Before my son’s diagnosis 5 years ago, I don’t think I knew about the blue puzzle piece symbol. I can’t say for certain, though, because it feels like a lifetime ago. What I do remember, however, is that it was an extremely isolating time and I felt so alienated from my friends and family who had no idea what I was going through. The first time I felt seen and PART OF something again was when my family and I attended our first AUTISM SPEAKS CANADA walk a few months after my son’s diagnosis. At the time, I had no idea that there was any controversy about the American counterpart of that organization. I fell upon it because it was the only organization that came up when I looked for anything local that had to do with Autism. Since that first day when I met the regional representative who organized the walk, I felt welcomed into a community where I felt like we belonged. Where my family was understood and embraced – flapping, screaming, fleeing, and squealing included. Because we were amongst people who GOT IT for the first time. And so many of those people, like us, were wearing variations of a blue puzzle piece t-shirt with a little personal touch. It was heart warming and emotional to see families come together wearing their matching shirts and caps, and to have my support system by my side doing the same. I have found my tribe, I thought to myself. That’s what the blue puzzle piece emulates for me.
I later learned that initially, the puzzle piece had been chosen as a logo because researchers had sent out to find out the missing puzzle piece regarding the causes of Autism. I too, was on a quest to understand it more. In fact, I had an unhealthy obsession at the time and would lose sleep reading anything and everything I could get my hands on to answer all the questions and theories that my anxious brain was flooding me with. Again, I related to the symbolism of a piece of the puzzle being missing, because it was consistent with what was happening within me too. Over the years, my mindset shifted, and I learned to focus more on the present, and the future. That, too, is part of this puzzle – the unknown… not knowing what the outcome will be until all the pieces come together.
Never once did I think that anything was missing within my son.
Let me say that again. I support the blue puzzle piece and I don’t think my son is missing anything. In fact, I don’t think he’s anything short of perfect. He can be a huge cacahead sometimes, but that’s because it runs in the family – not because I believe there is a piece missing in him. When I found out that so many people are so fiercely against the puzzle piece because they think that’s what it stands for, I was appalled. I was appalled that anyone would think that because I support the symbolism of a puzzle piece, that I think my son is simple and missing something, and then proceed to hate on me because of their misconception of my beliefs.
I was not appalled because anyone has a different opinion that I do. That would make me no better than the haters. I was appalled because of the divide in a community that faces enough adversity already. Appalled that there could be so much hatred for people like me who identify with a symbol that has brought them some solace. I am not appalled by those who prefer the infinity symbol, or the colorful ribbon, or no symbol at all. I respect any differing opinions and expect the same in return. I stand with all neurodiverse individuals and their parents and caregivers, in the knowledge that although our paths my have some similarities, there are likely even more differences, including our beliefs, but that should never divide us.
To me, a puzzle piece is part of a big picture. It takes many individual pieces, unique, in a spectrum of colors, to come together and create something beautiful. Just like individuals coming together to form a family, each with their quirks and sometimes rough edges. Or a community – like the community I became a part of when we began supporting Autism Speaks Canada. The support I got from the people I met through them has been a saving grace during many difficult times over the years. My son and my family have directly benefited from them or contacts we made at the walk. Specialized tennis lessons, informative conferences, free tablet, and the list goes on. Not a single negative experience. I have never understood the hatred associated with the American Autism Speaks organization but the mission, narrative, and values of the Canadian counterpart I support proudly.
And then there’s the issue of the blue, right? Since I’ve started raising awareness, I’ve been all about LIGHTING IT UP BLUE on April 2nd, and when I’m teaching I wear blue throughout the entire month of April and I teach my students why. Why? Because it is the color that is widely associated with Autism. Just like pink is associated with breast cancer and red is associated with AIDS, and purple is associated with epilepsy and the rainbow is associated with LGBT. I wonder if there is as much controversy within those communities as there is in the Autism one about the color blue. My initial research explained that the color had been chosen to represent the prevalence of boys on the spectrum, due in part to the under-diagnosis of young girls, and most likely genetic factors, but also because it is a soothing, calming color. Makes sense to me. So I supported it. And when I read all the counter-arguments, I decided to continue supporting it, because I think it’s beautiful that there is a simple way for family, friends, neighbors, businesses, international monuments, to join a movement and show support. Is it perfect? No. Does it mean that there are no longer bureaucratic injustices and social inequalities for autistic individuals and their families? No. Is it better than ignoring the issue and the cause? I think so!
And so, when I associate with the little blue puzzle piece, I am not suggesting that my son and other individuals on the spectrum are simple or infantile. I don’t think there is anything missing about them or their DNA. I don’t ignore the misunderstood and misdiagnosed females on the spectrum. But I do relish in the support I see on my social media feed when I see pictures of my friends and their kids wearing blue. I do like having an internationally recognized symbol that unites me with other people who live a reality similar to mine. People who advocate and struggle so that their kids have a fighting chance at being treated equally and having fair opportunities to live a fulfilled life throughout their lifespan. For me, that is part of the puzzle, too.
Do I think awareness should be present every day, and not just on April 2nd? Yes. Do I think that being AWARE equals ACCEPTING and INCLUDING, no. But I do think it’s a first step. And I will not be shamed for it. I will continue to share the puzzle piece and light it up blue with pride, and it will continue to make me happy to see you do the same.