Aging parents fear autistic adults will be 'forgotten' in 'piecemeal' system

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Aging parents fear autistic adults will be 'forgotten' in 'piecemeal'

system

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.

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.

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.