A Better Autism Awareness Day
We had fun last year on Autism Awareness Day. Once I ceremoniously crumpled my email from Autism Speaks (after printing it, duh!) and tossing it in the waste bin I took Charlie to his favorite park with a stick and a couple of garbage bags and we picked up litter throughout the morning.
I want Charlie to know that he’s a part of something — a community — and that all of us not only have a place in it but a responsibility to use our skills to help make it better. Charlie has challenges in school as do many kids. But he had no challenge in identifying and picking up two entire bags of litter that day. So why sit around waiting to be defined by Autism Speaks?
My initial plan had been to spend the following afternoon teaching him about autistic accomplishments. I never identify Charlie as autistic to him, nor do I label these “heroes” as autistic, disabled, or challenged. They are simply individuals who represent a greater diversity of people and they have accomplished great things. But there is only so much you can talk about Albert Einstein or Temple Grandin. Despite my best efforts my attempts to research a broader group of individuals there was very little I could find.
One of the biggest challenges on Autism Awareness Day is that unlike many other days or months dedicated to groups of people, autism doesn’t have a culture to celebrate. Autistic history is hidden & autistic culture is largely undefined. Autistic contributions to science and the arts, be it the work of Benjamin Banneker or Lewis Carroll, exists in a pre-autistic purgatory where few historians dare to provide a posthumous diagnosis. This means that stories of autistic individuals who fought for civil rights (they exist), or who fought in wars (they also exist) have been largely purged from any sort of meaningful documentation.
What is documented in autistic history are stories of murder and abuse on a horrifyingly massive scale. From warehousing to the Nazis, the story of autism as an oral history isn’t one you would celebrate to a five-year-old.
Even today, successful autistic artists, athletes, and scientists are treated as objects of curiosity, black sheep amid a flock of neurotypical peers, whose stories are commodified as inspiration for the flock rather than served as milestones for the other black sheep. This ensures that in Schein’s “3 Levels of Culture” autistic accomplishment is always treated as superficial “artifact” rather than being absorbed into the “core” where the deeper dimensions of cultural reality grow and take shape.
My dream for a better Autism Awareness Day is that in some manner, be it a method or within a medium, the gathering of autistic history and accomplishments helps create a culture for the autistic community that can be shared and celebrated with my son. And that some day autistic culture as defined by the autistic community is a part of the greater tapestry of American diversity. That is how you replace an Autism Speaks with an “autism fights back”.
For now, we’ll continue to look for opportunities to serve the community.
