Young adults with Asperger's syndrome working on people skills

By: RUTH MARVIN WEBSTER - Staff Writer | Saturday, February 16, 2008 7:39 PM PST ∞

Watch and listen closely to the group of young adults playing miniature golf at Boomer's in Vista, and it becomes clear their conversation is not unlike their golf game: Comments bounce randomly about, unanswered and unacknowledged, the way their brightly colored golf balls ping off the AstroTurf bumpers.

These 20something golfers are part of a new group started on the Meetup Web site by Escondido resident Lisa James and her daughter, Wendy Walker, for young adults with Asperger's syndrome, a high-functioning form of autism that is often manifested in odd, eccentric behaviors.

Walker, 24, is lining up her putt on the third hole when Zane Hunker, 18, bounds onto the green with a blow-up alligator he's just won at the arcade. He hands it to Walker. She seems perplexed as to what exactly to do with it and doesn't smile. Finally, she looks up to the sky for a moment, thanks him shyly and goes back to her putt.

In Walker's group, not many golf balls are hitting the hole, at least not initially. But no one is keeping score, so it doesn't really matter.

Little understood
Asperger's syndrome is a neurobiological disorder named for Viennese physician Hans Asperger, who published a paper in 1944 describing a pattern of behavior in several young boys who had normal intelligence and language development, but who exhibited autisticlike behavior.

According to the Yale Developmental Disabilities Clinic Web site, typical features of the little-understood disorder include difficulties expressing empathy, robotic speech patterns, conversations almost always revolving around self, intense absorption or obsession in certain topics, odd mannerisms and clumsy body movements.

Though there is some discussion as to exactly how to classify Asperger's, it is part of a group of diagnoses called autistic spectrum disorders, said Laura Schreibman, professor of psychology at UC San Diego and the director of the university's Autism Research Program. "Autistic spectrum" refers to a range of developmental disabilities that include autism as well as other disorders with similar characteristics. Because symptoms can appear in different combinations and in varying degrees, two people with the same diagnosis can exhibit a wide range of skills and abilities.

While there is no cure, many Aspies ---- as they often call themselves ---- can be taught social cues, such as how to better read others' body language and facial expressions, and how to take turns talking.

Social gathering
That's one reason for the meetup group, said James, who never knew her biological mother but suspects she also had Asperger's. She didn't want it to be a support group for parents, but a group where young people with Asperger's syndrome could meet others like themselves, and just get out, socialize and have fun together.

"I hope that next time we pick an activity that doesn't showcase our lack of manual dexterity," commented Lowell Stearn, 28. He works from his Vista home as a copyright consultant and shares an apartment with Adam Saks, who also has Asperger's and was at the golf outing.

The group met again at the Wild Animal Park last Saturday, and on Thursday, they organized an Un-Valentine's party at James' home in Del Dios.

"Wendy suggested watching 'Terminator vs. Predator,' and we're going to eat snacks that are not shaped in hearts and pink," said James. She said she and Walker liked the idea of a small personal rebellion "against the greeting card, flower and candy industries which have succeeded in making anyone without a valentine feel like a loser."

'I can't read you'
The exact number of those with Asperger's is not known, but the National Institutes of Health has estimated that about 400,000 people in this country may be affected by it. Also alarming is that the numbers seem to be increasing, though most experts say that is due to improved diagnosis.

Asperger's was made a separate diagnosis in 1994, when it was included in the Diagnostic and Statistical Manual of Mental Disorders. Most of the young adults at the meetup grew up in a time when few doctors and educators knew about the syndrome and didn't recognize their symptoms.

"We took her to psychiatrists," said James of her daughter, "but that was in the late '80s and early '90s, and no one knew anything about Asperger's then."

Before Asperger's was made a separate diagnosis, Schreibman explained, people with Asperger's were seen as "just a little odd and eccentric, socially disinterested and, often, a little compulsive." The science behind the disorder is still in its early stages, she said.

"They have difficulty recognizing emotions and picking up on social cues," Schreibman said, noting that someone with Asperger's might, for example, talk incessantly about "Star Trek."

"They don't pick up on other people's expressions that they are bored hearing about 'Star Trek,' so they keep talking and talking. Later, they will often say things like they 'can't understand what other people's expressions mean,' or 'I can't read your face.'"

Stearn said it's difficult for those with Asperger's "to meet people because we usually don't play well in groups. We speak a different language."

He said he has no trouble recognizing his fellow Aspies, though, from the way they carry themselves. He said he even approached Walker years ago at a Borders bookstore because he suspected that she, too, had Asperger's. But they didn't meet again until recently, when the meetup group was organized.

Awareness on rise
James says that bringing awareness to this little-known form of autism was another reason to form the social group. But awareness has also been increasing because celebrities have brought it into the spotlight lately.

John Elder Robinson, who created special effects for the rock band Kiss, recently wrote a best-selling memoir called "Look Me in the Eye" about living with Asperger's.

And the reality show "America's Top Model" this season featured a contestant, Heather Kuzmich, who has Asperger's. Viewers could see how Kuzmich had trouble making eye contact with others. She said she often felt as if she didn't get the other models' jokes.

Vista resident Amanda Rollins, 26, was also at the meetup for the golf outing. She said she was recently diagnosed with Asperger's and went to see a doctor after seeing Kuzmich on "Top Model."

"We were watching the show and my mom said, 'Manda, that's just like you,'" said Rollins, who lives at home and temps as a receptionist. "I guess it's kind of nice to have a name on it."

Saks, 30, who grew up in Rancho Bernardo, said that he was diagnosed with some psychiatric disorder as a child, but it was not initially given a name.

"My friend was the fat kid, and I was the weird skinny kid. We were always picked on for being different," Saks said.

And while many teens with Asperger's can become withdrawn, socially isolated, anxious or depressed because of their social difficulties, these emotions don't seem to figure in the makeup of any of these young adults.

"It's labeled a disability, but I think it's just a difference," said Lisa James of her daughter's Asperger's. "I think there is something really wonderful about Aspies. They have the intelligence of adults and the untainted enthusiasm of children."

Contact staff writer Ruth Marvin Webster at (760) 740-3527 or rwebster@nctimes.com.

Fast Facts

For more information or to join the Asperger's syndrome meetup group: Visit aspergers.meetup.com/332 or call Lisa James at (760) 743-0577.

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