I figured that since I knew myself better and could find tools to regulate myself better with stims and a more curated/mindful sensory experience I could just avoid being disabled by this kind of thing… I think that was probably naive.

This stuff absolutely helps and I think without it, this would have happened much sooner and more severely, but even under perfect circumstances I guess sometimes my system will decide to fuck me over.

CW: I’m going to describe the meltdown in this post.

There was a build-up to it, I tried everything I could to balance myself out through the day but I kept getting overstimulated, unfocused, agitated, ticcing more and more and eventually it just reached a point where I was rocking on the floor, yelling fuck over and over as a tic until my voice was hoarse and sore. It was exhausting. And now everything feels pretty raw, like a healing rash getting caught on something rough.

tbh I have felt overwhelmed for about a week, maybe a bit more. I’ve tried to take it easy in the hopes that all the stress could vent before something happened but I kept pushing myself “oh I feel pretty good rn, I’ll do work”. Next time I keep resting for a bit even after feeling better.
Something that is uniquely frustrating is I think it was worse than it would have been if I hadn’t found out I was autistic. Because now when this stuff happens, I understand why - so I’m much more aware of sensory overload, a side-effect of which is I am noticing my senses way more and just getting even more overwhelmed by them.

As an example, yesterday I was walking home from the supermarket and basically feeling this meltdown coming on, I was trying to control my breathing and dodge a panic attack. Big slow breaths.

But that just meant I could smell and taste the air so much more, and I walked past a bus stop where people dump their litter behind the wall and my whole world was just a panic attack and that sensation. It sucks!

Anyway I’ve been trying to get my tics checked out for almost a year now and I finally have an appointment. I’m starting to realise that this is all probably closely tied to that so hopefully they’ll be able to help. We’ll see I suppose.
Feeling so much better today, though still very wiped out. I wonder if meltdowns are like when you finish vomiting and you feel super gross but cleansed and fresh at the same time? I'm noticing that all my senses feel recalibrated. Still picking up lots of detail but not quite as noisy? Maybe they are just dulled tho, like touching old scar tissue. Big headache tho, still need rest.

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"

Watched this and got A LOT of memories/feelings. I've been meaning to do more research on ABA for a while because I often hear it compared to dog training and I distinctly remember my dad saying that raising kids is "just like training a dog". Anyway if you take nothing else from this thread then take this: ABA is evil. https://youtu.be/8MndJ1PJnsk
Autistic Adult Reacts to Autistic Children in ABA

YouTube
I remember learning about behavioural approaches to psychology when doing my A-levels and even in that most basic intro we were taught that it can be effective at altering behaviour but that the whole approach is blind to a person's internal experience by its very nature. And given that people demonstrably have an internal experience this is a pretty fucking big flaw for a psychological model to have!

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.

Anyway, I never went to anything that was explicitly ABA that I can recall, but so much of that last linked video was relatable. In particular being moved, denied stims, forced to be present at the supermarket, and I even remember lying down on the cool supermarket floor when it was too much (and getting yanked back up by my arm).
If you're wondering what kind of effect that has on a person, the whole of this thread above is right there but the tldr: it's not good.

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.

Oh another autistic thought I had last night was about spoons. Spoons are significant in a mysterious way that is somehow very relevant to my mind:
- Spoon theory goes without saying of course
- I have a "There is no spoon" tic
- It's a meme that autistic people have a favourite spoon that is smaller than the large one (tbh this just makes sense)
- as a teenager, I had a single teaspoon that I would polish obsessively for years. My shiny spoon. No idea why. But it was shiny.
The infinity symbol is great but I feel a spoon would also make for a good autism symbol if we ever need another. 🥄

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!

I can’t find the original TikTok but just this sentence alone is so perfect I don’t need to.

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?

I feel like such a fucking idiot for struggling with sensory issues rn. I went years without noticing it and now so many things are just more overwhelming (or at least, I’m finally noticing that they are the things that are overwhelming me). Now I’m freaking out over dishes or clothes or the shower in ways I haven’t since I was a child. It’s like my ability to exist took a huge hit, even though the only thing that has changed is my level of dissociation.
It’s like the whole world is made of needles and knives, everyone said “grow thicker skin” and I thought I did, but I look down and my skin isn’t thick it’s completely shredded.

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.

!!!!!! Realised that my dislike of alcohol is totally an autistic/sensory thing! I looked it up and plenty of autistic people find the taste of alcohol overpowering no matter what it is in. I always used to comment on it, people were like “you can’t taste the alcohol itself” my reaction was always “????? I definitely can though! Why can’t you!”

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!

Anyway lately I am thinking quite a bit about complex flavours and how people experience them. It’s common for autistic people to not want their foods mixed in certain ways because it can be overwhelming. I wonder if everyone has the same sensory experience but just has different tolerances or if some people sense things in distinctly different ways. Given that many people can’t distinguish the taste of alcohol in a drink I’m inclined to the latter.

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.

