Position Statement on the use of Applied Behavior Analysis and related behavioral methods in the context of treatment, therapy, habilitation or education for autistic people

We are deeply concerned about the widespread lack of attention to autistic people’s expressed views and lived experience regarding Applied Behavior Analysis (ABA) and related behavioural methods. 

The message we consistently hear from our member organisations and other communities of autistic people is that the use of these methods frequently leads to negative effects. In many cases, observations and debates on these matters go back decades. Our recent survey (1), covering 31 countries, showed most autistic participants who had experienced or observed ABA viewing it negatively, with only a small minority mentioning neutral or positive effects. Numerous participants described the methods as harmful, abusive, invasive and overwhelming. They experienced ABA practice as enhancing stigmatization and suppressing harmless or beneficial types of behavior, leading to discomfort, guilt, lowered self-esteem, and masking of natural emotional expression and behavior, which can have devastating consequences (2).  A similar message was conveyed in 2022 through the joint global efforts of autistic people’s organisations to comment on directions of autism research, opposing recommendations to prioritize behavioural interventions in autism research (3,4). Many of the concerns expressed by autistic communities can also be found in research literature, including weakness of evidence base and ineffectiveness (5,6), targeting of harmless differences (7), inadequate attention to conflicts of interest in research (8), and other ethical issues including possible harm (9,10).

Our survey results, as well as other feedback from autistic advocates and communities, have led us to believe that when given the choice, most autistic people will select other methods and forms of support for themselves and their autistic family members. The majority of the 620 survey respondents from Europe were strongly against the use of ABA and ABA-based methods with autistic people. Yet the provision of these methods is growing in Europe (11), while the voices of autistic people remain unheard in decision-making concerning research and development of services. For example, there is growing concern regarding EU-funded projects aimed at introducing ABA-related methods to teachers, promoting them as the gold standard for addressing autistic pupils’ difficulties in schools and early education (12).

The distress and traumatization of numerous autistic people must not be ignored. We therefore call for governments and providers of care, disability and educational services for autistic people to give serious consideration to this matter. We urge organisations and professionals to ensure the provision of a sufficient range of evidence-based support to maintain genuine freedom of choice, and avoid creating situations where autistic people or their families are pressured to accept ABA or ABA-based interventions against their will. We call for the involvement of disabled autistic people in the planning and monitoring of services and support forms targeting them, in accordance with the UN Convention on the Rights of People with Disabilities (14) and the  General Comment No. 7 (2018) on the participation of persons with disabilities (15).

Further, we appeal to research institutions and funders of autism research to focus efforts on assessing the long-term effects of ABA and ABA-based interventions on the mental health of autistic people, while ensuring that such research is of high quality, participatory, free of conflicts of interest, and informed by autistic people’s lived experience.

References

  1. EUCAP (2024): Autistic people’s views on ABA in Europe: EUCAP survey results 2022. http://eucap.eu/projects/aba
  2. S. A. Cassidy, K. Gould, E. Townsend, M. Pelton, A. E. Robertson, J. Rodgers (2020): Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviours? Expanding the Interpersonal Psychological Theory of Suicide in an Undergraduate Student Sample. Journal of Autism and Developmental Disorders, 2020 Oct;50(10):3638-3648. https://pubmed.ncbi.nlm.nih.gov/31820344/
  3. Global Autistic Task Force on Autism Research (2022): Open letter to the Lancet Commission on the future of care and clinical research in autism. http://eucap.eu/2022/02/14/open-letter-to-lancet-commission/
  4. Pukki et al. (2022): Autistic perspectives on the future of clinical autism research. https://www.liebertpub.com/doi/full/10.1089/aut.2022.0017
  5. Reichow B, Hume K, Barton EE, Boyd BA (2018): Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2018;5(5):CD009260. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6494600/
  6. United States Department of Defense (2020). Report to the Committees on Armed Services of the Senate and House of Representatives: The Department of Defense Comprehensive Autism Care Demonstration Annual Report. 2020. https://rb.gy/h57cfa
  7. Bottema-Beutel, K., McKinnon, R., Mohiuddin, S., LaPoint, S. C., & Kim, S. Y. (2024): Problems with “problem behavior”: A secondary systematic review of intervention research on transition-age autistic youth. Autism 2024 Feb 22. https://doi.org/10.1177/13623613241229159
  8. Bottema-Beutel K, Crowley S, Sandbank M, Woynaroski TG (2021): Research review: Conflicts of Interest (COIs) in autism early intervention research—A meta-analysis of COI influences on intervention effects. J Child Psychol Psychiatry. 2021;62(1):5–15. https://pubmed.ncbi.nlm.nih.gov/32353179/
  9. Aileen Herlinda Sandoval-Norton, Gary Shkedy & Dalia Shkedy | Jacqueline Ann Rushby (Reviewing editor) (2019): How much compliance is too much compliance: Is long-term ABA therapy abuse?, Cogent Psychology, 6:1. https://doi.org/10.1080/23311908.2019.1641258
  10. Wilkenfeld, D.A., & McCarthy, A.M. (2020): Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder”. Kennedy Institute of Ethics Journal 30(1), 31-69. https://doi.org/10.1353/ken.2020.0000.
  11. Keenan, M., Dillenburger, K., Konrad, MH. et al.(2023): Professional Development of Behavior Analysts in Europe: A Snapshot for 21 Countries. Behav Analysis Practice 16, 709–729. https://doi.org/10.1007/s40617-022-00754-0
  12. The A-class project (2023): The A-class teacher’s handbook: Integrating students with autism in mainstream classroom. https://theaclass.eu/products/hb-ad/the-a-class-handbook/
  13. Centar zo Autizam (2023): Novi Erasmus+ projekt u Centru za Autizam. https://rb.gy/5kyotz
  14. United Nations (2006): UN Convention on the Rights of People with Disabilities. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-Persons-with-disabilities.html#Fulltext
  15. United Nations (2018): General comment No. 7 (2018) on the participation of persons with disabilities. https://rb.gy/zvi9wx