Island Profile: Young author explains life with Asperger's

Meet Alex Olinkiewicz. If you live on Shelter Island, you probably already know him, at least casually. But until you sit down and talk with him, you may know little of his warmth, charm, intelligence and his self-awareness about coping with Asperger’s syndrome and other peoples’ reactions to it.

The 21-year-old 2009 Shelter Island High School graduate has a subtle shyness about him that he somewhat masks with a self-deprecating sense of humor.

Many of his classmates may have left the Island for college or jobs but you’re likely to find Alex often alone at home, hunched over a computer dealing with graphics, one of the many talents this young author possesses.

He shows off his pictures and personality in his just-published book, “In My Mind — A Journey Through My Life With Asperger’s/Autism,” which he will be discussing at book signing events on and off the Island in the coming weeks.

Alex will be talking about his book and signing copies on Saturday, August 18, from 10 a.m. to noon at the Dering Harbor Inn. The following Saturday, August 25, from 10 a.m. to noon, he’ll do the same at Claudio’s in Greenport; and on September 1, he’ll be at the American Hotel in Sag Harbor from 10 a.m. to noon.

The book was written with the cooperation of Islander Dr. Richard O’Connell, a retired guidance counselor and author, who spent two years recording sessions with Alex, having them transcribed and then working with him to organize his thoughts into the book, for which Alex created the graphics.

Unlike the scholarly tomes that have been written about autism and Asperger’s syndrome, Alex’s story is very personal and it paints a vivid picture of what it’s like to be someone or have a family member who has Asperger’s.

The idea of a book started with a YouTube video Alex made when he was 16. The video got a few hundred hits and then, with promotion from YouTube, hundreds turned to thousands of views and finally more than a million.

Most online reactions to the video have been very positive, with only “a few jerks,” Alex said. “I mostly shrug them off,” while others online tend to answer those “jerks,” he said.

When he first tried to record his thoughts by talking into a tape recorder, it didn’t work, Alex said. That’s when he and Dr. O’Connell decided to record conversations as a means of drawing out Alex’s story.

“Realizing that people like me go through a lot of hell because we’re misunderstood, you have to wonder if there were a cure, would I take the antidote,” Alex says in the video. “The answer is no! I do not want to get rid of what makes me who I am. I don’t feel fully disabled. I will admit that I am sometimes disabled.

It’s what makes me different from everybody else. Why should I always want to be like everybody else?”

Still, when he’s angry, he admitted,   “I sometimes blame my disorder.” But generally, he said he thinks life might be “boring” without Asperger’s.

He does wish that society understood some of his needs. Just as people who can’t walk use wheelchairs and those who are blind have Braille, canes and guide dogs, he feels there should be at least something — if only an understanding in the culture of what his condition is all about — that would help him to cope.

Just knowing other people aren’t put off by what might seem peculiar or off-putting about his behavior would be a big help.

In today’s world, everyone sometimes experiences a sense of information overload. For someone with Asperger’s, that feeling is profoundly deepened. The world can seem a chaotic jumble to the Asperger’s patient because he or she is often overwhelmed by stimuli.

One way to cope with it all is to shut down. To the observer, someone with Asperger’s may appear to have flicked a switch that simply turns off the input, Alex said.

Alex sometimes hits his own hand to give himself focus on something other than all the outside stimuli. In particularly difficult situations, he’ll look down and refuse to acknowledge anything around him, he said.

He points to the part Dustin Hoffman played in the film “Rainman” about an autistic man. The actor would tap his head when he felt assaulted by sights and sounds around him.

Exactly how Asperger’s syndrome manifests itself will vary from person to person on the autism spectrum, Alex said. He explained his views using a pie chart: All human beings have various abilities that make up the pie. But a person who isn’t autistic has perhaps 15 percent of his pie devoted to social skills while someone who is autistic may have a only 3 or 4 percent of his pie dedicated to social skills.

“I’m very, very social, which is very unusual for people with Asperger’s,” Alex said. Still, he weighs his social skills at about a 12 compared with someone without Asperger’s who is likely to be a 15.

That social component results in an Asperger’s person sometimes being unable to understand others’ meanings, he said. But it has nothing to do with intelligence, a fact he demonstrates with his own conversation and other abilities.

He remembers when he was about 6 his parents were told he should be tested. After a battery of tests, his parents and doctors never used the words “autistic” or “Asperger’s” with him.

“They told me, ’Your mind works differently than others,’” he said. It was later at school that he heard the word “Asperger’s” applied to him and began to understand how it made his learning difficult.

“They tried their best to help me out,” he said about his teachers. He particularly credits teacher Robin Anderson, who worked with him throughout his schooling. “She became one of my first and closest friends,” he said. She helped him to improve his social skills and assisted with homework, he said. In many ways, Ms. Anderson paved the way for a less isolated experience at school than he would otherwise have had, he said.

Still, “School felt like a prison,” he said. But the last few years without school have been isolating, he added. It’s part of what led to the book because it gave him a goal, something on which he could focus.