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Aging Parents Fear Autistic Adults Will Be 'Forgotten' In 'Piecemeal' Syste

October 15 th, 2008

TORONTO - Ontario has a "piecemeal" approach to treating autistic adults that must be dramatically changed to support the estimated 50,000 adults suffering from the developmental disorder, an advocacy group said in a discussion paper released Wednesday. The report by Autism Ontario, entitled "Forgotten," said the government needs to form a framework for dealing with adults suffering from autistic spectrum disorders.

Howard Weinroth, co-chair of the committee that compiled the paper, said autistic adults and their families or caregivers need educational, employment and social opportunities, as well as supported living options.

"Failure to act now to alleviate the inadequacy of resources to this sector can only increase the growing cost to health care, social services and the educational system, along with lost productivity of individuals with autism," Weinroth said.

The lack of support is particularly daunting to aging parents who care for adult children with autism.

Richard Hales's son Liam will soon turn 20 years old. Intellectually, he is gifted. He also has Asperger's syndrome, a type of autism spectrum disorder, and suffers from debilitating anxiety that requires constant care.

But the necessary programs and supports aren't always available, Hale said, describing the difficulty in finding a dentist willing to treat his son, as well as months spent waiting for an anesthetist to be available.

"Currently in Ontario there is a huge gap between which supports and services should be available to adults with autism spectrum disorder and which ones actually exist," Hales said.

"It is this gap that causes my wife and I to fear for Liam's well-being when we are gone, and it's a fear we share with other parents of adults with ASD."

Jeanette Holden is a Queen's University autism researcher whose 55-year-old brother suffers from the disorder. Years ago, she moved him and her mother from Vancouver so she could take over his primary care.

In May of last year, however, Holden was diagnosed with an acute form of leukemia.

"I spent a month in the hospital and the only thing I could think of was what was going to happen to my brother now," Holden said.

"About a month after I finished chemotherapy, my mother was diagnosed with breast cancer. (His) two lifelines to the rest of the world were being held back."

Autism Ontario's paper called for a provincial framework that would include more programs, funding that can't be "clawed back" through cuts, and better access to professional supports such as psychiatrists, doctors and dentists.

The report also said there needs to be standard eligibility criteria for adults with autism spectrum disorder, instead of the current arrangement where, in some regions of the province, they don't qualify if their intelligence is too high.

Many people with autism have average or above-average intelligence but struggle with communication and social interaction.

The report also recommends the creation of a "knowledge exchange centre" that could guide research, educate caregivers, provide specialized information and track services.

Community and Social Services Minister Madeleine Meilleur said many concerns included in the report are being addressed by the Services for Persons with Developmental Disabilities Act, or Bill 77, which received royal assent last week.

"I look at their recommendations and quite a lot of the recommendations are the same recommendations we had when we did the review in preparation of Bill 77," Meilleur said.

She said the ministry took the recommendations "very seriously" and would study them and come back with an answer "sooner rather than later."

The act would eliminate the low-intelligence criteria to receive funding, she said.

Weinroth said the act is a step in the right direction.

"There are a lot of questions that still remain," Weinroth said. "There's a lot that isn't in Bill 77 to address our concerns."

Autism is a developmental disorder of the brain and causes symptoms such as difficulty communicating and interacting socially and unusual, repetitive behaviour.

The range of impairment from the disorder, which has a prevalence of about one in 150 among children, runs from mild to highly debilitating.

Reproduced from http://canadianpress.google.com/article/ALeqM5jt8T249GMMUag-XsES1SejFdrt4Q

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