My Vision for a National Autism Strategy
With consultations well underway, I wanted to put together a brief version of what I believe a National Autism Strategy could look like.
In February of last year I wrote a piece about how I thought the National Dementia Strategy looked to be a model of what we might expect from the autism strategy.
There‘s clearly a similar process: A government-recognized plan to create a strategy, the formation of an advisory group to guide the process, a consultation period, a budget commitment, and then the creation of a report that will ultimately inform the strategy.
From the “What We Heard Report - Informing a dementia strategy for Canada,” the following passages were included, which I feel really sum up the goals of an autism strategy as well:
“Conference and roundtable participants called for a Canadian dementia strategy that puts people living with dementia and their family and friend caregivers at its core. They told us that it is possible to live well and achieve quality of life at all stages of dementia through compassionate diagnosis, connection to support systems, increased awareness of dementia among all Canadians and reduced financial hardship for those living with dementia and their caregivers.”
“We heard that equitable access to diagnosis, treatment, support and care across the country is not always available. Those in rural and remote communities as well as Indigenous peoples were highlighted as being most often impacted by differences in the level of care available.”
“Canadians want a dementia strategy that puts the quality of life of people with dementia and their family/friend caregivers at the forefront; where person-centred, compassionate, integrated care is provided with equity across the country, and the rights of people living with dementia are respected.”
Just replace dementia with autism, and I think PHAC already has a pretty good start for what the community is looking for out of this strategy.
It’s worth taking the time to look at the full dementia strategy document, to see what kind of structure we’re likely to end up with for an autism strategy at the end of this process.
Here you can find the short version (since the long version is 110 pages):
It was about what you’d expect.
Overall the scope of it was very broad, but it identified an overall vision, some guiding principles, and then a short list of national objectives for what the strategy would be working towards.
I could certainly see the national autism strategy using this same general framework, so let’s go through this process.
Vision
A Canada in which autism is better understood, embraced, and all autistics are provided the necessary support to live, work, and thrive in a world not designed for them, to achieve the quality of life they all deserve, founded in inclusion and acceptance.
A very key difference between this vision statement I wrote, and the one used for the dementia strategy, is that prevention was one of the primary objectives for dementia.
Autism is not something to cure or prevent, but rather a neurological difference that needs to be better understood and better accommodated.
I can tell you with confidence that a national autism strategy founded in goals associated with prevention or cures will NOT have any support from autistics.
There needs to be a clear emphasis on inclusion and accommodation.
Guiding Principles
I think the principles used in the dementia strategy largely hold true for what the autism strategy should be guided by as well, so here they are, copied from the dementia strategy, with some minor alterations to the descriptions only:
Prioritizing quality of life: Actions taken to implement the strategy prioritize the wellbeing of people living with autism and caregivers. Quality of life includes access to quality care and supports, and supportive communities.
Respect and value diversity: Initiatives undertaken by all partners are inclusive, with special consideration of those who face barriers to equitable care. Respecting and valuing diversity also includes a focus on distinct Indigenous needs and community involvement.
Respect human rights: Actions taken under the strategy will respect the human rights of those living with autism. A human rights lens is one of inclusion and health equity, respect for choice, hearing the voice of those living with autism, and consideration of caregiver perspectives.
Evidence-informed: All partners will use evidence to make decisions and take a broad approach to gathering and sharing the best available knowledge and data about autism. Evidence-informed considers best evidence, all forms of knowledge, working together to build evidence and knowledge, and informed decision-making.
Results-focused: Partners focus on outcomes in implementing the strategy and tracking progress, including evaluating and adjusting actions as needed. Results-focused includes initiatives that support reporting, enabling evaluation, measurement, accountability and flexibility to evolve.
There wasn’t much I needed to change in there, as the methods used for translation of knowledge into action, along with the considerations needed to be made, are pretty universal.
National Objectives
Here’s where we get into the meat of it.
The push for a national autism strategy is not a new one, so there is a lot of source material to look at regarding where priorities may lie.
In a previous piece, I outlined 3 broad goals I felt a strategy should have:
- Ensure autistics have the support they need across their lifespan.
