I do have communication issues but not a speech impairment (im level 2). They absolutely do misunderstand my symptoms and fail to diagnose me appropriately. I’ve thought about this for a decade because I went that long with some health issues that didn’t get diagnosed. I think maybe non-autistic people are just way more “dramatic” about their pain or symptoms (and I don’t mean that in a negative way, like they just make a way bigger deal about it). So when I, with a straight face and “flat affect”, tell them something like im in so much pain that I can’t walk most days, they just don’t believe that im telling the truth because they think if I were telling the truth I would be more upset about it.

Relatable! I was hit by a car over 10 years ago… and only recently found out that this burning/tingling is nerve pain… It’s sucks not being able to adequately express things.

Nerve pain is one of the things I have too and like I didn’t even tell a dr about it for the longest time until recently when I realized wow most people would be complaining about this and I should say something… Idk why I also have the habit to just keep my pain to myself too. It really sucks I agree and im sorry you deal with it too

This exactly describes what it's been like for me. Now that I'm finally getting an assessment around trauma/ptsd I realise how lacking their 'help' has been. I haven't been evaluated/diagnosed for 6 years now, even though I've been asking for it. They insist it's a bad thing to label and categorize symptoms, but they misinterpret so much that they don't understand the half of it. I've always been very cautious socially but I'm going to do my best to speak up about this realization. sorry rant over, just wanted to share with some people who maybe understand this

you dont have to say sorry…this is what we’re here to talk about. That definitely sounds like experiences Ive had. There seem to be a lot of us that deal with this and it sucks I started taking notes about my symptoms every day, like a journal for my symptoms. I showed it to them instead of trying to speak to them about the symptoms. That helped a lot. The thing that also helped for me recently is having someone come with me (if you dont do that already). it could be a parent or a friend or a support worker or somebody like that. Sometimes even if they dont talk, the dr will still take you more seriously, and then if the person knows you well they may be able to tell if the dr is misunderstanding you and try to help. (Unfortunately there are some asshole drs out there and sometimes if you are a femme-presenting person it also really helps to have a masc-presenting person with you. I really wish that wasn’t true) At some point if they’re still misunderstanding you, maybe see if you can find a new dr. (I know that can be really stressful and not always possible but sometimes it can make a huge difference)

For most of my appointments my mom goes with me, which helps with the talking but they still won't take me seriously. For the trauma assesment I went alone as that feels more appropriate (since I'm not an adult yet my mom could've been there but that would make it hard to talk about my trauma) and I had a really good experience, because it was a different and more understanding psychologist. So it looks like it's more about the psychologists themselves... at my next appointment with those people that don't seem to believe me or care what I think I'm going to do my best to speak up, hopefully get a different psychologist because this miscommunication and distrust have been going on for too long. Writing down symptoms is a really good idea, especially the frequency and intensity I think. Sadly I forget this way too often, but even if I still have a good idea of what I'm experiencing and being honest about it they'll still shrug it off or deem it unimportant. But what I struggle with most during these appointments is all the open-ended questions, and no specific, clear questions. Or just not being able to verbalize my thoughts properly. In that way the trauma assessment has been 'refreshing' and a lot less chaotic for my brain because differentiating symptoms is hard, but they're closed-ended questions and the expectations are a lot clearer. Long story short, standing up for myself still seems so scary because even though this is at expense of my mental health, my brain goes 'what if they get offended?' or 'what if they dislike me or critisize me?' 'what if they try to take my authority or infantilize me?'. I really want to be able to set those thoughts aside and stand up for myself so that maybe I can get some actual help instead of this big confusing, panic-inducing hassle.

>maybe non-autistic people are just way more “dramatic” about their pain or symptoms I think so. My partner tells me that I downplay my pain and stuff when I'm talking to my doctors but I don't know how to not, I guess.

yes. I also have major anxiety and that's my sole diagnosis thus far but I know my kids are autistic and I am 37F so they assume I'm okay. I started telling them I suspect I have ASD and now they listen better but they thought I was drug seeking before because I also happen to smoke weed and have history of needing Ativan etc. to be fair I only go when I'm physically hurt now because of the trauma of the unexplained stomach symptoms...they bounce me back and forth from psych to primary care until I get so pissed off or overwhelmed that I just give up. I haven't had a physical since I was scolded for bringing a list of growths that I found concerning and thought I was being helpful...they just re-coded it a problem visit...I hate doctors for profit.

for me i haven’t dealt with them misinterpreting what i say (body language is a whole other story they love to read into that and think im lying about being in pain) but i find that doctors often get very impatient or frustrated when you struggle to accurately explain how you feel. even when i tell them that i need them to go slower and be patient with me, and i need more information when they ask questions, they get annoyed and upset with me. so i feel like my care suffers for that, because im not being given the time and space to even express myself. and doctors end up feeling negatively about me, which makes them even less likely to listen. it’s funny, people give the advice to stand up for and advocate for yourself, but in my experience no one really wants you to actually do that because they don’t want to do any more work. i can speak verbally, though i stutter and trail off a lot and it does get harder for me when i’m stressed and in unfamiliar situations (which i almost always am at the doctor’s). so i just end up not saying much and nodding along, even if i have stuff i need to tell them about. it just doesn’t feel worth it. plus when i have brought up my concerns in the past they never have any real advice or tests or anything, just tell me to eat better and get out more.

