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The importance of early identification and intervention for children with or at risk for autism spectrum disorders

Authors:

Abstract

There has been a dramatic rise in the number of children being diagnosed with autism spectrum disorders (ASD), which has led to increased attention paid to assessment and intervention issues. This manuscript agrees with Camarata (2014) that the evidence base for early assessment and intervention should be expanded. However, it disagrees with Warren et al.'s (2011) assumption that there are not empirically validated early interventions. Reliable diagnosis has been documented during infancy and toddlerhood, and evidence suggests that the earlier the onset of intervention, the greater likelihood of an improved developmental trajectory. It is argued that early intervention is more cost and time efficient than a "wait and see" approach. With regard to published studies, the large amount of heterogeneity in the ASD population supports the use of rigorous single case experimental design research. It is an error to limit empirical evidence for treatments to only randomized clinical trials, which have the weakness of masking individual differences. Single case experimental designs examine the effects of intervention beyond typical maturation by allowing for clear estimations of developmental trajectories prior to the onset of intervention, followed by evaluation of the impact of the intervention. This commentary discusses the short- and long-term benefits of early diagnosis and intervention.
Early identifi cation
DSM-5 changes in the diagnosis of autism
Since Kanner s (1943) fi rst description of autism,
diagnosis continued to encompass the three general
categories of communication diffi culties, social defi -
cits, and restricted interests/repetitive behaviours.
However, when the Diagnostic and Statistical
Manual of Mental Disorders (DSM-5) (American
Psychiatric Association, 2013) was introduced in
May 2013, the three core domains of autism were
pooled into two categories (social communication
and restricted interests) and several of the sub-
classifi cations were removed including Asperger
Disorder, Rett Syndrome, Childhood Disintegrative
Disorder, and Pervasive Developmental Disorder-
Not Otherwise Specifi ed (PDD-NOS) (APA, 2000,
2013). This could likely affect the incidence rate of
ASD (McPartland, Reichow, & Volkmar, 2012;
Worley & Matson, 2012), but may not immediately
affect the prevalence as the recommendation is to
not re-evaluate individuals already qualifying for
ASD under various classifi cations (Hyman, 2013).
Introduction
This manuscript discusses Dr Stephen Camarata s
article entitled Early identifi cation and early inter-
vention in autism spectrum disorders: Accurate and
effective? We wholeheartedly agree with Dr Camar-
ata that there is a clear need to expand the evidence
base in the area of early diagnosis and intervention
services for children with autism spectrum disorder
(ASD) (Camarata, 2014, p. 8). There is a worldwide
increase in the prevalence of children being diagnosed
with ASD (Blumberg, Bramlett, Kogan, Schieve,
Jones, & Lu, 2013; Kim, Leventhal, Koh, Fombonne,
Laska, Lim, et al., 2011) and, thus, intervention pro-
grams are crucial. Camarata primarily discusses the
need for accurate early identifi cation and early inter-
vention. We continue the discussion by addressing
issues that are essential to understand these areas.
Our article includes a discussion of the changes in the
defi nition of ASD, the categorical exclusion of differ-
ent types of experimental designs, and the harmful
consequences of limiting acceptable designs to only
randomized clinical trials when evaluating treatment
outcomes for children with ASD and their families.
Correspondence: Dr Lynn Kern Koegel, Koegel Autism Center, University of California, Santa Barbara, Santa Barbara, CA, 93106-9490, USA. Email:
lynnk@education.ucsb.edu
International Journal of Speech-Language Pathology, 2014; 16(1): 50–56
ISSN 1754-9507 print/ISSN 1754-9515 online © 2014 The Speech Pathology Association of Australia Limited
Published by Informa UK, Ltd.
