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 Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and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?
Hi, I pretty much identify as hikikomori. I am trying to recover.I was late diagnosed with autism too.I wanted to tell you (or make sure you know already!) about a YouTuber who got himself out of a severe hikikomori state - his name is Hiroshi Yamazoe. I have found his videos very helpful and he has also set up a discord server for hikikomori (global hikikomori community).https://www.youtube.com/c/HirosiYamazoe/about
There is also another hikikomori guy on youtube, Nito Souji, I think he became a successful game developer even though living as hikikomori.
https://www.youtube.com/watch?v=CtTJlKt21YE
Hope these channels could be of some help.
Thank you so much for that, I will take a look. I hope you have support to help you in your recovery. Do you mind me asking, was there any one thing that tipped you over the edge into being hikikomori or do you think it is directly linked to your autism? Do you have any advice for me in how I can best support my son to help him recover? I know he needs to want to recover, I'm sure he does want to but the way he's living now is very safe and comfortable and undemanding, recovery means feeling uncomfortable, pushing through that discomfort, and feeling ready to step out of his comfort zone. Sorry for so many questions, I completely understand if you don't want to answer. Thank you again for your reply.
Iamme said:Do you have any advice for me in how I can best support my son to help him recover?
Hi, sorry for my very slow reply, interacting online is also difficult for me, but I related to so much of how you described your son that I wanted to respond..The number one thing that would have helped me at his age (I am a lot older at nearly 40) would have been to know I was autistic and to receive appropriate support. The standard mental health services I was under were absolutely unsuited to autistic people’s needs and they did me much more harm than good because of this. It was really damaging in some instances and resulted in a (justified) total refusal and mistrust of them.So my advice would be to see if your son wants to find out if he is autistic (if he recognises it in himself and it brings him self-understanding, the formal diagnosis is secondary for it to help, in my opinion). If he is, it sounds like he has a very supportive environment, which is the other thing I myself would have needed.
How are you both getting on?
Hi, that was a really kind thing to do for your son over Christmas. And some really good practical steps with doctors, benefits etc.
I wondered if you would like to DM since I'm not so comfortable posting publicly? If so send me a friend request :) and I will do my best to reply!
Also just wondered if you know this book https://www.goodreads.com/book/show/16128831-hikikomori - I only just found it and haven't read it myself yet so cant comment but since there's not much in English about hikikomori I thought maybe worth sharing.