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 Alone, withdrawn, spending 99% of his time in his room, uncommunicative, avoidant (of everything, no courses, jobs, classes, volunteering, relationships...), mucky and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?
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.
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.
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.
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/
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.