American Medical Association removing support for ABA?: Unpacking Draft Resolution 706

(Trigger warning: discussion of ABA, abuse,  trauma, gay-conversion, homophobia, PTSD, suicide) 

Recently, the American Medical Association House of Delegates held their annual meeting from June 9-14, 2023.  The Medical Student Section put forth Referendum 706, titled “Revision of H-185.921, Removal of AMA Support for Applied Behavior Analysis” to be considered by the AMA House of Delegates. Ultimately, this Draft Resolution 706 was submitted to Reference Committee G, who significantly amended this draft and ended up only making 3 recommendations to the full House of Delegates, and those 3 were resolved. Reference Committee G’s amended report can be found here.

In this draft resolution 706, The Medical Student Section compiled a list of very strong points that were strongly against Applied Behavior Analysis (ABA). This article aims to unpack these points in layman's terms (or at least my interpretation/thoughts/opinions and how I personally understand it). Below is their proposal.

1. “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”

You can access the above-referenced study here. (Note: We know that autism still remains underdiagnosed and overlooked especially for girls and women, BIPOC, LGBTQIA+ and nonbinary individuals so the actual prevalence is likely much higher. As the movement continues towards increased research and training about how autism manifests for these systematically disadvantaged groups, we will likely see these numbers increase)

2. “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” 

ABA has an absolute monopoly over the autism care landscape. It is by FAR the most COMMON intervention (I refuse to call it therapy) for autistic children, starting as soon as they get diagnosed, and sometimes even continuing all the way up until they graduate high school. 

A quick google search of “Autism Therapy” yielded me 4 sponsored ads for ABA right on the top, and pages and pages and pages of sites that are promising families up to 40 HOURS A WEEK of ABA for their children and heralding its praises as the most “proven,”  most “evidenced-based”, most “effective” most “widely-accepted,” “successful,” “gold-standard,” the list of its praises goes on…  This is a problem.

According to this 2016 study, among 1115 autistic children aged 3-17, 43% of them were receiving behavioral “treatment” including ABA, and 70% were receiving both behavioral “treatment” AND medication. Assuming that this study is primarily referring to behavioral treatment methods that are either ABA, or ABA-based, if I’m reading this correctly, that’s like 7 out of 10 autistic kids receiving ABA or ABA-based intervention. That’s a vast majority. I wish they were receiving developmental models of intervention (such as DIR-Floortime) instead. 

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 10 combined revenue of $547 million and a market value close to $2 billion with future growth expected.

I honestly am absolutely astounded at this, though not surprised. Market Value of 2. BILLION. DOLLARS. 

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

Here is a $2 million settlement with an ABA provider that submitted fraudulent claims to TRICARE and Indiana Medicaid. Here is another ABA provider that defrauded Medicaid for over $550,000. Here is someone who literally wasn’t even a BCBA, stole the identity of a BCBA to impersonate them, and then proceeded to fraudulently claim over $339,000 from Medicaid as a fake ABA provider. Here is a $354,000 settlement with a private school who decided to bill for one-on-one ABA services even though they were doing it in groups. Here is an 8.8 million dollar settlement with an ABA provider who defrauded TRICARE/Medicaid by submitting claims for ABA services that may have not even occurred at all.

Okay, I went on a tangent of learning about ABA and fraudulent claims, but I digress. I can definitely tell you that I have a sick feeling in my stomach right now. I guess what I am pulling from this is that I feel like beyond being traumatic and unethical, much of this industry seems to be taking advantage of vulnerable children and families. 

Not to mention a whole other issue about the low standards of care in the ABA world where providers with questionable credentials are undertrained, underqualified, and under supervised. Just as a whole this entire industry seems extremely shady. Burn it.

5. Whereas, Autism Speaks lists 3,194 centers across the United States who offer ABA therapy as of 2022.

Cancel Autism Sp3aks. The ableist, fear-mongering, deficit-based, pathologizing, unsupportive, exclusionary, neurotypical-led, puzzle-piece-toting, ABA-supporting, offensive, unhelpful organization has still somehow never been canceled and knocked off its pedestal despite the extensive public conversation by the actually autistic community about why and how they are harmful. Meanwhile, less than 1% of their budget is going to actual services for autistic people and their families, according to Autism Self Advocacy Network’s 2021 update. 

