Hikikomori, how can I get my adult son back?

I think it's very hard to tell.  At age 16 he was running along with no stabilisers, having achieved good grades at GCSE, seeing his friends regularly and starting on his A levels.  I didn't forsee any problems and he was forecast to get great results. 

Then he became increasingly aloof, first from us (which at the time we thought to he a normal developmental stage), but then from his friends too, until they got rebuffed so many times they stopped calling.  Then an almost total breakdown (involving crisis and early intervention teams) and an eventual confession that he'd always felt different inside and never felt he really belonged with his "friends" anyway.  This was when he talked to us and to the crisis team but even those days are long gone now.  

He's been retreating ever since and I'm honestly not sure what I could safely remove (if perhaps I'm enabling all of this).  He does his own shopping and cooking, is funded by benefits and lives extremely frugally.  We provide home comforts and the internet. 

In the past, talking about him studying or living independently was, I think, perceived as quite threatening.  Plus, also in the past, he's actually slept rough and might choose to do so again, if he felt pressured to work or study and living with us were somehow conditional upon any of this.  He's quite vulnerable and reactive, so I'm unsure what we could safely do.  Safety is an issue not just because of the rough sleeping but also the way he interprets others (either as extremely positive or scarily negative) and how he responds to stress (which in the past has involved extreme diets such as one involving only eating a watermelon each day).

For now, and to open things up, I'd really just like him to talk to us and share some leisure time.  A seemingly small step which eludes us.  It feels as though it is painful to him - he runs out of rooms as we come in and minimises any conversation.  It's not just a lack of eye contact, he tries to be in a different room or to speak through a door.  Our relationship has disappeared.  

Thinking about it, there seems to be lots that would come under category 1, but it remains a mystery to me how we got into this category from a position of not being in any of these categories at all.  Autistic burnout?  Fear of adulting?  A trauma response?  I can't tell but it was all certainly enough for him to be in the ESA support group. Basically my gut instinct is that if we didn't support him, he'd be homeless and wandering about in a filthy state.  

I know these things are difficult.  But at the moment your son is living akin to cycling with training wheels.  I suspect the key question you need to ask yourself if:

* If I took the training wheels off, would he be completely unable to cycle because he is just not capable of cycling?

* If I took the training wheels off, he'd probably fall a few times, but then get the hang of things,

* He's not progressing beyond training wheels because he is in a situation where there's no incentive to loose the training wheels.  I don't know how he would cope without training wheels.

If it's either of the latter two, then if you want to see forward progress you need to decide how to remove the training wheels...

Yes, change is the one thing we can be sure of.  I'm just slightly dismayed that I was telling myself this 7 years ago and since then things have simply become more entrenched.  

Time lost and opportunities missed - yes and yes.  I can cope with this for my own sake.  It almost feels as though there is a certain rightness and also relief at finally gaining this understanding, even at 55.

But I could probably have helped my sons much much more if I'd understood we were autistic and this gives me major regrets.  This is particularly because it all seems so obvious now.  I have the right lens through which to look at things and can now see quite plainly the path of autism in my family.  Uncles, my dad, myself, my sons.   

It's all reinforced by our older son's angry reaction too.  He is utterly mystified as to why we couldn't see something so obvious and failed, time and time again, to get him a diagnosis and proper support.  We were simply understanding and offered to help as specific issues emerged but had no idea of what he was really going through internally and the enormatity of the impact on his life.  No "unifying theory".  He sees our younger son's situation as the obvious and logical consequence of our apparent blindness to problems and the connection between them.  "What did we expect?" he wonders.        

So there's a lot of disruption and also, in our case, damage to come to terms with and also to heal from. 

Is there anything, i wonder, which sheds more light on the family-wide impact of a diagnosis?  It all seems to be very individual, in spite of what to my mind seems to be a strong genetic component.  I feel ike a red warning light suddenly going on when things have been allowed to degenerate into an absolutely critical state.  I don't think my sister or mother fully  understand what I mean when i refer to this but I'm sort of saying, "This feels really momentous.  This is about our family as a whole.  This almost rewrites much of what we've been through as a family and casts it in a very different perspective.  It's not just about my son or myself.  This is big."    

