapieshavebeentestedrigorouslyandnow
join the very large group of unsubstantiated treatments that considerably over-
reachintheefcacyclaimstheymake.
I eagerly await the rigorous testing of these treatments. In order for these treat-
ments to be tested competently, the researchers must be motivated by science
and the practitioners need to have no stake in the outcome of the science. In
most of the unsubstantiated treatments, those who make the claims of purported
efcacyalsotendtobemakingalivingprovidingthetreatment;objectivetest-
ing is thereby severely compromised.
An Apparent Convergence
Based on studies conducted in from 2007 to 2010, an interesting trend seems
tohaveemerged.Practitionersareborrowingtechniquesfromothertreatments
and incorporating them into their own therapies. This is occurring whether or
notthetreatmentsarescience-based.Oneexampleofwhereconvergenceisoc-
curringinascienticallyrigorousfashionisintheeldofbehavioraltreatment.
Onestudyincorporatesmusicintoabehavioralprogramtoincreaseepisodesof
jointengagement.AlthoughIdonotconsiderthisinanyway“MusicTherapy”,
the repetitive nature of music and the lack of reliance on language has made mu-
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446
sical venues i.e., music classes, choir, band, preferred places for mainstreaming
some children who are also in behavioral treatment programs. The study14,
whichwasdoneinascienticallyrigorousmanner,demonstratedthebetteruse
of musical venues versus toy play sessions for joint engagement. I suspect that
music classes have actually been a popular place to mainstream children with
autismsinceamusicclassrequiresnolanguage,andisquitepredictable;Iwas
pleasedtonallyseeastudydesignedaroundmusicinthismanner.Notethat
the child was not placed into a music class without any prior treatment to the
class and expected to suddenly be able to participate. The mainstreaming was
done as part of a comprehensive behavioral treatment program that prepared the
child to be able to take advantage of the musical venue. 14
Anothertrend I haveobservedsince the 2007publicationof the rstedition
ofthisbook,istheincorporationofverbalbehaviortechniquesintotraditional
early intensive behavioral programs. In one study15, toddlers and preschoolers
were treated using both applied behavior analysis and verbal behavior tech-
niquesina classroomforoneyear.Attheendoftheyear,thechildrenwere
movedintolessrestrictiveenvironments.Althoughatrstglancetheoutcome
of this study looks promising, several alarm bells go off when noting the study’s
over-emphasisoneconomicse.g.,thecostper“learnunit”favorablyreferenced
asbeingonly52cents.The fact that ninety-ve percent of the children pro-
gressed to less restrictive environments is an indirect measure of purported suc-
cess that tells us nothing about whether the egregious symptoms of autism were
ameliorated in any meaningful, measureable way. It tells us only about the
study’s success in saving school districts money rather than about the child’s
actual improvement. The other metric used in the study is whether the class-
widecumulativeobjectivesweremet.NowhereinthestudycouldIndexter-
nal, objective measures for each child that provide evidence that this treatment
program improves the symptoms of autism. These practitioners actually do
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Section Two: How Do We Know What Works and What Doesn’t?
providebehavioraltreatmentandtakedataonthevariousskillsacquired;how-
ever,ifthedelityofthetreatmentiscompromisedbyaneconomicimperative,
researchersinthebehavioraleldwillnotbeabletoclaimthekindoftreatment
outcomes that their behaviorist colleagues have enjoyed to date.
Another area where autism treatment convergence appears to be happening is
intheHanenMethod(seepage227ofthisbookforadiscussionoftheHanen
Method).Insteadofimprovingtheirdatacollectiontechniquesthroughscience
and, thereby, adding rigor to test their claims, the Hanen practitioners amalgam-
atedtheirmethodwithafewothermethods(suchasTEACCH–seepage83
foradiscussiononthismethod).16 They proceed to make claims regarding the
effectiveness of their treatment even though their method is now blended with
othermethods.Unfortunately,thislackofdelityintestingdoesnotmovethe
science of autism treatment forward, but rather adds to the general confusion
intheeld.Based on the newdata fromthis 2010study,regrettablyweare
no further ahead in determining whether there is any value whatsoever in the
Hanen method.
Art Therapy, which has produced questionable data, has now joined forces
with Group Therapy for children with autism. These practitioners combine Art
Therapyandcognitive-behavioraltechniquesinGroupTherapyinaneffortto
improve the social skills of children with autism. Unfortunately, the data col-
lected from this study is from parents and teachers, and not done in a way that
controls for bias. 17
Yet another two groups that have no rigorous data to report as of this writing,
are the SCERTS model and Music Therapy. Music therapists have now incor-
porated music therapy goals into the SCERTS model and presented new data
that supports the claim that these two treatments can work together. What is
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448
unfortunatehereisthatneithertheSCERTSModelnortheMusicTherapyeld
havebeensupportedwithrigorousdataregardingefcacy;therefore,thecom-
bination of Music Therapy and SCERTS simply confounds an already dubious
area where we are still waiting for robust outcome data. 18
Parents as Free Labor for Autism Treatment
Although this theme has always been present in the autism treatment literature,
itseemstohaveacceleratedoverthelastfouryearssincethersteditionofThe
Complete Guide to Autism Treatments was published. Generally, the parent as
therapistthemewasrelegatedtotherapiesthathadno scienticdatasupport-
ingthem e.g., theLearningto Speak Program,theOptions Institute,andthe
Floor-timeprogram.Oneofthemostprolicgroupsofpractitionerstryingto
promotethe“parentasfreelabor”paradigmistheEarlyStartDenverModel.
KeyredagsfortheEarlyStart Denver Model: 1) their push for furtherre-
ductionofautismtreatmentintensityisprerequisitetomaking theconceptof
“parentastherapist”lessabhorrent;2)theirlongdistancetrainingmodel,which
minimizes the cost of training the free labor. I would like to submit that instead
of spending all their time on the economics of autism healthcare, time would
bebetterspentontheimprovementoftheir“treatment”methodsothatitcan
besubmittedtotherigorsofdouble-blind,randomizedefcacystudies,which
Ihavebeenunabletondafteralltheseyears.Clearly,itappearsasthoughit
is easier to publish data on how to save money on autism treatment than it is to
producedataonsignicanttreatmentresults!19, 20, 21
The next group that very much seems to favor the concept of family as therapist,
isPositiveBehavioralSupport(PBS);theyhavealongwaytogoindeveloping
validatedtreatmentefcacy,yettheyarealreadydownloadingtheirexperimen-
tal“techniques” onto parents.22, 23, 24 Among the other groups attempting to
449
Section Two: How Do We Know What Works and What Doesn’t?
download their so-called treatments onto parents include the Hanen practitio-
ners,25, 26 the Pivotal Response Training practitioners,27, 28 the DIR/Floor-time
practitioners,29 and the RDI practitioners.30
For the most part, studies testing these dubious treatments are an attempt to
provethatparentsare “effective”treatment providers and thattheamountof
time needed for the intervention is minimal. In this manner, government con-
tractors can utilize questionable science to justify the rationing of resources
and the downloading of treatment responsibility onto families. Combined with
the normal responsibilities of life, it is little wonder that several studies have
reported that parents of children with autism have been found to be underpro-
ductive, as measured by their socio-economic status!31
The concept of parent as therapist apparently holds out so much promise in
some academic circles that a systematic review was done to try to plumb for
somekindofscienticevidencetosupportthepolicyofdownloadingautism
treatment responsibility to parents in the United Kingdom.32 Although the au-
thorsofthe2007studyadmitthatitisdifculttodrawconclusions,sincethe
parent as therapist studies are poorly done, the study’s authors have no problem
trumping up the value of parents as free labor for autism treatment. The authors
state,“Thereviewfoundveryfew studies that had adequate research design
from which to draw conclusions about the effectiveness of parent-implemented
earlyintervention”32; however, they still conclude that “randomized and con-
trolled studies tend to suggest”thatparentsastherapistsareeffective[emphasis
added].Onlyinthesub-optimalworldofautismtreatment,wouldparentsever
beconsideredas“goodenough”tofunctionastreatmentprofessionals.
PractitionersintheeldofEarlyIntensiveBehavioralTreatment(EIBI)have
also published studies over the last 20 years in which they demonstrate the
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
450
savings to the system if children receive early, intensive behavioral treatment;
however, this treatment is provided primarily by treatment professionals and
paraprofessionals rather than parents as the predominant element of the therapy.
That said, an unfortunate trend is also occurring amongst EIBI practitioners who
actuallydohaveevidencethatsupportstheefcacyoftheirtreatmentmethod.
Theyarestartingtodilutetreatmentdelitywithparentsastherapistsaswell.
This regrettable trend is occurring in Europe, primarily.33, 34
Competition Between Comprehensive Therapies
It is crucial that autism treatment studies claiming improvements in the condi-
tion, always compare their outcomes to the outcomes of relatively well-settled
treatments or best practices. Ethically, in order to offer the new treatment as
a replacement, it is imperative that the treatment outcomes of the newly tested
treatments are equal to or greater than those found in well-settled therapies.
Recently, this appears to be happening.
The TEACCH Program (both residential and home-based with inclusion at
school)wasevaluatedagainstinclusive,non-speciceducationinmainstream
schools.OneofthegoalswastodeterminehowtheTEACCHmethodworks
in a natural setting. Although such a comparison is a good idea, the comparison
group(childrenin a nonspecic,inclusiveprograms)isinappropriate. Their
study would have had much more value if they had a comparison group of chil-
dren in home-based intensive behavioral programs who were mainstreamed,
since that treatment modality is the main competitor to the TEACCH model.35
A two-year study36 attempts to compare a novel treatment with the most well-
settled treatment in a British study that compares a nursery school that specializ-
es in autism with an early intensive behavioral intervention program. Although
theexperimentalgroups are appropriate, andtheyreportinteresting ndings,
451
Section Two: How Do We Know What Works and What Doesn’t?
noconclusionscan bemaderegardingefcacyofthisstudydueto itshighly
awednature.Specically,thereisalackofrandomassignmenttogroups;
there are additional therapies that parents added to their children’s treatment
regime; the gains made by the children in the early intensive behavioral inter-
vention (EIBI) group are smaller than reported in other traditional intensive
behaviortreatmentprograms.Theseawsinspirelittlecondenceinthequal-
ityofthestudy.Inshort,iftheEIBIprogramisofapoorqualityandwithout
sufcientexpertise,itwouldmakesensethatthegroupswouldnotdifferatthe
end of the experiment. This study actually provides evidence as to what occurs
whenEIBItreatmentisdiluted,beitbylackoftrainingorinsufcientspecialist
oversight.Specically,thendingsthatwererecordedunderidealconditions
are not replicated.36 That said, at least we are moving in the right direction of
having competitors understand that they must evaluate their program against
the standard of intensive behavioral treatment programs before it can ethically
be offered to children with autism.
Inreviewingnewresearchproducedsincethersteditionofthisbook,itap-
pears that of all the treatment purveyors in the area of autism, the group of re-
searchers and practitioners that keep adding new evidence regarding treatment
efcacyarethoseintheeldofbehavioralautismtreatment;specically,they
are the practitioners utilizing the intensive behavior treatment model. Between
2006 and 2010, there have been several new studies, most of which compare
Intensive Behavioral Treatment to a variety of available offerings in the com-
munity. Consistently, the outcome of these studies is clear: Intensive Behav-
ioral Autism Treatment remains the one treatment protocol that continues to
showthemostbenetforchildrenafictedwiththecondition.Accordingtoall
available research, children with autism make the most gains in these types of
treatment programs.37, 38, 39, 40, 41, 42, 43, 44, 45
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
452
Incontrast,thenumberandqualityofstudiesthattestthePlayschool,Floor-
time,Optionsremainfewandfarbetween,arehighlyawedanddonotcom-
pare their treatment protocol against best practices.
Individual Techniques
By far, the most common studies that have been published since the 2007 edi-
tion of this book have been those that have tested individual techniques for
the treatment of autism. This is a positive step insofar as the manner in which
scienticknowledgeisgenerallyaccumulatedisviasmall,oftentedioussteps.
Eventually, these techniques can be amalgamated, put into treatment proto-
colsand, nally,tested. In otherwords,the way science-based,comprehen-
sivetreatmentprotocolsdevelopisbycombiningmanytechniquesthatarerst
testedindividually.Noteworthyis that asignicantnumberofrecentstudies
test Skinner’s Theory of Verbal Behavior using the population of children with
autism.Thesestudiestestoneparticulartechniqueatatime.Asofthiswriting,
thereisno comprehensive test amalgamatingalltheseSkinnerian techniques
into a general treatment protocol. I do not consider TEACCH a comprehensive
test of this because there is much in TEACCH that has nothing to do with Ver-
bal Behavior. That said, given that some experiments which test verbal behav-
iortechniquesareconductedinascienticallyvalidatedmanner,itwouldnot
beproblematictoincorporateindividual,scienticallysubstantiatedtechniques
into a traditional intensive behavioral program as long as data is collected on
skillacquisitionforeachchildandthereisacompellingreasontoincorporatea
newtechniquei.e.,thechildisnotsuccessfulwiththetechniquetypicallyused
in the well-settled treatment. Based on the data, this is where the role of a high-
lyskilledpractitionerisrequiredtoselectthetechniquesthathaveachanceof
working betterthanthetechniquebeingusedinthetraditionalbehavioraltreat-
ment program. An autism treatment practitioner will typically search through
theliteratureifachildisnotprogressingwiththewell-settledtechniqueandthe
453
Section Two: How Do We Know What Works and What Doesn’t?
verbalbehaviortechniqueisshowntobeeffectiveinacontrolledstudy.Atthis
point, data on that one child needs to be collected to discern whether the verbal
behaviortechniqueissuccessfulforthatone skill. In summary, there is no test
data thus far testing a comprehensive verbal behavior program against a behav-
ioral treatment program, where the verbal behavior program shows equal or
betterefcacy;however,verbalbehaviortechniquesthatfocusonanindividual
skill are beginning to emerge from the research literature.
Since2007,otherindividualtechniquesforthetreatmentofautismhavecome
fromavarietyofelds,wheremoststudiesareconductedpoorlyandwithout
anunderstandingofthescienticmethod.46, 47Oneareathatkeepsonpublish-
ingindividualtechniquesisMusicTherapy.Thestudiesareimprovingslowly;
however, there is still such a gap in understanding autism that almost every
studyhasobvious aws. An example isastudywhere children withautism
were taught animal names and symbols through a song; however, these skills
were not generalized. If skills are not generalized, they are useless.46 Another
example of lack of emphasis on generalization is a study where children were
taught a morning routine song which was composed by the music therapist,
customized to the child and taught to the teachers.47 The teachers would sing
the song to help children learn the morning routine. Researchers in this study
considered the lesson a success. From my perspective, however, the lesson is
notsuccessfulifthetechniquecannotbefadedandtheskillgeneralizedtothe
realworld.Onecannotexpecttheworldtosingtoachildwithautisminorder
for that child to preform a task. The child is not going to be in preschool for-
ever,andifthe“treatment”songcannotbefaded,thechildwillbecondemned
toaveryshelteredlife.Inaddition,thenextobviousquestioniswhetherthere
isamoreefcientwaytoteachchildrentheirmorningroutine.Thedaunting
challengeforparentsofchildrenwithautismisthattheirkidsneedtoacquire
so verymanyskills,building“brickbybrick”,itiscrucialthattheseskillsbe
acquiredeffectivelyandefciently!
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
454
Bottom Line – 2011
Insummary,thedataonselectedindividualtechniquesseemstobeimproving;
however, most fringe treatments have not yet provided data that can justify
their use on children with autism. As of this recent review of the literature, it
is abundantly clear that traditional Intensive Behavioral Treatment continues to
be the comprehensive treatment that has, by far, the most evidence in the sci-
enticliterature.IntensiveBehavioralTreatmentclearlyremainsthetreatment
ofchoiceforchildrenafictedwithautismspectrumdisorder.Thebehavioral
treatment protocol continues to see more encouraging research data added to
theeldeveryyear.
455
Section Two: How Do We Know What Works and What Doesn’t?
Endnotes for Afterword
Afterword: An Update to The Complete Guide to Autism Treatments – 2007 to 2010
1Cass, H. et al. 2008. “Absence of Urinary Opioid Peptides in Children with Autism.” Archives
of Disease in Childhood, Vol. 93, No. 9, pp. 745-750.
2Dettmer, K. et al. 2007. “Autism Andurinary Exogenous Neuropeptides: Development of an
On-line SPE-HPLC-tandem Mass Spectrometry Method to Test the Opioid Excess Theory.”
Analytical & Bioanalytical Chemistry, Vol. 388, No. 8, pp. 1643-1651.
3Seung, H. et al. 2007. “The Gluten- and Casein-free Diet and Autism: Communication Out-
comes from a Preliminary double-blind clinical trial.” Journal of Medical Speech-Language
Pathology, Vol. 15, No. 4, pp. 337-345.
4Reichow, B. et al. 2010. “Effects of Weighted Vests on the Engagement of Children with De-
velopmental Delays and Autism.” Focus on Autism and Other Developmental Disabilities,
Vol. 25, No. 1, pp. 3-11.
5Reichow, B. et al. 2009. “Brief Report: Effects of Pressure Vest Usage on Engagement and
Problem Behaviors of a Young Child with Developmental Delays.” Journal of Autism and
Developmental Disorders, Vol. 39, No. 8, pp. 1218-1221.
6Nathanson, D.E. 2007. “Reinforcement Effectiveness of Animatronic and Real Dolphins.” An-
throzoos, Vol. 20, No. 2, pp. 181-194.
7Corbett, B. et al. 2008. “Brief Report: The Effects of Tomatis Sound Therapy on Language in
Children with Autism.” Journal of Autism and Developmental Disorders, Vol. 38, No. 3, pp.
562-566.
8Handen, B.L. et al. 2009. “A Double-Blind, Placebo-Control Dysfunction in Children with Au-
tistic Disorder.” Journal of Autism & Developmental Disorders, Vol. 39, No. 5, pp. 796-805.
9Rossignol, D.A. et al. 2009. “Hyperbaric Treatment for Children with Autism: A Multicenter,
Randomized, Double-blind, Controlled Trial.” BMC Pediatrics, Vol. 9, No. 21, pp. 1-18.
10Lerman, D.C. et al. 2008. “Using Behavior Analysis to Examine the Outcomes of Unproven
Therapies: An Evaluation of Hyperbaric Oxygen Therapy for Children with Autism.” Behav-
ior Analysis in Practice, Vo1. 1, No. 2, pp. 50-58.
11S. Mukhopadhyay. 2010. Rapid Prompting Method. www.halo-soma.org (accessed Decem-
ber 1st, 2010).
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
456
12Silva, L.M.T., et al. 2009. “Qigong Massage Treatment for Sensory and Self-regulation
Problems in Young Children with Autism: A Randomized Controlled Trial.” The American
Journal of Occupational Therapy, Vol. 63, 423-432.
13Pineda, J.A. et al. 2008. “Positive Behavioral and Electrophysiological Changes Following
Neurofeedback Training in Children with Autism” Research in Autism Spectrum Disorders,
Vol. 2, pp. 557-581.
14Kim, J. et al. 2009. “Emotional, Motivational and Interpersonal Responsiveness of Children
with Autism in Improvisational Music Therapy.” Autism: The International Journal of Re-
search and Practice, Vol. 13, No. 4, pp. 389-409.
15Greenberg, J. J. et al. 2008. “Starting Off on the Right Foot: One Year of Behavior Analysis
in Practice and Relative Cost.” International Journal of Behavioral Consultation & Therapy,
Vol. 4, No. 2, pp. 212-226.
16McConkey, R. et al. 2010. “Preschoolers with Autism Spectrum Disorders: Evaluating the
Impact of a Home-based Intervention to Promote their Communication.” Early Child Devel-
opment & Care, Vol. 180, No. 3, pp. 299-315.
17Epp, K. M. 2008. “Outcome-based Evaluation of a Social Skills Program using Art Therapy
and Group Therapy for Children on the Autism Spectrum.” Children & Schools, Vol. 30, No.
1, pp. 27-36.
18Walworth, D. et al. 2009. “Using the SCERTS Model Assessment Tool to Identify Music
Therapy Goals for Clients with Autism Spectrum Disorder.” Journal of Music Therapy, Vol.
46, No. 3, pp. 204-216.
19Vismara, L.A. et al. 2009. “Can One Hour Per Week of Therapy Lead to Lasting Changes in
Young Children with Autism?” Autism, Vol. 13, No. 1, pp.93-115.
20Vismara, L.A. et al. 2009. “Dissemination of Evidenced-based Practice: Can We Train Thera-
pists From a Distance?” Journal of Autism & Developmental Disorders, Vol. 39, No. 12, pp.
1636-1651.
21Vismara, L.A. et al. 2008. “The Early Start Denver model: A Case Study of an Innovative
Practice.” Journal of Early Intervention, Vol. 31, No. 1, pp. 91-108.
22Binnendyk, L. et al. 2009. “A Family-Centered Positive Behavior Support Approach to the
Amelioration of Food Refusal Behavior. An Empirical Case Study.” Journal of Positive Be-
havior Interventions, Vol. 11, No. 1, pp. 49-62.
457
Section Two: How Do We Know What Works and What Doesn’t?
23Lucyshyn, J.M. et al. 2007. “Family Implementation of Positive Behavior Support for a Child
with Autism: Longitudinal, Single-case, Experimental and Descriptive Replication and Ex-
tension.” Journal of Positive Behavior Interventions, Vol. 9, No. 3, pp. 131-150.
24Lee, S. et al. 2007. “Lessons Learned Through Implementing a Positive Behavior Support
Intervention at Home: A Case Study on Self-management with a Student with Autism and
his Mother.” Education and Training in Developmental Disabilities, Vol. 42, No. 4, pp. 418-
427.
25Pennington, L. et al. 2007. “It Takes Two to Talk – The Hanen Program© and Families of
Children with Motor Disorders: A UK Perspective.” Child-care, Health and Development,
Vol. 33, No. 6, pp. 691-702.
26McConkey, R. et al. 2010. “Preschoolers with Autism Spectrum Disorders: Evaluating the
Impact of a Home-based Intervention to Promote their Communication.” Early Child Devel-
opment & Care, Vol. 180, No. 3, pp. 299-315.
27Baker-Ericzen, J.J. et al. 2007. “Child Demographics Associated with Outcomes in a Commu-
nity-based Pivotal Response Training Program.” Journal of Positive Behavior Interventions,
Vol. 9, No. 1, pp. 52-60.
28Nefdt, N. et al. 2010. “The Use of a Self-directed Learning Program to Provide Introductory
Training in Pivotal Response Treatment to Parents of Children with Autism.” Journal of Posi-
tive Behavior Interventions, Vol. 12, No. 1, pp. 23-32.
29Solomon, R. et al. 2007. “Pilot Study of a Parent Training Program for Young Children with
Autism: The Play Project Home Consultation Program.” Autism: The International Journal
of Research and Practice, Vol. 11, No. 3, pp. 205-224.
30Gutstein, S.E. 2009. “Empowering Families through Relationship Developmental Interven-
tion: An Important Part of the Biopsychosocial Management of Autism Spectrum Disor-
ders.” Annals of Clinical Psychiatry, Vol. 21, No. 3, pp. 174-182.
31Ganz, M.L. 2007. “The Lifetime Distribution of the Incremental Societal Costs of Autism.”
Archives of Pediatrics & Adolescent Medicine, Vol. 161, No. 4, pp. 343-349.
32McConachie, H. et al. 2007. “Parent Implemented Early Intervention for Young Children with
Autism Spectrum Disorder: A Systematic Review.” Journal of Evaluation in Clinical Prac-
tice, Vol. 13, No. 1, p. 1.
33Cordes, R. et al. 2010. “Behavioural Home-based Intensive Programs for Autistic Children
and their Parents.” Fruhforderung Interdisziplinar, Vol. 29, No. 1, pp. 22-31.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
458
34Anan, R.M. et al. 2008. “Group Intensive Family Training (FIGT) for Preschoolers with Au-
tism Spectrum Disorders.” Behavioral Interventions, Vol. 23, No. 3, pp. 165-180.
35Panerai, S. et al. 2009. “Special Education Versus Inclusive Education: The Role of the TE-
ACCH Program.” Journal of Autism and Developmental Disorders, Vol. 39, No. 6, pp. 874-
882.
36Magiati, I. et al. 2007. “A Two-year Prospective Follow-up Study of Community-based Early
Intensive Behavioural Intervention and Specialist Nursery Provision for Children with Au-
tism Spectrum Disorders.” Journal of Child Psychology and Psychiatry, Vol. 48, No. 8, pp.
803-821.
37Richards, A.L. et al. 2009. “One-year Follow-up of the Outcome of a Randomized Controlled
Trial of a Home-based Intervention Programme for Children with Autism and Developmental
Delay and their Families.” Child Care, Health & Development, Vol. 35, No. 5, pp. 593-602.
38Reed, P. et al. 2007. “Brief Report: Relative Effectiveness of Different Home-based Be-
havioral Approaches to Early Teaching Intervention.” Journal of Autism and Developmental
Disorders, Vol. 37, No. 9, pp. 1815-1821.
39Perry, A. et al. 2008. “Effectiveness of Intensive Behavioral Intervention in a Large, Commu-
nity-based Program.” Research in Autism Spectrum Disorders, Vol. 2, No. 4, pp. 621-642.
