Today is World Autism Day, and for us Autistic people, it’s Autism Acceptance Day. That means that many of us are using hashtags like #redinstead (which used to be #walkinred – I used both) and #toneitdowntaupe.
[image description: a photograph feature a person wearing a pair of red Converse-like shoes and a pair of blue jeans. A tan patterned rug is shown underneath the person’s feet]
It’s been about four years since I first started blogging about autism, and I’ve noticed some interesting things.
Facebook has this app where it will show you what you were doing or posting on the same day a year, two years, etc. ago. It’s sometimes fun to go back and see what you were doing on those days. It’s sometimes heartbreaking when you see photos of people who aren’t in your life anymore. It’s sometimes interesting to see how far you’ve come.
The past four years, my timeline has been filled with posts from Tone it Down Taupe and Walk in Red. I have some fantastic activist friends who have shared a bunch of things with me, and whose posts I have shared on my page.
But I didn’t always know what I know now. I’ve had Facebook for much longer than four years. So looking back on some of those days is distressing. One year, I lit it up blue. I don’t think I knew back then that it was to do with Autism Speaks. I definitely knew by that time that Autism Speaks was no good, but I didn’t realize that Light it Up Blue was basically supporting Autism Speaks.
I’ve learned a lot since then, thanks to a lot of reading (I was always good at that) and some patient people who got me to see that “uh, no, this is not quite as good as you think it is, and here’s why”.
It’s part of why I’ve begun in the past year or so to at least attempt to gently, kindly educate when I can, when it is possible and it’s clear the person is at least trying . I’m not perfect. I sometimes lash out when people use really awful language to discuss things that are pretty much absolutes (like, YES! All autistic people deserve dignity and to not have their care needs blasted all over the internet by their parents and caretakers). I have certain triggers, and I’m sorry, but I have a hard time taking you seriously if you refuse to read the information I provided (or at least start a Google search on the topic and read a tiny bit before demanding that I educate you). But I am trying, a lot more than I was in the past.
I remember what it was like to be ignorant. When my daughter was diagnosed definitively at age 3, the first resource that the doctors pointed me to was Autism Speaks. I wrinkled my nose at some of what I read, and I decided that Google was a better idea, because I was not liking some of the language that I encountered. Comments about grief upon obtaining a diagnosis were so jarring to me because I knew something was different from the time my daughter was 14 months old. A diagnosis was confirmation of what I already knew to be true, not a surprise or a shock or something that was causing me grief What a foreign concept.
Luckily, I never got too far into Autism Speaks. I didn’t jump on the cure train, that’s for sure. I wanted my kids to have the best life possible, and I knew that began not with therapies to change who they were, but with educational tools to help them learn in the way that was most comfortable for them. Eventually, all of this acceptance and understanding and learning about my kids and how their brain worked made me realize that oh, I wasn’t so normal after all, and oh, they’re taking after me . That journey of self discovery is something I’ll talk about another time, but it began when I was 27 and ended definitively with my own diagnosis when I was 30, which was nearly five years ago. Once I realized that I was a lot more like my kids than I was like the neurotypical people I knew, autism stopped being this bogeyman and I realized that no, not all parents know their kids and their triggers as instinctively as I did.
For instance, I hated Walmart for all of its sensory obnoxiousness, and my kids did too. I figured this out fairly quickly and we did some online ordering, some shopping in other stores. I knew that the lights and the noise and smells bothered them, because they bothered me. I could see them react in the same way I was. I had just had 25+ years of being told that I was overreacting and finding ways of mitigating the pain of sensory overload, so I got us all out of there fairly quickly.
It still took a couple of years after figuring out that I might be Autistic for me to say that out loud, for me to identify that outside of my personal blog (not this one), and it still wasn’t until this year that I was fully confident of being “out” about being Autistic with everyone I encounter on a daily basis.
So having said that, I’m trying to be kind to those I meet. I’m trying to help form this bridge of knowledge between those whose kids have just been diagnosed and activists (both autistic and not) who have been in the trenches for decades.
April is a hard month for a lot of us. We can’t go outside without encountering something related to Autism Speaks and lighting it up blue. So please, be kind, think about what you’re posting and whether an Autistic person would be helped or hurt by it, and please at least start looking up information on a topic before you demand that an Autistic person educate you about it.
Please feel free to connect with me on my facebook page here. You can also message me there.