Self neglect

Hi Jenny...

i'm going try try to answer with the caveat  that I'm currently a bit drunk and I haven't read any of the other replies, so take it for what you will.

I go through periods of self destruction and self neglect. I have to remind myself to wash and brush my teeth etc. And I am a perfectly functional amd 'successful' human being. I will only shower when I have to go to work, or when I start feeling uncomfortable or itchy/stinky. I can go for days or weeks without it bothering me personally, because I don't notice. When I finally can smell myself. which is probably too late, I get around to doing something about it.

Only going to work gives me the impulse to not be a stinky mess. I simply don't think about these things and I don't notice, until I notice.

I have a skin condition, made worse by lack of washing and shaving, and even that doesn't always motivate me to keep control of it.  But I become annoyed, irritable etc when it gets out of control. It gets worse when I'm feeling down or unmotivated, which makes me down and more unmotivated.

I can better control and organise these things when I have a better sense of personal interests and motivation, when I can become more than my own interests, when I can externalise myself. It's difficult to explain. But I think it's about finding a spark. an interest and excitement outside of oneself, some kind of external motivation.

This can be quite sporadic, and is not externally motivated. It comes from within, but needs some form of external impetus.

Or some pride in oneself, whatever that might mean.

That probably doesn't help in any way whatsoever. But it's about finding a spark to engage with the external world.

Thanks Exist.  That is interesting and is very much in line with what I'm thinking about motivation and finding the spark inside.  It sounds as though you have much more of these than my son, though, who is unable to work (total "hikikomori" state) and too reclusive even to engage with the DWP.

I think this also highlights what might be the crux of the matter.  The family sees the situation from the outside in, so can look for signs of any nascent interests or motivation and work with those (NB not in any pushy way but simply supporting) but it is the intrinsic motivation which matters and if we don't see any signs then we are clueless. 

It honestly looks as though he's seen a little of the adult world, taken fright and taken flight.  So there's a danger of anything coming from the outside being perceived as pressure or a demand to conform that he's unable to meet.  I don't know how to handle this, moving as we do within a culture which often seems to value a person's working ability above all else - he's a bright lad, he knows what people think and this, I think, makes him want to avoid them even more.  

If the balance could be altered and shift in favour of interests he wanted to pursue, it'd look very different.  As it stands he only seems to have an interest in protecting himself from the world and distracting himself from all the issues by gaming - i.e. negative "away from" activities rather than positive "move towards" interests.   

Ah, interesting.

Motivation can be difficult to find at times. One thing I forgot to mention was scheduling. I don't personally like routine and structure, too restrictive and repetitive, but if I don't have certain things structured I just won't do them.

For example, I brush my teeth as soon as I get up and at about 9:30 at night. If I don't do it at those times I'll simply forget, or I won't be in the mood and I'll get distracted. Similarly, I prefer to shower in the afternoon or between 11:30am - 1:30 pm. If I don't do it then, I won't be in the mood. Of course, this doesn't fit with a regular 9-5.

I have prefered schedules and routines in my mind, but they don't always fit with regular daily/weekly schedules. My time perception is more elastic.

Maybe small/subtle routines could be implemented for some of the simple things so they become second nature and he doesn't have to think about them.

I'm not really into gaming, but I do spend a lot of time consuming edutainment and educational material on Youtube etc.

Is there a possibility for hinting at some online courses, online opportunities etc. eg programming, computer sciences? Really anything that can take an interest and expand it into the real world a little, without having to physically engage with the real world. Broadening his horizons from his computer, with the hope that it might eventually build a desire to explore the world around him more.

I suppose one of the most difficult things is that people cannot be forced to be motivated or interested.

Another possibility if the outside world and people are too much to cope with is to try to go for quiet walks in areas where it is quiet and people are few.

Being in the countryside or woodland has often been shown to have positive impact on wellbeing. If he can get out, but to areas that are unthreatening, maybe an interest/confidence to interact more might grow.

Thank you Turtle.  Much appreciated. 

It isn't the perfectly content that will make any meaningful change.

