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@@artofmkd what a brilliant explanation. Thank you so much for sharing that!

@@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….

@@theJellyjoker there is definitely something in that!

@@frohnatur9806 There are interesting alternatives to pain scores that look at functioning as well as discomfort. Much more helpful, I suspect!

@@Dreamazium thank you 🙏🏼

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).

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

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.

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’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.

Hi Chris. Please drop me an email to Sarah-jane@differentjoy.com and let me know what you need.

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 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'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!

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.

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.

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.

Oh I recognise that - especially the bruising!

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.

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!

That is a picture from someone who was convicted of the offence we are talking about. I am always aware though, that in other situations is may be a sensory need that the child had. We might need to be curious about what the situation is, rather than making assumptions. It's not always easy to know what is really going on!

@@adifferentjoylivingbetterw4972 A "sensory need" is nonsense. The mum's responsibility is to take away the dummy, period.

Way to prove you know nothing about autism.

@@robokill387 Autism is the result of silly wonan not taking away the dummy. I treat autism.

Oh, I really feel you in that! I've had a LOT of dental treatment and it is very variable!

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.

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!

I can think of lots of reasons why that may be the case. Why is it for you?

It can be impossible to process more than one thing at a time. Thank you for sharing that @Mandaxx25!

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

Go for it, and let me know what you think... (Oh, and LIKE & SUBSCRIBE!)

I'm curious as to WHOSE routine that is? One I have chosen, is very different to someone else's....

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.

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

❤

I'm curious... do yo think that was because it didn't hurt, or it did hurt, but you didn't cry?

You are welcome! 🙂

Sometimes, It's hard to know that it IS different when that is the only version we have ever known.

Hangry is a real thing lots of us have!

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

Thank you! It's probably time I did an update too now though!

Thank you!

I am interested as to why you think that. Is there any evidence you can point to?

@@adifferentjoylivingbetterw4972 The full evidence can never be collected unless 24/'7CCTV cameras are installed in every home from the moment a newborn is brought. So, firm evidence will never be available. I correlate my personal experience working with autistic and ADHD kids and seeing their mothers in action. I hope also you studied the works of Bettelheim, Lovaas, Dolto, nowadays they are not recommended (for the reason of the industry not needing cures, but sustaining itself by lifelong clientele staying autistic for life). The mothers are not deliberate, they just believe that they parent correctly, but in fact they are doing anti-parenting. There is nothing special needed to raise an autistic or disordered in other way child. Lots of skills is needed to raise a child who will by age 5-6 considered normal. Same as it is very easy to plant a rose bush and it will fail to thrive, but much harder to actually plant and grow a healthy plant. Social services are very right. However, social workers themselves carry their class bias. And this could be dangerous for bi-cultural kids. But the bottom line is: ANY three year old is VERY simple to deal with. If a mother struggles, he cannot effectively parent. Look back at your difficulties and recollect when they started.

@@adifferentjoylivingbetterw4972 I wrote areply, but it is not here. Possibly some words are flagged at your channel.

@@svetavinogradova4243 I don’t think there are. I would be interested to see if there is research that suggests that might be the case. There is lots of research on autism diagnoses. I have seen no evidence of that.

@@adifferentjoylivingbetterw4972 There is some research of parenting styles, but quite limited. Researchers depend on grants, the articles have to be peer-reviewed, the political line now is that a parent can bring her baby home, put into a cupboard, take out 6 times a day to feed and change, and at age 16 take out a ready mentally healthy teenager. If parenting does not influence autism, then this follows. The problem is that in the UK medical cases qualify for no-costs rule, so any mother can sue the state medical establishment, fail at her claim but the state will cover its costs without being able to take these from that mother. So, avoidance of any legal problems follows. there will be no research in the near future. if your child is autistic, I can ask you several questions about your parenting and I already know your answers. We can try.

I obviously can't comment on your individual case, as I do not know the facts, but it does not sound from what you said as if all the facts have been considered. We all agree that we should protect children, but we do have a system biased against families - See Professor Luke Clement's report 'Institutionalizing Parent Blame' for details.

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.

Actually I think I am, given that my channel is all about autism and special needs. There are a lot of parents of disabled and autistic children who are accused of FII but where that is not what is happening. The report on 'Institutionalising Parent Blame' by Luke Clements and Cerebra is helpful in understanding the situation.

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!

Absolutely! It always has to start from the person themselves. Because we are all so different, when we have multi-layered anxieties, it can easily tip into demand avoidance. Working out what 'good' feels like makes all the difference!

Thank you kindly! I'm glad you liked it. Please feel free to share with people who you know will find it helpful.

Wow, that is a lot for your nephew to deal with. My point isn't that no-one ever harms children this way, but it is very uncommon. I hope that she has found help so that she could meet her needs in a way that hurt those around her, especially her child.

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.

I am so sorry to hear that Dainty. It is a very brave thing to admit to. Please find a way to get help for the abuse you suffered. You can do it anonymously, and it will help you to start to heal from your awful experience. Sending love to you.

Yes definitely. Choices can be overwhelming. You might find it helps to offer no more than 2 options. When really anxious, autistic people can become much more demand avoidant. Research has shown that ABA causes trauma in autistic people and increases PTSD, so I am really glad that he is no longer having that therapy. Please don't think that I am criticizing you for allowing him to have that at the time - God knows I have made many mistakes in my own parenting. When we know better - we do better! Well done for finding someone who can work together with him in a kinder way. I am sure it will make a massive difference to him in the moment and in the long term!

Thank you Fedora! Compliment accepted! :-)