Jessie Kierbow was a strikingly low-maintenance baby. She was so good, in fact, that her parents were occasionally uneasy. “She never cried,” said Jessie’s mom, Lisa Kyler. “We couldn’t tell when she was sick, because she didn’t cry. And she was fascinated with the ceiling fan – she could stare at it for hours.”

When it came time for preschool, experts for the school district where the family then lived examined Jessie and decided she was mentally retarded. That couldn’t be right: Jessie wasn’t like other kids, but she was already scary-smart. Barely out of diapers, she could already read. She hated sudden loud noises – “She clapped her hands over her ears,” Lisa said – and she seemed to prefer her own company to being around other children. Finally, they found out what made Jessie so different: She had Asperger’s syndrome, a neurobiological disorder that most researchers consider a form of autism.

Asperger’s is classified in the medical journals as a disability, but Jessie has the structures she needs to cope. She has wise, attentive parents and an unusually supportive school environment. As with other forms of autism, Asperger’s diagnoses have been on the increase in recent years. In part, it’s because it has been highlighted in the media. Heather Kuzmich, for instance, a former contestant on TV’s popular reality show America’s Next Top Model, has been outspoken about her Asperger’s. And then there’s the simple fact that more doctors and diagnostic specialists recognize it when they see it.

Although the syndrome was identified in the mid-1940s by Viennese pediatrician Hans Asperger, too many kids, until recently, were written off with cruel dismission as odd, incorrigible or mentally deficient. Early diagnosis is critical, so children can start learning specific strategies for dealing with the people around them. Too often, people with Asperger’s suffer from depression and frustration as a consequence of the social isolation they feel.

In his highly readable memoir about living with Asperger’s, author John Elder Robison describes the anger his behavior used to inspire in the people around him. Its title is Look Me in the Eye: My Life with Asperger’s, a refrain that echoes back to his earliest memories. A key trait of Asperger’s is difficulty looking other people directly in the eyes. Mr. Robison, who worked creating technical effects for the rock band Kiss and today is a businessman in Massachusetts, recounts a painful childhood of feeling like a misfit. His condition was finally diagnosed at age 40. “Asperger’s is not a disease,” he writes. “It’s a way of being. There is no cure, nor is there a need for one.”

People with Asperger’s stand out as “odd” because they’re different. Their behavior seems unusual to most people because their brains work differently. The easy social cues that most of us take for granted – the chitchat, the appearance of interest or concern – don’t make instinctive sense to a person with Asperger’s. “Those just aren’t automatic responses for these kids,” said Dr. Michael McLane, a Dallas pediatric psychologist whose practice includes many children with Asperger’s. “The good news is that these are concrete behaviors someone can learn.”

It has become routine for Jessie’s parents to issue her gentle reminders to hit those social marks: answering general questions with an equally polite generality, for instance.

There’s a disarmingly candid logic to the Aspergerian thought process. Should you say, carelessly, “We should have lunch some time,” most people will answer, “Yes, we should.” A person with Asperger’s is more likely to say, “OK, when?” or, “No, I don’t think I want to.”

The other key aspect of Asperger’s is an intense, laserlike focus on a narrow range of interests. Most of us are generalists in the things we think about; people with Asperger’s tend to be super-specialists.
With Jessie, it’s all things Japanese: language, art, books, food, Pokemon cards, games and videos. Her dearest dream is to visit Tokyo. “Tell me who you like better,” she wrote me in a recent e-mail. “Sig, Rulue, Lemres or Schezo?” She attached an anime video for me to watch. I had to remind her that, not being able to read Japanese, I couldn’t tell one from another (I have since learned to recognize a little cartoon guy whose name means “Acorn Frog.” Jessie’s favorite is a character whose name translates rather oddly as “Strange Klug”).

“It can be a variety of things,” Dr. McLane said. “Trains, vacuum cleaners, geography, storm drains – those narrow interests will preoccupy a lot of their time.”

Jessie’s parents work to balance her familiar enthusiasm with new ones. She loves music, for instance, and is crazy about game shows. A common trait among Asperger’s kids: They have a predictable format and often deal with language. She can rattle off the names of popular game-show hosts going back 30 years. Her dad, Mike Kierbow, shares Jessie’s keen sense of absurd comedy. Together, they slyly invented a hilarious game show called “Hillbilly Spelling Bee.” Their comedy routine made me laugh so hard my stomach hurt.

Meeting Jessie, talking to her and swapping e-mails over a series of months made me think hard about the polite social veneer we all adopt to make the world think well of us. What would we be like without the protective armor of conventional social behavior? Whether she would be a dramatically different person without Asperger’s, I can’t say. But 11-year-old Jessie Kierbow is one of the most genuine people I have ever met. She’s funny, sweet, affectionate and astonishingly bright. And it’s absolutely real, because Jessie simply does not have the ability to fake it. If she says she’s happy to see you, you can take it to the bank.

If people with Asperger’s, as a group, lack the natural social skills most of us use every day, they also tend to lack some of our darker social habits too: artifice, manipulation, spite. Not, on balance, a bad trade-off. “It’s a misperception that there’s no positive outlook for these kids,” Dr. McLane said. “It’s not true that they’re not going to be able to go to college or get married or hold a job. They can do it if they’re taught the right skills.”

Monday, December 24, 2007
Source: http://www.dallasnews.com/