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.
I sometimes struggle, I've been in situations where, while I've put clothes on, I haven't had a shower for a couple of days. Sometimes it's just a struggle, maybe not to motivate yourself, but even just to see the point in doing so. Especially if you have had negative experiences.
I don't really know what the solution is. It comes and goes for me, very mood dependant. I've been lucky in that, while the services I have used have been rather miss than hit. My GP has been a total rock of support. He's been my GP since we came back from Germany in 1997. I've been wondering a lot recently what I will do when he eventually retires, hopefully not too soon, but yeh. He's got 15 years of understanding.
On the other hand, we have a community mental health team with a social prescriber who offered to help me with a housing apication, kept telling me she'd do so for 4 months of calls every 2 weeks... then decided she wouldn't. And then just didn't bother phoning when she was meant to anymore. Despite her making appointments with me... I then made appointments myself with the admin team 3 times. But the social prescriber didn't bother calling at all, so I gave up.
Thanks Chris. I sometimes struggle as well, but again for short periods, after which I start to buoy up again. But here it's been going on for years. The GP is aware but basically just offers a few sympathetic words, no advice or signposting towards actual support. And even local autism organisations can't help.
I think that, in the case where individuals are able and willing to reach out for themselves, there are more possibilities, even if services very often don't live up to their promises (like your social prescriber). But in this case there is zero chance of our son reaching out. ️
It feels as though we need a family guide to burnout, withdrawal and self care because, even while he isolates himself from everything, there are repercussions within the family and we simply don't know what on earth to do.