Hikikomori, how can I get my adult son back?

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I believe this to be) have very little on what families can do to help or support, especially if the person is too withdrawn to even talk about it very much.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.  

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

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.

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?

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? 

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. 

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.

I'd better get googling!  Thank you Ax

I went through the NHS, but it took around 20 months and I think that the position might be worse now because there'll no doubt be a backlog after Covid.  My GP was very happy to refer me but I did give her a brief outline of why I thought I needed the assessment and I know others have experienced some difficulties in getting referred.  My GP is quite young and seemed to have more understanding of the recent changes in how people think about autism. 

For our older son we went privately at the Retreat in York.  They also do NHS work but when we checked the wait for this was at least 18 months (that was 2019), whereas privately they could offer us an appointment for early the following week.  So yes, it went against my principles and it was pricey, but we needed to get him a diagnosis and get extra support in to allow him to complete his degree.  And, given the magnitude of his issues, we were desperate.  

The private service was also better too.  Not so much the assessment, which was very similar, but the detailed report (I just got a brief letter!) and suggestions for post diagnostic support.    

And, as I've probably mentioned before round here, I was eventually diagnosed when I was 55.  I really, really needed that identification much earlier on in life, but still it has been very worthwhile and a case of better late than never. 

Thank you for taking so much time to give detailed replies, I really appreciate it.  I think I really do need to look at myself in the first instance.  Autism and ADHD have crossed my mind over the years, but I brush it aside thinking that I'm reading too much into my own problems.  I'm 57, so it would be a very late diagnosis. Is it something that is available to adults through the NHS or do I need to go the private route? 

Yes, I've found it to be quite revelatory and I'm now looking at everything through a different lens.  I also find that information, resources and therapy tend to be focussed on the individual, from assessment onwards, whereas for me it was always more of a family thing.  Yes, the individual process is essential and really useful, but I need all of this to radiate out and enable me to better understand and support our family.  I'm also hoping that, over time, it will alter our family dynamics in more positive ways plus feed into the whole process for other family members, wherever they might be in that process (yes, even if I believe them to be stuck in the denial phase).  It's also altered the ways in which I make sense of many of our shared experiences. 

One question I often pose to myself is, "What did I make it mean?"  Because I actually misinterpreted loads of stuff whilst looking at it through an neurotypical lens, firmly believing that I was also neurotypical and that my issues could be overcome if I just applied the standard NT solutions more rigorously.  I think this added to my own trauma and sadly I passed this on.  

Overall, and I would still say that we're in the early stages of this especially considering how long we've been struggling and unidentified as autistic (and possibly ADHD), I'm thinking that we'll be more able to pull together and begin to share more, instead of masking or (in my own case) applying NT standards that we either can't meet or which place too much stress on us if we try - I think I got very good at pretending to be NT, but it wasn't me and the effort of doing so was a major stressor which unfortunately also fed into my parenting.    

That's very interesting, I certainly think if I was assessed and diagnosed it might offer a way in for assessment for my son, who is very anti any intervention of any kind.  Perhaps knowing I have gone through the process might help him to be more open to it.  Back when he was 11 and being assessed for dyslexia etc, he was not best pleased and put up some mild resistance but his sister was also being assessed at the same time so he did go along with it. 

Yes.  I think that asking for help with small, easily accompished tasks can be very useful.  They can be safe activities with which he might well be able to build his confidence without any risk of failure or humiliation.  And a safe, loving and accepting place is so important as the background for anything else you do.  

Iamme said:

I think myself and my son share a lot of personality traits.  We are both highly sensitive, even when I try to hide it he picks up on my feelings.  Perhaps I too am on the ASD spectrum...

I'm just thinking that it might be worth exploring this some more.  There's a post circulating on FB at the moment from Ausome Training to the effect that, "Autistic kids come from autistic families" and I've read several books and articles which mention this.  Philip Wylie refer to it a lot in his book, "Very Late Daignosis or Asperger Syndrome" in which he says, "I am grateful to my godfather for showing me the path of ASD in my family.  An important aspect of my healing process was understandng the family genetics behind it".  (NB I'm not keen on the language he uses - ASD and Asperger's - but still found the book useful).

Within my own family I was all too aware of the kinds of problems that seemed to keep cropping up, including those of my late dad back in the 1970s (severe burnout and breakdown, I now think).  And my younger son refused to speak to the autism assessment team.  they basically entered the front door while he legged it out of the back, shouting, "I'm not autistic and I don't want to see them!"   So in order to  find out more about what was going on in our family I looked at my dad's problems, then my son's and started wondering whether I myself could be the "missing link".  So I went back to my GP and the team and basically said, "Assess me!" 

It all took a while but in the end they were very certain of my diagnosis and this has provided a way in for us all.  I found out where I should be looking for information, instead of researching all  kinds of mental health diagnoses and not really getting any where.  Plus one question I ask myself when considering the many other issues within our family is, "Where is that in me?"  Because, of course, our sons each have around 50% of my genes, they've then been parented by me, and there will be intergenerational patterns there.  Plus I suspect I was drawn to my husband because he's neurodivergent too!  

Now some issues are magnified in me and perhaps dialled down in my sons, and vice versa, but it's definitely giving me more of a feel for the nature of many of our shared issues.  And I think this is going to be useful over time.      

Thank you I will take a look.  I don't think there's an instant cure for what's going on with my son,  things like his social anxiety could be addressed with professional input but he flat out refuses to engage with any input at all.  Until he accepts help and wants to change we're stuck in this limbo. We just have to hold a safe and loving space for him at home and try to draw him into things we are doing without being obvious about it.  Very occasionally if I phrase things as "I need your help" it works, but that's very occasionally.  During the extreme heatwave on the hottest day I was outside attaching dust sheets over the downstairs windows to shield them from the sun in an attempt to keep the house temperature down.  I'm not very tall, not very strong and was struggling on a ladder, and he did come out and help me which was pretty amazing as he rarely goes into the garden due to his phobia of insects.  I just feel if we could little by little get him to spend more time out of his room doing stuff with us around the house it might help him to start to feel useful and regain some confidence in his own abilities because he seems to have none.  