I'm always here for support  if you need me.  

So true.  And actually echoes what others, like my tai chi teacher, have also said to me.  My energies are mainly held in and around my head apparently.  Plus those that are in my body are mainly in the right side.  I sort of feel as though I don't fully inhabit my body, especially the left side.  I need to drop back down into myself because it's not healthy.   I actually do this sometimes in a chi kung standing meditation which is a bit like an intensive body scanning technique but works with a kind of "internal dissolving" of any knotty bits or discomfort.  

And the wit's end experience is really a repeating pattern not just within my own life, but very familiar from my upbringing too, especially when dad ran into major issues and, there again, it was pointless reaching out because nobody understood and it was all handled on an intellectual level ("What on earth can we do?  Where can we turn?  This feels shameful.  We have to hide it! etc etc).  I think this is a cultural thing too, mind, as well as very strong within me and mine.  After all, there can always be the feeling that the right answer is out there somewhere, in the next book or the next professional.  But if I'm stuck in that mode then it's clearly not serving me very well plus I'm living on the never never.

Hard to feel safe and secure in my own body.  With chronic progressive kidney and liver disease, it seems as though it's working against me.  But then maybe just being fully in my body will help me live more comfortably with what I've got.   

This is very close to home for me and my own family. I just want to let you know you are not alone here Jenny. We are going through much of the same. 

Firstly, I wanted to share with you one of the fundamental lessons from trauma I learned in my ' understanding phase ' of what trauma actually is and does and that is ; that for many people, your own personal trauma/s plays out over and over again throughout life.

Some of us are not even aware of this pattern repeating itself until much later in life, until it becomes painful, until it needs addressing. Some of us may carry on supressing this by all manor of behaviours including self-medicating but just like trying to push a beach ball under water, it always pops up waiting to be acknowledged and addressed. Hence the title of the book ' The Body Keeps the Score '.

For example, my main trauma occurred when I was just a toddler and continued for a number of years. I had to go back and re-visit how this made me feel at the time ( best done through therapy ) and that is how I found my repeating pattern of behaviour and reoccurring feelings. As a toddler, I had no escape and so the pattern was a combination of fear, overwhelm, frustration, helplessness, hopelessness, meltdown and shutdowns, in other words, for a toddler, a form of torture thus throughout life my main theme or response was escape. 

Self-medicating, addictions, hedonism, risky behaviours, stimulation are all very common life patterns of the traumatised. 

I would suggest you are at your wit's end because you have been living most of your life by your wit's alone and possibly because you have never felt comfortable in your own skin. This is the result of too much mind. Trying to solve everything by the intellect. 

I would say, drop everything and begin your healing process, not of the pursuit of knowledge for the sake of it but for true understanding of yourself and your debilitating patterns and how to feel safe and secure in your own body.  It's only then you can understand anyone else's trauma.

Thanks Turtle.  It's a very long journey here and some of it started over 20 years ago when I was diagnosed with a late onset progressive disease.  So the aspects like yoga, tai chi (the chi kung meditation and exercises really helped), diet (which I needed to consider to spare my ailing kidneys), mindfulness, visualisation and various other therapies have been underway for a long time, although it's good to be reminded because patterns that are even older still tend to re-emerge from time to time and can be quite sabotaging.

And, no, there's no super-therapist around either.  I find myself wondering whether I've become habituated to referring to "experts" and searching for external answers when really the expert on me is me.  

Overall I think it's the desperation that keep rising within me as nothing changes that leaves me casting about like a fish being reeled in no matter what I do.  Within therapy, I often find that the therapist leaves long pauses for me to reflect, but that my response to this is to feel irritated and disappointed because nothing really bubbles up, they can see this and I've explained about it already, yet still they sit and wait.  I might have hidden depths, it's true, but even during my more reflective, comtemplative phases, I find peace but no change.  Then find even that peace is lost when I am confronted with the sight of my son almost running away to escape from me when I only wanted to say hello and have some kind of relationship, however small.  

