Hikikomori, how can I get my adult son back?

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/

Re home education, he started school aged 4 (August birthday) and had two years at school.  The perception of home education is of an isolated child at home with mum, it couldn't be further from the truth, we did school type study in the morning and then spent every afternoon in the company of other families going on group trips, doing group activities, he had a solid friendship group as well as retaining a school friend.  He did say that if he'd stayed at school he doesn't think he'd still be alive now, I think home education was the right thing for him.  It took some sacrifice financially and for my career. 

It's just a relief to find this thread and the hikikomori Parents Facebook group so that I don't feel so alone with this.  

Hi, thank you for your reply.  I've always thought he was on the spectrum and coincidently I used to work in a residential school for children with autism before having my own children.  There are relatives on both sides that although undiagnosed are in my opinion on the spectrum.  My son has never been diagnosed, mostly because he was really struggling at school and there was no support or understanding coming from the school, and when his distress was becoming too much we took both him and his sister out of school to home educate. We didn't have enough money to seek a private diagnosis, which is the only option once you're out of the school system. It cost us over £1,000 just to get his dyslexia/dyspraxia/dysgraphia diagnosed which was when his IQ was assessed.  He thrived being home educated up until age 12-13 when we had a traumatic incident with his sister, from that point on he started to withdraw, very slowly, we weren't too worried at that point. But just before he was due to take his GCSEs he refused point blank to attend any of his classes - he attended small group teacher lead tuition with his home educated friends.  He didnt take his exams.  Then aged 17 he had a very minor accident on his 50cc motorbike, he was unhurt, bike had a few scratches but that was it, he then pretty much stopped going out at all.  He still had one friend at this point as he'd gradually been pulling away from his numerous friendships.  I think the last time he saw his friend was the winter prior to covid.  He doesn't talk to anyone on line or on his phone.  

He had to talk to a doctor at the beginning of this year because he had an infection.  It took him about four days to get to a point where he was so scared and in pain that he relented.  I'd already briefed the doctor, so by the time I managed to get my son on the phone all he did was respond with yes, no, thank you to the doctor.  

He used to love being outdoors, we did a lot of walking and camping, he had a friend with some woodland and he did all the boy stuff, running about with sticks, climbing trees etc.  He used to play ice hockey and do archery.  The only sensory problems he had were with regards to clothing and food.  He's always been fairly quiet, not outgoing but he went to scouts and Woodcraft Folk and went away on camps regularly.  I think there is a very big element of anxiety and lack of confidence in him, but he flat out refuses to talk about it to me or anyone.  The doctor also tried to offer help for his problems but was told no thank you.  We can't force him.  All of our suggestions are met with "that won't work" from him, that's when he sticks around long enough, mostly he can't seem to spend more than a minute in our company without having to leave the room and go back to his room.  

It's devastating to us and we feel helpless and hopeless.  Thank goodness his sister is doing very well and is living independently and working in an amazing job, she's happy, which is all any parent wants, we just wish our son could be happy too and living beyond the walls of his room.  He's kind and sensitive, has a great sense of humour when he can allow himself to spend more than a minute with us.  But he also gets quietly irritated with us, especially if we are larking about, doing silly voices or singing and dancing, it's like he's embarrassed.  He gets quietly angry if there's noise such as hoovering or builders working on houses in our road before he's got up.  We had the outside of our house decorated earlier this year and it was a terrible trial for him.  He wouldn't open his window for painting.  He never opens his window even though his room gets stale and stuffy.  His hair is very long, he won't let me cut it but he has shaved his head bald in the past when he's got fed up with it.  He always hated going to the hairdresser.  Basically he hated doing anything that meant having a conversation with an adult he didn't know.  

I've had a little bit of support for myself through Action for Carers but pretty much feel like we are on our own.  I feel trapped by his needs, I work from home so that he's not alone.  We just don't know what to do, unless he wants help our hands are tied.

