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When Canadian comedian Eugene Levy thinks about autism, he pictures a scrawny kid.
The kid is dwarfed by other kids, who have names like cancer and diabetes and are protected by wealthy foundations. And when they need treatment, those kids are swept into the loving arms Canada's health care system.
But not autism.
"Autism is just trying to scream in the air, telling people, 'We need some help here!' and no one's really recognizing it," said Mr. Levy in a telephone interview.
Eugene Levy, with Luke Burrows, 11, right, and Michael Deskin, 12, both of whom are autistic. (Fred Lum/Globe and Mail)
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Today, Mr. Levy will use his Hollywood star power to focus attention on autism by taking aim at the federal government. At a press conference in Toronto, the Hamilton-born actor will join his 12-year-old autistic cousin, Michael, Liberal senator Jim Munson and parents to call on Ottawa to put autism treatment under medicare, just like cancer or diabetes.
A national strategy on autism is critically needed, they say, to lift the burden off of parents who are mortgaging their homes and buckling under debt trying to get treatment for their autistic children.
"We have tried advocacy, we have tried eight years of litigation that went nowhere," says Brenda Deskin, who is Mr. Levy's cousin and Michael's mother.
"We had no choice but to get political. And who better than Eugene Levy to get the message out?"
Today, the number of children diagnosed with autism spectrum disorders is rising and the origins of the neurological disorders remain a puzzle. While there is no cure, applied behavioural analysis, or ABA, is regarded as the best treatment option. But in Canada, coverage varies from province to province in terms of who qualifies for therapy and for how long.
Alberta, for example, pays up to $20,000 worth of treatment costs a year for patients with two areas of documented special needs. The province also provides some assistance for children going through school. Ontario patients are eligible for up to 30 hours a week of ABA treatment, but only for severe cases and wait lists are long, doctors say.
For years, parent groups across Canada have lobbied provincial governments to fund autism treatments; cases have reached the Supreme Court of Canada. Now, frustrated by the differential treatment between provinces, many parents are calling on the federal government to develop a national strategy that would include funding under medicare and would create more training for ABA therapists at Canadian universities.
Those demands will be presented today by parents belonging to the Ontario chapter of Families for Early Autism Treatment, along with Mr. Levy and Mr. Munson.
They have the support of doctors such as Wendy Roberts, the head of the autism research unit at the Hospital for Sick Children in Toronto. She says she has seen parents and even grandparents lose their homes and spend up to $80,000 a year on treatment for autistic children.
"After we make the diagnosis, the next question is, how much money can you spend?" Dr. Roberts said, noting doctors would never be forced to ask that question of a patient diagnosed with cancer.
Gail Geller, a single mother from Toronto, says she feels "survivor's guilt" when she thinks about other Ontario children don't qualify for 30 hours a week of ABA treatment like her son, Adam.
Before beginning the therapy at age 4, Adam couldn't speak or sit still, and only ate crackers. Now, at age 11, he is calmer and loves reading and math. "The first time he ever said 'no' to me, I fell down laughing in delight," Ms. Geller said.
Autism disorders have only recently been recognized as the most common serious developmental condition of childhood, affecting roughly one in 165 children. Experts refer to it as a spectrum because the complex neurological condition can range so widely in severity.
Some people with autism suffer severe cognitive impairment, others are savants. Many battle gastrointestinal problems and show a strong preference for strict routines and repetitive behaviours. But social deficits are its hallmark: impaired communication and the inability to interact with others.
In April, a Supreme Court of Canada ruling effectively closed the door on 28 families who wanted Ontario to pay for the expensive treatment for their autistic children.
The case by the Ontario families was similar to one brought in 2004 on behalf of autism-affected families in British Columbia, in which the Supreme Court suggested that decisions about policies on social programs belong in provincial legislatures and not in the courts.
Having failed to see results in the courts, parents such as Ms. Deskin of Hamilton feel they now have no choice but to pressure Ottawa. Ms. Deskin, who has another son, Noah, 10, called Mr. Levy a month ago and asked if he would join her fight. Mr. Levy, a character-actor best known for his roles in films such as American Pie and A Mighty Wind, studied up on the court cases and medical evidence, and realized his decision was an easy one.
"I started doing homework and realized that this is a good fight here," said Mr. Levy, who yesterday met Michael for the first time. "It's breaking families - the emotional trauma and expense alone."
