OAARSN Book Review
Success: Ten Autistic Children, Childhood to Adulthood
ISBN 1-55766-458-7 paperback.
Professional and public interest in autism spectrum disorders often begins and ends with early childhood and diagnosis. But children with autism grow up into teenagers and adults. They are assumed to have normal life expectancy and thus will live into their seventies or eighties. Longitudinal studies of outcomes, or how children with autism develop as adults, are very rare. That is the special value of Fragile Success, which was published in a first edition in 1995. A significant amount of material has been added for this second edition.
Virginia Walker Sperry directed the Elizabeth Ives Special School for Children in New Haven, Connecticut from 1966 to her retirement in 1972. Now 85, she is Research Affiliate at the Child Study Center, Yale University School of Medicine. From the mid-1970s, she began to collect data on 11 former pupils of the Ives School who had "autism" somewhere in their diagnosis. Nine are profiled in the book, and a tenth adult who had a diagnosis of PDD-NOS (pervasive developmental disorders not otherwise specified) was added for the second edition. In 1999, when research for this edition was complete, the individuals’ ages ranged from 30 to 40.
The case studies that make up most of the book are preceded by two chapters. "Childhood Autism and Related Disorders" is an outline of successive explanations of autism from the 1950s. "The World of the Ives School" surveys the background of need that led to the school’s founding, describes the "perplexed and perplexing" children who were admitted between the ages of 3 and 7, and explains the teaching methods. Special efforts were made to address the children’s social, language, emotional and perceptual needs. The teachers used both intuition and consistency.
The nine individuals profiled in Fragile Success were all described, when children, as "out of touch", "impervious", "unaware of the environment", or "with inappropriate reactions to the environment." In some degree they illustrated all the traits that define autism spectrum disorders—the concreteness of thought; inability to reason logically; speech patterns that were articulate but odd, or limited and echolalic, or totally lacking. All showed movement differences, the need for sameness and structure, and acute anxiety.
We are introduced to each of the three women and seven men through a narrative description by the author, results of developmental test scores in October 1987 (in seven cases), and a parent’s perspective (in six cases).
Fragile Success is valuable for incorporating parents’ views in most cases. While unique in details, the parent and family experiences share many features. In the first edition these were mainly "the search for answers and understanding; the feelings of despair and hope; the pain, anger, sadness and frustration." By 1999, much of the parents’ bitterness and frustration had been "replaced by a growing sense of pride and acceptance of their children’s accomplishments."
The complex variety of presenting symptoms, life circumstances, efforts and outcomes is summarized in appendix tables for eight individuals. There are comparable data for original diagnosis, reasons for referral to the Ives School, strengths, weaknesses and education to age 21; and for current living situation, current occupation, current income sources and degree of mental retardation as an adult. Only one of the eight adults depends only on paid employment; he is also married with two children. Three others are now said to have "mild mental retardation", three to be "moderately retarded", and one to have "severe retardation" though he now understands speech and talks in brief sentences.
The book is written "from the outside"--the points of view mainly of professionals, but also of parents to some extent. But one "inside-out" account is presented in an appendix--"Growing In and Out of An Autistic Mind" by Bill who "battled his way out of autism." Another appendix comments on the portrayal of adult autism in the film "Rain Man."
How representative are these case studies of all adults with autism who are now in their thirties? The adults profiled in Fragile Success have probably done better than most. As children, they did get expert and dedicated help, as well as generally appropriate services as they grew up into adulthood. Their parents fought for them when they were children and are still very important in their lives. How important are these factors? Would each person have evolved to reach much the same functioning state, with "natural maturation"? I was interested to see whether any of the adults had been helped by newer insights, interventions and therapies of the past decade, such as food intolerance and dietary intervention, sensory integration dysfunction, movement disorders, sleep hygiene or facilitated communicating. But apparently not. Five of the nine adults still living take medication to manage anxiety and help concentration; four take no drugs.
In summing up the case studies in the first edition of Fragile Success, the author described the lives of her subjects as "bittersweet" with both encouraging and discouraging features. In her conclusion to the second edition, she is able to remark that in the 6 years since the first edition, all have made "great... almost unbelievable progress" in "inner growth" and "steps toward independence."