ArticlePDF Available

Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis

Authors:

Abstract

Purpose The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood intervention. Using an online questionnaire to survey autistic adults and caregivers of autistic children, the author collected data from 460 respondents on demographics, intervention types, and current pathological behaviors with symptom severity scales. This study noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic. ABA satisfaction ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers. Design/methodology/approach Participants were recruited for an online survey through social media networks, adult gatherings, social skills groups, and autism support groups nationwide. Adult inclusion criteria consisted of autism – diagnosed or self-diagnosed – and an age of 18 or older. A total of 460 respondents, consisting of autistic adults and caregivers of autistic children, completed an online survey. The caregiver entries ( n =217) concerned 79 percent male children, 21 percent female children (male to female 3.80:1), and one MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years. The adult entries ( n =243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and 14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years. Findings Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions. Originality/value The majority of adult respondents were female, raising questions about the population of online autistic survey respondents. Further, the high numbers of reported gender other than male or female in the adult respondents, as well as at least on MtF child from the caregiver respondents indicates that future studies should consider these intersections. These accompanied significant discrepancies in reporting bias between caregivers and ABA-exposed individuals, which highlight the need for the inclusion of the adult autistic voice in future intervention design. Based on the findings, the author predicts that nearly half of ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no decrease in PTSS severity.
Evidence of increased PTSD
symptoms in autistics exposed to
applied behavior analysis
Henny Kupferstein
Abstract
Purpose The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS)
in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood
intervention. Using an online questionnaire to survey autistic adults and caregivers of autistic children,
the author collected data from 460 respondents on demographics, intervention types, and current
pathological behaviors with symptom severity scales. This study noted PTSS in nearly half of ABA-exposed
participants, while non-exposed controls had a 72 percent chance of being asymptomatic. ABA satisfaction
ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower
on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA
predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect
satisfaction with the intervention in caregivers.
Design/methodology/approach Participants were recruited for an online survey through social media
networks, adult gatherings, social skills groups, and autism support groups nationwide. Adult inclusion
criteria consisted of autism diagnosed or self-diagnosed and an age of 18 or older. A total of 460
respondents, consisting of autistic adults and caregivers of autistic children, completed an online survey.
The caregiver entries (n ¼217) concerned 79 percent male children, 21 percent female children (male to
female 3.80:1), and one MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years.
The adult entries (n ¼243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and
14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years.
Findings Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD,
and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages
who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were
not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively)
of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure
had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the
caregivers reported using ABA-based interventions.
Originality/value The majority of adult respondents were female, raising questions about the population of
online autistic survey respondents. Further, the high numbers of reported gender other than male or female in
the adult respondents, as well as at least on MtF child from the caregiver respondents indicates that future
studies should consider these intersections. These accompanied significant discrepancies in reporting bias
between caregivers and ABA-exposed individuals, which highlight the need for the inclusion of the adult
autistic voice in future intervention design. Based on the findings, the author predicts that nearly half of
ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the
intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no
decrease in PTSS severity.
Keywords Trauma, Autism, PTSD, Posttraumatic stress disorder, Autism spectrum disorder, ABA,
Posttraumatic stress symptoms, PTSS, PTE, Applied behaviour analysis
Paper type Research paper
Applied behavior analysis (ABA) is the most prevalent early childhood intervention recommended
by clinicians after a child receives a diagnosis of autism (CDC, 2015). Behaviorists conceptualize
autism as a disorder characterized by both behavioral deficits in communication and social skills,
as well as excesses such as ritualistic behavior and tantrums (Green, 1996). ABA therapists
Received 13 August 2017
Revised 25 September 2017
Accepted 12 October 2017
Ethical approval: all procedures
performed in studies involving
human participants were in
accordance with the ethical
standards of the institutional and/
or national research committee
and with the 1964 Helsinki
declaration and its later
amendments or comparable
ethical standards.People-First
Language: the author is aware that
the Sixth Edition of the Publication
Manual of the American
Psychological Association stresses
the guidelines for sensitivity to
labels. Under Disabilities Section
3.15, the overall principleis to
maintain nonhandicapping
language to maintain integrity to all
individuals as human beings.
Under this principle, the manual
considers the term autisticto be
an excessive label which can be
regardedas a slur.Of note, we
use terms such as autistic adults
in this paper to respect the autistic
self-advocacy communitys
preference for identify-first
language over person-first
language. The author identifies as
autistic rather than a person with
autism. In principle, the author
adheres to a more neurodiverse
and nonhandicapping language of
ability without reduction of a
concealed identity.
Henny Kupferstein is an
Independent Researcher,
San Diego, California, USA.
DOI 10.1108/AIA-08-2017-0016 VOL. 4 NO. 1 2018, pp. 19-29, © Emerald Publishing Limited, ISSN 2056-3868
j
ADVANCES IN AUTISM
j
PA GE 1 9
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
enforce behavior modification with a rewards-based model and systematically encourage social
behaviors that have been deemed appropriate by the caregivers and the intervention team.
ABA is behaviorally focused where the client is motivated by the reward to modify a behavior by
completing a task without behavioral aberrations predetermined in the treatment goal (e.g. no eye
contact, hand flapping, hitting therapist or self) or risk the delay of receiving a reward such as
taking a break or computer time. An example of reinforcement during repeated exposure is with
ongoing task-based sessions where, the child then responds correctly, and the therapist
responds by giving the child a reinforcer. If the child responds incorrectly, a reinforcer is not
delivered and the therapist typically presents some kind of correction procedure, such as
modeling the correct response and then initiating another discrete trial(Granpeesheh et al.,
2009, p. 164). Thus, the intervention quantifies the individual characteristics of the client and the
therapist modifies the treatment in line with the clients response to the intervention.
Exposure to potentially traumatic events (PTEs) is often associated with significant psychological
and emotional distress, causing posttraumatic stress symptoms (PTSS). Per the DSM-5,
a specific cluster of PTSS can be diagnosed as a posttraumatic stress disorder (PTSD) and with
moderate, severe, or extreme levels. Autistic people have a sensitivity to the way any situation is
initially appraised, and a benign situation which was perceived as harmful or threatening to the
individual can become a PTE which could trigger PTSS due to their underlying vulnerability
(Ashley-Koch et al., 2006; Ma et al., 2005; Fatemi et al., 2009).
PTSD is based on neurochemical response patterns to acute stress and the neural mechanisms
mediating reward, fear conditioning and extinction, and social behavior. Only a small percentage
of individuals develop PTSD in the aftermath of a trauma, and highly specific genetic factors
contribute to PTSD susceptibility and resilience at both the behavioural and molecular level
(Dahlhoff et al., 2010, p. 1225). With autism, the epigenetic effects or gene-gene interactions may
act as a predisposition for PTSD based on hyperreactivity to mild exposures. Autism influences
trauma and traumatic stress, and the experience of the perceived trauma increases the
presentation of their autism symptoms (Kerns et al., 2015, p. 3481). The impact of traumatic
events on children adversely affects the childs development, and the child will suffer ongoing
damage even when he or she has healed from the trauma. Because higher-intensity events have
a greater risk to induce PTSD, we looked at autism early childhood interventions to measure
impact of exposure as a potentially traumatic stressor.
PTSD-like behaviors and persisting physiological abnormalities of the autonomic neural pathways
result from disturbancesin recovery from the initial stress response (Cohen et al., 2007, p. 476). Early
trauma thus increases vulnerability to the development of long-term behavioral disruptions which
persist into adulthood. Still, maladaptive behaviors may be a combination of nature and nurture, and
have been linked to increased parental stress (Hall and Graff, 2012), family coping strategies
(Kahana et al., 2015), and Reward Deficiency Syndrome marked by inhibited gamma-aminobutyric
acid (GABA) neurotransmitters and a lack of D2 receptors (Blum et al., 2000).
