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Big ABA News in the US – Autistic Advocates Hopeful
“Standardizing Coverage for Persons with Autism Spectrum Disorder – Our AMA supports coverage and reimbursement for evidence-based services for Autism Spectrum Disorder.”
The above copy is what the American Medical Association (AMA) House of Delegates (HOD) Reference Committee recommended as policy change for H-185.921 at the 2023 HOD Annual Meeting.
The differences between that and the previous policy include the removal of explicit language for coverage of Applied Behavioral Analysis Therapy (ABA), and replacing “treatment of” with “services for” Autism Spectrum Disorder.
While still framing autism within a very medical model (this is the American Medical Association, after all), this change is significant as it reflects the growing professional consensus that ABA, like other compliance-based forms of conversion therapy, causes harm rather than help, and that services make more sense than treatment for their autistic medical patients.
Ref. 706 was brought to the 2023 HOD Annual Meeting by the Medical Student Section, and included pages of citations in support of this proposed policy change. Readers can find Ref. 706 within the (1315 page) meeting packet that is called the House of Delegates Handbook. (See also https://ama-assn.org/hod-business.)
I have included the complete, unedited referendum below here. Please scroll down to check it out – the Medical Student Section did a great job sponsoring this and putting everything together. As a long-time educator, I am not surprised that this important change began with the students.
What is the status of this?
updated November 2023
The ABA lobby has been very hard at work on the interwebs in the latter part of 2023, pushing the SEO gurus to get the pro-ABA blog posts to the top of search results to convince the parents and others who control the spending that ABA is still the way to go, but in fact:
(1) The AMA did remove ABA as explicitly named in their policy, (2) they pluralized treatment to treatments, because there are many options when it comes to autism, and (3) they added the word servicesinto the now amended, official AMA policy regarding health insurance coverage and reimbursement when it comes to autism care and support. (4) They also renamed the policy to be for billing for services for neurodivergent individuals.
Again, this is the AMA and a medical model should not surprise anyone.
At least ABA is no longer named in AMA policy, which should hopefully allow parents, teachers, clinicians and other providers to look more broadly at what services and other supports will best allow autistic people to thrive, rather than immediately beginning a punitive, penalizing, and traumatic lifetime of ABA, as if we don’t know better.
Notice that AMA has not spoken out against ABA. While they have removed ABA from being explicitly named, and they have pluralized treatments and added the word services thus no longer centering ABA, the newly amended policy does nothing to exclude ABA. The amended policy became more inclusive not more exclusive.
The resolution in which the policy change was proposed certainly includes compelling arguments in favor of actively excluding ABA, but the actual policy change that has occured merely takes the ABA name out. This still allows defenders of ABA to claim that ABA is “evidence based” and thus should still be considered among options. An important task for scholars is to disseminate the research that shows how flawed that evidence base is.
This policy change is still a big deal. It is a welcomed and necessary first step within a broader, positive shift away from punitive treatments against autistics, and toward positive supports for autistic children and adults.
The sociologist in me assures the reader that our institutions are nothing if not durable. There will be continued pushback as those who profit from the largely unchallenged acceptance of ABA (such as the providers and educators of ABA) will tend to resist the decentering of what they do.
A decentering and deprioritizing of ABA will not only reduce the trauma inflicted on autistic children, but can give space for more effective, modern support services that aren’t based in compliance, coersion, and trauma.
And this is where professional psychology has at least two key roles to play. The AMA is involved because of medical coding and billing, but the American Psychological Association (APA) has roles because of their mission to apply psychological and prevention science in order to improve lives. Another part of the APA’s purpose is to educate and to make a difference – to use psychology for societal good.
What can psychology do?
We all know that psychology has a history of where psychology got it wrong. From racialized intelligence testing and Eugenics, to pathologizing civil unrest and social protest. The APA has done the work of investigating where psychology has historically got some things wrong, and has even worked out how to apologize and work on making amends for the harm that was caused.
Likewise, we know that ABA is wrong, and that people of color are disproportionately subjected to behavioral interventions. We know that ABA is broadly wrong, not just when used against autistic people, but in any context in which a person with autonomy deserves dignity and to be validated.
Professional psychology as a discipline has at least these two roles here, as I see it:
(1) Align with AMA Policy H-185.921 and remove ABA from any documentation for recommended services for autistic people. We know better and should stop elevating ABA. It is a behavioral intervention that, like other conversion therapies, causes trauma and harm, by psychologically coercing people who function differently to behave as instructed socially. It is cruel, and psychology should be about helping not harming in today’s world.
