Son has refused the assessment

Well, the CPN and woman from the autism team came in the front door and our son escaped out the back!  He had initially agreed to the assessment but, he says, only because he felt that the psychiatrist was too insistant and he felt coerced.  And now he's saying he doesn't want it, he won't see them and it's his decision.  The trouble is, we have to live with the consequences of his decision too.  He's mucky, withdrawn and spends all day in ritualistic behaviours to avoid "negative energy" or else on his computer.  He also quite frequently blanks us and rarely goes out.  No friends and no contacts over the phone or internet either.  There's a real atmosphere in our home and, even if he insists that what he's doing is more likely to make him happy, I think he is making himself, and the rest of us, very miserable indeed.

Of course, we are running into issues around mental capacity here.  The psychiatrist insists that he has capacity and we, of course, would always want to promote autonomy and independence where possible.  But to us it seems that he is in the grip of delusional beliefs and that, without the effects of possible autism plus associated mental illness through years of non recognition of this, he certainly wouldn't be choosing to spend his life like this!  What on earth can we do?  He seems to be using his capacity to ruin his life and ours too!   

Parents
  • To be honest, I'm not too happy with the perfect strangers approach but we are really struggling.  I would even go so far as to say that the past 4 years have been traumatic for us all.  I suppose our desperation tends to reinforce the idea that somewhere out there there will be an expert who can help.  But sadly our experience to date has been of people who don't understand and who have no personal experience.  I am only pushed onwards by fear of having overlooked something that might possibly help and I know that, although the things we've been able to do as parents might have helped somewhat, they've quite obviously been insufficient.

    To date we have prefered to be supportive and talk things through where possible.  We've also offerend to support our son with alternative ways of completing his education, including OU and other correspondence courses, home tutoring and local courses.  But also emphasised that it's always his choice and whatever he chooses we'll support - so this includes non academic courses, classes, groups and, if he wants to go down that route, any kind of therapy or support he'd like.  In terms of retreating from the world, well, we're not terribly outgoing ourselves, so we have a cosy nest here and have tried to make it as relaxing and easy as possible here.  We went through a long period (5 - 6 months) of moving between holiday cottages when the "negative energy" or "contamination" reached unmanageable proportions at home and our son started to lie to us and pretend he was going round a friend's but really sleeping rough in parks and forests, plus walking miles and miles to dispel the energy.   This eventually became the point at which we absolutely had to involve services as the stay in each cottage was getting shorter and shorter and we no longer felt we could guarantee his safety.  The services, though, made things worse (including a horrendous mental health assessment and a troupe of ill-informed MH workers from the crisis team).  The early intervention team have been a bit better but, many sessions later, we are no better off and the "negative energy" (felt to be a psychotic delusion) is still with us.  Our old house eventually became so "contaminated" that our son was feeling constantly sick and actually attacked by the energy and, against the advice of services, we eventually decided to have a new start and move.  We could see the logic in their argument that we were reinforcing the idea of the energy and he in some way needed to learn to cope with it, but we decided that we couldn't wait years for this to happen while our son was in such visible distress.  Moving has helped but not eliminated the problem.  However, we continue to make the environment as calming as possible, there are few demands here and we've made it clear that we'll support him no matter what.  

    Even at that though, he's been brought back home by the police on a couple of occasions over the past 6 months having run away following what I'd call "conversations" but he calls "arguments."  The flashpoints tend to be around issues about negative energy and the rituals to clear it, personal hygiene, and blanking us (which I find upsetting).  We also remain very worried about him having absolutely no contact with the outside world and, as it seems to us, very little to look forward to. 

    The book did strike some chords, it's true, both as regards our son and ourselves.  I'll have to fish for the section you mention though as thre are no page nubers on my Kindle version.  We are wondering, as are the services now, whether the lack of any recognition of our son's difficulties at earlier stages in his development has led to an extreme situation.  Certainly we've managed to have conversations with him about the nature of the negative energy and the closest we've come to building bridges in terms of our understanding has been when we've regarded the negative energy as a metaphorical description of emotional exchanges between people during any sort of contact (a kind of cloud, if you like, that is coloured by the feelings that bat to and fro and which, due to the way in which it's built up in our son's case, can leave a kind of residue - the "contamination").  But to me it seems it's all gone way too far for any CBT-type interventions to help.  He wouldn't accept any "how to" advice from others anyway - we are all suspect, not to be trusted and don't understand.  So he will probably continue to try to resolve this in his own way.  At the moment he is pacing up and down, he has his exercises and he uses computer games as a "distraction."  Other rituals have included more bizarre practices like belching or spitting to rid himself of negative energy (sometimes facilitated by the gas in Cola, sometimes not, but at one point there were about 40 2 litre bottles of cola in his room, all at various levels but not exactly being completely drunk, as if it had some kind of healing or blocking "talisman" properties).  If most parents are able to cope with this kind of behaviour in other ways then I really, really need to know about these ways whilst making it clear that general support, empathy and a largely non-judgmental approach combined with simple CBT-style advice from time to time just haven't seemed to substantially help or move things on. 