Compelling evidence continues to support that the GABA system is impacted in autism, and
alterations in the GABA receptor system may contribute to the abnormal phenotype and the
variable response to pharmacotherapy(Oblak et al., 2009, p. 206). In one study, severity of
autism symptoms, as reported on a questionnaire, were associated with differences in the level of
GABA in the brain as measured by magnetic resonance spectroscopy, which supports the
excitatory/inhibitory imbalance theory (Brix et al., 2015). With decreased GABA receptors,
the autistic brain is naturally flooded with serotonin and remains in hyperarousal state. This
suggests that an individuals predisposition to PTSD due to decreased GABA may be further
endangered by exposure to stressors that modify the gene, producing a physiological marker,
and psychological response. The psychological demands placed on the ABA recipient who has a
predisposition for an exaggerated perceptual response leading to physiological alterations may
be especially damaging.
Roberts et al. (2013) found that mothers who were exposed to childhood physical, emotional, and
sexual abuse had a 1.8 percent elevated risk of giving birth to an autistic child. These findings raise
the question if prima facie vulnerabilities for abuse stem from the inherent personality traits linked
to parents of autistic children, such as parental psychiatric disorders (Jokiranta et al., 2013),
paternal schizoid traits (Wolff et al., 1988), or maternal mood disorders (Vasa et al.,2012).PTSDin
PAG E 2 0
j
ADVANCES IN AUTISM
j
VOL. 4 NO. 1 2018
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
autistic individuals is not an established comorbidity; just as in the general population, the risk of
early onset of mental disorders among autistic people is dependent on gene-environmental
interactions, the timing of early developmental stressors (e.g. trauma), and history of
learning experiences and in some cases, the presence of a specific behavioral phenotype
(Fletcher et al., 2013, p. 8).
Mikics et al. (2008, p. 1207) found that even a single administration of electric footshock to rats
caused lasting trauma-induced alterations in social and behavioral functioning. Thus,
the behavioral deficits exacerbated activation of fear-related amygdala subdivisions, which can
be associated with trauma-induced alterations in social and behavioral functioning (p. 1207).
Other researchers also found that with readministration of electric footshock, the hyperarousal
does not depend on associative fear memory about the aversive encounter, but solely on
sensitization induced by the inescapable footshock(Siegmund and Wotjak, 2007, p. 103).
Even from the early beginnings of exposure, the presence of an intense peritraumatic stress
response may be a predictor of the subsequent development of a lasting negative emotional state
in humans exposed to trauma (Chen et al., 2012, p. 112).
In exposure therapy, a patient would not experience hyperarousal from the fear of the memory,
but rather from the horror of the induced retraumatization. Even from the early beginnings of
exposure, the presence of an intense peritraumatic stress response may be a predictor of the
subsequent development of a lasting negative emotional state in humans exposed to trauma
(Chen et al., 2012, p. 112). If an initial ABA session is perceived as traumatic by a child, then the
subsequent sessions would be a retraumatization of the memories. After neurobiological
changes in the brain have occurred, the resulting normalized behavior changes can be measured
by an ABA therapist using a functional behavioral assessment (FBA). Thus, positive behavioral
outcomes of the intervention are a consequence of a rewired brain. Based on clinical
observations, children exposed to ABA demonstrated fight/flight/freeze reactions to tasks that
would otherwise be deemed pleasurable to a non-exposed peer, and those responses increased
in severity based on length of exposure to ABA. Therefore, for the purpose of this study, we
investigated whether autistic individuals exposed to ABA intervention would meet the PTSD
criteria. We also tested for correlations between the severity of their PTSS and the length of time
exposed to the intervention. We hypothesized that exposure to ABA as compared to other
autism interventions would be highly correlated with reported PTSS severity, and that lack of
exposure to ABA would predict fewer reports of trauma symptoms.
Methods
Participants
Participants were recruited for an online survey through social media networks, adult gatherings,
social skills groups, and autism support groups nationwide. At least half of the participants were
recruited via e-mail through the Interactive Autism Network (IAN) Research database and
research registry; IAN probands must have received a professional diagnosis of ASD to join IAN
Research. Adult inclusion criteria consisted of autism diagnosed or self-diagnosed and an age
of 18 or older. Diagnostic reports were not collected nor stored to protect confidentiality of
participants, and validity of self-report of diagnosis was presumed (Woodbury-Smith et al., 2005;
Erhardt et al., 1999; Margolis et al., 2008). A total of 460 respondents, consisting of autistic adults
and caregivers of autistic children, completed an online survey. The caregiver entries (n¼217)
concerned 79 percent male children, 21 percent female children (male to female 3.80:1), with one
MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years. The adult
entries (n¼243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and
14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years.
Survey
To synthesize the complex challenges of comorbidities in this unique population, we created a
26-question survey that is an amalgam of both autism-specific and intervention-related
questions. We modeled these questions on the PCL-5 Psychopathy Checklist self-report
measure, which assesses the 20 symptoms of PTSD (Weathers et al., 2013) per the DSM-5
VOL.4NO.12018
j
ADVANCES IN AUTISM
j
PA GE 2 1
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
(American Psychiatric Association, 2013, pp. 271-74), and modified those questions to alsoassess
whether the intervention itself was the stressor in this context. The Clinician Administered PTSD
Scale (CAPS-5) age-adjusted severity conventions were used to score survey responses on
symptom clusters, with reference to thresholds of moderate, severe, or extreme, by summing each
criterion individually without averaging the total criterion scores. The self-designed measures were
informed by validated industry standard tools used in previous autism and PTSD studies (Stewart,
2016; Kosatka and Ona, 2014). The survey instrument was designed for standalone use in this
study only and not intended for clinical assessments. With 26 survey questions for 5 criteria, each
criterion had from two to four times the chance to be met by way of the survey questions.
The survey opened with a consent form which informed participants of their rights to withdraw at
any time, that participation was entirely voluntary, and that strict confidentiality would be
maintained. In the next two sections, information was obtained about basic demographics,
the type of autism childhood intervention received, if any, and the length of time the intervention
was applied. The fourth and final section consisted of 26 survey questions, and the participant
was instructed to answer as it pertains to the present, in the last four weeks.Any of the
26 questions were allowed to be omitted, and an omission was denoted as a null value in the
database. The 1-5 Likert scale was used for responses concerning symptom frequency, with 1
denoting never, 2 denoting rarely (1×/month), 3 denoting sometimes (2×/month), 4 denoting
quite a lot (2×/week), and 5 denoting always. At the conclusion of the survey questions,
participants had the option of entering textual comments into a free-response box before
submitting the survey. Collecting binary data by depersonalizing sensitive information in an online
survey may decontextualize the meaning of responses, which naturally occurs in contextually
grounded conversation, and therefore necessitated a comments box at the conclusion of
the survey (Mishler, 1991, p. 27). All data were entered directly by each respondent via an
internet-based software system (online at wufoo.com) and stored at a secure central server.
Questions and scoring considerations for each individual criterion, which were developed by the
research team for the purpose of this study, are discussed below.
