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Autism has reached epidemic proportions. The latest studies suggest that as many as one in 150 children ages ten and younger may be affected by autism-a total of 300,000 children in the United States alone. Adults included, there are more than a million people in the United States suffering from autistic disorders. Since autism has had a bleak prognosis, and since the isolation of autistic children is so painful to parents, Karen Zelan's accounts of her breakthroughs with autistic children in Between Their World and Ours present a particularly hopeful perspective. Zelan illustrates how diagnostic labels reflect the preconceptions and prejudices of the diagnostician, but reveal nothing about the unique person who carries the label and his potential as a human being.
Describing nine of the forty-five autists with whom she has worked, Zelan documents how psychotherapy with autistic youth helps them to overcome their problems in communicating, playing, feeling, thinking, and interacting with people more companionably. Her riveting narratives, showing her growing understanding of her young patients, capture how it is to be autistic. She describes the ways these young people meet the challenges of being the way the are. Her work demonstrates how the social context in which autistic children find themselves can make a significant difference in their development, their self-esteem, and their ability to think through problems in living.
Zelan, a gifted and intuitive psychotherapist, shows how the autist's sense of self emerges during childhood. She details how these autistic children's first friendships originate, the pitfalls and pleasures they experience in relating to their peers, their dreams, and their fears of social contact. These real-life stories reveal what worked with autistic children and why. Zelan offers prescriptive suggestions for parents and teachers based on her discoveries, demonstrating humane ways of dealing with the often troubling problems of autism and of closing the gap between their world and ours.
|Publisher:||St. Martin's Press|
|Edition description:||First Edition|
|Product dimensions:||6.00(w) x 9.00(h) x 1.00(d)|
About the Author
Karen Zelan was trained in psychoanalytic milieu therapy at the University of Chicago's Orthogenic School. She served as a senior staff supervising psychologist at Boston Children's Hospital Medical Center and as a Harvard Medical School instructor in the department of psychiatry. She has written extensively on children's learning and is the coauthor, with Bruno Bettelheim, of On Learning to Read. She is a psychotherapist to troubled youth in Berkeley, California, where she resides with her husband. Her son and daughter, now grown, live nearby.
Read an Excerpt
The Diagnosis Is Not the Person
I love my family, truly, dearly, and profoundly, but from a distance ... A hyper-sensitive organism like mine can find human contacts unendurable and deeply wounding, even if the heart remains tender. — HENRI MATISSE
Afflictions with unknown causes and cures educe in us a diverse array of feeling. Autism, the uncanny tendency to turn one's focus inward and away from others, resists and frustrates our most well-intentioned, tender, and prodigious efforts to help. Parents of affected individuals and professionals alike are glutted by lengthy, authoritative statements on what autism is all about, what causes it, and what its likely course will be. According to developmental psychologist Bryna Siegel, it is a "developmental disorder" that impacts the ways a child views the world. Autism's principal quality, one that prevails across the entire spectrum and the most upsetting to parents and teachers, is an indifference to or rejection of social contact. The autistic attitude seems almost "inhuman." Though it is true that the condition influences how a child perceives the world and learns about it, I emphasize how autism implicates social learning and colors the youngster's view of the social world in particular.
The list of autistic behaviors is a mile long: difficulties conversing; an evasion of human company; an inability to play freely; sensory sensitivities, especially to human stimuli; a need for situations to remain the same; such repetitive, self-stimulating behavior as chintapping, hand-flapping, or rocking; glassy-eyed staring and an avoidance of eye contact; a refusal, sometimes studied, to use the personal pronoun "I" or the word "yes." All this and more mystifies or appalls us. Self-injurious acts, such as biting, head-banging, or animallike sniffing and attacking, are particularly hard to bear.
