Pandemic's impact on autism services linked to health decline, survey finds

New report highlights growing concerns for this particular population

Pandemic's impact on autism services linked to health decline, survey finds

A new report detailing the continuing impacts of the COVID-19 pandemic on autistic individuals, caregivers, and their children in Canada has been published. The 2023 Pandemic Canadian Autism Needs Assessment Survey was conducted through a partnership involving autistic individuals, caregivers, Autism Speaks Canada, Autism Alliance of Canada, the McMaster Autism Research Team, and 17 other autism-focused organizations. Funding from the Public Health Agency of Canada made the production of this report possible.

The lead author, policy consultant and researcher Dr. Steve Gentles, highlighted the importance of the findings. “The results will be helpful in informing the next pandemic response to better address the needs of the autistic community,” he said. “We are thankful to all the organizations for coming together to share this survey widely across Canada. The report provides concrete considerations for improving supports and services for autistic adults, caregivers, and their autistic children.”

What did the report find notable?

A primary revelation of the survey was the direct correlation between changes in access to services and the overall health of autistic individuals and their caregivers, according to the Canadian Press. As access to services and supports declined, health outcomes worsened.

The survey identified four key findings:

  • Changes in access to services and supports were generally accompanied by changes in health, with worse access correlating with worsened health.
  • Remote delivery of many health professional services was more acceptable for meeting the needs of autistic adults and caregivers, but less so for autistic children.
  • Caregivers reported that the pandemic slowed overall child development for two-thirds of the children.
  • Autistic caregivers experienced the pandemic differently than non-autistic caregivers.

Lena Trubnikova, director of operations at Autism Speaks Canada, highlighted the ongoing commitment of their collaborative efforts to supporting autistic individuals. “We are proud of this collaborative survey and report and look forward to working with the Public Health Agency of Canada and community partners to drive meaningful change,” she said.

Dr. Jonathan Lai, executive director at Autism Alliance of Canada, acknowledged the Public Health Agency of Canada’s support and the potential of the survey findings to inform autism policy and practice in Canada. “ Considering the complexities posed by the COVID-19 pandemic, this report has significant potential to inform autism policy and practice in Canada,” he noted.

Anna Kata from the McMaster Autism Research Team noted the importance of amplifying autistic voices and experiences through the report’s findings.

The survey included responses from 448 autistic adults and 1,082 caregivers of autistic children. Among the caregivers, 196 identified as both autistic adults and caregivers. The caregivers reported on 975 autistic children, with nearly a quarter of these children being adults (23% were 18+ years).