40Granpeesheh, D. et al. 2009. “The Effects of Age and Treatment Intensity on Behavioral In-
tervention Outcomes for Children with Autism Spectrum Disorders.” Research in Autism
Spectrum Disorders, Vol. 3, No. 4, (4), pp. 1014-1022.
41Hayward, D. et al. 2009. “Assessing Progress During Treatment for Young Children with Au-
tism Receiving Intensive Behavioural Interventions.” Autism, Vol. 13, No. 6, pp. 613-633.
42Zachor, D.A., et al. 2007. “Change in Autism Core Symptoms with Intervention.” Research
in Autism Spectrum Disorders, Vol. 1, No. 4, pp. 304-317.
43Ben-Itzchak, E. et al. 2007 “The Effects of Intellectual Functioning and Autism Severity on
Outcomes of Early Behavioral Intervention for Children with Autism.” Research in Develop-
mental Disabilities, Vol. 28, No. 3, pp. 287-303.
44Remington, B. et al. 2007. “Early Intensive Behavioral Intervention: Outcomes for Children
with Autism and their Parents after Two Years.” American Journal on Mental Retardation,
Vol. 112, No. 6, pp. 418-438.
459
Section Two: How Do We Know What Works and What Doesn’t?
45Chasson, G.S. et al. 2007. “Cost Comparison of Early Intensive Behavioral Intervention and
Special Education for Children with Autism.” Journal of Child and Family Studies, Vol. 16,
No. 3, pp. 401-413
46Simpson, K. et al. 2010. “Teaching Young Children with Autism Graphic Symbols Embed-
dedwithinanInteractiveSong.”Journal of Developmental and Physical Disabilities, Vol.
22, No. 2, pp. 165-177.
47Kern, P. et al. 2007. “Use of Songs to Promote Independence in Morning Greeting Routines
forYoungChildrenwithAutism.”Journal of Autism and Developmental Disorders, Vol. 37,
No. 7, pp. 1264-1271.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
460
References
461
References
Behavioral Treatment
Home-based Intensive Behavioral Treatment
Anderson, S.R., D.L. Avery, E.K. DiPietro, G.L. Edwards, and W.P. Christian. 1987. Intensive
Home-Based Early Intervention With Autistic Children. Education and Treatment of Children
10(4):352-366.
Baer, D.M. 1993. Commentaries on McEachin, Smith and Lovaas: Quasi-Random Assignment
Can Be As Convincing As Random Assignment. American Journal of Mental Retardation
97(4):374.
Bibby,P.,S.Eikeseth,N.T.Martin,O.C.Mudford,andD.Reeves.2002.ProgressandOutcomes
for Children With Autism Receiving Parent-Managed Intensive Interventions. Research in
Developmental Disabilities 23: 81-104.
Birnbrauer, J.S., and D.J. Leach. 1993. The Murdoch Early Intervention Program After 2 Years.
Behavior Change10(2):63-74.
Cohen, H., M. Amerine-Dickens, and T. Smith. 2006. Early Intensive Behavioral Treatment:
Replication of the UCLA Model in a Community Setting. Journal of Developmental and
Behavioral Pediatrics27(2S):S145-55.
Connor, M. 1998. A Review of Behavioural Early Intervention Programmes for Children with
Autism. Educational Psychology in Practice 14(2):109-117.
Dawson,G.,andJ.Osterling.1997.EarlyInterventioninAutism.In:M.J.Guralnick,ed., The
Effectiveness of early intervention. Baltimore,(MD):P.J.Brooks,pp307-326.
Eikeseth, S., T. Smith, E. Jahr, and S. Eldevik. 2002. Intensive Behavioral Treatment at School
For4to7Year-oldChildrenWithAutism:AOneYearComparisonControlledStudy.Behavior
Modication 26: 49-68.
Gresham, F.M., M.E. Beebe-Frankenberger, and D.L. MacMillan. 1999. A Selective Review of
Treatments for Children with Autism: Description and Methodological Considerations. School
Psycology Review28(4):559-575.
Guralnick,M.(ed).1999.Clinical Practice Guideline: Report of the Recommendation. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children (age0-3
years).Albany:NewYorkStateDepartmentofHealthIV-15.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
462
Howard, J.S., C.R. Sparkman, H.G. Cohen, G. Green, and H. Stanislaw. 2004. A Comparison of
Intensive Behavior Analytic and Eclectic Treatments for Young Children With Autism. Research
in Developmental Disabilities 26: 359-383.
Leaf, R., and J. McEachin. 1999. A work in Progress: Behavior management strategies and
a curriculum for intensive behavioral treatment of autism. N.Y: Different Road to Learning,
L.L.C.
Lovaas,O.I. 1979. Contrasting Illnessand Behavioral Models fortheTreatmentof Autistic
Children: A Historical Perspective. Journal of Autism and Developmental Disorders 9(4):
315-323.
LovaasO.I.1987.BehavioralTreatmentandNormalEducationalandIntellectualFunctioning
in Young Autistic Children. Journal of Consulting and Clinical Psychology 55(1):3-9.
Lovaas,O.I.1993.The Development of a Treatment-ResearchProjectforDevelopmentally
Disabled and Autistic Children. Journal of Applied Behavior Analysis26(4):617-630.
Lovaas, O.I. 2003. Teaching individuals with developmental delays: Basic intervention
techniques. Austin, TX: Pro-Ed, Inc.
Lovaas,O.I., andG.Buch.1997.IntenseBehavioralInterventionWithYoungChildrenWith
Autism. In: Nirbhay N. Sing, ed. Prevention and treatment of severe behavior problems: Models
and methods in developmental disabilities. PacicGrove(CA):Brooks/Cole Publishing61-
85.
Maurice, C., G. Green, and S.C. Luce. 1996. Behavioral intervention for young children with
autism. Austin, TX: Pro-Ed, Inc.
McEachin, J.J., T. Smith, and O.I. Lovaas. 1993. Long-Term Outcome for Children With
Autism Who Received Early Intensive Behavioral Treatment. American Journal on Mental
Retardation 97(4):359-372.
Metz, B., J.A. Mulick, and E.M. Butter. 2005. Autism: A late 20th century fad magnet. In: J.W.
Jacobson, R.M. Foxx and J.A. Mulick Controversial Therapies for Developmental Disabilities:
Fad, Fashion and Science in Professional Practice. Mahwah, NJ: Lawrence Erlbaum Associates,
237-264.
Pomeranz, K. 1999. Home-Based Behavioral Treatment. Journal of Autism and Developmental
Disorders29(5):425-426.
Sallows, G., and T. Graupner. 2002. Replication of the UCLA Model of Intensive Behavioral
Treatment: Results after Three Years. Early Autism Project Conference, Vancouver, BC.
Sallows,G.O., andT.D.Graupner.2005. IntensiveBehavioralTreatmentforChildrenWith
Autism:Four-YearOutcomeandPredictors. American Journal on Mental Retardation 110(6):
417-438.
Satcher, D. 1999. Mental health: A report of the surgeon general. US Public Health Service,
Bethesda, MD, www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html#autism,
(accessedJan11,2006).
References
463
Sheinkoph, S.J., and B. Siegel. 1998. Home-Based Behavioral Treatment of Young Children
With Autism. Journal of Autism and Developmental Disorders 28(1):15-23.
Siegel, B. 1999. Response to Pomeranz. Journal of Autism and Developmental Disorders29(5):
425-427.
Smith, T. 1993. Autism. In: T.R. Giles, ed. Handbook of Effective Psychotherapy. New York,
(NY):PlenumPress107-133.
Smith,T.,S.Eikeseth,M.Klevstrand,andO.I.Lovaas.1997.IntensiveBehavioralTreatmentfor
Preschoolers With Severe Mental Retardation and Pervasive Developmental Disorder. American
Journal on Mental Retardation102(3):238-24.
Smith, T., A. Groen, and J. Wynn. 2000. Randomized Trial of Intensive Early Intervention for
Children With Pervasive Developmental Disorder. American Journal on Mental Retardation
105: 269-285.
Volkmar, F., E.H. Cook, J. Pomeroy, G. Realmuto, and P. Tanguay. 1999. Practice Parameters
fortheAssessmentandTreatmentofChildren,AdolescentsandAdultsWithAutismandOther
Pervasive Developmental Disorders. Journal of the American Academy of Child and Adolescent
Psychiatry 38: 32S-54S.
Centre Based Intensive Behavioral Treatment
Bufngton,D.M.1998.ProceduresforTeachingAppropriateGesturalCommunicationSkills
to Children With Autism. Journal or Autism and Developmental Disorders 28(6):535-545.
Celiberti, D.A. 1997. The Differential and Temporal Effects of Antecedent Exercise on the
Self-Stimulatory Behavior of a Child with Autism. Research in Developmental Disabilities
18(2):139-150.
Fenske, E.C., S. Zalenski, P.J. Krants, and L.E. McClannahan. 1985. Age at Intervention and
TreatmentOutcomeforAutisticChildreninaComprehensiveInterventionProgram.Analysis
and Intervention in Developmental Disabilities 5: 49-58.
Glasberg, B.Z. 2000. The Development of Siblings’ Understanding of Autism Spectrum Disorders.
Journal of Autism and Developmental Disorders 30(2):143-156.
Handleman, J.S., and S.L. Harris. 1994. The Douglass Developmental Disabilities Center. In:
S.L. Harris, and J.S. Handleman Preschool Education Programs for Children With Autism,
Austin, TX: Pro-Ed Inc. 71-85.
Handleman, J.S., and S.L. Harris. 2000. Age and IQ at Intake as Predictors of Placement for Young
Children with Autism: A Four to Six-Year Follow-Up. Journal of Autism and Developmental
Disorders30(2):137-142.
Handleman, J.S., S.L. Harris, D. Celiberti, E. Lilleleht, and L. Tomchek. 1991. Developmental
Changes of Preschool Children with Autism and Normally Developing Peers. The
Transdisciplinary Journal1(2):137-143.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
464
Handleman, J.S., S.L. Harris, B. Kristoff, L Bass, and R. Gordon. 1990. Changes in Language
Development Among autistic and Peer Children in Segregated and Integrated Preschool Settings.
Journal of Autism and Developmental Disorders20(1):23-31.
Handleman, J.S., S.L. Harris, B. Kristoff, F. Fuentes, and M. Alessandri. 1991. A Specialized
Program for Preschool Children With Autism. Language, Speech, and Hearing Services in
Schools 22: 107-110.
Harris, S.L., and J.S. Handleman. 1994. The Douglass Development Disabilitites Center.
Preschool education programs for children with autism. Austin, TX: Pro-Ed Inc.
Harris, S.L., J.S. Handleman, B. Kristoff, L. Bass, and R. Gordon. 1990. Changes in Language
Development Among Autistic and Peer Children in Segregated and Integrated Preschool Setting.
Journal of Autism and Developmental Disorders 20(1):23-31.
Harris, S.L. 2000. Age and IQ at Intake as Predictors of Placement for Young Children With
Autism: A Four-to-Six-Year Follow-Up. Journal of Autism Developmental Disorders 30(2):
137-142.
Hoyson, M., B. Jamieson, and P.S. Strain. 1984. Individualized Group Instruction of Normally
Developing and Autistic-like Children: The LEAP Curriculum Model. Journal of the Division
for Early Childhood 8(2):157-172.
Jennett,H.K.2003.CommitmenttoPhilosophy,TeacherEfcacy,andBurnoutAmongTeachers
of Children With Autism. Journal of Autism and Developmental Disorders 33(6):583-593.
Kohler, F.W., P.S. Strain, M. Hoyson, L Davis, W.M. Donina, and N. Rapp. 1995. Using a
Group-OrientedContingencytoIncreaseSocialInteractionsBetweenChildrenWithAutismand
Their Peers. A Preliminary Analysis of Corollary Supportive Behaviors. Behavior Modication
19(1):10-32.
Kohler, F.W., P.S. Strain, M. Hoyson, and B. Jamieson. 1997. Merging Naturalistic Teaching and
Peer-BasedStrategiestoAddresstheIEPObjectivesofPreschoolerswithAutism:AnExamination
of Structural and Child Behavior Outcomes. Focus on Autism and Other Developmental
Disabilities 12(4):196-206.
Kohler,F.W.,P.S. Strain, and D.D. Shearer.1992. The OverturesofPreschool Social Skill
Intervention Agents- Differential Rates, Forms, and Functions. Behavior Modication 16(4):
525-542.
Kohler, F.W., P.S. Strain, and D.D. Shearer. 1996. Examining levels of social inclusion within
an integrated preschool for children with autism. In: Positive behavioral support: Including
people with difcult behavior in the community. Baltimore, MD: Paul H. Brookes Publishing
Co., 305-322.
Mclannahan, L.E., and P.J. Krants. 1997. Princeton Child Development Institute. Behavior and
Social Issues 7(1):65-68.
McLannahan, L.E., G.S. MacDuff, and P.J. Krantz. 2002. Behavior Analysis and Intervention
for Adults With Autism. Behavior Modication 26(1):9-27.
References
465
Olley,J.G.,F.R.Robbins,andM.Morelli-Robbins.1993.CurrentPracticesinEarlyIntervention
for Children With Autism. In: E. Schopler, M.E. and Van Bourgondien, Preschool Issues in
Autism. New York, NY: Plenum Press, 223-245.
Rogers, S.J., J.M. Herblson, H.C. Lewis, J. Pantone, and K. Rels. 1987. An Approach for
Enhancing the Symbolic, Communicative, and Interpersonal Functioning of Young Children
With Autism or Severe Emotional Handicaps. Journal of the Division for Early Childhood
10(2):135-148.
Strain,P.S.1981.ModicationofSociometricStatusandSocialInteractionwithMainstreamed
Mild Developmentally Disabled Children. Analysis and Intervention in Developmental
Disabilities 1: 157-169.
Strain, P.S. 1987. Parent Training With Young Autistic Children: A Report on the LEAP Model.
Zero to Three 7(3):7-12.
Strain, P.S. 1983. Generalization of Autistic Children’s Social Behavior Change: Effects of
Developmentally Integrated and Segregated Settings. Analysis and Intervention in Developmental
Disabilities 3: 23-34.
Strain, P.S., and L.K. Cordisco. 1994. LEAP Preschool. In: S.L. Harris and J.S. Handleman, eds.
Preschool education programs for children with autism. Austin, TX: Pro-Ed Inc., 225-244.
Strain, P.S., and M. Hoyson. 2000. The Need for Longitudinal, Intensive Social Skill Intervention:
LEAPFollow-Up Outcomes forChildrenWithAutism. Early Childhood Special Education
20(2):116-122.
Strain, P.S., M.M. Kerr, and E.U. Ragland. 1979. Effects of Peer-Mediated Social Initiations
and Prompting/Reinforcement Procedures on the Social Behavior of Autistic Children. Journal
of Autism and Developmental Disorders9(1):41-55.
Strain, P.S., F.W. Kohler, and H. Goldstein. 1996. Learning experiences, an alternative program:
Peer-mediated interventions for young children with autism. In: Psychosocial treatments for
child and adolescent disorders: Empirically based strategies for clinical practice. Washington,
DC: American Psychological Association, 573-587.
Strain, P.S., R.E. Shores, and M.A. Timm. 1977. Effects of Peer Social Initiations on the Behavior
of Withdrawn Preschool Children. Journal of Applied Behavior Analysis 10(2):289-298.
Weiss, M.J. 2002. Hardiness and Social Support as Predictors of Stress in Mothers of Typical
Children, Children With Autism, and Children With Mental Retardation. Autism 6(1):115-130.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
466
Offshoots of Behavioral Treatment
Pivotal Response Training
Ball, J. 1996. Increasing social interactions of preschoolers with autism through relationships
with typically developing peers. Practicum Report, Nova Southeastern University. 52.
Benaron, L. 2006. Pivotal Response Intervention Model. Pediatric Development and Behavior,
www.dbpeds.org,(accessedMay2,2006).
Bruinsma, Y., R.L. Koegel, and L.K. Koegel, 2004. Joint Attention and Children With Autism:
A Review of the Literature. Mental Retardation and Developmental Disabilities 10: 169-175.
Burke, J.C., and L. Cerniglia. 1990. Stimulus Complexity and Autistic Children’s Responsivity:
Assessing and Training a Pivotal Behavior. Journal of Autism and Developmental Disorders
20(2):233-253.
Delprato, D.J. 2001. Comparisons of Discrete-Trial and Normalized Behavioral Language
Intervention for Young Children With Autism. Journal of Autism and Developmental Disorders
31(3):315-325.
Koegel, L.K., S.M. Camarata, M. Valdez-Menchaca, and R.L. Koegel. 1998. Setting
Generalization of Question-Asking by Children With Autism. American Journal on Mental
Retardation 102(4):346-357.
Koegel, L.K., C.M. Carter, and R.L. Koegel. 2003. Teaching Children With Autism Self-
Initiations as a Pivotal Response. Topics in Language Disorders 23(2):134-145.
Koegel, L.K., et al. 1996. Positive Behavioral Support: Including People with Difcult Behavior
in the Community. Baltimore, MD: Paul H. Brookes Publishing Co.
Koegel, L.K., R.L. Koegel, and C.M. Carter. 1998. Pivotal Responses and the Natural Language
Teaching Paradigm. Seminars in Speech and Language19(4):355-371.
Koegel, L.K., R.L. Koegel, J.K. Harrower, and C.M. Carter. 1999. Pivotal Response Intervention
I:OverviewofApproach.Journal of the Association for Persons with Severe Handicaps 24(3):
174-185.
Koegel, L.K., R.L. Koegel, Y. Shoshan, and E. McNerney. 1999. Pivotal Response Intervention
II:PreliminaryLong-TermOutcomeData.Journal of the Association for Persons with Severe
Handicaps 24(3):186-198.
Koegel, R.L., S. Camarata, L.K. Koegel, A. Ben-Tall, and A.E. Smith. 1998. Increasing Speech
Intelligibility in Children With Autism. Journal of Autism and Developmental Disorders 28(3):
241-251.
Koegel, R.L., et al. 1996. Collateral Effects of Parent Training on Family Interactions. Journal
of Autism and Developmental Disorders, 26(3):347-359.
References
467
Koegel, R.L., and W.D. Frea. 1993. Treatment of Social Behavior in Autism Through the
ModicationofPivotalSocialSkills.Journal of Applied Behavior Analysis, 26(3):369-377.
Koegel, R.L., L.K. Koegel, and L.I. Brookman. 2003. Empirically supported pivotal response
interventions for children with autism. In: A.E. Kazdin, Evidence-based Psychotherapies for
Children and Adolescents. New York, NY: Guilford Press, 341-357.
Koegel, R.L., L.K. Koegel, and A. Surratt. 1992. Language Intervention and Disruptive Behavior
in Preschool Children With Autism. Journal of Autism and Developmental Disorders 22(2):
141-153.
Koegel, R.L., L. Schreibman, A. Good, L. Cerniglia, C. Murphy, and L.K. Koegel. 1989. How
To Teach Pivotal Behaviors to Children With Autism: A Training Manual. Santa Barbara, CA:
University of California.
Koegel, R.L., J.B. Symon, and L.K. Koegel. 2002. Parent Education for Families of Children
With Autism Living in Geographically Distant Areas. Journal of Positive Behavior Interventions
4(2):88-103.
Koegel, R.L., G.A. Werner, L.A. Vismara, and L.K. Koegel. 2005. The Effectiveness of
Consectually Supported Play Date Interactions Between Children With Autism and Typically
Developing Peers. Research and Practice for Persons With Severe Disabilities 30(2):93-102.
Laski, K.E., M.H. Charlop, and L. Schreibman. 1988. Training Parents to Use the Natural
Language Pardigm to Increase Their Autistic Children’s Speech. Journal of Applied Behavior
Analysis 21(4):391-400.
Pierce, K., and L. Schreibman. 1995. Increasing Complex Social Behaviors in Children With
Autism: Effects of Peer-Implemented Pivotal Response Training. Journal of Applied Behavior
Analysis 28(3):285-295.
Pierce, K., and L. Schreibman. 1997. Using Peer Trainers to Promote Social Behavior in Autism:
Are They Effective at Enhancing Multiple Social Modalities? Focus on Autism and Other
Developmental Disabilities12(4):207-218.
Pierce, K., and L. Schreibman. 1997. Multiple Peer Use of Pivotal Response Training to Increase
Social Behaviors of Classmates with Autism: Results from Trained and Untrained Peers. Journal
of Applied Behavior Analysis 30(1):157-160.
Schreibman, L., W.M. Kaneko, and R.L. Koegel. 1991. Positive Affect of Parents of Autistic
Children:AComparisonAcrossTwoTeachingTechniques. Association for Advancement of
Behavior Therapy22(4):479-490.
Schreibman, L., and R.L. Koegel. 1996. Fostering self-management: Parent delivered pivotal
response training for children with autistic disorder. In: E.D. Hibbs, and P.S. Jense, Psychosocial
Treatments for Child and Adolescent Disorders: Empirically Based Strategies for Clinical
Practice. Washington, DC: American Psychological Association, 525-552.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
468
Schreibman, L., A.C. Stahmer, and K.L. Pierce. 1996. Alternative applications of pivotal
response training: Teaching symbolic play and social interaction skills. In: L.K. Koegel, and R.L.
Koegel, Positive Behavioral Support: Including People With Diffcult Behavior in the Community.
Baltimore, MD: Paul H. Brookes Publishing Co., 353-371.
Stahmer, A.C. 1995. Teaching Symbolic Play Skills to Children With Autism Using Pivotal
Response Training. Journal of Autism and Developmental Disorders 25(2):123-141.
Stahmer, A.C. 1999. Using Pivotal Response Training to Facilitate Appropriate Play in Children
With Autistic Spectrum Disorders. Child Language Teaching and Therapy 15(1):29-40.
Stahmer, A.C., B. Ingersoll, and C. Carter. 2003. Behavioral Approaches to Promoting Play.
Autism 7(4):401-413.
Terpstra, J.E., K. Iggins, and T. Pierce. 2002. Can I Play? Classroom-Based Interventions
for Teaching Play Skills to Children With Autism. Focus on Autism and Other Developmental
Disabilities 17(2):119-126,128.
Thorp, D.M., A.C. Stahmer, and L. Schreibman. 1995. Effects of Sociodramatic Play Training
on Children With Autism. Journal of Autism and Developmental Disorders 25(3):265-282.
Verbal Behavior
Braam, S.J., and A. Poling. 1983. Development of Intraverbal Behavior in Mentally Retarded
IndividualsThroughTransferofStimulusControlProcedures:ClassicationofVerbalResponses.
Applied Research in Mental Retardation(4):279-301.
Carr, J.E., and A.M. Firth. 2005. The Verbal Behavior Approach to Early and Intensive Behavioral
Intervention for Autism: A Call for Additional Empirical Support. Journal of Early and Intensive
Behavioral Intervention2(1):18-27.
Drash, P.W., L.R. High, and R.M. Tudor. 1999. Using Mand Training to Establish an Echoic
Repertoire in Young Children With Autism. The Analysis of Verbal Behavior 16: 29-44.
Drash, P.W., and R.M. Tudor. 2004. Is Autism a Preventable Disorder of Verbal Behavior? A
Response to Five Commentaries. The Analysis of Verbal Behavior 20: 55-62.
Drash, P.W., and R.M. Tudor. 2004. An Analysis of Autism as a Contingency-Shaped Disorder
of Verbal Behavior. The Analysis of Verbal Behavior 20: 5-23.
Miguel, C.F., J.E. Carr, and J. Michael. 2002. The Effects of a Stimulus-Stimulus Pairing
Procedure on the Vocal Behavior of Children Diagnosed With Autism. The Analysis of Verbal
Behavior 18: 3-13.
Oah,S.,andA.M.Dickinson.1989.AReviewofEmpiricalStudiesofVerbalBehavior.The
Analysis of Verbal Behavior 7: 53-68.
Skinner, B.I. 1957. Verbal Behavior. New York, NY: Appleton-Centry-Crofts.
References
469
Sundberg, M.L. and J.W. Partington. 1998. Teaching Language to Children With Autism or
Other Developmental Disorders. Danville, CA: Behavior Analysis, Inc.
Sundberg,M.L.,M.Loeb,L.Hale,andP.Eigenheer.2002.ContrivingEstablishingOperations
to Teach Mands for Information. The Analysis of Verbal Behavior 18: 15-29.
Positive Behavior Support
Boettcher, M., R.L. Koegel, E.K. McNerney, and L.K. Koegel. 2003. A Family-Centered
Prevention Approach to PBS in a Time of Crisis. Journal of Positive Behavior Interventions
5(1):55-59.
Buschbacher, P.W., and L. Fox. 2003. Understanding and Intervening With the Challenging
Behavior of Young Children With Autism Spectrum Disorder. Language, Speech and Hearing
Services in Schools34(3):217-227.
Carr, E.G., G. Dunlap, R.H. Horner, R.L. Koegel, A.P. Turnbull, W. Sailor, et al. 2002. Positive
Behavior Support: Evolution of an Applied Science. Journal of Positive Behavior Interventions
4: 4-16, 20.
Durand,V.M.,andN.Rost.2005.DoesItMatterWhoParticipatesInOurStudies?Journal of
Positive Behavior Interventions7(3):186-188.
Fucilla, R. 2005. Post-crisis Intervention for Individuals With Autism Spectrum Disorder.
Reclaiming Children and Youth14(1):44-51.
Lucyshyn, J.M., and R.W. Albin. 2002. Families and Positive Behavior Support: Addressing
Problem Behavior in Family Contexts. Baltimore, MD: Paul H. Brookes Publishing.
