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

ISBN-13: 9780143126546

Media Type: Paperback

Publisher: Penguin Publishing Group

Publication Date: 03-25-2014

Pages: 432

Product Dimensions: 5.40(w) x 8.40(h) x 1.10(d)

Lynn Kern Koegel is one of the world’s foremost experts on the treatment of autism. She and her husband, Robert L. Koegel, Ph.D., founded the renowned Autism Research Center at the Graduate School of Education at the University of Californian, Santa Barbara. She lives in Santa Barbara, California. Claire LaZebnik is a published novelist and magazine writer. She lives with her husband and four children in Pacific Palisades, California. Koegel and LaZebnik are also the authors of Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's.

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Introduction

There are few things in life scarier than having a child diagnosed with any kind of special need, and autism is one of the scariest disabilities, because the diagnosis tells you nothing about a child's prognosis. No one can honestly say to you, "We know exactly what your child will be like when he's twenty."

People will, however, feel free to comment on the diagnosis in every way, most of them unhelpful. You'll hear things like "They're crazy, he's just a late talker," "My cousin's brother's kid had autism, and they changed his diet and he was cured," and "Oh, my god, are you going to put him in an institution?" You'll start reading articles and combing the Internet for helpful information, and you'll find that there are a lot of conflicting opinions out there—some people swear by certain approaches, others by completely different ones, and some even believe a kid with autism should just be left alone, since "he'll be whatever he's going to be, and nothing you do will make any difference."

Now, that's where they're wrong. So wrong it's mind-boggling.

Everything you do will make a difference.

There's a lot you can do for your child, more than you may be aware of right now. That's why we wrote this book—to show you how intelligent, well-planned early interventions based on years of field research can improve the symptoms of autism enormously, often to the point where many or all of the symptoms of autism might be said to have been "overcome." Some children with autism become indistinguishable from their peers.

Does that sound miraculous to you? It's not. There are no miracles. It would be nice if a nonverbal kid suddenly startedtalking in sentences, if a self-injurious kid suddenly decided he preferred playing the piano to hitting himself in the head, and if a withdrawn boy suddenly realized that it's fun to play with other kids. Of course, none of that's simply going to happen. Well, not suddenly, anyway.

The good news, though, is that if you remove "suddenly" from the previous paragraph, it's a completely different story, because we have seen all these things happen. They just didn't happen suddenly or out of the blue—they were the result of hard work, a well- planned schedule of interventions, and a consistency of approach stretching from the family to the school to all therapies and clinical work.

It Takes Hard Work

There are no miracle cures in autism, just a lot of blood, sweat, and tears. As of yet, there are no pills, shots, diets, or any other "quick fixes" that cure autism completely and across the board. To date, there are no medications that can make broad and widespread improvements in children with autism. Further, many medications can have serious and harmful long-term effects on young children. However, there are well-researched, time- proven procedures that can make a difference—excellent behavioral interventions that allow families and professionals systematically to reduce or eliminate each undesirable symptom and improve each area of need.

If your child was just diagnosed, you might need some time to get used to the idea. (See chapter 1, "Diagnosis: Surviving the Worst News You'll Ever Get.") Take a few days. Cry, moan, scream, bitch, blame your spouse's family—do whatever you need to for a little while. A very little while. Then roll up your sleeves and get to work. Your child needs you to help him get better.

How to Use This Book

We wrote this book because we wanted to get the message across that with the right interventions, you can improve a child's prognosis enormously.

In these pages, we offer both a general understanding of how to tackle the symptoms of autism in someone you know and a description of the specific interventions you'll need to do so. It's a starting point and a way of unifying your approach across the board. It is not a replacement for finding talented and dedicated clinicians and therapists in your area to aid you in your journey, but we will offer advice on how to find those professionals if you're a parent, or how to better serve your patients if you're already in the field.

Separating Out Symptoms

If you glance through the table of contents, you'll see that by and large we've organized the book by symptoms—the various ways that the disability of autism tends to make itself known. You may be used to child-rearing advice books that are organized by the child's age or by his temperament, and that offer a wide range of advice that may or may not be applicable to your child at that point in time. Ours is different.

We chose to focus on one symptom at a time for a very simple reason: every child with autism is different and needs a different intervention plan. This plan needs to be based on that specific child's needs and the symptoms being exhibited, not on some general idea of how a kid with autism behaves.

There can't be one intervention plan for all children with autism, because autism is just a name for a cluster of symptoms that can (but don't always) include repetitive motions, aggression, a lack of speech development, and an inability to interact socially. By taking each symptom your child expresses and systematically addressing it with a comprehensive intervention plan (which we will show you how to do), you will see gradual, steady improvement in your child or client.

