Autism groups' survey hopes to improve local support

Parents of Ottawa children with autism will be getting more context on what other families are going through with a new survey.

CBC Ottawa reported Monday on the experiences of one local family paying $6,000 to $7,000 a month for autism therapy while they sit on a waiting list.

Autumn Alberelli said her twin children would probably have to wait a total of about two and a half years for government support, so they elected to pay for that earlier start themselves.

"If I had to sit and wait for it, I don't know. The whole family would be a mess," she said.

"It would be hard. Really hard. Because every day that goes by, the window is closing."

Kim Moore of Kanata’s Portia Learning Centre said the family’s plight isn’t unusual.

"Parents are re-mortgaging their house. They're going to other family members," she said.

"Parents are going into extraordinary debt to pay for the therapy they know their kids need right now."

Autism groups, Carleton students team up for survey

Autism Ontario and QuickStart have put together a new survey, asking parents of autistic children to anonymously share their experiences with a diagnosis, behavioural therapy and speech help, along with how they’ve been coping.

"Our goal is to find a way forward. We need to get help," said Suzanne Jacobson, founder of the non-profit QuickStart and grandmother to two autistic children.

"We need to get early intervention to the children, so the more information we can gather, the more we can work toward a solution."

Jacobson said she asked Carleton University students to help with the research, which focuses on Ottawa’s challenges.

"The one thing that makes our survey different ... is that it is looking at the Ottawa system," said Kate Muscat, a social work student at Carleton.

"So how is our system functioning and how long is Ottawa waiting to provide service to children with autism?"

Results coming in, will be shared with government

Muscat said parents have been keen to share their stories in the surveys they’ve seen so far.

"They want to support other parents who are going to be going through these challenges," she said.

"I think that whether or not your child's already done the program, by providing information on how the system was for that child you might be helping the next child."

Jacobson said the final results will be shared widely, including the provincial government and the Children’s Hospital of Eastern Ontario.