This article first appeared in the St. Louis Beacon, June 23, 2009 - On June 2, Aaron Likens, 26, drove confidently from his home in St. Louis to New York, certain that landmarks and streets would appear exactly as his GPS promised.
As he negotiated his way into Manhattan, the first-time New York driver was undeterred by honking cabbies, the loss of his satellite signal and a wrong turn that somehow landed him on Staten Island. But had he needed to stop for directions -- that would have been scary.
The words "Can I help you?" are terrifying to Likens. Like many other people with Asperger's, he's afraid of what comes next: the unscripted, open-ended nature of a casual conversation. To avoid that situation while shopping, he grabs whatever item he's come to buy and makes himself unavailable.
"When I go into stores now, I'm always on my cell phone, even if I'm not talking to anybody," Aaron said.
ILLUMINATING THE ASPERGER'S EXPERIENCE
"Aaron desperately wants to interact like we do, but it's very painful and anxiety-provoking for him," said John Guercio, vice president of programs and director of research at the Judevine Center for Autism in Olivette.
Guercio's knowledge of what it's like to have Asperger's and autism in general has been vastly enhanced by Likens' ability to describe his experiences. In what experts are calling a remarkable first book, Likens compares having Asperger's to being someone who's paralyzed everywhere he goes except for Kansas. While Aaron may appear unaffected when he's in his "Kansas" -- driving a race car or playing video games -- he's different from others in most situations.
His book, "Finding Kansas," was published by a company whose owner is a friend of Likens' father, Jim. It prompted the national organization Autism Speaks to ask Likens to advise its staff. That was the reason behind his recent New York trip. Guercio was not surprised.
"Very rarely do they have insight as to why they're doing what they're doing -- and Aaron has the insight," said Guercio, who also has an autistic son.
It can be humiliating when someone knows Likens in his comfort zone, then sees him out of it. "It's like being completely naked and powerless to do anything," Likens explained on his website .
One way Likens tries to guard himself is with specific clothing, trappings he also calls "aliases."
"I'm dressed like an author right now," said Likens, in his button-down collar shirt, khaki pants and tennis shoes. "You're not really talking to me, the person; you're talking to me, the author -- there's a protective layer."
JUST 'MY KID'
As a child and into his pre-teen years Likens was a bright child with an IQ of 158. But his grades weren't very good because he missed so much school to avoid the unbearable confusion of a typical classroom.
"The screaming, the other kids' random outbursts, the unpredictability," Likens listed some of the things that disturbed him. "I would do anything to get out of going."
While other children wondered when their favorite TV shows would be on, Likens pondered more serious matters.
"I was concerned with what the Soviets were doing with their bombs. Also, weather, world events. I was the only kid who knew what was going on," he remembered.
While Jim was raising Aaron, traveling to kart race events across the country, he knew his son was different. But teachers said he didn't socialize with others because he was so intelligent, and Jim accepted his son's peculiarities.
"He was just my kid," Jim Likens said
After Aaron complained of migraine headaches, Jim and Aaron's mother took him to two different therapists, which resulted in a diagnosis of Pervasive Developmental Disorder -- Not Otherwise Specified (PPD-NOS) -- and dire predictions for Aaron's future.
"One said, 'The most famous PPD-NOS was Ted Kaczynski, the Unabomber'," Jim said. "Another one said, 'I think your child could grow up to be a serial killer."
ASPERGER'S DIAGNOSIS LEADS TO DISCOVERY
In 2003, after Jim Likens remarried, his second wife saw the situation with new eyes and wondered if something else was going on. After reading an article about autism, Jim took Aaron to St. Louis' Judevine Center for Autism, where he was diagnosed with Asperger's.
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To cope with the news, Aaron Likens -- who completed his GED at 16 -- started writing about his experiences and feelings, a process that ultimately became his first book.
"I was going to feel bad whether I wrote or not so I might as well write," Likens explained.
Likens compares his difficulty interacting with others to being in an audience during a play. Imagine, he says, that a character interrupts his monologue, breaking the so-called fourth wall -- the imaginary barrier between the actors and the audience -- to ask, "What should I do?"
"You're going to be terrified and you're going to say, 'Is he actually talking to me?'" Likens said.
As for the notion that people with Asperger's aren't empathetic, Likens explains that his concern for others is directly related to his own aversion to variables, which begs the question: Is Likens so different, or is he just more honest than most people?
"Showing empathy is more out of a self need, because as long as they're not happy, or whatever, it could affect me. And if it affects me, there will be a change of some sort -- and that's bad," he said.
AARON'S ROAD TO 'KANSAS'
As a toddler who spent his early years in Indianapolis, Likens quickly found his life's passion: auto racing. Later, his father bought him his first race car, and from the ages 12 through 19 father and son traveled more than 200,000 miles across the U.S. to various contests.
"It's not just speed that is the allure; it's the closeness of the competition. I more like the side-by-side closeness of it," Likens said.
In recent years, Aaron has worn many hats while in his "Kansas": race director for a regional series, chief starter for another competition and racing school instructor. Much more than just a comfort zone, Aaron describes the racing arena and video gaming as a "livable" zone with everything else, a "worthless" zone --- and no middle ground in between.
It's a situation that makes independent living a distant reality. Take cooking, for example.
"Microwaves are just so scary. It says, 'Cook for two and a half to three minutes.' What does that mean? Is it two and a half or three? That gray area -- I don't like it. And if it's not warm enough, how long should I put it back in?"
Cooking on a gas or electric stove is equally puzzling. "As klutzy as I am, I'm sure I'd blow up half the block," Likens admitted.
Also perplexing is the idea of a social life. As a teenager, he struggled mightily in relationships with two different girls. In his book, Aaron describes life after the breakup with his second girlfriend: “Even though I didn’t care for her, I miss her.”
He explains the unlikely prospect of friendship as a scientific exercise.
"If you put two chemical compounds together, typically there's a reaction," Likens said. "Me outside in the world, the two, there's no reaction. I would like to [have friends] but it probably wouldn't work all that well."
FROM 'KANSAS' TO GERMANY -- WITHOUT A SUITCASE
Likens, who's visited several countries including Kenya, Madagascar, Latvia and Lithuania, has a very important overseas adventure on his 2010 agenda: taking an extended trip to Germany and leaving all his possessions, including his clothes, behind.
It's an effort to challenge a concept he calls "firsts." Once Likens does something one way, he repeats the pattern indefinitely. He twirled the same piece of yarn on his baby blanket from the age of 3 months to 12 years; whenever he traveled with his father from Indianapolis to Nebraska, he had to buy a lottery ticket at the same Amoco station each time.
Dropping himself into unfamiliar territory with none of his belongings will force Likens to survive without his ritualized habits, a concept he calls "relocation theory."
"If you delete all the routines, that's the only way to figure out what will happen," Likens said.
The result of this journey will be the subject of Likens' third book. (He's written a second that digs deeper into the concepts of his first narrative.)
By taking this step, Likens will completely immerse himself in new circumstances, the thing he fears most. The depth of his discomfort with altered routines is revealed in a story Jim tells, chuckling, about how an Autism Speaks representative asked Aaron: "If you could take a pill and not have Asperger's, would you do it?"
"Aaron said, 'No," Jim said. "When they asked him 'Why not?' he answered, 'Because people with Asperger's hate change.'"
Nancy Larson is a freelance journalist who has a 19-year-old son with Asperger's.
