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auntie cistamine Profile picture
auntie cistamine
@laurenancona
present • 338ppm • she • no DMs #ForTinu
Nov 16, 2024 • 5 tweets • 1 min read
this specifically is where clinicians need to expand understanding

if you’ve never had to save all your energy for one trip diwnstairs per day, or struggled to stay fed while living all alone, you cannot fathom the terror of losing even a little function you’re thinking from the point of view of someone with extensive supports, both medically & socially, that many if not most severe ME patients either never had or have lost over time

it is literally unfathomable for you, so you have to listen to patients
Aug 13, 2024 • 6 tweets • 1 min read
nobody gets saltier at the implication that they might be autistic than a high-masking unrecognized autistic person

it implies the mask isn’t perfect, which is the worst thing that could happen (in their minds)

and I get it. I do.

that’s real, nontrivial trauma to unpack. the tragedy of white supremacy’s demand for perfectionism is we learn to pride ourselves for the very thing that keeps us isolated & lonely

the pain I could not name
Aug 1, 2024 • 4 tweets • 1 min read
I lost every relationship that meant anything to me.

There’s no way for me to connect my life now to my life before 2020.

When you’ve seen how easily people will discard you…idk how you come back from that. The people I trusted most in my life lied to me, gaslit me, acted as if I were crazy for not wanting them to suffer the way I was and am.

I don’t know how to reconcile that with anything I was taught about love & care.

That wound will never heal.
Mar 26, 2024 • 4 tweets • 1 min read
Always a good time to thank Jenny McCarthy for being such an enormous anti-autism bigot she almost single-handedly set measles vaccination back years of work after the disease was declared eradicated in 2000 Rich white women will single-handedly ruin decades of public health work, effectively leaving unvaccinated children vulnerable to measles, instead of just accepting their autistic child and that they might themselves be neurodivergent.
Feb 24, 2024 • 8 tweets • 2 min read
Tired of watching people burn out because we don’t talk enough about hyperempathy as a neurodivergence that can be disabling

We have concepts for mirror-touch synesthesia + allostatic load (& analogs)

I don’t know how to frame this yet, but it’s yet another sensory conflict Mirror-touch synesthesia Wikipedia: Mirror-touch synesthesia is a rare condition which causes individuals to experience a similar sensation in the same part or opposite part of the body (such as touch) that another person feels. For example, if someone with this condition were to observe someone touching their cheek, they would feel the same sensation on their own cheek. Synesthesia, in general, is described as a condition in which a concept or sensation causes an individual to experience an additional sensation or concept.[1] Synesthesia is usually a developmental condition; however, rece... The way normies communicate about empathy includes little nuance, their concepts are based almost entirely on what another person experiences outside of you instead of the internal experience of having empathy, so this whole topic needs more framework for shared understanding
Jan 29, 2024 • 11 tweets • 2 min read
wait you mean there’s already a name for the cost of living around allistics Wikipedia entry for allostatic load: Allostatic load is "the wear and tear on the body" which accumulates as an individual is exposed to repeated or chronic stress. The term was coined by Bruce McEwen and Eliot Stellar in 1993. It represents the physiological consequences of chronic exposure to fluctuating or heightened neural or neuroendocrine response which results from repeated or prolonged chronic stress. I am UPset
Jan 23, 2024 • 6 tweets • 1 min read
it’s actually been wonderful for those of us that struggle to interact with people that insist on abusing my ears in order to communicate what could easily have been an email

having to talk on the phone sucked

long live text-based comms it’s okay to say that spoken communication is easier for you and you prefer it

it’s not universal, though, & there’s no reason to be weirdly ableist about who can & cannot speak on demand

& maybe you didn’t know that was ableism, but now you do
Jan 20, 2024 • 9 tweets • 2 min read
hey can somebody explain what “active viral replication” means this is viral replication, apparently illustration of viral replication, spring 5 stages beginning with attachment, penetration, biosynthesis, assembly, & release of new virus critters to run around your body
Jan 16, 2024 • 5 tweets • 2 min read
I guess it's fine if the thing that finally got me to touch code again (post burnout) is CO2 sensor data 😭
the cPTSD is stronggggg

but this little python package can read right from the nearest Aranet4, pretty rad screenshot of some code from the claranet4 python package running in a terminal. it shows 7 Aranet4 sensors in the proximity, and displays the current sensor readings from the closest one. the values read: co2: 826, temperature: 21.0, pressure: 1008.8, humidity: 46.3. I just needed to tell somebody that I got a thing working. It's a silly little thing that's a big deal, beause it means my brain can still do a thing it's struggled with since C*vid.

