You might remember Dustin Hoffman's powerful portrayal of an adult with autism in the movie Rain Man. Even if he gave you some idea of what it's like to be autistic, you probably have never heard about the many forms autism takes -- or about Asperger's syndrome (AS), one of two main types of autism that often goes unrecognized until late in childhood, or is even missed through adulthood.
Like with classic autism, children with Asperger's syndrome -- which is getting recognized more frequently later in life now -- often find themselves disconnected from others, seemingly in their own world. While researchers have yet to understand what causes AS, there is likely a genetic component. Some folks with Asperger's syndrome obsess over unusual things, and communication can be a great challenge. People with Asperger's syndrome are at times especially talented in a certain area, even brilliant, but that's not typical. "It depends who you talk to, but it's a fairly low number of cases," says Bobby Newman, PhD, BCBA, the president-elect for the Association for the Science in Autism Treatment (ASAT).
Asperger's syndrome is less about having extraordinary talents, and more about having difficulties with three main areas that Newman says are required for you to get diagnosed with any form of autism: socialization, communication, and behavior range. The symptoms of autism would also have to be present, even if missed, within the first 3 years of life, according to the diagnostic manual.
What Makes Asperger's Syndrome Different
There are two main differences between classic autism and Asperger's syndrome, according to Simon Baron-Cohen, the co-director of the Autism Research Centre in Cambridge, England. First, folks with autism tend to have a language delay or start talking later in life, and they also have a below average IQ. People with Asperger's syndrome tend to have an average or above average IQ, and they start speaking within the expected age range.
"I think depression may be more of a problem with AS. People with classic autism may be much more focused on their own private world, and unaware of what they are missing out on," Baron-Cohen says. People with Asperger's syndrome might be more aware of what they are not achieving socially.
There are about nine males with Asperger's syndrome for every one female with the disorder. As a result, Baron-Cohen and colleagues are conducting ongoing research about the potential connection between fetal testosterone levels and Asperger's syndrome. "There are a whole set of factors that suggest that this hormone might play a role in AS," he says. Yet if what has been referred to as "excessive maleness" pans out, there will be many unanswered ethical questions regarding just how the findings could impact the treatment and diagnoses of people with autism.
How would fetal hormone testing be used if parents could find out ahead of time about the possibility of Asperger's syndrome, and might parents consider the termination of a pregnancy based only on this indeterminate possibility?
"I'd certainly be very concerned if the test was used in that way," Baron-Cohen says. "Autism isn't necessarily a condition where quality of life is in any way decreased, especially when it comes to AS. These individuals -- if they are given the right support -- can lead a very valuable life."
Researchers can only speculate for now about how this link, if proven, might impact future treatments. "Some people think we might be able to intervene at the hormonal level," Baron-Cohen says, "by changing the hormones in the womb, but again this is ethically very complex." After all, a lot of people with AS want to be better understood and accepted by others, not treated or cured. "AS is not just a disability. People with AS might have an unusual memory for detail or an ability to focus on things for hours and hours," he says regarding the many positive and at times puzzling aspects of this condition.
Treatment and Diagnosis
One of the most important things to remember when talking about Asperger's syndrome is how different each case is, Newman says. "To hear that a person is autistic really gives you next to no information. The person's language abilities, their ability to interact with others, their behavioral patterns all vary greatly."
Treatment typically involves behavior modification and therapy, and sometimes medications for other co-existing mental health conditions. "The best treatment that is available is something called applied behavior analysis," Newman says. "The New York State Department of Health did a test for analyzing all of the available treatments, and they came to the conclusion that this is really the only form of treatment that had peer-reviewed data to strongly support its effectiveness."
Lou Schuler tells WebMD what it's like to have a child with Asperger's syndrome; his son Harrison was diagnosed with the condition when he was 6 years old. "I don't think it will ever be that you get one cookie cutter treatment that works for everyone," he says, and perhaps this is true of all children facing difficulties.
Meanwhile, many kids with Asperger's syndrome survive childhood despite never getting diagnosed or treated for it. Given how expensive and extensive the proven treatment services are, without a proper diagnosis Schuler says no one -- except folks that are extremely wealthy -- could afford the services.
"I don't think there is a downside to getting diagnosed or labeled," Schuler says. "One of the more destructive things you can do is pretend your kid can be educated and cared for the same way kids without these special needs are." If you ignore or deny problems, your kids might not get the attention or services they need. "That is virtually a guarantee that they will not only be different, but they will be unhappy -- maybe even tragically so," Schuler says.
Newman has observed a very different problem. "I find that many parents very strongly believe that something is amiss, and they are told by their pediatrician, 'No, everything is fine, you're being nervous. Give it another six months,'" he says.
Unfortunately, experts do agree that time is the key to making progress with AS, and it's important parents pay attention. "The first thing you look for is if your kid is more deeply interested in himself -- the main thing is that they don't engage in the world like others do," Schuler says. "They are intelligent but can't carry on a social conversation or interaction."
Newman says that with intensive treatment the possibilities are very good for tremendous progress to be seen. "Without treatment, most people unfortunately do require tremendous help throughout their lives just to function in everyday life. With early intensive intervention, however, the outlook may be much brighter."
Growing Older With Asperger's Syndrome
Many adults with Asperger's syndrome are successful academically, and move on to jobs. "Where they tend to be held back is on the social side in terms of relationships. Many of them are very lonely and suffer from depression because they can't make friends," Baron-Cohen says.
Indeed, relationships prove difficult for people with Asperger's syndrome, and divorce is more likely as well. These patients might also find themselves limited in their careers; some of them don't advance at work, Baron-Cohen says, because of a lack of people skills or difficulty with managerial responsibilities. But that doesn't mean that people with AS don't have the same desires as everyone else. "The desires are the same in terms of wanting a close relationship, and some people with AS do manage relationships," Baron-Cohen says. "It's about if they can meet a partner who accepts how they are different."
That is likely one of the largest challenges -- the fact that people with this problem are often so misunderstood by other people. Finding support for parents, children, and adults with AS is extremely important. Schuler says networking with other parents has improved life for his family -- something other parents often take for granted. "When you join support groups, and find a community of people with similar issues, you look out for each other. You discuss everything from what rights you have in certain districts to how to find babysitters."
With new research the future may bring more valuable treatments and a greater understanding of Asperger's syndrome. While kids and adults with the condition may find it difficult to connect, parents will likely find the opposite to be true. "One good thing about Asperger's is that you will always be in touch with your kid's teachers and administrators," Schuler says, of being well connected to the people in his son's life. "You don't just put your kid on a bus and send them off to get educated. You can't possibly be disconnected from your kids and their education when they have AS."