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”

(I am aware of the irony of saying this in a CW’d thread with unlisted posts. That’s not the point though. The point is autistics somewhere must have talked about this before, but I can’t find that because their voices are drowned out.)
So this morning I have been looking into how autistics apparently look young for their age (which is definitely something I’ve experienced, I’m 36 and this year is the first when I ever bought an age-restricted item without being asked for ID). There are two common explanations: we are less expressive & spend more time alone not emoting, so fewer wrinkles. Also, apparently we are more prone to childlike mannerisms.

Citation needed on that last one tho, I think it’s better explained that we simply don’t adopt typical adult mannerisms as much, which isn’t the same.

Anyway I also have a few theories:
- It could be just confirmation bias!
- many of us spend less time in the sun, that is huge IMO
- plenty of us are trans, and HRT is basically ambrosia
and finally:

- It isn’t true at all, we just hear that we look young for our age from older people - but on average so does everyone in our own generations. We genuinely are ageing slower thanks to changes in diet, hygiene, medicine, sun block, etc. if you ask a younger person how old you look they are much more likely to give you a bigger number. It’s not an autistic thing just a pattern that we are more likely to spot because… well, autism and patterns.
This evening’s thought is a little regret at being annoyed at people for not acting like I did WRT things we apparently had in common. Specifically, at uni I studied game design, and game design had been my special interest for a long time. I got really frustrated how (almost) everyone else there had no sense of urgency to learn everything they could about gamedev, it felt like nobody was taking it seriously.

But looking back I recognise that wasn’t fair of me. Everyone approaches things differently, even things they’re passionate about. And I can’t fault their approach compared to mine, I burned out & dropped out in the final year. I certainly learned a lot and developed skills I still use daily, but it came at a cost that probably wasn’t worth it.

Not that I had much choice, young and no idea I was autistic I had no reason to think my energy was finite. A crash was inevitable.

Anyway yeah, learning the ways I need to be easier on myself, and also on neurotypical people. Everyone has their own struggles and ways of coping, and nobody has it all completely figured out.

Besides what does any of it matter anyway, if you’re living a good life who cares if you’re adequately pursuing your passion. Do what is right for you, be happy.

I need to back up some files, clean the dishes, and sweep the kitchen floor.

Knowing now that struggling to figure out what order to do these things in is an ND thing helps me get less frustrated about it, but it does make me wonder what magic NT people have in their head that just gives them some sequence they can follow.

It is annoying but literally anybody can cast immobilise on an autistic person by giving them more than one task and not giving them an order to do the tasks in.

Maybe that’s why we so frequently have demand avoidance and strict routines, it’s the only way we can make any kind of progress through each day.

Anyway, order decided: backup, floor, dishes

(Backup: requires computer to be on, best to do it before the room gets too hot this afternoon.

Floor: I’ll be standing on when doing the dishes, it’ll be unpleasant to stand on a crumb during.

Dishes: least urgent)

In theory I’ll never be stumped by this set of problems again, but in reality every day is different. I’m going to be stumped by this set of problems again.

(And even now I’m questioning the logic like “oh but what if I need dishes because doing the floor makes me hungry??”

Life is hell)

This morning I’m looking back at my medical history with things like “depression disorder” and thinking “it was probably just autistic meltdowns.”

then I remember that I am on antidepressants right now and don’t get super depressed even when I am burned out or having a meltdown. Medication that works is almost scary lol.

“Antidepressants? Why am I taking these? I’m not depressed!

oooooooh wait, I’m not depressed because I’m taking antidepressants. Got it.”

Anyway yeah I’m looking at a snapshot/summary of my medical history that was included in the assessment I went through last month. I recognise most of it but some stuff I don’t remember at all, like a second tonsillectomy? And… asthma? 99.9% certain I don’t have asthma but I should probably find my full history and check what that actually was (my guess is panic attacks).

Just had my first ever dream where I went non-verbal and just switched to my AAC app for talking.

It’s super cool how quickly my mind has just gone “oh okay, cool, this is part of me and I can rely on it whenever I need to.”

Honestly I’m super grateful that I’ve been able to find my backup voice. Even though I don’t have to use it very often, having it there means I’m able to face more situations and know I’ll be okay in them.

Also, it’s fucking cool to be a cyborg that can talk through nearby machines.

Also also, I never fucked with voice training to begin with but if I feel like a change now I can just download a different voice lol

Since I've not talked about it in detail yet:

AAC is Augmented and Alternative Communication, basically any system to help people with difficulties communicating. This can be things like cards a person can display, to TTS (text-to-speech).

The AAC app I use is a TTS system that I can customise with common phrases and parts of sentences, type into for specifics, and easily display what I'm saying.

