Uniquely Human: A Different Way of Seeing Autism - Hardcover

Über die Autorin bzw. den Autor

Barry M. Prizant, PhD, CCC-SLP, is among the world’s leading authorities on autism, with more than forty years of experience as a scholar, researcher, and international consultant. He is an adjunct professor at Brown University and coauthor of The SCERTS Model: A Comprehensive Educational Approach, now being implemented in more than a dozen countries. Dr. Prizant has published more than 120 articles and chapters and has received many awards. The author of Uniquely Human: A Different Way of Seeing Autism, Dr. Prizant lives in Cranston, Rhode Island, with his wife, Dr. Elaine Meyer, and their teenage son.

Tom Fields-Meyer is author of the critically acclaimed memoir Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son, a finalist for the National Jewish Book Award. His work has appeared in The New York Times Magazine, The Wall Street Journal, the Los Angeles Times, and The Washington Post. The coauthor (with Barry M. Prizant) of Uniquely Human: A Different Way of Seeing Autism, and former senior writer for People, he lives in Los Angeles, where he teaches in the UCLA Extension Writers’ Program.

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Uniquely Human

INTRODUCTION

A Different Way of Seeing Autism

NOT long ago I was meeting with a group of educators at an elementary school when things suddenly got personal. I was there in my role as a school district consultant for programs serving children with special needs, and as the meeting was breaking up, the principal asked to see me privately. I figured that he wanted to discuss a staff issue, but the principal—an intense, serious man—closed the door, pulled his chair close to mine, looked me in the eye, and began telling me about his nine-year-old son.

He described a shy, quirky, and solitary youngster who had grown increasingly remote and isolated, spending much of his time playing video games by himself and rarely mingling with other children his age. Then he got to the point: a psychologist had recently diagnosed the boy with Autism Spectrum Disorder. The principal leaned forward, putting his face within inches of mine.

“Barry,” he asked, “should I be scared to death?”

It is the sort of question that has become all too familiar to me. Almost every week I meet parents who are intelligent, capable individuals, often confident and accomplished in other realms. But when these mothers and fathers encounter autism, they become disoriented. They lose faith in their own instincts. Facing this unexpected and unfamiliar territory, they feel bewildered, frightened, and lost.

A few years earlier, the person asking was a world-renowned musician. He and his wife had invited me to observe their four-year-old daughter. The girl had not been responding well to intensive autism therapy that required sitting for long periods and responding to directions and commands. Her parents wanted a second opinion about the best approach to helping and supporting her. On my first visit to the family’s sprawling home, the father gestured for me to follow him into another room.

“Can I show you something?” he asked. He reached behind an upholstered chair and grabbed a paper shopping bag, then stuck his hand inside and pulled out a toy. It was a Bumble Ball, a battery-powered, textured rubber toy with a motor inside to make it vibrate when it was switched on. I could see that it had never been removed from its original packaging.

“I bought this for my daughter last Christmas,” he said apprehensively. “Was that a bad thing? I thought she would like it.”

I shrugged. “I can’t see how it could be bad,” I replied.

“Well,” he said, “her therapist told me it would make her more autistic.”

It made no sense: a brilliantly talented celebrity so paralyzed by the words of a thirty-year-old therapist that he was scared to give his own daughter a toy.

For more than four decades it has been my job to help parents like these, people from all walks of life who are struggling with the realization and reality that their children have autism—and to support the educators and various professionals who work with these children. More and more often I meet parents who have been thrown off balance—who suddenly feel perplexed, sad, and anxious about their children, not knowing what an autism diagnosis means for the future of their child and their family.

Their distress and confusion stem partly from information overload. Autism Spectrum Disorder is now among the most commonly diagnosed developmental disabilities; the U.S. Centers for Disease Control estimates that it affects as many as one in fifty school-age children. A flood of professionals and programs has emerged to serve these children: physicians, therapists, schools, afterschool programs. There are karate classes and theater programs for children with autism, sports camps and religious schools and yoga classes. At the same time, charlatans and opportunists with minimal or no experience—and even some with professional credentials—advertise their approaches as “breakthroughs.” Unfortunately autism treatment is a largely unregulated enterprise.

All of this has made life even more challenging for parents. Which professional to trust? Who can explain your child? Which treatment will succeed? Which diet? Which therapy? Which medication? Which school? Which tutor?

Like any parents, these mothers and fathers want what’s best for their children. But, struggling with a developmental disability they don’t understand, they don’t know where to turn.

My job for four decades has been to help them transform their desperation into hope, to replace anxiety with knowledge, to turn self-doubt into confidence and comfort, and to help them see as possible what they thought was impossible. I have worked with thousands of families touched by autism, helping them to reframe their experience of the condition, and in turn build healthier, fuller lives. That’s what I hope this book will help you to do, whether you are a parent, a relative, a friend, or a professional working to support these children and their families.

It starts with shifting the way we understand autism. Again and again I have witnessed the same phenomenon: parents come to perceive their child as so radically different from others that the child’s behavior seems beyond comprehension. They have come to believe that the tools and instincts they would bring to raising any other child just won’t work with a child who has autism. Influenced by some professionals, they see certain behaviors as “autistic” and undesirable and perceive their goal as eliminating these behaviors and somehow fixing the child.

I have come to believe that this is a flawed understanding—and the wrong approach. Here is my central message: The behavior of people with autism isn’t random, deviant, or bizarre, as many professionals have called it for decades. These children don’t come from Mars. The things they say aren’t—as many professionals still maintain—meaningless or “nonfunctional.”

Autism isn’t an illness. It’s a different way of being human. Children with autism aren’t sick; they are progressing through developmental stages as we all do.I To help them, we don’t need to change them or fix them. We need to work to understand them, and then change what we do.

In other words, the best way to help a person with autism change for the better is to change ourselves—our attitudes, our behavior, and the types of support we provide.

How to do that? First, by listening. I have worked at the highest levels of academia and served on the faculty of an Ivy League medical school. I have published my work in dozens of scholarly journals and books. I have addressed conferences and presented workshops in nearly every state and across the globe, from China to Israel, from New Zealand to Spain. Yet my most valuable lessons about autism have come not from lectures or journals. They have come from children, their parents, and a handful of extremely articulate adults with the rare ability to explain their own experience of having autism.

One of those is Ros Blackburn, a British woman who speaks more insightfully than practically anyone I know about what it feels like to go through life with autism. Ros often repeats this mantra: “If I do something you don’t understand, you’ve got to keep asking, ‘Why, why, why?’ ”

This book is about what I have learned in forty years of asking why—what I have come to understand by asking what it feels like to have autism.

Concerned parents share the same kinds of questions: Why does he rock his body? Why won’t he...