So this could be why I wet the bed until my teens, and how I can read an entire book in one sitting, then realize that I haven’t eaten, drank anything, used the toilet, etc.
I often have no idea how quickly I need to get to the bathroom until I stand up from my desk. Especially true if I’m researching something on the interwebs.
My mum can read a whole book in one sitting! And she hasn't a diagnosis of ASD! 😂I do have a diagnosis but I literally can't do what she does with books
When I'm feeling off or anxious I ask myself out loud what I may need as if I were asking a friend. It feels kind of silly but verbalizing helps me a ton and in the end that's what matters. "When is the last time you ate, could you be hungry?" "How about we sit down and cuddle the cats for a while?"
That's a great idea, I'm gonna have to try it. I've already tried it when I play competitive video games, where I say out loud to myself what I'm about to do, to spot if I'm making a bad plan of action, but never thought to do it irl
When blitz cleaning decades of storage under our family home, my son asked me if I'd had anything to eat or drink. Told him I'd come up for a late brekky soon. He replied that it was 2pm 😂
@@suecollins357 I always take my breakfast after my job, round 17h (5 PM)... if I eat before that, I get immensely sluggish... slow and depressed. I also am never ever hungry before 16 - 17h, for some odd reason. 🤔
@suecollins357 Yeah I do that. I get to working on something and then the next thing I know it's afternoon and I've missed 2 meals and I'm starting to feel lightheaded and shaky. @Vicious-Spiral I really hate eating in the morning. It's so difficult for me to choke down "breakfast". But I'm legally-blind and ride my bicycle everywhere. On the days I ride to the college it's 20 miles away and I've found if I don't eat it's bad, so I have to force-feed myself in the morning just so my body has calories to burn. Sometimes in the morning it feels like there's a lead ball in my stomach, and I'll drink some water to make it go away, but I hate eating in the morning unless it's cold pizza or something like pasta salad.
@syberphish I don't eat, but I do take a lot of supplements in the morning, in pillform, and easy to swallow down with my morning water. So I make sure I have the essentials like vitamins, minerals, omega's and many others. And when I arrive at my hated, brutal, heavy physical job, I drink half a litre of semi-skimmed milk. Ad fundum. 😂 something like that might help you too... milk, for me, is a miracle drink. But for me, the actual hunger for food, it comes only after 5 PM. After work, the pain and hunger arrive, punctal as a Swiss watch. As a child, I was already unable to eat in the morning. No breakfast, as far back as I can remember. After puberty hit me hard, lunch-hunger dissapeared and so I ended up only eating after school, never before or at school. This - over time - has formed into a weird thing: if I do eat before I feel hungry, it really makes me depressed, tired, angry and ruins my day. It can even lead to implosion or worse... Even eating a single cookie or a few peanuts or a fistfull of popcorn will have this weird effect on me. So "breakfast", "brunch" and "lunch" are completely out of the question for me, alas. 😢 It makes dinner taste thrice as good though, the only advantage of this, I guess.. 😅
So do you eat all your day calories in 1-2 sittings? I wonder how to keep body well fed, and preferably, with healthier food too. I do feel hunger ok, but I struggle with eating enough calories already and struggle to imagine how you make it work😅
@@SparkofyourheartYes, I eat all my calories in 1 sitting: dinner. With the exception of the milk. So dinner is a lot for me: about 3000 calories. After dinner, in front of the TV, I snack raw broccoli, raw brussel sprouts, fruit, raw coal, sea grass... and a lot of supplements.
Just got my late diagnosis on the 11th. Your channel was suggested to me and I've enjoyed it. I'm learning language for what has always been just ambiguous feelings inside me.
Thanks for your hard work on this subject. I've experienced tooth abscesses that nearly killed me because I didn't feel the pain. As a cild, played tag with a broken collar bone and an ankle fracture on separate occasions. Soft tissue seems to register pain normally. Bone and teeth, not so much. Experiencing hypo and hyperthermia due to reduced sensitivity. On the other hand, hypersensitive to emotional states of others.
Me, too! I've had near-death tooth abscesses and other raging infections that landed me in ER, but I experienced no early symptoms. I felt fine, then suddenly, I collapse. I've also had alcohol poisoning on 2 shots, because I'd forgotten to eat for over 24 hours. It takes days/weeks/months/years/decades for me to sort out how I'm affected emotionally by what I've experienced in social interactions; on the other hand, I've been told dozens of times that I perceive how someone else thinks/feels more clearly than they do. I've thought this was a result of growing up in fear of a raging dad, but I may have developed this imbalance anyway. I do know that fear of my dad's violence made me hyper-vigilant to the moods of others.
I also almost died from a pesticide spill and had to be on a feeding tube (jtube) for nearly 3 years. I had to teach myself how to eat again. I put myself on a strict schedule and finally gained weight back
7:42 This is my issue. I fell down some deck stairs and thought I broke my ankle. I went to a medi-clinic and got an x-ray. The doctor said, “No break. Just a bad sprain. However… the x-ray shows you DID break your ankle some time in the last 10-12 months. 👀
I wouldn't be surprised if this happened to me too. I know for a fact I've hurt my ankles pretty bad, but they usually stop hurting after a day even when they're still swollen. I'm 41 and I still wake up with bruises or deep scabs that I have no idea how I got them. It's such a strange phenomenon that we can't feel certain pain.
I was in the hospital for some reason and a doctor looking over some xrays asked me when I broke my neck. And I went "...excuse me?" He looks at it and points and goes "yeah, right here, you very clearly broke your neck at some point". Probably why I been having a ton of neck pain....
Same here. I injured my ankle. I thought it was just a bad sprain. After walking around living my normal life for 2 months, I wondered why it wasn’t healing. M doc sent me in for x-rays. Turns out it was a fracture with more or less a dozen small bone fragments stuck under the skin. Much to m surprise!
@@JHixon-bi8ok I did notice that my right ankle got "bumpy" and it now sticks out farther on both sides than my left ankle. I didn't put 2 and 2 together because it didn't hurt that much.
This was a very relatable discussion😅 A paper cut will have me in meltdown mode for a full day, but one time I literally broke my finger in a moment of adrenaline and only noticed 8 hours later when my finger was huge and purple 😆
When I'm hyper focused, I only get my body signals when they switch over to pain. Sweaty and shakey? Crap hands not working right. Need to eat. Kidneys hurt? Oh crap I need to pee. Bladder gave up on me and sent the signal to my kidneys. Then I get up and my legs are like "Guess who else you've been ignoring for six HOURS!?!" wobblewobblestumble
Oh wow! When I got my first pair of shoes after a few days wearing them my mom noticed a hole in my foot! Turns out there was a tack or nail in the bottom! I never fussed. I wore them for hours each day learning to walk in them. (1978). I have fibromyalgia since age 22 but at age 24 nearly died from my gallbladder, liver & pancreas all being infected. I needed 2 surgeries & 9 days in the hospital yet earlier that day I took my 15 month old & her 5 yr old sister to the beach. My back hurt a bit. I do not have a formal diagnosis yet but can add this to my very long list of symptoms & evidence! Thank you.
Routine is really the only reliable way I have of actually staying fed, hydrated and getting enough rest... It's more difficult now as life seems more chaotic and pressurized now 🤔🙄
Me: ... My husband: Are you hungry? Are you thirsty? Me: uhhh... My husband: Loads me up with fruit and water. Me: ohhh right I am hungry and thirsty.🤦🏾♀️
I was work once and really hungry but not noticing it. Then deer walked by outside and my mouth salivated big time, the deer started looking really tasty. I've had venison steaks cooked to perfection. Not like bugs bunny cartoons where Yosimite Sam views Bug Bunny as roasted rabbit. Just the idea of that steak and my hunger is made aware.
Def the same as you if I hurt myself, big reaction to something small, really small reaction to something bigger and will quite often notice bruises on me with no idea what I did.
I've recently been diagnosed with emotionally unstable personality disorder and I also have autism. This video really helps me in directing and understanding my own feelings. Thanks for this upload 👍
I find it helpful to relate to others on this topic even though I never received other diagnoses outside of chronic PTSD and all these autoimmune disorders. When I’m in pain I have no idea what I’m feeling. If I’m in an emotional flashback it is like living in a very small world where everything is overwhelming sensory wise. Sometimes I try to guess what other people are feeling and that messes with having interception, because of paying so much focus on outside noises and people’s moods.
Had discomfort for 6 months from a weak, cracking wrist before seeing a doctor to have it x-rayed. Required 3 months of even more discomfort in a cast up to the shoulder, to finally have the fractured wrist heal.