The app is super customisable, I can make my own categories and phrases in advance, colour them, give them pictures for their buttons, make the button display something different to the phrase (so I can have a button to say my address, without displaying my address in every conversation).

Link is here if you're interested, I use the android version which is free, but has some extra features if you pay: https://www.asoft.app/

Speech Assistant AAC App - Communication App for iPad and iPhone

Speech Assistant AAC for iOS is an Augmentative and Alternative Communication app for people who are speech impaired. Designed for iPad and iPhone.

Personally I don't tend to use image icons since my reading is pretty good even if I'm stressed, but I do use colours to find certain things more quickly - super helpful if you have a little color associated synesthesia
Anyway, long story short: I have a backup voice in my back pocket at all times. And surprisingly just having it makes using my primary voice easier because I don't have to stress about whether it will fail or not, less stress means less time non-verbal. 👍

(Changing meds while the seasons change)

WHAT THE FUCK ARE TIME AND TEMPERATURE!? THESE ARE COMPLETELY RANDOM PHENOMENA, THAT I REMEMBER THEM EVER MAKING SENSE IS SURELY AN ILLUSION!

Sometimes my body just decides to sleep and I have no idea when I’ll wake up or who I’ll be when I do.

Which might sound scary but mostly it’s inconvenient, I have things to do!

Something I’m learning lately is how to recognise red flags that can indicate I’m on a path to a meltdown. Tic attacks, being unable to focus for an extended period, excessive pacing. It’s useful to be able to catch so I can make changes, but it is worrying how often it all happens. Some stuff is genuinely scary though, strong dissociation especially, though not the dissociation itself…

Like, if I recognise thinking “oh I was agitated before, but I’m fine now even though I’m in the same environment. I must have acclimated, awesome.”

There is now an alarm in my head that is like “WOAH. WARNING. WE DO NOT ACCLIMATE. YOU ARE DISSOCIATING FROM THE SITUATION. YOU ARE TAKING DAMAGE WITHOUT NOTICING IT. GETOUTGETOUTGETOUT.”

Which is useful information! But also it’s scary to know you’re fucked up and getting worse and that you won’t know how bad till later.

It’s like walking around in a game with a passive toxin effect. Before I didn’t even know which areas were toxic, but now I’m seeing poison clouds through my whole life and sometimes there’s no other way but to walk through them. It explains so much of my experience before, that I was oblivious to it, but now I recognise how harmful environments are to me they are even more scary in some ways, even though I’m learning how to protect myself in them.

It’s fucked up that I get to do at most one thing per day, and how sometimes that one thing puts me out of commission for multiple days.

It is OP that some people can do multiple things in a single day. “Autism is a superpower!” Bitch you can’t say that to me when you’ve showered, done the dishes, and been to the shops all before lunch.

Also not super relevant rn but it’s on my mind: it’s fucked up that supermarkets with a quiet hour have just one hour a week and it’s at some complete dogshit time.

In theory it’s cool but honestly I think they are just picking a time when it’s not busy and deciding to save on lighting costs and paying someone to pick music.

It’s a beautiful evening, the sun is setting, its light shines through trees that blow in a gentle breeze, sending glowing dappled light into my room and FLASHING SO MUCH. I FEEL LIKE THE WHOLE UNIVERSE IS STROBING WHAT THE FUCK. THE FLOOR AND WALLS ARE WAVING?

Get the FUCK down out of the sky, sun! You’ve had your time today and I am DONE with you.

Finally watched Pixar’s Loop short, it’s really good! I especially loved the times it shows things from Renee’s view - I don’t think I’ve ever seen a camera move the way my eyes do before, focusing around whatever it is you’re actually paying attention to.

There is a meltdown in there and it’s definitely uncomfortable to watch but it feels true to me (though seems to come on much faster than I experience).

Something interesting that it made me think was “wow I wish I could communicate my needs as well as her.” which might seem weird since she is non-speaking, but also she’s so direct and honest and knows what she needs and wants. It makes me wonder if being higher masking makes it harder to understand and communicate your own experience perhaps, but also Renee is obviously a fictional character in a 10 minute short so I’m not going to think too deep on that rn. Just a thought.
Also since I’ve warmed up this thread today, something else neurospicy is I was talking to a friend recently about FF7 and realised it was one of my early special interests. I mentioned offhand the names of some minor characters that are mentioned just once (The EDK (Evil Dragon King) Valvados, and Alfred, from the gold saucer play) and that it was easy to remember since I memorised the game’s whole script when I was younger.

My friend said “How did you not realise you were autistic?” which is probably the best thing he could have said lol. Having people recognise my autistic traits and see them for what they are is actually really validating, and it’s a good question too!

The answer was because nobody explained what autism was, I was never given the opportunity to recognise it in myself. So having it recognised by myself and a friend too is super healing.

