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Autism rule (midwest.social)
submitted 5 months ago by lengau@midwest.social to c/196
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[-] fushuan@lemm.ee 66 points 5 months ago* (last edited 5 months ago)

SO: my head hurts
Me: (pick any1) Where in the head? Any reason why? Did you hit something? Anything that might have caused it so we can buy some medicine or I can cook you something or whatever?
SO: idk, it just hurts, imma lie down.

SO: I'm cold, I'm gonna take a hot shower.
Me: have you tried wearing bulkier clothes? A blanket?
SO: no. takes the third shower of the day $$
Me (later that day or in another day): force them to wear more clothes and throw a blanket at them in their chair
SO: oh, this is nice uses the blanket every day now

Me: How was your day?
SO: Bad.
Me: Anything out of the ordinary that you want to share to share the pain?
SO: No, its just bad.
Me: Do you want to watch anything, eat anything special?
SO: imma lie down.

Sorry but no, i know that they aren't vague intentionally but they are not clear at all when expressing their needs.

[-] bigboig@lemmy.dbzer0.com 34 points 5 months ago

If they don't feel well, they might not want to answer comprehensive questions. Just reading that feels like an interrogation.

[-] fushuan@lemm.ee 9 points 5 months ago

Of course that it seems an interrogation of you imagine me saying all those questions one after each other. That's just how I phrased the question. The problem is that they simply used to not express their needs and wants before they got to the point where they just couldn't do it. Mind you, this was way before they started going to therapy and they are getting way better at expressing their needs and wants now so that they don't break down too often.

[-] LainTrain@lemmy.dbzer0.com 4 points 5 months ago* (last edited 5 months ago)

Nah how about y'all just explain yourselves when asked it's very easy. /s

On a serious note, I have ADHD so if you ask me "what's wrong" I could go on for hours, giving you a list of symptoms, root cause analysis, contributing historical factors, short term suggestions, future suggestions to avoid the state and bias analysis of my own analysis for hours and hours entirely off the cuff.

It's so hard with people who can't, my brain often defaults to the assumption that they are just NPCs who simply lack the level of constant self-evaluation and internal monologue (which constitutes the abstraction of soul to me) and I have to fight it. At any given time I know exactly how I feel, it's very natural to me to assume others must do as well, or their feelings just aren't as deep.

[-] pipe01@programming.dev 32 points 5 months ago

Sometimes they are too exhausted to express their emotions and it's not worth it for them, so they'd rather just deal with it on their own

[-] wreckedcarzz@lemmy.world 6 points 5 months ago

This wording bothers me. Friends / partners who think that it's "not worth it" to tell a minimal amount of detail about what is wrong/what happened so that I can possibly provide help or compassion, stabs me in the heart. I'M TRYING TO HELP YOU DUMBASS NOW TALK SHAKES THEM VIOLENTLY

[-] Catoblepas 16 points 5 months ago

It not being worth it has nothing to do with you. It’s because of how hard it can be to speak sometimes. When you’re saying “just talk to me!” you might as well be saying “just juggle on a unicycle while pedaling up a mountain!” If the person in question already knows what needs to be done or there’s no way you can help, then having a conversation with you about it just becomes one more performance they’re expected to do before being allowed to be chill in their own space.

[-] wreckedcarzz@lemmy.world 6 points 5 months ago* (last edited 5 months ago)

I dunno, I feel like this is a 'damned if you do, damned if you don't' trap. "why don't you ever support me" being at the other end, when I stop bothering you because you never want to elaborate on what's going on.

Not that I have any experience with this or anything... grumbles under my breath about exs

[-] LainTrain@lemmy.dbzer0.com 4 points 5 months ago* (last edited 5 months ago)

That's the real communication chasm, because for me - not talking is way way harder. When my S.O. isn't open with me I assume they're making a deliberate choice to withhold information to hurt me or appear strong. Either way they're excluding me from their life, which means they're ready to move on and don't love me anymore.

A state of being in which you find it harder to talk than not to talk is so alien to me it's beyond imagination anyone could exist in such a manner.

