Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's
Publisher: Penguin Books
ISBN 10: 0143116665
ISBN 13: 978-0143116660
Publisher: Viking Adult
ISBN 10: 9780670020676
ISBN 13: 978-0670020676
The first comprehensive guide to helping teens with autism—from the acclaimed authors of Overcoming Autism
With an estimated half a million Americans under twenty-six on the autism spectrum, this book offers the reassurance, solace, and practical solutions that so many people are searching for. Following up on their work in Overcoming Autism, which offered advice for teaching young children on the spectrum, Lynn Koegel and Claire LaZebnik now present strategies for working with teens and young adults living with this complex condition. Addressing universal parental concerns, from first crushes and a changing body to how to succeed in college and beyond, Growing Up on the Spectrum is a beacon of hope and wisdom for parents, therapists, and educators alike.
About the Author
Claire LaZebnik is a published novelist and magazine writer. She lives with her husband and four children in Pacific Palisades, California.
Excerpt. © Reprinted by permission. All rights reserved.
Table of Contents
SECTION I - Getting Started
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
5. Dealing with Bullying and Peer Pressure
SECTION III - Making and Maintaining Successful Romantic Relationships
SECTION IV - Making School Successful
2. Middle and High School: Supported Independence
SECTION V - Beyond the College Years
3. Living Conditions
4. Legal Planning
SECTION VI - Improving Daily Life
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
Also by Lynn Kern Koegel and Claire LaZebnik
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life
Published by the Penguin Group
Penguin Group (USA) Inc., 375 Hudson Street, New York, New York 10014, U.S.A.
Penguin Group (Canada), 90 Eglinton Avenue East, Suite 700, Toronto, Ontario,
Canada M4P 2Y3 (a division of Pearson Penguin Canada Inc.)
Penguin Books Ltd, 80 Strand, London WC2R 0RL, England
Penguin Ireland, 25 St. Stephen’s Green, Dublin 2, Ireland (a division of Penguin Books Ltd)
Penguin Books Australia Ltd, 250 Camberwell Road, Camberwell, Victoria 3124, Australia
(a division of Pearson Australia Group Pty Ltd)
Penguin Books India Pvt Ltd, 11 Community Centre, Panchsheel Park,
New Delhi-110 017, India
Penguin Group (NZ), 67 Apollo Drive, Rosedale, North Shore 0632, New Zealand
(a division of Pearson New Zealand Ltd)
Penguin Books (South Africa) (Pty) Ltd, 24 Sturdee Avenue, Rosebank,
Johannesburg 2196, South Africa
Penguin Books Ltd, Registered Offices: 80 Strand, London WC2R 0RL, England
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.
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.
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.
For our Roberts:
We’re incredibly lucky to have your skill and enthusiasm supporting us in both our personal and professional lives.
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.
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 published, 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.
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.
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 section 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.
But First . . .
Before you move on to the rest of this book, there are some important things that every parent of a child on the spectrum should be aware of, no matter what stage of life the child is in. So here’s some general advice that I’d like to pass on to you:
Find the Right Therapists to Work with Your Child
There are many programs out there and many different people to choose from. To find the right therapy, you need to first make sure that there will be measurable goals. If you find that your therapist doesn’t have any measurable goals, you may want to consider looking for another one. Measurable goals enable the therapist to measure the pretherapy levels of your child and demonstrate that your child is progressing under intervention.
For example, if your child stays in his room on the computer all day long, the therapist will need to make goals to change that behavior and be able to document the steps being taken toward moving him into a more active social life. Or if your child is bringing up inappropriate topics on a regular basis, your therapist should be documenting a step-by-step program for improving the topics during social conversation. In short, make sure the intervention is practical and working, and that means monitoring it on a regular basis to be sure that your child is improving.
Similarly, if you find someone whom your child is just not motivated to see, try to switch therapists. Some adolescents and young adults on the spectrum like therapists with a more assertive personality, and others prefer a more “kick back” personality type. Finding the right personality match will help your child stay motivated.
Never Give Up
I saw a nine-year-old last week. He spoke in short sentences and only to request items. The parents told me that the school and other state agencies wanted to cut way back on his services because they felt that he wasn’t making gains. He was easy to teach and picked up a few new things just in the few hours I worked with him. I couldn’t believe that anyone wanted to give up on him. We also saw a fifty-year-old man recently who was nonverbal. The past interventions he’d had were ineffective. After a few weeks of our working with him, he began using a few words—for the first time in his life. He had simply never had some of the newer and more motivating interventions. As a parent, or a caring professional, you’ll need to make sure that no one gives up on your child—especially not you!
