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”
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:
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.”
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/
(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!
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 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).
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.
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.
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
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.
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.
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.)
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.
@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.