Our approach has grown out of years of research and positive outcomes and is based on what's known as "behavior interventions" or "applied behavior analysis"—in other words, if a child is exhibiting problematic behaviors, we can intervene, decreasing the negative behaviors by introducing and reinforcing positive behaviors that take their place. Just a few short decades ago, children with autism were given up as hopeless cases, incapable of learning, and often stuck in institutions for the rest of their lives. Now we know that not only can these kids learn, but the brain's ability to lay down new neural pathways is astounding. It's important to be aware of this history, because there are still people out there who believe children with autism cannot be taught, that their futures are written at birth. These people are clinging to archaic beliefs that have long been proven inaccurate, so don't allow anyone to discourage you from teaching your child.

Different Levels, Different Needs

We're also aware that children with autism fall in very different places along the spectrum of the disability. Because our approach is geared toward an individual child's needs, it's appropriate for use with children of all different levels and skills. It's not one- size-fits-all but rather allows you to tailor any and all information to the child you're concerned about. The single diagnosis of autism, or Autism Spectrum Disorder, can cover a very wide range of strengths and weaknesses.

When you first read this book, you may choose to focus on the behaviors that are most problematic in your child. Does he hum and flap his arms? You'll definitely want to read the chapter on self-stimulatory behaviors. Is she aggressive toward other children? Take notes on chapter 3, "Tears, Meltdowns, Aggression, and Self-Injury: Ending the Cycle." Not talking even though he's over three? Chapter 2, "Ending the Long Silence: Teaching Your Child to Communicate," covers our approach to teaching verbal skills. And so on. If your child doesn't have a problem in any specific area, you might want to read the chapter about it, anyway, but concentrate your work first on the areas that are causing the most stress to your family and the most difficulties for your child. Ironically, we address these challenging areas by drawing on the child's strengths.

These "focused interventions"—that is, interventions that focus on areas that are causing difficulties for your child—are not a replacement for a multicomponent plan that helps your child learn to communicate, socialize, and behave well in mainstream everyday settings. You still need to be sure that your child's comprehensive needs are being met with systematic, effective, and caring interventions, but the focused interventions will help you address specific areas in an efficient way, so that you see the most change in the least amount of time, and these changes can help improve your family life and allow your child to participate in more community activities.

Other chapters in this book will help you ensure that your child is a motivated, enthusiastic learner and prevent future problems from cropping up.

A Literary Support Group: Reading for Empathy

This book is a description of interventions that will help your child overcome the most severe symptoms of autism. But it's also the story of one family's life with autism, from diagnosis to better days, aided by those same interventions. We want every parent of a child with autism—or any clinician who works with one—to know that she isn't alone in her frustration, fears, hopes, anxieties, and occasional despair.

This book is written by two women. Lynn Kern Koegel, Ph.D., is the clinical director of the Autism Research and Training Center at the University of California, Santa Barbara. Dr. Koegel and her husband, Robert Koegel, Ph.D., are experts in the field of autism, and together they run the UCSB Autism Research and Training Center, one of the oldest research and clinical programs in the country. The interventions used at the UCSB Autism Center are data-based applied behavior analysis (ABA) procedures that have been shown to improve the symptoms of children with autism. The aim of the clinic is to develop and teach the children "pivotal responses," a method of focusing interventions on specific areas whose improvement has been shown to lead to widespread positive improvements in many other symptoms of autism. Research has shown that focusing on certain behaviors results in greater gains in less time and more positive long-term outcomes.

Too many treatments developed in the past were so unpleasant that the child had to be dragged into the clinic sessions kicking and screaming, and then long periods of time would elapse while the child's disruptive behavior was ignored—or, even worse, punished. In contrast, the approaches described in this book are individualized, family centered, and child friendly. In fact, the goal is for the child to have fun while learning— so much fun she doesn't even know she's doing "work."

The Koegels' work with children has been nationally recognized and acclaimed, and they were recipients of the Children's Television Network's Sesame Street Award for "brightening the lives of children." The interventions that Dr. Koegel recommends in this book are humane, cutting-edge, developed and tested in the field, and generally fun for the whole family.

Dr. Koegel's coauthor, Claire LaZebnik, did not set out to become any kind of expert on autism. She's a novelist and the mother of four children, the oldest of whom was diagnosed with autism at the age of two. Necessity has obliged her to become a full-time (with lots of overtime) organizer, implementer, and coordinator of behavior-based interventions for her son's autism. Throughout this book, Claire describes her own thoughts, fears, and experiences as the mother of a child with autism and how her family dealt with each specific symptom.