Treat Your Child as Normally as Possible
I said this in Overcoming Autism, and I want to emphasize it in this book. People on the spectrum need to be treated as normally as possible, even though they have a disability. No matter what age your child is, try to keep her learning things other students are learning, participating in regular school classes, attending social functions, working, and so on. And have the same behavioral expectations of her that you would of any other child.
One thing that’s especially tricky during adolescence is balancing enough support for your child with the need to encourage independence. With a younger child, you can control most aspects of his life and still be doing essentially what every parent around you is doing—in other words, it’s “normal” to oversee and regulate his diet, his friendships, his schoolwork, his free time, and so on. But as kids grow older, most of them will wrest control away from their parents, and even though for some families it can turn a little dark and ugly, it’s a necessary step on the road to independence. Most kids on the spectrum, though, need more support than other kids at all ages, and part of your job now is to recognize when you can fade into the background and trust your kid to find his own way, and when you must intervene with supervision, monitoring, and direction (even if other kids his age are more independent). It’s tricky. Your goal is to step back, but sometimes stepping back will only leave your child flailing about helplessly.
We’ll try in this book to give you some guidelines for continually aiding and monitoring your child without babying her or squelching her fragile independence, but that delicate balance is something you’re going to have to constantly be aware of.
It’s now just as important that your older child’s or adult’s intervention be coordinated across all settings as it was when he was younger. If he still needs intervention, make sure that everyone is consistently doing the interventions and helping your child to use newly learned behaviors.
If you’re teaching your child to ask more questions in social conversation, make sure that everyone who works with him or is close to him, including his teachers, knows to encourage him to ask questions when chatting with him. If you think that your child needs to learn a new skill or behavior, make sure that you get everyone on board. Your child will learn faster and maintain the behavior longer if everyone is coordinated.
Think Long Term
Now that your child is older, you’ll need to take the long view. If you want her to fit in, for example, make sure that she isn’t watching movies that younger children watch. Always insist that the goals for your child are meaningful and will help her in the long term. Finally, you will need to make sure that your expectations are high enough. At home, make sure that you aren’t doing too much for her. She’ll need to learn skills that will help her live independently and be self-sufficient. So everything you do, every goal you set, and every issue you (and the school) target should be making a difference in your child’s life in the long run.
Don’t Follow Fads and “Miracle Cures”
This may seem obvious: when you call them fads and put “miracle cures” in quotation marks, everyone can agree that you’re talking about something that’s probably spurious. The problem is, when you’re researching approaches, as all parents do, you’ll often hear about treatments, medications, and even medical procedures that sound as if they might be reputable. Maybe someone you know is following some new medical protocol and swears by it. Or a parent you meet tells you how his son improved with some kind of therapy you’ve never heard of. Do research before you plunge into anything! Ask the most established professionals you trust what they’ve heard about this latest approach and whether they’ve seen results with their own eyes. Read everything you can—not just the information the proponents of the method are putting out there, but any studies that have been done proving or disproving its efficacy. And if there aren’t any studies? That’s a problem. No studies mean the method isn’t research based, and its success is probably subjective. If no one you trust knows anything about it, it probably isn’t the miracle you’ve been hoping for.
Helping your child isn’t about miracles—it’s about effort, care, and thought. The ultimate results may feel miraculous when you look back over the previous decade or two and realize how far that little boy or girl who once couldn’t even speak has come, but you’ll have worked for those results every step of the way.
It’s almost funny to look back over the decade and a half since Andrew was diagnosed with autism and remember all the “cures” that have come and gone in that time. I won’t bore you by listing them all, but as a general rule, if the latest approach involves pig body parts, don’t go there.
I know a lot of people who are doing serious autism research, trying to figure out the genes and the triggers that lead to the neurological damage that leads, in turn, to the symptoms of autism. There probably isn’t one single cause, so there might never be one single “cure.” I’m not ruling it out, but I’m also not sitting around waiting for it to come along, which is a good thing because, thanks to all the behavioral interventions we did instead of waiting for that cure, Andrew is doing great.
