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.
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?