tbh it's frustrating to think back to the aftermath of past meltdowns for analysis because I had nod idea what they were, so I was just trying to block them out as much as I could and just push through. Bad for me then because that is not healthy, bad for me now because it means little memory of what I was actually experiencing.
Another day of thinking "gee it sure would have been great to know sooner that I am autistic"
Behavioural approaches lack compassion *inherently*.
If your goal is only about changing behaviour then you aren't treating anything. You are bending a person until they *appear* to be what you want, with no regard to the internal effect this has.
With autism, at the very best this trains people to mask at the expense of less understanding of themselves, loss of agency, and just a fuckload of trauma.
There's a paradox of autistic people writing really long and specifically detailed messages to one another, in a world where the overlap between autism and adhd is so massive.
It's funny but it seems to work out just fine so long as the people conversing are invested in the conversation. I have a theory that this is an ancient form of encrypted communication.
Also, spoons are just cool. I learned how light bounces by looking at spoons.
Okay I know I've gone off topic so I'll stop. Just, think about it though, spoons!
Decided to skim my twitter archive to see if I ever mentioned anything autistic and YUP.
looking back I used to say I fainted or almost-fainted pretty often... past Sophie, darling, those are meltdowns.
I do think it's pretty funny that after having a meltdown I jokingly said "I was allowed to take my mask off for a minute".
I was right in a whole way I didn't realise at the time!
Okay here’s a confession: I don’t have t-Rex arms. Not for as long as I can remember. My autism is still valid tho, I swear! :p
I have surgeon arms, which makes no sense because my hands are NOT steady lol.
I don’t know if that is clear but it’s like, hands at shoulder height, slightly to the sides, palms facing the torso?
btw I know it seems like autism is all I talk about now, it's not because I'm autistic now it's because I've always been autistic and had no idea. it's a lot to process.
I also know it's cliche for a late-diagnosed autistic person to have autism become their new special interest and talk about nothing else - on that count I just don't care. You're saying I'm acting like other people for once? great! That's novel for me!
also beyond posting just being part of how I process things (I know it's not healthy but it's what I do), it's helpful for me to talk about it how I do as a way to embrace it.
Talking about the things that are difficult, cool, sad, funny, infuriating, awkward... it makes my whole life more real because I know now that my life is autistic.
In checking I also discovered my other reason for avoiding it (an aversion to anything that can change how my mind works - something that helpfully kept me from drugs, but unhelpfully kept me from antidepressants) is also a common inclination among autistic people. It seems like the main reasons many autistic people ever drink are just masking or self-medicating.
Obviously there are exceptions but I’m so glad to know I’m not alone in this, there’s so much pressure to drink!
Not sure if I’m expressing it well, but it’s like if your tongue is telling you “this food is 20% spicy 10% umami 70% savoury”
versus telling you “part of this is 80% spicy 20% umami, another part is 90% savoury 10% flavourless, another part is 14%spicy and….etcetcetc”
If you imagine that with all the added texture, heat, wet/dry sensations in the same amount of detail it seems pretty obvious why food can be overwhelming.
I think autistic people are like reverse monsters: the places you’d normally feel safe from monsters (bright, crowded) make us cranky, but put us in a dark quiet place and we’re super chill and friendly.
…or maybe all monsters are just autistic and misunderstood? Lives in the shadows and makes unnerving eye contact and repetitive twitchy movements? That’s not an SCP that’s just me!
Learned the term/identity “autigender” which is someone who feels their gender or sense of gender is inextricably linked to their autism.
And… how else is it supposed to work???? I’m so confused. The reason I finally understood my non-binaryness was because I thought about it with my autistic mind. How could my gender be anything but autigender? How could an allistic person’s gender be anything but an alligender? (Okay actually that’s a gender related to alligators…)
I guess the distinction is when your gender is something socially imposed/adopted? Like when I was living “as” a boy, then later “as” a woman, my gender expression and understanding was not wholly autigender?
But still it seems redundant, what autistic person thinks about gender even once and DOESN’T have their sense of gender tied to how they think from then on?
Okay I think a big source of my confusion about this right there in that last toot with the word “think”, there’s all kinds of ways to experience gender (or not experience it) and not all of them are thinking (probably most actually), I defaulted to a purely cognitive-based perspective but even then there are certainly ways to think about gender without your neurotype being a distinctive aspect.
Which sounds like word-salad which is part of why it’s so hard for me to see past.
For my part the way I understand my gender is absolutely influenced by my autism, but the way I experience it is perhaps not? Gender things feel right or they don’t feel right, those aspects that I claim and embrace seem inherently autigender (to me), but the senses that originate that stuff aren’t processed, they are experienced.
tbh even with helpful explanations I’m finding the concepts involved very nebulous and hard to grasp, but that’s okay.
Also now that I think about it, whenever I needed a new watch I would usually try to get the same model, and I got really upset when that wasn't an option. I was super passionate about watches and time back then, but I think it was only because it helped make sense of school's constant transitions.
These days, or even back then at home, I'd prefer to forget about time and just go at my own pace.
