The Best Way I Can Describe What It's Like to Have Autism

I haven’t written a post for Autism Awareness Month before. Part of it is because when I was getting my website going, I thought I would only ever write on one subject… basketball. The other part is that, honestly, I still haven’t figured out my stance on the entire thing. How can I write on a topic when I’m not sure how I feel about it?

There are so many different ways I could address Autism Awareness Month. I could talk about how I don’t agree with some groups’ stances. I could talk about what color I think you should wear. I could talk about whether to call me “a person with autism” or “an autistic person.” I could talk about functioning labels or how far the spectrum is supposed to go. But here’s the thing: I’m not sure about most of this.

So instead, I’ll tell you how autism affects me. That’s all I can do. I can’t tell you how autism affects someone else. We are all affected by autism in different ways, whether we are on the spectrum ourselves or not. I don’t know how autism makes you feel. But I can tell you how it makes me feel… or I can try. We’ll see.

My first “official” experience with autism came when I decided to begin spending time in a self-contained classroom at a local elementary school as a junior in high school. I was very comfortable in that classroom, loved the kids and the teachers (still do!), and looked forward to every day that I got to spend with them (still do!). I still love visiting that classroom and spending time with students past and present.

As it would turn out, I had been experiencing autism my entire life. When I was diagnosed with autism, I initially felt very conflicted. Soon thereafter, I felt thankful. Today, I feel happy… mostly.

There are lots of things that make an individual unique. One thing that makes me unique is my job and how I got here. Another thing that makes me unique is that my grandfather was the mayor of my hometown growing up. Autism is just another one of those things that makes me unique.

Autism makes my life loud. That’s the best adjective I have found. Everything is amplified. I don’t mean this only in terms of my sense of hearing, although that is one part of it. I feel loudly. A light touch feels not so light. A bright light feels brighter. A soft buzzing from a light feels thunderous. Instead of happy, I feel overwhelmed. Instead of sad, I feel overwhelmed. The general perception is that autistic people don’t feel empathy. I, along with most individuals on the spectrum, find the reverse is true. You can read more about the Intense World Theory here.

Autism makes my life stressful. When everything is louder, situations tend to be a little more stressful. I’m super easy to sneak up on. I live my life constantly on edge. And sometimes, I fall off the edge and a meltdown occurs. And that’s OK. Well, maybe it isn’t OK. But it has to be. I don’t have a choice. It has to be OK and I have to keep going. I work hard to notice when I see myself trending toward a meltdown, so I can change course. It has taken a lot of work for me to get to this point of self-awareness, but it still doesn’t work all the time.

Autism makes my life organized. Actually, that’s probably the OCD, which is a common comorbidity associated with autism. I do the same thing the same way every time. I count lots of things, notice things that most think are unimportant, and stress over tiny imperfections. I get thoughts stuck in my head, over and over and over again. Phrases, images, memories, patterns. These can all become overwhelming. I use them to my advantage as much as I can. I think this is part of why I am good at my job. And I am very good at my job. I notice the little things, the nuances that others tend to overlook. I find the pattern and I find it quickly.

It’s funny, though, that as much as I notice the little things, I tend to miss the big picture. I’m much more likely to notice that your tag is sticking out of your shirt (which would never happen to me because I hate tags) than notice that you are sad.

There is no doubt that autism makes my life difficult, but it also makes my life beautiful. When everything is more intense, then the everyday, the mundane, the typical, the normal… those things become outstanding. I can’t speak for you or anyone else, on the spectrum or not. Our experiences are all unique. Regardless, I do believe that it is important to find the beautiful. Recognize that there is bad, there is ugly, there is disrespect, there is ignorance and there are meltdowns. Those things are inevitable. But there is also good.

Find your support system and acknowledge them. Find the good and celebrate it. Find the beautiful and treasure it.

Follow this journey on Erinmmckinney.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.