Growing Up on the Spectrum Read online

  Table of Contents

  Title Page

  Copyright Page

  Dedication

  Acknowledgements

  SECTION I - Getting Started

  1. Introduction

  2. Terms, Interventions, and Techniques

  SECTION II - Making and Maintaining Good Friendships

  1. Introduction and Some General Rules About Friendship

  2. The Art of Conversation

  3. Outings and Get-togethers

  4. Parties

  5. Dealing with Bullying and Peer Pressure

  SECTION III - Making and Maintaining Successful Romantic Relationships

  1. Introduction

  2. Dating

  3. Sex

  SECTION IV - Making School Successful

  1. Introduction

  2. Middle and High School: Supported Independence

  3. College

  SECTION V - Beyond the College Years

  1. Introduction

  2. Jobs

  3. Living Conditions

  4. Legal Planning

  SECTION VI - Improving Daily Life

  1. Introduction

  2. Walking Out the Door Looking Good

  3. Managing Behavior

  4. Managing Modern Technology

  5. Improving Coexisting (aka Comorbid) Conditions

  An Afterword for Educators by Robert L. Koegel, PhD

  Resources

  Index

  Also by Lynn Kern Koegel and Claire LaZebnik

  Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life

  VIKING

  Published by the Penguin Group

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  First published in 2009 by Viking Penguin, a member of Penguin Group (USA) Inc.

  Copyright © Lynn Kern Koegel and Claire LaZebnik, 2009

  All rights reserved

  While the author has made every effort to provide accurate telephone numbers and Internet addresses at the time of publication, neither the publisher nor the author assumes any responsibility for errors, or for changes that occur after publication. Further, publisher does not have any control over and does not assume any responsibility for author or third-party websites or their content.

  LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA

  Koegel, Lynn Kern.

  Growing up on the spectrum: a guide to life, love, and learning for teens and young adults

  with autism and Asperger’s / by Lynn Kern Koegel and Claire LaZebnik.

  p. cm.

  Includes bibliographical references and index.

  eISBN : 978-1-101-01653-4

  1. Autism in adolescence—Popular works. 2. Asperger’s syndrome in adolescence—

  Popular works. I. LaZebnik, Claire Scovell. II. Title.

  RJ506.A9K635 2009

  616.85’88200835—dc22 2008041835

  Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise), without the prior written permission of both the copyright owner and the above publisher of this book.

  The scanning, uploading, and distribution of this book via the Internet or via any other means without the permission of the publisher is illegal and punishable by law. Please purchase only authorized electronic editions and do not participate in or encourage electronic piracy of copyrightable materials. Your support of the author’s rights is appreciated.

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  For our Roberts:

  We’re incredibly lucky to have your skill and enthusiasm supporting us in both our personal and professional lives.

  Acknowledgments

  First and foremost, we’d like to thank our children (six in total) for bringing so much happiness into our lives and for selflessly agreeing to let us tell some of their personal stories. Extra thanks go to Andrew for his contributions to this book, including all of the illustrations and many wonderful and honest personal essays. We also appreciate the support from our larger family—our parents, sisters, brothers, aunts, uncles, cousins, and friends—who listen, laugh, and cry with us.

  We’d also like to express our sincere appreciation to the children with autism whom we’ve met along the way and to their families. The world is a richer place because of people like them.

  Next, we are so grateful to everyone who contributed a personal essay. Our book has been hugely enriched by their expertise and their willingness to share their perspectives and personal stories about the trials and tribulations they’ve endured in the always unpredictable world of autism.

  Thanks to those who proofread this book for us—Bob Koegel, Rob LaZebnik, Brittany Koegel, Lee Kern, Whitney Smith, Rosy Fredeen, and Ashley Koegel—for all their helpful thoughts and comments. We also want to give a shout-out to the wonderful graduate students at UCSB, who are the best and the brightest, who enthusiastically work with people on the spectrum, and who have dedicated their lives to helping these individuals. The future of children on the spectrum is in good hands with people like you. Dr. Rosy Fredeen deserves special thanks for her skill, expertise, constant cheerfulness, wonderful personality, and feedback and suggestions for this book.

  We also greatly appreciate Rebecca Hunt for her impressive speed-reading skills, thoughtful comments, and enthusiasm throughout this entire process, and also Alexis Hurley for her continual support and encouragement over the years.