Marshall, J.K., and P. Mirenda. 2002. Parent Professional Collaboration for Positive Behavior
Support in the Home. Focus on Autism and Other Developmental Disabilities 17(4): 216-
228.
McCurdy, B.L., M.C. Manella, and N. Eldridge. 2003. Positive Behavior Support in Urban
Schools: Can We Prevent the Escalation of Antisocial Behavior? Journal of Positive Behavior
Interventions5(3):158-170.
Mulick, J.A., and E.M. Butter. 2005. Positive behavior support: A paternalistic utopian delusion.
In: J.W. Jacoson, R.M. Foxx, and J.A. Mulick, Controversial Therapies for Developmental
Disabilities: Fad, Fashion, and Science in Professional Practice. London, NJ: Lawrence Erlbaum
Associates, 385-404.
Wehamn,T.,andL.Gilkerson.1999.ParentsofYoungChildrenWithSpecialNeedsSpeakOut:
Perceptions of Early Intervention Services. Infant-Toddler Intervention: The Transdisciplinary
Journal9(2):137-167.
Zane, T. 2005. Fads in special education: An overview. In: J.W. Jacobson, R.M. Foxx, and J.A.
Mulick, Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in
Professional Practice. London, NJ: Lawrence Erlbaum Associates, 175-192.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
470
Fluency Training
Binder, C. 1988. Precision Teaching: Measuring and Attaining Exemplary Academic
Achievement. Youth Policy10(7):12-15.
Binder, C. 1993. Behavioral Fluency: A New Paradigm. Educational Technology 33(10):
8-14.
Fabrizio, M.A., S. Pahl, and A. Moors. 2002. Improving Speech Intelligibility Through Precision
Teaching. Journal of Precision Teaching and Celeration18(1):25-27.
Fabrizio, M.A., and K. Schirmer. 2002. Teaching Visual Pattern Imitation to a Child With Autism.
Journal of Precision Teaching and Celeration18(1):80-82.
Fabrizio, M.A., K. Schirmer, and K. Ferris. 2002. Tracking Curricular Progress With Precision.
Journal of Precision Teaching and Celeration 18(2):78-79.
Fabrizio, M.A., K. Schirmer, E. Vu, A. Diakite, and M. Yao. 2003. Analog Analysis of Two
Variables Related to the Joint Attention of a Toddler With Autism. Journal of Precision Teaching
and Celeration 19(1):41-44.
King, A., A.L. Moors, and M.A. Fabrizio. 2003. Concurrently Teaching Multiple Verbal
OperantsRelated toPrepositionUseto aChildWithAutism.Journal of Precision Teaching
and Celeration19(1):38-40.
Moor,A.,andM.A.Fabrizio.2002.UsingToolSkillRatestoPredictCompositeSkillFrequency
Aims. Journal of Precision Teaching and Celeration18(1):28-29.
TheFluencyProject,Inc.,http://www.uency.org,(accessedMay2,2006).
Zambolin, K., M.A. Fabrizio, and S. Isley. 2004. Teaching a Child with Autism to Answer
Informational Questions Using Precision Teaching. Journal of Precision Teaching and Celeration
20(1):22-25.
References
471
Other School-based Therapies (non-behavioral)
TEACCH
Al Saad, S. 2000. Implementation of an Educational Program for Children With Autism: The
Case of Kuwait. International Journal of Mental Health 29(2):32-43.
Aoyama,S.,1995.TheEfcacyofStructuringtheWorkSystem:IndividualizationoftheWork
Format and the Use of a 3-level Paper Rack in a Special Education Class. Japanese Journal of
Special Education 32(5):1-5.
Cox, R.D., and E. Schopler. 1993. Aggression and Self-injurious Behaviors in Persons with
Autism: The TEACCH Approach. International Journal of Child and Adolescent Psychiatry
56(2):85-90.
Durnik,M.,J.M.Dougherty,andT.Andersson.2000. InuenceoftheTEACCHprogramin
Sweden. International Journal of Mental Health 29(1):72-87.
Durham, C. 2000. Evolution of Services for People with Autism and Their Families in France:
InuenceoftheTEACCHProgram.International Journal of Mental Health 29(1):22-34.
Fuentes, J., R. Barinaga, and I. Gallano. 2000. Applying TEACCH in Developing Autism Services
in Sapin: The GAUTENA Project. Internaltional Journal of Mental Health 29(2):78-88.
Grindstaff, J.P. 2002. Further Evaluation of TEACCH’s Experiential Training Programs. Change
in Participants’ Knowledge, Attributions and Use of Structure. The Sciences and Engineering,
Section B 62(11-B):5374.
Haussler, A. 1999. Parents’ Attitudes and Experiences Regarding Treatment for Children With
Autism: A Cross-national Study. The Sciences and Engineering, Section B: 59(7-B):3734.
Howley,M.,D.Preecem,andT.Arnold,2001.MultidisciplinaryUseof“StructuredTeaching”
to promote Consistency of Approach for Children With Autistic Spectrum Disorder. Educational
and Child Psychology 18(2):41-52.
Hungelmann, A.M. 2001. An Analysis of TEACCH-Based Home Programming for Young
Children With Autism. The Sciences and Engineering, Section B: 61(10-B):5567.
Jennett,H.K.,S.L.Harris,andG.B.Mesibov.2003.CommitmenttoPhilosophy,TeacherEfcacy
and Burnout Among Teachers of Children With Autism. Journal of Autism and Developmental
Disorders 33(6):583-593.
Keel, J.H., G. B. Mesibov, and A.V. Woods. 1997. TEACCH-Supported Employment Program.
Journal of Autism and Developmental Disorders 27(1):3-9.
Kielinen, M. 2002. Some Aspects of Treatment and Habilitation of Children and Adolescents
With Autistic Disorder in Northern Finland. International Journal of Circumpolar Health 61(2):
69-79.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
472
Kunce, L, and G.B. Mesibov. 1998. Educational approaches to high-functioning autism and
asperger syndrome. In: E. Schopler, and G.B. Mesibov, Asperger Syndrome or High-Functioning
Autism? New York, NY: Plenum Press, 227-261.
Lansing, M.D. 1989. Educational evaluation. In: Christopher Gillberg, Diagnosis and Treatment
of Autism. New York, NY: Plenum Press, 151-166.
Lord, C., M.M. Bristol, and E. Schopler. 1993. Early Intervention for Children With Autism
and Related Developmental Disorders. In: E. Schopler, and M.E. Van Bourgondien, Preschool
Issues in Autism. New York, NY: Plenum Press, 199-221.
Lord, C., and E. Schopler. 1994. TEACCH Services for Preschool Children. In: S.L. Harris,
and J.S. Handelman, eds. Preschool Education Programs for Children With Autism. Austin,
TX: Pro-Ed, Inc, 87-105.
Magerotte, G. 2000. From Quality of Services to Quality of Life of Persons With Autism:
Contributions to Research, Training and Community Services of the University of Mons-Hainaut.
International Journal of Mental Health 29(2):60-77.
Marcus, L.M. 1990. Training of Psychologists in Autism and Related Severe Development
Disorders. In: Phyllis R. Magrab, and Paul Wohlford, Improving Psychological Services for
Children and Adolescents With Severe Mental Disorders: Clinical Training in Psychology.
Washington, DC: American Psychological Association, 133-137.
Marcus, L.M., M. Lansing, and E. Schopler. 1993. Assessment of Children With Autism and
Pervasive Developmental Disorder. In: J.L. Culbertson, and D.J. Willis, Testing Young Children:
A Reference Guide for Developmental, Psychoeducational and Psychosocial Assessments. Austin,
TX: Pro-Ed, Inc., 319-344.
Marcus, L.M., and G.B. Mesibov. 1987. Comprehensive Services for Adolescents With Autism.
International Journal of Adolescent Medicine and Health 3(2):145-154.
Marcus, L.M., and E. Schopler. 1989. Parents as Co-Therapists With Autistic Children. In:
Charles E. Schaefer, and James M. Briesmeister, Handbook of Parent Training: Parents as
Co-Therapists for Children’s Behavior Problems. Oxford, England: John Wiley and Sons,
337-360.
Mesibov, G.B. 1988. Diagnosis and Assessment of Autistic Adolescents and Adults. In: Eric
Schopler, and Gary B. Mesibov, Diagnosis and Assessment in Autism. New York, NY: Plenum
Press, 227-238.
Mesibov, G.B. 1994. A Comprehensive Program for Serving People With Autism and Their
Families: The TEACCH Model. In: J.L. Matson, Autism in Children and Adults: Etiology,
Assessment and Intervention. Belmont, CA: Brooks/Cole Publishing Co., 85-97.
Mesibov, G.B. 1997. Formal and Informal Measures on the Effectiveness of the TEACCH
programme. Autism 1(1):25-35.
Micheli, E. 2000. Dealing With the Reality of Autism: A Psychoeducational Program in Milan,
Italy. International Journal of Mental Health 29(1):50-71.
References
473
Mesibov, G.B., E. Schopler, and W. Caison. 1989. The Adolescent and Adult Psychoeducational
Prole:AssessmentofAdolescentsandAdultsWithSevereDevelopmentalHandicaps.Journal
of Autism and Developmental Disorders 19(1):33-39.
Mesibov, G.B., E. Schopler, and K.A. Hearsey. 1994. Structured Teaching. In: Eric Schopler,
and Gary B. Mesibov, Behavioral Issues in Autism. New York, NY: Plenum Press, 195-207.
Ono,M.,1994.ATrialinApplyingtheTEACCHPrograminaChildren’sCounselingService.
Japanese Journal of Special Education31(5):15-22.
Ozonoff,S.,andK.Cathcart.1998.EffectivenessofaHomeProgramInterventionforYoung
Children with Autism. Journal of Autism and Developmental Disorders 28(1):25-32.
Panerai,S.J.2002.BenetsoftheTreatmentandEducationofAutisticandCommunication
Handicapped Children. Intellectual Disability Research 46(4):318-327.
Panerai, S., L. Ferrante, and V. Caputo. 1997. The TEACCH Strategy in Mentally Retarded
Children With Autism: A Multidimensional Assessment. Pilot Study. Journal of Autism and
Developmental Disorders 27(3):345-347.
Panerai, S., L. Ferrante, V. Caputo, and C. Impellizzeri. 1998. Use of Structured Teaching for
Treatment of Children With Autism and Severe and Profound Mental Retardation. Education
and Training in Mental Retardation and Developmental Disabilities 33(4):367-374.
Peeters, T. 2000. The Role of Training in Developing Services for Persons With Autism and
Their Families. International Journal of Mental Health 29(2):44-59.
Persson, B. 2000. A Longitudinal Study of Quality of Life and Independence Among Adult Men
With Autism. Brief Report. Journal of Autism and Developmental Disorders 30(1):61-66.
Porter M.E. 1980. Effect of Vocational Instruction on Academic Achievement. Exceptional
Children 46(6):463-464.
Preece, D., K. Lovett, and P. Lovett. 2000. The Adoption of TEACCH in Northamptonshire, UK.
AUniqueCollaborationBetweenaVoluntaryOrganizationandaLocalAuthority. International
Journal of Mental Health 29(2):19-31.
Rogé, B. 2000. Meeting the Needs of Persons With Autism: A Regional Network Model.
International Journal of Mental Health 29(1):35-49.
Sasaki, M. 2000. Aspects of Autism in Japan Before and After the Introduction of TEACCH.
International Journal of Mental Health 29(2):3-18.
Schopler, E. 1986. A New Approach to Autism. Social Science 71(2-3):183-185.
Schopler,E.1987.SpecicandNonspecicFactorsintheEffectivenessofaTreatmentSystem.
American Psychologist 42(4):376-383.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
474
Schopler, E. 1989. Principles for Directing Both Educational Treatment and Research. In:
Christopher Gillberg, Diagnosis and Treatment of Autism. New York, NY: Plenum Press, 167-
183.
Schopler, E. 1991. Current and Past Research on Autistic Children and Their Families.
Conducted by Division TEACCH, Chapel Hill, NC: TEACCH, Research Report, ED 339161.
Schopler, E. 1994. Behavioral Priorities for Autism and Related Developmental Disorders.
In: Eric Schopler, and Gary B. Mesibov, Behavioral Issues in Autism. New York, NY: Plenum
Press, 55-77.
Schopler, E. 1998. Prevention and Management of Behavior Problems: The TEACCH Approach.
In: E. Sanavio, Behavior and Cognitive Therapy Today: Essays in Honor of Hans J. Eysenck.
Oxford,England:ElsevierScienceLtd.,249-259.
Schopler, E., and J.M. Hennike. 1990. Past and Present Trends in Residential Treatment. Journal
of Autism and Developmental Disorders20(3):291-298.
Schopler, E., and G.B. Mesibov. 2000. Cross-Cultural Priorities in Developing Autism Services.
International Journal of Mental Health 29(1):3-21.
Schopler, E., G. Mesibov, and A. Baker. 1982. Evaluation of Treatment for Autistic Children
and Their Parents. Journal of the American Academy of Child Psychiatry 21(3):262-267.
Schopler, E., G.B. Mesibov, and K. Hearsey. 1995. Structured Teaching in the TEACCH System.
In: Eric Schopler, and Gary B. Mesibov, Learning and Cognition in Autism. New York, NY:
Plenum Press, 243-268.
Short,A.B.,and E.Schopler.1988.FactorsRelatingtoAgeof OnsetinAutism.Journal of
Autism and Developmental Disorders 18(2):207-216.
Schultheis, S.F., B.B. Boswell, and J. Decker, 2000. Successful Physical Activity Programming
for Students With Autism. Focus on Autism and Other Developmental Disabilities 15(3):159-
162.
Shulman, C. 2000. Services for Persons With Autism in Israel. International Journal of Mental
Health 29(1):88-97.
Sloan, J.L., and E. Schopler. 1977. Some Thoughts About Developing Programs for Autistic
Adolescents. Journal of Pediatric Psychology 2(4):187-190.
Smith,T.1999.OutcomeofEarlyInterventionforChildrenWithAutism.Clinical Psychology:
Science and Practice 6(1):33-49.
Van Bourgondien, M.E. 1993. Behavior Management in the Preschool Years. In: Eric Schopler,
and M. E. Van Bourgondien, Preschool Issues in Autism. New York, NY: Plenum Press, 129-
145.
Van Bourgondien, M.E., N.C. Reichle, and E. Schopler. 2003. Effects of a Model Treatment
Approach on Adults With Autism. Journal of Autism and Developmental Disorders 33(2):
131-140.
References
475
Van Bourgondien, M.E., and E. Schopler. 1990. Critical Issues in the Residential Care of People
with Autism. Journal of Autism and Developmental Disorders 20(3):391-399.
Wall, A.J. 1990. Group Homes in North Carolina for Children and Adults with Autism. Journal
of Autism and Developmental Disorders 20(3):353-366.
The Playschool (Colorado Health Sciences Center)
Rogers, S.J. 1998. Empirically Supported Comprehensive Treatments for Young Children With
Autism. Journal of Clinical Child Psychology 27(2):168-179.
Rogers, S.J., and D.L. DiLalla. 1991. A Comparative Study of the Effects of a Developmentally
BasedInstructionalModelonYoungChildrenWithAutismand YoungChildrenWithOther
Disorders of Behavior and Development. Topics in Early Childhood Special Education 11(2):
29-47.
Rogers, S.J., J.M Herbison, H.C. Lewis, J. Pantone, and K. Reis. 1986. An Approach for
Enchancing the Symbolic, Communicative, and Interpersonal Functioning of Young Children
With Autism or Severe Emotional Handicaps. Journal of the Division for Early Childhood
10(2):135-148.
Rogers, S.J., and H. Lewis. 1989. An Effective Day Treatment Model for Young Children With
Pervasive Developmental Disorders. The American Academy of Child and Adolescent Psychiatry
28(2):207-214.
Rogers, S., H.C. Lewis, and K. Reis. 1987. An Effective Procedure for Training Early Special
Education Teams to Implement a Model Program. Journal of the Division for Early Childhood
11(2):180-188.
Weiss, R.C. 1981. INREAL Intervention for Language Handicapped and Bilingual Children.
Journal of the Division of Early Childhood 4: 40-51.
Giant Steps
Kim, S., L. Richardson, G. Yard, M. Cleveand, and K. Keller. 1998. Giant Steps-St. Louis:
An Alternative Intervention Model for Children with Autism. Focus on Autism and Other
Developmental Disabilities 13(2):101-107.
Higashi/Daily Life Therapy
Larkin, A.S., and S. Gurry. 1998. Brief Report: Progress Reported in Three Children with Autism
Using Daily Life Therapy. Journal of Autism and Developmental Disorders28(4):339-342.
Quill, K., S. Gurry, and A. Larkin. 1989. Daily Life Therapy: A Japanese Model for Educating
Children With Autism. Journal of Autism and Developmental Disorders 19(4):625-635.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
476
Sallows, G. 2000. Educational Interventions for Children With Autism in the UK. Early Child
Development and Care 163: 25-47.
Saegusa, T. 1991. The Providence of Nature: Teaching Autistic Children. Educational Forum
55(2):139-153.
Smith,Tristram.1996.AreOtherTreatmentsEffective?In:C.Maurice,G.Green,andS.Luce,
Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals.
Austin, TX: Pro-Ed Inc., 45-59.
Walden Program
Elliott,R.O.Jr.,etal.1991.AnalogLanguageTeachingVersusNaturalLanguageTeaching:
Generalization and Retention of Language Learning for Adults With Autism and Mental
Retardation. Journal of Autism and Developmental Disorders 21(4):433-447.
Farmer-Dougan,V.1994.IncreasingRequestsbyAdultsWithDevelopmentalDisabilitiesUsing
Incidental Teaching by Peers. Journal of Applied Behavior Analysis27(3):533-544.
Mc Gee, G.G., et al. 1985. The Facilitative Effects of Incidental Teaching on Preposition Use
by Autistic Children. Journal of Applied Behavior Analysis 18(1):17-31.
Mc Gee, G.G., et al. 1986. An Extension of Incidental Teaching Procedures to Reading Instruction
for Autistic Children. Journal of Applied Behavior Analysis 19(2):147-157.
McGee, G.G., et al. 1992. Promoting Reciprocal Interactions via Peer Incidental Teaching.
Journal of Applied Behavior Analysis 25(1):117-126.
McGee, G.G., T. Daly, and H.A. Jacobs. 1994. The Walden Preschool. In: S. L. Harris, and
J.S. Handleman, eds., Preschool Education Programs for Children With Autism. Austin, TX:
Pro-Ed Inc.
McGee, G.G., M.J. Morrier, T. Daly, 1999. An Incidental Teaching Approach to Early
Intervention for Toddlers With Autism. Journal of the Association for Persons With Severe
Handicaps, 24(3):133-146.
Miranda-Linne,F.,andL.Melin.1992.Acquisition,Generalizationand SpontaneousUseof
Color Adjectives: A Comparison of Incidental Teaching and Traditional Discrete-Trial Procedures
for Children With Autism. Research in Developmental Disabilities 13(3):191-210.
Parisy, D. 1999. Early Intervention: The View From a Distance. Journal of the Association for
Persons With Severe Handicaps 24(3):226-229.
Stahmer, A.C., and B. Ingersoll. 2004. Inclusive Programming for Toddlers With Autism
SpectrumDisorders:OutcomesFromtheChildren’sToddlerSchool.Journal of Positive Behavior
Interventions 6(2):67-82.
References
477
Child-lead Parent-facilitated Therapies
Greenspan/ Developmental, Individual Difference Relationship Model
(DIR) Floor-Time
Greenspan, S.I. 1992. Infancy and early childhood: The practice of clinical assessment
and intervention with emotional and developmental challenges. Madison, CT: International
Universities Press.
Greenspan S.I. 1993. Autism: AKA Communication Disorder. Journal of the American Academy
of Child and Adolescent Psychiatry32(1):221-222.
Greenspan, S. I. 1997. “Autism”: Comment. New England Journal of Medicine 337(21):
1556.
Greenspan, S.I. 2000. Children With Autistic Spectrum Disorders: Individual Differences, Affect,
Interaction,andOutcomes. Psychoanalytic Inquiry20(5):675-703.
Greenspan, S. I., and G.A. DeGangi. 1988. The Development of Sensory Functions in Infants.
Physical and Occupational Therapy in Pediatrics8(4):21-33.
Greenspan, S. I., G.A. DeGangi, and R.A. Berk. 1988. The Clinical Measurement of Sensory
Functioning in Infants: A Preliminary Study. Physical and Occupational Therapy in Pediatrics
8(2-3):1-23.
Greenspan,S.I., and S.Wieder.1997. Developmental Patterns andOutcomesinInfants and
Children With Disorders in Relating and Communicating: A Chart Review of 200 Cases of
Children With Autistic Spectrum Diagnoses. Journal of Developmental and Learning Disorders
1(1):87-141.
Greenspan, S.I., and S. Wieder. 1999. A Functional Developmental Approach to Autism Spectrum
Disorders. Journal of the Association for Persons with Severe Handicaps24(3):147-161.
Greenspan, S.I., and S.Wieder. 2000. A developmental approach to difculties in relating
and communicating in autism spectrum disorders and related syndromes. In: A.M. Wetherby,
and B.M. Prizont, Autism Spectrum Disorders: A Transactional Developmental Perspective.
Baltimore, MD: Paul H. Brookes Publishing Co., 279-306.
Greenspan, S.I., S. Wieder, and R. Simons. 1998. The child with special needs: Encouraging
intellectual and emotional growth. Reading, MA: Addison-Wesley/Addison Wesley Longman,
Inc.
Guralnick, M., ed. 1999. Clinical practice guideline: Report of the Recommendations. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children (age0-3
years).Albany(NY):NewYorkStateDepartmentofHealth,IV-15to21,IV-24.
Wieder, S., and S.I. Greenspan. 2003. Climbing the Symbolic Ladder in the DIR Model Through
Floor Time/Interactive Play. Autism7(4):425-435.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
478
Son-Rise /Options Institute
Egan, C. Personal communication, April 14, 2000.
Kaufman, B.N. 1994. Son-Rise: The Miracle Continues. SKOLE: The Journal of Alternative
Education, 11(2):93-104.
Kaufman,N., andS.L.Kaufman. 1997.The‘HEART”ofWhatWeTeach. In: The Son-Rise
Program. Shefeld,MA:OptionInstitute.
Williams, K.R., and J.G. Wishart. 2003. The Son-Rise program intervention for Autism: An
investigation into family experiences. Journal of Intellectual Disbility Research47(4-5):291-
299.
Relationship Development Intervention
Gustein, S.E. 2002. The Effectiveness of RDI: Preliminary Evaluation of the Relationship
Development Intervention Program, The Connections Center, Houston, TX, 2-14. http://www.
rdiconnect.com,(accessedonApr.4,2006).
Gustein, S.E. 2004. The Effectiveness of Relationship Development Intervention in Remediating
CoreDecitsofAutism-SpectrumChildren. Journal of Developmental and Behavioral Pediatrics
25(5):375.
Gutstein, S.E., and R. Sheely. 2002. Relationship Development Intervention Activities for Young
Children. London,UK: Jessica Kingsley Publications.
Gustein, S.E., and R. Sheely. n.d. Introductory guide for parents, going to the heart of autism,
asperger syndrome and pervasive development disorder, www.rdiconnect.com,(accessed on
Oct.25,2005).
Gutstein,S.E.,andR.Sheely.2002 (a). Relationship Development Intervention With Young
Children, Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD
and NLD. London, UK: Jessica Kingsley Publications.
Gutstein, S.E., and R. Sheely.2002 (b). Relationship Development Intervention With Older
Children, Adolescents and Adults: Social and Emotional Development Activities for Asperger
Syndrome, Autism, PPD and NLD. London, UK: Jessica Kingsley Publications.
Learning to Speak/Zelazo Program
Zelazo, P.R. 1984. Learning to Speak: A Manual for Parents. Hillsdale, NJ: Lawrence Erlbaum
Associates, Inc.
Zelazo, P. R. 1997. Infant-Toddler Information Processing Treatment of Children with Pervasive
Developmental Disorder and Autism: Part II. Infants and Young Children10(2):1-13
References
479
Biomedical Therapies
Diet/Nutrition Therapy (Gluten and Casein-Free Diet)
Adams, L., and S. Conn. 1997. Nutrition and Its Relationship to Autism. Focus on Autism and
Other Developmental Disabilities 12(1):3-58.
Arnold,G.L.2003.PlasmaAminoAcidsProlesinChildrenWithAutism:PotentialRiskof
NutritionalDeciencies.Journal of Autism and Developmental Disroders 33(4):449-454.
Arnold,G.L.,S.L.Hyman,andR.A.Mooney.1998.AminoAcidProlesinAutism.American
Journal of Human Genetics(63):A262.
Barrett, S. 1985. Commercial Hair Analysis Science or Scam? Journal of the American Medical
Association 254(8):1041-1045.
Bidet, B., M. Leboyer, B. Descours, and M.P. Bouvard. 1993. Allergic Sensitization in Infantile
Autism. Journal of Autism and Developmental Disorders 23(2):419-420.
Bird, B. L., D.C. Russo, and M.F. Cataldo. 1977. Considerations in the Analysis and Treatment
of Dietary Effects on Behavior: A Case Study. Journal of Autism Child Schizophrenia 7(4):
373-382.
