I’m going to try and make this article a little more serious, and attempt to explain something that’s been on my mind for a while.
My parents have told me that, while raising me, they would have loved to have had the insight of a person with my diagnosis. They would have wanted my voice. The right doctors and therapists can do a lot to help, but there’s a certain clinical approach they have at the end of the day that doesn’t do everything. They have their symptoms, diagnoses, therapies, medications, their lists and advice, but what they don’t have, unless they have Autism themselves, is inside perspective. They’re not in our heads, they don’t know what’s going on.
I’m not a doctor. I’m not qualified to diagnose your child. But I’ve had 23 years to learn to communicate, and figure out how to say now what I couldn’t when I was a kid.
When I was small, the world was out of control and there was nothing I could do about it.
What I think a lot of people forget is that children don’t have the perspective of adults. For a grown-up, losing a toy (especially a small one) is just something that happens. It’s happened before and it will happen again. But for kids, that’s the first time it’s ever happened, or it feels like it. There’s no resistance built up against bad or intense experiences. It can be overwhelming.
Now imagine this combined with living without sensory filters.
My childhood was a constant flood of sensory input from all directions, and my little mind trying its best to sort it all while making sense of what’s happening. The brain makes rules, establishes them, decides what is what. It’s building a mental castle of order and stability, but it’s made of glass, and the slightest contradiction can send it tumbling to the ground. And because I was young and knew very little, I was getting new information constantly, and that castle rarely had time to get the walls up.
I don’t know this about most kids, but I learned this about me – I needed rules to live. I needed order, structure, and all the other words I couldn’t pronounce yet. I couldn’t just exist in a world that didn’t make sense and be content with it.
It started small. I would always organize my plastic toys facing each other. I paired them off. In my head, categorizing was a form of keeping order. It made sense. It was something I could control. The same went for my food: two pretzels at a time, two crackers at a time, one slice of turkey and one cheese in my Lunchables sandwich. I would re-stack paper three times to make sure they lined up perfectly. Everything had to be in order, because the rest of the world refused to be.
Everything happened so much. I couldn’t tune out anything, no matter how much I wanted to. Touch is a single sense, but sounds and smells pressed up to my nose and ears and filled them with no reprieve. The playground was a cacophonous battleground, the empty benches my only relief. I was always holding my nose, covering my ears, just trying to make it stop.
It never stopped, but it eased up. I’ve seen mention that children are the most innocent, that getting older hardens them. It’s always treated as a sad thing, but honestly, it saved me. I still have sensory issues, but f I were as sensitive to everything now as I was then, I’d never get anything done, because the world and all its stimulus would be constantly overwhelming.
I can’t pretend I know your kid, or what their symptoms are. But parents, please take it from me: if your kid says it’s too much, it’s too much. Loud noises are everywhere and they’re scary. Strong smells are suffocating. A single touch in the wrong spot on their arm can set their whole body on edge. They’re still developing their filters, their sensory strengths, and please have patience with them while they do, because there’s very little they can actually do to control it.
The world doesn’t have a pause button, but sometimes I needed one anyway. Sometimes I had to step into the other room, to hide, to eat by myself. That’s not always being anti-social or not caring about people. Sometimes, I had to focus on caring about me.