i honestly think modern western medicine knows nothing about neurodivergent people and neurodiversity is about more than just our brains - we are different in almost every way so outside of acute injuries, doctors can’t really help us bc we don’t exist in their worldview
i’ve been thinking a lot about the extremely high comorbidity rate with autism, POTS, EDS, and MCAS... that’s every system in your body, every organ. all working differently than in the abled NT “standard.” that’s an entirely different organism that has different survival needs
sorry for the impersonal language, i’ve been fascinated by realizing that my body absolutely does not abide by the rules i was taught about how bodies and brains are “supposed to” function, and it’s illuminating to see it as a different kind of human. i’m not what i thought i was
I've had to learn by trial and error that nothing affects me the way it’s supposed to. medicine doesn’t work or requires a wildly different dose, I am incredibly sensitive to some things and strangely hardy in other ways. the calories in/calories out math doesn’t hold, either.
It's tough to discuss because we live in a society where different means dehumanized, and dehumanized means killed. we lean on “we’re just like you” with a silent second clause, “so don’t murder us.” but denying our difference is killing us, too.
it’s not a coincidence that the same demographic group has so many of the same chronic illnesses, none of which modern western medicine can explain, find causes for, diagnose accurately, treat effectively, or cure. we’re treated like individual medical mysteries, our own islands
autistic people tend to have different sleep patterns and eating habits than NTs. we often have GI issues, which we’re probably trying to accommodate with our picky eating. meltdowns are connected to overstimulation and energy levels & require lifestyle changes to avoid.
autistic burnout is absolutely not adequately explained by medicine. we don’t understand all the ways it affects our health. i experienced apparent thyroid problems in burnout that couldn’t be found in testing, and other autistics have, too. is a healthy thyroid the same for us?
this is anecdotal but three of my grandparents, all of whom were ND, died in their 50s and 60s of supposedly unconnected causes - MS, abdominal aortic aneurysm, lung cancer. why? what happens to us? i think we have different health needs. our systems require a different balance
we’re trying to fix a printer with the owners manual to a fax machine. no wonder we struggle with our health & to get answers or adequate care - the medical establishment hasn’t noticed or doesn’t care that we require our own medicine. they can’t help us if they can’t even see us

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More from @erikaheidewald

25 Apr
what does @NEXTforAUTISM really stand for? this essay by one of their board members who’s also part of producing #ColorTheSpectrum about how she abused and abandoned her autistic son for not being fun and making her feel loved makes it pretty clear! #AutismAcceptanceMonth #autism
read the whole thing yourself still up on their website bc apparently they’re proud of this shit

nextforautism.org/news/twenty-mi…
i knew that all they care about is having a kid who makes them feel loved and important enough but god damn she fucking admitted it in print. they’re not even ashamed of it. she describes HER SON like a curse or inanimate object that stole her chance at the son she wanted to have
Read 6 tweets
24 Apr
fascinating paper on how the diagnostic criteria for autism in the DSM V were agreed on. look at Member C’s statements. That’s one of the people responsible for defining autism in the DSM. A guy who thinks people fake autism to escape marital problems

researchportal.port.ac.uk/portal/files/1…
This is why you can't take this shit to heart. There are no truths waiting for you in diagnosis. Nobody knows what they're doing. There are no experts distilling essential truths, no definitive tests. There’s just a bunch of interpretation of behavior by many people for decades
any time you doubt yourself, just think of Member C. He doesn't doubt himself, he has shit for brains, and he’s ruining autistic people’s lives. They don't know more about autism than you do. They're not the experts.
Read 4 tweets
23 Apr
society pathologizes all of our behaviors and then when we notice, people yell at us for pathologizing our behaviors
“everybody does that! Stop pathologizing normal behaviors.” ah, so you've noticed our pathologized behaviors are actually normal
“everybody does that! Are you saying everyone is neurodivergent?” Not everybody but if you are then there's a pretty good chance most of the people you know are, too
Read 4 tweets
23 Apr
it’s so weird, maybe we’re so “high functioning” bc we weren’t systematically abused as much and were allowed to develop into our adult brains. Maybe if you don't break people, they function better. Maybe people function better when they're not overstimulated & traumatized. Weird
Maybe if we weren't systematically abused at all and none of us were forced to endure overstimulation to appear normal and all of us were allowed to develop normally into the autistic adults we are supposed to be, we would all “function” perfectly as we were supposed to 🤔
Maybe the more you traumatize someone by trying to make them into someone else, the more it harms their ability to function. And maybe then labeling them “low functioning” because of damage you inflicted is pretty fucking evil. Hmm.
Read 6 tweets
23 Apr
We have one week until #ColorTheSpectrum. We're not going to stop it from happening but we could make it a PR disaster & that is what will stop them from doing these events in the future. I’m going to make YouTube videos & TikToks about it every day this week. Flood the hashtags
The livestream itself is going to be interactive. I don't know exactly how it will work, but we should be in there, interacting. There will be plenty of people tuning in on Friday who were not paying attention to the hashtag prior to that evening. It’s an opportunity for us.
Keep trying to get people to drop out, the Youtubers are probably reachable. Try to get them to make public statements. The celebrities are probably involved bc of Robert Smigel, he and his wife made The Night of Too Many Stars & work with Next for Autism nextforautism.org/news/twenty-mi…
Read 7 tweets
23 Apr
I USE STRONG LANGUAGE ON PURPOSE FOR POLITICAL REASONS. USING STRONG LANGUAGE IS NOT POINTLESS EMOTIONAL VENTING, IT IS HOW YOU GET PEOPLE TO HEAR YOU AND HOW YOU CHANGE CONVERSATIONS IN THE PUBLIC SPHERE.
Don't tone police autistic people using strong language to talk about the impact of #ColorTheSpectrum and don’t remind us that “they just don’t know better!” it’s classic white moderate respectability politics bullshit and you’re going to drag us back into the last century.
Have y'all noticed what actually creates change? It's not telling people that they are already good but you have a suggestion on how they could be better. It's telling people that they are causing harm. They must see themselves getting bad PR & want to avoid it. get cynical.
Read 11 tweets

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