Sophie 🎲🏳️⚧️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.
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.
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.
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!
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"
Autistic Adult Reacts to Autistic Children in ABA
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.
- 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.
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.
- 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
- 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
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.
Martijn Frazer
I’m Tired And Everything Hurts
Hempuli
ferunando