New Brunswick

'It's really worrying': Summit looks at struggles faced by adults with autism

Improving the lives of adults with autism was the focus of a summit in Shediac this weekend. It was hosted by two women who have personal experience with the disorder.

Autistic Adults Summit brings together adults with autism, caregivers, and healthcare professionals

Caroline Jose is the co-founder of the CONNECT Project, and is a researcher with the Maritime SPOR Support Unit. (Radio-Canada )

Caroline Jose wants to make sure her son has the best future possible. She's one of the organizers of a summit that took place in Shediac this weekend with the goal of improving the lives of adults with autism spectrum disorder. 

Jose's eight year old son has autism. While he's functioning well now, she worries about his future. 

"He has his own challenges, and he's still doing good, but to see that for even high functioning autistics, the rates of unemployment is so high, the rates of suicide and depression are so high, higher than the general population, so yes, it's really worrying," she said. 

Assessing the needs

When Jose realized how few services there are for people with autism after they age out of the school system, she got involved with the the CONNECT project, a venture that is run by her, and Patricia George-Zwicker, an adult with autism who works for Autism Nova Scotia.

The project is assessing the needs of adults with autism in the Maritime provinces. They are asking people with autism, and those who live and work with them to fill out a survey to get to the bottom of what those needs are.

They also hosted the Autistic Adults Summit this Friday and Saturday. It was a chance for adults living with autism, caregivers, healthcare professionals, and other experts to discuss how to improve the lives of adults with autism spectrum disorder. 

Patricia George-Zwicker is the co-leader of the CONNECT project, which is trying to assess the needs of autistic adults in the Maritimes. George-Zwicker is an autistic adult herself who works for Autism Nova Scotia. (Radio-Canada )

According to Statistics Canada, in 2011, the unemployment rate of people with disabilities was 11 per cent, compared to six percent for people who did not report having a disability. 

42 per cent of those surveyed with a severe disability were employed, while only 26 per cent of those with a very severe disability were employed. 

Adults face unique challenges 

The co-oranizer of the summit, George-Zwicker says she was told by medical professionals that she was likely autistic when she was in her forties, after she landed in the hospital with seizures. 

She said she's never been able to get a formal diagnosis because it has been too expensive for her to get assessed. 

"When you find out when you're older, you have to actually learn to be autistic, you have to unlearn everything that was told was wrong." - Patricia George-Zwicker

This means she hasn't been able to access any social services, such as disability credits, which has made dealing with her health issues very challenging. 

Organizing and taking part in the summit has been an opportunity for her to learn things she can apply to her own life.

"When you find out when you're older, you have to actually learn to be autistic, you have to unlearn everything that was told was wrong," she said.

"You have to learn to be yourself again."

George-Zwicker said she wants the project to address why it can be so difficult for adults with autism to access "real, livable, sustainable employment," and the support services that they need.

"Having employment that isn't, you know, you just get wash the windows at a car wash," she said.

She added that those support needs can change over time.

Parents participate 

Darlene Pugsley attended the conference with her son, Luke, who has autism.

Darlene Pugsley attended the summit with her autistic son, Luke. (Radio-Canada )

She said Luke has a regressive form of the disorder, so his skills have diminished over time.

But she pointed out that her other son had a professor with autism, so there are varying levels of skills and abilities within people who have the disorder.

"That's when your differences get to be what you can contribute to the world," she said.

"They shouldn't be the things that stop you from participating in the world."

With files from Radio-Canada