Since I've not talked about it in detail yet:
AAC is Augmented and Alternative Communication, basically any system to help people with difficulties communicating. This can be things like cards a person can display, to TTS (text-to-speech).
The AAC app I use is a TTS system that I can customise with common phrases and parts of sentences, type into for specifics, and easily display what I'm saying.
The app is super customisable, I can make my own categories and phrases in advance, colour them, give them pictures for their buttons, make the button display something different to the phrase (so I can have a button to say my address, without displaying my address in every conversation).
Link is here if you're interested, I use the android version which is free, but has some extra features if you pay: https://www.asoft.app/
(Changing meds while the seasons change)
WHAT THE FUCK ARE TIME AND TEMPERATURE!? THESE ARE COMPLETELY RANDOM PHENOMENA, THAT I REMEMBER THEM EVER MAKING SENSE IS SURELY AN ILLUSION!
Sometimes my body just decides to sleep and I have no idea when I’ll wake up or who I’ll be when I do.
Which might sound scary but mostly it’s inconvenient, I have things to do!
Like, if I recognise thinking “oh I was agitated before, but I’m fine now even though I’m in the same environment. I must have acclimated, awesome.”
There is now an alarm in my head that is like “WOAH. WARNING. WE DO NOT ACCLIMATE. YOU ARE DISSOCIATING FROM THE SITUATION. YOU ARE TAKING DAMAGE WITHOUT NOTICING IT. GETOUTGETOUTGETOUT.”
Which is useful information! But also it’s scary to know you’re fucked up and getting worse and that you won’t know how bad till later.
It’s fucked up that I get to do at most one thing per day, and how sometimes that one thing puts me out of commission for multiple days.
It is OP that some people can do multiple things in a single day. “Autism is a superpower!” Bitch you can’t say that to me when you’ve showered, done the dishes, and been to the shops all before lunch.
Also not super relevant rn but it’s on my mind: it’s fucked up that supermarkets with a quiet hour have just one hour a week and it’s at some complete dogshit time.
In theory it’s cool but honestly I think they are just picking a time when it’s not busy and deciding to save on lighting costs and paying someone to pick music.
It’s a beautiful evening, the sun is setting, its light shines through trees that blow in a gentle breeze, sending glowing dappled light into my room and FLASHING SO MUCH. I FEEL LIKE THE WHOLE UNIVERSE IS STROBING WHAT THE FUCK. THE FLOOR AND WALLS ARE WAVING?
Get the FUCK down out of the sky, sun! You’ve had your time today and I am DONE with you.
Finally watched Pixar’s Loop short, it’s really good! I especially loved the times it shows things from Renee’s view - I don’t think I’ve ever seen a camera move the way my eyes do before, focusing around whatever it is you’re actually paying attention to.
There is a meltdown in there and it’s definitely uncomfortable to watch but it feels true to me (though seems to come on much faster than I experience).
My friend said “How did you not realise you were autistic?” which is probably the best thing he could have said lol. Having people recognise my autistic traits and see them for what they are is actually really validating, and it’s a good question too!
The answer was because nobody explained what autism was, I was never given the opportunity to recognise it in myself. So having it recognised by myself and a friend too is super healing.
Something super shitty about meltdowns is they feel like they should be a reset. That they should just be a vent to release all the excess overload and afterward you’ll be ready to go again.
But it’s more like a whistling teakettle, you can take it off the stove and it will stop, but that water is still boiling hot, add even a little heat and it’ll go off again.
So something that I’ve felt on the periphery of some conversations with people who’ve known me for a while when I tell them about discovering my autism, is this idea that even “if” I am autistic, I shouldn’t give up on trying to be/act normal.
And after thinking about it for a while: yes I should. 36 years trying is long enough. I get to give up now. Give me a break!
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)
@Sophie cursed thing: I *very much* get The Noise (possibly a slightly different kind that you do because headphones don't always help, but I think it's similar), however my headmate doesn't
and it's like... clearly The Noise isn't inherent to cognition here, as I thought it was
but I can't seem to turn it off without like... stopping existing
weird isn't it?
@Sophie somehow end up with the opposite reaction, and I discover lacking The Noise makes me go completely insane by making every other stimuli comparatively stronger 
(I'd still recommend people at least try them, more often than not it helps ime)
@Sophie *sigh* a debug readout would have been so nice to have...
what i'm trying to implement is to insert songs in my "keep me regulated" playlist that trigger me into inquiring within "how are things? anything i should take note of?" by getting the system to work together in this --the song part touches everyone-- i (hope to) get them to lift whatever filters might be active at the time for a short while and not be overwhelmed.
not gonna lie, still struggling *a lot* to get this going reliably, but it has been by far my best shot at getting better at self-diagnostics.
@Sophie I think there is a way to encourage this kind of awareness. There needs to be a better word for it than "mindfulness" (maybe 'presence'?), But that's what you'd google for more info.
The gist:
Find somewhere quiet of words to sit or lay. Then: shut up. If thoughts made of words occur, don't respond, focus on your senses. Sight, sound, feeling. What textures are your skin touching? What does it smell like in here?
Any ignored persistent sensations should become clear
@Sophie there's a Netflix show called Midnight Gospel which, aside from being very woo woo about some new age/drug spirituality, does contain a pretty good guided meditation kind of thing for this
But yeah, on the whole; set aside some time to do nothing but listen. Set the goal to that, anyway. Your consciousness would be overwhelmed if you had debug readouts all the time, but you can file a request with your body to be temporarily informed of how it's doing
Sophie 🎲🏳️⚧️
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Léo 🦋⚲
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