PEI

'There was nothing': Autism advocate looks back on decades of change

When Carolyn Bateman, who was named to the Order of P.E.I. Wednesday, moved to the Island in the late 1980s with a son recently diagnosed with autism the future looked grim for her child.

New Order of P.E.I. member Carolyn Bateman has seen big improvements

Carolyn Bateman, co-founder of the Autism Society of P.E.I. and the Stars for Life Foundation was named to the Order of P.E.I. this week. (Matt Rainnie/CBC)

When Carolyn Bateman, who was named to the Order of P.E.I. Wednesday, moved to the Island in the late 1980s with a son recently diagnosed with autism the future looked grim for her child.

"There was nothing," Bateman told Island Morning host Matt Rainnie of the resources for autistic children in the schools at the time.

"There just weren't any. I could only find two other families that had diagnoses of autism."

Adam was diagnosed with autism in 1986 when he was four, and was only a couple of years into school when the family came to P.E.I. His mother was determined to make life on the Island work for him. She co-founded the Autism Society of P.E.I. with Joan teRaa, also the mother of an autistic son.

Bateman and teRaa travelled to autism conferences, and brought information back home.

"We'd tell everyone in the school system about it so we could make a better life for them in the schools," said Bateman.

Early advocacy

In 1991, Bateman appeared on CBC-TV's Compass with Adam, demonstrating for Islanders how facilitated communication worked for people with autism.

A documentary from 1991 on autism on P.E.I. 9:56

The changes in the schools since those early years, she said, have been amazing. Where there was nothing, there are now autism specialists in the schools and specially-designed programs.

"It's great, but like everything it has to grow and improve," she said.

But as Adam and teRaa's son, Jeremy, began to grow older, they realized they would soon be facing another challenge.

Stars for Life

While support was improving in the schools, the question of what would happen after high school remained.

Once the kids finished the school system they fell into a pit.- Carolyn Bateman

In 2002 they founded Stars for Life, an organization designed to help young adults with autism live meaningful lives.

"Once the kids finished the school system they fell into a pit," said Bateman.

"We didn't integrate these kids in school just to have them fall off a cliff at the end of the day."

Bateman and teRaa were also aware something needed to be put in place so their sons could be supported when they couldn't support them anymore.

When teRaa died, that question took on more of a sense of urgency.

"We told her we would make sure Jeremy had a great place to live and we were determined to make it happen," said Bateman.

It took some time to raise the money needed, but the foundation opened Stars for Life House in 2011. Stars for Life also runs a resource centre for families of people with autism.

A growing issue

With one in 68 children being diagnosed with autism now, Bateman said society needs to become more aware of what they can contribute.

Some of these guys with Asperger's could be your best employees.- Carolyn Bateman

"We need to look at jobs for these people. Even some of our most severely disabled ones can work and can contribute to the community," she said.

"Some of these guys with Asperger's could be your best employees, your most faithful, your most reliable, especially for those tasks that are tedious and the rest of us get bored with. They tend to love [it]and can do phenomenal jobs."

Adam now has a part-time job and volunteers in the community. He comes back to her home for dinner every second day.

But she still worries about him and the future of Stars for Life. She recognizes both Adam and the foundation are still heavily dependent on her, and she needs make both ready for a future without her.

She said receiving the Order of P.E.I. is a great honour, but it does not mark the completion of her achievements.

"I haven't arrived yet. There's so much work to be done," she said.

With files from Island Morning