Birtwistle, S. 2000. Autism and a Gluten and Casein Free Diet. Nutritional Perspectives 23(2):
8-9.
Bliumina, M.G. 1975. A Schizophrenia-like Variant of Phenylketonuria. Zh Nevropatol Psikhiatr
Im S. S. Korsakova 75(10):1525-1529.
Bowers, L. 2002. An Audit of Referrals of Children With Autistic Spectrum Disorder to the
Dietetic Service. Journal of Human Nutritional Dietetics 15: 261-269.
Brudnak, M.A. 2001. Application of Genomeceuticals to the Molecular and Immunological
Aspects of Autism. Medical Hypotheses 57(2):186-191.
Cocchi,R.1996.OnGluten-freeandCasein-freeDietinAutismandtheOpioids’ExcessTheory:
Another Perspective. Italian Journal of Intellective Impairment 9(2):139-152,203-218.
Coleman, M., and J.P. Blass. 1985. Autism and Lactic Acidosis. Journal of Autism and
Developmental Disorders 15: 1-8.
Cook,R.1997. Use of Orthomolecular Therapy for Those WithBehaviouralProblemsand
Mental Handicap: A Review. Complementary Therapies in Medicine 5(4): 228-232.
Cornish, E. 2002. Gluten and Casein Free Diets in Autism: A Study of the Effects on Food
Choice and Nutrition. Journal of Human Nutrition and Dietetics 15(4):261-269.
Cunningham, E. 2001. Question of the Month: Is There Any Research to Support a Gluten and
Casein-free Diet For a Child That is Diagnosed With Autism? Journal of the American Dietetic
Association 101(2):222.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
480
Del Giudice-Asch, G., L. Simon, J. Schmeidler, C. Cunningham-Rundles, and E. Hollander.
1999.BriefReport:APilotOpenClinicalTrialofIntravenousImmunoglobulininChildhood
Autism. Journal of Autism and Developmental Disorders29(2):157-160.
Dennis, M. 1999. Intelligence Patterns Among Children With High-functioning Autism,
Phenylketonuria, and Childhood Head Injury. Journal of Autism and Developmental Disorders
29(1):5-17.
Desorgher,S.2000.Autism--DietaryTreatmentOptions.Positive Health 57: 37-40.
Dietary Supplements Seized After Autism Claims. 2003. FDA Consumer 37(1):4.
Dohan, F.C. 1969. Is Celiac Disease a Clue to the Pathogenesis of Schizophrenia? Mental
Hygiene 53(4):525-529.
Elder,J.H.2002.CurrentTreatmentsinAutism:ExaminingScienticEvidenceandClinical
Implications. Journal of. Neuroscience Nursing 34(2):67-73.
Evangeliou, A., J. Vlachonikolis, H. Mihailidou, M. Spilioti, A. Skarpalezou, N. Makaronas,
et al. 2003. Application of a Ketogenic Diet in Children With Autistic Behavior: Pilot Study.
Journal of Child Neurology 18(2):113-118.
Feingold, B.F. 1979. Dietary Management of Nystagmus. Journal of Neural Transmission
45(2):107-115.
Garvey, J. 2002. Diet In Autism and Associated Disorders. Journal of Family Health Care
12(2):34-38.
Gemmell, M., and C. Chambliss. 1997. Effects of a Gluten-free Diet on Rate of Achievement
in Autistic Children in an Applied Behavioral Analysis Program. Research Report, ED 406761:
12.
Goldberg, E.A. 2004. The Link Between Gastroenterology and Autism. Gastroenterology
Nursing 27(1):16-19.
Guralnick, M. ed. 1999. Clinical practice guideline: Report of the Recommendations. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children (age0-3
years).Albany(NY):NewYorkStateDepartmentofHealth,IV-104.
Hansen,C.2003.AreOurChildrenWhattheyEat?Children’s Voice 12(2):30-34.
Hecht, M.Z. 2003. Dietary Interventions for Children With Autism. Exceptional Parent 33(2):
22-23.
Hein, L.J., and R.L. Simpson. 1998. Interventions for Child ren andYouth withAutism:
Prudent Choices in a World of Exaggerated Claims and Empty Promises. Part 1: Intervention
andTreatmentOptionReview.Focus on Autism and Other Developmental Disabilities13(4):
194-211.
References
481
Horvath, K., J.C. Papadimitriou, A. Rabsztyn, C. Drachenber, and J.T. Tildon. 1999.
Gastrointestinal Abnormalities in Children With Autistic Disorder. Journal of Pediatrics 135:
559-563.
Howlin,P.1997.PrognosisinAutism:DoSpecialistTreatmentsAffectLong-termOutcome?
European Child Adolescent Psychiatry 6(2):55-72.
Hyman, S.L., and S.E. Levy. 2000. Autism Spectrum Disorders: When Traditional Medicine Is
Not Enough. Contemporary Pediatrics 17:101-116.
Isaacson, R.H., M.M. Moran, A. Hall, B.J. Harman, and M.S. Prehosovich. 1996. Autism: A
RetrospectiveOutcomeStudyofNutrientTherapy.Journal of Applied Nutrition48(4):110-
118.
Israngkun, P.P., H.A.L. Newman, S.T. Patel, V.A. Duruibe, and A. Abuissa. 1986. Potential
Biochemical Marks for Infantile Autism. Neurochemical Pathology 5: 51-70.
Kane, P.C., and E. Kane. 1997. Peroxisomal Disturbances in Autistic Spectrum Disorder. Journal
of Orthomolecular Medicine 12: 207-218.
Kane, P. 1997. Ask the Physician. Reversing Autism With Nutrition. Alternative Medicine
Digest (19):36-40,42-44.
Kidd, P.M. 2002. Autism, An Extreme Challenge to Integrative Medicine. Part II: Medical
Managment. Alternative Medicine Review 7(6):472-499.
Kidd, P.M. 2003. An Approach to the Nutritional Management of Autism. Alternative Therapies-
Health and Medicine9(5):22-31.
Kirk, S.A., J.J. McCarthy, and W.D. Kirk. 1961. Illinois Test of Psycholinguistic Abilities (ITPA).
Urbana, IL: University of Illinois Press.
Knivsberg, A.M. 2001. Reports on Dietary Intervention in Autistic Disorders. Nutritional
Neuroscience 4(1):25-37.
Knivsberg, A.M., K.L. Reichelt, T. Hoien, and M. Nodland. 2002. A Randomised, Controlled
Study of Dietary Intervention in Autistic Syndromes. Nutritional Neurosciencen 5(4): 251-
261.
Knivsberg, A.M., K.L. Reichelt, M. Nodland, and T. Hoien. 1995. Autistic Syndromes and Diet:
A Follow-up Study. Scandinavian Journal of Educational Research 39(3):223-236.
Knivsberg, A.M., K. Wiig, G. Lind, M. Nodland, et al. 1990. Dietary Intervention in Autisitic
Syndromes. Brain Dysfunction3(5-6):315-327.
Kozlowski, B.W. 1992. Megavitamin Treatment of Mental Retardation in Children: A Review
of Effects on Behavior and Cognition. Journal of Child and Adolescent Psychopharmacology
2(4):307-320.
Krueger, A. 2003. Alternative Remedies: They Work for You, But Are They Safe for Your Kids?
Alternative Medicine 5: 70-74, 121.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
482
LaPerchia, P. 1987. Behavioral Disorders, Learning Disabilities and Megavitamin Therapy.
Adolescence 22(87):729-738.
Levy, S.E. 2002. Alternative/Complementary Approaches to Treatment of Children With Autistic
Spectrum Disorders. Infants and Young Children 14(3):33-42.
Lovaas,O.I. 1979. Contrasting Illnessand Behavioral Models fortheTreatmentof Autistic
Children: A Historical Perspective. Journal of Autism and Developmental Disorders 9(4):
315-323.
Lucarelli,S.,T.Frediani,A.M.Zingoni, F.Ferruzzi,O.Giardini,F.Quintieri,M. Barbato,P.
D’Eufemia, and E. Cardi. 1995. Food Allergy and Infantile Autism. Panminerva-Medica 37(3):
137-141.
McCarthy, D.M., and M. Coleman. 1979. Response of Intestinal Mucosa to Gluten Challenge
in Autistic Subjects. Lancet 27(2)(8148):877-878.
Millward, C. 2004. Gluten and Casein-free Diets for Autistic Spectrum Disorder. Cochrane
Database of Systematic Reviews(2):CD003498.
Neil, K. 2003. The Nutrition Practitioner. Nutritional Support for Children With Autism.
Positive Health 92: 30.
Nickel, R.E. 1996. Controversial Therapies for Young Children With Developmental Disabilities.
Infants and Young Children 8(4):29-40.
O’Banion,D., B.Armstrong, R.A. Cummings, and J.Stange.1978. Disruptive Behavior: A
Dietary Approach. Journal for Autism and Childhood Schizophrenia8(3):325-337.
Parks, S.L. 1983. Psychometric Instruments Available for the Assessment of Autistic Children.
Journal of Autism and Development Disabilities 9: 255- 267.
Pavone, L., A. Fiumara , G. Bottaro, D. Mazzone, and M. Coleman. 1997. Autism and Celiac
Disease: Failure to Validate the Hypothesis That a Link Might Exist. Biological Psychiatry
42(1):72-75.
Pontino, J.L., K. Schaal, and C. Chambliss. 1998. Effects of a Gluten-free Diet on Rate of
Learning in Autistic Children in an Applied Behavioral Analysis Program: Summary Analysis.
Research Report ED 413689: 35.
Position of the American Dietetic Association: Nutrition in Comprehensive Program Planning for
Persons with Developmental Disabilities. 1992. Journal of The American Dietetic Association
92(5):613-615.
Raven, J.C. 1958. Raven Progressive Matrices. London: H.K. Lewis.
Reichelt, K.L. 1991. Gluten-free Diet in Infantile Autism. Comment on E. Sponheim’s
Communication in Tidsskriftet. Tidsskriftfor Norske Laegeforening 111(11):1406.
Reichelt, K.L. 1991. Gluten-free Diet in Infantile Autism. Tidsskriftfor Norske Laegeforening
111(10):1286-1287.
References
483
Reichelt, K.L., H.K. Hamberfer, and G. Saelid. 1981. Biologically Active Peptide Containing
Fractions in Schizophrenia and Childhood Autism. Advances in Biochemical Psychopharmacology
28: 627-643.
Reichelt, K.L., A.M. Knivsberg, G. Lind, and M. Nodland. 1991. Probable Etiology and Possible
Treatment of Childhood Autism. Brain Dysfunction 4(6):308-319.
Reichelt,K.L.,A.M.Knivsberg,M.Nodland,andG. Lind.1994.Nature andConsequences
of Hyperpeptiduria and Bovine Casomorphins Found in Autistic Syndromes. Developmental
Brain Dysfunction 7:71-85.
Reichelt, K.L. and Y. Liu. 1997. Exorphins, Serotonin Uptake Stimulatory Peptides and Autism.
Italian Journal of Intellectual Impairment 10(2):107-114,161-169.
Reichelt, K.L., G. Saelid, T. Lindback, et al. 1986. Childhood Autism: A Complex Disorder.
Biological Psychiatry(21):1279-1290.
Reichelt, K.L., H. Scott, A.M Knivsberg, K. Wiig, G. Lind, and M. Nodland. 1990. Childhood
autism: A group of hyperpeptidergic disorders. Possible etiology and tentative treatment. In: F.
Nyberg, and V. Brandtl, eds., Beta-Casomorphins and Related Peptides. Uppsala: Fyrris Tryck,
163- 173.
Reid, J.S. 2004. Can Enzymes help Your Child With Autism? Exceptional Parent 34(2):25-
27.
Risebro B. 1991. Gluten-free Diet in Infantile Autism. Tidsskriftfor Norske Laegeforening
111(15):1885-1886.
Seroussi, K. 2000. Unraveling the Mystery of Autism and Pervasive Developmental Disorder:
A Mother’s Story of Research and Recovery. New York: Simon and Shuster.
Seroussi,K.2000.WeCuredOurSon’sAutism.Parents 75(2):118-120,123-125.
Smith, T., J., and M. Antlovich. 2000. Parental Perceptions of Supplemental Interventions
Received by Young Children With Autism in Intensive Behavior Analytic Treatment. Behavioral
Interventions 15: 83-97.
Sponheim, E. 1991. Gluten-free Diet in Infantile Autism. A Therapeutic Trial. Tidsskriftfor
Norske Laegeforening 111(6):704-707.
Tafjord, M. 1982. Obevasjon av fornutsetnnninger for lek og aktivitet, observasjonsskjema.
[Observationofprerequisitesforplayand activity:Observationschedule].Oslo:Collegefor
Special Education Training.
Taylor, D. 2000. Essential Fatty Acids, Diet and Developmental Disorders. Positive Health
(52):37-40.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
484
Torisky, D.M., C.V. Torisky, S. Kaplan, and C. Spelcher. 1993. The NAC Pilot Project: A Model
for Nutrition Screening and Intervention for Developmentally Disabled Children with Behavior
Disorders. Journal of Orthomolecular Medicine8(1):25-42.
Whiteley,P.,R.Jacqui,D.Savery,andP.Shatock.1999.AGluten-freeDietasanIntervention
for Autism and Associated Spectrum Disorders: Preliminary Findings. Autism3(1):45-65.
Whiteley, P. 2001. Autism Unravelled Conference: The Biology of Autism Unravelled. Expert
Opinion on Pharmacotherapy 2(7):1191-1193.
Chelation Therapy
Committee on Children With Disabilities. 2001. Technical Report. The Pediatrician’s Role in
the Diagnosis and Management of Autistic Spectrum Disorder in Children. Pediatrics 107(5):
1-18.
Gentile, P.S., M.J. Trentalange, W. Zamichek, and M. Coleman. 1983. Brief Report: Trace
Elements in the Hair of Autistic and Control Children. Journal of Autism and Developmental
Disorders13(2):205-206.
Hallaway, N., and Z. Strauts. 1995. Turning Lead into Gold: How Heavy Metal Poisoning Can
Affect Your Child and How to Prevent and Treat It. Vancouver, BC: New Star Books.
Heath, A. 1979. Psychiatric Drug Treatment in Children. Journal of the Maine Medical
Association 70(5):181-189.
Hurd, L. 2002. PCA-Rx: Restoring Health and Detoxifying Your Body. Total Health Magazine
24(4):38-40.
Kidd, P.M., 2002. Autism, An Extreme Challenge to Integrative Medicine. Part II: Medical
Management. Alternative Medicine Review, 7(6):472-499.
Kimhi, R, Y, Barak, T. Schlezinger, P. Sirota, and A. Elizur. 1999. Vanadium Concentrations in
Autistic Subjects. New Trends in Experimental and Clinical Psychiatry 15(4):205-207.
Lane, W.G. 2001. Screening for Elevated Blood Lead Levels in Children. American Journal
of Preventative Medicine 20(1):78-82,www.acpm.org/pol_practice.htm#several(accessedFeb.
16,2006).
Lelord, G., J.P. Muh, C. Barthelemy, and J. Martineau. 1981, Effects of Pyridoxine and
MagnesiumonAutisticSymptoms--InitialObservations. Journal of Autism and Developmental
Disorders 11(2):219-230.
Levy, S.E. 2002. Alternative/Complementary Approaches to Treatment of Children With Autistic
Spectrum Disorders. Infants and Young Children 14(3):33-42.
Massaro ,T.F., D.J. Raiten, and C.H. Zuckerman. 1983. Trace Element Concentrations and
Behavior: Clinical Utility in the Assessment of Developmental Disabilities. Topics in Early
Childhood Special Education 3(2):55-61.
References
485
PortermC.2003.HeavyMetalToxicityandMercuryDetoxication:TheSecretLifeofMercury.
Informed Choice 1(2):18-22.
Raiten, D.J., T.F. Massaro, and C. Zuckerman. 1984. Vitamin and Trace Element Assessment
of Autistic and Learning Disabled Children. Nutrition and Development Disabilities 2: 9-17.
Rimland, B. 1988. Controversies in the Treatment of Autistic Children; Vitamin and Drug Therapy.
Journal of Child Neurology 3: S68-72.
Rimland, B., and G.E. Larson. 1983. Hair Mineral Analysis and Behavior: An Analysis of 51
Studies. Journal of Learning Disabilities 16(5):279-285.
Shannon,M.2003.Children’sEnvironmentalHealth:OneYearInAPediatricEnvironmental
Health Specialty Unit. Ambulatory Pediatrics 3(1):53-56.
Shearer, T.R., K. Larson, J. Neuschwander, and B. Gedney. 1982. Minerals in the Hair and
Nutrient Intake of Autistic Children. Journal of Autism and Developmental Disorders12(1):
25-34.
Sohler,A.,M.Kruesi,andC.C.Pfeiffer.1977.BloodLeadLevelsinPsychiatricOutpatients
Reduced by Zinc and Vitamin C. Journal of Orthomolecular Psychiatry6(3):272-276.
Tolbert, L, T. Haigler, M.M. Waits, and T. Dennis. 1993. Brief Report: Lack of Response in an
Autistic Population to a Low Dose Clinical Trial of Pyridozine Plus Magnesium. Journal of
Autism and Developmental Disorders 23(1):193-199.
Wecker, L., S.B. Miller, S.R. Cochran, and D.L. Dugger. 1985. Trace Element Concentrations
in Hair From Autistic Children. Journal of Mental Deciency Research29(1):15-22.
Yung, C.Y. 1984. A Synopsis on Metals in Medicine and Psychiatry. Pharmacology, Biochemistry
and Behavior21(1):41-47.
Intervenous Immunoglobulin Therapy
AAP Policy Statement. 2005. Counseling Families Who Choose Complementary and Alternative
Medicare for Their Child With Chronic Illness or Disability. Pediatrics 107(3):598-601,http.//
aappolicy/aappublications.org,(accessedaug.17,2005).
Bristol-Powers, M. 2001. The etiology of autism and NICHD research. National Institute of
Child Health and Human Development. Washington, DC: National Academy of Sciences.
DelGiudice-Asch, G., L. Simon, J. Schmeidler, C. Cunningham-Rundles, and E. Hollander. 1999.
BriefReport:APilotOpenClinicalTrialofIntravenousImmunoglobulininChildhoodAutism.
Journal of Autism and Developmental Disorders 29(2):157-160.
Gupta, S. 1999. Treatment of Children With Autism With Intravenous Immunoglobulin [letter;
comment]. Journal of Child Neurology 14(3):203-205.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
486
Gupta, S., S. Aggarwal, and C. Heads. 1996. Dysregulated Immune System in Children With
Autism:BenecialEffectsofIntravenousImmuneGlobulinonAutisticCharacteristics.Journal
of Autism and Developmental Disorders 26(4):439-452.
Guralnick, M., ed., 1999. Clinical Practice Guideline: Report of the Recommendations. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children(age0-3
years).Albany(NY):NewYorkStateDepartmentofHealth,IV-91.
Hyman, S., and S. Lery. 2000. Autism Spectrum Disorders: When Traditional Medicine is Not
Enough. Contemporary Pediatrics 10:101.
Piloplys, A.V. 1998. Intravenous Immunoglobulin Treatment of Children With Autism [see
comments]. Journal of Child Neurology13(2):79-82.
Piloplys, A.V. 1999. Response to Letter by Dr. Gupta Concerning The Treatment of Autistic
Children With Intravenous Immunoglobulin. Journal of Child Neurology 14(3):203-205.
Singh, V.K., H.H. Fudenberg, D. Emerson, and M. Coleman. 1998. Immunodiagnosis and
Immuotherapy in Autistic Children. Annual. New.York Academy of Science 540: 602-604.
Secretin
Carey, T., K. Ratliff-Schaub, J. Funk, C. Weinle, M. Myers, and J. Jenks. 2002. Double-Blind
Placebo-Controlled Trial of Secretin: Effects on Aberrant Behavior in Children With Autism.
Journal of Autism and Developmental Disorders 32(30):161-167.
Chez, M.G., and C.P. Buchanan. 2000. Reply to B. Rimland’s “Comments on Secretin and
Autism:ATwo-PartClinicalInvestigation.”Journal of Autism and Developmental Disorders
30(2).
Chez,M.G., C.P.Buchanan,B.T.Bagan,M.S.Hammer,K.S.McCarthy,I.Ovrutskaya, C.V.
Nowinski, and Z.S. Cohen. 2000. Secretin and Autism: A Two-part Clinical Investigation.
Journal of Autism and Developmental Disorders30(2):87-94.
Committee on Children With Disabilities, Technical Report. 2001. The Pediatrician’s Role in
the Diagnosis and Management of Autistic Spectrum Disorder in Children. Pediatrics 107(5):
1-18.
Coniglio,S.J.,J.D.Lewis,C.Lang,T.G.Burns,R.Subhani-Siddique,A.Weintraub,H.Schub,
and E.W. Holden. 2001. A Randomized, Double-blind, Placebo-controlled Trial of Single-dose
Intravenous Secretin as Treatment for Children With Autism. Journal of Pediatrics 138(5):
649-655.
Coplan, J., M.C. Souders, A.E. Mulberg, J.K. Belchic, J. Wray, A.F. Jawad, P.R. Gallagher, R.
Mitchell, M. Gerdes, and S.E. Levy. 2003. Children With Autistic Spectrum Disorders. II: Parents
Are Unable to Distinguish Secretin from Placebo Under Double-blind Conditions. Archives of
Disease in Childhood 88(8):737-739.
References
487
.
Corbett, B., K. Khan, D. Czapansky-Beilman, N. Brady, P. Dropik, D.Z. Goldman, K. Delany,
H. Sharp, I. Mueller, E. Shapiro, and R. Ziegler. 2001. A Double-blind, Placebo-controlled
Crossover Study Investigating the Effect of Pocine Secretin in Children With Autism. Clinical
Pediatrics 40(6):327-331.
Dunn-Geier,J.,H.H.Ho,E.Auersperg,D.Doyle,L.Eaves,C.Matsuba,E.Orrbine,B.Pham,
and S. Whiting. 2000. Effect of Secretin on Children With Autism: A Randomized Controlled
Trial. Developmental Medicine and Child Neurology 42(12):796-802.
Guralnick, M., ed., 1999. Clinical Practice Guideline: Report of the Recommendations. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children(age0-3
years).Albany(NY):NewYorkStateDepartmentofHealth,IV-87.
Herlihy,W.C.2000.Secretin:CureorSnakeOilforAutismintheNewMillennium?(response)
[letter: comment]. Journal of Pediatric Gastroenterology and Nutritition 30(2):112-113;
discussion 113-114.
Honomichl, R.D., B.L. Goodlin-Jones, M.M. Burnham, R.L. Hanse, and T.F. Anders. 2002.
Secretin and Sleep in Children With Autism. Child Psychatry and Human Development 33(2):
107-123.
Horvath, K., G. Stefanatos, K.N. Sokolski, R. Wachtel, L. Nabors, and J.T. Tildon. 1998. Improved
Social and Language Skills After Secretin Administration in Patients With Autistic Spectrum
Disorders. Journal of the Association for Academic Minority Physicians 9(1):9-15.
Jun, S.S., P.C.H. Kao, and Y.C. Lee. 2000. Double Blind Crossover Study of Secretin/Secrepan
Treatment for Children With Autistic Symptoms. Tzu Chi Medical Journal 12(3):173-181.
Kern,J.K., S.VanMiller,P.A.Evans,and M.H.Trivedi.2002. EfcacyofPorcine Secretin
in Children With Autism and Pervasive Developmental Disorder. Journal of Autism and
Developmental Disorders 32(3):153-160.
Levy, S.E., M.C. Souders, J. Wray, A.F. Jawad, P.R. Gallagher, J. Coplan, J.K. Belchic, M.
Gerdes, R. Michell, and A.E. Mulberg. 2003. Children With Autistic Spectrum Disorders. I:
Comparison of Placebo and Single Dose of Human Synthetic Secretin. Archives of Disease in
Childhood 88(8):731-736.
Lonsdale, D., and R.J. Schamberger. 2000. A Clinical Study of Secretin in Autism and Pervasive
Developmental Delay. Journal of Nutritional and Environmental Medicicne 10(4):271-280.
Molloy, C.A., P. Manning-Courtney, S. Swayne, J. Bean, J.M. Brown, D.S. Murray, A.M.
Kinsman,M. Brasington, and C.D.Ulrich. 2002. LackofBenet of Intravenous Synthetic
Human Secretin in the Treatment of Autism. Journal of Autism and Developmental Disorders
32(6):545-551.
Owley,T.,W.McMahon,E.H.Cook,T.Laulhere,M.South,L.Z.Mays,E.S.Shernoff,I.Lainhart,
C.B.Modahl,C.Corsello,S.Ozonoff,S.Risi,C.Lord,B.L.Leventhal,andP.A.Filipek.2001.
Multisite, Double-blind, Placebo-Controlled Trial of Porcine Secretin in Autism. Journal of the
American Academy of Child and Adolescent Psychiatry 40(11):1293-1299.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
488
Policy Statement. 2005. American Academy of Child and Adolescent Psychiatry, www.aacap.
org/publications/policy/ps39.htm#top,(accessedAug.16,2005).
Posey, D.J., and C.I. McDougle. 2000. The Pharmacotherapy of Target Symptoms Associated
WithAutistic Disorder and Other Pervasive Developmental Disorders. Harvard Review of
Psychiatry 8(2):45-63.
