Coming to grips with autism: Parents engaging with science.

When and how does science matter to people in their everyday lives? In this dissertation, I explore the importance of science to parents of young children recently diagnosed with autism. I examine the questions parents ask and the resources they use as they attempt to understand and advocate for their children, and use this data to develop a new conceptual model of engagement with science: the intrapersonal and interpersonal process through which people connect science with their lived experience. I recruited a socio-economically diverse sample of ten parents, each with at least one young child (18 months--7 years) who had been diagnosed with autism 6--24 months prior to recruitment. Each parent completed a series of 8--12 semi-structured interviews over a period of approximately six months. These interviews were analyzed using both grounded theory and conceptually driven coding strategies. Two findings stand out. First, only a small fraction of parents' questions (15%) and resources (11%) were directly related to science. A much larger fraction (41% and 42%) fell into the broader categories of near-science questions and resources. Second, half of the parents demonstrated an iterative pattern of activity that I referred to as progressive engagement with science. In each case, a science or near-science question led the parent to a science or near-science resource, which transformed the question. The new question led to different science or near-science resources, which led to new questions and so forth. Parents who did not undertake progressive engagement with science were also less interested in autism as an organizing construct for understanding their children. Drawing on the work of Peter Galison, I propose that the idea of autism helps create a "trading zone" between the distinct social systems of family life and medical science. Parents who ask near-science questions must find near-science resources to help them direct their questions appropriately. They must also re-articulate the answers in terms that are personally meaningful. Even when parents and doctors disagree on the meaning and significance of an autism diagnosis, their mutual investment in the idea of autism fosters conceptual "trading" and enables future engagement with science.