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Engaging with Autistic Perspectives on ABA: Response to Leaf et al., 2021

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Abstract

In this commentary, we respond to a recent article published by Leaf and colleagues (2021), entitled "Concerns About ABA-Based Intervention: An Evaluation and Recommendations". In their article, the authors attempt to address concerns raised by autistic people about ABA-based interventions. We argue that they only superficially engage with these important issues, and fall short of supporting neurodiversity, despite their intention to do so. We discuss issues related to biased claims of effectiveness of ABA, the potential for ABA-based interventions to cause harm, the reliance on past human rights abuses to justify current potential for harm, a lack of empirical support related to intervention intensity recommended by ABA provider groups, and the rigidity of procedures used to achieve therapist-determined goals.
RUNNING HEAD: Response to Leaf et al., 2021 1
Engaging with Autistic Perspectives on ABA: Response to Leaf et al., 2021
Kristen Bottema-Beutel
Lynch School of Education and Human Development
Georgia Pavlopoulou
Department of Psychology and Human Development, Institute of Education,
University College London, Anna Freud National Centre for Children and
Families
Corresponding Author: Kristen Bottema-Beutel
Email: kristen.bottema-beutel@bc.edu
Compliance with Ethical Standards: Production of this paper did not involve human or animal
participants.
Disclosure of Potential Conflicts of Interest: Kristen Bottema-Beutel has received speaker fees
in the amount of $750 for a talk on topics discussed in this commentary, including research
quality, adverse event reporting, and conflicts of interest. She also receives royalties for a book
on early intervention for autistic children, published by Springer. She teaches coursework related
to autism interventions which covers topics similar to those discussed in this commentary.
Georgia Pavlopoulou teaches short courses and PG courses that cover autism interventions. She
has received funding from Medical Research Council- United Kingdom Research and Innovation
as a co-applicant in a research project which aims to understand the role of emotional regulation
in depression with and for adolescents with a diagnosis of autism and/or ADHD.
Author Note
Kristen Bottema-Beutel is an Associate Professor of Special Education in the Lynch School of
Education at Boston College. Georgia Pavlopoulou is a Lecturer in Psychology and Human
Development in the Institute of Education at University College, London.
We would like to thank Richard Woods for initiating this response.
Response to Leaf et al., 2021 2
Response to Leaf et al., 2021 3
Abstract
In this commentary, we respond to a recent article published by Leaf and colleagues (2021),
entitled “Concerns About ABA-Based Intervention: An Evaluation and Recommendations”. In
their article, the authors attempt to address concerns raised by autistic people about ABA-based
interventions. We argue that they only superficially engage with these important issues, and fall
short of supporting neurodiversity, despite their intention to do so. We discuss issues related to
biased claims of effectiveness of ABA, the potential for ABA-based interventions to cause harm,
the reliance on past human rights abuses to justify current potential for harm, a lack of empirical
support related to intervention intensity recommended by ABA provider groups, and the rigidity
of procedures used to achieve therapist-determined goals.
Keywords: Applied behavior analysis, autism, neurodiversity, adverse events,
intervention efficacy, autistic perspectives
Response to Leaf et al., 2021 4
Introduction
Recently, Leaf and colleagues (2021) published a commentary aimed at addressing
concerns raised by autistic people about ABA-based interventions, and proposing potential paths
forward for ABA researchers and practitioners. We applaud the authors for seeking out and
engaging with the work of autistic people, and wish to see more researchers and professionals
make this effort in the future. However, while the authors claim to support the neurodiversity
paradigm and to value the input of autistic people, we argue that they instead dismiss reasonable
concerns with partial and misleading evidence. Below, we discuss several major claims made by
the authors, and indicate how their responses fall short of adequately engaging with autistic
people’s critiques of ABA.
