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

A Manitouwadge woman says a Tuesdaymeeting with a provincial minister didn't leave her hopeful that accessto 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 whenhe 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'twait 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 withchildren 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.

• In Depth
  Parents losing trust in Ontario government as autism program wait list grows

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 toproviders 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 parentsofchildren withautism who met withMerrilee 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."

Vague answers from minister

Krista Smith, whose son Conor was diagnosed with autism at age two, was also at Tuesday's meeting. The families asked a variety ofquestions, 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.

"They are so smart and there's just so much potential there," she said. "But they don't have access to those professionals who can draw it out.

"Wetry really hard, but we don't have that training."

A statement from the office of Ontario children, community and social service minister Merrilee Fullerton confirmed the meeting, and said they are working to build a new, equitableOntario Autism Program to support children and families.

They did not say when or how they will address the growing waitlist of children and families waiting to access the new needs-based program.