Self neglect

We're still struggling with issues around severe, chronic burnout, withdrawal and self isolation (mostly within just one room) in our adult son.  The thought occurs to me, especially given that this has led to very poor personal hygiene, absolute refusal (or inability) to engage with services or even, for much of the time, with family members, does this all at some point become more than self neglect and turn into more of a safeguarding issue for which we, as parents are responsible?  

If so, what on earth should we be doing for someone who has capacity but who uses this to refuse all help, especially understandable since his experiences with services have been entirely negative, even leading to a worsening of issues in the past?  We would hate to (once again!) enlist the help of any service which isn't autism friendly, approaches issues clumsily then leaves us in a worse position with well intentioned but ultimately useless suggestions like getting back in touch when he's willing to engage (this just isn't going to be happening any time soon) and comments such as, "We've never met anyone so unwilling to engage.  If only he would engage then ..." - i.e. simply echoing our difficulties back to us, withdrawing from the situation and leaving us without any support.  

This all feels very much like a stalemate situation but one in which we could be, while emotionally exhausted and trying to do our best, colluding with the neglect and thereby failing in our responsibilities and duties to our son.  

Parents
  • This all feels very much like a stalemate situation but one in which we could be, while emotionally exhausted and trying to do our best, colluding with the neglect and thereby failing in our responsibilities and duties to our son. 

    Morning JB,

    Just checking in on how you are.  I've been thinking a lot about everyone on here and any thoughts I can share to perhaps help.  I understand how devastating it will be to feel you are trying and seemingly without response from your son.  Something I noticed from another post you replied to that may or may not help.  You were discussing your journey and how you were/felt as a child growing through to an adult.  You mentioned your need to disconnect.  I wondered if your son is going through a similar journey?  I wondered how you felt if others tried to help/change how and where you wanted to be?  How did you feel at that time and what did you want others to do and not to do?  You may have already focussed on this angle and made this connection.  Perhaps the time when you emerged from your own personal cave may be something that could happen with your son?  

    I hope the edibles are helping you and that other things in your life give you some joy whilst you are dealing with the situation in hand. Sending hugs if that helps. 

  • Morning H and thank you.  One of the more memorable group exercises we did on one of the counselling courses I attended revolved around sharing various emotional difficulties but then going inwards to consider others' issues, with the simple but searching question in mind, "Where is that in me?"  

    In recent years, this question keeps popping back into my head, particularly with respect to my sons and particularly given the underlying genetics.  It would be remarkable, I think if there were not at least some degree of overlap.  No two individuals can share exactly the same experiences as well as genes, of course, but it does seem to me that some differences between myself and my sons are a matter of degree rather than the kind of suffering involved.  So I do drill down to try and glean something from the overlap I know to be there.

    It does remain hard for me to separate out the elements that are truly rising from within me from external knowledge I've acquired over the years, because honestly, I've been looking for answers since I was about 13/14, when the awareness that I was somehow different from others really started to trouble me.  There is now a very complex mix of what I feel to be the core me and various acquired versions of self that have taken a long time to build up, with the voices of experts beginning simply enough with Clare Weekes ("Self help for your nerves which I picked up in the library when I was about 13) and then encompassing quite a range of texts, then courses, then online resources.  The external stuff only ever got me so far so I try to park it to one side for these purposes and just sit with what I feel to be me, my family, our commonality.  

    And what do I find?  I don't get very far, it's true, but I do find a deep discomfort with the world, with feeling forced into getting out there and being whatever people try to put on us, with meeting expectations, with just generally going and getting, forced to earn our keep.  

    Interlude for a little piece of poetry that has always appealed to me...

    " The world is too much with us; late and soon,

    Getting and spending, we lay waste our powers;—

    Little we see in Nature that is ours;
    We have given our hearts away, a sordid boon!"   ...

