My ASD Friend In Crisis.

I began my interaction on ASD Forums initially seeking info to help my dear friend who was suffering severe "burnout" at the time, and I was desperate to find her some relief.
I subsequently shared that she recovered, passed her Bar exam and became a qualified lawyer, landed a dream job with fantastic benefits and then, everything went belly up. My friend experiences things "differently." Meditation makes her nervous, she sleeps only 3 hours a night, often when she is sick the symptoms manifest completely differently to most people.18 months ago she had a severe abscess on her lady parts which refused to heal, in addition she got a Staphylococcus infection that is resistant to antibiotics and it began eating her flesh. A few months following that she began having pains in her foot, accompanied by a rotten stench and wound that eventually led to an additional hospitalization. Her glucose was in the 700's range, her foot was necrotic and was almost amputated. My friend had apparently suffered from Diabetes type 2 for many  years with no symptoms at all, no thirst, weight loss, dizziness, weakness, thrush infections, nothing at all. By the time she was diagnosed she had severe neuropathy in her eyes, both legs, heart and is now in the space of a year unable to walk, is at risk of double amputation of her feet and suffered a heart attack 3 weeks ago and 3 stents were put in her heart. Needless to say she had not been having routine blood tests because she felt fine though her executive functioning and lack of sleep seem to impair her judgement  of self-care and cause and effect.  I actually was the first to think of a condition known as Charcot's Foot, which takes years of rampant Diabetes to develop and yes, unfortunately this was the correct diagnosis, suddenly my dear friend is struggling to survive and manage on a daily basis. Two weeks into her fantastic new job she was hospitalized operated on and then rehab.
finally she went back to work and 2 weeks later she had a heart attack. She is 55.
At work they think she duped them and knew she was sick prior to employment. Her disability presents them with legal implications regarding employment termination and everyone is now ignoring her. According to her she is abysmally bad at her job anyway, we had been colleagues at a language school which did not involve too much interaction with superiors and co- workers so she did ok though occasionally fell asleep while teaching. My friend has been denied any financial help or home help by the government though she lives alone and has no support.

My question is, is it common for people on the spectrum to not experience disease/malaise in the same way as neurotypicals? Is there an explanation as to why my friend is seriously and irreversibly physically impaired without feeling any usual early warning symptoms? 


Comments

  • Statest16Statest16 Citizen, Mentor
    I'm not even sure that level of physical disease is even autism related.Those are not any symtoms I have heard of.

    I would say she must be seem immediately at the best possible hospital,I'm not anywhere near in medical understanding to say what's wrong.

    Where is your friend,in Israel or elsewhere?
    One suggestion could be Brigham & womens Hospital  in Boston 617-732-5500
  • Teach51Teach51 Citizen
    My friend is in Israel. The medical care is not a problem, she has received excellent medical care. What is strange is that she doesn't identify physical distress in the same way as another person does. It is possible that she is so used to feeling exhausted and weak that it has become a gauge for feeling healthy when seriously ill. 
  • Statest16Statest16 Citizen, Mentor
    Teach51 said:
    My friend is in Israel. The medical care is not a problem, she has received excellent medical care. What is strange is that she doesn't identify physical distress in the same way as another person does. It is possible that she is so used to feeling exhausted and weak that it has become a gauge for feeling healthy when seriously ill. 
    From the description it sounds like more lady problems than autism problems,that's why I thought of B&W but maybe Tel Aviv Yafo has a good womens hospital 
  • Statest16Statest16 Citizen, Mentor
    Teach51 said:
     It is possible that she is so used to feeling exhausted and weak that it has become a gauge for feeling healthy when seriously ill. 
    Never heard of it but it's possible,has she been tested for any auto-immune problems?
  • Teach51Teach51 Citizen
    No but that's a good idea though her diagnoses are not being disputed. The severe diabetes should have made her feel very ill. The gangrene in her foot didn't register as such, she is an intelligent lady that's why I thought it could be connected to executive functioning and ASD? I don't know. I am so worried about her future. You know how people with ADD/ADHD slow down on Ritalin which is a stimulant for NT's? It has the opposite effect. I thought perhaps ASD could in some cases effect sensations felt when ill and camouflage symptoms, that the brain may read them and react differently. It's misinterpreting the symptoms that is concerning. 
  • AmityAmity Administrator, Citizen
    I have been thinking about this for a few hours Teach and I my guess is that there isnt one factor at play, but a series of interconnected factors, both nature and nurture.