6. Whereas, ABA was conceived in 1961 by Dr. Ole Ivar Lovaas to condition neurotypical behaviors in children he viewed as “incomplete humans”

Here enters the father of ABA therapy. So I wasn’t actually able to locate the source of this direct quote about “incomplete humans” but I damn sure found a whole host of horrific claims and practices made by Ole Ivar Lovaas, including but not limited to his involvement in the Feminine Boy Project, which, trigger warning, is how he used ABA on children as a form of gay conversion therapy. Access this study here.

Gay Conversion Therapy and Applied Behavioral Analysis (which could also be considered Autism Conversion Therapy) go hand in hand, really. It’s essentially identifying a child that is different and forcing/training/engineering them to conform, act, and behave, more “acceptably” according to heteronormative, neurotypical standards. It’s telling children that they need to change for those around them to like them. It’s telling children that if they do not perform to an adult’s expectations, they will not be rewarded. They will only be rewarded if they comply and conform to someone else’s expectations, even if that means going against who they are, what they want, and what they need physically, emotionally, and mentally. It’s not only about rewarding and reinforcing the desired behavior, either, it’s about punishing too, especially for Ole Ivar Lovaas, who would use punishment (known in the ABA world as aversive stimuli) such as spanking, apparently even for harmless stimming such as hand flapping. ABA today still tries to train/force away and suppress stims.

7. 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

Consent is a key word here. Let’s take for example, the very modern, still WIDELY used concept of “Quiet Hands.” “Quiet hands” is what ABA workers (still refuse to call them therapists) and ABA parents will tell their children as a prompt to suppress stims. Quiet hands means put your hands in your lap or on the table and stop stimming. To look acceptable and proper. Same with eye contact. If you make eye contact, here’s a piece of candy. If you don’t perform the desired trick, you will get ignored, you won’t get a smile, touch, a candy, or any positive regard, you will get an expressionless face, an indifferent tone of voice, and no attention because you did not earn it. 

When the child is receiving a prompt by their ABA adult, their needs, wants, wishes, personhood, does not matter. They are being forced to suppress stims, when their body needs movement. They are being conditioned from such an early age, for so many hours, for so many years, that they should not listen to their bodies, and should only listen to adults. Even though they may need movement to self-regulate, the ABA person tells them Quiet Hands, and if they don’t put their hands in the desired position, the ABA person will touch their hands and place it in the desired position. This is a big problem for me. This is also teaching children to accept and conform to adult touch. This touch is NOT consensual and it teaches children that they have no autonomy. Even other aspects of their ABA program that don’t even involve touch, is still basically not consensual. Do we really think ANY child would want to sit at a table without moving and perform boring tasks such as “point to truck…. GOOD TRUCK!!!! point to train….. GOOD TRAIN! point to car… GOOD CAR!” over and over and over again, and if they are stressed or bored with it, they will either get physically prompted to continue, or they won’t get their reward? Horrifying. Special kind of hell. The tasks are often really stupid too. Monotonous, boring, repetitive, mechanical tasks in order to suppress or reduce behaviors that actually do feel good and right for the child. It’s so backwards. As long as they are safe, having a child engage in their self-regulating and coping behaviors is something to be encouraged and facilitated, not discouraged or forced away.

8. Whereas, ABA uses behavior modification techniques to eliminate behaviors deemed undesirable

Once again the behaviors that have been historically deemed undesirable are really rooted in ableism: the idea that autistic behaviors/characteristics are a bother to neurotypical society and reducing/masking them so that they are ”indistinguishable” from everyone else.

9. 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.

To the first point of “holding autistic children’s communication hostage through the use of their devices as leverage,” I wasn’t able to locate the direct source of this via their reference section, but I’ll chime in with 2 different scenarios that may or may not fit this. 

