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.
JennyButterfly,
I am so sorry to hear how hard everything is for you. It sounds like you are trying your best with everything and finding brick walls wherever you try to get help. I hope that you are able to take the time that you need to destress and recoup.
I hear what you are saying about the personal hygiene and why this is difficult for you as a parent who loves their son even though he's adult. I think as long as he is eating and drinking and engaging in some things, the hygiene can be put on the back burner. A member of my family and I had a discussion about hygiene as they feel people should be allowed to smell natural and everyone else smells too chemically. I understand this perspective as I find showering makes me quite itchy despite my love of feeling clean. I find washing with a cloth in the wash hand basin easier when my skin is too sensitive. Is there an extractor fan in your bathroom which could be a noise trigger? That's something I dislike about my bathroom. Are there certain smells/music that he likes that he could put on when washing to make it a nicer experience? I'm sure you all have tried this and more and it may or may not be helpful. I wanted to share some of my ideas as I can see how you must really be in turmoil with everything.
I hope something changes for the good and you all find a way through this time.
Hugs.
H :-)
P.S. I don't want to above suggestions to sound patronising when you have known your son up until adulthood and done everything in your power to help. I understand how lonely that feeling is because my Dad was bipolar and our family felt very much alone in trying to deal with it. I really hope someone comes along who can offer that support and guidance that you so desperately need.
Thanks H. The only thing he engages with is his computer and online gaming. We've been through rounds of trying to accommodate any sensory needs (lighting, different shower heads, different products of his choosing etc) but, even whilst talking about such things (which these days is minimal due to the lack of engagement with us) there's a sense of him giving satisficing responses so's we'll round up and go away asap. I think any conversations feel uncomfortable for him and raise his anxiety levels so all he wants to do is escape. This means he agrees or says, for example, he wants organic, chocolate scented products or fluffier towels, which we then get but nothing changes.
When he did talk to mental health services, this happened there too - the strategy seemed to be to give minimal but satisficing responses until the professional (be it CPN, counsellor, consultant, whoever) eventually went away. And, given that they have a huge caseload, they always do.
I'm not sure about the back burner for hygiene. Lapses of a few days to maybe a couple of weeks, depending upon needs and mental state, seem reasonable to me. A situation lasting months and years does not.
Our extractor fan in the main bathroom broke last year and I deliberately left it that way because, well, the assumption that every time people use the bathroom the fan must come on has irritated me for years. It's funny really - I'm thinking that, well, barring the most atrocious smells, it's just not needed. And we can always freshen the bathroom by opening a window. I'm glad you mentioned it though, because it's reassuring to feel I'm not the only one with this concern.
Our son also has his own little ensuite though, so it could be adapted to his needs, if only I could gauge what they are. If he does speak to me it's in minimal, monosyllabic, clipped language to the effect that, "It's OK", or "I'm alright". Given his lifestyle though, I'm not convinced.