I might just need to hang in for longer and stop casting about.  I might still be reeled in but maybe I'll eventually notice something that is of some comfort.  I just don't know.  On a purely intellectual level it's easy to say that I'm at my wit's end.  But they layers beneath are probably more important and might set me on a more authentic course.         

I'm sure you'll find the right understanding person Jenny. It's a big undertaking so make sure you have good support on hand from your partner and anyone else whom you're close to and you may have to be open to working on your own healing first before you can help anyone else. I would also suggest a healthy diet and plenty of exercise alongside any therapy and of course any of the remedies of Bessel Von Der Kolk. You know, some activity of body movement like Yoga, Thai-chi or the like. 

I really hope you can find together better methods of communicating & bonding with your son so he doesn't feel the need to avoid you in the same room and that you are able to form a much healthier relationship together. That must be difficult presently. I cannot emphasis enough the need for good, healthy communication. It is absolutely imperative for any progress to occur. Without this you only have the status quo. 

Jenny Butterfly said:

in most therapy, there is the assumption that the client contains their own self-righting sense of direction and of what is best for them

I am also a believer that we all have the answers inside us. We just fill ourselves up with so much fear & nonsense a lot of the time we cannot hear our inner voice any longer but it is always there. The problem is instead of using the mind as a logical tool for certain tasks or to solve problems, we let it take over the whole show and then we have a tendency to intellectualise everything, to intellectualise life itself and the people around us. That can be paralysing as well as fruitless. Some of us who have experienced trauma can also use this as an escape. To constantly feel the need to be consuming information or whatever, to escape ourselves or to be at ease with ourselves. 

That's why I would say to you not to place too high an expectation of finding a superman/women therapist to help you fix everybody at once but more an emphasis on freeing yourself from your own trauma first.

Yes, my own path has been very meandering but I came across Gabor Mate when looking at ADHD (for my older son) and reading "Scattered", amongst other things.  And yes, I'd definitely need a therapist to walk alongside me. 

In our case it couldn't be group therapy because, of course, our son would simply refuse to attend.  But it would need to be an autistic practitioner with knowledge and experience of trauma, and specifically intergenerational trauma.  Someone who would be prepared to work with me, not just on me, but in a supervisory way to help with family dynamics and ways of being that would help to improve things.  I suppose, more of a coach than a therapist because, in most therapy, there is the assumption that the client contains their own self-righting sense of direction and of what is best for them, with the therapist providing the safe space in which to explore and develop this.  I, on the other hand, have probably been over-therapised in the past, and still don't have the tools or coping strategies to help to improve our situation.  So i need someone who knows the terrain, can assist with examples and give hope that is backed up by their professional (and maybe also personal) experience.

One issue may be that I would be coming to therapy with what the therapist might term "an unowned problem", in that I want to speak about my sons as much as myself, whereas the therapist might only feel able to work with me as an individual rather than as a parent.  This might also breach confidentiality ethics because I'd be discussing someone else's issues without their permission and, for example, the BACP might have something to say about that.   So i don't think that what I have in mind is common practice, although, from talking to other parents, I think it's much needed.  

I kind of know what you mean about things coming along when we're ready and, to an extent, this has been true in my own life.  But when it comes to my sons I fear there may be a suicide risk, even though they appear to be safe for now.  I also fear this risk might increase as years of life pass by without them really experiencing anything much that they might ordinarily chosen.  I look back at my dad's life, for example, and can see a long period (of around 10 years) which for him (and for us when it comes to feeling we had a parent and shared family experiences) is just missing.  So it feels urgent and I dare not wait for things to unfold.  I'm very, very afraid of history repeating itself.  And I desperately need to experience more of the positives of being neurodivergent.  

I think you're wise to be creating structureschooling and support at home, at least for now.  With hindsight, I don't think that mainstream school was safe for my sons.  It simply installed loads of layers of trauma which I now don't know how to unpick.  Looking back, I'd simply home educate and deal with the difficulties and practicalities associated with that rather than being in the position of trying to restore things for young people whose lives seem to have been demolished. 

