Familes struggle to help adult children and sibblings with autism spectrum disorders

In the early 1990s, when autism spectrum disorders were even less well-understood than today, most families with autistic children suffered in silence and isolation.

 

One Toronto woman says her brother never received help in school or elsewhere after he was diagnosed at age 13 with Pervasive Developmental Disorder - Not Otherwise Specified, (PDD-NOS), a condition on the autism spectrum.

Her brother is now an anxious and angry 33-year-old who until recently lived at home where he terrorized his parents by throwing dishes, upturning the family dinner table and attacking his older brother.

"Growing up, it was something we never spoke about," says the woman, who does not want to be identified to protect her brother's privacy. "He was never able to carry on a conversation and we all just put up with his erratic behaviour."

Last winter at a family gathering, the woman says her brother pushed her husband through the living room window and the family finally called police for help.

Her parents have rented an apartment for her brother. Police have issued a peace bond between the man and his family. But the woman is worried about her brother's future.

"He needs help," she says. "But we don't know how or where to get it."

Kerry's Place for Autism, which serves about 7,000 children and adults with autism spectrum disorder (ASD), has met the man several times. But the agency can't help him because he is not disabled enough to qualify for Developmental Services Ontario, a provincial agency that helps adults with autism and other developmental disorders.

He doesn't qualify for the federal Disability Tax Credit or the Registered Disability Savings Plan. And his behaviour makes it difficult for him to get help from justice and health-care systems.

Glenn Rampton, CEO of Kerry's Place, says this woman's brother is a classic case of someone with ASD falling through the cracks.

The health ministry doesn’t see him as a mental health problem, the ministry of community and social services says he is too intelligent to receive its services. But both need to take responsibility, Rampton notes.

If this man ends up in jail, he will cost taxpayers much more, he warns.

“There has got to be somebody who manages people who fall through the cracks,” he says.

The provincial Ombudsman can advocate for these people and raise red flags as it did in its annual report last year, but Rampton says the problem needs more than advocacy. It needs service.

In 2008, Autism Ontario released Forgotten, a report calling for a provincial strategy to deal with adults with Autism and Asperger's.

Four years later, families like this woman's -- and many others -- are still waiting.