But seriously though, NT folks you could make this (and many other things) easier by cutting out some of your shit like normalising "oh, everybody lies". No. Not everybody lies. You shouldn't lie. Please I'm trying to argue that you're not inherently evil, help me out with this.
“Sensory seeking” vs “sensory avoidant” is such a bullshit perspective. Everyone avoids subjectively bad sensory experiences and seeks subjectively good ones. You’re just running a bunch of confirmation bias and picking seeking/avoidant based on which behaviours you notice being sought/avoided!
Personally I don’t think there is any particular kind of sense I am consistently seeking to stimulate or consistently avoiding stimulation for. It all depends on the type of input, and sometimes even my mood. Sudden loud sounds freak me out, but make it rhythmic and I’ve got a new jam. I love spicy food, but give it a complex texture and I will gag. Being wrapped up in blankets is awesome, a single stray hair on my face is torture.
I know some folks have an attachment to these terms and find them helpful. That’s cool, but to me they reek of “I have been observing the behaviours of these strange autistic beings and have presented my findings for debate amongst us, the people with normal brains.”
Ooooooooooooh
Autism is the explanation for why people called me “psycho” at school. Honestly that had confused me for literal decades. Whenever I asked people why they said it they just said “because you’re like a psycho”, which is not very useful feedback lol.
Anyway I’m pretty sure it wasn’t ever meant in an especially malicious way, more of a “friends poking at friends” kind of way…
Wait… that is a way, right?
Ugh now I don’t know. I’m sure I’ve tried to show affection by emulating that kind of thing and roasting people I care about, then getting admonished for it. So I got out of the habit, but maybe it’s just… not a thing friends do? I feel like it is but I guess maybe it depends on the friends? Or there is some context that is supposed to exist that I miss…
Anyway just to clarify that I recognise people use “psycho” as an insult, I don’t have an issue with psychopathy tbh. for a while when I was so deep in dissociation and apathy I thought it might apply to me.
Most of the things I love can’t love me back either, it’s fine if they don’t care about me so long as they don’t hurt me.
So I thought I’d download an AAC app just to have in case I became super non-verbal and needed it in a pinch, but…
It’s fucking amazing. Just by having it I feel like the pressure to *be* verbal is so much less. This kind of tool is so fucking empowering I wish I knew I could have this sooner!
tbh for a looooooooong time I’ve thought about how I’d much prefer it if I never had to speak *at all*, or at least only with people I was super close with. But I always thought it would be kind of gross and appropriative or something because there’s people who *can’t* ever speak… but I’m starting to realise that this thinking is not great. If I need a break I can get a break, I don’t owe anybody my voice, and if this helps then it helps.
The more I think about it I don’t understand why I was so hesitant. I use subtitles, handrails, benches, and all kinds of other things that help make the world a little more accessible. I could probably manage without them, but not nearly as well.
Life isn’t supposed to be inherently challenging! So long as I’m not hogging resources that others need more then all this stuff is fine.
Something I've been thinking about lately is what my mask actually is/has been. It's a little difficult to untangle (especially with plurality thrown into the mix) but my main thought lately is that I wasn't masking very much (or very well, lol) and I think the main reason for that is just that for the most part I was allowed to be a weirdo loner with funny interests.
I definitely had to perform as a person that was not me sometimes, but I sort of always understood that that wasn't actually *me*, that was just the "mode" of me that I was around other people - so I just kind of avoided other people and for the most part (some very stressful exceptions exist) I was permitted that.
Like I say, plurality obviously plays a part of this. I used to say that when it came to social situations I could (sometimes) switch into an "autopilot" mode that was a super social active listener but that as soon as the mode switched off I'd be super stressed and exhausted. That is like, super common with autism and with this kind of dissociation (especially if you add in the memory issues of having no idea what I or anyone else said).
But I feel like, this aspect of myself wasn't hidden. Even in a social situation I could explain this kind of trait. There was no secret about it.
So like, was the mask just that I (and everyone else) was oblivious about autism? Or maybe the mask was society hiding my autism from me rather than the other way around?
I watched a video recently about how one part of masking is unconsciously making accomodations for ourselves that we don't realise are necessary because of our autism. Like, I live in a town where I literally know not one other person, I live alone, I am self-employed, I work from home, I work with my special interests. All this stuff is great for me and I did it without noticing my own autism.
I guess this is like, a "good" part of masking? the way we can slide into the persona that is the best overlap (or closest point) between our true selves and what society expects of us. I think if I knew I was autistic from the start, I'd still have found my way here, it would have just been easier for me.
anyway I guess all of this is to say that even though nobody ever indicated I could be autistic and I didn't find out until now, I can't possibly call myself "high masking". It's so fucking obvious that I'm autistic if you even remotely know what to look for. Even my social autopilot persona was not great (maybe lack of practice?)
So whilst I was writing these posts just now I got an unexpected phone call and caught myself stuttering, going non verbal, not being able to process - I asked for a moment just to gather myself. Something I'd never have done before, and it helped SO MUCH. Knowing what accomodations you need and being able to advocate for them makes a huge difference. So glad I know myself better!
I've been wearing a fabric chewelry bracelet for a few days, and it's actually pretty comforting. I can fidget with the tie, and bite on it without worrying about ruining my clothes (or skin).
I was sort of expecting more tbh, like some big positive change... but really it's just a nice thing to have. Not some treat or a luxury. It's neat, it helps, that's all.
Saw this in a compilation and YES. Holy shit it is so frustrating. Literally the only group related to autism near me is a bunch of autism mums with puzzle pieces plastered over all their shit. My mum didn't know about autism but still generally found ways to accommodate me, you fucking KNOW and you're not even listening to autistic people????
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I was just looking to see if maybe there was a social thing in my town I might be able to tolerate. In this group's defense there is one autistic person in it who apparently organises a game night or something.... but do I want to deal with all of that associated crap or feel like I'm giving my endorsement? Absolutely not. It's exactly like the tiktok said - you go looking for something to help and then you have to recoil because it's not okay.
It's really frustrating because SO MUCH autism information and resources are by allistic people for allistic parents. And I get it, they often need help to support their child, it's great if they seek that out and genuinely support their kid.
But kids grow up! There's so much "I speak for them!" advocacy that ignores and speaks OVER people who can speak for themselves.
It's incredibly frustrating that I have to be wary of so many spaces if I can't see acceptance of late-diagnosed people (or even "Aspergers"), because they are likely to prioritise allistic voices in conversations about autism.
Revisiting an earlier thought in the thread about whether I see my autism as a disability…
Today I had my first serious meltdown since realising I’m autistic. It was pretty mild compared to some I remember but it absolutely fucked me up for the day (at the very least). And I don’t think anything could have been done to stop it. So yeah I am changing my thinking on this.
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
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. 🥄
@Sophie do you mean because of Spoon Theory? i’m not sure that would be appropriate if so; it was originally created to describe leprosy & chronic pain, and members of that community have expressed some dismay at appropriating it in other contexts
Sophie 🎲🏳️⚧️
chris martens