    To date, then, none of these things have actually altered our situation and we are left in a position where we still don't feel we know what's happened, why it's happened and how to make things better.  As it stands our son difficulties seem to incorporate features of several diagnoses - psychosis, delusional disorder, mood disorder, OCD and autism.  We don't necessarily need to have one of these labels to make progress, that's true, but we do need to know how to handle things for the best and it might help to know what the primary problem - the centre of gravity - is.  I feel as though I'm battling against an invisible enemy but even as I say that am aware that the sense of battle is a problem in itself. 

    Overall any recommendations for books, websites or other resources would be really welcome.  Some thing more specific on hygiene and self care would be really welcome too.  We have tried to offer plenty of alternatives.  We have a bath and a shower so he can choose.  He doesn't have to put the light/fan on if he doesn't want.  He has a choice of products - organic, favourite fragrances (chocolate or mint in his case), alternatives to shampoo like an organic soap bar, an assortment of flannels, loofahs and towels of different textures.  At the moment I'd find it very difficult to say when he last washed and I never give him more than a gentle nudge on this one as I don't want to create a situation in which negative emotions kick in (exacerbating our energy problem).  But he looks unkempt and he smells and I have no doubt that when he insists he is feeling negative energy from others in their looks or manner they are actually responding to his appearance. 

    This last problem is highly triggering for me as I grew up with a dad who never washed and who, as far as I know, never ever used shampoo.  Nothing ever worked and my sister was even bullied for having a dad who "looks like a tramp."  Anything to dispel my personal fears about my son being held in the uncontrollable grip of something genetic would also help. 

    Coming back to your last question, Recombinantsocks, he no longer has any friends.  He used to be quite gregarious but then stopped inviting friends round and refused to come out when they came round for him.  Eventually, of course, they stopped coming.  He says that he was never really close to them and inside never felt he fitted in anyway.  So we are the closest people to him and he very often won't talk to us.  He has had 2 rounds of so-called psychotherapy which have served to alienate him still further and would certainly refuse to have any more.  Apparently these therapists (linked to the early intervention team and both well regarded and published) both tried to encourage him to set goals that they could work towards.  Of course, my son didn't have any goals he was prepared to share with them and, being of age, decided not to continue.  I have my thoughts about this, believing that the therapists should have gone much more slowly and worked firstly on building a rapport and promoting enegagement but, in these days of time limited interventions, this might have been too much to ask.        

Reply
  • To be honest, I'm not too happy with the perfect strangers approach but we are really struggling.  I would even go so far as to say that the past 4 years have been traumatic for us all.  I suppose our desperation tends to reinforce the idea that somewhere out there there will be an expert who can help.  But sadly our experience to date has been of people who don't understand and who have no personal experience.  I am only pushed onwards by fear of having overlooked something that might possibly help and I know that, although the things we've been able to do as parents might have helped somewhat, they've quite obviously been insufficient.

    To date we have prefered to be supportive and talk things through where possible.  We've also offerend to support our son with alternative ways of completing his education, including OU and other correspondence courses, home tutoring and local courses.  But also emphasised that it's always his choice and whatever he chooses we'll support - so this includes non academic courses, classes, groups and, if he wants to go down that route, any kind of therapy or support he'd like.  In terms of retreating from the world, well, we're not terribly outgoing ourselves, so we have a cosy nest here and have tried to make it as relaxing and easy as possible here.  We went through a long period (5 - 6 months) of moving between holiday cottages when the "negative energy" or "contamination" reached unmanageable proportions at home and our son started to lie to us and pretend he was going round a friend's but really sleeping rough in parks and forests, plus walking miles and miles to dispel the energy.   This eventually became the point at which we absolutely had to involve services as the stay in each cottage was getting shorter and shorter and we no longer felt we could guarantee his safety.  The services, though, made things worse (including a horrendous mental health assessment and a troupe of ill-informed MH workers from the crisis team).  The early intervention team have been a bit better but, many sessions later, we are no better off and the "negative energy" (felt to be a psychotic delusion) is still with us.  Our old house eventually became so "contaminated" that our son was feeling constantly sick and actually attacked by the energy and, against the advice of services, we eventually decided to have a new start and move.  We could see the logic in their argument that we were reinforcing the idea of the energy and he in some way needed to learn to cope with it, but we decided that we couldn't wait years for this to happen while our son was in such visible distress.  Moving has helped but not eliminated the problem.  However, we continue to make the environment as calming as possible, there are few demands here and we've made it clear that we'll support him no matter what.  

