At the American Medical Association House of Delegates annual meeting last month, they adopted a resolution (Resolution 706) originally entitled, “Revision of H-185.921, Removal of AMA Support for Applied Behavior Analysis” (American Medical Association [AMA], 2023, pp. 1179-1182). The old policy which is focused on health insurance coverage simply stated that, “AMA supports coverage and reimbursement for evidence-based treatment of Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy”. Even though it was a simple policy, it gave specific support for ABA and it gave ABA lobbyists support in their efforts legislatively and otherwise to garish support for ABA that was often obtained in a way that excluded other approaches like DIR®.
Thanks to this new resolution having been adopted as amended last month, the new policy will remove the explicit support for ABA and opens the door for supporting all evidence-based services, including DIR®. They also moved away from the word “treatment” and will use “services” instead which I think is a wonderful acknowledgment that an autistic person may need support services, but the concept of treating and fixing the autistic person as if they were broken is wrong and needed to be changed. Furthermore, the amendments made in the meeting expanded the language to widen the lens from just Autism Spectrum Disorder to include “neurodivergent individuals”. These are all much needed updates.
The reality is this policy will most likely sit quietly among countless AMA policies, but it is an important one for all of us that have been working to raise awareness about the limitations and problems with ABA and for those of us that have been advocating for DIR®.
While a handful of you that read this blog may see the policy at some point, very few will probably ever see the language within Resolution 706 that gave the supporting rationale for the new policy change. The rational provided is impressively well crafted and includes many of the exact things we have been including in our advocacy work here at ICDL. It also includes acknowledgement of the research supporting DIR® as an evidence-based approach (which we obviously know, but it is good to see it being referred to correctly more often now). So, I am going to include all the “Whereas” resolution rationale here for you. Take a read, it is quite good. You can view the entire resolution in the referenced document as well if you want. It includes all of their citations to support these “Whereas” statements.
From the AMA House of Delegate Handbook:
Whereas, A 2018 study from the Centers for Disease Control and Prevention (CDC) estimated the prevalence of autism spectrum disorder (ASD) among [children] aged 8 years to be 1 in 44; 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; and
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; and
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; and
Whereas, Autism Speaks lists 3,194 centers across the United States who offer ABA therapy as of 2022; and
Whereas, ABA was conceived in 1961 by Dr. Ole Ivar Lovaas to condition neurotypical behaviors in children he viewed as “incomplete humans”; and
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; and
Whereas, ABA uses behavior modification techniques to eliminate behaviors deemed undesirable; and
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; and
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; and
Whereas, A 2018 study found that Adults with autism who have received ABA are more prone to suicide; and
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; and
Whereas, Adults with autism have been continuously outspoken about the trauma incurred by ABA practices experienced in their childhood; and
Whereas, A 2012 literature review found the evidence base for services for adults with an ASD to be underdeveloped; and
Whereas, A 2018 Cochrane review recommend further research after reporting very weak evidence in support of ABA; and
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”; and
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; and
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; and
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®); and
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… (American Medical Association [AMA], 2023, pp. 1179-1182)
As the proud leader of ICDL, I am thrilled to see our advocacy work making a difference. It never moves as quickly as I would like, but it is moving and moving in the right direction.
This is also an important step for all those in the broader DIR community outside of ICDL that have thought they needed to adopt aspects of ABA into their work, have been trying to combine ABA and DIR in some way, or think they have to use a service delivery approach modeled after ABA. I understand that some thought this was the best strategic stance to take, but it is not the stance ICDL has taken nor will take. DIR® is an evidence-based and effective approach to promote human development. It is respectful, joyful, and allows each person to grow and develop in the context of their own authentic self. I thank all of you who have stood with ICDL as we have held to our values with faith that others would fully recognize the limits and problems with ABA and would see the wonderful benefits of DIR®. I am glad the AMA is moving in the right direction and I am hopeful others will follow.
American Medical Association. (2023). AMA House of Delegates handbook (2023 Annual Meeting). American Medical Association . https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwiIuuTKqISAAxXKkYkEHTI2BLwQFnoECA4QAQ&url=https%3A%2F%2Fwww.ama-assn.org%2Fsystem%2Ffiles%2Fa23-combined-handbook.pdf&usg=AOvVaw0KbJS_HWN4tp6Jr-PMMGZn&opi=89978449