Explaining Bizarre Behavior
When Robert Vaughn's kindergarten teacher asked her students to name something larger than a TV, the precocious 5-year-old answered, "The entire universe." When she asked for something smaller than a TV, Robert replied, "The nucleus of a carbon atom." These aren't the responses you'd expect from a kindergartner, but as Robert's mother, Laurajean, points out, nothing about her son's development has ever been typical.
"Intellectually, Robert is way beyond his peers," the Wallingford, Connecticut, mom says of her now-9-year-old son. "But he can't do many of the things they can do, and it's frustrating for him." He has never had a playdate, he's just learning how to initiate a conversation with other kids, and he even has trouble looking someone in the eye.
Laurajean affectionately refers to her son as "the little professor." An energetic redhead with round glasses that he periodically pushes to the bridge of his nose with one finger, Robert speaks very rapidly. He tries to pack in as much information as possible about spaceships and galaxies, his current obsessions. "I prefer talking to adults more than children," Robert says matter-of-factly. "I like to monologue, and kids won't listen as long as adults will."
Robert has Asperger's syndrome, a newly recognized developmental disorder that's related to autism. Most people -- including many doctors, psychologists, and educators -- know little, if anything, about it. Unlike most autistic children, kids with Asperger's often have advanced vocabularies that make them seem more gifted than disabled. But socially, they lack even the most basic skills.
The condition was first recognized in 1944 by Viennese pediatrician Hans Asperger, but his work was not introduced to the English-speaking world until the 1980s. Although Asperger's syndrome is still relatively rare, diagnosed cases have been on the rise since 1994, when it was first included in the Diagnostic and Statistical Manual for Mental Disorders (the bible for the psychiatric profession). Studies suggest that anywhere between 1 in 500 and 1 in 10,000 people suffer from Asperger's, and about eight out of nine people diagnosed with the disorder are boys.
Some advocates believe an environmental factor may be contributing to the steady increase, but most experts argue that kids with Asperger's syndrome were simply not diagnosed-or were misdiagnosed- before the disorder became official. "These kids have always been here, but nobody knew what to do with them," says Australian psychologist Tony Attwood, Ph.D., author of Asperger's Syndrome: A Guide for Parents and Professionals (Taylor & Francis) and one of the world's leading experts on the disorder.
Although Asperger's -- and autism in general -- was once believed by many doctors to be the result of poor parenting, scientists now know that it is caused by deficits or delays in the development of the part of the brain normally involved in social reasoning. "Most people know how to make friends, how to read a face, or how to respond to someone's feelings without even thinking," Dr. Attwood explains. "But children with Asperger's don't."
In fact, researchers at Yale University School of Medicine, in New Haven, Connecticut, detected a difference between the MRI scans of brains of people with Asperger's syndrome and those of a typical brain. When most people look at a human face, a different area of the brain is activated than when they look at an object. But people with Asperger's perceive faces as if they were inanimate objects.
That probably helps explains why kids with Asperger's syndrome lack empathy; they don't realize that other people may have thoughts and interests that are different from their own. They'll interrupt a conversation and start spewing out facts about their pet interest-which could be something as arcane as medieval history, deep-fat fryers, or ceiling fans -- even if it has nothing to do with what the other children are talking about.
Not surprisingly, researchers are finding a genetic component to all autistic spectrum disorders. "If you have one autistic child, your chance of having another is 1 in 20," says Fred R. Volkmar, M.D., Ph.D., a professor of child psychiatry and pediatrics at Yale who is currently studying 900 families of children with Asperger's syndrome. "Although the definitive data has not come out yet, we think that 30 to 40 percent of the immediate family members of a person with the disorder have at least some social difficulties, if not full-blown Asperger's." Robert Vaughn's 16-year-old brother, Charles, also has Asperger's, and his 12-year-old brother, David, is a high-functioning autistic.
Diagnosis Can Be Difficult
and have trouble writing. Some also have a hard time processing and integrating sensory information. For example, they may find it difficult to look at and listen to someone at the same time or be oversensitive to the feel of certain fabrics or the smell of certain foods. And like all autistic children, kids with Asperger's have trouble making transitions and are comforted by routine.
Because Asperger's syndrome manifests itself in so many ways, it's not always easy to diagnose. The major obstacle is that the condition wasn't well-known when most of the doctors who practice today went to medical school, Dr. Volkmar explains. In addition, "these are very verbal kids," he says. "People assume that a person's verbal skills are representative of his general level of functioning, and so they think these kids are behaving badly on purpose."