(2) Educate the public (parents of autistic people, current ABA providers, allied health professionals, physicians) on the role of trauma and what conversion therapies such as ABA do to the individual, and have done historically (in the form of making amends for past wrongs). With this education, highlight some of the alternative, better support pathways for autistic people that do not centralize behavioral compliance at the cost of autistic people’s well-being.
Nothing I say here represents the opinions of any past or present employer or funding source. I, Erika Sanborne, an autistic social researcher, am writing for myself.
July 20, 2023 Update: To the Pro-ABA Psychologists reading this, I reiterate that I am writing as an individual entity. Your emails to my employer, or to my state university email account, are inappropriate. Your correspondence sent to me as a U.S. State employee is recorded, and may also be public record. I will not respond to those unsolicited emails. There is a contact form on this website, which is what you should be using. Or you can click through to the public facebook page for public comment. Please refrain from further unethical communication with me via my employers who are unaffiliated with this blog.
I’m also a population health researcher and data nerd. I’m currently on track to be the oldest person to ever (we think, and I hope) earn a PhD in Sociology from the University of Minnesota. I’m a longtime educator and classroom consultant. I’ve been teaching in the Psychology Department of another state University for two decades, where I have taught mostly Research – Statistics, and Community Psychology.
I still teach one psychology course every spring and fall semester. I have been a voting member of the American Psychological Association (APA) since 2002 (I believe), when I earned my first master’s degree, which was in Community Social Psychology. I’m a member of APA Division 27, the Society for Community Research and Action. (See also: What is Community Psychology? An Interactive Video Explainer.)
I am autistic and ADHD. I’m also disabled and I’m a disabled U.S. military veteran. I’m currently diagnosed with moderate malnutrition due to one of my impairments, and so this article was mostly composed while I typed on a mobile device from the sick bay. I’m queer, gender-nonconforming, White, middle-class and I am happily married.
Autistics Should Set the Autism Agenda
As an autistic social researcher (although I do not specifically research autism), I would like to direct my fellow social scientists to read Autistic Perspectives on the Future of Clinical Autism Research (Pukki et al. 2022). There is invaluable guidance in that invited article, including a call to center autistic people as the real stakeholders when it comes to autism research. As the authors note, right now, the stakeholders are parents, caregivers, and clinicians.
Pukki et al. (2022) also express concern about the overemphasis on behavior in general, beyond the specifically harmful intervention that is ABA. They write that modifying behaviors “should not be the main goal of clinical research or treatment for autistic people of any age. Appearing autistic or acting in typically autistic ways should not be considered an illness. Clinicians need to be aware of the potential mental health risks of ‘camouflaging’ and avoid encouraging or manipulating autistic people to engage in it, even through naturalistic or play-based methods” (p.97).
Pukki et al. go on to disparage ABA and suggest that the “history needs to be openly admitted and the practices clearly renounced. There are other continuing ethical concerns, as well as issues with the evidence base of behavioral approaches more generally” (p.97). And they detail those issues in literature-review style, while inviting psychologists – researchers and clinicians – to be a part of the ethical conversation in autism research and services, and to prioritize varied autistic voices throughout.
So, what say you, psychologists? Can we start supporting autistics?
Pukki, Heta, Jorn Bettin, Avery Grey Outlaw, Joshua Hennessy, Kabie Brook, Martijn Dekker, Mary Doherty, Sebastian CK Shaw, Jo Bervoets and Silke Rudolph. 2022. “Autistic Perspectives on the Future of Clinical Autism Research.” 4(2):93-101. doi: https://doi.org/10.1089/aut.2022.0017.
What can you do to move professional and academic psychology forward for the well-being of autistic people?
