Kid's Stuff
Bright but shunned: Talented, quirky children struggle with a form of autism called Asperger's
By ANNE WILLIAMS (March 02)
The Register-Guard

YOU REMEMBER THAT kid from school - the one who was obviously smart, but painfully awkward, stunningly unathletic, profoundly weird?

Other children could sniff out his vulnerability in a heartbeat, making him the favorite object of ceaseless teasing and cruel jokes. They could always count on a satisfying reaction.

Nan Lester calls her son Max her hero. "He has a depth of character that I don't see in typical people," Lester says. "If you've ever known someone who has to come up against terrible adversity, there's this strength of character. That's what I see in my son."

On a typical day at school, Max ricochets between moments of attentiveness, quiet "breaks" on a rocking chair where he thumbs through books, and near-meltdowns. Not going into sensory overload is a constant challenge for the estimated one in 300 to 500 children, four out of five of them boys, who are affected by the neurological disorder. Photos: NICOLE DeVITO The Register-Guard

You may not have thought about it much at the time, but school for that kid must have been an unending chamber of horrors.

Maybe you wrote him off as a geeky eccentric, no good at life outside his own head. What no one guessed then was that he may well have suffered from a perplexing neurological disorder called Asperger's syndrome.

Asperger's, sometimes dubbed "the little professor syndrome," is a mild form of autism with a curious medley of characteristics: narrow, sometimes obsessive, interest in particular subjects; average to sky-high intelligence; verbal adroitness; difficulty coping with change; clumsiness; unusual sensory perceptions; and - most evident to peers - striking social ineptitude. The vast majority of sufferers are boys.

In 1944, Austrian physician Hans Asperger first described the syndrome that carries his name, but it wasn't until 1994 that Asperger's made it into the official diagnostic manual of the American Psychiatric Association.

Even just five years ago, the vast majority of educators didn't have a clue what was going on with these idiosyncratic children, whose crossed wiring can lead to severe behavioral problems, academic failure and depression. Nor did they know how to help them.

That's rapidly changing. In the past couple of years, there's been a veritable explosion of books, media stories and seminars on Asperger's - so much that it risks becoming a "diagnosis du jour."

And here in Lane County, a newly formed and fiercely committed group of parents is working on overdrive to make sure local educators understand the disorder and do what's needed to protect and teach their kids.

But it's no easy task. While its profile is growing exponentially, Asperger's syndrome is still an emerging, complex, often controversial diagnosis - one on which experts don't always agree.

A grandson's diagnosis

Tani Proctor sees the characteristics of Asperger's syndrome in her 8-year-old grandson, Levi, who attends Fairfield Elementary School.

Tani Proctor went to her first meeting of the Asperger Advocacy Coalition last month, and it took her breath away. So much of what she heard reminded her of sweet Levi, the apple of her eye, her cute-as-a-button, 8-year-old grandson, who's been banned from the school bus because he insists on shedding his clothing.

Proctor, 54, adopted Levi as an infant after her daughter, who was then battling drug addiction, lost him to the state foster care system. Problems surfaced early. A sudden loud noise would make him shriek and tremble. Behavior problems constantly flared up with baby sitters and at school.

Over the years, as she struggled to learn the source of Levi's anxiety, she occasionally heard Asperger's mentioned. While evaluations found autistic behaviors, they were never pronounced enough for a full-fledged diagnosis. Then in March, a local psychiatrist pinpointed Asperger's.

Levi exhibits many of the behaviors associated with Asperger's. He's so sensitive to the feel of shoes and certain shirts, for example, that he can't bear to keep them on when he's in stressful situations - like riding the school bus. "Last summer we lost six pairs of shoes," said Proctor, a receptionist at a medical clinic.

Levi is identified as Talented and Gifted at his school, Fairfield Elementary, and Proctor remembers him reading a nursing manual at 5. He can talk incessantly about a subject he's interested in, oblivious to the unspoken social cues a weary listener may be communicating. He talks too much, touches too much and simply has no idea how to play with other kids.

"The thing I would like people to know about this is that the social isolation of these kids is absolutely heartbreaking," Proctor said recently at the manufactured home she shares with Levi and her fiance, Glen Steger, in the Bethel neighborhood. "I can't even talk about it without breaking down."

Levi desperately wants friends but is consistently rejected by his peers. And it's gone beyond that. During the past few years, kids have locked him in a parcel post box, burned his books and bashed him on the head with a bicycle helmet, to name just a few indignities.

