Hikikomori, how can I get my adult son back?

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.

I still wish I knew, unfortunately.  We have a kind of stability here in our "hermitage" (as it's become, even before Covid and national lockdowns).

There are some good resources at Aucademy.  Likewise Ausome Training, as I mentioned earlier on in this thread.  But I'm basically trying to pull it all together from a number of sources and then, beyond that, using it all to support someone who has basically shut down. 

Much of what I'm looking at revolves around chronic burnout (in which case Kieran Rose plus the work of Amy Pearson, Jodie Smitten and Dora Raymaker are helpful), situational mutism (Aucademy's Youtube channel is the most helpful on this topic, I find) and catatonia (for which I only have Amitta Shah's which, for me at least, makes it difficult to differentiate much of what is described from burnout).

I still believe there's hope, especially as our understanding grows, but what I'm not seeing is robust advice and guidance for parents to adults, all living under the same roof and finding it very hard to cope, especially as the years go by.    

Hello, I too am desperately in need of help for this same issue with my son.  Does anyone have any pointers to specialist counsellors who understand this condition and can help me navigate this?  Any stories of hope?

It's enormously difficult and we still haven't moved on from this.  I am circling around the subjects of burnout, shutdown, autistic catatonia and withdrawal but not really getting any answers.  The best information I've found comes from Kieran Rose, The Autistic Advocate, Kristy Forbes and Ausome Training, but even then we are struggling. 

I would like to enlist more help for myself in the way of carer's support or therapy but, of course, I would have to be very guarded in my approach to any services because there's a risk that any professional will instantly refer us on for a mental health assessment and force us back into the hands of the very NHS MH services which let us down, damaged our family relationships and clearly had absolutely no autism training.  

What we need from the NAS is clear advice and guidance for families and carers in this situation because, yes, it's quite common and we're just left on our own to try to cope.   

Dear Jenny Butterfly

I happened across your thread whilst looking to find help for my son, who is also living in his room, very like you describe. I see that your posts are two years old, so maybe you won't see this message. How are things now? I think there are a lot of us in the same situation. I don't know where to turn for help really. Anyway, I know it's a really difficult thing to be going through, I am finding it really hard, so I am sending you a hug and just to say, you are not alone.

Kate

If we want to know if we are on the right vibration to attract to us that very thing, we need only look at our lives. Does it reflect that back to us? If not, then what is it reflecting?

We don't have to think of an illness or disease to get one, but if our thoughts and feelings are at dis-ease then they will have their physical outcome in one way or another. We cannot escape the law of cause and effect. Well we can, but that's a different story.

But you've got a good approach and I agree, i doubt that MAIN are geared up for more in depth work, but I think you'll come to it when you're ready to. And I agree, if the rest of you are feeling better, it would feed into the overall family dynamic and will definitely help your son, in some way. 

I think you're doing tremendously well. I struggled with bringing up one child and left as soon as he hit 18! Although I have to say, that structure of being a parent, certainly kept me in some kind of check and I had to learn how to live again, from scratch, once I was  by myself. It's been an interesting 12 years, but I've found my feet now, so I can now take baby steps to get me where I am going.

Thanks BlueRay.  More to reflect on.  It does feel very much as though things are happening to me, irrespective of my personal thoughts and beliefs.  That's not to say that there won't be some unhelpful beliefs or values in there, but just that I could never, in my wildest imaginings, have dreamt up a polycystic liver that is now at least 5 times its natural size or some of the more extreme issues with my sons.  I was actually envisaging positive family times and good health (plus genuinely felt I was on the right "vibrational level" to align with this).  So I don't know what happened.  

I did read some of Bruce Lipton's work a while ago but could find no examples relating to genetic diseases.  It made me wonder how far this could go.  Huntington's, cystic fibrosis, my own polycystic liver and kidney disease?  In my chi kung and spiritualist groups the thought was that I was expecting too much. My rigid thinking reply was then, of course, "How much would it be appropriate to expect?"

I'll be getting some 1:1 work with MAIN so, under the health and wellbeing section, it'd probably be good to zoom in on my core beliefs.  My older son is actually asking for help so, depending on how it goes, he might also approach MAIN for support, which I'll encourage.  

Not much chance of our younger son reaching out but if we were feeling better this would feed into the overall family dynamic and possibly help him too.

Overall though, I'm not sure where all of this has come from.  I would really have to drill down into my subconscious to discover where this all starts and that could open up a can of worms and another lengthy journey.  I think I'd have to look elsewhere than MAIN to support me through that as I don't think they're geared up for depth work.  

Jenny Butterfly said:

Perhaps, once I've come through the nightmare, I will seem slightly saccharine myself. 

That made me smile :) Do you want to be slightly saccharine though? I'd rather be fully sweet :-)

https://youtu.be/kWIagHUqD8A

https://youtu.be/2glUblzp2rA these are just little clips. I don't know if you follow  Bruce Lipton but if you don't there's loads of his stuff on youtube. It doesn't just apply to the neurotyipcal brain, it applies to all brains.

We all need help with understanding our diagnosis, due to the nature of autism itself and what you are experiencing now, with your family, comes directly under the heading of health and wellbeing. Even if you simply have a person to sit and listen to you, to hear you, because they understand autism so they understand you, is a huge huge benefit. And if you had negotiated all of those things successfully, you wouldn't be here now, you'd be off living the life of your dreams. 

Who else in your family is asking for help? And of course you think the best way they can help you is if they help you with your sons, because that's how we are, we are rigid thinkers. Can you honestly say, without any shadow of a doubt, that you know exactly what it is you and all of your family need right now? We need help to step out of our rigid thinking patterns. That doesn't mean we might necessarily change our minds or whatever,  but we need to see different perspectives so we can make informed choices.

It is the subconscious aspect of our minds that we are dealing with, it is there that change occurs. Everything in your life is a reflection of your inner beliefs and thoughts. For example, maybe you think that things happen to you, that you live in a world that has power to do things to you, that we live in a chaotic world? Who knows? I have exercises I do with clients that get to their inner beliefs. It's not difficult, you just need tools. Maybe you have a belief that you are responsible for your children's happiness and wellbeing? If you have that belief, you're going to have a hard time in life.