Mastodawn

Sophie 🎲🏳️‍⚧️Apr 20, 2023

🧵 Ok so I’m just starting a thread of autism research/thoughts so that it can be muted if you want/need that:

Sophie 🎲🏳️‍⚧️Apr 20, 2023

“Many autistic people report not being able to enjoy humour if it’s at somebody else’s expense.”

This is the kind of thing that makes me worried about people as a whole, I always figured this was true for everyone and the only reason people laughed at “punching down” jokes was because they didn’t properly understand what the joke was about. I don’t know how to feel about a world where people really do understand and just, find it funny anyway…

Sophie 🎲🏳️‍⚧️Apr 20, 2023

As an example, when I was little my dad got me some books of anti-Irish jokes and at the time I loved them. I could read them out and everyone laughed, but then I grew up and realised wow, Irish people are actually people! That kind of thing just isn’t funny to me at all anymore. So I always assume laughing at someone’s expense is a result of immaturity or being ill informed? Can people learn and then still be assholes? This can’t be right, right?

Sophie 🎲🏳️‍⚧️Apr 20, 2023

Part of what I’m doing is listening to a lot of autistic people to hear about their internal experiences and see what resonates, and in the process I’m finding people I wish I knew about on YouTube much sooner. Eg, this is a great video worth watching outside the context of this thread

https://youtu.be/Nnd74yyf4nQ

You're Wrong About Autistic Emotions

YouTube

Sophie 🎲🏳️‍⚧️Apr 20, 2023

Okay, yeah, I’m autistic.

Sophie 🎲🏳️‍⚧️Apr 20, 2023

In the end I couldn’t really find anything that could disagree with that conclusion, I even went to research melt/shutdowns and that only triggered some stuff I didn’t need to remember. It all just makes so much sense, it’s so relatable, I’m autistic. Feels like it’s heavy and a relief at the same time somehow.

Sophie 🎲🏳️‍⚧️Apr 20, 2023

So yeah, expect toots from me on this topic as I figure things out personally. Like I’ve had a lot of thoughts on where stims and tics meet/overlap and I expect it’s going to take me a while longer to know what the fuck is up with that, especially since I’ve heard personal descriptions of both that are fucking IDENTICAL.

Sophie 🎲🏳️‍⚧️Apr 20, 2023

Also given I’ll be tooting about the topic, I feel I better add a disclaimer to my bio that the puzzle piece in my username is unrelated…

… I mean, it’s completely related since it’s my current special interest, but it’s not related in THAT way.

Sophie 🎲🏳️‍⚧️Apr 21, 2023

So I saw a couple of things about how autistic folk who have been masking without realising for a very long time tend to dissociate a lot from their bodies to cope with overwhelming sensory information, and that it can be beneficial to consciously try to listen to your body more, a little at a time.

Anyway I’m rediscovering all kinds of sensations and it’s A LOT. I guess I shouldn’t be surprised but yeah, it’s no wonder I had to switch off to cope. A middle ground would be nice.

Sophie 🎲🏳️‍⚧️Apr 21, 2023

Examples:
- I haven’t shaved my legs for a little bit, they feel like sandpaper against each other
- I feel like I’m noticing every bump and motion in the building, when a neighbour moves around I worry the floor will collapse
- The carpet feels like scratching on my eyes if I look too long
- Some lights are just too bright, I have to cover my eyes to be in the room
- Water on your hands, not the wetness necessary, but the change in temperature, it starts to feel like freezing ice

Sophie 🎲🏳️‍⚧️Apr 21, 2023

There’s a lot of other things too, and it can feel like I’m aware of it all at once. “Listening to your body” seems more like a “floodgates opening” thing than a “try a bit at a time” thing.

Sophie 🎲🏳️‍⚧️Apr 21, 2023

I guess I’m glad I gave it a shot though, by experiencing it presently and knowing what I do now, it means I can recognise all the things I did without realising to cope with it. I can make actual choices about which I want to keep up, whether they are worth it, what other options might be, and maybe I’ll find times I can turn off the numbing and enjoy it.

Sophie 🎲🏳️‍⚧️Apr 21, 2023

I probably should try to find ways to make my sensory experience a little easier I guess, even if I’m dissociating and ignoring my senses, it doesn’t mean they aren’t still screaming.

Sophie 🎲🏳️‍⚧️Apr 21, 2023

Um, holy fuck, it seems like most of my childhood memories are linked to senses? I just remembered SO MUCH about my first year of primary school! I was feeling chilled so I tried to imagine a time when I was warmer, cue a memory of summer in the playground and then a flood of connected memories came!

