Sunday, June 20, 2004

Autism diagnosis on rise

Doctors say odd behavior in many kids, adults is more than a quirk

By Karen Gutierrez
Enquirer staff writer

When Patrick Kelty (left), 14, was diagnosed with autism at the age of six, his mother, Dena Gassner (right) recognized similar traits in herself.
Dena Gassner finally understands why people don't like her. It's autism, she says.

A mild form of the brain disorder has caused her to lose 18 jobs over 10 years, she says. She cannot make small talk or read people's body language. And she goes on and on about a single, narrow topic: her own malady. To share facts about it, she has cornered people at parties and in grocery stores, oblivious to their squirming.

Gassner says finding a medical explanation for her lifelong oddness has been a relief. But the diagnosis also puts her at the center of a national debate. As autism cases increase across the country, some experts say a legitimate disorder is being hijacked as an excuse for other ills, including simple rudeness.

One skeptic says, "I think people now use the label of Asperger's Syndrome, (a type of mild autism), to justify socially inappropriate behavior," says Max Wiznitzer.

He is an associate professor of pediatrics and neurology at Case Western Reserve University in Cleveland.

At the same time, though, he sees many patients who definitely have it, he says.

This autism-related disorder was first identified in 1944 by Hans Asperger, an Austrian pediatrician. It was added to the U.S. diagnostic manual for mental disorders in 1994.

Some people may have certain characteristics of Asperger's, but correct diagnosis requires them to meet criteria that include:

• Impaired social interaction.

For example, they may be unable to use proper eye contact or body language to make connections with others. They may be unable to share emotions or develop appropriate peer relationships for their age level.

• Restricted interests or patterns of behavior.

Examples: They are abnormally focused on a subject that is not of general interest. They strictly follow routines that have no functional purpose. They are preoccupied with parts of objects.

• No significant age delay in the development of language, cognitive or self-help skills other than social interaction.

Source: Diagnostic and Statistical Manual of Mental Disorders (DSM IV)

In its most severe form, autism shuts people off from the world. Those with milder variations, including Asperger's, have poor social and communication skills and a laser-like fascination with subjects that don't interest their peers. For example, one of Wiznitzer's clients knows every conceivable fact about manhole covers.

No one can say exactly how many Americans are affected. But studies in two cities indicate three to six children per 1,000 have autistic disorders. Over the last five years, the number of such youngsters receiving special services in public schools has increased 119 percent, federal records show.

Doctors are getting better at recognizing symptoms, and genuine cases of autism are clearly on the rise. But as awareness grows, so does the number of people seeking a "sexy diagnosis," says Dr. Patricia Manning-Courtney, director of the Kelly O'Leary Center for Pervasive Developmental Disorders at Cincinnati Children's Hospital Medical Center.

To parents with troubled children, Asperger's can sound more appealing than problems such as mental illness, retardation or family dysfunction, she says. About five times a week, people come to Children's Hospital asking whether their kids have Asperger's, Manning-Courtney says.

Evaluations indicate that up to half of them don't.

Proper diagnosis of autism is even more difficult with adults. Most research has focused on children, so the tools for detecting mild cases in grown-ups are less precise.

"We're going to dilute the value of this diagnosis if we give it to everybody and their brother," Manning-Courtney says. "I'm very fearful of that trend, and actually there's nothing we can do about it. It's going to be over-used."

Trying to be normal

Gassner, 45, resents the notion that some people are just quirky or rude. Such attitudes trivialize their suffering, she says.

Gassner grew up in Northern Kentucky and now lives in Edgewood. She writes well, speaks articulately and has a master's degree in social work. For years, she was expected to fit in but couldn't, she says. She tried medications for other ailments - depression, attention deficit disorder - but they only made her feel worse.

"The family talked about it for years, saying, 'I don't know what's going on with her. She's got to get her act together,' " says Gassner's brother, Dan Newman of Cincinnati.

The breakthrough came three years ago, when Gassner found a specialist in Bloomington, Ind., who diagnosed her with pervasive developmental disorder. It's a catchall term sometimes used interchangeably with Asperger's.

After the diagnosis, "I stopped trying to be normal," Gassner says. "What's changed is, I know myself. I'm not fragmented anymore."

Now she speaks about her experiences at autism conferences. Her success shows autistic people can make good use of their expertise in a particular subject, she says.

The potential for over-diagnosing the disorder doesn't trouble Brenda Smith Myles, an associate professor of special education at the University of Kansas. Over time, diagnostic tools will improve and that problem will be corrected, she says. What's clear is that, regardless of the labels they do or do not receive, people like Gassner need help, she says.

Confused by social rules

The stories abound.

One man with Asperger's spent his first semester in college eating out of vending machines, because he didn't realize there was an alternative, Myles says. Another has a doctorate in geology but works as a part-time book shelver at a library, because he keeps losing other jobs.

People with Asperger's typically do not understand unwritten social rules, experts say. They also are locked into literal interpretations of language.

"If you were to tell somebody with Asperger's, 'Gee, it would be nice if somebody took out the trash,' they're not going to get that social cue. They might just agree that would be nice," says David Beversdorf, an assistant professor of cognitive neurology at Ohio State University.

Gassner says she has suffered with such disconnections since childhood.

She can't tell when people are trying to cut off contact. She can't be diplomatic. Growing up, she would clumsily insert herself into conversations, as if always trying to one-up the speaker, says Newman, her brother.

Gassner married and had two children. But she found herself frequently losing jobs, in part because she never knew when to withhold an opinion.

When her son, Patrick, was diagnosed with autism at the age of six, she recognized similar traits in herself. Two years of searching led her to the specialist in Bloomington.

Helping themselves

Even when they have a diagnosis, few treatments or public services are available for adults with high-functioning autism. So some "Aspies," as they call themselves, are using their newfound insights to help one another.

A national support group and several annual conferences now address practical issues, such as how to speak to a boss, what to wear on casual Fridays and how to get a date without being accused of stalking.

Gassner has pursued her own strategies. She wears specially tinted glasses that help protect her nervous system from over-stimulation caused by certain lights and colors, she says. She honors her need for predictable routine. And she has taught herself to wait until people ask, "What do you do?" before unleashing autism stories.

Gassner has been married for seven years to her second husband, Rick Gassner, an aircraft maintenance supervisor at Delta Airlines. He was drawn to her intelligence and articulation, he says, and he still is.

Sometimes, though, he can't help cringing when she starts on her favorite subject.

Mrs. Gassner has told strangers that they or their children might be autistic. During a recent interview, she also speculated that the entertainer Rosie O'Donnell has the disorder. She even joked that the Gassner family dog, Teddy, is autistic in the way she paws through her food bowl, apparently trying to separate the Kibbles from the Bits.

Gassner knows that she directs most conversation this way.

"I jokingly say I try to convert people to autism, because I know they're out there," she says.


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