Something super shitty about meltdowns is they feel like they should be a reset. That they should just be a vent to release all the excess overload and afterward you’ll be ready to go again.

But it’s more like a whistling teakettle, you can take it off the stove and it will stop, but that water is still boiling hot, add even a little heat and it’ll go off again.

I’m starting to realise that a big contributor to getting overwhelmed is the way sensations linger, especially unpleasant ones. Touching a bad texture it feels like it is stuck to your skin even after you move away, a single bang replays in your head afterwards without losing any clarity, and even just the thought of a bad sensation can have the same effect - if I imagine a bright light I might as well have looked at one. Stuff can pile up faster than you can let it go.
Of course another big contributor is just the way I cope with all of that - dissociation from all the sensations makes it easier to get yourself through them, but you’re still taking the damage and not noticing until it’s way too late. Then everything hits all at once.

So something that I’ve felt on the periphery of some conversations with people who’ve known me for a while when I tell them about discovering my autism, is this idea that even “if” I am autistic, I shouldn’t give up on trying to be/act normal.

And after thinking about it for a while: yes I should. 36 years trying is long enough. I get to give up now. Give me a break!

I can understand that in some cases it comes from a place of genuine concern and care for me, for example when I mentioned that a lot of things that exacerbated my social anxiety were just autistic things, she worried I’d be like “oh I can just bail on all social interaction now.” and then in an emergency I’d be super helpless.

Truly understandable considering she literally housed me for years when I was agoraphobic and watched me work really hard to overcome it.

The actual outcome though is that I’m learning that I can bail on the idea that social interaction is something I should be performing in ways that don’t work for me. eg; if I can communicate without speaking, that is okay, actually. it is more comfortable for me and so long as I’m understood it doesn’t matter.

But yeah, I absolutely get to give up on trying to be normal or do things the normal way.

Also, “But you shouldn’t let it define you.” is literally the fucking worst for things that are integral to who I am. It is only ever used for things *other* people don’t want to think about or be aware of. How about I don’t let *you* define me, and then I can figure out who I actually am without the social bullshit.

All kinds of things are inescapable and define me, but I get to determine *how* they define me.

I’m not going to let someone else do it just because my definitions aren’t comfortable to “normal” people.

Sometimes I feel like autistic life is like living with a screaming child and you don’t know what it wants, but the child is you.

Today I’ve been feeling worse and worse and it got so intense I was trying a million different things and rushing around in a panic because I didn’t know what was bothering me and couldn’t cope. Then as soon as I tried my ANC headphones? The whole world was just “hi Sophie, welcome back.”

I’ve been trying to work on my self awareness so that I can tell when things are bothering me, and I’m definitely getting better at noticing there’s a problem before it gets out of hand…

But I still suck at telling just what the problem actually is unless it’s super obvious.

It’s like “great, for once I notice I’m freaking out. What the fuck am I supposed to do about that?” lol

Want to take a moment to talk about what I’m calling “pointless obstructive guilt” (which may have a name already, I don’t know) - it’s the tendency to feel guilty and locked up by things that are wrong in no way except for offending your arbitrary sense of balance. Like wanting to use your favourite cereal bowl but you don’t want the others to feel underused, or you start a puzzle with one method and see another will work better but you can’t abandon how you were doing it.

What I want to say about this is: wow that’s really annoying! Most of the time I can see it’s something that really doesn’t matter at all, I can do things in whatever way or whatever order and it will be fine.

But it won’t feel fine! And I’m torn between different options and feeling bad about it for no good reason. Who cares if I turn left a little more than I turn right in a day? Literally nobody is wronged, but I’ll feel bad anyway.

Another day when I find there is no greater cure than just taking a nap.

One of the best things about finally knowing I'm autistic is I can add "autism" to search terms that I've been stuck on for years and finally get a hit, like https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/16550/i-can-feel-electricity-in-insulated-cables---or-even-someone-s-skin-if-they-are-holding-something-plugged-in

Clearly pretty rare and I don't think I'm *quite* as sensitive as this person, but it's definitely something I experience.

I can feel electricity in insulated cables - or even someone's skin if they are holding something plugged in - Autistic adults - Home - National Autistic Society - our Community

Last week I noticed that my webcam had little flickery lines it was picking up, but I had no idea where it was coming from. Later I felt an electrical vibration in my PC case even though it wasn't plugged in. With trial and error I found that the source was from a HDMI splitter into which the PC was connected and did have power. Turn off my TV and my PC doesn't feel electricy.

Like the linked post, iPads are definitely something I notice the most, the back of an iPad can feel completely different when it is plugged in vs when it isn't. Sometimes if it has to charge and I'm not comfortable with the sensation I have to just put it down until it is done.

Sensation is stronger with movement, like I'm feeling the bumps of an EM field or something.