This resonates so well. I've taken to saying "ow that hurt" when i bump or scrape something just to place a marker in case i notice I'm bleeding or muscles aren't working well later.
Oh man oh man oh man. I honestly started this video not expecting to match up with anything but maybe the hunger thing.... and ended up relating to EVERYTHING. Can't tell I'm hungry until I'm nauseous and my head hurts, don't know I'm dehydrated until I have cotton mouth and my lungs aren't working very well despite my inhalers, I usually don't know I'm hurt unless I get like 50 tiny splinters at once from my firewood, otherwise nothing really hurts except loud sounds. A couple years ago, I didn't know I was having gall bladder issues until they were literally suddenly infected and I had to have emergency surgery and the ER morphine was only working for about 10 minutes at a time. I can't even recall how many times I've cut myself pretty bad and I've just looked at my bleeding hand trying to figure out how the heck that happened and I didn't feel it. When I was 10, I stepped on a broken glass bottle in the lake, and it didn't even hurt, I only freaked out because my foot was bleeding a lot. The only thing I notice is when I have to pee, because between diabetes and anxiety I have to pee like 20x a day. My daughter, who is also autistic, needs constant reminders to eat and bathroom stuff and drinking. She does better in some aspects, but she is over-sensitive to pain (little things hurt her, whereas I don't feel most pain). We also both don't go to sleep until we're literally falling asleep doing stuff. I literally have to have alarms set for lunch and dinner so we don't forget to eat. And neither of us feel the cold very well, we have high cold-tolerance and kind of low heat-tolerance. There are a lot of times my daughter would seem to get her hots and colds mixed up. And I have read each Harry Potter book in ONE sitting each, I think only breaking for tea or bathroom breaks. In fact, I still tend to read books in one sitting. I literally had no idea these were autism things. I just thought everyone gets carried away sometimes, and I thought not realizing we got hurt came from being a kid and getting carried away again. I had NO idea these specific things were specific to autism. I don't even recall these things being on the official autism diagnosis questionnaires.
Thanks for another great video Orion! Sometimes when I tune in to my body it actually feels very uncomfortable. I guess the distress eases with practice
I recently discovered about introception thanks to an audio book I bought - “self care for autistic people”, by Megan Anna Neff. She talks about the hypo & hyper sensitivity in relation to introception. Tho I really do appreciate you creating a video about this cuz knowing this has helped me a lot and I know it will help loads more people! Personally I’m terrible at knowing when I’m thirsty and I will either eat to a schedule, not eat for a while or over eat (for comfort). I’m terrible at reading my body’s bowel signals and I’m generally terrible at being able to tell what I’m feeling til I’m on the verge of a meltdown or recovering from one. I won’t feel when I’ve had minor cuts or burns til later on, but Labour with my daughter was absolute agony to the point things just weren’t moving forward, even after 5 days of agonising contractions, cuz the pain was just too intense and non-stop. It does make me wonder if this is why hayfever hits me so hard… 🤔
I’m not autistic. I’m just different I thought probably because of childhood trauma? So it’s ok, right? I’m strong, very focused, workaholic, who loves nature, animals, my kids, my pets, my couple of friends. Couple of years ago my daughter in law suggested to my son that I’m on spectrum, same as my son. She has several family members in different levels of functioning. I dismissed that. Not because I have a stigma or because it came from my daughter in law, but because no one in health care environment suggested that to me - I live in this environment my whole life. However, couple of months ago we were talking with my son, I was updating him on my latest events- we live in UK and Canada . Suddenly he told me “mom, it’s so autistic “! I started to look into the topic. At last TH-cam offered me one of your videos - instantly I listened about myself. Again and again. Very strange. I’m still in doubt, but I started to adjust my behaviour and attitude to myself. So far it helps. Thank you.
@@tatianaborzhemska3164 Hello, I had a lot of the same doubts about being Autistic for 20+ years. Being diagnosed ADHD Inattentive was a catalyst for the last 3 years, and in trying to figure 'me' out lead to the discovery that being ADHD/ASD fits better with me. The thing that made me feel better was reading 'Normal people don't think about being Autistic for years, they don't worry about it at all'. In short, untraumatized ADHD and Autistic people don't exist. If it looks like zebra, acts like a zebra, don't assume that it's just a broken horse.
I still doubt my very late diagnosis at regular intervals - ADHD, not so much, GAD not at all. What I can say from the large amount of AuDHD discussion I follow is that I “quack like a duck” in so many ways, and as you describe, it’s helpful in starting to understand myself. Whether I am clinically autistic is almost beside the point in some ways, because clinical diagnosis is based on an impairment model, and while neurodivergent traits are lifelong, levels of impairment can increase or decrease depending on health or life stresses. This is how they used to conclude that kids could “grow out of” autism, which is not what happens. But in addition to learning masking, I’ve seen a lot of people talk about how they started to present with more obvious “autistic symptoms” (burnout, meltdowns, dysregulation) when they got older, or circumstances got tougher, or coping strategies started to exert a greater cost. Since crashing and burning and getting diagnosed at 60, I’ve learned I’m hardly alone in that. My impression now is that one reason for learning these things about ourselves is to figure out what we need to do to cope with our personal abilities and limitations, and to understand why we function the way we do. Because the notion that if we made it to adulthood and are managing, that things could not possibly get worse as we age is a fallacy. What I *think* I’m starting to figure out is what are trauma triggers and what is the way I’m wired. It’s tricky, not least because I’m kinda alexithymic, but I am maybe starting to tell one from the other. It’s hard, because I was brought up in an era when it was assumed that anything a person had trouble feeling was due to willful suppression. I have some of that for sure, but there are also places where it feels like I have odd connectivity, neural pathways that don’t function like parts of my brain expect. It feels different somehow, and if I tease it out I think it will make it easier to deal with the legit trauma, because I won’t be confused by false flags. And addressing trauma is a different strategy from addressing what might be a bit like a learning disability - or unusual interoception. A bunch of thoughts.
7:27 For me, pain is very intense. Yet if I dare speak up, I’ve had multiple doctors tell me that I’m wrong and dismiss me altogether. At which point I promptly shut down, too afraid if I’ll say something else ‘wrong’.
Thank you so much! Don’t see a lot of info on this and I appreciate that you spoke about it. I’m curious about the autonomic nervous system. How bad can it get? I have tachycardia type issues that no one seems to be able to diagnose. I saw a blurb of a study about tachycardia issues in autistic people on pubmed, but need further info and I don’t know where to find it. Any ideas? Thank you!
Same, turned out to be Postural Orthostatic Tachycardia Syndrome (undiagnosed for 45 years). British MD Jessica Eccles is studying it some, and Pots UK has great videos by her and others. There is an easy test, NASA stand test, you can do at home. MDs in general know nothing about it, at all, very few specialists, lots of gaslighting in my experience. Videos of talks by Dr Blair Grubb, David Systrom, Alan Pocinki, a few others, have been most helpful. Dysautonomia International has good info too. Best wishes
Good pronunciation of tricky words, Orion! (66-y-o- retired biochemist here) Very helpful. I've always had touble with noticing hunger and thirst, but I've noticed my interoception getting worse the last few years. Anyone else notice this, or is it just aging?
I'm 47, and not introception, but other "symptoms" do seem to worsen over time... eg. The rate of implosions increased, both in time and in intensity. I use a scale to describe my state to my best friend. Level 1, extremely rare: clear thoughts, hyperrrrr functional and "happy."" Level 2: my usual "normal" state: relative clear thoughts withe a haze over it. Still highly functional, still happy. Level 3: my thoughts start to get more and more mixed up and the haze becomes intense. I can still function, follow conversation, and speak. But errors will appear in my speaking, because I pick wrong words in my answers. So my speech declines, and I feel unhappy. I get angry with myself and the stuttering starts. From here, it doesn't take much to go to Level 4: I don't understand my own thoughts because they become abstract, conversation becomes impossible, because I don't understand what is said and am incapable to speak anything but ununderderstandable mumbling. At this point, I'll send a pre-made text to my best friend: "4!". He knows what's up and comes over, to check if I didn't go to Level 5: complete insanity in my head, and I can't safelt walk or simply talk, so I go and just lay down somewhere: bed, ground, couch, whatever. Moving around is very dangerous for I have no clue what I'm doing. Recently: Level six has appeared: losing days, without memory. I wake up in Level 3 or 4, thinking it's Thursday, but it's actually Saturday... that one is new! 😢 luckily my friend comes to check on my wellbeing regularly after sending the "4", otherwise... 😢 As a child, there was only Level 1, 2 and rarely 3. Puberty: 3 becomes more often, and at age 16 level 4 suddenly appears. In my late 20's Level 5 suddenly popped up. And 3 years ago, I had to up my scale to Level 6. I REALLY HOPE THIS IS THE FINAL LEVEL... 😢😢😢 SO, YES... for me some things worsened by aging. I can put it on a timetable even!! 😢 At level 3,5 as we speak, so forgive me if there are wrong words or typos... I always try to edit them out immediately or later on. That's why most of my messages are edited...
