What it Can Feel Like With Aspergers

Sitting in class, at a meeting, with a church group, or at work, I’ve been amazed at how Sia’s performance on Ellen with Maddie Ziegler so encapsulates how I can sometimes feel having Aspergers in an organized group of people.  It hits on so many levels.

All of the people are in uniformed boxes in a perfect line, perfectly in-tuned to the happenings of the room. Identical in appearance, they seem to all be saying the right words at the same time. But the little girl in the front is not aligned with them. Coming out of her box, smeared with pink paint, she sticks out of the perfect array like a sore thumb. But the kicker is judging by the rest of the room’s lack of acknowledgement of this, her outward appearance must reflect theirs exactly. They see another girl, immobile, body covered by her box, standing in line, and speaking just like them. In this video, we see her internally. We see her.

While the room carries on without missing a single beat, the girl is engaged in her own internal struggle against her own body. She resists strikes, she comforts, she fights. Distant, she is aware of what they are doing and makes attempts to join. But her body is under siege and these aspects are much more prominent, much more overpowering than whatever is taking place in the room.

I can’t explain why exactly, but I just know in some social situations, that is exactly how I feel. My muscles are flexed in resistance, my skin is crawling, and I feel like I want nothing more than to burst out of my body. I want out of that caged room where I can release these muscles, allow my face to show the hurt and confusion inside, be able to mentally process, escape from the overbearing stimuli and triggers, and to have the meltdown I am resisting, the meltdown I am holding back with every being of my body.

Sometimes, things feel normal. But sometimes they feel like this. Even something seeming as insignificant as a vent blowing cold air can make a meeting unbearable. I can’t escape it. The cold almost feels like it can hurt, but yet it keeps coming. My muscles tense fervently from the burning chill. It’s not long until they begin to feel tired, but there is no relief, there is no letting go of that tension because the vent of cold air keeps coming. It never stops to allow me to release this tension and rest. It rattles my papers, blows at my clothes, and I am so angry with this inanimate object. I am angry at myself that my body just can’t be, I am angry I’m not able to keep up with the room, and I am angry at how small this thing is that’s upsetting me so much. Being on edge from this stimulus tends to trigger sensitivities to other stimuli in the room that wouldn’t have bothered me otherwise. Other unbearable things go on mentally and physically, but remain entirely hidden from the everyone else with the desperate work of my exterior facade. It becomes apparent the only relief is for the room to be done. I struggle inside until it is over, counting down the minutes. But for everyone else, it is a normal meeting. Everyone else gained content and social fulfilling. And I appear just like them, held to the same accountability of knowing, and maybe looking irresponsibly spacey and inattentive.

Having Aspergers, I whole-heartedly connect with this video: The unnoticed battle the little girl portrays against her own body. The urge to move, break out, struggle, fight an unbearable fight, while no one around you misses a beat.

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    • Great to hear your support. I’m new to the whole title of “Aspergers” so I’m still not always one-hundred percent sure if what I’m writing is just me, or a real thing! Thanks!

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  1. Have you watched any interviews with Sia or read some interview where she talks about herself, her life, her experience of being in this world? She is the female celebrity I most strongly connect with and suspect of having aspergers (she says she’s been diagnosed bipolar, but there’s something about her eyes and I get the feeling from her personality that she’s a 12-year-old-girl trapped in an adult body. That makes sense also when she’s always using 12-year-old Maddie Ziegler as her personification/avatar in her videos).

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