I trust the people I’ve worked with who are in the field to let me know if there is a real breakthrough. I won’t do anything invasive or drastic until I see some hard research and hear from experts whom I respect that it works. And I’m certainly not going to abandon the strategies that have worked for us for so long to go chasing after some unproven dream pill or procedure.
Sure, I’ve played around with my son’s diet from time to time and tried some fun therapies that were recommended to me, because why not? Even the silliest therapy can have a beneficial effect if your child and the therapist really bond and have fun together. That doesn’t mean it “works” in any medical sense. It just means that keeping your child engaged and involved is always a plus for his progress. We had a “music therapist” who played the piano and sang with Andrew when he was really little and he smiled his way through the whole thing. Did I think the music had some kind of mystical curative power? Not for a second. But the therapist was warm and loving and Andrew liked to sing. So overall it was a positive and social hour for him.
In the end, though, it’s the behavioral interventions that have made the real difference for us over the years, and I think that’s true for most of the kids I know who are doing really well. I’ve known some parents who wanted to “cure” their child so badly that they went chasing after every miraculous claim that popped up. Not only were their hopes cruelly dashed over and over again (usually after a short period of believing they saw the miracle they’d hoped for), but they lost valuable time when they could have been doing the interventions that work, and it slowed their kids’ progress.
Hope is a wonderful thing. Expect incredible things for and from your child, but anchor those expectations in the procedures, interventions, and therapies that have proven track records.
Love Your Child as He Is and Help Him Grow
There are two emotional traps parents of kids on the spectrum can fall into. One is to keep thinking, “This isn’t my child; my child is hidden behind this child.” The other is to think, “My child is unique and that’s a wonderful thing, and I shouldn’t attempt to change her in any way.”
Don’t fall into either trap.
The first is wrong because there is no “real” child hidden behind the child you know. Look at him—that’s your kid. Love him—he’s your kid. Enjoy his strengths and quirks—they make up the unique person who is your kid. But also help him overcome his areas of weakness—he’s your kid and you owe him that.
It’s interesting that parents who wouldn’t hesitate to teach a typical child better manners or improved skills question the morality of working with their child on the spectrum to make her more outgoing or better able to navigate the world around her. You’re not betraying her because you want her to be more comfortable in social situations. You’re not forcing her to be “like everyone else.” You’re doing exactly what a parent should do: guiding your child to be the kind of person the world responds to positively, so her life will be easier and filled with friendship.
Don’t Be Afraid
That’s easy to say, right? But you have to overcome your fear of what might happen to your child out in the world and start encouraging him to be independent and self-reliant. It’s easier and much less terrifying to keep your child close to your side and believe that you’ll always be there to protect and defend. But—and you know this—as your kid grows up, he needs to find his way in the world without a parent always there to pave the way for him.
Once a Parent, Always a Parent
Once we’re parents, we’re parents forever. We need to be there for our kids as they grow up. When my kids went away to college, I was surprised how many times they called me and came home to visit. They needed support, advice, and encouragement even as adults. If you read the literature, most people get jobs through connections, and make friends through other friends and family. Kids on the spectrum may need a little more support from their families than typical developers, but all kids need some. It’s okay to worry—all parents do. It’s okay to keep giving your child advice—all parents do. And it’s a great idea to make sure that you have a support system around your child to help her reach her potential in her career, in recreational activities, and with her peer group.
Take Care of Yourself and Your Family
Remember: one important aspect of keeping your goals high for your child is expecting him to be a supportive family member. That means allowing other members of the family as much time pursuing their dreams and goals as he gets. Too often the teenager with special needs ends up dictating what the rest of the family does—a vacation gets picked because “he’ll like it and behave,” a restaurant is chosen because “he won’t fall apart,” a parent doesn’t show up at a sibling’s event because “we’re worried about taking the other one.” Believe me, we understand how hard it is not to give in to making life easier for your child on the spectrum and simplifying things that way, but you’re not doing anyone a service. It’s far better to teach your child to control his behaviors and respect other people’s needs than to defer to him out of fear or pity. The goal is to make his life and yours as normal as possible.
You also want any siblings to feel just as loved and attended to as the child who’s on the spectrum—don’t center every family activity around just that one child, but let all the kids have their turn in the spotlight.