Bonus: the memory of being warm helped! I don’t really understand but maybe my memory isn’t as bad as I thought, I just don’t know how to use it?

Sophie 🎲🏳️‍⚧️Apr 21, 2023

Anyway, we had frogs! They were so cute! I cried when the last one was released into the school pond because it was my friend (one that was perfect, because we were always on opposite sides of glass lol)

Sophie 🎲🏳️‍⚧️

Just so many things clicking into place, like “how come everyone else can look forward on a bright sunny day and I can’t?” There’s hundreds of little things like that and suddenly I have an answer for all of them.

It’s simultaneously like I’m knowing myself better than ever, but at the same time it’s so huge a change in perspective of myself I feel like I have no idea who I am. There’s maybe some version of me that can know who they are in the world? That’s wild and scary.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Learned that sympathy and empathy are not the same thing and I’ve only kind-of been performing one and feeling the other. Which is like, okay sure, yes it’s mind blowing but add it to the list or whatever.

What is not okay are that one place’s definition of one matches others’ definition of the other and vice versa. And then there is affective empathy vs cognitive empathy and all the terms and definitions are just put in a blender.

Fucking standardise your shit, society!

Sophie 🎲🏳️‍⚧️Apr 22, 2023

tbh I think this is probably something that just isn’t understood properly anyway, since my emotional experience is hard to map exactly to any of the definitions I find.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Like, I think sympathy is something I perform as an immediate response to stuff, but it turns into deep empathy given time and thought? It takes less time if it’s something I’ve experienced before (first hand or with someone close).

When someone says something rough and others are like “I feel bad for you” I’m usually at “I don’t understand yet but I want you to know I care about you so I’ll say I feel bad for you because that’s what people who care do.”

Sophie 🎲🏳️‍⚧️Apr 22, 2023

My main feelings at the time are ones of distance and sadness at the distance- that someone I care about is out of reach and I can’t understand or help them.

Plus the usual “wait fuck what is this some new social test? Quick, act like a human, how would a human act right now?”

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Also of course there are a bunch of times I don’t react at all because I don’t even realise a problem has been presented until way later. And then I spend a long time wondering if I am supposed to go back to the person to talk about it or if that is weird.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

There was a time my mum told me that she very nearly had an abortion when she was pregnant with me, but it was a little euphemistic so I didn’t notice until on my own hours later and had to figure out how to talk to her about it to say it was okay and she didn’t have to feel bad about it. That is maybe another story but the point is she was unloading a huge emotional burden she’d been carrying and it was just so alien to me I didn’t even notice at the time.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Fucking hell recalling this kind of story and it sounds like such cliché autistic stuff. It’s fucking wild how I’m only now realising it.

If I’d ever just taken five minutes to examine my life with a “Autistic maybe?” lens I’d have figured it out in no time. 🙃

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Just want to take a moment to say how validating it is to hear other autistic people talk about their experiences. So many little parts of myself and my life I thought were wrong, but it turns out they are just different to what was around me (and are shared with a whole lot of people after all!)

Sophie 🎲🏳️‍⚧️Apr 22, 2023

It lets me really feel like I don’t have to be so sheepish about my quirks.

“Why don’t you like beans on toast?”
BECAUSE BEANS ARE FUCKING WET AND TOAST IS FUCKING DRY. WHAT KIND OF MONSTER ARE YOU TO THINK THEY ARE SUPPOSED TO TOUCH IN ANY PLACE BUT MY TUMMY?!

I mean, I’ll probably not be quite so harsh lol, but there’s a new confidence in myself I never had ❤️

Sophie 🎲🏳️‍⚧️Apr 22, 2023

But yeah seriously, every time someone talks about how they have focused so much on trying to seem like they are paying attention as a normal person that they didn’t notice what was being said, I feel so connected and real.

And then the shame of feeling like you’re lying by smiling and nodding as if you understand? Ugh I’m just not going to sweat it anymore. I’ll listen my way or not at all. 💪

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Okay so here’a a story. When I was a kid, I was a “picky eater” - something that was not especially indulged by my parents at the time. They took the stance that I’d simply learn to eat properly or go hungry, but when faced with food that grossed me out I would always choose staying hungry. I developed extensive techniques to avoid food to accomplish this!

Sophie 🎲🏳️‍⚧️Apr 22, 2023

First of all, meals at home: I was expected to clear the plate, and wasn’t allowed to leave my seat until I did. I would spend literal hours poking at peas with a fork (genuinely doing my best to try and make myself eat, but you can’t do what you can’t do).

My parents did not have the patience to oversee me for that kind of time, so when they left the room I’d sneak little bits off my plate and into the bin. I did it gradually because I was a cunning kid!

