Dylan Volk took his mother’s cellphone, opened up her Facebook page and posted, “Dylan killed himself today. We probably should have seen it coming. Your prayers are appreciated.”

The Facebook page of Amy Volk, a state legislator with a high profile, lit up. In less than an hour, she received 57 comments and dozens of private messages. When his mother confronted him, Dylan pointed out that all the people who responded expressed sympathy, but none said they would miss him.

It was his final cry for help.

That was in 2012, and things are much better for the Volk family of Scarborough these days. Dylan, who has Asperger’s syndrome, did not kill himself. Instead, after years of trying to figure out what to do with their difficult son, the Volks found a residential program in Utah for young adults trying to learn to live independently.

On Saturday, Volk will tell his story at the Southern Maine Autism Conference at the Doubletree Hotel in South Portland. He is speaking with his sister, Mariah, about relationships among siblings when one has Asperger’s. He was the keynote speaker at last year’s conference.

Over the past year, Volk and his father, Derek, have shared their story with thousands of people across the country. Derek Volk, president of Volk Packaging Corp. of Biddeford, self-published a book last spring, “Chasing the Rabbit: A Dad’s Life Raising A Son on the Spectrum,” which recounts in blistering detail and shocking honesty the difficulties of raising a child with Asperger’s. He has sold more than 2,000 copies and given 50 or more talks from Maine to Florida and as far west as Washington state. Since the book came out last May, Derek Volk estimates he has talked to 10,000 people about his experiences.


Talking about his son, he said, has become his mission. “I feel like everything we went through with Dylan happened because God wanted me to write this book so we could help other families,” Derek Volk said. “I could do this all the time. I go wherever I am invited.”

Asperger’s syndrome is an autism spectrum disorder. It was first observed in the 1940s, and became a clinical diagnosis in the 1990s. People who have it struggle with social interaction, and often act out their frustrations with aggressive behavior.

In the book, Volk writes about what it’s like to raise a kid with Asperger’s and how hard he and his wife worked to keep their marriage together, their family intact and their lives as normal as possible. They found themselves constantly apologizing for their son’s behavior and explaining to people what Asperger’s is and how it affects people.


The search for normalcy is a recurring theme in Dylan’s life. For as long as he can remember, Dylan Volk has heard people tell him there’s no such thing as normal. During visits with doctors, specialists, counselors – and anyone else his parents took him to see about his outrageous and often inappropriate behavior – Volk was told again and again, “We’re all weird in our own way.”

The message is part of the package that comes with a diagnosis of Asperger’s. Those words are supposed to make those who receive the diagnosis feel better about themselves, and maybe help ease their anxieties so they can feel more comfortable and less self-conscious in social situations.


Volk, 24, rejects the argument.

“There is a difference between us and regular people. Yes, everybody is weird, but they have quirks that fall within the range that society considers normal, and we don’t. Our quirks fall outside the range,” he said. “If you know someone with Asperger’s or trying to fit in socially, there is nothing wrong with letting them know there is a normal, and sometimes it’s OK to try to be normal.”

Derek Volk titled the book “Chasing the Rabbit” because that’s how he sees his son – a greyhound race dog chasing a rubber rabbit on the racetrack that is always just out of his reach.

In Dylan’s case, the rabbit is a “normal” lifestyle.

“He sees it. He knows what it looks like,” Derek Volk said. “But no matter how fast he runs, no matter how much he exhausts himself, he never catches it.”

Dylan’s parents were high school sweethearts, and wed during their college years at the University of Maine in Orono. Dylan was born in 1991 when they were still in school. When Dylan was 2, Amy Volk said to her husband: “Something’s not quite right with Dylan. I don’t know what it is, but something’s not quite right.”


Dylan didn’t like interacting with other kids. During play groups, other kids played together. Dylan played alone, and didn’t play well with others when he did interact.

Soon, Dylan’s quirks presented themselves in other ways. He obsessed over things. First it was vacuum cleaners, then toilets. Later, it was furnaces. One year, he went trick-or-treating dressed as a furnace. His obsession became so intense, father and son attended real-estate open houses on Saturdays so they could check out people’s basements. “We’d go in and look around and then casually say, ‘Can you tell me where the basement is?’ Then we would go into the basement and wait until the furnace came on so he could study it and listen for the noises it made,” Derek Volk said.


The obsessions changed with age: birds, “Star Wars,” cars and, eventually, rap music.

With the obsessions came temper tantrums that grew in intensity. At nursery school, Dylan threw sand in another child’s face. That was the first time someone outside the family suggested that Dylan might have behavioral problems. When Dylan was 5, his parents sent him to summer camp. It didn’t last. The camp director called and said: “Come get your son. He’s a monster.”

“That was the first of a series of places over the years that Dylan would be asked not to return,” Derek Volk said.


It also began what the family calls the “diagnosis-of-the- month club.” They visited medical doctors, therapists, counselors, anyone who could help. Everyone had an opinion and many offered diagnoses that proved incorrect. The Volks were told their son had Tourette’s syndrome and OCD. One specialist described Dylan’s condition as “spirited child syndrome.”

And then one of Derek Volk’s brothers sent him a copy of an article in The New York Times about a young boy who had memorized the New York City subway system. His condition was described as Asperger’s syndrome. The brother attached a sticky note: “Could this be what Dylan has?”


The dots finally connected.

A formal diagnosis followed, and that brought a measure of relief because it offered an explanation for Dylan’s behavior that made sense. Until then, the Volks were told they were lousy parents who were raising an unruly kid who was never invited to birthday parties, playdates or friend’s houses. “He’d go once, but he never got invited back,” Derek Volk said. “It was a pretty lonely existence.”

And it got worse. Middle school and high school were especially difficult, and Dylan found himself being bullied and acting out. He was kicked out of school, got in trouble with the law and eventually nearly lost the support of his family.


The breaking point came late in 2012. He was out of high school by then, and floundering. He couldn’t keep a job, and his parents kicked him out of the house after he pepper-sprayed his sister when she asked him to turn down the TV volume.

A few days later, he made the post on his mother’s Facebook page.

Dylan lives independently in Austin, Texas, now and is planning to move to Los Angeles, where he hopes to make a career in comedy or music. The one place where he feels comfortable is on stage. He has adopted the stage name Dielawn, and does a radio show from his home in Texas once a week. It airs Saturday mornings on WLOB in Portland. He also has a YouTube channel, where he posts comedy videos.

“I’m only uncomfortable when I am not on stage,” he said. “I want to make it as an entertainer. I know I should be an entertainer, either a comedian on TV or a personality on the radio.”


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