modern day cassandra

pheonix / he/it / dysautonomia + HSD + other mysterious undiagnosed things + psychotic + traumatized + plural + autistic in the DD way / antipsych and cripplepunk sideblog

[chronicbitchsyndrome]

just gonna go ahead and make a pinned now so it’s not a problem later.

name’s nix or jinx. i’m a pissed-off autistic psychotic cripple cockroach dyke in a traumagenic plural system. we don’t have DID or OSDD, don’t be a dick about it. this is A Sideblog so don't expect much activity.

general vibes around here

anti-psychiatry

cripplepunk

anarchism

prison and school abolition

radical freedom of expression

radical self-determination

anti-censorship

pro-weird, pro-kinky, pro-freak, pro-contradicting-identity-labels, pro-gutters-of-society, pro-speaking-in-tongues, pro-self-induced-visions

if you’re not down to clown with an absolute fucking freak who kins the gutterotica manifesto, don’t follow.

air filtration makes spaces more accessible than masking does, ask me how! (or read this ask where i give a quick-and-dirty rundown.)

other system members sometimes post on this blog, we don’t really tag names much, sorry for the confusion but we’re just as confused as you are.

if i’m psychoticposting, you’re welcome <3

[bebsi-cola]

happy disability pride to unemployed and unemployable people only

[librarycards]

the thing about talking to people about psychiatric abuse is that you quickly learn that there are dozens and dozens of ppl around you who experienced unspeakable trauma at the hands of the psych industry in all its iterations and we just walk through the world inundated by messages re: carceral 'recovery' and 'healing' and 'wellness' silent and sucking ourselves in & choking back the memory of what we endured and feeling as though we're alone, truly alone, lacking even the last names of the people we suffered alongside, but we're literally everywhere, all we need to do is reach out and touch each other

[shamebats]

The whole concept of migraine triggers is just perfectly suited for making disabled people who are already suffering waste time & energy obsessing over every single thing they do every day, especially their diets, and to then blame themselves for their attack like their problem is a lack of discipline & willpower and not the fact that they have a chronic illness. If you get migraines, that isn't because your lifestyle & diet isn't sufficiently optimized, it's because you have a migraine disorder.

[shamebats]

My neurologist didn't waste any time trying to get me to identify triggers and just got me on the right meds as soon as she could and I'm so glad she never made me feel like it was somehow my fault.

I'm now finally on a preventative that works for me & I literally don't do anything differently but I went from having daily migraines to sometimes not having a single one for over a week. I could do & consume every supposed trigger & still not get a migraine, when before the medication, I could do everything "right" every day for a week & still get a migraine every single day.

It's always like it's a medical disorder that causes your body to react badly to certain normal daily things & the goal should be to make it do that less, not to find ways to totally avoid all those normal daily things.

[shamebats]

Yeah...they're caused by migraine disorders. Because people without them don't get migraines on a regular basis.

The chocolate advice is probably bullshit too. Unless you specifically identify it as something that makes your migraines worse (unlikely), it's way more likely to just be a common craving people have during the prodrome phase before the pain starts. If it's your body signaling you that it wants chocolate, there's no reason not to eat it.

Also, my neurologist said if you take triptans, take them during the headache phase immediately when it starts, not during the aura.

[shamebats]

This isn't just my opinion btw, it's the current state of migraine research that shows that a) evidence for the belief that specific foods can trigger an entire migraine in someone who would've otherwise not had it is just not there and b) people are prone to misidentifying "triggers" and c) some "common triggers" have been shown in research to have protective qualities against migraines in some people and finally, d) the most up to date approach is to, instead of chasing possible triggers, raise your migraine threshold, which for some people can be achieved only with medication, but stuff like exercise & a nutritious diet could possibly also help you become more resistant too, once your threshold has been raised enough that you have the spoons for it, that is.

The Science Behind Migraine Triggers: Are Migraine Triggers Real or Part of the Prodrome Phase? | American Migraine Foundation

Learn more about how “triggers” may actually be signs of migraine prodrome and why identifying migraine triggers is not always easy.