 The man knows his stuff. My introduction to trauma was through Gabor Mate but it was Van Der Kolk who really hit home for me. His professionalism and precision in his field are remarkable. It was a painful walk back alone though and I wasn't prepared for it. I'd recommend a therapist alongside most definitely for those beginning their healing. I had found a trauma informed yoga class but I wasn't comfortable in an indoor group with covid. 

 I'm not sure if it's group therapy you mean but I guess you could contact a therapy body or organisation and ask them if what you have in mind is common practise. I'm sure you'll find someone with experience in ASC & Trauma though privately. 

Hindsight is a wonderful thing. I knew nothing about trauma a few years ago let alone when your son was 15. They say we are only given things when we're ready .

We are trying to create some structure for him with not being at school, trying to insert some school work at home and meetings with the child psychologist on his issues with school. Looking down the private route too atm for more regular support. 

Thanks Turtle.  This confirms me on the path that I'm on because funnily enough I am just re-reading "The Body keeps the Score".  Plus I've been looking more at polyvagal theory and somatic experiencing as this all seems consistent.  

I'm finding it quite hard to find a therapist though - looking for a trauma-informed neurodivergent therapist who has specific autism training and will work with family as well as individual issues (I don't ask much, do I?)

I definitely believe that the situation he's now in is the result of trauma and really wish I'd known what I know now when my son was 15.  At least when it comes to your nephew you are in a stronger position to help and i'm sure this will be good for helping with any jnter-generational trauma for years to come too.  

It must be heart-breaking for you to watch this as a parent. Obviously I don't know your son or what started all this at age 15 as you say but I can somewhat relate. We are worried my young nephew could head in the same direction before even secondary school age. He now refuses to go to primary school at all and spends most of his waking hours on one form of screen or another.  He's not quite at the age yet where he can totally withdraw into his room but I'm sure, if he had the choice, he would. His Mum has tried everything along with the school to get him back on a daily basis to no avail. 

We are certain the root trigger for all this was going from having very good teachers for the first few years to having the misfortune of receiving a bad teacher totally clueless with any of the kids with special needs to the point where they were singled out, punished and isolated for their behaviour which was simply put down to ' bad behaviour ' from this arrogant, ignorant and lazy teacher. We could see this happening before our eyes. The stress of this for him was heart-breaking to watch. This was the beginning of his push back against going to school and I couldn't blame him. The Lock-downs were the final nail in the coffin even with the event of a new school year and a new, better teacher. The damage was done. The trust had been lost and the self- protective rope-bridge had been pulled-up and still is. 

So I believe you are right when you say you believe it was trauma or a series of traumatic events in the case of your own son that probably led to his own withdrawal. I speak from experience of having my own demon teacher at primary school and along with other traumatic events at the same time. It was a turning point in my life and a negative one. My coping mechanism was not withdrawal but escape and became the main theme of my life for decades without realising it for much of it. 

So from my own experience and that of observing my nephew from diagnosis onwards, I can only conclude that ASC and Trauma are inextricably linked and go together like Horse & Cart.

The problem with both under the offerings of our current health system is that neither are ' Mind ' problems but body conditions. We all know about Autism here but the light-bulb moment for me regarding trauma was learning that it is stored in the body memory and not the mind. Which is why talking therapies have little success if any. I can only direct you to the work of Dr Bessel Von Der Kolk for the trauma aspect who actually offers proven therapies and management techniques. You may also want to look into finding a therapist experienced in ASC & Trauma where you could start by attending yourself. It may help you too and maybe get some clues or solutions into your son's problem of non-engagement ?

Many thank H.  A few years ago, when our son no longer felt he could live at home, we were on the verge of renting a flat for him.  Then later, through the mental health team, the idea of supported housing very nearly came off.  In both instances though, our son decided he'd prefer to remain in the family home and it would have felt bad to insist he follow through on his plans when he seemed so certain he didn't really want to move out.  

We couldn't remain in our original family home though - it contained too many bad memories at that point plus was located near the school in which he was bullied.  So we moved house and changed areas, which was very expensive.  This did help a bit and our position is more stable (he had been threatening to sleep rough and actually did it a few times, telling us he was at a friend's). But it'll take a while to afford much more.  The existing house is a bit small and it'd be better to move again rather than extend and take up the small patch of garden we have.

