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. :/

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.

Like, there is a whole process of diagnosing when you’re a kid and you say “I don’t feel good”, and some stuff will be recognised and categorised (a headache, a poorly tummy, a scratch, etc, maybe even feeling sad), but if some things are just “overreacting” or “just imagination” then you learn to disregard those feelings yourself too, even though they are still happening they aren’t “real”.

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.

I think it’s common for autistic folks to really appreciate things where the protocols are clear and we can excel at performing them, but also that a single experience where things go off-script can ruin it for a loooong time afterwards. There’s safety in a reliable procedure, and finding yourself lost in that is a loss of safety, it’s really scary!
Just had my first time at a checkout being non-verbal whilst actually understanding that I was non-verbal. That alone made it so much less stressful. I was still able to communicate what I needed with a couple of gestures, and was able to smile so I don’t think the other person thought I was being rude. Muuuuuch preferable to forcing myself to choke out some words/grunts and be upset at myself, making everyone else think I’m mean and grumpy.
So angry at the way autism topics are dominated by allistic people. I’m glad that parents of autistic kids are able to talk about an issue, I’m glad that there is research looking into a connection between autism and that issue, but when I need help understanding or coping with it myself none of this is helpful to me. That this is 100% of search results is so frustrating and a waste of my time when I need help.

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”

@Sophie yeah... that's my love/hate relationship with being a barista.

LOVE: following the social protocols, making nice drinks for nice people, keeping the machines running nice and clean and the things on their places.

HATE: sudden new drinks from HQ, customers that enjoy shows of power or that want to keep talking with me while i make their drinks 😅

@Sophie yeah.. reconnecting the bodymind and stopping disregarding things because "that's how it's supposed to be" have been the hardest things to me so far.

@Sophie This really annoyed me too. I think flipping the Silent switch on turns off the tinkly noise, but I guess that switch doesn’t exist on iPads?

I don’t like my devices making noise at all. I feel you. 😕

@samir oh just found that the iPad does have a silent mode! Hadn’t even considered it could be a thing separate from volume so thanks!
@samir (update: no sounds! Not even the tippy tappy keyboard! This is great rn!)

@Sophie I just realised how much I want a software-based silent switch on the iPhone so I never accidentally hit it again, and now I am sad about it.

They can get rid of a headphone jack but this switch still plagues my existence. At least let me decide what it does!

@Sophie I had a similar thing with certain UI sound effects in Anno 2070... I just thought that it was bad sound design, but it was remarkably similar to what you've described here. Not painful as such, but definitely an unpleasant feeling.