On Halloween, some neighborhood kids knocked on the door. Levi was thrilled, Proctor recalls, and ran to greet them, agog over their super-hero costumes.

"And they said, `Oh, God, it's Levi's house - we're out of here,' " Proctor said, her eyes filling with tears. "The look on his face ... He was just devastated."

The Bethel School District hasn't identified Levi as autistic, and he doesn't have an Individualized Education Program (IEP) - a federally mandated plan outlining the learning modifications and needs of a child who qualifies for special education services. Under federal law, all children are entitled to a "free and appropriate" public education, and an IEP is meant to ensure that happens.

Proctor is certain the psychiatrist got it right, and she'll push for another evaluation.

"I'm finding out I have rights I didn't know I had," Proctor said.

The misunderstood malady

Empowering parents to prod schools was one of Nan Lester's chief aims when she launched the Asperger coalition last March. Her 8-year-old son, Max, was diagnosed with Asperger's last year. She's urged the staff at his school to learn about the disorder and implement a suitable educational plan. Despite disagreements, she is reasonably satisfied with the response.

"(Asperger's) is a completely different animal," Lester said. "People are starting to get that."

While they may be bright and talented, kids with Asperger's - like kids with any disability, be it a hearing impairment or severe autism - often need a lot of special help and attention. Too often, experts say, schools misunderstand or disregard those needs, sometimes with devastating consequences.

For example, because they are prone to outbursts born of frustration, these children are often lumped in with kids with behavioral problems - a potentially explosive mix.

"Their verbal skills are very strong, but often the problem is their other skills, especially their social skills, are horribly, horribly delayed," said Dr. Fred Volkmar, a Yale University School of Medicine professor who co-wrote the diagnostic definition of Asperger's in 1994. "Teachers see the inappropriate behavior, so they'll put them in a class with really bad boys, which is really putting the perfect victim in with the perfect victimizers."

Volkmar said he was initially skeptical of whether Asperger's syndrome was sufficiently distinct to qualify as a separate disorder, but his research has made him a believer. He questions whether it's as common as some believe, though.

"I think if you're talking strict diagnosis, it's one in 5,000 to 10,000," he said. "If you're talking loosey-goosey, one in 500. So the truth is somewhere out there, between those two."

Dr. Brenda Myles, an associate professor at the University of Kansas Department of Special Education, disagrees. She thinks the numbers could be as high as one in 200.

"I think there is a danger of over-diagnosis, but at this point we are so under-diagnosed that I'm not concerned about that," said Myles, who has written and lectured extensively on the subject. "I think probably over the next five years, we're going to be hearing more about Asperger's than autism."

Peer, teacher reactions

As soon as Lester placed an ad for the coalition in the newspaper last February, the calls began to pour in.

"Each phone call was at least an hour, and every one was filled with pain," she recalled. Now she has about 50 families on the mailing list, and it's growing fast.

At last month's meeting, and in subsequent interviews with coalition parents and kids, similar themes emerged: Persistent behavior and discipline problems, often unleashed by an unexpected change or sensory overload and misunderstood by school administrators; run-ins with other kids; severe depression, especially once kids hit middle school.

Linda Cochrane, a single mother, has a 16-year-old son with Asperger's. He can't bear to hear swear words, she says, and when he does, he'll often count to four as a way to "cancel" it out and defuse his anger. A handful of kids at his Eugene high school delight in trying to set him off.

"They're very good at knowing when to do it, how quietly to do it and how not to get noticed doing it," she said.

While the disorder may elude or even charm adults, kids zero in on it right away, said Rich Coolman, a diagnostic pediatrician at the Child Development and Rehabilitation Center who works with children with Asperger's and other disabilities.

"They pick them out in a second as odd and easy targets," he said.

Coolman also has a 15-year-old son who was diagnosed with Asperger's last year. He feels a little awkward that the diagnosis was so long in coming, given his own profession, but such is the subtle and slippery nature of Asperger's. His son, who was constantly locking horns with teachers through school, had previously been diagnosed with Attention Deficit Hyperactivity Disorder. Now that he's on an IEP, he's doing better.

Because they worry their kids will be further ostracized, both Coolman and Cochrane asked that their sons' names and schools be withheld from this article.

"(Teachers) find these kids odd and quirky and fascinating," Coolman said. "Then about a month into the term, they start seeing them as willful and manipulative."

