Autism and Asperger Syndrome (cont.)
Lou Schuler tells WebMD what it's like to have a child with Asperger 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 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 tells WebMD.
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," says Schuler. "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 Syndrome
Many adults with Asperger 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," says Baron-Cohen.
Indeed, relationships prove difficult for people with Asperger 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, says Baron-Cohen, 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," says Baron-Cohen. "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 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."
Published Oct. 25, 2004.
SOURCES: Bobby Newman, PhD, BCBA, president-elect, Association for Science in Autism Treatment; director, training and research, Association in Manhattan for Autistic Children (AMAC). Simon Baron-Cohen, co-director, Autism Research Centre, Cambridge, England. Lou Schuler, freelance writer; and author, Allentown, Penn.
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