Autism battle drains parents
Court case ruling anxiously awaited

`It's been a really, really rough road'

CHRISTIAN COTRONEO
STAFF REPORTER

Brenda and Steven Deskin know the cost of raising an autistic child down to the last cent.

It's $374,266.24 — and rising every day, says Brenda, who's tracked every expense on her computer since their son Michael was diagnosed at age 3. 

That's not including sleepless nights, the constant fear their son will wander outside on his own, and the emotional toll of having to leave Toronto for a less expensive home in Hamilton.

"Really, you watch your life fall apart," Brenda says.

For much of his life, 9-year-old Michael Deskin has been at the heart of a battle with the provincial government over funding for behavioural therapy, which trains parts of the brain to compensate for autism. Although the government pays for therapy, it ends funding at age 6. 

When closing arguments in the Superior Court of Justice begin today, the Deskins will finally be able to anticipate a decision in their five-year-old lawsuit against several provincial ministries.

If the trial judge decides Michael should not be barred from funding based on his age, the decision could cascade down to dozens of other court cases, and more than 160 families appealing to the Ontario Human Rights Commission along similar grounds. More than 1,500 Ontario children have autism.

"We are all holding our breath waiting to see whether that policy is constitutional or not," says Toronto lawyer Steven Klein, who represents several families. "If the court decides that it is constitutional, then for starters, most of these lawsuits are going to go away."

"It's been a really rough road going through this, but they left us no choice," Brenda says. "The lawsuit and the autism and the financial toll has been tremendous. I've all but lost my career over this because I've been so busy fighting for my son and working with my son and doing things that I couldn't afford to pay people to do. That's not supposed to happen in Canada. It's devastating enough to receive a diagnosis like autism."

Autism is a developmental disorder that severely stymies a person's ability to communicate and learn even the most basic things. It can also result in sharp bouts of aggression. 

The provincial government established the Intensive Early Intervention Program in 1999. The idea was that a short, sharp stint of intensive therapy would give children the skills they need to make the transition to public school programs.

Over two or three years, the treatment, called applied behaviour analysis, constantly reinforces a child's behaviour, at a cost of $45,000-$80,000 a year.

Ironically, the program was the result of intensive lobbying by Brenda Deskin and Norrah Whitney, another activist-parent. For her efforts, Deskin received an award from the ministry of citizenship "for outstanding contributions made to your community toward improving the lives of persons with disabilities in the province of Ontario."

That same year, her son was deemed too old for the program's cap.

Government lawyers argue that enrolment in the program is limited to 500 due to cost, and a cap is necessary to accommodate the hundreds of children waiting for a place. 

But families with autistic children say not every child's needs are the same, and by cutting them off at 6 the government sets the stage for a lifetime of expensive therapy, much of it at institutions which will be much more costly in the long run.

Several civil cases have succeeded in obtaining funding, but their eventual disposition depends on the Deskin ruling.