So I am finally able to express insecurities about my body that I’ve held onto my whole life due to, you know, feeling like a singularly fucked up freak which unfortunately is a common experience for us autistics and neurodivergent folks. I’ve had some recent experiences that have me feeling pretty down about my body and I guess I want to write it down and get some validation from others that may share some of these experiences or have some guidance or information to understand myself better. Unfortunately, some of these “quirks” lead to some serious social avoidance behaviors and anxiety because I feel like I have no control over when my body seems to decide to just stop working properly. I just want to understand better why I, for example, can seemingly randomly lose my coordination and take an embarrassing tumble or knock over and break things; why I can overheat and start sweating profusely so easily; why my reflexes can be so reactive and I get jumpy or overreact, like having a gag reflex that can cause me to puke or spit up over nothing; why I can sometimes be very sensitive to pain or not feel it all; why I have IBS and other stomach issues that don’t seem to correlate to any particular food or activity; why I have nerve pain in my legs and restless legs; why I can sometimes feel the constant urge to go to the bathroom or have embarrassing episodes of sexual dysfunction. I hope this post doesn’t come across too much like a “woe is me” thing, just trying to understand myself better so I can stop feeling so insecure about something I can’t control. How much of this is related to general executive dysfunction that is a hallmark of autism and ADHD? Does anyone else have similar experiences? Is it possible some of this is completely unrelated to neurodivergence? Do others also feel this way about their body?
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I’m just paying it forward, I would not be able to understand my own humanity, let alone my place as an autistic individual, without reading and learning about the experiences of others who have shared uncomfortable and potentially embarrassing (even if it shouldn’t be seen that way) truths about their lives to uncover the full breadth of human experience that our rigid social system under capitalism keeps hidden. People belonging to all sorts of marginalized groups whether it be gender minorities, sexual minorities, disabled folks, etc. deal with so much that that they feel like they have to hide because of how little society tolerates deviance despite the fact that these experiences are near universal; everyone deviates in major ways from the prescribed norm.
In truth, what I deal with is genuinely quite mild compared to the situation of many others with autism and other forms of neurodivergence as many experience similar or worse symptoms on a much more frequent basis with much more severe impacts to their lives. I am very low support needs, and if you knew me in person you would probably be none the wiser that I have these experiences, and even if you witnessed me having one of these situations you would probably not think it is nearly as big of a deal as I am perceiving it to be. However, it is still disabling for me and has serious consequences on my ability and willingness to interact and commune with others (and work, unfortunately), despite me having a significant desire to do so.
I appreciate the kind words and support, and I am really just hoping to lessen the stigma for myself and others for the betterment of our experiences and livelihoods.
I got all of this. My clumsiness is for sure dysfunction based on my findings though. I’m big on bumping into things but it’s usually when I’m walking. Thinking. And looking at my phone. Aka lost in the sauce. Lol
The overheating is a new thing for me. I’ve found a few of my shirts make me sleepy as fuck and it’s due to that extra warmth as fast as I can tell.
Lol yup, it seems like you got everything under control until you bump into something that your own proprioception told you was not there. Very frustrating
I related so much to everything you wrote. ❤️ It sounds like we share similar struggles, and as much as I hate knowing anyone else is suffering, I also appreciate knowing that I’m not alone, so thank you for that.
You had some specific questions and specific symptoms that I think are worth discussing because it sounds like you’re chalking a lot of them up to autism & ADHD when they might not be.
Easiest questions first:
Does anyone else have similar experiences? … Do others also feel this way about their body?
Yes and yes! My body is confusing af and unreliable.
Is it possible some of this is completely unrelated to neurodivergence?
Sure! These sound like symptoms of known comorbidities to me, though.
How much of this is related to general executive dysfunction that is a hallmark of autism and ADHD?
Maybe some, like
can seemingly randomly lose my coordination and take an embarrassing tumble or knock over and break things;
I do this too, maybe because I will get distracted by a thought and suddenly be less careful with my body. I stumble coming up the stairs from my basement laundry area to my living area pretty much Every Time (usually in the same area of the staircase though not the same stair) because I start thinking about what I’m gonna do when I get up there instead of “be careful on stairs” and I fumble the next step.
Maybe it’s executive dysfunction, maybe it’s a combination of that and EDS (more on that later)
why I can overheat and start sweating profusely so easily;
This isn’t executive dysfunction. Could be EDS or something else.
why my reflexes can be so reactive and I get jumpy or overreact, like having a gag reflex that can cause me to puke or spit up over nothing;
These aren’t executive dysfunction and might be unrelated – jumpiness could be PTSD, and difficulty swallowing can be PTSD, EDS, or other things.
why I can sometimes be very sensitive to pain or not feel it all;
Me too; afaik, this is a common autistic experience.
why I have IBS and other stomach issues that don’t seem to correlate to any particular food or activity; why I have nerve pain in my legs and restless legs; why I can sometimes feel the constant urge to go to the bathroom or have embarrassing episodes of sexual dysfunction
These aren’t executive dysfunction. They could be EDS as well.
Questions for you - do you get cut or bruised easily? Any history of sprains, strains, or dislocations? How flexible are you, relative to other people? Can you do this?
These are my actual thumbs. 👍👍 If you’re easily cut or bruised and you’re also more flexible than most of the people you know, you should look into EDS.
