I can understand that in some cases it comes from a place of genuine concern and care for me, for example when I mentioned that a lot of things that exacerbated my social anxiety were just autistic things, she worried I’d be like “oh I can just bail on all social interaction now.” and then in an emergency I’d be super helpless.
Truly understandable considering she literally housed me for years when I was agoraphobic and watched me work really hard to overcome it.
But yeah, I absolutely get to give up on trying to be normal or do things the normal way.
Also, “But you shouldn’t let it define you.” is literally the fucking worst for things that are integral to who I am. It is only ever used for things *other* people don’t want to think about or be aware of. How about I don’t let *you* define me, and then I can figure out who I actually am without the social bullshit.
All kinds of things are inescapable and define me, but I get to determine *how* they define me.
I’m not going to let someone else do it just because my definitions aren’t comfortable to “normal” people.
Sometimes I feel like autistic life is like living with a screaming child and you don’t know what it wants, but the child is you.
Today I’ve been feeling worse and worse and it got so intense I was trying a million different things and rushing around in a panic because I didn’t know what was bothering me and couldn’t cope. Then as soon as I tried my ANC headphones? The whole world was just “hi Sophie, welcome back.”
I’ve been trying to work on my self awareness so that I can tell when things are bothering me, and I’m definitely getting better at noticing there’s a problem before it gets out of hand…
But I still suck at telling just what the problem actually is unless it’s super obvious.
It’s like “great, for once I notice I’m freaking out. What the fuck am I supposed to do about that?” lol
What I want to say about this is: wow that’s really annoying! Most of the time I can see it’s something that really doesn’t matter at all, I can do things in whatever way or whatever order and it will be fine.
But it won’t feel fine! And I’m torn between different options and feeling bad about it for no good reason. Who cares if I turn left a little more than I turn right in a day? Literally nobody is wronged, but I’ll feel bad anyway.
One of the best things about finally knowing I'm autistic is I can add "autism" to search terms that I've been stuck on for years and finally get a hit, like https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/16550/i-can-feel-electricity-in-insulated-cables---or-even-someone-s-skin-if-they-are-holding-something-plugged-in
Clearly pretty rare and I don't think I'm *quite* as sensitive as this person, but it's definitely something I experience.
Like the linked post, iPads are definitely something I notice the most, the back of an iPad can feel completely different when it is plugged in vs when it isn't. Sometimes if it has to charge and I'm not comfortable with the sensation I have to just put it down until it is done.
Sensation is stronger with movement, like I'm feeling the bumps of an EM field or something.
Also it is a little variable, don't know if it is dissociation, variations in the power grid, or both.
(Obligatory "autism is not a super power" statement.
This has been a hinderance or a bother far more often than it has ever helped anything.)
I spent maybe an hour pacing and ticcing, really having a bad time, getting nothing done and looping through the same thoughts before out of nowhere “oh wait… everything will get a lot better if I just put on some noise cancelling headphones and take a painkiller.”
I was really upset but not *noticing* that I was upset, or that I have other modes, I was just a ball of existential suffering that had no mind to move out of that spot.
Anyway yeah scary because… maybe someday that will stick for more than just an hour or so, that will be my life. Complete misery with no way out because I’m incapable of processing my situation, and incapable of communicating the problems because I don’t see them, they are just me. Forever.
A frog in hot water with the heat always rising. It sucks but my experience and my agency have no relation. I stay put and suffer because I forgot how to know better.
I don’t know if I’m explaining it clearly, how about this:
Picture a nightmare where you’re panicked by something that seems trivial once you wake up. As soon as you’re awake you’re like “wow the solution was simple why couldn’t I do that when I was asleep?”
It’s like that. I just have sleep-logic running the show rather than my waking-logic.
I’m experiencing the situation but I’m not experiencing enough of my own consciousness to process the situation and take agency.
Today I was getting tired and stuck on a bug, I thought it would absolutely derail me but a headmate stepped in, wrote a bunch of code and said “that should do it” then switched out. I was like “wait wait wait, don’t go, you haven’t tested it and I don’t know what you changed!”
They were like “eh, trust me, it’ll work.” And it did. I think that is pretty cool tbh but also frustrating, why can’t I be that awesome?
I mean, “I” (collective) am… but “I” (singular)? Not so much.
The irony of that post following the one before it in the thread is not lost on me :p
Anyway we’re okay now. It’s not like the issues the argument was about are solved, buuuuut we did manage to find ourselves a page that we can be on together.
