A few months ago, Zara handed me an old children’s storybook, of which only the covers remained.
“Read me a story, Daddy,” she said.
“What story, sweetie?” “The one in my imagination.” Which is not the only five-syllable word in her vocabulary. At the cottage two years ago, when she had just turned two, I was putting her in her stroller for our morning walk down to the bridge.
“We’re going for our morning constitutional,” she declared. Her mother explained that back home, she would take her out for their “afternoon constitutional.”
This summer, at age four, when she caught a toad on the beach at the lake, she and her Mummy made a home for it — turf, sand and water in a Frisbee, all in an inflatable wading pool.
When Toadie disappeared from view, Zara said: “He’s camouflaging in the habitat.”
She has a photographic memory.
Sitting out in her grandparents’ backyard last summer, I pointed out a bird that flew by. “Look at that little yellow bird,” I said.
“Daddy,” she said, “that’s a goldfinch.”
Her grandmother had been reading an illustrated book of birds with her, and she knew all the ones in the backyard.
It also turns out that she has perfect pitch, which is one of the reasons why she can’t stand people singing off key. At her third birthday party last year, she covered her ears and began to scream when guests started to sing Happy Birthday.
From the age of two and a half, she began exhibiting many other sensory issues. She became extremely sensitive to sound and light, as well as touch. Once, when I was helping her into her car seat, my cheek brushed up against hers. “Oh, Daddy,” she exclaimed, “you hurt me with your beard, but I love you anyway.”
This is part of a diagnosis last fall that Zara has a moderate case of Asperger’s syndrome, which is on the autistic spectrum disorder at the high-performance end of the scale.
Zara has the vocabulary of a child perhaps twice her age.
She has behavioural issues familiar to parents of Aspies. She has obsessive interests: for six months, she believed she was a bunny; currently, she will tell you she’s a teenager.
At her preschool, she would not join circles, and preferred to do her own thing. She can be quite obstinate about getting her own way, and sometimes has meltdowns when she doesn’t. She can say things that are very funny, but socially inappropriate.
One Canadian child in 88 has ASD, and Zara is one of the fortunate ones at the high end of the scale. All these children have special needs that are not covered by their health care.
Getting the kind of developmental therapy these kids need is expensive. Zara’s mother recently enrolled her for daily half-day sessions at a privately run exceptional-learning centre near their home in the Greater Toronto Area. It’s very expensive — like sending your kid to an Ivy League college, in pre-K. Yet at least, between us, we can afford it.
But what about the parents who can’t afford therapy for children with special needs? And what about their kids, who could consequently fall between the cracks? The obvious answer is that we can help these families now, and help their children become productive, and potentially brilliant, members of society. Or we can pay for the costs of looking after them later.
Margaret Clarke, a leading authority on autism, and her colleagues David Nicholas and Herb Emery at the University of Calgary, have written in a Policy magazine article that the “net present value at birth of the incremental costs of supporting the ASD population over its neurotypical peers in Canada can be estimated at $3.4 billion for each annual birth cohort.”
They also note the employment rate for persons with ASD “ranges in studies from 10 to 55 per cent.”
Canada’s autistic children and their families need more of the kind of support offered in the 2013 federal budget — such as the $222 million earmarked for training, including persons with disabilities, and other low-cost initiatives such as the $15-million Accessibility Fund for persons with disabilities.
And while health and education are in provincial jurisdiction, we need to have a national conversation about autism. The coming speech from the throne would be a good starting point.
L. Ian MacDonald is editor of Policy magazine.
