When Alex Olinkiewicz was 16, he made an eight-minute video about what it’s like to have Asperger’s syndrome and posted it on YouTube. Not long after, he opened his email to see that his video, In My Mind, was on YouTube’s featured list and he had 200 emails from people who had seen it. “It was the best day of my life,” he said.
Twelve years later, there have been more than 1.5 million views of Alex’s video, and hundreds of thousands of those viewers have contacted him, mostly to thank him. “It made a huge impact on my life, and it gave me a calling,” he said.
Alex was diagnosed with Asperger’s, a subtype of autism, when he was 6. Now 28, he’s spent decades learning to live in the world he was born into, and the last decade explaining his world to others. On both fronts, he has made a lot of progress.
Alex was born on September 2, 1990, at home on Shelter Island, and is proud to be a harelegger, as is his younger sister Kate, who still lives on the Island and works on the South Ferry. Alex’s older sister Brittany now lives and works in the city, and his younger brother Chandler works at SALT.
Alex’s parents divorced when he was a kid, and he makes regular visits to his mother, who lives in Maine. His father, Jim Olinkiewicz, is a builder who lives on the Island. Alex went to the Shelter Island School, graduated in 2009 and lives on his own in a house on Midway Road.
When Alex was a child, his parents knew that he had difficulty fitting in, and when he entered the Shelter Island School, the counselor there said they could help him once he had a diagnosis. Although Alex did not understand it at the time, years later he figured out that when his parents told him that his brain worked differently than other people’s, it was because he had been diagnosed with Asperger’s syndrome, although it would be years before he knew the name of his condition.
Autism often comes with extreme sensitivities and muscular discomfort, and Alex could only sit for long periods with his legs folded, not in a chair. Loud noises or screams hurt him, music was painful. Reading was very difficult for him, and he had to learn to use a narrating program to get through his assignments.
A ray of light during Alex’s difficult school years was Robin Anderson, the special education teacher. “She was my first and true friend. I went to her every single day for the entire 12 years I was in school. We talked, she helped me with my homework. She had tea and goldfish crackers. I liked hanging out with her.”
Alex’s efforts to adapt to school life put him under daily stress, and it wasn’t until high school that he made an important discovery. When he explained to people why something was difficult for him, it helped. “I can’t just translate words. My mind has pictures, not words,” he said. “I decided to start explaining it, and that led me to make Inside My Mind.
In 2012, Alex wrote a book based on his transcribed conversations and illustrations titled In My Mind — A Journey Through My Life with Asperger’s/Autism. Initially self-published, it was published again by Future Horizons in 2014.
In a school of only a few hundred students, Alex was the only one diagnosed with autism for most of his time there. “It was hell for me,” he said. “I wasn’t bullied or anything, but I was very much an outcast. Once I made my video I think my classmates understood me better.”
To promote his book and video, Alex attended conferences and even did some speaking. At one conference he met Dr. Temple Grandin, a well-known autism spokesperson. He was surprised that Dr. Grandin, who is also on the autism spectrum, had a manner and way of speaking that were very strange to him. “She’s a farmer girl. That’s her personality. I’m not much of an animal person,” he said. “We had lunch, and she told me, ‘The first thing you need to do is get rid of that big gut.’”
Alex worked for a time at his grandfather’s video store in the Heights, and after his Dad bought a gas station and store, Alex worked the cash register. But standing caused him pain in his legs, and even with a special chair his father put in for him, Alex struggled with the stress of standing and the constant flow of strangers coming in.
In the years after Alex graduated from high school, he continued to develop his independence and ability to take care of himself. He began to carefully monitor the food he ate, changing his diet, and gradually losing excess weight. He learned to prepare his own favorite foods, usually pasta with cheese, or pizza. And although he once thought it impossible, with his dad’s encouragement, he learned to drive.
“I thought I would never learn to drive because I sit Indian style and I panic in crowded conditions. My dad said drive, and I did even though I was irritated in the legs,” he said. “I was practicing in the parking lot at Wades Beach, when something clicked in my head. I started to get giddy because I was getting the hang of it. Now, I’m the designated driver for my family because I’m a straight edge.”
One night, on the way home from seeing the movie, “Boyhood,” together, Alex’s dad told him he thought the time was right to try college. Alex wasn’t so sure. His dad argued that now that he knew how to drive, and had gotten control of his weight, college might make sense.
Around the time that Alex graduated from high school, he began to get interested in video games, and began to play one called BioShock. “It grabbed me,” he said. “It showed me what games are capable of.”
At 23, five years after graduating from high school, Alex enrolled in the Art Institute of Pittsburgh Online and began to study game development. There were prerequisites, like a class in mathematics, and another in the basics of art. Along the way, Alex discovered that he had skills he never suspected. “I thought I would be a B, C student, but I left with a 3.9.”
In one of his college classes, Alex, working together with other students on a team, did the programming and modelling for a video game called FrostBite: Deadly Climate, that so impressed one of his professors that he suggested Alex continue to develop the game beyond the class.
Now Alex is working on a new game, assembling a tech demo and contemplating a Kickstarter campaign to help finance it. His new game is called PaperCut, and it takes place in a papercraft world, in which an evil psychologist who believes in Creationism tries to make a new world, declaring, ‘Space is God’s Canvas. Paper is mine.’
Alex said no one has done more to help him than his father. “My Dad gave me his support. Now that I’m out of college, I’m going to have to step out.”
He said he was lucky to grow up in the safety and familiarity of Shelter Island, but he feels the need to get away. “I am somebody young, who is already isolated due to his disorder, I need to break out more, even though I have my fears of leaving the Island and concerns about going somewhere else.”
Alex has achieved one of the most important markers of maturity – comfort in his own skin – and it’s part of what makes him so good at explaining autism to people who don’t get it. “If there was a cure for Asperger’s I wouldn’t take it,” he said. “I have problems because things were designed for the majority, but maybe my mind was made this way so I can achieve something different.”