Understanding Autism: Parents, Doctors, and the History of a Disorder by Chloe Silverman (review)

Discussions of autism have proliferated in recent years in academic and medical fields, as well as popular media. Chloe Silverman’s Understanding Autism: Parents, Doctors, and the History of a Disorder interjects a thoughtful look into these ongoing conversations. While not situating herself as an oral historian, Silverman utilizes different voices to access the story of how parents, psychiatric practitioners, therapists, and doctors in the United States created the classification of autism and then negotiated its medical and social interpretation. The aim of her work is to interrogate the emergence of autism as a diagnosis, as well as the resulting behavioral programs and research agendas, in order to understand the ways in which parents and caregivers have navigated this varying and often fraught terrain. Understanding Autism is split into two parts: the first, a history of autism diagnosis, treatment, and research; and the second, a rumination on issues and ideas in contemporary discussions of autism.

Although Silverman’s account centers on autism in childhood and its impact on families, she does not spend significant time with individuals who have been classified as having autism. Instead, her narrative combines interviews with parents and caregivers with an analysis of medical records, texts, and interventions. Silverman’s emphasis is on how medical processes are implemented and their social effects; with this focus, she effectively pieces together narratives and histories in a way that has not been done before in academic work on autism. Take, for example, her exploration of the nature-versus-nurture debate in the diagnosis of autism: while some leading experts sought a genetic basis for this disease, others placed parental behavior as one of the central causes of autism. Because, as Silverman argues, “autism functioned as a focal point for ideas about motherhood, childhood, and development in twentieth-century America,” nurture ideas placed increasing pressure on mothers to show love to their children the “right way” (63). The stereotype of “refrigerator mothers,” denoting mothers who are cold and therefore are assumed to cause emotional problems in their children, originated from this same ethos. Interestingly, Silverman notes that Bruno Bettelheim, an influential figure in the study of autism treatment, is most likely the person who developed this way of categorizing mothers and theorized about the role of love in autism diagnosis that still exists today. His personal papers and writings, alongside the parental memoirs, helped Silverman piece this narrative together.

Just to reemphasize the point: Silverman is not an oral historian. An oral history ethos, however, is present in Understanding Autism, especially in Silverman’s use of and clear respect for the personal memoirs of parents with autistic children. She uses memoirs both to build an account of these parents as “amateur experts” in autism treatment and to demonstrate the role of knowledge-sharing between the amateur experts and the neophytes who are only starting to experience life with an autistic child. While most parents of children with autism do not have the same clinical or medical knowledge as physicians and other medical practitioners, they do have a much more in-depth knowledge of their own children, a way of knowing and understanding that Silverman calls “situated knowledge” (99). She argues that “the unpaid, home-based labor of parents that is required by our healthcare system also contributes to parents’ legitimacy as experts about their children” (17). In this way, situated knowledge makes parents into amateur experts on autism. Silverman also finds that parents new to living life with an autistic child used the memoirs of parents with situated knowledge as guides because they “found themselves with few resources other than each other in learning to treat their children” (94). Even through her discussion of vaccines and autism, a widely controversial subject, Silverman does not devalue the testimony of parents of children with autism; she argues instead that doctors who wholly dismiss the stories and opinions of parents who are vaccine critics “act...