Interoception: How Do I Feel?

Let’s talk about interoception. I bet you’re already on the edge of your seat, right?

Okay, okay, first a definition. Interoception describes our sensitivity to sensations that originate in our bodies. Think pain, temperature, itch, sensual touch, sensations from our organs and muscles, hunger, thirst, and breathlessness.

All of these sensations combine to give us a sense of sentience. I’m hungry therefore I am.

interoception

Our Body’s Dashboard

Interoceptive feedback is important for keeping our bodies in good working condition. Think of them as the body’s dashboard. Are we low on fuel? Running too hot? Has it been too long since some critical service was performed or is a warning light flashing? Interoceptive sensations provide the feedback necessary for troubleshooting and correcting imbalances in the body.

Emotions often arise from our interoceptive sensations, too. When someone asks how you feel, you probably subconsciously check-in with your body, and realizing that you’re tired, hungry, hot, or achy, you reply, “not too great.” Or conversely, if your interoceptive sensations are in balance, you might report feeling happy or at least content.

Obviously not all emotions are tied to interoception, but it’s hard to be happy when you’re in pain or content when you’re itchy. For many people being hungry or tired is a direct route to being cranky and short-tempered. Those of us who are alexithymic experience this even more strongly, often struggling to identify the difference between emotions and physical sensations. I can’t explain how my body confuses “upset” with “cold,” but sometimes it does. Now I know that if I’m feeling cold when no one else around me is, I need to check in with my emotions. And put on a hoodie.

Engage Interoceptive Dampeners

But what if your interoceptive system is dampened? What if a sensation needs to be in the red zone before it comes up on the dashboard? Well, then you forget to eat or stare in wonder at your bleeding toes or don’t realize you might be in pain until you pass out. Sound familiar?

Many autistic people have dampened or muted interoception. We just don’t seem to notice what’s going on in our bodies until it reaches a level that other people would find intolerable. And often when we do notice it, it goes from “oh that’s happening” to intolerable really darn fast.

As often as I experience this in minor, inconvenient ways, I’m occasionally reminded of how dangerous it can be. Because hindsight is 20/20, I can see in retrospect that I recently had a UTI coming on for days before I picked up on the symptoms. One of the main symptoms is pain and other than a vague crampy feeling, I wasn’t experiencing any. Easy to ignore, so I did.

Then some harder to ignore symptoms started happening and my daughter, who I was visiting at the time, said, “you need to go get this checked now.” Left to my own devices, I probably would have taken a wait-and-see approach which would have been bad. Because a few hours later, shortly after getting my prescriptions filled, I was in intense pain. An hour early, at the walk-in clinic, the doctor asked me if I had any pain and, after thinking about it for a moment, I said, “maybe a little?”

My body had gone from zero to “MAKE IT STOP” in less than hour.

And thanks to my body’s poor interoceptive workings, I was rewarded with a kidney infection because unlike most women who dash off to the doctor at those first signs of a UTI, I wasn’t getting enough data to trigger my internal alarms. It wasn’t until I started having more obvious symptoms that I realized something might be wrong and took to Google to figure out what it could be. By the time I started getting the right antibiotics in my body, a common minor ailment has progressed to a potentially serious illness that I’m just starting to recover from two weeks later.

Unreliable Indicators

One of the purposes of interoception is to drive behavior.

Hungry? Eat.

Tired? Sleep.

Pain? Seek help.

Interoceptive sensations–especially pain–may be unreliable indicators in autistic individuals. Medical professionals often rely on pain and other self-reported symptoms of discomfort to assess the presence or seriousness of an illness. In my case, my interoceptive sensations were saying “meh” but my fever (which I didn’t realize I had) and high bacterial count were saying, “hey, big problem here!”

When you combine muted interoception with poor executive function–which may be further impaired by the stress of illness–you’ve got a recipe for disaster. This is why I need someone else to say, “we’re going to the doctor now.” It’s also why recognizing that autistic people may have unique pain, distress or illness signals is important for medical professionals, caregivers and loved ones. This can potentially lead to misdiagnosis or underdiagnosis.

Our nonstandard brain wiring can mean that we miss common warning signs or have difficulty knowing when to act on distress signals.

67 thoughts on “Interoception: How Do I Feel?”

    1. A couple months ago I was hiking by myself, slipped and broke my humerus. I heard it snap. I knew I was in trouble, because the arm was ‘dangling’ helplessly, though it did not hurt. (Much later it started to, but it was a day or so) I knew I was close to passing out, that was clear because my eyes were doing strange things. Luckily, I was able to walk out to locate help, but became extremely belligerent when offered help. (I said some bad words to people!) I was adamantly not amenable to being put on a stretcher by EMT’s, in fact I told them not to touch me, and to call a family member instead. They understood, allowed me to sign a refusal of service from, and quickly left. Got to the ER, and wow what sensory overload there – I kept my eyes closed as much as possible.
      So, I am glad I’m not the only one. Hope you are healing now. I am, finally; and now know what I should do when I am aware of being hurt or have an awareness of pain. It’s not stoicism, it is a disconnect between my brain and my body.

