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.
It's not an exaggeration to say we have an autism services crisis in Canada.
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.
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Say “hi,” introduce yourself, ask questions... just be yourself. And don’t be horrified if your child asks why our child looks different or "talks funny." Instead of shushing them and pulling them away use it as a teachable moment. You can even ask us to help. “You can tell if someone has good intentions,” shares Louise Kinross, the mother of a young adult with a rare genetic condition and creator of the BLOOM blog.
Parents of children with special needs appreciate the help or will tell you if they don’t need it (please don’t automatically step in and start wheeling our kids around, though). And if you’re the friend of someone who has a child with special needs offer a cooked meal, a coffee date or an hour of babysitting. Our stress levels are sky-high and we always appreciate an offer or real, specific help.
Staring is rude, but if you feel compelled to stare at least offer up a smile. But don’t worry if you just happen to be staring in my kid’s direction while in a sleep-deprived, zombie-like state -– we’ve been there and we won’t hold it against you.
“A friendly smile and/or a hello is so much more welcome and goes a long way in breaking the ice,” says Liza Sneyd, mom to two children with cerebral palsy. And teaching your child to smile is a lot easier if you’re flashing us a grin yourself.
Invite us to playdates and to birthday parties. If you’re not sure how to accommodate our child or how they can participate in activates, just ask us. We’re usually experts in modifying or figuring out creative ways for our kids to enjoy the things that other kids like.
“Hold the door for my daughter instead of letting it slam shut on her and her wheelchair,” says Lana Jones, who has a teenage daughter with cerebral palsy. “Don’t step in front of my son’s wheelchair so he can’t see,” shares Barb DeRoo, mom of a son with cerebral palsy and creator of Zach’s List.
Despite the fact that I get asked to write articles like this, I am not a perfect parent. My kid can get on my very. Last. Nerve. She can also warm my heart like no other -– just like any kid. When you say: “I don’t know how you do it,” my answer will always be: “It’s simple. I do it because this is my child and I love her. It is all I know.”
More often than not parents of kids with special needs have a strong belief in the strength and resilience of their kids. Our kids face insurmountable odds, often with a smile on their face and a lot of strength in their hearts. They are super heroes, not victims. And while you’re at it remember that our lives may have some extra challenges, but we still face the same difficulties you do. Treat us like parents -– it is what we have in common.
Don’t use the word retard (replace it with ridiculous instead). Don’t ask: What’s “wrong” with a child? Initiate age-appropriate conversations and don’t automatically use baby talk. Use "people-first" language that puts the person before the disability (e.g a child with autism, not an autistic child). It’s not about being politically correct, it’s about the fact that words matter. After all you are reading this, right?
Kindness isn’t sympathy or pity –- it is being a good person. Teach your children the same. It really is that simple.
Follow Kathleen O’Grady on Twitter: www.twitter.com/kathleenogrady