Sometimes when people attempt to carefully track and avoid all their triggers, it creates a sense of guilt. When we think about it this way, the burden is on the person with migraine to avoid their triggers, and people may feel that if they experience an attack, it’s because of their own behavior. “Many times it is just the disease,” says Dr. Halker Singh. “This is the unpredictable nature of migraine. I think we carry enough on our shoulders as it is without the added stigma or guilt [around triggers].” Instead, we can shift to a healthier conversation about awareness in migraine management by learning to recognize prodrome symptoms and early signs of a migraine attack. This puts the focus on a deeper, more personalized understanding of each individual’s own unique experience with migraine. “I think making that shift is a little bit freeing and allows us to separate ourselves from migraine,” says Dr. Halker Singh. “My personal relationship with my migraine changes a little bit—I can separate from my own guilt and say, ‘OK, this is happening, what can I do about it?’” This kind of shift enables someone with migraine to focus more on self-care and addressing what their body needs in the moment during an attack.

The Migraine Trigger Myth: Why We're Often Wrong About What Causes Our – Cerebral Torque

New research reveals that 82% of suspected migraine triggers may be false. Learn how science is challenging traditional beliefs about migrai

Diet and Headache Control | American Migraine Foundation

Your diet can sometimes impact your migraine. Learn which foods are suspected triggers and how to adjust what you eat to help prevent or rel

One study compared headache activity between two groups of people living with migraine while they followed different diets. One diet eliminated foods commonly thought to trigger migraine attacks, and the other diet required patients to eat those same foods. Interestingly, headache frequency improved on both diets. This suggests that particular foods are not likely to trigger an attack, but rather that following a consistent, healthy diet may itself be therapeutic. In other words, feeling that you have control over your headaches may improve your headache symptoms. It also suggests that no single food is a trigger for all people living with migraine.

[shamebats]

There's lots of people in the tags going well my dad's uncles grandma cut X out of her diet & it cured her migraines.

If you're a chronic migraine haver please please learn to ignore all of that. There's always going to be people claiming that doing keto/paleo/gluten-free or cutting out seed oils/sugar/MSG and taking 15 different supplements cured their chronic illness and migraine is much the same. I'm not saying they're lying, they can absolutely believe that's what happened but it doesn't mean any of that is going to work for you nor do you have to try it.

[shamebats]

I had some of my worst most painful headaches while on strong painkillers, at the hospital, eating only bland low sodium vegan hospital food and getting fluids straight into my veins because apparently, the stress of surgery & recovery made my migraine disorder worse. Despite me being on Emgality. That's just what being chronically ill is like sometimes, there's not much you can do. Some of us can't self-optimize ourselves out of it, despite what every armchair neurologist & dietitian seems to think.

[shamebats]

Sometimes the stress of constant headaches & migraines is what's causing your migraines because it's an evil disorder.

[rotationalsymmetry]

In honor of disability pride month, shout out to the local anarchist group who have been installing actual benches at bus stops.

[80hdguy]

I am high as balls right now and I cannot stop laughing at this oh my god

[firewalkwithmedvd]

man if you're disabled you've GOT to find some way to make your fuckass body a source of pleasure whenever you can. jacking off. eating good food. wearing soft clothes. kissing an animal on the head. whatever you can do

[copperbadge]

Maybe now is a good time for a summer psa about adderall increasing your sensitivity to heat!

....which I forgot about completely before blithely going out in it yesterday to walk to a doctor's appointment and then had to like, sit down with my head between my knees when I got there. I was fully hydrated, had a water bottle with me, wore a hat, walked in the shade, and still by four blocks I was feeling Unwell. It's been ungodly hot out, admittedly, but I have felt more sensitive to it this summer than previous summers and now PERHAPS I KNOW WHY. (My dose was raised over the winter.)

Remember kids: check your meds to see if they make you sensitive to heat, cold, or sun -- and heat and sun are different sensitivities, though of course they can be relational when, say, your Adderall reduces your thirst impulses and you go out in the sun already dehydrated. Know the symptoms of heatstroke -- flushed skin, rapid breathing or heart rate, lack of sweating, disorientation, nausea. Get somewhere cool, get help, and get wet!

[localfaecryptid]

[ganymedesclock]

I think there's something weirdly funny about the way we talk about disabilities and their limits in terms of what kind of maltreatment we expect to 'get away with' in terms of people.

Like almost every time someone tries to explain what autism is the go-to is "they hate disruptions to their routines" and I'm like. okay. I think if you made a bunch of allistic people wake up outside of their usual schedule at short notice, most of them would be annoyed with you.