So I'd say that's a possibility, but needs some saving up for.  

For now, I wish he'd just speak to me.  I fear I've lost him and that things will just continue this way.  I don't understand why things have to be this way.  

Jenny Butterfly said:

  I daren't make another mistake.

I think you sound the kind of mother any person would love to have and I can understand how you are grieving what has gone before with your son.  This is a different example but may hold true to your situation and is something I have come to understand from analysing what went wrong in my marriage.  I think for me, in my efforts "to fix" the issues we were having in the relationship, it caused my ex husband to retreat further and further into himself.  We went to counselling and I poured my heart out and when the counsellor asked my ex for his input, he would say "I don't know."  This felt rejecting to me because I was putting so much effort in.  It seemed whether I withdrew from him or I tried to be kind with him, nothing worked.  I in the end left because I was losing myself in the process of putting everything I had into the relationship.

I see parallels here with you.  I fear you are losing yourself in your efforts to reach out and bring your son out of his solitude.  I wonder how old he is and if he is old enough to live in supported accommodation? The reason I mention this is, when I left my husband and my Dad died, I moved back into my childhood home as an adult in order that my Mum and I could support each other through our grief.  I found living with her and raising my daughter was not working.  I stayed there until I was able to bid for a property which my daughter and I were lucky enough to get.  I do suffer from extreme loneliness despite my love of my own company but my Mum and I are back to being buddies again.

I wonder if this could be an option for your circumstances and it is most probably something you have examined as you seem to have all bases covered with regard to your family which's lovely.  If this is not an option, is there any way that your house could be modified so your son could have an apartment where you have meetings set up and accounted for so he expects it? I know emotionally this is upsetting to feel you would have to do this but it might give you both the space he is trying to put in place and you the time to nurture yourself?

I'm sure you've thoughts of this though..... Sending hugs

Jenny Butterfly said:

  I daren't make another mistake.

I think you sound the kind of mother any person would love to have and I can understand how you are grieving what has gone before with your son.  This is a different example but may hold true to your situation and is something I have come to understand from analysing what went wrong in my marriage.  I think for me, in my efforts "to fix" the issues we were having in the relationship, it caused my ex husband to retreat further and further into himself.  We went to counselling and I poured my heart out and when the counsellor asked my ex for his input, he would say "I don't know."  This felt rejecting to me because I was putting so much effort in.  It seemed whether I withdrew from him or I tried to be kind with him, nothing worked.  I in the end left because I was losing myself in the process of putting everything I had into the relationship.

I see parallels here with you.  I fear you are losing yourself in your efforts to reach out and bring your son out of his solitude.  I wonder how old he is and if he is old enough to live in supported accommodation? The reason I mention this is, when I left my husband and my Dad died, I moved back into my childhood home as an adult in order that my Mum and I could support each other through our grief.  I found living with her and raising my daughter was not working.  I stayed there until I was able to bid for a property which my daughter and I were lucky enough to get.  I do suffer from extreme loneliness despite my love of my own company but my Mum and I are back to being buddies again.

I wonder if this could be an option for your circumstances and it is most probably something you have examined as you seem to have all bases covered with regard to your family which's lovely.  If this is not an option, is there any way that your house could be modified so your son could have an apartment where you have meetings set up and accounted for so he expects it? I know emotionally this is upsetting to feel you would have to do this but it might give you both the space he is trying to put in place and you the time to nurture yourself?

I'm sure you've thoughts of this though..... Sending hugs

Thank you Turtle.  Much appreciated. 

It isn't the perfectly content that will make any meaningful change.

I'm always here for support  if you need me.  

So true.  And actually echoes what others, like my tai chi teacher, have also said to me.  My energies are mainly held in and around my head apparently.  Plus those that are in my body are mainly in the right side.  I sort of feel as though I don't fully inhabit my body, especially the left side.  I need to drop back down into myself because it's not healthy.   I actually do this sometimes in a chi kung standing meditation which is a bit like an intensive body scanning technique but works with a kind of "internal dissolving" of any knotty bits or discomfort.  

