Ontario children and teens with autism faced long waits, education loss in 1st year of pandemic, report finds

Breanna Touhey of Kitchener, Ont., says she was supported by the local community immediately after her son was diagnosed with autism in October 2020.

Touhey, a special education resource teacher, knew to register her son in the Ontario Autism Program, which provides families with funding to access therapy. But she also knew it would be a bit of a wait.

However, after joining the Ontario Autism Coalition Facebook group, she learned through the discussions that parents who had applied for funding after she had put in her application were already getting the money. So she became frustrated.

"I am an incredibly tenacious person and when it comes to my kids, there was just like no stopping me."

Touhey emailed her member of provincial parliament and asked questions. A short time later, the funding arrived.

But she remains concerned about the families still facing long wait lists.

"It's just knowing where to look at, knowing who to talk to and knowing how to push to get your kid what they need. But the part about it that doesn't feel fair is that you always feel like you have to be doing that. You always feel like you have to be fighting," she said. 

"What about the families who aren't able to get to be the squeaky wheel and don't have that support to keep pushing? How long would we have waited? That's been hard, I would say, is just seeing the inequality of what some people get when they get diagnosed."

Many parents felt the province didn't support children's needs for therapy enough during the first year of the pandemic, according to a new report from the Laurier Autism Research Consortium at Wilfrid Laurier University in Waterloo.

The "Families in Flux" report includes the experiences of 2,685 caregivers who were recruited through emails and newsletters to take the survey in July 2021.

When asked to expand on their concerns with the Ontario Autism Program over the previous 12 months, parents and caregivers reported wait times or delays in receiving funding were second to COVID-19-related disruptions.

The report found 53 per cent of respondents said the program funding they received met their child's therapy and support needs "to a low extent or not at all." 

Forty-seven per cent of respondents said they did not receive even an hour of therapy funded by the provincial program. 

Janet McLaughlin, a Wilfird Laurier University associate professor in community health and co-director of the Laurier Autism Research Consortium, which was involved in "Families in Flux," said the goal of the report was to update the findings of a 2019 survey.