Measures and scoring
An exposure subscale for Criterion A was computed by type of intervention, and length of time the
intervention was received. This was converted into percentage of lifetime exposure,which is the
percentage of total lifetime during which an intervention was received (total hours of intervention
divided by total hours of lifetime, multiplied by 100). Opinions of the intervention as influenced by the
exposure were collected to further confirm repeated exposure. For example, question 1 for adults
was, Has the intervention been effective for improving your overall functioning?and question 2
was, Do you believe you have met the therapists goals yet?By including an additional criterion
set for symptoms in children aged six years and younger, the DSM-5 diagnosis is more
developmentally sensitive and call[s] attention to differences in presentation among young children
vs adults (e.g., the reexperiencing of traumatic events through play or storytelling)(Kupfer et al.,
2013, p. 1692). In the DSM-5, one of four exposure types are needed to fulfill Criterion A for adults
and older children, and three exposure types are needed for children aged 6 and younger.
The survey provided two opportunities to meet the moderate threshold for both groups.
Respondents were required to experience one or more intrusion symptoms such as dissociative
flashbacks and nightmares of the trauma in order to meet Criterion B, and seven opportunities
were provided to meet the moderate threshold for both adults and children. For example,
questions for adults included, Do you react to other peoples instructions in the way that you
would react to the therapists instructions (e.g. how many minutes do I have to do this?and
what am I working for?or reach for your token/schedule board)?and When you were receiving
therapy, did you have more meltdowns than at the time of your diagnosis?
Persistent avoidance of stimuli related to the trauma (Criterion C) in adults entailed one or both of
the avoidance of thoughts or feelings associated with distressing memories, and the avoidance of
external reminders of the event, such as people, places, objects, activities, or situations that
arouse distressing memories. The survey provided six opportunities to meet the moderate
threshold. In the DSM-5, Criterion C assesses children not only for persistent avoidance but also
for negative alterations in cognition and mood with six subtypes, the latter of which is otherwise
PAG E 2 2
j
ADVANCES IN AUTISM
j
VOL. 4 NO. 1 2018
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
assessed in the adult Criterion D. One or more avoidance or alteration in cognition is required for
children to meet the threshold, and the survey provided 13 opportunities for it to be met.
Criterion D for adults assesses negative alterations in cognition and mood associated with the
trauma, which must be evidenced by two or more of seven possible alterations. Seven subscales
were assessed in separate questions; the last subscale of inability to experience positive
emotionwas eliminated to prevent double scoring with autism symptomatology and was
replaced with the DSM-5 addition of a persistent negative emotional state such as fear, horror,
guilt, or shame. For example, adults were asked, When you were receiving therapy, were you
embarrassed of the therapy you were receiving?
For adults, marked alterations in arousal and reactivity associated with the trauma (Criterion E)
required two of six possible hyperarousal types to meet the moderate threshold, and four of six
arousal types were represented in a total of six questions. Hyperarousal for children (Criterion D)
required two or more hyperarousal symptoms to meet this criterion, and four opportunities were
provided for it to be met. The arousal subtypes of hypervigilanceand exaggerated startle
responsewere omitted for adults and children, due to the risk of double scoring of
neurodevelopmental and psychiatric comorbidities. Instead, since sleep disturbance is classified
as a significant alteration in arousal, cognition and mood in the DSM-5, we asked caregivers,
Has your child had difficulty with falling or staying asleep the night before therapy, or winding
down after the therapy session?to measure how significantly arousal states impacted mood,
functioning, and sleep. This classification is supported by studies on fear-based trauma;
alteration of sleep architecture in animals is a fundamental indicator of fear training, and laboratory
rats displayed an expected REMS-selective decrease in sleep when studied in the presence of
situational reminders in a PTSD simulation study (Pawlyk et al., 2005, p. 276).
For adult respondents and children ages seven and older, severity scores for Criteria B through E
were obtained by summing the scores for the individual subscales within each criterions cluster,
where 0 ¼absent, 1 ¼mild, 2 ¼moderate, 3 ¼severe, and 4 ¼extreme. For children ages
six and under, severity scores for Criteria B through D were obtained by summing the scores for
the individual subscales within each criterions cluster, where severity 0 ¼absent, 1 ¼mild,
2¼moderate, 3 ¼severe, and 4 ¼extreme. Individual Likert selections of sometimes,
2×/monthselection of Likert 3 and 4 was marked as severe, where 5 remained as extreme
and were converted into numerical values for scoring. Initial diagnostic determination was made
by a cumulative sum of individual subscales within each criterions cluster. Binary classification of
PTSS was determined by the cumulative scores exceeding a PTSD diagnostic threshold of 2,
where severity 0 ¼absent, 1 ¼mild, 2 ¼moderate, 3 ¼severe, and 4 ¼extreme.
Results
Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD,
and extreme levels of severity were recorded in 47 percent of the affected subgroup.
Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the
PTSD criteria than respondents who were not exposed to ABA. Adults and children both had
increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were
exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of
reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported
using ABA-based interventions as compared to 11 percent adults. Autism early intervention
types were entered by participants from a pre-formatted list or a text-entry box for other.
Non-exposed controls concerning interventions other than ABA are listed by caregiver and adult
percentages, respectively, and values are based on 96 percent of quantifiable entries: DIR
Floortime: 2 percent, 0 percent; RDI Gutstein: 1 percent, 0 percent; Son-Rise: 1 percent,
1 percent; AACs: 5 percent, 0 percent; RPM: 2 percent, 1 percent; FC: 1 percent, 2 percent;
Speech: 6 percent, 3 percent; OT: 6 percent, 7 percent; PT: 3 percent, 2 percent; CBT:
1 percent, 3 percent; Medication: 2 percent, 7 percent; none: 20 percent, 57 percent; other:
3 percent, 4 percent (see Figure 2). Financial eligibility for ABA services terminates at the age of
18 and similar autism interventions do not persist into adulthood; findings across both groups
were generalized to be equally stratified and representative of a diagnosis received at an age
younger than the adult group average.
VOL.4NO.12018
j
ADVANCES IN AUTISM
j
PA GE 2 3
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
Trauma
Based on our findings, the highest rates and severity of PTSS were reported by caregivers upon
initial exposure to the intervention. Adults and children showed similar levels of severity score at
the initial exposure to ABA (see Figure 3). While adults and children met the threshold of PTSD
during the initial exposure to the ABA intervention, the reported symptoms did not significantly
change with increasing exposure for children, B¼8.84, F(1,215) ¼0.89, p¼0.35. By contrast,
adults reported significantly greater symptom severity with increasing exposure, B¼44.12,
F(1,240) ¼4.52, p¼0.03.
In adults, the severity of symptoms was positively correlated with the duration of exposure to
the intervention, such that severity scores tended to increase by half of a severity threshold
with every additional increment of 5 percent in lifetime exposure. This translates to a prediction
that for every increment of 5 percent in their lifetime exposure to ABA, the individuals severity
score will increase by half of a severity threshold. The average 18-month-old autistic
child who is exposed to 40 hours of ABA per week will be expected to surpass the severe
threshold of the PTSD criteria within six weeks, given 1.5 percent lifetime exposure.
The average three-year-old autistic child who is exposed to 20 hours of ABA per week
will be expected to surpass the severe threshold of the PTSD criteria within five months of ABA
exposure. The average five-year-old autistic child who is exposed to ten hours of ABA per week
will be expected to surpass the severe threshold of the PTSD criteria before their
seventh birthday.