DOI: 10.3109/17549507.2013.861511
SCIENTIFIC FORUM: COMMENTARY
The importance of early identifi cation and intervention for children
with or at risk for autism spectrum disorders
LYNN KERN KOEGEL , ROBERT L. KOEGEL , KRISTEN ASHBAUGH &
JESSICA BRADSHAW
University of California, Santa Barbara, CA, USA
Abstract
There has been a dramatic rise in the number of children being diagnosed with autism spectrum disorders (ASD), which
has led to increased attention paid to assessment and intervention issues. This manuscript agrees with Camarata (2014)
that the evidence base for early assessment and intervention should be expanded. However, it disagrees with Warren et al. s
(2011) assumption that there are not empirically validated early interventions. Reliable diagnosis has been documented
during infancy and toddlerhood, and evidence suggests that the earlier the onset of intervention, the greater likelihood of
an improved developmental trajectory. It is argued that early intervention is more cost and time effi cient than a wait and
see approach. With regard to published studies, the large amount of heterogeneity in the ASD population supports the use
of rigorous single case experimental design research. It is an error to limit empirical evidence for treatments to only rand-
omized clinical trials, which have the weakness of masking individual differences. Single case experimental designs examine
the effects of intervention beyond typical maturation by allowing for clear estimations of developmental trajectories prior to
the onset of intervention, followed by evaluation of the impact of the intervention. This commentary discusses the short- and
long-term benefi ts of early diagnosis and intervention.
Keywords: Autism spectrum disorder , early identifi cation , early intervention.
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Importance of early identifi cation and intervention for ASD 51
This complicates the diagnostic process, as it is dif-
cult to understand why two children with identical
symptoms may have different diagnoses based solely
on the date of diagnosis. Thus, only one child would
receive ASD specifi c interventions while the other
would not even have the diagnosis according to the
DSM-5 guidelines.
Adding to the issues of diagnosing ASD is the fact
that it is indeed a spectrum disorder. Individuals
diagnosed with ASD who have fewer support needs
may present similarly to other developmental disor-
ders, and even those with signifi cant support needs
may have symptoms that overlap with other disor-
ders (e.g., language delays, non-verbal learning dis-
order, social communication disorder). Related, the
addition of social communication disorder (SCD),
which is not considered within the autism spectrum,
will also likely affect the incidence of ASD. Children
diagnosed with SCD previously may have qualifi ed
under the autism spectrum. In an attempt to address
the spectrum issue, the DSM-5 has provided,
albeit vague, severity levels of symptoms in the two
domains.
The variability in both symptoms and severity of
ASD has led many to argue that ASD should not
be viewed as a single disorder (Geschwind & Lev-
itt, 2007); its symptoms are complex depending on
individual characteristics and environmental con-
texts. However, studies have documented high reli-
ability of diagnosis at age 18 months if the examiner
is highly trained in ASD (Chawarska, Klin, Paul,
& Volkmar, 2007). Further, retrospective and pro-
spective studies are suggesting that social defi cits
are present during the child s fi rst year of life, and
therefore the current state of the art is leaning
toward an even earlier diagnosis.
In summary, the rationale for changing the DSM
is multi-fold, including improvement in the preci-
sion of the diagnosis, characterization of common
ASD symptoms within a single name, and descrip-
tion of severity level (APA, 2013). The consequences
of these changes are not yet known and there has
been great concern regarding whether the new cri-
teria threaten service delivery and eligibility. For
example, despite that children with less severe
symptoms of ASD are often amenable to interven-
tion and greatly benefi t from increased support,
many of these individuals may no longer qualify for
ASD services (Rondeau, Klein, Masse, Bodeau,
Cohen, & Guil é , 2011). Current research suggests
that some individuals with a DSM-IV diagnosis of
autism may no longer meet criteria for ASD in the
DSM-5. While there is likely to be an inherent
increase in the number of children diagnosed with
ASD, the overall rate will decrease because of the
dropped classifi cations (Taheri & Perry, 2012).
Thus, Camarata s (2014) discussion relating to
concern about accurate diagnosis is certainly shared
by others and it is an important area to consider.
