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A Parent's Guide to Asperger Syndrome and High-Functioning Autism How to Meet the Challenges and Help Your Child Thrive
By Sally Ozonoff Geraldine Dawson James McPartland
The Guilford Press Copyright © 2002 The Guilford Press
All right reserved.
Chapter One What Are Asperger Syndrome and High-Functioning Autism?
Joseph had always seemed like a brilliant child. He began talking before his first birthday, much earlier than his older sister and brother. He expressed himself in an adult way and was always very polite. When his mother offered to buy him a treat at the movies, for example, Joseph said, "No, thank you, M&M's are not my preferred mode of snacking." He showed a very early interest in letters and by 18 months could recite the whole alphabet. He taught himself to read before his third birthday. Joseph wasn't much interested in typical toys, like balls and bicycles, preferring instead what his proud parents considered "grown-up" pursuits, like geography and science. Starting at age 2, he spent many hours lying on the living-room floor, looking at maps in the family's world atlas. By age 5, he could name anywhere in the world from a description of its geographical location ("What is the northern-most coastal city in Brazil?"). Just as his parents suspected, Joseph is brilliant. He also has Asperger syndrome.
Nine-year-old Seth wasplaying video games in the family room while his mother bustled about the house cleaning up for the guests who would soon arrive. As she climbed a stepladder in the living room to change a lightbulb, she lost her balance and fell backward. While she lay on the floor gasping for breath, Seth walked by on his way to the kitchen for a snack, stepped over her, and said "Hi, Mom." Seth has high-functioning autism.
Clint turns 30 soon. He graduated from college with a degree in engineering, lives in an apartment in a nice section of town, recently bought a used car, and enjoys going to the movies. He is troubled, however, by his difficulty finding and keeping a job. Time and again, supervisors get frustrated by his slow work pace and difficulty getting along with coworkers. Clint gets stuck on details and finds it hard to set goals that eventually lead to completion of projects. After finishing a seasonal job cleaning hotel rooms at a ski resort, he tells prospective employers that he was "let go" without realizing that this term means "fired" to most people. Unable to find work for months, he visits a vocational counselor, who suggests a psychological evaluation. Testing reveals that Clint has high-functioning autism, which was never diagnosed.
Lauren is a teenager with the looks of a model. Despite this, she has no friends, nor does she seem particularly interested in having any. She still loves Barbie dolls at age 17 and collects every new model and outfit that comes on the market. At school, Lauren often appears to be daydreaming; when directions are given to the class, she does not respond as she sits smiling and occasionally talking softly to herself. Despite this, she is a straight-A student who excels in mathematics and physics. When other kids greet her in the hallways, she sometimes does not notice and other times looks away while mumbling a quick "Hi." Now the school psychologist has mentioned to Lauren's parents that she may have high-functioning autism or Asperger syndrome. How could their beautiful, perfect daughter have something like autism? her distraught parents wonder. And what on earth is Asperger syndrome?
Joseph, Seth, Clint, and Lauren all have what doctors now call high-functioning autism spectrum disorders. If your child resembles them in any way, you may have heard the names of the conditions falling under the autism spectrum umbrella: high-functioning autism and Asperger syndrome. And you probably have a million questions about them, just as Lauren's parents did: What are these conditions? What is the difference between them? What causes them? How could my unique and interesting child, who has so many strengths, also have such difficulties? What will the future bring for him or her, and us? This book will answer these questions and many more. In this chapter we define some important terms to help you decide if this book is relevant for you and whether it may help the person in your life who has similar strengths and similar challenges. We'll also tell you what we know about who has these disorders and what the future may bring to these children and their families.
The word autism was coined from the Greek word autos, meaning self. The term was first used to describe behavior in 1943 by Leo Kanner, a child psychiatrist at Johns Hopkins University in Baltimore. In his landmark paper, Dr. Kanner described 11 children who showed little interest in other people, insisted on routines, and displayed unusual body movements, like flapping their hands. Many of the children could talk: some could name things in their environment, others could count or say the alphabet, still others could recite whole books, word for word, from memory. However, they rarely used their speech to communicate with others. The children had a variety of learning problems in addition to their unusual behaviors.
