Parents, Doctors, and the History of a Disorder
Autism has attracted a great deal of attention in recent years, thanks to dramatically increasing rates of diagnosis, extensive organizational mobilization, journalistic coverage, biomedical research, and clinical innovation. Understanding Autism, a social history of the expanding diagnostic category of this contested illness, takes a close look at the role of emotion--specifically, of parental love--in the intense and passionate work of biomedical communities investigating autism.
Chloe Silverman tracks developments in autism theory and practice over the past half-century and shows how an understanding of autism has been constituted and stabilized through vital efforts of schools, gene banks, professional associations, government committees, parent networks, and treatment conferences. She examines the love and labor of parents, who play a role in developing--in conjunction with medical experts--new forms of treatment and therapy for their children. While biomedical knowledge is dispersed through an emotionally neutral, technical language that separates experts from laypeople, parental advocacy and activism call these distinctions into question. Silverman reveals how parental care has been a constant driver in the volatile field of autism research and treatment, and has served as an inspiration for scientific change.
Recognizing the importance of parental knowledge and observations in treating autism, this book reveals that effective responses to the disorder demonstrate the mutual interdependence of love and science.
May 11, 2016
Drexel University professor Chloe Silverman, PhD, will serve as co-principal investigator on a recently funded grant for autism research. Professor Silverman is the author of "Understanding Autism: Parents, Doctors, and the Understanding of a Disorder."
Silverman will work as part of a dynamic research team, which includes Paul Shattuck, PhD, and Collette Sosnowy, PhD, from Drexel University, and Connie Anderson, PhD, from Towson University. This research is funded through the Organization for Autism Research. We sat down with Silverman to hear more about her research and this particular project.
Q: First, congratulations on your research grant!
A: Thank you! We’re really excited about the project and thrilled that OAR wants to support it.
Q: So tell us more about this particular project; what exactly is your team’s research question?
A: OAR is funding the Autism Transitions and Outcomes Collaborative, two related projects at Drexel University (Paul Shattuck, Collette Sosnowy, and myself) and Towson University (Connie Anderson). The project seeks to contribute to knowledge about young adults with autism, an area that is under-researched at present. Epidemiological studies (including, significantly, work by Paul Shattuck and Anne Roux) have established that young adults with autism spectrum disorders (ASDs) have trouble entering and staying in college and maintaining employment, and that they are often unable to access the services that might enable them to thrive. However, we lack qualitative information about the specific experiences and values of young people with ASDs that might inform improved services and supports.
The work at our two sites is complementary. At Drexel our project - Measuring What Matters, seeks to characterize how different stakeholder groups, meaning young adults with ASDs, their parents, service providers and advocates, characterize good and poor outcomes in the transition from high school to young adulthood. If values regarding outcomes are aligned or differ among these groups, this is important to account for in designing measures to evaluate programs and services. At Towson University, Connie Anderson’s work is aimed at developing a model to describe what individual, family and community characteristics make young people vulnerable to disengagement or the experience of being disconnected from education, social relationships or employment.
Q: What sort of evidence is your team looking for, and how do you plan to collect evidence?
A: At Drexel, Collette Sosnowy, the lead on Measuring What Matters, has been conducting open-ended semi-structured interviews with members of the three stakeholder groups that we have identified—she has nearly completed the interviews with parents and is well into the interviews with young adults. Data will be analyzed using qualitative data analysis software, using a grounded theory approach to coding. We are also using a survey to collect demographic data on participants. I have been using my startup funds to support a wonderful research assistant in Public Health, Katherine Lynn, who has been helping with the survey, data processing and data analysis—she has prior experience with qualitative data analysis, which is a huge asset.
Q: Any working hypotheses yet?
A: We have only just begun data analysis; the funding from OAR will support data collection in our third group, service providers.
Q: How do you think this research project will build upon your earlier work on understanding autism?
A: All of the members of our research team have different specific interests—for example, Collette Sosnowy is interested specifically in healthcare access and the impact of co-occuring conditions, and Paul Shattuck heads the Research Program in Life Course Outcomes at the Drexel Autism Institute, so this is only one of the many projects in this area that he is involved in.
When I completed my book, "Understanding Autism", I decided that I wanted the next work that I did on autism to have a collaborative component. So much of what I’d ended up writing about involved the divergent ways that different groups of professionals and non professionals characterized autism, and the problem of translating different ways of understanding autism across different professional and social communities. I thought that it would be interesting and potentially valuable to see what my experience with these problems of translation could bring to a collaborative project. I also concentrated mainly on childhood in my book because so much autism research is focused on childhood, which is seen by many professionals as the key moment for treatment programs. This means that researchers neglect adults with autism, just as those adults have often been neglected by our social structures because of the absence of services and supports after they “age out” of the educational system. I didn’t want my future research to reproduce that neglect.
Q: What are you hoping this particular project will add to our understanding of autism?
A: Our hope is that the two projects together will enhance our understanding not only of the challenges that young adults with autism face during the post-high school transition and some contributing factors, but also how best to support them and allow them to flourish. It would be really interesting if the project at Drexel in particular, helped us understand where young adults, their parents and service providers agree and disagree about what achievements are most important in young adulthood, which will in turn give us a better sense for how to best serve young adults. For example, young adults might consider it more important that they are able to find an employer who values their unique sets of skills than they are with having an active social life, while service providers might think that social connections are paramount; this matters in terms of how programs are designed.
Q: Finally, are there any other projects that you are working on? Do you have any other research irons in the fire or classes that you are really excited to teach?
A: Yes. Michael Yudell and I recently submitted a proposal to NSF’s CCE-STEM Program (Cultivating Cultures of Ethics in Science, Technology, Engineering, and Medicine). It’s for a study of how commitments to practices of community engagement are associated with researchers’ beliefs about autism spectrum disorders and the ethical conduct of autism research.
I’m also teaching a STS Lab course this spring quarter on neurodiversity and intersectionality. It’s a research practicum - students will have the opportunity to spend the quarter doing collaborative work on a research project. The spring quarter project will involve reviewing and analyzing different self-advocacy curricula and training materials.
Chloe Silverman is an Associate Professor in the Department Politics and a member of the STS Program. She works in three related areas, which inform her choice of research topics and the courses she teaches. Most centrally, she studies the role of affect in scientific knowledge, how public claims about affect are used to establish authority, and the role of affect as an analytic tool and method in science studies. The second area, the productive entanglements between so-called “lay” and “expert” knowledge, emerges from her work on affect, because the social movements that have engaged medical authorities and patient groups have almost always had an affective dimension. Third, she looks at the modes through which information about scientific practice—as opposed to scientific findings—is communicated to different publics. Discourse about what science is or ought to be shapes both peopleʼs reception of scientific information and their personal investment in science as a form of knowledge.
Silverman’s research topics, including parent advocacy for autism and pollinator health research, serve as ways to explore these problems. In doing so, she uses a range of methods, including archival research, participant observation, open-ended interviews, and the close analysis of texts. She specializes in working collaboratively with scientists as a key means of studying scientific communities.