      1. I think you’ve hit on something there about the difference between stoicism and body-brain disconnection. It’s not stoic if you’re just not aware of the discomfort or pain. Also, I totally understand what you mean about the sensory overload of the ER. Last Saturday I spent a few hours there and kept allowing myself to drop off to sleep (thankfully easy due to being so sick) because my brain was tuning in to every conversation and sound around me. At one point the nurse was trying to convert some other unit to ccs and struggling with the formula and I was lying there two beds away mumbling the answer over and over until she finally got it. It was a long afternoon. πŸ™‚

        I’m glad you’re feeling better. Sounds like that was a bad break!

  1. I can relate. I had the throat infection equivalent happen this week (I’m currently home sick and under orders to return if I get “worse” which… uh, yeah. I’m letting my partner make the call on that one because I’m bad at telling whether I’m actually worse or if I’m just finally noticing how bad I feel), and a few years back, I didn’t notice I had orbital cellulitis until my eye was swollen shut.

    1. Yes! I had no idea if I was getting worse and then ended up in the ER last Saturday afternoon because all of sudden I was clearly much worse and got myself signed up for all sorts of poking and prodding. Orbital cellulitis sounds scary. Eye swelling shut is the sort of impossible to ignore symptom that tends to get me to finally notice stuff too.

      I hope you feel better soon. Get lots of rest, even when you start to feel better. Er, you know what I mean.

      1. Orbital cellulitis wasn’t so much scary at the time as disgusting. It didn’t hurt too much, though it did itch a lot, but it felt really disgusting in a way that I can’t really articulate. After the fact, when I read about all the horrible complications that can happen and fully processed my doctor’s offhand, “I’m glad you didn’t leave it another few hours or I would’ve had to hospitalize you, and if your fever gets above this number go to the ER,” that I realized how sick I’d been (common thread for me).

        As for this, I hope I’ve finally started to turn the corner today. As for this, thinking back: I was really anxious and restless for the week leading up to when I finally noticed it, and once I realized my throat hurt, the anxiety disappeared. Sometimes I notice stuff but can’t put a finger on it because I’m perceiving it as something else.

        1. Well, now I’m afraid to google it so I’ll take your word. I know what you mean about having that generally ill at ease feeling but not being able make it gel into something recognizable. Sometimes my husband can help me out by asking the right questions, but sometimes I don’t even get as far as letting him know that something might be off because it’s floating right at the periphery of my consciousness.

          I’m glad you feel like you might be turning a corner.

  2. Tired? Keep learning or working until get sick, or get so tired I cannot sleep.
    Hungry or thirsty? Weak signals, until feel sick, and have no ideea why.
    Pain? I live with a very poor life quality, until it’s unbearable.
    Upset or sad? Just sit in a corner, alone, unable to speak, or explain to myself what’s wrong.
    Happy? Keep talking until I get sick because of dehydration (this is the las experience in the desert, last week)
    I start realizing I have a very low introceptive sensations when I wast 45. Since then, I try to be as aware as possible of my body and mind signals, but it is a hard work, especially when I’m stressed out. Not being able to decode this sensations makes me confused and finally more stressed out. It is the devils circle I can break out only with alot of energy. In time I developed a “check out list”, a full aware excercise, but it’s a very hard work. Even after 10 years I forget all the time to check my body and mind. I should stick paper notes everywhere.
    i use to tell my husband: “this body of mine….it’s so hard to live with. It is like pushing everyday a car that should carry me”. I feel increasingly alienated from my body, which I consider a strange place where I have to live.

    1. I hear ya. Since noticing that I don’t get the same sorts of signals that others seem to get, I’m trying to be more mindful but sometimes it’s impossible. Some signals don’t seem to get through at all.

      Part of what you describe is also related to executive function and how it can be hard to act on the signals we do get until they become unbearable. Last night I was debating whether I needed to take pain meds before bed and my husband said, “if you’re even thinking about whether you need to, then you probably need to.” Which is a good point. I was having enough discomfort for it to be noticeable so that should have been a clear sign, I guess.And there’s also the issue of alexithymia, where we can get our emotional and physical wires all crossed up.

      Your awareness exercise sounds like a good idea. I’d probably need someone to remind me to do it regularly though.