I guess in hindsight it shouldn’t be surprising. There’s no real way for a traumagenic system to change/adapt/grow without potentially jostling some of that trauma. 🤷
Tempted to say something like “this thread will shortly go back to being mostly about autism and less about plurality” but then realised… nope it’s still my thread. I don’t need to hide any of the spice (though I also need to be okay with not sharing it also I suppose).
Anyway this thread will be whatever this thread will be.
Realising it is difficult to evaluate whether a pain is coming and going, or if it is always there and the headmates who tank it for me are coming and going.
The best I have is conducting a mental survey “should I take a painkiller” and if there is any “YES. ABSOLUTELY.” response, the pain is still there.
Lately I’ve been thinking that I have no way to tell if I’ve been in pain for years. I got an unbearable toothache quite a while ago and then it just stopped. Has it never stopped and part of me has just been working overtime to separate us from it? It would explain some things, but I just don’t have any way of knowing.
Wish my brain had like a debug readout so I could check what is actually going on in there.
So here’s something I think I can finally articulate: noise-cancelling headphones cancel The Noise.
Okay yes that seems like I’m saying nothing, but The Noise is actually *incredibly* taxing, in a way that is hard to understand until it isn’t there.
Part of my head is working literally all the time, trying to manage all the input and it just doesn’t acclimate to all the din it should. Noise-cancelling gives me a break I never knew I needed.
Every time I turn it on I feel my thinking get clearer, easier. There’s less strain. It is quieter not just in my ears, but in my mind.
If you’ve never tried ANC headphones I strongly encourage it. If you’ve got a brain like mine the relief it gives is so worth it. In ways you might not know you need.
Okay this part of the thread might be squicky to some but I need to talk about it.
I just had a shower and as ever, it fucking sucked. It’s an immediate powerful sensory overload every time, unbearable without extreme dissociation (like, switching through several headmates to get though it levels of dissociation). And the stupid thing is, I’m going to not believe how bad it gets. In a few weeks I’ll think “nah, it can’t be that bad, and I’m feeling strong today.”
And then right away it’ll be “HOLY FUCK WHAT THE HELL FUCK FUCK FUCK.” and I’ll literally be in shock.
Normally my sensory memory is fucking aces, but I guess for some traumatic stuff not so much.
All I get is this vague sense of dread. I know it’s something I dislike but part of me is always thinking I avoid it because I’m lazy or I like to be gross. But I’m not, and I really don’t. I used to think it was dysphoria and wanting to not experience my body but-
-that’s not the issue either (apart from the aches, I’m pretty comfortable with my body finally!)
So now I’m left just knowing that dread I feel is a repressed sense of how miserable I have to make myself just to be clean. And yeah, it tends to take a few weeks before I do it again because I don’t like not being clean and “well, it can’t have been that bad” and I’ll have another miserable experience.
Saw this today and it’s validating as hell. I frequently find myself arguing back and forth (with myself) “this didn’t used to be so bad, people saw us deal with it okay before” “No, people saw us dissociate so hard from our existence that the stresses became a diffuse haze to the point that everything sucked instead of having a few things suck a lot. It made those things a bit easier and everything else miserable.”
Changing the CW to emoji because it’s cute.
Anyway today I’m thinking about how I don’t remember most of last week, but the sound of a friend falling down the stairs 30 years ago is echoing in my head with perfect clarity.
Me: “Okay! I’ve got energy! I’ve got motivation! I’m going to do so much work today!”
My brain: “You’re going to yell random bullshit for 2-3 hours until you’re hoarse, then you’ll be unable to focus for another few hours. THEN you can work, IF I’m feeling generous.”
Something that bothers me the most about calling autism a “disorder” is that it implies a neurotype that is perfectly ordered.
Have you ever met a single person with a mind like that? They don’t exist at all (but if they did, I expect they’d be autistic).
Something I’m thinking about this morning is “non-verbal” vs “non-vocal”. It seems a lot of autistic folks prefer “non-vocal” because apparently “non-verbal” implies an inability to communicate at all… but I disagree.
When I can’t speak, I find vocal communication much easier! I like to think I’m pretty expressive and clear with simple voicing (“moan” type sounds of varying patterns and frequencies. Like, a “nuh-uh” is so simple and everyone understands it)
It doesn’t feel right to apply “non-vocal” to the times I am capable of being vocal, but my problem is verbiage. “Non-speaking” is technically correct but I don’t gel with it for… no good reason I can think of tbh.
tbh I really like “mute” but I worry it’s a term too nounified to use for selective mutism. Like, if I am “a mute” then it’s only sometimes.
