Hikikomori, how can I get my adult son back?

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  Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and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?

Parents Reply Children
  • 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 

  • 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.