Kids are waiting years for autism support in Ontario despite increased funding, experts shed light on why

As April marks National Autism Awareness Month, experts and service providers are continuing to raise concerns about how children with autism are being supported in Ontario.

These concerns come as the province says it is investing nearly $1 billion annually into the Ontario Autism Program through its 2026 budget, A Plan to Protect Ontario. But even with that funding, tens of thousands of children with autism are still waiting for core services. 

This has resulted in frustration among thousands of families across the province, many of whom are left waiting sometimes for years for support. 

To better understand how Ontario got here, and what the delay means, Now Toronto spoke with Marga Vicedo Castello, a professor at the University of Toronto in the Institute for the History and Philosophy of Science and Technology, Terri Hewitt, CEO of service provider and non-profit organization Surrey Place, and Todd Cunningham, a professor at University of Toronto at the Ontario Institute for Studies in Education and a clinical psychologist.

How autism has been understood and changed over time

For Marga Vicedo Castello, part of understanding today’s crisis means looking at the history of autism itself. 

“What we think about autism has changed tremendously over the years, because in many different ways, I mean, from the way we use the word to how we conceive of the condition,” she said.

She explained that when the word “autism” was first introduced in the early 1900s, it was not considered its own condition. Instead, it was used to describe a symptom of a mental illness, schizophrenia.

Over time, that began to shift. By the 1940s, psychiatrists began identifying autism as its own condition, separate from the mental disorder and other cognitive or psychiatric disabilities. 

That shift matters, she added, because the way autism is classified directly shapes who gets care and what kind of care they can access. 

“If it is classified as an illness, as a mental disease, then the access is medical access. If it is classified as a neurodevelopmental condition, in the U.S., for example, children get many more supports because then it’s part of the school system and it is more responsible for providing the support that the child might need to develop well.”

She also said growing diagnosis rates should not automatically be read as proof that autism itself is suddenly more common. Instead, she says the category has widened, stigma has decreased, and recognition has steadily improved. 

“The diagnosis has increased because we’ve opened the category,” she said. “Because we’ve made the category wider, and also because we are sort of seeing more people. There is less stigma.”

Vicedo Castello said awareness alone is not enough.

“We need to move just from knowing that autism exists to making sure we know that racism existed for a long while and sexism existed. That’s not enough. We just have to end racism and sexism, and we need to end also the discrimination of people, you know, who are also different, neurodiverse.”

She said moving toward a more equitable approach to autism means not only understanding its history, but making sure support systems actually reflect that same understanding.

For families, the wait can reshape a child’s future

Terri Hewitt, CEO of Surrey Place, says demand for autism-related services remains high across the organization.

Surrey Place supports people with neurodiversity, intellectual disabilities and sensory-related challenges across the lifespan, from infancy through adulthood. The organization offers a wide range of programs, including funded services, caregiver training, school partnerships and fee-for-service options for families using Ontario Autism Program funding.

“There’s a lot of demand for services. There are wait lists in most of our programs,” Hewitt said.

She said some group programs are easier for families to access, but more intensive behavioural services can take much longer.

“When it comes to more intensive services, behaviourally, particularly, it can take over a year, sometimes, to receive those services because of the increasing demand,” she said.

The same is true for rehabilitation supports like speech-language therapy, occupational therapy and physiotherapy.

“Those kinds of services are hard to access for families, even if you have funding,” she said.

Hewitt says that delay can have a major impact on families’ day-to-day lives, especially when support is needed early.

“The sooner that you can intervene, and the sooner you can put supports in place, the better off any family is. So waiting for a long time for a service is just adding to the complications.”

She said many children only receive quicker support once they reach a point of crisis, when ideally, services should have been in place long before that.

“Really, it’s intervening earlier, that if you can do that, then you could actually resolve or decrease the need for a crisis intervention,” she said.

That early window matters a lot, particularly for children diagnosed between 18 months and four years old.

