Tag: autism

Orbital Mechanics

When I was younger, I explained my place in the world through the metaphor of an article in Scientific American.

The moons that we know of, the article said, occupy certain types of orbits– certain shapes, certain distances from their primaries. This is not because other types of orbits are impossible, but because they are less stable. A moon can be created or captured into any one of many unusual orbits, but over time, one of two things happens: it either is pulled into a more normal orbit, or it falls into its primary and is destroyed.

In my mind, this was a metaphor for the experiences of people like me. (At that time, that meant a nebulously-defined group of social outcasts– I had barely even heard the word autism– but in retrospect, what I meant by “people like me” overlaps with “people on the autism spectrum” pretty closely.)

What happens to moons also happened to us, I thought: we either assimilated or we crashed.

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The strangest thing about this, in retrospect, is that I thought of myself as assimilated.

I wasn’t really aware of people who “passed” better than I did as people like me– I don’t think I realized how good at passing someone could be, while still being fundamentally like me. In fact, what I had in mind was not so much passing as simply awareness of being different (and therefore bad.) Not passing, but hiding.

I never passed uncomplicatedly as normal, but– to the best of my own self-awareness, which was not all that good in retrospect– I avoided doing anything obviously weird, and I thought I was successful. I had a mental list of things that I might want to do but shouldn’t, because they were weird, and I followed it. I was successful, in that I didn’t usually receive overt negative attention or bullying.

Looking back, I was still incredibly weird. But I watched my even weirder classmates do things I felt were terrifyingly obviously bad, and be mocked and ostracized for their actions, and seem to not notice. They didn’t seem upset. They didn’t stop. I wanted to know how they could do that.

So, I thought, they must be too far away. They must be too different to be nudged by gravity and peer pressure into a normal orbit. They’re going to crash, or else they’ll slingshot away into space, beyond any contact with the realm of normal, and never be seen again.

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I want to send my love to everyone who passes ten times better than me, and spends ten times more effort to do it.

And to everyone who caused me secondhand embarrassment. I tried not to show it, and I liked you anyway.

Disability language

I choose to call myself autistic/a person with autism (I don’t have a strong preferenc between those, personally) rather than a person with Asperger’s Syndrome/an aspie/etc.

Asperger’s Syndrome language would probably give my listeners a superficially clearer understanding of me, but I prefer not to use it. It would be an understanding based on stereotypes, first of all, and it would also be superficial because the parts of me that those stereotypes describe are superficial ones.

Having a pop-culture-stereotype knowledge of Asperger’s would tell you a bit about how I talk and how I act (taking things literally, infodumping, blank facial expressions/monotone voice), about my history (being in gifted programs and accelerated classes as a child), and I guess about my interests (since I have a degree in a STEM field and am somewhat geeky).

It wouldn’t tell you anything about what being autistic is like for me, or what accomodations I might need, and those are the things I most want to tell people about when I tell them I’m autistic.

Even those things about how I talk and act are only true some of the time. I can sometimes be very verbal, I can debate, I can infodump, I can be pedantic. I also sometimes find it difficult or impossible to put my thoughts into words at all.

I don’t know which of those states is actually more common in my life, but I care more about the second one. It’s more a part of my identity, of how I think of myself. My verbalness is about other people, focused on other people– on explaining things to people and wondering whether I’m communicating effectively. The uncertainty of words, the tenuousness of words, is about me. I’m not a person who talks a lot. I’m a person who sometimes talks.

Being associated with those Asperger’s stereotypes feels acutely uncomfortable to me, precisely because they almost fit. I would much rather deal with confusion and lack of knowledge about my label, or with stereotypes that I can completely deny, than with stereotypes that don’t fit me but convincingly seem like they do.

18/18: Afterword

Well, there you go. That’s an overview of what I’ve spent the past couple of years learning. I wrote this for my partner, Sparkly, in an effort to make up for the sudden and unpleasant way ey found out about my questioning and research into autism. The style is simple and conversational because of that; this is what I’d sit down and talk to em about, if it weren’t so impractically long. I hope it can be of use to someone else, too.

My word processing program tells me this document is about 8300 words and 16 pages long. I may edit it in the future, and there are still a few sections that I decided against including which I might bring back as appendices, but the main body is something approaching finished, at least.

I owe a huge debt of gratitude to the authors of every blog I’ve linked to here, and to many others. I’ve tried to put what I’ve learned into my own words, as clearly and succinctly as possible, but I owe this knowledge to the community of autistic writers and activists that I’ve found online. Through writing about their lives, they’ve helped me understand my own.

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It’s entirely possible that when I went through this series replacing copy-pasted urls with names and links, I may have put the wrong name with the wrong post. If you notice something like that, please let me know. Also, if I’ve linked to your writing and you’d rather not be mentioned here, let me know and I’ll remove it.

So a thing happened.

It actually happened about two years ago.  Kade Hanegraaf is a teenage boy who is Autistic and has Tourette’s Syndrome.  Tourette’s can cause all sorts of different “vocal tics”– meaning, repeatedly saying words or making sounds and not being able to stop yourself.  For Kade, it included screaming at the top of his lungs, many times a day.  When he was fourteen, his family had him get surgery on his vocal cords to prevent him from screaming.

Why this is not quite as awful as it sounds:

The surgery doesn’t prevent him from speaking normally.  In fact, Kade’s doctor says he is able to speak more easily since the surgery.

Why am I still saying this is awful?  Well, I tried to summarize it for myself.  I said this:

“They didn’t remove his ability to speak, just his ability… to… scream?” 

It still sounds fucking dystopian.