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

Chloe Silverman's book approaches the history and politics of autism in terms of "the affective content of practices associated with it" (p. 3)—predominantly the practices of research, treatment, and advocacy. This focus on affective content, or emotional commitment, or indeed love (Silverman's preferred term), provides the common theme for an analysis of the often highly polarized controversies surrounding the range of conditions known today as autism spectrum disorders (ASD).

Since the latter part of the twentieth century, parents—in some cases individually but mostly through organized lobbying—have played a significant role in shaping autism research agendas. One important source of resistance to this influence has been the perception by many professionals that parents' emotional investment in their autistic children's welfare prevents them from reliably observing their children's behavior or rationally evaluating matters relating to the causation and treatment of autism. Silverman argues, however, that just as scientific research is a mixture of rational procedure and emotional commitment, so too is the search by parents for appropriate treatments and educational programs for their autistic children. The rationality of such parents is in most cases experientially, rather than theoretically, based; but it is nonetheless worthy of respect and has in many cases led to new insights on the part of professionals who have taken it seriously.

This general thesis is well documented by Silverman for the case of autism, and would no doubt apply also to other disabling conditions, but on the whole she overstates the rationality of parents to the point of idealization—just as was often done, until recently, in characterizations of the rationality of scientists. As the parent of a child with autism I am flattered by Silverman's hyperbole, but I know from my interactions with many other such parents, as well as from introspection, that most parental decisions about their autistic children arise from mixed motives, and that the emotional investment involved is not limited to love, central though that is. There can also be self-interested motives such as proving oneself right and certain other people—whether unhelpful professionals or other parents who see the world differently—wrong; or receiving recognition for one's achievements in helping one's child; or gaining a position of influence in an advocacy group or other organization. These are all factors that, mutatis mutandis, can also motivate research scientists and sometimes skew their rational judgment, so there is no reason to overlook them in the case of parents.

This caveat aside, Silverman's book presents a vivid picture of the ongoing and somewhat dialectical (in the Hegelian sense) relationship between parents of autistic children and professionals who specialize in autism. Two limitations should be noted, however. The role of self-advocates, that is adults with ASD, who differ in their perspective both from parents and from professionals, is noted in passing but is not part of Silverman's story; and the scope of her book is entirely American, although this is not signaled in the title.

After a summary history of medical conceptions of autism from the first identification of the disorder in the 1940s to its anticipated description in the forthcoming DSM V, the book devotes a chapter to Bruno Bettelheim, a figure of commanding influence in his day but now much reviled. Given the one-sided condemnation of Bettelheim since his death in 1990, it is to Silverman's credit that she provides balanced information about the strengths of his psychoanalytic approach to autism as well as its weaknesses. Her final historical chapter concerns the work of a number of parents of autistic children in the latter decades of the twentieth century who devised their own approaches to treatment and education, in the absence of adequate services for their children, or who put new ideas about autism on the scientific agenda.

The second half of the book contains three chapters on...