[-] Catoblepas 2 points 5 months ago

If it helps any I can try to describe what it’s like for me when I’m approaching meltdown territory and can’t speak easily:

My skin feels like it’s being electrocuted, with shocking/crawling sensations, especially in my limbs. It feels like I have to pull each thought and word out of molasses to form a coherent sentence, it’s slow and requires a lot of effort. The sound and sensation of my own voice reverberating in my head, even when I speak quietly, is so intense that I only want to use the minimum words possible. My entire body is heavily fatigued, as if I worked out very hard the day before and haven’t rested properly. That’s not even going into ‘normal’ masking stuff that also takes effort, like making sure my tone is right, using an appropriate expression, etc.

When I’m in that state the only thing that’s good for me is a dark room and a weighted blanket. After that (sometimes hours, sometimes a day or more) I’m good to talk about it… if there’s even anything to talk about! Sometimes it’s literally just “I heard too many car horns today” or something like that.

[-] LainTrain@lemmy.dbzer0.com 2 points 5 months ago
[-] Catoblepas 2 points 5 months ago

Yeah, it’s pretty unfun! Masking (trying to act non-autistic) also makes it worse for a lot of people. Fortunately I’ve learned a lot of ways I can delay or deal with sensory overload, but sometimes it’s unavoidable.

[-] MindTraveller@lemmy.ca 24 points 5 months ago

I had to teach my girlfriend to stop asking so many questions when I'm upset. We made a game out of it so she could have fun learning it.

[-] fushuan@lemm.ee 12 points 5 months ago

Sorry if I implied I asked all those questions at once. It's more of a menu where I sometimes asked one or the other. My point was that they just communicated nothing once they broke down.

Alongside teaching them not to flood you with questions when you can't deal with them, remember to communicate what you can to them before you break down so that they don't feel helpless watching you break down without even being able to help or know what's going on.

As I answered in other comments, this happened mostly before my SO got diagnosed and didn't know how to deal with it, now with therapy we both deal better with it so I don't flood them and they don't leave me out of the loop of their needs and wants.

[-] MindTraveller@lemmy.ca 11 points 5 months ago* (last edited 5 months ago)

I'm perfectly capable of solving my own problems when I'm upset, I'm just not capable of communicating unless the stakes are serious. If the problem is a person, then I can dissociate and deal with the person as a threat while neglecting my own feelings. It's toxic, but it gets the job done even when I want to go nonverbal. But I don't want to treat my girlfriend like a threat and dissociate with her. That's not right. And when she's asking questions while I'm upset, the only way to answer them is to dissociate.

[-] fushuan@lemm.ee 7 points 5 months ago

That's the thing, communicating stuff before you become upset. For example, my SO used to come from work exausted and used to lie down in the sofa, slept until night, then maybe grabbed some dinner or just slept straight until the next morning. Sometimes we didn't speak at all in 2 to 3 days because they woke up earlier than me, they then went to work in a hurry, no talking in work because work takes 200% of focus, and then come back home to their date with the sofa, and end up sleeping again before I finish my work.

Now we chat about our day at lunch even if we are not together and they vent about it whenever they can so that when they come back, I can make some time for them, and they also manage work stress way better than before so they don't come back utterly exhausted every day. Learning that they could not work in the field they were working and live to tell the tale and taking the time to change fields with my support helped a lot too. The situation mentioned above was before they were diagnosed and they just bruteforced the workday in a super toxic way for them and those around them (me).

[-] LainTrain@lemmy.dbzer0.com 2 points 5 months ago* (last edited 5 months ago)

Why not just say what's on your mind? Why disassociate instead of just chatting about it? How does disassociating deal with a thing instead of just postponing the issue until it's talked about and your feelings are therefore addressed?

[-] activ8r@sh.itjust.works 4 points 5 months ago

In those situations processing emotions, let alone finding the words to describe them, can be as difficult as imagining a new colour. It's just not going to happen and trying to get them to open up will just build frustration/anger/anguish as they are unable to mentally deal with either their emotions or the questions.