I broke my leg in 3 places a few years ago riding a dirt bike. I heard it broke, felt the 'pop' inside my leg when it broke but wasn't sure I actually broke it. I had to try to move it before I knew it was broke. Never felt like more than just pressure. Freaked the nurses out when I moved it in the hospital for a better x-ray image. Couldn't figure out why they were all so surprised but ah, yeah. This explains it lol. I've never felt pain from bigger injuries. Thank you for explaining this in this way, helped to finally make some of the things I hadn't quite wrapped my head around make sense.
I have lost times of the amount of times where I've somehow gotten hurt and felt no pain. Only becoming aware of the fact that I was injured because I felt something wet (ie. blood).
I can so relate to the pain one. Or lack of pain. I costantly notice cuts and bruises that I have no idea where it came from. Also, I remember I walked home from school decades ago on what I thought was a sprained ankle. It was actually broken!
My sensitivity to pain fluctuates. I'll often become injured and realize I'm bleeding and have no idea how I hurt myself. But then things like tooth pain or kidney stones... oh my gosh, I was in the ER just screaming in pain for hours and they mostly ignored me and treated me like a junky. Which is a terrible experience when you're in ungodly pain.
Nothing quite like a Doctor seeing drug seeking behaviour because I'm in too much pain. Even worse is the opposite, where I must be faking it because because of flat effect and low emotional output. I am usually very good at masking, but it rarely seems to be working when it comes to doctors and nurses.
Oh my god, kidney stones. I have been told by women who have had them that they are worse than child birth. I can believe it. Don’t get me started on emergency rooms. I’ve been there a few times in the last 5 years for family members, and honestly I feel like I’d rather die than go there myself again. Not that they got me in quickly when I was thrashing around with the kidney stone almost 20 years ago. I have few kind words for in patient care either.
@jimwilliams3816 no one ever really taught me much about how my body works, and what not to do to it. I never understood about things like staying regular. I would often go several days and never thought anything of it. It wasn't till the kidney stones that I realized just how little water I was drinking, and how much better my body functions when it gets all the water it needs every day. I always found drinking water to be incredibly boring. Lived on sodas and juice. But I always loved Pelegrino and Perrier. Not as a kid, but they grew on me. So now I keg my own soda water in the fridge. I have a 5gal "korny keg". I like the fizz, I like being able to adjust how much co2 is being used. And I love drinking it. So now I go through 5gal of water every 7 days, like clockwork. A little less in the winter. When my co2 cylinders all run out, in the intervals of weeks before I go get them refilled, I'll start feeling my right kidney ache and realize I'm low on fluids.
Ugh I hate that. I do my best to not make noise when in pain. I don't want to bother anyone. I downplay it as much as I can. And that's not considered normal. Then the major signs hit like fainting and vomiting. Then I disassociate because my brain does that when I'm in an intense panic/pain state. And yeah the voice thing. I sound like I'm having a stroke when in intense pain or panicky. Can't control tone or volume at all. Thankfully I've been able to rely on family and friends when in danger to translate the pile of nope that is me. But I hate not knowing what's going wrong. I can handle pain if I know what's wrong and that it's not compounding damage. Sighs. Not drug addicted. Just holding it together so I'm not a bother.
@@Tormekia I totally agree with you about not making noise and bothering people when I'm in pain. I was in pain to the degree that I was rolling around on the floor of the bathroom in the ER, screaming, hoping I would just finally pass out but I never did. It was like someone was fishing around with a white-hot poker in my side. I could feel every little movement of that thing, as though it were magnified. It was the most horrid experience ever. I was in so much pain I was face down on an ER floor, writhing around trying to find any position of comfort I could possibly find and found none. There were random people of all races going and complaining to the people at the desk on my behalf; and they were astutely ignoring me. I can tell that my brain has walled off the memory till it seems like a distant dull fuzzy memory of a memory. But the more I think about it, the more it comes back and I remember it. It's a level of pain that, you only feel some brief relief in the moment when you're screaming, because it forces your brain into some type of trance that short-cuts the pain response. But when you breathe you screw it all up. Except if you don't breathe it hurts too. There may not have ever been a boundary between pain and not-pain, but if you couldn't at least lie and tell yourself it felt better at times so it seemed like there was hope. I lack the words to properly describe the pain, it was ungodly. Way, waaaaay past the point of giving a care about bothering other people. Lightyears past that point. It was "I don't care if this floor gives me syphilis of the face-type-of-pain". Drink plenty of water. And, you know, wear sunscreen.
This is such a good informative video!! 👏🏻 I am like this I struggled with it for a while not always feeling hungry or knowing how I felt which is really confusing and leads to stress and melt downs and I can hurt myself and not feel it or notice it till a day later lol 😂
My smart watch has improved my quality of life. As I have a dysautonomia it helps me to notice my raised heart rate before I get exhausted. However I was challenged as what I am a ‘dependent’ on my watch. I just said maybe you need to take your glasses off when you drive so you do not get dependent on your eye glasses. And no not anxiety related. HR increases, BP drops and while the watch apps are for physical exertion, it also is a way to check the recovery or body battery.
I ended up with a burst appendix because I had no clue I had appendicitis and even then it took a couple days for the pain to get bad enough for me to finally register it as what'd be severe pain to me. The pain tolerance issue can be absolutely wild.
I definitely have a variable interceptive profile. A lot of the time I am hyper aware of blood sugar variations. But I don’t perceive thirst and am always dehydrated. I think I am hyperaware of brain and nervous system sensations (though i don’t think I’m good at sensing rising levels of stress), but I can almost never feel my heartbeat. But my biggest problem is interpreting what signals I get. I wear glasses, but my long distance sight is pretty good, and so I might forget to put them on. Then I feel weird and spacey until I realize it’s because my eyes are trying to adapt to a different focal length - I’m feeling eye strain. Telling if something is a physical semsation or an emotion is usually almost impossible.
One time I walked back to bed, got comfortable, something compelled me to touch my foot, and it came away wet? So I got up, turned the light on, and my foot was just slashed open. There were red footprints everywhere, I still have the scar, I didn't feel a thing. Apparently a shard of ceramic from a dropped plate in the kitchen had made it all the way down the hall into my laundry pile. And yet bumping into things (which happens several times a day) or the dreaded papercut are enough to completely shock and disable me for a few moments, and sometimes distract me for an hour or three after the fact. The way I usually tell if an injury is serious is if it hurts less than it should. It's a rule of thumb that hasn't failed me yet. Also, I can kind of rely on a bad injury making me feel fuzzy or lightheaded in a specific way. So, even with the pain signals not firing right, my body has a workaround to tell me.
Ever since I've started flapping my hands, I get information from that. My hands will start flapping before I realize anything has agitated me. They make me aware of it. Also swaying does that too
Another great video, Orion. I have the exact thing with pain, as you experience it! sometimes - in my very painful physical job - this can be practical: not noticing the pain helps the job get done 1st. But, I aknowledge: there is indeed danger in that. You can worsen the injury without you even noticing. And yes, the moment I notice blood, the pain appears immediately! Small cuts, finger crushing, and small bruises hurt the most, and are most of the time also immediate. My rediculous job causes hurt and injury to me daily... it costs me more blood than it pays money, so I'm studying hard in order to be able to say: "fare well, daily pains... and F.U., retarded misery of a job"!!! Luckily I am close; allmost there... 6 months of agony to go!!! 😅
I feel like my interception issues are hyperaware. I feel, hear, sense so much in my body all the time. But maybe this came from a life of not being in my body consciously and now, though mediation, breath work and yoga, I feel it all!!!! I can still forgo eating and going to the bathroom and drinking water, bit I feel it, I just ignore it. Ive ben wondering if that is the ADHD? Great convo, Orion!
8:10 Now add in that "we" often seem to be (I know I am!) ticklish! We are wired backwards, apparently! Accidentally slice your thumb? Wrap it in paper towel until you find the super glue... meh... Someone slightly brushes against your side? WGHAfhweahjujnfgds!!!!