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

In terms of support for myself, I'll be honest, what's on offer confuses me.  Services look at me as an individual and, now that I've been diagnosed (which took a very long time), I've been referred to Durham MAIN, who offer support over key areas, those being:

• Understanding your diagnosis
• Health and wellbeing
• Independent living
• Accessing the community and socialising
• Employment and volunteering

 I'm 56, though, and have negotiated all of these things for myself.  Well, i may well still be processing my diagnosis and have more understanding and awareness to gain, but that might take a while and probably won't be related to additional information from them.  I have enough books on the subject and have been milling around online for long enough, i think, whilst awaiting diagnosis.  My health is shot due to a progressive genetic liver and kidney disease, but I'm used to self managing, pacing myself and working with what I have.  Independent living, accessing stuff and employment and volunteering, I'm OK with all of those.  I've already done it over the past 3 - 4 decades.  They're basically offering what I needed when i was 18. 

What I need help with is parenting adult sons who are also autistic, improving our family dynamics, helping them to help themselves, accessing benefits on someone else's behalf and preserving our family finances, understanding the family/inter-generational aspects of autism plus getting psychological support for this ongoing process.  So I'm sort of pushing them to provide something more tailored to our needs as a family rather than mine as an individual (which is what they've been commissioned to do by the local CCG).  Or signpost me elsewhere if there's no flexibility.  

I can sort of feel a little bit of my arrogance kicking in as I say all of this, mind, and perhaps there is some rigidity in my thinking here.  It feels like a mismatch though, because I generally think that the best way they can help me is to help me to help my sons.           

I'm very keen on the concept of neuroplasticity and the science around it, but wondering about the specifics I can bring into our situation.  I probably felt on surer ground with all of this a few years ago though.  On the surface nothing which has happened since 2012 seems to reflect my inner beliefs and hopes, barring those subconscious aspects which it's difficult to access.  Prior to that I'd retrained in a career more in keeping with my nature, realigned my life with what I felt was really important  and was looking forward to supporting my sons in  their further education and beyond.  None of it's taken off though.  And the blocks seem to have come from external factors plus our (now seemingly astounding) ignorance of our autism.  

Are there any books or other resources on autism and neuroplasticity?   

Hi Jenny Butterfly I don't think you have let down your sons at all. Like many of us you did what you could with the information you had at the time. Things can still change, and I am sure they will - in fact change seems to be the one predictable constant in life.

Being diagnosed autistic at the age of 58 initially made me reflect on time lost and opportunities missed. I felt great sadness for my adult children too as their childhoods were terribly disrupted. Try and keep hope alive if you can. I know it is terribly hard. 

If Temple’s mother seems slightly saccharine, she deserves it, after years of what must have felt like a total nightmare to her, when Temple was younger. She may have had a diagnosis but there was far less awareness and understanding of autism back then ~ she was lucky to not have been put in an institution. 

I’ve been studying brain plasticity for years. There is no doubt whatsoever amongst scientists etc that we shape our brains and our lives, through our thoughts and beliefs and to find out what our inner most thoughts and beliefs are, we need only look around at our lives, the people in it and the situations etc ~ they are all reflecting our inner beliefs back to us ~ they can’t not, that’s simply how the universe works. If we don’t like what we see on the outside, we need only change our inside, our inner thoughts and deeply held beliefs, and our outsides change to mirror or reflect our new beliefs and thoughts. 

You haven’t let your sons down. I’m sure you have always done the best you can with the knowledge, awareness and experiences etc that you’ve had. To say you’ve let your son’s down is typical self obsessed autistic thinking, or in AA (Alcoholics Anonymous) they would say it’s the height of arrogance. 

I thank god I wasn’t diagnosed at a younger age. If I had been diagnosed as a kid, I would no doubt have ended up at some special school, or worse, locked away in some institution. And had I been diagnosed as a young person, I would have rejected it as I wouldn’t have been able to accept it at that age. My diagnosis came at a perfect time for me. 

Are you getting any specialist autism support for yourself? 

Thanks BlueRay.  I like the concept of neuroplasticity, of us being shaped by our experiences, open-endedly, with no fixed schedule because we're all so individual.  This gives me hope, plus also highlights the need for flexibility.  

