Lack of understanding of adult autism in Canada also

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A think-tank formed to understand the challenges faced by autistic seniors says there are few resources in place to address their specific needs.

A report from the Aging and Autism Think Tank says the vast majority of research and programming geared toward autism focuses on children, leaving adults almost entirely out of the conversation.

The study — compiled by academics, clinicians and autistic adults from five different countries and released by Autism Canada — says autistic people lose access to key resources once they age out of childhood and contends the problem intensifies the older they get.

"[Autism] is absolutely misunderstood at a societal level, but even more concerning is that it's misunderstood among clinicians and caregivers and professionals," said Kevin Stoddart, a member of the think-tank and director of Toronto's Redpath Centre for autistic people of all ages.

"That lack of understanding can really do harm and affect somebody's long-term outcome really adversely if they're not diagnosed and supported in ways consistent with autism."

The report suggests part of society's misunderstanding of autism stems from a long tradition of ignoring the voices of autistic people, and calls for more proactive efforts to include their perspectives in matters that impact them.

Part of the problem, Stoddart notes, is that autism as a term is little understood outside of a childhood context.

Better preparation includes developing more diagnostic tools, Stoddart said, adding there are few options available to help medical practitioners identify adults with autism later in life.

He said the think-tank heard it's common for autistic adults to be wrongly diagnosed with a different condition and receive incorrect or inappropriate treatments, noting the phenomenon seems to be more common for autistic women.

Autistic people consulted in the report said they fear assisted-living facilities or other supports they may need post-retirement may not understand or accommodate their needs.

The think-tank's report also highlighted the fact that those with autism and co-occurring conditions may struggle to communicate the exact nature of their pain or other symptoms, resulting in medical professionals misinterpreting their behaviours.

"More research is needed on how co-occurring medical conditions contribute to behaviour and experiences, and how this changes with age, thus shifting the focus from behaviour management to the biological causes of behaviour," the report said.

Stoddart said much of the present-day research focused on aging has not looked specifically at autistic populations and called on academics to start focusing more attention on the demographic.

The message was similar for policy and program developers, but with one specific caveat: ensure autistic people from all across the spectrum are actively consulted.

We've excluded people with autism consistently from conversations about research and provision of services," Stoddart said. "That needs to change."

That sentiment was echoed by autistic advocates who weren't involved in the report.

"More research is needed on how co-occurring medical conditions contribute to behaviour and experiences, and how this changes with age, thus shifting the focus from behaviour management to the biological causes of behaviour," the report said.