This dissertation research, supported by the Science, Technology & Society Program and the Biological Sciences Directorate through the Biology & Society initiative at NSF, examines perceptions and understandings of autism. Once thought of as a rare disorder, autism has skyrocketed in prevalence over the past twenty-five years, with 2007 figures placing prevalence rates as high as 1 in every 150 to 155 Americans. This increase in diagnosed cases has mobilized massive research efforts to understand, and eventually to prevent or cure, the biological and genetic bases of autism. However, a growing 'neurodiversity' movement among autistic self-advocates argues that autism ought to be reconceptualized in a radically different paradigm. Calling upon the language of minority identity and drawing parallels to prior civil rights movements, such self-advocates redefine autism as a critical and pervasive element of personhood, demanding accommodation and protection against attempts at elimination through biological and genetic intervention. The result of this conflict has been a contentious public debate over how autism ought to be defined, and what kind of response it requires. Little research, however, has systematically investigated the impact of these issues on the lives and work of those personally and/or professionally involved with the autism spectrum.
This project is an ethnographic study using participant observation and interviewing in a variety of sites where definitions of autism spectrum disorders are actively negotiated, disseminated and deployed. Sites for sustained fieldwork include a private school run by a person on the autism spectrum, a public school classroom, a clinic, and a research center; shorter-term observation and interviews will be conducted at a variety of national conferences, support groups, community centers, and resource coordination meetings. The researcher will also be monitoring and archiving public discussions on Internet weblogs and forums. The project aims to answer the following questions: 1) How are ideas about bodily disease and identity used in the sites where knowledge about autism is created and deployed?; 2) How are these models used by people who are themselves diagnosed with autism spectrum disorders?; 3) Do conflicts arise between these discourses? How are these conflicts managed?; 4) What are the possibilities for other, alternative ways of viewing autism that do not engender these conflicts and ambivalences between scientific innovations and the individuals they are meant to serve? This research stands to inform general publics interested in understanding the autism spectrum, as well as to contribute to the scholarly literature on the social study of disease.
