Hikikomori, how can I get my adult son back?

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...

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 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 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