Nothing could be further from the truth, Coolman said. "They're not plotting ahead," he said. "They're in a constant reactive mode to what's happening around them. They're basically innocent souls, just trying to deal with the world around them."

Parents acknowledge the difficulties schools face, especially given current fiscal realities. An increase in the number and percentage of special education students was one of the reasons the Eugene district had to cut $3 million from its budget this year.

But that doesn't let schools off the hook, parents insist. Some of them are so frustrated they're thinking of pulling their kids and home-schooling them, particularly once they reach middle-school age.

Educational modifications

During the past few months, Bob Cattoche, the Eugene School District's special education administrator, has gotten an earful about Asperger's syndrome. Partly because of parental concerns, but also because the district has seen a staggering rise in the number of kids with autism, he's pulled together a loosely organized "autism team," consisting of special education administrators and teachers, occupational and speech therapists and autism specialists. Ten of them traveled to Portland in October to a conference on Asperger's, with Dr. Myles as the keynote speaker.

"I'm beginning to understand kids with Asperger's have some pretty unique needs," said Cattoche, who has earned guarded praise from coalition parents for his efforts thus far. The Eugene district has 140 kids identified with autism, including those with Asperger's. Cattoche doesn't know how many have Asperger's, but said he plans to survey schools to find out.

One fact experts do agree on is that every child with Asperger's is thoroughly unique. Nonetheless, Myles believes there are certain educational modifications that generally work well. For example, kids with Asperger's don't like surprises, so schools should try to shield them from pop quizzes or last-minute assemblies.

These kids should also have a "home base," she said - a quiet nook where they can go when they're anxious, perhaps in a counselor's office or library.

"This must be nonpunitive," she said. "This is not a time-out, a negative. This is positive."

Social skills training is critical, she said. Many children with Asperger's have trouble reading facial expressions, telling white lies, holding a reciprocal conversation or respecting personal space. But those things can be learned, she said.

Myles believes that, with the necessary accommodations, many kids with Asperger's can spend most if not all of their time in the regular classroom, although some benefit from classes designed specifically for kids like them.

The Seattle School District won the hearts of Asperger's families when it launched magnet programs at four elementaries and one middle school targeting kids with Asperger's and other forms of high-functioning autism. The kids divide their time between mainstream and specialized classes. Cattoche and members of his autism team plan a trip up there next month.

In Lane County, Springfield is the only school district with something similar in place. Located at Maple Elementary School, the class - new this year - serves eight children in grades 1, 2 and 3, and incorporates many of the techniques Myles recommends.

On a recent morning, the children got a group lesson in reciprocal conversation. Cheryl Lockard, a speech and language pathologist who regularly visits the classroom, would bring up a topic and the kids took turns telling something about it.

"Talking about the same things is called making sense," Lockard told them. "If someone is talking to you about what they had for lunch, and I'm talking about my math homework, are we talking about the same thing? No, we're not."

A comfortable space

While it's safe to say socializing is difficult for all kids with Asperger's, often they manage to find a niche. For some, it's the chess club or computer club.

For 13-year-old Clark Wozich, it's theater. A seventh-grader at Pleasant Hill Junior High, Clark is playing roles in two productions at a community youth theater.

Clark was diagnosed in October, but his mother, Roberta Brown, said they knew before then. His school experiences have been "spotty," she said, but things are going reasonably well this year.

Other kids tell him he talks too much, but he hasn't been taunted too much lately, he said. "They usually say, `Shut up,' " said Clark, a handsome, muscular boy. "That's the one thing I hear a lot."

Clark is crazy for film - he hopes to become a director one day - and has a zillion adventure movie plots in his head. In a recent interview, he launched into them, rapid-fire, only to catch himself a few minutes later.

"Can we get back to Asperger's syndrome?" he asked. "I don't want this to be the story of my life."

Clark is eager for other people to learn about the disorder - and to appreciate the special qualities it imparts. "I think Asperger's syndrome is a gift, even though at some points it is difficult," he said. "People with Asperger's are just the same as everybody else, even if they're better at some things."

RESOURCES

The Asperger Advocacy Coalition meets the second Tuesday of every month at 7 p.m. at Autism Training & Support Inc., 1355-B River Road, Eugene, OR. For information or to be added to their mailing list, call Nan Lester at 345-3467.

Autism Society of America, www.autism-society.org

Autism Society of Oregon, www.oregonautism.com