Richman, D. M., R.M. Reese, and D. Daniels. 1999. Use of Evidence-based Practice as a
Method for Evaluating the Effects of Secretin on a Child With Autism. Focus on Autism and
Other Developmental Disabilities14(4):204-211.
Rimland,B.2000.Commentson“SecretinandAutism:ATwo-PartClinicalInvestigation”by
M.G. Chez, et al. Journal of Autism and Developmental Disorders30(2):95.
Roberts,W.,L.Weaver,J.Brian,S.Bryson,S.Emelianova,A.M.Grifths,B.MacKinnon,C.
Yim, J. Wolpin, and G. Koren. 2001. Repeated Doses of Porcine Secretin in the Treatment of
Autism: A Randomized, Placebo-controlled Trial. Pediatrics 107(5):E71.
Robinson, T.W. 2001. Homeophathic Secretin in Autism: A Clinical Pilot Study. The British
Homeopathic Journal 90(2):86-91.
Sandler,A.D.,K.A.Sutton,J.DeWeese,M.A.Girardi,V.Sheppard,andJ.W.Bodsh.1999.
LackofBenetofaSingleDoseofSyntheticHumanSecretinintheTreatmentofAutismand
Pervasive Developmental Disorder. New England Journal of Medicine341(24):1801-1806.
Sponheim, E., G. Oftedal, and S.B. Helverschou. 2002. Multiple Doses of Secretin in the
Treatment of Autism: A Controlled Study. Acta Paediatrica 91(5):540-545.
Sturmey, P. 2005. Secretin is an Ineffective Treatment for Pervasive Developmental Disabilities:
A Review of 15 Double-blind Randomized Controlled Trials. Research of Developmental
Disabilities 26(1):87-97.
Unis,A.S.,J.A.Munson,S.J.Rogers,E.Goldson,J.Osterling,R.Gabriels,R.D.Abbott,and
G. Dawson. 2002. A Randomized, Double-Blind, Placebo-Controlled Trial of Porcine Versus
Synthetic Secretin for Reducing Symptoms of Autism. Journal of the American Academy of
Child and Adolescent Psychiatry 41(11):1315-1321.
Wilienfeld,S.O.2005.ScienticallyUnsupportedandSupportedInterventionsforChildhood
Psychopathology: A summary. Pediatrics5(3):761-764.
Vitamin B6 and Magnesium
Adams, L., and S. Conn. 1997. Nutrition and Its Relationship to Autism. Focus on Autism and
Other Developmental Disabilities 12(1):53-58.
Barthelemy, C. 1983. Value of Behavior Scales and Urinary Homovanillic Acid Determinations
in Monitoring the Combined Treatment With Vitamin B6 and Magnesium of Children Displaying
Autistic Behavior. Neuropsychiatrie de l’ Enfance et de Adolescence 31(5-6):289-301.
References
489
Barthelemy, C., B. Garreau, N. Bruneau, J. Martineau, J. Jouve, S. Roux, and G. Lelord. 1998.
BiologicalandBehaviouralEffectsofMagnesium+VtaminB6,FolatesandFenuraminein
Autistic Children. In: L. Wing, ed., Aspects of Autism; Biological Research. Gaskell Psychiatry
Series, College of Psychiatrists, 59-73.
Barthelemy, C., B. Garreau, I. Leddet, D. Ernoug, J.P. Muh, and G. Lelord. 1981. Behavioral
andBiologicalEffectsofOralMagnesium,VitaminB6andCombinedMagnesium-Vitamin
B6 Administration in Autistic Children. Magnesium - Bulletin 2: 150-153.
Barthelemy, C., B. Garreau, I. Leddet, D. Sauvage, J. Domenech, J.P. Muh, and G. Lelord. 1980.
Biologicaland Clinical Effectsof OralMagnesium andAssociated Magnesium-VitaminB6
AdministrationonCertainDisordersObservedinInfantileAutism(author’stransl).Therapie
35(5):627-632.
Campbell, M., and M. Palij. 1985. Behavioral and Cognitive Measures Used in
Psychopharmacologic Studies of Infantile Autism. Psychopharmacology Bulletin 21: 1047-
1053.
Clark, J.H. 1993. Symptomatic VitaminAand D Deciencies in an Eight-Year-OldWith
Autism...IntakeConsistingofOnlyFrenchFriedPotatoesandWaterforSeveralYears.Journal
of Parenteral and Enteral Nutrition 17(3):284-286.
Committee on Children with Disabilities. 2001. Technical Report: The Pediatrician’s Role in
the Diagnosis and Management of Autism Spectrum Disorders in Children. Pediatrics107(5):
e85.
DiLalla, D.L., and S.J. Rogers. 1994. Domains of the Childhood Autism Rating Scale: Relevance
for Diagnosis and Treatment. Journal of Autism and Developmental Disorders 2: 115-128.
Dolske, M.C., J. Spollen, S. McKay, E. Lancashire, et al. 1993. A Preliminary Trial of Ascorbic
Acid as Supplemental Therapy for Autism. Progress in Neuro Psychopharmacology and
Biological Psychiatry 17(5):765-774.
Findling, R.L., K. Maxwell, L. Scotese-Wojtila, J. Huan, T. Yamashita, and M. Wiznitzer. 1997.
High-Dose Pyridoxine and Magnesium Administration in Children With Autistic Disorder: An
Absence of Salutary Effects in a Double-Blind, Placebo-Controlled Study. Journal of Autism
and Developmental Disorders 27(4):467-478.
Goyette, C.H., C.K. Conners, and R.F. Ulrich. 1978. Normative Data on Revised Conners Parent
and Teacher Rating Scales. Journal of Abnormal Child Psychology 6: 221-236.
Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendations. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children (0-3years).
Albany(NY):NewYorkStateDepartmentofHealth,IV-99.
Insel,T.R.,D.L.Murphy,R.M.Cohen,I.Alterman,C.Kilts,andM.Linnoila.1983.Obsessive-
compulsive Disorder: A Double-Blind Trial of Clomipramine and Clorgyline. Archives of General
Psychiatry 4: 605-612.
Jonas, C., T. Etienne, C. Barthelemy, and J. Jouve. 1984. Clinical and Biochemical Value of
Magnesium+VitaminB6CombinationintheTreatmentofResidualAutisminAdults.Therapie
39(6):661-669.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
490
Kleijnen, J., and P. Knipschild. 1991. Niacin and Vitamin B6 in Mental Functioning: A Review
of Controlled Trials in Humans. Biological Psychiatry 29: 931-941.
LaPerchia, P. 1987. Behavioral Disorders, Learning Disabilities and Megavitamin Therapy.
Adolescence 22(87):729-738.
Lelord, G., E. Callaway, and J.P. Muh. 1982. Clinical and Biological Effect of High Doses of
Vitamin B6 and Magnesium on Autistic Children. Acta Vitaminologica et Enzymologica4(1-
2):27-44.
Lelord, G., E. Dallawy, J.P. Mu, J.C. Arlot, D. Sauvage, B. Garreau, and J. Domenech. 1978.
ModicationsinUrinaryHomovanillicAcidAfterIngestionofVitaminB6;FunctionalStudy
inAutisticChildren(author’stransl).Revista Neurologica (Paris) 134(12):797-801.
Lelord, G., J.P. Muh, C. Barthelemy, J. Martineau, B. Garreau, and E. Callaway. 1981. Effects
ofPyridoxineandMagnesiumonAutisticSymptoms-InitialObservations.Journal of Autism
and Developmental Disorders 11(2):219-230.
Lerner, B., C. Miodownik, A. Kaptsan, H. Cohen, U Loewenthal, and M. Kotler. 2002. Vitamin
B6 as Add-on Treatment in Chronic Schizophrenic and Schizoaffective Patients: A Double-Blind,
Placebo-Controlled Study. Journal of Clinical Psychiatry 63(1):54-58.
Martineau,J., C. Barthelemy,C.Cheliakine, and G. Lelord.1988. BriefReport:An Open
Middle-Term Study of Combined Vitamin B6-Magnesium in a Subgroup of Autistic Children
Selected on Their Sensitivity to This Treatment. Journal of Autism and Developmental Disorders
18(3):435-447.
Martineau, J., C. Barthelemy, B. Garreau, and G. Lelord. 1985. Vitamin B6, Magnesium and
Combined B6-MG: Therapeutic Effects in Childhood Autism. Biological Psychiatry 20(5):
467-478.
Martineau, J., C. Barthelemy, and G. Lelord. 1986. Long-Term Effects of Combined Vitamin
B6-Magnesium Administration in an Autistic Child. Biological Psychiatry21(5-6):511-518.
Martineau, J., C. Barthelemy, S. Rux, and B. Gareau. 1989. Electrophysiological Effects of
FenuramineorCombinedVitaminB6andMagnesiumonChildrenWithAutisticBehaviour.
Development of Medicine and Child Neurology31(6):721-727.
Martineau, J., B. Garreau, C. Barthelemy, E. Callaway, and G. Lelord. 1981. Effects of Vitamin
B6 on Averaged Evoked Potentials in Infantile Autism. Biological Psychiatry16(7):627-641.
Menage,P.,G.Thibault,C.Berthelemy,andG.Lelord.1992.CD4+CD45RA+TLymphocyte
DeciencyinAutisticChildren:EffectofaPyridoxine-MagnesiumTreatment.Brain Dysfunction
5(5-6):326-333.
Moreno, H. 1992. Clinical Heterogeneity of the Autistic Syndrome: A Study of 60 Families.
Invesitigacion Clinice 33(1):13-31.
Nye C. 2005. Combined Vitamin B6-Magnesium Treatment in Autism Spectrum Disorders.
The Cochrane Database of Systematic Reviews Issue 2, Art. No. CD 003497.
References
491
Overall,J.E.,andM.Campbell.1988.BehavioralAssessmentofPsychopathologyinChildren:
Infantile Autism. Journal of Clinical Psychology 44: 708-716.
Page, T. 2000. Metabolic Approaches to the Treatment of Autism Spectrum Disorders. Journal
of Autism and Developmental Disorders 30(5):463-469.
Pheiffer,S.I.,J.Norton,L.Nelson,andS.Shott.1995.EfcacyofVitaminB6andMagnesium
in the Treatment of Autism: A Methodology review and Summary of outcomes. Journal of
Autism and Developmental Disorders25(5):481-493.
Rimland,B.1974.AnOrthomolecularStudyofPsychoticChildren.Child Behavior Research
3(4):371-377.
Rimland, B. 1988. Controversies in the Treatment of Autistic Children: Vitamin and Drug
Therapy. Journal of Child Neurology3(Suppl):S68-72.
Rimland, B. 2005. Dimethylglycine for Autism. www.autismwebsite.com/ari/newsletter/dmg2.
htm(accessedDec.28,2006).
Rimland, B. 1996. Form Letter Regarding High Dosage Vitamin B6 and Magnesium Therapy for
Autism and Related Disorders: ARI Publication. SanDiego(CA):AutismResearchInstitute.
Rimland,B.1997.WhatistheRight‘Dosage’forVitaminB6,DMG,andOtherNutrientsUseful
in Autism? Autism Research Review International11(4):3.
Rimland, B. 1998. High Dose Vitamin B6 and Magnesium in Treating Autism: Response to
Study by Findling, et al. Journal of Autism and Developmental Disorders 28(6):581-582.
Rimland, B., and S.M. Baker. 1996. Brief Report: Alternative Approaches to the Development
of Effective Treatments for Autism. Journal of Autism and Developmental Disorders 26(2):
237-240.
Rimland, B., E. Callaway, and P. Dreyfus. 1978. The Effect of High Doses of Vitamin B6 on
Autistic Children: A Double-Blind Crossover Study. American Journal of Psychiatry 135(4):
472-475.
Sankar,D.V.S.1979.PlasmaLevelsofFolates,Riboavin,VitaminB6andAscorbateinSeverely
Disturbed Children. Journal of Autism and Developmental Disorders 9(1):73-83.
Schopler, E., R. Reichler, R. DeVellis, and K. Daly. 1980. TowardObjective Classication
of ChildhoodAutism: Childhood Autism Rating Scale (CARS). Journal of Autism and
Developmental Disorders 1: 91-103.
Szymanski, L., and B.H. King. 1999. Summary of the Practice Parameters for the Assessment
and Treatment of Children, Adolescents and Adults With Mental Retardation and Comorbid
Mental Disorders. Journal of the American Academy of Child and Adolescent Psychiatry 38(1):
1606-1610.
Tolbert, L., T. Haigler, M.M. Waits, and T. Dennis. 1993. Brief Report: Lack of Response in
an Autistic Population to a Low Dose Clinical Trial of Pyridoxine Plus Magnesium. Journal of
Autism and Developmental Disorders23(1):193-199.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
492
Speech and Language Therapies
Fast Forward
Bolton, S. 1998. Auditory Processing and Fast Forward. Curriculum/Technology Quarterly
7(2):2-4.
Earle,J.1998.FastForward:IstheHypeJustied?Technology, Educators, and Children With
Disabilities(TECH-N)NewJerseyCollege9(1):8-9.
Tallal, P., and M. Merzenich. 1997. Fast forward training for children with language learning
problems: Results from a national eld study by 35 independent facilities. Unpublished paper
presented at the annual meeting of the American Speech-Language-Hearing Association. Boston,
MA. 11/21/97.
Tallal, P., and M.L. Rice. 1997. Evaluating New Training Programs for Language Impairment.
American Speech Language Hearing Association 39(3):12-13.
Tallal, P., G. Saunders, S. Miller, W.M. Jenkins, A. Protopapa, and M.M. Merzenich. 1997.
RapidTraining-DrivenImprovementinLanguageAbilityinAutisticandOtherPDDChildren.
Society for Neuroscience, Scientic Learning Corporation 23: 490.
Hannan Method
Bebko, J.M., A. Perry, and S. Bryson. 1996. Multiple Method Validation Study of Facilitated
Communication: II Individual Differences and Subgroup Results. Journal of Autism Development
Disorders26(1):19-42.
Bomba,C., L O’Donnell,C.Markowitz, andD.L.Homes.1996. EvaluatingtheImpact of
Facilitated Communication on the Communicative Competence of Fourteen Students With
Autism. Journal of Autism and Development Disorders26(1):43-58.
Girolametto,L.1997.DevelopmentofaParentReportMeasureforProlingtheConversational
Skills of Preschool Children. American Journal of Speech-Language Pathology6(4):25-27.
Girolametto, L.E. 1988. Improving The Social-Conversational Skills of Developmentally Delayed
Children: An Intervention Study. Journal of Speech and Hearing Disorders 53:156-167.
Girolametto, L., P.S. Pearce, and E. Weitzman. 1996. The Effects of Focused Stimulation for
Promoting Vocabulary in Young Children with Delays: A Pilot Study. Journal of Children’s
Communication Development 17(2):39-49.
Manolson, A. 1992. It takes two to talk.Toronto,ON:HanenCentrePublication.
Tannock, R., L. Girolametto, and L. Siegel. 1992. Language Intervention With Children Who
Have Developmental Delays: Effects of an Interactive Approach. American Journal on Mental
Retardation 97(2):145-160.
References
493
Lindamood-Bell
Koegel,R.L.,K.Dyer,andL.K.Bell.1997.TheInuenceofChild-PreferredActivitiesonAutistic
Children’s Social Behavior. Journal of Applied Behavior Analysis 20(3):243-252.
Lindamood-Bell Learning Processes (n.d).SanLuisObispo,CA.
The SCERTS Model
Prizant, B.M. 1982. Speech-Language pathologists and autistic children: What is our role? Part
I. Assessment and intervention considerations. Part II. Working with parents and professionals.
American Speech Language Hearing Association Journal 24: 463-468; 531-437.
Prizant, B.M., A.M. Wetherby, E. Rubin, and A.C. Laurent. 2003. The SCERTS Model, A
Transactional Family-Centered Approach to Enhancing Communication and Socioemotional
Abilities of Children With Autism Spectrum Disorder. Infants and Young Children16(4):296-
316.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
494
Miscellaneous Therapies
Art Therapy
Bentivegna, S., L. Schwartz, and D. Deschner. 1983. The Use of Art With an Autistic Child in
Residential Care – Case Study. American Journal of Art Therapy 22: 51-56.
Blasco, S.P. 1978. Art Expression as a Guide to Music Therapy – Case Study. American Journal
of Art Therapy 17: 51-56. .
Buck, L., F. Goldstein, and E. Kardeman. 1984. Art as a Means of Interpersonal Communication
in Autistic Young Adults. Journal of Psychology and Christianity 3(3):73-84.
Golomb, C., and J. Schmeling. 1996. Drawing Development in Autistic and Mentally Retarded
Children. Visual Arts Research 22(44):5-18.
Ishii, T., A. Ishii, T. Ishii, and T. Sugiyama. 1996. Drawings by an Autistic Adult Chronicling a
Day in His Childhood. Visual Arts Research 22(44):47-55.
Judge, C., and M. Hilgendorf. 1979. Art and the Mentally Retarded. Australian Journal of
Mental Retardation 5(7):282-288.
Kellman, J. 1996. Making Sense of Seeing: Autism and David Marr. Visual Arts Research
2(44):76-89.
Kellman, J. 1999. Drawing With Peter: Autobiography, Narrative, and the Art of A Child With
Autism. Studies in Art Education 40(3):258-274.
Milbrath, C., and B. Siegel. 1996. Perspective Taking in the Drawings of a Talented Autistic
Child. Visual Arts Research 22(44):56-75.
Quill, K. 1989. Daily Life Therapy: A Japanese Model for Educating Children With Autism.
Journal of Autism and Developmental Disorders 19(4):625-635.
Scanlon, K. 1993. Art therapy with autistic children. Creative Arts Therapy Review 14: 34-42.
Schleien, S.J., T. Mustonen, and J.E. Rynders. 1995. Participation of Children with Autism and
Nondisabled Peers in a Cooperatively Structured Community Art Program. Journal of Autism
and Developmental Disorders25(4):397-412.
Auditory Integration Therapy
Baranek,GraceT.2002.EfcacyofSensoryandMotorInterventionsforChildrenWithAutism.
Journal of Autism and Developmental Disorders32(5):397-422.
Berard, G. 1993. Hearing equals behavior. New Canaan, CT: Keats.
Berkell, D.E., E. S. Malgeri, and M.K. Streit. 1996. Auditory Integration Training for Individuals
With Autism. Education and Training in Mental Retardation and Developmental Disabilities
31(1):66-70.
References
495
Bettison,S. 1996. The Long-TermEffectsofAuditoryTrainingOn ChildrenWithAutism.
Journal of Autism and Developmental Disorders 26(3):361-374.
Brown, M.M. 1999. Auditory Integration Training and Autism: Two Case Studies. British Journal
of Occupational Therapy62(1):13-18.
Committee on Children with Disabilities. 1998. Auditory Integration Training and Facilitated
Communication for Autism. Pediatrics 102(2):431-433.
Dawson, G. 2000. Interventions to Facilitate Auditory, Visual and Motor Integration in Autism:
A Review of the Evidence. Journal of Autism and Developmental Disorders30(5):415-421.
Dempsey, I., and P. Foreman. 2001. A Review of Educational Approaches for Individuals With
Autism. International Journal of Disability, Development and Education 48(1):103-116.
Edelson, S.M. 2003. Response to Goldstein’s Commentary: Interventions to Facilitate Auditory,
Visual,andMotorIntegration:“ShowMeTheData”.Journal of Autism and Developmental
Disorders33(5):551-552.
Edelson, S.M., D. Arin, M. Bauman, S.E. Lukas, J. Rudy, H. Jane, M. Sholar, and B.
Rimland. 1999. Auditory Integration Training: A Double-Blind Study of Behavioral and
Electrophysiological Effects in People with Autism. Focus on Autism and Other Developmental
Disabilities14(2):73-81.
FrankelF.,J.Q. Simmons, M. Fichter,andB.J.Freeman. 1984. Stimulus Overselectivity in
Autistic and Mentally Retarded Children – A Research Note. Journal of Child Psychology and
Psychiatry 25: 147-155.
Gillberg, C., M. Johansson, and S. Steffenburg. 1997. Auditory Integration Training in Children
With Autism. Autism 1(1):97-100.
Gillberg, C., M. Johansson, and S. Steffenbur. 1998. Auditory Integration Training in Children
With Autism: Reply to Rimland and Edelson. Autism2(1):93-94.
Goldstein, H. 2000. Commentary: Interventions To Facilitate Auditory, Visual and Motor
Integration:“Show Me The Data”. Journal of Autism and Developmental Disorders 30(5):
423-425.
Goldstein, H. 2003. Response to Edelson, Rimland, and Grandin’s Commentary. Journal of
Autism and Developmental Disorders, 33(5):553-555.
Guralnick, M. 1999., ed. Clinical Practice Guideline: Report of the Recommendations. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children (age0-3
years),Albany(NY):NewYorkStateDepartmentofHealth,IV-63.
Harris, S.L. 1998. Behavioural and Educational Approaches to the Pervasive Developmental
Disorders. In: Fred R. Volkmar, Autism and Pervasive Developmental Disorders. New York,
NY: Cambridge University Press, 195-208.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
496
Howlin, P. 1997. When IsA Signicant Change Not Signicant? Journal of Autism and
Developmental Disorders27(3):347-348.
Link,H.M.1997.AuditoryIntegrationTraining(AIT):SoundTherapy:CaseStudiesofThree
Boys With Autism Who Received AIT. British Journal of Learning Disabilities25(3):106-
110.
Madell, J.R., and D.E. Rose. 1994. Auditory Integration Training: Face to Face. Journal of
Audiology 3(1):14-18.
Monville, D., and N. Nelson. 1994. Parental perceptions of change following AIT for autism.
Presentation.AmericanSpeech-Language-HearingConference,NewOrleans,MS.
Mudford,O.C.,B.A.Cross,S.Breen,C.Cullen,D.Reeves,J.Gould,andJ.Douglas.2000.
Cockrane Developmental, Psychosocial and Learning Problems Group, Cochrane Complementary
Medicine.Auditory Integration TrainingforChildrenWithAutism: NoBehavioral Benets
Detected. American Journal of Mental Retardation10(2):118-129.
Rimland, B., and S.M. Edleson. 1991. Improving the Auditory Functioning of Autistic Persons: A
Comparison of the Berard Auditory Training Approach With the Tomatis Audio-Psychophonology
Approach, Technical. Report. 111. San Diego: Autism Research Institute.
Rimland, B., and S.M. Edelson. 1994. The Effects of Auditory Integration Training on Autism.
American Journal of Speech Pathology 3: 16-24.
Rimland, B., and S.M. Edelson. 1995. Brief Report: A Pilot Study of Auditory Integration
Training in Autism. Journal of Autism and Developmental Disorders 25(1):62-69.
Rimland, B., and S.M. Edelson. 1998. Auditory Integration Training in Children With Autism:
Commentary. Autism 2(1):91-92.
Schreibman, L. B.S. Kohlenerg, and K.R. Britten. 1986. Differential Responding to Content and
Intonation Components of a Complex Auditory Stimulus by Nonverbal and Echolalic Autistic
Children. Special Issue: Stimulus Control Research and Developmental Disabilities. Analysis
and Intervention in Developmental Disabilitites (2):109-125.
Siegel, B., and B. Zimnitzky. 1998. Assessing ‘Alternative’ Therapies for Communication
Disorders in Children With Autistic Spectrum Disorders: Facilitated Communication and Auditory
Integration Training. Journal of Speech-Language Pathology and Audiology 22(2):61-70.
Sinha,Y.2004.AuditoryIntegrationTrainingandOtherSoundTherapiesforAutism Spectrum
Disorders. Cochrane Database Systematic Review (1):CD003681;OMID:14974028.
Smith, I.M. 1998. Complex Choices: Commentary on Assessing ‘Alternative’ Therapies
for Communication Disorders in Children With Autistic Spectrum Disorders: Failitated
Communication and Auditory Integration Training. Journal of Speech-Language Pathology
and Audiology 22(2):71-73.
Stehli, A. 1991. The sound of a miracle: A child’s triumph over autism. NY: Doubleday.
References
497
Tharpe, A.M. 1999. Auditory Integration Training: The Magical Mystery Cure. Language,
Speech, and Hearing Services in Schools30(4):378-382.
Ziring, P.R., D. Brazdziunas, W.C. Cooley, T.A. Kastner, M.E. Kummer, L.G. De Pijem, R.D.
Quint, E.S. Ruppert, A.D. Sandler, W.C. Anderson, P. Arango, P. Brgan, C. Garner, M. McPherson,
A.M. Yeargin, C. Johnson, L.S.M. Wheeler, and R.C. Wachtel. 1998. Auditory Integration Training
and Facilitated Communication For Autism. Pediatrics102(2):431-433.
Zollweg,W.,D.Palm,andV.Vance.1997.TheEfcacyofAuditoryIntegrationTraining:A
Double Blind Study. American Journal of Audiology6(3):39-47.
Craniosacral Therapy
Barrett, S. 2004. Craniosacral Therapy, http:// www. quackwatch.org,(accessed May 5,
2006).
Continuing Education, Continuing Care. 1999. Palm Beach Gardens, FL: The Upledger
Institute, Inc.
Dolphin Therapy
Hulme,P.1995.HistoricalOverviewofNonstandardTreatment.ED384156, p. 149.
Lukina, L.N. 1999. The Effect of Dolphin-Assisted Therapy Sessions on the Functional Status
of Children with Psychoneurological Disease Symptoms. Psychological Information 25(6):
56-60.