Not necessarily applicable to alcohol (I assume?) but another aspect of food/taste sensitivity is reliability. Is this food going to taste how you remember or is it going to be an overwhelming new sensation. I know myself and others have had a single slightly unpleasant experience with a type of food then avoided it for decades.
I’ve seen a few jokes along the lines of “autistic person is really angry, but then someone turns off a light and they are fine.” and it’s turning out to be annoyingly true lol. Every time I catch myself in a weird mood or unable to focus, I now check my surroundings for things that might be overstimulating me and sure enough I can *usually* do something simple that makes it much better.
I always thought my moods were unpredictable, just this random ride that I was stuck on and had to deal with. It turns all these decades I could have had better days by just closing some blinds, dimming a screen, closing a window, changing clothes, posture, music, etc. It seems usually it’s just one or two things grating against the vibe I want.

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.

Thinking about how I learned to read time pretty early and was constantly aware of it, because it made all the stressful changes through the day more predictable and I could better prepare. I only ever got shocked by a school bell if I became focused on something other than the time, otherwise I had a constant need to check the clock every couple of minutes. I compared my watch to clocks to be certain I knew the right time at every moment.

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.

I’ve been making my way through the unmasking autism audiobook and I swear several times each chapter I’m like 🤔🤯😭😖😤

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!”

I’m guessing that the interaction between plurality and masking won’t be covered in the book, buuuuuuuuut I feel pretty sure there’s some overlap there. Especially since the genesis of some headmates was a deliberate “okay I’m not like this but I see now I absolutely need to be like this”

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.

Accommodations I have made for myself since realising that I'm autistic that have helped a lot:
- Going easy on myself if I need several days off
- Allowing myself to stim and appear unfocused in public
- noise-cancelling headphones
- hat with a brim on bright days
- allowing myself to rock my body again
- not feeling I have to put down a fidget toy if I've been using it for "too long"
- asking for help, or sometimes just a moment to process or find my voice
- cutting my hair short
- removing labels and/or wearing more clothes seams-out
- tying just my fringe/bangs up if they are bothering my face/eyes
- generally not shaming myself for stuff I "should" be able to do (yes there is a pile of dishes, but it's only an inconvenience and not a moral failing)
- turning off noisy things when I don't need them, eg the extractor fan in the bathroom doesn't need to be on until I have left
I know most of these seem minor but I think autistic or not everyone should be able to try out a variety of different things and see what works for them, without worrying if they are how things "should" be done.
(I understand there is a worry of appropriating things that seem like they are for a specific disability, but I think that for the most part things that make your life better are allowed, and normalising accessibility is cool. Use fidget toys, chewelry etc if it helps, or even just if it is fun lol. Just be careful not to do stuff that might get them banned in schools or wherever.)

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/

goblinodds on TikTok

i really want to do a comparison of how my bf perceives things vs how i perceive things#autistiktok #actuallyautistic #sensoryprocessingissues

TikTok

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.

Thankfully another headmate who is better at dissociating from the sensations stepped in and finished up the shower. We've got a nice clean body again, but it's going to take guts the next time we need to do that and there's not much we can do to mitigate it.

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.

I think *if* I’m going to go looking for community beyond just, y’all (who I love!), I’m going to need to look online. Clearly the organisations around me are not okay, and there’s no way I have the capability to try starting something myself. :/
@Sophie If it helps, mine have got worse in recent years. Or maybe I'm just noticing it more now.
@guffo it does help to know it's not just me, thank you. Though I think I still need to mourn the idea of some version of myself without tics.
@Sophie Honestly, I've kind of embraced it a bit. My wife finds it funny anyway!

@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]?

@Sophie (also, that apparently many people who tic report that the tics become more frequent and severe when they're tired or stressed)

@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.

@nach and I think this is partly related to how some tics happen over and over, some come and go. They are almost like habits, the more within reach the idea of doing something is, the more of a candidate for becoming an urge. (part of why tics are often rude/unpleasant, minds can dwell on worries, and those can become tics)

@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

💜🫂

@Sophie Also in reverse tbh: never do things without a good reason. If you don't know why you're doing a thing: don't do it!
@Sophie I often just tell people I'm a bit deaf if I need extra time to process whatever the fuck they just said. I wish I could just say, "Sorry, autistic with audio processing issues. Can you give me a sec and then try again?"
@guffo I don't think I could say that myself, but I am getting pretty comfortable not giving a reason, just "um ... sorry, (pause for as long as I need) ... I'm not sure what you said" I don't think most people care why, if they have something to express they are probably more focused on that
@Sophie "particular way" in terms of enunciation/tone/other auditive details, or in some more abstract/ambiguous way?
@Hempuli it’s super indistinct, because I’m basically saying it the same way over and over, waiting for a feeling of being understood. Sometimes the best way to stop is to tell myself “okay yeah that makes sense actually.”
@Sophie Right, so it's more like a dreamlike quality of waiting for a signal formatted in a specific-but-unknown/vague way? A bit like how in dreams you can have absolute knowledge about the nature of thing X just as an implicit feeling that's somehow true by the dream's logic?
@Hempuli oh yes it’s exactly like that! Dreamlike knowing is exactly it!
@Sophie me and my therapist talked about, and it looks like the overlap is kinda big actually. we are *so* good at dissociation that the constant need to wear some particular mask just spins itself up on its own thing so we don't need to think about it all the time.