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978-1572305441

autism

Preface Preface “It

Preface Preface “It all depends on the way you see things,” said the woman on the other side of the little table in my office. “Once you understand how they think and see the world, what can seem like a disability one day can be a talent, or a gift, on another.” The words struck me like a thunderbolt. The way you “see” things? That there were different ways of viewing disability—including, in some circumstances, as a gift—was something I had known on an intellectual level for a long time in my work with children with autism spectrum disorders (ASDs). But somehow I had never truly appreciated the concept until it was uttered by Marsha, the mother of Chris, a teenager with Asperger syndrome. What a difference it would make, I realized, to understand how kids with ASDs “see” the world and how that would change the way we “see” the kids. This turned out to be the key to what I had been looking for, the link to tie together the various strands I had been thinking about and trying to articulate in explaining the science of autism to parents of children with these perplexing disorders. It was hearing these words that helped me write this book. Marsha had spoken these words in response to a question I had asked: What had helped her cope with the stress of raising a child with ASD? How had she survived those years when Chris was having difficulty in school, when he was not quite living up to family and school “expectations,” when so many people, trying to be helpful, could not resist remarking that he was not quite “normal” (whatever that is)? The extra time Marsha had to spend with Chris was a real burden on the rest of the family. She elaborated that once she and her husband were able to vii

viii Preface understand him, what made him think and feel in a different way, life became ever so much easier. Now it seemed like living with an adolescent with ASD was no more difficult than living with any teenager (admittedly not an easy task at the best of times!). Marsha had learned to look into the inner world of her child’s mind, and that view and perspective had made a major difference to her, to her family, and, most important of all, to Chris himself. I have seen parents experience much confusion and anxiety upon hearing terms such as “impairments in reciprocal social interaction” and “stereotyped behaviors” when what they are trying to deal with is a child who ignores their requests to play or rocks himself repetitively or lines up little figures across the floor over and over again. I have seen how parents react when they realize their young child doesn’t cuddle with them or does not run to greet them when they’ve been out all day. It must seem impossible to understand this behavior; to have a child who appears capable of doing incredible jigsaw puzzles one day, of being able to program the most complicated video machine on another day, but who doesn’t speak at all, who does not communicate the simplest phrase. In this book, I have tried to explore these and other behaviors through stories that illustrate how understanding individual children can help parents enter the inner world of their children, can understand where these behaviors come from, and then can implement intervention and treatment strategies that make a true and lasting difference. It is important to focus on real experiences as a way of understanding, but communicating that experience can be a daunting and difficult task. The difficulty surely lies in the fact that children with ASD use a secret language to communicate; they see the world from a unique perspective and experience themselves and others differently. They live in a mysterious world of direct perception and immediacy; they see a world without metaphors. They are “a mind apart,” but at the same time they are still children for all that. This difference in perspectives is hard for parents and professionals to understand at first glance. It means traveling to a “foreign country” and learning a new language. The inescapable difficulties in communication often lead to stereotyping, misunderstanding, and stigma. Marsha experienced the hostility and rejection of uncles and aunts who could not tolerate Chris’s disruptive behavior at family gatherings, and she experienced the disapproving looks of complete strangers in the grocery store who watched him become upset because he could not have a specific brand of cereal. She could tell they

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    A Zachary Mind Apart Chapter 4 Zach

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    46 A MIND APART about Uncle Jim?”

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    48 A MIND APART presumably because

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    50 A MIND APART avoid it as much as

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    52 A MIND APART orized the dates of

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    54 A MIND APART ter, and grotesque

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    56 A MIND APART The relationship be

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    60 A MIND APART The main reason for

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    62 A MIND APART language or visual-

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    64 A MIND APART simply too varied t

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    66 A MIND APART For the most part,

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    68 A MIND APART eyes and so does no

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    70 A MIND APART the records of) as

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    72 A MIND APART grandmother’s hou

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    74 A MIND APART ture. She ran a suc

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    76 A MIND APART iorally based appro

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    78 A MIND APART and communication s

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    82 A MIND APART ples of impairments

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    84 A MIND APART years of age. Once

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    86 A MIND APART generalize that bey

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    88 A MIND APART problems. Metaphors

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    90 A MIND APART iety only increased

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    92 A MIND APART on my part, I under

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    94 A MIND APART about subways here

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    A Teddy Mind Apart Chapter 7 Teddy

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    98 A MIND APART Woodview Manor is m

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    100 A MIND APART Santa’s knee. We

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    102 A MIND APART of human relations

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    104 A MIND APART in the face of ove

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    106 A MIND APART ment but still dem

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    108 A MIND APART I managed to conta

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    110 A MIND APART When she first not

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    112 A MIND APART pairment and impro

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    A Sally, Mind Ann, Apart and Danny

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    116 A MIND APART parents or grandpa

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    118 A MIND APART this Website, thes

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    120 A MIND APART I ask Joan and Dav

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    122 A MIND APART ders). If there we

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    124 A MIND APART but it’s likely

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    126 A MIND APART the appearance of

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    128 A MIND APART disorder, a very p

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    130 A MIND APART to unravel these m

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    132 A MIND APART may continue to se

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    134 A MIND APART come to the appoin

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    136 A MIND APART gies. Yet she felt

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    138 A MIND APART more sensitive to

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    140 A MIND APART communication ther

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    142 A MIND APART Neither do we know

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    144 A MIND APART The therapist woul

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    146 A MIND APART would have to awai

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    A Ernest Mind Apart Chapter 10 Erne

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    150 A MIND APART him. But either he

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    152 A MIND APART set that she would

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    154 A MIND APART child with ASD, pa

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    156 A MIND APART stances, become ap

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    158 A MIND APART in class. That wou

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    A Frankie Mind Apart Chapter 11 Fra

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    162 A MIND APART and sailed straigh

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    164 A MIND APART because a child ha

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    166 A MIND APART moting more social

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    168 A MIND APART Harry was original

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    170 A MIND APART the result of the

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    172 A MIND APART He gets such enjoy

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    A Sophie Mind Apart Chapter 12 Soph

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    176 A MIND APART were not particula

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    178 A MIND APART It was at that mom

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    180 A MIND APART and social interac

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    182 A MIND APART She lacked the mot

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    184 A MIND APART ble as well. The p

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    186 A MIND APART smiled at her, not

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    188 A MIND APART In a sense all chi

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    190 Bibliography nal of the America

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    192 Bibliography comparing theory o

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    194 Bibliography tive behavior, and

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    196 Bibliography assisted instructi

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    200 Resources Phone: 219-662-1311 F

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    202 Resources NG7 2UH E-mail: help@

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    Index Index ABA. See Applied behavi

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    206 Index D Developmentally based i

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    208 Index Research in AS and outcom

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