    Even at that though, he's been brought back home by the police on a couple of occasions over the past 6 months having run away following what I'd call "conversations" but he calls "arguments."  The flashpoints tend to be around issues about negative energy and the rituals to clear it, personal hygiene, and blanking us (which I find upsetting).  We also remain very worried about him having absolutely no contact with the outside world and, as it seems to us, very little to look forward to. 

    The book did strike some chords, it's true, both as regards our son and ourselves.  I'll have to fish for the section you mention though as thre are no page nubers on my Kindle version.  We are wondering, as are the services now, whether the lack of any recognition of our son's difficulties at earlier stages in his development has led to an extreme situation.  Certainly we've managed to have conversations with him about the nature of the negative energy and the closest we've come to building bridges in terms of our understanding has been when we've regarded the negative energy as a metaphorical description of emotional exchanges between people during any sort of contact (a kind of cloud, if you like, that is coloured by the feelings that bat to and fro and which, due to the way in which it's built up in our son's case, can leave a kind of residue - the "contamination").  But to me it seems it's all gone way too far for any CBT-type interventions to help.  He wouldn't accept any "how to" advice from others anyway - we are all suspect, not to be trusted and don't understand.  So he will probably continue to try to resolve this in his own way.  At the moment he is pacing up and down, he has his exercises and he uses computer games as a "distraction."  Other rituals have included more bizarre practices like belching or spitting to rid himself of negative energy (sometimes facilitated by the gas in Cola, sometimes not, but at one point there were about 40 2 litre bottles of cola in his room, all at various levels but not exactly being completely drunk, as if it had some kind of healing or blocking "talisman" properties).  If most parents are able to cope with this kind of behaviour in other ways then I really, really need to know about these ways whilst making it clear that general support, empathy and a largely non-judgmental approach combined with simple CBT-style advice from time to time just haven't seemed to substantially help or move things on. 

    To date, then, none of these things have actually altered our situation and we are left in a position where we still don't feel we know what's happened, why it's happened and how to make things better.  As it stands our son difficulties seem to incorporate features of several diagnoses - psychosis, delusional disorder, mood disorder, OCD and autism.  We don't necessarily need to have one of these labels to make progress, that's true, but we do need to know how to handle things for the best and it might help to know what the primary problem - the centre of gravity - is.  I feel as though I'm battling against an invisible enemy but even as I say that am aware that the sense of battle is a problem in itself. 

    Overall any recommendations for books, websites or other resources would be really welcome.  Some thing more specific on hygiene and self care would be really welcome too.  We have tried to offer plenty of alternatives.  We have a bath and a shower so he can choose.  He doesn't have to put the light/fan on if he doesn't want.  He has a choice of products - organic, favourite fragrances (chocolate or mint in his case), alternatives to shampoo like an organic soap bar, an assortment of flannels, loofahs and towels of different textures.  At the moment I'd find it very difficult to say when he last washed and I never give him more than a gentle nudge on this one as I don't want to create a situation in which negative emotions kick in (exacerbating our energy problem).  But he looks unkempt and he smells and I have no doubt that when he insists he is feeling negative energy from others in their looks or manner they are actually responding to his appearance. 

    This last problem is highly triggering for me as I grew up with a dad who never washed and who, as far as I know, never ever used shampoo.  Nothing ever worked and my sister was even bullied for having a dad who "looks like a tramp."  Anything to dispel my personal fears about my son being held in the uncontrollable grip of something genetic would also help. 

    Coming back to your last question, Recombinantsocks, he no longer has any friends.  He used to be quite gregarious but then stopped inviting friends round and refused to come out when they came round for him.  Eventually, of course, they stopped coming.  He says that he was never really close to them and inside never felt he fitted in anyway.  So we are the closest people to him and he very often won't talk to us.  He has had 2 rounds of so-called psychotherapy which have served to alienate him still further and would certainly refuse to have any more.  Apparently these therapists (linked to the early intervention team and both well regarded and published) both tried to encourage him to set goals that they could work towards.  Of course, my son didn't have any goals he was prepared to share with them and, being of age, decided not to continue.  I have my thoughts about this, believing that the therapists should have gone much more slowly and worked firstly on building a rapport and promoting enegagement but, in these days of time limited interventions, this might have been too much to ask.        

Children
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