Autism Canada -Facebook

More support needed for those aging with autism

According to a report individuals with autism need support and resources as they age

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 new 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.

RELATED: Autism awareness in Salmon Arm

“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.

Though autism was first identified in 1943, it did not enter the Diagnostic and Statistical Manual until 1980, according to the report. The research that has evolved over the ensuing decades and the programs resulting from it, the report said, have been focused almost exclusively on children.

Laurie Mawlam, executive director with Autism Canada, said children who may be relatively well-supported through their youth are left with few to no resources once they turn 18.

Options are more plentiful for adults who have an intellectual disability, but Mawlam said autistics who do not are often left particularly unsupported. Her organization, which advocates on behalf of autistic people and their families, is facing increasing pressure to fill that void, she said.

“We’ve started to do programming for adults, but we weren’t ready for it,” she said. “I don’t think we’re ready today for these children that are going to grow up and be seniors. We’re behind the eight ball, and that’s why we need to be better prepared for these senior years.”

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.

RELATED: Fight for autism diagnosis arduous for adults in B.C.

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 autistics with 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.

Vivian Ly of Canadian Autistics United said the conversation the think tank is promoting is necessary and “a long time coming.”

Ly praised the group’s emphasis on wider inclusion, saying it may help steer dialogue away from avenues the autistic community has felt uncomfortable with.

“Rhetoric about finding a cure for autism is concerning,” Ly said, noting such conversations make false assumptions about the value of autistic people’s lives. “My hope is that researchers move away from curing autism and move towards supporting autistic people in living full, authentic lives.”

Ly also urged anyone taking up the think tank’s call to action to be sure to include autistic people from all walks of life, genders and ethnic backgrounds.

The Canadian Press

Like us on Facebook and follow us on Twitter.

Just Posted

Moms of those killed by illicit opioids take to B.C. Legislature in call for action

Moms Stop the Harm, a nationwide network of families who have lost loved ones to overdoses rally

Trudeau announces bioregional oceans protection agreement in Prince Rupert

Agreement announced in partnership with 14 central and north coast First Nations

115 new wildfires burning across B.C. due to 19,000 lightning strikes

More fires expected to start today, says BC Wildfire Service officials

Local artist Danika Naccarella commissioned to design artwork for Northern Sea Wolf

The Sea Wolf symbolizes family, loyalty and the protection of those travelling their waters.

‘Daddy bonus’ common in B.C. workplaces, study finds

UBC researchers say dads don’t have to be number one in the office to get a raise

VIDEO: Canadian toddler caught practising hockey skills in crib

Eli Graveline is getting praise from far and wide as the internet freaks out of cute throwback video

Man shot dead in Surrey ID’d as hockey coach and father of two

Murder of Paul Bennett – a respected Peace Arch Hospital worker and ‘champion of sport’ – ‘not random’

Serial killer Robert Pickton transferred to Quebec: victim’s family

Pickton was convicted in December 2007 of six counts of second degree murder

Canadian Syrian children’s choir not to attend festival over fears about U.S. travel

Many kids are recent immigrants from countries covered by Trump travel ban

B.C. teacher ends Jeopardy! winning streak, taking home US$69,000

Ali Hasan, from New Westminster, has been gaining fans as a “one-man invasion,” says Alex Trebek

Jett Woo highlights 5 Canucks choices on Day 2 of NHL entry draft

WHL star out of Moose Jaw tabbed in Round 2

In a matter of hours, women in Saudi Arabia will be allowed to drive

Change was announced as a royal decree in 2017 by Crown Prince Mohammen bin Salman

Feds announce measures to protect endangered whale species

Canada’s Whale Initiative is part of the federal government’s $1.5 billion Ocean Protection Plan

Most Read