Note: While there are many areas of inequity, this article will focus on diagnosis and support services as seen by the Autistic writer living in Ontario, Canada.
Autism in Canada
One in 66 Canadians is autistic. Collectively, we face numerous challenges to accessing services and supports, including long waiting lists and fragmented, inconsistent interprovincial services and funding. Each of Canada’s 10 provinces and 3 territories chooses how it funds autism-related support services, and approaches vary across the country.
This is problematic in a nation in which roughly 23% of citizens are foreign-born. 8.3 million people represent a mix of languages, cultures, and religions. The lack of a dedicated autism strategy for Canadians to address inequities and complex ASD issues disadvantages all Autistic Canadians (Evans, 2013).
Autism itself, is not a disease. However, “Autistic people have a range of comorbidities resulting in a high use of health services. Doctors of nearly all specialties are likely to encounter autistic people in their practice” (Gallager et al., 2023). MDs most conversant with Autism Spectrum Disorder tend to be Pediatricians and Psychiatrists. Primary Care Providers express greater discomfort in diagnosing and treating AS conditions (Davin et al., 2022). “Factors such as limited focus on ASD in medical school and professional trainings or workshops, as well as difficulties accessing resources or information about providing services to individuals with ASD, hinder their ability to provide care to individuals with [Autism]” (Ghaderi & Watson, 2019).
Equitable access to school and community supports is inconsistent, compromising early intervention for those living in remote, rural communities – effectively two-thirds of Canadians. Northern regions lag behind national and provincial averages in quality of health and health care. Northern populations are more likely to experience poor health, have difficulty accessing health care, and die younger. These inequities are intensified in First Nations, Métis, and Inuit peoples, as well as the francophone (French-speaking) population (Health Equity in Northern Ontario – Health Quality Ontario (HQO), n.d.).
There are few affordable options for adult assessment. According to Jamie Santana, an Autism therapist and Advocate, “You have to look at the full stage of life, you can’t just look at under five, then youth and then forget about them when [they’re] older” (Dhanraj, 2018).
Autism Strategy for Canadians: Canada’s National Autism Strategy (NAS)
20 years ago, the state of autism in Canada was already a public concern. Individuals and organizations were calling upon the federal government to exercise a leadership role to ensure that ASD treatment and support were consistent across all environments and jurisdictions (Provost, 2011).
The intent behind the NAS is to encourage a unified approach, ensure consistency in the services provided between provinces/territories, promote best practices, and address support gaps.
According to a press release from the Canadian government, “The [Autism] Network will work as an independent body to bring together autism organizations and partners, including individuals with lived…experience, to share their skills, knowledge, and resources to support key…priorities and provide a forum for ongoing engagement of Autistic communities on federal policies and programs” (Autism Explained: History of Autism, n.d.).
The NAS promises implementation of its key goals by 2025 (A Blueprint and a Roadmap for National Autism Strategy, 2020):
- Affordability and access
- Information
- Employment
- Housing and
- Research
Outcomes and Expectations
A successful “NAS should be sustainable, efficient and provide real outcomes for Autistic Canadians and their families. To do this…the government [is to] develop a body of evidence on what is working, to aim for continuous improvement, and to have annual, public…report backs on progress” (A Blueprint and a Roadmap for National Autism Strategy, 2020) in order to:
- Define autism.
- Involve autistic people at every step through advocacy, self-advocacy, and outreach.
- Support autistic adults with rent, groceries, mental and physical health services, and transportation to assist ASD adults who live on their own with no government support.
- Train non-autistics to help and support autistic people, creating a more knowledgeable and accepting society.
- Care for autistic seniors and train healthcare professionals to work with them.
- Aid autistic adults in paying their bills and accessing housing, alleviating the burden of poverty, and increasing their quality of life.
- Improve access to mobility aids, assistive devices, and technology, as well as provide a free and accessible transportation system for people with sensory sensitivities.
- Give access to all types and levels of education, whether through scholarships or other means. The autism strategy for Canadians also involves comprehensive training of education staff who work with autistic students.
- Research and collect health data from autistic people across Canada to provide policymakers with accurate statistics on the autistic population and what their lives and needs look like. Such data is expected to prove useful in developing programs and services that benefit autistic Canadians.
- Research the intersectionality of race, class, and gender in ASD. Like any other group, Autistic people experience differing privileges and prejudicial treatment depending on who they are (beyond being autistic). Autism services for Indigenous peoples is an area of enormous importance as there are more unmet needs among Aboriginal individuals and families.
Will It Help?
There’s less criticism of the NAS today than even a few years ago. Some Autism Advocates initially doubted the government’s promise to honor the “Nothing about us, without us” principle because a “needs study” was too small, “and only 2.4 percent of the participants…were even autistic” (a4aontario, 2021). The Autism community remains concerned that autism organizations will monopolize Strategy funding while seeking to represent their own business interests.
