Published on 12, July, 2020
My adult son continues to live what seems, from the outside, to be a life devoid of most of the preoccupations and activities of his peer group. Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and unwilling to engage either with services or ourselves as parents.
It seems akin to a hikikomori state, with self neglect thrown in. But all I can find about this kind of withdrawal is descriptions, no advice on finding a way through.
In the past services have been involved, including crisis and early intervention teams. None of their therapies or meds helped - in fact they only made him withdraw still further - and they eventually just discharged him on the basis that he's not mentally ill but rather has a condition, that condition being Asperger's.
As the years go by, I losing hope. My superficial reaction is, "Where has my son gone?" However, I know he's still there. We just can't reach him. This has been going on since he was 17 and he's now 24. I don't feel as though i've known him as an adult. And he avoids most conversations which are limited to brief exchanges about food.
What on earth can parents do? This is breaking us. Does it just go on for ever?
Has anyone else coped with this kind of situation?
To me it feels as though, once services have been tried and fallen short, it becomes easy to slip into a pattern of just living around the reclusive person, even though that could, in many ways, be seen as a form of enabling.
I have the thought that, in the end, the person's own vital force or self actualising tendency would win through. But if not then I don't know that there's anything on which we can rely.
Meanwhile, other young people on the family who are getting on with their lives just serve as a reminder of what our son is missing out on. :(
I first heard of this on BBC news, where in Japan they have "rent a sister", they don't have any special skills or qualifications, they are just experienced in dealing with people in this state.
www.bbc.co.uk/.../rent-a-sister-coaxing-japan-s-hikikomori-out-of-their-rooms
Yes, this sounds very similar. There is also a background of school bullying (of which we were never informed) plus he is very nocturnal. I had sort of expected that specialised therapists or peer group support would be provided and slot into a role akin to a "rent a sister" in that I thought they would first of all work on building a therapeutic relationship and then move on from there. E.g. begin in small ways by talking through the door, building trust and maybe communicating via letters or text. But no. It was full on therapy or nothing. So nothing then, because all an NHS therapist (or most other therapists in fact) will do is say, well, this person is unwilling to engage so we need to wait for this willingness to emerge. Alas, it never does, so we're stuck. i think I need the "rent a sister" manual myself. I just don't know what to do.
Does your son talk to other people online? Or have friends online?
I find it so shocking that in a situation as severe and entrenched as this that there really is no service that can really help you and your son with this. It must be totally heartbreaking to witness your son struggling in this way. And a huge strain on you and your whole family. I wonder if talking online to someone in a similar position might be helpful for your son? Someone who really understands what he’s going through because they’ve been or are going through it too?
I’m sorry - I wish I could help x