Early intervention
Improved outcomes
Many of us who were in the fi eld of autism in the
1960s and 1970s are well aware of the poor out-
comes for children with ASD before numerous
comprehensive interventions were available. Almost
all children with ASD were placed in mental insti-
tutions by adolescence, with some placed as early
as toddlerhood. Anyone who spent time observing
the locked wards of these hospitals would attest to
the undesirable living conditions these children
had to endure. Each decade since has provided a
rich and accumulating database documenting
hundreds of effective interventions for children
with ASD ranging from parent education to school
interventions, behaviour management techniques
(Baker-Ericzen, Stahmer, & Burns, 2007), meth-
ods to improve communication (Koegel, Camarata,
Koegel, Ben-Tall, & Smith, 1998; Smith &
Camarata, 1999), socialization (Harper, Symon, &
Frea, 2008; Koegel, Werner, Vismara, & Koegel,
2005), academics (Koegel, Koegel, Frea, &
Green-Hopkins, 2003; Koegel, Singh, & Koegel,
2010; Robinson, 2011), pragmatics (Kaiser &
Warren, 1985), and so on. Many researchers feel
that ASD is not necessarily a life-long disabling
condition (Koegel & Koegel, 2012; Koegel,
Koegel, Shoshan, & McNerney, 1999), and most
research clinics report that, with intervention,
most children will be included in regular educa-
tion classrooms, and as many as 25% of children
will lose the diagnosis completely (Cohen, Amerine-
Dickens, & Smith, 2006; Helt, Kelley, Kinsbourne,
Pandey, Boorstein, Herbert, et al., 2008; Lovaas,
1987; Sallows & Graupner, 2005). Despite some
methodological concerns with the Lovaas (1987)
study, most researchers feel that the interventions
and resulting outcomes for children with ASD are
much improved today over previous methods. In
fact, prior to Lovaas (1987), Prizant (1983) showed
that, even with the best available interventions, a
staggering number ( 50%) of children diagnosed
with autism remained non-verbal throughout
their lives. In contrast, research today shows that
fewer than 10% of individuals with ASD will
remain non-verbal with intervention (Koegel,
2000). Moreover, data suggest that children
who are completely non-verbal who begin inter-
vention in the early pre-school years are far more
likely to become verbal than children who begin
intervention over the age of 5-years (Koegel, 2000).
The majority of the fi eld agrees that intervention
must start at the earliest point in time (Landa,
2007; Reichow, 2012; Rogers, 1996). The wait
and see method for early intervention of ASD is
likely to have signifi cant negative consequences on
children with ASD (National Research Council,
2001).
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52 L. K. Koegel et al.
Prevention of secondary symptoms
Individuals with ASD often exhibit aggression, tan-
trums, and self-injury. These behaviours are not in
the diagnostic criteria for ASD, but are secondary
symptoms that develop when primary symptoms
are not addressed. Almost all disruptive behaviours
(secondary symptoms) exhibited by children with
ASD have a communicative function (Carr &
Durand, 1985; Iwata, Dorsey, Slifer, Bauman, &
Richman, 1994) and, thus, are often avoided,
reduced, or eliminated, with early intervention
focused on teaching functionally-equivalent replace-
ment behaviours (FERBs) (Horner, Carr, Strain,
Todd, & Reed, 2002). Similarly, co-morbid symp-
toms, such as depression and anxiety (common in
adolescents and adults with ASD; Bauminger &
Kasari, 2000; Howlin, 2000) are often directly related
to diffi culties with socialization, and recent research
suggests that co-morbidity may be reduced if
the core social area is treated (Koegel, Ashbaugh,
Koegel, Detar, & Regester, in press). Alternatively,
failing to provide intervention for these symptoms
due to inaccurate or lack of diagnosis may result in
grave consequences. Early intervention techniques
to address core symptoms of ASD may prevent sec-
ondary symptoms and reduce the need for more
substantial and expensive interventions later in life.
Fiscal issues
Early intervention leads to fi scal savings, as untreated
symptoms of ASD become more abundant and severe
later in life, requiring more costly interventions
(Chasson, Harris, & Neely, 2007; Jacobson & Mulick,
2000; Jacobson, Mulick, & Green, 1998). Further,
these potential lifelong costs are prohibitive for indi-
viduals with ASD that need lasting support. Jacobson
et al. (1998) discussed a cost-benefi t model for early
intensive behavioural intervention for children who
received 3 years of early intervention between the age
of 2 years and school entry. In this model, cost sav-
ings were estimated in the range (in US dollars) of
$ 187 000 $ 203 000 per child aged 3 22 years and
$ 656 000 $ 1 082 000 per individual aged 3 55 years.