- Ensure that same level of support is universally available across the country, meeting an agreed-upon standard of care.
- Strive towards a more inclusive and accessible society for autistics.
To achieve those goals, I felt that there were 3 large areas that needed to be addressed, as they were all a common source of concern:
- Employment
- Housing
- Therapy funding
Let’s translate this into some National Objectives.
I’ll list them first, then go into more detail about each one.
- Enhance inclusion and accommodation of autistics in the workplace
- Improve access and quality of housing solutions for autistics who require additional support
- Ensure equitable access and funding across Canada and within provinces/territories to evidence-based therapies and supports
Enhance inclusion and accommodation of autistics in the workplace
There is a very high rate of unemployment in autistics, and for those that can, and want, to work - this is a large problem.
Much needs to be done to create more inclusive workplaces.
Employers need to be more willing and able to provide the necessary accommodations to build more job opportunities for those not just with autism, but all disabilities. This will not be a quick or easy culture shift, but it’s an important one.
As a parent to 2 young autistic children, employment issues are not top of mind in my household right now, as it will be many years before my children would even have the opportunity to enter the workplace, but I worry about how available or inclusive their opportunities may be in the future.
Meaningful employment for autistics should not be a pipe dream, and every effort should be made to make the workforce a more inclusive place for autistics.
Improve access and quality of housing solutions for autistics who require additional support
The waitlist for supportive housing is alarming, and said to be over 20 years long.
A topic that many parents think about, but don’t want to talk about is:
Who will care for our children after we’re gone?
For autistics who are able to live on their own without additional support, this may not be a major concern. But for families caring for a child with high needs, it’s hard not to think about how your child will need continued support long after you’re able to give it to them directly.
What then?
We all want the best for our kids, and knowing that they will have a place to live and be cared for across their lifespan, especially once we can no longer care for them ourselves, should be an important piece of the national strategy.
Ensure equitable access and funding across Canada and within provinces/territories to evidence-based therapies and supports
This component is one that many may consider absolutely critical.
It’s one of the big reasons there’s been a huge surge of advocates pushing for a national autism strategy in recent years, largely due to the sudden change made to how autism therapy is being funded in Ontario right now.
With the number of children diagnosed with autism steadily on the rise, the waitlist for support has never been higher, and the provincial governments all handle autism funding very differently.
It’s worth taking a look at this summary that Autism Canada put together a few years ago about the inter-provincial differences to autism therapy programs:
There’s really no consistency across the board, and the program of the day is subject to possible immediate and drastic changes if a new provincial government comes into power and decides they want to muck around with things.
For a group of kids that rely so heavily on routine and consistency to help keep them regulated, the prospect of constant programming changes is not a welcome one, nor is it likely to achieve good outcomes.
The fact that funding for autism supports is so different in each province also means that where you live may drastically affect the opportunities your child may have to thrive. There needs to be a higher standard of care .
It’s important to remember that the long road towards a National Autism Strategy started from the 2007 Senate report: Pay Now or Pay Later — Autism Families in Crisis. Take the time to read it, as it’s still very relevant today. It was focused primarily on funding for autism therapy, and why failing to support autistic children early on can greatly increase their needs later.
Previous failures to make progress on a national autism strategy came from suggestions to change the Canada Health Act, which always seemed to be a non-starter. More on that history can be found here.
There is absolutely a way around that, though, using bilateral funding agreements between the federal and provincial governments, for which there is a clear precedent with recent national strategies put forward in Canada (dementia, housing, etc).
There is a need for more consistency between provinces, both on what types of (evidence-based) therapy are accessible, as well as the amount of funding the provincial governments have available to them in order to offer that level of service in an equitable way.
Federal support is needed.
This has been by no means an exhaustive list of what I feel should be included in a National Autism Strategy, but based on research on this topic over the last few years, and inspiration from Canada’s recent Dementia Strategy, I think it gives a great place to start.
Depending on age, location, and abilities, there’s going to be some large differences out there on what people hope a national autism strategy will be for them.
A truly inclusive autism strategy will ensure that no matter where autistics are in their lifespan, or where they live in Canada, they have the support they need and deserve to thrive.
