Over and Over and Over: A Continued Call for Autistic Voices





Representation, Policy


As an Autistic student in a master’s degree, I focused on the way expertise is understood. I was specifically interested in how policy decisions in education were made without Autistic involvement. I looked at the literature that was used to make these decisions and interviewed Autistic people as to their thoughts on who should be considered experts when it comes to autism. I found that policy was driven by experts who had little to no direct experience with autism or Autistics and who had no personal connections to the approaches they recommended. I argue that Autistic people must be involved in research design, execution, implementation, dissemination, and policy decisions. 


Bottema-Beutel, K., Crowley, S., Sandbank, M., & Woynaroski, T. G. (2021). Research Review: Conflicts of Interest (COIs) in autism early intervention research – a meta-analysis of COI influences on intervention effects. Journal of Child Psychology and Psychiatry, 62(1), 5–15. https://doi.org/10.1111/jcpp.13249

Callon, M. (1986). Some Elements of a Sociology of Translation: Domestication of the scallops and the fishermen of St Brieuc Bay. In J. Law (Ed.), Power, Action and Belief. Routledge.

Collins, H. (2014). Are we all scientific experts now? Polity. Collins, H., & Evans, R. (2002). The Third Wave of Science Studies: Studies of Expertise and Experience. Social Studies of Science, 32(2), 235–296. https://doi.org/10.1177/0306312702032002003

Collis, R. (2019). Negotiating the Meaning of ‘Evidence Based’ Autistic Programming [Undergraduate Thesis, York University]. https://www.mrcollis.ca/research/negotiating-the-meaning-of-evidence-basedautistic-programming

Dawson, M., & Fletcher-Watson, S. (2021). Commentary: What conflicts of interest tell us about autism intervention research—a commentary on Bottema-Beutel et al. (2020). Journal of Child Psychology and Psychiatry, 62(1), 16–18. https://doi.org/10.1111/jcpp.13315

Epstein, S. (1995). The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials. Science, Technology, & Human Values, 20(4), 408–437. https://doi.org/10.1177/016224399502000402

Government of Ontario. (2007). Policy/Program Memorandum No. 140. Ontario Ministry of Education. http://www.edu.gov.on.ca/extra/eng/ppm/140.html#1

Kohn, A. (2020, January 29). Autism and Behaviorism: New Research Adds to an Already Compelling Case Against ABA. National Education Policy Center. https://nepc.colorado.edu/blog/autism-andbehaviorism

Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19–29. https://doi.org/10.1108/AIA-08-2017-0016

McGuinty Government Helping Students With Autism Reach Their Full Potential. (2006, September 20). Ontario Newsroom. https://news.ontario.ca/archive/en/2006/09/20/McGuinty-Government-Helping-Students-With-Autism-Reach-Their-Full-Potential.html

Milton, D. (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism, 18(7), 794–802. https://doi.org/10.1177/1362361314525281

Milton, D., Mills, R., & Pellicano, E. (2014). Ethics and Autism: Where is the Autistic Voice? Commentary on Post et al. Journal of Autism & Developmental Disorders, 44(10), 2650–2651. https://doi.org/10.1007/s10803-012-1739-x

Ministers’ Autism Spectrum Disorders Reference Group. (2007). Making a Difference for Students with Autism Spectrum Disorders in Ontario Schools. Queen’s Printer for Ontario.

Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., Weiner, M., Maslak, J., Hunter, M., & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007–2019. https://doi.org/10.1177/1362361319830523

Perry, A., & Condillac, R. (2003). Evidence-Based Practices for Children and Adolescents With Autism Spectrum Disorders: Review of the Literature and Practice Guide. Children’s Mental Health Ontario.

Rodgers, M., Marshall, D., Simmonds, M., Le Couteur, A., Biswas, M., K, W., D, R., S, P., & R, S. L. & H. (2020). Interventions based on early intensive applied behaviour analysis for autistic children: A systematic review and cost-effectiveness analysis. Health Technology Assessment, 24(35). https://doi.org/10.3310/hta24350

Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020).

Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. http://dx.doi.org.ezproxy.library.yorku.ca/10.1037/bul0000215

Sandoval-Norton, A. H., & Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology, 6(1), 1641258. https://doi.org/10.1080/23311908.2019.1641258

Shea V. (2005). A Perspective on the Research Literature Related to Early Intensive Behavioral Intervention (Lovaas) for Young Children with Autism. Communication Disorders Quarterly, 26(2), 102–111.

The Department of Defense Comprehensive Autism Care Demonstration Annual Report. (2019). [Report to the Committees on Armed Services of the Senate and House of Representatives]. http://health.mil/Reference-Center/Congressional-Testimonies/2019/06/10/Annual-Report-on-Autism-Care-Demonstration-Program

The Department of Defense Comprehensive Autism Care Demonstration Annual Report. (2020). [Report to the Committees on Armed Services of the Senate and House of Representatives]. https://therapistndc.org/wp-content/uploads/2020/08/Annual-Report-on-Autism-Care-Demonstration-Program-for-FY-2020.pdf

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.




How to Cite

Collis, R. (2021). Over and Over and Over: A Continued Call for Autistic Voices. Canadian Journal of Autism Equity, 1(1), 18–22. https://doi.org/10.15173/cjae.v1i1.4984