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A Spectrum of Disputes: Framing Autism Activism in Canada and the US

February 28, 2009

Michael Orsini is the Center’s 2008-09 Canada-US Fulbright Visiting Chair from the School of Political Studies, University of Ottawa. His research on autism activism in Canada and the US was the focus of the Henry M. Jackson School of International Studies annual lecture series, Hot Spots in Our World held at the UW on 4 March 2009. The following is a summary of Michael’s current research and lecture.

Using the case study of autism activism in Canada and the US, Michael Orsini’s presentation
at Kane Hall sketched the contours of the contested terrain of autism/autistic activism, asking questions about how to conceptualize autism activism in the field of “health social movements” more generally, and about whether these forms of activism represent a form of continuity or rupture with other social movements organized around combating injustice.

In particular, he examined three branches of the autism/autistic movement. The first is parent-led advocacy efforts centered primarily on “curing” or “treating” autistic people, mainly but not exclusively focused on children. Many of these organizations cling to the notion of an “autism epidemic.” A second branch is often associated with the notion of neurodiversity, and advances a disability rights-based model of autistic self-advocacy and opposes those who want to “cure” autistic people or locate genetic explanations for autism. A third branch, while only loosely associated with autism, is interested in getting the word out about the harm associated with vaccines. Groups such as Generation Rescue and Moms Against Mercury have been influential in the US, where there has been a wave of litigation related to the harms associated with vaccines. Hollywood celebrities such as Jenny McCarthy, the author of best-selling books Mother Warriors and Louder than Words, are in the forefront of attempts to “green” vaccines. McCarthy has also claimed she was able to ‘heal” her son, Evan, by introducing restricted diets.

While activists and advocates are clearly divided on a number of issues, Michael concluded that there might be some common ground worth exploring. One area concerns the interest expressed by many parents in providing care for their children as they transition into adulthood. Indeed, advocates worry that there has been little interest in and support and services for autistic adults. Since autistic children often grow into autistic adults, it is important to imagine and advocate for care and support across the life span. A model focused on the child can obscure the importance of seeing the larger picture.

This lecture was supported, in part, by the Canadian Studies Center Title VI Grant, International Education Programs Service, US Department of Education.