Also ngl it makes me super wary of things I *need* to do.
Case in point: I've needed to shower for maybe a week now? I'd been avoiding it because it is just so overwhelming. This morning I finally thought "fuck it, I'm in a good mood and feeling capable! Let's do it!"
And then I proceeded to have an AWFUL 30 seconds where I felt every wet and hot drop of water slamming into me and running through my hair, I might have screeched, I don't know.
I just realised, if my tics and autism are connected,
that means I have autis tics!
Looking up the local autism group that the psychologist recommended, and see they associate with the police *a lot*…
Yeah I’m going to be honest I’d rather check out the other one with puzzle pieces all over their website that seems like it’s 99% for autism mums.
I can definitely imagine an argument (however iffy) in favour of a group working with police for the purposes of training and mitigating police mistreatment on the basis of them just not knowing about autism but…
You’re retweeting the police commissioner on shit that has nothing to do with autism, using the group account too. And somehow you are also getting funding from the police?
That doesn’t seem safe at all to me. Big pass.
The psychologist did also recommend a few not-autism-related things, but they are all either CBT (been there) and/or trauma recovery/support (which I think I’m mostly done with by now).
It’s weird that realising I’m autistic is a lot of learning that things were just not made for me, and then I find out that even the things that were made for me aren’t really for me.
Anyway I don’t think I really *need* anything besides information right now, and I’m not having any difficulty getting that. I think most of this psych process is just so they can feel they aren’t completely abandoning me once I’m discharged.
All I needed from them was to know if my tics could be helped or explained and I got the answer, next I can figure out how I deal with that answer on my own.
Me (learning about how some people with sensory issues can find lights/sounds or other stimulation to be very painful): Wow that’s rough, I’m glad that doesn’t happen to me.
Me (hearing a sharp sound in a bright room): Ah! Ow!
Ugh even the little tinkle sound ivory made when sending that toot, I felt it in my neck.
Anyway I’m having a particularly sensitive afternoon I guess, but I’m just trying to enjoy how funny it is that I continue to be completely oblivious about what my own experience is, even when I’m trying to focus on it. Of course I’ve dealt with painful light, sounds, textures, smells, etc… but only now do I realise OH, that pain is pain! It counts as pain!
Great, turning my volume all the way down it still makes the noise, gonna put my iPad under a pillow to send this one but I had a thought I want to share:
It’s interesting how something as apparent as pain can be there and not noticed because like, it wasn’t supposed to be there. And I don’t mean in the sense that I shouldn’t be experiencing pain, but that this pain in particular was not socially recognised so I was unable to truly see it for what it was.
Unlocked another memory of doing autistic shit as a child:
When I was really young, I loved to answer the front door. LOVED IT. I’ve had a much more troubled history with that since then, but at the time it was kind of predictable, it was only ever one of three things and I could excel at the appropriate responses to each:
- Post, I take the post upstairs to my parents
- Guests, I go up and tell my parents
- My bossy friend, I do pretty much whatever he wants to do
BUT!
One afternoon I heard the doorbell, rushed excitedly to the door, swung it open…
And there stood a random kid from school I didn’t talk to, who smiled and said “trick or treat!”
I immediately slammed the door shut, locked it, and ran upstairs. I was not prepared for Halloween lol, and so yeah I didn’t excitedly rush to the front door after that.
See, every year at about this time I’ll post something like “we’re not destroying the environment fast enough lol” because I’m having a hard time with hay fever
Now, I realise “there’s probably a link between sensory processing issues and hay fever symptoms!” Since I understand this possibility I can look for help specific to autistics dealing with hay fever
But it’s so much harder to do because all the results are not that, they are from people outside of autism looking in
Anyway in the end the best thing I could do was just research hay fever in general and note how my experience differed.
Turns out, hay fever isn’t usually painful or overwhelming. For most people it’s just a bunch of extra discomfort while your face does gross things. For me it’s like I have millions of minuscule needle monsters scratching the inside of my face, it dominates my entire experience and after it goes on for a while it HURTS.
None of this is helped by parents noting that their kids have more meltdowns during allergy season, or that there appears to be a link between occurrence of autism and allergies. But those seem to be all the results when I look for hay fever and autism info together.
I just wanted to know I wasn’t alone, and those are not sources I can trust. I’d rather have found something like this thread - a personal account to say “yeah this happens”
Citation needed on that last one tho, I think it’s better explained that we simply don’t adopt typical adult mannerisms as much, which isn’t the same.
Anyway I also have a few theories:
- It could be just confirmation bias!
- many of us spend less time in the sun, that is huge IMO
- plenty of us are trans, and HRT is basically ambrosia
and finally:
But looking back I recognise that wasn’t fair of me. Everyone approaches things differently, even things they’re passionate about. And I can’t fault their approach compared to mine, I burned out & dropped out in the final year. I certainly learned a lot and developed skills I still use daily, but it came at a cost that probably wasn’t worth it.
Not that I had much choice, young and no idea I was autistic I had no reason to think my energy was finite. A crash was inevitable.
Anyway yeah, learning the ways I need to be easier on myself, and also on neurotypical people. Everyone has their own struggles and ways of coping, and nobody has it all completely figured out.
Besides what does any of it matter anyway, if you’re living a good life who cares if you’re adequately pursuing your passion. Do what is right for you, be happy.
I need to back up some files, clean the dishes, and sweep the kitchen floor.
Knowing now that struggling to figure out what order to do these things in is an ND thing helps me get less frustrated about it, but it does make me wonder what magic NT people have in their head that just gives them some sequence they can follow.
It is annoying but literally anybody can cast immobilise on an autistic person by giving them more than one task and not giving them an order to do the tasks in.
Maybe that’s why we so frequently have demand avoidance and strict routines, it’s the only way we can make any kind of progress through each day.
Anyway, order decided: backup, floor, dishes
(Backup: requires computer to be on, best to do it before the room gets too hot this afternoon.
Floor: I’ll be standing on when doing the dishes, it’ll be unpleasant to stand on a crumb during.
Dishes: least urgent)
In theory I’ll never be stumped by this set of problems again, but in reality every day is different. I’m going to be stumped by this set of problems again.
(And even now I’m questioning the logic like “oh but what if I need dishes because doing the floor makes me hungry??”
Life is hell)
This morning I’m looking back at my medical history with things like “depression disorder” and thinking “it was probably just autistic meltdowns.”
then I remember that I am on antidepressants right now and don’t get super depressed even when I am burned out or having a meltdown. Medication that works is almost scary lol.
“Antidepressants? Why am I taking these? I’m not depressed!
…
oooooooh wait, I’m not depressed because I’m taking antidepressants. Got it.”
Just had my first ever dream where I went non-verbal and just switched to my AAC app for talking.
It’s super cool how quickly my mind has just gone “oh okay, cool, this is part of me and I can rely on it whenever I need to.”
Honestly I’m super grateful that I’ve been able to find my backup voice. Even though I don’t have to use it very often, having it there means I’m able to face more situations and know I’ll be okay in them.
Also, it’s fucking cool to be a cyborg that can talk through nearby machines.
Also also, I never fucked with voice training to begin with but if I feel like a change now I can just download a different voice lol
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.”
Sophie 🎲🏳️⚧️
Esme Povirk
Rob Haines