Subject: Revision of H-185.921, Removal of AMA Support for Applied Behavior
Referred to: Reference Committee G
Whereas, A 2018 study from the Centers for Disease Control and Prevention (CDC) estimated the prevalence of autism spectrum disorder (ASD) among adults aged 8 years to be 1 in 44 1; and
Whereas, Applied Behavioral Analysis (ABA) is currently the most widely available and commonly used state-funded form of autism therapy in Canada and the United States 2,3;
Whereas, Autism treatment represents a fragmented industry that consists of a mixture of for-profit and nonprofit organizations, with the top nine for-profit chains estimated to have a combined revenue of $547 million and a market value close to $2 billion with future growth expected 4;
Whereas, An ABA software company reports over 3 billion in claims processed annually for about 1,300 practices highlighting the prevalence of ABA use as an intervention for individuals with autism 5;
Whereas, Autism Speaks lists 3,194 centers across the United States who offer ABA therapy as of 2022 6;
Whereas, ABA was conceived in 1961 by Dr. Ole Ivar Lovaas to condition neurotypical behaviors in children he viewed as “incomplete humans” 7,8,9,10;
Whereas, 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 2,8,11,12,13,14;
Whereas, ABA uses behavior modification techniques to eliminate behaviors deemed undesirable 2,3,8,11,14,15,16,17,18;
Whereas, 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 2,3,8,11,14,15,16,17,18;
Whereas, 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 2,8,15;
Whereas, A 2018 study found that Adults with autism who have received ABA are more prone to suicide 19; and
[Resolution: 706 (A-23) Page 2 of 4]
Whereas, 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 20; and
Whereas, Adults with autism have been continuously outspoken about the trauma incurred by ABA practices experienced in their childhood 2,14,16,17,18;
Whereas, A 2012 literature review found the evidence base for services for adults with an ASD to be underdeveloped 21;
Whereas, A 2018 Cochrane review recommend further research after reporting very weak evidence in support of ABA 22;
Whereas, A 2022 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” 23;
Whereas, A 2020 Department of Defense report demonstrated a lack of correlation between improvement in symptoms and hours of direct ABA services, found that the improvements recorded were due to reasons other than ABA services, and ABA services did not meet the TRICARE hierarchy of evidence standard for medical and proven care 24;
Whereas, 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 25;
Whereas, 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) 24,26,27,28,29;
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; 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:
[Resolution: 706 (A-23) Page 3 of 4]
1 Standardizing Coverage of Applied Behavioural Analysts
2 Therapy for Persons with Autism Spectrum Disorder, H-
4 Our AMA supports coverage and reimbursement for evidence-
5 based treatment ofservices for Autism Spectrum Disorder
6 including, but not limited to, Applied Behavior Analysis Therapy.
7 (Modify Current HOD Policy
Fiscal Note: Not yet determined.
Maenner MJ. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. MMWR Surveill Summ. 2021;70. doi:10.15585/mmwr.ss7011a1
Wilkenfeld DA, McCarthy AM. Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder.” Kennedy Inst Ethics J. 2020;30(1):31-69. doi:10.1353/ken.2020.0000
Finn Gardiner. First-Hand-Perspectives-on-Behavioral-Interventions-for-Autistic-People-and-People-with-other-DevelopmentalDisabilities.pdf. Published online 2017. Accessed April 15, 2022.
Cassidy S, Bradley L, Shaw R, Baron-Cohen S. Risk markers for suicidality in autistic adults. Mol Autism. 2018;9(1):42. doi:10.1186/s13229-018-0226-4
Kupferstein H. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Adv Autism. 2018;4(1):19-29. doi:10.1108/AIA-08-2017-0016
Shattuck PT, Roux AM, Hudson LE, Taylor JL, Maenner MJ, Trani JF. Services for Adults With an Autism Spectrum Disorder. Can J Psychiatry Rev Can Psychiatr. 2012;57(5):284-291.
Reichow B, Hume K, Barton EE, Boyd BA. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2018;5:CD009260. doi:10.1002/14651858.CD009260.pub3
[Resolution: 706 (A-23) Page 4 of 4]
Chris Bonnello. 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/
Wong C, Odom SL, Hume K, et al. Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder. :114.
Solomon R, Van Egeren LA, Mahoney G, Quon Huber MS, Zimmerman P. PLAY Project Home Consultation Intervention Program for Young Children With Autism Spectrum Disorders: A Randomized Controlled Trial. J Dev Behav Pediatr. 2014;35(8):475-485. doi:10.1097/DBP.0000000000000096
Autistic Advocacy.org. Health-Insurance-and-Medicaid-Coverage-for-Autism-Services-A-Guide-for-Individuals-and-Families-7- 9-15.pdf. Published online July 2015. Accessed March 12, 2022.
Wetherby AM, Guthrie W, Woods J, et al. Parent-implemented social intervention for toddlers with autism: an RCT. Pediatrics. 2014;134(6):1084-1093. doi:10.1542/peds.2014-0757
RELEVANT AMA POLICY
Early Intervention for Individuals with Developmental Delay H-90.969
(1) Our AMA will continue to work with appropriate medical specialty societies to educate and enable physicians to identify children with developmental delay, autism and other developmental disabilities, and to urge physicians to assist parents in obtaining access to appropriate individualized early intervention services.
(2) Our AMA supports a simplified process across appropriate government agencies to designate individuals with intellectual disabilities as a medically underserved population.