I still feel our position is rather more entrenched though.  We can allow for recuperation time, healing and almost a sanctuary here at home.  But now that it's been years I'm really worried that, as and when change does take place, there will be an enormous amount of ground to cover and our son might well feel that a lot of years of his life have basically gone missing.  He's 24 and hasn't engaged with anything outside the home since he was 17 (apart from some rather sorry experiences with local mental health services).  So it's no longer just "a couple of years", even though we sought help (to no avail due to non engagement) and continue to do what we can to keep things low stress, maintain a cosy home and to build trust and convey love.

I really feel as though we've been bounced into an alternate universe here, in which we've really lost our bearings.  We might have felt differently if he (and we!) had been diagnosed at a younger age like Temple and had time to bring in appropriate support and be aware of the challenges.  Instead, due to lack of knowledge of autism being in our family,  things were left to run to the point of breakdown and total retreat. 

Even then our son only has an informal diagnosis of Asperger's given by the consultant discharging him from early intervention at the age of around 22.  He refused to see any more professionals so hasn't had a full assessment so I decided to have my own assessment, feeling strongly that this was a familial thing (if I hadn't been autistic myself I might have spotted certain differences instead of thinking, well, he takes after me any development was typical!).  Now my older son has been diagnosed too (age 26) and I'm thinking that there's a lot of ground to make up.  

Overall, due to lack of self knowledge and awareness of the nature of our own problems, we've let our sons down very badly.  On that basis I think we have some lost time to make up for and we're now starting from the position of total withdrawal in one son and some very serious mental health issues in the other.

I'm aghast really.  It seems so extreme and almost beyond belief.  Against that background, Temple's mother seems to have an unreal, slightly saccharine quality, whereas we live in what often feels like a total nightmare.  :(

Jenny Butterfly - I just listened to this interview, after watching the Temple Grandin movie, and something her mother said in the interview made me think of you and your son. She said that when Temple entered high school, she experienced of course, a major change, and it took her a couple of years to go through it. She said it was the headmaster at the school who recognized this need and he encouraged Temple and her mother, to simply allow Temple to process and come to terms with this change, before she got engaged in school work.

I thought you might find it interesting - it made me think that, that is maybe what your son and many of us have done, during our periods of isolation or whatever.

https://youtu.be/ULc1c206JM4

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.  :(

Many thanks.  I am struggling to cope with this situation plus, of course, it also impacts on the whole family dynamic.  My older son, for example, feels he's lost his brother.

What is happening to you, with regards to your son’s behaviour triggering past hurts etc, is exactly what is happening to people on a daily basis, only most people, are completely unaware of what is happening. You have a major head start because of your awareness, so although you don’t realise it, you’re way ahead of the game. 

I’m on my way out just now and when I get back, I’ve got course work I need to complete  but if I get chance over the next few days, I’ll break down what you have said above, I’ll write it in a private message, and I’ll show you different ways of shifting your mindset, based only on what you have said already. I’ll be able to make it all look a lot clearer and give you some pointers of how you can begin to shift your mindset, because you already have a good grip on what’s happening, you probably just haven’t met anybody body who can help you to clear it. Most psychologists etc can only take you to a certain level of awareness, which it seems, you may have already passed, and that’s why the therapists don’t know how to help you take it further. It is an unowned problem, and you just need to learn the tools to be able to effectively own the problems, rip them up, and move on with a new fresh consciousness which is no longer infiltrated by past events etc. 

Thanks BlueRay.  Yes, he comes out of his room to grab food and take it back to his room, shops for food plus does his clothes washing (but puts the clothes back on a dirty body).  

It's been a very long time though and I doubt my ability to shift my mindset, in spite of years of meditation, CBT training, tai chi and the like.  I managed it for the first couple of years but now I'm seeing him more like an uncle of mine, who had a breakdown aged17 and never really recovered. 

Of course, we have more information and awareness now, but I've always been an anxious person and this is feeding into my anxiety.  

Plus his teeth are rotting, just like my dad's did.  So things like this are tapping in to some longstanding issues I have with my family, some of them linked to a strong sense of shame and exclusion plus some bullying in the past.  Basically nobody outside the family could understand how someone could be so mucky and saw it as a deficit on our part too, as if there was something we'd failed to try.  

Not all of this relates directly to my son, of course, but it's hard to unravel.  And if I could see the shoots of new growth I would feel instantly relieved.  Trouble is, it's mostly what therapists call an "unowned problem".

