Parents say pick up six

Ontario parents of autistic kids push gov't to foot the bill for behaviour therapy past age six — by taking the matter to a human rights tribunal

By Marcello Palmieri

"Do you want some juice?" asks four-year-old Joey as he sits with his mom for some early morning breakfast. But Joey isn't really asking his mom if she wants juice—he's telling her that he'd like some OJ.

Pronoun reversal is just one of many social communication problems that autistic children like Joey face every day of their lives. They can also have difficulties with learning, speech and developing relationships, to name a few. The children are often described as 'living in a world of their own.'

According to the Autism Society Canada, approximately one out of 286 children develop autism — yet the causes are still unknown. Researchers have looked into diet, vaccinations, genes and a host of other possibilities, but according to Dr Lee Tidmarsh, a psychi- atrist at the Autism Spectrum Disorders Program at the Montreal Children's Hospital, "Vaccinations are pretty much finished. The cause for autism is genetic but we don't know exactly which genes are involved."

Research shows that much can be done for autistic kids if the problem is caught early on. Many of them can benefit enormously if they're placed in specialized intervention programs such as Intensive Behavioural Intervention (IBI). IBI is a structured program focusing on teaching small, measurable units of behaviour. Children work with therapists on a one-to-one basis or in a small group setting between 20 to 40 hours every week. It helps autistic kids change their behaviour and promote development by assessing each child's unique strengths and needs.

But many parents with autistic children in Ontario are up in arms because of how the provincial government deals with the IBI funding. Currently, autism programs such as IBI receive government support in Ontario and elsewhere in Canada — but only up to age six. After this, parents who want to continue the program have to dig deep into their pockets to come up with a staggering $50,000 every year for their child — something parents in Ontario want to see changed. They argue that the government could save money in the long run since children would have a much better chance at becoming productive members of society.

HUMAN RIGHTS ISSUE?
On March 4 the Ontario Human Rights Commission reported receiving an unprecedented 121 complaints from parents who allege "discrimination on the basis of disability in accessing services." The Commission decided to refer the complaints to the independent Human Rights Tribunal of Ontario. Its role is to determine whether rights under the Ontario Human Rights Code have been infringed and to decide how to resolve the problem. According to a spokesperson from the Tribunal, "the hearings should be taking place in late May 2004 between the parents and Ontario's ministries of health, education and community."

Dr Tidmarsh has been following the case in Ontario and sympathizes with the families. "Autism is an ongoing disorder and we really need to help the children as much as possible even after age six," she notes. She points out, however, that Ontario isn't the only province losing out. "Here in Quebec, the funding is limited and Ontario is actually one of the better provinces since they put many more millions into autism programs," she says. "There's also the problem of waiting lists for many autism programs. The end result is that a great number of children aren't getting the help early on when they really need it," she adds.

Dr Tidmarsh has been working with autistic kids since 1995 and is part of a new program at the Montreal Children's Hospital called More Than Words, which was created in Toronto back in 1999. It's a twelve-week program that educates parents about autism and how children typically learn language. More importantly, it focuses on what isn't happening with autistic kids. Parents also learn how to pick up cues and use them to stimulate their child. "I like the program a great deal. It's well thought-out and cost-effective," says Dr Tidmarsh.

As for Ontario, Dr Tidmarsh agrees that the government should pony up more cash for the program. "Unfortunately, I don't think that they have the money to do this," she says. Another reason the money isn't being made available is that after age six, there is some doubt as to whether children need the same type of intervention. "It really depends on the child and you have to look at each case separately. But research shows that early intervention is the most critical thing when it comes to successfully helping autistic children," says Dr Tidmarsh.