The AMA On ABA
The American Medical Association’s stance on Applied Behavioural Analysis
The American Medical Association has received a proposal for the removal of AMA Support for Applied Behavior Analysis (ABA). This is very exciting news.
ABA has been pushed as the “gold standard” of treatment for Autism in children for decades, despite overwhelming anecdotal and objective evidence demonstrating the numerous risks and harms of coercive behavioural interventions.
It’s wonderful to see up and coming physicians speak up on this very important issue which has been ignored for way too long.
The full AMA House of Delegates Handbook is over 1500 pages long, so I won’t be able to summarize its contents in an article, but I will highlight the salient arguments brought forth by the Medical Student Section of the AMA (yay med students!).
AMA’s June 2023 Annual Meeting
The American Medical Association (AMA)
The full resolution proposal is outlined in the AMA House of Delegates Handbook (pp 1187–1189). I will provide a summary of the most relevant points, but have cited the full document for those who wish to read further.
- ABA was conceived in 1961 by Dr. Ole Ivar Lovaas to condition neurotypical behaviors in children he viewed as “incomplete humans”
- Desired behavior is often defined by the adult or behaviorist without input or requirement of consent from the child and may include non-harmful stimming or coping behaviors
- ABA uses behavior modification techniques to eliminate behaviors deemed undesirable
- ABA practices are historically based in abuse such as holding autistic children’s communication hostage through the use of their devices as leverage, and denying basic rights such as food and toileting privileges
- Modern ABA still abides by the founding principle of making a child appear “normal” or “indistinguishable from one’s peers”, which serves to separate the humanity of the individual with autism from desired behaviors [emphasis added]
- A 2018 study found that Adults with autism who have received ABA are more prone to suicide
- ABA has been repeatedly linked to Post Traumatic Stress Disorder (PTSD), with 46% of 460 ABA participants meeting the diagnostic threshold for PTSD in an online survey
- Adults with autism have been continuously outspoken about the trauma incurred by ABA practices experienced in their childhood
- A 2012 literature review found the evidence base for services for adults with an ASD to be underdeveloped
- A 2018 Cochrane review recommend further research after reporting very weak evidence in support of ABA
- An informal online community survey found that 71% of adults with autism responded “disagree” or “strongly disagree” to the statement “Generally speaking, I support ABA therapy for autistic children” [emphasis added]
- A 2020 Department of Defense report demonstrated a lack of correlation between improvement in symptoms and hours of direct ABA services
- A 2021 study on conflicts of interest (COIs) in autism early intervention research found COIs to be prevalent and under-reported, with 70% of studies containing a conflict of interest and less than 6% declaring them as such
- Current research supports alternatives to ABA such as the Developmental, Individual Differences, and Relationship-based (DIRTM) program, the PLAY Project, individualized Early Social Interaction (ESI) and, Social Communication, Emotional Regulation, and Transactional Support (SCERTSTM)
Concluding statement and proposal
Whereas current AMA policy supports the use of ABA through its advocation of coverage of ABA and the evidence-based treatment for autism and fails to recognize its harms or controversial nature within the community at large [emphasis added]; therefore be it
- RESOLVED that our American Medical Association support research towards the evaluation and the development of interventions and programs for autistic individuals (New HOD Policy); and be it further
- RESOLVED that our AMA work with relevant stakeholders to advocate for a comprehensive spectrum of primary and specialty care that recognizes the diversity and personhood of individuals who are neurodivergent, including people with autism (Directive to Take Action); and be it further
- RESOLVED that our AMA amend Policy H-185.921 “Standardizing Coverage of Applied Behavioral Analysis Therapy for Persons with Autism Spectrum Disorder” by addition and deletion as follows:
Previous wording:
“Standardizing Coverage of Applied Behavioural Analysts Therapy for Persons with Autism Spectrum Disorder, H-185.921:
Our AMA supports coverage and reimbursement for evidence-based treatment of services for Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy.”
**Proposed modified version:
“Standardizing Coverage for Persons with Autism Spectrum Disorder, H-185.921:
Our AMA supports coverage and reimbursement for evidence-based services for Autism Spectrum Disorder.”