  3. Holy moly! I can relate to this in every direction. My Aspie mother…she waits forEVER to deal with physical issues. She has an extraordinary ability to function when she should be flat on her back. My Aspie husband has a plethora of physical issues from the top of his head to the bottom of his feet…and just about everywhere in between. Sometimes, he over reacts to such a degree that I am paralyzed by my inability to discern if it is a true medical emergency, or his panic at not knowing what is happening within his own body. I am his interpreter of almost all things emotional as well as the physical. (For example, at some point early in our relationship, he was having major gastro distress. I asked him what he had eaten the night before, and he looked at me strangely. Why? What difference would that make? It had literally never occurred to him that if he ate a particular food, that it could cause an upset in his system a few hours later.) What you are saying takes it one step further. I had never thought about the overlapping of the physical and emotional causing confusion for him. I just take it for granted that, when in an intense conversation, if the emotion is anger, I get very, very hot and sweaty all over. And if the subject causes fear or extreme anxiety, I get very cold, especially in my extremities. He may have never connected these physical responses to his emotions. Or vice versa. Wow. My mind is working in overtime! I have come to know my role in interpreting things for my husband. However, it has been more difficult with my Aspie daughters. An infant cannot tell you anything. But once my oldest Aspie had language, she became SO aware of physical sensations, she appeared to be a hypochondriac. She was always sick and always in pain. Others thought I babied her too much, but I chose to believe my daughter and defended her. Most of her complaints led to legitimate diagnosis of treatable issues. My youngest Aspie is the total opposite. She seems to have no “plug in” to what is happening in her body. Until she was 8 years old, She never knew she was going to throw up. She would sometimes say, “My neck feels funny.” A moment too late, I would comprehend. I cannot tell you the times she would be behaving erratically, and after hours of frustration, I would feel the heat radiating off of her…a temp of 104. This happened most recently during her ninth birthday party. She started screaming over something small, and when I touched her, she was radiating heat. She started grabbing her head. It was the first time she had ever communicated
    a headache. And she had an extreme temp. It is frightening enough as a parent to not know how to answer an infant’s cry. But, what you are saying, explains why it has never gotten any easier as they have gotten older. It also explains why my husband consistently panics when anything causes one of our children to cry. My approach to any emergency with my children has always been to be utterly calm. When they were little, if they fell, I would comfort with my words and hands, down on their level,, but I would watch carefully to see if they could get up on their own and crawl into my arms. Then I would know that broken bones were unlikely. Children cry out of fear as much as pain, and so I have always taken my time to assess the situation, sorting out actual injury of body from injury of pride. My husband, however, has never been able to do anything but panic and want to find a phone to call 911. I have had to coach him through these situations. Now, I understand why. It had never made much sense to me, being that he is typically a cooly logical sort of guy most of the time. So, thank you for sharing this. I literally spend most of my time trying to interpret the world for three of my family members…or how to reduce, or, at the very least, understand the triggers of anxiety and sources of torment and frustration. It is a big job, and any insight to their experience of the world is extremely beneficial for all of us.

    1. Oh wow, that’s awesome that this led you to an “aha” moment for your family. Objective measures like fever or blood/other biological tests seem to be more reliable indicators for a lot of us. When I tore my ACL, the ER doc said I couldn’t possibly have torn anything because I wasn’t in enough pain. He was completely wrong but very confident that he’d made an accurate diagnosis.

      It sounds like your daughters have very different but still dysfunctional pain “processing” systems. It’s good that you’ve learned to spot the warning signs and read their unique signals. You make a great interpreter for your family members. Even as an adult I find that I need a “second opinion” of exactly the sort of interpretation you’re talking about, even when I’m reluctant to admit it. It’s a strange day when your child is the one insisting that you make a doctor’s appointment. πŸ™‚

    2. *nods in understanding and agreement*

      I’m… pretty aware of my body. I was actually a lot like your older child (see the posts about hypochondria on my blog), and stress and emotions tend to translate themselves psychosomatically (AKA they produce physical sensations and tension). That’s what the other side of interoception is, I think – psychosomatic issues!

      The thing is, I tend to feel things, but ignore them until the signals start shouting at me. Which makes it hard to tell when I’m heading for a sensory overload!

      Hm. This seems worth a post of my own.

      πŸ™‚ tagAught

  4. Where this trips me up is when I finally get that something is wrong, go to the doctor, and they ask “when did you first notice” whatever. When I tell them the truth (which could be “two weeks ago,” if there had been a million things vying for my attention) I usually get side-eyed and questioned about “so why are you just now doing something about it?” And that leads to an icky cycle of searching for an acceptable explanation and feeling really dumb for not taking action sooner. Fortunately my regular GP will accept “I was busy” or “I don’t know” without assuming there’s more to it than that. But docs that don’t know me…that’s been really problematic, since some have assumed I couldn’t have been that bad off, because any “normal” person would have sought help way sooner.

    Migraines used to always take me by surprise, which drove me nuts, since the warning signs were always the same, and I just didn’t process them correctly until they were full-blown. Led to many “D’oh!” moments.

    1. Yes! I’ve gotten some odd responses from doctors over the years and I think this part of it. The whole, “why did you wait so long and how could you not have noticed” aspect of it. I can’t tell whether they assume intentional neglect or maybe some sort of faking to get meds, in some cases? There’s a note of disbelief and sometimes doubt that creeps in when you don’t present them with a textbook course of symptoms.

      I was tempted to try mentioning that I’m autistic and sometimes have difficulty knowing exactly what’s going on with my body but it didn’t seem like the ideal time to be experimenting with that kind of disclosure. I’m curious to know how saying that might change a doctor’s reaction, if at all.