Sure, there is a distinction with autism, but at least from inside my own head that distinction feels a lot less like some kind of mysterious pattern-obsession and a lot more that by default, most things are moderately to significantly stressful. I think even Certified Neurotypicals can understand full well if I say, "you know when you're tired and cranky because you've had a really bad day and that one person next to you won't stop clicking their pen really loudly? And maybe pens don't bother you even then but someone smacking their mouth or the tag on your shirt, there's something that gets to you more if you're stressed, everybody has one."

If you're autistic that's just liable to happen a little more often because you're by default usually more stressed. because a bunch of other little things chipped away your tolerance levels.

I guess it's frustrating to hear something described as a head-shaking, apologetic, yeah this person is so flawed because they hate surprises, because I think the assumption most people can just have their schedule and comfort fucked with because they won't dissolve into screaming about it implies some really unkind things about what we assume is okay to do to people. Like you don't have to offer every change of plans on a velvet cushion, but regardless of having a shiny pathological identifier on it, I think most people want to feel informed and prewarned what to expect. Framing this as a special thing wrong with autistic people just means most people, autistic and allistic alike, are getting some degree of hazed with the assumption that "Real, Normal people" love unpleasant surprises when the most high-stress EMT responder isn't 'enjoying' the unpleasant surprises just because they're good at rolling with them.

[valtsv]

my that one friend that's too woke opinion is that in a similar vein to how you almost never see fat people or women without makeup on tv you never really see anyone experiencing incontinence issues unless it's a humiliating comedic moment at their expense and that's kind of scary

[valtsv]

like sorry to be the bearer of bad news but people piss themselves. when they're afraid. when they've experienced mental and/or physical trauma and their body needs a way to express that stress. when they've been sexually assaulted. when they get older and their muscles start to wear out from a lifetime of service. a not insignificant majority of people Will experience incontinence in their lifetimes and while there are steps you can take to manage it for your own comfort and others', there's simply no moral dimension to it whatsoever. & like i'm not saying every show and movie needs checkhov's bed wetting scene but we have seriously got to get more okay with acknowledging that somehow.

[valtsv]

[bebsi-cola]

when you treat being disabled primarily as an identity over being a class then you get this sort of misunderstanding that happens when disabled people disagree with each other. because the disabled identity is supposed to give credence to their opinions; how "true" their opinion is becomes irrevocably linked to how legitimate their experiences are as a disabled person, and thus their validity as a disabled individual. so dismissing their viewpoint on a disability issue - maybe because they have only based it on their own experiences, or are talking about a disability they don't experience, or for any other reason - is seen as if you are saying that "you're not a real disabled person actually." so you get people angrily replying by listing out every difficulty and grievance they have ever faced in a bid to prove that their experiences are legitimate enough to qualify them as being disabled. this unfortunately misses the point - you can be disabled and still be wrong about disability or other disabled people - and instead comes across as some sort of suffering contest. which, in of itself, is gauche, but which also created the unspoken expectation that every disabled person who doesn't detail their struggles in intimate detail are somehow lying or not experiencing any such troubles. which is simply not true. disabled people on the whole are already fighting to keep their privacy intact from invasive questions and rude, entitled strangers and it doesn't do anything good to contribute to eroding that privacy

[insidestory1]

Autistic social anxiety is not "social anxiety" in the typical sense. An anxiety disorder is defined as an "irrational fear". So for example, imagine someone who is afraid to speak in case everyone looks at them and goes "what the heck are you saying you wierdo." If that person is neurotypical, then the chances are that they're very unlikely to get that response. Therefore their fears are irrational, and that is true "social anxiety". If you put an autistic person in that scenario, on the other hand, then probably the reason they're afraid of that response is because they've received it many times before. They're fear is based on repeated past experiences, therefore it is not irrational and not the simply an anxiety disorder. That's why people giving the classic social anxiety responses to autistic people is so unhelpful. "Just go out there and talk to people, it'll be fine," or "keep pushing yourself out of your comfort zone and you'll get more confident," don't work if the problem is real and not just in your head.

[mothric]

thinking about the time a former housemate said to me "hey I put these box fans in the living room because it's hot" while gesturing to the fans that I was actively sitting in front of because it was hot. and I said "okay thanks." and she kept standing there like she was waiting for something else so I said "am I blocking the airflow? do you need me to move?" and she said no I'm just letting you know they're here, in the living room, for circulation. and I said well yes, I did put that together. I am enjoying them. thank you. and she looked confused. so I asked "am I meant to do something with this information or are you just informing me?" and she said no I'm letting you know they're here because It's Hot In Here. she seemed a bit aggravated, and her emphasis seemed deliberate.

it took me asking three more times before she finally told me she wanted me to leave the fans where they are instead of moving them to my room or something. and I said oh! I had no intention of doing so but thank you for letting me know what the expectation is.

about a month later she brought up that conversation as the moment it actually clicked for her that I Am Autistic And Will Not Magically Intuit The Unspoken Request You Didn't Ask Me.

