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@miaoue@neurodifferent.me cover
@miaoue@neurodifferent.me avatar

miaoue

@[email protected]

was a techie in a previous life. now a professional medical mystery and a cat from outer space. also https://disabled.social/@miaoue

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arcana , to actuallyautistic
@arcana@fedi-01.starlight.quest avatar

@actuallyautistic i'm so exhausted of how inaccessible activism and social justice is. sometimes it feels like every single movement other than neurodivergence stuff specifically excludes neurodivergent people. even a lot of general disability movements.

constantly seeing new rules on what we can and cannot say, how to correctly engage with topics, etc really fucking strikes a nerve at this point.

like, "don't ask questions and do your own research," because asking clarifying questions is a dick move, even if you're actually confused and just want to learn how to help and it's not researchable. (source: I HAVE DONE SO MUCH FUCKING RESEARCH)

"don't say this word or phrase anymore" like okay, sure if i give someone my preferred pronouns i'm clearly transphobic against myself because i'm supposed to just say "pronouns." i'm not allowed to say "socialized woman" to describe my shared experiences anymore, either, because apparently some bigots made a dogwhistle out of it and somehow that's my responsibility (this gripe excludes slurs, which are pretty cut and dry)

like, fucking honestly, it feels like 95% of social justice conversations these days are just policing general social interactions with extremely unintuitive etiquette, alienating anyone who cannot make sense of the neverending rules.

which — oh, right. that group consists primarily of autists, doesn't it? "well that's okay, autistic struggles are clearly exaggerated and if someone sounds like an asshole that must mean they're an asshole and i should treat them like one."

i want to be an effective activist SO BAD but the community is ACTIVELY hostile and inaccessible to me because of my adhd, autism, and trauma. i basically give up at this point and i hate people.

18+ miaoue ,
@miaoue@neurodifferent.me avatar

@arcana i feel similarly. i used to be part of queer, trans, and disabled support and advocacy groups, but had conflicts to the extent that i had to leave or was thrown out of every one. the inciting incidents were things that never made any sense to me. and the conflict resolution process, if there was one, didn't help me understand what i had done wrong, it was about demanding an apology.

experiences like this have led me to part ways with the social justice and disability justice movements, even though (i think) i still share their goals. social justice-oriented groups often seem "hyper-NT" to me: hierarchical, exclusionary, judgmental, groupthink-y. being autistic in this sort of environment is extra difficult and more likely to lead to conflict.

i find it especially sad because we are more likely than baseline to be queer and to have other disabilities, so the groups should be for our support and advocacy, but in reality we are often excluded.

@actuallyautistic

bike , to actuallyautistic

@actuallyautistic

Grumpy about the medical system, complainy

After an ongoing saga in which my medical records were deleted from the online database never to return, and in which I contacted my clinic to ask for these records multiple times per month in various ways, and in full violation of , I finally got a paper copy of my medical records in the mail.

So I'm reviewing this paper copy of my medical records that I finally got a little while back. And it is much more detailed than the information I had access to through the online portal.

It is riddled with errors. I say one thing. They expect to hear another. They write it down. It's now in my permanent record and I have to just live with records that are wrong or spend hours and lots of emotions trying to get it fixed.

Is angry the emotion I'm having? I don't know. I don't know what emotion it is, but every time I try to think about interfacing with the health clinic, it's just awful. I think I don't need a health clinic, I need like a personal professionally trained health nerd.

Most people: hi doc, I've got symptoms A, B, C.
Doctor: let's test your thyroid. (test) Great! Here, take this pill for the rest of your life.
Most people: ok, doc! Thanks! All better now!

Me: hey doc, can you test my thyroid?
doctor: whyyy?
me: I was reading about it and I think it might be off
doctor: sure ok (test) great! take this pill for the rest of your life!
me: wtf no don't you need to do more tests? make sure there isn't a root cause? I read a book for health professionals on nutrition and thyroid
doctor: (test). how about now? now will you take the pill for the rest of your life? we'll start you on a low dose, we promise.
me: how about I try to fix those nutrition results that were off
doctor: sure, we'll retest in a few months
doctor: crickets
me: hey you forgot about me
doctor: (test) ok look if you don't want to take the pill don't take the pill
me: i am fine with taking the pill if that's the thing that makes the most sense
also me: don't you need to make sure that pill isn't going to cause trouble for me per the instructions in its packaging?
doctor: this is not my expertise, go talk to the homeopathic doctor (test) (abandon patient)

miaoue ,
@miaoue@neurodifferent.me avatar

@bike this warning on your synthroid refers to the situation where someone has a problem with the adrenal glands, and cannot produce enough cortisol, but that problem may be obscured by the hypothyroid state, where the body clears cortisol more slowly. taking thyroid hormone could cause this person's latent adrenal problem to become a sudden crisis.