Hypothetical Example A: Child wants pretzels. Child reaches for the bowl of pretzels. ABA person takes and holds the bowl. ABA person prompts child to use their communication device to tap “I. want. pretzels.” Child does not want to use communication device and keeps reaching for bowl. Child doesn’t get pretzel. ABA person starts over. ABA person may even take the child’s hand to tap each word. ABA person says good job. Child gets one pretzel. They want another one. Child is prompted to ask for it on communication device. Child does it and gets pretzel. They don’t do it? No pretzel and/or their hand will be forced to use the device. Then they get pretzel. Over and over again. I don’t know about you, but if I had to ask permission to get access to my snack I would be extremely frustrated and may understandably have a meltdown. Reaching for a bowl is a form of effective communication. People deserve to have a snack that isn’t gatekept. 

Hypothetical Example B: Sometimes a child may have one device that has both their fun stuff and their communication stuff on it, let’s say they have an iPad with Youtube on it and their Augmentative and Alternative Communication (AAC) program on it. 

Ipad is on the table. 

There is also an ABA activity on the table and an ABA person prompting the child to complete tasks. Child reaches for iPad. (Maybe they want to express that they need to use the bathroom? Maybe they need water? Maybe they need to communicate an immediate basic need?) ABA person is using the iPad as a reinforcement and “Says first complete this task, then iPad.” Child is forced to complete activity before the ABA person allows them to use their iPad. This is denying someone access to their communication, food, and bathroom. This is literally abusive.

If I got up to go to the bathroom and an ABA person blocked me and told me to sit down at the table and tap the words on a device, I would absolutely lose my mind. These poor children are denied their basic human rights and don’t have the same ability that I have to be able to tell the person off. So they may have a tantrum, or meltdown to communicate this is not okay. And then, in their moments of intense stress and dysregulation, the ABA person will then ABA them even harder to train away the meltdown. This breaks people. 

10. 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

I think this is quite perfectly written. ABA therapy absolutely separates humanity from an autistic person and reduces them to observable, measurable behaviors that need to be trained away. A child is viewed as a series of “problem” behaviors, or treated as a circus animal who performs “desired” behaviors. Children are dynamic beings, and autistic children have extraordinarily dynamic neurotypes, and should be viewed, understood, treated and cared for holistically as the the amazing little people they are with their own wants, needs, likes, dislikes, preferences, quirks, habits, biological, social-emotional, cultural, sensory, and MENTAL HEALTH considerations just like everyone else. It’s called human rights.

11. Whereas, A 2018 study found that Adults with autism who have received ABA are more prone to suicide

In this study, researchers looked at MASKING AND CAMOUFLAGING and UNMET SUPPORT NEEDS as a considerable risk factor for suicidality in autistic adults. Because ABA is essentially a practice that trains autistic children to suppress and mask their neurodivergence, it is not surprising that they would be more prone to suicide. 

Important note to ABA survivors and unsupported autistics: your life matters and you are not alone. Please hold on. For the Suicide and Crisis Hotline: dial 988. (You can also text 988!)

(If you need help healing or need therapy or resources, please feel free to reach out to me directly at dani@neurosparkhealth.com).

12. 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

Here is the referenced study. Nearly half of participants who were exposed to ABA met criteria for PTSD, and in the other half, were still found to have “extreme levels of severity.” 

13. Whereas, Adults with autism have been continuously outspoken about the trauma incurred by ABA practices experienced in their childhood

ABA survivor stories on Tumblr is one space dedicated to sharing lived experiences of ABA survivors. 

Here is another person who compiled a list that includes first-hand lived experience of ABA survivors.

Neuroclastic also has a page dedicated to elevating lived experience stories of ABA participants. 

Here is an excerpt of an autistic Redditor’s experience with ABA:

 “Because of aba I feel like someone has walked in on me using the bathroom if they see me stimming (this is bad). I now rip out my own hair because they wouldn't let me flap my hands or rock in my seat.

Because of aba I feel like my body is not my own. A therapist told me that if I didn't wear a bra people would call me bee stings and saddlebags. i was 12.

Because of aba I am a chronic yes-man and I feel like someone will reject me if I try to set boundaries.

