Autism after 18: Why the system is failing Canadian adults on the spectrum

Click to play video: 'Ontario families fear for future of adult children with autism' Ontario families fear for future of adult children with autism
WATCH ABOVE: As children with autism pass the age of 18 in Ontario, they are seeing the supports and services available to them drop off significantly. As Caryn Lieberman reports, this is a frightening time for their families. – Feb 18, 2020

Every day, Maureen Francella visits her son Steven at a psychiatric hospital and every day, he asks if he can come home.

“Are you taking me home yet? Am I better now? Did I break things? Are you angry with me?” he asks his mother.

“It’s tough to leave him. I have to say, ‘I can’t bring you home,'” Francella, told Global News.

Steven, 36, has severe autism spectrum disorder (ASD), and he often experiences moments of stress and frustration, becoming violent towards himself and others.

Francella and her husband, who are both 60, are unable to take care of him at home. He currently resides at the psychiatric ward at St. Joseph’s Hospital in Hamilton, Ont.

READ MORE: Autism in 2019 — What we learned about the spectrum this year

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Steven was brought to the emergency room after a particularly bad episode, and Francella had him admitted to the psychiatric ward for what was supposed to be a short stopover before a long-term care facility. He’s been there for 14 months.

Francella is terrified Steven will never get into another care facility, given the long wait times and limited space.

“We’ve been [on the wait-list] for a very long time, long before he was ever admitted to [the emergency room],” she said.

It’s a reality for dozens of families across Canada: Once a child turns 18 — an adult in the eyes of the government — they typically lose access to a lot of government funding and services intended for children. Autism services are currently a provincial jurisdiction, but many adults like Steven end up in psychiatric wards where they don’t get the care they need.

Steven’s mom is terrified he will never get into another care facility, given the long wait times and limited space. (Photo courtesy of the Francella family). Courtesy of the Francella family

For a few years, Steven lived in a group home during the week, going home to his parents on the weekend. The arrangement worked for three years, but then Steven started becoming more violent, self-injurious and prone to destruction of property. He was home one weekend with his mom and a support worker when things took a turn.

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“I was putting groceries away and he was sitting on the sofa, interacting with his support worker,” Francella said. “He suddenly got up, started biting himself, hitting the walls, [he] broke the television and smashed the lamp. He tried to put his head through patio doors.
Click to play video: 'Ontario families fear for future of their young adults with autism' Ontario families fear for future of their young adults with autism
Ontario families fear for future of their young adults with autism – Feb 17, 2020

“We looked at the damages and [his injuries] and his support worker said to me, ‘Maureen, you can’t continue to do this.'”

Francella couldn’t give Steven the type of care he needed, but she doesn’t think the psychiatric ward is the right place for him either.

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“The number one treatment of patients [at the psychiatric hospital] is medication, but Steven has been overly sensitive to all medications he’s ever taken in the past, even Tylenol,” said Francella. “He’s been given very large doses of a number of medications here, [and none] had a positive impact.”

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In the clinical setting of a hospital, Francella said Steven is also missing out on the type of human interaction and socialization he craves.

“He should be in a supported home of his own [and] that could look … many different ways,” she said.

Mainly, Francella said Steven needs a safe and comfortable home that offers 24-hour support.

The age of 18 isn’t a ‘magic number’

Many types of autism support greatly decrease or even stop altogether when a person turns 18. According to Dr. Evdokia Anagnostou, senior clinician scientist at Holland Bloorview Kids Rehabilitation Hospital in Toronto, this is the wrong approach.

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“Autism is a developmental condition. By definition, you don’t stop having autism when you turn 18,” she told Global News. “There’s [nothing] magical about the number 18. People a day under 18 will get quite a bit of service, and the day they turn 18, the services start decreasing rapidly.

In her view, there need to be way more support available for adults with autism, and among other things, they should address housing, employment, healthcare and recreation.