Now I can see my Aranet4 CO2 readings in the toolbar of my Mac 😎 screenshot of the toolbar in MacOS showing text "702ppm CO2", which is being read via bluetooth from an Aranet4 sensor
Jan 13, 2024 • 19 tweets • 3 min read
I knew this child was going to be autistic before even clicking through

calling ARFID an eating disorder when it’s a set of valid sensory requirements is infuriating to me

“ARFID” is a lack of texture, taste, & allergy accommodation

ppl WANT to eat but can’t idk about you but if a food makes me feel nauseated, I don’t want to eat it

it’s telling that this is completely disregarded as a valid possibility & these kids are being labeled anorexic

it happened to me, long before I knew I was autistic, & I’m gonna keep fighting about this
Dec 12, 2023 • 10 tweets • 2 min read
I tell people to start with their heart rate

lost of folks have a monitor on their watch, but it’s something you can learn to notice on your own:

is your heart rate the speed of a ballad or a Sousa march? folks with dysautonomia may be working with an entirely different set of personal autonomic “norms”….which is something to be aware of too, & many are not
Dec 6, 2023 • 8 tweets • 2 min read
I uh

just got off the phone with a reporter, so I really hope those guys have some stuff to promote, because there will be no better time 🤣
Dec 5, 2023 • 43 tweets • 11 min read
just had the weirdest experience

was watching an X-files episode & there’s this country song playing in the background of the bar they’re in

& it’s so good it jars me out of my idle multitasking to Shazam it

except Shazam can’t find it

so I look up the lyrics

& all I find from the lyrics are people talking about THIS episode of the X-files from 1998

wut
Dec 4, 2023 • 4 tweets • 1 min read
normies aren’t magically gifted at reading people, they’re just all conforming to the same set of rules

there’s a HUGE difference THEY USE SCRIPTS YALL
Dec 4, 2023 • 6 tweets • 2 min read
unmasking is itself trauma work, for most people

unmasking in relationship can require renegotiation of agreements

when both+ people in relationship are working through unmasking / showing up authentically for themselves, everybody needs to have grace

walking each other home this doesn’t just apply to romantic relating

parents with adult children unmasking

adult children with parents unmasking

family, chosen or otherwise
housemates
friends
colleagues
Dec 4, 2023 • 6 tweets • 1 min read
if you’re both unmasking & doing trauma work at the same time

girl buckle up we need a roto or sthing good grief
Nov 15, 2023 • 12 tweets • 3 min read
it’s a rough ride when you try to stop doing things for other people’s approval for the first time

it’s rough to realize you were living like that, just to survive

it’s taken me years, it’ll probably take more it’s not just that you’re changing your own behavior

it’s not even that you have to deal w/ other people’s reactions to you putting yourself first
Nov 7, 2023 • 5 tweets • 1 min read
When you are punished for asserting your needs, eventually you learn either that having needs is bad, or your needs are bad.

Both lead to difficulty getting your own needs met later, to the extent that attempting to do so can lead right back to dissociating or even SI. It’s not even fair to call it self-sabotage: it’s trying to survive while crossing an emotional minefield, every day.
Oct 30, 2023 • 13 tweets • 3 min read
not knowing I was autistic meant that the only reason I had to attribute for the things I couldn’t do was that there was something wrong with me

except I had nothing specific even to point to as ‘wrong,’ so I internalized that I was bad & unworthy of being treated well I’d already had an ADHD diagnosis & meds for like 15 years, so that ‘couldn’t be it,’ either

feeling that level of shame for making even the smallest mistake (that other people do too!) made it nearly impossible to engage with critical feedback when it *was* warranted
Aug 24, 2023 • 7 tweets • 2 min read
Neurodivergence & effects of Covid-19
Research thread ncbi.nlm.nih.gov/pmc/articles/P…
Jul 25, 2023 • 5 tweets • 2 min read
as a musician it irks the everloving %#%! out of me that Loops has somehow convinced people it’s a novel product when these things have existed for years

here, enjoy not paying $25 for basic gear that has been around forever: product image from Amazon of Downbeats, a product that does exactly the same thing that Loops does without hanging out of your ear you can even get them at lower and higher levels of sound filtering, & they don’t hang out of your ear