      1. *nods thoughtfully* Oh, I hate that question: “When did you notice?”

        Um… hm. When did I notice? A week ago or so? I don’t remember? Something like that?

        Hear, hear! I agree with all you say.

        πŸ™‚ tagAught

    2. Please remember that the ‘if you’ve had this for two weeks then why did you come today?’ is a valid question that often yields a very useful answer – a new and important symptom, or an underlying anxiety ‘ Well I asked Auntie Maud this morning and she told me her cousin’s neighbour’s sister had the same thing and didn’t see anyone about it and dropped dead’ that needs explanation and reassurance.

      We don’t ask to make you feel bad.

      1. Oh, I get that it’s a valid question. I’ve asked it myself in my professional role many times.

        But for me, I stress over it because the “best” answer may be floating around with a dozen extraneous reasons (I got distracted, I didn’t know who to call so I put it off, I didn’t know if my perception of pain, discomfort, etc. was the “normal” perception, I didn’t feel like interacting with anybody on my one day available this week to see someone, I didn’t do the math that this was the 3rd time in a month this happened…or just a global “I don’t know” and I don’t know why I don’t know) and then I’m focused on not looking stupid. Not the best frame of mind to be in when seeking help.

        To be clear, I’m not looking for a fix or a justification for this, I’m just saying I don’t like it and feels yucky and stressful. And please don’t take this the wrong way, as I’m sure it’s not intentional, just rhetorical, but your last sentence is bothersome, I don’t know how you’re defining “we” and “you” but it feels like you’re making assumptions, and it came across (again, could just be me) as somewhat condescending.

        1. Maybe sometimes–as someone just said in a comment on another post–a duck is just a duck. It’s hard to feel like not only are you ill and in need of treatment but you’re being asked to justify executive function wonkiness on top of it. It sounds like your regular GP knows you well enough to know that this is something that happens with you and is able to focus on treating the symptoms that you have rather than expecting too much in the way of explanation. Also, the explanation is probably often “I’m an aspie” which isn’t new information. πŸ™‚

  5. I have had experience with many on the Autism scale – including myself…and I do find this to be true but also the opposite. I am the opposite and so is my son. I am in the medical building usually a day to soon…and always have to come back. They tell me I am fine and I tell them exactly what I have ( from strep to a bladder infection to anything…)The next day or so I am back and they feel bad for not listening because it is full blown. It makes me upset because I could prevent half of my pain from treatment but they will not listen until there are more serious symptoms…But I KNOW my body. I KNOW my kids body too. So I guess I am opposite minus being hungry. I can’t tell I am hungry until I am starving at times…If I have numbed it enough. But most times I am like that chapter in Aspergirls by Rudy Simone where I am too in tune with it and I have to half does everything because my body is too sensitive to it.
    So I think there are the two extremes on the Autism scale and I have met both:) Both are tough in various ways…
    The problem for me is short term memory. I will know every detail of when I am sick but I get them mixed up when speaking to a professional…so sometimes I just write symptoms of me or my child on my iphone. Right now I have a UTI too and I often can also get kidney infections. I actually have a vial of Plantago Homaccord from the Naturopath and whenever I feel one coming on I use the drops, take some cranberry pills and drink…now usually I do not have to go on antibiotics which I have been on a lot in my life but am VERY sensitive to the side effects.:) I hope you get better soon!

    1. I agree with Kmarie, I am extremely sensitive to lots of things, especially pain. I have had chronic illnesses since I was a child, which helps in a way as I have always listened to my body and if it is something I have had before I usually know as soon as I get that first ‘tingling’. I went to the doctor a few weeks ago because I could feel tingling and pains in my lungs but knew they’d think it was my heart (middle-aged diabetic). I couldn’t get an appointment at my specialist or my doctor but both receptionists rang back within ten minutes with appointments for me because apparently I only show up if I’m really sick (we have a great system here, I am very lucky). I had no temperature or coughing, but was sent to hospital for an x-ray and they saw I had pneumonia – several hours later I developed the temperature and coughing.
      But, it’s when it’s something new, or I am stressed by other stuff I forget all about my regular illnesses and don’t realise until it’s developed into something that needs serious treatment. I usually have just gone to bed feeling incredibly tired and lethargic.

      I also remember telling the doctor how I woke up and felt as if my blood pressure was really high (I took a reading and it was high). She said I couldn’t know that because people don’t have symptoms of high blood pressure – I thought maybe some autistics do but no doctor ever pays attention to what they say!

