Adam S. was clearly a bright little boy. He began reading at age 2, and as a preschooler would lecture friendly adults--actually, any adult who would listen--about state capitals or Presidents or famous painters. But something was wrong. Adam had no friends, no connection to his peers. By third grade he was adrift: isolated, troublesome and unhappy, despite his academic ability. A string of experts gave Adam a string of diagnoses: attention deficit disorder, nonverbal learning disorder and obsessive-compulsive disorder. Then three years ago, when he was 9, doctors reached a new diagnosis--Asperger's syndrome.
Adam's confusing mix of abilities and deficits and the confusion of those who tried to assess it are both typical for children with Asperger's, a condition that is generally considered a form of autism. While it remains little known, the number of diagnoses has soared since psychiatric authorities formally defined it five years ago. Dr. Marie Bristol-Power of the National Institute of Child Health and Mental Development said recent survey data suggest that under some definitions as many as 1 in 500 people have the condition, higher than the estimate for classic autism.
Hans Asperger, the Viennese pediatrician who first described the condition in 1944, called his patients "little professors" who use words as their lifeline to the world. Most Asperger's patients have average intelligence or above; 80 percent of autistic people, by contrast, suffer some degree of mental retardation.
The most striking characteristic of the syndrome is consuming interest in arcane subjects. Dr. Fred Volkmar, a psychiatrist with the Yale Child Study Center who helped write the standard diagnostic definition of Asperger's, has encountered obsessions with clocks; the Titanic; deep-fat fryers; lists of Congressional members, spouses and aides; refrigerators, and train, plane and bus schedules.
Everyone knows someone with an all-encompassing interest in something, said Dr. Volkmar, whose Child Study Center team last month held a conference on Asperger's, organized with the help of Aspen of America, a national advocacy organization. "But the key point in the diagnosis is that their obsessive behavior significantly impairs their social functioning," he said. Youngsters with the condition are unable to pick up on the nonverbal cues that underlie most interactions with others, but they are smart enough to come to realize, and regret, a gap they can cross only with extreme difficulty. As teen-agers they may experience what one expert called "extreme teasing." And while many adults manage to master enough social skills to attend college, find good jobs and even marry, others sink into isolation. Researchers report high levels of depression and suicide, and antidepressants are the most common medication given to Asperger's patients.
"We can learn to pretend to be normal," said Lianne Holliday Willey, a 39-year-old writer in Warrensburg, Mo., who describes herself as having "residual" Asperger's. "We just don't get the point of it the way you all do."
While Ms. Willey is unusual in one sense--Asperger's is largely a condition affecting males--she came to her diagnosis in 1997 the way many adults do, by having a child diagnosed with it. At a North Carolina conference on the subject for parents of children with Asperger's, Dr. Bristol-Power said, so many wives recognized their husbands in descriptions of the syndrome that they formed a support group for spouses.
One reason for the slow acceptance of Dr. Asperger's work is that writing in German in Vienna in 1944 was not a good way to spread an idea, Dr. Volkmar noted. His paper was first brought to wider attention in 1981 by a London psychiatrist, Dr. Lorna Wing, and only in 1994 was the syndrome included in the Diagnostic and Statistical Manual IV, the latest version of the mental health profession's guidebook.
Dr. Wing's shorthand for the condition was "active but odd," to distinguish it from the extreme self-absorption of classic autism. More recently, scientists have talked of an autistic spectrum, with Asperger's commonly being described as the span's "smart end." But to Dr. Volkmar and some other researchers, Asperger's appears more like a separate but related condition he would describe as autism's mirror image.
All of the autistic-like conditions that have come under an umbrella term of "empathic disorders"--to emphasize the stunted social skills that undermine the learning process--appear to be caused by lesions in a part of the brain that processes sensory input. In cases of classic autism, the difficulties are predominantly with the verbal skills handled by the brain's left hemisphere. In Asperger's the deficits are largely in nonverbal skills, connected to the right hemisphere, leading Dr. Volkmar to speculate that the syndrome The genetic link is also stronger in Asperger's than in autism: in more than one-third of the 800 cases studied at the Yale center, a family member identified at least one other relative as having similar traits.
Autism is usually diagnosed around age 3 but children with Asperger's are not usually identified until they start school and their social inabilities begin to stand out. That lag is unfortunate. Applied behavioral analysis, a type of intensive, one-on-one teaching that experts consider the most effective treatment for autism, is itself most effective in the preschool years, said Dr. Mary Jane Weiss, the director of the Rutgers University Autism Program. Also, Dr. Weiss said, because "their strengths obscure what their deficits are," Asperger's children typically receive less help.