I swear I learned this kind of thing before, but it's great to get this sort of bottom-up explanation of things. It feels like I'm re-discovering something I worked out without needing to develop it the long way again.
I have alarms for different times in the day. One at 5pm means its stime to cook so I know I eat at a decent time. I also find when I'm super concentrated at work, I don't get the message that I need the loo and when I break my concentration, I have to go straight away. I also can't tell the difference between needing water or food. I was told to take a drink first and see if that helps and if not, I'm hungry. It also helps stop me over eating when I'm actually thirsty.
I injure myself all the time and don't realize it. Really embarrassing when it happens at work. I can 100% relate to the difference in severity between large and small injuries. I can get a little papercut at work and it feels like my finger was just amputated. But I literally have been shot and had to have my finger reconstructed and barely felt it. I'm sure a lot had to do with adrenaline but that adrenaline wears off eventually and I was still at similar pain levels until the actual surgery
Not me watching this video and prepping to go to bed, only to suddenly realize that I havent had dinner yet and I was so busy at work I skipped lunch... So I was about to go to bed when I haven't eaten in over 12 hours and I didnt even notice I was hungry.
I've learned about interoception and alexithymia before, but... they're connected? Some people physically FEEL their emotions coming on? I thought they were being metaphorical this whole time. I'm jealous - that would be so helpful. I'd also never realized that interocepption applies to the reproductive system. (Seems obvious now, of course.) Maybe this helps explain the link between autism and asexuality / demisexuality. Worth considering.
I've suffered from emetophobia (fear of vomiting) for most of my adult life. Apparently, many autists have this problem and I believe that it is linked to a) hypersensitivity to some sense-based experiences and b) the inability to read what is going on in one's body accurately - an interoception problem. Any bit of queasiness can be interpreted as imminent danger; add the autistic one-way runaway train of monotropic thinking and it's a recipe for torture. You should do an episode on emetophobia and its connection with autism.
I walked around with a dislocated and twisted pelvis for 3 months in pain before finally getting the proper treatment to fix it. Had to see a Physio who specialised in the area I’d tried everything else first
I remember growing up and having no idea what the different pains I would feel in my gut were. I thought I was dying so many times because it felt like I razor blades sliding through my guts but adults all told me I was fine, so I would just act fine but be in pain. No idea what that was, but I assume I just didn't understand what that feeling was, and I still have no idea what it was because it was just the worst and I just remember it stopping one day.
I feel sick instead of feeling hungry. If I leave it for too long I feel too sick to eat. So I eat my meals as a part of my routine and hope I never get hungry!
Would you say that being being able to ignore certain tresholds of pain would be a part of this ? I observed that my tolerance to pain was different to my entourage and that it most than likely complicated my appointments in hospitals or clinics. I feel like I have difficulty gauging the actual level of pain, as if my 3 was a 6 for most.
On autism and pain sensitivity - I hadn't really thought about the potential for _reduced_ sensitivity, but that could have been a factor in my sister's boyfriend's death. Folks, if you've not pooped in an abnormally long time; seek medical advice or at least tell someone. I'd always put it down solely to him being a typical 21 year old autistic man and therefore being fiercely protective of his independence (i.e not being willing to ask for help).
Mines all over the place dancing was helping me with it now bs people in NDIS have banned all the helpful activities being funded which is totally bs I want them sued into the next millennium for the damage they’ve caused me
Years ago I got bit by my cat on my hand and the hand had gotten infected, swelled up like a red balloon! But I had no pain! Yet years later I got bit by a spider on a finger - that got infected too - and it had hurt like crazy!!! Go figure!!
@8:15 same with pain for me. I had a machete hit my knee "oh... ow.. that hurt" Im aware of the pain, but tuned out of it. But if my throat hurts when im sick, i turn into a 200lb baby lol
6th and 7th is proprioception and verstiubular perception. Spelling could be way off. I'm really good and really bad with interoception. The really good is all there an intense but the bad is I'm not sure what signal means. Is it signal or is body just really loud towards me for no apparent reason.
My favorite is, "Why do I have a headache and feel sick? Oh, it's 3PM and I haven't eaten or drank anything today since 7AM. Why does every food look gross now? I guess I'll eat dry cereal."
I'm at full hungry at the moment but the effort to feed myself doesn't as yet seem worth it. Luckily though fasting isn't so bad if done OK. Not saying I do.
oh this explains it but i have this periodicly not all day like most day im fine but today well its 22:05 o clock (thats about 10 pm for us americans) and im eating my first real meal lol beasided the toast with banana this morning and i was not realy snacking i had a pome granade and 2 pieces of 50% dark chokolat for a time span of roughly 12H i literialy dehydrate if i only rely onw ater i need something where i like the taste to drink enough thats why i have zero shugar drink powder so i drink for taste not for thirst and jsut erlyer i was noticing i need to go to the toilet onyl when my bladder was under a large amount of pressure but after that i noticed it better honestly i am gladfull i am always verry tense outside especialy with lots of people and noice and smells i only notice how tense my muscles where when i come home exaustet emotuion whise i must say i didnt do impro theater and self refelcktion studies for nothing and i am glad i did this still sucks to know ok my anger is becose xyz if this means i have to leave the bus or tram by the next occation
Me: Hates the entire world and everything in it. Spouse: Have you eaten anything today? Me: Ummmm Spouse: What was the last time you ate yesterday? Me: Ummmmm. Spouse: Here's a piece of chocolate, now go into the kitchen and get food. Me: Ok, let me finish.... Spouse: NOW! I now have an alarm set for noon to eat and use a calorie tracker to make sure I'm getting enough nutrition. Meal shakes are great too. Especially when I'm disregulated, it removes the food issue. As far as the injury thing, dried skin drives me nuts and I can't focus on anything. I've walked home after a bad bike crash with a broken arm and I didn't really care. The break didn't bother me, the itching under the cast was infuriating.
My mother is dy1ng, I have no family, I'm in a dangerous place, I have a certain degree of autism, I have PTSD, anxiety, depression, I don't know what to do. The people where I live made my mother sick
The overriding problem of my entire 7 decades, hyperaware of certain sensations, and total cluelessness of others.
So this could be why I wet the bed until my teens, and how I can read an entire book in one sitting, then realize that I haven’t eaten, drank anything, used the toilet, etc.
I sucked my thumb till I was 10.
Also, reading an entire book in one sitting is the best way to read a book.
I often have no idea how quickly I need to get to the bathroom until I stand up from my desk. Especially true if I’m researching something on the interwebs.
My mum can read a whole book in one sitting! And she hasn't a diagnosis of ASD! 😂I do have a diagnosis but I literally can't do what she does with books
I think sometimes I don't notice I'm not when I'm hot but when I'm cold I know I am cold!
Not necessarily. Flow state or intense focus/immersion on a task can have the same effect.
When I'm feeling off or anxious I ask myself out loud what I may need as if I were asking a friend. It feels kind of silly but verbalizing helps me a ton and in the end that's what matters. "When is the last time you ate, could you be hungry?" "How about we sit down and cuddle the cats for a while?"
That's a great idea, I'm gonna have to try it. I've already tried it when I play competitive video games, where I say out loud to myself what I'm about to do, to spot if I'm making a bad plan of action, but never thought to do it irl
Oh man I needed to read this. Going to try it right now.
Going to try this! Thanks
This is really interesting Meh Lady. Cheers, Andre
Dude I'm noticing I'm hungry when it's too late, I'm suddenly so hungry. I feel it so intensely when it strikes like that
Same here. Orion understands neuroscience better than 99 percent of humans, and I’m a comparative veterinary researcher. He is doing a very good job!
When blitz cleaning decades of storage under our family home, my son asked me if I'd had anything to eat or drink. Told him I'd come up for a late brekky soon. He replied that it was 2pm 😂
@@suecollins357 I always take my breakfast after my job, round 17h (5 PM)... if I eat before that, I get immensely sluggish... slow and depressed. I also am never ever hungry before 16 - 17h, for some odd reason. 🤔
@suecollins357 Yeah I do that. I get to working on something and then the next thing I know it's afternoon and I've missed 2 meals and I'm starting to feel lightheaded and shaky.
@Vicious-Spiral I really hate eating in the morning. It's so difficult for me to choke down "breakfast". But I'm legally-blind and ride my bicycle everywhere. On the days I ride to the college it's 20 miles away and I've found if I don't eat it's bad, so I have to force-feed myself in the morning just so my body has calories to burn.
