Why parents of some Ontario adults with severe autism say they're 'terrified' for their futures

Andrew Kavchak's decision to retire was less about taking time for himself, and more about taking care of his 22-year-old son, Steven, who has severe autism.

Three days a week, Kavhak drives Steven to take part in a day program for adults with disabilities. He says the cost is high, though an Ontario government program called Passport does provide some financial assistance.

But he worries about the future. Steven needs constant care and cannot live by himself.

The former public servant has been navigating Ontario's changing autism program for nearly two decades since his son was diagnosed with autism at age three.

"The truth is that it's really difficult sometimes to take care of a child, even an adult child who's severely disabled. It's exhausting," he said.

When Steven aged out of the Ontario Autism Program at 18, the family was thrust into another system that he says offered little to no help.

Adults with autism can turn to Developmental Services Ontario for support, but the wait lists can be just as long, if not longer, than the Ontario Autism Program. Kavchak says he's been told the wait to get his son into a group home could be 10 years.

"We've been on the list for four years. There's still no indication of when our son may eventually get placed in a group home. This is extremely worrying," said Kavchak.

Advocates say there are not enough group homes in the province to accommodate the growing need. In large cities like Ottawa and Toronto, available spaces are being used for urgent care situations, such as when parents are no longer able to manage the care.

Tobi McEvenue, the manager of transition and adult supports at Autism Ontario, said there are not enough resources and services. She said it's critical for people with severe forms of autism to have access to services from childhood well into adulthood.

"We spend the majority of our lives as adults and we require accommodations experienced as youths to carry with us into adulthood because they enable a lot of folks to maintain the proper quality of life that they deserve," said McEvenue.

Autism spectrum disorder ranges in severity. Some people with severe autism require constant care and supportive housing. Adults with low to moderate autism are typically able to live independently.

McEvenue said there is also a large portion of people on the spectrum who are looking for work, which is an issue that is often overlooked.

"It's not a positive horizon for a lot of folks," said McEvenue.