Ontario Autism Program needs a complete rethink,
As a mom to four kids, two with autism spectrum disorder, I know firsthand how difficult the days can be — desperately trying to support children with special needs, struggling to get through the next minute, hour or day; worrying about your child’s future.
Will they ever graduate from high school? Will they ever find a job? Will they be able to express their feelings, have a friend to eat lunch with, or articulate how their day went? Will they ever be happy? It’s been seven years since we found out our son, Kenner, has autism.
Still, when I think back to that day, I can’t stop myself from crying. It was gut-wrenching.
Months prior he’d gone for a secondary screening with a local doctor. Not once did that doctor mention autism.
Then one day, out of the blue, a letter arrived confirming his diagnoses. No notes enclosed. No phone call. We were blindsided and had no idea where to turn next.
Like many families do when faced with this diagnosis, we spent innumerable sleepless nights worrying. How could we help a child who would scream for hours because he couldn’t tell us that he was hungry, thirsty, or express what he needed?
Hundreds of hours of appointments followed. We spent tens of thousands of dollars for autism behavioural services before and after he went through the previous government-funded therapy program.
Eventually, through the hard work of many therapists, Kenner progressed from a vocabulary of a few difficult-tounderstand words to a kid who still struggles to express his feelings and emotions but talks non-stop.
I wish I could say that our provincial system has made similar remarkable progress, but it hasn’t.
Instead, the Ontario Autism Program has become one huge wait-list. Of the nearly 32,000 children currently registered, almost three-quarters are waitlisted and most have been waiting for more than two years! That simply isn’t fair.
In my role as a parliamentary assistant, I’ve recently had the opportunity to host round tables across the province and hear from parents of children with autism. I met with families in Cambridge, Kitchener/Waterloo, Windsor, Ottawa, Kingston, London, Newmarket, Niagara, Whitby and Oshawa.
The stories they shared are heartbreaking. Parents have had to leave their jobs to support their child. Many were overcome with emotion just talking about their daily struggles to find help and their extreme stress and anxiety. Most of the families I spoke with just don’t understand why a small number of children get service, while the majority are on wait-lists.
And, there are in fact multiple waitlists. There’s a wait-list to receive a diagnosis, a wait-list to access provincial funding and another for private providers.
All this waiting is adding to their stress and keeping children from accessing much-needed therapy.
Our government has collected feedback from families across the province. We must take this into account as we look at fixing this broken system. It is unacceptable to have the majority of children on wait-lists, and we must look at how to get them much needed support.
Early diagnosis will be one of our key areas of focus. Studies show that early behavioural intervention can have life- changing outcomes. A U.S. study shows early diagnosis and intervention can reduce lifetime costs for people with autism by two-thirds, and most importantly — help them have the best quality of life.
We need to respect families. We need to work to clear these wait-lists and put the decision-making back in the hands of parents. We need to get the youngest children into autism services as soon as possible. This is why our government is working to revamp Ontario’s autism supports. We’re going to put families in control, and bring equity to a broken system.
I know firsthand how devastating it is to watch your child languish on waitlists. I know what it’s like to have your child curl up into a ball and scream, trying desperately to tell you what’s wrong.
It’s why I fought for better autism services long before I ever decided to run as an MPP. It’s what drives me to get help to more families faster. And, it’s why I am working to achieve the best possible outcomes for children with autism.