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 think I am caught in a loop here.
Q:. How do you promote engagement in someone who won't or even can't engage?
A:. (As the professionals have told me in the past) You can't because they won't engage. Come back when he's ready.
If we stay as we are then I'm not sure he'll ever be ready though!
I can try to identify the mindset behind all of this and I think it's largely fear and trauma-based. I can understand that and also relate to it to an extent. The world and other people can be scary and the demands overwhelming. To me that indicates that removing these as far as possible should be helpful. I honestly thought that he would gradually come back out of his shell.
Perhaps we're not getting the environment right. Perhaps we don't feel safe enough or our vibe is too negative. We've worked on ourselves though, and the environment here is just about as stress free as possible.
I'm getting very worried that the rest of our lives might just be a continuation of this. Yes, people have told me that, "This too will pass". But after 10 years of this I suspect it might only pass when we pass!
Anyone else have a mucky, hermit relative? Any success in changing things? I'm frankly out of my depth and I actually thought I was quite a deep person!
How do families cope?
The only way I can reason (If you can call it that) is by with holding my sons PIP money, which I absolutely hate doing as he has nothing but this, to fund the little but of enjoyment.. to look forward to from one day to the next.
My son has now stopped his medication for anxiety, as he thinks this is giving him diarrhea, he has just been diagnosed with a eating disorder...
Yes, I feel loath to do this, for fear of making things worse, but there are few options in this situation. The problem would be that it might erode trust which, after so many setbacks with the "help" we sought and persuaded our son to try, is already quite low.
I'm not even sure I could get him to any DWP appointments, as and when they decide they need to do this.
I often feel very alone in seeking help for this and services just dry up for those who cannot seek support on their own behalf.