Thank you. I am a late diagnosed autistic woman and I have found that to be the case for me. I experience pain worse and it baffles my doctors. I'm so sensitive to pain. And my chiropractor is always amazed how "in tune" I am with my body as far as being aware when something is out. Thank you for this video.
Me Also, 70 y.o. diagnosed with autism not long ago. Always knew since a child I was different. When I have pain it’s like torture to me, very difficult to function at all. My adopted mother very rarely felt pain in her 90 year life, or if she did she never said a word. Is that a Norwegian thing? A few weeks ago I asked my dentist after he cut a V in my gum to do a filling under a crown if I could have 2 Vicodin incase I was not able to sleep. If I don’t get sleep I’m really a mess.This was after he told me I would have some pain for a few days. I told him I don’t do well with pain. He told me to take Ibuprofen or Tylenol, I have kidney issues my Dr. said never take ibuprofen ( this has been my go to for pain for many, many years of having a very physical job 40 years BTW. Tylenol never worked. As he walked out I said “ Ok fuck my kidneys then “ it’s been over a week now and still having pain. I have no trust in the medical field and now also the dental field. They have no clue at 30 years old how it feels when you’re 70. I worked for a large HMO for those 40 years that broke my back. I was a contortionist in their medical records department working with heavy paper charts from floor to ceiling, many long rows of files approx 80 thousand charts back in the 1980’s. Now 4 years of depression uncontrollable still trying to find an antidepressant that works, had been under control for many years until my also autistic neighbor started harassing me. He had a major heart attack a year ago or so and is dead now. My stress level is over the top right now. Benefits are great after retirement but pretty useless in my opinion, unless you’ve been in a car accident or have a heart attack that you actually want to live through, they just want to do all the preventative procedures that you may or may not be the same when their done, nope don’t trust that either. I’ll take my chances without your preventative bullshit. Life’s too hard after years of bullying, but at least I know why now.
Do you have ADHD heds to diagnosed CFS fybromyalgia chronic migraine check out Dr lenz do you have OCD our brain is different late diagnosed 44. Do you have fybromyalgia pain and howmmuch is autism burnout
I'm autistic. I go non verbal when I'm in pain and completely focused. I can't hear you, i can't respond. I just focus on riding through that wave of pain. For me it makes absolutely no difference where i am or how happy or sad i am when experiencing pain. I have lots of kids and it wasn't a happy pain it was just pain. I have a very high threshold. As in being about to have a baby and midwives don't realise until baby is suddenly born. Or walking around on a semi dislocated ankle or carrying a 2 year old with a chipped elbow bone, bursitis and ripped tendons. Yet i had a sore lip last week and it really bothered me.
This is really interesting. I'm autistic and I have a really high pain tolerance. I also can communicate when I'm hurt pretty well, but when I was a kid there were times I got hurt and didn't realize for a while or at all. I actually broke a finger and it healed without me realizing when I was 10 years old. I knew it hurt of course, but never realized anything more was wrong and never said anything. I did relate to the thing about pain lingering though, I definitely experience that when I get a shot or blood drawn. Now that I'm older I can recognize when I'm hurt pretty well and in general I have pretty good awareness of my body. Part of the reason for that is that I want to be a doctor, so I've learned about a lot of injuries and anatomy, which makes it easier to see in yourself as well.
I'm so impressed you are looking to be a doctor. What a brilliant way to use your passionate interest! Please do, we need you to help translate into autistic speak!
Before I got diagnosed with autism and ADHD, I've had problems with being addicted to opioid painmeds. They allowed me to suddenly do what I wanted to do. I was only when I started using them that I realised I experiences fysical pain at all times every day, which claimed such a big part of my brain that it crippled my cognitive abilities. But being neurodivergent, I could not seperate pain from anxiety, being sleepy, hungry or having to go to the bathroom. All I knew was that whenever I stopped taking the painmeds, The feeling of fysical discomfort would become so intense I would burnout.
Thank you so much for sharing that, Loek. That must have been so hard. What is it like for you now? Have you been able to use that knowledge to help reduce the pain?
@@adifferentjoylivingbetterw4972 As hard as the depression/burnouts in my life have been, they have also always been the "reset-button" to be able to break out of bad patterns. Once you're at the bottom, you can only go up. Being connected to my body is something I practice now. I set alarmclocks to take moments to sit and simply feel my fysical senses. It is only then that I realise what specific discomfort I have, and I can act on it. Short mindfull exercises help in those moments. My pains increase in a psycho-somatic way, so relaxing my muscles already helps.
@@loekverheijden2499 so interesting I have fybromyalgia now diagnosed Asperger's hypomobility I've had CFS pots before looks like all same thing pain been he'll so have you got your pain in remission do you think your pain is burnouts.neurosthensia
Man, this story could have been written by myself. I relate a lot! Hope you're doing better now. Personally for me, I'm doing much better now. What created the change for me is that at a certain moment I was just SOOO done with letting my digestive issues control my entire life. I realized that eventhough I kinda was a victim, feeling like a victim is NOT going to make things better. Ownership is the answer (atleast it was for me).
this is very interesting to me and I hope they study the link between pain and ND. I also was a opioid addict for years before I was properly diagnosed with ADHD (under investigation for autism). I didn't like to feel high but it actually made me feel normal, like the pain of existing in such an overstimulating harsh world was bearable. I have been sober since 2017 and ever since I got treatment for ADHD I NEVER think about using opioids. but the pain is still there and controls my life. plus now that I'm older I have physical health issues plus chronic ones like endometriosis, pudenal neuralgica, abdominal adhesions.... I get zero medications to help with my pain bc of my past and bc of my diagnosis and nobody believes me that I'm in pain.
My daughter and I are both ASD and ADHD and we can go nonverbal when we get over stressed, I just cannot form words and stammer terribly. We have come up with a set of about 10 hand gestures such as thumbs up for yes or ok and thumbs down for no. These situations tend to happen when we are out and about and are often accompanied by shaking, sweating, unsteadiness so one of the first questions we always ask is "Do you want to go home?/get out of here?" If she doesn't ask me this, I touch her arm to get her attention, tap myself on the chest them make a swimming fish movement with one hand away from me to show I need to get out NOW! A thumb to the lips with the rest of the fingers curled over and the little one extended, then tipping the hand up means drink, two fingers to the lips, food. Shading the eyes - lights are too bright, I need somewhere darker and so on. My daughter is also a type 1 diabetic so that is why we have the questions about food and drinking, because if she is starting to have a hypo/hyper, the shaking etc can seem similar and I ALWAYS check her blood glucose when she goes nonverbal incase it gets too low or high and I need an ambulance.
What fantastic use of hand signals. Anything that helps you both to manage difficult sensory or social environments and her diabetes is fantastic. Well done, you!
I have a high pain threshold and a high pain tolerance. Causes me some issues because of the fact that I don't really know something is seriously wrong. Examples: Appendix that was about to burst (that I didn't know until surgery), broken tailbone (didn't know until the next day), uti that turned into a kidney infection that was one step away from sepsis (doctor was surprised that I wasn't in more pain)
This explains most of my life! I could never figure out the many “faces of pain” scale. I start acting up before I recognize the pain 😢 then don’t get my pain managed because I cannot tell them what level compared to breaking my back or birthing a child lol The faces don’t make sense to me
I have high pain tolerance but a low pain threshold. I feel pain very easily but it doesn't bother me unless it's a toothed ache. They hurt like hell. I could give birth every day of the week or break a leg but a rotting tooth. In fairness I did leave it till it was excruciating beofre going to the dentist lol.. which probably shouldn't.. my friend has autism and she is always in agony and has no core strength she's got that floppy body thing and her brain doesn't seem to be connected properly to her body to control her movements she constantly arches backwards and I'm trying to find out info to help herm she was diagnosed autistic as a child.