I want to believe the autism strategy for Canadians is being developed in good faith, that it will include Autistic Voices, and improve many aspects of life for autistic Canadians. But while actively working as an Advocate, I knew of 30+ provincial Mental Health reform reports written between 1983 and 2016, which seemed ultimately to be shelved.
NAS funding is federal, and provincial failures don’t mean the autism strategy for Canadians will fail. However, any plan can fail due to unexpected circumstances. The NAS promises to increase support services as well as provide additional funding for those services. This reminds me of the nearly 50-year-long psychiatric hospital deinstitutionalization process that began in the 1960s. Deinstitutionalization was supposed to be a humane process, allowing patients greater dignity by receiving care in their home communities. But, few community mental-health centers were built, creating an extreme shortage of mental health care and increasing homelessness. Governments are good at sloganeering, but their plans may amount to empty vows.
Final Thoughts
Before my ASD diagnosis, one psychologist told me: “You were assessed by the best Neuropsychologist in the city. If she didn’t diagnose Autism, you’re not autistic.”
One of my chief concerns about the autism strategy for Canadians is whose voices will carry farther. Autistic voices? Or those of the clinicians who spend a few hours asking questions, then assume they know us better than we know ourselves? Nothing about us without us must be the guiding principle.
Annie Kent, MA, spent two decades working in public sector disability, mental health, and infectious diseases advocacy and education. Diagnosed with three closely related categories of neurodiversity, a lack of awareness and understanding led to autistic burn-out and retirement from the field. She remains an active advocate, always learning and engaging remotely with several Autism and ADHD organizations and forums, including the Canadian ADHD Resource Alliance (CADDRA). For more information, visit her website, www.aspiefemmepress.ca, or email Annie at ajollymo@lakeheadu.ca.
References
A Blueprint and a Roadmap for National Autism Strategy – Autism Alliance of Canada. (2023, August 14). Autism Alliance of Canada/Alliance Canadienne de l’autisme. https://autismalliance.ca/initiative/guiding-nas/blueprint-roadmap/
Autism Explained: History of Autism. (n.d.). Autism Canada; Autism Canada Autisme.org. Retrieved February 21, 2024, from https://autismcanada.org/autism-explained/history-of-autism/
Canada’s Autistic-led organization oppose the National Autism Strategy: Here’s why. (2021, September 10). A4A Ontario; A4A Ontario. https://a4aontario.com/2021/09/10/canadas-autistic-led-organization-oppose-the-national-autism-strategy-heres-why/
Davin, N., Watson, S., Harding, K., & Ghaderi, G. (2022, December 19). A cohort of Ontario physicians’ knowledge regarding autism spectrum disorder: a mixed methods study. International Journal of Developmental Disabilities; Taylor & Francis Online. https://www.tandfonline.com/doi/full/10.1080/20473869.2022.2149101
Dhanraj, T. (2019, August 1). Ontario government not doing enough to support adults with autism, family says | Globalnews.ca. Global News; Global News. https://globalnews.ca/news/5715546/ontario-autism-funding-
Evans, L. (2013, June 4). Diversity in Canada: an overview | Canadian Immigrant. Canadian Immigrant; Canadian Immigrant. https://canadianimmigrant.ca/guides/moving-to-canada/diversity-in-canada-an-overview
Ghaderi, G., & Watson, S. L. (2019, February 19). “In Medical School, You Get Far More Training on Medical Stuff than Developmental Stuff”: Perspectives on ASD from Ontario Physicians – PubMed. PubMed; J Autism Dev Disord. https://pubmed.ncbi.nlm.nih.gov/30220019/
Gallaher, L., Butler, C., Banerjee, S., Wright, J., White, A., & Daley, S. (2023, February 28). Medical student perceptions of autism education: A qualitative study. Front Rehabil Sci. Doi 10.3389/fresc.2023.1096117. PMID: 36926183; PMCID: PMC10011116
Health Equity in Northern Ontario – Health Quality Ontario (HQO). (n.d.). Health Quality Ontario (HQO); Health Quality Ontario. Retrieved February 22, 2024, from https://www.hqontario.ca/System-Performance/Specialized-Reports/Health-Equity-in-Northern-Ontario
Laube, A. (2023, June 10). Explainer: Canada’s National Autism Strategy. AutismBC; AutismBC. https://www.autismbc.ca/blog/news/national-autism-strategy-canada/
Mimzy. (2024). Young boy childhood. In https://pixabay.com/illustrations/ai-generated-young-boy-childhood-8489754/
Provost, K. A. (2011, August). Developing a pan-Canadian transformative partnership to build the capacity to address Autism Spectrum Disorders in Canada. Autism Society Canada Societe Canadienne de l’autisme; Autism Society Canada. https://www.ourcommons.ca
