From the inside, autism feels very different than it looks on the outside. Outside, it is about behaviors that demonstrate autism. Diagnosis for autism is about behaviors, from lack of eye contact to communication deficits, social deficits, repetitious behavior, and special interests. But sometimes it feels strange to me that this is how other people think of autism.
To me, autism is about sensory sensitivities, overstimulation, rules that make no sense to me, and people insisting that they're telling the truth when they don't and telling me they want me to tell the truth when they are going to punish me for it. Autism is about my brain spinning, about not noticing my body at all, about trying to figure out puzzles around me. It is about textures and smells and sounds that assault me that other people don't notice at all, let alone being bothered by. It's not knowing things that other people call “common sense” and being an expert at things that other people think are weird or useless. It's not having friends and not caring because people are terrible and mean. It's doing well at school except in subjects that are stupid and impenetrable.
The neurotypical world is often bewildering to me, which is why it's always amusing when I find yet another friend has been diagnosed with autism. Of course we find each other. We are safe with each other. We feel like we are allowed to relax and finally be ourselves with each other. We know what it is like to be unwanted by other people. We are kind to each other in the ways that we wanted people to be kind to us. We speak the truth and we like hearing the truth. We do not get easily offended. We do not assume things about other people.
One of the reasons that autists are often solitary or don't have normal social lives is simply because we get so much negative feedback very early on in our attempts to have social interactions with other people. As a child, I got hurt so often by friends that I decided I didn't really want any. I read books and played solitary games and I was fine with that, especially when I compared my life to the life of the social butterflies around me, who were always have a new drama about this person not liking that person. Who could keep track of all that? Who would want to? Not me.
On the outside, I know that I would have been seen as clumsy and struggling with all sorts of body-related skills. I didn't know where I was, often didn't feel inside of my body, would hit things accidentally as I walked along, and was terrible at any kind of sport. I knew all this, but inside of myself, I was trying to protect myself from pain. I was reacting in a fairly normal fashion to the result of me not being able to move well. I liked sitting instead. And also, I was good at certain things like climbing trees and swinging. Those were things that had a feedback loop I enjoyed.
Inside, I was full of words. I loved to raise my hand and tell the teacher the answer. To. Every. Single. Question. If she didn't want an answer, why did she ask for it? Inside, I was always confused when I was told that I was tattling. Didn't the teacher say that if you saw something wrong, to tell her? Why would no one give answers to simple questions? Why did they tell me that I'd understand when I grew up? How would I understand if no one would ever tell me the answer? Why did people roll their eyes at me and whisper under their breath about me being rude or blunt or outspoken when I just said the thing that everyone else was thinking about?
So many of the things I was told I would "understand when you grow up" at age 69 I STILL don't understand. I'm glad I don't understand some of them -- war, killing animals, any kind of injustice. But I also wonder if this ability to retain the clarity of our understanding (or lack thereof) of certain "human" behaviors is why adult autists are so often infantilized by others who have "grown up".
If growing up means accepting those things I found unacceptable as a child, then I'm happy not to ever grow up.
So much this. You and me both!