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 Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and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.
Many thanks. I've watched a couple of these, subscribed and will have a look through the rest over the next couple of weeks. Anything that instills hope is good. However, I expect I will need to kind of transpose some of the core themes into a third person perspective - i.e. how to help and support as a parent/carer rather than how to reach out or change things for myself. Unfortunately our son won't watch anything we suggest - he'd probably construe it as unsolicited advice or yet another unwarrented interference from those from whom he's already had reason to retreat. We've had to back off and consider what little communication we still do have very carefully.
I'm also wondering whether what we're experiencing is more than hikikomori. Perhaps we inhabit the difficult intersection between hikikomori, autism and severe distress?
Hi Jenny Butterfly. Perhaps autism in neurotypical world = severe distress = hikikomori...
Just to make sure you saw the link to the hikikomori book which I posted above, here it is again, in case it can be of any help and if you dont know it already - sounds like it's written from the perspective of how to help/support as a carer/parent rather than as a hikikomori trying to recover themselves, but I only just found the book and have not read yet -
www.goodreads.com/.../16128831-hikikomori
Yes, to me it has a very similar feel to Luke Beardon's "Autism plus environment equals outcome".
I'll have look at the book but most books on severe autistic burnout (which I believe this to be) have very little on what families can do to help or support, especially if the person is too withdrawn to even talk about it very much.
I'm honestly left wondering how individuals and families can come though this.
Thank you though. I'm really grateful for any additional information and even if I find just one paragraph that helps, it might just be the thing that helps or moves us towards a turning point.