'We can't hit pause': Parents of children with autism still waiting for specifics on provincial autism program

A Manitouwadge woman says a Tuesday meeting with a provincial minister didn't leave her hopeful that access to autism support services in Ontario will improve anytime soon.

"We just need transparency," said Danielle Paananen, whose 13-year-old son was diagnosed with moderate autism when he was three. "When it comes to parents of autistic children, like our kid's autism, we can't hit pause. We can't. It doesn't wait until we're able to get them the therapy that they need."

"So a lot of us are kind of sitting in crisis," she said. "Especially those with children with mental health challenges, which is where my son is sitting, or children on the severe end."

The province announced it was revamping the Ontario Autism Program to improve access three years ago.

However, the number of children on the wait list has grown to more than 50,000; so far, about 600 children have been enrolled in the program, which launched in March and provides funding for services — such as applied behavioural therapy and speech language pathology — based on the individual needs of each child.

Paananen said it's all amounted to a lack of access to support in northern Ontario. With funding cuts, she said, "we're seeing a lot of providers leaving the field completely because there's not a whole lot of stability right now.

"So having access to providers has been a big concern, because we're either having to travel or we're sitting on wait lists for a year and a half to two years or more, depending on which provider you're looking at," Paananen said. "We're just seeing our kids kind of sitting, and we're just waiting."

Paananen was among a group of parents of children with autism who met with Merrilee Fullerton, Ontario's minister for children, community and social services, on Tuesday.

She said the meeting left her with the feeling that "nothing is actually happening on the back end."

Krista Smith, whose son Conor was diagnosed with autism at age two, was also at Tuesday's meeting. The families asked a variety of questions, including what was going to be done to build capacity in northern Ontario.

But, Smith said, all the answers they received were vague.

"I need to know what's going to happen," she said, adding her son has been doing "wonderful" as he has access to some of the services he requires. "He is flourishing. He is talking more. It's just it's amazing to see."

But Smith said she and her husband won't be able to afford keeping Conor in therapy in the event funding stops.

And Smith, who works in a special needs education program, said it's frustrating to see kids who aren't necessarily getting the support they should be.