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.
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.
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.
OK. Do you actually have any support at all, at the moment? Or are you entirely left on your own?
Thanks PersonAnon. That is still appreciated.