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...