For many years after Dr. Kanner's initial description, only those children whose behaviors were very similar in type and severity to those of the original cases were diagnosed with autism. Slowly, however, we began to recognize that autism has a wide variety of faces and can be found in children with good communication skills, who are of normal intelligence, who have few learning problems, and who show milder versions of the behaviors Dr. Kanner described. These are the so-called high-functioning individuals; this term has been defined in different ways but generally means having normal intelligence and a fairly good command of language. We now know that autism is not a narrowly defined condition, but rather a spectrum that varies in severity from the classic picture described by Leo Kanner to milder variants associated with good language and cognitive (thinking) skills. For this reason, we now use the term autism spectrum disorders. The subject of this book is high-functioning autism spectrum disorders.
Good language and cognitive skills mean that many children with these disorders, like Joseph and Lauren, do just fine in school and often get along well with adults. But in other ways, Joseph's unusual behaviors make life challenging. Joseph's intense interests often disrupt family activities; his parents are often not able to persuade him to leave his science projects to use the bathroom or come to the dinner table. On a recent trip to Disneyland, he insisted on bringing his globe, which had to be transported in a baby stroller throughout the park. Joseph's professor-like speech makes him stand out among his peers, who delight in teasing him and never accept his invitations to come over and play. Joseph has begun to make negative comments about himself ("I'm a geek"), and his parents worry about depression. Lauren, on the other hand, doesn't seem to mind being virtually friendless, but her parents are deeply saddened by her social isolation and the life that she is missing out on. Her mother bought her a dress for the junior prom, but Lauren refused to go; her mother spent the evening crying. Clint certainly has the intelligence to be successful, but his social awkwardness and blunt comments to coworkers ("Just get off your behind and do it") mean that he has never kept a job for longer than a few weeks. He is also underemployed: despite a degree in engineering, Clint has held a variety of manual labor and store clerk positions. And Seth illustrates one of the most far-reaching problems that people with high-functioning autism spectrum disorders have: difficulty with the kind of close, empathic relationships that are, in some ways, the essence of our humanity. Until her son was diagnosed with high-functioning autism, Seth's mother was convinced that she had in some way deeply damaged her son to cause such lack of regard for others and their feelings. When he was young, Seth would talk so loudly and behave so inappropriately in restaurants (for example, by taking food that appealed to him off other diners' plates) that the family was often asked to leave. Seth's mother remembered sympathizing with a neighbor whose daughter was in a wheelchair about the restrictions their children placed on their families. The neighbor listed several things her family couldn't do, such as go hiking together, and then asked in astonishment, "What can't you do?" And Seth's mother, taken aback, said, "Why, we can't do anything! Seth's behavior is so active and inappropriate in public, but he seems so normal, that everyone gives us terrible looks. It's just too hard on us, especially Seth's siblings." These conditions take a toll not only on the individuals who have them, but also on their families.
At about the same time that scientists began to realize that there was such a thing as high-functioning autism, Dr. Lorna Wing, an eminent British researcher at the Institute of Psychiatry in London, brought something called Asperger syndrome to the attention of the English-speaking world. Dr. Hans Asperger, an Austrian pediatrician, had first described Asperger syndrome in 1944, apparently without any knowledge of Leo Kanner's work. Because Asperger's paper was written in German and published during World War II, it was not widely read. Until Dr. Wing's paper was published in 1981, the condition remained virtually unknown in the United States and other non-German-speaking countries. In her paper, Dr. Wing summarized Asperger's original publication, but she also noted the similarities between Asperger syndrome and autism, raising for the first time a question that is still with us today: Are Asperger syndrome and autism the same disorder or two separate ones?