  Support for the research described in this book has been provided by the National Institute of Mental Health, the Department of Education, the First 5 California, and the families who have generously supported the UCSB Koegel Autism Center. We’d also like to express special thanks to the Kelly Family Foundation, the Kind World Foundation, and Eli and Edythe L. Broad—their extraordinary support of the Autism and Asperger’s Center, housed at UCSB, has greatly enhanced the lives of individuals on the spectrum.

  For more information on the Pivotal Response Treatment procedures described in this book go to www.education.ucsb.edu/autism.

  SECTION I

  Getting Started

  1. Introduction

  CLAIRE

  In 2004, when Dr. Koegel and I finished writing our first book together (Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life, Viking/Penguin), my son Andrew was just entering middle school, and the personal essays I included in the book were a look back at the first ten to twelve years of his life.

  He is, at the moment I write this, currently finishing up his sophomore year of high school. By the time this book is publis
hed, he will be a junior.

  A couple of years ago, I submitted an essay to the New York Times “Modern Love” column that was published the following month. I wrote about my son’s growing interest in girls and my fears that his autism might make it hard for him to find romantic happiness. After the article appeared, I received an outpouring of e-mails from parents all over the country who were also worried that their children would never have the social or romantic life that every parent hopes his child will have. Many of them expressed frustration that there was so little guidance or information available for parents of teenagers and young adults on the spectrum.

  Kids grow up. The book Dr. Koegel and I wrote four years ago set out to teach parents and therapists how to guide children who couldn’t speak to communicate, who couldn’t play with others to have a successful playdate, who couldn’t dress themselves or control their temper to do both. But those same kids who benefited so much from Overcoming Autism have been spending the last few years getting older, and their issues have grown up with them. Suddenly, the question is not simply “How do I teach my child to do this or that?” but a much more complicated “How do I teach my child not to need me to teach him anymore?”

  Kids grow up. A small child with big eyes gets his head patted by the strangers who pass his way, even if he ignores them. But a five-foot-nine fifteen-year-old boy with acne and an inability to make eye contact isn’t going to be greeted as warmly. He needs to learn the skills and tact to make his way in a world that no longer coos over the “cute little quiet boy” but suspiciously eyes the “weird” teenager.

  The stakes are higher and the risks are greater for kids who can drive, go to parties where alcohol is served, live in college dorm rooms, fall in love—and yet are still far more innocent and susceptible to manipulation than their peers.

  Dr. Koegel and I figured it was time to write a new book, one that continues where the original Overcoming Autism left off. In our first book, I wrote about autism from a parent’s perspective. In this book, we’re going one better: my son is contributing his own first-person perspective. Now an outgoing seventeen-year-old with a driver’s license, a summer job, and college looming on the horizon, Andrew can offer something Dr. Koegel and I can’t: the ability to tell you what goes on behind the locked door of a teenager who’s struggling not only with the emotional and physical changes every teenager goes through, but also with the additional challenge of being on the spectrum.

  Andrew’s involvement doesn’t mean I’m going to shut up: as a parent, I still have something to contribute—although I can’t help but notice that as we’ve been working on this book, much of what I add to these pages is along the lines of “what I’ve learned from my mistakes.” I haven’t always followed the advice in these pages; laziness, ignorance, and life’s chaos have all gotten in the way of my being the parent I’d like to be. On the plus side, Andrew is a gift of a child, kind and hardworking and supportive and ambitious. He is a success story. I can’t take credit for it but I can appreciate it. (And be grateful to my wonderful husband, who has always been far more active than I about getting Andrew out and involved.)

  Enough about our family—the reason this book was written is to give the world access to the brilliant advice and interventions of my friend and writing partner Dr. Lynn Koegel. The Koegel Autism Center at the University of California, Santa Barbara (UCSB), which Lynn runs with her husband, Robert Koegel, PhD, has a long waiting list of people from around the world who are eager to be trained in its unique Pivotal Response Training approach to behavioral interventions. Unfortunately, not everyone can make it to the clinic; everyone can, however, buy a book to provide the information that’s so eagerly sought.

  Throughout this book, I try to speak for all the parents of older kids on the spectrum by repeatedly calling out, “Help! What do we do in this situation?” And Dr. Koegel provides that help, drawing on her years of working with people of all ages on the autism spectrum as she explores the strategies and interventions that parents can immediately begin to use to help steer their children through the difficult preteen, teenage, and young adult years, while also gently and gradually pushing them toward a more independent future.