Sometimes in the morning it feels like there's a lead ball in my stomach, and I'll drink some water to make it go away, but I hate eating in the morning unless it's cold pizza or something like pasta salad.
@syberphish I don't eat, but I do take a lot of supplements in the morning, in pillform, and easy to swallow down with my morning water. So I make sure I have the essentials like vitamins, minerals, omega's and many others. And when I arrive at my hated, brutal, heavy physical job, I drink half a litre of semi-skimmed milk. Ad fundum. 😂 something like that might help you too... milk, for me, is a miracle drink.
But for me, the actual hunger for food, it comes only after 5 PM. After work, the pain and hunger arrive, punctal as a Swiss watch. As a child, I was already unable to eat in the morning. No breakfast, as far back as I can remember. After puberty hit me hard, lunch-hunger dissapeared and so I ended up only eating after school, never before or at school. This - over time - has formed into a weird thing: if I do eat before I feel hungry, it really makes me depressed, tired, angry and ruins my day. It can even lead to implosion or worse... Even eating a single cookie or a few peanuts or a fistfull of popcorn will have this weird effect on me.
So "breakfast", "brunch" and "lunch" are completely out of the question for me, alas. 😢
It makes dinner taste thrice as good though, the only advantage of this, I guess.. 😅
So do you eat all your day calories in 1-2 sittings? I wonder how to keep body well fed, and preferably, with healthier food too. I do feel hunger ok, but I struggle with eating enough calories already and struggle to imagine how you make it work😅
@@SparkofyourheartYes, I eat all my calories in 1 sitting: dinner. With the exception of the milk. So dinner is a lot for me: about 3000 calories. After dinner, in front of the TV, I snack raw broccoli, raw brussel sprouts, fruit, raw coal, sea grass... and a lot of supplements.
Thanks for this Orion. I have no sense of being hungry. Also removed from my feelings often until it's too late ie meltdown happens.
Just got my late diagnosis on the 11th. Your channel was suggested to me and I've enjoyed it. I'm learning language for what has always been just ambiguous feelings inside me.
Thanks for your hard work on this subject. I've experienced tooth abscesses that nearly killed me because I didn't feel the pain. As a cild, played tag with a broken collar bone and an ankle fracture on separate occasions. Soft tissue seems to register pain normally. Bone and teeth, not so much. Experiencing hypo and hyperthermia due to reduced sensitivity. On the other hand, hypersensitive to emotional states of others.
Me, too! I've had near-death tooth abscesses and other raging infections that landed me in ER, but I experienced no early symptoms. I felt fine, then suddenly, I collapse. I've also had alcohol poisoning on 2 shots, because I'd forgotten to eat for over 24 hours.
It takes days/weeks/months/years/decades for me to sort out how I'm affected emotionally by what I've experienced in social interactions; on the other hand, I've been told dozens of times that I perceive how someone else thinks/feels more clearly than they do. I've thought this was a result of growing up in fear of a raging dad, but I may have developed this imbalance anyway. I do know that fear of my dad's violence made me hyper-vigilant to the moods of others.
Thankyou Orion for another important message. 😊
Well said Deborah. I was looking for the right words, couldn't find them, you had them haha.
I definitely have this with food. I often get sick rather than feel hungry.
I also almost died from a pesticide spill and had to be on a feeding tube (jtube) for nearly 3 years. I had to teach myself how to eat again. I put myself on a strict schedule and finally gained weight back
your videos helped me when i was breaking off a 9 year toxic relationship. i got tired of masking and being apologetic for my existence. thanks man.
7:42 This is my issue. I fell down some deck stairs and thought I broke my ankle. I went to a medi-clinic and got an x-ray. The doctor said, “No break. Just a bad sprain. However… the x-ray shows you DID break your ankle some time in the last 10-12 months. 👀
I wouldn't be surprised if this happened to me too. I know for a fact I've hurt my ankles pretty bad, but they usually stop hurting after a day even when they're still swollen. I'm 41 and I still wake up with bruises or deep scabs that I have no idea how I got them. It's such a strange phenomenon that we can't feel certain pain.
I was in the hospital for some reason and a doctor looking over some xrays asked me when I broke my neck.
And I went "...excuse me?"
He looks at it and points and goes "yeah, right here, you very clearly broke your neck at some point".
Probably why I been having a ton of neck pain....
Same here. I injured my ankle. I thought it was just a bad sprain. After walking around living my normal life for 2 months, I wondered why it wasn’t healing. M doc sent me in for x-rays. Turns out it was a fracture with more or less a dozen small bone fragments stuck under the skin. Much to m surprise!
@@JHixon-bi8ok I did notice that my right ankle got "bumpy" and it now sticks out farther on both sides than my left ankle. I didn't put 2 and 2 together because it didn't hurt that much.
Me: I can feel my heartbeat!
Also, me: I'm dying! Don't let anybody notice😳
Very cool reply Kevin
This was a very relatable discussion😅 A paper cut will have me in meltdown mode for a full day, but one time I literally broke my finger in a moment of adrenaline and only noticed 8 hours later when my finger was huge and purple 😆
When I'm hyper focused, I only get my body signals when they switch over to pain.
Sweaty and shakey? Crap hands not working right. Need to eat.
Kidneys hurt? Oh crap I need to pee. Bladder gave up on me and sent the signal to my kidneys.
Then I get up and my legs are like "Guess who else you've been ignoring for six HOURS!?!" wobblewobblestumble
Kidney pain is real. Every few months I make a cup of juniper tea which helps. 😂
Oh wow! When I got my first pair of shoes after a few days wearing them my mom noticed a hole in my foot! Turns out there was a tack or nail in the bottom! I never fussed. I wore them for hours each day learning to walk in them. (1978). I have fibromyalgia since age 22 but at age 24 nearly died from my gallbladder, liver & pancreas all being infected. I needed 2 surgeries & 9 days in the hospital yet earlier that day I took my 15 month old & her 5 yr old sister to the beach. My back hurt a bit. I do not have a formal diagnosis yet but can add this to my very long list of symptoms & evidence! Thank you.
Routine is really the only reliable way I have of actually staying fed, hydrated and getting enough rest... It's more difficult now as life seems more chaotic and pressurized now 🤔🙄
@@juliesmith6228
Meanwhile AuDHDers
Me: ...
My husband: Are you hungry? Are you thirsty?
Me: uhhh...
My husband: Loads me up with fruit and water.
Me: ohhh right I am hungry and thirsty.🤦🏾♀️
That's a good husband right there!
I was work once and really hungry but not noticing it. Then deer walked by outside and my mouth salivated big time, the deer started looking really tasty. I've had venison steaks cooked to perfection. Not like bugs bunny cartoons where Yosimite Sam views Bug Bunny as roasted rabbit. Just the idea of that steak and my hunger is made aware.
@chrismaxwell1624 me too
Def the same as you if I hurt myself, big reaction to something small, really small reaction to something bigger and will quite often notice bruises on me with no idea what I did.
I've recently been diagnosed with emotionally unstable personality disorder and I also have autism. This video really helps me in directing and understanding my own feelings. Thanks for this upload 👍
Oh, I actually do need to go to the toilet. Thanks for the reminder!
I find it helpful to relate to others on this topic even though I never received other diagnoses outside of chronic PTSD and all these autoimmune disorders. When I’m in pain I have no idea what I’m feeling. If I’m in an emotional flashback it is like living in a very small world where everything is overwhelming sensory wise. Sometimes I try to guess what other people are feeling and that messes with having interception, because of paying so much focus on outside noises and people’s moods.
Thank you 🙏 Orion. This is an excellent presentation and should be used to educate neurotypical people
Had discomfort for 6 months from a weak, cracking wrist before seeing a doctor to have it x-rayed. Required 3 months of even more discomfort in a cast up to the shoulder, to finally have the fractured wrist heal.
This resonates so well. I've taken to saying "ow that hurt" when i bump or scrape something just to place a marker in case i notice I'm bleeding or muscles aren't working well later.
An autist whose special interests include meditation can be powerful indeed.
