I didn’t, either.
You see, I’ve been under the mistaken assumption that my children’s ongoing inability to process questions, manage emotional responses, and be in any way organized was due to the different way in which their brains are wired. Their total meltdowns over unanticipated transitions (and their extreme discomfort even when they know what’s coming)? A quirk. One’s inability to plan ahead well enough to handwrite a sentence without herculean effort? Obviously just a lack of practice. Their inability to look me in the eye? I’m obviously just not pushing them hard enough.
That’s what Port Moody-Westwood-Port Coquitlam Conservative Member of Parliament James Moore would have me believe, anyway. When Moore was asked at an all-candidates meeting whether he would publicly commit to support legislation which will amend the Canada Health Act to include autism treatment under Medicare, he said no. And not only did he refuse, but he took it one step further: autism is not a disability, and the Canada Health Act is not for special interest groups.
I’ve been called out for being part of special interest groups my whole life. It’s dismissive, and it’s a weapon most often used by the Right to discredit the valid concerns of people on the margins.
Families affected by autism are on the margin. In spite of affecting 1 in 165 individuals (over 204 000 across Canada), families of children with autism are unable to access treatment universally. Faced with waiting lists of a minimum of 18 months for provincially covered care, parents have turned to private care providers for Intensive Behavioural Intervention for their children. Families are expected to pay, out of pocket and without any hope of reimbursement, $60 000-$100 000 per year for therapy that is covered by provincial and territorial health care plans – as long as you’re willing to wait, have it delivered in the wrong language (English/French), or deal with half a program because it’s got to be better than nothing.
If you choose to wait (or, like many people, can’t afford the options that come from not waiting), if your child with autism turns six before getting treatment, you’re out of luck with the health care system. School-aged children access their treatment through the education system. School boards have had to contract out Occupational Therapy services and have children with all communication disorders relying on the same speech-language pathologists. Teachers get educational assistants part-time (if at all) in mainstream classrooms, and their classes are filled with children who have several different exceptionalities. These teachers are expected and required to accommodate, modify, or create alternate curriculum models for students with not only autism, but learning special interests, medically fragile special interests, developmentally specially interested, and children with behavioural special interests.
Autism has a clock associated with it. The sooner a child is diagnosed and a treatment plan is developed, the better chance that child will learn to communicate effectively and successfully. I’m not talking about a cure. Folks with autism will have it forever, in varying intensities, but early intervention offers an opportunity for children to develop better adaptive skills and allows parents to feel supported in their journey.
I’m not convinced that the limited IBI programs offered by our health care system are the answer for every family. But even if the treatment helps half of the children diagnosed with autism grow up to be adults with autism who can be confident and happy and successful (in whatever way one wishes to define that success), it should be a treatment covered by Medicare, enshrined in the Canada Health Act.