    Im putting together a response.
  • AmityAmity Administrator, Citizen
    I can only relate my own experiences as I don’t know what its like to be in another person’s body or what is normal, for me this is also a conditioned piece.

     

    I discovered 5 years ago that I have had hay fever every summer for as long as I can remember. How could I not know that my sneezing streaming eyes and sniffles were hay fever? Today with some perspective looking back it was obvious, in the moment though it was just one of the many areas that I learned to ignore and distance myself from.

     

    As an undiagnosed Autie, I learned not to trust my perception, eg I was exhausted after socialising, that simply meant that I need to do it more often and for longer to build up my tolerance, my body and mind needed to persevere and try harder as that was what everyone else was doing.

    I didn’t listen to what my mind-body needed.

     

    I’m largely hypersensitive, when it comes to touch based pain I am hyposensitive, I don’t feel it in the same way as a typical person would.

    The explanation I have for this (based on my layman understanding) is the cingulate gyrus in the brain, linked to the limbic system, functions differently in how I perceive pain.

     

    As I understand it, the cingulate gyrus can be significantly affected by diabetes also.

     

     



  • verityverity Administrator, Citizen
    edited June 11
    I think what you are trying to say that her processing of the malaise and pain was different becuase of ASD.

    I think this is entirely possible. As people on the spectrum can have sensory differences, which mean some things may be more or less sensitive. In edition it is possibly that processing of that information is different or less conclusive.

    These are more considered secondary criteria generally, becuase most of diagnosis focused on the behavioural side of modelling. But that is all it is is modelling.

    I personally like to think of having a baseline bodily feeling. I have always felt a weight and a tension in my body. Even from an early age. This is irrespective of muscle tone,

    Another possibility is the enormity of the situation was something her mind could not process, so she effect blocked it out till it was too late.

    Another possibility is she does have type two diabetes but in a rare case the onset was sorter, and complicated by other factors.

    I know that (non-alcoholic) fatty liver disease is now a big problem associated these issue, and thsi was a barely a problem in recent history.
  • verityverity Administrator, Citizen
    In general though many people on the spectrum won't have these issues, and being unable to relate and  possibly not wanting a firm association with it, it won't come under consideration.

    I can see how it could happen however, how common it is I don't know. More common I think is stress responses and behaviour you get with any number of conditions.
  • Teach51Teach51 Citizen
    Amity said:
    I can only relate my own experiences as I don’t know what its like to be in another person’s body or what is normal, for me this is also a conditioned piece.

     

    I discovered 5 years ago that I have had hay fever every summer for as long as I can remember. How could I not know that my sneezing streaming eyes and sniffles were hay fever? Today with some perspective looking back it was obvious, in the moment though it was just one of the many areas that I learned to ignore and distance myself from.

     

    As an undiagnosed Autie, I learned not to trust my perception, eg I was exhausted after socialising, that simply meant that I need to do it more often and for longer to build up my tolerance, my body and mind needed to persevere and try harder as that was what everyone else was doing.

    I didn’t listen to what my mind-body needed.

     

    I’m largely hypersensitive, when it comes to touch based pain I am hyposensitive, I don’t feel it in the same way as a typical person would.

    The explanation I have for this (based on my layman understanding) is the cingulate gyrus in the brain, linked to the limbic system, functions differently in how I perceive pain.

     

    As I understand it, the cingulate gyrus can be significantly affected by diabetes also.

