Autism: From Research to Individualized Practice Demystifying the Autistic Experience: A Humanistic Introduction for Parents, Caregivers, and Educators
These two books respond in contrasting ways to the increasing incidence of reported autism spectrum disorders, now thought to be at least one in 500. The first book is directed to professionals, and the brief foreword by Gary Mesibov, director of North Carolina's Division TEACCH (Treatment and Education of Autistic and related Communication handicapped CHildren), makes clear its goal: "to close the 'research to practice gap' in the active pursuit of 'a dynamic collaboration.'" The readership of the second book stretches to include anyone who is concerned with autism, given that both practitioners and parents are caregivers and are likely to be educators as well.
Perhaps the most significant advance of the past 30 years has been the displacement of psychoanalytic by educative approaches, with the recognition that education itself is the most effective therapy and that daily caregivers should be welcomed, even trained, as part of the therapeutic team. Before 1970 it would have been inconceivable that a book addressed to professionals would have included a chapter called "What Families Wish Service Providers Knew," coauthored by a parent, or that a mother with an autistic daughter would have been asked by a psychiatrist to write this review.
A wide range of providers contributes to Autism: From Research to Individualized Practice—psychologists, language therapists, occupational therapists, teachers, and a pediatrician (the only M.D.). The author of Demystifying the Autistic Experience: A Humanistic Introduction for Parents, Caregivers, and Educators has no specialized training, but his expertise carries its own authority. Living with the kind of very-high-functioning autism now known as Asperger syndrome, he knows autism from the inside. His book is designed for quick, easy (but not superficial) reading, with a wealth of anecdotal material supplemented by summaries that open and close each chapter.
The 11 chapters of Autism: From Research to Individualized Practice are arranged under three headings: "Diagnosis and Assessment," "Child-Centered Interventions," and "Family and Community Interventions," each focusing on practice rather than theory, each with an impressive bibliography. The opening chapter, "Bridging the Process Between Diagnosis and Treatment," sets the tone; it is written "to assist professionals in navigating through the diagnostic process and the maze of treatment options for children with autism and their families." A later chapter surveys behavioral, cognitive, and developmental therapies, noting that despite some of the encouraging outcome studies, "no one behavior program has proved superior to another for all children with autism." Several authors caution parents against interventions that promise cure. In most, if not all, cases, autism is for life.
Because autism is profoundly a disorder of communication, the long and thorough chapter called "Making Communication Meaningful" is particularly useful, both for its recognition of the communicative functions of nonverbal behaviors and for its very specific "road map" to the development of symbolic language. There is a chapter called "Best Practices" for teachers, who may be encountering for the first time the special characteristics of children who have autism, and a chapter on sibling support groups. Lee Marcus of TEACCH distills years of experience in programming social experiences for adults with autism in a how-to chapter that addresses the social challenges that do not go away. It is, regrettably, the only chapter that addresses the fact that children with autism do not remain children forever.
Demystifying the Autistic Experience focuses on adults, whether they be high-functioning like the book's author (who is now a consultant on autism) or in need of continual care. The book will be particularly useful in the training of caretakers, who, although they may not be able to handle phrases such as "positive contingency affect modulation," may yet be intuitive and effective members of the therapeutic team.
Although William Stillman's autism is self-diagnosed, his description of his "differences"—a word he prefers to "disabilities"—would clinch the diagnosis for most experts. His experience of autism is wide as well as deep, ranging from experience with people like himself, whose challenges are invisible (though very real), to those who are totally nonverbal, whose caretakers must learn to recognize the communicative functions of their bewildering behaviors. The anecdotal nature of Stillman's book is essential to the book's usefulness. Who but someone who had "been there" would be able to point out the value of what Stillman calls "movie talk"? High-functioning, verbal individuals with autism may find it "useful to have a 'scripted' sense of what to say in advance of…social situations," often memorizing whole dialogues for later use, although not everyone would agree that they always "repeat them in socially appropriate ways." He advises, "This is someone who is working hard to fit in by doing what is expected…. Validate and encourage the communication by responding to it."
The book is full of practical advice. For example, supply a phrase that the autistic person can use to escape the built-up stress of a social situation: "I need a break," or "Please excuse me." And in a first meeting, consider how much you know about the autistic person, whereas he or she knows nothing about you. So "make yourself real." Provide, in advance of your meeting, a photo of yourself. Write down your name, birth date, favorite colors, favorite activities, family members, and pets. You don't want to join "the long parade of two-dimensional cut-outs that have drifted in and out of that person's life without consequence or connection."
Nevertheless, it's well to note what Stillman doesn't mention: people with autism, however talkative they may be, have to be helped toward two-way communication, since their "theory of mind" difficulties—difficulties in assuming the perspectives of others—limit their ability to develop truly reciprocal relationships.
In a chapter called "Mental Health," Stillman emphasizes that a diagnosis of autism should not preclude the recognition of additional, treatable conditions, such as anxiety, depression, or obsessive-compulsive disorder. He closes his short book with "Instructions for Teams Supporting Individuals With Autism."
This view from inside will lend reality to the general surveys in Autism: From Research to Individualized Practice. Read the two together.
Ms. Park is senior lecturer emerita in English at Williams College in Williamstown, Massachusetts, and the author of The Siege: The First Eight Years of an Autistic Child.
