I struggled all weekend with what to post today, which as anyone who has found their way to this little corner of the Internet no doubt knows is World Autism Awareness Day. I have read so many profound posts from my fellow autism bloggers, and I wondered what I could possibly add to the conversation.
Instead I found myself thinking back six years to the first time I ever wrote about autism, and my family’s connection to it. Ironically, it was a piece about hockey, even though Ryan had yet to express any interest in the sport that would become his obsession.
The piece was about three NHL players, Olie Kolzig, Scott Mellanby and Byron Dafoe (all since retired), who had children on the spectrum and their efforts to raise awareness. The players recounted their individual stories about how autism had entered their lives, bringing with it a world of confusion and fear. They had found each other through word-of-mouth, and leaned on each other for information and resources as they struggled with the question of what to do.
When I interviewed the players, one of them gave me a quote which came back to me when I finally sat at the keyboard to write something this morning. Even though I can’t remember which of the players said it, the quote is seared on my brain.
If you don’t know someone dealing with autism, you will soon.
Six years later, and that quote rings truer than ever. When I talk to people about Ryan and our family, I am no longer met with confused stares. It seems everyone has a nephew, a cousin, a neighbor that has been touched by autism.
I suppose this means that awareness is working, and yet it leaves me profoundly sad. I know what an emotional struggle autism has been for our family, and Ryan is mildly affected. Since the day Ryan was first diagnosed, with PDD-NOS just past the age of two, autism has been a constant in our lives, almost like another family member.
I wonder if there will ever be a day when I go a whole 24 hours without thinking about autism. I don’t think I’ve had one in the near decade since that diagnosis.
Awareness is critical so that kids like Ryan — and especially those more profoundly affected — can find their place in the world with the support systems they need. A few years ago I wore the puzzle piece pin around the office on the first World Autism Awareness Day. I received a lot of questions as to what it meant. I will wear that pin again today and in doubt I’ll face many questions.
That is progress, and yet, I wish it weren’t the case.
There is one more quote from that article that has stuck with me. Recalling reaching out to Mellanby for advice upon receiving the diagnosis, Dafoe remembered being told “you’re in for a rough ride,” that there was no magic pill, no magic cure.
That quote, too, still rings true, but six years later and I think we have a much better toolkit to offer families of the newly diagnosed.
That too is awareness at work.
I certainly don’t celebrate this day, but I hope the awareness it helps build can make life a little smoother for all our children.