LEWISTON — An interesting thing happens as Derek Volk tells his story about raising a son with autism.
The men and women in the audience nod frequently with understanding. Husbands look at wives and smile grimly. They recognize Volk’s experiences — experiences that sound a lot like their own.
“It’s so easy to connect with him,” said an Auburn woman named Darcy, who has an autistic nephew and a son with ADHD, or attention deficit (hyperactivity) disorder. “If you know anything at all about this, you get what he’s talking about.”
Volk co-wrote the book “Chasing the Rabbit: A Dad’s life Raising a Son on the Spectrum.” In fact, he co-authored the book with his son, Dylan, who was diagnosed with Asperger’s Syndrome at the age of 8.
Speaking to an audience of three dozen Wednesday night, Volk made no attempt to soften his story. It’s at times a harrowing tale, with family violence, suicidal ideas, jail visits and all forms of ugliness and despair.
Dylan, now 24, is quite successful — but his road to that success was anything but smooth.
“There were a lot of years when I was really angry at him,” Derek Volk said of his son. “I was angry not for something he had done, but for what he was.”
For many years, what was wrong with Dylan was far from clear. There were wild guesses, misdiagnoses and a lot of futile hope that the boy was simply different from other kids.
There was the way Dylan would scream violently and inconsolably any time he was put into a car seat. There was his refusal to play with other kids and the stop-and-start bursts of vocabulary.
When Dylan Volk learned to use the potty, all he wanted as a reward was the chance to look into the toilet tank and see its inner workings, his father said. He had the same kind of fascination with other things most children would find dull. For a time, his father said, Dylan worked to memorize the wingspan of every bird he could identify. When he was 5 years old, the boy decided he wanted to be a furnace.
And then came the tantrums — out-of-control emotional outbursts that grew worse with each passing year. Over and over, Volk and his wife had to drive back to schools or to camps to pick up their son because the teachers and counselors could not handle him. Most were not interested in what afflicted Dylan, they just wanted him gone. Derek remembers one camp counselor who insisted that the Volks come for their son in the middle of the night.
“She said, ‘Come pick up your son, he’s a monster,” Derek Volk recalled. “That would be the first of many places where he was asked not to come back.”
As they sought to discover what caused Dylan’s behavior, they consulted with experts. The terms “autism” or “Asperger’s” were never mentioned, Volk said.
“We were trying not to bury our heads in the sand,” Derek Volk told the audience at Lewiston Middle School. “We knew something was wrong with Dylan. We just didn’t know what.”
When the diagnosis was finally made, it changed little. Dylan only became harder to control as he grew older and bigger. There were screaming arguments that threatened to tear the family apart.
“There were times during these confrontations that I would cross the line,” Volk said. “There were some very unpleasant things that I was thinking and doing at that time.”
Dylan lumbered his way through high school, Volk said, and graduated with no marketable skills. Going to college was out of the question. Soon Dylan was arrested for the first time and he continued to talk about suicide. The future looked bleak. Then the Volks gave their son an ultimatum: either go to a special school in Utah or to a homeless shelter.
Dylan chose Utah. It wasn’t an instant success, Volk said, but over time, Dylan began to change. He began to accept what he was and to adapt.
The school in Utah, Volk said, “literally saved his life.”
Volks’ is a grim story, but the ending is mostly happy. Dylan has gone on to great success: in addition to co-authoring the book, he hosts a radio show, maintains a popular website and produces YouTube comedy acts, some with tens of thousands of views.
Dylan, now living on his own in Austin, Texas, regularly tours with his father to talk about the book and about their struggles. He wasn’t in Lewiston on Wednesday night, but the audience seemed no less impressed because of it. When Derek Volk finished his talk, the applause was long and loud. Most of the men and women in the audience stayed late to talk to the author about their shared difficulties.
“I’m going to refer him to a lot of people,” said Darcy, one of many who lined up to buy “Chasing the Rabbit” after the talk.
As for Derek Volk, he’s never had much use for the adage that God never gives us more than we can handle.
“That’s total crap,” he told the audience. “Sometimes we’re given much more than we can handle. And I think that’s because God wants us to turn to him.”
Find out more at chasingtherabbit.org
What is Autism?
* Autism is a bio-neurological developmental disability that generally appears before the age of 3
* Autism impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities
* Individuals with autism often suffer from numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sensory integration dysfunction, sleeping disorders, and more
* Autism is diagnosed four times more often in boys than girls. Its prevalence is not affected by race, region, or socio-economic status. Since autism was first diagnosed in the U.S. the incidence has climbed to an alarming one in 68 children in the U.S.
* Autism itself does not affect life expectancy, however research has shown that the mortality risk among individuals with autism is twice as high as the general population, in large part due to drowning and other accidents.
* Currently there is no cure for autism, though with early intervention and treatment, the diverse symptoms related to autism can be greatly improved and in some cases completely overcome.
— National Autism Association
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