'The most gut-wrenching feeling': Parents say they're being advised to call 911 on their own children due to lack of autism supports

Lori Deschaine said her 28-year-old son with autism acts like a sweetheart most of the time — but there are moments when he can become so violent that she has no choice but to call for help.

"He's separated my wrists and shoulders so many times that they're weakened," said Deschaine. "Just a couple weeks ago, he separated my shoulder in public."

Amid an extensive waitlist for supportive housing and a shortage of support workers who can care for her 28-year-old son, Deschaine said she reached out to Developmental Services Ontario (DSO) in search of an alternative solution to manage his violent behaviour.

But the answer was not what she was expecting.

"They said, 'If you can't handle it, call the police.' They told us there is no housing and nowhere for us to put them. So you just have to deal with it yourself," said Deschaine.

According to Autism Ontario's youth transition specialist, it's not uncommon for other parents of individuals with autism to be given the same advice: to call 911 on their own child.

"I sometimes hear families say they were coping. They were managing. But now their child is 21, 22 or 23 years old. They're six-foot-two and 218 pounds," said Jane McLaren, who added parents would require someone to come into their home and calm their child down as they grow into adulthood.

In 2011, the Windsor Police Service introduced an autism registry where parents can provide officers with information about their child's specific needs ahead of a future call for help.

Deschaine said, on most occasions, officers who showed up at her door seemed to be well-versed on the specific needs of people with autism — but that has not always been the case.

According to McLaren, that's been a longstanding issue for autism families seeking immediate support to address dangerous behaviour in their homes.

"You're calling in those emergency specialists with an expectation that they come in with the knowledge, skills and equipment to help and support and achieve the best possible outcome for the person who's in a crisis," said McLaren. "That's where the system starts to break down."

She added, "In some cases, these workers are not trained on how to understand, approach and support autistic youth and adults. So they come in and they do the best they can."

CTV News Windsor reached out to the Windsor Police Service but did not hear back by publication time.

In a statement, Ontario's Ministry of Health said families registered in the Ontario Autism Program (OAP), which serves children and youth under the age of 18, can access a range of services and supports including urgent response services.

But McLaren said many families face the sudden reality of realizing adult programs are often funded much lower than youth programs.

According to the provincial ministry, people are prioritized for services through "a process that balances an individual’s risk and developmental services resources."

"The ministry has a consistent province-wide process to help people and families who require urgent supports," the province said.

The province added, "In these cases, the local Developmental Services Ontario (DSO) office collaborates with a network of developmental services agencies and community partners to identify interim supports to address the person’s specific urgent needs."

As for Deschaine, she said previous support workers who were hired to care for her son stopped showing up because they wanted to be paid more.

"So in terms of changes which are needed in the system, we need more support workers because so many quit over COVID," said Deschaine, who added her son outweighs her by approximately 50 lbs.

"Making the call to 911 on your own child is the most gut-wrenching feeling,” she said.

Autism support advocates have previously told CTV News Windsor that supportive housing waitlists can extend as long as 20 years in some cases.

In February, CTV News Windsor spoke with Sheri Raley, a mother of a 20-year-old son with autism, who said her son has become very violent. In a follow-up message Wednesday, she added a DSO representative recently advised her to call 911 on her son.