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 investigate the importance of science to parents of young, recently diagnosed autistic
(In this abstract, I use "autism" as a shorthand for all autism spectrum disorders, and "autistic" as a descriptor for people diagnosed with those disorders. See Chapter 2 for a more complete description of the autism spectrum.)
children, and develop a conceptual model that describes their efforts to connect science with their own experience. I start with a critical review of research on science literacy and public understanding of science. Engagement, I suggest, is a more fruitful way of thinking about the relevance of science to daily life. Drawing on established uses of the word engagement in psychology, sociology and political science, I offer a new definition of engagement with science: the intrapersonal and interpersonal process of connecting science with deeply situated experience.
This definition guided my research with parents of children with autism, a psychiatric disorder characterized by deficits in communication and social interaction, and by restricted or repeated interests and behaviors. Although autism is quite common, there is still no scientific or medical consensus on etiology, diagnosis or treatment. Parents whose children are diagnosed with autism must make sense of this uncertain terrain, choosing the questions that matter most to them and finding resources to help answer their questions. By examining their questions and resources (manifestations of the intra- and interpersonal work of engagement), and by exploring the factors that lead them to think and act differently, I sought to identify an underlying structure that would usefully guide future research on engagement with science.
Working with a local psychiatric clinic, I recruited a socio-economically diverse sample of ten parents (eight mothers and two fathers), representing ten different families. Each parent had at least one child between the ages of eighteen months and seven years who had been diagnosed with autism between six and twenty-four months prior to recruitment. Over the approximately six months following recruitment, each participant completed a series of semi-structured telephone and in-person interviews. Interviews were transcribed and analyzed using a combination of grounded theory and conceptually driven coding strategies.
The interviews revealed a strong undercurrent of common experience. 90% of parents' questions could be divided up into three categories (behavior, treatment and explanations), and all but two parents devoted considerable attention to each category. Media, such as books, magazines and the internet, were mentioned frequently but represented less than a third of the resources that parents listed, with the remainder being people such as the child's doctor or other parents of autistic children. Two factors of a parent's unique circumstances seemed to exert a particularly strong influence on both questions and resources: prior exposure to autistic children and the availability of resources at the county and district level.
Only a small fraction (15%) of parents' questions were science questions: questions that concerned the state of scientific knowledge or could be answered entirely by scientific research. More than twice as many (41%) were near-science questions: questions that could be informed but not answered by scientific research. Most near-science questions focused on a child's specific symptoms or therapies. Similarly, a small fraction of parents' resources (11%) were science resources: researchers or specialist doctors who could be expected to follow autism research. A much larger fraction (42%) were near-science resources: people such as pediatricians, behavioral therapists and other parents of autistic children who were regularly exposed to autism research, but not professionally responsible for tracking it.
Half of the parents in the study exhibited an iterative pattern of question-posing and resource-gathering that I called progressive engagement with science. Over the course of days, weeks or months, these parents asked a series of science or near-science questions that developed and changed in response to information from a shifting pool of resources. Parents who did not do this were also distinctly less interested in autism as an organizing construct for understanding their children were different. For some, this meant a broader ambivalence about the idea of autism, while for others it simply meant a preference for working narrowly within the school and healthcare systems to get the best available services - diagnosis notwithstanding.
To help explain why parents engaged with science so differently, I borrowed the idea of trading zones from the historian Peter Galison. Galison, who studied the history of particle physics, found that research groups could still trade data and collaborate on common projects despite having radically different ideas about the nature of matter and evidence. He referred to those common projects, and the locations where they occurred, as trading zones. I contend that engagement with science is a similar sort of trading work. My findings suggest that parents and medical scientists inhabit different social systems, in which words like "autism" have different connotations. Parents who ask near-science questions must find near-science resources to help them direct their questions appropriately, and 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 helps create a trading zone and enables future engagement with science.