Oh man oh man oh man. I honestly started this video not expecting to match up with anything but maybe the hunger thing.... and ended up relating to EVERYTHING. Can't tell I'm hungry until I'm nauseous and my head hurts, don't know I'm dehydrated until I have cotton mouth and my lungs aren't working very well despite my inhalers, I usually don't know I'm hurt unless I get like 50 tiny splinters at once from my firewood, otherwise nothing really hurts except loud sounds. A couple years ago, I didn't know I was having gall bladder issues until they were literally suddenly infected and I had to have emergency surgery and the ER morphine was only working for about 10 minutes at a time. I can't even recall how many times I've cut myself pretty bad and I've just looked at my bleeding hand trying to figure out how the heck that happened and I didn't feel it. When I was 10, I stepped on a broken glass bottle in the lake, and it didn't even hurt, I only freaked out because my foot was bleeding a lot. The only thing I notice is when I have to pee, because between diabetes and anxiety I have to pee like 20x a day. My daughter, who is also autistic, needs constant reminders to eat and bathroom stuff and drinking. She does better in some aspects, but she is over-sensitive to pain (little things hurt her, whereas I don't feel most pain). We also both don't go to sleep until we're literally falling asleep doing stuff. I literally have to have alarms set for lunch and dinner so we don't forget to eat. And neither of us feel the cold very well, we have high cold-tolerance and kind of low heat-tolerance. There are a lot of times my daughter would seem to get her hots and colds mixed up. And I have read each Harry Potter book in ONE sitting each, I think only breaking for tea or bathroom breaks. In fact, I still tend to read books in one sitting.
I literally had no idea these were autism things. I just thought everyone gets carried away sometimes, and I thought not realizing we got hurt came from being a kid and getting carried away again. I had NO idea these specific things were specific to autism. I don't even recall these things being on the official autism diagnosis questionnaires.
Hi ! I am so grateful for this video. I finally have an explanation for my inability to notice how I feel !
Thanks for another great video Orion! Sometimes when I tune in to my body it actually feels very uncomfortable. I guess the distress eases with practice
I recently discovered about introception thanks to an audio book I bought - “self care for autistic people”, by Megan Anna Neff. She talks about the hypo & hyper sensitivity in relation to introception. Tho I really do appreciate you creating a video about this cuz knowing this has helped me a lot and I know it will help loads more people!
Personally I’m terrible at knowing when I’m thirsty and I will either eat to a schedule, not eat for a while or over eat (for comfort). I’m terrible at reading my body’s bowel signals and I’m generally terrible at being able to tell what I’m feeling til I’m on the verge of a meltdown or recovering from one.
I won’t feel when I’ve had minor cuts or burns til later on, but Labour with my daughter was absolute agony to the point things just weren’t moving forward, even after 5 days of agonising contractions, cuz the pain was just too intense and non-stop.
It does make me wonder if this is why hayfever hits me so hard… 🤔
This video is very applicable to my life.
Thanks for the information 👍
I’m not autistic. I’m just different I thought probably because of childhood trauma? So it’s ok, right? I’m strong, very focused, workaholic, who loves nature, animals, my kids, my pets, my couple of friends.
Couple of years ago my daughter in law suggested to my son that I’m on spectrum, same as my son. She has several family members in different levels of functioning.
I dismissed that. Not because I have a stigma or because it came from my daughter in law, but because no one in health care environment suggested that to me - I live in this environment my whole life.
However, couple of months ago we were talking with my son, I was updating him on my latest events- we live in UK and Canada . Suddenly he told me “mom, it’s so autistic “!
I started to look into the topic. At last TH-cam offered me one of your videos - instantly I listened about myself. Again and again. Very strange. I’m still in doubt, but I started to adjust my behaviour and attitude to myself. So far it helps.
Thank you.
@@tatianaborzhemska3164 Hello, I had a lot of the same doubts about being Autistic for 20+ years. Being diagnosed ADHD Inattentive was a catalyst for the last 3 years, and in trying to figure 'me' out lead to the discovery that being ADHD/ASD fits better with me.
The thing that made me feel better was reading 'Normal people don't think about being Autistic for years, they don't worry about it at all'.
In short, untraumatized ADHD and Autistic people don't exist. If it looks like zebra, acts like a zebra, don't assume that it's just a broken horse.
@@SuperBluCatoh I love that! Everyone else is a horse, you're a zebra. Brilliant way of putting it.😁
I still doubt my very late diagnosis at regular intervals - ADHD, not so much, GAD not at all. What I can say from the large amount of AuDHD discussion I follow is that I “quack like a duck” in so many ways, and as you describe, it’s helpful in starting to understand myself. Whether I am clinically autistic is almost beside the point in some ways, because clinical diagnosis is based on an impairment model, and while neurodivergent traits are lifelong, levels of impairment can increase or decrease depending on health or life stresses. This is how they used to conclude that kids could “grow out of” autism, which is not what happens. But in addition to learning masking, I’ve seen a lot of people talk about how they started to present with more obvious “autistic symptoms” (burnout, meltdowns, dysregulation) when they got older, or circumstances got tougher, or coping strategies started to exert a greater cost. Since crashing and burning and getting diagnosed at 60, I’ve learned I’m hardly alone in that. My impression now is that one reason for learning these things about ourselves is to figure out what we need to do to cope with our personal abilities and limitations, and to understand why we function the way we do. Because the notion that if we made it to adulthood and are managing, that things could not possibly get worse as we age is a fallacy.
What I *think* I’m starting to figure out is what are trauma triggers and what is the way I’m wired. It’s tricky, not least because I’m kinda alexithymic, but I am maybe starting to tell one from the other. It’s hard, because I was brought up in an era when it was assumed that anything a person had trouble feeling was due to willful suppression. I have some of that for sure, but there are also places where it feels like I have odd connectivity, neural pathways that don’t function like parts of my brain expect. It feels different somehow, and if I tease it out I think it will make it easier to deal with the legit trauma, because I won’t be confused by false flags. And addressing trauma is a different strategy from addressing what might be a bit like a learning disability - or unusual interoception.
A bunch of thoughts.
@@jimwilliams3816 very interesting bunch! 🙂Thanks for sharing.
Thank you for these videos. They are extremely informative and validating.
I walked on a broken fibula for 12 days before going to a doctor and was immediately sent for surgery.
Very helpful information Orion, thank you!
7:27 For me, pain is very intense. Yet if I dare speak up, I’ve had multiple doctors tell me that I’m wrong and dismiss me altogether. At which point I promptly shut down, too afraid if I’ll say something else ‘wrong’.
Thank you so much! Don’t see a lot of info on this and I appreciate that you spoke about it. I’m curious about the autonomic nervous system. How bad can it get? I have tachycardia type issues that no one seems to be able to diagnose. I saw a blurb of a study about tachycardia issues in autistic people on pubmed, but need further info and I don’t know where to find it. Any ideas? Thank you!
Same, turned out to be Postural Orthostatic Tachycardia Syndrome (undiagnosed for 45 years). British MD Jessica Eccles is studying it some, and Pots UK has great videos by her and others. There is an easy test, NASA stand test, you can do at home. MDs in general know nothing about it, at all, very few specialists, lots of gaslighting in my experience. Videos of talks by Dr Blair Grubb, David Systrom, Alan Pocinki, a few others, have been most helpful. Dysautonomia International has good info too. Best wishes
I think it would be sweet if you greeted the audience "you STARS!" Something about hearing that on the Aussie accent is just 🧑🍳💋
*listens to intro* oh it’s 3pm and I haven’t eaten yet…
I only realise I'm hungry when I'm starving or when I start eating, just then I feel the emptiness in my stomach.
i dont get hungry, i just get dizzy and know i need to eat.
WHAT IS HARD is when you're in the trance and hyperfocused.
Good pronunciation of tricky words, Orion! (66-y-o- retired biochemist here) Very helpful. I've always had touble with noticing hunger and thirst, but I've noticed my interoception getting worse the last few years. Anyone else notice this, or is it just aging?
I'm 47, and not introception, but other "symptoms" do seem to worsen over time... eg. The rate of implosions increased, both in time and in intensity.