Figure 1 The prevalence of posttraumatic stress symptoms (PTSS) by intervention
type (ABA or non-ABA), and respondent group
PTSS
Notes: Horizontal bar for each respondent intervention group
indicates the percentage of subjects from each group who either
met the threshold of PTSS (leftmost value) or asymptomatic
(rightmost value). The two lowermost bars represent the
percentage of subjects who met the PTSS threshold as
distinguished by intervention type and averaged across both
respondent groups
Asymptomatic
Adults
non-ABA
Adults
ABA
Caregivers
ABA
Caregivers
non-ABA
Average
non-ABA
0% 50%25% 75% 100%
72%
54%
71%
59%
38%
73%
62%
27%
41%
29%
46%
28%
Average
ABA
PAG E 2 4
j
ADVANCES IN AUTISM
j
VOL. 4 NO. 1 2018
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
Figure 2 Non-exposed controls by intervention for both groups
Other
6.0%
None
37.9%
Medication
4.3%
CBT
1.7%
PT
5.2%
OT
12.1%
Speech
10.3%
FC
1.7%
RPM
3.4%
AACS
8.6%
Son-Rise
1.7%
RDI (Gutstein’s)
2.6%
DIR Floortime
4.3%
Other
AACs
RPM
Speech
OT
PT
None
Notes: Pie chart of autism early childhood intervention values indicate selections
made by for caregiver and adult participants combined. From the top-center
moving counterclockwise, selections include other: 6 percent; none: 37.9 percent;
medication (psychiatry): 4.3 percent; cognitive behavioral therapy (CBT): 1.7
percent; DIR Floortime: 4.3 percent; RDI Gutstein: 2.6 percent; Son-Rise: 1.7
percent; augmentative and alternative communication (AACs): 8.6 percent; rapid
prompting method (RPM): 3.4 percent; facilitated communication (FC): 1.7
percent; speech (speech and language pathology): 10.3 percent; occupational
therapy (OT): 12.1 percent; physical therapy (PT): 5.2 percent
Figure 3 Regression analysis of PTSD severity on ABA exposure duration
PTSD severity for childern
PTSD severity for adults
Trendline for children r2=0.004
Trendline for adults r2=0.018
4.00
3.00
2.00
1.00
0.00
0 0.01 0.02 0.03 0.04
Percentage of Lifetime –Duration of Exposure
Notes: The vertical axis represents PTSD severity thresholds, where 0 = absent,
1 = mild, 2 = moderate, 3 = severe and 4 =extreme. The horizontal axis
represents the duration of ABA exposure as a percentage of the individual’s
lifetime. Adult respondents with PTSD are represented as diamonds, and
children meeting the PTSD criteria are represented as circlesDuration of
Exposure
PTSD Severity, 0-Absent to 4-Extreme
VOL.4NO.12018
j
ADVANCES IN AUTISM
j
PA GE 2 5
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
Satisfaction
Both ABA-exposed groups showed a nonsignificant increase in success ratings for increased
exposure duration. For caregiver respondents, a positive relationship was observed between
relative duration of exposure to ABA and perceived intervention effectiveness, although this
increase was not statistically significant, B¼5.39, F(1,85)¼0.23, p¼0.63. Adults tended to rate
the intervention as only mildly successful from initial exposure and did not increase satisfaction with
length of exposure, B¼16.27, F(1,23) ¼0.27, p¼0.60. For adults with ABA exposure longer than
0.20 percent of lifetime, or an adult in their late thirties accruing more than one month of exposure,
nobody reported neutral or mild satisfaction; rather, opinion and satisfaction was reported with
Likert extremes of 1 or 5. Caregivers tended to rate the intervention as more successful than did
adults, even for very low durations of exposure, and increased success ratings with exposure time.
Of the caregivers who voluntarily commented that they had discontinued ABA, 9 percent indicated
that it was due to insufficient progress or negative alterations in their childsfunction.
Response bias and disparities in reporting
Only 50 percent of the adult respondents answered all of the survey questions compared to
61 percent of caregivers. We found a significant disparity in survey abandonment between
ABA-exposed respondents and non-exposed controls. An analysis of abandoned surveys
revealed that 92 percent of those abandonments concerned non-exposed adults, as compared
to 8 percent of ABA-exposed adults who submitted the survey. In the caregiver group,
23 percent of caregivers of ABA-exposed children and 77 percent of caregivers of non-exposed
children abandoned the survey. Survey abandonment for non-exposed respondents tended to
occur around questions relating to Criterion D and E pertaining to self-esteem, negative
perceptions of self, aggression, self-harm, and shame. We found that ABA-exposed adult
respondents scored themselves with an average 68 percent higher severity rating when
compared to non-exposed adults for questions within Criterion D and E.
Discussion
The aims of this research were to identify the correlations between PTSS and autism childhood
interventions, and to investigate whether severity of symptoms increase with length of exposure
time. Of all autism early childhood interventions surveyed, ABA correlated with the highest ratings
of PTSS in both children and adults. By comparison, individuals who did not receive ABA
remained without PTSS and reported excellent daily functioning. While the ABA administration
may not be traumatic in application, the encounter lingers with lasting fear-related associative
memories to the autistic client.
In an initial ABA session, a therapist might enforce the suppression of an autistic clients
self-stimulatory behaviors, which is merely a visceral reaction to seek meaningful change in ones
environment in an effort to prevent sensory overload. The continued exposure to such an
intervention would activate the fear-association of the memory of the initial suppression rather
than a fear of the upcoming session, indicating the etiology of a PTE. Based on our findings,
the highest rates and severity of PTSS were reported upon initial exposure to the intervention,
however, there was no significant correlation between PTSS and length of exposure to ABA as
reported by caregivers. There was a significant correlation between PTSS and length of exposure
to ABA as self-reported by adults.
We investigated survey responses of adults who answered questions to Criterion D and E
pertaining to self-esteem, negative perceptions of self, aggression, self-harm, and shame. We
found that ABA-exposed adult respondents scored themselves with an average 68 percent
higher severity rating when compared to non-exposed adults, perhaps arising from negative
self-image and familiarity with the grading and scrutiny by behaviorists. Specifically, the FBA in
use by behaviorists is the gold standard for identifying environmental variables related to problem
behavior (e.g. aggression, self-injury) and the events that occur immediately before and after
the behavior (Oliver et al., 2015, p. 817). Individuals exposed to ABA and FBA assessments are
accustomed to rating their behavior as it pertains to aggression and self-harm. We conjecture
PAG E 2 6
j
ADVANCES IN AUTISM
j
VOL. 4 NO. 1 2018
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
that the FBAs may be why ABA-exposed respondents completed the self-harm/aggression
survey questions without much hesitation, when compared to the high survey abandonment
rate of their non-exposed peers around the same questions. The perception of self becomes
significantly altered after extended exposure to ABA, and exposed individuals may become
emotionally distant as they objectively measure themselves or their loved ones.
Behaviorist theorists believe that changing the parentsperception of their children is key to
changing the childs behavior. However, other researchers found that instead of the childs
behavior modifying, the parents became conditioned to report the childsobservedbehaviorwitha
more positive view (Loop et al., 2017). Consistent with our findings, caregivers of ABA-exposed
children reported higher satisfaction ratings with longer intervention exposure, even though their
PTSS severity scores did not change significantly. ABA interventions require caregiver involvement
and for the parent to set boundaries with the child when the therapist is not in the home. Such
programs focus on helping parents to model more effective behaviourand produce a statistically
significant reduction in child conduct problems (Furlong et al., 2010, p. 3). A large proportion of
parenting interventions directly derived from the social learning theory contribute to reduce
preschoolersexternalizing behavior, but their multimodal format prevents us to know what causes
change in childrens behavioral adjustment(Loop et al., 2017). While researchers are interested in
parent involvement in minimizing negative childhood behavior, few studies investigate the extent to
which the manipulation of parenting variables influences the caregiver. The reported PTSS declines
in children with long-term ABA exposure may reflect how the intervention might manipulate the way
in which a caregiver perceives their childs behavior after an extended period of time.
