Kids could have shorter wait times for autism diagnoses in Ontario, study suggests

Children in Ontario should not have to wait so long for an autism diagnosis, especially since earlier detection can lead to better outcomes, according to the authors of a new report.

Kids who show signs of autism can wait several months or even years to be officially diagnosed, according to Dr. Melanie Penner, a senior clinician scientist and developmental pediatrician at Toronto's Holland Bloorview Rehabilitation Hospital. Those long wait times can have a detrimental impact on the children involved, she told CBC Toronto. 

"We know that the early years are really important for brain development. They're a really important time for … learning communication skills, learning about social interaction and play," Penner said.

"And so, those are the years when we really want to provide children with access to that specialized instruction that can help them with some of those areas."

Penner and her colleagues recently published a new report that she hopes will help cut down on some of these wait times. The report found that general pediatricians were able to accurately diagnose autism in children 90 per cent of the time. 

Children who show signs of autism are typically sent to a sub-specialist after being assessed by their pediatrician, Penner said. However, there's a backlog of cases requiring an assessment because the number of sub-specialists in the province is relatively small.

The report's findings suggest in many cases, a pediatrician's diagnosis should be enough to start children on a treatment plan, rather than having to wait months or years for a second opinion.

To reach its findings, Penner's team enrolled 17 general pediatricians from all across Ontario. Those physicians assessed 106 children under five-and-a-half years old who exhibited developmental concerns but who had no official diagnosis. Within four weeks, the same group of children was also assessed independently by a team of autism specialists. The results were compared to reach the final findings.

Further assessment for those not diagnosed

"However, the second part of this is that if a pediatrician or other doctor doesn't think autism is present, we want them to be a bit cautious in making that determination," Penner said. 

The report found that in cases where the pediatrician did not make a diagnosis of autism, the specialist team only agreed 60 per cent of the time. 

In such cases, Penner cautioned, if a child has exhibited some features of autism, "those are the kids for whom a further assessment might be needed in order to come to that diagnostic conclusion."

Stephanie Ridley, of Burlington, Ont., the mother of an 11-year-old with autism named Ewan, told CBC Toronto she welcomes any opportunity for an early diagnosis. 

"It doesn't take a rocket scientist to figure out that an earlier diagnosis is better ... just so that you can get on the right path," she said.

Ridley said Ewan was lucky because he was diagnosed before he was two years old, but she's spoken to a number of other parents who have had to wait much longer. 

She said she's more concerned about the wait times families face trying to access services like applied behavioral analysis and other therapies after an autism diagnosis. According to Ripley and other experts, those wait times can last up to six or seven years.

"There's no point in an early diagnosis if kids are waiting for years to access services in this province," she said. 

She blames the current provincial government for these delays, pointing to an Ontario Autism Coalition campaign from last year that outlined how the number of children waiting for autism services in the province has doubled under Premier Doug Ford's Progressive Conservatives.

"This government has continually failed kids in this province," Ridley said, calling for an overhaul of the system to better focus on the individual needs of each child and family. 

Province doubled program funding

In an email statement addressed to CBC Toronto, the Ministry of Children, Community and Social Services noted that the provincial government doubled its investment in the Ontario Autism Program to $600 million annually.

The statement also said the program provides, "multiple pathways to services and interventions, including core clinical services, urgent response services, caregiver-mediated early years programs and foundational family services, to support the individual needs of children and youth on the autism spectrum and their families."

Tracie Lindblad, a subject matter expert and speech-language pathologist at Autism Ontario, told CBC Toronto the report's findings could indeed lead to shorter diagnosis wait times, especially in rural and northern locales where patients wait even longer to see specialists.

She noted that wait times have also increased due in part to the pandemic and agreed that more needs to be done about wait times for other services.

"I have daily calls from people looking for a speech pathologist, for services," Lindblad said. "It's frustrating for parents to get a diagnosis early and then have no ability to get services or very reduced ability."

She said she also hears stories regularly about families mortgaging or selling their homes to try to pay for private services to help their children in a timely manner.

But she also said there are other paths outside provincial funding, such as putting putting pressure on insurance companies to expand protection, which happened in the U.S.

"Some private unions and different places have now added to their insurance packages for their staff, for their employees," Lindblad said. 

"So that helps families."