I have to tell you something. I am bracing for Autism Awareness Month. It’s coming. I need your help.
I’m already cringing at the videos — about an autistic student who is included for one very special day, or given an honorary award, or gets sat with at lunch one day by a famous athlete. This is called inspiration porn by many autistic adults. Its message: “Look at how noble and generous it is that the normal kids treat him like he’s almost a real person they could be friends with.” That is what my heart hears as it folds in on itself and sinks into my gut.
I’m hunkering down for the breathless videos and articles about the latest cause or miracle cure. “You’re unacceptable and broken, and we are desperate to fix you,” is what I’m afraid my autistic child hears, along with the many autistic kids I teach and support. http://www.itv.com/…/experts-warn-against-miracle-cure-for…/
I’m already gritting my teeth awaiting the latest Autism Speaks fundraising pitch. They have a flair for portraying autistic people as soulless, animalistic, miserable burdens on their poor families. “If you would click here and donate generously, we could eliminate this horrible scourge once and for all,” they seem to suggest, rather ominously.
Years ago, I didn’t know how to ask for support. But I’m asking for it now. Not for money for research, or support for a fundraising walk, or even subscribing to my point of view. I’m asking you for a little time and attention over the next month. Anything you can give.
You would honor me, and our friendship, if you could keep an eye out for articles and videos by actually autistic people. Give those some extra attention and compare their messages and points of view with the usual stream of autism tropes that flood our social media this time of year.
Because that barrage of autism content we are about to receive? It is often generated by people who, like you, haven’t had much opportunity to learn about autism from autistic people. So much of it is demeaning. So much of it is wildly inaccurate. So much of it reinforces, recreates, and even feeds the stigma that does so much more harm to the autistic people I care about than the direct impact of their autism usually does. In contrast, there are so many vibrant, funny, insightful autistic writers and YouTubers who generate a lot of great stuff that gets passed over in favor of clickbait.
Which is why most of April’s autism extravaganza just sucks the life out of me. But if you’ve shared something along these lines in the past, don’t sweat it. I’m not interested in losing any friends here. In fact, when I look back, I realize how many people have been thoughtful and patient with me when they must have wished I’d understood their point of view a bit better. I regularly have to forgive myself for not knowing what I couldn’t have known until I learned it.
I myself didn’t have much occasion to learn about autism from a neurodiversity perspective until well after the day my husband and I hustled out of the Westside Regional Center, having been smacked upside the head with, “Your child has autism and will qualify for services. If you want to talk to someone about your feelings or anything, the family service center center is down the hall.”
We walked in a daze to the elevator, where a group of young adults with Down Syndrome joined us, discussing their lunch plans on the way down. “Oh,” I thought. “Oh. I guess these are our people now. Huh.” The uncomfortable truth is, I had not thought of people with developmental disabilities quite that way before. I was as much a product of a segregated school system and social life as many other people up until then.
But now they are my people, and I am theirs, and we belong to each other. Life on our invisible island is pretty good. But the mainland sometimes seems far away, and a lot of the people there seem remote, even though most of us islanders commute there daily. So consider these posts to be a message in a bottle. I’m hoping someone will find it and read it. So we can all belong to each other a little bit more.
[This is a copy of my Facebook post from March 31, 2016. A few people asked me to publish it on my blog to make it easy to share … in some way I don’t completely understand yet, but okay. Feel free to visit me on Facebook at Kelly Priest & Associates to see the series of articles I’m sharing through April 2016 from some of my favorite autistic writers and thinkers.]