Son has refused the assessment

Hello again and thank you so much for your detailed and thoughtful responses.  I feel sad and cautiously optimistic at the same time.  As far as groups are concerned, I can't immediately see one for parents/carers of over 18s but I'm tired now and will have a proper look tomorrow.  There might not be much as I live in Durham, but the autism team might be able to advise me as well.  I'm still hoping that, after they've read through our son's file (now a substantial size) they'll be able to give me more specific advice too on how to support him, even if he continues to refuse to see them.  As it turns out, they wouldn't be able to see him for the next appointment until next July at the soonest, so, although this is really a ridiculous wait, especially as we already waited 9 months for this last appointment, this does at least give us time to ease off and to hope that our son changes his mind.     

The sadness I feel is mainly because of the lack of knowledge about autism in our family up until now.  With more understanding and support, perhaps some of the conflicts and setbacks my dad went through might have been avoided or made easier.  He died earlier this year and so, although he had, for the main part, a happy life, it's too late.  And many of the conflicts and difficulties I've experienced myself seem to make more sense when looked at through the lens of autism.  I'm not saying that it all definitely relates to autism, but in our family, we just seem to have different strengths and weaknesses from others and this has led to interpersonal problems and other difficulties too.  Plus a sense of feeling apart.  I'm hoping I can help to make a difference for my son. 

I'm off to bed now but you have given me some food for thought.  And I still have some reading to do (only just a couple of chapters in to the Dummies book, for example).  I like the Zen idea very much and feel a need to make it OK to be an alien (an expression which I've often used of myself, especially in work environments, and which seems to come up quite often on this site).

thanks again

J

You were looking for recommendations for other books. Have you come across Tony Attwood's complete guide to Aspergers? It has a lot of examples and it is a much more comprehensive learned/academic book than the books I recommended earlier. I suspect that it might provide more of the insight into the mind of a sufferer that would help you understand the problem from your son's point of view. 

As Longman says, finding a local NAS group may be useful for you. You may get an picture of how other sufferers present to their families and how they deal with it.

When I was diagnosed I was told that the impact of the disorder is highly determined by the environment you find yourself in. Fixing the environment may be the key to bringing him out of his shell. 

It sounds as though your father might have passed the genes to you. :-( He sounds unconventional and perhaps that some of his behaviour is showing up in your son. There must be no blame attached in this situation, we don't choose our genes. There is no benefit in being angry about it. You are naturally concerned for your son but you can't react to that situation by putting pressure or expectations on him that he can't meet. I am a father and I fear for how my children will turn out but I recognise that they have to find things out for themselves. I also recognise that I didn't always respond appropriately to my parents' expectations or the pressure that they applied to me. In hindsight, my mother brought me up whilst my father who had all of the traits, didn't interfere too much so it turned out relatively well. I only had to get a diagnosis when I found myself in a toxic work environment after surviving fairly well in adult life.

You are reacting to him blanking you. ASD implies poor social skills and he may well avoid eye contact and avoid confrontations and simply avoid you to reduce the discomfort that arises when he finds that, yet again, he fails to do what you hope he will do. I avoid discussions sometimes as I know that I won't be able to defend myself and it feels that I am on the losing side of many arguments. Eye contact can be baffling and gives no benefit to someone with ASD.

To me, having ASD is not a disease that needs to be treated. Instead it is a factor that I have take into account in lots of situations. It needs a "Zen and the art of being ASD" way of life in which I take control of the things I let myself react to and I control the situations that I expose myself to.

I have had the consequential mental health problems of depression and anxieties but I got my diagnosis of ASD before I went near the MH system. I have always had a phobia for hospitals and particularly the MH system as I saw that it did no good for my father. They didn't recognise the ASD (it wasn't recognised then) and instead tried to treat with drugs. None of it worked and the resulting continuing depression and issues had a serious impact on his life. Having seen local MH specialists for autism I am now much more comfortable with consulting them if or when the need arises. Getting your son to this point of being able to trust them may be difficult but there are people out there who really can help. Now that I have a diagnosis, I am much less prone to MH issues but it is still stressful living on the "wrong planet".

Is there a parents' group or a NAS local group for parents near you? The pink and red map on the Home and Community pages of the NAS website should help you find out (though they tend to be londoncentric in that London services come up top of a listand you have to scroll down a bit to find your area).

It seems to me you need a local supportive resource where you can get information and advice and chat socially with other parents about how to resolve issues.

While you can do that to a certain extent through this forum, it has current themes up front, and previously well trodden ground is 'history' for which you have to search. A resource where you can meet other parents and exchange notes on strategies might help.

If the NAS search facility doesn't come up with a local one, contact the nearest. They may know of a resource that hasn't made it into the NAS directory that is nearer you.