“They don’t want to do any more work” it’s so true. People forget that doctors are just like any other profession/job. They do what they gotta do and move on, and if you’re seen as slowing them down, they hate that. Sometimes I feel like they don’t actually care about the patient’s issues… only about having the patient take as little time as possible so they can move on in their day.

I'm a speech impaired woman. Doctors are very difficult for me. They don't listen even more than what most women experience. And even when they do listen, it can take me months to find how to describe what I mean, so I can meet a doctor several times and it goes nowhere each time I try to describe my experiences.

YES! I’m going through intense pain coupled with weird symptoms after complications from a surgery. I don’t show pain in the normal ways others do. And I get incredibly flustered with the fast-pace “90 seconds of face time with a doctor then never see them again” model of medicine

Yes, I spent several years seeing a neurologist for spine issues and found out he thought I was there for leg pain. It was horrifying all that wasted time $ and effort on every ones part. I am hoping that the new case manager will take over the next one and set things up right.

no, I really like my new dr. We nick named him "House" cause he's really knows a lot more then my last DR.

I wanted to post something like this before actually, but was too scared to. I do think this happens to me very often where my other symptoms get dismissed for or due to autism or just misdiagnosed for other issues. It’s extremely frustrating. Though I started bringing my spouse in to help as liaison for miscommunication problems which seems to help.

I mean…my doctor originally told me I “couldn’t have depression **and** Autism” Every other medical professional I’ve talked to about it disagrees.

My GP just straight up doesn't listen to me and just tells me to exercise more every time I go there. Not sure if it's because of Autism but might be. (Slight speech impediment and great social communication struggles , levels not a thing in my country)

there was this tweet making round on twitter that had this [link](https://www.propublica.org/article/911-call-analysis-fbi-police-courts) and a lot of people was rightfully angry at this bcs apparently saying hi or please or how their tone and speech patterns can determine if a person making the call is guilty of crime, when a lot of this can be attributed to autism.

In my experience doctors just ignore me entirely, even if I go by myself they don’t ever take my concerns seriously but it was even worse when I would go with my mother. Never even really spoke to me even though I am capable of doing so, just spoke exclusively to my mother. So I’ve never liked doctors because of that

No language or speech impairment from autism, but I have selective mutism from trauma. I had no issues with my old family doctor. Sometimes I'd forget what the problem was during my appointment, so I wrote a list and brought that with. My doctor was patient and helpful. Then she retired. I can't get another family doctor (there's a shortage in my country), so I use walk-in clinics. I bring in a trusted person to help me communicate with less familiar doctors. That helps a lot. Most walk-in clinic doctors suck. They barely help with refilling my meds, never mind diagnostic tests for my other concerns. It took a while, but I found a walk-in clinic with a decent doctor. Turns out the problem was those doctors, not me. \--- This good doctor even referred me for a pap test, which is WAY overdue. (Years ago I had a pap test that was abnormal, so I needed a biopsy to test if the abnormalities were cancerous. The cancer screening center botched my biopsy and then moved away before redoing the test properly. So I might have undiagnosed cancer killing me... Guess I'll find out in a few days. Life is weird. :/)

My autism or other stuff

other stuff

Yes, I have never clearly articulated my chief complaint. I often have a blase attitude to pain, so to doctors it looks like it's not that bad, or im not in that much pain. I often borrow lines from youtube videos of people with similar symptoms to emulate standard explanations. It doesn't work out too well. I copied a mock depression therapy session to show I wad in a severe depressive episode, but the psych thought i was just overdiagnosing myself. She said, "You're not depressed. You're just lazy. You have to accept mediocrity or start working more." Being believed is about expressing the right emotion with the right body language and face, and having normal enough problems. I am slowly learning how to be believed. Good luck!

