I am not a person with Autism. But, I know and love a lot of people who are. There are many many blogs and social media accounts run by people who are actually Autistic (follow #actuallyautistic on Instagram), and my goal with this post is to simply relay the information that I have learned from them and bring it closer to the people in my life. These are not my thoughts or ideas. They are the thoughts of an entire community, who I am doing my best to support. I encourage you to learn as much as you can from people who are actually a part of the Autistic community. I am just a messenger trying to spread their words.
Traditionally, April has been Autism Awareness month, with April 2nd being World Autism Day. The organization, Autism Speaks, created the Light it Up Blue movement during the month of April. My family and I were big supporters of the movement. We wore blue on the day of and posted about it weeks in advance to make sure that all of our friends and family did too, all in the name of our girl! We changed our porch lights to blue light bulbs and posted links on FaceBook of where people could buy their own blue light bulbs to join us in this act of awareness. I’ll still be celebrating this year, but it will look a little different for me. I’ll be wearing red instead of blue in response to the Wear Red Instead Movement.
I learned about the Wear Red Instead movement by following the hashtag #actuallyautistic on Instagram. The movement was created by people with Autism. As stated earlier, the Light it up Blue campaign was created by Autism Speaks, one of the most funded Autism organizations in the world. Autism Speaks is primarily known for its research. Up until the last decade, their mission has been to find a “cure” for Autism and to develop a prenatal test. According to Autism Speaks 2020 Financial Report, a mere 1.7% of their funding (almost $50 million worth of funding) went directly towards family services for people with autism. Knowing and loving as many people with Autism as I do, this is something that I no longer wish to support. Most people believe that a well-known and well-supported group like Autism Speaks could only be good, and they give their money and their support without doing their own research. I was one of these people for many years. But now I know better, and I’m trying to do better. My sister and my friends and my students with Autism are perfect the way that they are. I want to celebrate them…not raise awareness for finding a cure for the thing that makes them who they are. No, there is not a enough research about Autism, and yes, it is needed, but with this newfound knowledge, Autism Speaks and the Light it Up Blue movement no longer align with my beliefs. This is not the type of research I wish to support.
Now for the puzzle piece. While Autism Speaks did not invent the puzzle piece symbol for Autism, it is widely associated with the organization. The puzzle piece originated in 1963 by a parent of a child with Autism, who was also a board member for The National Autistic Society in London. The puzzle piece was accompanied by an image of a crying child (which they no longer use today…learn better, do better). In the 1960s, Autism was thought to be a “puzzling” condition, and the puzzle piece promotes the idea that people with Autism are somehow missing “pieces of the puzzle.” The #actuallyautistic community has chosen not to support the use of the puzzle piece to represent Autism anymore. They prefer to use symbols that represent neurodiversity or an infinity sign to represent the fact that we will never stop learning, and our knowledge of Autism will always be evolving. They have also chosen to move away from using the color blue to represent Autism as well. The association of the color blue began with Autism Speaks because it was thought to be a calming color for those on the spectrum. Others interpret the color blue to be a representation of the fact that Autism has been widely recognized as a disorder that affects predominantly boys. However, this has led to missed or delayed diagnoses for many Autistic women.
My question to Autism Speaks is why do we need a cure for neurodiversity? Isn’t that something to be valued? Not only valued, but celebrated? It’s 2021. Everyone knows about Autism, and everyone knows at least one person with Autism. Autism awareness has run its course. While it was greatly needed at one point in time, it’s now widely recognized around the world. It’s time to move away from focusing on Autism awareness and start sharing Autism acceptance instead. Maybe the “cure” for Autism is creating a society that fully accepts people who think differently. A society that celebrates having differences. A society that recognizes there is no such thing as a single right way. That disability is nothing more than a social construct…and most importantly, that Autism is something so unique and special, and it deserves to be celebrated and appreciated everyday! I can’t speak for my family or friends, but I will be supporting the #actuallyautistic community on April 2nd by wearing red.