 For my book on neurodiversity-affirming therapy for autistic people, I want to include some information for providers about the medical issues autistic people are more likely to have. NONE of my training talked about this, and it could help people to know what they might want to ask their doctor to test for. Anyway please @actuallyautistic let me know what to include on that list? 49 comments
@dramypsyd POTS and EDS seems very common from what I have seen. @dramypsyd @actuallyautistic my big one is ARFID. not sure if you’d call it medical or not but it should be on the list  @dramypsyd @actuallyautistic I don't know if this is at all related to autism but I have sleep apnea and am prone to hypersomnia. @dramypsyd @actuallyautistic As a late dx'd autistic, I'm convinced my fibromyalgia is due in large part to sensory overload from masking for decades. I now have medical PTSD from not being treated because "we don't treat pain". So I'd recommend conditions often considered "psychosomatic" and cPTSD/medical PTSD @dramypsyd @actuallyautistic Fibro, Celiac, CFS, Early Onset Osteoporosis, EDS, MCAS, Misophonia, Multiple Chemical Sensitivity, POTS. Hyper (or Hypo) sensitive to touch, sounds, smells, bright lights, dim places, and more. Most autistic traits have a separate medical definition including terms for texture aversion. I have saved a lot of Pins that cover this on Pinterest. Even looking up things that go along with each of these would help. Ehlers-Danlos syndrome is fairly common for autistic people, as is problems caused by hypermobile joints. Apparently the majority of female autistic people have PMDD (pre menstrual dysphoric disorder) Because of anxiety, autistic people are also far more likely to have Irritable Bowel Syndrome, gastritis, and other digestive disorders We also have very high rates of insomnia, and other sleep disorders like night terrors. @Zumbador @dramypsyd @actuallyautistic all of the above apply to me! Yay - bingo! 😅 @atarifrosch @actuallyautistic Ooooh the med thing is good to mention too! I was thinking like EDS and stuff, but atypical med responses are also important to be aware of and NOBODY tells us that! @dramypsyd @atarifrosch @actuallyautistic yes atypical med response is important! And thinking about that, it sort of overlaps with high rates of alexithymia and poor interoception as well as atypical pain response. Health providers can get very puzzled if you don't know how you feel, or can't tell the difference between hunger and stomach pain and anger. Or if light touch is unbearable, but a broken bone doesn't seem to affect you that much. @Zumbador @dramypsyd @atarifrosch @actuallyautistic One time, I broke a rib wrestling, lost that match, won the one right after that, and then went on to audition and my agent said it was the best audition of mine he had ever heard @VoxofGod @Zumbador @dramypsyd @atarifrosch @actuallyautistic I walked off a dislocated shoulder, arm dangling out of the socket, but screamed like a BeeGee whose balls were in a vice when I stubbed my toe @devxvda @VoxofGod @Zumbador @dramypsyd @actuallyautistic Heard about these effects that some people don't feel massive pain, but never had experienced that myself. On the contrary, I react strongly to every kind of pain, it's one of the „sensory issues“ I cannot stand, like coldness or loud noises.  @atarifrosch @devxvda @VoxofGod @Zumbador @dramypsyd @actuallyautistic In case auf autistic people, pain is often ignored by doctors etc. Because there is not enough pain-related grimacing going on. Related: Weird pain scales that have different smiley faces for the pain. And what does "worst pain you can imagine" even mean? I can imagine a lot. In fact, the one time I experienced what could be called a 9 was what I would call a 7. @wakame @atarifrosch @devxvda @Zumbador @dramypsyd @actuallyautistic In the human lexicon of pain, it goes childbirth, kidney stones, diverticulosis, dislocated shoulder. I will never forget when I got my second diverticule as a 9-year-old. The pain was so great that I knew it was really bad and wanted to lay down on the sidewalk That pain is something I believe I was conditioned to be afraid of as a result, to this day. But without any question, psychological pain is exponentially worse @VoxofGod @wakame @atarifrosch @Zumbador @dramypsyd @actuallyautistic psychological pain is far far worse imho @devxvda @wakame @atarifrosch @Zumbador @dramypsyd @actuallyautistic I'm actually just paraphrasing Teresa of Avila, who said the same thing And as far as people who spent a life in physical pain goes, she's up there She writes about it interior castles. In the sixth book of it, she says 'you will know you are here, when God gives you a pain so bad you don't know if you will live or die But don't worry, it gets worse!' Obviously this is my extract, not verbatim @VoxofGod @devxvda @wakame @atarifrosch @Zumbador @dramypsyd @actuallyautistic @f1337 @devxvda @wakame @atarifrosch @Zumbador @dramypsyd @actuallyautistic Teresa is one of my top five heroes @wakame @atarifrosch @devxvda @VoxofGod @Zumbador @dramypsyd @actuallyautistic Pain scale is entirely subjective and pretty ridiculous. They acknowledge this but insist I still use it. Pretty prejudicial as well. I've broken bones and reset them without pain. I do not scream in agony with the worst pains. So when I mention pain, it is usually not taken seriously. @wakame @atarifrosch @devxvda @VoxofGod @Zumbador @dramypsyd @actuallyautistic It may be relevant that pain meds do not work for me. Opioids to not work at all on pain, except not more than 5mg codeine, which is apparently very suspicious to them. 5mg codeine is extremely effective for me. Anything more does not work. Toradol and apap burn like hell, though.  @wakame @atarifrosch @devxvda @VoxofGod @Zumbador @dramypsyd When I went in for gout, the doctor acted like she thought I was exaggerating, until she examined me. Then she told me I should be rolling around screaming, not limping into her exam room. @ScottSoCal @atarifrosch @devxvda @VoxofGod @Zumbador @dramypsyd @actuallyautistic @devxvda @Zumbador @dramypsyd @atarifrosch @actuallyautistic Most of my pain tolerance comes from a life of diverticulosis that was ignored by everyone I had an ankle surgery years ago and when they put the electrodes on my foot and told me to tell them when I was at a point of intolerance. The dial goes from 1 to 100 She kept on saying 'are you okay or are you okay?' I topped out at 47 Then a little while later there was older dude and a kid that got their electrodes after I did... @VoxofGod @Zumbador @dramypsyd @atarifrosch @actuallyautistic The IRA blew out my knee caps for selling in the wrong part of town and I didn't feel a thing. But the dentist poking me made me cry /jk @devxvda @Zumbador @dramypsyd @atarifrosch @actuallyautistic 😎🤠🤓 Yeah u don't sell anywhere but in the northern six counties :-) @VoxofGod @Zumbador @dramypsyd @atarifrosch @actuallyautistic I'm just going to sing The Fields of Athenry louder /s @devxvda @Zumbador @dramypsyd @atarifrosch @actuallyautistic My cultural and political acumen were completely spent with my lame joke, so I don't get the reference :-) @VoxofGod @Zumbador @dramypsyd @atarifrosch @actuallyautistic Irish song about a guy who steals corn from the British to feed his starving family and is sent to Australia as punishment. You know, just normal things. @devxvda @Zumbador @dramypsyd @atarifrosch @actuallyautistic Well, normal for the British anyway 🙂 Just finished watching a BBC thing called poldark which was not bad, as far as populism goes, but there's always that hook at the end that 'you're not really populous unless you like the crown?' @atarifrosch @dramypsyd @actuallyautistic When I finally started medicating with cannabis, that was the beginning of my entry into the world as a human being not as a person in pain, both emotionally and physically @VoxofGod @atarifrosch @dramypsyd @actuallyautistic here to say amen to this. Slowed me down enough without dulling my senses further than the gaps I didn’t know about yet, to question my impulses and, with discussion and reflection, understand and live with intention Maybe auto-immune diseases that affect the joints, other neurodevelopmental disorders, like ADHD or any dys- (dyslexia, dyspraxia, dysgraphia...), migraines, coeliac disease...? Endometriosis for folks with a uterus? + everything that was already said ^^ @dramypsyd @actuallyautistic One huge thing is that reaction to meds is, to put it mildly, atypical. Also that it is important to listen. Like, literally listen. I have been cut off in the midst of describing something, with responses like "not possible", "ridiculous", You're making it up", etc. Not a way to establish trust.Often times autistics will research symptoms and meds before consult in order to understand them. Demanding blind faith and trust is very bad. @homelessjun @actuallyautistic Ugh I hate providers who don't believe their patients. "That's impossible" Ok well I just told you it's happening sooooooooo @dramypsyd @actuallyautistic Can't even describe something fully. Another thing is that they often jump to conclusions before it is completely described, and their conclusion is too often wrong. @dramypsyd @homelessjun @actuallyautistic My GP doesn't like that I want to read the data sheet on medications, and have opinions about them. Hey, it's my body, it works pretty well for me, most of the time, before you start me on something you say I'm going to be taking for the rest of my life, I want some information, and I'll weight the pros and cons and get back to you. @ScottSoCal @dramypsyd @actuallyautistic I have angered more than one doc by objecting to meds that would have been damaging or life threatening. Using the same info the docs are supposed to use, and that they call, "Doctor Google". @homelessjun @dramypsyd @actuallyautistic I've also had atypical reaction to medicines. Like the famotidine that sent me into a deep deep depression. I took it for over a year without problem, and then it whacked me. Fearless Impala (ex-gf) also had atypical reactions but she suffered from schizophrenia. She had a great ally in me, but she pissed it all away. I was ready to go to the bat for her, given my own experiences. @homelessjun @dramypsyd @actuallyautistic At least now Pretty Impala (current gf) benefits from some of the work I had done for Fearless Impala. She's coming to my place tomorrow and **she asked** that we look at a new psychiatrist and a therapist for her. I am positively elated. She lost her therapist when she graduated. Not sure what happened to the psychiatrist. I offered to be an ally if the Dr does not believe her. Run all over that young girl and you're going to face an angry older man. @dramypsyd Insomnia is a common one I hear from my autistic friends and I experience myself. |
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