      1. Yes Jo! I have had the EXACT experiences. Same with my Aspie son and daughter. It’s strange…and you are right- Doctors do not pay attention most times. I am lucky enough that they too know me mostly and get me in because it is always something “real.” And we do not have typical symptoms either. We never get fevers with serious infections…so they say we dont have a fever and we are fine…but then they check and we have perforated ears or acute strep.
        And you are right- when I have not had it before that is when I can get it confused or panic…and when I am overwhelmed with sensory data then I can get signals mixed up. I have learned my trigger symptoms to sensory stuff though and the Book “too loud, too bright, too fast, too tight” really helped me decipher what is bothering me. Now if I am in the mall and suddenly feel ill or at a restaurant I have an “Aspie bag” (from aspergirl suggestions) with comphy stuff, sweaters, headphones, music, lavender mist, and things that comfort me in my car. I go to my car, use what I need, take a few minutes and then I am fine again. I realize it was a tag that was bothering me all day and overloading my nerves, or lack of water that made me dizzy and cranky, or not peeing that gave me cramps and frustration, or the loud noise that made me want to puke. I know the difference between illness and overload if I do everything that makes me at ease YET it still feels bad or gets worse…then it is an illness…:)
        But I have some friends who are the opposite and are more like this blog (on the autistic scale) so I get that too:)
        There is some great tips for antibiotic usage and naturopathy in some of Temple Grandin’s work, Rudy Simone’s and other books from Jessica Kingsly Publishers or the Asperger’s/ Autism Publishing company:)
        This post was great! Thanks for giving a different perspective for me to digest!:)

        1. Interesting! Was just re-reading this post and the comments, and this is the first time I noticed your comment about never getting fevers. Which is interesting to me, because I’m the same – I never get fevers even with the flu or colds or anything. My temperature tends to be slightly on the low side (except when I’m dealing with my screwy thermoregulatory system, and even then it might not show up “outside”, just “internally”), but I can’t remember the last time I actually had a fever, if I ever did.

          πŸ™‚ tagAught

      2. I’m kind of astounded at the kinds of serious illnesses we can all come down with and not have much in the way of symptoms until it’s really serious!

        Is it really true that there are no symptoms of high blood pressure? I feel like I can tell if mine is very high (it’s normally a little below average) – things like feeling tension in my head and warmer than usual and an elevated heart rate all come to mind. Is there a specific feeling you associate with higher blood pressure?

        1. This is all fascinating πŸ™‚ Thank you everyone.

          And yes, (although I guess you’ve looked it up by now!) high blood pressure is called the invisible killer as most people don’t experience any symptoms until they’re very ill from it. And my blood pressure is usually normal/low yet when I woke I immediately thought “My blood pressure is way up!” and I took a reading – it had never been high before that I know of and I’ve never felt like that before either. And my symptoms were headache, slight dizziness, a high-ish heart rate for resting (it was 103) and I felt this internal pressure pulsating through my body…
          Our bodies and physical responses would be very interesting to study. Do you know of any research that has been done on autistics?

          1. Well, I googled hypertension and your symptoms are textbook for those people who do experience symptoms, which is apparently not very many. I’ve never seen a study like the one you describe. Research about autism in adults isn’t very common and it often focuses on things like quality of life and social aspects of life. I would love to see something like what you describe but it may be decades before anyone gets around to doing something like that. :-/

    2. I wonder if it’s the case that you’ve learned to recognize atypical symptoms because you don’t have typical symptoms? And without typical early symptoms, doctors are just puzzled. For example, I was exhausted for a week before I ended up going to the doc. But without anything more concrete, I don’t think they would have known where to start looking for a problem and certainly UTI would have been so far down the list it probably wouldn’t have registered. I guess what we all have in common is atypical sensory processing systems that make it harder to navigate a medical system that has pretty standard expectations for how an illness will run its course.

      Writing down symptoms is a great idea, especially if you’re going to have to explain them to multiple people. It’s easy to leave something out in the short time we generally get with a doctor or nurse.

  6. OMG thank you so much for this blog. I have never realised that this had anything to do with my aspergers. It was another of those OMG moments for me, when another puzzle of my life falls into place. I eat rubbish because I don’t realise i am hungry till I’m almost passing out and then I need to grab something to eat quickly. I almost have to hit myself over the head with a hammer to go to sleep because my brain doesn’t recognise it. My brain also doesn’t bother telling me I am thirsty and I won’t be able to talk because my tongue is glued to my mouth. Hay ha…many thanks…once again I am not crazy, I’m aspie πŸ™‚

    1. Oh, I’m so happy to hear it was an aha! moment for you. I have the same problem with eating. I can crash really quickly if I let myself get too hungry and then I’ll be too tired to make something decent and end up grazing on fruit or something easy. Which I guess isn’t too bad, but it’s not quite dinner either. πŸ™‚

  7. Once, when I was hanging out with some friends, I was feeling dizzy but I dismissed it as being tired and made myself keep on going. That night, I had a fever. Other times, I can feel all kinds of sensations and different levels of pain that I have absolutely no idea which one is really bad because there’s way too much sensory information going on and no way to filter it. So I compensate by asking someone or obsessing over it.

    1. Fevers are hard to recognize, aren’t they? Maybe it’s because we have basically screwy temperature controls? Asking someone seems like a good strategy, assuming it’s someone who knows you well and isn’t going to find the question wacky. πŸ™‚

  8. Thanks for writing about this, it’s one of the ones on the list for my new website, which I never get around to actually putting anything on due to work and executive function, so I was really pleased to see you tackling it so well πŸ™‚

    My experience of interoception is very mixed, making me feel that it isn’t a single sense but a combination of many sensory factors.