Biased Claims of Effectiveness
Much of the commentary hinges on the assertion that ABA-based interventions have
strong empirical support, citing a “plethora” of evidence. However, recent reviews that account
for adherence to quality standards have found no such evidence (Rodgers et al., 2021; Sandbank
et al., 2020). Over its more than 50-year history, behavioral researchers have produced too few
randomized controlled trials of ABA-based intervention for autistic children that adhere to basic
quality standards (e.g., adequate randomization procedures, masked assessors) to permit
statistical synthesis of findings (Sandbank et al., 2020). While some organizations do categorize
ABA as an ‘evidence-based practice’, we note that there is little agreement on the definition of
this term, and that the amount and quality of evidence required for such a designation is
exceedingly low. For example, the National Autism Center Report (produced by the May
Institute, an organization that also provides ABA services) assigns this designation based on the
number of studies that meet only minimal quality indicators, and provide no assessment of the
Response to Leaf et al., 2021 5
quality of the outcome variable. As such, intervention studies with limited internal validity,
and/or that show narrow and temporary change on outcome measures that were not subject to
construct validation are deemed ‘evidence-based’ (Sandbank, Chow, Bottema-Beutel et al.,
2021).
Other research has found that a majority of ABA-based intervention studies with autistic
participants are conducted by researchers who are also ABA clinical providers, and this conflict
of interest (COI) is disclosed in less than 2% of published research reports (Bottema-Beutel &
Crowley, 2021). It is illustrative that, despite the fact that at least five of the commentary authors
are employed by an agency that provides training to ABA clinicians, the original COI disclosure
statement reads “None of the authors have any conflict of interests with this commentary”.
Following an inquiry to the JADD editor by a fellow researcher, the statement was revised to
acknowledge author affiliations with the Autism Partnership Foundation (Leaf et al., 2021).
Notably, the revised statement still fails to disclose other significant COIs, such as co-author
Lorri Unumb’s role as CEO of the Council of Autism Service Providers, an organization that
advocates for ABA practitioners. The high prevalence of COIs among ABA researchers and the
failure to properly account for them, coupled with an evidence base lacking in quality, leaves us
skeptical of the trustworthiness of Leaf and colleagues’ conclusions regarding the effectiveness
of ABA on meaningful outcomes for autistic people.
Potential for ABA-based Interventions to Cause Harm
Several sections of the commentary are devoted to addressing autistic people’s concerns
that ABA interventions are abusive, harmful, and associated with negative long-term outcomes.
To minimize these perceptions, Leaf and colleagues clarify that Lovaas, who advocated
shocking, slapping, and convincing autistic children that he would kill them (Chance, 1974),
Response to Leaf et al., 2021 6
only used aversive procedures in response to self-injurious behavior. They also cite a lack of
evidence documenting short or long term adverse effects of any ABA procedures, including
aversives and extinction protocols. However, as Dawson and Fletcher-Watson note (2021), even
procedures that are not traditionally associated with abuse, such as the provision of food
reinforcers and planned ignoring, have the potential to cause long-term harm. A recent review of
adverse event reporting supports the authors’ assertions regarding the scarcity of evidence;
adverse events are rarely systematically monitored or reported in autism intervention literature
(Bottema-Beutel et al., 2021). However, this lack of reporting is a serious ethical violation on the
part of autism researchers. We find it striking that this oversight would be used to minimize
concerns regarding potential harms rather than be taken as an acknowledgement that there is
little information available to make an informed choice regarding whether participation in ABA
intervention is worth the risk of harm given purported benefits (which, as argued above, have not
been adequately established).
It is unclear to us how autistic people, especially autistic non-researchers, would be able
to produce the evidence the authors require in order to take their concerns about ABA-related
harms seriously. Although Leaf and colleagues do call for increased reporting of adverse events
in primary ABA research, they also direct practitioners to be “compassionately skeptical” when
faced with claims from autistic people about potential long-term negative outcomes. We find this
egregious. Not only is there a pervasive lack of basic ethical compliance in regards to monitoring
and reporting adverse events, the authors minimize the only form of evidence autistic non-
researchers could be reasonably expected to produce given the failure of ABA researchers; their
own experiences.
Response to Leaf et al., 2021 7
Leaf and colleagues also reference the scarcity with which extreme aversives are
currently used to modify behavior, as a means to downplay the seriousness of this practice. In
fact, within days of their commentary being published, the Federal Drug Administration in the
US reversed a ban on electric shock procedures, which have been deployed by staff at the Judge
Rotenberg Center in Canton, MA to modify the behavior of disabled people (Pierson, 2021). The
ban reversal means that what is essentially torture will continue to be acceptable procedures for
the people who live at the center, many of whom are autistic. We think it is noteworthy that the
Association for Behavior Analysis International (ABAI), an ABA membership organization that
disseminates ABA journals and accredits BCBA training programs, provides a yearly platform
for Judge Rotenberg Center-affiliated professionals to defend and promote the use of electric
shocks at their annual conference. Even if Leaf and colleagues do not condone the use of shocks
as part of behavioral therapy (their position is unclear), the ABA community writ large has done
little to stop it.