“What is a good life for a person with autism? … All the things that we consider to be part of a good life when we don’t have autism,” said Anagnostou.

“There is a cliff parents talk about after their kids transition out of their childhood system, and it comes from this lack of a well-developed adult sector that meets the needs of the kids so that they can have a good life.”

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Halloween both challenging and rewarding for people with autism – Oct 31, 2019

Without these services, families can experience burnout and people on the spectrum can fall through the cracks.

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It can also lead adults with autism to homelessness and other risky situations.

READ MORE: Infants should be tested for autism if their siblings are diagnosed, study suggests

“We know that people with autism are over-represented in our homeless population. We know that people with autism are over-represented in long-term care facilities,” she said.

There’s very little data on autism in homeless populations, but a 2011 survey conducted in Wales by the National Autistic Society Cymru reported that 12 per cent of their adult participants disclosed being homeless at some point in their lives.

“It’s fair to say that the sector is experiencing quite a bit of distress. The families are experiencing quite a bit of distress and [so are] the individuals with autism,” Anagnostou said.

Transitioning to adulthood

When a person with autism turns 18, a lot of things in their life change very suddenly.

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Community worker Jennifer Bodiguel, the co-ordinator of the Transitioning to Adulthood program at New Heights School & Learning Services in Calgary, says continuity of care can make a world of difference.

“Going from childhood into adulthood, almost everything changes,” said Bodiguel. “You don’t have your pediatrician, you don’t have your high school teachers, you don’t have some of the funding childhood gets you.”

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The Transitioning to Adulthood program aims to lessen the blow, and “almost all” of the students at New Heights have signed up.

“Clearly, the parents are really wanting support,” Bodiguel said. “I look at our transition program as a bridge [to supports that are out there].”
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The program focuses on four main areas: employment, education, independent living and social environments.

READ MORE: Autism, explained — What’s the spectrum and how it develops

“The thing about individuals with autism is that they [typically] thrive in routine and fear the unknown. Graduation and adulthood is the ultimate fear of the unknown. They haven’t a clue what’s next,” she said.

Bodiguel often finds herself accompanying members of the program to outreach programs or job fairs, just to help them feel comfortable with someone they recognize nearby.

“I’m just trying to be that familiar face for them [so they can] access what’s actually out there.”

Call for a national strategy

There are gaps in care throughout the system, but according to Autism Speaks Canada, the major problems are the availability of post-secondary programs, employment, innovative housing solutions, mental health support and support with medical health conditions commonly associated with autism.

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Mental health support is crucial. Seventy per cent of individuals on the spectrum have a comorbid mental health condition (like anxiety, depression, psychosis and suicidality), with 40 per cent having two or more disorders.

“For a family with a young child, they may be able to choose between a handful of early-intervention or social skills programs in their community. However, as one grows up, the selection decreases significantly if available at all,” Autism Speaks Canada said in a statement to Global News.

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The Canadian Autism Spectrum Disorders Alliance (CASDA) believes a national strategy is necessary to improve life for Canadians with autism.

The group is a national coalition of organizations and individuals committed to securing a federal strategy for ASD funding and policies, and it has spent the last 12 years creating a recommendation for the government.

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According to CASDA chair Debbie Irish, the current system — which calls on each province to create its own autism strategy — results in inconsistent care for Canadians with autism, varying widely between jurisdictions and leaving whole communities vulnerable.

READ MORE: ‘It has made me a better person’ — What it’s like to raise a child with autism

Francella agrees — the government needs to make drastic changes, and fast.

“It’s extremely traumatic to go day in, day out, knowing that nothing is changing and being scared every day that Steven might end up being here for a very long period of time,” said Francella.

“I believe the government should be supplying money to help everybody — not just autistic individuals — but anybody with a disability who requires a home. No one should have to remain in a hospital that doesn’t need to be in the hospital.

“Every person out there should have the supports and services they need for their child, teenager or adult to live a happy independent life.”

— With files from Caryn Lieberman

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