[-] MindTraveller@lemmy.ca 3 points 5 months ago

Because I'm literally on the edge of going nonverbal unless I dissociate. It's called having a disability. Autism, to be precise. I can't "just chat about it" any more than I can "just run a marathon" or "just beat up a mugger". There's people in the world who can do all three of those things, but they aren't me.

[-] LainTrain@lemmy.dbzer0.com 1 points 5 months ago

I just want to understand the mechanics of it, I'm sorry, I didn't mean to come off as telling a blind man to just see 😅

Like for example, what is non-verbal? How does that occur?

[-] MindTraveller@lemmy.ca 2 points 5 months ago* (last edited 5 months ago)

Nonverbal is when the cognitive effort required to form words into sentences is too much to bear. Conversation is effortful even for neurotypicals at the best of times. Have you ever had a thrilling 3 hour conversation about philosophy with a friend and felt exhausted afterwards? For autistic people, the baseline effort is higher, and complicating factors are worse . Which topics are a minefield? What are the other person's triggers? What idioms don't mean what they seem to mean? How much introspection do I need to do to answer a simple 'how are you'? Why does everything sound so loud? Do I have to answer questions right now? What's the answer? How do I find out???

When I'm having a meltdown, there is nothing left in the tank that I can remove without compromising my ability to do things like "exist in the presence of light bulbs" or "not be upset by the fact I have hair". I can either go to the effort of finding answers for my girlfriend when I'm exhausted, or I can just barely manage to not want to kill myself to escape the pressures of existence. Because every second of my life, the task of being okay with existing in the real world does take effort. Not much, but sometimes it's the only thing I have energy left to do. Sometimes I don't have the energy to do it.

[-] LainTrain@lemmy.dbzer0.com 1 points 5 months ago

Because every second of my life, the task of being okay with existing in the real world does take effort.

That's rough. Is it possible to change the environment in some way so it bothers you less? I don't know anything about being autistic, but I used to live in a big city, eventually I couldn't stand it anymore, homeless tents next to upmarket fashion shops, bus drivers avoiding bus stops like the plague, the endless NPC tech demo ass crowds, the costs, the grey, the awful public transport, thugs, lads, beckys, chavs, tourists etc etc. I used to feel exhausted just literally being outside, any small thing would ruin my day utterly and completely and I would retreat to sleep, dreaming of watching it burn. Now I live elsewhere, and I'm much happier overall.

[-] MindTraveller@lemmy.ca 1 points 5 months ago

It got better when I moved from the suburbs to the city, but it's never going to be perfect. I like to focus on the parts I can control. I can't make the landlord install better sound insulation in the apartment walls, that's unreasonable. It should be a reasonable ask, but it isn't. But I can control how many questions my girlfriend asks when I'm having a meltdown.

[-] hydrospanner@lemmy.world 21 points 5 months ago

Honestly I'm not on the spectrum at all (that I know of) and your SO's half of those exchanges sounds utterly exhausting.

Like, in their shoes, I'd probably just start sharing less and less about how I feel, especially when I'm not feeling well, specifically because I wouldn't want to have to play 20 questions every time until you finally gave up on the analysis.

Like, I totally get that you're just trying to help because you love them...but maybe you could simplify the process (and cut to the chase and give them some more agency) simply by saying something like "Ugh, I'm sorry you're not feeling well. Is there anything I can do for you?"

That lets them express their own thoughts/feelings/desires without having to pass a gauntlet of questions.

Again, I totally get that you mean well (I end up on your side of this exchange whenever my own SO isn't feeling well...you just want to fix it for them), but I've also learned by time and experience that often my best move is to offer help, and if the answer is just needing some time and quiet, I just tell my SO what I'll be doing nearby (but not up in their business) and if they need anything at all, just let me know and I'm happy to help.

[-] fushuan@lemm.ee 8 points 5 months ago

Is there anything I can do for you?

That's usually on the menu of stuff that I said, and before they went to therapy it had no effect. You see, autistic people usually don't express how they feel because they themselves don't even realise it, and the only realise that they feel bad when they break down. My SO had to go to therapy to learn to identify cues and to learn how to express themselves a bit so that they could vent or ask for help before breaking down.

