Autism Awareness Day: New report unveils overlooked needs of Autistic adults in Canada — what to know

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Yahoo Canada will be using identity-first language when referring to Autistic individuals, as per the recommendations of the report.

For Autistic adults in Canada, accessing a formal diagnosis is just one major barrier to an equitable life. Now, a new report on Canadian Autistic adults is shedding light on their needs and solutions to the gaps in services.

The Autism Alliance of Canada, in partnership with McMaster University and with funding from the Public Health Agency of Canada, released "Fostering Inclusion, Exploring the Needs of Autistic Adults in Canada," on April 2 — World Autism Awareness Day.

The Autistic-led survey examined a demographic that lead researcher Dr. Mackenzie Salt says is still overlooked in data and services. "We knew they existed... Autistic children grow up to be Autistic adults," Salt says. "But we didn't know what their needs were because there were no services for them or any other way of really tracking the needs of the community."

This is unlike children with autism, who have several touch points and services that can put them in contact with trained professionals and recognize the need for diagnosis. These can include the school system, publicly-funded children's services and speech therapy services. "For adults, we don't have that," Salt adds. "After 18 or 21, they sort of drop off and there isn't that support there. So the government isn't necessarily aware of them or their needs."

But why does this report matter? And what are the needs of Autistic adults in Canada? Here's what you should know.

Diagnosis, costs, stigma & more: Report findings

Right now in Canada, access to testing for adults can be muddy. While the specifics of accessing a test may vary by province, there is currently no federal or provincial funding for adults to receive a diagnostic assessment for autism.

This means many Canadians are left to do so out of pocket or using their private insurance coverage. It can be an expensive process — ranging anywhere between $1,500 to $5,000. According to Salt's report, cost was the most frequently reported challenge and barrier to accessing a diagnosis.

Almost 70 per cent of those surveyed who have a formal diagnosis said that it had a positive impact on their personal identity. Salt knows this firsthand. Diagnosed with Aspergers when he was 13, the researcher says the diagnosis was life changing, especially after years of being told he was, as he tells Yahoo Canada, "gifted with a learning disability."

A lack of access often leads to self-diagnosis among Canadians.

"There's a lot of reasons [why adults are overlooked]," says Dr. Laura Goodman, a registered psychologist working in the Toronto area. "Some of it is generational; over the years, the autism spectrum has widened, so people who are now considered to be on the autism spectrum may have been overlooked from a generation before."

Goodman also notes that professionals who are trained to do autism assessments are usually psychologists and developmental pediatricians. They often have more involvement with youth through the healthcare and school sectors.

In addition to accessing diagnosis, the report identified six other areas of need, including:

1. Addressing challenges with employment

2. Financial vulnerability

3. Accessing affordable housing

4. Improving mobility via accessible transportation

5. Health challenges

6. Feeling socially disconnected

About 90 per cent of survey participants reported they've felt left out or isolated — that's more than double the rate among Canadians during the pandemic.

For Salt, these areas of need are one of the most important aspects of the study, highlighting the fact that Autistic adults have needs in many, often overlooked, domains of life, and these needs are not all the same.

Diverse needs require diverse solutions

Autism is "incredibly" heterogeneous, Salt explains. "There's an expression in the autism community, 'when you've met one Autistic person, you've met one Autistic person,'" he adds. "The variability, the challenges, the symptoms that individual people have, one size fits all doesn't work, and this report really brings that out."

It also means that a solution isn't one-size-fits-all, either. "We need a robust National Autism Strategy to address the patchwork of support for Autistic people, depending on where they live," Salt says. As outlined in the report, a successful National Autism strategy would include, among others:

• Equitable access to services across a person's life

• A focus on helping Autistic adults become more involved in the economy

• More financial support for Autistic adults via accessible disability programs

• Accessible and affordable housing

"Right now, if you're an Autistic person, your access to or levels of support depend on your postal code, and it shouldn't be that way in an equitable program," Salt says. "We need to collaborate across levels of government, across sectors, and involve representations from, Autistic adults, caregivers, families in the decision making."

What can I do to help?

For those outside of the Autism community, Salt advises speaking with your local MPs about creating meaningful support programs. "Talk to your local autism advocacy organizations and other Autistic people around you to understand the community needs and what can be done to help."

It's essential that we make access a priority, because having a diagnosis can change how adults feel about — and understand — themselves. Salt's experience getting an Asperger's diagnosis was the same.

"I hear all the time, especially in doing this work from people who were diagnosed as adults and, and [the diagnosis] lifts the veil that they always felt they didn't fit in," Salt says. "I know that was my experience. In school, I felt I didn't fit in, I was weird, and I didn't really know what was the issue."

Once he received the diagnosis, Salt says he learned more about what it meant, and by extension, how he and his brain worked. "This is something that I can adapt to, and there's a reason, I'm not just weird, I'm not just strange. So I can definitely relate to the participants in this survey who said that it had a positive effect on their understanding of their personal identity, because I had the same positive experience."

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