Cole Robinson-Boivin turned 16 a few days ago.
He likes movies, computers, video games and animals.
He can tell you why a horseshoe crab is more like a spider than a crustacean, how a narwhal whale uses its tusk and why the Permian extinction was more devastating than the end-Cretaceous extinction that felled the dinosaurs.
“He knows more about evolution than anybody I know,” said Cole’s mother Julie Robinson while sitting at the family’s dining room table.
Cole, like many people affected with autism, is highly intelligent academically, but has trouble keeping focus and sometimes gets overwhelmed in social situations.
“I wish I could just get rid of my autism sometimes; that way I’ll make more friends easily,” said Cole.
“His hard drive is as big as this table, but his processor is tiny,” explained Julie.
As necessity breeds invention, Julie became an expert on the disorder and co-founded Autism Yukon, a non-profit volunteer-based organization that supports about 20 families in the territory.
The organization received its first government grant in January — a $61,000 infusion from Heath and Social Services.
It’s a start, said Julie, who would like to see the operation set up in an office space, hire a half- or three-quarter time paid director and increase the amount of training the organization gives to frontline workers in the territory.
As well she would like to see the development of a collaborative approach to treatment with a spectrum of medical professionals working with the family — like psychiatrists, psychologists, speech-language pathologists, and occupational and physical therapists.
The pool of knowledge is changing at lightning speed and the territory is falling behind, said Julie.
Training for frontline workers is desperately needed in the Yukon so the disorder can be diagnosed earlier and treated earlier.
And the earlier a child is diagnosed, the better the treatment and the better the prognosis, she added.
Although autism was originally thought to be rare, more recent studies have estimated the prevalence of autism and related disorders to be as high as one in 166.
Currently, there is no definitive medical test to identify autism.
Generally, the autistic have impaired social and communication skills, and behaviours like preoccupation and resistance to change, according to the Autism Treatment Services of Canada’s website.
Having autism is like being an “anthropologist on Mars,” Temple Grandin, one of the most well known people with autism, said in an interview with Oliver Sacks.
When Cole was two and three he couldn’t talk; his world was full of too much light and too much noise. At age five he knew 50 words and he couldn’t look people in the eye.
“A lot of adults with autism will describe their early experiences like being at a rock concert with lots and lots of lights going all the time,” said Julie.
Three years ago, before the family started behaviour therapy, Cole couldn’t take a bath or dress himself.
Now he’s well on his way to living independently.
The government plans to dole out a total of $320,000 to 12 families for therapy services for 2005 and 2006.
Each family prepares a budget, which they give to the government. In turn, the government funds the cost of treatment. Costs vary depending on what treatment the families think they need.
The Robinson-Boivin family receives about $20,000 a year under the program that has been available in the territory for the past three years.
Behaviour therapy teaches basic skills by breaking them down into a sequence of tiny steps. Things like getting dressed in the morning, eating with a fork and when to smile all must be painstakingly learned, step-by-step.
“It probably takes Cole 100-times longer to learn a basic skill than somebody else,” said Julie.
Cole works with behaviour therapists four times a week.
“(They teach) me how to be independent and to be social and to communicate because I have autism,” said Cole.
“Sometimes I have trouble being polite.”
“When a person has high sensory overload the normal thing for anybody to do is to shut down or freak out, so with people with autism you’ll find they’re either acting out verbally or physically they’re moving their arms,” said Julie.
So far, the behaviour therapy has taught Cole many strategies to deal with the effects of the disorder — tools that keep him focused and relaxed.
For example he has a “Z button,” a place on the back of his neck he pushes when he needs to relax. (It’s named after a button on a Nintendo-64 video game controller.)
Early individualized behavioural therapy gives children a better chance at a successful life
“It is life-saving measures and support, but it’s also cost saving in the long run,” said Julie.
“For people who have profound autism and they don’t get this type of early intervention, we’re talking $300,000 to $400,000 a year to support them.
“They’ll live in institutions and have 24-hour staff with them supporting the type of outlandish behaviours that happen because they’re misunderstood and don’t have the opportunity to learn the skills; it just compounds itself,” she said.
The biggest difference seen in children with early intervention is that they can go to school and lead a “normal” life, said Dr. Bernard Rimland, founder of the San Francisco, California-based Autism Research Institute.
“About half the kids who get (behaviour therapy) recover to the point where they can actually go to school. This has been shown in several studies and that makes a huge difference.”
The biggest problem facing children with autism is an inability to pay attention, said Rimland.
“(Behaviour therapy) teaches them the alphabet, it teaches them the colours, it teaches them the details, but the overriding benefit is that they learn that if they are motivated they can pay attention.”
After three years of intensive training the Robinson-Boivin family has seen miraculous results.
“Since we’ve had the opportunity to have this extra support, things have moved along at lightening speed for Cole,” said Julie.
It’s baby steps, she said. “If my son were born 30 years ago, he would have been put into care, probably in Vancouver. Today he’s fully integrated into the mainstream school system and managed to get on the honour roll at F.H. Collins.”
And society is moving into an era of computer technology that allows Cole’s kind of brain to excel in the workforce, she added.
One day Cole hopes to become a biologist or paleontologist at the University of Calgary.
For now, the family is taking it one step at a time.