Reppuk, E., and H. Koll. 1989. Structurally Assimilative Therapy for Autistic Disorders.
Frühförderung Interdisziplinär 8(1):33-36.
Servais,V.1999.SomeCommentsOnContextEmbodimentinZootherapy:TheCaseofthe
AutidolnProject.Anthrozoos 12(1):5-15.
Tak-Cho,L.L. Quantec and the Dolphin - Effect, http:// www.mtec-aq.de/autismus_und-
intrumentelle-biokommunikation.asp?lang=eng,(accessedApril21,2005).
Walker, L.A. 1999. These Dolphins Help Families Heal. Parade Magazine Key Largo, FL.
Exercise Therapy
Allison, D.B., V.C. Basile, and R.B. MacDonald. 1991. Brief Report: Comparative Effects of
Antecedent Exercise and Lorazepam in the Aggressive Behavior of an Autistic Man. Journal
of Autism and Developmental Disorders 21(1):89-95.
Celiberti, D.A., et al. 1997. The Differential and Temporal Effects of Antecedent Exercise on
the Self-Stimulatory Behavior of a Child With Autism. Research in Developmental Disabilities
18(2):139-150.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
498
Cowden, J.E., L.K. Sayers, and C.C. Torrey. 1998. Pediatric Adapted Motor Development and
Exercise: An Innovative, Multisystem Approach for Professionals and Families.Springeld,
IL: Charles C. Thomas Publisher, Ltd.
Davidson-Gooch, L. 1980. Autism Reversal: A Method for Reducing Aggressive-Disruptive
Behavior. Behavior Therapist 3(2):21-23.
Elliott,R.O,A.R.Dobbin,G.D.Rose,andH.V.Soper.1994.Vigorous,AerobicExerciseVersus
General Motor Training Activities: Effects on Maladaptive and Stereotypic Behaviors of Adults
With Both Autism and Mental Retardation. Journal of Autism and Developmental Disorders
24(5):565-576.
Farrar-Schneider,D. 1994.Aggression andNoncompliance:Behavior Modication. In J.L.
Matson, Autism in Children and Adults: Etiology, Assessment and Intervention. Belmont, CA:
Brooks/Cole Publishing Co., 181-191.
Gutstein, S.E., and R.K. Sheely. 2002. Relationship Development Intervention With Young
Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PPD
and NLD. Philadelphia, PA: Jessica Kingsley Publishers, Ltd.
Hellings, J.A., J.R. Zarcone, and K. Crandall. 2001. Weight Gain in a Controlled Study of
Risperidone in Children, Adolescents, and Adults with Mental Retardation and Autism. Journal
of Child and Adolescent Psychopharmacology 11(3):229-238.
Hinerman,P.S.,W.R.Jenson,andG.R.Walker.1982.PositivePracticeOvercorrectionCombined
With Additional Procedures to Teach Signed Words to An Autistic Child. Journal of Autism and
Developmental Disorders 12(3):253-263.
Kay, B.R. 1990. Bittersweet Farms, Journal of Autism and Developmental Disorders 20(3):
309-321.
Kern,L,R.L.Koegel,andG.Dunlap.1984.TheInuenceofVigorousVersusMildExercise
on Autistic Stereotyped Behaviors. Journal of Autism and Developmental Disorders 14(1):
57-67.
Kern, L, R.L. Koegel, K. Dyer, P.A. Blew, and L.R. Fenton. 1982. The effects of Physical Exercise
on Self-Stimulation and Appropriate Responding in Autistic Children. Journal of Autism and
Developmental Disorders 12(4):399-419.
Levinson, L.J., and G. Reid. 1993. The Effects of Exercise Intensity on the Stereotypic Behaviors
of Individuals With Autism. Adapted Physical Activity Quarterly 10(3):255-268.
Powers, S., S. Thibadeau, and K. Rose. 1992. Antecedent Exercise and its Effects on Self-
Stimulation. Behavioral Residential Treatment7(1):15-22.
Quill, K., S. Gurry, and A. Larkin. 1989. Daily Life Therapy: A Japanese Model for Educating
Children With Autism. Journal of Autism and Developmental Disorders19(4):625-635.
Rosenthal, M.A., and M. Stella. 1997. Brief Report: The Effects of Exercise on the Self-
Stimulatory Behaviors and Positive Responding of Adolescents With Autism. Journal of Autism
and Developmental Disorders 27(2):193-202.
References
499
Szot, Z. 1997. The Method of Stimulated Serial Repetitions of Gymnastic Exercises in Therapy
of Autistic Children. Journal of Autism and Developmental Disorders 27(3):341-342.
Watters, R.G., and W.E. Watters. 1980. Decreasing Self-Stimulatory Behavior With Physical
Exercise in a Group of Autistic Boys. Journal of Autism and Developmental Disorders10(4):
379-387.
Wunderlich, R.C. 1978. The Phenomenon of Peering. Academic Therapy 14(1):49-54.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
500
Faciliated Communication
Bebko, J.M., A. Perry, and S. Bryson. 1996. Multiple Method Validation Study of Facilitated
Communication: II. Individual Differences and Subgroup Results. Journal of Autism and
Developmental Disorders 26(1):19-42.
Beck, A.R., and C.M. Pirovano. 1996. Facilitated Communicators’ Performance on a Task of
Receptive Language. Journal of Autism and Developmental Disorders 26(5):497-512.
Biklen, D., and D.N. Cardinal. 1997. Contested Words, Contested Science: Unraveling the
Facilitated Communication Controversy. Special Education Series, New York, NY: Teachers
College Press.
Biklen, D., M.W. Morton, D. Gold, C. Berrigan, and S. Swaminathan. 1992. Facilitated
Communication: Implication for Individuals With Autism. Topics in Language Disorders 12(4):
1-28.
Biklen, D., and A. Schubert. 1991. New words: The Communication of Students With Autism.
Remedial and Special Education12(6):46-57.
Bligh, S., and P. Kupperman. 1993. Brief Report: Facilitated Communication Evaluation
Procedure Accepted in a Court Case. Journal of Autism and Developmental Disorders23(3):
553-557.
Bomba,C.,L.O’Donnell,C.Markowitz,andD.L.Homes.1996.EvaluatingtheImpactof
Facilitated Communication on the Communicative Competence of Fourteen Students with
Autism. Journal of Autism and Developmental Disorders 26(1):43-58.
Boomer, L.W., and L. Garrison-Harrell. 1995. Legal Issues Concerning Children With Autism
and Pervasive Developmental Disabilities. Behavioral Disorders 21(1):53-61.
Borthwick, C., and R. Crossley. 1999. Language and Retardation. Psycoloquy(10):38,http://
psycprints.ecs.soton.ac.uk/archive/00000673/html,(accessedMay5,2006).
Braman, B.J., et al. 1995. Facilitated Communication for Children With Autism: An Examination
of Face Validity. Behavioral Disorders 21(1):110-119.
Brandl, C. 2001. The Education of A Teacher. Focus on Autism and Other Developmental
Disabilities 16(1):36-40.
Broderick,A.A.,andC.Kasa-Hendrickson.2001.“SayJustOneWordatFirst”:TheEmergence
of Reliable Speech in a Student Labeled with Autism. Journal of the Association for Persons
with Severe Handicaps 26(1):13-24.
Burgess, C.A., I. Kirsch, H. Shane, K.L. Niederauer, S.M. Graham, and A. Bacon. 1998.
Facilitated Communication as an Ideomotor Reponse. American Psychological Society9(1):
71-74.
Cabay, M. 1994. Brief Report: A Controlled Evaluation of Facilitated Communication Using
Open-endedandFill-inQuestions.Journal of Autism and Developmental Disorders 24: 517-
527.
References
501
Calculator, S.N., and K. Singer. 1992. Preliminary Validation of Facilitated Communication.
Topics in Language Disorders 12(1):9-16.
Cardinal, D.M., D. Hanson, and J. Wakeham. 1996. Investigation of Authorship in Facilitated
Communication. Mental Retardation 34: 231-242.
Clarkson, G. 1994. Creative Music Therapy and Facilitated Communication: New Ways of
Reaching Students With Autism. Preventing School Failure 38(2):31-33.
Cohen, S. 1998. Targeting Autism: What We Know, Don’t Know, and Can Do to Help Young
Children with Autism and Related Disorders. Berkeley, CA: University of California Press.
Committee on Children With Disabilitites. 1998. Auditory Integration Training and Facilitated
Communication for Autism. Pediatrics102(2):431-433.
Crossley, R. 1988. Unexpected communication attainments by persons diagnosed as autistic
and intellectually impaired. Unpublished paper presented at The International Society for
Augmentative and Alternative Communication, Los Angeles, CA.
Crossley, R. 1997. Speechless: Facilitating Communication for People Without Voices. New
York, NY: Signet/Dutton.
Crossley,R., and J.R. Gurney. 1992. Getting the Words Out: Case Studies in Facilitated
Communication Training. Topics in Language Disorders12(4):29-45.
Crossley, R., and A. Macdonald. 1984. Annie’s coming out. New York, NY: Viking Penguin.
Delmolino, L., and R.G. Romanczyk. 1995. Facilitated Communication: A Critical Review.
The Bahavior Therapist 18: 27-30.
Dillon,K.M.,J.E.Fenlason,andD.J.Vogel.1994.BeliefInandUseofaQuestionableTechnique,
Facilitated Communication, for Children With Autism. Psychological Reports 75: 459-464.
Duchan, J.F. 1999. Views of Facilitated Communication. What’s the point? Language, Speech
and Hearing Services in Schools 3: 401-407.
Eberlin, M., G. McConnachie, S. Ibel, and L. Volpe. 1993. Facilitated Communication: A
Failure to Replicate the Phenomenon. Journal of Autism and Developmental Disorders23(3):
507-529.
Edelson, S.M., B. Rimland, C.L. Berger, and D. Billings. 1998. Evaluation of a Mechanical
Hand Support for Facilitated Communication. Journal of Autism and Developmental Disorders
28(2):153-157.
Erevelle, N. 2002. Voices of Silence: Foucault, Disability and the Question of Self-determination.
Studies in Philosophy and Education 21(1):17-35.
Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendation. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children(age0-3
years).Albany(NY):NewYorkStateDepartmentofHealth,IV-65.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
502
Heckler, S. 1994. Facilitated Communication: A Response by Child Protection [see comments].
Child Abuse and Neglect 18: 495-503.
Hirshorn, A., and J. Gregory. 1995. Further Negative Findings on Facilitated Communications.
Psychology in the Schools 32(2):109-113.
Howlin, P. 1998. Facilitated Communication: A Response by Child Protection. Child Abuse
and Neglect 18: 529-530.
Howlin, P., and D.P.H. Jones. 1996. An Assessment Approach to Abuse Allegations Made
Through Facilitated Communication. Child Abuse and Neglect: The International Journal
20(2):103-110.
Hulme,P.1995.HistoricalOverviewofNonstandardTreatments.ED384156.
Jacobson, J.W., J.A. Mulick, and A.A. Schwartz. 1995. A History of Facilitated Communication:
Science, Pseudoscience and Antiscience: Science Working Group on Facilitated Communication.
American Psychologist 50(9):750-765.
Jones, D.P. 1994. Autism, Facilitated Communication and Allegations of Child Abuse and
Neglect. Child Abuse and Neglect 18: 491-493.
Jordon, R. 1997. Education of Children and Young People With Autism. Guides for Special
Education No. 10, UnitedNationsEducational,Scientic,andCulturalOrganization.UNESCO,
Special Needs Education, ED420130.
Katsiyannis, A., and J.W. Maag. 2001. Educational Methodologies: Legal and Practical
Considerations. Preventing School Failure 46(1):31-36.
Kerrin, R.G., J.Y. Murdock, W.R. Sharpton, and N. Jones. 1998. Who’s Doing the Pointing?
Investigating Facilitated Communication in a Classroom Setting with Students with Autism.
Focus on Autism and Other Developmental Disabilities 13(2):73-79.
Kezuka, E. 1998. The Role of Touch in Facilitated Communication. Journal of Autism and
Developmental Disorders 27: 571-593.
Konstantareas, M.M. 1998. Allegations of Sexual Abuse by Nonverbal Autistic People via
Facilitated Communication: Testing of Validity. Child Abuse and Neglect: The International
Journal 22(10):1027-1041.
Margolin, K.N. 1994. How shall facilitated communication be judged? Facilitated communication
and the legal system. In: H.C. Shane, Facilitated Communication: The Clinical and Social
Phenomenon. San Diego, CA: Singular Press, 227-258.
Mesibov, G. 1995. Commentary: Facilitated Communication: A Warning For Pediatric
Psychologists. Journal of Pediatric Psychology 20(1):127-130.
Mirenda, P. 2003. “He’sNot Really a Reader...”: Perspectives on Supporting Literacy
Development in Individuals With Autism. Topics in Language Disorders 23(4):271-282.
References
503
Montee, B.B., and R.G. Miltenberger. 1995. An Experimental Analysis of Facilitated
Communication. Journal of Applied Behavior Analysis28(2):189-200.
Moore, S., B. Donavan, and A. Hudson. 1993. Brief Report: Facilitator-Suggested Conversational
Evaluation of Facilitated Communication. Journal of Autism and Developmental Disorders
23(3):541-553.
Moore, S., B. Donavan, A. Hudson, J. Dykstra, and J. Lawrence. 1993. Brief Report: Evaluation
of Eight Case Studies of Facilitated Communication. Journal of Autism and Developmental
Disorders 23(3):531-538.
Moster, M.P. 2001. Facilitated Communication Since 1995: A Review of Published Studies.
Journal of Autism and Developmental Disorders 31(3):287-313.
Myers, J.E.B. 1994. The Tendency of the Legal System to Distort Scientic and Clinical
Innovations: Facilitated Communication as a Case Study. Child Abuse and Neglect 18(6):
505-513.
Myles, B.S., and R.L. Simpson. 1994. Facilitated Communication With Children Diagnosed as
Autistic in Public School Settings. Psychiatry in the Schools 31: 208-221.
Myles, B.S., and R.L. Simpson. 1996. Impact of Facilitated Communication Combined with
Direct Instruction on Academic Performance of Individuals with Autism. Focus on Autism and
Other Developmental Disabilities 11(1):37-44.
Myles, B.S., R.L. Simpson, and S.M. Smith. 1996. Collateral Behavioral and Social Effects of
Using Facilitated Communication with Individuals with Autism. Focus on Autism and Other
Developmental Disabilities 11(3):163-169,190.
Niemi, J., and E. Kâenâ-Lin. 2002. Grammar and Lexicon in Facilitated Communication: A
Linguistic Authorship Analysis of a Finnish Case. Mental Retardation40(5):347-357.
Ogletree, B.T.,A. Hamtil. 1993. Facilitated Communication: Illustration of a Naturalistic
Validation Method. Focus on Autistic Behavior 8(4):1-10.
Olney,M.F.1995.TimeandTaskSamplingApproachtoValidation:AQuantitativeEvaluation
of Facilitated Communication Using Educational Computer Games, ED390244.
Olney,M.1997. Contested Words, Contested Science: Unraveling the Facilitated Communication
Controversy. In: D. Biklen and D.N. Cardinal, eds. A Controlled Study of Facilitated
Communication Using Computer Games. New York, NY: Teachers College Press, 96-114.
Olney,M.2001.EvidenceofLiteracyinIndividualsLabeledWithMentalRetardation. Disability
Studies Quarterly21(2),http://dsq-sds.org/_articles_pdf/2001/Spring/dsq_2001_Spring_10.pdf,
(accessedDec.28,2006).
Oswald,D.P.1994.FacilitatorInuenceinFacilitatedCommunication.Journal of Behavioral
Education4(2):191-200.
Perry, A., S. Bryson, and J. Bebko. 1993. Multiple Method Validation Study of Facilitated
Communication: Preliminary Group Results. Journal of Developmental Disabilities 2(2):1-19.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
504
Perry,A., S. Bryson, and J. Bebko. 1998. Degree of Facilitator Inuence in Facilitated
Communication as a Function of Facilitator Characteristics, Attitudes and Beliefs. Journal of
Autism and Developmental Disorders 28(1):87-90.
Pontino, J.L., K. Schaal, and C. Chambliss. 1999. Changes in Rate of Learning in Autistic
Children Following 9 Months on a Gluten Free Diet, ED437782.
Regal, R.A., J.E. Rooney, and T. Wandas. 1994. Facilitated Communication: An Experimental
Evaluation. Journal of Autism and Developmental Disorders24(3):345-354.
Rubin, S., D. Biklen, C. Kasa-Hendrickson, P. Kluth, D.N. Cardinal, and A. Broderick. 2001.
Independence, Participation and the Meaning of Intellectual Ability. Disability and Society
16(3):415-429.
Schubert,A. 1997. “I Want To Talk Like Everyone”: On the Use of Multiple Means of
Communication. Mental Retardation 35(5):347-354.
Sheehan, C.M., and R.T. Matuozzi. 1996. Investigation of the Validity of Facilitated
Communication Through the Disclosure of Unknown Information. Mental Retardation 34(2):
94-107.
Siegel, B. 1995. Assessing Allegations of Sexual Molestation Made Through Facilitated
Communication. Journal of Autism and Developmental Disorders 25(3):319-326.
Simon, E.W., D.M. Toll, and P.M. Whitehair. 1994. A Naturalistic Approach to the Validation of
Facilitated Communication. Journal of Autism and Developmental Disorders24(5):647-657.
Simpson, R.L., and B.Smith Myles. 1995. Effectiveness of Facilitated Communication With
Children and Youth With Autism. Journal of Special Education 28(4):424-439.
Simpson, R.L., and B. Smith Myles. 1995. Facilitated Communication and Children With
Disabilities: An Enigma in Search of a Perspective. Focus on Exceptional Children 27(9):
1-16.
Smith, M.D., and R.G. Belcher. 1993. Brief Report: Facilitated Communication With Adults
With Autism. Journal of Autism and Developmental Disorders23(1):175-183.
Smith, M.D., P.J. Haas, and R.G. Belcher. 1994. Facilitated Communication: The Effects of
FacilitatorKnowledgeandLevelofAssistanceonOutput.Journal of Autism and Developmental
Disorders24(3):357-367.
Starr E. 1994. Facilitated Communication: A Response by Child Protection. Child Abuse and
Neglect18(6):515-527.
Szempruch, J., and J.W. Jacobson. 1993. Evaluating Facilitated Communications of People With
Developmental Disabilities. Research in Developmental Disabilities 14: 253-264.
Vás quez, C.A. 199 4. Bri ef Rep ort: A Mul titas k Cont rolle d Eval uation o f Faci litat ed
Communication. Journal of Autism and Developmental Disorders24(3):369-379.
References
505
Vásquez,C.A.1995.FailuretoConrmtheWord-RetrievalProblemHypothesisinFacilitated
Communication. Journal of Autism and Developmental Disorders 25(6):597-610.
Weiss, M.J., S.H. Wagner, and M.L. Bauman. 1996. A Validated Case Study of Facilitated
Communication. Mental Retardation 34(4):220-230.
Wheeler, D.L., J.W. Jacobson, R.A. Paglieri, and A.A. Schwartz. 1993. An Experimental
Assessment of Facilitated Communication. Mental Retardation11(1):49-60.
Williams, D. 1994. In the Real World. Journal of the Association for Persons With Severe
Handicaps 19(3):196-199.
Holding Therapy
Burcard, F. 1988. Follow Up Study of Holding Therapy – Initial Results in 85 Children. Prax
Kindepsychol Kinderpsychiatr37(3):89-98.
Linderman,T.M.,andK.B.Stewart.1999.SensoryIntegrative-basedOccupationalTherapyand
FunctionalOutcomesinYoungChildrenWithPervasiveDevelopmental Disorders:ASingle-
Subject Study. The American Journal of Occupational Therapy 53: 207-213.
Rohmann,U.H.,andH.Hartmann.1985.ModiedHoldingTherapy.ABasicTherapyinthe
Treatment of Autistic Children. Z Kinder Jugendpsychiatr 13(3):182-198.
Stades-Veth, J. 1988. Autism/Broken symbiosis: Persistent avoidance of eye contact with the
mother.Causes,consequences,preventionandcureofautistiformbehaviorinbabiesthrough
mother-child holding. ED 294344.
Welch, M.G. 1983. Autistic children – New hope for a cure. In: E.A. and N. Tinbergen. Autism
Through Mother-Child Holding Therapy. London, UK: George Allen and Unwin Ltd., Appendix
I., 323-335.
Welch, M.G. 1989. Toward Prevention of Developmental Disorders. Pre and Peri Natal
Psychology Journal 3(4):319-328.
Welch, M.G., and P. Chaput. 1988. Mother Child Holding Therapy and Autism. Pennsylvania
Medicine 91(10):33-38.
Music Therapy
Aigen, K. 1995. Cognitive and Affective Processes in Music Therapy With Individuals With
Developmental Delays: A Preliminary Model for Contemporary Nordoff-Robbins Practice.
Music Therapy 13(1):13-45.
Baker, F. 2003. Music Therapy, Sensory Integration and the Autistic Child. Journal of Disability,
Development and Education 50(3):351-353.
Barber,C.F.1999.TheUseofMusicandColourTheoryasaBehaviourModier.British Journal
of Nursing 8(7):443-448.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
506
Benenzon,R.O.1976.MusicTherapyinInfantileAutism.Vie Medicale au Canada Francais
5(12):1257-1264.
Blasco, S. P. 1978. Case Study: Art Expression as a Guide to Music Therapy. American Journal
of Art Therapy17(2):51-56.
Boxill, E. H. 1976. Developing Communication With the Autistic Child Through Music Therapy,
ED149534.
Brauner, A., and F. Brauner. 1976. Musical Aids to Assist Therapy in Mentally Retarded and
Autistic Children. Vie Medicale au Canada Francais 5(10):1024-1026,1037-1039.
Brown, S. 1994. Autism and Music therapy – Is Change Possible, and Why Music? Journal of
British Music Therapy (8):15-25.
Brown,S.2002.“HelloObject!IDestroyedYou”In: L. Bunt, and S. Hoskyns Handbook of
Music Therapy. New York, NY: Brunner-Routledge, 84-96.
Brownell, M.D. 2002. Musically Adapted Social Stories to Modify Behaviors in Students With
Autism: Four Case Studies. Journal of Music Therapy 39(2):117-144.
Brunk, B.K. and K.A. Coleman. 2000. Development of a Special Education Music Therapy
Assessment Process. Music Therapy 18(1):59-68.
Buday, E.M. 1995. The Effects of Signed and Spoken Words Taught with Music on Sign and
Speech Imitation by Children with Autism. Journal of Music Therapy32(3):189-202.
Bunt, Leslie, and S. Hoskyns. 2002. The Handbook of Music Therapy. New York, NY: Brunner-
Routledge.
Burleson, S.J., D.B. Center, and H. Reeves. 1989. The Effect of Background Music on Task
Performance in Psychotic Children. Journal of Music Therapy 26(4):198-205.
Clarkson, G. 1998-1999. The Spiritual Insights of a Guided Imagery and Music Client With
Autism. Journal of the Association for Music and Imagery 6: 87-103.
Darrow, A.A., and T. Armstrong. 1999. Research on Music and Autism: Implications for Music
Educators. Application of Research in Music Education 18(1):15-20.
Decuir, A. 1991. Trends in Music and Family therapy. Arts in Psychotherapy 18(3):195-199.
Dellaton, A.K. 2003. The Use of Music With Chronic Food Refusal: A Case Study. Music
Therapy Perspectives 21(2):105-109.
Dott, L.P. 1995. Aesthetic Listening: Contributions of Dance/Movement Therapy to the Psychic
Understanding of Motor Stereotypes and Distortions in Autism and Psychosis in Childhood and
Adolescence. The Arts in Psychotherapy 22(3):241-247.
Durand,V.M.,andE. Mapstone.1998.Inuenceof “Mood-Inducing”Musicon Challenging
Behavior. American Journal on Mental Retardation 102(4):367-378.
References
507
Edgerton, C.L. 1994. The Effect of Improvisational Music Therapy on the Communicative
Behaviors of Autistic Children. Journal of Music Therapy31(1):31-62.
Griggs-Drane, E.R., and J.J. Wheeler. 1997. The Use of Functional Assessment Procedures and
Individualized Schedules in the Treatment of Autism: Recommendations for Music Therapists.
Music Therapy Perspectives 15(2):87-93.
Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendations. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children (age0-3
years).Albany(NY):NewYorkStateDepartmentofHealth,IV-15to21,IV-24.
Hairston, M.P. 1990. Analyses of Responses of Mentally Retarded Autistic and Mentally
Retarded Nonautistic Children to Art Therapy and Music Therapy. Journal of Music Therapy
27(3):137-150.
Hollander, F.M., and P.D. Juhrs. 1974. Orff-Schulwerk:An Effective Treatment Tool With
Autistic Children, Journal of Music Therapy 11(1):1-12.
Hudson, W.C. 1973. Music: A Physiologic Language. Journal of Music Therapy 10(3):137-
140.
Keats, L. 1995. Doug: The Rhythm in His World. Canadian Journal of Music Therapy 3(1):
53-69.
Koffer-Ullrich, E., 1967. Music Therapy in the Group Therapy Rehabilitation Program.
Psychotherapy and Psychosomatics 15(1):35.
Kostka, M.J. 1993. A Comparison of Selected Behaviors of a Student with Autism in Special
Education and Regular Music Classes. Music Therapy Perspectives 11: 57-60.