  DR. KOEGEL

  Even though we’ve come a long way, there’s still a long way to go when it comes to intervention for children with autism and Asperger’s syndrome. While we continue to make breakthroughs in our research, we’re also faced with the fact that very few people are adequately trained to work with individuals with autism. This is in addition to the fact that more evidence-based treatments still need to be developed, and it takes at least ten years for the results of successful research to get out to the real world.

  On the positive side, more children with autism are being included in regular education and community settings, are able to work and overcome the symptoms of autism. I’m optimistic that in the years to come, intervention will continue to improve so that all adolescents and adults will live socially rich and meaningful lives, and be treated with respect and dignity. Finally, I have hopes that our society will learn to provide families with support, so that they may live their lives without stress, isolation, and anxiety. Individuals on the spectrum are people with talents, humor, and unique personalities that need to be celebrated. Over the course of their lives, they face innumerable daily challenges with communication, academics, bullying, and learning how to read subtle cues, both in their environments and during social conversation. That’s got to be difficult! Hope, understanding, and more clinical research should move us ahead in the next decade.

  Some Statistics

  The Centers for Disease Control (CDC) currently estimates that over half a million Americans under the age of twenty-one have autism. There’s been a huge increase in the last few decades. In the sixties, about 1 in every 2,500 children was diagnosed with autism, but now the diagnosis rate is about 1 in every 150. The increase is so great that it cannot be explained by better diagnoses, better tracking, or criteria changes. It is truly an epidemic.

  In the early nineties, people became concerned and began regularly tracking the number of children with autism; at that time, the average age of the kids being diagnosed was about five years. These kids, and the decade of children who came after them, are now reaching adolescence and adulthood. Parents and professionals are desperate for more information and support, and have concerns about the future. What can they expect for their children? Jobs? Marriage? Do programs still work with older children even if their parents missed the so-called window of opportunity? Is early intervention the only path to success, or can something be done for older children and adults?

  Many children with Asperger’s syndrome aren’t even diagnosed until late elementary or middle school, because they don’t have the early language delays that raise a red flag, and their issues are primarily social. The later diagnosis means their families usually don’t have a therapeutic support system in place by the time the kids are in middle school and therefore often don’t know where to turn for help.

  One interesting change in the past few years is that as children with autism and Asperger’s syndrome become adults with autism and Asperger’s, in numbers greater than we’ve ever seen, they’ve started to demand the world’s respect for their differences and recognition of their talents. Our goal is to acknowledge the need to embrace the wonderfully quirky and unique talents of so many of these individuals, while still helping them adapt to society’s demands. All kids need guidance as they move from childhood to independence. We intend to help you figure out the best way to utilize and develop your older child’s strengths, to work on areas that need improvement, and to face the eventual move toward separation and independent living with courage, determination, and hope.

  How to Use This Book

  We divided the book into five main sections: making friends; romantic and sexual relationships; schooling; life beyond the school years; and finally, improving the issues that come up in daily life. Each secti
on is subdivided into more specific chapters.

  We realize that some of these areas may be more problematic or relevant for your family than others. For instance, if your child is in middle school, you’re not likely to be worried yet about life after college. And while some parents struggle to instill a respect for personal hygiene in their offspring, others can sleep well at night knowing their child would no more skip his morning shower than any other part of the rigid schedule he adheres to. So we welcome you to pick your way around the book, reading the sections that are most relevant to your child. Of course, you’re also welcome to read the whole thing straight through!

  Each chapter includes a series of questions and answers at the end. One of the ways in which Claire and I take advantage of our parent/therapist dichotomy is that she can ask the questions that parents still have after reading or hearing my advice, giving me the opportunity to address specifics and go deeper into the subjects parents worry about most.

  In this first section, we’ve included a chapter that explains the terms we use most often and repeatedly throughout the book and gives detailed descriptions of some of our interventions. While we try hard to avoid jargon, we do use terms that describe valuable procedures that you might not yet have been exposed to, so we wanted to take the time and space to describe each of them clearly. We recommend that you read, or at least skim, that chapter and acquaint yourself with all the terms we use before attacking any of the other sections, although you’re welcome to use it more as a reference and simply move back and forth when you come across a term you don’t recognize.

  Scattered throughout the book are thoughts and essays by both Claire and her son Andrew, reminding us that real life frequently alters the best laid plans of mice, men, and clinicians. Other people have contributed their firsthand knowledge to this book as well, in the form of personal essays, and we’re more grateful than we can say for their generous contributions, which enrich both our book and our shared knowledge of how best to help our children.