Dr. Koegel gives advice and describes interventions; Claire talks about trying to make interventions work in real life, with all the difficulties, stresses, and high emotions that come when a child in the family has very special needs.

Stories of Hope

This is a book about hope. We're optimistic, but not irrationally so. We'd like you to see for yourself how much children with autism can and do improve when a well-thought-out intervention plan is formulated and consistently followed, so Dr. Koegel has included several different families' sagas, starting with where they were when they first sought her help, and ending with where the child is today. We hope these true stories will inspire you. In virtually every one, the child had behaviors or delays that were so overwhelmingly disruptive, the family could hardly cope. And yet, with the right help and interventions, these children have all grown into happy, contributing teenagers and adults.

If you're feeling discouraged, it will do you good to read these stories. They're proof that even the most difficult child will improve under the right circumstances. And we're going to give you the tools to create those right circumstances.

Taking Care of Business and Yourself

When you have a child with a disability, it affects every area of your life. So we've included some chapters that aren't about symptoms and interventions but are more generally about how to deal with various aspects of living with autism—how to process the original diagnosis, how to keep your family life intact, and how to deal with your child's schooling needs. Once again, the one-two punch of both a professional and a mother allows you to see the subject at hand from every angle. Chances are, if you have a child with autism or are working with one, you've had to deal with many of the issues we discuss in these chapters.

Why This Book?

Currently there is an epidemic in the number of children being diagnosed with an Autism Spectrum Disorder. Almost every major periodical has devoted a cover story to the disability. Virtually everyone knows someone who's dealing in some way with the specter of autism.

This book describes specific, concrete interventions, tested in the field and designed to fit into a family's daily interaction, and which, if correctly pursued, will immediately begin improving the symptoms of a child with autism, while at the same time offering the emotional support and understanding a parent needs during what may well be the toughest period of his or her life.

Dr. Koegel has worked extensively with children of all different levels and skills. Claire knows what it's like to be the mother of a kid with special needs. We want our readers to feel both understood and empowered.

You may feel like the work is hard and the road long. It is, but with the help of this book, you're not going to slog through it alone or ignorant.

When your child is first diagnosed with autism, you're about as vulnerable as a person can be. All you want is to make things better for this little person you love. You're terrified that this mysterious disability will ruin your child's life forever, that he'll never know romantic love or what it's like to go to college, or—your worst nightmare—maybe even how to talk. You cast about, praying for someone to come along to make everything okay again.

That's when you have to be most careful.

Sorting Through the Choices

All that vulnerability makes you a nice plump target for anyone who can promise you instant success. But don't buy into that. There are no miracle cures, no overnight successes, in autism—at least not that I've seen, and I've been looking hard. There are, however, good, effective interventions, documented by years of research and rigorous scientific study. Do those.

The very first therapist we saw was a speech pathologist recommended by our pediatrician when our son Andrew was two and a half years old. Andrew was completely nonverbal. I think he may have made a couple of animal sounds, but that was it. At some point after Roberta had been working with Andrew for a while and we had, on her advice, taken him to the Neuropsychiatric Institute of UCLA, where he was officially diagnosed with autism, she sat down with us and said, "I think he'll learn to talk. But it's not going to be an easy or a fast process. Be prepared for a lot of hard work and for it to take a very long time."

Oh, great.

Back in those days, I had a recurring dream where I'd be somewhere with Andrew, and he'd suddenly turn to me and say something—not just a word or two, but a perfect full sentence. And I'd feel this incredible sense of relief, like the world had been put right. Until I woke up again. And then it was awful to lie there and know that it wasn't true, that Andrew still couldn't even say "Mommy."

People were always telling me stories about kids who didn't seem to be able to talk at all but who were just biding their time and, when they did speak, spoke perfectly. I was still nursing a tiny hope that Andrew would be one of the kids who would do that. I had thought that by taking him to see a speech pathologist, I'd be jump-starting the whole language acquisition thing, and within weeks of starting to see her, he'd "get" how to talk. So it was pretty tough to sit there and hear a professional tell us that nothing was going to happen quickly.

I think that if another therapist had miraculously appeared just then and said, "Are you kidding? I can have this kid speaking in full sentences by the end of the month," I would have followed that second person anywhere or paid her anything. Since that didn't happen, though, I stuck with Roberta.

Who was one hundred percent right about Andrew. His language acquisition was a slow process and required years and years of speech therapy. Even after he started saying words, he was still almost entirely echolalic for a long time—that is, he repeated parts of our sentences but was unable to construct his own.