And the wit's end experience is really a repeating pattern not just within my own life, but very familiar from my upbringing too, especially when dad ran into major issues and, there again, it was pointless reaching out because nobody understood and it was all handled on an intellectual level ("What on earth can we do?  Where can we turn?  This feels shameful.  We have to hide it! etc etc).  I think this is a cultural thing too, mind, as well as very strong within me and mine.  After all, there can always be the feeling that the right answer is out there somewhere, in the next book or the next professional.  But if I'm stuck in that mode then it's clearly not serving me very well plus I'm living on the never never.

Hard to feel safe and secure in my own body.  With chronic progressive kidney and liver disease, it seems as though it's working against me.  But then maybe just being fully in my body will help me live more comfortably with what I've got.   

This is very close to home for me and my own family. I just want to let you know you are not alone here Jenny. We are going through much of the same. 

Firstly, I wanted to share with you one of the fundamental lessons from trauma I learned in my ' understanding phase ' of what trauma actually is and does and that is ; that for many people, your own personal trauma/s plays out over and over again throughout life.

Some of us are not even aware of this pattern repeating itself until much later in life, until it becomes painful, until it needs addressing. Some of us may carry on supressing this by all manor of behaviours including self-medicating but just like trying to push a beach ball under water, it always pops up waiting to be acknowledged and addressed. Hence the title of the book ' The Body Keeps the Score '.

For example, my main trauma occurred when I was just a toddler and continued for a number of years. I had to go back and re-visit how this made me feel at the time ( best done through therapy ) and that is how I found my repeating pattern of behaviour and reoccurring feelings. As a toddler, I had no escape and so the pattern was a combination of fear, overwhelm, frustration, helplessness, hopelessness, meltdown and shutdowns, in other words, for a toddler, a form of torture thus throughout life my main theme or response was escape. 

Self-medicating, addictions, hedonism, risky behaviours, stimulation are all very common life patterns of the traumatised. 

I would suggest you are at your wit's end because you have been living most of your life by your wit's alone and possibly because you have never felt comfortable in your own skin. This is the result of too much mind. Trying to solve everything by the intellect. 

I would say, drop everything and begin your healing process, not of the pursuit of knowledge for the sake of it but for true understanding of yourself and your debilitating patterns and how to feel safe and secure in your own body.  It's only then you can understand anyone else's trauma.

Thanks Turtle.  It's a very long journey here and some of it started over 20 years ago when I was diagnosed with a late onset progressive disease.  So the aspects like yoga, tai chi (the chi kung meditation and exercises really helped), diet (which I needed to consider to spare my ailing kidneys), mindfulness, visualisation and various other therapies have been underway for a long time, although it's good to be reminded because patterns that are even older still tend to re-emerge from time to time and can be quite sabotaging.

And, no, there's no super-therapist around either.  I find myself wondering whether I've become habituated to referring to "experts" and searching for external answers when really the expert on me is me.  

Overall I think it's the desperation that keep rising within me as nothing changes that leaves me casting about like a fish being reeled in no matter what I do.  Within therapy, I often find that the therapist leaves long pauses for me to reflect, but that my response to this is to feel irritated and disappointed because nothing really bubbles up, they can see this and I've explained about it already, yet still they sit and wait.  I might have hidden depths, it's true, but even during my more reflective, comtemplative phases, I find peace but no change.  Then find even that peace is lost when I am confronted with the sight of my son almost running away to escape from me when I only wanted to say hello and have some kind of relationship, however small.  

I might just need to hang in for longer and stop casting about.  I might still be reeled in but maybe I'll eventually notice something that is of some comfort.  I just don't know.  On a purely intellectual level it's easy to say that I'm at my wit's end.  But they layers beneath are probably more important and might set me on a more authentic course.         