Conclusion
Autistic respondents exposed to ABA were 1.86 times more likely to meet the PTSD diagnostic
criteria. Overall, individuals exposed to ABA had a 46 percent likelihood of indicating PTSS.
In contrast, 72 percent of non-exposed individuals did not report PTSS. Symptom severity was
more harshly graded by respondents concerning ABA exposure. Severity of PTSS in
ABA-exposed individuals was heightened upon initial exposure to the intervention, but decreased
over time. Opinions pertaining to ABA intervention satisfaction were more positively indicated by
caregivers than by adults, however, the caregiver satisfaction was generally reported within the
neutral range. The longer a child was exposed to ABA, the more likely a caregiver was to rate the
intervention as effective for improving overall functioning.
The majority of adult respondents were female, raising questions about the population of online
autistic survey respondents. Further, the high numbersof reported gender other than male or female
in the adult respondents, as well as at least one MtF transgender child from the caregiver
respondents indicates that future studies should consider these intersections. These accompanying
significant discrepancies in reporting bias between caregivers and ABA-exposed individuals,
highlights the need for the inclusion of the adult autistic voice in future intervention design. Based on
our findings, we predict that nearly half of ABA-exposed autistic children will be expected to meet the
PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will
tend to be an increase in parent satisfaction despite no decrease in PTSS severity.
References
American Psychiatric Association (2013), Diagnostic and Statistical Manual of Mental Disorders: DSM-5,
American Psychiatric Association, Washington, DC.
AshleyKoch, A.E., Mei, H., Jaworski, J., Ma, D.Q., Ritchie, M.D., Menold, M.M., Delong, G.R., Abramson, R.K.,
Wright, H.H., Hussman, J.P., Cuccaro, M.L., Gilbert, J.R., Martin, E.R. and Pericak-Vance, M.A. (2006),
An analysis paradigm for investigating multilocus effects in complex disease: examination of three GABAA
receptor subunit genes on 15q11q13 as risk factors for autistic disorder,Annals of Human Genetics,Vol.70
No. 3, pp. 281-92.
Blum, K., Braverman, E.R., Holder, J.M., Lubar, J.F., Monastra, V.J., Miller, D., Lubar, J.O., Chen, T.J. and
Comings, D.E. (2000), The reward deficiency syndrome: a biogenetic model for the diagnosis and treatment of
impulsive, addictive and compulsive behaviors,Journal of Psychoactive Drugs, Vol. 32, Supplement, pp. 1-112.
VOL.4NO.12018
j
ADVANCES IN AUTISM
j
PA GE 2 7
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
Brix, M.K., Ersland, L., Hugdahl, K., Grüner, R., Posserud, M.B., Hammar, Å., Craven, A.R., Noeske, R.,
Evans, C.J., Walker, H.B., Midtvedt, T. and Beyer, M.K. (2015), Brain MR spectroscopy in autism spectrum
disorder the GABA excitatory/inhibitory imbalance theory revisited,Frontiers in Human Neuroscience,
Vol. 9 No. 365, pp. 1-12.
CDC (2015), Autism spectrum disorder (ASD): treatment, Center for Disease Control and Prevention, Atlanta,
GA, March 10, 2017, available at: www.cdc.gov/ncbddd/autism/treatment.html (accessed May 13, 2017).
Chen, X., Li, Y., Li, S. and Kirouac, G.J. (2012), Early fear as a predictor of avoidance in a rat model of
post-traumatic stress disorder,Behavioural Brain Research, Vol. 226 No. 1, pp. 112-7.
Cohen, H., Kaplan, Z., Matar, M.A., Loewenthal, U., Zohar, J. and Richter-Levin, G. (2007), Long-lasting
behavioral effects of juvenile trauma in an animal model of PTSD associated with a failure of the autonomic
nervous system to recover,European Neuropsychopharmacology, Vol. 17 No. 6, pp. 464-77.
Dahlhoff, M., Siegmund, A., Golub, Y., Wolf, E., Holsboer, F. and Wotjak, C.T. (2010), AKT/GSK-3β/
β-catenin signalling within hippocampus and amygdala reflects genetically determined differences in
posttraumatic stress disorder like symptoms,Neuroscience, Vol. 169 No. 3, pp. 1216-26.
Erhardt, D., Epstein, J.N., Conners, C.K., Parker, J.D.A. and Sitarenios, G. (1999), Self-ratings of ADHD
symptomas in auts II: reliability, validity, and diagnostic sensitivity,Journal of Attention Disorders, Vol. 3 No. 3,
pp. 153-8.
Fatemi, S.H., Reutiman, T.J., Folsom, T.D. and Thuras, P.D. (2009), GABAA receptor down regulation
in brains of subjects with autism,Journal of Autism and Developmental Disorders,Vol.39No.2,
pp. 223-30.
Fletcher, R.J., Barnhill, J. and Cooper, S. (Eds) (2013), Diagnostic Manual Intellectual Disability (DM-ID-2):
A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability, National Assn for the
Dually Diagnosed, Kingston, NY.
Furlong, M., McGilloway, S., Bywater, T., Hutchings, J., Donnelly, M., Smith, S.M. and ONeill, C. (2010),
Behavioural/cognitivebehavioural groupbased parenting interventions for children age 312 with early
onset conduct problems,Cochrane Database of Systematic Reviews, Vol. 1, John Wiley & Sons, Oxford.
Granpeesheh, D., Tarbox, J. and Dixon, D.R. (2009), Applied behavior analytic interventions for children with
autism: a description and review of treatment research,Annals of Clinical Psychiatry, Vol. 21 No. 3,pp. 162-73.
Green, G. (1996), Early behavioral intervention for autism: what does research tell us, in Maurice, C., Green, G.
and Luce, S.C. (Eds), Behavioral Intervention for Young Children with Autism: A Manual for Parents and
Professionals, PRO-ED, Austin, TX, pp. 29-44.
Hall, H.R. and Graff, J.C. (2012), Maladaptive behaviors of children with autism: parent support, stress, and
coping,Issues in Comprehensive Pediatric Nursing, Vol. 35 Nos 3-4, pp. 194-214.
Jokiranta, E., Brown, A.S., Heinimaa, M., Cheslack-Postava, K., Suominen, A. and Sourander, A. (2013),
Parental psychiatric disorders and autism spectrum disorders,Psychiatry Research, Vol. 207 No. 3,
pp. 203-11.
Kahana, E., Lee, J.E., Kahana, J., Goler, T., Kahana, B., Shick, S., Burk, E. and Barnes, K. (2015), Childhood
autism and proactive family coping: intergenerational perspectives,Journal of Intergenerational
Relationships, Vol. 13 No. 2, pp. 150-66.
Kerns, C.M., Newschaffer, C.J. and Berkowitz, S.J. (2015), Traumatic childhood events and autism
spectrum disorder,Journal of Autism and Developmental Disorders, Vol. 45 No. 11, pp. 3475-86.
Kosatka, D. and Ona, C. (2014), Eye movement desensitization and reprocessing in a patient with Aspergers
disorder: case report,Journal of EMDR Practice and Research, Vol. 8 No. 1, pp. 13-8.
Kupfer, D.J., Kuhl, E.A. and Regier, D.A. (2013), DSM-5 the future arrived,Journal of the American Medical
Association, Vol. 309 No. 16, pp. 1691-2.
Loop, L., Mouton, B., Stievenart, M. and Roskam, I. (2017), One or many? Which and how many parenting
variables should be targeted in interventions to reduce childrens externalizing behavior?,Behaviour
Research and Therapy, Vol. 92, pp. 11-23.