Hello there.  You don't say whether he or anyone else in your family is autistic but this does sound very similar to our own situation.  I'm afraid that I still haven't found the guidance and information I was looking for and, like yourself, it felt like a step forward when I found out about hikikomori.  Whenever I read about hikikomori, though, I wonder whether the term has originated in Japan to describe what may well be part of autistic experience and a way of retreating from the world and remaining safe after trauma or setbacks.  From what I can glean, the chances of this arising are highest during times of transition and stress, particularly for those on the cusp of adulthood who find themselves ill prepared for the demands of further education or the workplace.  

Your son is clever and intelligent plus is still taking care of his personal hygiene, which are definite positives.  However, it sounds as though he might also have a "spikey profile" (something which can be more pronounced in autistic people) and might have found it difficult to cope with life in other ways.  If he's unwilling or unable to discuss those difficulties, perhaps something can be pieced together by considering what was happening in his life when he first started to withdraw.  Or thinking about those scanarios that he finds most uncomfortable or distressing.  Is there any reason, for example, why he might not want to have his grandparents round to give him some company, or might there be sensory sensitivities that mean he can't tolerate bright sunshine?  My own son always draws the curtains in any room he's in plus I've heard of lots of autistic people who, irrespective of the weather, need to wear sunglasses to stay comfortable out of doors.  Reverse sleeping in order to time waking hours with when it's quieter or darker can be very common too as otherwise it becomes easier to feel overwhelmed or bombarded.     

I think you're doing the right thing in continuing to invite him to join you and keeping a stable home environment for him.  I can only suggest joining more autistic-led communities to learn more - Autism Inclusivity is a good Facebook group, in addition to the autistic advocates and trainers I mentioned earlier on in this thread. 

I really wish I had more to share on this subject and rest assured I will report back as and when I learn anything that might help - I would probably want to shout it from the rooftops, to be honest.  I'm always really sorry to hear that others are going through this too, but I'm remaining hopeful and have found that in providing a very calm home and making ourselves available as and when our son might want to talk things have improved a little.  It's not enough, I'm painfully aware of that, but I'm hoping that over time this can be built upon.  

 

 

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 

Hi all on this thread.  After searching for some years I finally came across the term hikikomori today and my internet search brought this thread up.  I'm a parent at my wits end.  My 22 year old son started cutting himself off and has now only left the house 6 times in the past 6 years, four of which were just brief rides in his dads car.  He goes to sleep between 2am-4am and gets up between 12 - 4pm.  He mostly stays in his room, only coming out to use the bathroom or to get food.  I only ever take food to him if we have guests because he'd rather starve than have to interact with other people and that includes his grandparents.  He doesn't use social media and only switches his phone on if he wants to ask me when I will be home if I go out.  He doesn't respond to any of my text messages.  He sometimes plays his guitar but is mostly spending the majority of his time online.  He won't talk to us about his problems, he won't engage with outside help from gp/counsellor etc, he won't respond to his last remaining friend, who's pretty much given up on trying now.  He refuses to open a bank account, doesn't claim benefits, never asks for money or anything at all.  Finds receiving gifts stressful.  I'm terrified for his future, I'm depressed, we can't go on holiday as he won't be left alone and won't come with us or agree to having my parents stay to keep him company.  I just don't know how to help him.  He does at least shower and wash his hair every other day or so and brush his teeth daily.  He will strip his bed and remake it when I ask him to.  He's a quiet, ghostly benign presence. He's intelligent, scored 138 on an IQ test when he was 11.  His life is rapidly passing by spent in a darkened room with curtains permanently closed and only going outside into the garden for the briefest of moments.  We always ask him to come out with us to walk the dog, he always refuses.  He badly needs new glasses but will not attend an appointment or allow a home visit.  Myself and my husband feel very alone. 

It's unfortunate that the crisis teams were unable to help but I am not surprised as their approach didn't help me and I've heard that from others with autism as well. They aren't very autism friendly and focus more on mental health and don't really take autism into account. I can understand how this could have made your son want to hide away into the safety of his room, his little world where nothing can touch or hurt him. Are you coping ok? I imagine it must be hard for you being his mum. Just remember you're doing a great job and if he decides to talk to you about anything then you'll be there for him.

