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Mar. 30, 2003. 06:37 AM

Eves shuts door on thousands of autistic children

MICHELE LANDSBERG

Michael Wagman's parents are dreading the birthday present that Premier Ernie Eves has promised their son. They are haunted by it; it wakes Lillian Wagman at night with fears for her child's future. Instead of the cake and streamers and high-spirited games that greet the birthdays of most 6-year-olds, Michael will (by government decree) lose his lifeline on that special day.

Diagnosed by the age of 2 as severely autistic, Michael qualified for public funding for his therapy. That therapy will end on his sixth birthday, because the government refuses to pay for autistic children who reach school age.

The treatment seems like a miracle to Lillian.

"I knew something was wrong, and I knew it wasn't because I was at fault," Wagman told me. "He had no speech; he would sit for an hour banging a soda can up and down, or spinning it. He wouldn't follow a pointed finger, or respond to external things ..." His tantrums were exhausting. A trip to the shopping mall was impossible. Anything might trigger a "meltdown," as Lillian calls them.

Now, after 2 1/2 years of intensive one-on-one therapy with a worker who sees him daily at home, Michael is bright-eyed and verbal. He eats a wide range of foods (a triumph for a child like this), jumps up to meet a visitor with a hug, a grin and a spate of enthusiastic greetings, and, most of the time, resists autistic behaviours. Before, left to himself, he would sink into a private world, compulsively counting on his fluttering fingers. Now, at a gentle reminder from his therapist, Eti Hikriy, ("Hands, Michael!"), he immediately clasps his hands in his lap, looks up with a smile and begins singing a children's song.

The treatment is incredibly painstaking. For three hours a day, Eti works with Michael to break down simple preschool tasks into tiny segments, until he has mastered them. I watched while she coached him through the drawing of a cat's face: "Up and down," she instructed, as Michael traced the shape of an ear. She consistently keeps eye contact with him to prevent his drifting away. Instructions are kept pared down and ringingly clear.

Autism, once blamed on cold "refrigerator mothers" in the misogynist thinking of the 1950s, is now widely accepted as a neurological disorder causing lifelong behavioural and learning difficulties. It can be treated with a program of intensive, one-on-one care. Michael's progress (almost toilet-trained; able to sit in the circle and clap and sing with other children at nursery school; focused; verbal; expressive) shows just how stunningly effective this daily treatment can be. And because it's a medically diagnosed illness — a condition, say, like blindness or cerebral palsy — you'd think there would be no question about the public responsibility to provide treatment under our universal systems of public education and health care.

Not so. The Conservative government of Ontario boasts of the money it provides for autism care, but there are about 900 preschool children on the waiting list for the kind of Intensive Behavioural Intervention, or IBI, that Michael receives. Some of them reach their 6th birthday before their turn arrives.

No wonder Premier Eves insisted on presenting his budget in a private auto company facility, where legislators couldn't question him. He can cough up $300 million to subsidize parents who prefer private schools, and $250 million of our money to promote his party. But the relatively paltry sums his social service minister, Brenda Elliott, has promised for autistic children — $78 million by 2006 — fall far short. Even then, of that money, not one cent will be provided for IBI treatments beyond the age of 6 for any Ontario child. Margaret Whelan, director of the Geneva Centre for Autism (an IBI service provider and parent resource centre) estimates that one in 250 children is born with some degree of autism, and there are 5,700 school-age children with autism in Ontario, most receiving no special training.

How democratic is that? The pampered, the privileged and the pious will get extra millions to educate their children outside the public system, while Eves and Elliott slam shut the schoolhouse doors to thousands of autistic children. Elliott's announcement of extra funding last fall prattled on about "new services" for autistic children over the age of 6. "While these are not IBI services, they will be designed to help these children grow and learn."

Doesn't that remind you of the smarmy jargon this shameless government used when it blathered on about "The Early Years" — its own smoke-and-mirrors code language for stealing public money from daycare centres to open "information kiosks"?

According to education sources, some of the new $34 million will go to boost out-of-school special education classes. An autistic child will qualify for one year in such classes before being mainstreamed.

Across the country, many parents are besieging courts and human rights commissions, arguing for an end to such discrimination against their vulnerable children.

But now Lillian and Martin Wagman have even greater cause to tremble for their family's future. Their 2-year-old son, David, has just been diagnosed with the same genetic glitch. He is now on the waiting list for his government-approved second diagnosis and will then wait for his chance at IBI. The therapy is said to be most effective when started in the preschool years.

Every parent expects to have a healthy child. Most, when faced with agonizing difficulties, swallow their grief and readjust their sights. When asked, Lillian Wagman says that what she hopes for Michael is simply "an independent life, and some inner peace and happiness."

As for Slick Ernie and his robotic cabinet ministers, it's an open question how long they can escape the wrath of parents they have so deeply wronged.

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Michele Landsberg's column usually appears in the Star Saturday and Sunday. Her e-mail address is mlandsb@thestar.ca

Additional articles by Michele Landsberg

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