    Are itch and sensory touch from your illustration actually interoception at all? My OT has those listed under tactile processing and I’m over-sensitive to both.

    I’m most definitely over-sensitive to pain and so I’m hyper aware of any internal sensation that involves pain, generally anything connected to my digestive system going wrong.

    However I’m ridiculously under-sensitive to hunger, thirst and when I’m having an asthma attack. I have to be genuinely feeling like I’m about to be sick or experiencing stomach pain to notice that I’m hungry, by which point feeding myself feels like force feeding (this is why having a routine involving meals and snacks is so important). I’ll also usually get a headache before I notice I’m thirsty and often I won’t even notice then and think I’m having some sort of emotional problem. Asthma I tend to notice when I move from sitting down to doing something else, usually it’s taken so long that I have accumulated gunk on my lungs and have a cough that the inhaler won’t shift.

    Bladder is an odd one. I can forget to go to the bathroom for hours, especially first thing in the morning, but if I’m in a moving vehicle I become hyper-aware of it.

    The oddest one for me is heat – my body has the full on opposite reaction it should to heat meaning I often put the heating on higher or add more layers of clothes before I realise that I’m actually too hot. I can also confuse overheating with tiredness (being unable to think clearly and being tired seem mixed up for me). The extreme of this is when I get into bed fully clothed and wrap myself up tight in the duvet and go to sleep, only to wake up two hours later absolutely drenched in sweat and feeling utterly terrible. When I’m overheated my brain doesn’t work well and I struggle much much more with executive function and autistic inertia, so this is a really bad instinctive reaction for me!

    I definitely relate to the connection with emotions. The potential for mix up has only got worse since working with the Asperger Team on emotional awareness. I’ve had a couple of times when I’ve made myself extremely distressed by realising I felt bad and so thinking of all the reasons why I might be emotionally upset, dwelling on all the bad things, then ultimately realised that I actually just needed a snack or to take a layer of clothing off. I’ve actually gone to the point of making a list in my to-do list app of all the simple things I should check before I decide that I’m genuinely emotionally upset, which has been helpful in preventing this snafu.

    On the other side of the emotional mix up, I can sometimes suddenly become emotionally uncomfortable and then become aware of all the other sensations I haven’t been tuning into.

    Hyperfocus makes me much less likely to notice sensations from my body, while struggling to concentrate on something I’m not interested in is likely to make me think about my body and so procrastinate with drink making and snacks (which I’ll then probably forget to drink or eat).

    I wonder, does anyone else have these opposite or illogical instinctual reactions to sensory input? Like it’s not that you’re unaware of senses, it’s that you feel them but need to think very logically to stop yourself doing the worst thing in that situation? I suppose my tendency to stay where I am and not be able to leave when I feel unsafe, or to bite myself when I’m in a lot of pain are similar ‘backwards’ instinctual reactions.

    1. Queries: you just explained my life. ESP in relation to digestive issues which are the worst for me and put me on low functioning very quickly in regards to executive functioning… I can’t do much when my inner system hurts. I am the same way with heat and overcompensating as well as biting my tongue or scratching my arm to re direct pain.
      As for awareness like I mentioned in a previous comment- the book too loud, too bright too fast too tight helped me with my sensory awareness. I now can generally decipher when it is a tag or heat or whatever earlier than I ever did before. Maybe it’s just practice? I have had at least five good years to get used to sensory perception. After awhile it starts to get a bit easier. I still forget tho and often have to re learn what I’ve learned or re apply… But I completely related to your full experience too.

    2. From what I’ve read, there are different models of interoception and the concept has evolved over time. It started out as encompassing the visceral organs and has since been expanded to include the things listed in my graphic (though of course there seems to be some dispute over what does or doesn’t belong in the model). I think sensual touch would be more properly termed arousal which feels more purely interoceptive and not touch dependent. Itch is maybe the same – could be due to tactile irritation but could also be internally generated like poison ivy or a yeast infection (shudder). Interoception in the purest sense is all internally generated signals, processed by their own efferent system, which is separate from exteroceptive processing. That’s what I gleaned from my reading, in a nutshell. If you like, I have a couple of articles I can share with you that I used as background.

      That’s really interesting about your temperature processing. I have dulled sensitivity to heat and have to be sweating to notice that it’s time to do something about the ambient temperature. But once I notice my response tends to be appropriate. I’m happy someone else with similar responses commented here so you can compare notes.

      I smiled when you mentioned about making snacks and not eating them because I often see your Twitter updates about various cooking and eating crises. πŸ™‚

      Things like checklists to sort out physical/emotional symptoms are a really good idea, especially once we learn how our bodies work and can develop a sort of flow chart to narrow down what might be wrong. It feels like executive function plays a big role in these issues, maybe even bigger than the underlying sensory processing issues.