@Therealhtrinity yeah its not helpful I don't think. It would make more sense to have an injury picture to me. Pain is so subjective. It doesnt tell you how bad an injury is. They really need to look at or for injuries rather than asking the person..my mom gets this electric shock pain thing..I've had it a handful of times. It's shooting horrible pain but nothing is phsyical wrong except nerves are firing wildly. And then she broke her hip and was trying to walk upstairs on it. So like asking her her oevel of pain would not have helped. Broken bones also don't feel half as bad as a paper cut.
I've broken bones, gotten cuts, had shingles twice and much more, without even blinking. There are so many times I've noticed bruices all over my body and I have no idea where it came from since I don't remember banging my body parts into anything and it never hurts. The only reason I sought help for my broken bones was because I either couldn't move that part or it was super swollen. Doctors thought I had damaged some nerve or something. The worst pain I've ever felt was dairy allergy reaction. The abdominal pain was 100 on a scale from 1 to 10. It was so bad I passed out from it. I now have ME(/CFS) which causes nerve, muscle and joint pain. My pain tolerance has been lowered a lot, but it's also to the point that i'm so used to it that should I hurt myself I wouldn't even notice (case in point: shingles #1. The second I noticed because I knew what to look for - the itchiness).
I cannot agree more! For example, I feel hungry only when I am reaally hungry, like after 7/8h + since the last meal. But, I know I am hungry if I feel nervous, anxious, cannot focus on anything, angry, and I check the time and I know last time I ate was 4/5 hs ago. Since I am more aware of this, my life became more bearable. Eat sometimes guys!
My midwife was absolutely certain I wasn't in labour up until 15 minutes (!) before my son was born. I had told her I was in a lot of pain, but according to her "I didn't look like I was', "this was nothing" and "if I was making a fuss out of this already, I would certainly not be able to get through it because I had at least eight hours to go". I thought if that was nothing, I would certainly die. I still hate that woman. Years later, I became a maternity nurse. Of all the births I have ever witnessed, only one mother didn't look like she was in pain. The midwife, her husband and I all believed her when she told us what she felt. Being there for her in that moment helped me heal my own trauma, which I didn't even realise I still had. Many more years later, I'm now close to getting diagnosed with autism and suddenly that all makes sense. I still hate my midwife though, nothing will ever change that.
I am so glad you got to help the other woman and work through that trauma for you at the same time. Pain is a subjective thing, we all experience it differently, and if you are autistic, even more so. Your story is a really powerful example of the Triple Empathy Problem, where medical staff struggle to understand non-medical people because of the language differences, and non-autistic medical staff fail to understand autistic people because our sensory experiences are so different.
I didn’t need any pain medication after surgery for cancer. During all the tests, biopsies, various needles etc everything was fine. I think because everything made sense and was for a purpose. I can to an extent, reason the pain to make it manageable or make it go away. And I’m happy to watch procedures be done on me, which freaks drs out….which makes it more fun….. but is a good distraction from the pain too. What I haven’t been able to cope with is the unremitting pain from chronic migraines (which last weeks or months sometimes). The level of pain may not always be super severe, but I can’t cope with it at all, it absorbs all my attention and energy. Drs have always commented my pain response is abnormal. (That I’m in general abnormal). Makes sense now. Thank you.
Thank you for sharing that, Dee. I love how your reflection shows that when it makes sense, it hurts less. That is why it is SO important to have procedures explained.
I was late diagnosed with ASD last year and have personally always had a super high pain threshold - for example, I absolutely LOVE tattoos, and during my rib tattoo I fell asleep. I have also always loved to watch the needle when I get vaccines or blood drawn which Drs always found so weird, it's just something I find fascinating. It is super dangerous to have a high pain tolerance though, as a kid when I fell and hit my head off of a rock, or when I touched the hot muffler on my parents' car I never cried, so unless the thing causing pain is physically obvious I can see how it would be easy to miss.
That bit about blood tests/clinical contexts rings so true for me. The worst pain I’ve ever been in was at the dentist getting a filling. I screamed so loudly that I had to reassure the others in the waiting room outside that I was actually still alive.
@@adifferentjoylivingbetterw4972 Whenever I need to have any dental work done, I need double the pain meds. My dentist at first didn't believe it until I almost headbutted him while he was drilling and I could still feel pain. I had told him I needed extra and he didn't realise I could still feel things. He then tested by touching various parts asking me to put my hand up if I felt anything. A couple of spots were minimal or I felt nothing so didn't react, then he hit the jackpot and my arm shot up so fast! It's now on my file that I need a double dose and to give me an extra X number of minutes for it to kick in before beginning any drilling or extractions.
I'm in the process of being evaluated for ASD and I have an incredible pain threshold. Since the age of 9 or 10 I started ripping off all my toe nails except the big one. I rip them off completely including the bit that sits underneath the skin at the nail base. I just really don't like the sensation of my toe nails touching things like the inside of my shoes or rubbing against my blanket. When my wisdom teeth finally started to rot I broke off and pulled most of the tooth of each of them out myself. Took a few years to get the roots pulled because I was very poor at that time and had no dental coverage. When I get ear infections I hardly notice it till my eardrum perforates and I start bleeding out my ear- at that point I do feel it but I'm able to stay very calm through it. Labor with my two children was easy- I feel like I've had bowel movements that hurt worse. The worst pain I've ever felt was a ruptured brain aneurysm. It was an instantaneous drop me to my knees screaming bloody murder headache that was a 15 on a scale of 10 and I just went home and sat in a bath till the pain subsided and then saw a dr a few days later- took them a long time to properly diagnose because they just couldn't believe I didn't immediately get myself to an ER. That one could've easily killed me. Very VERY lucky it didn’t. Now I'm wondering about my late father because he also had incredible pain tolerance. When he was 5 he broke his toe clean through and then actually started taking the bone out and putting it back in like it was a curiosity to him. This went on for a few days- but doing this obviously caused it to become gangerous and he finally passed out while walking to school. Some other children found him and carried him home. They were going to amputate his foot but his father had recently learned about the discovery of penicillin and begged the Dr to wait and allow him to try to procure some. He did, it worked and it saved his foot. Is it possible that this physical pain threshold carries over into an emotional pain threshold? Might someone with asd potentially remain far too long in a toxic relationship? Because my father and I both seemed to have a knack for that as well...
Wow, thank you for sharing that. It’s interesting that the sensory need to avoid your toenails touching anything is stronger than any pain response in your feet. That definitely sounds like an interoception thing. From your description it sounds like your body isn’t getting the pain signals. If that is true for you, it is also likely that you may not feel emotional pain in a physical way either. You don’t have to feel a physical or emotional pain to decide to leave a toxic situation. Please take care of yourself.
I have high pain sensitivity and high pain tolerance. However, describing a pain threshold as the point at which pain becomes unbearable is... optimistic. If we're conscious, we bear it. We might wish it were unbearable, but...
Also, regarding depression and pain-this is apparently one of the cases in which you can run the pump backwards, so to speak. Depression is linked to an aversion to pain-if I can experience pain without aversion, depression is reduced. I assume this is the logic behind various kinds of self-harm, although my own experience is only on the rather mild end of that continuum. When I was young, cold was my preference. I know where the threshold for real harm is. I'm careful not to pass it, but getting close enough to see it can be wonderful.
