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.  

  • Hi there.  Yes, this is something that I keep backing away from because I'm afraid that, if they catch me on a bad day, I might trigger a mental health assessment for my son - which might seem like a good thing but which, given our history of very bad experiences with services, might drive my son even further into his shell.  

    I wonder whether anyone in a similar position has been offered anything useful?  If so, then the possible benefits might outweigh the costs.  I do keep coming back to the idea but would need to believe that there might be specific help, apart from, say, a bit of respite every so often.  

    I'm in a local carers' group so it's something I could explore a bit more.  

  • Hi Jenny, 

    This must be a very difficult situation for you all.

    Have you had a carers assessment? You are entitled to have one as a carer. It will focus on your needs and how best services can support both you and your son. 

    Good luck x

  • If you don't mind me asking, was there anything in particular that either caused or helped with this?  I guess, though, that there can be lots of factors having a cumulative effect.  

    In our situation I think that, given the severity of the mental health issues, hygiene becomes a low priority.  It really bothers me but I don't think it can be addressed on its own.  This makes it feel more intractable because burnout, withdrawal and almost total non engagement hardly allow for a way in.  

  • After I graduated, in 2001, I let myself go. Then, I got a Civil Service job in 2004. However, I lost that job due to poor personal hygiene. 

    I was a mess back then. 

  • Yes, I feel loath to do this, for fear of making things worse, but there are few options in this situation.  The problem would be that it might erode trust which, after so many setbacks with the "help" we sought and persuaded our son to try, is already quite low.  

    I'm not even sure I could get him to any DWP appointments, as and when they decide they need to do this.  

    I often feel very alone in seeking help for this and services just dry up for those who cannot seek support on their own behalf.  

  • The only way I can reason (If you can call it that) is by with holding my sons PIP money, which I absolutely hate doing as he has nothing but this,  to fund the little but of  enjoyment.. to look forward to from one day to the next.  

    My son has now stopped his medication for anxiety, as he thinks this is giving him diarrhea, he has just been diagnosed with a eating disorder... 

  • I think I am caught in a loop here.  

    Q:. How do you promote engagement in someone who won't or even can't engage?

    A:. (As the professionals have told me in the past)  You can't because they won't engage.  Come back when he's ready.  

    If we stay as we are then I'm not sure he'll ever be ready though!

    I can try to identify the mindset behind all of this and I think it's largely fear and trauma-based.  I can understand that and also relate to it to an extent.  The world and other people can be scary and the demands overwhelming.  To me that indicates that removing these as far as possible should be helpful.  I honestly thought that he would gradually come back out of his shell.  

    Perhaps we're not getting the environment right.  Perhaps we don't feel safe enough or our vibe is too negative.  We've worked on ourselves though, and the environment here is just about as stress free as possible.  

    I'm getting very worried that the rest of our lives might just be a continuation of this.  Yes, people have told me that, "This too will pass".  But after 10 years of this I suspect it might only pass when we pass!

    Anyone else have a mucky, hermit relative?  Any success in changing things?  I'm frankly out of my depth and I actually thought I was quite a deep person!  

    How do families cope?

  • Many thanks.  Our son hasn't had any sensory profiling done, nor even a proper autism assessment as, after being discharged from mental health services (on the basis that there was no evidence of mental illness, just of Asperger's) he refused to see any more professionals.  Basically the Autism Team came in the front door and he legged it out of the back door, protesting that "I don't have autism!" He's an adult and they're forced to respect his wishes.  

    The difficulty now would be in encouraging him to re-engage, especially as the years with mental health services were so damaging and the suggestion of autism only came at the very end (and after loads of failed attempts to medicate and therapise him, all of which he was against but which were forced upon him to prevent hospitalisation).  

    Anything we can now do would have to come through us and be suggested, very gently, as and when he is open to new ideas.  And quite often I am left feeling like an ogre because when I go into a room, he tries to exit as quickly as possible.  Contact seems to panic him and I don't think we've been able to rebuild trust after all of those mental health appointments.  Now he says,"No" automatically to anything we suggest so we have to cautiously seed ideas and hope that some will take root.  They might not.   

    I'm open to buying in services.  I'm basically so desperate that I'd remortgage the house for anything expensive if I felt it might help.    But we'd need some buy-in from him and this is exceedingly difficult to generate.  I basically don't know how to promote engagement although what we're doing is:-

    - maintaining a calm, cosy environment

    - providing foodstuffs he'll appreciate (I often "speak" to him through food)

    - making only few demands (he probably has a PDA profile)

    - being available, should he wish to discuss or ask for anything

    - leaving him with open ended offers of whatever therapy or support he might choose

    - generally remaining person- centred and respecting his choices.

    I had hoped that this, plus my counselling training, would put us in a much stronger position.  Unfortunately, while it might have helped to prevent things getting worse, we've seen no improvements and I've yet to get to know my own son as an adult (the issues started when he was 15/16 and he's now 27).  

    As it stands I would like a neurodivergent practitioner of some experience to give me some robust advice and guidance (NB. Not so much counselling as the provision of an empathic, understanding relationship without any guidance just leaves me feeling short-changed.  Giving me space and empathy doesn't enable me to come up with my own solutions - they're just not in me to be called upon).  So yes.  Coaching, advice and guidance is what i'm seeking now.  

  • Yes, I have learnt to feel that the whole concept of readiness is being used to keep us from getting any help.  Likewise "insight", as if this is going to magically materialise from the depths of a person's psyche. 

    We don't have any choice any more though, as our son refuses to engage altogether and services aren't geared up to promote engagement. 