Historical Mistreatment of Autistic People Does not Justify Current Mistreatment
The authors purport that ABA-based interventions have improved the quality of life for
autistic people. However, we are unable to locate any behaviorally-based experimental studies
that measure autistic people’s quality of life as an intervention outcome, despite calls to do so
(Schwartz & Kelly, 2021). Rather than relying on empirical evidence, the author’s assertion rests
on a comparison of current conditions for autistic people to a long history of human rights
abuses, stating that “...[autistic] children were literally dying or experiencing 24 hour restraint to
keep them from harming themselves, and many were destined to spend their entire lives in an
institution (Koegel, 2015)”. The authors frame these conditions as an inevitable circumstance for
autistic people (e.g., they were “destined”), without providing historical details regarding links
Response to Leaf et al., 2021 8
between medicalized perceptions of autism and ableist ideologies that made institutionalization
and abuse commonplace. Lovaas’ scholarship was very much aligned with medical-model
conceptualizations of autism (Schwartz & Kelly, 2021) that are still referenced in arguments for
institutionalization. In fact, there are multiple residential institutions in operation today that
market themselves as ABA providers and are run by applied behavior analysts, such as the
aforementioned Judge Rotenberg Center, the New England Center for Children, and the May
Institute. Institutionalization remains an outcome for autistic people at least in part due to
behavioral treatment approaches that occur in such settings.
While the authors credit Lovaas’ work in allowing for autistic people to live outside
institutions, the history of deinstitutionalization involves a complicated set of factors including
changing ideologies that pre-dated widespread availability of ABA, including parent- and autistic
self- advocacy, and legislative changes- not simply the availability of services that could be
provided in the home (Eyal, 2013). Whatever the historical role of ABA in deinstitutionalization
of autsitic people, the occurrence of past abuses does not absolve autism professionals-- of any
disciplinary orientation-- from monitoring, understanding, and minimizing harms that can be
linked to their current practices.
Lack of Support for Intervention Intensity
The authors address concerns about the intensity of ABA-based interventions
recommended and provided to young autistic children, by construing them as a misconception;
40 hours per week of ABA intervention is not provided to all autistic children who receive ABA
services. However, the autistic author of the piece articulating this concern (Lynch, 2019)
references a quote from Lovaas himself setting the ‘standard’ dosage at 40 hours per week. The
Lovaas Center, which advertises itself as a continuation of Lovaas’ work, (mis)states on its
Response to Leaf et al., 2021 9
website: “Empirical research has shown that 35-40 hours per week of one-to-one instruction is
the most effective strategy in improving outcomes” (The Lovaas Center, n.d.). Similarly, the
Behavior Analysis Certification Board promotes up to 40 hours per week of ABA intervention in
its guidelines and refers to this dosage as common and necessary: “… intensity levels of 30-40
hours per week are common and necessary to achieve meaningful improvements in a large
number of treatment targets” (Behavior Analysis Certification Board, 2019). Even if not all
autistic children receive 40 hours per week of ABA-therapy, this level of intensity is certainly
promoted by ABA organizations, and likely provided to many autistic children despite little
supporting evidence (Pellecchia, Iadarola, & Stahmer, 2019). While Leaf and colleagues cite
several meta-analyses as evidence for a relationship between intervention intensity and child
outcomes, these meta-analyses include low-quality studies that are subject to a variety of biases
(e.g., the Edevik et al., 2009 meta-analysis cited by the authors included only a single RCT).
Primary studies and quality-controlled meta-analyses that statistically test intensity as a
moderator of outcomes have not found a relationship between intervention intensity and child
outcomes (Choi et al., 2021; Sandbank, Bottema-Beutel, & Woynaroski, 2021; Rogers et al.,
2021).
