Press: Jessica Kingsley Publishers; 2 edition (February 15, 2001)
Author Name:Sperry, Virginia Walker
This book presents ten longitudinal case studies of individuals with autism and discusses the nature of childhood autism and teaching children with autism.
The studies involve students of the Elizabeth Ives School for Special Children, which Virginia Sperry directed from 1966 to 1972, who were tested at the Yale Child Study Center in childhood; seven of them were tested again in adulthood.
The book provides the test results and detailed information about the subjects' lives over the approximately 25-year period, the quality of their lives at the end of the study, what kinds of jobs they held if they work, and what kind of social interactions they had, if any.
In the studies, the children's parents discuss their experiences raising a child with autism and caring for an adult with autism.
The second edition adds a new case study and follow-ups for all but one of the original study participants to show how their lives are now.
About the Author
Virginia Sperry was Director of the Ives School from 1966 to 1972.
Before then, she was affiliated with the Department of Speech Pathology and Audiology at Northern Arizona State University and she taught in both public and private schools.
Excerpt. © Reprinted by permission. All rights reserved.
Excerpted from Fragile Success: Ten Autistic Children, Childhood to Adulthood, Second Edition, by Virginia Walker Sperry, M.A.Copyright © 2001 by Paul H.
Brookes Publishing Co.
All rights reserved.
In the 1960s, autism was a mysterious condition.
It was poorly understood by physicians, and there was little concrete information available on its symptoms and treatment.
From 1966 to 1972, the years that I was director of the Elizabeth Ives School for Special Children in New Haven, Connecticut, I often saw the painful frustration on the faces of the parents of the pupils at the school as they endured the confusion and emotional turmoil that went with raising a child with autism.Soon after my retirement in 1972, I ran into an 11-year-old former Ives pupil and his mother in the aisle of a local supermarket.
I had last seen the child when he was 7 or 8 years old.
Sandy-haired, freckle-faced, and rangy in build, he beamed as he recognized me.
Compared to the hyperactive, constantly chattering boy I had known, he seemed focused and in control.
His mother told me proudly that her son was managing well in the special education program of his public school system.
The change in him was really remarkable.
She thanked me for the attention he had received at Ives, without which, she felt, he never would have come so far.
In a flash of conviction and inspiration, it occurred to me that it could be beneficial to share with others, especially the parents of such children, some of the hard-won knowledge we at Ives had gained from working with children with autism.Within a year, I began to collect data on the careers of 11 former pupils of Ives School.
These children were chosen not because of their diagnosis but because I had a sound relationship with them and their parents.
Geography defined the choices considerably, so they all lived within a manageable distance.
Of these 11, I have included 9 stories of those whose original diagnosis was "autistic," "autistic-like," or "personality disorder with autistic overlay." Also, for this edition of the book I have added a tenth case in order to provide insights into another type of disorder falling in the autism spectrum, pervasive developmental disorder-not otherwise specified (PDD-NOS).The parents gave me permission to obtain information from the various institutions and programs that had treated their children.
The Yale Child Study Center in New Haven, Connecticut, which originally tested and diagnosed the 10 children profiled in this book, provided facts on their early toddlerhood, doctors' and social workers' analyses, accounts, interviews, test scores, and final diagnoses.
(Doctors at the Center's Child Development Unit, specifically the late Dr.
Sally Provence, Dr.
Martha Leonard, and the late Dr.
Mary McGarry, referred their most puzzling younger children to the Ives School from the school's inception.
These three doctors also became consultants for the school.) Other information came from records at nursery schools, public school special education programs, state-funded programs, and private special education schools.I compiled a full set of testing results for each child, from their earliest examinations through grade-level achievements and scores when each of the original nine turned 21 and "graduated" from high school.
To help complete the profiles, seven of these children were retested as adults at the Yale Child Study Center.I interviewed the children's teachers, social workers, and parents, and as the children got older I went to their graduations, workshops, group homes, and places of work.