  9. What if a sensation needs to be in the red zone before it comes up on the dashboard?

    Great metaphor… I imagine if the “Low on Fuel” lamp in my car’s dashboard meant there was only 1 ml petrol left in the tank… Or “Overheating” 1 sec before the engine started to melt. Not helpful:-)

  10. Wow. I can so relate to this. I recall as a little girl, about 8 years old, I had gotten into the car, sat on my dad’s lap, and my hand was closed in the door. I had no idea until my face itched and I couldn’t pull my hand down to scratch it, about 4 blocks away. I also often can’t tell straight away if water from the tap is too cold or too hot. I often confuse the two for a bit, then realize my hand is burning!

    I have been known to forget to eat. I’ll get weak, too weak to cook a proper meal, then end up eating ice cream or any other simple something I can throw down the hatch. I now keep Cliff bars at the ready to give me the energy to cook after I’ve skipped two meals due to hyper-focusing on writing, an art project, or anything my brain starts to dissect. ;^)

    Great post. Thank you.

    1. Oh my gosh, that sounds terrifying! I often find myself getting too hungry to cook too, especially if work late and don’t notice I’m hungry until it’s long past my usual dinner time. Energy bars are a good idea to boost your energy, especially if you haven’t eaten all day and are feeling weak. I may need to try that.

      Glad you enjoyed the post!

    2. That’s funny about the Cliff Bars, I do the same :p I get so lost in what I’m doing, often something completely unimportant. My husband has to remind me to remember to eat dinner sometimes. Weird thing is, I feel the hunger pain, I just don’t do anything about it. Like its being shoved down below conscious level, or like it’s the last thing on my list of priorities. So when I can finally draw myself away from what I’m doing, to weak or too late to cook myself a proper meal, I pig out on chips and cookies. I’ve gone whole days without eating anything but some string cheese in the morning and coffee.

  11. OMGosh, I just did the same thing… I went from zero to kidney infection out of thin air, and only after was able to reflect, “Oh, I guess I haven’t been feeling 100 percent after all…”. My theory is that, as it is summer, my water intake is less than sufficient to my body’s needs. Likely, I’ve been mildly (i.e. unnoticeably) dehydrated for several weeks. I’ve been hyper-focused on work, and I don’t like having to stop to pee. Also in hindsight, I realize that I may not be able to perceive thirst very well. Like my cat, I get thirst confused with hunger. Furthermore, as I have not been feeling 100 percent, I have become increasingly reliant on caffeine stimulants (Monster energy drinks) to help me focus and “get through the day”, thus furthering my body’s hydration imbalance.

    HISTORY:

    Illness and infection denote a state of severe imbalance in our internal bodies. Our distant ancestors did not have antibiotics to protect our kidneys from damage, and throughout the ages, this type of infection (Bladder Infection–>UTI–>Kidney Infection) quite possibly killed a great number of women (the more anatomically susceptible of our species). Antibiotics and our accessibility to medical care diminish the significance of this type of infection; it was once of life or death importance! Our organs are living organisms, and we must remember to give them care–especially because we cannot see them! Unlike my cat, they do not meow incessantly to remind me to queue me to respond to one of her vital needs. Or do they?

    All of this to say: it is especially important for us to learn the art of self-care to prevent severe imbalance that tax, age, and pollute our internal body. Drinking enough water daily is a life or death survival skill. Forgetting to eat occasionally is perfectly fine. Forgetting to drink, however, is toxic.

    STRATEGY:

    Recently, as part of my goal to develop a habit and strategy for increasing my daily intake of water, I bought a filtered water bottle by Camelbac. Part of the reason I allow my body to become dehydrated is that I don’t like the taste of tap water. I like bottled water (especially Fiji), but only purchase bottles occasionally due to the waste effect on our planet. Finding this filtered Camelbac has been a goddess-send! It allows me to drink water continuously throughout the day, and I am gradually increasing my daily water intake from none to between one and two bottles. Still room for improvement here. I also have to remember to take breaks. Holding urine in the bladder contributes to infections. Drinking a glass of water (or a tablet of Emergen-C dissolved in a glass of water) post-intimacy is also a preventative strategy. Daily intake of probiotics to support the female system (including the urinary tract) is also a strategy.

    Thank you for the post!

    1. Your first paragraph sums up what I think happened to me pretty accurately. Of course now I’m hyper vigilant about being hydrated. Not sure if that will last but I’ve certainly learned a lesson. The thing that I think pushed me over the edge was running an hour in the heat/humidity when I was already fairly dehydrated from traveling, etc.

      Your tips are excellent! I love it when someone adds this kind of information to a post for other readers. πŸ™‚ On an average day I drink a few glasses of water, but sometimes that falls by the wayside when I’m really engaged in something. The Camelbak with the filter is a great idea. I didn’t know they existed.

  12. Thank you so much for this post. I feel like interoception is a very important aspect of sensory processing that is still not quite fully understood and is not very well addressed in treatment either. I myself am looking for more ways to address this with clients I work with so if you or anyone else has resources I can look into about interoception and how to address it with a sensory integration approach, I would really love to hear about them! Thanks! Contact me at: http://www.sensorysolutionsinc.com.