Also it is a little variable, don't know if it is dissociation, variations in the power grid, or both.

(Obligatory "autism is not a super power" statement.

This has been a hinderance or a bother far more often than it has ever helped anything.)

Something really scary is the times I’m in distress but I’m not aware that it is happening, and not like an “I’m unconsciously experiencing bad things and not noticing” but the complete opposite “My existence is really bad and I’m upset but I don’t have the awareness to notice I have any agency and can mitigate it.”

I spent maybe an hour pacing and ticcing, really having a bad time, getting nothing done and looping through the same thoughts before out of nowhere “oh wait… everything will get a lot better if I just put on some noise cancelling headphones and take a painkiller.”

I was really upset but not *noticing* that I was upset, or that I have other modes, I was just a ball of existential suffering that had no mind to move out of that spot.

Anyway yeah scary because… maybe someday that will stick for more than just an hour or so, that will be my life. Complete misery with no way out because I’m incapable of processing my situation, and incapable of communicating the problems because I don’t see them, they are just me. Forever.

A frog in hot water with the heat always rising. It sucks but my experience and my agency have no relation. I stay put and suffer because I forgot how to know better.

I don’t know if I’m explaining it clearly, how about this:

Picture a nightmare where you’re panicked by something that seems trivial once you wake up. As soon as you’re awake you’re like “wow the solution was simple why couldn’t I do that when I was asleep?”

It’s like that. I just have sleep-logic running the show rather than my waking-logic.

I’m experiencing the situation but I’m not experiencing enough of my own consciousness to process the situation and take agency.

Today I was getting tired and stuck on a bug, I thought it would absolutely derail me but a headmate stepped in, wrote a bunch of code and said “that should do it” then switched out. I was like “wait wait wait, don’t go, you haven’t tested it and I don’t know what you changed!”

They were like “eh, trust me, it’ll work.” And it did. I think that is pretty cool tbh but also frustrating, why can’t I be that awesome?

I mean, “I” (collective) am… but “I” (singular)? Not so much.

I try not to dwell on it too much though, teamwork makes the dream work 💪
@Sophie I both hate and love when people do that.
@Sophie Oof. This is such a mood. I think I've been trapped in some loops like this and am just realizing the hot water around me.
@Sophie yeah, the past week i've been hit hard with that kinda thing as well. almost shutdown levels 😔 and that feeling "i shoulda have noticed" burns me hard. we frequently talk about that in therapy actually, and i'm trying to come up with a kinda-routine way to self-check... probably involving trigger songs in my playlists... kinda self-hypnosis, the song comes and it's time to check-in with the aspects and see if there's maybe problem brewing 🤷 haven't started yet though, just an idea for now, because the same thing is helping me regulate better when trying to work --trigger songs for just letting go of everything else and just sway.
@Sophie I've heard of people gaining that ability after getting a ferrous metal splinter or an implanted magnet body mod before.
@Mayabotics Yeah same, my reaction at first was often "but can't you do that anyway? I guess maybe it just makes the sensation stronger."
@Sophie I honestly never even noticed that energized mains cables have a distinct feel until now, I just went around my apartment checking different cables. I always relied on my ears and the buzz of the powered device.
@Sophie What the FUCK? I thought that was normal for everyone.
@guffo turns out nope! The only time most people are sensitive to electricity is then they are actually getting shocked.
@Sophie i've begun rotating our teacups. i shift them around so that the just washed gets all the way to the back 😅
@Sophie I definitely have aspects of this. the aspect of being stuck in it sounds like perseveration

@Sophie That sounds like progress, hopefully you'll get better at the diagnosing part too.

We tend to lean on different system members for this, such as an emotional protector or someone with stronger bodily awareness.

@Sophie i guess i *really* need to get one for myself.

that screaming child part hits particularly close. i just realized a few weeks ago that one of my kernel facets is small/young, non-verbal and *really* afraid of the world. they're the facet that pushes me to just read all the time when things get overwhelming, and they are the facet that reacts the most to sensory overload. but now that we found them, *so many things* have begun falling in place and feeling righter 😊 and on an interesting twist, currently, they are the first to go to the others help when they start to overwork themselves, a kind of a reminder to know to slow down.

@Sophie This is very relatable. A couple of weeks back my usual info consumption kicked up a gear, just obsessively trying to find things to read, data to absorb like a sponge, in a way that didn't feel enjoyable like normal.

It wasn't until I took a step back that I recognised I was stressed by a number of factors outside my control, and my stress response was to siphon data en masse in case something I read turned out to be a solution to a problem I couldn't fully define.

@Sophie And it wasn't a solution, but at least I could explain to that inner upset child that it was "I'm feeling bad *despite* my coping mechanism", and not necessarily "My coping mechanism's making me feel bad".