Rising Costs, Waiting Lists Can Cause Nightmares for Parents of Autistic Children

By Linda Nguyen , Canwest News Service October 17, 2009

OTTAWA – All the signs had been there.
When Suzanne Lanthier’s three-year-old son, Scotty, played with his toy trucks, he would always turn them upside down and spin their wheels. The toddler would never stack his building blocks into a tower; instead he’d line them up one by one, with the perfect space in between each block.

And to their delight, her son would be able to sit and watch the same Sesame Street video over and over. For hours.

“He was our first and only child. We thought: ‘Oh how marvellous,’ ” said Lanthier, the executive director of the international foundation, Autism Speaks. “We were so impressed at how Scotty could entertain himself and be completely content.”

Soon after, a pediatrician diagnosed Scotty Lanthier with autism spectrum disorder (ASD).
It’s a common story.

Statistics released last week from the U.S. Centers for Disease Control show a growing prevalence of childhood autism. It found that as many as one in 91 children – including 1 in 58 boys – in the U.S. have been diagnosed on the autism scale.

In Canada, that figure is similar, with some studies pegging it as high as one in 147 children.

ASD is a group of developmental disabilities that cause social, communication and behavioural problems. The disabilities include autistic disorder, Asperger’s syndrome and pervasive developmental disorder. The cause of autism is still a matter of debate.

Yet the tragic stories about the stresses related to dealing with autism – and the lack of supports available – continue to emerge.

Late last month, a 39-year-old father and his 11-year-old son were found dead in their north Edmonton home in an apparent murder-suicide. The man’s ex-wife said he had felt overburdened with the limited amount of help available to him and his autistic son. The two died from carbon-monoxide poisoning.

Lanthier said feelings of isolation are a reality for most parents with special-needs children.

“You can live in the biggest city in Canada and still feel very isolated,” she said. “Your life changes. It’s an incredible amount of stress on families. Families are burning out.”

One of the major issues with autism funding is that it varies by province.
The B.C. government provides up to $20,000 a year to families with autistic children under the age of six to help pay for programs like behavioural consultants, speech and occupational therapists and physiotherapists. When a child hits six years old, that funding drops down to $6,000. The reasoning, used in most provinces, is that the school system will help offset the need for additional therapy.

Manitoba will fund up to $64,900 a year until the child reaches the age of three. From age three to six, that funding is capped at $48,800.

In Alberta, there is no cap on the amount of money a family can qualify for.

On Prince Edward Island, a variety of education, social and health programs are offered.

In the Northwest Territories, autistic children qualify for disability programming, which has no limit on funding. A territory spokeswoman said that there were only an estimated 60 children who have been diagnosed with ASD. It’s the same story in Nunavut. In Quebec, the province will pay $171 a month to a child with a disability, including autism.

Specific funding information for other areas was not immediately available.

Some provinces prefer families use the funding toward a list of approved therapists and programs. Others allow families the discretion to use the money as they please.

Lanthier said the list of essential services required by her son – diagnosed on the high-end of the autism spectrum – is long.

Last year, she spent $80,000 on specialized schooling and speech, occupational and behavioural therapy.

But the financial burden of raising a special-needs child is not the only obstacle these families face. They also have to deal with long waiting lists for a diagnosis, to get into programs and qualify for funding.

These stresses can lead to emotional and mental strains not only on the child and their siblings but also the parents – who often see their marriages crumble as they struggle to cope.

“These parents are in a panic. It’s like the government is holding a carrot out to you saying, ‘We know you need these services but we’re not going to give them to you for 2 1/2 years,’ so you’re mortgaging your house and really compromising your quality of life, your family life,” said Lanthier. “All you know is that you have to do everything you can for your child.”

Ontario NDP Leader Andrea Horwath said it’s unfair for some provincial governments to assume that autism funding is only needed until a child reaches the age of six.

“The reality is that parents dread the fact of having their children go to school, into an education system where they are getting the bare minimum,” said Horwath, who has been championing for more funding for years. “These parents are literally fearful of exposing their children to all kinds of setbacks.”

Horwath said some families have also been forced to move to another province because funding was better elsewhere.
“Families are bankrupting themselves to get access to services for their children,” she said. “You see the great deal of pain and anguish that they go through to try to provide what should be expected services to their children. Families break up because of pressure and the stress. It’s very tragic.”

Tina Fougere has no doubt that her 18-year-old son, Jeremy, who suffers from ASD, was able to receive provincial funding and resources because of her repeated demands.

“I wear proudly on my shoulder that I have a big mouth. My son wouldn’t be here if I hadn’t strongly advocated for him,” said Fougere of the Ontario-based Canadian National Autism Foundation. “I always say to people that ‘Yes my son does have autism, but autism doesn’t have him.’ ”

Fougere said a wrong look, a bad mood, someone singing aloud could instantly send Jeremy into a meltdown.

“As soon as your child is diagnosed, that is a common thread, you feel abandoned, alone, a sense of depression kicks in.
You feel that nobody is looking out for you,” she said. “You are essentially left with the 24-hour supervision of your child and it’s not just the autism you have to deal with, but other issues. Like my son lives with seizures. He’ll show no signs, he just drops. These are the things that parents live with.”

Despite the tragic stories, Canadian families need to remember that life for families struggling with autism can still be good, said Fougere.

“It’s about time we, as a community, started talking about the good that our children have. There is a lot of good,” she said. “My son is a success story because I’m not willing to give up. There is light at the end of the tunnel. It’s a hard road. It was a struggle and a fight, but we made it.”

© Copyright (c) Canwest News Service

Reproduced from http://www.calgaryherald.com/health/Parents+autistic+children+face+many+nightmares/2117232/story.html