    OK.  Perhaps strange of me to say I'm drilling down into myself and avoiding external views and then up pops William Wordsworth!  But these lines seem to encapsulate a lot of what I've always felt.  I just wanted to be left with my reading, gardening, maybe a bit of artwork and a few relationships to get me through.   Once I was forced to move away from those things, the anxiety increased.  And then increased exponentially as more and more was loaded onto me.  School was the first experience of this because it felt as though nothing was ever enough.  Good marks?  No.  You've shown you're intelligent so you can do better!  O levels?  No.  With those grades, you must do A levels!  University?  No!  Now you've done so well you need to hold down a high-earning job because otherwise you'll be wasting your "potential"!  And on and on.  

    I honestly think that my son got caught up in this too.  And that, as with me, it was complicated and exaggerated by bullying in the playground and a consequent retreat into even more academic stuff.  I managed to offset some of this a fair bit with the help of my first boyfriend, who pursued me relentlessly while I was too stricken with anxiety to respond for quite some time.  I think I wanted others to make some effort because I felt stuck and just couldn't, but this young man took it to the nth degree.  I probably used him rather badly for a couple of years.   

    Other things I wanted?  Well, once it was let out of the bag, my sex drive got me out of the house, although I had to use copious amounts of alcohol to do any pursuing myself.  I also felt desperate to escape poverty, so that spurred me on too (yes, even tho I'd have been much more comfortable in a garden centre than in a finance office).  Maybe I just wanted some very basic things in life - sex and money - and the lack of those things might have made me feel even more anxious (NB for another conversation - I might need to talk about using sex excessively as a kind of stim!).  If my family could have provided  more financial support, that would have helped and might have de-escalated the desperation.  We basically lived in a slum and feeling ashamed of it added to my anxiety and disconnect from others.   

    That said, long talks with my mother also helped a lot.  Her unwavering love and support gave me a lifelong foundation on which to build.  I am hoping that my son feels the same.  It's hard to have faith in this when he runs away but ultimately I do.  Maybe moreso because it's challenged and I have to think about it.  Knowing you're loved in this world is a huge help!

    What else did I want?  Well, just acceptance and inclusion really.  And I can only provide this for my son to an extent.  I think I chased it (and probably chased it away at times!) but his response has been to retreat from the lack of it, like a wilting plant.       

    I will give this some more thought as you've raised some important questions that need some mulling over.  

    The self neglect is a strange thing, I find.  I maybe became excessively hygienic and concerned about appearances, firstly as a reaction to the state my dad got into and secondly to feel more acceptable and attractive.  I think, as I've mentioned in other threads, i almost became a parody of what I thought I woman was supposed to be.  But I can see how the same anxieties about fitting in, seeing yourself fail at this again and again, and somehow never measuring up can send you in another direction.  e.g. Dental hygiene.  Dad's teeth were black from decay, I used just about every product available on mine, my son just leaves his to go the same way as dad's.  Maybe I was anxiously redoubling my efforts (and also maintaining my anxiety) while their response to very similar stressors was to feel too depressed to do anything.  It sort of feels as though it's all on the same continuum, just different ends.

    Anyway, I'm going to have a cuppa and think some more.  And maybe tend to my indoor plants to give a bit of space for more to emerge.  :)   

        

Reply
  • Morning H and thank you.  One of the more memorable group exercises we did on one of the counselling courses I attended revolved around sharing various emotional difficulties but then going inwards to consider others' issues, with the simple but searching question in mind, "Where is that in me?"  

    In recent years, this question keeps popping back into my head, particularly with respect to my sons and particularly given the underlying genetics.  It would be remarkable, I think if there were not at least some degree of overlap.  No two individuals can share exactly the same experiences as well as genes, of course, but it does seem to me that some differences between myself and my sons are a matter of degree rather than the kind of suffering involved.  So I do drill down to try and glean something from the overlap I know to be there.

    It does remain hard for me to separate out the elements that are truly rising from within me from external knowledge I've acquired over the years, because honestly, I've been looking for answers since I was about 13/14, when the awareness that I was somehow different from others really started to trouble me.  There is now a very complex mix of what I feel to be the core me and various acquired versions of self that have taken a long time to build up, with the voices of experts beginning simply enough with Clare Weekes ("Self help for your nerves which I picked up in the library when I was about 13) and then encompassing quite a range of texts, then courses, then online resources.  The external stuff only ever got me so far so I try to park it to one side for these purposes and just sit with what I feel to be me, my family, our commonality.  