My experience with clinical settings is the opposite. I'm reluctant to express pain to other people, to start with-and greater social anxiety amplifies that. Also, the adrenaline-or cortisol, or whichever it is-often chases the pain away. There's no room to pay attention to pain, my mind is taken up by anxiety and trying to manage the situation... (I'm auDHD, for what it's worth.)
@@aspidoscelis thank you for sharing all this, it is very relevant to me. Pain, anxiety, depression, and simply so overwhelmed i couldn’t explain it. Also auDHD, diagnosed at 32. Figuring things out. 🥲❤
My family are all autistic but low support needs. My son had severe double ear infections but had no idea. I've cut off the tips of two fingers, it honestly didn't hurt but I was sad about the damage it did to my hand. Toothaches are a thing, but I've had fillings with no numbing without any pain. My take away is we need to be more careful with ourselves and children because the signs that something is wrong might not be there.
My pain tolerance is nigh on nonexistent for most things, but extremely spicy food is fine. My heat pain threshold is about 115°F, and blunt force has an escalating impulse. I used to cry when in pain up to age 9 until the sadistic human males in my worthless family used their instrumental rage to shut that impulse down. I used to get spanked for crying when I was younger, even threatened. All other pain expressions were met with rage and gaslighting. Nowadays, I have engineered an entire personality construct to avoid acute pain, because feeling it makes me paranoid and irritable for several hours and ruins my self-esteem. My entire family can beg the Devil for mercy for all I care (except for my biological mother... she's like the cool aunt I wish was my actual mother) because even the thought of forgiving them makes me nauseous.
I am so sorry to hear that was your experience, Alastor. It should not have happened to you and it wasn't your fault. I suspect you aren't alone in being told that 'big boys don't cry' or 'stop crying or I'll give you something to cry about'. Neither is ok. I would struggle to forgive them if it happened to me too. What I do know is that forgiveness is something you do for yourself to help you let go of the pain, and in no way excuses what the other party did.
God bless your poor child self that is so horrible. You dont have to forgive anyone yet untill you're ready. And that may be never. You don't have to guve them anything. You don't owe them anything. The only person who is owed is you and more than likely they are so damaged and broken themslves they can't guve you the apology you deserve. But never fear pain. It's horrible but if you have support and a safe place you will find that pain only comes in short waves of around 90 seconds. And by processing and feeling pain in a safe space for short periods it actually makes that pain release and float away from you. You do not have to carry the pain they gave you for the rest of your life. It can be painful to let it go through you and put the other side but I promise you that in a safe environment with support of somone who is trained or just loves you and is capable you can let that pain pass through you and out the other side of you. It's wuite amazing when it happens and it happens in layers and each time you can be safe enough to feel a carried pain it just floats away from you and you never ever have to see it again or be afraid of it following you in that paranoid way. You deserve to be healed and you deserve to be free of pain rather than just avoiding of and afraid if pain. It's not your pain it is theirs they passed it on to you because they weren't strong enough to process that pain themsoves. But we can process it because we are stronger and have bigger kinder hearts. And I just hope you find supoort to do that work and to let that pain go which never belonged to you but which you now carry. Some day you will not carry it. And to me that is more what forgiveness is about. Not about them. But about you. I see forgiveness more as saying. This was never mine to begin with im letting it go into nothingness because that pain is the only thing that ties you to them. And unfortunately to untie the knots you have to touch the knits work them open and then bam. They just dissolve. And I really wish this for you to experience some day. No child deserves to be treated so badly. Pain ...your own pain not that inflicted on you by somone else..can be a good friend to you when the fear is gone. It will keep you safe. God bless you❤❤❤❤
This truly resonates, I have been hit as a pedestrian and seem to want to think urge lain away because the medical community can’t see past my ken denial and lack of accessing my pain. So I look like I’m lying. Wow, this was incredibly helpful. Thank you
I’m dealing with cyst on ovaries and I feel like the whole hospital thought I was over exaggerating and I couldn’t even SPEAK! And they kept asking me to talk with them it was awful and now I’m back home laying in bed feeling like I should jump out a window
Oh no! I'm so sorry that they didn't take your pain seriously. Lots of us lose the ability to speak under stress. It may help to do a hospital passport or take someone with you who knows how you communicate (if you can).
I am autistic and have a generally high tolerance to pain. However, I actually feel no pain when I have ear infections. It’s not about being unable to explain it, I really don’t feel any pain. The only time I do have pain in my ear is when my ear drum is about to rupture. Then it is sheer agony.
Oh yes, I remember that pain from my childhood. I had several times that my eardrums perforated, and I certainly felt that. It was dreadful. I think pain thresholds vary hugely from one person to the next. Some people just don't feel pain, others have a higher tolerance for the pain they feel.
I was diagnosed with adhd a few months ago at age 50. That diagnoses led me down this rabbit hole of research on neurodivergent traits and behaviors (it's my new hyper focus). I am 100% certain that I am also autistic for many reasons. One of my traits that stands out the most is my pain tolerance. When I had my fourth child I was doing a word puzzle up until it was time to push. When I called the nurse in to tell her I was ready she did not believe me. I put the book down so she could check me and my daughters head was crowning. I just recently fell while rollerskating and shattered my wrist. My husband came to take me to the hospital and he swore I was not that badly injured due to the fact that I was laughing and cracking jokes about choosing the wrong position to fall in. (I felt like I fell in slow motion and I literally had time to choose my position). I told my husband I was positive it was broken, I felt the bone go somewhere it was not supposed to be and I couldn't shake it back into place. Well my x-ray proved that it was so bad I had to have a metal plate put in to hold it together. I have so many other similar situations but I'll leave it at those two.
I can never tell when I’m sick, or how badly I am sick. Cause I’ll be like “am I really in lots of pain or am I experiencing little pain? What if I’m just thinking I’m sick but I’m not?” Often times I will get stabbed by things or just get cut by things and I won’t feel it or even know until I see blood or the cut on my skin. I remember one time I was driving home from work and didn’t know I had accidentally cut my finger until I noticed it had felt wet. Often times I have random bruises and will have no idea how they got there or when (I’m clumsy and will ram into stuff when I’m in a hurry)
I'm curious what you mean when you say 'highly reactive' - I'm wondering if that means that you are aware that something feels off - but not able to identify is as pain? Of if it's something else? If it is, you might be able to recognise that feeling as the first stage of exploring what is wrong on a bodily level.
My little brother has a low pain tolerance and he has aspergers and me I have high tolerance and don't feel anything at all. My parents have to check me all the time to make sure that I don't have something wrong
I broke a tooth a couple of weeks ago, after my crown came out, and I DID feel immediate pain, but just dealt with it, and felt that it generally went away. Obviously i had no idea that it was BROKEN until I went back to the dentist last week, to figure out what to do with my crown, and was told that I had a broken tooth, and it would need to be extracted. I went THIS week for the extraction, only used local anesthesia, and got complimented on how good of a patient I was, a few times, during the 30 minutes it took to get numb and have the tooth taken out. Sometimes pain is overbearing and sometimes i just can't tell if things actually hurt. It's so confusing, and sometimes very dangerous, like the kids with sepsis. It's hard. Thank you for this video!
