Pandemic Canadian Autism Needs Assessment Survey Results Now Available

Nationwide survey gathering responses from 1,334 Autistic people and caregivers demonstrates continuing and lasting impacts of the COVID-19 Pandemic on Autistic people in Canada.

May 10, 2024 (Toronto, ON) – In partnership with autistic people, caregivers, Autism Speaks Canada, Autism Alliance of Canada, the McMaster Autism Research Team, and with the participation of seventeen provincial, territorial, and other autism-focussed organizations, the 2023 Pandemic Canadian Autism Needs Assessment Survey was conducted to better understand the continuing impacts of the COVID-19 pandemic on autistic adults, caregivers, and their autistic children. A report of the complete survey results is now available. Production of this report was made possible through funding from the Public Health Agency of Canada

The lead author of the report, policy consultant and researcher, Dr. Steve Gentles said, “The results will be helpful in informing the next pandemic response to better address the needs of the autistic community. 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.”      

Four key findings from the survey include the following: 

  1. Changes in access to services and supports were generally accompanied by changes to health. Importantly, worse access meant worsened health.
  2. Remote delivery of many health professional services was more acceptable for meeting autistic adult and caregiver needs, but less acceptable for meeting autistic children’s needs.
  3. Caregivers felt certain or somewhat certain that the COVID-19 pandemic slowed overall child development for two-thirds of the children they reported on.
  4. Autistic caregivers were likely to have experienced the COVID-19 pandemic differently than non-autistic caregivers, in several different ways.

“For nearly two decades, Autism Speaks Canada has advocated for, supported, and stood with autistic people at every stage of their lives. 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 be the drivers of meaningful change,” said Lena Trubnikova, Director of Operations at Autism Speaks Canada.

“Autism Alliance of Canada extends gratitude to the Public Health Agency of Canada for their support of the 2023 Pandemic Canadian Autism Needs Assessment Survey and Report. We thank the Autistic community and their caregivers for their valuable input, as well as our members and partners for their collaborative efforts. Considering the complexities posed by the COVID-19 pandemic, this report has significant potential to inform autism policy and practice in Canada,” said Dr. Jonathan Lai, Executive Director at Autism Alliance of Canada.

“We hope these findings can amplify autistic voices and experiences, and serve as the foundation for dialogue, planning, and action that can work to address the needs autistic people have identified,” said Anna Kata, one of the contributors of the report representing McMaster Autism Research Team. 

The report is available in English and French and is presented in short and long formats. 

About Autism Speaks Canada 

Autism Speaks Canada is a national charity dedicated to creating an inclusive Canada for all individuals with autism throughout their lifespan. They advocate, support, and stand with autistic people at every stage of life. Visit http://www.autismspeaks.ca/ to learn more.

Follow @AutismSpeaksCanada on Facebook, Instagram, LinkedIn and @AutismSpeaksCan on X.