     

     


    Thank you Amity and Verity. I think that as with Amity's hay fever  my friend was unable to put all the pieces of the puzzle regarding her symptoms together. Her mother was very sick for a number of years and so she had no energy remaining to look after herself. I am despondent and sad, it is as if there was no interim period to get things under control, the doctors believe that she must have had such serious diabetes for many years. My friend is a food addict and lived on cakes bread and sugary foods for all these years completely unaware that she was doing herself so much harm though she is struggling now to keep her food appropriate to her condition. I believe that her lack of ability to sense the usual symptoms is related to her sensory processing and inability to see the "whole picture." It is true that the levels of stress just functioning on a daily basis at work, studying law and not having great executive functioning, taking care of her mother brought her to an emotional burnout that was more severe apparently than the physical manifestations of her illness. When in hospital, before Charcot's foot was diagnosed she sent me a picture of an acutely deformed foot with gangrene and was relating to it as if it was as ordinary as an ingrowing toenail. I just googled diabetic foot and found an identical picture and she asked the physician who was trying to save her foot from amputation if he had heard of Charcot's foot. A foot specialist confirmed the diagnosis. Remember she had no history on record of diabetes, Charcot's foot is the result of years of uncontrolled diabetes. Medical staff cannot believe that she didn't know about the diabetes, she is not easily apparent as being ASD until she gets angry and has a meltdown she is a lawyer and an academic and seems very on top of things on the surface.. Many bones in her foot were broken and she wasn't aware of it partly because of neuropathy. I don't know, I suppose I feel as though I have let her down, I have had so much difficulty in my own life I missed the point where the diabetes could be controlled, I missed the signs, the abscesses and tiredness. It is a tragedy. The heart attack was identified by her as "mild heartburn" she had more than 95% blockage of 3 coronary arteries. 

    Verity said:I think what you are trying to say that her processing of the malaise and pain.was different becuase of ASD.

    Yes, just a gut instinct that this was so.
  • Teach51Teach51 Citizen

     Amity said:The explanation I have for this (based on my layman understanding) is the cingulate gyrus in the brain, linked to the limbic system, functions differently in how I perceive pain.


    Then you must please be consistent with your tests and check ups Amity. I wish I had been more vigilant in my care of my friend.

     

  • Teach51Teach51 Citizen
    https://www.sciencedirect.com/science/article/pii/S1053811901908833
    I had to laugh because one of the guys who collaborated on this article is called Frankenstein🙄 
  • Does she still have the position?  

    I'm not sure whether or not she was terminated after the heart attack.
  • I experience pain and other sensations differently from others. This has resulted in doctors not believing me. I can easily believe that I could keep functioning and not notice the symptoms of type 2 diabetes, which are not as pronounced as type 1. 

    There are things I don't feel that others believe do hurt. There are things that are very painful to me and not to other people.  I have no proof, of course, but my opinion now is that the different wiring in my brain screws up more than just executive functioning. It messes with all the senses and interpretation thereof. 

    If you want to send me a name in a PM, I will ask my Quaker meeting to hold her in the Light. 

    Hugs. 
  • Teach51Teach51 Citizen
    Does she still have the position?  

    I'm not sure whether or not she was terminated after the heart attack.

    Yes she is still working KK. Good to see you, I missed you.

  • BenderBender Citizen
    Jesus, I'm really sorry for your friend, she's been through a lot.

    I kept thinking about this, as I had rather conflicting thoughts. On one hand, allistic people can also have a different perception of pain (even other sensations, I've met a surprising amount of people who can't tell the difference between being hungry and thirsty) and poor self-awareness.

    I ended up going on the same path as Amity with this and suspect a mix of nature and nurture. Having some sensorial issues, and especially having issues processing sensations might definitely play a part if your friend struggles with this.

    On the other, the way I grew up, pain was just a given that you had to push through, so aside from not always feeling it the same way as others, I wasn't really considering it a red flag or a sign that something is wrong: I just used to ignore it and brush it off for the most part, thinking "it will pass, it's not a big deal".

    It's very possible that your friend lacks the ability to process some of these sensations in a way that makes sense and sends her an alert signal, and she might also not be that well attuned to her body and lack the needed awareness to pay attention and interpret the signals, especially if she wasn't taught to do this when young.

    I started listening to and understanding my body and its signals later in life, mainly through practising sports and dancing, because that forced me to become aware and pay attention to individual parts and how they all work together, something I was completely oblivious of. And I needed to be taught that my physical sensations are important and telling me something.

