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This article was published 9/5/2013 (1092 days ago), so information in it may no longer be current.
TORONTO - Looking at other memoirs on parenting kids with autism, John Elder Robison felt many of those stories echoed a familiar and often repetitive refrain.
"The books are dominated about fighting the school district and fighting the health-care system and fighting the people that don't respect your kid or you," he said.
"I feel like while those things are true — and they may be a big part of the parents' lives — they're not a big part of the kids' lives. And I thought that somebody should show what the kids want in all of this."
Robison's poignant memoir "Raising Cubby" (Doubleday Canada) sees him reveal both fun-filled and dramatic experiences shared with his son who has Asperger's syndrome — a form of autism the author discovered he had at age 39.
Asperger's is a developmental disorder on the autism spectrum which impacts a person's ability to communicate and socialize in an effective manner. Individuals with Asperger's often experience challenges with non-verbal cues and have tendencies to become fixated on a specific topic or activity.
Robison's son Jack — nicknamed Cubby, short for bear cub — who is now 23, wasn't diagnosed until he was in his teens. But in the early chapters of "Raising Cubby," Robison recalled observing his son not playing with other kids and saw parallels to his own childhood — long before the author knew what autism meant.
Growing up in the 1960s, Robison was aware he was different but unsure why. A self-described problem child, he had difficulties making friends, and attending different schools and seeing therapists didn't offer any fresh answers.
Robison also had a tough childhood with an alcoholic father and mentally ill mother. His younger brother, author Augusten Burroughs, documented his own childhood story in the harrowing memoir "Running with Scissors."
Robison dropped out of high school and was able to fuse his love of music and electronics by landing an engineering job with the sound company formed by Pink Floyd.
He went on to collaborate with Canadian group April Wine, patching together a sound system for their tour, and also made special-effects guitars for the rock group Kiss in the late 1970s.
Robison's experience designing sound systems landed him a role creating special effects for electronic games. He now runs an independent restoration and service specialty shop in Massachusetts where he repairs and restores luxury vehicles, including Bentleys, Jaguars and Rolls-Royces.
Robison wrote in "Raising Cubby" of how his son's challenges stood in sharp contrast to his gifts. He was able to watch a film and parrot words back verbatim, excelled in math and had a great vocabulary. But while Cubby liked books and enjoyed having them read to him, reading for himself initially posed an immense challenge.
Teachers taught him the mechanics of sounding out words, and the desire to stay in the loop with fellow summer campers reading the latest "Harry Potter" tale all seemed to work in giving him the push he needed. When the school year ended, Cubby had been behind his classmates in reading. By the end of the summer, he had surpassed them and had moved to the college level.
Robison saw parallels to Cubby's early troubles with reading to the challenges he faced learning digital engineering in his early 20s where he powered through several texts and years of curriculum in a two-week marathon session.
"Some people call that kind of sudden, self-directed learning a savant ability," he wrote. "People with autism often have an unusual ability to concentrate. Sometimes we get fixated as a result, and that's a disability."
Robison said he initially told himself that Cubby couldn't have Asperger's because he was eventually able to forge friendships and the kinds of social connections he had struggle to make.
"I think that that shows — what they talk about in the autism world — the power of early intervention. If you get involved with a kid and speak to his weaknesses early on, you're able to reduce that stuff pretty effectively.
"In 'Raising Cubby,' I talk about giving him practical advice and steering him on a good path, but I think that we do stay focused on doing fun stuff. And I think fun has been lost from a lot of people's lives."
Robison transformed even the most mundane experiences into adventures, from telling Cubby colourful tales of his dad being transformed into a dog by a wizard to getting the chance to drive a train.
"I feel sort of like grownups have lost some of the magic by closing their minds to those possibilities and so I try to offer Cubby more to think about," said Robison.
Amid the often humorous anecdotes in "Raising Cubby," Robison also delved into a recently tough chapter for the family.
In his teens, Cubby began to develop a strong interest in chemistry and a fascination with explosives, even uploading videos of his experiments. While wanting to encourage his son's passions, Robison was fearful of how Cubby's actions would be viewed by outsiders.
Soon, the U.S. Bureau of Alcohol, Tobacco, Firearms and Explosives was involved and Cubby's home chemistry lab was raided. Even though he was never arrested and federal agents had concluded Cubby was "just a smart kid who wasn't a threat to anyone," a prosecutor still decided to pursue charges and the case went to trial. He was eventually exonerated.
"It was unsettling. It was a very, very bad time, the idea that we would be attacked in that way for what was nothing more than the pursuit of science," said Robison.
Cubby hasn't been deterred from his passion for science. He is set to earn his bachelor's degree in chemistry from the University of Massachusetts this fall, and is working on an open-source project for fellow chemistry enthusiasts.
As author of previous memoirs about his Asperger's — "Look Me in the Eye" and "Be Different" — and his work as a lecturer, Robison has become a public face and advocate for others with autism and neurological differences.
"I think that autistic people and people who are different have brought the world a large fraction of its greatest inventions. And I think that that comes about not because autistic people are necessarily smarter but because autistic people are more focused," said Robison.
"That's an example of how it's a disability — that you're so focused that you can't connect to other people and engage people normally. ... But when you can focus on something so intently that you can see your way to solutions that have eluded others for years or decades, that's a great gift. So the very same trait can be both things.
"And I think for many of us, we can do things that benefit others. But it may come at a high personal cost to us."