For this condition all sorts of nostrums have been ventured. Autistic children have been subjected to procedures intended to "bond" them with their parents. Some therapists have recommended that parents forcefully hold their wild or withdrawn children in order to convince them of the social benefits of being physically close. Young autists may be the subjects of structured behavioral regimes that ignore how autistic people feel. Medical aids may be recommended, including vitamin supplements, psychotropic medication, or auditory training. Psychologists may interview autists to show that they lack a "theory of mind" (ToM) — that is, they have little or no awareness of their own mentality or anyone else's. Having a theory of mind means, simply, that you know you have a thinking mind and that others do, too. It means you know that minds function similarly even though people may arrive at different conclusions. Lacking this sense means that you're "mind-blind." Researchers agree that the child displays a sense of mindedness around four to five years. The development of a theory of mind permits the child to engage in deceiving, storytelling, tricking, joking, analogizing, and symbolizing. In order to engage in these activities, the child must understand that other people are capable of recognizing his or her intent. Theory of mind activities are social activities par excellence.
Touting this or that theory of autism and treatment method, investigators often neglect to take seriously an important body of evidence, much of it from autistic individuals themselves, that cries out for a fundamentally different approach. Save the telling accounts of the autistic experience by autistic persons and by their parents, a deplorable sameness pervades what we are told: they are not like us. How ironic that we meet the autist's desire that situations remain the same with a misguided consistency of our own! However vexing the condition, autism calls for a humanistic approach, one that returns us to the whole child, notwithstanding his often withdrawn or wild behavior. He has reasons for his actions and many a purpose behind them.
When he found himself in unbearable family circumstances, Henri Matisse, who was obedient and passive as a child until his mother gave him a box of crayons, called attention to his hypersensitivity in the company of others and described human contact as distressing, even though his feelings remained affectionate. The "box of colours ... was a tremendous attraction, a sort of Paradise Found in which I was completely free, alone, at peace." Many young autists would understand this implicitly; quite often they experience an inner tenderness despite wishing to be alone with their pursuits and at peace.
What if we framed our views of the autistic dilemma in a radically different way? What if we perceived young autists as capable of shaping their lives in significant ways? What if we believed parents capable of helping them in this endeavor? What if we humanely presumed a commonality among us and them? By what moral or psychological tenets do we gloss over their agonizing struggles to relate to us?
A Recent Encounter
In my work as a psychologist to distressed young people, I've learned to take with a grain of salt what is reputed to be true of them. I like to visit their schools and even their homes to observe firsthand what is going on. On one such occasion, I am sitting cross-legged with some nursery-school children, listening to a child I work with talk to his teacher about the highlight of the day. The children will be creating a collage by dipping their hands in brightly colored paints and pressing them on a sheet.
Suddenly all eyes turn toward the door as a latecomer, a fragile-looking but pretty, slender girl, is quickly ushered by her mother into the art room, away from the other children. For her part, the girl is propelling herself as quickly as she can into the very room, as it will turn out, in which she'll excel. But what could be so wrong that the children's chatter must come to such an abrupt halt?
A while later I feel a quick tug on my shirtsleeve. I'm being pulled in the direction of the art room by the girl who came late. Staring intently in the general direction of my arm, she says urgently to the air, "No painting ... no painting." I realize that I'm face-to-face with an autistic child.
"We think she's autistic," confirms her teacher. "She wears us out saying everything in opposites. If she wants to do something, like paint, she tells us she doesn't want to do it." (Why is the little girl stressing the "pain" in the word "painting," I wonder. It sounds like she's saying, "No pain ... ting." Could she have been pained by being told "no" to painting so many times? Or maybe she knew she was a "pain" for asking to paint so many times.) Now her teacher exclaims, "She's driving me crazy!" And to the art teacher, "Isn't there room for her to paint yet?"