Treatment is usually a mix of therapies to help with some patients' problems with motor skills and sound recognition combined with the most important kind of help, behavioral training focused on social skills, Dr. Weiss said.
Dr. Volkmar called the overall goal using the children's strengths--intelligence and verbal ability--to overcome their deficits. Judith Rivkin, the mother of a 9-year-old in Manhattan with Asperger's, Sam D., described the process as breaking down behavior that most people master without thinking into discrete fragments that can be memorized.
"There's been a lot of practicing what you could say, practicing taking the other person's point of view," Ms. Rivkin said. "Things like, 'Do I have to look him in the eye?' 'Yes, but just a little bit to let him know you're listening.' "
Adolescence is particularly hard for children with Asperger's. Many teachers find it hard to believe that a bright student who is disrupting class is not doing it on purpose, Dr. Volkmar said. Until recently, that often meant that students with Asperger's were put with aggressive students in special classes for troublemakers, a practice that he said amounted "to putting the perfect victims in with the perfect victimizers."
Adam S.'s mother, Lori, has dealt with the trauma of teasing both with her son and as president of Aspen Inc. (the name is short for Asperger's Syndrome Parents Education Network), a New Jersey group that offers support to parents in the New York metropolitan area. "Because our kids are so bright, they have a lot of self-awareness," she said. They're aware that the thing is to blend in, and that they don't--and that can lead to depression." This year, Adam's school district has assigned him a "shadow" aide, who helps guide him away from inappropriate behavior as well as keep him working smoothly in his mainstream classes. And his recent victory in his school's geography bee is the kind of positive side to his intense focus that his family and teachers can use to bolster his self-esteem. "I was very worried about his starting middle school," his mother said. "But it's turning out to be his best year." Even so, Adam sometimes comes home crying, frustrated by the chasm between him and his peers.
But children can be helped to connect. Ms. Rivkin said her son has "learned to have friends and to care about his friends." He recently gave a rundown on his classmates "all about how he likes her, but she doesn't like him, and how this one likes me," and wrapped it up by declaring "and that's the Love Report!" Still, even adults who have overcome the most isolating elements of Asperger's say they still struggle with the consequences of things like having a poor grasp of what to say--or not to say--when.
"Other people think we're quirky and cute," said Ms. Willey, who has published a memoir, "Pretending to Be Normal," and who describes her husband as "a bit of a loner" like herself. "Well, our quirkiness keeps us from getting jobs, from making friends, keeps us on antidepressants. We're screwed up."
Barbara Kirby, the creator of an Internet resource site for Asperger's called OASIS, said she gets messages regularly from adults who hear a description of the syndrome and think it matches them. But Dr. Bristol-Power cautioned that the label could easily be overapplied. "Where do you draw the line between a syndrome and diversity of personality types, which you want?" she asked.
Some adults with Asperger's are posing the same question. David Spicer, a North Carolina computer programmer who received an Asperger's diagnosis at the age of 46 in 1994, says he is often asked if he wishes he could be cured. "It's not as if there's my autism, and then there's me," he said. "I don't exist separate from my autism."
Ms. Willey's daughter with Asperger's, Meredith, 8, is well aware of the difficulties the condition imposes. But she sees another side as well. "When I find something I like, like horses and Shakespeare and Winnie the Pooh," she said, "I like them a whole lot more than other people like their things."
What to Look For
Asperger's syndrome can be difficult to diagnose in preschool children. But Dr. Ami Klin of the Yale Child Study Center recommends that parents seek help if they notice several of the following behaviors:
*A marked lack of interest in other children, or a consistently
inappropriate style of engaging others, like long monologues.
*Significant difficulty in understanding other children's feelings and expressions (inability to get jokes or teasing).
*Few facial or bodily gestures; speech that is pedantic in tone or vocabulary.
*Little make-believe and much repetition in play.
*Overreaction to minor changes in routine or environment.
*Precocious verbal skills and marked self-absorption in subjects unusual for the child's age.
These symptoms usually become more prominent in older children and therefore easier to spot. Clinicians also look for the combination of high intelligence and verbal skills, the absence of same-age friendships despite a desire to form them and the growth of highly circumscribed interests. Even so, every child is different, and many experts recommend a full-scale evaluation by a multidisciplinary center familiar with the syndrome.
Several sites offer information about Asperger's syndrome. These include:
*Aspen of America.
*Yale Child Study Center.