yes, your doctor has a responsibility to not give you this treatment if it would hurt you to receive it. but i don't think any doctor would take this as a need to prove you don't have an undiscovered adrenal insufficiency. severe adrenal insufficiency is not so common and typically a sufferer has some symptoms indicative of low cortisol. if you don't have any signs or symptoms, the doctor is not likely to look further.

most doctors, sadly, aren't interested in getting to root causes. i think of them as tech support for the human body. if they get the current problem to go away, their job is done. they only care about the "why" as far they have to in order to fix the problem.

@actuallyautistic

JeremyMallin , to actuallyautistic
@JeremyMallin@autistics.life avatar

I rarely ever address anyone by name. There are people I've known for decades whose names I've never even used when addressing them directly.

Is that an thing?

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@JeremyMallin i'm the same way - rarely address anyone by name, even my partner. and i feel awkward when someone else addresses me by name unnecessarily. it's like the eye contact of conversation.

@actuallyautistic

spika , to actuallyautistic
@spika@neurodifferent.me avatar

I saw a post on another social network that felt a little aggressive about people needing to learn to use tone tags (to which most of the replies were people who had never encountered a tone tag), and I found myself wondering... Do folks find this useful?

Honestly, I have a hard time remembering what they all mean much less use them as an indicator of what tone I should be applying to what I'm reading or writing.

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@spika i've had a mixed experience with tone tags. sometimes they add missing tone information to a post, or clarify how to interpret the tone when it was otherwise unclear, which is indeed helpful. but even in the groups that use tone tags commonly, i get the idea people are reluctant to put a label on their negative tone usage. which i understand, because it's very confronting to do so directly (hence why neuronormative communication relegates this sort of thing to tone in the first place). but it makes the system not so useful, if people only ever say they are /nm (not mad) and never admit when they are indeed mad and they are addressing you aggressively.

@actuallyautistic

Autistrain , to actuallyautistic
@Autistrain@neurodifferent.me avatar

Since I learned I'm an autist –which is already a journey–, I acquired a lot of knowledge about myself. I understand why I have this feeling at this moment. It's not perfect and it will not be. My quality of life also improved. I didn't become someone else. I change to the real me.

One thing, I was completely unaware of before is the hypersensitivity to the noise. It was a rollercoaster to discover this. The first downhill was long and exhausting before I could enjoy it. I enjoy my earplugs and headphones. I can feel the anxiety lowering when I wear them. The peace of a less noisy environment.

I can't forget the difference it is when I can remove the noises. I don't completely enjoy the silence. I still hear a white noise. My ears are really sensible. While people are enjoying the sound of people playing music, I spot the mistakes, the irregularities. At the point that, I can hear a difference in my headphones when my hair is too long, the noise cancelling doesn't work as well as when the hair is cut.

Nowadays I'm happy to know all of this. I apply strategies to have a good life. I enjoy a quiet life.

@actuallyautistic @neurodiversity

miaoue ,
@miaoue@neurodifferent.me avatar

@Autistrain @actuallyautistic @neurodiversity i'm similar. i always knew that i was sensitive to loud noises, but it took me a long time to consider that i was also sensitive to noise at a moderate volume, and how consistently wearing earplugs and headphones would change my life. even longer to understand the important role that soft, gentle sound plays in calming me, because i also don't enjoy silence - i still hear the sound of devices in the room, or air moving, or my own body.

PossiblyAutistic , to actuallyautistic

Let's try the AQ, at https://embrace-autism.com/autism-spectrum-quotient/#test

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@Jobob i struggle with that question also because "change" is too wide a category to say i dislike all of it. i dislike changes that are unpredictable, disruptive, and externally imposed. but i usually like my own changes that are planned, under my control, and improve my life.

@roryreckons @actuallyautistic @PossiblyAutistic

youronlyone , to actuallyautistic
@youronlyone@c.im avatar

When you're you do look younger.

I voted earlier today. We have two, one for Barangay (Town) and one for Sanguniang Kabataan (SK or Youth Council).

The election rep handling the ballots asked for my ID because he had to confirm my age.

  • SK (Youth Council) is open for 15 to 30 years old voters.

I look like I'm in my late 20s.

While he did not ask me for my age, better to confirm it with an ID to avoid election fraud, when people ask me, I used to say, "I stopped counting at 30" (now it's 28). It's half-joke, the other half is the truth, people do mistake me to be in my late 20s.

