Dr. Jennifer Zwicker (Deputy Scientific Officer, Kids Brain Health Network; Director of Health Policy at the School of Public Policy, University of Calgary; Canada Research Chair in Disability Policy for Children and Youth) and Sarah Ewart (Labour and Employment Lawyer, Forte Workplace Law) moderate a panel discussion with Yvonne Spicer (Ambassador, Autism Canada), alongside KBHN-Autism Alliance of Canada policy fellows; Christiane Roth (Doctoral Student, School of Public Policy, University of Calgary), Dr. Preeti Kar (Postdoctoral Fellow, University of British Columbia) and Alexandra Minuk (Doctoral Student, Faculty of Education, Queen’s University).
Kids Brain Health Network and Autism Alliance of Canada policy fellows analyze human rights-based autism strategies from 13 countries to inform Canada’s National Autism Strategy
Vancouver, BC — May, 11 2023 — The Act respecting a federal framework on autism spectrum disorder, Bill S-203, has become law in Canada. For Autistic Canadians, as well as their families, caregivers and communities, the unanimous support for the Bill in the Senate of Canada and the House of Commons is a long-awaited victory, earned through collective advocacy and action.
Last month, members and partners of the Autism Alliance of Canada gathered on Anishinaabe Algonquin lands in Ottawa, and online, for the 9th Canadian Autism Leadership Summit, contributing to the advancement of a robust National Autism Strategy. To strengthen the collective voice of Autistic Canadians and all those invested in their wellbeing, people with lived experience participated in the Summit, along with representatives from Indigenous nations, service providers, community organizations, researchers, policymakers, and government officials from Canada and abroad.
Among the contributors were a group of policy fellows representing the partnership between Kids Brain Health Network (KBHN) and the Autism Alliance of Canada. Sarah Ewart and Dr. Jennifer Zwicker, Deputy Scientific Officer for KBHN, moderated a panel discussion that included Yvonne Spicer, an ambassador from Autism Canada, and three KBHN-Autism Alliance of Canada policy fellows: Christiane Roth, Dr. Preeti Kar, and Alexandra Minuk.
What Canada can learn from autism policies around the world
The policy fellows analyzed national autism strategies from the 13 countries that have signed on to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Their quantitative and qualitative analysis brought to light many valuable insights for the Canadian context, highlighting the importance of cross-ministerial collaboration between federal, provincial and territorial authorities for health, social services, education, mental health, and inclusion/equity/disability-specific ministries, as well as local governments.
Dr. Deepa Singal, Scientific Director at Autism Alliance of Canada, described the organization’s relationship with Kids Brain Health Network as “an exemplary partnership and powerful example of what can be achieved through collaboration.”
- See the KBHN-Autism Alliance of Canada policy fellow’s presentation slides: English
- Learn more about how KBHN-Autism Alliance of Canada policy fellows have contributed to Canada’s National Autism Strategy.
What Canada’s national autism strategy needs
The KBHN-Autism Alliance of Canada policy fellows identified the following opportunities for a National Autism Strategy, based on feedback from autism policies in UNCRPD countries:
- Awareness-raising through representations of autism in media, and recognition of people’s capabilities and contributions
- Healthcare coverage and senior care, including mobile autism spectrum disorder specialist teams
- Habilitation, rehabilitation, social protection: Supporting people through retirement age and beyond
- Education: Staff training and evidence-based practices, along with individualized academic and social supports, and clear definitions for inclusive education
- Research, statistics and data: More data collection, especially longitudinally throughout the course of individuals’ lives
- Intersectionality: Respecting the development of people’s personalities, and the right to preserve individual identities
- Political participation: Increasing voting and running for public offices
Throughout the Summit, leaders echoed the importance of data collection and clear outcome measures in order to implement change, and to assess and report on impact. Adequate funding throughout the lifespan is also critical for government accountability, and many presenters referenced the importance of shared fiscal responsibility between the federal, provincial and territorial levels in Canada. Discussions during the summit also addressed issues of critical importance, including centering Indigenous perspectives, what Canada’s provinces and territories need from a National Autism Strategy–and many more.
Those attending the Summit also had opportunities to hear first-hand from leaders of national autism strategies in two of the UNCRPD countries, with Dr. Susan Daniels joining from the United States as Acting Health and Human Services National Autism Coordinator at National Institute of Mental Health, and Dr. Alistair de Gaetano, Administrator of the Maltese Government’s Directorate for Disability Issues, and Chairperson of Malta’s Autism Advisory Council.
“Nothing About Us Without Us” principles were demonstrated during the Summit through the inclusion of people with autism, whose voices and lived experiences were valued at all stages of research, programming and advocacy. “People with autism live it every day. We are the ones that can make a difference in many ways,” said Yvonne Spicer. “I’m part of a research panel with another member in this room today. As someone who is learning from not being heard when I was little, to being heard today, I’m very proud and very happy to be here today to actually work on this work together.”
“Nothing about us without us must also apply to Indigenous peoples,” said Bertha Sutherland, Women’s Council Member from the Nishnawbe Aski Nation. During a panel discussion on centering Indigenous perspectives, she encouraged people to ask “Where are Indigenous representatives at this table?”
“It’s amazing to see how much we’ve journeyed through, how much we’ve discussed,” said Dr. Jonathan Lai, Executive Director of the Autism Alliance of Canada at the end of the Summit. “I’m proud to be a part of it.”
We are grateful to our partners at the Autism Alliance of Canada for their nationwide leadership in developing a shared policy agenda, and accelerating systems and policy research,” said Nicky Lewis, CEO of KBHN. “Events such as the Canadian Autism Leadership Summit help facilitate collective impact for the benefit of Canadians with autism throughout their lives – along with their families, caregivers, and communities. Our organizations’ policy fellows will continue their vital work to inform Autism policy in Canada and internationally.”
