Who Owns Autism? Exceptionalism, Stigma, and Stakeholders

This presentation focuses on critical themes and challenges in the cultural study of autism spectrum disorder (ASD). First, in clinical, research, and advocacy settings ASD has emerged as a singular and powerful construct that encompasses an increasing number of heterogeneous phenomena. What forces made this category possible? How did it become both a valid and unstable construct? Second, the growth of genetic and other biomedical perspectives on ASD risks reducing ASD to biology alone, and, as a consequence, masking the fact that scientific representations express cultural values about diversity and disability. Difference constructed on the molecular level is still difference, no less stigmatizing and socially consequential because of its biological source (and perhaps even more so). How can we integrate both the biological and sociocultural aspects of ASD into research? Third, ASD is now, in some respects, a commodity that circulates in an industry of “stakeholders,” such as therapists, producers of high-cost diagnostic tools, and advocacy organizations. Indeed, as health professionals are discovering in low- and middle-income countries, few diagnostic categories cost as much as ASD. How does the economy of ASD influence the science of ASD?