Mahlberg, M. 1973. Music Therapy in the Treatment of An Autistic Child. Journal of Music
Therapy 10(4):189-193.
Martin, A.J. 2000. A Research Project, Journal of Music Therapy 9(1):50-59.
Miller,L.K.,andG.Orsmond.1994.AssessingStructureintheMusicalExplorationsofChildren
With Disabilities. Journal of Music Therapy 31(4):248-265.
Monti R. 1985. Music Therapy in a Therapeutic Nursery. Music Therapy 5(1):22-27.
Müller, P., and A. Warwick. 1993. Autistic Children and Music Therapy: The Effects of Maternal
Involvement in Therapy. In: M.H. Heal, and T. Wigram, Music Therapy in Health and Education.
Philadelphia, PA: Jessica Kingsley Publishers, Ltd., 214-234.
Myskja, A. 2000. Examples of the Use of Music in Clinical Medicine. Tidsskr Nor Laegeforen
120(10):1186-1190.
Nelson, D.L., V.G. Anderson, and A.D. Gonzales. 1984. Music Activities as Therapy for Children
WithAutismandOtherPervasiveDevelopmentalDisorders.Journal of Music Therapy 21(3):
100-116.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
508
Orr,T.J.,B.S.Myles,andJ.K.Carlson.1998.TheImpactofRhythmicEntrainmentonaPerson
With Autism. Focus on Autism and Other Developmental Disabilities 13(3):163-166.
Parteli, L. 1995. Aesthetic Listening Contributions of Dance/Movement Therapy to the Psychic
Understanding of Motor Stereotypes and Distortions in Autism and Psychosis in Childhood and
Adolescents. Special Issue: European Consortium for Arts Therapy Education (ECATE). The
Arts in Psychotherapy22(3):241-247.
Rider, M.S., and C.T. Eagle. 1986. Rhythmic Entrainment as a Mechanism for Learning in
Music Therapy. In: J.R. Evan, and M. Clynes, Rhythm in Psychological, Linguistic and Musical
Processes. Springeld,IL:CharlesC.Thomas.,225-248.
Schleien, S.J., T. Mustonen, and J.E. Rynders. 1995. Participation of children with Autism and
Nondisabled peers in a Cooperatively Structured Community Art Program. Journal of Autism
and Developmental Disorders 25(4):397-413.
Skille,O.1989.VibroAccousticTherapy.Music Therapy 8(1):61-77.
Starr, E., and K. Zenker. 1998. Understanding Autism in the Context of Music Therapy: Bridging
Theory and Practice. Canadian Journal of Music Therapy 6(1):1-19.
Stevens, E., and F. Clark. 1969. Music Therapy in the Treatment of Autistic Children. Journal
of Music Therapy 6(4):98-104.
Sydenstricker, T. 1991. Music Therapy: An Alternative for Psychosis Treatment. Jornal Brasileiro
de Psiquiatria 40(10):509-513.
Thaut,M.H.1987.VisualVersusAuditory(Musical)StimulusPreferencesin5.TheEffectof
OccupationalTherapyontheMotorProciencyofChildrenWithMotor/LearningDifculties:
A Pilot StudyAutistic Children: A Pilot Study. Journal of Autism and Developmental Disorders
17(3):425-431.
Toigo, D.A., 1992. Autism: Integrating a Personal Perspective with Music Therapy Practice.
Music Therapy Perspectives, 10: 13 - 20.
Toolan, P.G., and S.Y. Coleman. 1994. Music Therapy; A Description of Process: Engagement
and Avoidance in Five People With Learning Disabilities. Journal of Intellectual Disability
Research 38(4):433-444.
Trevarthen, C. 2002. Autism, Sympathy of Motives and Music Therapy. Enfance 54(1):86-
99.
Turry, A., and D. Marcus. 2003. Using the Nordoff-Robbins Approach to Music Therapy With
AdultsDiagnosed WithAutism. In:DanielJ.Wiener,andLindaK.Oxford, Action Therapy
With Families and Groups: Using Creative Arts Improvisation in Clinical Practice. Washington,
DC: American Psychological Association, 197-228.
Wager, K.M. 2000. The Effects of Music Therapy Upon an Adult Male With Autism and Mental
Retardation: A Four-Year Case Study. Music Therapy 18(2):131-140.
Watson, D. 1979. Music as Reinforcement in Increasing Spontaneous Speech Among Autistic
Children. Missouri Journal of Research in Music Education 4: 8-20.
References
509
Whipple, J. 2004. Music in Intervention for Children and Adolescents With Autism: A Meta-
Analysis. Journal of Music Therapy 41(2):90-106.
Wigram, T. 1995. A Model of Assessment and Differential Diagnosis of Handicap in Children
through the Medium of Music Therapy. In: Tony Wigram, and Bruce Saperston, Art and Science
of Music Therapy: A Handbook. Langhorne, PA: Harwood Academic Publishers/Gordon, 181-
193.
Wigram,T.1995.ThePsychologicalandPhysiologicalEffectsofLowFrequencySoundand
Music. Music Therapy Perspectives 13(1):16-23.
Wigram, T. 2000. A Method of Music Therapy Assessment for the Diagnosis of Autism and
Communications Disorders in Children. Music Therapy Perspectives 18(1):13-22.
Wilson, B.L. 2000. Music Therapy Assessment in School Settings: A Preliminary Investigation.
Journal of Music Therapy 37(2):95-117.
Wimpory, D., P. Chadwick, and S. Nash. 1995. Brief Report: Musical Interaction Therapy for
Children with Autism: An Evaluative Case Study With Two-Year Follow-Up. Journal of Autism
and Developmental Disorders 25(5):541-553.
Wimpory, D.C., and S. Nash, 1999. Musical Interaction Therapy: Therapeutic Play for Children
With Autism. Child Language Teaching and Therapy 15(1):17-28.
Yeaw, J.D.A., 2001. Music Therapy With Children: A Review of Clinical Utility and Application
to Special Populations, ED457635.
Zárate, P. 2001. Application of Music Therapy in Medicine. Revista Medica Chile 129(2):
219-223.
Pet Therapy
Hulme,P.1995.HistoricalOverviewofNonstandardTreatments,ED384156.
Law, S., and S. Scott. 1995. Tips for Practitioners: Pet Care: A Vehicle for Learning. Focus on
Autistic Behavior 10(2):17-18.
Martin, F., and J. Farnum. 2002. Animal-assisted Therapy For Children With P.D.D. Western
Journal of Nursing Research 24(6):657-670.
Redefer, L.A., and J.F. Goodman. 1989. Brief Report: Pet-Facilitated Therapy With Autistic
Children. Journal of Autism and Developmental Disorders19(3):461-467.
Sensory Integration Therapy
Allen,S.,andM.Donald.1995.TheEffectofOccupationalTherapyontheMotorProciency
ofChildrenWithMotor/LearningDifculties:APilotStudy.British Journal of Occupational
Therapy 58(9):385-391.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
510
Arendt, R.E., W.E. MacLean, and A.A. Baumeister. 1988. Critique of Sensory Integration
Therapy and its Application in Mental Retardation. American Journal on Mental Retardation
92:401-411.
Ayers, A.J. 1979. Sensory Integration and The Child. Los Angeles, CA: Western Psychological
Services.
Ayres, A.J., and Z.K. Mailloux. 1983. Possible Pubertal Effect on Therapeutic Gains in an
Autistic Girl. American Journal of Occupational Therapy 37(8):535-540.
Ayres, A.J., and L.S. Tickle. 1980. Hyper-responsivity to Touch and Vestibular Stimuli as a
Predictor of Positive Response to Sensory Integration Procedures by Autistic Children. The
American Journal of Occupational Therapy 34(6):375-381.
Baker, F. 2003. Music Therapy, Sensory Integration and the Autistic Child. International Journal
of Disability, Development and Education 50(3):351-353.
Baranek,G.T.2002.EfcacyofSensoryand MotorInterventions forChildrenWithAutism.
Journal of Autism and Developmental Disorders 32(5):397-422.
Case-Smith, J., and T. Bryan. 1999. The Effects of Occupational TherapyWith Sensory
Integration Emphasis on Preschool-Age Children With Autism. The American Journal of
Occupational Therapy 53(5):489-497.
Cohen, S. 1998. Targeting Autism: What We Know, Don’t Know, and Can Do to Help Young
Children with Autism and Related Disorders. Berkeley, CA: University of California Press.
Cook, D.G. 1990. A Sensory Approach to the Treatment and Management of Children with
Autism. Focus on Autistic Behavior 5(6):1-19.
Dawson, G., and R. Watling. 2000. Interventions to Facilitate Auditory, Visual and Motor
Integration in Autism: A Review of the Evidence. Journal of Autism and Developmental
Disorders 30(5):415-421.
Dempsey, I., and P. Foreman. 2001. A Review of Educational Approaches for Individuals With
Autism. International Journal of Disability, Development and Education48(1):103-116.
Edelson, S.M. 1984. Implications of Sensory Stimulation in Self-Destructive Behavior. American
Journal of Mental Deciency 89(2):140-145.
Edelson, S.M., D. Arin, M. Bauman, S.E. Lukas, J.H. Rudy, M. Sholar, and R. Rimland. 1999.
Auditory Integration Training: A Double-Blind Study of Behavioral and Elecrophysiological
Effects in People With Autism. Focus on Autism and Other Developmental Disabilities,14(2):
73-81.
Edelson, S.M, M. Goldbert-Edelson, D.C.R. Kerr, and T. Grandin. 1999. Behavioral and
Physiological Effects of Deep Pressure on Children With Autism: A Pilot Study Evaluating the
Efcacyof Grandin’sHugMachine. The American Journal of Occupational Therapy 53(2):
145-152.
References
511
Edelson, S., B. Rimland, and T. Grandin. 2003. Commentary: Response to Goldstein’s
Commentary: Interventions to Facilitate Auditory, Visual and Motor Integration: “Show Me the
Data”. Journal of Autism and Developmental Disorders33(5):551-552.
Edelson,S.M.,M.T.Taubman,andO.I.Lovaas.1983.SomeSocialContextsofSelf-Destructive
Behavior. Journal of Abnormal Child Psychology11(2):299-312.
Field, T., D. Lasko, P. Mundy, et al. 1997. Brief Report: Autistic Children’s Attentiveness and
Responsivity Improve After Touch Therapy. Journal of Autism and Developmental Disorders
27: 333-338.
Gillberg, C., M. Johansson, and S. Steffenburg. 1997. Auditory Integration Training in Children
With Autism. Autism1(1):97-100.
Goldstein, H. 2000. Commentary: Interventions to Facilitate auditory, Visual and Motor
Integration:“Showmethedata”.Journal of Autism and Developmental Disorders 30(5):423-
425.
Goldstein, H. 2003. Response to Edelson, Rimland, and Grandin’s Commentary. Journal of
Autism and Developmental Disorders33(5):553-555.
Grandin, T. 1992. Calming Effects of Deep Touch Pressure in Patients with Autistic Disorder,
College Students, and Animals. Journal of Child and Adolescent Psychopharmacology 2(1):
63-72.
Grandin, T. 1996. Brief Report: Response to National Institutes of Health Report. Journal of
Autism and Developmental Disorders 26(2):185-187.
Grimwood, L.M., and E.M. Rutherford.1980. Sensory Integrative Therapy as an Intervention
ProcedureWithGradeOne“atrisk”Readers–aThreeYearStudy.Exceptional Children 27:
52-61.
Guralnick, M., ed. 1999. Clinical Practice Guideline: Report of the Recommendations. Autism/
Pervasive Developmental Disorders, Assessment and Intervention for Young Children (age0-3
years).Albany(NY):NewYorkStateDepartmentofHealth,1V-60.
King, L.J. 1987. A Sensory Integrative Approach to the Education of the Autistic Child.
Occupation Therapy in Health Care4(2):77-85.
Larrington, G.G. 1987. A Sensory Integration Based Program With a Severely Retarded/Autistic
Teenager:AnOccupationTherapyCaseReport.Occupational Therapy in Health Care 4(2):
101-107.
Link,H.M.1997.AuditoryIntegrationTraining(AIT):SoundTherapy?CaseStudiesofThree
Boys with Autism Who Received AIT. British Journal of Learning Disabilities 25(3): 106-
110.
Magrun,W.M.,K.Ottenbacher,S.McCue,andR.Keefe.1981.EffectsofVestibularStimulation
on Spontaneous Use of Verbal Language in Developmentally Delayed Children. American Journal
of Occupational Therapy 35:101-104.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
512
Mason, S.A., and B.A. Iwata. 1990. Artifactual Effets of Sensory-Integrative Therapy on Self-
Injurious Behavior Journal of Applied Behavior Analysis, 23(3):361-370.
McClure, M.K. and M. Holtz-Yotz. 1991. The Effects of Sensory Stimulatory Treatment on an
Autistic Child . The American Journal of Occupational Therapy 45(12):1138-1142.
Norwood, K.W. 1999. Reliability of “the Motor Observations WithRegards to Sensory
Integration”:APilotStudy.British Journal of Occupatioal Therapy 62(2):80-88.
Olson,L.J.2004.UseofWeightedVestsinPediatricOccupationalTherapyPractice.Physical
Occupational Therapy Pediatrics 24(3):45-60.
Ornitz,E.M. 1974.The ModulationofSensory InputandMotor OutputinAutisticChildren.
Journal of Autism and Childhood Schizophrenia 4(3):197-215.
Peterson, T.W. 1986. Recent Studies in Autism: A Review of the Literature. Occupational
Therapy in Mental Health6(4):63-75.
Ramirez, J. 1998. Sensory Integration and Its Effects on Young Children. ED432071.
Ray, T.C., L.J. King, and T. Grandin. 1988. The Effectiveness of Self-Initiated Vestigular
Stimulation in Producing Speech Sounds in an Autistic Child. The Occupational Therapy
Journal of Research8(3):186-190.
Reilly, C., D.L. Nelson, and A.C. Bundy. 1983. Sensori Motor Versus Fine Motor Activities in
Eliciting Vocalizations in Autistic Children. The Occupational Therapy Journal of Research
3(4):200-211.
Rimland, B., and S.M. Edelson. 1995. A Pilot Study of Auditory Integration Training in Autism.
Journal of Autism and Developmental Disorders 25(1):61-70.
Rinner, L. 2002. Sensory Assessment for Children and Youth With Autism Spectrum Disorders.
Assessment for Effective Intervention 27(1-2):37-46.
Slavik, B.A., L.J. Kitsuwa, P.T. Danner, J. Green, and A.J. Ayres. 1984. Vestibular Stimulation
and Eye Contact In Autistic Children. Neuropediatrics 15: 33-36.
Smith,T.1996.AreOtherTreatmentsEffective?In:C.Maurice,andG.Green,Behavioral
Intervention for Young Children With Autism: A Manual for Parents and Professionals. Austin,
TX: Pro-Ed, Inc., 45-99.
Smith, T., D.W. Mruzek, and D. Mozzingo. 2005. Sensory Integrative Therapy. In: J.W. Jacobson,
R.M. Foxx, and J.A. Mulick, Controversial Therapies for Developmental Disabilities. Mahwah,
NJ: Lawrence Erlbaum Associates, 331-347.
Stagnitti, K., P. Raison, and P. Ryan. 1999. Sensory Defensiveness Syndrome: A Paediatric
Perspective and Case Study. Australian Occupational Therapy Journal(46)4:175-187.
Watling,R.,J.Deitz,andE.M.Kanny.1999.CurrentPracticeofOccupationalTherapyfor
Children With Autism. American Journal of Occupational Therapy 53(5):498-505.
References
513
Watson, L.R., G.T. Baranek, and P. DiLavore. 2003. Toddlers With Autism: Developmental
Perspectives. Infants and Young Children 16(3):201-214.
Wokowicz, R., J. Fish, and R. Schaffer. 1977. Sensory Integration With Autistic Children.
Canadian Journal of Occupational Therapy 44(4):171-175.
Zissermann, L. 1992. The Effects of Deep Pressure on Self-Stimulating Behaviors in a Child With
AutismandOtherDisabilities.American Journal of Occupation Therapy 46(6):547-551.
Vision Therapy
Aman, M.G., N.N. Singh, A.W. Steart, and C.J. Field. 1985. The Aberrant Behavioral Checklist:
A Behavior Rating Scale for the Assessment of Treatment Effects. American Journal of Mental
Deciency89(5):485-491.
Bondy, A.S., and L.A. Frost. 1994. The Picture Exchange Communication System. Focus on
Autistic Behavior9(3):1-19
Groffman, S. 1998. The Power of Eye Gaze. Journal of Optometric Vision Development 29(3):
95-97.
Kaplan,M.,D.P.Carmody,andA.Gaydos.1996.PosturalOrientationModicationsinAutism
in Response to Ambient Lenses. Child Psychiatry and Human Development27(2):81-91.
Kaplan, M., S.M. Edelson, and B. Rimland. 1999. Strabismus in Autism Spectrum Disorder.
Focus on Autism and Other Developmental Disabilities 14(2):101-105.
Kaplan, M., S.M. Edelson, and J.L. Seip. 1998. Behavioral Changes in Autistic Individuals as a
Result of Wearing Ambient Transitional Prism Lenses. Child Psychiatry and Human Development
29(1):65-76.
Lovelace, K., H. Rhodes, and C. Chambliss. 2002. Educational Applications of Vision Therapy:
A Pilot Study on Children with Autism. ED458766.
Missouri Autism Resource Guide. 1998. Missouri State Department of Elementary and Secondary
Education,JeffersonCity,MO: ED434466.
Rose, M., and N.G. Torgerson. 1994. A Behavioral Approach to Vision and Autism. Journal of
Optometric Vision Development25(4):269-275.
Schulman,R.L.1994.Optometry’sRoleintheTreatmentofAutism.Journal of Optometric
Vision Development 25: 259-268.
Streff,J.W.1975.Optometric Carefor aChildManifestingQualititesofAutism. Journal of
the American Optometry Association 46(6):592-597.
The Complete Guide to Autism Treatments: Make Sure Your Child Gets What Works!
514
Web Sites
AAP Policy Statement. 2005. Counseling Families Who Choose Complementary and Alternative
Medicare for Their Child With Chronic Illness or Disability. Pediatrics, 107(3):598-601,http.//
aappolicy/aappublications.org(accessedAug.17,2005).
American Academy of Child and Adolescent Psychiatry. http//www.aacap.org/publications/
policy/ps30.htm#TOP(accessedMay5,2006).
American Academy of Pediatrics. 2001. The Pediatricians Role in the Diagnosis and Management
of Autistic Spectrum Disorder in Children. Policy Statement. In Pediatrics 107: 1221-1226,
www.aap.org/policy/re060018.html(accessedDec.28,2006).
AmericanAcademy of Pediatrics, American Association for Pediatric Ophthalmology and
Strabismus, and AmericanAcademy of Ophthalmology. Joint policy statement: Learning
Disabilities, Dyslexia and Vision, www.aao.org/member/policy/diability.cfm (accessed Feb.
16,2006).
American Speech Language Hearing Association. 1994. Facilitated Communication III-113, 12,
http://www.asha.org(accessedOct.3,2005).
Autism-Watch,www.autism-watch.org(accessedApril18,2005).
Barrett,S.2004.Carniosacraltherapy,http://www.quackwatch.org(accessedMay5,2006).
BehavioralAnalyst Certication Board. www.bacb.com/consum_frame.html (accessed June
13,2006).
Benaron, L. 2006. Pivotal Response Intervention Model. Pediatric Development and Behavior,
www.dbpeds.org(accessedMay2,2006).
Cambridge Center for Behavioral Studies (CCBS), http://store.ccbsstore.com/default.asp
(accessedDec.28,2006).
Committee on Children with Disabilities. Technical Report. 2001. The Pediatrican’s Role in the
Diagnosis and Management of Autistic Spectrum Disorder in Children. Pediatrics 107(5):e85,
www.aacap.org/clinical/parameters/summaries/autism.htm(accessedFeb.21,2006).
ConsumerHealthDigest#05-07,www.ncaf.org/digest05/05-07.html(accessedFeb.8,2006).
Gustein, S.E., 2002. The Effectiveness of RDI: Preliminary Evaluation of the Relationship
Development Intervention Program, Houston, TX: The Connections Center, 2-14. http://www.
rdiconnect.com(accessedApril5,2006).
Gutstein, S.E., R. Sheely. Introductory Guide for Parents. Going to the Heart of Autism,
Asperger’s Syndrome and Pervasive Development Disorder, www.rdiconnect.com (accessed
Oct.25,2005).
Lane, W.G. 2002. Screening For Elevated Blood Lead Levels in Children. American Journal
of Preventive Medicine 20(1):78-82,www.acpm.org/pol_practice.htm#several(accessedFeb.
16,2005).
References
515
MaineAdministratorsofServicesforChildrenwithDisabilities(MADSEC).1999.[Reportof
the MADSEC Autism Task Force]. Manchester, ME, www.madsec.org/docs/ATFreport.pdf
(accessedMay20,2006).
NationalCouncilAgainstHealth Fraud. (NCAHF). PolicyStatementon Chelation Therapy,
www.ncahf.org(accessedAug.9,2005).
Commission on educational interventions for children with autism, division of behavioral
and social sciences and education. 2001. Educating Children With Autism, Washington, DC:
NationalAcademy Press, http://books.nap.edu/books/0309072697/html/index.html (accessed
May5,2005).
Public Health Service. 1999. Mental health: A report of the Surgeon General, www.surgeongeneral.
gov/library/mentalhealth/chapter3/sec6.html#autism(accessedJan.11,2006).
Quackwatch,www.quackwatch.org(accessedFeb.16,2005).
ScienticReviewofMentalHealthPractice(SRMHP),www.srmhp.orgarchives/vision-therapy.
html(accessedNov.11,2005).
Tak-Cho,L.L.Quantec and the Dolphin Effect, http://www.mtec-aq.de/autismus_und_
instrumentelle-biokommunikation.asp?lang=eng(accessedApril21,2005).
The American Academy of Child and Adolescent Psychiatry in Their Practice. http://www.aacap.
org/AACAPsearch/SearchResults.cfm(accessedFeb.21,2005).
The American Academy of Child and Adolescent Psychiatry. Policy Statement. 2005. http://
www.aacap.org/publications/policy/ps39.htm#top(accessedAug.16,2005).
The Consolidated Standard of Reporting Trials (CONSORT). www.consort-statement.org/
downloads/download.htm(accessedFeb.13,2005).
TheHanenCentre,www.hanen.org(accessedFeb.21,2005).
TheScienticReviewofMentalHealthPractice,www.srmhp.org/0101/autism.html(accessed
Jan11,2005).
National Institute of Child Health and Human Development, www.nichd.nih.gov/presentations/
etiology1.cfm(accessedDec.28,2006).
Washington State University College of Veterinary Medicines People-Pet Partnership (PPP)
Program,www.vetmed.wsu.edudepts-pppp(accessedFeb.21,2006).