Many , for some reason, look half their actual age once we enter adulthood. I'm not aware of any scientific explanation regarding this, but it has been observed.

For me, this was not the first time. I was always mistaken to be underage (under 18) until I hit 25-27. It was always funny whenever I was with friends or colleagues because they all reacted. 🤣

It was a 5–10-year gap. Now it's a 20+ year gap. Maybe one day, there will be a 30-year gap with my actual age.

How about you? What's your experience?

@actuallyautistic @actuallyautistics @autistics

miaoue ,
@miaoue@neurodifferent.me avatar

@youronlyone @actuallyautistic @actuallyautistics @autistics i also look significantly younger than my age. though i think part of the issue is my body type (slim and very short) and that i present somewhat androgynous, and people think that looks childlike. so i don't know how much it is really my face that looks young.

it has been a real bother at some times - i've been mistaken for an intern at my job, thrown out of a bar, and assumed to be my partner's daughter! on the bright side, people are kind to me when i don't know how to perform everyday adult skills. they are probably thinking "well that person is 16...."

StevenSaus , to actuallyautistic
@StevenSaus@faithcollapsing.com avatar

How do you tell the difference between reactions you have because you're neurospicy and the reactions you have from past trauma? (Let alone where they overlap!)

(I'm talking more behavioral than sensory here, things akin to rejection sensitivity, etc)

@actuallyautistic @actuallyaudhd

miaoue ,
@miaoue@neurodifferent.me avatar

@StevenSaus @actuallyautistic @actuallyaudhd i'm not sure there is a meaningful distinction. for one thing, trauma related conditions like ptsd are also neurodivergences (or neurospices?). and i think some behaviors/experiences that are classified as autistic are really post-traumatic from the traumas experienced as an autistic person in a neuronormative world. also, some behaviors are caused by both. so there is overlap to the point where those are not separate categories imho.

apodoxus , to actuallyautistic
@apodoxus@mastodon.online avatar

@actuallyautistic

If you could improve one concrete thing about your mental health or social skills, what would it be? What practical goal would you set if it were attainable?

miaoue ,
@miaoue@neurodifferent.me avatar

@apodoxus @actuallyautistic for years now i've been working on "social self-defense". it's a skillset i wish i would have had earlier in my life so maybe i could have been safer from people who took advantage of me. but better to learn late than never

if i would try to enumerate the minimal set of skills necessary for "social self-defense". 1) perception of another person's intentions or goals in an interaction. 2) responding in a self protecting way to social attacks, like mocking, intimidation, or manipulation. 3) disengaging effectively from social situations i don't want to be in.

Dr_Obvious , to actuallyautistic German
@Dr_Obvious@chaos.social avatar

@actuallyautistic
When travelling I suffer from strong anxiety related to the fear of bed bugs or other critters and the idea I could bring them accidentally to my home. I guess it differs from phobia, because I don't fear the animals themself, it is more anxiety of an uncontrollable situation at home.
I know that gold standard for phobia like things is CBT, but I read that CBT does not work very well for autists. Did you face similar anxiety and found a solution?

miaoue , (edited )
@miaoue@neurodifferent.me avatar

@Dr_Obvious @actuallyautistic i've been through intensive therapy for ocd, which is typified by this sort of thought/behavior pattern: i'm afraid that X will happen if i do/don't do Y. the exposure and response therapy (ERP) for ocd is classified as a type of CBT, but it is not the same as cognitive restructuring (the one with all the worksheets and toxic positivity). it is about un-making the association between the anxiety X and the unwanted behavior Y, hence why it's a behavioral therapy. but i don't think any therapy with that goal could be otherwise.

autistic people definitely can do ERP. i'm an example of such 😄 as always, the practitioner should be flexible and adapt the techniques and goals of therapy to the individual. i have recovered enormously through good therapy, and at times along the way, i have been very hurt by bad therapy. unfortunately i could not tell based on the modality which would be which.

Dr_Obvious , to actuallyautistic German
@Dr_Obvious@chaos.social avatar

@actuallyautistic
I've read autists don't understand proverbs and take them to literally. I wonder if this is actually an accurate description.
Some days ago I read somebody here stating something like the one eyed under the blind would've been put in an asylum. Brilliant!
In germany we have the proverb, everybody is the smith of their own luck. I like to answer, but not everybody got an anvil.

miaoue ,
@miaoue@neurodifferent.me avatar

@Dr_Obvious @actuallyautistic i'm ok at understanding proverbs and idioms, even if i haven't heard them before and have to figure them out from context. but a part of my brain always envisions the literal meaning alongside the figurative one. if someone tells me "it's raining cats and dogs", i know what that means but i still have a mental image of actual cats and dogs falling out of the sky. i hope somebody catches them! (the dogs at least...the cats can probably land on their feet.)

seanwithwords , to actuallyautistic
@seanwithwords@mstdn.social avatar

Late-identified people, I'd love to hear what your meltdowns look like.

