Advocate for Yourself or a
Loved One
Positive Advocacy Resources: Autism Ontario
Advocacy is about securing, protecting and advancing the rights of one’s self or others. People on the autism spectrum/autistic people have rights. Our system has enacted legislation and regulations to support the needs of children, youth and adults on the autism spectrum. All programs and services must be in compliance with current legislation and regulations. Parents and self-advocates, however, may have to strongly advocate to ensure that their rights or their child’s rights are met.
Most effective advocates share a combination of important knowledge and skills:
· An understanding of regulations and rules
· An understanding of the law
· A sense of procedural advocacy
· A realistic sense of what they want and how to work with others to achieve their goals
This process supports self-advocates and their families to constructively express dissatisfaction and contribute to creative solutions to problems existing in human service systems.
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RETRIEVED FROM: https://www.autismontario.com/programs-services/positive-advocacy-resources
Advocacy Skills
​There are four basic forms of advocacy:
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Self-advocacy: taking action to represent and advance your own interests;
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Peer advocacy: taking action to represent the rights and interests of someone other than yourself;
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Systems advocacy: taking action to influence social, political, and economic systems to bring about change for groups of people; and
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Legal advocacy: taking action to use attorneys and the legal or administrative systems to establish or protect legal rights. (Advocacy Training Manual. Wisconsin Coalition for Advocacy (1996), p. 1.)
To be an effective advocate, you need to learn both advocacy skills (techniques for becoming competent in this field) and advocacy strategies (knowledge of how to approach an issue or solve a particular problem.
Learning about and practicing selfadvocacy and peer advocacy skills can enhance your role and confidence in making the decisions that affect your life.
While there’s no guarantee, advocating for yourself is the most direct way to secure change. And that change can mean more than getting the stairwell light replaced. Self-confidence, a healthier self-esteem and newly-gained respect from others can all be surprising by-products of the advocacy process.
The key skills needed to be an effective advocate include being able to: stay focused, properly document and keep records, and be effective across the communication method you require (which could include on the phone, in writing and in-person (such as at meetings).
The key skills needed to be an effective advocate include:
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Staying focused,
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Documenting and keeping records, and
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Communicating ffectively in the communication method you require, usually over the phone, in writing and face-to-face.
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Adapted from Brainline:
Advocacy Toolkit: Skills and Strategies for Effective and Peer Advocacy
Produced by Disability Rights Wisconsin, BIA of Wisconsin,
And Basic Advocacy Skills, www.schooladvocacy.ca › basic advocacy
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Black scales of justice against a white background. IMAGE SOURCE: https://flickr.com/photos/freepride/6351373981
Canada's Promised National Autism Strategy
The Government of Canada is working to establish a National Autism Network. Autism Alliance of Canada, the Pacific Autism Family Network and Autism Speaks Canada are working together to outline the requirements to design, develop, implement and evaluate a National Autism Network.
Bill S-203, also known as the Federal Framework on Autism Spectrum Disorder Act received Royal Assent on March 30, 2023. The legislation outlines a commitment to develop a federal framework designed to support Autistic people, their families and caregivers.
The report, released by the Canadian government in May 2022, identifies 5 major areas where support is badly needed:
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Diversity: The importance for autism supports to meet the extra needs that may come with some differences including, language, learning and housing needs.
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Social inclusion: Generate ways for people to feel safe and accepted within the community including transportation, workplaces and job training.
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Diagnosis and supports: Train more health professionals to diagnose autism, develop tools specific to a person’s needs, transparency on diagnosis wait times, more online supports.
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Economic Inclusion: Government financing, financial support for families, easier access to government support, help for employers to hire and keep workers with autism.
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Research: More research will help improve support, include diverse groups during research, and follow participants throughout their lives.
According to CTV National News, Toronto Correspondent, Heather Butts, ‘Without a national strategy, some autism researchers believe Canada is failing this section of the population.
“We have so many gaps right now in how our services are delivered across the country, we have so much inequity in how autistic Canadians are accessing critical supports they need to live their best lives,” says Deepa Singal, the director of scientific and data initiatives at the Canadian Autism Spectrum Disorder Alliance (CASDA).
Singal also said, “a child born in one province can have a completely different outcome and future depending on the services they were able to access, compared to a child born in a province that didn’t have those sorts of supports or were harder to access."
This report is not a full strategy, but it reassures people within the autism community that the government is committed to moving forward and that a strategy will follow.
However, for many Canadians, the federal government's long-promised national autism strategy isn't coming fast enough, with affordable and accessible support varying drastically between provinces and even communities.
Some families…have moved to the United States for better care. And groups, including Autism Nova Scotia, say they have seen families move across the country in search for better services.
Autism Nova Scotia's Executive Director Cynthia Carroll says the new report synthesizes the information that has been reported by people across the country. However, she says she would have liked to have seen “more direct and concrete next steps.”
At this time (September 2023) there is a report, which outlines findings from the consultations. Apparently, it does not include any recommendations. Instead, “The Oversight Panel and Working Groups will write and submit a report of findings that will inform policy makers tasked with developing the National Strategy on Autism.”
Stay tuned for yet another report.
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Autism Gets An Update: A National Autism Strategy for Canadians
By Anjolie (ARTICLE PREVIEW)
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 supports 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 Nation-wide strategy 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 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, difficulty accessing health care, and to 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)
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.)
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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/. 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