Over a year ago, I was invited to celebrate World Autism Awareness Day on Parliament Hill. It was attended by a dozen or more Senators from both major parties, political staffers and invited guests mostly from an assortment of autism non-profit organizations. I expected a somewhat predictable ‘feel good’ event about how far we’ve come and how far we have still to go.
But an hour later there weren’t many dry eyes in the chamber.
It turns out, many of the politicians who decided to join the event that day had personal experiences with autism. One Senator spoke at length of his daughter who struggles to get adequate services for his grandchild with autism, and how challenging it has been — economically, physically and emotionally — for the whole family. He cried openly.
Another Senator spoke of a family she knows that is struggling with long wait times for essential services, such as speech or behavioural therapy. More than one participant spoke of the difficult choice families have made to uproot from jobs and life-long communities and move across the country to Alberta or British Columbia where autism services are often more readily available and flexible, particularly if a family happens to have more than one child on the autism spectrum.
Others spoke of the economic burden of pursuing private therapies — funded out of pocket, often in the tens of thousands of dollars per year — resulting in refinancing homes or selling them altogether just to get their child with autism the basic supports they need to learn and thrive.
What became clear that day is something I’ve heard autism champion, Senator Jim Munson say before: autism doesn’t affect Liberals or Conservatives or NDPers. It’s an equal opportunity neurodevelopmental disorder that affects Canadians across the political spectrum and clear across the country.
What was also clear that day — and from a number of regional reports since — is that autism families in Canada are struggling, that diagnosed cases of autism are on the rise, and that most provinces are not able to keep up with necessary services.
According to a recent survey from the Canadian Autism Spectrum Disorders Alliance (CASDA), almost three quarters of parents of preschoolers in Canada with autism wanted, but did not receive, early intensive behavioural intervention for their child — one of few interventions for autism with solid peer reviewed evidence.
A similarly troubling report, released last month from the Ontario Auditor General, reveals that in some jurisdictions in the province, there are more children waiting for autism services than receiving them, with more than 16,000 children on wait lists that continue to balloon.
This has largely been my own experience in Ontario. Despite being a proud advocate of our universal health care system, which is intended to serve those in need and not just those with the ability to pay, I found it failed me when I needed it most. When my son did not meet traditional developmental milestones, I discovered I would have to wait years to get a diagnosis in the public health system. We paid for a private diagnosis instead, but then we still had to wait more than two years for publicly funded behavioural therapy, which was provided to us for only six months.
It was all too little, too late. Like so many other families affected by autism, instead of just waiting, we paid for our son’s essential health services privately — and he blossomed as a result. We are one of the lucky ones who could afford to do so, though not without struggle.
Dire headlines on gaps and lacks in autism services are recurrent in the media from multiple regions across the country; you can almost recycle the headlines and simply rotate the province named. It’s not an exaggeration to say we have an autism services crisis in Canada.
So what can be done? Plenty.
Evidence shows that proper health and educational supports for those affected by autism pay off. Early intervention is key and heads off more expensive and extensive supports that are needed later in life if early intervention is not provided. It makes economic sense, in other words, to provide autism services early.
Kids with autism are not lost causes, they are full of potential. We are failing them.
The last federal government made a good start establishing an Autism Spectrum Disorder Working Group to bring together those working on the issues across the country to discuss key concerns and share best practices. But much more federal support is required to make things better — now — for Canadian families affected by autism.
For starters, the new Liberal government could dust off the excellent cross-party Senate report — aptly titled — Pay Now or Pay Later: Autism Families in Crisis from 2007 and get to work. It’s number one recommendation? A comprehensive national autism strategy.
We’ve waited almost a decade. Now is the time for the federal government to bring together the brightest minds in the country on the issue and enact a federal strategy to give our kids with autism the services they need to survive and thrive in communities across the country. It’s not only the right thing to do, it’s the smart thing to do.
Kathleen O’Grady is a Research Associate at the Simone de Beauvoir Institute, Concordia University, the Managing Editor of EvidenceNetwork.ca and a mother of two sons, one with autism.
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