Goal Selection and Attainment
Autistic people have voiced concerns that the goals pursued in ABA therapy encourage
autistic people to mask behavioral proclivities that are either benign, and/or serve important
functions (e.g., rocking or flapping for self-regulation) (Dawson & Fletcher-Watson, 2021). Leaf
and colleagues argue that ABA therapists select goals that are meaningful to society, and prepare
autistic people to live in an ableist world. We counter that autistic people have historically been
excluded from social processes that determine what is “meaningful to society”, and therapies that
Response to Leaf et al., 2021 10
promote extinguishing autistic behaviors only perpetuate their exclusion. Pathologizing autistic
behavior as inherently in need of treatment produces and maintains ableist conceptualizations
regarding social acceptability (Goffman, 1963), and encourages parents to focus on ‘fixing’ their
autistic child rather than adopting acceptance and support models to adapt to life post-diagnosis.
In addition, many autistic people report that masking their behavior is accompanied by anxiety
and stress (Cage & Troxell-Whitman, 2019), suggesting that there is a cost to suppressing
autistic traits that is not counterbalanced by social inclusion (Mandy, 2019).
Concerns have also been raised about the rigidity of procedures used to achieve goals
developed in ABA programs, and whether or not this reflects an optimal learning environment
for autistic people (Nader et al., 2021). Strangely, Leaf and colleagues argue that ABA therapy
does not use rigid procedures, and that Lovaas himself decried the use of protocols. However,
fidelity checklists (i.e., protocols) are standard components of ABA experiments and case reports
(Ledford & Gast, 2018), and a variety of common ABA techniques, such as discrete trial training
(DTT), require the use of rigid protocols. Even if ABA therapists are encouraged to exercise
creativity and improvisation in their work, as Leaf and colleagues claim, autistic children who
participate in ABA are rarely granted such freedom. Instead, ‘correct’ responses are pre-
determined, rigidly operationalized, prompted, and reinforced by the therapist-- despite the fact
that autistic people have shown success in designing their own strategies to improve health
outcomes (Pavlopoulou, 2020). Some ABA proponents do advocate for a revised version of
ABA that combines behavioral techniques with developmental principles, and child-led learning
opportunities that are less rigid than traditional ABA techniques (Schriebman et al., 2015).
However, a survey of ABA professionals found that very few respondents were able to define
Response to Leaf et al., 2021 11
these practices, and many considered them outside the scope of ABA service provision
(Hampton & Sandbank, 2021).
Conclusion
In summation, although the authors claim at the outset of their commentary that they are
in support of the neurodiversity movement and wish to address concerns made by autistic people
in good faith, we feel that they have fallen far short of this goal. In order for a productive path
forward, ABA researchers and providers need to more seriously consider: (1) autistic people’s
concerns of harm based on their experiences participating in ABA, (2) rigorous scholarship that
counters claims of ABA’s effectiveness, (3) the ableist roots of ABA as a clinical practice, and
(4) the failings of ABA researchers who have not monitored or reported adverse events, and
produced scholarship with unacknowledged conflicts of interest.
Response to Leaf et al., 2021 12
References
Behavior Analysis Certification Board (February, 2019). Clarifications regarding applied
behavior analysis treatment of autism spectrum disorder: Practice guidelines for
healthcare funders and managers (2nd ed.).
https://www.bacb.com/wp-content/uploads/2020/05/Clarifications_ASD_Practice_Guidel
ines_2nd_ed.pdf Accessed September 25, 2021.
Bottema-Beutel, K., & Crowley, S. (2021). Pervasive undisclosed conflicts of interest in applied
behavior analysis autism literature. Frontiers in Psychology, 12, 1631.
Bottema-Beutel, K., Crowley, S., Sandbank, M., & Woynaroski, T. G. (2021). Adverse event
reporting in intervention research for young autistic children. Autism, 25(2), 322-335.
Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of
camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 49(5),
1899-1911.
Chance, P. (1974). A conversation with Ivar Lovaas. Psychology Today, 7(8), 76-84.
Choi, K. R., Bhakta, B., Knight, E. A., Becerra-Culqui, T. A., Gahre, T. L., Zima, B., &
Coleman, K. J. (2021). Patient Outcomes After Applied Behavior Analysis for Autism
Spectrum Disorder. Journal of developmental and behavioral pediatrics : JDBP,
10.1097/DBP.0000000000000995. Advance online publication.
https://doi.org/10.1097/DBP.0000000000000995
Dawson, M., & Fletcher-Watson, S. (2021). When autism researchers disregard harms: A
commentary. Autism, 13623613211031403.
