April 4, 2007 — -- In recent years, Asperger's syndrome has gained notoriety as a rare, yet sometimes socially debilitating, syndrome.
But despite recent attention, many remain unaware of the true nature of this unusual disorder.
To find out more, we talked to two experts who study Asperger's and deal with children who have the disorder.
Wendy Stone is professor of pediatrics at the Vanderbilt Kennedy Center Treatment and Research Institute for Autism Spectrum Disorders, while Henry Roane is a specialist in the treatment of behaviors associated with autism and Asperger's at the Center for Autism Spectrum Disorders at the Munroe-Meyer Institute in Omaha, Neb.
Though its symptoms were first identified in 1944, Asperger's syndrome was not widely known until recently.
In short, the syndrome is a developmental disorder most often characterized by certain social deficiencies or "quirks." This often includes an unusual preoccupation with a particular subject, repetitive routines or rituals, peculiar speech patterns, and other behaviors that may make interacting with peers difficult.
"Basically, you get an individual who might have a real restricted repertoire of things they are interested in," Roane said, adding that those with Asperger's may attempt to engage in conversations with others that focus only on their particular area of interest to the exclusion of all other topics.
However, what separates this disorder from many others is the fact that in most cases, those with Asperger's have normal, or even above normal, intelligence.
For this and other reasons, the underpinnings of Asperger's remain a puzzle to researchers.
"Right now, the cause is largely unknown," Roane said.
But though the exact causes of Asperger's remain a mystery, studies suggest a genetic component to the disorder. Researchers are trying to determine the gene or genes responsible, and current evidence suggests that structural abnormalities in areas of the brain that control interaction and behavior may be to blame.
The signs of Asperger's usually manifest by the time of a child's third birthday, though some children may exhibit symptoms as early as infancy. While children with Asperger's retain their early language skills, certain delays in motor development -- such as clumsiness or late commencement of crawling or walking -- are often the first signs of the disorder.
Conservative estimates put the prevalence of Asperger's at two out of every 10,000 children, and researchers have found that boys are three to four times more likely than girls to have the condition.
Interestingly, though the syndrome is most often diagnosed in children, a growing number of adults who seek medical help for depression and other mental health conditions are being diagnosed with Asperger's.
Despite the uncertainty surrounding the underlying causes of the disorder, the effects that Asperger's can have on its young sufferers is no mystery.
"It is really hard for any child, who looks like other children but acts a little differently, to find their place in this world," Stone said. "That's what children with Asperger's face on a daily basis."
Common problems that confront children with Asperger's include social isolation and ridicule by their peers. Worse, these problems persist into adolescence and adulthood in many cases.
"Not every person with Asperger's has a miserable childhood," Stone said. "But when you're smart enough to know the difference between you and other children, and when you're sensitive enough to be hurt by teasing, and acutely aware of the differences in the relationships that other kids are having that you can't, it can be very painful."
The mysterious nature of Asperger's has led to a number of misconceptions about this syndrome -- as well as the individuals who have it.
"Overall, it has been a very misunderstood disorder, especially when it comes to distinguishing it from higher levels of autism," Stone said.
Roane agrees. "A lot of people talk about Asperger's and compare it to autism, and a lot of people characterize it as a higher form of autism," he said. "But this is not completely accurate."
In general, he said, those with Asperger's are not as impaired as a person with autism.
"Because of this, they are able to go to college, balance a checkbook, drive a car and function pretty normally. In many cases, it's just somebody who's socially awkward."
Even this awkwardness can be misconstrued as "acting out," Stone noted.
"One misconception is that they are intentionally acting weird for attention, which is not the case," she said. "A lot of attributions are made about their behaviors that are negative, because people just don't understand."
Just as there are many misconceptions about those who actually have Asperger's, recent attention of the disorder has also led to misdiagnoses of those who do not have the syndrome.
"It is very misdiagnosed, and a lot of people without Asperger's get a diagnosis of Asperger's," Stone said.
"Somebody might be really socially weird -- for example, really into 'Star Trek' or dragons," Roane noted. "This does not mean that they have Asperger's.
"The point is that you can't really just make that generalization."
As there is no known "cure" for Asperger's, most interventions aim at developing the social skills of those with the disorder.
"One of the biggest things we have to work on is social skills deficits," Roane said. "There are a lot of different curricula out there to teach people with Asperger's how to deal with different social mores."
He adds that certain medications are also used to help with the depression and anxiety that often come with the disorder.
When treating children with Asperger's, doctors often need to design a highly individualized "package" of care, so treatment regimens vary greatly from one person to the next. However, most professionals agree that the earlier the intervention, the better.
As Asperger's syndrome gains both attention and needed funding, researchers are expanding their search into why Asperger's occurs, and what might be done to prevent it.
However, Roane said that finding new and better treatment regimens must also be a priority.
"A big area of interest is to look into the causes. If you think of it, that's what most of the research is looking into," he said. "But finding a cause does not necessarily lead into treatment for the thousands of children who already have it.
"I think that kind of individual treatment is really a critical need, along with finding Asperger's genetic causes."
And as research provides treatment professionals with a deeper understanding of Asperger's, many are hopeful that those who suffer from the syndrome can have a better chance at leading a normal and fruitful life.
"There are lots of ways to intervene to make life at school and at home not just more bearable, but also rich, for children with Asperger's," Stone said.