Ontario youth and adults with autism spectrum disorders often lead lonely, impoverished lives and struggle to find appropriate health and social supports, says a groundbreaking study released Tuesday.

Most continue to rely on their families, who suffer in silence because they feel defeated and disempowered by provincial health and social service systems that have abandoned them, says the report by Kevin Stoddart, director of Toronto’s Redpath Centre.

“Youth and adults with autism spectrum disorders and co-existing mental health or medical needs are among the most marginalized people in Ontario’s health and social service system,” said Stoddart, whose centre is one of the few in the province that offers diagnosis and counselling for this vulnerable group.

The survey of 480 Ontarians between the ages of 16 and 66 with autism spectrum disorders (ASD), is the first since 1991 and the largest ever in Canada to profile the experiences of this age group.

The Star’s Autism Project highlighted the needs of teens and adults with ASD in a series of stories last fall.

An estimated one in 88 Ontarians is on the autism spectrum, a developmental disorder that affects communication and social interaction. They can have a range of abilities and needs, including extreme anxiety, narrow but intense interests, and repetitive or disturbing behaviours such as self-harm.

With as many as 93,412 Ontario youth and adults affected by the life-long challenges of the disorder, it is “vital” that the province be prepared for the mounting need for services and supports, the report says.

“The implications of not responding to this cohort are staggering — for families, secondary and post-secondary education , service providers in the autism, developmental, mental health, social services and medical fields, and all levels of government,” it says.

In interviews with individuals with ASD, their families or service providers, Stoddart’s study documents what many in the field have known for years.

Two-thirds of those over age 19 had annual incomes of less than $30,000.

Fewer than 14 per cent had full-time jobs and just 6 per cent had part-time employment. The rest relied on the Ontario Disability Support Program, the province’s welfare system for the disabled.

Social isolation was a common theme among survey participants, with almost 40 per cent reporting just one social interaction or less per month. Fifteen per cent had no regular, structured activities outside of home.

Only half of those with “high-functioning autism” or Asperger syndrome were diagnosed before age 21.

More than 60 per cent need regular support to access services. Almost one-third said they felt they had an undiagnosed mental health disorder.

Last October, the Ontario Ombudsman launched an investigation into services for adults with autism and other developmental disabilities, after several desperate families complained that their loved ones risked being sent to homeless shelters or jail due to lack of care.

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In December, Children and Youth Minister Laurel Broten announced the creation of a blue-ribbon panel to streamline autism services.

“For years we have been hearing from families about the gap around mental health services, meaningful vocation, housing and daily activities,” said Marg Spoelstra of Autism Ontario, the province’s largest parent advocacy organization. “All of it needs to be addressed. And now we have clear evidence to back up those concerns.”