I can talk. I can type. When words come out of my mouth, they come from my brain, and thoughts that I assembled in my brain.
According to some people, that makes me “high-functioning.”
Here you go. Here’s a piece for the doubters. For the people who think my life is a breeze and my autism is “practically a personality trait.”
I will now list, in painstaking detail, every single thing I am currently incapable of doing, and all the ways I struggle and experience pain because I live in a world where the average person can do a ton of things I can’t do without hurting myself.
My list of my many difficulties
- Life is really hard sometimes, and that’s no fun.
I fooled you. I did a bamboozle. I put the wool on your eyes. I practiced my deception. I did the deceit. I made you think that something was going to happen, and then I didn’t do that at all. I bet you are really surprised.
Why did I do that?
I typed the list. It was almost 2 pages. I laid bare the things that made me cry. I talked about the things that made Mom give me those disappointed looks and then say “it’s fine” because she concluded I couldn’t do any better. I outlined some of the reasons why I prefer not to remember a considerable portion of my life.
But I didn’t put it here.
After I typed the list, I felt really sad. I already know I am disabled. It impacts me every day. Everything I wrote was true. But seeing it all kind of made me want to cry. It’s… it’s not exactly the happiest list. If you read it, you might call me “low-functioning,” because a lot of the things I can’t do are things that many autistics who are 10 years younger than me can do.
I looked at this list, and I thought “what if one of my future employers found this?” I use a screen name, but that’s not a guarantee. If they saw it, they might say I belonged in an institution. (It is a long list.) They would never hire me. I would have no job from them, not ever.
I looked at this list, and I thought “what if Grandma or one of my aunts saw this?” They might cry. Or pray for God to get rid of my autism so that I could be happy.
I looked at this list, and I thought “what if Mom saw this?” She’d probably drag me to the psychiatrist’s office and demand stronger antidepressants NOW, THIS INSTANT, before I DIE of ETERNAL SADNESS.
I looked at this list, and I thought “what if Dad saw this?” Sometimes it’s hard for me to tell. I think he would not say anything, at first, and sadness would fill his heart. And he might say “you are more than this.”
And then I thought “what if my sister Katie saw this?” I think she would be confused, and she probably wouldn’t read or understand every word in the list. And she might say “That’s not you. You are smart, and nice, and funny. I like to be with you.”
It’s not me.
My hypothetical imagining of Katie is correct. It’s not me. Every statement in the list I made was objectively true, and does apply to me. But the list isn’t me. Does that make sense to you?
Yes, you could look at the list and you could say “that’s awful” and you could cry dramatically on the floor.
But I have another memory about crying. It’s about me being 10 or 11, getting back the essay I wrote at school, with a note that I made the teacher cry. The essay was about how much I love summer. She thought it was beautiful.
There are so many ways in which I struggle to function. The good news is that my autism specialist says I’m making great strides. I think/hope that the last of my co-occurring conditions got diagnosed last Friday, and I believe that treatment and lifestyle adjustments will make a big difference. Assertiveness skills are an area I’ve been focusing on lately. It’s kinda scary, but I think I’m learning!
I am a young woman who can’t do a lot of things. I’m also a young woman who can do a lot of things. I can draw and write. I can put tears in people’s eyes because they think the things I write are beautiful. I can play piano, though not very well. I can make my sister laugh. I can talk your ear off about Star Trek for as long as you would like.
These things are autism, too, just as much as the things on my 2-page sad list are. I could write a long happy list about autism too. How I like to bounce up and down on my exercise ball, and line up flowers, and clean up public spaces to make them look nicer for everyone.
My life is hard sometimes, but it can also be really nice.
I’m glad I have my life. I intend to keep using it. Maybe I could make some really good things happen.
Why won’t that satisfy some people?
Why do people want me to say otherwise? Why do they want the grisly details of all the worst parts of my life?
I think about the people who say autism must always be a tragedy. They look at autistic people who say our lives are worth living, and they say we don’t have Real Autism.
If I did put out that list about me, I think that maybe they would diagnose me with Real Autism. Then, they would point to me and say “see, we are right. Her life is a tragedy. She just isn’t self-aware enough to realize it. She needs a cure for her own good.”
Either way, they still wouldn’t be listening to me.
And in putting that list of my darkest and hardest moments into the world, I would only be hurting myself. Why should I exploit myself for the benefit of people who don’t even care about me as a human being?
I don’t have to lay bare my aching soul for non-autistic consumption. I don’t need to reopen every cut for your examination. I don’t have to prove that I’ve suffered in ways that some people can’t comprehend.
You don’t need a badge of True Pain in order to have an opinion about autism that matters. My failure to disclose my horrible experiences don’t mean that every word out of my mouth is a lie. My voice matters, whether I lay out my painful personal history in detail or not.
So I’ll just tell you that I’m autistic, and that I struggle sometimes. You’ll have to take my word for it. Because I refuse to let the voyeurs of suffering take power over me.
I am me. You’ve already decided whether you’re going to believe me. I won’t engage in any digital acts of self-harm for the sake of those who would treat me like dirt either way.
If you don’t believe me, I suggest you go somewhere else. Like to Fox News. Or anti-vaxxer land. Or the moon.
If you do believe me, cool! Maybe we can learn from each other. If there’s one thing you might have discovered about me through this, it’s that I’m always trying to learn more. I probably know some things that you don’t know, and you probably know some things that I don’t know. Let’s share.
Would you like to share some fun facts about autism and you? Life can be hard sometimes, but it can also be a lot of fun! Let’s talk about the fun.
Or, if you’re in the mood, teach me something cool. (If it turns out I already know it, I’ll still appreciate the thought.)