    Andrea

    1. Most of the articles I found about interoception were very recently published (within the last 3 years) so it seems to be an area that’s still developing. Have you done any work with mindfulness as a way to increase sensitivity to interoceptive sensations? I’ve had some luck with that, as well as with getting others to prompt me to actually act on what I’m feeling rather than just talking about it. πŸ™‚

  13. I would love some help/input/suggestions regarding helping my son with this kind of thing – I don’t know for sure if this is an issue, BUT this post got my radar pinging a bit.

    I’m the NT mom of a PDD-NOS 6 year old first grader. He’s a sensory seeker, very verbal, communicates pretty well. But I think he may have issues with this. Generally I don’t think he reacts to pain much, but when it’s sudden – like a scrape in the play place or a stubbed toe – holy cow, the reaction is kind of over the top. Then he’s fine a minute later, like a switch turns off.

    Also, we have minor bathroom issues. TMI ALERT _ He potty trained very well at 3, but in kindergarten he had issues with encoparisis (constipation/leakage). He really seems to not know he has to poop until he HAS to poop. Is there ANY way to help with this other than “scheduling” potty time? It’s usually not a big mess, just more than a “skidmark”.

    What do I need to look out for with Interoception? Would his pediatrician be any help? Or his OT at school? I never heard of this particular issue till now. How can I start to “train” him to be aware of his body? Is that even possible?

    Thank you very much!

    1. Hmmm, you may be able to help him become more aware of his internal signals over time, but it’s really challenging, even for me as an adult. Does he express to you when he’s too hot or too cold or tired or hungry? Or does he seem to not notice until you notice that he’s shivering or cranky or some other visible signal?

      My husband has been helpful in saying things like “you look cold” or “you seem tired” to help me tune in to my signals. That may be a place to start for your son, just helping him check in regularly with his body to see how he’s feeling. You could also talk about things like how it feels to be hungry (tummy growling, achy) or in pain, if he doesn’t seem to be picking up on those types of signals. I know it sounds like it should be obvious, but it may not be. It’s also important to keep in mind that if he seems sick but isn’t complaining of any typical symptoms (sore throat, stomach ache), that may not mean that he doesn’t have strep throat or the flu or whatever. I know autistic people who have broken bones and not noticed until later.

      For bathroom habits, scheduling regular visits can be a huge help. He probably doesn’t know that he needs to go until it’s too late or he may just not be getting the internal signals at all. And if that’s the case, I can’t think of any way to turn up the volume on those internal signals so an external prompt may be the only work around at this point.

  14. I can totally relate to this, though I don’t know if its so much an issue with interoception or my inability to communicate properly with my doctors. I’ve experienced chronic shoulder pain for 7 years, and it’s just getting worse & worse. I tried several times explaining it to my doctors, and it took them a year to finally understand what I’m feeling and to what extent. Had some x-rays and it turns out I have a displaced collar-bone due to injury. Obviously a very old injury, but I can’t even recall a time where I would’ve hurt it in such a way. Perhaps that is some form of interoception :p I probably could’ve gotten this handled sooner though were I not to shut down when speaking to doctors. Glad your kidney infection was handled just in time.

    1. Wow, having a displaced collar bone for that long sounds very painful and also a great example of why it can be so hard to get proper treatment when your body is sending atypical signals to your brain and medical professionals aren’t able to understand the severity of it. :-/ I you’re feeling better now that the problem has been identified.

      1. O yes, just knowing why it hurts is a huge relief. Though the whole ordeal is discouraging. As an undiagnosed Aspie, I’m afraid of seeking diagnosis just because I know that communicating what & how I fee is so hard, especially to doctors. I’m afraid they’ll just think I’m crazy or misdiagnose me. I wouldn’t feel like this toward doctors is general if I had had better experiences communicating my issues to them in the past. Not only are getting my thoughts out a bit hard, but I always procrastinate about seeking help and shrug off the pain or discomfort until its intolerable, and then try convincing your doctor that you’ve felt this for a while but you’ve only now thought to do something about it. It’s all so exausting. But I guess its good we are aware of such things about ourselves.

  15. Not feeling pain is dangerous because it leads to such situations, but being oversensitive to pain, the way I am, can be a serious pain in the neck. I cringe before a blood test, and then rub my shoes on the floor back and forth, eyes closed, wincing. But when I fell down the stairs and hit my head, or when a shelf with books fell on my head, I barely felt it.

    Some aspies suffer from numbness, and some have the opposite problem. I flinch when a tiny grain of dust gets in my crocs. It hurts when I step on it. I try to take it out, but it’s too small for the eye to see. The princess who felt the pea was also autistic, I think. I search for the grain of microscopic dust with my very sensitive hands and get it out.

    I feel as if I’ve got orange peel glued to the top of my fingernails whenever they start growing, but they’re still too short to cut. I love the lightness after using the nails clipper.

    And I know when I’m hungry all too well because I feel everything so much intensely. This is no fun either.

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