It is true that people who have children with special needs often become experts on the topic. I know more than the average psychologist, it seems, on the topic. The average person doesn’t need to be an expert on autism, but they do need to know some things. To determine what those things are, I looked back at what I knew about autism before I actually had to. What did I really know before my kids were identified, and what would have been really helpful to have know before I had to crash course on this neurological difference and amazing lifestyle.
In high school at church youth group is the first time I remember hearing the term “Asberger’s.” There was a guy in his early 20’s who liked to hang out with the teenagers, and it was whispered about him behind his back by adults. I had no idea what it meant, but the distinct impression I got from those adults was that something was wrong with that guy. The girls complained to each other about his awkward social attempts and how he was “creepy.” In hindsight, there weren’t any other people his own age for him to spend time with in our small church, so it makes sense he’d try with whoever was closest in age to him. This could very well be Builder Boy someday feeling shy and socially inept as a new adult, and I have no idea how to explain to teenagers why a young guy who just wants to make friends and who isn’t very good at it isn’t “creepy.”
When I was a young mother, a mom friend of a mom friend joined us for trick-or-treating with her husband and their SPD/autistic daughter. I can’t remember if the parents actually said the word “autistic”, though I do know now that she is. The young girl was freaked out and scared by the Halloween decorations and shadows and lights and the whole thing. My kids didn’t have a problem with any of it (we didn’t know they were on the spectrum at the time), and when the parents did try to explain, I’m ashamed to admit I judged them as them making excuses for an obviously spoiled child. Autism doesn’t always look like you might expect it to. I didn’t even know what to expect, and no one explained. Or if they did try, I wasn’t listening. Last year I facebook messaged the mother and apologized for my silent judgements.
I think my first really inkling of understanding came from a facebook group of homeschool moms. Two moms in particular I remember. One struggled with her Aspie husband’s lack of emotional engagement, and getting her two spectrum boys to eat. I was perplexed why the advice I suggested (to get them engaged in the cooking process) didn’t work. Another mom had a SPD/autistic son with a lot of sensory struggles and also was selectively/occasionally mute. I think it must have been from that second mother that I learned about the colorful puzzle pieces stood for autism, and that PTSD cause by ABA is bad and should be banned. She didn’t talk a lot about what exactly autism was, just shared her/her son’s struggles and I learned a little bit through that. If she shared things to spread awareness on facebook, I can’t remember if I ever shared them, too. Probably I didn’t, though maybe I had once or twice. I did learn from that mom that autism wasn’t a disease, a vaccine injury, or something to be afraid of. It made her kid extra quirky, but they had a good life together. That exposure helped me be not afraid when it was suggested to me by an IRL friend that Lady Bug could be on the spectrum. Because for all my “autism awareness”: that it was a thing, not a horrible thing, and not other things, I still didn’t know enough to recognize it in my own children. Yes, part of that was they are quirky like me. But I really didn’t know.
So my ruminations lead me to believe that I need to be more generous in my thoughts toward those who don’t share any of my posts on facebook. And I need to share those things that are near and dear to them more often, too. And I still am not completely sure what exactly I want the whole world to be aware about autism. But I do know that knowing it exists is not enough.
Disclaimer: the puzzle piece logo is no longer in favor with the majority of the neurodiversity community. Too many negative associations with Autism $peaks, and the idea that autistics are “missing” a piece or are just too puzzling for the rest of society to accept. The use of the logo in the picture was to represent what I thought/knew over two years ago.