I wanted to give you an update on how my autism is going. This is my autism fruit salad. Delicious fruits on a paper plate!
Since I first posted about my autism, I’ve learned a lot. It’s funny how people can find an idea that serves as a lens, to examine stuff through. Old stuff, and current.
I thought I had problems identifying the pain, discomfort, and other bodily sensations because of how things were in my family, when I was a kid. When I was little, I didn’t understand that I could ask for things. Or I didn’t think there was a point, because I was allowed a small range. My whole life was made of doing what I didn’t want to do. I just thought that’s what life was.
So needing less noise–what I needed didn’t matter. I hated most of what my life was full of. My need for no tv could never win over my dad’s need for always tv. So I just had to put up with a ton of things that hurt me. I got c-ptsd from the violation of my sensory needs.
But I learned recently about the propioceptive differences in people with autism. Some people with autism do not know how to comprehend the body’s messages. So it might not have been the family environment, that made me disregard my body’s messages–it might just be an autism thing.
Whatever the reason, it’s great to recognize that I’m very challenged in comprehending my body’s messages, so I can work to compensate. I can know a body part is having a sensation, but I have to really think to figure out–is it pain, discomfort, or just a sensation? Pressure, a slight tingle?
Do I need help with that sensation? Does it mean part of my body is having a problem, and I need to do something different? Is the sensation something I should tell other people about, or is it not relevant?
A classic example from my life is the stomach ulcer that almost killed me–I thought I had felt no pain, from the ulcer. When doctors in the hospital asked me if it hurt, they were confused when I said no pain, because the ulcer was huge. Later I realized my stomach had been hurting for about 20 years. But I hadn’t identified that sensation as pain or a meaningful sensation I needed to talk about. I thought the feelings of my body didn’t really matter.
Another example is I’ll be focused on doing something, stressed, and then something will shift in what I’m paying attention to, and I’ll be like–“Oh, I need to pee. I’ve needed to pee for more than an hour.” I couldn’t handle hearing my body’s messages, being too overwhelmed. So I just shut them off. I think that might be a proprioception difference too.
I thought it was just an embarrassing quirk, that I had trouble telling people apart, in movies and shows. When I used to try to watch movies and shows, I couldn’t follow the story because I couldn’t tell the actors apart. If I was watching with someone else, I’d be asking often, “Wait–who is that lady? Is that the same lady from before? Who’s that guy?”
It throws me off, when people I know get a haircut, because I identify people by their hair and voice. For a long time, I’ve known that. But I never called it face blindness. Face blindness sounds like a serious, real problem that other people have. Me, I’m just stupid and wrong.
Sad, isn’t it? But people have treated me that way. It’s hard to decide on my own–oh, I have this problem. It’s a legit problem that I deserve help with. Many people–family, friends, caregivers–have been assholes to me, totally ignorant about my needs being valid. I took it all in.
I have a phenomenal memory. I’ve made people uncomfortable remembering things they said 30 years ago. Or I quote from conversations that happened ten years ago, and people are alarmed. I thought memory problems were from having a bad memory, not an overly-good memory!
It was super frustrating to get criticized for remembering things I wasn’t supposed to. I had a friend who accused me of storing up things they said to use against them later. But I had no desire to use anything against them. I was genuinely trying to figure out how to relate to them, and using all the info I had available to me, in my memory. But my friend was hurt, that I’d over-remembered, and it was a factor in our friendship disintegrating.
It was so confusing. What am I supposed to do? I can’t turn off my memory. Was I supposed to pretend I didn’t remember stuff? How would I even know which things to pretend not to remember? It was beyond me.
Admitting to myself and other people the sensory sensitivities is very helpful. Denial was lonely. Admitting the problems helps me budget my spoons and plan accordingly, for social situations. In public, a lot of the painful factors I can’t control, so I just have to know I can only stay out for a short time.
I’ve come a long way, from telling no one about the sensory sensitivities, since–What was the point of telling anyone? What were they supposed to do? Vs now, telling the whole world.
I learned something important about food. My favorite foods were mostly carby soft homogeneous foods like mac and cheese, noodles, avocados. I thought I didn’t like veg because I was a bad person. People shamed me for liking my veg cooked soft. But once I told those people to take a hike, in my head, and I could cook broccoli as long as I feel like it, I’m fine. I like veg a lot more now.
My most hated foods are raw celery, jicama, water chestnuts. Fibery stuff feels wrong in my mouth. The crunchy, watery veg panics my mouth.
When I was a kid, I couldn’t handle onions in my food. It was the texture–their confusing transparent fibery solidness. I’d pick them out, and my mom hated that! At the dinner table, she felt disrespected?
What was I supposed to do? Her need for me not to pick at my food was in opposition to my sensory needs that mattered also. But she was the adult with more power, and her needs were more important. I needed to manage all of that, from a really young age. Not pissing off my caregivers was more important than anything, so I suffered in one way to dodge another.
Believing people when they tell me things gets me into so much trouble. This naivety. It’s beautiful and precious, but also dangerous. I forget to have my disbelief up all the time. I connect with people, get comfortable and happy, love someone a lot, and believe their performance. Then it’s like–oh. Whoops.
That and other social differences can be so difficult and lead to painful heartbreak. I struggle to learn how to relate to people. In some ways I’m great at it, but most ways I’m without a clue.
I’m learning a lot. Reading about proprioception difficulties, I remembered my Nana trying to teach me how to knit. I made the stitches so tight, it was impossible. I couldn’t moderate–I could only do maximum tight.
Similar was learning to write. I remember my writing was extremely dark, and I even tore the paper sometimes, with my pencil lead. I pressed really hard. Other kids wrote lightly or medium. My paper looked very different.
Looking back, I’d thought that was anxiety. I tried so hard to get things right. Now I think it’s an autism thing. I read other kids tear the paper their their pencil lead too.
Moderating socially is a big mystery. I could say nothing, or I could say everything. Usually it was easier to err on the nothing side. Our checkins have a five minute limit, in Las Vegas Radical Mental Health Collective meetings, with someone timing. That’s so we can feel safe knowing when it’s time to stop.
How often to contact someone, how excited to seem–even how long a paragraph or sentence should be are all mysteries I’ve worked hard to learn about. I overwhelm people all the time. I strive not to, but my instincts about rate of contact and how much to share are bizarrely unusual. So I study others and try to figure out what to do, but it’s only partly possible to learn.
I could say a lot more. Stimming, differences with how I process numbers and remember dates. Feeling my emotions at a high intensity. I really love a few certain things to a degree that could be unusual–dumpsters, pallets, trikes, graffiti, zines?
But this post explains a big part of what I’ve learned. Looking back at my life, I have my mental health diagnoses to understand challenges. But the lens of autism is a great tool also, to re-understand struggles. Like why I had so much trouble trying to work at jobs, and the discomfort people have had with me.
I try not to make people uncomfortable, but it happens. I never mean to do wrong. Sometimes I think I should leave society so I stop hurting people. I just don’t belong, and I’ll never figure out a lot of it.
But here I am, still people-ing. Thank you for hearing my extremes, and how my autism is going. I think it’s going great. I’m one of the happiest people I know. But normal is a whole other question.