Ma, D.Q., Whitehead, P.L., Menold, M.M., Martin, E.R., Ashley-Koch, A.E., Mei, H., Ritchie, M.D., DeLong, G.R.,
Abramson, R.K., Wright, H.H., Cuccaro, M.L., Hussman, J.P., Gilbert, J.R. and Pericak-Vance, M.A. (2005),
Identification of significant association and gene-gene interaction of GABA receptor subunit genes in autism,
The American Journal of Human Genetics, Vol. 77 No. 3, pp. 377-88.
PAG E 2 8
j
ADVANCES IN AUTISM
j
VOL. 4 NO. 1 2018
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
Margolis, K.L., Qi, L., Brzyski, R., Bonds, D.E., Howard, B.V., Kempainen, S., Liu, S., Robinson, J.G.,
Safford, M.M., Tinker, L.T. and Phillips, L.S. (2008), Validity of diabetes self-reports in the womens health
Initiative: comparison with medication inventories and fasting glucose measurements,Clinical Trials, Vol. 5
No. 3, pp. 240-7.
Mikics, É., Tóth, M., Varjú, P., Gereben, B., Liposits, Z., Ashaber, M., Halász, J., Barna, I., Farkas, I. and
Haller, J. (2008), Lasting changes in social behavior and amygdala function following traumatic experience
induced by a single series of foot-shocks,Psychoneuroendocrinology, Vol. 33 No. 9, pp. 1198-210.
Mishler, E.G. (1991), Research Interviewing, Harvard University Press, Cambridge, MA.
Oblak, A., Gibbs, T.T. and Blatt, G.J. (2009), Decreased GABAA receptors and benzodiazepine binding sites
in the anterior cingulate cortex in autism,Autism Research, Vol. 2 No. 4, pp. 205-19.
Oliver, A.C., Pratt, L.A. and Normand, M.P. (2015), A survey of functional behavior assessment methods
used by behavior analysts in practice,Journal of Applied Behavior Analysis, Vol. 48 No. 4, pp. 817-29.
Pawlyk, A.C., Jha, S.K., Brennan, F.X., Morrison, A.R. and Ross, R.J. (2005), A rodent model of sleep
disturbances in posttraumatic stress disorder: the role of context after fear conditioning,Biological
Psychiatry, Vol. 57 No. 3, pp. 268-77.
Roberts, A.L., Lyall, K., Rich-Edwards, J.W., Aschorio, A. and Weisskopf, M. (2013), Association of maternal
exposure to childhood abuse with elevated risk for autism in offspring,JAMA Psychiatry, Vol. 70 No. 5,
pp. 508-15.
Siegmund, A. and Wotjak, C.T. (2007), Hyperarousal does not depend on trauma-related contextual memory
in an animal model of posttraumatic stress disorder,Physiology & Behavior, Vol. 90 No. 1, pp. 103-7.
Stewart, M. (2016), Traumatic stress in parents of children with autism spectrum disorder, No. DPsych
(Clin), Deakin University, Victoria.
Vasa, R.A., Anderson, C., Marvin, A.R., Rosenberg, R.E., Law, J.K., Thorn, J., Sarphare, G. and Law, P.A.
(2012), Mood disorders in mothers of children on the autism spectrum are associated with higher functioning
autism,Autism Research and Treatment, Vol. 2012 No. 435646, pp. 1-8, available at: http://dx.doi.org/10.
1155/2012/435646
Weathers, F.W., Litz, B.T., Keane, T.M., Palmieri, P.A., Marx, B.P. and Schnurr, P.P. (2013), The PTSD
checklist for DSM-5 (PCL-5), Scale available from the National Center for PTSD, available at: www. Ptsd.va.gov
(accessed April 20, 2017).
Wolff, S., Narayan, S. and Moyes, B. (1988), Personality characteristics of parents of autistic children:
a controlled study,Journal of Child Psychology and Psychiatry, Vol. 29 No. 2, pp. 143-53.
Woodbury-Smith, M.R., Robinson, J., Wheelwright, S. and Baron-Cohen, S. (2005), Screening adults for
Asperger syndrome using the AQ: a preliminary study of its diagnostic validity in clinical practice,Journal of
Autism and Developmental Disorders, Vol. 35 No. 3, pp. 331-5.
Corresponding author
Henny Kupferstein can be contacted at: henny@hennyk.com
For instructions on how to order reprints of this article, please visit our website:
www.emeraldgrouppublishing.com/licensing/reprints.htm
Or contact us for further details: permissions@emeraldinsight.com
VOL.4NO.12018
j
ADVANCES IN AUTISM
j
PA GE 2 9
Downloaded by 68.7.237.23 At 07:40 05 February 2018 (PT)
... Furthermore, there is evidence of increased post-traumatic stress in autistic individuals who have been exposed to ABA therapy (Kupferstein, 2018). Nearly half of the autistic adult and autistic child participants in Kupferstein's study who were exposed to ABA early childhood intervention, noted posttraumatic stress symptoms. ...
... Nearly half of the autistic adult and autistic child participants in Kupferstein's study who were exposed to ABA early childhood intervention, noted posttraumatic stress symptoms. These included intrusive symptoms (e.g., nightmares of the traumatic event and flashbacks), persistent avoidance of trauma-related stimuli, negative alterations in cognition and mood associated with the traumatic event, and marked alterations in arousal and reactivity associated with the traumatic event (Kupferstein, 2018). More recently, qualitative evidence supports these findings further raising concerns regarding the long-term Note. ...
Article
Full-text available
Restricted and repetitive behaviours (RRBs) are observed in many children presenting with characteristics of autism and are frequently the targets of psychological interventions. This study used Interpretative Phenomenological Analysis (IPA) to identify positive and negative interpretations from four young adults who received behavioural interventions in their childhood designed to ‘fix’ RRBs. Two superordinate themes were identified: (1) Doubt, stigma and being fixed according to others, and (2) Embracing Authenticity. They highlighted juxtaposed positions from exclusion, rejection, criticism, and self-doubt in childhood, to rejecting societal censure and embracing authentic growth in adult life. As adults, though the participants recognised themselves as neurologically different from others, they redefined themselves through a lens of neurodiversity, and therefore as not needing to be fixed.
... Importantly, caregiver assessments of treatment acceptability are often influenced by variables which extend beyond specific operations and expand into variables such as the immediacy and durability of treatment effects (e.g., Call et al., 2015). Notwithstanding, our field's own checkered history (Bailey & Burch, 2016), and pressure applied from vulnerable groups who have been harmed by the misapplication of behavior analysis (e.g., Kupferstein., 2018) have served as a catalyst for critical thinking (e.g., Milton, 2018;Shyman, 2016;Wilkenfeld & McCarthy, 2020) which has pushed the field to attend to and reflect on variables which extend beyond effectiveness in accomplishing targeted objectives. These reflections often transform into operationalized actions practitioners can take to survey client values and enhance the social validity of their efforts (e.g., Barton & Meadan, 2019;Rajaraman et al., 2022;Staubitz et al., 2018). ...
Article
Full-text available
Individualization and iterative design are essential components of the assessment and treatment of challenging behavior. Currently, there are few validated frameworks for engaging in iterative processes. Due to the nature of single‐case design, empirically rigorous evaluations of decision‐tree processes are particularly prohibitive. Notwithstanding, evaluations are needed. In this paper we first describe a function‐informed and mechanisms‐based (FIMB) framework for selecting treatment components employed by a university‐based practicum experience designed to expose pre‐service practitioners to a valid treatment process for challenging behavior. Then, we share a completed retrospective consecutive case series across a 6‐year period in which we conducted a technique analysis to identify which procedures were most commonly selected in the practicum, and the impact of those choices on client outcomes. The results suggest that the model can be highly effective for some, but not all, cases. Implications are discussed.
