“ASAN’s objection is fundamentally an ethical one. The stated end goal of ABA is an autistic child who is “indistinguishable from their peers”—an autistic child who can pass as neurotypical. We don’t think that’s an acceptable goal. The end goal of all services, supports, interventions, and therapies an autistic child receives should be to support them in growing up into an autistic adult who is happy, healthy, and living a self-determined life.” ~ Julia Bascom
Despite some industry changes in applied behavioral analysis practices and therapy models, ABA practices will always be based upon a foundation of compliance, coercion, and behaviorist principles. It is impossible to practice ABA even gently or playfully, without attempting to control and manipulate a person’s behavior.
The fundamental goal of ABA is compliance to the will of the person in the position of authority; this is completely counter-intuitive to self-advocacy, self-determination, and upholding human rights and dignity.
The Therapist Neurodiversity Collective has strong ethical concerns and philosophical differences pertaining to the use of Applied Behavioral Analysis (ABA) on human beings, including ABA-derived therapy models and relationship-based therapy models paired with ABA. Our members pledge to provide therapy in manners that uphold the dignity of the individual while promoting self-determination. We are troubled that ABA is performed on pediatric, adult and elderly populations without consent from the humans on the receiving end.
Our therapists provide trauma-informed, research-based alternatives to ABA-based behavior management. We do so in accordance with evidence-based, ethical and empathetic practices. Current autism research published within the past three years finds ABA to be both ineffective and harmful, including the 12-page report, “The Department of Defense Comprehensive Autism Care Demonstration Quarterly Report to Congress Second Quarter 2019.”
Licensed and ASHA Certified Speech-Language Pathologists have the unique, necessary training and education in anatomy, physiology, neurology, and neurological based conditions, language development, and motor development to address self and/or other-harming client behaviors through the investigation of the underlying causes. Trained SLPs and their SLP-Assistants teach clients to self-advocate through functional communication, thereby ensuring that they retain the inherent human-right of self-determination. Occupational Therapists focus on a person’s ability to function independently rather than the “function” of any particular “behavior”. What guides the practice of an Occupational Therapist is what is of most importance to the client – personal goals, hobbies, and occupations. OTs teach the skills for the job of living, using a broad knowledge-base of anatomy and physiology, neuroscience, psychology, and activity analysis to help people achieve their highest level of independence with the activities of daily living that are most meaningful to the client.
Our therapists listen to and respect Autistic and other Neurodivergent voices. Our therapists do not “treat autism.” Coercing a neurodivergent person to “normalize” through ABA and/or other masking therapy models is disrespectful and can cause substantial trauma.
Our therapists provide barrier-free access to AAC with no prerequisites.
We do not force compliance through the earning of snacks, checkmarks, behavior charts, stickers, access to favorite or personal items and objects, activities, or similar. We completely reject aversion therapy (punishment) for any situation, including withholding attention or affection, favored foods, activities, or objects. We don’t train human beings like pigeons, chickens or dogs.
Regarding ABA aversion therapy – We are appalled and horrified that the Association for Behavior Analysis International (ABAI) chooses to condone painful electric shock aversion therapy at the Judge Rotenberg Center, which the United Nations Special Rapporteur on Torture has condemned. We are horrified that the JRC will continue the fight to be allowed to continue torturing human beings. It is disturbing to us that BCAB allows for the “ethical” use of punishment. (See section 4.08 in the Professional and Ethical Compliance Code for Behavior Analysts.)
We do not force-feed children, patients with dementia, or those with other neurological or cognitive decline or injury. Compulsory-feeding is abusive and traumatic and poses significant physical, emotional, and psychological risks.
We do not suppress stimming or echolalia, force eye-contact, or require “whole body listening.” We do not steal childhoods from children via 20–40 hours of ABA per week. Autistic and other neurodivergent children deserve unstructured free time, just the same as neurotypical children.
We presume competence in every client and patient. We speak and interact with disabled and / or non-verbal people the same as any other clients and patients we serve. We accept all forms of communication and we do not presume that every person will be, or even wants to be verbal.