Because Asperger syndrome is in a sense only 20 years old, a relatively small amount of reliable scientific data has been collected on it. To date the research has found few differences between Asperger syndrome and high-functioning autism. This is not to suggest that there are no differences between the two disorders-though that is a matter of ongoing debate. There is, for example, a learning profile sometimes associated with Asperger syndrome that may occur less often in high-functioning autism. Chapter 2 goes into more detail on the distinctions between the two diagnoses. What is important to parents of children who may have one of these problems is that the two conditions present many of the same challenges and that similar treatments seem to help both disorders. Research suggests that what has been written about high-functioning autism (HFA) is relevant and applicable to Asperger syndrome (AS), so the practical guidance in this book will help those with either condition. In fact, we will use the term AS-HFA throughout this book to include both conditions, but will make it clear when any information is specifically relevant to only one diagnosis or the other.
Unfortunately, this does not mean that your child's doctor will use the same term that we use. Because there is still much professional disagreement about how autism, high-functioning autism, Asperger syndrome, and autism spectrum disorders fit together, a doctor who evaluates your child may use several terms. Complicating matters, some doctors will disagree with our view that high-functioning autism and Asperger syndrome are similar (more on this in Chapter 2). To make things even more confusing, there is also a condition called pervasive developmental disorder not otherwise specified (or PDDNOS for short)-something of a catchall label for children who show some of the characteristics of autism or Asperger syndrome, but cannot be fit neatly into either slot. As a parent, you will want to make sure that your child receives the most accurate diagnosis possible, but, in the case of these disorders, you need to be aware that precision may elude us for some time to come. What's important is that you feel confident that the picture you have of your child coincides with the picture your child's doctor offers and, regardless of the label, that the treatments suggested fit with your child's weaknesses and strengths.
If you are living with someone with Asperger syndrome or high-functioning autism, you probably wouldn't notice many differences between the conditions from day to day or from moment to moment. In fact, as you'll read in Chapter 2, the primary difference between the two conditions lies in children's behavior before they turn 3 years old. That difference can be discovered by a doctor who takes a careful history of your child's early development, but a doctor who observes your child for only a while, especially if he or she is of school age or older, would be hard-pressed to tell Asperger syndrome from high-functioning autism any more than a layperson could.
What High-Functioning Autism Spectrum Disorders Look Like
No one will display all the features that characterize these disorders; some individuals may exhibit only a few. Just as no two nonautistic people, even identical twins, are absolutely alike, no two individuals with Asperger syndrome or high-functioning autism behave in exactly the same way. All, however, have some difficulties interacting with other people and some odd or repetitive behaviors.
Problems with Social Interaction: Active but Odd
The essence of AS-HFA is difficulty with social interactions, although the striking social impairments of more classic autism, such as extreme remoteness and persistent avoidance of others, rarely appear. Some children, like Lauren, don't go out of their way to start conversations or interact with others but do respond if other people approach them. Other individuals show interest in people and enjoy their company; they may even want to join groups and make friends. However, their ability to do so successfully is limited by their difficulty knowing what to do or say in social situations. They may be awkward and unsure during interactions. They may give the impression that they are not interested in the person they are talking to because they don't follow the "rules" of social interaction. Most of us naturally know that we should look at the person we're talking to, smile, and nod occasionally to signify that we are paying attention. People with AS-HFA, however, don't seem to appreciate these unwritten rules of social engagement. Their behavior while out in public may sometimes be inappropriate or embarrassing when, in addition to failing to use these social niceties, they violate clear social conventions, such as keeping certain opinions to themselves or refraining from asking overly personal questions. It may indeed be true that your neighbor's upper arms look like "fat sausages," but this is information best kept to yourself.
People with high-functioning autism or Asperger syndrome often appear not to understand other people's feelings or points of view, which makes their social interactions even more difficult.
Excerpted from A Parent's Guide to Asperger Syndrome and High-Functioning Autism by Sally Ozonoff Geraldine Dawson James McPartland Copyright © 2002 by The Guilford Press. Excerpted by permission.
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