Waiting for a National Autism Strategy

By: Andrew Kavchak

Narrated by: Virtual Voice

Parents of children diagnosed with Autism Spectrum Disorder (ASD) have spent over two decades lobbying for the federal Government of Canada to get involved in the autism file. The federal Government routinely ignored the pleas for help. However, on May 10, 2022, the Canadian Academy of Health Sciences provided the federal Government with a report on autism that is expected to be used as a reference upon which the Government will develop a first-ever National Autism Strategy. Will the Government develop and implement a National Autism Strategy that will be a meaningful one and have a significant impact on the lives of Canadians with autism and their families? Or will be it a temporary band-aid solution whose impact will be marginal? To make the strategy meaningful, what should its components be? These questions are at the heart of a debate that could have profound consequences for the autism community across the country.

The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) provides the criteria by which to diagnose ASD which involves persistent deficits in social communication, interaction, and the presence of restricted and repetitive behaviours. Some people who are diagnosed with ASD are only mildly affected by the disorder and are relatively high-functioning. However, those at the end of the spectrum are severely affected by the disorder, are low-functioning, and require 24/7 care and assistance.

The disorder is a lifelong disorder and the needs of individuals vary at each stage of life including diagnosis, access to treatment, special education, day programs for adults, employment opportunities for those who can work, and appropriate housing.

Parents of children with ASD frequently encounter unconscionably lengthy wait lists for programs and services at every stage of their children’s lives which often turn out to be inadequate to meet the autistic person’s needs. When the CAHS delivered its autism report to the federal Government there were over 53,000 kids with autism in Ontario that were on the waiting list for access to treatment. Many of them had been on the waiting list for years.

Waiting for a National Autism Strategy provides an outline of some key challenges faced by the autism community when encountering inadequate provincial programs and services. The book provides a summary history of the milestones in the struggle to prompt federal Government involvement in the file as well as an assessment of the CAHS autism report. It concludes with proposals relating to treatment and housing for the severely disabled that should be incorporated into any future National Autism Strategy to ensure that it will have a significant impact on the lives of Canadians with autism who are most severely affected by the disorder and their families.

The Foreword is by Jamie Peddle, founder of the Canadian Autism Treatment for Medicare Coalition.

Andrew Kavchak studied political science (M.A., Carleton University) and law (LL.B., Osgoode Hall Law School).