I feel like much of my time is spent with disregulated body sensations. I often feel an urge to DO something but I get so twisted up in executive function indecision-making + ableist shame/judgement about looking "wrong," and with 5 decades of "moving with the sole purpose of not being noticed," that I only melt down on the inside.

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@seanwithwords @actuallyautistic it could include screaming, crying, hyperventilating, flailing and kicking, throwing and breaking things, self harming in various ways. not necessarily all of those things every time, and sometimes only for few minutes, but intense and disturbing. i used to think maybe i shared my body with a monster, who took over and did violence while the person-mind was not in control.

miaoue ,
@miaoue@neurodifferent.me avatar

@seanwithwords @actuallyautistic i also have the internal only version other people described, the explosive feelings without loss of control, like the meltdown hasn't quite come to the surface but it's close enough to feel. i don't always have this state but if it happens, i must soothe myself or it might become a full meltdown

miaoue ,
@miaoue@neurodifferent.me avatar

@seanwithwords @actuallyautistic i don't think i've ever considered a meltdown helpful, except maybe in the sense of sending a strong message, which couldn't be heard in a subtler way. emotionally, i feel they don't really deal with anything but rather make more emotional chaos that remains to be dealt with. so if i can avoid doing that, it's better for my emotional state. sometimes it can't be avoided though.

CynAq , to actuallyautistic
@CynAq@neurodifferent.me avatar

I remember a weird polemic I got into at kindergarten. This is late eighties.

I was already reading at a... I don't know what level. I never understood what "reading levels" were anyway, I mean, if I can read, I can read, right?

Well... Turns out none of the other kids apparently were able to read, at least not openly, and reading was actively discouraged by the staff there. There was a storybook hour where everyone picked a story book with illustrations and PRETENDED to read.

I found out when the teacher lady noticed I was actually reading the thing and pulled it away from me, telling me I wasn't supposed to actually read the book with, you know, words printed on it. The justification was "if you read now and get good at it, you'll have a terrible time being bored in first grade when all the other kids are still trying to learn."

Lady, I don't think you understand how reading works. I can't UNLEARN how to read once I learned it.

This is still within my top five unfathomable school experiences.

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@dyani @CynAq @actuallyautistic hello, a fellow noncompliant napper 😅 i distinctly recall explaining that i'd like to do something more interesting with my time than pretend to be asleep. my request was denied.

AutisticAdam , to actuallyautistic
@AutisticAdam@autistics.life avatar

A strange part of being autistic is getting in trouble for your facial expressions, tone of voice, not inferring things you haven’t been told, & somehow implying things you haven’t implied. It can feel like people get offended by stuff that’s unavoidable & beyond our control.

You're basically getting in trouble for what others are reading in between the lines because they're making assumptions that are only valid for the people they're used to dealing with.

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@nddev @Thumptastic @roknrol @AutisticAdam @actuallyautistic thank you for saying so, i also think it's very important we talk about domestic violence, but it's especially hard for me to talk about this, since it's personal for me.

it makes me sad that ND men have a reputation for violence, because it's very much not deserved by the vast majority. all of us are more likely to be the victim than the perpetrator of an act of violence

what is most important to me is looking out for the survivors in our community. as we are in a community of autistic people, statistically, we are among more survivors of domestic violence. so you may be interacting with someone who has more triggers or a more acute need for safety.

miaoue ,
@miaoue@neurodifferent.me avatar

@26pglt @nddev @Thumptastic @roknrol @AutisticAdam @actuallyautistic thank you too, i appreciate how you expressed this. i can also be violent and harmful, but i am the second type so it is self-directed. my partner tells me it hurts him to witness my meltdowns, even though he has never felt threatened by me, he is connected to me and my self harm hurts and upsets him.

i hope it shouldnt be controversial to say that even if it's not voluntary or intentional, harming oneself or others is a bad outcome. i want to avoid it when i can. so far, my only helpful strategy is giving myself a better life and practicing self acceptance and self love more. as a result i have fewer/shorter meltdowns and hurt myself less.

theautisticcoach , to actuallyautistic
@theautisticcoach@neurodifferent.me avatar

How do my comrades measure their level of dysregulation/ regulation?

