One of the first things Deny Soto was told after her son was diagnosed with autism was “get on the list.”
The Toronto mom didn’t really know what she was signing up for in 2022, but she listened. Now, four years later, her nine-year-old son Nico Tsirigotis is still on that list waiting for government funding for core autism services. Those services can include occupational therapy or applied behaviour analysis.
“It’s just sad, because that was a critical part of his development,” said Soto.
“We lost any support that we could have gotten during that time. So we’ve navigated it on our own, we found alternatives … but I won’t know what we’ve missed.”
Nico is one of more than 67,500 children with autism across the province waiting to access funding for core clinical services through the Ontario Autism Program, according to government records obtained through a freedom of information (FOI) request.
CBC News reviewed more than a year of bi-weekly progress reports for the program from late June 2024 through early January of this year. The documents show the total number of children registered and seeking funding for core services, and how many of those kids actually have access to that funding for services like speech-language pathology and occupational therapy.
Despite increases to provincial funding in recent years, the percentage of Ontario children with autism registered with the program and receiving funding had yet to crack 25 per cent as of the Jan. 7 progress report — as demand for the funding continues to grow.
The number of children registered has jumped 21 per cent since mid-2024 to 88,175 kids this January. Only 20,666 of those children have a funding agreement for services.
Last year, a survey conducted by the Ontario Autism Coalition found that parents were on the wait list for at least five years before receiving funding. Practically, the advocacy group’s president says that means many parents miss out on early intervention.
“The first thing they tell you when your child is diagnosed is that early intervention is key,” said Alina Cameron, president of the Ontario Autism Coalition.
“You wait 5.2 years for access to something that is ongoing and consistent … you missed the entire early developmental window.”
Cameron’s daughter Fiona, 10, was registered in the program in 2017 and was on the wait list for five years. She’s now had access to funding for three years.
“It has been an absolute game changer,” said Cameron, who lives in Thunder Bay, Ont.
“We saw immediate changes … she started retaining information, and now we’re seeing speech development, and it’s all on her own time, but she’s just like a totally new kid instead of standing in the middle of the kitchen having a meltdown because she can’t tell us what she wants and we don’t understand her.”
Cameron doesn’t think children with autism should have to wait years for funding for the support they need.
Last week the Ontario government announced $186 million in new funding for the Ontario Autism Program as part of the province’s yearly budget. Those additional funds bring the annual funding up to $965 million, which the budget says will “enable more children and youth to access core clinical services.”
In a statement, the Ministry of Children, Community and Social Services told CBC News that under their government the number of kids in core clinical services has tripled. The ministry also said some resources like foundational family services, urgent response services, caregiver mediated early years programs, and the entry to school program, are accessible for all families registered in the Ontario Autism Program.
Cameron says her organization appreciates the funding increase, but she worries it’s not enough, and wants the province to commit to providing all of the new funding to families for core clinical services.
“Last year’s increase didn’t move the needle on the core wait list at all,” she said.
Spencer Carroll’s six-year-old son was diagnosed with autism when he was 14 months old. The Ottawa dad and his wife have been paying for core services as they wait for government funding. This September, he says they’ll have been on the wait list for five years.
“We’re probably approaching about $100,000 out of pocket for private services and we’re some of the few lucky, that can afford it,” said Carroll.
While navigating the system, Carroll saw a gap in comprehensive resources for parents and with his tech background created the website End the Wait Ontario, which brings together resources and data he’s obtained on the Ontario Autism Program through his own FOI requests. But even still, he says it’s impossible to get a full picture of how the program is being run.
“We need to know where the wait list sits, we need to know how many kids are getting diagnosed with the backlog for these diagnostic centres … we also need to know where the funding is going to,” said Carroll.
“Only through accountability can we see whether or not these funds are being deployed responsibly and know whether they’re effective or not.”
At the moment, much of the available information comes from filing FOI requests for the progress reports CBC News obtained for the last year and a half.
In that time, there were half a dozen updates where the number of kids receiving funding dipped despite hundreds more children registering with the program in that same two-week period. For example, last summer there was a period where the number of children with an active funding agreement dropped by 151 kids, despite 456 more children registering with the program.
CBC News asked the ministry why there are periods of time where the number of kids receiving funding for services goes down, but their statement did not address the issue.
Cameron attributes the drop to kids aging out of the program and the province not processing children waiting for funding quickly enough to keep their numbers up.
“Less than a quarter of kids who are registered at any one time have access to that fundamental program — that is very troubling,” she said.
Soto hopes when her son Nico eventually gets access to funding it will help make his world a little less lonesome.
“He does things on his own so often because we don’t have other options,” said Soto.
“So for me, it’s just opening up a whole new world for him.”