    And what do I find?  I don't get very far, it's true, but I do find a deep discomfort with the world, with feeling forced into getting out there and being whatever people try to put on us, with meeting expectations, with just generally going and getting, forced to earn our keep.  

    Interlude for a little piece of poetry that has always appealed to me...

    " The world is too much with us; late and soon,

    Getting and spending, we lay waste our powers;—

    Little we see in Nature that is ours;
    We have given our hearts away, a sordid boon!"   ...

    OK.  Perhaps strange of me to say I'm drilling down into myself and avoiding external views and then up pops William Wordsworth!  But these lines seem to encapsulate a lot of what I've always felt.  I just wanted to be left with my reading, gardening, maybe a bit of artwork and a few relationships to get me through.   Once I was forced to move away from those things, the anxiety increased.  And then increased exponentially as more and more was loaded onto me.  School was the first experience of this because it felt as though nothing was ever enough.  Good marks?  No.  You've shown you're intelligent so you can do better!  O levels?  No.  With those grades, you must do A levels!  University?  No!  Now you've done so well you need to hold down a high-earning job because otherwise you'll be wasting your "potential"!  And on and on.  

    I honestly think that my son got caught up in this too.  And that, as with me, it was complicated and exaggerated by bullying in the playground and a consequent retreat into even more academic stuff.  I managed to offset some of this a fair bit with the help of my first boyfriend, who pursued me relentlessly while I was too stricken with anxiety to respond for quite some time.  I think I wanted others to make some effort because I felt stuck and just couldn't, but this young man took it to the nth degree.  I probably used him rather badly for a couple of years.   

    Other things I wanted?  Well, once it was let out of the bag, my sex drive got me out of the house, although I had to use copious amounts of alcohol to do any pursuing myself.  I also felt desperate to escape poverty, so that spurred me on too (yes, even tho I'd have been much more comfortable in a garden centre than in a finance office).  Maybe I just wanted some very basic things in life - sex and money - and the lack of those things might have made me feel even more anxious (NB for another conversation - I might need to talk about using sex excessively as a kind of stim!).  If my family could have provided  more financial support, that would have helped and might have de-escalated the desperation.  We basically lived in a slum and feeling ashamed of it added to my anxiety and disconnect from others.   

    That said, long talks with my mother also helped a lot.  Her unwavering love and support gave me a lifelong foundation on which to build.  I am hoping that my son feels the same.  It's hard to have faith in this when he runs away but ultimately I do.  Maybe moreso because it's challenged and I have to think about it.  Knowing you're loved in this world is a huge help!

    What else did I want?  Well, just acceptance and inclusion really.  And I can only provide this for my son to an extent.  I think I chased it (and probably chased it away at times!) but his response has been to retreat from the lack of it, like a wilting plant.       

    I will give this some more thought as you've raised some important questions that need some mulling over.  

    The self neglect is a strange thing, I find.  I maybe became excessively hygienic and concerned about appearances, firstly as a reaction to the state my dad got into and secondly to feel more acceptable and attractive.  I think, as I've mentioned in other threads, i almost became a parody of what I thought I woman was supposed to be.  But I can see how the same anxieties about fitting in, seeing yourself fail at this again and again, and somehow never measuring up can send you in another direction.  e.g. Dental hygiene.  Dad's teeth were black from decay, I used just about every product available on mine, my son just leaves his to go the same way as dad's.  Maybe I was anxiously redoubling my efforts (and also maintaining my anxiety) while their response to very similar stressors was to feel too depressed to do anything.  It sort of feels as though it's all on the same continuum, just different ends.

    Anyway, I'm going to have a cuppa and think some more.  And maybe tend to my indoor plants to give a bit of space for more to emerge.  :)   

        

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