[mothric]

I have observed enough allistic communication to know that generally, if somebody points something out to you that you can already see or are already clearly interacting with, they are making an indirect request. but as I don't know what the request is, the only way forward is for me to guess (and likely get it wrong), or prompt the allistic to tell me clearly what they need.

however, allistics don't realize they do this, so asking them to say the unspoken surprises and confuses them. this is not their fault. allistics can be quite emotionally fragile and perceive directness as confrontation, so they habitually rely on indirect speech and coded language to preserve others' feelings. this is why they may find it difficult to be direct, even when asked. I have found that with enough gentle encouragement and reassurance that they are actually helping you, you too can achieve successful communication with your allistic friend or loved one. :)

[mothric]

I've seen more than a few replies saying "I'm not autistic and I wouldn't have gotten that either / your roommate's an outlier / nobody could have gotten that." fair enough, it was a pretty specific situation and it seems she genuinely didn't communicate well. as I often run into issues with indirectness, it scanned to me like all the other times I haven't been able to read between the lines. so let me give a few more examples of this phenomenon that may be more common:

"You left your dish in the sink." > the hidden request is "please clean your dish, preferably right now." since it's phrased as an observation, I don't immediately intuit the request and instead think my housemate thinks I forgot about it. so I reply "oh, I know." housemate thinks i'm sassing her and gets annoyed with me. only then do I realize she was asking me to do something about the dish in the sink.

"There's hot soup on the stove." > said to me while I was preparing a sandwich. the hidden request is "please eat the soup." since it's phrased as a statement of fact, I don't immediately intuit the request and instead think my mom thinks I didn't see the soup. I did see it, but I wanted a sandwich instead. so I reply, "I saw it, thank you." mother thinks I'm being rude and gets annoyed with me. only then do I realize she was asking me to do something about the soup (and furthermore is offended I am eating a sandwich instead).

"Your bread is on the counter." > the hidden request is "please remove your sliced bread from the counter and store it elsewhere." since it's phrased as an observation, I don't immediately intuit the request and think my roommate thinks I meant to store the bread elsewhere and forgot. when I reassure her I know it's there, she gets annoyed. only then do I realize she wants me to do something about the bread on the counter.

"You can turn up the heat, you know." > said to me while I was scrambling eggs slowly over low heat. this one really confused me because of course I knew I could turn up the heat, but I had no reason to as I was only cooking for myself. when I ignored the statement because I was focused on my task and had nothing to say, my mother added, "the eggs will cook faster if you do." sure, I'm aware of this too, but I don't want to cook them faster. I won't get the texture I want. when I reply, "I don't want to, though," mom thinks I'm being rude and gets irritated, then asks me how long I'm going to take. only then do I realize she was telling me to cook faster (because she wanted the stove), instead of simply informing me I could.

"There are donuts in the break room." > a more benign example, but similar outcome. once again I hear this as a piece of information being given to me, and thank my coworker for telling me. when I don't immediately leave my desk to get donuts because I'm finishing a task, my coworker hovers and says, "well? aren't you getting some?" only then do I realize there was actually a hidden invitation, and I was supposed to respond to the hidden part and say, "I'll come get them in a minute," or "no thank you I don't want any."

as I said, I've learned over time this is something many allistic (non-autistic) people do (as well as high masking autistic folks who have learned the social rules and wear themselves out following them rigidly). despite what I've learned, my default autistic response is pretty much always to take the words at face value (especially when I'm distracted or multitasking), before remembering I have to translate them. and while I can make a decent educated guess in most cases, sometimes I just cannot and simply ask, "what are you asking me?"

unfortunately, many allistic people suffer from an inability to take words literally just as much as they struggle to speak literally, which can further obfuscate communication. this is why I emphasize gentle reassurance that you are not criticizing them, but asking them to help you, a person in need, by clarifying their intent. people generally like to be helpful and I have had moderate success with this approach.

