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 Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and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.
Hi there,
Happy New Year to you and thank you so much for responding, I really do appreciate it. I think I really do need to raise the autism thing with him. On a possibly helpful note, a friend of his who he was really comfortable with and who is a little older, has autism. He's such a lovely young man, his mum is a therapist and he really does have his head screwed on, I like him a lot. I'd bumped into his mum in the autumn and discussed the possibility of him trying to engage with my son again, my son has cut off all friendship contacts. The fact that this particular friend has a diagnosis may be a way in for me talk about the possibility that he also has it.
This year we decided to have a very low key Christmas and not invite my parents to stay or have anyone in the house even for a drink or a meal. This was because we know how stressful it is for our son and when my parents stay he completely hides in his room, they never see him. They'd stayed for 2 nights in November and we thought Christmas was too close to that visit. We are supportive as it's all we can be under the circumstances. We don't exert any pressure of any kind on him at all. However, this year, following a conversation with another mother of a Hiki son, I am going to write a letter to our gp which will be signed by him to give permission for them to talk to us regarding any health needs - he had an infection last year and needed antibiotics, and it would just make things a little easier for him if the doctors know they can discuss things with us when he is unable to engage with them fully. Then we will help him to open an online bank account (he's refused to open one with a local bank because it would require him to leave the house) and once he has that apply for benefits for him. It feels awkward because we don't need the money, he doesn't need the money he spends almost nothing. He has several hundred pounds in cash in his room from gifts, this past year he spent about £10 or so on a guitar string he asked me to buy. That's literally it. He never wants or asks for anything apart from the occasional string or computer game. The reason I want him to have benefits is so that he's known and in the system in case anything happens to us leaving him with no access at all to money. He needs to be able to order food etc online. I don't want his sister to have to start from scratch when we die. We also need to assign a solicitor to act as some kind of guardian to again so that responsibility doesn't land on his sister. Hopefully that's all a long way in the future and hopefully he will have become more independent by then. It's all such a worry and just so very sad. we want him to have a good life, but perhaps this is what a good life looks like for him at this moment in time, he's safe and cared for and about by people who love him.
The one other thing we need to achieve this year is a holiday for myself and husband, it's been 7 years since the last one and this year is my husband's 60th birthday so it would be lovely to go away for a week and have his sister and her boyfriend live in our house with him while we are away. Her boyfriend is the only other person apart from us that he will talk to. He doesn't want to be left on his own so this is our only option.
I can't remember if you've said but do you work?
Many thanks again for your reply.