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Open Access Publications from the University of California

On The Spectrum: Autistics, Functioning, and Care

  • Author(s): Moore, Matthew J
  • Advisor(s): Clifford, James
  • et al.
Creative Commons 'BY-NC-ND' version 4.0 license

On the Spectrum explores the recent flourishing of autistic self-advocates as social actors, stakeholders, and co-creators of autism worlds. In the contentious and contradictory discourses surrounding autism, it considers ways that all participants - medical practitioners, researchers, educators, parents, and autistics - are interested actors. To understand how and why autism worlds both overlap and diverge, contemporary concerns are examined in terms of inherited legacies from earlier historical `turns.'

In recent decades, an autism `spectrum' and `epidemic' emerged together as some parent-advocates redirected efforts toward development of biomedical treatments. Autistic self-advocacy simultaneously emerged as a social movement, where previously there had been virtually no recognizably autistic voices heard publicly. Self-advocates locate themselves in relation to powerful discourses shaped by psychiatry, bio-medicine, and "cure autism now" parent advocacy organizations. Rather than minimize the distance between what have come to be known as pro-cure and pro-acceptance (or neurodiversity) positions, On the Spectrum sustains the tension as necessary for movement toward a re-articulation of contentious encounters.

The analytic work is grounded by engagement with autistic self-advocates and participant-observation at autism conferences. Professional, community, and policy meetings are described as important sites of negotiation where public discourses reflect multiple personal and ontological commitments. Actors engage one another in an effort to reformulate ways of talking about and living with autism, understood variously as disease, disability, and difference. A theoretical framework is assembled to consider how autism simultaneously exists as a behavioral disorder and biomedical disease, alongside emergent formulations of autism and autistic personhood which are significantly depathologized. It shows how autism becomes recognizable as a diagnostic category, boundary object, cultural resource, and biosocial entanglement.

In the conclusion, an idiom of situated functioning is proposed as a way to rethink normative assessment practices, where notions of intelligence and functioning are understood to be personal qualities and contained fully within individuals. In contrast to how autistic populations are typically labeled as either high-functioning or low-functioning, a non-binary twining of facilities and difficulties productively disrupts the tendency to talk and think about assessment as locating fixed attributes and the upper limits of individual potential.

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