Ten Things I Wish People Knew About Me (As a Person with Autism)

At the age of three, I was diagnosed with a condition known as Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). It sounds like a made-up disorder, but it’s actually a form of autism. “Atypical autism,” to be exact.

Though some of the stereotypically autistic behaviors associated with atypical autism tend to be milder compared to other forms, it didn’t make my family’s lives any easier. In fact, my parents sometimes talk about how alone and isolated they felt. They felt at times like I was the only child in the world that had these problems. These problems followed them for a good deal of their lives; like any parent, they had to play most situations by ear.

Of course, the situation today is slightly different. Nowadays, people have the Internet to console them. Parents of autistic children can now swap stories and tips on social media. Additionally, the experience of raising a child with autism is becoming far more common because the number of children diagnosed with autism increases every two years. Yet even in this environment, confusion reigns. The Internet is a big, scary place, and you aren’t guaranteed to find what you’re looking for online.

That’s the reason why I made this blog. Because I was once a child with autism, and now I’m an adult with autism. I can speak much more eloquently and clearly than I could even as a high-school student. And with this newfound ability, I want to share my experiences with the world so that kids with autism and their parents can come to understand the world better.

There are a lot of things I’d like to share with people, but if there were ten things about me I wished other people understood, they’d be the following:

1. When I walk around in circles, I’m not lost (at least not physically).

I walk around in circles primarily because it helps me think. It’s a form of pacing. Sometimes, I may make strange sounds and wave my hands around while doing it, but that’s because I’m trying to make sense of the thoughts inside my head. I do recognize that it’s a bit immature, and I try to keep it under control nowadays, but given how stir-crazy this quarantine’s making us all, can you really blame me?

2. Just because I talk to myself doesn’t mean I’m crazy.

Talking to myself is just my way thinking out loud, another method I use to help me think and make sense of my own thoughts. By saying my thoughts out loud, I can reflect on them more clearly. Oftentimes I role-play what future conversations would be like in order to prepare for them. It can be difficult for me to come up with the words to say on the spot. Anticipating what other might say beforehand is the best strategy.

3. Just because I can hear you doesn’t mean I can understand you.

Sometimes, my mother yells at me when she thinks I’m not listening. To be fair to her, I do have my headphones on sometimes, so I don’t answer her right away. But other times? She can be speaking in plain English and it’ll go through one ear and out the other. It’ll sound like just gibberish. Think of it as a sort of verbal dyslexia. At that point, I have to ask my mother what she just said.

4. Just because I seem indifferent doesn’t mean I don’t care.

I can be distracted pretty easily. The weird sounds, even ones that are quiet, can take away my attention. If there’s a television in the room that’s on, I can’t really concentrate on what I’m doing, though putting on some headphones to listen to a podcast or music track can help me concentrate on a task. Sometimes, that lack of concentration can come across as indifference, but I don’t mean to act in that way.

But external noise-makers aren’t the only thing that distract me. And that leads me to my next point.

5. I have a hard time telling one tone of voice from another.

At least when it comes to the spoken word, I find it difficult to tell the “tone” of what’s being said. Written language, I can tell a bit better what the tone of voice is like. This was much worse when I was younger. Back then, I would drone on and on about certain topics, and I couldn’t tell the other person didn’t want to talk about it unless they flat-out told me.

6. Certain subjects will just invade my brain and won’t stop repeating themselves over and over in there.

One moment, I’ll be talking about someone about how their day went and the next, a memory of a Spongebob Squarepants episode I watched over a decade ago comes back to my mind. I’ll start laughing like crazy all of a sudden, and nobody would be able to tell why. It can be a bit embarrassing at times.

Also, if you’ve ever heard me talk, I often try to connect disparate topics together to make a central point that only makes sense in hindsight. For example, we might be talking about your favorite television show when something you say reminds me of something I read in a book once. I then go on a long tangent, trying to relate what was in that book to whatever we were talking about.

7. I get lost in thought to escape from reality.

People with autism generally have problems with large crowds and loud noises. For as long as I can remember, I’ve considered such situations to be at least a pet peeve. It’s difficult for me to enjoy concerts even to this day, and large, cafeteria-like settings could potentially cause me trouble.

Fortunately, I came up with a way to deal with such problems: by escaping from reality. By concentrating on a handheld game or iPhone, I can escape from the noisy world surrounding me into one of my own imagination. This can come at the cost of my attentiveness.

8. When my voice gets loud, I’m not yelling.

The volume of my voice increases in proportion to my enthusiasm. The more excited I am to talk about a subject, the louder my voice is while talking. This can be mistaken for me yelling or even my getting angry. However, I don’t mean offense by taking this sort of stance.

This isn’t necessarily a product of my autism, but a shared trait of the men in my family that I suspect is genetic. Whenever my father talks about sales, he sounds like he’s shouting, and this intimidates his co-workers. His father, when he was alive, also displayed this trait.

9. I wished my parents had pushed me to excel.

My parents were really nice people. But sometimes, they seemed too nice. They didn’t push me to get a job in high school, and in fact, they didn’t push me to get one until after I’d graduated from college. This is something that, in hindsight, might have held me back. I don’t resent my parents over this or anything like that, since they were only looking out for my interests, but I wonder if I would be better equipped to deal with things now if I had gotten a job.

10. Nonetheless, as an adult, I appreciate their stern, steady hand.

One of the things that they did for me was place a hard limit on the time I could play with electronic devices. This is something I feel doesn’t take place nowadays. A lot of parents allow their kids to get sucked into a screen in order to shut them up, but not mine! Though it really, really annoyed me at the time, in hindsight, I was just a dumb kid and they were entirely correct about electronic devices.