My Autistic Sensory System is a Demanding, Bougie Princess

Continuous Line Drawing by Jackie Schuld

We frequently hear about how much autistics like consistency: the same food, the same clothes, the same environment, and more.

I fall into that stereotype as well. I breathe a sigh of relief when I step into my home. I love wearing the same thing all week long. I will drink the same beverage, and that beverage alone, for months.

But here’s when I fall outside of the stereotype. I will suddenly, out of nowhere, crave something completely different. Crave doesn’t even seem like the right word. It is like a demand and if I don’t do it I can barely concentrate.

Let me give you some examples:

• My favorite way to wear my hair is down, with the top portion of my hair pulled up into a little bun. This keeps the hair from brushing against my face, which I hate. If I can get the bun done just right, I cannot even feel that it is there. I will go out like this every single day, until suddenly, out of nowhere, my hair is driving me NUTS. It must get off of my neck and completely out of my way. I struggle to get all of my hair up without it pulling in some capacity, but I will fight with it until it is just right.
  

• On Monday I keep trying on outfits to wear until I find one that feels just right. It feels so good that I will typically wear it every day that week. Then, suddenly, it doesn’t feel right. Something will be too tight. Or not soft enough. Or too loose. It’s like I suddenly cannot stand it and must wear something else.
  

• I’m very particular about how I like to sleep. I want extra soft sheets and just the right down comforter. I have pillows to perfectly support my side sleeping. This all goes well, until suddenly my body decides this is NOT what it wants. It hates this pillow and it hates this comforter and the mattress doesn’t feel good either. I MUST find an alternative. This is why I now have 4 drastically different kinds of pillows.
  

• I will find a few foods that taste perfect to me. It’s more than taste - the texture is right, it doesn’t impact my digestive system, and the flavors hit in the right places in my mouth (yes, it’s a thing). Then suddenly, I will hate the thing I’ve been eating. I will despise the texture or where the flavor hits and I won’t eat it for months.

All of these examples tie to my sensory system. It is a fickle beast. It is extremely sensitive and wants things just so. Until it wants them a different way.

This is why my sensory system needs options. One day I might crave bright light. The next day I might feel far more comfortable in a dark room. One day I want to be in tight clothes that compress my body, the next day I can barely stand to wear any clothes at all.

I cannot predict these changes. Most of my life it has been pretty maddening. It’s also been very frustrating for people around me. Comments like, “But you used to love that restaurant, why don’t you want to go there again?” or “We just bought this nice comforter for you and now you won’t use it?”

I get it. It pisses me off too. When I’m being hard on myself, I describe myself as a demanding bougie princess. That might actually be the perfect way to describe my sensory system, but it is not the perfect way to describe ME. I am separate from my sensory system. I’m not choosing to be picky or to have certain things not feel good.

It’s like my sensory system takes over and I have no control. My hair MUST be off my neck and I CANNOT eat that food item I used to love. They don’t feel like choices.

I don’t usually know why it happens. Sometimes I can see some ties. Like if I start to get upset about something, I usually want to pull my hair off my neck. However, most of the time, my sensory system does what it wants without explanation.

I can choose to ignore it or fight it, but that just makes life miserable for me.

So I’ve learned to give it options. So the princess can calm down and I can go about my life.

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