Autism should be treated as 'long-term care' issue: parent

A finding by Ontario's auditor general thatnot enough children with autismare able to access government services is a "good first step" but doesn't address what happens when those children turn 18, says theparent of a Waterloo teen with autism.

"Accountability is what matters. Because when you start to measure something, you start to make people accountable to answer for that measurement," said DianeGoedeckein an interview with Craig Norris onThe Morning EditionWednesday.

Goedecke's17-year-old son is severely autistic, and has the approximate cognitive ability of a three-year-old.

"People don't realize what it's like to get through a day in the life with a child that has severe autism," she said, addingshehas to bathe and dress her son andhelp him eat so he doesn't choke.

The challenges don't end forGoedeckewhen her son finishes school.

Goedeckesaid she has been trying to get her son into adult support programs but says "everybody I've been meeting with tells me there's nothing there for him."

"There's thisgame of ministries about who handles what. As far as I'm concerned, autism is a long-term care issue,"saidGoedecke.

"Any society takes care of its weakest people."

Goedecke was speaking the day after Ontario Auditor General BonnieLysykreported that although the province has quadrupled autism funding over the last decade, there are still more children waiting for government-funded services than there are children receiving them.

"We think they need to re-evaluate the program, saidLysyk on Tuesday.

There is research saying that for Intensive Behaviour Intervention treatment (IBI), children should be getting the treatment younger than they're getting it in Ontario."

Currently, many Ontario children with autism do not startIBIuntil almost age seven. Research has shown that children who start the treatment before age four have better results than those who start later.

Parents find lack of access frustrating

Goedeckesays part of the problem is that children with severe autism are lumped together with children that have slight learning disabilities.

Her son is so severely autistic he couldn't cognitively participate inIBI therapy. Instead, Goedeckearranged for an assessment of her son, so she could give his school guidance on what to work on with him.

"They're not clinicians. The schools are being put in positions of being clinicians, they're not."

Kitchener resident Cheryl Boer says she has not received any help from the school board for her 12-year-old autistic daughter.

We were told that she is their highest-needs student right now at the school, so mainstream schooling may not be an option for her, said Boer.

But shes too high-functioning to go to the specialized autism class, and in order to go to a class for kids who have learning disabilities, shes not independent enough to go there.

Boer added she would like to see the Community Care Access Centre take over responsibility for administering autism services.

Alternative treatment methods available

Don Blaine, the chair of Autism Canada, saidwhen he heard about the auditor generals findings on autism funding, he was not surprised at all.

There was a huge backlog before, and even if the funding has quadrupled, the rates of autism have doubled in that time period, said Blaine.

Blaine also says one solution the government should consider is to look at alternatives to Intensive Behaviour Therapy.

Theres dietary interventions that can be done, theres medical issues that are symptomatic of many, many children with autism thatshould be dealt with even before an IBI program is contemplated.