I don't know, the FB group was set up in 2021, it's disappointingly quiet to be honest.  I'm sure there must be parents on there with ASD children, as you say, I think it's all connected.  I don't necessarily think Hikikomori is a singular defineable condition, it could simply be called extreme social withdrawal which is a symptom of any number of things from ASD, depression, to trauma etc. I had a look at Kieran Rose, masking and burnout, and actually recognise myself there!  I consume a lot of energy being "performative" in social situations, when I get home I am exhausted but wired and can't wind down to sleep or concentrate on anything and I take days to recover, I feel like it's got worse as I've aged, I'm 57 now and only remember the "perfomative" aspect of socialising and not the mental exhaustion.  I like to socialise but I have to spread stuff out, I'm much more at ease simply on my own either at home or out walking, foraging, sightseeing and going to galleries.  My husband doesn't understand why I would rather do stuff on my own.  I think myself and my son share a lot of personality traits.  We are both highly sensitive, even when I try to hide it he picks up on my feelings.  Perhaps I too am on the ASD spectrum...

This all sounds great and I absolutely agree.  School can be very, very damaging, especially when there's no recognition of many forms of neurodivergence and so no support or accommodations either.  I actually wish we'd done that, in spite of the costs, because we might have been in a better position now.  I keep coming back to the thought that, "when we know better, we do better", so this is where we're putting a lot of our energies.  If you listen to Kieran Rose on home education as compared to mainstream education and the frequent effects on autistic children, you'll probably feel very validated in what might have been quite a tough choice.  Plus, if you've not found them yet, there are many autistic families who are home educating in the Nurture Programme (website below plus there's a FB group too).  

 https://thenurtureprogramme.co.uk/

As with the work of Jodie Smitten, a lot of this is for younger children, but I still find that a lot of the thoughts and principles are relevent to older people too.  

I've not joined the FB group.  Do you know whether many members are autistic?  I'm just finding so much overlap there.  Likewise between being autistic and being a highly sensitive person (HSP), as described by Elaine Aron.   

Iamme said:

All of our suggestions are met with "that won't work" from him,

This response is so familiar to me because it's cropped up an awful lot in our house too.  And I've also have to pave the way by speaking to the GP in advance of any appointments plus make sure their records show that as parents we are now also in the role of carers to our son.  Other than that I've found that, whilst suggesting something in a straighforward way is likely to result in a flat refusal or even opposition, planting ideas in passing, without overemphasising them can be helpful.  I must confess that this has been mainly useful with our older son as our younger son will barely speak to us.  If it were still possible to really talk to him about it, I'd probably just seek to give him space to air his thoughts and concerns as he sees them, without giving any unsolicited advice, and hope that he'd generate his own ideas and suggestions.  I find that with both my sons, anything works better if it comes from them.  

My overall impression is that they might have been forced to mask from a very early age but that this masking became very difficult to maintain as they got older, leading to a kind of identity crisis or breakdown when faced with challenges in the outside world.  Not sure whether this will be relevent to your son, but I think that this can be a very common experience for autistic people.  And personally I'm still trying to separate out myself from my vaious masks quite late in life (diganosed age 55 and now 59).  It can be a lot to unpick.     

I do also keep a notebook and a separate log of how things are going, just so that I can gauge any recurring themes and direct my searching and learning, usually via relevent blogs and webinars.  But even at that our hands are tied too and my aim to simply become better informed so that i'm more equipped to help them should they eventually ask or show an interest in a particular area, even if that's without the language of autism and neurodiversity, which our younger son just doesn't accept.   

In the light of this, we tend to focus on small things that we think might improve family dynamics and relationships, gently and in the longer term.  Anything sudden or unsolicited tend to backfire anyway and we've learnt the hard way not to take any action without agreement and not to act on our strong impulse to keep seeking "help" from services which have already let us down more than once.  I'm not sure about Action for Carers but I do belong to our local carers' group, run by the County Council and have managed to access some counselling and a couple of courses through them.  

From what you've said, it does seem that you've done a lot of great stuff in bringing up your son and supporting him.  He must surely be aware of that and of your ongoing support, which I think must be of some worth to him, even if he doesn't currently express it.  But you've also mentioned a couple of traumatic incidents, plus there may well have been more minor, "micro-traumas" that have had a cumulative effect over the years.  I discovered this to be the case with my own sons and it turned out that there were a lot of things at school that they thought they just had to tolerate and which they never mentioned to us (bullying, feeling excuded and as though they were somehow different and didn't belong).  And these factors, plus masking, have taken their toll.  My feeling is that processing all of this could take some time, although I do feel and increasing sense of urgency as the years go by.  

Being mindful of all of this, we try to model positive interactions with the world and our own self-regulation is important in this.  If I feel myself becoming very emotional, I leave more space because our sons are so sensitive that they can easily pick up on this and interpret it as really negative and creaging a bad atmosphere.  I find it quite hard though.  

I did find Kieran Rose to be very helpful, especially in his explanations of masking and burnout, plus also Kristy Forbes, although the focus is often on younger children.  So it might be worth having a look?  Not the instant action plan that we'd maybe like to hear from conventional "experts", but I suspect, from our own experiences of these "experts", that that might be a good thing.  

Of course, this all assumes that hikikomori either equates to or really overlaps with autism and chronic burnout, but the more I read about it the more I think that this is the case.  

theautisticadvocate.com/