“Early intervention is critical,” Hewitt said. “There’s so much evidence research that supports how significant the difference is if you can access early intervention from a treatment component when you’re diagnosed.”

But by the time many families finally receive funding, she said, that window has often passed.

“By the time you get your funding, you’re past that window,” she said. “So there’s absolutely outcomes that aren’t the best for families.”

She also says many families are doing whatever they can to bridge the gap on their own.

“Lots of families use up their autism funding. We have families who are definitely paying out of pocket, or are paying with insurance coverage,” Hewitt explained.

At the same time, many others simply do not have that option. Even with the province increasing funding, Hewitt says the wait list remains difficult to shrink because it was already so long to begin with, while diagnoses continue.

“There’s a lot of children who are diagnosed, and so that wait list was really long to start with,” she said. “It’s not like the wait list is getting smaller.”

She added that part of that increase also comes from a growing public understanding of what autism can look like.

“It’s a spectrum. You may not recognize that a young child, particularly a girl, may not get identified until a little bit later.”

For Hewitt, one of the biggest misunderstandings about autism care is the idea that there is one single solution.

“There’s no one solution or one-size-fits-all service,” she said. “Everyone who has autism has different needs and will be looking for different kinds of services.”

She also pointed to another issue that often gets less attention: what happens after children age out of the Ontario Autism Program.

“Autism doesn’t end when you turn 18,” she said.

Delayed care can show up in the classroom too

Todd Cunningham, a professor at the Ontario Institute for Studies in Education at the University of Toronto, says the consequences of long waits are not only felt at home, but also at school.

“For everything we know, because we’re really talking about how brains develop and as brains develop, the architecture the brain goes along from year to year, it gets a little bit more solidified,” he said.

“So early intervention is always the best thing.”

He explained that early skill-building helps children continue developing along that same path. But when those skills are delayed, later learning becomes harder to build.

“If we delay the development of certain skills for years and years and years, then we can’t build the next pieces or learn the next pieces along the kind of developmental routes,” he said.

Cunningham said communication is one of the clearest examples.

“When students don’t have effective ways of being able to communicate their wants or needs, they use other behaviour to try and indicate that they’re frustrated,” he said.

That can lead to schools responding only to the behaviour they see, rather than the unmet need underneath it.

“Behaviour always comes from somewhere,” Cunningham said. “When a child acts up in class, is disruptive in class, dysregulated in class, then that is a sign that something else is going on.”

He says Ontario’s education system often responds with short-term fixes instead of addressing root causes.

“The way that our school systems handle all that is kind of a band-aid solution. We’re not actually trying to build the underlying issues and building up the skill set or understanding of that child.”

Cunningham says more money alone may not be enough to fix the wait-list problem if there are not enough trained professionals and service systems in place to deliver care.

“It’s not just increased money, but do you have good quality facilities to be able to carry out these programs?” he said.

“It takes time.”

He also pointed to the need for more trained psychologists and better support across the system.

“They’re funding just one piece of it. It’s a bigger kind of systematic component.”

Like Hewitt, Cunningham says families are often left trying to figure things out on their own while they wait.

“Parents are desperate; they want the best, and when they don’t know what’s going on and don’t have the services to support them, they will look for stuff,” he said.

Some turn to private care. Others go without. And in many cases, he said, parents and teachers are left without enough support or enough understanding.

“There’s a blame too. When there’s no understanding, parents will either feel like they have failed, they don’t understand something, they might blame the child for behaving in a way that they don’t understand, or why teachers don’t understand.”

For Cunningham, the disconnect between funding announcements and actual access speaks to a broader issue in how society supports children with diverse needs.

“We can always be better in terms of being able to ensure that we have not just funding, but really that funding is being targeted towards really good training and support services to be able to deliver that early care,” he said.

As National Autism Awareness Month continues, all three sources point to the same core issue in different ways: recognition alone is not enough if support remains out of reach.

Now Toronto reached out to the province of Ontario for a comment, and received no response in time of publication.