Did you know that there is a Congressional Autism Caucus?
Now is the time to voice your opposition to ABA!
Both the lived experiences of Autistic people and contemporary research demonstrates that ABA is harmful, unethical, based on poor research, and ineffective.
ARM YOURSELF WITH THE RESEARCH
Dawson M, Fletcher-Watson S. When autism researchers disregard harms: A commentary. Autism. July 2021. doi:10.1177/13623613211031403Ne’eman A. When Disability Is Defined by Behavior, Outcome Measures Should Not Promote “Passing”. AMA Journal of Ethics. 2021 Jul;23(7):E569-575. DOI: 10.1001/amajethics.2021.569. PMID: 34351268.
Sandoval-Norton, A.H., Shkedy, G. & Shkedy, D. Long-term ABA Therapy Is Abusive: A Response to Gorycki, Ruppel, and Zane. Adv Neurodev Disord 5, 126–134 (2021). https://doi.org/10.1007/s41252-021-00201-1
Dawson, M. and Fletcher-Watson, S. (2021), Commentary: What conflicts of interest tell us about autism intervention research—a commentary on Bottema-Beutel et al. (2020). J. Child Psychol. Psychiatr., 62: 16-18. https://doi.org/10.1111/jcpp.13315
Annual Report on Autism Care Demonstration Program for FY 2020
June 25, 2020: Report to the Committee on Armed Services of the Senate and House of Representatives on TRICARE and ABA
OFFICE OF THE UNDER SECRETARY OF DEFENSE – October 2019 TRICARE-Autism-Report_
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. PMID: 32336692.
Sandbank M, Bottema-Beutel K, Woynaroski T. Intervention Recommendations for Children With Autism in Light of a Changing Evidence Base. JAMA Pediatr. 2021 Apr 1;175(4):341-342. doi: 10.1001/jamapediatrics.2020.4730. PMID: 33165523.
McGill, O. and Robinson, A. (2020), ““Recalling hidden harms”: autistic experiences of childhood applied behavioural analysis (ABA)”, Advances in Autism, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/AIA-04-2020-0025
Bottema-Beutel K, Crowley S, Sandbank M, Woynaroski TG. Adverse event reporting in intervention research for young autistic children. Autism. 2021 Feb;25(2):322-335. doi: 10.1177/1362361320965331. Epub 2020 Oct 19. PMID: 33076682; PMCID: PMC7870528.
Contact your State Congressional Members of the Congressional Autism Caucus
This 141-member caucus includes members from both parties in the U.S. House of Representatives and in the U.S. Senate. You can call or fax any member of any of these members, but you can only email those that are your House Representative or Senator. Go to their websites to find their contact information.
Be sure to remind them that ABA’s ineffectiveness was most emphatically concluded in the Department of Defense’s Autism Care Demonstration project.
As I’ve reported previously in Therapists Neurodiversity Collective blogs, here and here, the 2020 Department of Defense Comprehensive Autism Care Demonstration Annual Report was commissioned in response to a request by the 2016 U.S. Senate to the Department of Defense (DoD), to study the effectiveness of the Autism Care Demonstration (ACD).
Through TriCare Insurance, the military’s healthcare insurance provider, the DoD spends over $1.5 BILLION on ABA services, at an average annual cost of over $23,000 per autistic participant. At the conclusion of their two-year study, the DoD report concluded:
- “… these findings demonstrate that … the delivery of ABA services, is not working for most TRICARE beneficiaries in the ACD.”; and
- “ … the Department remains very concerned about these results, and whether the current design of this demonstration, as well as ABA services specifically, is providing the most appropriate and/or effective services to our beneficiaries diagnosed with ASD.”
In fact, they found that effectiveness decreased, with increasing hours of ABA treatment. This followed their 2019 preliminary findings, which were strongly criticized by ABA advocates, that 76% of the children had shown little or no change in their PDBI score (their measure of effectiveness), only16% had improved, and 9% had worsened.
Despite the results of its own study, TriCare Insurance is emphatic that it still is insuring ABA therapy. No doubt these Caucus members are aware of these studies, but they may not be aware of the trauma and PTSD caused by ABA.
These Caucus members need to have a ready answer for what their constituent families can do. Point them to https://therapistndc.org/therapy/non-aba-evidence-based-practice/, where we describe what parents need to look for in a neurodiversity-friendly therapy.
They may also want more information about the negative effects of ABA. Tell them about our blog (https://therapistndc.org/category/aba/), where they can read many stories about the adverse effects of ABA, or if you can, your them about your own personal experiences with ABA, or those of your autistic kiddos.
We can assume they are hearing from not just families but representatives from ABA advocacy groups. Caucus members need to hear you!
Barry R. Nathan, Ph.D. ABA Initiative Chair for Therapist Neurodiversity Collective
Dr. Nathan is an industrial-organizational psychologist. Barry’s autism research includes “Turning Behavior and Anxiety into Communication for Social Problem-Solving by Thinking in Speech®,” a study presented at the 12th Annual International Autism Europe Congress, in Nice, France (November 2019); and two current funded research projects, “Addressing Autism in African American Families,” with Dr. Valire Carr Copeland of the University of Pittsburgh School of Social Work and “Neurocognitive Therapy for Children with Autism,” with Dr. Barbara Baumann of the University of Pittsburgh Department of Psychiatry in School of Medicine. Barry was the facilitator of a panel discussion on “Autism and the School-to-Prison Pipeline,” presented at the 2019 University of Pittsburgh School of Education Center for Urban Education Summer Educator Forum (CUESEF), and a co-presenter with Jamie Upshaw, M.S., Executive Director of Autism Urban Connections Inc., at the 2019 Greater Pittsburgh Nonprofit Partnership Summit, “Addressing Autism in the Black Community: Autism Urban Connections, Inc.” Barry is the author of the following blogs on the Therapist Neurodiversity Collective’s website, which have been read by thousands:
Rebuttal to critique of “ABA is NOT Effective: So says the Latest Report from the Department of Defense”
ABA is NOT Effective: So says the Latest Report from the Department of Defense
Fundamental Research Problems with the ASHA Board Certified Specialist in Autism Spectrum Disorders (BCS-ASD)
- Actually Autistic Perspective
- Guest Author – Personal Perspective
- Social Skills Training
- Influencer Therapists: Dubious Ethics & Poor Quality Services - March 18, 2022
- Ableism in Speech Pathology - January 24, 2022
- Case Study in Neurodiversity-Affirming Care: A Toddler with Childhood Apraxia of Speech - December 21, 2021