Kitchener-Waterloo

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

Parents of autistic children in Waterloo Region say their own difficulties in trying to get provincial assistance mirror what has been reported by the provincial auditor general.

Ontario auditor general says autism program needs to be re-evaluated

Long waiting lists in Ontario for autism support mean children who need Intensive Behaviour Intervention therapy typically do not start until they are at age seven. Research has shown that the therapy is most beneficial when started before the age of four. (iStockphoto)

A finding by Ontario's auditor general that not enough children with autism are able to access government services is a "good first step" but doesn't address what happens when those children turn 18, says the parent 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 Diane Goedecke in an interview with Craig Norris on The Morning Edition Wednesday. 

Goedecke's 17-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, adding she has to bathe and dress her son and help him eat so he doesn't choke. 

The challenges don't end for Goedecke when her son finishes school. 

Goedecke said 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 this game of ministries about who handles what. As far as I'm concerned, autism is a long-term care issue," said Goedecke.

"Any society takes care of its weakest people." 

Goedecke was speaking the day after Ontario Auditor General Bonnie Lysyk reported 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,” said Lysyk 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 start IBI until 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

Goedecke says 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 in IBI therapy. Instead, Goedecke arranged 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 she’s too high-functioning to go to the specialized autism class, and in order to go to a class for kids who have learning disabilities, she’s 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, said when he heard about the auditor general’s 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.

“There’s dietary interventions that can be done, there’s medical issues that are symptomatic of many, many children with autism that should be dealt with even before an IBI program is contemplated.”

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