We've been together for a while so I usually know what they need or they tell me they feel bad way before breaking down, but let me tell you, it was a struggle early on sometimes. It's hard to see someone you love struggling, but not doing anything to improve because they don't realise they are hurting before it's too late, day by day, week by week. We didn't know they were on the spectrum either early in the relationship so... yeah.

I was just taking a jab to the meme because that tale of them expressing themselves correctly is not true at all. xD The amount of stuff my SO used to describe as "thing", multiple times in the same sentence, and assume that I would understand what they meant because of the 5 mental leaps they did in their head that gave them and them only the context needed to know what those "things"s were, and since they understood that meant that I did, obviously... It was quite funny at times.

[-] PeachyMcPeachface 16 points 5 months ago

One person isn't the whole. They may just want to vent and aren't wanting solutions. While that may be frustrating to you, it can be just as frustrating to your SO to want to vent and get solutions they don't want

Of course I'm just some rando online I don't know your relationship. I have a BA in Human Communication and this is just one of the most common arguments that happens in relationships

[-] fushuan@lemm.ee 6 points 5 months ago

And that's okay, but that's not what has been described here. Being the vent ear is cool too, the point where it gets frustrating is when their vent method is to just be completely exhausted and lie down in the sofa until tomorrow when they get exhausted again and repeat... I have to force down some healthier avenues for them to vent and prepare themselves so that they don't get perma exhausted in work, it just takes some work and some guessing of what they need from my part, because they sure don't communicate when tired.

[-] Prox@lemmy.world 12 points 5 months ago

Sometimes others aren't looking to express their needs in order to find a solution to a problem... sometimes they just need to let those feelings out - they need to feel heard, and that's plenty.

[-] fushuan@lemm.ee 7 points 5 months ago

It's hard to feel heard when all you communicate is "It hurts", that doesn't really qualify and venting or letting the feelings out.

It's quite curious the amount of comments I've gotten about people telling me that they just wanting to vent, no shit. Venting usually means... talking, me putting the ear so the other person can talk and vent. I didn't summarise what they said when they complained in my comment, that was literally it.

After going to therapy they have gotten much better at expressing their complaints so that they can let out their frustrations. The thing is, autistic people have a hard time knowing how they feel, so venting is actually hard for them, that's why I was asking questions to help them identify why they felt how they felt and help them know which kind of emotions they should let out. Don't worry, if I'm going overboard they have no issue in telling me to stop now. It's been a long journey but after all this time, I usually end up telling them how they feel so they can vent because I do know them well after these years 😅.

[-] TimewornTraveler@lemm.ee 3 points 5 months ago

my god this would drive me nuts. have you ever experienced pain?? why would your want to be bombarded with questions? give em a hug and leave be jeeeeez

[-] Thevenin@beehaw.org 3 points 5 months ago

I'd argue your SO might not be displaying neurotypical behavior.

Between 50-85% of autistic spectrum people (plus a significant portion of people with PTSD or depression) experience Alexithymia, or significant difficulty in recognizing and analyzing their emotional state.

When I'm feeling bad, my SO frequently assumes I'm withholding the reason from him in some sort of passive-aggressive mindgame, and I have to remind him that I barely know what my mood is, let alone what's causing it.

I'm getting better at it, but it's a lot of work and I still regularly mistake stomachaches for anxiety.

[-] fushuan@lemm.ee 3 points 5 months ago

I wrote basically this in another comment, they had a hard time recognising their emotional state and held until bursting out. This was way before they were diagnosed though, after a lot of therapy they are much better at identifying their state, or simply they try to keep in touch a lot more so that I can be there for them before they burn out.

As the neurotypical person in the relationship, my advice is to try to keep in tough more regularly so that your SO can detect if you are halfway through burning out so that they can help you before you become completely unavailable.

My SO also has generalised anxiety and ADHD, so I usually tell them that when they keep burning out for weeks it's really painful for me because I feel very left out, which resonates a lot with them. I guess that this helps them to do the effort of keeping me up to date so that I can let them vent, hug them, ask which kind of food they would like to uplift their spirits... and all that stuff before they burn out.

this post was submitted on 27 May 2024
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