... Despite this purpose, social validity assessments often appear engineered to endorse whatever program they were intended to critique and the result has been a mirage of unanimous and enthusiastic support for behavior analytic programming reflected within the annals of ABA journals, but not necessarily elsewhere. As complaints against behavior analysis from those harmed by its misapplication grow louder and more uniform (e.g., Kupferstein., 2018;Milton, 2018;Shyman, 2016;Wilkenfield & McCarthy, 2020), the repercussions of poorly selected programmatic goals and methods are both dire, and increasingly apparent. ...
Article
Full-text available
This paper represents the third in a three‐part series intended to challenge the social validity of the services provided by a university‐based practicum for addressing the challenging behavior of individuals with disabilities. In this paper, we surveyed referring stakeholders (e.g., parents, teachers) of past service recipients to explore the acceptability of the service model's goals, methods, and outcomes. We probed for tensions resultant from the model's threefold mission (service, training, and research) and explored how conflicts between these goals affected the quality of our services. Generally, results were favorable and appeared to support continued model implementation, but not without qualification. Emergent themes, areas for improvement, and future directions for intervention research are all discussed.
... However, many families getting this therapy cannot afford it due to the exorbitant expense and lack of human and financial resources. Throughout the implementation and promotion of the therapy, several researchers also have expressed concerns that its misuse could result in additional harm to children with ASD, including more severe stereotyping and depression (9). ...
Article
Background: Peer-mediated intervention (PMI) is an intervention that teaches normally developing peers to help children with autism spectrum disorder (ASD) actively participate in social interactions. Previous studies have shown that PMI applied to school settings is effective for children with ASD, but more multiple-baseline single-subject design. Many questions are still not clear due to the large clinical variability in children with ASD. This study investigated the effectiveness of PMI on social skills of children with ASD at varying symptom levels and analyzed the specific changes. Methods: This study used a randomized, single-blind, parallel-controlled design to analyze the effect of PMI in a hospital setting. Fifty-five children aged 4-12 years were diagnosed with ASD by clinicians using the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and stratified randomly allocated to either the experimental group or the control group using the envelope method. The experimental group utilized PMI, whereas the control group utilized behavioral therapy based on applied behavior analysis (ABA) [early intensive behavioral intervention (EIBI)]. This study primarily utilized the Social Responsiveness Scale (SRS) to evaluate the social performance of autistic children prior to and after the intervention. Results: Fifty-five participants were recruited and analyzed, the experimental group (n=29; mild to moderate n=18, severe n=11) and the control group (n=26; mild to moderate n=15, severe n=11). After the intervention, the experimental group's SRS score fell significantly more than the control group's (t=-3.918, P=0.000), d=-1.043; the mild to moderate subgroup experienced the same situation (H=17.811, P=0.009), d=-1.642. At the same time, the decline in social communication scores was significantly greater in the experimental group compared to the control group (t=-3.869, P=0.000), and the 95% confidence interval was -10.067 to -3.193. The social motivation of the mild-to-moderate subgroup of the experimental group (H=16.894, P=0.011), -3.000 (25th percentile, 75th percentile: -3.000, 0.000), and the behavioral patterns of autism (H=18.150, P=0.006), -3.000 (25th percentile, 75th percentile: -5.000, 0.000), the decreased value was significantly larger. Conclusions: PMI therapy can increase social motivation in children with mild to moderate ASD, minimize undesirable behavior patterns, effectively improve overall social skills and enhance effective social communication with others. Trial registration: Chinese Clinical Trial Registry ChiCTR2100049185.
... 3) A inserção da própria população autista na escolha sobre temas de pesquisa e efetividade de intervenções: existem relatos de más-práticas com a população autista feitas por supostos analistas do comportamento (e.g., Kupferstein, 2018). Que práticas têm sido consideradas ineficazes ou danosas para esses indivíduos? ...
Article
Full-text available
Uma das formas de tratamento baseada em evidências para pessoas autistas é a Análise do Comportamento Aplicada (ABA), reconhecida pela sua eficácia e validade científica. Entretanto, muitas pesquisas em ABA têm se focado em intervenções com crianças. Assim, o objetivo deste trabalho é realizar um ensaio problematizando o baixo número de estudos com adultos e mulheres autistas, com foco na realidade brasileira, além da tendência de não incluir os próprios autistas nas decisões de pesquisa e intervenção. Constatou-se que, de fato, a quantidade de estudos em ABA com mulheres e adultos é escassa. Também se evidenciou que a população autista não tem sido consultada no planejamento e avaliação de pesquisas e intervenções. Sugere-se, entre outras coisas, a proposição de estudos sobre clínica analítico-comportamental no atendimento de mulheres e adultos autistas e a inclusão de autistas na escolha dos temas de pesquisa, assim como na definição de metas e na avaliação da eficácia das intervenções. Por fim, sugerimos também que a ética se torne um aspecto central nos cursos e discussões sobre a ABA ao autismo.
... However, an increasing number of reports find that autistic individuals have negative experiences of ABA treatments [67,68]. A recent study found that nearly half of autistic adults who had been exposed to ABA interventions met the diagnostic criteria for post-traumatic stress disorder [69]. ...
Article
Full-text available
Purpose: Rehabilitation science has, for years, endorsed a connection between quantitative research and the philosophical assumptions of positivism. These assumptions can limit the scope of rehabilitation research, particularly in relation to matters of equity, diversity, and inclusivity. As our field moves toward a greater focus on inclusivity in research design and patient-centred care, it is imperative that we reconsider the theoretical foundations of rehabilitation research and practice. Methods: We provide an analysis of positivism on equity, diversity, and inclusivity within quantitative rehabilitation research, using the Participant Intervention Comparison Outcome (PICO) model to provide structure for the resultant discussion and recommendations. Results: Our analysis reveals that there are significant limitations and ethical concerns to engaging in positivism as the primary paradigm for quantitative rehabilitation research. We argue that decoupling of positivism and quantitative research methods may be warranted. Conclusions: Equitable and inclusive rehabilitation research requires the researcher to consider variables which are neglected in the positivist paradigm. We argue that critical theory can equip researchers with a lens to better address injustices within rehabilitation research. We provide a series of recommendations for researchers to engage critical theory at each stage of the PICO model of clinical trials.IMPLICATIONS FOR REHABILITATIONCommon assumptions in quantitative rehabilitation research (i.e., positivism) can limit the utility of research findings to rehabilitation patients.Equitable, diverse, and inclusive participant samples in research better reflect the diversity of real world rehabilitation patients, helping us better serve these populations.Critical theory can help researchers and clinicians identify and avoid interventions that may cause harm to rehabilitation patients.Research and practice that prioritize concepts of "normalcy" (i.e., "normal gait," "normal behaviours") may perpetuate negative concepts of disability and further marginalize the individuals that our interventions aim to serve.
Article
The Autistic community values neurodiversity-positive approaches rather than behavioral interventions for Autistic children; however, little is known about what that would look like in occupational therapy. Frequently, researchers seek parent perspectives for understanding Autistic children’s preferences, while to date insufficient attention has been paid to Autistic adults as valuable informants on the Autistic experience of Autistic children. The objective of the study was to understand Autistic adult perspectives on pediatric occupational therapy for Autistic children. We sought and thematically analyzed data from a large Facebook group and an occupational therapy podcast on Autistic values, needs, and experiences in pediatric occupational therapy. Participants described wanting therapy that supported Autistic identities rather than trying to “fix” children, changing environments or tasks to promote participation, and setting goals that address self-advocacy and autonomy. Occupational therapy practitioners should critically reflect on their practice’s alignment with Autistic values and start to shift their practice as needed.