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Sometimes I’d get caught and yelled at or worse, but I kept doing it for any meal I couldn’t stomach. For the most part I just got really good at wasting meals my mum cooked. (Sorry mum!)

But that’s not the interesting part of the story, see my mum also made my packed lunches, so I had complete adventures disposing of sandwiches I didn’t like.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

At first, I used the bin at school. This worked for a while but I think a teacher found them a couple of times and started looking out for who was doing it, so my parents found out. From then on I had to bring home evidence that I’d eaten the sandwiches: a display of my lunchbox including the used cling film. Easy to do but there was no bin between my house and school, but there were people’s gardens, bushes, flower beds, the woods.

I left uneaten sandwiches EVERYWHERE!

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Buuuut after a while I started feeling guilty, plus it felt like such a big risk. If anyone started to talk about sandwiches appearing everywhere then my parents would know it was me, I had to do something else.

So I started unwrapping my sandwiches and hiding them under my bed.

Look in my defence I was a child, I didn’t know what would happen, just that they were hidden.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

So obviously my bedroom starts to smell, my mum decides to clean it and finds a pile of mouldy food under the bed.

From then on, I had to have one of the school dinner ladies watch me eat during the lunch break. But I still couldn’t make myself eat things I didn’t want to, eventually they got tired of spending the whole break waiting for me to eat something I wasn’t going to eat, I went back to binning sandwiches I didn’t like, and everyone just kind of accepted it I guess.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Anyway the point of the story is that I went to absurd lengths to seem like the person everyone wanted me to be, and even though I knew I couldn’t do what they wanted it still never occurred to me that I couldn’t become that person either. Getting a good perspective on yourself is surprisingly difficult, but tbh I’m proud of that hungry little food-stashing kid burying sandwiches under some roses. They struggled but figured out a way to get by.

Sophie 🎲🏳️‍⚧️Apr 23, 2023

So I’m watching a lot of autistic tiktok compilations now because they are free piles of human connectivity just for me, but there is a problem.

In a few there is something I’d describe as a sort of autistic expressiveness. It’s super authentic, sincere, unreserved, and even joyful, in a way that is very clearly NOT neurotypical - and I have a bad reaction to seeing it. I feel so uncomfortable, “😱 oh no, you’re not supposed to be like that!”

Sophie 🎲🏳️‍⚧️Apr 23, 2023

My reaction is clearly some internalised unpleasantness that I didn’t know I had. It probably played a big part in me not realising I was autistic by making me averse to something so beautiful that I wasn’t allowed.

I thought I’d unlearned the “be normal” rule years ago but there’s still a lot of work to do.

Sophie 🎲🏳️‍⚧️Apr 23, 2023

Just to say it and be clear, I don’t like seeing autism as a disorder rather than just a different neurotype.

And frankly, it’s really bizarre that it is treated like a miserable condition by neurotypical people who will get tired of their favourite song if they listen to it on a loop for too long. 😛

Martijn Frazer Apr 23, 2023

@Sophie ooooh interesting!

Esme Povirk Apr 22, 2023

@Sophie I'm so sorry that happened to you. I think it's more understood by parents now that it's not ok to try to force their kids to eat specific foods/amounts.

I remember I just wouldn't try to eat or try to hide that I wasn't eating. To my kid brain this seemed perfectly reasonable - I wasn't going to lie but I didn't want them to go to extra trouble. I don't think I had to do that very long before my parents started working to accommodate my tastes.

Esme Povirk Apr 22, 2023

@Sophie I think this is a recurring theme for me: I was never willing to misrepresent or doubt my experiences. I used to assume that the way I experienced the world was fixed and could never change. I also assumed others had similar experiences, and figured if everyone hid them nothing would change.

Unfortunately, kid me resented others for that. I'm sorry, I know you were doing your best like we all were.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

@madewokherd I’m glad you were able to be like that! Unfortunately it really wasn’t safe for me to try and be myself at the time. I got there eventually though :)

Esme Povirk Apr 22, 2023

@Sophie I'm crying about this now. I'm glad I was too, and I think it protected me in some ways. But it still really sucked and left me with trauma to face now.

Sophie 🎲🏳️‍⚧️Apr 22, 2023

Esme Povirk Apr 22, 2023

Alonely0 🦀 🇪🇺Aug 10, 2023

@Sophie This one hits the hardest...

Esme Povirk Apr 22, 2023

@Sophie This relates so strongly to plurality for us. Some of us are good at feeling one or the other of those, some of us are good at emotionally supporting others in different ways, and some of us are not and if no one is there who knows how to give support then we can't do that even though we want to and we're learning to accept that.