Opinion: Three things everyone should know about autism in Canada

Until recently, the federal government has done little to address the crisis faced by autism families across the country and has left the issue to the provinces to manage. But things are starting to change — for the better.

Earlier this month, the federal government appointed an “Autism Spectrum Disorder Working Group” with a $2 million budget to develop a plan for a “Canadian Autism Partnership” that will address autism research, early detection, diagnosis and treatment, among other issues.

It’s a good step forward, but much more is needed, particularly on the health and educational services side of the issue, so that real families get real help, now.

As governments across the country tackle the gap between need and resources, here are a few things everyone should know:

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  1. Autism is not a mental illness or a learning disability. Autism is a neurodevelopmental disorder that is characterized by impaired verbal and social communication; rigid, restrictive and repetitive behaviours; uneven intellectual development; sensitivity to sensory input; challenges with fine and gross motor skills, among other characteristics.

Autism is more accurately referred to as “autism spectrum disorder” (ASD) because each person on the spectrum can exhibit a differing array of these characteristics with wide-ranging severity.

  1. The rate of autism in Canada is not yet fully known, but we have recent estimates. Research from the Centers for Disease Control and Preventionestimate1 in 68 children in the United States has ASD. Since autism is five times more prevalent in boys than girls, they estimate 1 in 42 boys and 1 in 189 girls has ASD in the U.S.

So what are the rates in Canada? And are they on the rise?

“Our best estimate at this time is that ASD affects 1 in 94 children six to nine years of age,” according to Dr. Hélène Ouellette-Kuntz, Professor in the Department of Health Sciences at Queen’s University and Director of The National Epidemiologic Database for the Study of Autism in Canada (NEDSAC). The estimate is based on diagnostic and services data from Newfoundland and Labrador, Prince Edward Island and Southeastern Ontario from 2003-2010.

What we know from NEDSAC published materials suggests that autism rates are on the rise in Canada, though they vary widely across the studied regions. Even when you factor in increases due to the identification of previously undetected cases and other factors, “we cannot rule out the possibility of a true increase in incidence,” says Ouellete-Kuntz.

  1. Families often wait several years to access autism services covered by the public health-care system. It is not uncommon for families to wait several years to receive a diagnosis of autism for their child from publicly funded health services in most provinces. Once a child is diagnosed, interventions with a strong evidence base, such as behavioural therapy, speech therapy and occupational therapy, have wait times of several months up to several years in most places across the country. Once services are received, families have access to these therapies for only limited time periods and often beyond the window of time most experts believe optimal.

The wide range in disparity of publicly funded services for autism across the country has even generated a kind of “medical migration” with several published accounts of families leaving their home provinces to move to Alberta or British Columbia, where services are more readily available and more flexible.

It is also no longer uncommon to find Canadian families using crowd sourcing campaigns to fund their children’s therapies.

By KATHLEEN O’GRADY,

 MONTREAL GAZETTE

Published on: July 28, 2015 | Last Updated: July 28, 2015 1:17 PM EDT

Kathleen O’Grady is a research associate at the Simone de Beauvoir Institute, Concordia University and managing editor, EvidenceNetwork.ca. She is based in Ottawa and has two young sons, one with autism. \