Furthering the fi nancial benefi ts of early treatment,
many interventions for infants have shown that par-
ents can be effective change agents with as little as 1
hour per week of professional support (Koegel, Singh,
Koegel, Hollingsworth, & Bradshaw, 2013; Steiner,
Gengoux, Klin, & Chawarska, 2013). By recruiting
parents as active interventionists in the habilitation
process at the earliest point in time, a much less costly
intervention can be implemented.
Parent stress
Parents are generally the fi rst to notice and report a
developmental problem in their children (Johnson &
Myers, 2007). Along with this perspicacious ability
of parents to identify a problem very early in life is
the coinciding stress that is almost universally pres-
ent in parents with a child with a disability (Baker,
Blacher, Crnic, & Edelbrock, 2002; Baker-Ericzn,
Brookman-Frazee, & Stahmer, 2005). Without tools
to address atypical behaviours, such as is the case
with ASD, anxious parents are likely to further
descend into deeper levels of health problems, such
as depression (Dumas, Wolf, Fisman, & Culligan,
1991; Hastings & Brown, 2002), possibly interfering
with their ability to effectively parent (Durand,
Hieneman, Clarke, Wang, & Rinaldi, 2013). In con-
trast, providing parents with tools to address symp-
toms at the earliest point in time is likely to give them
self-confi dence and empowerment (Durand, Hiene-
man, Clarke, & Zona, 2009; Koegel, Bimbela, &
Schreibman, 1996), thereby improving their own
mental health along with their child s behaviour. In
short, including parents in early intervention treat-
ment has signifi cant benefi ts for both the child and
the parents well-being.
Overcoming a disability with early intervention
Although Camarata (2014) suggests that some
consider ASD a lifelong disabling condition, many
researchers in the fi eld have documented case exam-
ples of children who have eliminated their symptoms
to the point where the individuals fi t within the typ-
ical range (Koegel & LaZebnik, 2004; Lovaas, 1987),
and almost half can eventually function without the
need for special support. However, without early
intervention this is unlikely. Most parents and pro-
fessionals have the goal of alleviating symptoms that
could negatively affect the child s ability to engage in
leisure activities and gain employment. Early inter-
vention increases the likelihood of improved long-
term outcomes.
Barriers to early intervention funding
As Camarata (2014) points out, an increasing num-
ber of states have passed legislation requiring private
insurance companies to cover intervention services
for ASD. Despite the intent of the initiatives, the
autism legislation has been accompanied by numer-
ous class action lawsuits for denial of services (e.g.,
Cigna, Philadelphia; Kaiser, California; Providence,
Oregon). Few would disagree that third party payers
are infamous for denial of claims. Again, this often
delays or eliminates the possibility of early interven-
tion, and magnifi es the costs of intervention in later
years.
Methodology
Some of the insurance denials along with some recent
publications have suggested that autism (Applied
Behaviour Analysis, or ABA) therapy is experimental
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Importance of early identifi cation and intervention for ASD 53
and that there is a lack of empirical evidence
for behavioural intervention approaches (Warren,
McPheeters, Sathe, Foss-Feig, Glasser, & Veenstra-
VanderWeele, 2011). The primary rationale relates to
the lack of randomized controlled trial (RCT) studies.
Quite candidly, we (as well as judges that ruled in
favour of the individuals with ASD) believe that there
are many scientifi cally validated interventions avail-
able. While RCTs are often considered the gold stan-
dard for clinical trials (such as drug evaluations), there
are problems when this methodology is applied to
behaviour interventions for individuals with ASD.
First, the heterogeneity of individuals diagnosed with
ASD makes it diffi cult to ascertain which participants
respond to a specifi c intervention and to what degree.
