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

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 psychiatric ward at St. Joseph’s Hospital in Hamilton, Ont.

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.

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.

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.

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.

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

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.

“The adult sector is not as well-developed as the childhood sector for autism.”

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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