A Look at Asperger's Syndrome
With all the news about the rise in autism, you may have also heard about Asperger’s Syndrome. It’s a sub-type of autism spectrum disorder first identified 65 years ago. As with autism, the cause of Asperger’s is unknown, and it occurs more frequently in boys than in girls. We asked Lynn Kern Koegel, Ph.D., the clinical director of the Koegel Autism Center and director of the Eli and Edythe L. Broad Center for Asperger Research at the University of California, Santa Barbara, to explain what Asperger’s Syndrome is and how professionals are treating it.
Parent & Child: How does Asperger’s Syndrome differ from autism?
Lynn Kern Koegel: To have autism, a person has to have language delay, problems with social communication and interaction, and restricted interests. Children with Asperger’s have the social difficulties and the restricted interests, but they don’t have the language delay. So when they’re little, they’ll have their words and their sentences on time, but they won’t be playing with the same toys or even playing with toys in the same manner as typical children.
P&C: Asperger’s Syndrome was first identified in 1944. Have doctors diagnosed it ever since?
Koegel: It really didn’t get picked up until the early 1980s. I think part of the reason for that is the wrong notion that if kids don’t have behavior problems and just don’t socialize, there is no problem. If a child gets really good grades, everybody’s happy. But research shows that children who don’t socialize have major problems as adults.
P&C: How does the behavior of children with Asperger’s differ from that of typical children?
Koegel: Kids with Asperger’s may need to play a game a certain way that might not be the way the other children want to do it. They’re not always flexible with rules of games or activities. Sometimes they have difficulty with conversation. They don’t understand that if someone says, “I’m going to Disneyland this weekend,” you should say, “Who are you
going with?” They’ll just say, “Oh.” Question-asking skills seem to be low in kids with autism spectrum disorders.
P&C: Is there a way parents can distinguish between a child who is simply shy and has a strong interest in a topic and one who may have Asperger’s?
Koegel: There’s a range of socialization in typical kids, but children with Asperger’s are going to be way outside of the range, to the point where they’re isolating themselves. Most children ask for play dates by age 3 or 4, but children with Asperger’s won’t ask to have kids over. A lot of young children really like dinosaurs or construction equipment, but in children with Asperger’s, the interest is almost exclusive. They don’t want to talk about other things and they’ll figure out a way to get the conversation back to their area of interest.
P&C: At what age do Asperger’s symptoms typically reveal themselves?
Koegel: The symptoms are present at birth, but they may be missed. A lot of kids with Asperger’s are very bright, and they can carry on a wonderful conversation with adults, so a parent or teacher might assume there’s nothing amiss. But it’s important to watch how these children interact with peers. Children with Asperger’s won’t play with other kids, or even if they play a little bit, they’re not playing as much as their classmates.
P&C: If parents are concerned, whom should they seek help from and what kind of help is best?
Koegel: First, talk to your child’s pediatrician. He may recommend a specialist in autism spectrum disorders. You’ll probably need a referral to see the specialist. Behavioral interventions are best—that’s when somebody goes out with the child and actively teaches him how to interact socially with peers. The end goal is for the child to be able to make friends, and the only way he can do that is to get feedback on how he’s interacting.
P&C: Why is early intervention best?
Koegel: The older a child is, the more advanced the social skills are among peers. When they’re little, all they really have to do is learn to play with other kids—take turns, share, and so on. If adults are helping them in social situations, nobody really notices. As they get older, having a therapist there is a bit more stigmatizing.
P&C: Can kids improve if diagnosed with Asperger’s when they’re older?
Koegel: It’s never too late. Every child who gets intervention can improve. Kids with Asperger’s are smart. They can really understand. And the bulk of the kids are really motivated. They want to make friends, they just don’t know how.
P&C: Once a child receives an Asperger’s diagnosis, what’s the next step?
Koegel: It depends on the child’s age, but they generally can qualify for special education services at school. I recommend to all of my parents to make sure the bulk of the intervention is done with peers. If kids are little, it means the therapist spends quite a bit of time with the children with their peers, prompting them to engage in whatever social behaviors they’re missing.
P&C: How do you know your child is getting the right intervention?
Koegel: There are a couple things that are really important. One is that the programs that are being provided have data to back them. Now that the number of children with autism spectrum disorders is so high, every day there’s a new therapy, and honestly, half of them don’t have any positive effect at all. So make sure that the therapies are data-based, that they’ve been published and peer reviewed, and that they work with children your child’s age. The second thing is that the program has to be individualized. Some programs that work perfectly well with one child may not work that well with another. If you aren’t seeing your child playing any more frequently with the other kids, then that’s the wrong therapy to use.
P&C: Should parents be part of the treatment plan?
Koegel: I always recommend that parents make sure they’re an integral part of the intervention. If the therapist wants to exclude them from their child’s therapy, that’s a red flag, because a lot of socialization is going to be after school or on the weekends, so the parents need to be able to learn what behaviors to prompt and what kind of things to do in those situations.
P&C: Is there any research under way that may impact the way Asperger’s is treated in the future?
Koegel: There really aren’t any big breakthroughs coming out. If anyone tells you there is one strategy that’s going to cure your kid, take your wallet and run. Unfortunately, there are no medications that can help your child become more social. It’s really blood, sweat, and tears, and a lot of work with the child and a lot of different interventions at one time. Researchers don’t fully understand friendship, but we know that we can help our children develop friendships, whether they have a disability or not.
Every family’s experience rearing a child with Asperger’s Syndrome is bound to be different. These resources may provide common ground:
ADAM Romantic comedy (rated PG-13) depicts the relationship between a young professional with Asperger’s and the woman who moves into his building. The film’s website provides video clips with insight into the disorder: foxsearchlight.com/adam.
Pretending to be Normal by Liane Holliday Willey
Autobiography of an Asperger’s sufferer. Offers encouragement and hope.
Look Me in the Eye by John Elder Robison
Humorous (and painful) bestseller about growing up with Asperger’s.
All Cats Have Asperger’s Syndrome by Kathy Hoopmann
Playful look at the disorder that can help all kids understand it better.
My Friend with Autism: A Coloring Book
Written by a teacher for students ages 9 to 12.
Susan Hayes is a freelance writer who lives in Brooklyn, NY. She is the co-author of 7 Steps to Raising a Bilingual Child.