Autism and the Myth of the Person Alone, by Douglas Biklen. New York: New York University Press, 2005.
Autism and the Myth of the Person Alone is one of those rare professional books that causes one to pause and consider what it tells us about our literature, our field, and, perhaps, ourselves. The professional specialty we call “autism” came about through clinical observations by a couple of psychiatrists 60 odd years ago (Asperger, 1944/1991; Kanner, 1943) and has grown into what is now a specialty bordering on an industry. Whether I like it or not, I have the bona fides to comment on how this book fits into the canon of autism, as my career and, coincidentally, my life, have spanned most of the history of autism. I remember a time when I could say that I was familiar with the entire literature on the topic and had met or corresponded with almost all the authors from Creek, Rutter, and Wing in England to Rimland, Schopler, and Lovaas in the United States. I even interacted with analysts as such as Bettleheim and Eisenberg. I once was fortunate to tape an interview with Leo Kanner regarding his thoughts on the early days of autism (Donnellan & LaVigna, 1977).
Today, the field has so expanded that it is now impossible for me or, perhaps, anyone, to claim to be an autism omnivore. The quantity of medical, cellular, biochemical, pharmaceutical, and neuroscientific works on autism, not to say the educational, psychological, and general “how to” literature, is truly overwhelming. Reading Biklen's book, makes one thing clear, however: As a field of specialization, we have paid scant attention to the lived experience of the individuals with the autism label. There are exceptions, of course (e.g., Barron & Barron, 1992; Grandin, 1995; Williams, 1992, 1994), but their very exceptionality proves the rule. Moreover, these first-person accounts are essentially limited to the minority of those with the autism label, those people able to verbally articulate their thoughts. The result of this paucity of reports from those nonverbal folk who represent the largest majority of the autism population is that the literature has developed almost entirely from an outsider perspective. With scarce commentary from the labeled population, we have little to challenge our assumption that our experience of these people we label as autistic is congruent with their reality. Moreover, anything that seriously challenges our reality is either fraudulent (Spitz 1996; Wolfensberger, 1994) or exceptional (Wing, 2000). We tend to assess their experience from our etic perspective, with the emphasis on what they cannot do or they seem to be missing. Moreover, we believe we are getting better and better at understanding autism when we might merely be getting better at agreeing with one another (Donnellan, 1999). It seems self-evident that we need reports that address the emic, or insider, perspective. That is the gap that the book Autism and the Myth of the Person Alone begins to fill.
Biklen has given us a fascinating, thoughtful and, most important, essential book by including insights, experiences, and perspectives of individuals with autism to add to the canon. He is guided by an “optimistic approach” to research (Bogdan & Biklen, 1998; Bogdan & Taylor, 1990) that he spells out beautifully in the first chapter. He uses interviews and the narratives of the contributors. One, Larry Bissonnette, presents his perspective via his art. From all authors, we get a unique look at their world.
The contributing authors are all individuals who were able to type independently or with minimal support and/or able to speak the words they type. This latter group encompasses several whom Biklen defined as having moved beyond the facilitated communication controversy (e.g., Blackman, 1999; Mukhopadhyay, 2000; Rubin et al., 2001). Biklen quoted Beukelman and Mirenda (1998):
In regard to a small group of people around the world who began communicating through facilitated communication and are now able to type either independently or with minimal, hand-on-shoulder support … there can be no doubt that, for them [facilitated communication] “worked,” in that it opened the door to communication for the first time … For them, the controversy has ended. (p. 327)
All these authors provide provocative insights about autism that challenge much of what we believe we know. Often they confront our assumption that we can know if and what a person is thinking from their observable behavior. Their comments are eerily reminiscent of the individuals with postencephalitic Parkinsonism chronicled so well by Oliver Sacks in Awakenings (1990). They are particularly concerned that we are misinterpreting their intellectual ability and their interest in relationships because we do not understand the sensory, perceptual motor challenges they face constantly. As a few of the contributing authors with autism stated:
Although it may seem that we are uninterested in our surroundings, that is not entirely true. In my case, I might be fixated on an object in my hand, but I am very much aware of what is going on outside my world. I listen very closely to conversations going on around me and despite looking in another direction, I see the actions of the people in the room, I may not look at you when you talk but I am always listening and I always understand. (Rubin, p. 96)
It [mental retardation] is the most disgraceful label which the term Autism is associated with. Yes, some areas remain less developed because of lack of associating the mind with body and environment. That does not prove that the mind is incapable of thinking. I had been labeled as mentally retarded when I had my first encounter with the psychologist. I was three years old then. The proof for my retardation was that I could not follow basic commands. I was not able to apply my knowledge although I could understand perfectly well what as being asked. (Mukhopadhyay, p. 136)
It may be that the social deficits, which are considered the cornerstone of an autism spectrum diagnosis, tell us far more about the person who made them markers for such a diagnosis than about the child whom he observes … As long as we are told that communication and social factors are the markers for autism, there will be an uneven response in tackling the discomfort and disorientation which may predate these peculiarities. (Blackman, p. 49)
The book highlights a theoretical perspective and methodology very different from the dominant literature. It is influenced by a critical disability perspective and Biklen's “presuming competence” orientation that views individuals with autism as capable of providing insights about their lives and relationships. In the final chapter, Biklen does an excellent job summarizing and interpreting the major themes that emerged from the contributed chapters. He puts considerable emphasis on the connection between the mind and body and how the physical difficulties described by the authors with the autism label affect performance. Here, I would have liked to see a greater connection to the professional literature or at least the material presented in the introduction. Conspicuous in its absence is the work of Leary and Hill (1996), who documented hundreds of references to movement differences and disorders in the autism literature. I realize that Biklen may not wish to contribute to the medicalization (Linton, 1998) of disability. However, including that seminal work could provide a conceptual framework in addition to the more sociopolitical notion of “presumed competence.” Moreover, understanding the challenges of individuals with autism through the movement disorder (or similar) lenses makes the connection to other literature outside of developmental disabilities where there is abundant information about unique human experiences of individuals labeled as having Parkinson's syndrome (e.g., McGoon, 1990), Tourette's (Sacks, 1989), and traumatic brain injury (Luria, 1932/ 1976; 1979). In at least one study (Strandt-Conroy, 1999), investigators found that the participants were most grateful for a way to understand their experience and for the opportunity to speak with someone who had some knowledge of movement differences. In particular, this linkage to movement differences could present a framework for understanding the accommodations, which the authors in Biklen's book report as aiding in their success. The work of Luria (1932/1976, 1979) Sacks (1989, 1990), Groden and Cautela (e.g., Groden, Cautela, LeVasseur, Groden, & Bausman, 1991), for example, would have been particularly helpful for readers who are unfamiliar with these authors.
With this caveat, I must return to my original premise. It took more than half a century to bring the experience of individuals with autism to the foreground. It is about time. It is also my fervent hope that work such as Biklen's will become a trend, and that the insiders' view of autism will become an essential part of the dominant perspective. This will go far to inform our basic and applied research into the causes and potential treatments for autism as well as our supports and service development. After watching this field for so long, I do not feel particularly optimistic; the autism industry apparently sees little reason to want to change. Nonetheless, the words of these individuals as presented by Doug Biklen in Autism and the Myth of the Person Alone are so insightful and enlightening that perhaps they will cause a sea change equivalent to the shift away from the psychoanalytic perspective of that occurred in the 1960s and 1970s. That movement was lead by parents (e.g., Rimland, 1964). Maybe this time individuals with the autism label can lead the way.