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Issue date: July 18, 1999

Please understand my son

Josh, 9, has Asperger Syndrome, a neurological disorder you've probably never heard of. But as many as 2.5 million other Americans have it, too.

By Jeffrey Cohen


W

Asperger Syndrome is a condition of social disability. Here, Jeffrey Cohen embraces son Josh at their New Jersey home.

hen my son Josh was asked to leave his first nursery school eight years ago, I told myself he'd grow out of it. He won't.

Asperger Syndrome (AS) is similar to high-functioning autism. It is a neurological impairment Josh shares with as many as 2.5 million other Americans, most of whom don't know it exists.

You see it in social situations: When Joshskins his knee, something another 9-year-old would shake off, he cries. His style of play can be to tell another child what to do and get upset when the child refuses. When excited, he flaps his hands, jumps up and down, sings movie music and stares at the ceiling.

What is it?

If you think your child may have Asperger Syndrome (AS), see a pediatric neurologist. AS is different in each individual, so not every child has every symptom.

Symptoms include:

Fixating on one subject to the point of obsession (from train schedules to doorknobs).

Inability to understand idioms (example: "get your goat" is taken literally).

Avoiding eye contact.

Distractibility (ADD- and ADHD-type symptoms).

Low tolerance for frustration.

Acting too young
for one's age
(example:
a 12-year-old speaking
like a cartoon character).

Flat-toned speech.

Sensitivity to loud
noises.

Rigid dependence
on routine.

Some parents are reluctant to invite Josh to play with their children. Others think I'm an awful father because sometimes I physically force him to look at me to get his attention.

To a schoolmate, he may just appear weird: Josh clicks his tongue and recites TV commercials when he doesn't realize he's making sounds.

He's exasperating. He's also astonishingly creative: He wrote and filmed his own videos when he was 4. He is sweet-natured, funny, loving, fair-minded, smart and charming. He delights in other people and is a delight himself. Of course, I'm a little biased.

Josh has always been "mainstreamed" in public school classes. A good school year, like the one just ended, is defined by Josh not hitting other kids, not becoming frustrated when they tease him, not imagining a movie instead of doing math. This success is due largely to his teachers and the paraprofessional assigned to help Josh through his day.

AS is a condition of social disability. As with autism, patients usually avoid eye contact. They don't understand body language or idioms, and become confused if you say you're "pulling their leg." Why would you pull someone's leg? If you pulled my leg, how would I stand up?

They take things very literally, so sarcasm is lost on Josh, which is a major disadvantage in my family.

His emotional maturity runs behind his intelligence. His third-grade report cards were fine, but we worry that as he gets older, the frustration could overwhelm Josh, and his work could suffer.

My wife was the first to suspect AS in Josh, and researched the condition until a pediatric neurologist confirmed the diagnosis. We know there is no "cure," but symptoms can be addressed.

Since kindergarten, he has taken Ritalin to help him concentrate. He goes to occupational and speech therapy to learn social speech (unlike autistic children, AS kids usually speak very well) and to a social skills group run by a psychologist.

All his work is showing signs of progress. This year, Josh played with other kids at recess. He joined the Rabbit and Guinea Pig Club at school. For the first time, Josh is making friends, and learning - slowly - how to keep them. All his work helps him learn things other kids pick up naturally.

His victories are smaller but harder fought. They always will be, and just for the sheer number of them, you have to be proud of him.

PHOTO CREDIT: Jeff Zeleevansky for USA WEEKEND


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