Children are commonly diagnosed at about age 8 or 9, but some slip through the cracks until adolescence. Part of the problem in di-agnosing Asperger's at a younger age is that all kids can exhibit some of the hallmark signs. "The fact that a 3-year-old doesn't participate in group play or that a 4-year-old is very interested in space travel doesn't mean he has Asperger's," says Michael D. Powers, Psy.D., director of the Center for Children With Special Needs, in Tolland, Connecticut, and editor of Children With Autism: A Parent's Guide (Woodbine House). You should be concerned only if your child has several of the characteristics.
The Vaughns suspected Robert had a problem when his preschool teachers told them that he wasn't interacting with the other kids. Fortunately, because his brothers were already enrolled in Dr. Volkmar's study at Yale, Robert was identified at age 5 as having some form of autistic disorder.
However, in most parts of the country, experts on Asperger's syndrome are few and far between, and parents must embark on their own odyssey to find out what's wrong with their child. It took ten years for Ellie Churchill, of Wynnewood, Pennsylvania, now 16, to be accurately diagnosed. Her parents, Kathy Haley and Rick Churchill, had alternately been told that Ellie had ADD and needed Ritalin, that she was depressed and should take Prozac, and that she had autistic tendencies. "She's been evaluated four or five times by the school system," Haley says. "Had it been left to them, we'd probably never know she has Asperger's. They didn't even know what Asperger's was."
A Parenting Challenge
The general lack of awareness of Asperger's syndrome is probably the chief reason that it's so hard to parent a child with the disorder. "My kids were kicked out of two preschools because they had lots of tantrums, and the teachers couldn't handle them," says Carol Wilkerson, of Edwardsville, Illinois, who has 12-year-old twin boys with Asperger's. "The message you get from schools, grandparents, and neighbors is that you're a bad parent."
Parents also quickly realize that the usual discipline techniques don't work with Asperger's children. "Before my son was diagnosed, I really thought that if I looked at him in a stern way and used that 'mom' tone of voice, he'd do what I said," says Patricia Romanowski Bashe, coauthor of The OASIS Guide to Asperger Syndrome (Crown). "But in fact, he didn't hear any difference in my tone of voice, and my threatening look meant absolutely nothing to him."
Obsessive behavior is another difficult thing for parents to deal with. Because these children don't understand the social cues that dictate how people interact, the world seems chaotic to them, Dr. Attwood explains. Cataloging information about their specific interests is a way for them to make order out of chaos and cope with stress.
Robert's obsessions have evolved over the years. "When he was 4, he loved tape measures," his mother recalls. "He liked pulling them out and then letting them snap back in." Over the years, he started collecting wire, ribbons, and metal rods, which he adds to a huge sculpture. In recent years, he's also become fascinated with Star Wars, spaceships, and cruise ships. His parents have their hands -- and their living room -- full because Robert's older brothers have their own obsessive pursuits. "You just do what you have to do in order to keep the peace," Laurajean says.
Learning Social Skills
Some children with Asperger's breeze through their first few years of school because of their advanced verbal skills. But about the time they get to third grade, other kids start noticing that they're different and often target them for teasing. Because kids with Asperger's don't always understand the implied meaning behind teachers' words (they take everything very literally), they may also be branded as defiant. One school psychologist recalls an incident in which a teacher told her class to sit down: Most of the students knew to return to their desks first, but the child with Asperger's just plopped down on the floor right where he was standing.
Despite their neurological deficits, kids with Asperger's syndrome can be taught the social nuances that others learn intuitively. "They need social skills as a major part of their school curriculum," says Jeanne Angus, director of LearningSpring Academy, in New York City, one of the few schools created for kids with Asperger's. The classrooms have pictures of facial expressions on the walls, which are labeled with the emotions they represent, and teachers use mirrors to make students more aware of their own expressions.
However, there are only a handful of these specialized schools, and most kids with Asperger's are too high-functioning to fit into traditional special-ed programs. Robert attends a public elementary school and, thanks to his mother's advocacy, works with various specialists to help him function in this mainstream setting. Slowly, as awareness of the disorder grows, parents are demanding that schools provide appropriate services for their children, and experts are training educators in how to best handle kids with the condition.
A Brighter Future
Considering that today's young Asperger's sufferers are the first generation of kids who are being diagnosed and treated from an early age, doctors are optimistic. There are, after all, adults with Asperger's who have had successful careers, often in computer or science-related fields. "I feel like we have one foot in the dark and one in the light," Laurajean says. "When we got our oldest son's diagnosis ten years ago, they wished us good luck but didn't know where to send us. With Robert, we were able to intervene early, and he is doing so much better socially." Like other parents of Asperger's children, Laurajean can only hope that she and the schools are giving her kids the tools, the confidence, and the support they'll need to face a future in a world they're struggling to understand.
Copyright © 2001 Lori Miller Kase. Reprinted with permission from the October 2001 issue of Parents Magazine.