Individualizing Children Who Are Diagnosed with Autism Spectrum Disorders

• In Event: STS and the Subject

Abstract

In communities where ASD has become familiar, a shibboleth is, “If you know one child with autism, you know one child with autism.” Yet clinical diagnosis, in the quest for standardization (and, hence, reliability and validity) often misses the truth that the saying captures. This paper addresses the conference theme of “how STS can interrupt and provide critical perspectives on entrenched ideas, helping innovate alternative pathways” by investigating the deployment of a biomedical technology considered to be the “gold standard” instrument for ASD diagnosis, the Autism Diagnostic and Observation Schedule (ADOS). Drawing from STS studies, ethnomethodology, Hacking’s notion of “making up people,” and other theoretical resources, we explore how the ADOS reinforces rather than questions difference as disability. Importantly, this is not just the outsider/researcher formulating critiques of testing and diagnosis. Rather, we are collaborating with experts in instrument development and clinical treatment, who are also deeply concerned with issues of individualization of diagnosis, and who are looking for the kinds of tools our STS investigation can offer. By posing “emergent technologies” in technology and assessment, the project may lend to the greater participation of ASD individuals in society, and to the widening of experience for typically-acting members as well. This enterprise is consistent with other efforts, such as those on behalf of “neurodiversity," to see autism, and those who identify as having ASD, as a way of being, rather than solely a disability.

Authors

• Doug Maynard, University of Wisconsin

• Lucas Wiscons, University of Wisconsin-Madison