I took many of them out to lunch several times and kept interviewing them and their parents through 1999.
At the time my research for the first edition was complete, the individuals' ages ranged from 23 to 30, and for the second edition, from 30 to 40.
My original goal of discovering how these children would develop as adults has been accomplished.
Nevertheless, I still keep in touch with all of them.The 10 accounts in the following pages are the product of this work.
It is now several decades since most of these children, now adults, attended Ives, and the study and treatment of autism has broadened and developed.
Indeed, the opportunities open to individuals with autism — the programs for special children and the availability of special schools — are largely taken for granted.
Readers may look on the description of these early years as a history of those who were among the first children to receive services designed specifically for individuals with autism.
But the challenges faced by these children are not "history." Although many have learned, to some extent, how to cope with their disability, their needs and characteristics have not changed.
Nor has the problem of diagnosis been solved: There are still many children all over this country and throughout the world whose behavior, whether diagnosed as autistic or atypical or even undiagnosed, confounds and disturbs their parents, doctors, and teachers.
Such children present challenges to those who care for them that mirror the experiences of the people whose lives are recounted in these pages.As the research grew, I questioned who would be the principal audience for this book.
There were the pediatricians, who, in the early years of Ives, seemed largely unaware of childhood autism, now termed autism spectrum disorder.
Then, there were the parents — fumbling, often despairing, and totally bewildered.
They were constantly asking for guidance and reassurance or at least some predictions as to the future.
Other medical specialists and social workers, too, were baffled by these children whose behavior can, on the surface, seem so strange.
I wanted to address all three of these groups.
During the 1960s and 1970s, we teachers of youngsters with autism were in a no-man's-land, where information, resources, and guidance were largely unavailable and where intuition and innovation were required daily tools of the trade.
I wanted my book to record in an accessible manner what we learned, so others — whether doctors, teachers, or parents — could benefit from it.
I also hoped to broaden the understanding of autism for various audiences, including employers and those in the community who deal with people with autism on a day-to-day basis.
It is the kind of book I wish I had had when I taught at Ives School.This book focuses on the stories of the adults themselves as they are shown maturing from infancy to adulthood in the year 2000 and their parents' accounts of raising a child with a developmental disability, including the effect this had on their own lives and the lives of their other children.
The following chapters show who the very different children with autism are as adults — where they live, what work they do, what impairments have been moderated, and what disabilities remain unchanged.
These individuals are dramatic examples of the wide range of autistic behaviors, and their stories demonstrate the kind of parental interventions and the medical, educational, vocational, and recreational services that played an important part in their growing up.There is a secondary theme and hypothesis to this book as well: Early, concentrated intervention has led these 10 children to achieve comparative success in adulthood.
Early diagnosis and medical and educational intervention were a tremendous benefit to each child.
Without the unceasing dedication of parents, doctors, teachers, and other professionals, many, as adults, would be languishing at home or even in an institution.
Like any other youngster, all of these people have talents that might well have been lost, totally blocked by their various disabilities.
The effectiveness of our work at the Ives School was due largely to our firm belief that each child has his or her strengths and that, as with typically developing children, only by the discovery and use of their own individual talents can they really become strong and secure.
Constant supportive guidance has helped all of the children in this book to use their talents and accomplish limited or, in a few cases, total independence.
For more or specialized information on a particular facet of autism, readers may turn to a list of resources at the end of this book.To help the lay reader with the specialized terminology of psychology and special education, I have included a glossary, which appears at the end of this book after the appendices.
In some of the older material, especially in quotes from researchers and studies before more person-centered terminology came into common usage, the children may be referred to as "handicapped," "autistic children" or "autistics." Of course, by this we mean children with disabilities or children with autism.
To obscure the identities of the children (and families) discussed, names and birth dates have been changed; and permission has also been obtained for all material herein.
The children, mothers, fathers, and siblings here stand as archetypes of those with developmental disabilities and their families across the country.
The problems and solutions touched upon are universal.
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