I'm not diagnosed but I'm pretty sure that I am. Anyway, I find I have a high threshold for pain but I seem to be in tune with my body in weird ways. Generally. I had a doctor who didn't listen to me when I started having focal seizures and had severe reactions to the medications. After one really, really bad reaction that caused a rash all over my body, 50 pounds of water retention in one week and what seemed like nerve damage, she completely disregarded me and did not listen to my concerns. Fast forward and now I have several systems that are damaged. I keep getting told by doctors that I shouldn't be able to 'feel' when something is bothering me like when my kidneys are upset or if my bundle branch is happening, but I do. But you can stab me with needles all day long and I wouldn't really be bothered by it.
That sounds like a difference in your interoception (how you experience and decode internal bodily messages). Can I suggest you look up the fabulous OT Kelly Mahler who has a load of great resources www.kelly-mahler.com/resources/live-online-courses/?mc_cid=3d2437d562&mc_eid=2aa8664bfc
[6:30] It's not that we don't realize we are in pain it's that we have learned from a lifetime of experience that our pain is unimportant or made up for attention su just sit down, be quiet and behave yourself. "The beatings will continue until morale improves." - Lt. B.E. Lodge, U.S. Navy, 1961
I have both autism and hEDS. I also have a high pain tolerance although some pain seems to be worse than others. Maybe it depends on other stuff going on at the time?? Anyway one time in 1999 I had gotten bit by my cat on my right hand. Within the hour my hand was swollen + red. Infected. Went to the ER. I had no pain. I was more scared of what the doctors might do - I mean were they going to scrub on the bite?? But I had NO pain. Also got a big needle in the hip and didnt feel that either. Some years later I got bit by a spider on my left finger. Now that had hurt!! But unknown to me at the same time I had undiagnosed celiac going on. I have also stepped into a hole in the park to twist my ankle and then walked it off - walked several miles in fact. It had felt uncomfortable. As a kid I could not stand toothaches or headaches. Luckily those were rare. Going carnivore really helps the teeth! Have celiac + corn allergy.
I’m really interested in the thought that pain is context sensitive. I know the pain of birth felt clean, but a tooth abscess was a dark and dirty pain for me.
Relatable. I'm autistic, but not non-verbal, but somehow I don't experience the proper urgency to act when I'm in pain or ill, I sort of put up with it. If my wife hadn't put her foot down to go see my doctor, I would have been dead, because it turned out I had blood poisoning.
@@adifferentjoylivingbetterw4972 Thanks! It can also keep me from seeking help if the particular person is difficult for me to talk to. My anxiety at having the social interaction overrules my need for treatment. For example, because I have diabetes, I should get my feet checked regularly, but the foot-therapist does a lot of small talk and tell me about her trouble with her daughter, etc, so I will put off seeing her. I just made an appointment, after my doctor pushed for me to do so, so I'm proud of that. (I can't just change therapist, as there is several years waiting list and no certainty that it'll be better somewhere else). Realizing how autism makes it harder to take care of oneself can help me get it done, because then it feels unfair, and I hate unfairness more than smalltalk.
The more I hang out with autistic people who use different types of language (physical, sensory, echolalia for example) the more I worry about whether we are hearing and understanding the language they are using. So often, pain is expressed through behaviour. If we are really listening to all of those subtle ways of communicating without words, the better we are able to advocate for them if they need medical help in the future.
I have a very high tolerance for pain and an extremely low tolerance for minor irritation. I often can't tell when I'm hurt, or I won't notice for a long time until I see a visual confirmation. If the pain if very high - for example, tooth pain - I go into a weird buzzing state where I just exist in the pain until it passes. Helpful when my system burns off the maximum amount of anesthetic halfway through a cavity drill or something. However, an itch? A sneeze? The edge of a scab catching on the inside of my sleeve when I move? It's like Fire. Or Gnats everywhere. It's almost all consuming. I Abhor a light touch. I will itch for hours, have nerves fire off in my nose like feathers are constantly being dragged through. It's so utterly distracting, sometimes I've lost full days to it. The syringe example here was interesting - 06:47 - I never have an issue with needles, never hurts, can watch the whole thing. But afterwards? I do feel that prick as that small irritation as it heals more then the initial pain of the prick, so it is like a weird backwards bridge.
I dont think you have it right. Being in a stressful situation makes one's behavior more difficult, but it doesn't change the intensity of pain one feels. I am autistic. I can feel extreme pain for something others consider insignificant, and absolutely no pain at times when it was clear to doctors I should be suffering greatly. It depends on the individual.
I agree everyone is different. It may not change the intensity for you. What I noticed in myself was that the experience of the pain was different which is what I mean by intensity.
I am so sorry to hear that - I expect that makes it harder to get the help you need. (I recognise that, but can't hit like in response as I don't like the thought of you being in pain - even if we don't know each other!
@@adifferentjoylivingbetterw4972 it's only twice a month, but wished the ibproven worked faster when I need it. There's much ppl worse off than me. But explaining how I am when I get to high pain.
my question is, as an ASD with high anxiety and a predilection to panic attacks, why is my pain tolerance so high. also, how much higher would my pain tolerance be without the anxiety and panic attacks?
Hello Fred. Everyone is different, and we don't know each other well, but my suggestion would be that it is an interoception issue. You may not be getting and /or receiving the message from your pain receptors. If your body is feeling the pain, and trying to keep you safe, but it is being misidentified / or not received /decoded by your brain, it will find another way to let you know something's off. This may be feeding into your anxiety and panic attacks. It might be worth checking to see if there is something that could be hurt.... even if you aren't feeling it!
@@adifferentjoylivingbetterw4972 i actually feel the pain. i t just doesn’t bother me until it reaches levels that are generally viewed as incredibly astounding. for example, i had a TLIF at L5-S1 and the morning after surgery i got myself up at 6 am fully dressed except for my socks and shoes because i literally couldn’t physically bend over to put them on. the surgery was on a wednesday and the following monday i was back at work ready to go. i absolutely feel it but just don’t capitulate to it. that’s what i don’t understand. i am hyper sensitive in almost every physical respect, light, sound, touch, smell and taste. i’d probably be an interesting subject to study.
You sound a lot like me! I wonder why too when I am so sensitive to touch, scents, and lights. I'm not sure why either, I thought antidepressants may be the numbing factor but I have had a high pain tolerance forever.
What even is pain? Where does it start? At what point does discomfort become pain? I'm autistic, I know that pain cannot be directly measured, pain scales are very ambiguous, and apparently pretty much the only patients/subjects who even consider this ambiguity are autistics. I'm very skeptical about any research on pain
Thank you. I am a late diagnosed autistic woman and I have found that to be the case for me. I experience pain worse and it baffles my doctors. I'm so sensitive to pain. And my chiropractor is always amazed how "in tune" I am with my body as far as being aware when something is out. Thank you for this video.
Thank you, Jenny! We are all different, I hope that when you experience pain, it is not minimised, or ignored in the way that some people's pain is.
Me Also, 70 y.o. diagnosed with autism not long ago. Always knew since a child I was different. When I have pain it’s like torture to me, very difficult to function at all. My adopted mother very rarely felt pain in her 90 year life, or if she did she never said a word. Is that a Norwegian thing? A few weeks ago I asked my dentist after he cut a V in my gum to do a filling under a crown if I could have 2 Vicodin incase I was not able to sleep. If I don’t get sleep I’m really a mess.This was after he told me I would have some pain for a few days. I told him I don’t do well with pain. He told me to take Ibuprofen or Tylenol, I have kidney issues my Dr. said never take ibuprofen ( this has been my go to for pain for many, many years of having a very physical job 40 years BTW. Tylenol never worked. As he walked out I said “ Ok fuck my kidneys then “ it’s been over a week now and still having pain. I have no trust in the medical field and now also the dental field. They have no clue at 30 years old how it feels when you’re 70. I worked for a large HMO for those 40 years that broke my back. I was a contortionist in their medical records department working with heavy paper charts from floor to ceiling, many long rows of files approx 80 thousand charts back in the 1980’s. Now 4 years of depression uncontrollable still trying to find an antidepressant that works, had been under control for many years until my also autistic neighbor started harassing me. He had a major heart attack a year ago or so and is dead now. My stress level is over the top right now. Benefits are great after retirement but pretty useless in my opinion, unless you’ve been in a car accident or have a heart attack that you actually want to live through, they just want to do all the preventative procedures that you may or may not be the same when their done, nope don’t trust that either. I’ll take my chances without your preventative bullshit. Life’s too hard after years of bullying, but at least I know why now.