That's the bad news. The good news? Roberta was also absolutely right when she said Andrew would start talking eventually. His language did come. Slowly, painfully, at times maddeningly—but it came. Today, at the age of twelve, he speaks more or less like other kids his age—maybe slightly more haltingly, and there are some oddities that I'll discuss in later chapters, but nothing anyone would notice from just chatting with him casually.

Roberta was always honest with us, even when she was telling us something we didn't want to hear. She was open and communicative, sharing the frustrations and the breakthroughs, making it clear we were a team and would face each step together. She became and remains a dear friend, and we learned to replace unreal dreams of a miracle with joy in the actual progress our son was making.

"Trust Me. I'll Make Miracles Happen."

Now contrast our experience with a conversation I had not long ago with a friend of a friend, who had called me for some advice. She had recently hired a therapist whose m.o. was to whisk her screaming kid off and drill him for long periods in a separate room, no parents allowed, and not much parent-therapist communication taking place after, either. This mom said neither she nor her child was comfortable with this arrangement, but when she tried to talk to the therapist about her concerns, he said, "You want results? I can tell you right now—the only way your child will improve is if he continues to see me. If you stop the therapy, you'll be harming your child and destroying any progress he might have made."

So she was terrified and as distressed as a parent could be—her instinct told her the guy was no good, but she was scared that firing him would harm her son's progress. And her entire life was centered on helping her child make progress.

So I told her what I thought: A therapist who plays on your fears to keep you bound to him isn't a good person or a good therapist. Neither is one who makes extravagant promises about how well your child will do with his help and only with his help. A good therapist shares his work and knows he's part of a team.

The Interventions in This Book

What you'll see, as you read this book, is that the most effective interventions aren't miraculous or dependent on any one specific therapist. In fact, what's so great about the methods in this book is that they're logical and straightforward and user-friendly. Which isn't to say you shouldn't have professionals working with your child. It takes a team of professionals and family members, working together, to create a plan and to keep a steady flow of teaching and reinforcement going at all times. But anyone who's smart, dedicated, and willing to learn can certainly contribute.

Knowledge should always be shared. If an intervention is successful for your child, everyone who comes in contact with him should know it. And the same goes for an unsuccessful approach—people should know to avoid it. Consistency is key.

Trust Yourself

All of this is to say, trust your guts a little bit when it comes to the people who work with your child. Recognize that there aren't miracles, but there should be steady progress, and the good guys acknowledge both these things. Stay away from anyone who plays on your fears and insecurities, who says he knows your child better than you do, who doesn't let you in the room when he's working with your child or at least tell you what he's doing in there, who promises miracles, who demands your trust without earning it.

You want to put your trust in someone? Trust your kid. He's the one who's going to be doing all the hard work, and odds are, he'll succeed. Trust that he'll try his best to overcome the worst of this disability. My brother used to call Andrew the hardest- working kid in L.A., and I still think Andrew works harder on any given day than anyone else we know, since he has to learn and memorize so much of what comes naturally to the rest of us. The motivation is there, though—you can see his pride and relief at every gain he makes.

You Don't Have to Be Extraordinary

One last thought: You know those mothers in those other autism books, the personal- memoir type? The mothers who are tough and strong and do scientific research on their own and never take a break from working with and fighting for their child?

I'm not like that at all. I am so not a mother tigress. I'm fairly shy, I'd rather go out to lunch with my kid than sit in a room and drill him, I'll do anything to avoid confrontation, and I know absolutely nothing about the science of autism except that someone somewhere is trying to locate the genes for it, which would be helpful information, I guess.

I'm totally in awe of the kinds of mothers I've read about in those other books, the ones who knock down doors to get their kids what they need, who contact every expert they hear of, who question authority and read any bit of information they can get their hands on. They deserve their child's success, and I hope every one of them finds it. But I'm not like that, and if it's not in your nature either, I don't think you need to be to help your child.

You just have to take the right steps and be willing to do some work.

Start by reading this book.

Chapter One
Diagnosis: Surviving the Worst
News You'll Ever Get

Autism is one of the most alarming diagnoses a parent can hear. Every parent has hopes and dreams for her child, and often these can be shattered when the child gets diagnosed with autism. Most other diagnoses dictate a clear course of action and lead to an undisputed likely outcome, but every child with autism is different and will progress differently. There is no known cause and no known cure. Not only is it a serious disability—it's also a bewildering one.

