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Asperger’s Syndrome Gets a Very Public Face
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By TARA PARKER-POPE
Published: December 4, 2007
Heather Kuzmich has the neurological disorder known as Asperger’s syndrome. She is socially awkward, has trouble making eye contact and is sometimes the target of her roommates’ jokes.
But what makes the 21-year-old Ms. Kuzmich different from others with Asperger’s is that for the past 11 weeks, her struggle to cope with her disability has played out on national television.
She is one of 13 young women selected by the supermodel Tyra Banks to compete on the popular reality television show “America’s Next Top Model.” The addition of Heather Kuzmich to an otherwise superficial show has given millions of viewers an unusual and compelling glimpse into the little-understood world of Asperger’s.
The disorder, considered a form of autism, is characterized by unusual social interaction and communication skills. Aspies, as people with the condition like to call themselves, often have normal or above-average intelligence, but they have trouble making friends and lack the intuitive ability to gauge social situations. They fail to make eye contact and often exhibit a single-minded fixation that can be both bizarre and brilliant.
By definition, people with Asperger’s are outside the mainstream. Even so, in recent months the syndrome has been cast into the limelight. “Look Me in the Eye,” a memoir about living with Asperger’s by John Elder Robison, who once created special effects for the rock band Kiss, has been a best-seller. In August, the Pulitzer Prize-winning music critic Tim Page wrote a poignant article for The New Yorker about life with undiagnosed Asperger’s.
Mr. Robison says the popular appeal of these stories may be due, in part, to the tendency of people with Asperger’s to be painfully direct — they lack the social filter that prevents other people from speaking their minds.
“It’s important because the world needs to know that there are tremendous differences in human behavior,” said Mr. Robison, whose brother is the writer Augusten Burroughs. “People are all too willing to throw away someone because they don’t respond the way they want. I think books like mine tell the world that there is more to us than that.”
But while Mr. Robison and Mr. Page tell the story of coping with Asperger’s from the perspective of men in their 50s, Heather Kuzmich is just beginning her life as an adult with the disorder. And it is often painful to watch her transition from socially awkward adolescent to socially awkward adult.
A gifted art student from Valparaiso, Ind., she has a lean and angular look well suited to the fashion industry. But her beauty doesn’t mask the challenges of Asperger’s. The show requires her to live in a house with 12 other would-be models, and cattiness and backbiting ensue. Early in the show, she appears socially isolated, the girls whisper about her within earshot, and viewers see her crying on the phone to her mother.
One girl is frustrated when Heather, concentrating on packing a bag, doesn’t hear a request to move out of the way. At one point, the others laugh when they stake out their beds and Heather has no place to sleep.
“I wish I could get the joke,” Heather laments.
“You. You’re the joke,” retorts another model, Bianca, an 18-year-old college student who is from Queens.
But while Heather’s odd mannerisms separate her from her roommates, those same traits translate as on-the-edge high fashion in her modeling sessions. In interviews on camera, she often glances to the side, unable to hold eye contact. But Ms. Banks, the ’60s-era model Twiggy and the fashion photographer Nigel Barker, who all appear on the show, marvel at Heather’s ability to connect with the camera. The pop star Enrique Iglesias is so taken by her haunting looks that he chooses her for a featured role in a music video.
In an interview last week, Ms. Kuzmich played down the conflict with the other contestants, saying many more “civilized” exchanges weren’t broadcast. “They didn’t make fun of me that much,” she said.
She tried out for the show, she explained, partly to test her own limits. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” she said.
To her surprise, she was voted the viewer favorite eight weeks in a row, making her one of the most popular contestants in the show’s four-and-a-half-year history. “I’m used to people kind of ignoring me,” she said in the interview. “At first I was really worried people would laugh at me because I was so very awkward. I got the exact opposite.”
Heather made it to the top five, but flubbed her lines while filming a commercial. Later, she got hopelessly lost in Beijing, managing to meet with only one out of five fashion designers. She was eliminated last week, but has since made appearances on “Good Morning America” and “Access Hollywood.” She says she hopes to continue modeling and eventually become a national spokeswoman for Asperger’s.
“I had no idea it would be this big,” she said. “My mom is beside herself. She watched me when I was a kid not have any friends, and she saw me struggle. She’s glad people are starting to understand this.”
01 Dec 2007, 10:06 pm
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