Unpacking but Lacking Words

Content Notion: This post includes internalized ableism.


I’m unpacking. Piece by piece I’m exploring myself. My autistic self. Experiencing myself as an Actually Autistic person. It’s hard work, but it’s necessary. Around a year ago I reached a point where I could finally start the unpacking and as painful as this year has been, it feels like the only way to ever make peace with myself.

Unpacking means reliving a lot of very painful experiences. On one hand, I’m starting to understand that many situations in my childhood were very hard for me. When I think about the times I couldn’t stay in my classroom and escaped in panic without even trying to conceal it, I’m still ashamed, but I also feel some sense of compassion for my eleven-year-old self. I can still feel what I felt back then, all the painful sensations that went through me and how my thoughts crashed into each other, but now I have words like meltdown and sensory overload to use instead of the contemptuous words I was told back then.

On the other hand, there are so many words I still don’t have. It’s like I’m picking up familiar things from a suitcase, seeing them clearly in front of me without knowing what it is. My experiences are clear, both memories from my past as well as things that are happening to me now, but I don’t know what it’s called. This is contradictory, I know, but I’m talking about experiences that are crystal clear but messy and incomprehensible at the same time.

Sometimes when I read about other autistic people’s experiences I recognize myself and if I’m lucky, it gives me clarity. Somebody describes one of my unnamed experiences and suddenly – comprehension. It gives me words that alleviate my confusion and make it possible to grasp an experience that used to be elusive. It gives me a temporary peace of mind, but I have so much more to unpack and understand.

This is one of the problems with how autism generally is described by many professionals. Most of the times, it doesn’t give me any clarity at all and it certainly doesn’t center autistic experiences. The dehumanizing vocabulary that is often used is harmful and not contributing to self-understanding. Besides from the obvious problem that it’s condescending and reinforcing ableism, it’s also very often obscuring autistic experiences.

My search for the missing words will continue, and I really hope that one day I won’t be this confused and frustrated anymore.


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