An aba therapist instructed my parents to lock me in my room overnight after I was toilet trained. I would cry for hours to use the bathroom. She told my parents I was "attention seeking".

Aba made me feel like I wasn't allowed to love myself as I was, that I had to be someone else to survive. I now have massive mental health repercussions.”

Here is a quote by Niko Boskovic, autistic adult and ABA survivor: “As someone who has had every sort of treatment thrown at them, I say don’t do any of these things! No child should be in 40 hours of therapy like I was. The most effective thing my parents did was to join me in cutting paper and the things I loved to do. It was the only way I knew to connect with the outside world. All the rest of it was irrelevant. Understanding that your child experiences the world very differently from you is the first step towards acceptance.

Sometimes I wonder what my childhood would have been like had I just been allowed to be able to do my own thing. Stopping my behaviors was the wrong way to go. Fortunately, I’m a pretty patient guy.” 

Here is an educational and powerful talk by autistic ABA survivor Jay Jay Mudridge, and a powerful interview with them about their experience in ABA.

Here is a non-speaking autistic boy named Philip Reyes’ letter to his parents.

14. Whereas, A 2012 literature review found the evidence base for services for adults with an ASD to be underdeveloped

Link to the free full text of the referenced study.. Spoiler alert, the research and evidence for autism services is especially lacking in regards to socioeconomic status and racial/ethnic diversity.

15. Whereas, A 2018 Cochrane review recommend further research after reporting very weak evidence in support of ABA

Here is the referenced study that calls for additional research by saying, “There is weak evidence that EIBI may be an effective behavioral treatment for some children with ASD,” and calling the strength of the evidence, “limited,” the quality of the evidence as “low” or “very low,” and stating there is a “high risk of bias” in the studies. 

16. 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

Autistic Not Weird’s 2018 online survey found that 53.48% of autistic respondents responded “disagree” or “strongly disagree.” Much of the rest of the respondents skipped that question or gave neutral responses. 

(Honestly not sure where they got 71%.)

17. 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 20 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

Check out this amazing summary of the 2020 Department of Defense Comprehensive Autism Care Demonstration Annual Report by the Therapist Neurodiversity Collective that concludes that ABA is not effective. 

18. 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

Conflicts of interest in research are essentially when a researcher may be influenced by some type of personal, financial, or professional reason/incentive/motivation. Basically, the researcher may benefit in some way by reporting favorable outcomes, which could compromise the honesty and integrity of the research because they stand to gain in some way if they prove a specific point. Studies need to be protected against potential bias to ensure integrity. Transparency is key. It is a huge red flag when a study does not declare or acknowledge conflicts of interest. 

According to the referenced study about COI in ABA Autism Literature, they examined 180 peer-reviewed articles from some pretty prominent behavioral journals including Journal of Applied Behavioral Analysis and Behavior Modification to determine if the authors had some type of personal/professional connection to ABA. They checked out if the authors provided ABA themselves and/or trained other ABA providers. Then they checked out if they were honest about it.

Out of the 180 journals examined, 151 (84%) had at least one author who had direct clinical or consultancy experience with ABA! 

Out of the 180 journals examined, 105 (58%) of them did not have any conflict of interest statement in their studies at all!

Out of the 180 journals examined, 70 (39%) of them straight up lied and said there WERE no conflicts of interest!

The jig is up. The research is highly biased. The research is literally being authored by people who practice ABA and of course they want to continue to push ABA and prove how “effective” it is. After all, their industry benefits from it, and of course, as detailed in above points, there are billions of dollars to be made. 

19. Whereas, Current research supports alternatives to ABA such as the Developmental, Individual Differences, and Relationship-based (DIR™) program, the PLAY Project, individualized Early Social Interaction (ESI) and, Social Communication, Emotional Regulation, and Transactional Support (SCERTS™)

Okay so I would like to formally state a conflict of interest in this, and a strong personal bias, because I trained in DIR/Floortime myself. Speaking from personal experience, I have witnessed firsthand how respectful, inclusive, engaging, fun, positive, consensual, developmentally-appropriate, and effective it is. I trained under people who worked with Dr. Stanley Greenspan himself, and completed internships at two separate DIR/Floortime-based locations, and it fundamentally revolutionized my view of autism intervention from a behavioral to a developmental/relational lens. 

