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Anticipating Autism: Navigating Science, Uncertainty, and Care in the Post-Genomic Era

  • Author(s): Lappe, Martine Danielle
  • Advisor(s): Clarke, Adele E
  • et al.
Abstract

In the United States, diagnosed cases of autism have increased more than ten fold over the past four decades. This dramatic change has become the source of considerable controversy, raising questions about what lies behind these rising numbers. These debates have spurred new directions in research on the causes of autism, including epidemiologic studies focused on environmental factors and gene-environment interactions.

This dissertation provides a sociological study of the emergence, practices, and consequences of autism gene-environment interaction research. Using participant observation, document analysis, and interviews with scientists, advocates and mothers of children diagnosed with autism, I argue that autism gene-environment interaction research is situated within a larger social and scientific process I call anticipating autism. Building on scholarship in medical sociology, science and technology studies and social theory, this process captures how autism is increasingly being produced as a possible future that should be preemptively considered, acted upon and engaged in the present.

My findings detail how this process is taking place across sites of knowledge production, scientific practice, autism diagnosis and family life. In particular, I describe how advocacy efforts, science, and family experiences of autism facilitated new approaches to the study of the condition. Following a prospective epidemiologic study focused on autism risk factors during fetal development and early childhood, I show how gene-environment interaction research is shifting understandings of autism both spatially and temporally. Finally, I describe how, for mothers of children diagnosed with autism who are expecting another child, research participation becomes a practice in caring for specific children, being a "good mother," and preparing for the future. These findings reflect changing relationships between science, uncertainty and care in the post-genomic era. This dissertation contributes to the fields of sociology and science and technology studies.

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