I can certainly understand why you would find it upsetting. And any advice or whatever, coming from anybody, is one of those things where it is easy to say, but not so easy to do when you're in the situation. So I do respect that, and as a mother, my instinct is to feel for you, and your son.

However, because there is no way of controlling him to do more, you are left with two choices. One is to worry about what could happen, which is always the worst case scenario, or you can choose to work on being able to accept that you don't know what will happen in the future but that you will hold an image of him with it all working out and you will do your best to look after you and be the best you can be so that when his time comes when he's ready to make some changes, you're there waiting for him, being the best that you can be.

It sounds hard, but it's actually a mindset shift, which is something that you at least  do have control over. 

Autism is not called a mystery for nothing. There are some things about autism that simply cannot be explained, beyond it being autism. But there are many things about it that we do know and that we can work on. For example, ruminating over this is an obsessive thought pattern, that can be interrupted and changed. Not through force, but through acceptance of reality. For example, at this present moment in time, your son is well. In that he is not ill or in danger and it is his life, and how does he or you benefit from you worrying over what 'might' happen? You can work on this. Break it down however you need to and it will be of more benefit to both you and your son than worrying will.

I would be more inclined to think he will come out of this one day, like many others have. Nobody really knows what makes a person change sometimes, but it's more likely that he will, rather than won't. At least he comes out of his room, the lad I know didn't. 

Yes, I have heard of a couple of cases that have followed this pattern. 

Our son's CPN (while he was under the early intervention team) kept referring to a case where a young man had been extremely reclusive for a number of years, not engaging with services or anything much, but then suddenly changed tack, started working in a relative's pub and then took it from there.  

It's impossible to say what made the difference, though.  Maybe an inner process which eventually reached the point where changes became possible or necessary.  

I can relate to some of it all too easily.  At the same age I found life immensely difficult and kept retreating whenever I got the chance.  It was nowhere near as extreme as this though.

And it's been years.  I have fears that, irrespective of the support and understanding given, this will go on open endedly.  And we're all getting older.  

Our son can't even stand tone in the same room as us.  If i walk into the kitchen through one door, he rushes out from the other.  Generally leaving a trail of body odour.  I find it deeply upsetting.

All I can say is this describes my sister’s nephew. Only he never had a formal diagnosis because there’s no way he would have engaged with that. He stopped going to school at a relatively young age and stayed in his room for years. His food was left outside his bedroom door for him. 

Then one year, a few years ago now, he turned up to our big family dinner. He had loads to eat, engaged with us all and had a good day. He has a job, which started off temporary, in some kind of warehouse, but he did so well, they gave him a permanent job, which is quite unusual and I think he might have been promoted by now. But either way, he’s still living at home, he still enjoys a relatively secluded life (a bit like me), but he’s happy and he’s a joy to be around. 

I have no idea what happened. I think he maybe just got fed up of being in his room and it was time to do something about it. He still hasn’t had a diagnosis and the family certainly don’t push it but it doesn’t seem necessary. The family don’t need it and if he doesn’t, then that’s good by everyone. 

So maybe your son just needs time. I know I could certainly have done with more time in my room, when I was younger, even though I had a lot. I am just now coming out of over two years of solitary self confinement. This time I was 100% committed to not coming out of it until I was ready. I didn’t care if they didn’t give me benefits money or whatever, I wasn’t going to make a move this time, until I was ready. Maybe this time now, will make up for him doing it in years to come? I don’t know, I guess nobody does, but I don’t know your son, so I can’t say. But I do know that my periods of isolation when I was younger, were never long enough. It can take us an awful long time, compared to most people, to process and understand stuff and often, the only way we can do that, is by ourselves. 

At several times throughout my period of isolation, I have wondered if I would ever come out of it, but although I’m terrified, I’m coming out of it but only because I was moved from within and not from any pressures outside of myself. Any attempt to get me out made me shrink back even further. I’m now getting specialist one to one autism support and it’s going really well. But I don’t think I would have took to this help when I was younger, like I am now. So I don’t know, maybe there’s a right time for everything? I know that when I’m by myself, in my room, not having to wash, dress or eat etc, I’m at my happiest. I know I can’t stay there forever, but I needed to make a move when I was ready, this time and not because I should or could.