    Of course, promoting real engagement would take time to focus on building a therapeutic relationship and individually tailor any support, which might just prove too expensive.  Sigh.. 

  • Oh my gosh this sound just like my son.  He is 22 years old but has reasoning of 15years.  I have tried to get him help from different services, as he has no social interaction outside of the house.. and he point blank refuses..  I too get told, "contact us again when your son is ready"  I don't think he will EVER be ready as he is so content being in his comfort zone.. 

  • Dear Jenny Butterfly I am so sorry to hear about the difficulties you are facing.

    It echo's some of my family's situation and at the very least I hope you find comfort in that.

    Forgive me if you have tried the suggestions I am making. They have made various degrees of difference for our son depending on his current state of mind and his OCD prevalence at the time.

    Our son found an outlet through a love of music and has studied that online and virtually. The recent pandemic has bought some pluses in that education online has opened up considerably. If your son has a passion for gaming could you enrol him on a virtual online course related to gaming which may involve interacting with people via his computer but may be a good start. Forgive me I am not sure of his age so suitability of that suggestion.

    The sensory approach to bathing works or helps to varying degrees, I understand. You may have done this already but I paid for a full sensory profile to find out specifically what my son's sensory difficulties were. It involved a series of physical tests that were not unpleasant for him and produced a report. The major gold nuggets we found were that he could tolerate baths much more easily than showers so I managed to persuade him to have a bath on a more regular basis now. He also finds white noise comforting. Strangely enough an extractor fan is very similar to white noise but he has a machine to produce this now and takes it into the bathroom with him,

    It sounds as it feels as if you have not made any progress at all and I completely understand that feeling but I am sure with the determination I am seeing in your writing you will. I do hope that the community's  messages and ideas can give you a little understanding and support and my greatest wish for you some ideas that make a difference.

    Happy to continue to discuss/chat on this forum to try and find something to help

  • Unfortunately already tried some years ago.  He is very much of the belief that anyone who doesn't accept him as he is, isn't worth getting to know.  Plus, of course, having dropped out of college twice some years ago and continuing, over a period of months, to refuse to go out with friends when they called round, he now has nobody outside the family and never joins anything outside the home so that new contacts could be made.  

    Total withdrawal.  Living like a hermit.  Afraid of others.  Anxious and extremely avoidant.  Probably traumatised by experiences at school and college (including bullying).  I don't know what to do but as each year passes it feels more and more like an unreal nightmare.

  • Tell him that girls won't fancy him unless he changes his ways.

  • Thanks PersonAnon. That is still appreciated.  

  • This sounds awfully trite, and I hope you won’t take it that way, but I feel so much for you.  I can’t do much, in practical terms, but offer to be around, on here, when you need to talk to someone. 

  • I'm in a couple of local support groups for parents of adult autistics, but even there our issues aren't common.  For example, many of the group members have adult offspring who also have learning disabilities, who were identified very early in life and who are just seeking the continuation or improvement of services.  And, strangely to me, it's always the non autistic parent who attends so this reduces the commonality too.

    I do buy in what I believe are some very good autistic-led courses and webinars, but even within these, the issues around burnout and poor hygiene are treated as more episodic or resolvable via consideration of sensory factors and the environment.   It may, of course, be that that's the case but there's no advice on how to cope when it's taking years and those years are really quite important years in a young person's life that they won't be getting back.  

    My last round of psychotherapy (cognitive analytic therapy) concluded with a formulation of my issues but referred me back to the GP with the observation that my preoccupation with our son's issues was hindering my own therapy and limiting what could be done.  

    So now what I'm wanting is some 1:1 coaching/supervision-type counselling (preferably from a neurodivergent practitioner) that can focus on family dynamics and what we CAN do to improve things.  

    Other than that, the obstacle seems to be that I'm seeking help for my son's issues rather than my own, although I would argue that when one person is in this state, it inevitably affects the whole family.  It seems that 1:1 help is for individuals, not families, unless, of course, it's families with younger children (under 18).  Our youngest age of diagnosis is 26.  

  • OK.  Do you actually have any support at all, at the moment? Or are you entirely left on your own?

  • Thanks PersonAnon. We do what we can (been through rounds of self help, various interests to distract or entertain, counselling, counselling training, supportive, relaxing practices in the areas of yoga, chi kung, meditation and visualisation, plus more besides).  But always, always, we come back to these core issues and I don't think our own mental health is likely to be restored until they change.  If they can't change then I feel very afraid about the future.  

  • Yes, the pandemic has certainly added a top dressing of additional misery and worry.  Of course, our son won't engage with services to the extent of having a vaccine either.  

    But really, as a family, we've felt locked down for around 10 years.  This is no longer the kind of house where people can just be invited round, irrespective of Covid considerations.  And this looks set to continue no matter what the virus does.  

  • One thought that does occur to me is this: are you looking after yourselves?  Your son is clearly dependant on the family, at the moment, and it's no good to him if you burn out.  

    As others have said I'm cautious of suggesting something that you'll have thought through many times and don't want to appear patronising so apologies if the comment is simply annoying.

    For most of my working life I was a bit hard-charging and I was the last person on earth to believe in the value of "mumbo jumbo" but now, when it all gets a bit much, I fight like hell for an hour to do Pilates, or meditation, or both.  I've learned a lot about Pilates and can just get into it if I have some space; I found it hard to get to grips with, but it has actually been transformational in terms of my coping strategies.  I'm newer to meditation but I can already see the benefits.

    But whatever it is that you do, for yourself, I hope you're finding some space to do s-o-m-e-t-h-i-n-g.   

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