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.


Looking for Utopia

The other night I realized that more and more often I’m daydreaming (or more truthfully, sobbing and wishing out of fear and desperation) of waking up from this nightmare. I imagine myself waking up with a pounding heart but as I realize that it was just a bad dream, I calm down. Unfortunately, that’s not going to happen. This nightmare is reality. This nightmare is my life.

Read that again.

I consider my life a nightmare.

Not because of the pain or the other symptoms. Not because of the limitations that my disabilities and conditions cause. Certainly not because I have a child with a disability (my child is a gift and one of the biggest parts of the happiness in my life). My life is a nightmare because of ableism. Because I live in a world that makes our lives a living hell. A nightmare.

Let’s go back to my daydreaming. What do I imagine that my life is like when I wake up and this horror is just a bad dream? First of all, my child is being respected for the person he is. He attends a school that’s treating him well, not trying to make him less autistic or hurting him by being inaccessible. This is the most important part but also the one that’s easiest to describe.

Then what? That was about my child, but what’s my life like in my daydream? Honestly, this is too hard to even try to write about, because spelling it out will make me face how unhappy I am with a lot of things. Therefore, I won’t write about what I really, really, really wish for. I can tell you as much as for me to not consider my life a nightmare anymore, I will have to have bodily anatomy. In my daydream, there’s no threat of having to undergo medical testing and examinations that will cause me harm. I have the right to say no without losing my financial support. Nobody will have the power to force me into medical procedures that will harm me.

That’s as much as I’m ready to display for now. To be continued, I hope.