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Advocacy

Explainer: Canada’s National Autism Strategy

June 9th, 2023

Aly Laube

Canada doesn’t have a national autism strategy, but the federal government has committed to creating one for the first time. 

National autism strategies are comprehensive plans implemented by a government to address the needs and challenges faced by autistic people and their families. A national strategy would help encourage a unified approach, ensure consistency in the services provided between provinces, promote best practices, and address support gaps. The ultimate goal is to improve autistic people’s quality of life and create equal opportunities for success. 

Thirteen countries worldwide, such as New Zealand, Qatar, and Malta, have established national autism strategies focused on areas like healthcare, education, employment, social services, and community support. The United Kingdom (UK) was the pioneer in implementing such a strategy in 2010, while other countries, including Canada, are still in the process of catching up.  

On July 11, the Public Health Agency of Canada took another step toward implementing the national autism strategy.

The federal Minister of Employment, Workforce Development and Disability Inclusion announced up to $500,000 in funding for Autism Alliance of Canada, the Pacific Autism Family Network, and Autism Speaks Canada “to outline the requirements to design, develop, implement, and evaluate a National Autism Network that will support the implementation of a national autism strategy.”

“The Network will work as an independent body to bring together autism organizations and partners, including individuals with lived and living experience, to share their skills, knowledge and resources to support key autism priorities and provide a forum for ongoing engagement of Autistic communities on federal policies and programs,” a press release from the federal government says.

People can share their thoughts about the strategy and how they want to be represented in it through a public online survey open from now until August 4, 2023.

What autistic Canadians want

Many advocates hope a national strategy would help autistic Canadians overcome some of their struggles to access assessments and support.  

As it is, a lot of us can’t afford a diagnosis, so we don’t get access to services. Even those who do have a diagnosis might not be able to get what they need in the existing system due to eligibility requirements few fit. Even if you do qualify, there are not enough services available. 

These requirements were designed primarily for autistic children and their families, leaving many autistic adults in Canada without help once they reach adulthood. Waitlists for assessment can be years long, leaving adults without a diagnosis unable to qualify for disability support. Autistic children have a better chance of getting diagnosed young because of the existing government funding designed for them. However, there is no public funding specifically for autistic adults in Canada right now. This is true despite the fact that we know autism is a life-long neurodevelopmental difference that doesn’t end with childhood. 

Precedent for the strategy in BC

It is exciting that Bill S-203, an Act about a “federal framework on autism spectrum disorder”, has been passed in March 2023, and we want to acknowledge the Autism Alliance of Canada and all the partners and stakeholders that have brought us to this point.

There are also many supports and services that are not under federal jurisdiction. This begs the question, what impact will the national autism strategy have in British Columbia, and how will it be implemented locally? Some provinces, like Nova Scotia, are initiating a provincial autism strategy, and we would love to see the same happen in BC.

As a provincial autism organization, AutismBC is eager to explore how this national legislature will affect autistic people, and services and supports in the province. Health and education are among the many that fall under provincial jurisdiction, which are two major concerns for the autistic community. While building the National Autism Strategy, we will also need a Provincial Autism Strategy. 

Potential focus areas for the strategy

From left to right: Terri Hopkinson, Sarah Taylor, and Aly Laube at the Canadian Autism Leadership Summit in Ottawa.

AutismBC staff attended the 2023 Canadian Autism Leadership Summit (CALS), where the national autism strategy was one of the most prevalent topics discussed. We learned a lot about what it might look like. Researchers, including autistic self-advocates, at CALS established the importance of these focus areas:  

  • Defining autism: This will be important because it could relate directly to who is and is not able to access services outlined later in the policy. It will also indicate if the government is taking a neuro-affirming approach to services for autistic people. 
  • Advocacy, self-advocacy, and outreach: How will the strategy uplift and center autistic people affected by the policy? Involving us at every step will be crucial to its efficacy and applicability to autistic people living here. 
  • Autism and adulthood: Things like support with rent, groceries, mental and physical health, transportation, and more could be tremendously helpful for autistic adults who are living independently without any government support. Not every autistic person has access to a caregiver, and a lot of people are stuck in burnout just trying to meet their basic needs. 
  • Public awareness: Training non-autistic people on how to be helpful and supportive to autistic folks can make our society more knowledgeable and accepting. It can also normalize centering autistic voices and challenging stereotypes, among other benefits. 
  • Health: If autistic people could get appropriate healthcare coverage and insurance, it would allow them to get the support they need without going through so much difficulty. Caring for autistic seniors and training healthcare professionals to work with autistic people are also areas that haven’t been addressed federally. 
  • Housing: Giving autistic adults a way to pay their bills and access to housing would change so many lives for the better because it would alleviate the burden of poverty and allow them to focus on spending their time in a way that serves them. Being poor and unhoused is terrible for your mental and physical health, too. 
  • Mobility: Access to mobility aids if needed, in addition to a free and accessible transportation system for people with sensory sensitivities, could also be an important topic covered in the strategy. Assistive devices and technology are very important for autistic people who are non-verbal or experience periods where they can’t communicate. 
  • Education: Access to all kinds of education, whether through scholarships or other means, could help autistic people struggling with money find a way to build a sustainable life. However, it’s also crucial to train all the staff involved, including teachers, counsellors, deans, and so on.  
  • Research: Gathering information from autistic people across the country can help us get better health data. It could tell us a lot about how many autistic people are living here, what their lives look like, and what they need. Hypothetically, that data could be used to develop programs, services, and other strategies for the benefit of autistic Canadians.  
  • Intersectionality: Autistic people experience different amounts of privilege and oppression depending on who they are outside of autism, and it’s important to consider that when talking about their lives in Canada. Autism in Indigenous communities is one focus area the strategy would need to cover, as there are unmet needs for autistic people and their families there, for example. 

Moving forward with Bill S-203

As indicated in the bill, the government must act within 18 months, which provides some context for the timeline and strategy. The process would start with drafting the strategy before leading into a literature review, pre-consultation process, and public consultation. Private consultation with autistic stakeholders and community members may also help create a stronger strategy. It should involve a diverse array of voices and policymakers who can take the information they learn back to their agencies. That way, the information translates to action. Furthermore, we can continue to engage in conversations and consultations about the strategy by looking at what other countries have done.

Working towards solutions and consensus, keeping the timeline on track, and making sure the plan is flexible will also be important factors as Canada moves forward in developing a national autism strategy. 

This is an opportunity for Autistic adults to inform the government about what they need and influence how the policy is shaped to meet their needs.

The Autism Alliance of Canada is currently doing an extensive Needs Assessment Survey 

https://www.autismalliance.ca/adult-needs/

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