Later I peek into the art room, where I witness the little girl gazing blissfully at her fingernails as she carefully brushes them, one by one, with a deep cherry red. Remarkably her autism does not divert her from her artistic purpose. It's as obvious as any other child's as she paints her fingernails red. It shows determination, perhaps giftedness, does it not? Her contentment is unmistakable as she amuses herself tinting her nails, engrossed and attentive, revealing commendable finemotor control. Doesn't it make a static diagnosis like "autism" unnecessarily binding? If another, undiagnosed child had concentrated so thoroughly, had created such beautifully colored fingernails, we might say, "How wonderful!" or ask, "Is she imitating the big girls painting her nails like that?"
"She does this kind of thing very well," says her teacher, noticing I am watching the little artist at work.
This episode stayed with me for weeks. It was the tug on my shirtsleeve from a seemingly spaced-out kid that did it. It got me thinking about my experience with autistic children decades before. I recalled how, while training to work with troubled youth, I'd been taken by the idea that our attempts to get to know a person in distress ought to be infused with the same kind of simpático respect we pay to and expect from our closest, most trusted companions. I learned it wasn't disengaged professional distance, free from the muddying effects of human emotion, that helped my autistic charges. It was rather an attentive, gentle, caring approach that worked best. It wasn't "scientistic" diagnosis and preconceived notions of autistic infirmity that had helped them go beyond autism. Instead it was an open-minded attitude, a wondering whether young autists behave as they do for sound reasons, that got me beyond their autistic indifference.
And the little girl had chosen me, of all people, to advocate for her turn to paint. I felt a surge of elation, flattered to have been the one, much as I had felt overjoyed when years before my autistic protegees deigned to recognize my existence. True, our young autist seemed to use my arm as an instrument to get into the art room. If I hadn't known better, I might have felt dehumanized when she talked to the air while staring slightly off to the side of me or when later she looked right through me. I might have become steadfastly disinclined to attribute any reason at all to her odd behavior because she had the temerity to treat me the same way she would an object.
Knowing full well, though, the obstacles an autistic individual must surmount to reach out to another person, I could hardly contain my excitement at this unexpected opportunity to observe and reflect upon the autistic phenomenon once more. How I longed to take the little girl's hand and walk with her to the art room, countering, perhaps whispering, "Yes! Painting!" Who knew what this unusual child would do if I tried to interact with her in a different way? But, alas, I was only a visitor.
Parents and Children
Bruno Bettelheim, with whom I trained to be a psychotherapist at the University of Chicago's Orthogenic School, a residential treatment milieu for young people, thought troubled youth became so because they had always lived out an "extreme situation." Their acute anxieties and violence suggested to him that something in their experience drove them to excess. If life experiences had caused or aggravated a set of human behaviors, surely, for these youth, a healthier setting must be the cure.
When he wrote of the Orthogenic School students, "they all shared one thing in common: an unrelenting fear for their lives," Bettelheim generalized the thought to autistic youth. He continued, "the severity of their disturbances is directly related to how early in life these conditions arose, for how long they obtained, and how severe was their impact on the child."
Because troubled youth, including young autists, may act as though they fear for their lives, Bettelheim deduced that something or someone caused them to feel that way, that their parents had behaved toward them in such a way as to cause them to be dysfunctional and unhappy. I think, rather, that autistic kids do not so much fear for their lives as they fear being autistic. They are often aware of their diagnosis and its implications for their future. Once self-aware — many autists I've known were cognizant — they fear for themselves and their ability to cope in a complex world.
As for their parents, it's not that they wish their children did not exist. It's rather that, for some, they wish their children were not autistic. This gets translated in the young autist's mind thus: my parents wish I were different, and so do I.
Yet what parent wouldn't become discouraged, distraught, impatient, withdrawing, or rejecting when faced, day in and day out, with an infant or young child who is unceasingly isolated and disdainful of human company? The young autist may then react to an understandable array of parental emotion as though it is yet one more burden to bear. But we must remember that taking the effect for the cause serves no one. The child's autism does precede the parent's reaction.