For example, a non-verbal child with ASD may not
respond as well as a verbal child with ASD to a par-
ticular intervention. However, if the study s partici-
pants include both verbal and non-verbal children, one
may mistakenly believe the intervention will help all
children with ASD when the signifi cance was analysed
at the group level. Second, unlike medication studies
where some participants are given a placebo, it may be
impossible to have a non-intervention control group
for young children with ASD. That is, parents who
suspect a delay will seek out services for their child,
which limits the possibility of a control group. While
an argument could be made that the treatment as
usual (TAU) in the community is sub-par, there is
variability in community services and, therefore, it
would be a challenge to compare an experimental and
TAU group. Third, because of the heterogeneity of
individuals diagnosed with ASD (as well as the diffi -
culty of fi nding a non-treatment group), often the
treatment effects are not signifi cant in a group design.
Next, and taking the perspective that there are not
enough RCTs to support the effectiveness of early
intervention, this leads us to question why more behav-
ioural treatment RCTs are not being funded by the
US federal government. One simply has to look at
funded research in the US to see that a disproportion-
ate amount of funding is being spent on physiological
research relative to psycho-educational research in the
area of ASD (Singh, Illes, Lazzeroni, & Hallmayer,
2009). Moreover, the research-to-practice gap from
when a scientifi c discovery is made until it is practiced
is often more than a decade. This means that even if a
RCT were started today, a child would be well past
the early intervention age by the time it was ready for
implementation (Greenwood & Abbott, 2001; Morris,
Wooding, & Grant, 2011). We believe that no one
would argue in favour of denying early intervention
services until more RCTs are conducted.
The value of rigorous single case
experimental designs
A single case research design is a well-accepted, rig-
orous, experimental approach for documenting
treatment effects, and more than 45 journals publish
studies with this highly regarded methodological
design (Kratochwill, Hitchcock, Horner, Levin,
Odom, Rindskopf, et al., 2013). Several hundred
studies have shown the positive effects of early inter-
vention through single case designs (National Autism
Center, 2009). Highly regarded volumes on empiri-
cally supported treatments for many different disor-
ders, including ASD, have reported the outcomes of
a wide range of rigorous experimental designs (e.g.,
Weisz & Kazdin, 2010). With regards to external
validity, single case studies can use procedures that
have been replicated in multiple settings and by mul-
tiple independent investigators to improve confi -
dence in generalizability. Further, single case
experimental designs, by virtue of their repeated
measurement time series analyses, control for any
changes that might be attributable to maturation
alone. In short, single case experimental designs pro-
vide a systematic and methodologically sound
approach to conducting research on early interven-
tion for ASD.
Treat behavioural functioning
There has been some concern that diagnosing a
child with ASD may result in some false positives,
particularly in the more mild cases or very young
children (Rondeau et al., 2011). However, given the
potential effects of ASD on the individual, the family,
and the larger community, and the success of early
intervention, it seems unwise and potentially detri-
mental to delay intervention or adopt the wait
and see if ASD develops approach. Because of the
heterogeneity in the diagnosis of ASD, a more intel-
ligent and sensible approach may be to provide
treatment for behavioural functioning rather than a
diagnostic label. For example, if a child is not talking
at 2 years of age and is uninterested in social interac-
tion, it makes more sense to teach the parents some
procedures to evoke fi rst words in a social context
rather than wait to see if the child is a late talker
or will develop ASD. Similarly, if a child exhibits
excessive tantrums, teaching appropriate replace-
ment communicative utterances would be advisable.
Even if there are some false positives, the risks of not
providing early intervention can be far more serious,
and contrasts negatively with the positive effects of
parent education and attention to specifi c symptoms
at the earliest possible age. In other words, not
addressing all of the symptoms because of a reluc-
tance to diagnose the child with ASD may place him
or her at a disadvantage.
Summary
As Hart and Risley (1992) pointed out over 2
decades ago, developmental trajectories are well
established by the pre-school years, and delays in
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54 L. K. Koegel et al.
