If I’m very very lucky – and let’s be very clear, I do not expect to be this lucky – maybe someday I’ll read something from Dar that might go a little something like this.
I am an 18-year-old who suffers from autism. I have never spoken. I would like to, but I also suffer from severe apraxia and severe dysarthria, which means that making my mouth make words is, for me, as difficult as you would find putting your foot behind your head. And I believe my autism adds to that; word-making just seems hopelessly uncomfortable to me, and perhaps a little scary.
I know how lucky I am for all the medical advances in the last ten years. Otherwise I wouldn’t be able to write this column for you. I was inspired to write it because I have seen similar columns from other nonverbal autistic people like me. These writers are very impressive. And they make me think: if they can do it, I can do it, right?
I am also impressed with websites that publish people like me – it’s nice of them to offer their readers a perspective like mine. I recently learned that some of them have been doing it for many years. For example, what I might consider my “hometown paper,” the Daily Californian, has been publishing columns by nonverbal autistic people for at least ten years. That’s pretty great. I love this column where he says “the brain is not able to form a proper map or body schematic. I can at times feel like parts of my body are missing and that I am not grounded.” YES!
What was I thinking about when that column was written, ten years ago, back when I was eight? It’s hard to say.
I remember back when our house in Berkeley seemed so much bigger to me. At the time, I couldn’t wait to get taller so that I could reach all the foods that were being kept out of my reach. I used to move chairs so that I could reach the top of the fridge or the high shelves in the kitchen. This was before my parents locked away the good snack food.
I remember being jealous of my baby brother. Part of it is all the attention he got from my parents, although, when my parents paid attention to me, I’d often push them away. My brother never pushes anyone away, he loves attention. Maybe that’s what I was jealous of? It’s more like just his way in the world, that it all comes so easily to him. It doesn’t come easily to me.
I remember playing outside, especially rolling around on the grass. I remember the soothing feeling of watching granules of dirt, or droplets of water, spill through my hand. I still enjoy those things. I’m not entirely certain why I find these things so soothing, but I know I’m not alone. Even non-autistic people like these things. In Japan it’s normal to have some kind of running-water feature in your home. Maybe these things remind me that the positive flow of nature isn’t to be feared, and that I can live side by side with it? Not sure.
One thing I remember about being eight is that every time I asked Mom or Dad for something I would say “uh-tuh!” I now realize, more than I did then, that when you act like every problem is a nail, people are going to respond with hammers. Good thing I got so much better with my talker. Of course, back then, I wouldn’t wear it. I wouldn’t wear anything if I could help it. Certainly not hats or helmets or band-aids or bracelets or shoes or socks. Clothes only upon demanding demand. Good thing for these new autistic-friendly accessories, where I can see the sand shuffling around in them.
I remember a lot of screaming. I mean, what can I say? I get frustrated. It’s partly not being able to communicate, but that’s not all of it. It’s also that the world seems strange to me. Doesn’t it seem strange to everyone? It’s this swirl of movement and shapes and heated emotions. I don’t always want to be part of it. And closing my eyes isn’t really a solution, because that brings forth another weird world. So yes, I screamed a lot. And I still do. Did it, or does it, make me feel better, like I’m letting off steam? Uh…maybe. If you want to live with me, you have to live with a lot of maybe.
I know that my dad wishes I was grateful to him. I mean, it’s not like I’m not grateful. But on the other hand, I didn’t ask to be born. So it evens out. At least I hope it does. I feel more grateful to all the support staff who took extra time with me even when they really didn’t have to. That makes me want to help people in turn.
Let’s see how that goes.