One Thing

Dear Addie,

This week, I was stopped dead in my tracks by what I thought would be a simple question: What is the one thing you would want people to know about autism?

The absolute nicest delivery man asked out of genuine curiosity. How we even got to talking about autism, I’m not even sure. But instead of immediately answering with the confidence of a Double Jeopardy question, I was stumped. Not because I had nothing to say, but the very opposite...I had too much to say.

Let me explain.

You see, Addie, when you live the life of autism every day, it’s impossible to boil it down to just one thing. I honestly don’t think I could describe any of my children by talking about just “one thing.” It isn’t one experience, one personality, one set of challenges, or even one story. It’s a spectrum disorder that, by all means, looks different from person to person, and even from day to day, for that matter.

So what would I want people to know?

I think I would want them to know that there is always so much more than what they “assume” they know. I would want them to know that some of their wild assumptions and theories, that often end with “you know what I mean” because maybe after they said it out loud themselves it even sounded, for lack of a better word, mean…are indeed quite hurtful, especially for the parents where the fingers often point. There is far more happening beneath the surface than what one can see.

I would want them to know that if you don’t answer or look them in the eye when you speak to them, you are not necessarily ignoring them. And that just because a sound, object, or feeling is rather insignificant to them, that doesn't mean it rings true for all...you could very well be experiencing it in a wildly different manner, causing you to become overwhelmed or overstimulated. When you are laughing, playing, talking, and seemingly having the best day ever...that doesn't just always come with ease, you're still working incredibly hard to navigate a world that doesn’t always make sense to you.

I would want people to know that autism isn’t something you can understand by just looking at someone or by having one conversation with someone. You have struggles, there is no denying that, but those struggles do not define you as a person. You, my dear, are so much more.

You are funny, kind, stubborn, silly, brilliantly smart, affectionate, and yes, at times complicated. You are wonderfully, unapologetically yourself. And you deserve to be known for all of those things, not just for the word autism.

So maybe that’s my answer.

If you want to understand autism, start by understanding the person before you start trying to understand the diagnosis. Because behind the word “autism” is a whole person, with a whole personality, a whole world, and a whole story that is definitely worth knowing.

I'm forever proud to be walking in this life with you, baby girl.

Love,

Mom