Do you have ADHD heds to diagnosed CFS fybromyalgia chronic migraine check out Dr lenz do you have OCD our brain is different late diagnosed 44. Do you have fybromyalgia pain and howmmuch is autism burnout
I'm autistic. I go non verbal when I'm in pain and completely focused. I can't hear you, i can't respond. I just focus on riding through that wave of pain. For me it makes absolutely no difference where i am or how happy or sad i am when experiencing pain. I have lots of kids and it wasn't a happy pain it was just pain. I have a very high threshold. As in being about to have a baby and midwives don't realise until baby is suddenly born. Or walking around on a semi dislocated ankle or carrying a 2 year old with a chipped elbow bone, bursitis and ripped tendons. Yet i had a sore lip last week and it really bothered me.
It can be impossible to process more than one thing at a time. Thank you for sharing that @Mandaxx25!
This is really interesting. I'm autistic and I have a really high pain tolerance. I also can communicate when I'm hurt pretty well, but when I was a kid there were times I got hurt and didn't realize for a while or at all. I actually broke a finger and it healed without me realizing when I was 10 years old. I knew it hurt of course, but never realized anything more was wrong and never said anything. I did relate to the thing about pain lingering though, I definitely experience that when I get a shot or blood drawn.
Now that I'm older I can recognize when I'm hurt pretty well and in general I have pretty good awareness of my body. Part of the reason for that is that I want to be a doctor, so I've learned about a lot of injuries and anatomy, which makes it easier to see in yourself as well.
I'm so impressed you are looking to be a doctor. What a brilliant way to use your passionate interest! Please do, we need you to help translate into autistic speak!
Before I got diagnosed with autism and ADHD, I've had problems with being addicted to opioid painmeds. They allowed me to suddenly do what I wanted to do. I was only when I started using them that I realised I experiences fysical pain at all times every day, which claimed such a big part of my brain that it crippled my cognitive abilities. But being neurodivergent, I could not seperate pain from anxiety, being sleepy, hungry or having to go to the bathroom. All I knew was that whenever I stopped taking the painmeds, The feeling of fysical discomfort would become so intense I would burnout.
Thank you so much for sharing that, Loek. That must have been so hard. What is it like for you now? Have you been able to use that knowledge to help reduce the pain?
@@adifferentjoylivingbetterw4972 As hard as the depression/burnouts in my life have been, they have also always been the "reset-button" to be able to break out of bad patterns. Once you're at the bottom, you can only go up. Being connected to my body is something I practice now. I set alarmclocks to take moments to sit and simply feel my fysical senses. It is only then that I realise what specific discomfort I have, and I can act on it. Short mindfull exercises help in those moments. My pains increase in a psycho-somatic way, so relaxing my muscles already helps.
@@loekverheijden2499 so interesting I have fybromyalgia now diagnosed Asperger's hypomobility I've had CFS pots before looks like all same thing pain been he'll so have you got your pain in remission do you think your pain is burnouts.neurosthensia
Man, this story could have been written by myself. I relate a lot! Hope you're doing better now. Personally for me, I'm doing much better now. What created the change for me is that at a certain moment I was just SOOO done with letting my digestive issues control my entire life. I realized that eventhough I kinda was a victim, feeling like a victim is NOT going to make things better. Ownership is the answer (atleast it was for me).
this is very interesting to me and I hope they study the link between pain and ND. I also was a opioid addict for years before I was properly diagnosed with ADHD (under investigation for autism). I didn't like to feel high but it actually made me feel normal, like the pain of existing in such an overstimulating harsh world was bearable. I have been sober since 2017 and ever since I got treatment for ADHD I NEVER think about using opioids. but the pain is still there and controls my life. plus now that I'm older I have physical health issues plus chronic ones like endometriosis, pudenal neuralgica, abdominal adhesions.... I get zero medications to help with my pain bc of my past and bc of my diagnosis and nobody believes me that I'm in pain.
My daughter and I are both ASD and ADHD and we can go nonverbal when we get over stressed, I just cannot form words and stammer terribly. We have come up with a set of about 10 hand gestures such as thumbs up for yes or ok and thumbs down for no. These situations tend to happen when we are out and about and are often accompanied by shaking, sweating, unsteadiness so one of the first questions we always ask is "Do you want to go home?/get out of here?" If she doesn't ask me this, I touch her arm to get her attention, tap myself on the chest them make a swimming fish movement with one hand away from me to show I need to get out NOW!
A thumb to the lips with the rest of the fingers curled over and the little one extended, then tipping the hand up means drink, two fingers to the lips, food. Shading the eyes - lights are too bright, I need somewhere darker and so on.
My daughter is also a type 1 diabetic so that is why we have the questions about food and drinking, because if she is starting to have a hypo/hyper, the shaking etc can seem similar and I ALWAYS check her blood glucose when she goes nonverbal incase it gets too low or high and I need an ambulance.
What fantastic use of hand signals. Anything that helps you both to manage difficult sensory or social environments and her diabetes is fantastic. Well done, you!
I have a high pain threshold and a high pain tolerance. Causes me some issues because of the fact that I don't really know something is seriously wrong. Examples: Appendix that was about to burst (that I didn't know until surgery), broken tailbone (didn't know until the next day), uti that turned into a kidney infection that was one step away from sepsis (doctor was surprised that I wasn't in more pain)
You are not alone, Owen. I'm glad you have been Ok in spite of that, but do mention your pain profile any time you go to the Doctors
This explains most of my life! I could never figure out the many “faces of pain” scale.
I start acting up before I recognize the pain 😢 then don’t get my pain managed because I cannot tell them what level compared to breaking my back or birthing a child lol
The faces don’t make sense to me
I have high pain tolerance but a low pain threshold. I feel pain very easily but it doesn't bother me unless it's a toothed ache. They hurt like hell. I could give birth every day of the week or break a leg but a rotting tooth. In fairness I did leave it till it was excruciating beofre going to the dentist lol.. which probably shouldn't.. my friend has autism and she is always in agony and has no core strength she's got that floppy body thing and her brain doesn't seem to be connected properly to her body to control her movements she constantly arches backwards and I'm trying to find out info to help herm she was diagnosed autistic as a child.
@Therealhtrinity yeah its not helpful I don't think. It would make more sense to have an injury picture to me. Pain is so subjective. It doesnt tell you how bad an injury is. They really need to look at or for injuries rather than asking the person..my mom gets this electric shock pain thing..I've had it a handful of times. It's shooting horrible pain but nothing is phsyical wrong except nerves are firing wildly. And then she broke her hip and was trying to walk upstairs on it. So like asking her her oevel of pain would not have helped. Broken bones also don't feel half as bad as a paper cut.