Eyal, G. (2013). For a sociology of expertise: The social origins of the autism epidemic.
American Journal of Sociology, 118(4), 863-907.
Response to Leaf et al., 2021 13
Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Simon and Schuster.
Hampton, L. H., & Sandbank, M. P. (2021). Keeping up with the evidence base: Survey of
behavior professionals about Naturalistic Developmental Behavioral Interventions.
Autism. https://doi.org/10.1177/13623613211035233
Koegel, R. L. (2015). Autism, ABA, and Pivotal Response Treatment. Symposium presented at
the 9th Annual Association for Behavior Analysis Autism Conference.
Leaf, J.B., Cihon, J.H., Leaf, R., McEachin, J., Liu, N., Russel, N., Unumb, L., Shapiro, S., &
Khosrowshahi, D. (2021). Correction to: Concerns about ABA-based intervention: An
evaluation and recommendations. Journal of Autism and Developmental Disorders.
Advance Online Publication.
Ledford, J.R., & Gast, D.L. (2018). Single case research methodology, third edition. Routledge.
Lynch, C.L. (2019, March 28). Invisible abuse: ABA and the things only autistic people can see.
Https://neuroclastic.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-
people-can-see/
Mandy, W. (2019). Social camouflaging in autism: Is it time to lose the mask? Autism, 23(8),
1879–1881.
Nader, A.-M., Tullo, D., Bouchard, V., Degré-Pelletier, J., Bertone, A., Dawson, M., &
Soulières, I. (2021). Category learning in autism: Are some situations better than others?
Journal of Experimental Psychology: General. Advance online publication.
http://dx.doi.org/10.1037/xge0001092
Pavlopoulou, G. (2020). A good night’s sleep: Learning about sleep from autistic adolescents’
personal accounts. Frontiers of Psychology. 11:583868. doi: 10.3389/fpsyg.2020.583868
Response to Leaf et al., 2021 14
Pellecchia, M., Iadarola, S., & Stahmer, A. C. (2019). How meaningful is more? Considerations
regarding intensity in early intensive behavioral intervention. Autism, 23(5), 1075–1078.
https://doi.org/10.1177/1362361319854844
Pierson, B. (July 7, 2021). D.C. Circuit overturns FDA ban on shock device for disabled
students. Reuters. https://www.reuters.com/legal/litigation/dc-circuit-overturns-fda-ban-
shock-device-disabled-students-2021-07-06/. Accessed September 25, 2021.
Rodgers, M., Simmonds, M., Marshall, D., Hodgson, R., Stewart, L. A., Rai, D., ... & Couteur,
A. L. (2021). Intensive behavioural interventions based on applied behaviour analysis for
young children with autism: An international collaborative individual participant data
meta-analysis. Autism, 25(4), 1137-1153.
Rogers, S. J., Yoder, P., Estes, A., Warren, Z., McEachin, J., Munson, J., ... & Whelan, F.
(2021). A multisite randomized controlled trial comparing the effects of intervention
intensity and intervention style on outcomes for young children with autism. Journal of
the American Academy of Child & Adolescent Psychiatry, 60(6), 710-722.
Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., ... &
Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of
young children. Psychological Bulletin, 146(1), 1-29.
Sandbank, M., Bottema-Beutel, K., & Woynaroski, T. (2020). Intervention recommendations for
children with autism in light of a changing evidence base. JAMA pediatrics.
Sandbank, M., Chow, J., Bottema‐Beutel, K., & Woynaroski, T. (2021). Evaluating evidence‐
based practice in light of the boundedness and proximity of outcomes: Capturing the
scope of change. Autism Research.
Response to Leaf et al., 2021 15
Schwartz, I. S., & Kelly, E. M. (2021). Quality of life for people with disabilities: Why applied
behavior analysts should consider this a primary dependent variable. Research and
Practice for Persons with Severe Disabilities, 46(3), 159–172.
The Lovaas Center (n.d.). Lovaas ABA treatment for autism. http://thelovaascenter.com/about-
us/lovaas-aba-treatment-for-autism/ Accessed September 25, 2021.
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