I'm sure you'll find the right understanding person Jenny. It's a big undertaking so make sure you have good support on hand from your partner and anyone else whom you're close to and you may have to be open to working on your own healing first before you can help anyone else. I would also suggest a healthy diet and plenty of exercise alongside any therapy and of course any of the remedies of Bessel Von Der Kolk. You know, some activity of body movement like Yoga, Thai-chi or the like. 

I really hope you can find together better methods of communicating & bonding with your son so he doesn't feel the need to avoid you in the same room and that you are able to form a much healthier relationship together. That must be difficult presently. I cannot emphasis enough the need for good, healthy communication. It is absolutely imperative for any progress to occur. Without this you only have the status quo. 

Jenny Butterfly said:

in most therapy, there is the assumption that the client contains their own self-righting sense of direction and of what is best for them

I am also a believer that we all have the answers inside us. We just fill ourselves up with so much fear & nonsense a lot of the time we cannot hear our inner voice any longer but it is always there. The problem is instead of using the mind as a logical tool for certain tasks or to solve problems, we let it take over the whole show and then we have a tendency to intellectualise everything, to intellectualise life itself and the people around us. That can be paralysing as well as fruitless. Some of us who have experienced trauma can also use this as an escape. To constantly feel the need to be consuming information or whatever, to escape ourselves or to be at ease with ourselves. 

That's why I would say to you not to place too high an expectation of finding a superman/women therapist to help you fix everybody at once but more an emphasis on freeing yourself from your own trauma first.

Yes, my own path has been very meandering but I came across Gabor Mate when looking at ADHD (for my older son) and reading "Scattered", amongst other things.  And yes, I'd definitely need a therapist to walk alongside me. 

In our case it couldn't be group therapy because, of course, our son would simply refuse to attend.  But it would need to be an autistic practitioner with knowledge and experience of trauma, and specifically intergenerational trauma.  Someone who would be prepared to work with me, not just on me, but in a supervisory way to help with family dynamics and ways of being that would help to improve things.  I suppose, more of a coach than a therapist because, in most therapy, there is the assumption that the client contains their own self-righting sense of direction and of what is best for them, with the therapist providing the safe space in which to explore and develop this.  I, on the other hand, have probably been over-therapised in the past, and still don't have the tools or coping strategies to help to improve our situation.  So i need someone who knows the terrain, can assist with examples and give hope that is backed up by their professional (and maybe also personal) experience.

One issue may be that I would be coming to therapy with what the therapist might term "an unowned problem", in that I want to speak about my sons as much as myself, whereas the therapist might only feel able to work with me as an individual rather than as a parent.  This might also breach confidentiality ethics because I'd be discussing someone else's issues without their permission and, for example, the BACP might have something to say about that.   So i don't think that what I have in mind is common practice, although, from talking to other parents, I think it's much needed.  

I kind of know what you mean about things coming along when we're ready and, to an extent, this has been true in my own life.  But when it comes to my sons I fear there may be a suicide risk, even though they appear to be safe for now.  I also fear this risk might increase as years of life pass by without them really experiencing anything much that they might ordinarily chosen.  I look back at my dad's life, for example, and can see a long period (of around 10 years) which for him (and for us when it comes to feeling we had a parent and shared family experiences) is just missing.  So it feels urgent and I dare not wait for things to unfold.  I'm very, very afraid of history repeating itself.  And I desperately need to experience more of the positives of being neurodivergent.  

I think you're wise to be creating structureschooling and support at home, at least for now.  With hindsight, I don't think that mainstream school was safe for my sons.  It simply installed loads of layers of trauma which I now don't know how to unpick.  Looking back, I'd simply home educate and deal with the difficulties and practicalities associated with that rather than being in the position of trying to restore things for young people whose lives seem to have been demolished. 

 The man knows his stuff. My introduction to trauma was through Gabor Mate but it was Van Der Kolk who really hit home for me. His professionalism and precision in his field are remarkable. It was a painful walk back alone though and I wasn't prepared for it. I'd recommend a therapist alongside most definitely for those beginning their healing. I had found a trauma informed yoga class but I wasn't comfortable in an indoor group with covid. 