The Developmental, Individual Differences, and Relationship-based model focuses on Functional Emotional Developmental Capacities (FEDC’s) and meets a child where they are at while fostering, growing, and promoting a child’s learning and development through meaningful, positive, and supportive relationships. Evidence base for DIR/Floortime can be found here.

The PLAY Project, which is clearly based on DIR/Floortime, is a model of autism intervention that emphasizes the value and power of play in a child’s life and teaches families techniques, methods, and activities to play with their child in a way that supports their social and functional outcomes. While I am not familiar with the PLAY project, I like that it seems affordable and specific in the training and education they offer to families as not everyone knows specifically how to play with their kid, so a framework of actionable steps could be helpful. Here is research that shows promising results for the PLAY Project.

I have never heard of individualized Early Social Interaction (ESI), but here’s what I found on it (note: Autism Speaks apparently funds some of this). It seems to be family-centered in that the parents and caregivers are the ones implementing the intervention in the child’s natural environment (at home, at the park, etc.), but it is quite unclear to me what the actual intervention types are. In this study I was able to find an example of Joshua, a 20-month old, who “If he is not redirected, Joshua will spend much of his time pacing or rolling objects….” “He gets very distressed when an object is removed or when activities cease…” goals include to “shift his gaze between people and objects, to request comfort when distressed, to display positive affect, to use a vocalization to gain attention, to imitate familiar actions in a turn-taking sequence, to use familiar objects functionally, and to make choices with gestures.” One intervention the parents used was that “he is given a choice of juice or water or of a type of cereal at breakfast and is given smaller portions so that he must vocalize to request more.” 

This is kind of giving ABA vibes to me, personally, and the information I found in my quick Google search was a little too vague for me to subscribe to at this point.

Social Communication, Emotional Regulation, and Transactional Support Model: Not familiar with this one either. It seems to me to be a bit more respectful and affirming. Learn more about it here.

20. 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

The “current” American Medical Association’s policy that they were referring to that existed before this whole Resolution 706 happened was (and pay attention to the language here)  Policy H-185.921 which stated, “AMA supports coverage and reimbursement for evidence-based treatment of Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy.”

Okay, so what was actually changed by Resolution 706? 

1. RESOLVED, That our American Medical Association support research towards the evaluation and the development of interventions and programs for autistic individuals 

2. 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 

3. 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: 

DRAFT Resolution: 706 (A-23) Standardizing Coverage of Applied Behavioral Analysis Therapy for Persons with Autism Spectrum Disorder, H3 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. (Modify Current HOD Policy)

What does this mean? It means that the only things that were actually resolved was:

a) That the AMA supports further research about autism interventions and programs.

b) That the AMA works with “relevant stakeholders” that recognize the diversity and personhood of autistic and neurodivergent people (I hope this means they will include actually autistic and actually neurodivergent voices) (another note: they included the language “neurodivergent” which is also much more inclusive and validates other neurodivergent experiences beyond just autism).

c) They changed the language to remove Applied Behavioral Analysis as an explicitly mentioned service, and also removed the language “treatment” from their policy (which is helpful in that it’s shifting away from the notion that autism is something to be fixed or cured).

That’s it. That’s literally all 3 points of this entire document that was brought forward by the Reference Committee G to the AMA house of delegates.

Overall, the fact that these points were brought forward by the Medical Student Section, even if it was highly amended by Reference Committee G before moving forward to the full House of Delegates, is still a huge step in the right direction. It’s good that there is discussion happening. It’s good that people are advocating. It’s great that this is even on the radar and on the agenda. I am happy that the amended AMA policy removes explicit support in its own way by changing some of the language, and also gives space for evidence-based ABA-alternatives as valid options, too.

We celebrate this small win, and look forward to more changes by professional associations and institutions that I hope will actually and officially remove their support of ABA. We still have a long way to go.

(Note: if anything is incorrect or needs updating on this blog, please let me know and I will edit it. Thank you!) 

-Dani