I use a scale to describe my state to my best friend. Level 1, extremely rare: clear thoughts, hyperrrrr functional and "happy."" Level 2: my usual "normal" state: relative clear thoughts withe a haze over it. Still highly functional, still happy. Level 3: my thoughts start to get more and more mixed up and the haze becomes intense. I can still function, follow conversation, and speak. But errors will appear in my speaking, because I pick wrong words in my answers. So my speech declines, and I feel unhappy. I get angry with myself and the stuttering starts. From here, it doesn't take much to go to Level 4: I don't understand my own thoughts because they become abstract, conversation becomes impossible, because I don't understand what is said and am incapable to speak anything but ununderderstandable mumbling. At this point, I'll send a pre-made text to my best friend: "4!". He knows what's up and comes over, to check if I didn't go to Level 5: complete insanity in my head, and I can't safelt walk or simply talk, so I go and just lay down somewhere: bed, ground, couch, whatever. Moving around is very dangerous for I have no clue what I'm doing. Recently: Level six has appeared: losing days, without memory. I wake up in Level 3 or 4, thinking it's Thursday, but it's actually Saturday... that one is new! 😢 luckily my friend comes to check on my wellbeing regularly after sending the "4", otherwise... 😢
As a child, there was only Level 1, 2 and rarely 3. Puberty: 3 becomes more often, and at age 16 level 4 suddenly appears. In my late 20's Level 5 suddenly popped up. And 3 years ago, I had to up my scale to Level 6. I REALLY HOPE THIS IS THE FINAL LEVEL... 😢😢😢
SO, YES... for me some things worsened by aging. I can put it on a timetable even!! 😢
At level 3,5 as we speak, so forgive me if there are wrong words or typos... I always try to edit them out immediately or later on.
That's why most of my messages are edited...
I broke my leg in 3 places a few years ago riding a dirt bike. I heard it broke, felt the 'pop' inside my leg when it broke but wasn't sure I actually broke it. I had to try to move it before I knew it was broke. Never felt like more than just pressure. Freaked the nurses out when I moved it in the hospital for a better x-ray image. Couldn't figure out why they were all so surprised but ah, yeah. This explains it lol. I've never felt pain from bigger injuries. Thank you for explaining this in this way, helped to finally make some of the things I hadn't quite wrapped my head around make sense.
I have lost times of the amount of times where I've somehow gotten hurt and felt no pain. Only becoming aware of the fact that I was injured because I felt something wet (ie. blood).
I can so relate to the pain one. Or lack of pain. I costantly notice cuts and bruises that I have no idea where it came from. Also, I remember I walked home from school decades ago on what I thought was a sprained ankle. It was actually broken!
My sensitivity to pain fluctuates. I'll often become injured and realize I'm bleeding and have no idea how I hurt myself. But then things like tooth pain or kidney stones... oh my gosh, I was in the ER just screaming in pain for hours and they mostly ignored me and treated me like a junky. Which is a terrible experience when you're in ungodly pain.
Nothing quite like a Doctor seeing drug seeking behaviour because I'm in too much pain. Even worse is the opposite, where I must be faking it because because of flat effect and low emotional output.
I am usually very good at masking, but it rarely seems to be working when it comes to doctors and nurses.
Oh my god, kidney stones. I have been told by women who have had them that they are worse than child birth. I can believe it.
Don’t get me started on emergency rooms. I’ve been there a few times in the last 5 years for family members, and honestly I feel like I’d rather die than go there myself again. Not that they got me in quickly when I was thrashing around with the kidney stone almost 20 years ago.
I have few kind words for in patient care either.
@jimwilliams3816 no one ever really taught me much about how my body works, and what not to do to it. I never understood about things like staying regular.
I would often go several days and never thought anything of it. It wasn't till the kidney stones that I realized just how little water I was drinking, and how much better my body functions when it gets all the water it needs every day.
I always found drinking water to be incredibly boring. Lived on sodas and juice. But I always loved Pelegrino and Perrier.
Not as a kid, but they grew on me.
So now I keg my own soda water in the fridge. I have a 5gal "korny keg". I like the fizz, I like being able to adjust how much co2 is being used. And I love drinking it.
So now I go through 5gal of water every 7 days, like clockwork. A little less in the winter.
When my co2 cylinders all run out, in the intervals of weeks before I go get them refilled, I'll start feeling my right kidney ache and realize I'm low on fluids.
Ugh I hate that. I do my best to not make noise when in pain. I don't want to bother anyone. I downplay it as much as I can. And that's not considered normal.
Then the major signs hit like fainting and vomiting. Then I disassociate because my brain does that when I'm in an intense panic/pain state.
And yeah the voice thing. I sound like I'm having a stroke when in intense pain or panicky. Can't control tone or volume at all.
Thankfully I've been able to rely on family and friends when in danger to translate the pile of nope that is me.
But I hate not knowing what's going wrong. I can handle pain if I know what's wrong and that it's not compounding damage.
Sighs. Not drug addicted. Just holding it together so I'm not a bother.
@@Tormekia I totally agree with you about not making noise and bothering people when I'm in pain.
I was in pain to the degree that I was rolling around on the floor of the bathroom in the ER, screaming, hoping I would just finally pass out but I never did.
It was like someone was fishing around with a white-hot poker in my side. I could feel every little movement of that thing, as though it were magnified. It was the most horrid experience ever.
I was in so much pain I was face down on an ER floor, writhing around trying to find any position of comfort I could possibly find and found none.
There were random people of all races going and complaining to the people at the desk on my behalf; and they were astutely ignoring me.
I can tell that my brain has walled off the memory till it seems like a distant dull fuzzy memory of a memory.
But the more I think about it, the more it comes back and I remember it.
It's a level of pain that, you only feel some brief relief in the moment when you're screaming, because it forces your brain into some type of trance that short-cuts the pain response. But when you breathe you screw it all up. Except if you don't breathe it hurts too. There may not have ever been a boundary between pain and not-pain, but if you couldn't at least lie and tell yourself it felt better at times so it seemed like there was hope.
I lack the words to properly describe the pain, it was ungodly. Way, waaaaay past the point of giving a care about bothering other people. Lightyears past that point.
It was "I don't care if this floor gives me syphilis of the face-type-of-pain".
Drink plenty of water.
And, you know, wear sunscreen.
This is such a good informative video!! 👏🏻
I am like this I struggled with it for a while not always feeling hungry or knowing how I felt which is really confusing and leads to stress and melt downs and I can hurt myself and not feel it or notice it till a day later lol 😂
This makes so much sense.
Thumbs up .. Yet another great video :)
I feel like the princess from “princess and the pea” must’ve been autistic. I think the little things really stick out and bother me too!
My smart watch has improved my quality of life. As I have a dysautonomia it helps me to notice my raised heart rate before I get exhausted.
However I was challenged as what I am a ‘dependent’ on my watch. I just said maybe you need to take your glasses off when you drive so you do not get dependent on your eye glasses.
And no not anxiety related. HR increases, BP drops and while the watch apps are for physical exertion, it also is a way to check the recovery or body battery.
@shawnaford5540 Thank you for bringing awareness. I never heard of dysautonomia. Wishing you the best!
I have those alarms for myself and my dog
Awesome, Orion. Thanks for this
You hate the charts with the doctors office lol 😂
I ended up with a burst appendix because I had no clue I had appendicitis and even then it took a couple days for the pain to get bad enough for me to finally register it as what'd be severe pain to me. The pain tolerance issue can be absolutely wild.
I definitely have a variable interceptive profile. A lot of the time I am hyper aware of blood sugar variations. But I don’t perceive thirst and am always dehydrated. I think I am hyperaware of brain and nervous system sensations (though i don’t think I’m good at sensing rising levels of stress), but I can almost never feel my heartbeat.
But my biggest problem is interpreting what signals I get. I wear glasses, but my long distance sight is pretty good, and so I might forget to put them on. Then I feel weird and spacey until I realize it’s because my eyes are trying to adapt to a different focal length - I’m feeling eye strain. Telling if something is a physical semsation or an emotion is usually almost impossible.
One time I walked back to bed, got comfortable, something compelled me to touch my foot, and it came away wet? So I got up, turned the light on, and my foot was just slashed open. There were red footprints everywhere, I still have the scar, I didn't feel a thing. Apparently a shard of ceramic from a dropped plate in the kitchen had made it all the way down the hall into my laundry pile.
And yet bumping into things (which happens several times a day) or the dreaded papercut are enough to completely shock and disable me for a few moments, and sometimes distract me for an hour or three after the fact.
The way I usually tell if an injury is serious is if it hurts less than it should. It's a rule of thumb that hasn't failed me yet. Also, I can kind of rely on a bad injury making me feel fuzzy or lightheaded in a specific way. So, even with the pain signals not firing right, my body has a workaround to tell me.
Pilots develop a 'flow check' routine for maintaining situational awareness. .. don't we 'pilot' our own bodies and minds at our best?
🌻
Ever since I've started flapping my hands, I get information from that. My hands will start flapping before I realize anything has agitated me. They make me aware of it. Also swaying does that too
Another great video, Orion. I have the exact thing with pain, as you experience it! sometimes - in my very painful physical job - this can be practical: not noticing the pain helps the job get done 1st. But, I aknowledge: there is indeed danger in that. You can worsen the injury without you even noticing. And yes, the moment I notice blood, the pain appears immediately!
