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 autism non-profit organizations. I expected a 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 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 (my own experience), often in the tens of thousands of dollars per year. Many have to refinance homes or sell 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 reports since – is that autism families in Canada are struggling, diagnosed cases of autism are on the rise, and 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 (IBI) 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 that 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.
It’s not an exaggeration to say we have an autism services crisis in Canada. So what can be done? Plenty.
Evidence shows proper health and educational supports for those affected by autism pay off. Early intervention heads off more expensive and extensive supports that are needed later in life if it 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. And we are failing them.
The Harper 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.
For starters, the Trudeau 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.
Kathleen O’Grady is a Research Associate at the Simone de Beauvoir Institute, Concordia University and mother of two sons, one with autism.