A Parent's Guide to High-Functioning Autism Spectrum Disorder

How to Meet the Challenges and Help Your Child Thrive

The Guilford Press

Contents

What Is High-Functioning Autism Spectrum Disorder?

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 autism spectrum disorder.

Nine-year-old Seth was playing 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 light bulb, 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 autism spectrum disorder.

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 have gotten frustrated by his slower 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 his 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 autism spectrum disorder, which was never diagnosed.

Lauren is a teenager with the looks of a model. Despite her beauty, 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 the teacher presents directions to the class, she does not respond as she sits smiling and occasionally talking softly to herself. Despite this apparent inattention, 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 autism spectrum disorder.

Joseph, Seth, Clint, and Lauren all have what is referred to as autism spectrum disorder or ASD. If your child resembles them in any way, you may also have heard the labels "high-functioning autism," "Asperger syndrome," or "pervasive developmental disorder" (often abbreviated as PDD). And you probably have many questions: What is ASD? What causes ASD? How is it that my unique and interesting child, who has so many strengths, could also have such challenges? What will the future bring for my child and us? This book will answer these questions and many more.

In this chapter we define some important terms to help you decide whether this book is relevant to 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 a specific set of behaviors 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 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 disorder (or ASD). The subject of this book is the high-functioning end of the spectrum.

Good language and cognitive skills mean that many children with ASD, like Joseph and Lauren, often do just fine in school and tend to 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 unable 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 taking along 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 rarely accept his invitations to come over and play. Joseph has begun to make negative comments about himself ("Nobody likes me"), and his parents worry about depression. Lauren, on the other hand, doesn't seem to mind being virtually friendless, but her parents are worried about her social isolation and the social life that she is missing. A boy invited her to the junior prom, and her mother bought her a dress, but Lauren refused to go; her mother spent prom evening worrying whether her daughter would ever make any friends. Clint certainly has the intelligence to be successful, but his social awkwardness and blunt comments to coworkers ("It's too bad you broke up with your boyfriend, but we're here to work, not talk") 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 another problem that some people with high-functioning ASD have: difficulty reading other people's emotions and thus understanding empathy. Until her son was diagnosed with ASD, Seth's mother was convinced that it was something she did that had led to her son's difficulty with responding appropriately to others and their feelings. When he was young, Seth would talk so loudly and behave so unusually in restaurants (for example, by taking food that appealed to him off other diners' plates) that the family was sometimes 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 difficult 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 can be stressful not only for the individuals who have them, but also for their families.

At about the same time that scientists began to realize that autism was a spectrum disorder and that there were high-functioning forms of it, 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 children with the condition 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 high-functioning autism the same disorder or two separate ones?

Asperger syndrome was first included in the manual used by doctors to make psychiatric diagnoses, the Diagnostic and Statistical Manual of Mental Disorders (or DSM), in 1994. People began being diagnosed with Asperger syndrome shortly afterward, and it rapidly became a popular diagnosis to describe individuals with milder forms of ASD, who had good language and cognitive skills. The question of whether it was different from autism remained, and many researchers conducted studies to try to answer this question. Over the next 20 years, dozens of investigations were carried out and research evidence accrued that, in fact, there were virtually no reliable differences between Asperger syndrome and high-functioning autism. People with the syndromes share the same challenges and the same strengths in their learning profile. They require the same treatments, respond equally well to those interventions, and have similar outcomes later in life. Their brains look similar in brain-imaging studies. And perhaps most telling, Asperger syndrome and autism seem to have the same causes. It is common for families who have two children on the spectrum to have one with Asperger syndrome and one with autism. Even within identical twin pairs, who share the exact same genetic profile, one can be diagnosed with Asperger syndrome and the other one with autism. It began to look more and more to both researchers and clinicians like high-functioning autism and Asperger syndrome were two names for the same condition. Therefore, when the diagnostic manual used by all psychiatrists and psychologists to make clinical diagnoses was revised in 2013 (abbreviated as DSM-5), Asperger syndrome and high-functioning autism were wrapped up into a single diagnosis called autism spectrum disorder (ASD). Children who would previously have met criteria for either Asperger syndrome or high-functioning autism will now meet criteria for ASD. Chapter 2 goes into more detail on diagnostic procedures, recent changes in the newest version of the DSM, and how they may affect your child and you. What is important for parents to know is that whatever the conditions are called (high-functioning autism, Asperger syndrome, ASD, or the broader term pervasive developmental disorder, or PDD), they present many of the same strengths and challenges and similar treatments will help individuals who have been given any of these diagnoses. The practical guidance in this book will help those with any of these diagnoses. We will use the term high-functioning autism spectrum disorder, or simply ASD, throughout this book to include all conditions.

WHAT DOES HIGH-FUNCTIONING AUTISM SPECTRUM DISORDER LOOK LIKE?

No one will display all the features that characterize ASD; some individuals will exhibit fewer features than others. Just as no two people without ASD, even identical twins, are absolutely alike, no two individuals with ASD behave in exactly the same way. All, however, have some difficulties socially interacting and communicating with other people and show some odd or repetitive behaviors.

Problems with Social Interaction and Communication

The core feature of ASD is difficulty with socially interacting and communicating with others. Challenges in this area span a wide range. The striking social impairments of more classic autism, such as social remoteness and avoidance of other people, rarely appear in higher-functioning children like those we focus on in this book, but difficulties nonetheless exist. 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 ASD, 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 refraining from asking overly personal questions or keeping certain opinions to themselves. 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 ASD often appear not to understand other people's feelings or points of view, which makes their social interactions even more difficult. Often these abilities, natural to the rest of us, are delayed or do not develop fully even as the child gets older. Empathy usually begins emerging in infancy, when young children start to show an interest in and a concern about the feelings of others. It's not uncommon in day care centers to see babies break into sympathetic wails when another infant cries or to see toddlers take a toy or an adult to a crying child in an attempt to comfort their peer. Preschoolers are fascinated by the moods of others and often talk about friends being angry or sad. In their pretend play, young children enact scenes in which characters are sick or upset, grappling with understanding such states and how to respond to them.

In contrast, many children with ASD have basic difficulty appreciating the emotions of others (and often their own as well). As Seth's mother could attest, some, but not all, children with ASD don't notice when parents, siblings, or other children are hurt, sick, or sad, and even when they do they rarely offer comfort. Or they may horribly misunderstand others' feelings. One boy burst into laughter after his father fell down the stairs, tearing ligaments in his ankle. When his horrified mother asked why he was laughing, he explained, "Dad is jumping around and making funny faces like a clown." Clint described an interaction with a coworker who made "a strange face" after he told a joke. He didn't think much about it until later, when he saw a photograph of a woman bearing the exact same facial expression. He showed the picture to his mother and asked how the woman felt. She said, "Offended, I think." Clint has felt bad about insulting his coworker ever since, but says, "If someone is insinuating something through their face or body, without being direct, I just can't grasp it."