In general, the siblings I’ve met through our clinic work have been wonderful—generous and supportive and proud of their brother’s or sister’s successes. We’ve even had several graduate students who went into the field because of their experiences growing up with a sibling on the spectrum. Don’t take advantage of your kids’ good nature, but shower them with praise, attention, and love. If one of them expresses some concern to you that her sibling’s behaviors are affecting her life in a negative way, don’t ignore her or tell her to “get over it.” You need to fix the problem. I’ve seen kids who’ve been physically abused by their siblings on the spectrum and others who are afraid to invite friends over because their siblings’ behaviors aren’t controlled at home. It’s your responsibility as a parent to see that interventions are put in place to solve these problems! There’s specific information on how to do that in this book, and in our first book, which also includes a long discussion of the stress that an autism spectrum disorder can cause a family, and how best to cope with it. Please, if you’re experiencing anything along those lines, read that book as well as this one and take action. Follow whatever steps you need to keep your family close, happy, and functioning.
2. Terms, Interventions, and Techniques
I’ve started reading some of the other chapters, and you keep talking about “priming” and “prompting.” I know how to prime a pump and prompt an actor, but I have no idea what you mean in this context. Please explain.
I remember one of the first times I met with Dr. Koegel, way back over a decade ago. We had taken Andrew to see her and she was instantly and brilliantly focusing on the areas we needed to help him on. We talked about the need to decrease his “hand puppets” (the way he self-stimulated at the time) and while she said it was fine now and then at home, we could decrease his stimming at school with a “self-management program.” I nodded and smiled and agreed that a self-management program was a good idea.
I had no idea what a self-management program was.
Of course, I should have just asked—Dr. Koegel would have happily explained it to me. But I was embarrassed to admit I didn’t yet know the term. We took some of the Koegels’ books home with us so I was able to look it up later, but I did have to bluff my way through a good part of our first discussion.
Writing Overcoming Autism together was an eye-opening experience for me, because suddenly the terms I had only passing acquaintance with became very real, very useful, very meaningful ways to help your child. “Functional analysis” sounds complicated and technical. It’s not. It’s really just thinking deeply and rationally about what your child is getting out of a certain behavior, and keeping notes on what you’re discovering. It isn’t overwhelming—although the resulting epiphany can be nothing short of mind-blowing. (“You mean telling him he has to leave the dinner table is actually encouraging his bad behavior at meals?”)
Both Dr. Koegel and I feel very strongly that we want everything in this book to be crystal clear to the layperson as well as the educator. So we’re making sure we explain fully any terms we use repeatedly throughout the book.
A couple of years ago, I appeared on the ABC hit show Supernanny, which was seen by millions of viewers around the world. The show focuses on decreasing problem behaviors in typical children. The most common technique used on the show is the time-out.
The producers had invited me to work with a child with autism on the show. They picked a three-year-old boy from Florida who didn’t say any consistent words and loved to spin in circles. He could entertain himself for hours on end and didn’t seek his parents’ attention the way a child without autism would. The producers were taken aback when I told them that their tried-and-true time-out approach to altering behavior wasn’t going to work with this kid and that we would have to approach him in a different way—which I subsequently did successfully.
Time-outs work amazingly well with typical kids. You know the drill: the child misbehaves and has to sit alone in his room or in the corner of a room until he’s ready to behave. Time-outs are very effective for most children—so effective that when used properly (with praise for good behavior), most kids don’t need any other type of program.
Unfortunately, when you’re dealing with a kid on the spectrum, a time-out may be the greatest reward you could give her. Remember, one of the criteria for a diagnosis of autism is that the child has to have trouble with socialization—kids with autism don’t seek to share enjoyment with others, they don’t develop great peer relationships, and they don’t often engage in the reciprocal emotional interactions that we see in typical children. So it’s no wonder time-outs don’t work for our kids—they don’t mind being alone! In fact, they usually like it. After all, it beats having to engage in some classroom assignment that isn’t interesting or in some demanding social interaction that’s like speaking a foreign language. (Of course, there are some kids with autism who thrive on social attention and for whom time-outs might work, but they’re definitely in the minority.)
Similarly, if they don’t have a super big peer group, grounding older kids on the spectrum as a punishment doesn’t work either. Most teenagers with autism are more than happy to stay safely at home.