Small cuts, finger crushing, and small bruises hurt the most, and are most of the time also immediate.
My rediculous job causes hurt and injury to me daily... it costs me more blood than it pays money, so I'm studying hard in order to be able to say: "fare well, daily pains... and F.U., retarded misery of a job"!!! Luckily I am close; allmost there... 6 months of agony to go!!! 😅
Good luck 🍀
@suecollins357 thank you!
4th Grade Left Ankle injury while training basketball & came to see the Surgeon on My own..using public transport : D i was 16!
Brilliant video!,
I feel like my interception issues are hyperaware. I feel, hear, sense so much in my body all the time. But maybe this came from a life of not being in my body consciously and now, though mediation, breath work and yoga, I feel it all!!!! I can still forgo eating and going to the bathroom and drinking water, bit I feel it, I just ignore it. Ive ben wondering if that is the ADHD? Great convo, Orion!
8:10 Now add in that "we" often seem to be (I know I am!) ticklish! We are wired backwards, apparently!
Accidentally slice your thumb? Wrap it in paper towel until you find the super glue... meh...
Someone slightly brushes against your side? WGHAfhweahjujnfgds!!!!
Explains a lot ❤
I swear I learned this kind of thing before, but it's great to get this sort of bottom-up explanation of things. It feels like I'm re-discovering something I worked out without needing to develop it the long way again.
I have alarms for different times in the day. One at 5pm means its stime to cook so I know I eat at a decent time. I also find when I'm super concentrated at work, I don't get the message that I need the loo and when I break my concentration, I have to go straight away. I also can't tell the difference between needing water or food. I was told to take a drink first and see if that helps and if not, I'm hungry. It also helps stop me over eating when I'm actually thirsty.
I injure myself all the time and don't realize it. Really embarrassing when it happens at work. I can 100% relate to the difference in severity between large and small injuries. I can get a little papercut at work and it feels like my finger was just amputated. But I literally have been shot and had to have my finger reconstructed and barely felt it. I'm sure a lot had to do with adrenaline but that adrenaline wears off eventually and I was still at similar pain levels until the actual surgery
💎
Not me watching this video and prepping to go to bed, only to suddenly realize that I havent had dinner yet and I was so busy at work I skipped lunch... So I was about to go to bed when I haven't eaten in over 12 hours and I didnt even notice I was hungry.
I've learned about interoception and alexithymia before, but... they're connected? Some people physically FEEL their emotions coming on? I thought they were being metaphorical this whole time. I'm jealous - that would be so helpful.
I'd also never realized that interocepption applies to the reproductive system. (Seems obvious now, of course.) Maybe this helps explain the link between autism and asexuality / demisexuality. Worth considering.
I've suffered from emetophobia (fear of vomiting) for most of my adult life. Apparently, many autists have this problem and I believe that it is linked to a) hypersensitivity to some sense-based experiences and b) the inability to read what is going on in one's body accurately - an interoception problem. Any bit of queasiness can be interpreted as imminent danger; add the autistic one-way runaway train of monotropic thinking and it's a recipe for torture. You should do an episode on emetophobia and its connection with autism.
smart watches / fitness trackers can also give additional external information on your body, even cheap ones
I walked around with a dislocated and twisted pelvis for 3 months in pain before finally getting the proper treatment to fix it. Had to see a Physio who specialised in the area I’d tried everything else first
I remember growing up and having no idea what the different pains I would feel in my gut were. I thought I was dying so many times because it felt like I razor blades sliding through my guts but adults all told me I was fine, so I would just act fine but be in pain. No idea what that was, but I assume I just didn't understand what that feeling was, and I still have no idea what it was because it was just the worst and I just remember it stopping one day.
I feel sick instead of feeling hungry. If I leave it for too long I feel too sick to eat. So I eat my meals as a part of my routine and hope I never get hungry!
Anyone else on the Autism Spectrum and have HYPER - Interoception? I am too sensitive and attuned to internal sensations...
I am hypersensitive to itchiness and hyposensitive to temperature changes.
I’m almost positive that this is why I had a stroke - not understanding what my body was trying to tell me.
Would you say that being being able to ignore certain tresholds of pain would be a part of this ? I observed that my tolerance to pain was different to my entourage and that it most than likely complicated my appointments in hospitals or clinics. I feel like I have difficulty gauging the actual level of pain, as if my 3 was a 6 for most.
Nothing says interoception problems like running to the bathroom when you are middle aged because you just realized that you had to go. 😆
Even worse in perimenopause and with fibroids
On autism and pain sensitivity - I hadn't really thought about the potential for _reduced_ sensitivity, but that could have been a factor in my sister's boyfriend's death. Folks, if you've not pooped in an abnormally long time; seek medical advice or at least tell someone.
I'd always put it down solely to him being a typical 21 year old autistic man and therefore being fiercely protective of his independence (i.e not being willing to ask for help).
Mines all over the place dancing was helping me with it now bs people in NDIS have banned all the helpful activities being funded which is totally bs I want them sued into the next millennium for the damage they’ve caused me
Years ago I got bit by my cat on my hand and the hand had gotten infected, swelled up like a red balloon! But I had no pain! Yet years later I got bit by a spider on a finger - that got infected too - and it had hurt like crazy!!! Go figure!!
@8:15 same with pain for me. I had a machete hit my knee "oh... ow.. that hurt"
Im aware of the pain, but tuned out of it. But if my throat hurts when im sick, i turn into a 200lb baby lol
I am the 666th like >:) great video though! Love your content as always
neuroscience saves lives
6th and 7th is proprioception and verstiubular perception. Spelling could be way off.
I'm really good and really bad with interoception. The really good is all there an intense but the bad is I'm not sure what signal means. Is it signal or is body just really loud towards me for no apparent reason.
Thanks for that wasn’t sure what was counted as six and seven
So when you gonna get onto the Panel my dude? Good lawd you're long overdue for more exposure 🙏
My favorite is, "Why do I have a headache and feel sick? Oh, it's 3PM and I haven't eaten or drank anything today since 7AM. Why does every food look gross now? I guess I'll eat dry cereal."
My problem is more that my 8th sense is screaming at me all the time, and thus I start to ignore it at my own disadvantage ..
I'm at full hungry at the moment but the effort to feed myself doesn't as yet seem worth it. Luckily though fasting isn't so bad if done OK. Not saying I do.
oh this explains it but i have this periodicly not all day
like most day im fine but today well its 22:05 o clock (thats about 10 pm for us americans) and im eating my first real meal lol beasided the toast with banana this morning
and i was not realy snacking i had a pome granade and 2 pieces of 50% dark chokolat for a time span of roughly 12H
i literialy dehydrate if i only rely onw ater i need something where i like the taste to drink enough thats why i have zero shugar drink powder so i drink for taste not for thirst
and jsut erlyer i was noticing i need to go to the toilet onyl when my bladder was under a large amount of pressure but after that i noticed it better
honestly i am gladfull i am always verry tense outside especialy with lots of people and noice and smells
i only notice how tense my muscles where when i come home exaustet
emotuion whise i must say i didnt do impro theater and self refelcktion studies for nothing and i am glad i did this
still sucks to know ok my anger is becose xyz if this means i have to leave the bus or tram by the next occation
jeh no i wont set a calander
demand paralyzis is a thing with me
6th sense intuition
7th sense conscience
Me: Hates the entire world and everything in it.
Spouse: Have you eaten anything today?
Me: Ummmm
Spouse: What was the last time you ate yesterday?
Me: Ummmmm.
Spouse: Here's a piece of chocolate, now go into the kitchen and get food.
Me: Ok, let me finish....
Spouse: NOW!
I now have an alarm set for noon to eat and use a calorie tracker to make sure I'm getting enough nutrition. Meal shakes are great too. Especially when I'm disregulated, it removes the food issue.
As far as the injury thing, dried skin drives me nuts and I can't focus on anything. I've walked home after a bad bike crash with a broken arm and I didn't really care. The break didn't bother me, the itching under the cast was infuriating.
So interoception is the annoying engine light in a car that we just ignore, got it
I get so many bruises and not know how I got them
I'm forty and have to pee 3 times before bed.... It's the single most annoying thing ever!
My mother is dy1ng, I have no family, I'm in a dangerous place, I have a certain degree of autism, I have PTSD, anxiety, depression, I don't know what to do. The people where I live made my mother sick
I don't think about eating until I get HANGRY. Then, eat and eat & don't get a sense of fullness. Binge eating.