I've broken bones, gotten cuts, had shingles twice and much more, without even blinking. There are so many times I've noticed bruices all over my body and I have no idea where it came from since I don't remember banging my body parts into anything and it never hurts. The only reason I sought help for my broken bones was because I either couldn't move that part or it was super swollen. Doctors thought I had damaged some nerve or something.
The worst pain I've ever felt was dairy allergy reaction. The abdominal pain was 100 on a scale from 1 to 10. It was so bad I passed out from it.
I now have ME(/CFS) which causes nerve, muscle and joint pain. My pain tolerance has been lowered a lot, but it's also to the point that i'm so used to it that should I hurt myself I wouldn't even notice (case in point: shingles #1. The second I noticed because I knew what to look for - the itchiness).
I cannot agree more! For example, I feel hungry only when I am reaally hungry, like after 7/8h + since the last meal. But, I know I am hungry if I feel nervous, anxious, cannot focus on anything, angry, and I check the time and I know last time I ate was 4/5 hs ago. Since I am more aware of this, my life became more bearable. Eat sometimes guys!
Hangry is a real thing lots of us have!
My midwife was absolutely certain I wasn't in labour up until 15 minutes (!) before my son was born. I had told her I was in a lot of pain, but according to her "I didn't look like I was', "this was nothing" and "if I was making a fuss out of this already, I would certainly not be able to get through it because I had at least eight hours to go".
I thought if that was nothing, I would certainly die.
I still hate that woman.
Years later, I became a maternity nurse. Of all the births I have ever witnessed, only one mother didn't look like she was in pain. The midwife, her husband and I all believed her when she told us what she felt. Being there for her in that moment helped me heal my own trauma, which I didn't even realise I still had.
Many more years later, I'm now close to getting diagnosed with autism and suddenly that all makes sense.
I still hate my midwife though, nothing will ever change that.
I am so glad you got to help the other woman and work through that trauma for you at the same time. Pain is a subjective thing, we all experience it differently, and if you are autistic, even more so. Your story is a really powerful example of the Triple Empathy Problem, where medical staff struggle to understand non-medical people because of the language differences, and non-autistic medical staff fail to understand autistic people because our sensory experiences are so different.
I didn’t need any pain medication after surgery for cancer. During all the tests, biopsies, various needles etc everything was fine. I think because everything made sense and was for a purpose. I can to an extent, reason the pain to make it manageable or make it go away. And I’m happy to watch procedures be done on me, which freaks drs out….which makes it more fun….. but is a good distraction from the pain too.
What I haven’t been able to cope with is the unremitting pain from chronic migraines (which last weeks or months sometimes). The level of pain may not always be super severe, but I can’t cope with it at all, it absorbs all my attention and energy.
Drs have always commented my pain response is abnormal. (That I’m in general abnormal). Makes sense now. Thank you.
Thank you for sharing that, Dee. I love how your reflection shows that when it makes sense, it hurts less. That is why it is SO important to have procedures explained.
I was late diagnosed with ASD last year and have personally always had a super high pain threshold - for example, I absolutely LOVE tattoos, and during my rib tattoo I fell asleep. I have also always loved to watch the needle when I get vaccines or blood drawn which Drs always found so weird, it's just something I find fascinating. It is super dangerous to have a high pain tolerance though, as a kid when I fell and hit my head off of a rock, or when I touched the hot muffler on my parents' car I never cried, so unless the thing causing pain is physically obvious I can see how it would be easy to miss.
You need to be REALLY careful if you can't feel pain to make sure you are aware that you can easily be injured too. Thank you for highlighting that!
That bit about blood tests/clinical contexts rings so true for me. The worst pain I’ve ever been in was at the dentist getting a filling. I screamed so loudly that I had to reassure the others in the waiting room outside that I was actually still alive.
I'm so sorry to hear that! It certainly makes sense to many of the people I know
@@adifferentjoylivingbetterw4972 Whenever I need to have any dental work done, I need double the pain meds. My dentist at first didn't believe it until I almost headbutted him while he was drilling and I could still feel pain. I had told him I needed extra and he didn't realise I could still feel things. He then tested by touching various parts asking me to put my hand up if I felt anything. A couple of spots were minimal or I felt nothing so didn't react, then he hit the jackpot and my arm shot up so fast! It's now on my file that I need a double dose and to give me an extra X number of minutes for it to kick in before beginning any drilling or extractions.
I'm in the process of being evaluated for ASD and I have an incredible pain threshold. Since the age of 9 or 10 I started ripping off all my toe nails except the big one. I rip them off completely including the bit that sits underneath the skin at the nail base. I just really don't like the sensation of my toe nails touching things like the inside of my shoes or rubbing against my blanket.
When my wisdom teeth finally started to rot I broke off and pulled most of the tooth of each of them out myself. Took a few years to get the roots pulled because I was very poor at that time and had no dental coverage.
When I get ear infections I hardly notice it till my eardrum perforates and I start bleeding out my ear- at that point I do feel it but I'm able to stay very calm through it.
Labor with my two children was easy- I feel like I've had bowel movements that hurt worse.
The worst pain I've ever felt was a ruptured brain aneurysm. It was an instantaneous drop me to my knees screaming bloody murder headache that was a 15 on a scale of 10 and I just went home and sat in a bath till the pain subsided and then saw a dr a few days later- took them a long time to properly diagnose because they just couldn't believe I didn't immediately get myself to an ER. That one could've easily killed me. Very VERY lucky it didn’t.
Now I'm wondering about my late father because he also had incredible pain tolerance. When he was 5 he broke his toe clean through and then actually started taking the bone out and putting it back in like it was a curiosity to him. This went on for a few days- but doing this obviously caused it to become gangerous and he finally passed out while walking to school. Some other children found him and carried him home. They were going to amputate his foot but his father had recently learned about the discovery of penicillin and begged the Dr to wait and allow him to try to procure some. He did, it worked and it saved his foot.
Is it possible that this physical pain threshold carries over into an emotional pain threshold? Might someone with asd potentially remain far too long in a toxic relationship? Because my father and I both seemed to have a knack for that as well...
Wow, thank you for sharing that. It’s interesting that the sensory need to avoid your toenails touching anything is stronger than any pain response in your feet. That definitely sounds like an interoception thing. From your description it sounds like your body isn’t getting the pain signals. If that is true for you, it is also likely that you may not feel emotional pain in a physical way either.
You don’t have to feel a physical or emotional pain to decide to leave a toxic situation. Please take care of yourself.
I have high pain sensitivity and high pain tolerance.
However, describing a pain threshold as the point at which pain becomes unbearable is... optimistic. If we're conscious, we bear it. We might wish it were unbearable, but...
Also, regarding depression and pain-this is apparently one of the cases in which you can run the pump backwards, so to speak. Depression is linked to an aversion to pain-if I can experience pain without aversion, depression is reduced. I assume this is the logic behind various kinds of self-harm, although my own experience is only on the rather mild end of that continuum.
When I was young, cold was my preference. I know where the threshold for real harm is. I'm careful not to pass it, but getting close enough to see it can be wonderful.
My experience with clinical settings is the opposite. I'm reluctant to express pain to other people, to start with-and greater social anxiety amplifies that. Also, the adrenaline-or cortisol, or whichever it is-often chases the pain away. There's no room to pay attention to pain, my mind is taken up by anxiety and trying to manage the situation...
(I'm auDHD, for what it's worth.)
