Representing Autism: Culture, Narrative, Fascination
Stuart Murray’s Representing Autism is less about autism than it is about the culture that creates the idea of autism. It is less about the experiences of people with autism than it is about how celebrities, journalists, parents of people with autism, and experts create narratives about autism and thus construct its meaning. It is less about trying to discover answers to autism than it is about critically examining the kinds of questions posed in relation to autism. In this sense autism becomes a lens through which to examine dominant culture or, as many autistic activists often put it, the NTs (neurotypicals). This is a book about normals, and about autism as normals construct it.
It is about the multiple and shifting faces of autism the idea.
Perhaps the best way to explain the contribution of Representing Autism is to share some of its findings:
–. Autism is typically characterized as a difference from the norm, and is experienced by the dominant culture as a “worry and a fear” (3).
–. Autism is a “current concern” and also an “alien phenomenon, something that seems to have come from nowhere” (2).
–. Autism is popular; it appears frequently in news accounts, magazine articles, television and radio talk shows, theatre productions, and film.
–. Autism is often characterized as having a tragic impact on the family; it is even said to ruin families (15).
–. Autism, like other developmental disabilities, has received relatively little attention from the field of Disability Studies where physical impairment dominates scholarly discussions.
–. Autism serves the purpose of helping to define normalcy; “fascination with the subject must always be in the terms of the majority audience” (13).
–. “That which is known about autism—by anyone, in any field—is probably in its infancy.” While there may be agreement that there are neurological bases for autism and that there could be a genetic aspect to it, “there are countless unknowns” (21).
–. Autism invites a kind of voyeurism, where “the person is … viewed as the complex host of the condition” and is “open to study” (31).
–. Popular culture accounts of autism paint it as an assault on children and primarily as a condition of children. [End Page 107]
–. Autism is popularly framed as a unitary condition to be found and eradicated, to be discovered and cured.
These are just a handful of the dozens of critical, interpretive findings that Murray puts forward in Representing Autism.
As I have written in my own work on the sociology of autism, metaphor is ubiquitous, beginning with the very term autism, which implies that the person is an island to him or herself. More recently, news accounts characterize autism as an epidemic. And in professional circles, it is often said that the person labeled autistic is “mind blind” (i.e. unable to imagine that others may have different perspectives from their own). These are some of autism’s metaphors and it is worth noting that science is nearly as guilty as popular culture of generating and perpetuating metaphors, and simultaneously of ignoring or minimizing the importance of the autistic perspective.
As Murray explains, the one consistent feature of films and other creative representations about autism is that in nearly all of them, the person with autism and the perspective of the person with autism are nowhere to be found. Raymond, in the film Rain Man, displays remarkable skills of calculation, for example—this reaches an absurd level when Raymond is shown naming the number of toothpicks that fall on the floor at a diner—yet viewers never learn what Raymond feels when sent off on a train back to institutional exile. In classic cinematic form, autistic Raymond has done the work of humanizing the protagonist, his brother Charlie Babbitt, and so can be dispensed with, as if he has no feelings.
Murray explains how ideas about autism are rooted in particular times and particular cultural circumstances, and yet the condition is most often represented outside of history and social context. He suggests that the relative lack of social knowledge about autism, and especially about how people with autism themselves reflect on the disability and their interaction with the world, allows enormous license for others to construct autism as they want. Thus it is, for example, that when a parent kills an autistic child, something that Murray points out has happened more than once, blame is seen as appropriately originating in the autistic child and not in a society that fails to provide effective, inclusive programs for children with autism; indeed a social explanation is invariably absent. To take another example, Murray discusses the gendered nature of support provision for children with autism; the work is placed at mothers’ doorsteps, in effect insisting on the mother’s role as domestic and unpaid teacher. In this sense, accounts of heroic parents as well as ruined parents are commentaries on notions of mothering and gendered familial relations. [End Page 108]
At moments in my reading of Representing Autism, I longed for Murray to go into greater depth on the nastiness of many professional debates in autism, for example over findings related to causation or best treatments. Also, I hoped for a thorough debunking of the ways in which experts frequently apply the metaphor of mental retardation to people with autism. Yet even without these particular elements, Murray’s Representing Autism is a profoundly important book on the cultural meanings and uses of autism. Indeed, it is the most comprehensive and deeply argued analysis of its kind.
In the concluding passages of Representing Autism, Murray proposes a remedy to the curious position of autism in popular culture. Change will come, he argues, not with better science—there will always be autism despite rhetoric about cure—or more sensitive film-making and novel-writing, although this would be nice, but with the advent of a powerful autism rights movement, the seeds of which can already be seen in organizations such as the Autism Self Advocacy Network, Aspies for Freedom, Autism Network International, and the Autism Acceptance Project. From this movement will come provocative narratives that reflect experiences of actual people with autism, for example espousing a politics of neurodiversity as ‘normal’. Of course even these will deserve critique, for there can be no such thing as a real version of autism; even the person with autism necessarily constructs autism from a position of subjectivity, albeit his or her own. [End Page 109]
Douglas Biklen is Dean of the School of Education and a founding member of the programs in Disability Studies at Syracuse University, New York (email@example.com). His most recent book is Autism and the Myth of the Person Alone (2005) and he was co-producer of the Academy Award-nominated documentary Autism Is a World (2004). Among his other books are Communication Unbound (1993) and Schooling without Labels (1992). He is currently working on several new documentary film projects on disability and communication rights.