ONE MORE THING: I have a bias! this is very US-centric, as that's where I live. some cultures around the world are extremely direct, so autistic people in those cultures may not have the specific issue I describe here. however, every culture has its own set of social norms that include a complex combination of nonverbal visual cues, body language, tone/emphasis, and countless other unspoken expectations for what's considered polite or "normal." the double empathy problem doesn't evaporate in cultures that value direct speech. autistic people just face different problems. thank you and be good to each other

[mothric]

Even More examples of statements that allists in indirect cultures think are direct, pulled from the comments and my own experience (and in my case, missed until well after the fact):

"I'm putting the kettle on." (not just announcing what they're doing, they're expecting you to affirm whether you want tea or not.)

"Boy the trash is full." (not just voicing an observation, they're expecting you to take the trash out.)

"If you leave your window open, bugs will get in." (not just giving you information to decide what to do with, they're expecting you to close the window.)

Any variation of "do you want to do [unpleasant task]?" (you aren't actually supposed to say yes or no, they aren't asking your opinion, they're telling you to do it and saying you don't want to is rude.)

"Let me show you how to do something." (they want you to do it this way, they aren't just sharing an insight that you can choose to incorporate into your habits or not)

"Mm that food smells good." (might be complimenting your cooking, might be hoping you'll offer them some.)

"What are you watching/playing?" (might be curious about your interests, but might also want you to invite them to join.)

"Company's arriving in 15 minutes." (this one was from a mom to her kids and she wasn't just giving them a heads up, she was telling them to clean up.)

"Sorry my desk is such a mess." (APPARENTLY this was NOT a comment on her own desk but implying her COWORKER'S desk was messy and she wanted them to clean it??? sorry to the commenter who shared this one but that sounds genuinely deranged and you can't convince me this is common even for the most indirect allists out there)

to everyone saying this is simply a direct vs indirect culture issue, yes you can have communication breakdowns between people with differing degrees of directness, regardless of their neurodiversity status. what I am trying to illustrate is that autistic people in indirect cultures will miss these indirect cues at much higher rates than others, because we do not pick up on social norms at the same rate or proficiency as everyone else, because of our autism. essentially making us "direct-culture" people by default. some autistic folks do learn and practice those norms (some of us are literally traumatized into doing so), but it's something we often must remind ourselves to do, manually, and it can take a lot of extra effort. this is why high maskers end up in burn-out if they cannot learn to unmask btw.

(thank you also to everyone weighing in from around the world! I do hear Germany and Finland are more direct cultures so "taking things too literally" may not be as much of an issue there. this highlights the inherent bias of the DSM-V which assumes US cultural norms when evaluating for autism. another post for another day.)

[queerasaurolophus]

The worst part for me is that allistics will read that subtext into anything I say as well.

If I inform someone that there’s another way to do a task, they assume I want them to do it that way. If I inform them that there’s hot water (in case they want it for anything), they assume I’m offering them tea. If I express curiosity about something they’re doing, they assume I want to join in. I’m pretty sure people frequently assume I’m criticizing them, but I’m not sure how or why—I just get that vibe on occasion and haven’t linked it to any particular actions or statements.

It’s frustrating being asked to not only translate everything they say into my own understanding, but then to translate everything I want to say back for them. I’m not fluent in that language! Why am I expected to be?! It’s such a double-standard.

[dragon-in-a-fez]

does the body ALWAYS have to keep the score? maybe we could just have a friendly game this time. maybe we can just have fun without putting numbers on it

[lifeafterpsychiatry]

Like I just feel like a concerning amount of social skills advice for autistic people is written with the fundamentally incorrect assumption that 1) all autistic people could learn how to socialize normally if only they knew it was important and put in a bit of effort, and that 2) thus it is actually fine to judge the autistic people who don't

[quietmachine]

3) somehow the way to convince all these autistic people of the importance of "learning the rules" and make them put In the effort, is to be a condescending and rude asshole (a totally novel approach!!)

[disabilityaidpositivity]

Friendly reminder to check the feet/tips on your canes and crutches; do they need to be replaced?

Also, don't forget to check the feet of your shower chair/stool occasionally ✌️

[fvckw4d]

Interesting that a criticism like "you are always trying to find a way to justify the value of disabled people through labor extraction because your worldview worships labor. this is a weakness of the communist as much as the capitalist" is met with "shut up bitch, get back in the kitchen, wash a plate."

[fvckw4d]

a lot of people will specfically insinuate that you are trying to get out of doing work, because you are a bad person. "Me when i don't want to do chores." Confronting how they will be treated if and when they cant do any chores is too terrifying to think about, so everyone who asks that question is just trying to justify their own laziness.