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@loops @theautisticcoach @actuallyautistic i'm similar - i'm not that good at self monitoring at the best of times, and the more overwhelmed i am by sensory input, emotional stress, pain, etc, the less i can think clearly, communicate effectively, and make decisions. so i can tell if i'm doing ok, but if i'm not ok, i can't figure it out and/or can't express it. i need someone else who can recognize that i'm struggling and help me escape from the offending situation.

theautisticcoach , to actuallyautistic
@theautisticcoach@neurodifferent.me avatar

How do my comrades practice self-care in the midst of an autistic meltdown? After?

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@theautisticcoach @actuallyautistic i think the closest i get to self care during a meltdown is understanding and accepting what's happening to me, not blaming myself or becoming afraid of my own feelings or behavior. before i understood what meltdowns were, i was bewildered and frightened of my all consuming, destructive, upset-rages. i didn't know it then, but my reaction created a self-reinforcing loop of upset and overwhelm that extended my meltdowns. practicing self acceptance instead has made my meltdowns shorter and easier to recover from

dave , to actuallyautistic
@dave@autisticnomad.social avatar

@actuallyautistic

Late-dxed/IDed friends:

Once you realized you were autistic, did you encounter overwhelming and overloading situations that you remembered "dealing" with much better before you learned you were autistic? Like learning you were autistic somehow changed how you processed these kinds of situations?

I'd love to (and frankly, need to) hear your stories. Please share if you're comfortable 💚🙏

miaoue ,
@miaoue@neurodifferent.me avatar

@dave @actuallyautistic yes and no. my tolerance for stressful situations has varied at different times in my life, so sometimes i return to a situation i could handle previously and now i can't or the other way around. but also my tolerance has shifted as a result of realizing i'm autistic, not directly due to having the information, but due to the adjustments i've made in my life. i've been living a much calmer and more curated life, more suited to my needs now that i understand what those are, and having experienced this, now it seems unbearable to reverse it.

miaoue ,
@miaoue@neurodifferent.me avatar

@dave @actuallyautistic in a sense i would say i feel similarly with my chronic illness - if i run out of my medication, it seems all the more unbearable to feel sick again. even though i used to feel that way constantly before i found a treatment that worked for me. i adjusted my sense of what's normal since then; i thought suffering without medication was normal in the past, but now i find it horrible and i feel i shouldn't have to endure it, even on a temporary basis.

theautisticcoach , to actuallyautistic
@theautisticcoach@neurodifferent.me avatar

Good morning comrades

You’re beautiful & your life is inherently valuable

Have a great day

@actuallyautistic

miaoue ,
@miaoue@neurodifferent.me avatar

@theautisticcoach @actuallyautistic same to you!

housepanther , to actuallyautistic
@housepanther@masto.goblackcat.net avatar

@actuallyautistic Does anybody else out there actually prefer reading to watching TV? I find my own imagination creating the characters and scenery from what I am reading to be far more entertaining than what I watch on TV. LOL, I am such a geek. 🤓 😹

miaoue ,
@miaoue@neurodifferent.me avatar

@housepanther @actuallyautistic reading is my lifelong favorite too. i grew up without tv and never got the hang of broadcast, but have started enjoying streaming tv and movies. for me, while i find some content is really suited to the audiovisual format, it's also much easier to become overwhelmed with the sheer throughput of sensory information. i have to be careful what i watch and take some shows in small doses.

cynaq , (edited ) to actuallyautistic
@cynaq@c.im avatar

I just did that test.

I went in blind and didn't think I'd score too high because as far as I understand what monotropism proposes, I didn't think it fit my profile very well. I tried to answer the questions as accurately as I could, without overthinking.

Well...

The result says I'm more monotropic than 73% of autistic people and 98% of allistic people.

I guess I was misunderstanding what monotropism would feel like, if these results are anywhere near accurate, because I'm quite surprised, to say the least.

Would anyone else like to chime in and discuss this with me a bit? This result was not at all what I was expecting.

@actuallyautistic

Edit: this is the questionnaire https://dlcincluded.github.io/MQ/

miaoue ,
@miaoue@neurodifferent.me avatar

@cynaq @actuallyautistic i scored:

> Monotropism Score: 184 / 235

> Your Average: 3.91

> This score suggests that you are more Monotropic than about 25% of autistic people and about 90% of allistic people based on data from the initial validation study.

it's tough for me to assess how accurate i find this because i still don't feel i really grasp what monotropism is. i have read various explanations (many can be found at https://monotropism.org/explanations/) which each define it a bit differently, which has left me with several competing understandings rather than a better understanding.

i did get that monotropism relates to one's pattern of attention and to the scope and intensity of interests. but i don't see how some of the questions on the quiz relate to monotropism - like the ones about making routines. i suppose this is an aspect of the theory i don't understand yet.

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