This book is about young autists who, at significant moments in their lives, are not merely diffident, solitary, and menacing, particularly when the world becomes too much for their vulnerable souls; it's also about how they can be keenly susceptible, unexpectedly attuned to the intent and feeling of others, desirous sometimes of expressing their feelings and searching for human company. You will become acquainted with some of these children — nine autists of the forty-five with whom I've worked over the years — in the pages that follow, depicting their dilemmas and interpreting their triumphs.
Diagnosing these young people does not do justice to their individual personalities. Nor do diagnostic labels usually include our personal responses to them. Every autist I knew forged a distinctive relationship with me, and as I became acquainted with each one, I almost forgot their ominous diagnoses and prognoses, often concentrating, as I would with any child, on each youngster's special, sometimes lovable qualities. They became whole people to me, living their lives as best they could within a meaningful, rewarding, prospective human connectedness. The narratives in this book illustrate a psychotherapeutic approach aimed not only at luring young autists out of their often impenetrable isolation but also at convincing them that they are worthy of the people world.
Many experts deem psychotherapy inappropriate for autistic kids. This is doubtless due to earlier, failed psychoanalytic or other psychotherapeutic attempts to reach these children. Or it may stem from the fact that there is no single therapeutic procedure that always works for them, nor a single unifying theory that explains their mystifying behavior. Yet this is hardly surprising: there is no single efficacious method to reach ordinary kids nor a universal theory that explains their troubles living in an unpredictable world.
Except for those written by their parents or by the autists themselves, many recent books on young autists tend to omit the complexity of feeling we may have about them and they about us. If we are to improve our efforts to help them, we must introduce ourselves to them with the most genuine commitment we can muster. The varied and highly personal perspectives that pervade their being reveal not just what ails them but also ways of approaching them. Communing with young autists, as I intend to show, helps ameliorate their most bizarre and antisocial behaviors and restores to them and to us the possibility of a warm friendship that, in turn, engenders the hope that the future is not as bleak as it once appeared.
Diagnosis and Experience
Diagnosis has become increasingly divorced from experience. This appalling state of affairs is particularly bothersome when it comes to assessing and planning for young autists. The trials and hard-won victories I have experienced living and working with these young people hardly prepared me for today's revised appraisal of autism — that young autists lack a theory of mind, that they experience only the simplest emotions. I believe this skewed evaluation of a significant human minority arises partly from a misuse of diagnosis. I say "skewed" because many experts who write about autism have never lived with or tried to help young autists, nor do they expect any real or long-lasting benefits from thoughtful efforts to do so. Autists have neither the wherewithal nor the interest to correct a misapprehension of their strengths and weaknesses. Rather than engage with us in any way — like a discussion of what's wrong with our view of them — they'd rather be left alone with their private reveries. What could be an interesting experience of the autistic youngster is not likely to emerge unless we reexamine and rethink our purposes in evaluating other people.
Diagnosis, whereby a physician identifies a patient's disease by its symptoms, originally consisted of the doctor's experience of the patient, mediated by his bedside manner. Even today a pediatrician presiding over a child's well-check acknowledges that the youngest of patients is likely to have his own agenda. To ignore it would conclude the interview, because the youngster would refuse to cooperate. Considering his needs and wants yields interesting information and permits the physical exam to continue.
Excerpted from "Between Their World and Ours"
Copyright © 2003 Karen Zelan.
Excerpted by permission of St. Martin's Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
|Note to the Reader||ix|
|Chapter 1||The Diagnosis Is Not the Person||1|
|Chapter 2||Gregory's Journey||33|
|Chapter 3||A Meeting of Minds||55|
|Chapter 4||I Can See Me in Your Eyes||93|
|Chapter 5||From Solitude to Sociability||126|
|Chapter 6||Theory of Mind Problems||152|
|Chapter 8||Risking Friendships||223|
|Chapter 9||School Days||268|
|Chapter 10||What to Do||311|
|Chapter 11||Hopes for Autistic Children||357|