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

Researchers at Ontario's Wilfrid Laurier University who surveyed over 2,600 parents and caregivers of children with autism found long wait times for funding and therapy, and significant education loss in the switch to remote learning. "It felt like the hardest challenge of my life,' says one of the researchers who also supports a son with autism.

'It felt like the hardest challenge of my life,' parent and researcher says of life during COVID-19

Breanna Touhey, shown with her husband and children, says her son James was diagnosed with autism in October 2020, and when they didn't receive funding from the Ontario Autism Program, she emailed her MPP. They received the funds, but she worries about families who aren't able to advocate for themselves and are still waiting for funding. (Nada Ramy Photography)

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."

Report details feelings of parents, caregivers

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. 

Life was 'a real roller-coaster'

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.

McLaughlin, who supports a son with autism, described her personal experience during the pandemic as "a real roller-coaster."

"It felt like the hardest challenge of my life. And every day I woke up just thinking I have to get through today and hopefully things will get better tomorrow."

Wilfrid Laurier University researcher Janet McLaughlin supports her son, Sebastian, who has autism. She says that for many, including her son, access to in-person education was disrupted during the pandemic. (Submitted by Janet McLaughlin)

The advocacy group Autism Ontario says the neuro-developmental disorder impacts how a person communicates and relates to people and the world around them. There is no cure, but therapies can improve the symptoms and experiences of many with autism. The group says it's estimated up to two per cent of the Canadian population, including about 135,000 people in Ontario, are on the autism spectrum.

For many, including her own son, McLaughlin said access to in-person education was disrupted when school was shifted to remote learning during the pandemic.

"Many of the students, for example, were sent home because they didn't have proper supports to support their autism related needs on top of COVID," she said. 

"And for many children on the spectrum, they weren't able to learn remotely. And so this actually amounted to pure education loss."

When it came to online learning, the survey found:

  • Seven per cent of caregivers reported their child was not at all engaged.
  • 50 per cent reported their child was poorly engaged.
  • 29 per cent reported their child was moderately engaged.
  • 14 per cent reported their child was well engaged.

McLaughlin noted the survey also found 26 per cent of children with autism missed 21 weeks or more of school, either due to COVID-19 or other restrictions. 

"I think the thing that surprised me most was the sheer amount of education loss," she said.

Lack of consistency a problem

That was the experience of Kerry Monaghan, who has two children with autism. The Ottawa mom's son was often eligible to be in school with his assigned worker, but her daughter wasn't.

Monaghan said there was a disconnect between when the province would make an announcement and whether her school would allow her son to attend.

"What we saw happen was with each shutdown, it was approached differently. With each shutdown, we never knew right away. There were scenarios where some kids were allowed to go and others weren't.

Sometimes it would be more than a week before anyone could answer her questions.

While in flux, she said, she had to monitor her children, and at times, she begged her self-employed husband to take time off work.

"The amount of ups and downs, and unknowns and chasing answers created just so much chaos." 

Kerry Monaghan, shown with six-year-old Charlotte, nine-year-old Jack and husband Patrick, left to right, says there have been many ups and downs when it came to meeting the education needs of her two children, who have autism, during the pandemic. (Elizabeth Fulton Photography, Ottawa)

A spokesperson for Education Minister Stephen Lecce said the province has worked to strengthen supports and professional development opportunities for educators, "including more than doubling funding to over $40 million to support students with autism in the classroom." 

As well, in "exceptional cases" students with special education needs who couldn't learn from home were permitted to be in school.

Pre-pandemic problems

Toronto mother Angela Brandt agreed the pandemic has been stressful, but said for many across the province, the anxiety about accessing programs began before COVID-19 hit.

Brandt, whose 16-year-old son has autism, is president of the Ontario Autism Coalition.

She said the previous Liberal government had developed a "fairly decent" needs-based plan, which the Progressive Conservatives "decided to bulldoze" when they were elected in 2018.

Angela Brandt, president of the Ontario Autism Coalition, was at Queen's Park on Monday, and spoke about how many families supporting children with autism have faced long wait times for funding and therapy. (Submitted by Angela Brandt)

Under the new program introduced by the province in 2019, children aged five and under would receive $20,000 for therapy, and those six and older would receive a $5,000 subsidy. 

Her son's program was about $90,000 a year.

"So $5,000 is a drop in the bucket," Brandt said.

She said she doesn't see any desire by the provincial government to make changes.

"They've abandoned us. We feel abandoned. We, like the community, just feel like this government is heartless and callous. And frankly, I don't know how they sleep at night."

Province says it's making 'positive progress'

During question period on Monday, in response to questions about whether the Ontario Autism Program was meeting families' needs, Minister of Children, Community and Social Services Merrilee Fullerton said 40,000 children in the province are receiving support.

She also said the government has doubled the budget for the program to $600 million a year.

Krystle Caputo, a spokesperson for Fullerton, said in an email that the province is "making positive progress, and remain(s) on target to launch the independent intake organization this spring and bring 8,000 children into core clinical services by the fall." 

The intake organization will be called AccessOAP and families will receive information about it this month.

Access needs to be equitable, advocate says

Margaret Spoelstra, executive director of Autism Ontario, said the survey from Laurier researchers echoed what her advocacy group has heard from families.

She said government ministries — such as health, education and children — need to align to help people.

"We do have families who have good experiences, but that is not the case equally across the province of Ontario," she said. "That shouldn't be so. It should be that no matter where you are in Ontario, you have access to supports to help your child grow and learn."

McLaughlin said she hopes the report will inform provincial autism policy going forward.

"We have an election coming up [June 2] and I do hope that with everything else going on, autism and disability services generally can make that election agenda

She also hopes the report helps other parents and caregivers see they weren't alone in their experiences during the pandemic.

Touhey said she wants to see a return to full in-person appointments for children. She also wants the province to focus on the long wait times.

"When you are a family and you're in crisis, whether it's behaviour or whatever it is, that wait is excruciating," she said, adding her son is now in a pilot program to prepare him for school.

"I love being part of it," she said. "I think that this is a great step forward. I wish that every child needing it could have access to it."