Watched the new avatar movie and I’m psyched they made an autistic main character.
Okay so it’s not at all explicit and it’s implied that Kiri’s connection to nature is a kind of spiritual interaction with the world rather than stimming, and that’s what causes her to struggle with social connections.
But also, bro, that’s really REALLY autistic.
Like really, it’s a very to-may-to/to-mah-to distinction.
I’ve done that exact same thing watching caustics dancing for ages. The spiritual aspect of it is entirely down to your perspective. You really want to argue that my whole being getting absorbed into a dance of light isn’t a communion with the universe?
I dunno it has me thinking about the way autism gets framed and trying to take away those assumptions from how I view it myself.
Looking at our whiteboard has become super overwhelming. It feels like every headmate screaming their most urgent thoughts all at once, and I have the energy to do nothing about any of it.
There’s an “ask me for help if you need it” message there, but the one who wrote it is stuck and can’t front rn. Guess I’ll just lie down and wait for something to change.
“Oh yes finally! I have so much focus and energy today! I’m actually in the right headspace to-“
*headphones battery dies*
“oh no I cant brain plz let me go to bed”
It’s pretty shocking to, within a few months, go from
“this sucks but it sucks for everyone, right? If they can do it so can I. Somehow?”
to
“HOW IN THE FUCK HAVE I SURVIVED THIS LONG?! I am somewhat capable maybe 5% of the time, TOPS.”
And it’s not like I’m struggling more now, I’m just not spending that other 95% trying to guilt/shame/psyche myself into doing whatever I need to do.
In theory that is better but I used to live a life where I somehow convinced myself I was super capable while at the same time even the smallest task felt like lifting a mountain.
So fucking glad I figured out I’m autistic because now I have things like this appearing in my recommendations.
Like, this is actual advice that could really help me with things like those past couple of toots. Up until now the best advice I ever got was “just do it” which makes for a nice slogan but it never helped me in the least.
When I was pretty young I somehow got the idea that “talking to yourself = for real crazy” drilled into me.
So I was incredibly intense about avoiding doing it, and would only permit it in situations I could justify from seeing it in others. As if I could avoid “going crazy” just by not talking to myself.
It’s so stupid, I was loopy from the start. At least if I talked to myself I might have understood *why* better, and I’d definitely have had more good company.
Anyway, talking to yourself is awesome and everyone should do it. I’d especially recommend it if you are the kind of person who marvels at how clever everyone else is and figures things out more when talking to people - you might just process things better verbally.
Though I guess that is mostly thinking out loud, but it can be a conversation too. It’s fine, you don’t have to have other people in your head to do it.
I linked to a video on PDA hacks earlier in this thread that suggested starting a phone call before you have time to think about it, and I have to say that advice is great…
…a great way to remember why we don’t do that. Holy fuck I was so unprepared. It’s been a couple of hours and I still feel like the world is shaking.
Anyway plus side I now have an emergency dental appointment for next week. Should feel relieved but I don’t because phone call.
I guess thinking about it more, the lesson for me is “am I avoiding this because it’s a demand, or am I avoiding it because I’m anxious.”
Jumping in without thinking is probably good for the first reason, but it is aaaaaaaawfull for the latter.
@Sophie this unlocked some memories for me. when I was young I would constantly talk to myself in situations where I assumed I was alone and no one would hear me. turns out people in your household actually can hear you loudly chattering away to no one in the bathroom though.
Thankfully I never internalized that it was a harmful thing; just embarrassing to be caught doing. I still talk to myself all the time.
@Sophie hey. do you feel that after you started unmasking, pain affects you way stronger than before? i got wiped by ear pain --that in the past i just found bothersome-- completely unable to do anything other than lay sideways and conserve energy. after the pain subsided enough for me to chew without wincing --on the fourth day-- it took me two days to have enough brain-power to /check email and masto/ 😅😅
anyway 💜🫂
@Sophie this sounds like needing precision. vocal is about using voice. my patients (companion quadrupeds) are often vocal,never verbal. verbal is about using words. after my tonsillectomy I was verbal but non vocal.
I think sometimes the usage of non-verbal is non-vocal-verbal, which is social rather than strictly precise languages. I feel like your vocal non-verbal communication gets cut out in that model.
Sophie 🎲🏳️⚧️
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