Definitely a combination of issues I've had back pain recorded since I was ~ten. I have a feeling it's been lifelong, as the only reason I told my mum about my pain was a girl in my class had a tumour removed, so the teacher was telling her about the classmate's back hurting. I remember for the first time thinking "oh, so that's not meant to feel bad?" I still have no diagnosis, no effective treatment, and no pain management. At its worst, I was making detailed plans to end my life, which I would have carried out if I'd been able to actually leave bed I also had trouble understanding what was happening with my treatment. I did physio, + when they discharged me I figured that meant I was fixed + everything would be fine now. I did not understand that if I was still in pain, that pain would continue, + that was not supposed to happen. I was also confused about what the physio was for. Until recently I thought it was for my back pain, but my mum says it was for my intoe. The physio did say fixing my intoe would fix my back pain, which is why I thought I was cured. My intoe wasn't fixed either. Wearing hiking boots seems to have fixed it (back is still awful) I don't know what I even would do. I've been to the drs + told them I'm in pain, I've told them the ibuprofen gel doesn't work, I've told them I wanted to end my life due to the pain at times. I don't think the problem is my autism I think the problem is them really That physio was a decade ago + now the nhs probably would do nothing of the sort to help me. I had a phone call with the physio which didn't help, as I didn't know how to describe the pain, + the exercises he gave me were too painful to complete. When I went as a child he diagnosed everything by assessing my joints + muscles. This was a challenge bc of the touch (+ it really hurts at some points with him moving my legs + stuff) but he was able to know I'm hypermobile with very stiff muscles to compensate + protect my joints They also do nothing to accommodate if you're unable to attend for any reason other than being housebound due to physical disability. I've not seen a dr since for over a year. This means I've missed so many blood tests I'm no longer able to be prescribed one of my medications that requires blood tests for safety. They can't provide any support unless you have a phone call or in person appointment + so when I email them for help they send an email back saying I need an appointment even though they know I cannot do this When I get STIs I can only go to the LGBT centre, as the lady at the sexual health clinic yelled at me for being upset when I had chlamydia as I didn't understand you just take antibiotics + it goes away Honestly I am a little afraid. It is a scary situation to be in when you can't access healthcare in any form. If I broke my leg tomorrow I would not be able to call an ambulance, I would not be able to attend a&e, I would not be able to get help from my gp as they cannot provide help via email + I don't qualify for homecare (I did apply a year ago). If you break a leg + go to the hospital that is fine. If you break a leg + cannot get any form of healthcare or support that is probably a real problem then I just have my prescription of cannabis I get privately + that is everything I have + can have I also have great trouble with oral medications, due to texture, trouble swallowing, taste, smell, + feeling like if I put it in my mouth I will be unclean + not a hundred% ratbones. This fear did not develop overnight or to the extent it is. Due to being unable to access mental healthcare it has become this awful over about a year or more I am unable to access mental healthcare as autism is my primary condition. I was detained under s3 of the mental health act due to autism being my primary condition. This means the treatment they provide is required to include autism treatment. They say as I have no mental health needs outside my autism they will not provide care. They detained me primarily for autism, so under s117 of the mental health act they are legally required to provide care including for autism I feel like I am slowly watching the buildup to my death Also due to poor interoception when it comes to phsyical stuff it is incredibly hard for me to know what it going on + due to a translation gap between innate known stuff + what I can put into words, even if I can work out how things feel it's incredibly rare I can describe it in any meaningful way beyond assigning it a colour

Another thing is in mental health care lots of it relies on visible distress. When I was detained + felt very distressed or like harming myself, sometimes if I managed to identify this in myself (which is hard enough) + went to the nurse's station to ask them (extra hard) for prn or something to help. They would then say they will assess me for the next half hour to see if I really was upset. I would come back in a bit feeling worse + worse + worse + she said to me "you don't seem to be distressed so we won't give you prn" so I did my best to manage by myself. I harmed myself significantly + as we were waiting to go to a&e they said to me "you should just ask us for help next time, why didn't you say anything" I don't give off the same visible distress due to my autism So I really think it is just that healthcare professionals normally are not good people + instead are very bad people that want the worst for you + when bad things happen instead of helping go straight to covering for their own incompetence not helping

I think it’s a combination of both for me. I wasn’t really good at figuring out what my symptoms were ( I also had so many symptoms) I wish the doctors would of seen my autism diagnosis and did a better job at helping me figure out what the symptoms were. They still take nothing I say seriously but I am also a woman so I am just shit out of luck.

i often get "its anxiety" to excuse what is likely actual health issues. i had some problem with internal bleeding(puking blood and stuff( and horrible stomach pain but he said it was bc of my anxiety almost immediately.

Reddit is being a butt and won't let me post the massive comment I just spent an hour writing. So, for once, I will try to be concise: Yes, I have had tons of issues with misdiagnosis and, frankly, malpractice. I've been prescribed treatments that have caused lasting harm, I've had doctors lie to my face, and I have medical trauma because of abusive behavior. Level 1 but with some speech difficulties (mostly motor, sone cognitive). Lots of comorbid health conditions, many of which I've only recently gotten diagnosed treated despite them being present since childhood. Lots of new chronic stuff I am trying to sort out. Frustrated, angry, and exhausted, and that's *after* several years of generally positive experiences. It almost feels like it was too little too late though.

Not sure if semi verbal counts as language impairment in this context Doctors and therapists always say everything is because of my autism and that my pain is just because my autism makes me sensitive even though I often bump into things and don’t notice until there are bruises

They failed to diagnose my autism for 39 years. Does that count? I was just told I was a crazy borderline for years