A brief pause for a self-congratulatory statement
In doing my research for this article, I was utterly shocked and speechless (definitely weird for me!) when I discovered that…
My work was CITED IN THIS PROPOSAL! This is amazing. I am overjoyed that my work is, in some very small part, helping to fight the harms of ABA.
I shall now return to our originally scheduled programming.
February 2023: PBIS is ABA in disguise
A recent report shared by a joint committee on disability matters sought to explore how our United Nations can align disability services with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
Three paragraphs of the report (58–60) cover Applied Behaviour Analysis (ABA) and Positive Behavioural Interventions and Supports (PBIS).
“The Committee heard that autistic people consider ABA and behavioural interventionist therapies to be medicalised and significantly impact their rights.” — The Joint Committee on Disability Matters
There’s no misunderstanding the message and conclusions drawn by this committee.
“…there is evidence to suggest that PBIS risks the same harms as ABA…” — The Joint Committee on Disability Matters
That last sentence is critical.
“Behavioural interventionist therapies are ultimately founded on modifying disabled people’s behaviour to meet goals decided by others; often to conform more closely with neurotypical communication, behaviour and/or norms and therefore the Committee believe cannot uphold the UNCRPD principles of autonomy, dignity, right to identity and freedom from non-consensual or degrading treatment.” — The Joint Committee on Disability Matters
Their report unequivocally denounced behavioural interventions in favour of person-centred, affirming approaches which respect people’s identity and autonomy, such as Speech Language Pathology (SLP) and Occupational Therapy (OT).
What else can we say?
I am really hoping the American Medical Association (AMA) adopts this proposal — and quickly.
If (when!) that happens, I will be cautiously optimistic that the Canadian Medical Association (CMA), along with other institutions (including many of our public school systems), should follow suit and adapt more person-centred programming.
The CMA’s Health Summit is this August (August 17–18, 2023) in Ottawa and online. I hope Canadian healthcare providers will be proposing similar policy amendments to the CMA.
I’m sure it wouldn’t hurt to contact the CMA to share your concerns and desire to see the Canadian Medical Association modernize its highly out-dated policies.
The overwhelming evidence illustrating the many risks and harms of behavioural interventions speaks for itself. I just hope the policy-makers are finally listening.
© Jillian Enright, Neurodiversity MB
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References
American Medical Association. (2023). AMA House Of Delegates Handbook. AMA. [Online].
Bonnello, C. (2018). 11,521 people answered this autism survey. Warning: the results may challenge you. — Autistic Not Weird. Autistic not Weird. Published October 1, 2018. Accessed April 15, 2022. https://autisticnotweird.com/2018survey
Bottema-Beutel, K., & Crowley, S. (2021). Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature. Frontiers in psychology, 12, 676303. https://doi.org/10.3389/fpsyg.2021.676303
Cassidy, S., Bradley, L., Shaw, R., Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular Autism, 9(1), 42. https://doi.org/10.1186/s13229-018-0226-4
Joint Committee on Disability Matters. (2023). Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities. Houses of the Oireachtas. [Online]
Reichow, B., Hume, K., Barton, E. E., & Boyd, B. A. (2018). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). The Cochrane database of systematic reviews, 5(5), CD009260. https://doi.org/10.1002/14651858.CD009260.pub3
Shattuck, P.T., Roux, A.M., Hudson, L.E., Taylor, J.L., Maenner, M.J., Trani, J-F. (2012). Services for Adults with an Autism Spectrum Disorder. The Canadian Journal of Psychiatry, 57(5), 284–291. https://doi.org/10.1177/070674371205700503
The American Medical Association. (2023). AMA House of Delegates Handbook. [Online]
The Department of Defense. (2020). The Department of Defense Comprehensive Autism Care Demonstration Annual Report. The Department of Defense; 35. [Online]
Wong, C., Odom, S.L., Hume, K.A., Cox, A.W., Fettig, A., Kucharczyk, S., Brock, M.E., Plavnick, J.B., Fleury, V.P., Schultz, T.R. (2015). Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder: A Comprehensive Review. Journal of Autism and Developmental Disorders, 45(7), 1951–66. https://doi.org/10.1007/s10803-014-2351-z