Published on 12, July, 2020
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 Jenny...
i'm going try try to answer with the caveat that I'm currently a bit drunk and I haven't read any of the other replies, so take it for what you will.
I go through periods of self destruction and self neglect. I have to remind myself to wash and brush my teeth etc. And I am a perfectly functional amd 'successful' human being. I will only shower when I have to go to work, or when I start feeling uncomfortable or itchy/stinky. I can go for days or weeks without it bothering me personally, because I don't notice. When I finally can smell myself. which is probably too late, I get around to doing something about it.
Only going to work gives me the impulse to not be a stinky mess. I simply don't think about these things and I don't notice, until I notice.
I have a skin condition, made worse by lack of washing and shaving, and even that doesn't always motivate me to keep control of it. But I become annoyed, irritable etc when it gets out of control. It gets worse when I'm feeling down or unmotivated, which makes me down and more unmotivated.
I can better control and organise these things when I have a better sense of personal interests and motivation, when I can become more than my own interests, when I can externalise myself. It's difficult to explain. But I think it's about finding a spark. an interest and excitement outside of oneself, some kind of external motivation.
This can be quite sporadic, and is not externally motivated. It comes from within, but needs some form of external impetus.
Or some pride in oneself, whatever that might mean.
That probably doesn't help in any way whatsoever. But it's about finding a spark to engage with the external world.
Thanks Exist. That is interesting and is very much in line with what I'm thinking about motivation and finding the spark inside. It sounds as though you have much more of these than my son, though, who is unable to work (total "hikikomori" state) and too reclusive even to engage with the DWP.
I think this also highlights what might be the crux of the matter. The family sees the situation from the outside in, so can look for signs of any nascent interests or motivation and work with those (NB not in any pushy way but simply supporting) but it is the intrinsic motivation which matters and if we don't see any signs then we are clueless. It honestly looks as though he's seen a little of the adult world, taken fright and taken flight. So there's a danger of anything coming from the outside being perceived as pressure or a demand to conform that he's unable to meet. I don't know how to handle this, moving as we do within a culture which often seems to value a person's working ability above all else - he's a bright lad, he knows what people think and this, I think, makes him want to avoid them even more. If the balance could be altered and shift in favour of interests he wanted to pursue, it'd look very different. As it stands he only seems to have an interest in protecting himself from the world and distracting himself from all the issues by gaming - i.e. negative "away from" activities rather than positive "move towards" interests.