What the fuck is EDS? It is a “rare” genetic condition that causes defective collagen production, which sucks because collagen helps hold your whole self together, from muscles and ligaments to blood vessels and organs to the skin containing it all:
(screencap from link)
It’s “rare” imho because it hasn’t been recognized for long and because diagnosis requires getting a doctor to believe your weird symptoms could be connected and then (probably) order genetic testing ($$$). As more people learn about it, I expect it to go the way of autism and “suddenly” be much more common because more people are being tested, and someday the prevalence of EDS will be a lot more than 1 in 5000 people worldwide.
Since it’s more common in AFAB folks and often comorbid with autism & ADHD, which are both underdiagnosed in the AFAB community, I kinda expect that more AFAB people getting diagnosed with autism & ADHD will result in more people in general eventually being diagnosed with EDS as they start asking questions like you’re asking here, realize there might be answers, and spread the word.
I think my experience of my disability – thinking that everyone has the same problems but copes better, then realizing these difficulties aren’t universal, then finding out they’re connected and that group of symptoms has a name – is common, and more autistic people asking questions about these health issues they’ve had forever will result in more people being diagnosed with EDS and other comorbid conditions.
So, our mutual clumsiness could just be the result of inattentiveness caused by executive dysfunction, but it could be exacerbated by floppy ligaments that require extra effort to keep in place. Am I tripping as I come up the stairs only because I’m distracted, or because I’m just distracted enough to stop making that extra effort required to make my floppy ankles keep my feet up?
Here’s the list of signs and symptoms of EDS from NATOpedia. I think if you skim through it with all the things you’ve mentioned here in mind, you’ll see why I’m bringing it up.
I’ve got an appointment to get checked for it in a couple weeks. If that doctor dismisses my concerns, I’m gonna have a good cry and then try another. If you’re also relatively flexible and fragile, maybe you should get checked, too.
Random tidbit thought:
why I have IBS and other stomach issues that don’t seem to correlate to any particular food or activity
In addition to the gastrointestinal issues EDS causes, it can also cause Mast-Cell Activation Syndrome, which is basically an inappropriate allergic reaction – your body freaks out over something it shouldn’t. Since stress and other environmental factors (like temperature) can affect MCAS symptoms, it is entirely believable to me that you wouldn’t see a correlation to particular foods or activities; it might take the right combination of stress and other factors to set the stage, and how strongly those are affecting you might cause differences in whether certain foods affect you. (When you’re at a high stress level, anything might set it off, but with lower stress it might be harder to set off.)
Of course, all your random symptoms might not be EDS and might be totally unrelated to each other. I just saw enough overlap with my own symptoms and the stuff I’ve been reading about EDS to be inspired to write you an essay on the subject, which I hope you found helpful. It was a good and necessary distraction for me, so thanks for the opportunity. ❤️
Thanks so much for writing this up about EDS, I had never heard of it before! I don’t think this is what’s going on with me as I don’t have any of the hyperflexibility you mention and I don’t get cut and bruised easily. I’m sorry to hear about the struggle and I hope you can get some medical support
I suspect that my nerve pain, bathroom sensitivity and IBS, and sexual dysfunction are related to some neurological issues as I have a family history of fibromyalgia which I believe is comorbid with autism and ADHD and thus makes me feel like I’m likely to be diagnosed with it. Unfortunately, it is a diagnosis of exclusion so it’s not really well understood and I don’t know how much I have to gain from engaging in the US healthcare system as it is both very unwelcoming and paternalizing to ND folks and infamous for being unable to do fuck all about the pain epidemic. Hoping we can both find some answers.
Do you do any sports or other physical activity on a regular basis (2-3x/week)? Coordination is a skill you learn and maintain, not something you’re born with.
I am on the spectrum and yeah we have access to a lot less information about our current body & mental state. There are just various cues you have to pick up over time, and various approaches you have to try (combinations of clothes, hydration, length of time outside in whatever temperature) then see what the results are so you know what will probably lead to some outcome in the future. This takes a long time; I’m in my mid 30s and am still sorting out what combination of things can keep me from getting terribly sleepy after being outside for longer than ten minutes on a hot day.
I’m actually very coordinated when it comes to athletics… Until I’m not. It’s very frustrating
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Dang I’m so sorry, I’m fortunate enough that my IBS isnt as severe as yours but I can definitely relate to having to curtail certain aspects of my life to get around it. But yeah, so frustrating to do all the “right things” to manage it and your body can still decide that actually you have to shit RIGHT NOW for no reason that keeps you at home to have to deal with :/
I get this. For me personally it has always been pretty much being checked out from my body when it comes to basic stuff like pain, the need to pee, hunger etc. I have trained way too hard, dieted too hard, walked around septic like it’s nothing and ignored pain that likely never was the “high pain treshold” that I though it was. I never get hungry, I also don’t really get sleepy so always been a night owl and work has been very hard.
I have also had the “stress GI track” since I was a teen, all the way to an ulcer at age 18 just from stressing about my exams in high school. And the very very sensitive gag reflex I have too, never could even watch people make mock gag sounds without feeling sick.
And being nervous always has made me feel like I need to pee. This afaik is a very universal thing, but most of this other stuff is also very much part of the neurospicy experience.
I forgot how to walk mid-step once. My leg just wouldn’t move forwards
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