@@aspidoscelis thank you for sharing all this, it is very relevant to me. Pain, anxiety, depression, and simply so overwhelmed i couldn’t explain it. Also auDHD, diagnosed at 32. Figuring things out. 🥲❤
It is hard to want to be honest in a place where you don't feel psychologically safe.@@aspidoscelis
My family are all autistic but low support needs. My son had severe double ear infections but had no idea. I've cut off the tips of two fingers, it honestly didn't hurt but I was sad about the damage it did to my hand. Toothaches are a thing, but I've had fillings with no numbing without any pain.
My take away is we need to be more careful with ourselves and children because the signs that something is wrong might not be there.
Absolutely, Emmett! Once you know that, you can be more aware of the risks of injury that you haven't noticed. Please take care of yourselves.
My pain tolerance is nigh on nonexistent for most things, but extremely spicy food is fine. My heat pain threshold is about 115°F, and blunt force has an escalating impulse. I used to cry when in pain up to age 9 until the sadistic human males in my worthless family used their instrumental rage to shut that impulse down. I used to get spanked for crying when I was younger, even threatened. All other pain expressions were met with rage and gaslighting. Nowadays, I have engineered an entire personality construct to avoid acute pain, because feeling it makes me paranoid and irritable for several hours and ruins my self-esteem.
My entire family can beg the Devil for mercy for all I care (except for my biological mother... she's like the cool aunt I wish was my actual mother) because even the thought of forgiving them makes me nauseous.
I am so sorry to hear that was your experience, Alastor. It should not have happened to you and it wasn't your fault. I suspect you aren't alone in being told that 'big boys don't cry' or 'stop crying or I'll give you something to cry about'. Neither is ok. I would struggle to forgive them if it happened to me too. What I do know is that forgiveness is something you do for yourself to help you let go of the pain, and in no way excuses what the other party did.
God bless your poor child self that is so horrible. You dont have to forgive anyone yet untill you're ready. And that may be never. You don't have to guve them anything. You don't owe them anything. The only person who is owed is you and more than likely they are so damaged and broken themslves they can't guve you the apology you deserve. But never fear pain. It's horrible but if you have support and a safe place you will find that pain only comes in short waves of around 90 seconds. And by processing and feeling pain in a safe space for short periods it actually makes that pain release and float away from you. You do not have to carry the pain they gave you for the rest of your life. It can be painful to let it go through you and put the other side but I promise you that in a safe environment with support of somone who is trained or just loves you and is capable you can let that pain pass through you and out the other side of you. It's wuite amazing when it happens and it happens in layers and each time you can be safe enough to feel a carried pain it just floats away from you and you never ever have to see it again or be afraid of it following you in that paranoid way. You deserve to be healed and you deserve to be free of pain rather than just avoiding of and afraid if pain. It's not your pain it is theirs they passed it on to you because they weren't strong enough to process that pain themsoves. But we can process it because we are stronger and have bigger kinder hearts. And I just hope you find supoort to do that work and to let that pain go which never belonged to you but which you now carry. Some day you will not carry it. And to me that is more what forgiveness is about. Not about them. But about you. I see forgiveness more as saying. This was never mine to begin with im letting it go into nothingness because that pain is the only thing that ties you to them. And unfortunately to untie the knots you have to touch the knits work them open and then bam. They just dissolve. And I really wish this for you to experience some day. No child deserves to be treated so badly. Pain ...your own pain not that inflicted on you by somone else..can be a good friend to you when the fear is gone. It will keep you safe. God bless you❤❤❤❤
@@Padraigp Sometimes these things just need to be said. Thank you. It is extremely relevant to my struggle.
This truly resonates, I have been hit as a pedestrian and seem to want to think urge lain away because the medical community can’t see past my ken denial and lack of accessing my pain. So I look like I’m lying.
Wow, this was incredibly helpful. Thank you
You are welcome! 🙂
I’m dealing with cyst on ovaries and I feel like the whole hospital thought I was over exaggerating and I couldn’t even SPEAK! And they kept asking me to talk with them it was awful and now I’m back home laying in bed feeling like I should jump out a window
Oh no! I'm so sorry that they didn't take your pain seriously. Lots of us lose the ability to speak under stress. It may help to do a hospital passport or take someone with you who knows how you communicate (if you can).
I am autistic and have a generally high tolerance to pain. However, I actually feel no pain when I have ear infections. It’s not about being unable to explain it, I really don’t feel any pain. The only time I do have pain in my ear is when my ear drum is about to rupture. Then it is sheer agony.
Oh yes, I remember that pain from my childhood. I had several times that my eardrums perforated, and I certainly felt that. It was dreadful. I think pain thresholds vary hugely from one person to the next. Some people just don't feel pain, others have a higher tolerance for the pain they feel.
I was diagnosed with adhd a few months ago at age 50. That diagnoses led me down this rabbit hole of research on neurodivergent traits and behaviors (it's my new hyper focus). I am 100% certain that I am also autistic for many reasons. One of my traits that stands out the most is my pain tolerance. When I had my fourth child I was doing a word puzzle up until it was time to push. When I called the nurse in to tell her I was ready she did not believe me. I put the book down so she could check me and my daughters head was crowning.
I just recently fell while rollerskating and shattered my wrist. My husband came to take me to the hospital and he swore I was not that badly injured due to the fact that I was laughing and cracking jokes about choosing the wrong position to fall in. (I felt like I fell in slow motion and I literally had time to choose my position). I told my husband I was positive it was broken, I felt the bone go somewhere it was not supposed to be and I couldn't shake it back into place. Well my x-ray proved that it was so bad I had to have a metal plate put in to hold it together.
I have so many other similar situations but I'll leave it at those two.
@@LATONYAH74 Take care of yourself, if your pain threshold is really low, it can be very easy to do yourself real damage without knowing it….
Can't wait to watch this
Go for it, and let me know what you think... (Oh, and LIKE & SUBSCRIBE!)
I can never tell when I’m sick, or how badly I am sick. Cause I’ll be like “am I really in lots of pain or am I experiencing little pain? What if I’m just thinking I’m sick but I’m not?” Often times I will get stabbed by things or just get cut by things and I won’t feel it or even know until I see blood or the cut on my skin. I remember one time I was driving home from work and didn’t know I had accidentally cut my finger until I noticed it had felt wet. Often times I have random bruises and will have no idea how they got there or when (I’m clumsy and will ram into stuff when I’m in a hurry)
Oh I recognise that - especially the bruising!
I'm highly reactive but have a terribly high pain threshold which has caused conditions to be worse because of delayed treatment.
I'm curious what you mean when you say 'highly reactive' - I'm wondering if that means that you are aware that something feels off - but not able to identify is as pain? Of if it's something else? If it is, you might be able to recognise that feeling as the first stage of exploring what is wrong on a bodily level.
My little brother has a low pain tolerance and he has aspergers and me I have high tolerance and don't feel anything at all. My parents have to check me all the time to make sure that I don't have something wrong
You are right. It is so individual!
I broke a tooth a couple of weeks ago, after my crown came out, and I DID feel immediate pain, but just dealt with it, and felt that it generally went away. Obviously i had no idea that it was BROKEN until I went back to the dentist last week, to figure out what to do with my crown, and was told that I had a broken tooth, and it would need to be extracted. I went THIS week for the extraction, only used local anesthesia, and got complimented on how good of a patient I was, a few times, during the 30 minutes it took to get numb and have the tooth taken out. Sometimes pain is overbearing and sometimes i just can't tell if things actually hurt. It's so confusing, and sometimes very dangerous, like the kids with sepsis. It's hard. Thank you for this video!
Oh, I really feel you in that! I've had a LOT of dental treatment and it is very variable!
We experience it differently for sure
Sometimes, It's hard to know that it IS different when that is the only version we have ever known.
