Autism treatment: A system bursting at the seams

Video: There’s much more awareness of autism, but what support you get depends on where you live and how long the wait lists are. Shirlee Engel reports.

As we researched this autism series, we heard over and over again complaints about long wait times for diagnosis and treatment.

So producer Bryan Mullan and I decided to try to map it out for viewers. How long do you have to wait in each province?

We quickly discovered it’s not that simple.

READ MORE: Autism treatment means months on wait lists, relocation for some Canadian families

Provinces don’t officially track these wait times. Unlike a hip replacement or a transplant list, there is no central database where parents sign up their kids to be assessed and treated.

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Ontario alone is divided into nine different regions, each with their own lead agency that administers Intensive Behaviour Intervention services. I couldn’t even get a ballpark figure from the Ministry of Children and Youth Services.

We started our search with the provincial ministries. Many got back to us with broad statements about the process for diagnosis and treatment, but no concrete information about how long families will be left to wait.

So we tried the experts.

Provincial autism organizations were much more helpful, having done their own homework on the subject. But their same frustration over the lack of information was palpable.

The result – some of our wait times are anecdotal at best.

It depends not only on the province or territory you live in, but whether you’re urban or rural.

“This is a big public health problem,” said Dr. Margaret Clarke, a Calgary-based pediatrician specializing in developmental disabilities. “When a doctor is making a diagnosis that should be entered into a registry. And then, just like hip surgery, and different things we could measure that wait time. We have no ability to do that now.”

We did our best to combine information from several sources into one graphic showing wait times across the country.

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Sadly, the only way around these waits it is to pay for private care, which could cost up to $40,000 a year for younger kids. The cost skyrockets to a whopping $150,000 a year when they get older.

A recent Senate report on the Autism crisis in Canada was titled “Pay Now or Pay Later.” Experts agree early intervention could help dramatically improve an autistic child’s chances as they develop.

But it can also save taxpayers in the long run, since these programs are incredibly expensive.

How do we create a better system if we can’t get a clear picture of the current one?

Tune in this week as we take these questions to the people and politicians with the power to change this.

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