Behind A Glass Wall

There have been lots of times when someone asked me, “what is autism?” Usually right after I told them I was autistic. I was never sure what to tell them, because there are so many different symptoms and different ways that people can experience them.

Today I thought about one thing I feel defines autism, at least for me. I wonder how many autistic people would relate? I feel like the main “symptom” is not having the ability to, as my mom once put it, “stay dialed in.”:

If you randomly look at me at any point in the day, there’s a good chance I’ll look like I’m spacing out. I may be sitting down rocking, I may be pacing back and forth, I may even be coloring, but you can tell that my mind is elsewhere.

I remember being a kid, about 6, and asking my mom what it was called when you were just staring out a window for a long time. She told me it was called daydreaming, a word I’d hear frequently throughout my childhood. Quit daydreaming and finish your dinner. Quit daydreaming and pay attention to the teacher. Quit daydreaming and follow directions.

What I experience while I appear to be daydreaming is basically being really deep in my thoughts, so deep that I stop being aware of where I am or what I’m supposed to be doing. I can’t enter or exit this state of being at will. I can be shaken out of it by a sound or physical feeling, which might be someone calling my name repeatedly or tapping me.

I’ve heard people call a similar feeling “the zone,” when they’re really focused on something. People will say things like, “When I clean the house, I just turn on my music and get into my zone!” Or when they’re working hard on a project or something, or even exercising.

Sometimes being in the zone can be helpful. Being completely focused helps you get the best results for whatever you’re doing. But what if you’re stuck in this zone most of the time? Not even working on something, but just lost in your thoughts, far from the world. You can see and hear the world around you, but it’s a little like trying to listen to an AM radio, it’s fuzzy and you can make out some words, but you have to carefully adjust the tuning dial to know what’s going on. I can focus in on the world for a little while at a time, but it’s difficult to stay on the same channel as the rest of the world.

That’s maybe why I’m so tired after only 3 hours of working with kids, while I can do artwork for hours without even noticing the time passing. When I do art, I can stay in my own world and relax. But when I’m at work, I don’t have the option of even taking mental breaks. I’m expected to stay focused in on the kids at all times. It’s a lot of work.

I described it to my bonus dad as feeling like I’m behind a thick glass window with a speaker hole for communicating. I can see everyone else and the rest of the world through the glass. Sometimes I’m very far away from the glass and I don’t even notice what is on the other side, because I’m focusing on something that’s on my side.

But other times I really, really want to be on the other side with you all. I run to the glass and press my face against it, I put my ear to the speaker and try to hear everything, I cup my hands around it and try to speak into it so you all can hear me. But I can never quite be with you.

Oh yeah, but also there’s some for weird force of gravity on my side of the glass, and sometimes it just pulls me back and forth, closer and further away from the glass, and when this happens I don’t have a lot of control over where I am. Maybe I want to be as close to you all as possible, but I’m so far away. Or I want to be alone and relax, but I’m smashed up against the glass and your world is blaring in my ears. (And while all this is going on, it still just looks like I’m sitting quietly and daydreaming!)

I’ve found that having something to do by myself, while,being around others, is a great thing for me. Especially in situations where people are just sitting around talking. If we play a board game, you will probably have to tell me, “it’s your turn” every single time it’s my turn, because I just can’t pay attention. Whenever my turn is finished, I immediately get sucked back away from the glass.

But if I can color, or even play with a fidget, I am free to get very close to the glass when I want to, while then going back further away into my world when I need to.

When I am in a group of people who are talking, especially with multiple conversations happening at once in the same space, what I hear is “djfheuucujhsjiifurhnnaumofieiushhahuefnfuueiisjf…” it’s very hard to stay focused in when this is what you hear. So when I’m in a group like this, I tend to get pretty far away from the glass that separates my world from yours. This doesn’t mean I don’t want to be with you. It just means I can’t process what’s going on quickly enough to really participate. Let me sit and color, take away toe pressure to stay focused and make eye contact, and I will relax and enjoy your presence. I’ll listen when I can, I may even comment or ask questions, and then I slide back away from the glass in a peaceful way.

I’ve also noticed that it’s harder for me to stay “dialed in” when there is anything uncomfortable on my body. For instance, a dry and slightly sore throat, or an itchy mosquito bite, or too-tight pants. When something like this is happening, it takes up a lot of my ability to focus. I won’t even be necessarily be thinking about anything interesting, in this case… I’ll just keep on experiencing the physical feeling. And yeah, it’s pretty much the same if I’m having a strong emotion. The emotion will block my view of the glass and stop me from focusing on anything else.

When you know of autistic people who aren’t able to communicate in the most common ways, such as speaking or writing, often their parents or caregivers will say things like, “I think something is going on with Tommy. He’s getting sick or something. He’s been more ‘out of it’ than usual the past few days.” And then the parent takes them to the dentist and it turns out they have a cavity, or a few days later they come down with a cold.

I wonder if this metaphor of being in the other side of a glass wall fits other autistic people too? When there are autistic people who don’t seem really responsive, or who are called “low functioning,” maybe they either struggle more with getting close to the glass. Some may not even be interested in what is going on on the other side. But I feel like most autistic people do wish they could survive in the other side of the glass.

I also want to point out that being further from or closer to the glass wall has nothing at all to do with intelligence. Intelligence is not part of the equation. The person who is furthest from the glass, not even looking at the glass at all, might be the most intelligent person in the room. They’re just too far from the glass to show you.

I know this metaphor comes dangerously close to the “my child has been stolen from me and is kept in a different world where we can never reach him” attitude that some people and organizations have. So let me clarify. The glass is there to protect us from your world, not to torture us by keeping us away.

The glass might be able to be removed.. But often people focus on coaxing us out from behind the glass, and trying to teach us to tolerate your world. Sometimes you give us tools like headphones to muffle the sounds. This helps, but we still can only visit your world. Forcing us to stay “tuned in” will not help us to be closer to you. We do need the glass, and we need to spend some time behind it each day, at different positions, further from and closer to the glass that separates us from you.

If you want us to spend more time in your world, the best thing to do is make it more hospitable for us. Think of us like a rare plant. It won’t survive if you just toss it anywhere in your garden. You have to put thought into what it needs… how much light, what kind of soil, how often and how much watering? You can’t recreate its natural habitat, but you can figure out how to give it what it needs. After all, you don’t want it to just survive, weak and withered. You want it to be strong. You want it to bloom.

(originally published in my blog, at angelnickirocksagain.Blogspot.com.)