Article
Full-text available
Evaluation of the rehabilitation efficacy may be an essential indicator of its further implementa-tion and planning. The research aim is to examine whether the estimation of EEG correlates of auditory-verbal processing in a child with overlapping autism spectrum disorder (ASD) and specific language impairment (SLI) symptoms may be a predictor of the treatment efficacy in conditions when behavioral tests do not show improvement during the time course. The pro-spective case report reports follow-up results in a child aged 36 to 66 months. During continuous integrative therapy, autism risk index, cognitive, speech-language, sensory, and EEG correlates of auditory-verbal information processing are recorded in six test periods, and their mutual inter-relation was analyzed. The obtained results show a high statistically significant correlation of all observed functions with EEG correlates related to the difference between the average mean values of theta rhythm in the left (F1, F3, F7) and right (F2, F4, F8) frontal region. The temporal dynamics of the examined processes point to the consistency of the evaluated functions in-creasing with a time's flow. These findings indicate that EEG correlates of auditory-verbal pro-cessing may be used to diagnose treatment efficacy in children with overlapping ASD and SLI. Keywords: EEG correlates, auditory-verbal processing, ASD, SLI, integrative therapy, treatment efficacy
Article
This manuscript provides a comprehensive overview of the impact of applied behavior analysis (ABA) on children and youth with autism spectrum disorders (ASD). Seven online databases and identified systematic reviews were searched for published, peer-reviewed, English-language studies examining the impact of ABA on health outcomes. Measured outcomes were classified into eight categories: cognitive, language, social/communication, problem behavior, adaptive behavior, emotional, autism symptoms, and quality of life (QoL) outcomes. Improvements were observed across seven of the eight outcome measures. There were no included studies that measured subject QoL. Moreover, of 770 included study records, only 32 (4%) assessed ABA impact, had a comparison to a control or other intervention, and did not rely on mastery of specific skills to mark improvement. Results reinforce the need for large-scale prospective studies that compare ABA with other non-ABA interventions and include measurements of subject QoL to provide policy makers with valuable information on the impacts of ABA and other existing and emerging interventions.
Article
Full-text available
To gather information about the functional behavior assessment (FBA) methods behavior analysts use in practice, we sent a web-based survey to 12,431 behavior analysts certified by the Behavior Analyst Certification Board. Ultimately, 724 surveys were returned, with the results suggesting that most respondents regularly use FBA methods, especially descriptive assessments. Moreover, the data suggest that the majority of students are being formally taught about the various FBA methods and that educators are emphasizing the range of FBA methods in their teaching. However, less than half of the respondents reported using functional analyses in practice, although many considered descriptive assessments and functional analyses to be the most useful FBA methods. Most respondents reported using informant and descriptive assessments more frequently than functional analyses, and a majority of respondents indicated that they "never" or "almost never" used functional analyses to identify the function of behavior.
Article
Full-text available
Magnetic resonance spectroscopy (MRS) from voxels placed in the left anterior cingulate cortex (ACC) was measured from 14 boys with Autism Spectrum Disorder (ASD) and 24 gender and age-matched typically developing (TD) control group. Our main aims were to compare the concentration of γ-aminobutyric acid (GABA) between the two groups, and to investigate the relationship between brain metabolites and autism symptom severity in the ASD group. We did find a significant negative correlation in the ASD group between Autism Spectrum Screening Questionnaire (ASSQ) and GABA+/Cr, which may imply that severity of symptoms in ASD is associated with differences in the level of GABA in the brain, supporting the excitatory/inhibitory (E/I) imbalance theory. However we did not find a significant difference between the two groups in GABA levels.
Article
Full-text available
This article considers the value of intergenerational and specifically, grandparental support, in the management of adaptive tasks posed by raising a young child with autism. The tasks addressed range from accessing early intervention to enhancing family social functioning. We note unique social, financial, and health-related stressors faced by families of children with autism. We outline an innovative, stress theory-based framework, the Autism Proactive Intergenerational Adaptation (APIA) Model, which delineates the role of grandparents in contributing to family adaptation to the stresses of raising a child with autism. We focus on proactive family coping strategies in building resilience and ameliorating the adverse impact of stressors on quality of life (QOL) for individual family members and for the family unit. We discuss barriers and facilitators of intergenerational alliances involving grandparental participation and support.
Article
Full-text available
Traumatic childhood events are associated with a wide range of negative physical, psychological and adaptive outcomes over the life course and are one of the few identifiable causes of psychiatric illness. Children with autism spectrum disorder (ASD) may be at increased risk for both encountering traumatic events and developing traumatic sequelae; however, this topic has been understudied. This review considers the rationale for examining traumatic events and related symptomology in individuals with ASD and summarizes the limited research on this topic. A conceptual framework for understanding the interplay of ASD, trauma and traumatic sequelae is proposed and recommendations for future research presented.
Article
Full-text available
This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well.
Article
Full-text available
Background: The Conners' Adult ADHD Rating Scale (CAARS) was designed to assess the manifestations of ADHD in adults. Prior factor analyses suggested a 4-factor structure for the CAARS, includingdimensions related to Inattention/Cognitive Problems, Hyperactivity/Restlessness, Impulsivity/Emotional Liability, and Problems with Self-Concept. Method: The internal consistency, test-retest reliability, concurrent validity, criterion validity, and diagnostic utility for the CAARS were examined. Results: Coefficient alphas ranged from .86 to .92. Median test-retest reliability for the four factors was .89. Al/ four CAARS factors correlated significantly with scores from an established measure used in the evaluation of ADHD in adults. Criterion validity was assessed on the basis of comparisons of matched samples with and without ADHD. Sensitivity and specificity were high, with an overall diagnostic efficiency rate of 85%. Conclusion: The CAARS provides researchers and clinicians with a carefully constructed and psychometrically sound scale for the evaluation of current ADHD symptomatology in adults.
Article
This research compared the efficacy of two parenting interventions that vary according to the number and the nature of variables in reducing preschoolers' externalizing behavior (EB). The goal was to identify which parenting intervention format (one-variable versus two-variable) caused higher behavioral adjustment in children. The first was a one-variable intervention manipulating parental self-efficacy beliefs. The second was a two-variable intervention manipulating both parents' self-efficacy beliefs and emotion coaching practices. The two interventions shared exactly the same design, consisting of eight parent group sessions. Effect on children's EB and observed behaviors were evaluated through a multi-method assessment at three points (pre-test, post-test and follow-up). The results highlighted that compared to the waitlist condition, the two intervention formats tended to cause a significant reduction in children's EB reported by their parent. However, the one-variable intervention was found to lead to a greater decrease in children's EB at follow-up. The opposite was reported for children's observed behavior, which was improved to a greater extent in the two-variable intervention at post-test and follow-up. The results illustrated that interventions' format cannot be considered as purely interchangeable since their impact on children's behavior modification is different. The results are discussed for their research and clinical implications.
Article
Eye movement desensitization and reprocessing (EMDR) has demonstrated efficacy in the treatment of posttraumatic stress disorder (PTSD). This case demonstrates the successful use of EMDR for the treatment of PTSD in a patient with Asperger's disorder and examines potential pitfalls both in detecting and treating PTSD in patients with autism spectrum disorders. Our patient was a 21-year-old female with a diagnosis of Asperger's disorder and multiple traumas stemming primarily from physical abuse at the hands of her peers in school. Treatment was provided in an accelerated format, being provided 3 days a week for approximately 3 weeks leaving at least 1 day in between sessions. After receiving 8 EMDR sessions, her scores improved on the Posttraumatic Checklist with effects maintained at 8-month follow-up.