Listening to the real autism experts
By Chris Wenz
Earlier this month, I drove past a local park where volunteers were preparing for a 5k run to support Autism Speaks. Given that April is Autism Awareness Acceptance month [1], I wasn’t surprised to see the blue t-shirts and puzzle pieces. However, I was surprised to see a small group of protestors with a sign that read: “Autistic people are already speaking. LISTEN.” The sign and the courage it takes to protest a charity event was a powerful reminder of the opposition to Autism Speaks among autistic self-advocates. But I also read it as a clear expression of a core demand of the disability rights movement: “nothing about us without us” [2]. It is a demand that is too often unheeded: autistic people are routinely denied self-determination and excluded from the process of making social policy that dramatically impact their lives (e.g. Charlton, 1998; Ne’eman, 2010).
As an early-career researcher interested in autism, I have been thinking a lot about what I need to do to live up to this principle. The vast majority of the scientific knowledge of autism has been generated by non-autistic scholars like me. As a result, much of what we know reifies a deficit-focused and stigmatizing view of autism, a view that autistic advocates and an increasing number of scholars do not share (including me). When there is a gap between the beliefs and priorities of autism researchers and the autistic community, the risk is no small thing: research can be a means of oppression rather than a tool to improve the lives of autistic people.
This is not just an issue of social justice and scientific ethics [3]. It is also impossible for our attitudes and understanding of autism to improve if scholars don't actively engage with the real experts: autistic people [4]. As one participant in a 2011 study of autistic adults said, “...everybody is an expert bar the person with a diagnosis. That needs to change. That, if anything, is a biggie” (Griffith et al 2012, p. 542). One issue is that lived experience, in many academic disciplines, is not seen as as a valid way to understand autism (or any other phenomenon for that matter). From that perspective, the only expertise is academic. There are of course exceptions, including Participatory Action Research, a method employed by scholars across disciplines that actively includes the subjects of research in order to provide key insights that leads to actionable and meaningful results (Baun et al, 2006). Although there are still relatively few of them, the incredible studies of autism that have applied a participatory framework give me hope that it will become more widely adopted (e.g. Raymaker et al, 2017; Nicolaidas et al 2017) [5].
Listening for new perspectives and new questions
Studies that actively engaged with and valued autistic perspectives have clarified for me how differently autism is understood by autistic and non-autistic people AND how this difference can be a source of harm to autistic people. Two of my favorite recent studies on stimming provide an excellent illustration of what I'm getting at.
Repetitive sensory and motor behaviors (the medical term for stimming) are seen as a core symptom of autism, and are often the first targets for early intervention for autistic children, especially when the behaviors are self-injurious. Even when they are not self-injurious, it is quite common for behavioral interventionists to try to eliminate stims or make them more socially appropriate--so a child who is flapping her hands is taught to have “quiet hands.”
While recognizing that self-injurious stims need to be eliminated, autistic individuals have increasingly pushed back against therapies that discourage autistic children from stimming. In a 2015 study, a large majority of autistic adults reported that they enjoyed stimming (80%) and that it helped them to reduce anxiety (72%); however, over 70% had been told not to stim by teachers, family members and friends (Steward, 2015). Similarly, Kapp et al (2019) reported that stimming was an important self-regulatory mechanism for autistic adults; none of the 32 participants in their study reported disliking their stims. One participant, Sally describes how she learned about the benefits from stimming YouTube: “...And I started kind of incorporating it more in my life, and it actually managed to help me stave off some panic attacks. For example, I never used to wave my hands that much, but I’ve started doing it more and it actually helps, like if I’m in a crowded elevator or something” (p. 6).
In this case, exploring the perspectives of autistic adults should lead us to question whether eliminating stims is a) providing relief by treating a core symptom, or b) removing and stigmatizing an essential self-regulatory strategy. One thing is very clear to me: we have some more listening to do.
Notes
[1] The Autistic Self-Advocacy Network has rebranded April as “Autism Acceptance Month”. Kassiane Sibley wrote an exceptional article on the difference between Acceptance and Awareness in 2012.
[2] See Charlton's book Nothing About Us Without Us; it is not the first use of the term, but it is a seminal text that outlines a clear and forceful argument for self-determination as the antidote to the oppression of people with disabilites.
[3] Many social scientists and other scholars have thought carefully about the power imbalance between researchers and human subjects, especially when they are members of traditionally marginalized groups. For example Maiter, Simich & Wise (2008) outline the need for "reciprocity" in participatory action research as a means for changing the power balance between researcher and subject(s). Further, excluding the people being studied from the generation of knowledge about them runs counter to the principle of self-determination that has for 40+ years animated much-needed reforms to social service programs (see Ward, 2005 for a historical account of the idea of self-determination).
[4] I can not more highly recommend the book The Real Experts: Readings for Parents of Autistic Children. Edited by Michelle Sutton, the book is a short, powerful collection of the insights from autistic voices that helped Michelle raise her two autistic children. It is a must read and I encourage anyone interested in the book to buy directly from the publisher, Autonomous Press.
[5] These studies were conducted by the team at AASPIRE. They have recently published a guide for including autistic adults as co-researchers.
References
Baum, F., MacDougall, C., & Smith, D. (2006). Participatory action research. Journal of Epidemiology & Community Health, 60(10), 854-857. Full text.
Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.
Griffith, G. M., Totsika, V., Nash, S., & Hastings, R. P. (2012). ‘I just don’t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood. Autism, 16(5), 532-546. Full text.
Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism. Full text.
Ne'eman, A. (2010). The Future (and the Past) of Autism Advocacy, Or Why the ASA’s Magazine, The Advocate, Wouldn't Publish This Piece. Disability Studies Quarterly, 30(1). Full text.
Raymaker, D.M., McDonald, K.E., Ashkenazy, E., Gerrity, M., Baggs, A.M., Kripke, C., Hourston, S., & Nicolaidis, C. (2017). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, (8):972-984. Full text.
Steward R. L. (2015). Repetitive stereotyped behaviour or ‘stimming’: An online survey of 100 people on the autism spectrum. Paper Presented at the 2015 International Meeting for Autism Research. Full text.
Ward, M. J. (2005). An historical perspective of self-determination in special education: Accomplishments and challenges. Research and Practice for persons with Severe Disabilities, 30(3), 108-112. Full Text.
Nicolaidis, C., Raymaker, D.M., McDonald, K., Baggs, A.E.V., Dern, S., Kapp, S., Weiner, M., Boisclair, W.C., Ashkenazy, E. (2015) “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism: The International Journal of Research and Practice. 19(7);824-831. Full text.