I'm not diagnosed but I'm pretty sure that I am. Anyway, I find I have a high threshold for pain but I seem to be in tune with my body in weird ways. Generally. I had a doctor who didn't listen to me when I started having focal seizures and had severe reactions to the medications. After one really, really bad reaction that caused a rash all over my body, 50 pounds of water retention in one week and what seemed like nerve damage, she completely disregarded me and did not listen to my concerns. Fast forward and now I have several systems that are damaged. I keep getting told by doctors that I shouldn't be able to 'feel' when something is bothering me like when my kidneys are upset or if my bundle branch is happening, but I do.
But you can stab me with needles all day long and I wouldn't really be bothered by it.
That sounds like a difference in your interoception (how you experience and decode internal bodily messages). Can I suggest you look up the fabulous OT Kelly Mahler who has a load of great resources www.kelly-mahler.com/resources/live-online-courses/?mc_cid=3d2437d562&mc_eid=2aa8664bfc
As a little girl I didn’t cry when I got hurt
I'm curious... do yo think that was because it didn't hurt, or it did hurt, but you didn't cry?
I labored with both my kids silently
That's fine too. I remember my NCT teacher saying that some women go into themselves completely in childbirth. It is such a full-body experience
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[6:30] It's not that we don't realize we are in pain it's that we have learned from a lifetime of experience that our pain is unimportant or made up for attention su just sit down, be quiet and behave yourself. "The beatings will continue until morale improves." - Lt. B.E. Lodge, U.S. Navy, 1961
@@theJellyjoker there is definitely something in that!
I have both autism and hEDS. I also have a high pain tolerance although some pain seems to be worse than others. Maybe it depends on other stuff going on at the time?? Anyway one time in 1999 I had gotten bit by my cat on my right hand. Within the hour my hand was swollen + red. Infected. Went to the ER. I had no pain. I was more scared of what the doctors might do - I mean were they going to scrub on the bite?? But I had NO pain. Also got a big needle in the hip and didnt feel that either. Some years later I got bit by a spider on my left finger. Now that had hurt!! But unknown to me at the same time I had undiagnosed celiac going on. I have also stepped into a hole in the park to twist my ankle and then walked it off - walked several miles in fact. It had felt uncomfortable. As a kid I could not stand toothaches or headaches. Luckily those were rare. Going carnivore really helps the teeth! Have celiac + corn allergy.
I’m really interested in the thought that pain is context sensitive. I know the pain of birth felt clean, but a tooth abscess was a dark and dirty pain for me.
Relatable. I'm autistic, but not non-verbal, but somehow I don't experience the proper urgency to act when I'm in pain or ill, I sort of put up with it. If my wife hadn't put her foot down to go see my doctor, I would have been dead, because it turned out I had blood poisoning.
Lordy! I’m glad she did! It is so important to be aware…
@@adifferentjoylivingbetterw4972 Thanks! It can also keep me from seeking help if the particular person is difficult for me to talk to. My anxiety at having the social interaction overrules my need for treatment. For example, because I have diabetes, I should get my feet checked regularly, but the foot-therapist does a lot of small talk and tell me about her trouble with her daughter, etc, so I will put off seeing her. I just made an appointment, after my doctor pushed for me to do so, so I'm proud of that. (I can't just change therapist, as there is several years waiting list and no certainty that it'll be better somewhere else). Realizing how autism makes it harder to take care of oneself can help me get it done, because then it feels unfair, and I hate unfairness more than smalltalk.
My daughter is non verbal autistic she has high pain threshold
The more I hang out with autistic people who use different types of language (physical, sensory, echolalia for example) the more I worry about whether we are hearing and understanding the language they are using. So often, pain is expressed through behaviour. If we are really listening to all of those subtle ways of communicating without words, the better we are able to advocate for them if they need medical help in the future.
Very well explained.
Thank you!
I have a very high tolerance for pain and an extremely low tolerance for minor irritation. I often can't tell when I'm hurt, or I won't notice for a long time until I see a visual confirmation. If the pain if very high - for example, tooth pain - I go into a weird buzzing state where I just exist in the pain until it passes. Helpful when my system burns off the maximum amount of anesthetic halfway through a cavity drill or something. However, an itch? A sneeze? The edge of a scab catching on the inside of my sleeve when I move? It's like Fire. Or Gnats everywhere. It's almost all consuming. I Abhor a light touch. I will itch for hours, have nerves fire off in my nose like feathers are constantly being dragged through. It's so utterly distracting, sometimes I've lost full days to it. The syringe example here was interesting - 06:47 - I never have an issue with needles, never hurts, can watch the whole thing. But afterwards? I do feel that prick as that small irritation as it heals more then the initial pain of the prick, so it is like a weird backwards bridge.
@@artofmkd what a brilliant explanation. Thank you so much for sharing that!
I dont think you have it right. Being in a stressful situation makes one's behavior more difficult, but it doesn't change the intensity of pain one feels. I am autistic. I can feel extreme pain for something others consider insignificant, and absolutely no pain at times when it was clear to doctors I should be suffering greatly. It depends on the individual.
I agree everyone is different. It may not change the intensity for you. What I noticed in myself was that the experience of the pain was different which is what I mean by intensity.
I just lay and want to die when i am in pain or i go mute. But i am in lots of pain at that point.
I am so sorry to hear that - I expect that makes it harder to get the help you need. (I recognise that, but can't hit like in response as I don't like the thought of you being in pain - even if we don't know each other!
@@adifferentjoylivingbetterw4972 it's only twice a month, but wished the ibproven worked faster when I need it. There's much ppl worse off than me. But explaining how I am when I get to high pain.
I have bad teeth I have ASDL1
I can think of lots of reasons why that may be the case. Why is it for you?
my question is, as an ASD with high anxiety and a predilection to panic attacks, why is my pain tolerance so high. also, how much higher would my pain tolerance be without the anxiety and panic attacks?
Hello Fred. Everyone is different, and we don't know each other well, but my suggestion would be that it is an interoception issue. You may not be getting and /or receiving the message from your pain receptors. If your body is feeling the pain, and trying to keep you safe, but it is being misidentified / or not received /decoded by your brain, it will find another way to let you know something's off. This may be feeding into your anxiety and panic attacks.
It might be worth checking to see if there is something that could be hurt.... even if you aren't feeling it!
@@adifferentjoylivingbetterw4972 i actually feel the pain. i t just doesn’t bother me until it reaches levels that are generally viewed as incredibly astounding. for example, i had a TLIF at L5-S1 and the morning after surgery i got myself up at 6 am fully dressed except for my socks and shoes because i literally couldn’t physically bend over to put them on. the surgery was on a wednesday and the following monday i was back at work ready to go. i absolutely feel it but just don’t capitulate to it. that’s what i don’t understand. i am hyper sensitive in almost every physical respect, light, sound, touch, smell and taste. i’d probably be an interesting subject to study.
You sound a lot like me! I wonder why too when I am so sensitive to touch, scents, and lights. I'm not sure why either, I thought antidepressants may be the numbing factor but I have had a high pain tolerance forever.
I wish there was more autistic-led research on this area,@@Fred-ff6bv, it would help so many people!
What even is pain? Where does it start? At what point does discomfort become pain?
I'm autistic, I know that pain cannot be directly measured, pain scales are very ambiguous, and apparently pretty much the only patients/subjects who even consider this ambiguity are autistics. I'm very skeptical about any research on pain
@@frohnatur9806 There are interesting alternatives to pain scores that look at functioning as well as discomfort. Much more helpful, I suspect!