I love my job. In fact, I am one of the few people in the world who can honestly say that each day I get up, I feel fortunate to be able to do something I love. But delivering the news that a child has autism is the one part of my job that I hate. Fortunately, most people who bring their children to see us already have a diagnosis or at least a suspicion that their child has autism—after all, they are coming to an "autism center." But when I do have to be the one to tell a family that their child has autism, it's painful and difficult. The one consolation I can give the parents is that with good intervention their child is likely to improve, and that although I cannot read the future, many children do improve enormously.

What Is "Autism" Anyway?

To understand what autism is today, a little history is helpful. Relatively speaking, the field of autism is young. In 1943 the term autism was first used by Leo Kanner, who wrote a paper entitled "Autistic Disturbances of Affective Contact." Autistic literally means "alone," and that's what Kanner observed—a tendency in these children to want to be alone. In this paper, published in the Nervous Child (a journal that no longer exists), Dr. Kanner described eleven children between two and eight years old who had similar symptoms, which included difficulties communicating with others, difficulties interacting with others, and unusual interests. Prior to this article, children with these symptoms were usually labeled "schizophrenic."

Although the symptoms of autism have been refined, these three general areas still continue to provide the basis of the symptoms of the spectrum. That is, to be diagnosed with autism, children must have difficulties socially interacting with others; they must have impairments in communication; and they must also show restricted interests. This sounds pretty straightforward, but it's complicated by the fact that although most agree that the disability is neurological, no biological marker has been found. That means that there is no blood or chromosomal test that can tell you if a child has autism. The diagnosis is simply based on observation of the three symptoms, and the expression of these symptom areas can vary considerably. For example, a child who socializes fine with adults but has no interest in children his own age would qualify, as would a child who has absolutely no interest in either adults or other children. A child who echoes everything another person says, a child who can make short sentences but cannot maintain a conversation, and a child who says nothing whatsoever would all qualify under the impaired-communication symptom. And finally, the child who spends all day riding her rocking horse, the child who spends hours each day lining up his mom and dad's shoes in a certain specific order, and the child who only plays with one toy repeatedly would all be a "yes" on the restricted-interests category.

To make things even more confusing, most children express some of these symptoms, so it's not even a simple "Do they have this symptom?" but the more complicated question of "To what extent do they have this symptom?" that determines where they fall on the continuum. In other words, does each symptom area fall within or outside the typical range?

If your child has difficulties in all three areas (social, communication, and restricted interests) that are outside of what would be expected from a typical child, she would meet the diagnostic criteria for autism. Now, let me complicate things even more for you: there are other disabilities that fall into the Autism Spectrum category.

For example, Asperger's syndrome occurs when the child doesn't really have any delays in language per se, but does have difficulties in social interaction. These children will also tend to have special interests and problems making conversation. For example, we work with one little boy who only wants to talk about lavatories in airplanes. Another only wants to talk about Rolex watches. Kids with Asperger's syndrome can become experts on certain topics, but these topics may be of little or no interest to others, while they themselves often show little interest in what occupies their peers.

Then, there is PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), also called Atypical Autism. Children are labeled with this when they have only two of the three categories. That is, they tend to have difficulties with social interaction and either communication difficulties or restricted interests, but not both. So, as you can see, over time, in an attempt to make the diagnosis more homogeneous, more subcategories of Autism Spectrum Disorder have been defined.

Hard News to Get

I saw one family not long ago with a nineteen-month-old son—cute as could be. But Caleb didn't say one single word, he wasn't interested in anyone, and he spent the full two hours we were with him spinning in circles. He didn't play with any toys in the room and didn't respond to his name. He had such clearly pronounced symptoms of autism that there wasn't even any question in my mind what his diagnosis should be.

The parents had a book on autism with them and had brought Caleb to our center because the child's cousin had autism. I assumed they understood what we were dealing with and told them that we would be able to work with him. But then they asked if he had to have autism to participate in our center. At that moment, I realized that they hadn't yet accepted that any diagnosis had been made. So, as gently as I could, I said that Caleb appeared to have the three symptom areas associated with autism. To my surprise, they said they were hoping I would say that nothing was wrong with him. Nothing. That word was piercing, and I got that weird feeling like the blood is rushing out of your head.

I pointed out Caleb's specific symptom areas—that he wasn't talking yet (notice I said yet), that his social areas appeared to be a little delayed, which could happen if he wasn't talking, and that while he didn't interact much, he did seem to enjoy cuddling with his parents, which was a great starting point. I told them that there were good treatments available and that we would just take one symptom at a time and work on each one, and I was confident we would make progress.

The dad, who was quite well read and informed, said that although he agreed that his son didn't talk and wasn't interested in others, he really didn't see any restricted interests