I imagine as well that going through all that and having different meds upsetting him that will have an effect that takes time to recover from. He will recover of course but generally people with autism take time to do this and they do it in their own way. But I do agree that these services often do make people go further into their shells and once in the shell it's hard to come out again. But don't worry he will. He's been through so much, you all have, and now he just needs to process it. At some point he'll feel comfortable to do different things until then I guess it's just a bit of a waiting game.

I can see why he's doing that. His room is his safe space. Video games are another amazing world where he can go and escape. I used to escape in books. The main thing is at least he finds happiness and comfort in this and you know he's ok :) 

I like hearing and getting others experiences it can be such a big help and support. I hope I've been able to help you just a little with this.

That's ok. Just a part of life and its many experiences. Maybe I'll get another chance one day. Life is a very long journey, brings many scars with it but it's a mostly enjoyable adventure I think.

Yes, I agree.  Crisis teams and early intervention just seemed to have a one-size-fits-all approach and that certainly wasn't adapted to be autism-friendly.  Not that they even thought about the possibility of us being autistic.  That knowledge came later. 

I think that having these teams coming round every week for ages, trying one med after another and upping the dose of each, took its toll on our son and also our family and, generally speaking, I think the approach can drive a person further into their shell.  They may be well intentioned and the stance is very much one of helping and supporting, but sometimes the effect is the opposite!  And the individual. especially if they're quite sensitive, can be on to their "recovery" agenda and get the message that it really isn't safe to tell them much because it requires them playing a game which they know won't help them.  It may work for others but it's not something we'll do again.  

And yes, staying in his room and reducing interactions keeps things as safe as possible.  Likewise reducing interactions to a minimum.  And staying within the predictable and entertaining world of gaming too - a vivid alternative world in which the rules are more explicit and results more consistent.  

It IS actually helpful to hear from others with similar experiences as it gives us more of a feel for what's going on.  And without others' validating such experiences we might not have the courage of our convictions in continuing along this path of least intervention.  

I'm sorry about the very brief experience of parenthood.  Life throws us some very difficult situations sometimes.  We grow and change, yes, but of course the scars remain.      

People change as they get older I find and it sounds like he's been a lot what with crisis and early intervention stepping in. From my own personal experiences I find that services like those actually make things a lot worse and make you avoid people and the outside world more. That's how it was for me, took years for me to finally go out again.

It sounds like staying in his room may be his way of not getting hurt again. Our rooms are usually places of safety where we can be ourselves so it may be that. When I had my breakdown after my dad died I hid in my room all the time for a few years, unable to leave and rarely spoke to my mum at all I was worried I'd say something wrong and didn't want to upset her. I know your situation is different but your son might be thinking the same, he doesn't want to upset you or doesn't know what to say.

I'm sorry I can't really help here. I'm not a mum, I was for three weeks but sadly it wasn't meant to be.

I truly do hope things improve for you and your family.

Absolutely.  The transition into the adult world can be particularly scary and I didn't cope with it very well myself (fluctuating between avoidance, self medicating with alcohol and constantly seeking out new self help approaches to anxiety because, of course, I was also terrified of going to the doctor's so could only consult books about it).

And yes, the pressure to get a job, volunteer, study or even just get out there into the world to any degree can make things worse.  Likewise dropping into the alternative nightmare of negotiating the benefits system, with the need to focus on everything that's wrong and also to engage with the process to some degree. 

And I also agree that shifting the focus onto interests could be very productive, if the person is willing to have that discussion (either 1:1 or via email or phone, depending on what they find easier).

There is an Aucademy facebook group for parents and caregivers I find useful too.  

For now we're:-

- maintaining a cosy, supportive environment here (our safe "hermitage") 

- reducing demands as much as possible

- keeping things low arousal (no excessive noise, attention paid to decor and layout etc)

- keeping very peson-centred.  Remaining available to listen but making no demands for interactions,  then any conversation which is inititiated is very much led my him (i.e. we don't use that as our opportunity to mention all the "issues" that we see are building up).

