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Scholarly Works (3 results)

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  • Peer Reviewed
UC San Francisco Electronic Theses and Dissertations (2012)

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.

    Cover page: Anticipating Autism: Navigating Science, Uncertainty, and Care in the Post-Genomic Era
    • Article
    • Peer Reviewed
    UCLA Previously Published Works (2018)
    OBJECTIVES:Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by challenges in social communication and interaction and restricted or repetitive behavior, interests, or activities. Although ASD symptoms generally manifest in early childhood, many individuals experience delays accessing an autism diagnosis and related services. In this study, we identify the individual, social, and structural factors that influence parents' experiences of children's ASD diagnosis. METHODS:Parents of 25 children with autism participated in 60- to 90-minute semistructured in-person interviews. Interviews were recorded and transcribed verbatim. Transcripts were analyzed using the method of grounded theory. This inductive method allowed analysts to identify key themes related to participants' experiences of children's ASD diagnosis. RESULTS:The process of ASD diagnosis reflects an odyssey that includes 3 key phases: the prediagnosis phase, in which "Making Sense of Child Difference" is a primary characteristic of participants' experiences; the during-diagnosis phase, when "Navigating Diagnosis" suggests systematic barriers that influence the timing of ASD diagnosis; and the postdiagnosis phase, when participants' experiences of "Connecting to Services" point to the important role that personal efforts play in gaining access to care. CONCLUSIONS:In this study, we highlight individual, social, and structural factors that influence parent experiences before, during, and after their child's autism diagnosis. Our findings indicate the need for more consistent and continuous support for autistic individuals and their families during the diagnostic odyssey, as well as resources that better represent the diversity of experiences and symptoms associated with autism across the life course.
      Cover page: The Diagnostic Odyssey of Autism Spectrum Disorder
      • Article
      • Peer Reviewed
      UC San Francisco Previously Published Works (2014)
      In this article, we explore current thinking and practices around the logics of difference in gene-environment interaction research in the post-genomic era. We find that scientists conducting gene-environment interaction research continue to invoke well-worn notions of racial difference and diversity, but use them strategically to try to examine other kinds of etiologically significant differences among populations. Scientists do this by seeing populations not as inherently homogeneous or heterogeneous, but rather by actively working to produce homogeneity along some dimensions and heterogeneity along others in their study populations. Thus we argue that homogeneity and heterogeneity are situational properties--properties that scientists seek to achieve in their study populations, the available data, and other aspects of the research situation they are confronting, and then leverage to advance post-genomic science. Pointing to the situatedness of homogeneity and heterogeneity in gene-environment interaction research underscores the work that these properties do and the contingencies that shape decisions about research procedures. Through a focus on the situational production of homogeneity and heterogeneity more broadly, we find that gene-environment interaction research attempts to shift the logic of difference from solely racial terms as explanatory ends unto themselves, to racial and other dimensions of difference that may be important clues to the causes of complex diseases.
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