 I'm not sure if it's group therapy you mean but I guess you could contact a therapy body or organisation and ask them if what you have in mind is common practise. I'm sure you'll find someone with experience in ASC & Trauma though privately. 

Hindsight is a wonderful thing. I knew nothing about trauma a few years ago let alone when your son was 15. They say we are only given things when we're ready .

We are trying to create some structure for him with not being at school, trying to insert some school work at home and meetings with the child psychologist on his issues with school. Looking down the private route too atm for more regular support. 

Thanks Turtle.  This confirms me on the path that I'm on because funnily enough I am just re-reading "The Body keeps the Score".  Plus I've been looking more at polyvagal theory and somatic experiencing as this all seems consistent.  

I'm finding it quite hard to find a therapist though - looking for a trauma-informed neurodivergent therapist who has specific autism training and will work with family as well as individual issues (I don't ask much, do I?)

I definitely believe that the situation he's now in is the result of trauma and really wish I'd known what I know now when my son was 15.  At least when it comes to your nephew you are in a stronger position to help and i'm sure this will be good for helping with any jnter-generational trauma for years to come too.  

It must be heart-breaking for you to watch this as a parent. Obviously I don't know your son or what started all this at age 15 as you say but I can somewhat relate. We are worried my young nephew could head in the same direction before even secondary school age. He now refuses to go to primary school at all and spends most of his waking hours on one form of screen or another.  He's not quite at the age yet where he can totally withdraw into his room but I'm sure, if he had the choice, he would. His Mum has tried everything along with the school to get him back on a daily basis to no avail. 

We are certain the root trigger for all this was going from having very good teachers for the first few years to having the misfortune of receiving a bad teacher totally clueless with any of the kids with special needs to the point where they were singled out, punished and isolated for their behaviour which was simply put down to ' bad behaviour ' from this arrogant, ignorant and lazy teacher. We could see this happening before our eyes. The stress of this for him was heart-breaking to watch. This was the beginning of his push back against going to school and I couldn't blame him. The Lock-downs were the final nail in the coffin even with the event of a new school year and a new, better teacher. The damage was done. The trust had been lost and the self- protective rope-bridge had been pulled-up and still is. 

So I believe you are right when you say you believe it was trauma or a series of traumatic events in the case of your own son that probably led to his own withdrawal. I speak from experience of having my own demon teacher at primary school and along with other traumatic events at the same time. It was a turning point in my life and a negative one. My coping mechanism was not withdrawal but escape and became the main theme of my life for decades without realising it for much of it. 

So from my own experience and that of observing my nephew from diagnosis onwards, I can only conclude that ASC and Trauma are inextricably linked and go together like Horse & Cart.

The problem with both under the offerings of our current health system is that neither are ' Mind ' problems but body conditions. We all know about Autism here but the light-bulb moment for me regarding trauma was learning that it is stored in the body memory and not the mind. Which is why talking therapies have little success if any. I can only direct you to the work of Dr Bessel Von Der Kolk for the trauma aspect who actually offers proven therapies and management techniques. You may also want to look into finding a therapist experienced in ASC & Trauma where you could start by attending yourself. It may help you too and maybe get some clues or solutions into your son's problem of non-engagement ?

Many thank H.  A few years ago, when our son no longer felt he could live at home, we were on the verge of renting a flat for him.  Then later, through the mental health team, the idea of supported housing very nearly came off.  In both instances though, our son decided he'd prefer to remain in the family home and it would have felt bad to insist he follow through on his plans when he seemed so certain he didn't really want to move out.  

We couldn't remain in our original family home though - it contained too many bad memories at that point plus was located near the school in which he was bullied.  So we moved house and changed areas, which was very expensive.  This did help a bit and our position is more stable (he had been threatening to sleep rough and actually did it a few times, telling us he was at a friend's). But it'll take a while to afford much more.  The existing house is a bit small and it'd be better to move again rather than extend and take up the small patch of garden we have.

So I'd say that's a possibility, but needs some saving up for.  

For now, I wish he'd just speak to me.  I fear I've lost him and that things will just continue this way.  I don't understand why things have to be this way.