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Index
517
Index
A
ABA See Applied Behavior Analysis
ABC See Aberrant Behavior Checklist
Aberrant Behavior Checklist 199, 256, 260, 351, 357
abstract language 13
academic corruption 385
academic decits 106
academic journal 370, 382-383, 389
academic research 57, 365
academic skills 235
ADOS 155
adult-led 42-43, 159, 328
advancement 13, 77, 363, 364-365
after-only design 392
agency 83, 163, 256-257, 383-386
agenda 95, 383-384
aggression 261-262, 281-282, 415
allegations 297, 300-302, 307
American Academy of Child and Adolescent Psychiatry 22, 74, 179, 182, 184, 202,
204, 212-215, 300, 307
American Academy of Pediatrics 22, 51, 73, 180, 187, 194, 202, 263, 300, 355, 357
American Journal on Mental Retardation 72-73, 76, 78, 265, 325
analog condition 42-43
analog teaching 40, 42-43
Anderson 15, 72
anecdotal evidence 134, 183, 261, 310, 371-373
anecdotal report 18, 93, 144, 177, 310
anecdotes 275, 371-373
Animal-Assisted Therapy 327
Applied Behavior Analysis 7-8, 11, 17, 21, 25-26, 53-54, 58, 65, 67, 70, 76, 92,
129-130, 146, 229, 303, 320, 403, 431
applied science 53, 77
appropriate responding 114-115, 288
Art Therapy 251-255
assessment 30-31, 35-37, 55, 62, 71, 73-74, 94, 101, 111, 122-123, 137, 143-146,
158, 180, 182, 196, 199, 204, 207, 215, 228-229, 235-237, 244, 257266, 305, 307,
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325-326, 347, 351, 355, 385, 426, 436
Association for Science in Autism Treatment 37, 93-94, 140, 187, 212, 215, 263,
266, 301, 307, 315, 348
attachment 95, 309, 312-313, 322
Auditory Integration Training 255, 258-265, 307, 347
Autism Behavioral Checklist 207, 414, 421
Autism Diagnostic Observation Schedule 152, 155, 207
Avery 72
awareness 310, 426
Ayers 335-341, 346-347
B
Baer 15, 73
baseline 37, 48, 84, 145, 245
Behavior Analyst 8, 11, 37, 72, 78
Berringer 105
best practices 18, 21, 62, 92, 154, 179, 263, 301, 412
beta-endorphins 113
Bettleheim 137, 252
between-subject comparison 152
between-subjects design 15, 353, 390, 382-393, 406-407, 422, 429-430
between-subjects analysis 400
between-within subjects design 390, 398, 405
bias 31, 58, 87, 97, 126, 172, 174, 192, 209, 221, 282, 338, 350
biased report 146
Biomedical Therapies 4, 169, 183, 191, 197, 205
biomedical treatment 364
Birnbrauer 72
blind condition 291
blind review 387-388
blind test 90, 221
body movement 30, 36
Bolton 226
Bond 332
Buday 319, 325
Burleson 320, 325
C
CAR scores See Childhood Autism Rating Scale
case studies 54,134,173, 198, 206, 236-237, 265, 290, 304-305, 309, 325, 336,
340-341, 406
Index
519
Cathcart 84-85, 90, 92, 94
causal fallacy 396
cause-effect learning 13
center-based 9, 83-84, 88, 92
chaining 12
child-led 39, 42-43, 48-49, 95, 100, 121, 133, 138-139, 143, 159, 229-231
child-preferred 121-122
Childhood Autism Rating Scale 97, 208
childhood disorders 146, 267
clinic-directed 19
clinical guidelines 110, 331
clinical trials 199, 378, 386
COCHRANE 386
Colorado Health Sciences Center 95
communication 8, 22, 32, 63, 83-84, 87, 94-95, 97, 105, 115, 124, 133, 136-137,
149, 155, 201, 227, 233, 241, 244-245, 247, 251, 266, 268, 289-291, 295-307,
318, 354
communicative intent 138
community based 88
compliant children 162
comprehension 30, 35-36, 68, 223, 235, 260-261, 320, 338
confounding variables 15, 171, 341, 425
confrontation 310
consistency 32, 40, 105, 164, 416
consultant 71, 153, 238, 363
contagions 377
control group 14-16, 21, 28, 31, 36-37, 45, 85, 87, 91, 98, 109, 114, 116-117, 152,
164, 172, 187, 191-192, 201, 209, 221, 224, 231, 256, 258-260, 271, 309, 323,
337-339, 343, 353-354, 390, 392-400, 410-412, 421, 426, 428-430
Controversial Therapies 72, 78, 344, 348
controversy 300, 305, 379
Cook 74, 203, 337, 340-341, 346-347
cost-effective 90, 106
Craniosacral Therapy 267-271
curriculum 12-13, 25-27, 33-34, 70, 74-75, 83-85, 90, 95, 99-100, 104, 106-110, 113,
115-116, 118, 121, 128, 133, 137, 159, 226, 235-236, 242-243
D
D.V. See Dependent Variable
Daily Life Therapy 113-144, 116-119, 288
daily living skills 26, 105, 121
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daily schedules 27, 83
Daly 124, 129-130
DAT See Dolphin-Assisted Therapy
DDDC See Douglass Developmental Disabilities Center
decits 12-13, 25, 62, 89, 91-92, 107, 126, 137-138, 157, 230-231, 235, 237, 245,
265, 268-269, 284, 297, 340
delays 74, 159-161, 163, 228, 233, 281
dependent measure 36, 45, 48, 90, 101, 139-140, 192, 194, 354
dependent variable 16, 30-31, 86-87, 92, 172, 177, 191-193, 198, 206, 208, 211,
253, 262, 268, 321, 337-339, 351, 380-381, 413
destructive behavior 7, 96
Developmental Disabilities 26, 72-76, 78, 106, 111, 129, 181, 203-204, 288-289,
293, 303-304, 325, 344, 347,-348
diagnosis 16, 31, 40, 73, 124, 139, 146, 152, 172, 178, 182, 185-186, 189, 196, 204,
215, 224, 228, 231, 236, 256, 268-269, 293, 297, 310, 325, 350, 403, 413
Diagnostic Statistical Manual 31, 41, 414
diet 108, 169,170-182, 201
DIR (Developmental, Individual Difference, Relationship Model) See Floortime
direct instruction 12, 26-27, 121, 229, 304
discrete trial training 12, 32, 41-42, 68-69, 85-86, 92, 123-124, 424-425
discrimination training 12
disruptive behavior 43, 49, 54, 76
distractor 295
DLT See Daily Living Therapy
Dolphin-Assisted Therapy 273-279
double-blind 155, 178-179, 192, 194, 197-199, 203-204, 206, 214, 260, 270, 347,
350-351
Douglass Developmental Disabilities Center 26, 75
Down Syndrome 293
Drash 64, 79
DSM-IV 139
DTT See Discrete Trial Training
Durand 58, 78, 325
dysfunction 181-182, 214, 312, 335, 337-338, 340, 349, 354
E
early intensive treatment 102
Early Intervention 20, 35, 50, 54, 72-73, 77, 96-97
eclectic approach 126
eclecticism 125, 127
ecological validity 53
Index
521
Edgerton 318, 325-326
editorial board 70, 365, 388
educational system 4, 47, 53, 55, 67, 88, 90, 92, 224, 399
effectiveness 4, 9, 16, 18-19, 41, 54, 76, 90-94, 98, 106-108, 126, 134, 139, 140,
148, 156, 171, 173, 182, 194, 210, 231, 233, 253, 270, 275, 294, 296, 301, 304,
338, 345, 347, 362, 412, 436
efcacy 8, 11, 14, 21-22, 37, 47, 54, 57, 84, 89, 94, 97, 101, 106-107, 114, 116-117,
123, 126-127, 135, 139, 143, 146, 151, 163-165, 171, 173, 178, 186, 195, 203,
228, 231-232, 235, 244, 250, 253, 263, 265, 274, 301, 324, 340, 342, 344, 347,
356, 383, 412, 419, 430-431, 433
ego deciencies 100
Eikeseth 72-73
empirical support 63-64, 137, 242
engineered setting 121
environmental accommodation 83
equivalence 410
ERIC 106, 315, 357, 386, 436
ethical guidelines 11, 57
evaluation 3, 101, 106-107, 117, 155, 164, 173, 207, 209, 223, 232-233, 269, 303-
304, 307, 361, 375, 382, 407
Exercise Therapy 281, 284-288
experimental group 14-16, 85, 87, 101, 117, 173, 259, 343, 352-353, 376, 389-390,
393, 397-400, 408, 410, 420-421
experimental treatment 4, 364, 412
experimenter bias 87, 172, 350, 426
experts 312, 363-365, 369-370, 390
expressive 26, 83, 87
expressive language skills 13, 25, 83
extinction 13, 20, 160, 162
eye/hand integration 83
F
Facilitated Communication 266, 289-290, 295, 297, 299-307
facilitator 227, 288, 291-295, 297-299, 304
falsiability 312
Fast ForWord 219, 221-226
FC See Facilitated Communication
Fenske 28, 74
Finding 303
ne and gross motor skills 90
ne motor 26, 30, 36, 82, 85-87, 299
ne motor writing 36
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Floor-Time 102, 123-124, 126-127, 132, 134-142, 242
Fluency 67-71, 79
folic acid 411
foundation skills 8, 153
functional analysis 84
Functional Behavioral Assessment 55
functional-random assignment 431
funding 15, 163, 201, 383-384, 386, 428
G
gaze 349
gene 371
generalization 20, 41, 50-51, 76, 129, 245, 407, 429
generically trained 88
Giant Steps 105-111
goal-directed 39, 338
goals 7, 26, 59, 83, 99, 121, 133, 136, 241, 244-245, 317
government 8, 21, 33, 35, 50, 57, 89-90, 163-165, 232, 275, 383-386, 412,
418-419, 433
government-funded programs 35
Grandin 339, 341, 346-348
Graupner 19, 73, 78
Greenspan 131, 133-138, 140, 142
gross motor object 30, 36
gross motor skills 85, 90
gross-motor 113
group assignment 87, 410, 421
Guralnick 73, 94, 111, 142, 183, 196, 204, 215, 266, 307, 326, 347
Gurry 123,127, 288
Gutstein 151-153
H
Hairston 320, 325
half-baked treatments 371
hand-apping 328-329
Handleman 29, 74-75, 94, 129
Harris 28-30, 74-75, 94, 128
head tilts 349
head-banging 136
heavy metal 184-189, 374
Higashi 113-114, 116-117, 119
Index
523
high functioning 45, 152, 154
Holding Therapy 309-315
home program 40-41, 92, 102, 230
home-based program 32-33, 84, 94, 222
Howard 16-17, 72
Hoyson 33, 74
Hug Machine 340
Huxley 375-376, 436
hyper-arousal 113
hyperactivity 352
hypersensitive perception 260
hypersensitivity 180, 260
hypotheses 45, 184, 407, 425, 429, 436
hypothesis 97, 116, 187, 252, 260, 305, 339, 342, 350, 368, 377, 381, 419,
426-427, 429
I
I.V. See Independent Variable
IBT See Intensive Behavioral Treatment
IEP See Individualized Education Plan 105, 108
imitation 12, 25, 61, 68, 80, 86, 112, 114, 116, 159, 161-162, 230, 325
inappropriate behavior 22, 96, 116, 284
incidental teaching 32, 121, 123, 125, 129, 130
INclass REActive Language 95
inclusion 19, 53, 57, 126-127
independence 8, 26, 83, 91, 114, 146, 162, 299, 305
independent play 27
independent reviews 21
Independent Variable 253, 321, 323, 337, 380-381, 415, 417, 426
individualized preventative strategies 27
individually designed 19
ineffective treatment 204, 263, 362
initiation 76, 121, 124-125
injurious 96
INREAL See INclass REActive Language
instantiation 409
integration 9, 19, 29, 35, 83, 86-87, 89, 91, 107-108, 110, 121, 242, 252 255, 258-
266, 307, 334, 336-337, 339-347
Intensive Behavioral Treatment 8-9, 11-12, 14, 21, 25, 33, 38, 71-74, 85, 135-136,
145-146, 244
intensive treatment methods 102
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inter-observer reliability 220, 417
Interaction 84-85, 137, 329, 333
interaction 19, 27, 31, 35, 49, 76-77, 83, 107-108, 116, 121-123, 125, 129, 133, 135-
136, 138-139, 143, 153, 155, 227-228, 230, 274, 311, 321, 325, 327-328, 331, 402
interactive experience 133
interactive play 14
International Journal of Mental Health 89
interpersonal development 95
intuition 3, 376
investigations 263, 300
invitational equipment 105
IQ (scores) 15-16, 30, 35-37, 51, 59, 70, 74, 84-85, 87, 90, 92, 97, 114, 139, 152,
155, 162, 187, 194, 224, 245, 256, 258, 298, 340, 355, 390, 393, 398, 403-405,
414, 421, 427
irritability 137, 199-200, 352
J
Jacobs 72, 78, 129-130
Jennett 89, 94
justication 50, 178, 339, 412, 419
K
Kaplan 317, 349-350, 354, 357
Kim 105, 111
Kitahara, Dr. Kiyo 113
Koegel 75-78, 42
L
language 9, 12-14, 16, 25-27, 29-30, 32-33, 35-37, 40-42, 44-48, 51-52, 61-64,
70-71, 74, 76-78, 83, 85, 90, 92, 94-95, 97-98, 103, 105, 108, 115, 121-122, 129,
136-137, 154, 159, 161-162, 164, 192, 194, 203, 217, 219-220, 222-228, 230-233,
235, 237-239, 241, 243-245, 247, 264, 267, 269, 275, 297-300, 303, 305, 307,
317, 320, 325, 338-340
language-delayed 14, 159
Larkin 115, 119, 288
Laski 40, 50, 76
Leaf 22, 74
LEAP Program 27, 30-31, 33-37, 75
Learning Accomplishment Prole 30, 32, 35
learning channels 69
Learning to Speak 167-168, 171, 174
Index
525
Learning to Speak program 159-160, 163-166
Leiter International Performance Scale 257
lenses 349-352, 354-357
lethargy 352
letter recognition 105
level of autism 86, 414-415
licence 245, 365
Lieberman 72
LIPS 256-257
logic 375
Lord 84-85, 94, 206
Lovaas 11, 13-16, 18, 20-22, 40, 64, 72-74, 145-146, 405-406, 431, 436
low intensity experiments 41
M
magnesium 173, 205-207, 209-215, 368
Mahler 95
mainstream setting 56, 89, 126
mainstreaming 33, 56-57
maladaptive behavior 8, 35-36, 122, 139, 230, 322
mand 61, 63-64, 79
manipulation 30, 36, 267
matched pairs assignment 16
Matson 72
maturation 98, 122, 126, 171, 231, 259, 337, 423
Maurice 22, 74
McClannahan 74
McEachin 16, 22, 72-74
McGee 124-125, 130
mean scores 123, 152, 339
MEDLINE 106, 160, 198, 388, 436
melatonin 419-420
mental age 97, 159, 161
Mental Retardation 80-81, 84, 86-87, 137, 223, 241, 273, 296, 301, 313-314, 333
mental retardation 31, 72, 75, 162, 215, 292, 325
mentally retarded 14, 18, 79, 297, 320, 325
Mesibov 89, 94
meta-analysis 317, 407
methodological weaknesses 28, 31
methodology 68, 101, 140, 351
Metz 72-73
motivation 39, 49, 143, 151, 154, 245, 274, 281, 337, 418
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Mulick 58, 72-73, 78, 348
multi-cued instructions 49
Music Therapy 105, 107-108, 110, 317-318, 320-325
N
National Institutes of Health 15, 431
National Research Council 22, 74
naturalistic teaching 40-43, 424
negative nding 303, 368, 409
negative outcome group 28
neurological disorder 50, 89, 311
neurological dysfunction 312
New York Report 21, 92, 110, 212, 344
New York State Department of Health 21, 73, 92, 94, 110-111, 140, 142, 182, 195-
196, 202, 204, 215, 245, 267, 301, 307, 325-326, 332, 343, 347
non-verbal 95, 154, 159, 172
normalization 19
nutritional component 105, 108
O
objective assessment 145
objectives 33, 121
observation 4, 13, 29, 31, 48, 84, 114, 136, 144, 152, 155, 169, 172, 174, 176, 182,
200-201, 207, 211, 215, 258, 260, 273, 275, 294, 311-312, 318-319, 321, 328, 330,
338-339, 342, 367, 371, 376, 426
observational learning 13
Occupational Therapy 104, 107, 265, 346-347
Olgetree 292
Olney 305-306
one-on-one 29, 32, 34, 47, 56, 98, 62, 109, 123, 126, 220, 242, 317, 321, 339
operant conditioning 7, 9
Options 152, 154-156
Options Institute 143- 147, 149
organization 21-22, 37, 65, 67, 83, 93, 102, 127, 148 179, 227, 238, 263, 270, 300,
324, 332, 335, 433
organizational skills 83
Ornitz scale 338
Ozonoff 84-85, 90, 92, 94
P
p value 114, 199, 209, 281-282, 421-422
Index
527
Panerai 87, 94
parent-directed 14, 19, 153
parent-facilitated 133, 143, 151
parent-training 50
parental involvement 88, 144, 229
parental reporting 144, 146, 172-173, 183, 186, 198-199, 256, 259, 309-310, 338,
351, 353, 355, 418
parental withdrawal 137
Partington 61, 63, 78
PBS See Positive Behavioral Support
PCDI See Princeton Child Development Institute
Peabody Picture Vocabulary Test 30, 257
peer interaction 107-108, 115, 122, 153
peer-mediated therapy 327
peer-reviewed 13, 84, 126, 141, 154, 160-161, 198, 221, 223, 235, 237, 255-256,
267, 269, 275, 279, 281, 301, 318, 386-388, 431, 433
peer-reviewed journal 13, 25, 40, 68, 70, 84, 122, 151, 171, 173-174, 180, 183, 186,
218, 235-236, 250, 267, 270, 290, 318, 326, 368, 384, 386-388, 415, 432
penicillin 377
Peptides 414
peptides 169, 177-178, 181, 414
perseverative behavior 138
Pet-Facilitated Therapy 327-329, 332-333
phenomenon 191, 300, 303, 306, 371, 432
physical aversive 20
physical exercise 113, 115-116, 281-282, 284, 288
physical harm 362
physical restraints 20, 405
physically invasive 362
Piaget 95
Pierce 76-77
Pivotal Response Training/Naturalistic Learning Paradigm 39, 40-41, 45-46, 49, 51-
52, 75-76, 123-124, 126-127
placebo 186, 192, 194, 197-199, 203, 206, 209, 214, 224, 256, 343, 416
play 12-13, 25-26, 36, 40-41, 44-47, 52, 76, 95-100, 102, 105, 108, 121, 135-138,
155, 182, 184, 227, 241-242, 244, 269, 292, 312, 319, 325-326, 337-339, 341, 343
Playschool Model 96, 98, 103
Playschool Outreach Project 99
Positive Behavior Support 58, 78
positive outcome 28, 36, 50, 70, 164
positive results 86, 91, 146, 206, 208, 256, 281, 291, 299, 415
positive strategies 27
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Positive Behavioral Support 53-54, 56-57, 77, 242, 245
Post test 109, 209, 220-221, 239, 271, 342, 355
posture 349-350, 354
pre and post treatment 70, 152
pre-test 86, 422-423
pre-academic 13, 26, 84
Precision Teaching 66, 68-69, 79-80
pretend play 44-45, 136, 319, 242
pre-vocational skills 84
Princeton Child Development Institute 25
prism 350-355
problematic behavior 27, 32, 55, 83, 96, 133, 162, 243, 281-282, 322, 352-353
prompting 12, 51, 63, 145, 229, 242, 289
prompting and fading strategies 12
PRT/NLP See Pivotal Response Training/Naturalistic Learning Paradigm
pseudo-science 58, 361, 366-370
pseudo-scientists 403, 408
PSYCHINFO 160, 388
Psychoeducational Prole 84-86
psychometric measures 31, 91, 141, 177, 211, 257, 260
psychometric testing 65, 174, 339
publish or perish 364
published article 143, 255
published research 106
Q
quackery 188, 271, 361, 363, 369, 371, 373, 382, 406, 432, 435
Quackwatch 140, 148, 179, 182, 185, 188-189, 202, 204, 232, 270-271, 300, 307,
312, 315, 330, 344, 348
quasi-random 73, 412, 428
Quill 113, 119, 288
R
random assignment 15, 73, 98, 139, 152, 155, 191, 205, 211, 257, 323, 410-412,
428, 431
randomization 15, 21, 206
randomized trials 52
rate of development 29
rating scale 97, 191, 208, 340, 357, 416
Ray 337, 346
Index
529
RDI See Relationship Development Intervention
receptive instructions 25
receptive language skills 12, 26
recognition 105, 136
recognized experience 8
red ag 137, 297, 311-312, 368-369, 414, 432-434
redirection 13, 20, 96, 115, 124, 292
reinforcement 7, 12-13, 20, 27, 39, 43, 320, 322, 325, 331, 337, 418
reinforcer 43, 316, 320, 330-331
Relationship Development Intervention 151, 157
relevant reinforcer 43
reliability 134, 207, 217, 220, 258, 318
repetition 51, 68-69, 125, 229
replication 11, 13-14, 16, 20-22, 44, 73, 102, 123, 125, 175, 179, 213, 262 354, 361,
368, 406, 411, 429-430
retrospective study 152, 173-174
reviewers 212, 385
reviews 21, 106, 171, 232, 255, 263, 290, 344, 388, 436
reward 12, 27, 39, 46-47, 159-162, 222
rhyming 319
ritualistic 39, 138, 269
Rogers 96-99, 102-103, 203
Rosenthal 281-282, 286, 288, 427, 436
Rost 58, 78
S
s.d. See standard deviation
safeguard 40, 387, 406, 427
Sallows 16, 19, 74, 78
Satcher 22, 73
SCERTS Model 241-247
schedule 26-27, 83-84, 107, 115, 152, 155, 182, 207, 282-283, 285, 353
school program 32-33, 117, 122
school-based 9, 25, 27-28, 33, 36-38, 83, 95, 105, 110, 113, 121
Schopler 92-93, 97, 102, 216
science-based 11, 55-56, 65, 127, 342, 363-364, 387
scientic evidence 3, 18, 140, 147, 202, 262-263, 270, 274, 309, 342-343, 356, 364,
366, 370, 433-434
scientic method 140, 290, 296-297, 300, 343, 361-362, 365-370, 382, 426, 431,
435
scientic research 23, 38, 53, 59, 65, 70, 93, 102, 110, 118, 128, 141, 146, 156, 180,
188, 195, 202, 213, 225, 232, 239, 246, 253, 264, 270, 278, 287, 302, 314, 324,
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332, 344, 356, 363, 371
Scientic Review of Mental Health Practice 37, 75, 355, 357
scientic scrutiny 140, 370
scientic support 135, 180, 245
scientic validity 300
scientically substantiated 116, 149, 171, 338
scientically-supported 370
score 97, 162, 257, 291-292, 318, 319, 343, 352, 396, 398-399, 416, 422, 424
secretin 205-212, 400, 432
segregated 19, 29, 74, 119, 242
seizure 261-262
self-destructive 8, 13
self-esteem 114, 274
self-help skills 12, 83
self-injurious 28, 47, 66, 144, 238, 348, 352, 358, 405
self-injurious behavior 20, 39, 58, 136, 230, 340, 344, 350, 405
self-stimulation 31, 134, 269, 288
self-stimulatory behavior 173-174, 229, 281-286, 288, 328-329, 340, 354, 414-415
sensory approach 336, 346
sensory dysfunction 338, 340
sensory information 335-336
sensory input 335, 339
Sensory Integration Therapy 107, 110, 335-337, 339-345
sensory sensitivity 336, 342, 425
sensory stimulation 99, 336
sensory stimuli 96, 335, 341
shaping 12, 162
Siegel 16, 73, 233, 307
signicance levels 28, 209
signicant change 126, 351
single case study 107
Single Subject Case Design 40, 44, 54, 70, 282, 292, 337, 390, 403, 405-406, 408,
429
Single Subject Research Designs 283
SIT See Sensory Integration Therapy
skill decit 12, 36, 137, 231, 237
Skinner, B.F. 7, 61-62, 78
Smith 14-16, 18, 65, 72-73, 75, 290, 304, 344, 348
sociability 319, 327-329
social behavior 30, 76, 251, 327
social experiences 96
social interaction 27, 35, 83, 121, 123, 125, 133, 135, 138-139, 155, 230, 274, 321,
Index
531
327-328, 331
social language 44
social skills 41, 46, 152
socialization 13, 26, 145
socialization skills 13, 145
societal norm 138
sociodramatic play 40, 76
Son-Rise 143-149
special education 16, 78, 85, 87, 92, 99, 103, 152, 163, 242, 304, 306, 325, 393
speech 14, 31-32, 40-41, 68, 75-76, 78-79, 95, 105, 107, 108, 159, 163-164, 191-
192, 219-220, 222, 224-228, 231-233, 235, 241, 244-245, 247, 265-266, 300, 303,
305, 307, 319-320, 325, 346, 352
speech therapist 32, 68, 191, 319
SSCD See Single Subject Case Design
SSRD See Single Subject Research Design
Stahmer 45, 48, 76-77, 123, 127, 129
stakeholder participation 53
standard deviation 124, 220, 258, 422
standardized measures 70, 208, 339
standardized score 97
stereotypic behavior 116, 282, 284-288
stereotypy 174, 352
stimulus 39, 79, 291, 321, 326, 335
Strain 33, 74-75
structured teaching 12, 42, 83, 85, 126
structured teaching technique 12
Sundberg 61, 63, 78-79
T
Tallal 218, 225-226
tantrum 31, 136, 261-262, 415
target sounds 42
tautology 311
TEACCH 83, 94
teaching techniques 32, 43, 77, 92, 277
testimonials 154, 171, 365, 373, 432
Thaut 321, 326
The Denver Playschool 98, 102
Theory 95, 179
theory 7, 18, 39, 65, 95, 184, 191, 193, 223, 253, 260, 266, 269, 281, 284, 290, 309,
311-313, 351, 361, 368, 373, 375-379, 381, 386, 409, 425, 429, 433
time-out 13, 32, 84, 96, 122, 160, 162
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Toddler Center Model 121
toe-walking 349
touch 267, 269, 298, 303, 311, 335, 346-347, 355
toy play 12, 25, 44
transition 27
treatment contamination 423-424
treatment efcacy 14, 88
treatment gains 14, 23, 135
treatment protocol 11, 13, 19-22, 97, 99, 101, 146, 253, 386, 407, 416
Tudor 64, 79
typically developing 17, 19, 25, 34-35, 43-44, 55-56, 76, 98, 113, 121, 125, 268, 275,
284, 423
U
U.S. Surgeon General 22
UCLA model 64, 73
unbiased measure 48
unbiased research 147
unproven treatment 262, 278, 362
unsubstantiated method 148
unsubstantiated treatment 301, 412
V
validation 147, 293, 303-306
Verbal Behavior 58, 69-73, 86-87
Verbal Behavior Therapy 61-65, 79
video modeling 26
Vineland Adaptive Behavioral Scales 87
Vision Therapy 349-350, 352-257
visual dysfunction 349, 354
visual schedules 26, 83
visual strengths 84
visual-motor 113, 235
Vitamin B6 170, 173, 205-207, 209-212, 214-215, 368
vocabulary 30, 69, 233, 257, 338, 368
vocal tone 135
W
Walden 121-129
Weiss 103, 292, 306
Welch 309-311, 315
Index
533
Whipple 317
withdrawal 137, 309, 403, 423
within-subject 328
within-subject analysis 152, 340
within-subjects design 15, 30, 172, 174, 221, 225, 256, 291, 328, 340, 350, 390,
393, 395-397, 400, 422
Z
Zelazo 159, 160-164, 166