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
(Warning – Ableist Language)
DISCUSSION OF THE EVIDENCE REGARDING CLINICAL IMPROVEMENT OF CHILDREN DIAGNOSED WITH ASD
While there is some limited research suggesting early behavioral and developmental interventions (based on the principles of ABA services delivered in intensive and comprehensive programs) can significantly affect the development of some children diagnosed with ASD, not all children diagnosed with ASD receiving ABA services show improvements. Two well-respected medical literature review services, external to DHA, continue to find the evidence for ABA services (Intensive Behavior Intervention) for the diagnosis of ASD is weak, noting, “An overall low-quality body of evidence mainly from poor-quality studies suggests that Intensive Behavior Intervention (IBI) improves intelligence or cognitive skills, visual-spatial skills, language skills, and adaptive behavior compared with baseline levels or other treatments. Six years after this agency’s extensive June 2013 ABA coverage review, the published reliable evidence does not reflect any consensus as to whether the reported improvements are clinically significant; very few studies reported on the clinical significance of findings. A paucity of evidence regarding the durability of treatment following treatment cessation, as well as uncertainty regarding optimal therapy parameters, preclude firm conclusions regarding the efficacy of IBI for ASD” (Hayes 2019) 6. Cochrane (2018) 7 noted, “The strength of the evidence in this review is limited because it mostly comes from small studies that are not of the optimum design. Due to the inclusion of nonrandomized studies, there is a high risk of bias and we rated the overall quality of evidence as ’low’ or ’very low’ using the GRADE system, meaning further research is very likely to have an important impact on our confidence in the estimate of effect and is likely to change the estimate.”
“The research literature available regarding ABA services predominantly consists of single-case design studies which does not meet criteria for “reliable evidence” under TRICARE standards. There are still methodological concerns limiting the strength of the research such as identified characteristics of children (including symptom severity), rendering providers, and types of treatment for positive outcomes. These limitations include: “dose-response” (frequency, intensity, and duration), treatment fidelity, few studies which use a control group, few longitudinal studies which demonstrate long-term effectiveness, and no replication of similar in well-designed studies.”
OFFICE OF THE UNDER SECRETARY OF DEFENSE – Re: TRICARE (See 2019 Department of Defense full report on ABA at bottom of page):
The ABA industry has significant conflicts of interest, where researchers profit directly from creating specific findings, than almost any other area of research.
“Conclusions: Conflicts of interest are prevalent but under‐reported in autism early intervention research. Improved reporting practices are necessary for researcher transparency and would enable more robust examination of the effects of COIs on research outcomes.”
Bottema‐Beutel, K., Crowley, S., Sandbank, M. and Woynaroski, T.G. (2020), Research Review: Conflicts of Interest (COIs) in autism early intervention research – a meta‐analysis of COI influences on intervention effects. J Child Psychol Psychiatr. doi:10.1111/jcpp.13249
Project AIM: Autism Intervention Meta-Analysis for Studies of Young Children
We found that when study quality indicators were not taken into account, significant positive effects were found for behavioral, developmental, and NDBI intervention types. When effect size estimation was limited to studies with randomized controlled trial (RCT) designs, evidence of positive summary effects existed only for developmental and NDBI intervention types. This was also the case when outcomes measured by parent report were excluded. Finally, when effect estimation was limited to RCT designs and to outcomes for which there was no risk of detection bias, no intervention types showed significant effects on any outcome.
Sandbank, Micheal & Bottema-Beutel, Kristen & Crowley, Shannon & Cassidy, Margaret & Dunham, Kacie & Feldman, Jacob & Crank, Jenna & Albarran, Susanne & Raj, Sweeya & Mahbub, Prachy & Sandbank, Citation & Crowley, K & Cassidy, S & Dunham, M & Feldman, K & Albarran, J & Raj, S & Woynaroski, Tiffany. (2019). Project AIM: Autism Intervention Meta-Analysis for Studies of Young Children. Psychological Bulletin. 146. 10.1037/bul0000215.
Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder”
Specifically, we will argue that employing ABA violates the principles of justice and nonmaleficence and, most critically, infringes on the autonomy of children and (when pushed aggressively) of parents as well.
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
Clinical and cost effectiveness of staff training in the delivery of Positive Behaviour Support (PBS) for adults with intellectual disabilities, autism spectrum disorder and challenging behaviour – randomised trial
Results suggest lack of clinical effectiveness for PBS delivered by specialist ID clinical teams.
Strydom, A., Bosco, A., Vickerstaff, V. et al. Clinical and cost-effectiveness of staff training in the delivery of Positive Behaviour Support (PBS) for adults with intellectual disabilities, autism spectrum disorder and challenging behaviour – randomised trial. BMC Psychiatry 20, 161 (2020). https://doi.org/10.1186/s12888-020-02577-1
Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis
Kupferstein, H. (2018). Advances in Autism, Vol. 4 No. 1, pp. 19-29. https://doi.org/10.1108/AIA-08-2017-0016
How much compliance is too much compliance: Is long-term ABA therapy abuse?
Aileen Herlinda Sandoval-Norton & Gary Shkedy | Jacqueline Ann Rushby (Reviewing editor) (2019) How much compliance is too much compliance: Is long-term ABA therapy abuse?, Cogent Psychology, 6:1, DOI: 10.1080/23311908.2019.1641258
Should we change targets and methods of early intervention in autism, in favor of a strengths-based education?
Mottron, L. Eur Child Adolesc Psychiatry (2017) 26: 815. https://doi.org/10.1007/s00787-017-0955-5
WHY CAREGIVERS DISCONTINUE APPLIED BEHAVIOR ANALYSIS (ABA) AND CHOOSE COMMUNICATION-BASED AUTISM INTERVENTIONS
Kupferstein, H. (2019) Why caregivers discontinue applied behavior analysis (ABA) and choose communication-based autism interventions. Advances in Autism. doi: 10.1108/AIA-02-2019-0004
Treating self-injurious behaviors in autism spectrum disorder
Gary Shkedy, Dalia Shkedy & Aileen H. Sandoval-Norton | Luca Cerniglia (Reviewing editor) (2019) Treating self-injurious behaviors in autism spectrum disorder, Cogent Psychology, 6:1, DOI: 10.1080/23311908.2019.1682766
Early intensive behavioral intervention (EIBI) for increasing functional behaviors and skills in young children with autism spectrum disorders (ASD)
There is weak evidence that EIBI may be an effective behavioral treatment for some children with ASD; the strength of the evidence in this review is limited because it mostly comes from small studies that are not of the optimum design. Due to the inclusion of non-randomized studies, there is a high risk of bias and we rated the overall quality of evidence as ‘low’ or ‘very low’ using the GRADE system, meaning further research is very likely to have an important impact on our confidence in the estimate of effect and is likely to change the estimate.
For Further Reading:
First-Hand Perspectives on Behavioral Interventions for Autistic People and People with other Developmental Disabilities – Autistic Self Advocacy Network (ASAN)
Access to Communication Services and Supports: Concerns Regarding the Application of Restrictive “Eligibility” Policies – National Joint Committee for the Communication Needs of Persons With Severe Disabilities
Autism and Behaviorism -New Research Adds to an Already Compelling Case Against ABA
“When a common practice isn’t necessary or useful even under presumably optimal conditions, it’s time to question whether that practice makes sense at all.”
Is ABA the Only Way? – Barry M.Prizant, Ph.D., CCC-SLP
The Hidden Potential of Autistic Kids – Scientific American
The Great Big ABA Opposition Resource List – Ask an Autistic
5 Important Reasons Even “New ABA” is Problematic – Kaylene George
Research-Based Approaches to Autistic Ways of Learning – Karla McLaren
Autistic Conversion Therapy – Amy Sequenzia
For Further Listening: