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Movements that take issue with conventional understandings of autism spectrum disorder, a developmental disability, have become increasingly visible. Drawing on more than three years of ethnographic fieldwork and interviews with participants, Catherine Tan investigates two autism-focused movements, shedding new light on how members contest expert authority. Examining their separate struggles to gain legitimacy and represent autistic people, she develops a new account of the importance of social movements as spaces for constructing knowledge that aims to challenge dominant frameworks.
Spaces on the Spectrum examines the autistic rights and alternative biomedical movements, which reimagine autism in different and conflicting ways: as a difference to be accepted or as a sickness to treat. Both, however, provide a window into how ideas that conflict with dominant beliefs develop, take hold, and persist. The autistic rights movement is composed primarily of autistic adults who contend that autism is a natural human variation, not a disorder, and advocate for social and cultural inclusion and policy changes. The alternative biomedical movement, in contrast, is dominated by parents and practitioners who believe in the disproven idea that vaccines trigger autism and seek to reverse it with scientifically unsupported treatments. Both movements position themselves in opposition to researchers, professionals, and parents outside their communities. Spaces on the Spectrum offers timely insights into the roles of shared identity and communal networks in movements that question scientific and medical authority.
PUBLICATION DATE: 23 JAN 2024
Reviews
At the margins of the autism world, there are niches where vaccines are rejected, miracle cures are peddled, or on the contrary, all therapies are rejected as forms of coercive normalization. “Spaces on the Spectrum” analyzes the moral experiences, rhetorical strategies, and advocacy practices of two groups that occupy opposite niches: parents who experiment with alternative therapies and autistic self-advocates. Catherine Tan went down the rabbit hole and came out bearing fascinating stories and insights. Written with generosity and poise, meticulously researched, this is a reflective and insightful analysis of how controversies over knowledge, expertise, and identity are intertwined.
—Gil Eyal, coauthor of The Autism Matrix
With engaging data, compelling stories, and compassionate insight, Tan brings us into the competing and complementary worlds of autism advocacy. “Spaces on the Spectrum” provides an important exploration of how two different world views of autism have led parents of autistic children and autistic adults to dramatically different beliefs about what causes the condition, what it means, and what, if anything, should be done. This is an important contribution that shows how knowledge production is contentious, how meanings of expertise can be multifaceted and contradictory, and how calls for sympathy and respect can place well-intentioned people who care deeply about the same issue at odds.
—Jennifer A. Reich, author of Calling the Shots: Why Parents Reject Vaccines
In this phenomenal study, Catherine Tan explores two autism social movements hoping for a better world: parents of children diagnosed with autism embracing alternative treatments and adults living with autism advocating for acceptance and accommodation of neurodivergence. What the believers and participants find instead is support, community, and validation that they have been right after all. With grace and sensitivity, Tan deftly weaves their convictions, struggles, and joys into a nuanced analysis that demonstrates the best medical sociology has to offer. Also, a magic buffalo appears.
