The Science and Fiction of Autism

The dramatic and baffling upsurge in rates of autism diagnoses has spawned a brisk literary trade. If the incidence of autism has increased more than tenfold in the past decade (the statistics-like everything in the world of autism-are hotly debated), a flood of new books on the subject has more than kept pace. These books represent nearly as many genres as there are theories about autism’s causes and treatments: some seek to expand the boundaries of our understanding with reports of exciting new therapies or narratives of dramatic recoveries, while others offer closely observed dispatches from the autism front, highlighting smaller miracles wrought of constant vigilance and hope. There is also a rapidly expanding literature produced by persons with autism, contradicting longstanding beliefs that such individuals are always impaired in their ability to communicate meaningfully.

Laura Schreibman’s The Science and Fiction of Autism falls into still another category we might term the literature of “containment.” Schreibman, distinguished professor of psychology and director of the Autism Research Program at the University of California at San Diego, is a veteran of the autism wars whose career began in the days when parents were still routinely blamed for their children’s condition and researchers who pointed to autism’s now-obvious neurological roots were shunned by the high priests of medicine and psychiatry. Schreibman has seen too many unsubstantiated claims of miracle treatments for autism to offer more than a rather somber account of the field from the perspective of her clinical experience and scientific research. She understands why the bad science of the past makes parents and advocates less than willing to wholeheartedly embrace the better science of the present, but she insists that progress in understanding can only grow out of mutual trust and collaboration. Schreibman promises to separate the “science” of autism from bogus claims that yield false hopes. “Autism is a lightning rod for the best and the worst,” she writes, “because the emotional issues are profound, because the science is hard, and because so many mistakes have been made in the past.”

Leo Kanner, the Johns Hopkins psychiatrist who first labeled the condition in 1943, was not mistaken, Schreibman argues, in establishing the diagnostic criteria for autism, which “remain basically unchanged. Most of the debate has focused not so much on the nature of the main symptoms but rather on the relative importance of the symptoms for the diagnosis.” In outlining these symptoms, Schreibman stresses their character as either deficits or abnormalities, from deficits in language, communication, and social behavior to abnormalities in response to the physical environment or in restricted, repetitive, and stereotyped patterns of behavior. Anyone who has spent much time with an autistic person would surely rank these among the condition’s most pervasive features. But the containment of autism within these negative categories promotes views that are no longer tenable, including Schreibman’s assertion that “approximately 75 percent of autistic children are mentally retarded.” This figure has been gradually revised downward since the publication of the 2001 study she cites, in large part because of the success of behavioral teaching methods Schreibman herself has long championed. This contention is a highly volatile issue in light of current research (conducted perhaps too recently for citation by Schreibman) by the Cambridge University neuroscientist Matthew Belmonte and others, who are finding that disordered interactions between an autistic person’s “normal” human mind and an abnormal sensory processing apparatus may account for his or her putative “retardation.”

The newly emerging paradigm is also evident in the self-reporting of many persons with autism, who in the past have tended to be dismissed as either too “high functioning” to be representative (beginning with Temple Grandin, world’s leading designer of livestock facilities and best-selling autistic author) or too “low functioning” to be capable of communication, despite their own claims to the contrary. Schreibman’s harsh dismissal of “facilitated communication”-a technique in which nonverbal autistic persons are purportedly taught to use a computer keyboard to express themselves with the help of a “facilitator”-is grounded in numerous studies showing that facilitators and not the autistic subject were doing the “communicating.” Yet an Academy Award-nominated 2004 documentary (Autism Is a World) depicts a “severely” autistic twenty-six-year-old woman painstakingly typing on a keyboard merely held by an assistant. Far from claiming to be miraculously “cured” of autism, Sue Rubin, the subject of the documentary, acknowledges the debilitating nature of her condition; she requires constant assistance of a quality and quantity rarely enjoyed by most autistic persons. Rubin apparently faces the same “motor praxis” challenges frequently observed in autistic persons, yet Schreibman claims “motor praxis problems have never been associated with autism.” What she really means is that these challenges have never been included in the official diagnostic categories, which reveals as much about the policy of containment as about autism.

Schreibman’s contention, then, that autism “science” and “fiction” may be neatly separated is somewhat misleading, as is her method. She devotes considerable space to debunking long-discredited theories, employing the present tense, for example, to describe psychoanalytic treatments devised by Bruno Bettelheim in the 1960s that were exposed years ago as a cruel hoax. She also largely ignores the interdisciplinary quality of much new autism research, which reflects how deeply this condition is grounded in relationships: between different sections of the human brain; between genetics and the environment; between autistic ritual and narrative meaning.

Schreibman does not pursue these new frontiers, but her book is helpful in treating the theory and practice of behavioral interventions: the educational treatment of choice for most autistic children because they build learning skills one painstaking step at a time. To her credit, Schreibman does acknowledge that claims of “scientific” validation for behavioral treatment rests on shakier ground than many ardent proponents generally admit. She concedes both the flaws of a celebrated 1987 UCLA study that fueled claims of “recovery” from autism through the methods of applied behavior analysis, and the failure of subsequent efforts to replicate the original results. As an academic researcher (though hardly a scientist), I would not care to invest my reputation in a single study showing that nine of nineteen autistic children were “indistinguishable” from other children after receiving highly intensive behavioral interventions. As the parent of an autistic child, on the other hand, I would (and have) quit my job and moved halfway across the United States in search of an educational placement for my son grounded in those very behavioral principles, not so he can become “indistinguishable” from other children, but so he can be taught in the way that he learns best.

Schreibman’s promising current research seeks to develop individualized behavioral therapies based on differences in children’s responses to treatment. “Research on developing individualized treatments is still in its infancy,” she writes, as autism research of all kinds is. As this work unfolds, the need to choose between “science” and “fiction” will not be the most pressing issue facing the autism community: most parents and teachers are fairly good at discerning what works best for children and adults in their care. The real challenge is forging a coordinated autism education and research campaign (the M.I.N.D. program at the University of California-Davis is justifiably cited by Schreibman as a good start, especially on the research side).

The autism crisis is a social-justice issue that will not go away; it crosses over into the realms of politics, religion, medicine, and above all education. There is an autism diaspora underway: many families uproot themselves in a desperate quest for services, knowing that the right educational setting can make the difference between a child consigned to banging his head on floors and one who learns to navigate a bewildering array of uncoordinated sensory inputs. There is a vast disparity in quality of services, with families in poorly funded urban and rural school districts denied the range of options that more affluent families fight so hard to secure for their children. Schreibman’s tone is surprisingly upbeat on this most vexing point: the struggle of public school districts to provide quality autism education programs based on teaching methods that clearly work. If you do not believe this is a critical and highly contentious public issue, just ask someone serving on your local school board.