- meeting the need for a really good internet connection and a range of foods we know will be enjoyed. 

I'm not sure about independence.  We're all inter-dependent to an extent, although some will need much more support in life than others.  So all I'm doing is planning our finances very carefully (estate planning) and revisiting our wills every 5 years.  I'm afraid I've found that if we focus on independence, it alters our mindset so that we slip further towards "authoritarian parent" mode, think more about the jobs market or training and run the risk of feeding all the fears.  It's a balance, though.  We've never rushed to assist with problems that arise which we believe he can resolve himself (and grow in the process), but any push towards independence is very high risk.    

All very difficult.  :(

Yes, it really sounds as though he's autistic but also as though there may well be a great deal of trauma and/or rejection in the background, such that gaming and staying in his room feels much safer.  A reliable, familiar, stress-free zone. 

I wish I could find resources that help with hygiene.  Obviously there's a fair bit out there on sensory sensitivies and adapting things to support (e.g. lowering the lighting in the bathroom, having the shower adjusted so's it's not too forceful, avoidng heavily perfumed products etc etc, always in line with what the person needs and requests) but once this approach has been exhausted, I simply don't know what to do. 

There is also the probability that, the higher stress levels become, the further down the priority list hygiene will be pushed, but if stress levels remain high in spite of everything, it's hard to see a way through.  And, of course, resorting to nudging them about it may well heighten the anxiety.

I can only assume that things are worsened without any acknowledgement or awareness of possible neurodivergence and such a hostile attitude from the father.  :(  

Hi, I’ve been watching a very similar problem with one of my wife's friends, she lives a few doors from us. Her son is now 21 and hasn’t really been out of his bedroom since he was 16. He doesn’t dress and rarely washes, his mother changes his bed sheets as he won’t and actually has sores. All he will do is play online games. He did well at school but since then nothing. He would come to us sometimes after school for dinner, I noticed that he was different, if any food items touched he would sit at the table crying, he has food intolerances and only eats a few things, mainly pizza. He speaks in a very monotone voice and has no friends. Obviously I’m not able to diagnose anyone but I really see that he’s autistic. I’ve never said anything as I know his father would come round with his fists for even suggesting such a thing. It’s such a shame his skin is terrible as he gets no sun or vitamins. The sad thing is that I don’t see things ever changing.

That sounds like an extremely difficult situation. Your son may be very afraid of being forced into things he doesn't want to do. The thought of jobs, classes, relationships, etc will likely seem completely terrifying and overwhelming. His experiences in the past may have been negative, which has led him to become more and more withdrawn from the world.

I know I am quite reclusive and I see that as my choice as an adult. However I do live independently and at some point your son is going to have to do that as well.

Does your son have any special or intense interests that you know of? Does he have access to a computer or games console in his room? Do you know if he communicates with the outside world in any way?

I'm wondering if he is part of some online virtual community. That could seem like his world and he doesn't feel the need to inhabit your world, except for basic needs such as food.

Maybe trying to understand what interests him in life could open up some better communication with him. Just talk about his interests, in writing if that is easier for him than verbally. 

At this stage he needs to be confident that you are not trying to get him to get a job, volunteer, make friends or any of the things he fears. It sounds as if he is a long way from achieving any of those currently. Merely mentioning any of them could be so overwhelming for him that he just shuts down and withdraws further from the world.

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.    

I first heard of this on BBC news, where in Japan they have "rent a sister", they don't have any special skills or qualifications, they are just experienced in dealing with people in this state.

www.bbc.co.uk/.../rent-a-sister-coaxing-japan-s-hikikomori-out-of-their-rooms

Has anyone else coped with this kind of situation?

To me it feels as though, once services have been tried and fallen short, it becomes easy to slip into a pattern of just living around the reclusive person, even though that could, in many ways, be seen as a form of enabling.

I have the thought that, in the end, the person's own vital force or self actualising tendency would win through.  But if not then I don't know that there's anything on which we can rely.  

Meanwhile, other young people on the family who are getting on with their lives just serve as a reminder of what our son is missing out on.  :(