Thinking back to my earliest school memories, I constantly felt like I was being buffeted around and I was always asking about time to know when story time or nap time or lesson time or lunch time or play time or whenever was starting or ending.
School is constant mode-switching, I wonder if I'd have done better if each school day was just one thing?
I remember liking sports days even though I didn't particularly like sports. It makes sense now though: one mode for the whole day, more comfortable clothes, and sitting in the grass looking at the trees around school were so chilling.
I never liked the noise though, and always resented any event I had to participate in.
One of the chapters is sort of highlighting how the way we mask indicates who we are under the mask, and gives pointers to remembering the events that made us hide those parts of ourselves.
I had a moment where I was like…. “Omfg, for a moment in my life, I was super bright! I was so loud and energetic!”
And then a few minutes later, my most childlike and cheery headmate chimed in like “Yep, I did tell you!”
Changing the CW so I can talk about not-autism things in this thread like tics, such as:
I sometimes have tics that feel like I’m trying to express something but get frustrated that I’m not being understood. All I’m doing is just saying “banana” over and over, and getting frustrated I haven’t expressed it in a particular way. What way? I have no idea! This happens even when I’m alone.
Had a huge piece of tooth come loose today and getting it out was not fun (I almost fainted lol).
Anyway I realised the reason I haven't seen a dentist since I was a child is largely because of autism. To find an NHS dentist you need to be constantly calling practices and asking until they have a slot, impossible for me. But now I know I'm autistic, instead of being ashamed and just living with it, I can ask my mum for help!
In theory I could have just done that all along, but the feeling of "I'm supposed to be able to do this!" is so powerful, but accepting there are just some things you can't do and that's okay? Revolutionary.
There's a fair bit about this in Unmasking Autism actually, in a less individualistic society I'd never have even noticed this was such a struggle. I'd just have asked for help without years of stress and worry.
Just got a call about my psychological assessment, it took almost a year to get the appointment and then it was reviewed in a little over a week.
The result is, yep, I have tics and they are probably related to my autism somehow. The recommendation is mostly that I ought to reach out to autistic orgs and talk to them about it.
Which, I guess is good? It’s probably not something more serious that I need to worry about.
But also, I think I’m pretty upset about it? Mostly because part of me was hoping there would just be something causing the tics that could be outright fixed.
I have found since I figured out I’m autistic and embraced stim regulation I’ve ticced less in private… but… tbh I hate that I tic. Hate it. And now I just have to face that I’ll have to live with it.
And I’ll probably never know why my tics became so much more prominent over just a few months, I have theories but now I know that certainty is not an option.
I guess I should have seen this coming tbh, I’ve done a lot of research myself and didn’t find any concrete answers, but I’d still hoped someone else could give me that.
Another one I saw in a compilation that made me go !!!!!!!
Discovering sensory sensitivities later in life can absolutely feel like an infohazzard! I am leaning towards thinking it is better to know and I get to feel more real and be able to solve some of the problems I now recognise, but also it can be super overpowering still
https://vm.tiktok.com/ZGJxaP4xN/
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.
@guffo yeah there are definitely times it makes me laugh (because it can be funny, not just because I sometimes get a laughing tic lol), and I think I've gotten comfortable(ish) being someone who tics, I just thought maybe I'd someday be someone that doesn't. It's great when they are amusing but it doesn't help when they are painful or tiring, sometimes they just suck.
I'll be okay, it's just a dose of reality I wasn't quite ready for. Thanks for the input though, it helped.
@Sophie I've come up against the same frustrating non-answers, after looking into tics for different reasons. There's a lot my intuition is pinging off, but can't quite make into something. Mainly:
- People with Tourette's describe tics come on like a laugh or sneeze, & trying suppress as exactly like that
- What would cause a normally volitional action to acquire that pressure, possibly to the point it gets rammed straight through action selection like [trigger:reflex]?
@nach all of that describes my tics pretty well so I'd be happy to talk about it if it might help.
As for "volitional action" I think people do a lot more on autopilot than they realise, so tics can feel like random procedures in your head getting supercharged until they have to happen.
@Sophie Thank you, I might take you up on that at some point but I'm not certain what my questions would be right now.
And on "volition", absolutely. "intentionality" might be a better word. I've spent a lot of time reading and thinking on ways brains can automate and compartmentalise stuff, and eventually realised it's not a free-will/determinism dichotomy, but might be a gradient produced by how much actions involve attention
@Sophie for me, after what i began calling "the meltdown that unmasked me", a lot of things irreversibly changed. it was such enormous --traumatic? brutal?-- change, that my bodymind just disconnected itself for a couple days, and when it started reassembling, some connections reformed in bad places and i did not have the tools then to try and move them to less hurtful locations. in particular, my compulsion to read/listen/play stories got activated to such a degree that, if i'm honest, i have to call it as disabling.
learning my stims and regulating mechanisms; trying to be patient and compassionate with my overworked aspects... these have been hard, but now, one year after the thing and 8 months after selfdx, i've just began to notice shifts in my capacity to notice and take control back from the runaway stuff and... yeah, while i still can't control the *onset*, the sprees have been getting less intense --average-- and i believe it'll continue to be so. and less tiring as well
💜🫂