    This is just speculation, of course, as I don't know her. But I can see how it could happen and heard other people on the spectrum mentioning both these things.

    I particularly resonate with what Amity said about not trusting my own perceptions, I think a lot of auties learn this. In childhood, any unpleasant or painful sensations were brushed off as nothing, and later some of these things were reinforced by (some) members of the medical profession who got either suspicious or confused by the way my test results and symptoms didn't seem to align well with each other.

    And women, in general, are still taken a lot less seriously by doctors, especially when it comes to pain.
  • Teach51Teach51 Citizen
    I think my friend struggles to verbalize or define physical sensations to herself or anyone else. We were chatting last night and she just couldn't find the right words to explain how she feels. I can offer a possible word and she will say yes that's it or no, not that. I actually realized how severely ill she was before she did, I couldn't get her to agree that there was something seriously wrong. It's a completely different method of reasoning. Even now we argue about what she should eat. I know she should reduce saturated fats and calories (she is very overweight) because she has excess weight on feet with impaired blood supply and has narrowing of the arteries. The argument on her part is that she can have a 6 egg omelet with cream and Camembert cheese and it's okay because it has a low glucose index. I don't actually argue I just say what I think and she gets very angry but that doesn't stop me bringing up the topic. The thinking is very black and white. A few of my suggestions have been implemented and I don't want to cause a meltdown because she has so much to deal with. I have omitted to say that she is very brave and even heroic in the way she is trying to deal with this difficult fate.
    Thank you everyone for your input, it has been helpful. 
  • Teach51Teach51 Citizen
    I experience pain and other sensations differently from others. This has resulted in doctors not believing me. I can easily believe that I could keep functioning and not notice the symptoms of type 2 diabetes, which are not as pronounced as type 1. 

    There are things I don't feel that others believe do hurt. There are things that are very painful to me and not to other people.  I have no proof, of course, but my opinion now is that the different wiring in my brain screws up more than just executive functioning. It messes with all the senses and interpretation thereof. 

    If you want to send me a name in a PM, I will ask my Quaker meeting to hold her in the Light. 

    Hugs. 
    I sent you a PM dear blaze.
  • AmityAmity Administrator, Citizen
    I had to learn in my mid 30s to listen to my body sensations  am still learninv tbh.
    I would be upset for example and not know why, but still was aware that I felt low in mood.

    When I focussed on why I was this way I might recognise through reflecting on an event or behaviour that I felt irritable, nervous for some time etc.

    The next step was to identify where in my body I physically felt this irritable/anxious sensation eg in my shoulders, forehead, stomach, upper chest etc.

    I had to practice body scan type meditations to be able to focus on one type of sensation, which is only possible when in a sensorily relaxed mindset.

    The question on how do i feel is often met with the response of I dont know.
    Even after loads of practice, I still dont know how I feel in a particular moment, but I have a well tested pathway to find this out. I can get back to you about it.

    Once i can identify it, I try different passive and active techniques to ease thd physical sensation, exercise is by far the best all rounder for this, though combined with visualisation has had the most powerful impact

    Perhaps your friend would be more able to identify  physical sensations if it became a skill she started to practice.

    Its not a natural ability for me personally, so it takes practice to make these connections.
    Its also a better use of my energy than forcing myself to be more sociable for example.

    Does your friend have a therapist Teach?
  • Teach51Teach51 Citizen
    edited June 12
    Amity said:

    Does your friend have a therapist Teach?
    Unfortunately no and I doubt if she has the willingness, the money or the time. 
  • Right now, it is probably more important for your friend to eat a low carb diet than it is to lose weight. 

    Most people cannot make drastic changes all at once. 

    My thinking, not knowing anything more than what you have told us, is that concentrating on getting her blood sugar under control should be top priority and that may be all she can do at this time. 

    Once her blood sugar is stabilized, then she can work on the less pressing health issues. 
  • Teach51Teach51 Citizen
    She is doing a good job of stabilizing her blood sugar, I also don't want to put her under anymore pressure, she has enough to deal with as it is. I agree with you blaze, though the damage is already vast and irreversible.
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