I was in my 20’s the first time I heard the word autism. I thought-hm, that sounds awful. And I didn’t really think about it again. It wasn’t until much later, when I learned about autism symptoms that I thought-that sounds like college, when I hid under my bed all the time and had to drop a class because I couldn’t find it. When I lost it every time someone burned popcorn and the alarm went off at 2 am and I couldn’t get back to sleep. Group projects were hell because I couldn’t figure out what my classmates wanted from me. All of these situations happened to me. I failed out of college. I knew my experiences weren’t typical, but without the words to describe what was happening to me, I didn’t know how to ask for help. I didn’t even know that I needed help. I didn’t get diagnosed with Autism Spectrum Disorder until I was 28. Lots of factors went into me being diagnosed so late in life. I am very book smart, which meant a lot of my social deficits were given a pass, especially since I have a strange knack for making people want to be friends with me. I also dropped out of school at the ripe old age of six, and was homeschooled until I went back to public school in the 6th grade. Homeschooling was great for my little autistic self, but not having teachers or guidance counselors around meant that no one realized that my quirks might be a part of something more. I knew I was weird. I knew I was different. So how did it take another twenty years for anything to be done?
The human race is obsessed with language. More precisely, they’re obsessed with communication. We teach gorillas and babies sign language so they can talk to us more easily. We’ve coded bots to learn language and communicate in ways that seems eerily close to Artificial Intelligence. So here’s the question. What happens when you give people language? And even more, what happens when you give people the language to talk about what’s happening to them? For me, the first step was not one of relief, or understanding, but one of confusion. How had I never encountered this before? How had not a single person in my life looked at me and saw these words? And lastly, and most importantly, how did these new words describe me so well?
From the professionals: sensory, sympathy/empathy, high functioning, theory of mind, ABA. From the brand new community I found online: stim, neurodiversity, ableism, samefood, hyper-empathy, Red Instead, identity first language.
My whole life,, I would all of a sudden seem to lose my words, especially when I was stressed. My wife and I tried to find the humor in what would otherwise be anxiety producing, so we turned it into charades. There’s a word for that you know: it’s nonverbal.
Another word I quickly learned was proprioceptive. Although it took me a bit longer to learn how to spell it. Proprioceptive is a sense, like sight or smell, and it measures where your body is in space. And since I’m heavily proprioceptive seeking, it’s really just a big word for I like roller coasters. And swings, and rolling down hills and spinning around in circles. So you see, all of these things already existed in my life. Everyone in my life knew about them. Meesh has quirks, and rules, and routines. That’s just who she is as a person. And I’m not saying that isn’t true. I’m a member of the ‘you can’t separate me from my autism’ camp, so yes, I believe all of my behaviors are because of who I am as a person. But I also believe that that makes it even more important for me to have the language to describe and discuss who I am and what I experience.
Of course I don’t mean just me. I don’t even mean just autistic people. Everyone deserves access to language that allows them to communicate effectively. Just like access to medical and clean water, it is a human right. Put simply, if the vocabulary exists for a person’s experience, than they should have access to it. And if one doesn’t exist, I’m all for making it up. I’m learning American Sign Language, and while I have the vocabulary of a preschooler, I’ve already encountered some words that are important to my life that don’t have signs. So, I made a few up. And honestly, in marginalized communities, this is how it works. An individual or a small group comes up with words that fill a space, and usually nothing happens. But sometimes. SOMETIMES. Something magic happens and the words spread and grow like a beanstalk and sometimes they change. But. The magic can’t happen if no one’s planting the seeds. So let’s all remember: We all need language to describe our experiences. Sometimes the words don’t exist yet, but it’s ok; making things up is how we grow. Vocabulary gives us power, and because of that, it is a human right. And lastly, I hope you use your preferred method of communication to empower yourself, and your community.