communication are very likely to result in a lifetime
of challenges in many other areas. Approaches to
studying social dysfunction in infants have become
quite sophisticated, and the negative consequences
of social dysfunction can be profound (Klin, Jones,
Schultz, Volkmar, & Cohen, 2002). Promising inter-
ventions are available for infants within the fi rst year
of life (Koegel et al., 2013), as well as early in the
infant s second year of life (12 18 months) (Steiner
et al., 2013). These interventions draw from well-
established empirically-validated treatments that
have been effective with older children (Koegel &
Koegel, 2012) and rely heavily on the parents as
primary change agents, making early intervention
both time- and cost-effective, while simultaneously
reducing parent stress. We strongly encourage symp-
toms to be addressed at the earliest point in time so
that parents learn effective strategies to help their
children improve socially and communicatively and
to decrease the possibility of more severe secondary
symptoms. Warren et al. (2011) did not include any
single subject design studies, and only discussed
studies with 10 or more participants. A more com-
prehensive evaluation may be found through the
National Standards Project (National Autism Cen-
ter, 2009) and the National Research Council
(2001). Camarata (2014) points out the importance
of evidence and substantiated approaches to treat-
ing ASD. This is essential. Given the high numbers
of children currently being diagnosed with ASD
(Blumberg et al., 2013) undoubtedly this should be
one of the nation s highest priorities. However, dis-
counting research that uses single subject designs
(that have been used for over 40 years and are
accepted by over 45 professional peer-review jour-
nals) would, in essence, deny effective services to
millions of individuals with ASD that could benefi t
from these interventions. As a society, we cannot
ethically deny intervention to a child when many
scientifi cally sound studies exist, showing remark-
able intervention results for both decreasing unde-
sirable behaviours and improving desirable
behaviours (Eldevik, Hastings, Hughes, Jahr, Eike-
seth, & Cross, 2009; Horner et al., 2002). Stating
that an accurate diagnosis is not possible or that not
enough group studies exist will result in the failure
to provide services for many needy children. A more
intelligent approach would involve individualizing
specifi c empirically-validated interventions (either
through group or single subject research designs)
based on an infant or child s unique behavioural,
environmental, and family characteristics, and then
to carefully document the child s response to inter-
vention (RTI) (Fuchs & Fuchs, 2006) to understand
whether the intervention is effective for that child.
RTI allows us to change, modify, discontinue, or
continue a particular intervention. As Lovaas (1987)
showed, if a child is responding to intervention, a
larger dose may result in the ability of a child to
be indistinguishable from his or her peers. The
potential positive outcome of early detection and
intervention is not something that should be denied
to any child or family, and will ultimately have a
positive impact on society.
Declaration of interest: The authors report no
confl icts of interest. The authors alone are respon-
sible for the content and writing of the paper.
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... The failure to recognize and respond to children with ASD is a lost opportunity to provide suitable interventions to ameliorate the symptoms they experience and to provide support to their families [17]. Furthermore, the earlier this happens, the greater are the benefits [18]. ...
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Objectives: This report presents data on the prevalence of diagnosed autism spectrum disorder (ASD) as reported by parents of school-aged children (ages 6-17 years) in 2011-2012. Prevalence changes from 2007 to 2011-2012 were evaluated using cohort analyses that examine the consistency in the 2007 and 2011-2012 estimates for children whose diagnoses could have been reported in both surveys (i.e., those born in 1994-2005 and diagnosed in or before 2007). Data sources: Data were drawn from the 2007 and 2011-2012 National Survey of Children's Health (NSCH), which are independent nationally representative telephone surveys of households with children. The surveys were conducted by the Centers for Disease Control and Prevention's National Center for Health Statistics with funding and direction from the Health Resources and Services Administration's Maternal and Child Health Bureau. Results: The prevalence of parent-reported ASD among children aged 6-17 was 2.00% in 2011-2012, a significant increase from 2007 (1.16%). The magnitude of the increase was greatest for boys and for adolescents aged 14-17. Cohort analyses revealed consistent estimates of both the prevalence of parent-reported ASD and autism severity ratings over time. Children who were first diagnosed in or after 2008 accounted for much of the observed prevalence increase among school-aged children (those aged 6-17). School-aged children diagnosed in or after 2008 were more likely to have milder ASD and less likely to have severe ASD than those diagnosed in or before 2007. Conclusions: The results of the cohort analyses increase confidence that differential survey measurement error over time was not a major contributor to observed changes in the prevalence of parent-reported ASD. Rather, much of the prevalence increase from 2007 to 2011-2012 for school-aged children was the result of diagnoses of children with previously unrecognized ASD.