Wait list for autism assessment up nearly 3,000 kids in three years

EDITOR’S NOTE: This article originally appeared on The Trillium, a new Village Media website devoted exclusively to covering provincial politics at Queen’s Park.

More than 6,000 children were waiting for autism assessments at the province's five diagnostic hubs at the end of the last fiscal year — marking an increase of more than 2,800 children in three years — new records show. 

Data obtained by The Trillium through a freedom-of-information request shows that the number of children waiting for an autism assessment at any of the province's five diagnostic hubs increased from 3,282 at the end of the 2019-20 fiscal year to 6,113 children by the end of 2022-23. The increase in the last of those three years was more than 1,600 children.

In those same years, the number of assessments completed across the five hubs rose from 2,434 in 2019-20 to 4,167 in 2022-23. 

While the government has increased funding to the hubs in recent years, the head of an autism advocacy group says these numbers are a concern and that they don't capture the larger number of children throughout Ontario who are actually waiting to be assessed for autism. 

The province has five diagnostic hubs for autism assessments that receive provincial funding. They include McMaster Children’s Hospital/Ron Joyce Children’s Health Centre (Western Ontario), the Children’s Treatment Network of Simcoe York (Central Ontario), Child and Community Resources (Northern Ontario), CHEO (Eastern Ontario) and Holland Bloorview Kids Rehabilitation Hospital (Toronto).

There is variation between the hubs, with the two that completed the most assessments in the last three years — Children’s Treatment Network of Simcoe York and CHEO — also having the largest wait lists. The two hubs completed 1,422 and 1,117 assessments, respectively, in the 2022-23 fiscal year, with 1,857 and 1,875 children waiting for assessments at each hub by the end of that year.

*Data reported to the ministry as of March 31, in each fiscal year
**The ministry does not have data related to the number of children waiting for assessment in 2018/19

Alina Cameron, president of the Ontario Autism Coalition (OAC) advocacy group, said the increase in the number of children waiting for assessments at the five hubs, particularly between 2021-22 and 2022-23, could be partly due to people looking for diagnostic services after reduced access during the pandemic.

Additionally, she said many kids were "left unidentified" during the pandemic because they spent their preschool or senior kindergarten years at home or were learning online.  

"Now they're in school, teachers are going ... these kids are high needs and they require an assessment, so a lot of those kids are getting found now and being sent for assessments," she said. 

But she said the numbers are a "low estimate." 

"It cannot be used to extrapolate what the current waitlist is for autism diagnosis in Ontario, because it's a mess — it's all over the place," Cameron said, adding that the diagnostic hub numbers are more reflective of the capacity of the hubs. 

Faced with long wait times for publicly-funded assessments, some families have started turning to private providers, with assessments costing a few thousand dollars, she said. 

"Given the opportunity to access public services, absolutely they would, but they're desperate, right, so they're trying to access whatever they can whenever they can," she said.

In some areas, she said, family doctors and pediatricians have stepped in to provide a diagnosis after some training so that families can at least register for the Ontario Autism Program (OAP), which, depending on the services needed, could result in more waiting. The Trillium previously reported that by the end of 2023, just one-in-five children registered for the province's autism program had been given funding for core therapy — a cornerstone of the program. 

If a family can't access any of the diagnostic services in a timely manner, then "they're just existing without a diagnosis and then that kid will end up in school and then all kinds of problems arise because school's not ready and the child hasn't been identified and it just snowballs from there," Cameron said. 

This is problematic, she added, because the first five years of a child's development are crucial. 

"If you're spending that time on a waitlist, you're wasting precious time that that child can't get back and you're going to affect the child's trajectory in life," Cameron added. 

She said that wait times for accessing assessments have been a longstanding issue. 

"(The hubs are) working hard, but they're not supported by the province in a way that they can meet the need of every child in Ontario who needs that, it's impossible," she said. "I don't think the government's ever ever funded them accurately ... there's always been a wait, and there's always been people expressing their frustration with trying to access the service."

Though the Ford government has increased funding to the hubs, the waitlist for assessments appears to have ballooned despite a promise years ago to eliminate it. 

The Ford government announced its first major overhaul to the province's autism program in February 2019 resulting in widespread protests from families and the province agreeing to go back to the drawing board and create a new program. As part of the 2019 announcement, the province doubled funding to the diagnostic hubs to total $5.5 million, noting that there were 2,400 children waiting for assessments through the hubs and that the average wait time was 31 weeks.

Lisa MacLeod, then the minister of children, community and social services, said in a social media post at the time that the government would "clear the diagnostic & support waitlists in 18 mos, empower families to choose services, double investments at diagnostic hubs & increase oversight of clinicians."

A little over a year later, the waitlist had grown to 3,282 children. 

Cameron said more funding is part of the solution, but so is increasing the workforce capacity.

"You can't just rely on the same small pool of people to do more work, we need more professionals who are adept at doing this type of work," she said. "There's a whole team put together to help families through this process because it is tricky, it's not a simple blood draw."

The reports that come out of assessments at the diagnostic hubs are important in helping families develop a plan, she said, as they help identify whether a child requires speech or occupational therapy, or whether behaviour interventions are needed. 

"Prescription pad diagnoses are great, people get that that OAP number and they get on the wait ist ... but having those hubs put together those reports is really helpful," she said. 

The Trillium requested interviews with representatives from each of the five hubs. None granted one, but three did provide written statements before publication. 

Sherry Fournier, executive director of Child & Community Resources, said they work with various organizations, doctors, nurse practitioners and registered health care professionals to provide assessments in the province's northern region, which includes training to boost capacity and establishing local diagnostic services in different districts. 

"All partners work to ensure families have access to these important services in their home community. Despite our efforts, waitlists continue to grow," Fournier wrote in an email, adding that the ministry has provided additional funding and that she hopes this will continue.

"Accessing quality diagnostic services early ensures the child and family can register for the Ontario Autism Program, participate in the vital early years services prior to entering school, are eligible to receive core services and engage in family foundational service up to the age of 18," she said. 

The Children’s Treatment Network said there are various factors that contribute to the increased referrals and kids waiting for assessments and that the organization works with the government to "monitor demand and provide autism diagnostic assessments to as many kids and youth as possible."

The CTN said it also focuses on trying to build capacity so that families can also access assessments from other health care providers, for example. 

Holland Bloorview Kids Rehabilitation Hospital said in a statement that the rate of referrals from the community has "remained high," but that the hospital supports families while they wait. 

"For example, we are modifying assessment pathways to ensure we are getting the right services to children based on their age and individual circumstances," the statement said. "Through our ECHO Ontario Autism program, Holland Bloorview also continues to build the capacity of community clinicians to diagnose autism in children and youth."

For its part, the government has tripled funding to the hubs since taking office, with current annual funding sitting at more than $9.6 million, said Patrick Bissett, spokesperson for Minister of Children, Community and Social Services Michael Parsa.

Bissett said that in addition to the hubs, families can access diagnostic services from various professionals with specialized training, including doctors, psychologists and psychological associates, and nurse practitioners.

"Demand for diagnostic assessments continues to increase across each of the five ASD diagnostic hubs. Last year, diagnostic hubs completed almost three times more assessments than they did in 2018/19," Bissett said. "The ministry also invests in capacity-building initiatives to ensure children are identified early, especially in areas of the province where the average age of diagnosis remains high due to limited access to qualified diagnosticians."