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What I Wish People Who Doubt I'm Autistic Could See

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When I went to an amusement park the other day I basically had to give my husband a crash course in being a guide dog. I couldn’t see and hear right. My legs wouldn’t work right.

I forget this happens, because I am usually just putting forth such a large amount of personal energy and internal resources toward filtering and picking out and understanding the information coming at me, including the information coming from my own body. But when I’m really super burnt out, everything just kind of goes a bit haywire. I realize how much energy the upkeep is, and what a huge job it is to keep all my systems on track and in order.

I usually forget why people like to dismantle my autistic self in disbelief of my reality. I usually forget how much energy it takes just to see my surroundings in a way that I can navigate things usefully.

When this has happened before, say in a grocery store, it might have been with my mother. We are in the dairy aisle and maybe I’m tired lately. I am trying to find the So Delicious Coconut Milk among all the other cartons of milk/milk-type products and suddenly realize I don’t understand what I’m seeing.

“Mom? Can you help me? I don’t know what I’m looking at.”

My mother, thankfully, deals with this how she has always just dealt with life in general, and often me and what I need specifically: what am I trying to do, how can we get it done.

“What are you trying to find?”

I describe the color, the label, motion towards the area where I saw it last. She hands it to me and suddenly it’s recognizable. The issue is not that I can’t physically focus my eyes or that it is too dark or blindingly light. I just can’t make out what anything means or relate it to anything I understand.

I’m so tired that instead of all that visual information, the Wall of Milk Cartons filing through my eyes and into my brain in orderly fashion via some kind of filtering system which takes a huge amount of personal resources, it just floods.

It’s not sipping several cocktails. It’s a Purple Jesus of information.

“Here, taste this.”

Something engulfs my head. I’m not sure what happened, but there was cold and wet and a wooshing sound. Now I don’t know how to see the coconut milk carton I want that is probably two feet in front of me.

This isn’t easy.

It probably doesn’t make any sense to you if you don’t experience it. That doesn’t mean it is worthy of skepticism and invalidation.

What if we just ask people how they deal with challenging things instead of saying “Really? It can’t be that big of a deal.” How many ideas and resources, innovations and potential new tools would we be sharing?

The theme park, by the way, was still really fun. Sometimes we just need our people to roll with it and try to support how we need it.

The trying matters.

Getty image by tavan amonratanasareegul.

Originally published: January 28, 2019
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