Another thing that doesn’t work with kids on the spectrum? The guilt trip. Most moms are great at that. Mine would say, “Is there anything you think you should be telling me?” (in that tone of voice that implies culpability). Um, what could she possibly have found out? But kids with autism don’t usually get too bothered by the guilt thing, maybe because they’re not as attuned to nuance of tone. Also, we’re working with some middle and high school kids on the spectrum right now who have trouble completing assignments, and they don’t seem to feel the same kind of anxiety about not getting them in that motivates most kids.
So . . . we usually can’t use guilt, anxiety, or the desire to be included as a motivating force when working with kids with autism, which leaves us with the need to use a whole other bag of tricks. Some can be applied to a variety of different behaviors, and that’s why we’ve chosen to include them in this chapter of techniques and procedures that every parent should know.
Because we’ll be suggesting that you use these methods to tackle different problem areas in many of the subsequent chapters, we’re not only defining the terms here but we’re also including a detailed description of how to incorporate them into your child’s program of interventions. Once you understand the process, you’ll be able to individualize these approaches and be comfortable using them for whatever issues may crop up with your child at any time.
Pivotal Response Treatment (PRT)
Years ago, before there were very many kids with autism, my husband was watching a clinic session and pointed out that the kids just didn’t seem to be enjoying themselves during intervention. He had noticed that while the kids were learning, neither they nor their therapists(!) looked very happy. Because my husband is one of those people who verbalizes every one of his thought processes, he continued to ramble on about how the only thing they seemed motivated to do was to get out of the session.
You have to remember that this was back when we were having kids sit in chairs for hours at a time while we held up flash cards to teach words, concepts, colors, and so on. When they responded incorrectly, we told them “no,” and when they were correct, we rewarded them with verbal praise and a small edible treat.
My husband’s brilliant succession of thoughts got us thinking about how long it took to teach each behavior. We started chatting about how typical kids just pick up things without being drilled over and over again. That led us to a long line of research that looked at more effective ways of teaching. Our first publication focused on communication and incorporated motivational procedures that helped children learn to talk faster. That procedure was called the Natural Language Paradigm, or NLP. We soon realized that the motivational components that were helping children learn to talk so much faster also worked well at improving a number of other behaviors, from social interaction to academics.
The other good news was that there were positive by-products of these motivational procedures. In short, the kids seemed to improve all around. This began our long search for “pivotal” areas—areas that, when taught, would result in a broader range of positive changes in the kids. We were, in essence, trying to develop an intervention that was more efficient and more effective. That’s how the term Pivotal Response Treatment was coined, and our subsequent research over the years has focused on finding pivotal areas. To date, we have studied motivation, self-management, initiations, responding to multiple cues, and empathy.
We talked a lot about motivation in Overcoming Autism, and it’s just as important with older children and adults. As I mentioned above, after many years of research, we’ve identified several components that reliably improve motivation—or, specifically, increase responding while simultaneously decreasing disruptive and off-task behavior. Meanwhile, during the intervention, the children smile more, look more engaged and interested, and overall appear happier. These motivational components are as follows:
• Choice. No matter how old you are, you appreciate being given a choice. Strive to always give your child some choices in the desired task—they can be about choosing the assignment, the materials he’s going to work with, where he wants to sit, the order of work, the writing implement, whom he’s going to work with, and so on. The more kid-appropriate choices you can add to any given activity, the more involved and motivated your child will be. Try letting him pick a recipe to cook for dinner (you can also use the recipe to practice his reading and even have him do some fractions by doubling the recipe), or pick out his own outfit, or decide which summer camp he wants to go to. Your child will be a lot happier and more motivated if you give him choices.
• Interspersing easy and hard tasks. Let’s face it, if you struggled through work every day or picked up a book where every word was one you hadn’t heard before, you’d probably avoid that job or that book. That’s exactly the situation in which we all too frequently place kids with autism. Too often we find something they can’t do, then repeatedly drill them on it until they learn it. Doesn’t sound like fun, does it? Now think about giving the kids lots of easy tasks, so they build up their confidence, then every now and then throw in a hard one. Because they have the momentum going, they’ll tackle the hard task willingly and surmount it a lot faster.
• Task variation. Everyone gets bored doing the same thing over and over again, and teens and young adults on the spectrum are no exception. Learning is much faster if tasks are varied frequently. This goes along nicely with interspersing easy with hard tasks and makes the teaching sessions a lot more fun.