The hygiene and personal care thing is widely discussed but seems to lack much attempt to address it in books. As I've indicated it is composed of two factors - central coherence and sensitivity to water, soaps, hair cutting etc. In the former case there isn't the same motivation to wash and take care of yourself or even eat, and if absorbed in something more interesting, many people on the spectrum seem to forget all about eating.

It isn't just about choice - shower or bath, different textured towels, or type of shampoo. It isn't being faddish or fussy. It is about the sensations, which may be heightened way above what you can imagine if not affected.

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.        

Do you have any better understanding of negative energy? Could it simply mean negative thoughts?

One problem for people with autism is spiralling anxiety due to the effects of "negative reinforcement" - basically building up a sense of all the bad things happening.

Because of lack of social referencing, people on the spectrum don't get the kind of feedback that would help resolve or dissipate anxieties. They tend to dwell on things and go over and over them. This need for analysis leads to a propensity for excessive analysis.

It also leads to anticipation of the worst case scenarios - what if.... These accumulate and "negatively reinforce" each other, building up the anxiety - "spiralling anxiety".

To him these negatives could be what he refers to as energy taking over his thoughts.

There are ways round this. Writing things down gets them out of your head onto paper, where you know you can find them if you want to. But also writing things down helps to visualise what outcomes are likely, and which outcomes may never happen.

It helps too to talk to someone who can help reduce the anxieties by resolving some of them - but it usually needs to be someone in your peer group who can find the explanations - and that's usually not easy - back to lack of social referencing again.

Another solution is to try to interrupt the flow of negative thoughts - usually doing something that hurts enough to interrupt such thoughts, flicking fingers, flicking your ear, snapping a rubber band against the inside of your wrist - a relatively harmless sudden action distracts the mind. With practice that can be replaced with a stop word or phrase that breaks the train of thought.

I'd mentioned on the previous thread, Luke Jackson's Freaks, Geeks and Asperger Syndrome. Page 92 his remedy is to write the negative thoughts on paper then throw the paper away. Also just writing it down until it shifts the anger.  Weird though the mix of adolescent ideas in this book, which might make parents look on it suspiciously, it seems relevant to that age group.

Longman's post prompted me to go back and read your earlier posts. your son's behaviour is typical of some of the other posters on the forum who go into reclusive states as they are unable to cope with the world. He is incoherent in attempting to explain himself, talks about negative energy is a way that makes no sense to you but that doesn't make him mad. It'll make him infuriating to deal with and it won't make sense to you but it soesn't necessarily mean much.

How did you get on with the Dummies book? Did it resonate with your own experience or with your son's behaviour?

Perhaps it might benefit your relations with him if you took your other books about psychiatry out of the house. It sounds like he isn't thriving in the current atmosphere - perhaps he might respond to a change of approach? Are there any other family members or friends that he relates to at all?

There are two aspects of autism not explained by the Triad of Impairments, because they aren't good for differentiating autism from other causes. They are social interaction and sensory issues.

Autism involves difficulty reading facial expression and body language and difficulty generating such information. Most socialisation is informal and relies heavily on facial expression and body language to provide an accent to speech.

Therefore someone on the spectrum has to work hard to keep up with social dialogue, and that is quickly tiring. It often involves guessing how the conversation is progressing and frequently losing the thread. As they get tired they feel more and more out of it. Therefore many people on the spectrum give up trying to integrate socially, even thiough that deprives them of the feedback and reassurances you get from social referencing.

Because teenagers go so heavily into informal sociailsation about the most ridiculous topics, teenagers with autism often do retreat into themselves. You may feel it is unhealthy, but if he cannot do it properly, finds it tiring and disorientating, trying to force him to do it, when it causes him distress, just because it is normal for you, seems demented. It it really that important he socialises? 

People on the spectrum are often more sensitive to sound and visual stimuli. Therefore many social environments are uncomfortable for that as well. Teenage socialisation is usually in a room with a television or radio on loud, and everyone talking at once. That's agonising for many people with autism.

Most of what you describe is normal for autism. He may, if given the right encouragement, open up a bit more. But subjecting him to being probed by various people is clearly not helping.

The hygiene and self care issues are often to do with poor executive function. A timetable with some associated novelty to make it more interesting might provide prompts to bathe more often etc. Another factor is that water can be uncomfortable for some people on the spectrum for sensory reasons, as can hair cutting. But that can be explored in simpler ways than treating him like an alien and having him studied by mad scientists.

Recalling an earlier thread, I'm still not sure why you feel the only solution is more complete strangers probing his mind.

I'm reminded of something that occurred with a number of students over the years I was involved in supporting disabled students. Every now and then a student would not make contact with student services, even though we knew from the UCAS form that autism had been indicated in the disability code.Therefore other than UCAS, which is not deemed sufficient, we couldn't take account of disability.

Invariably the students did so because they were fed up with being analysed and probed by strangers, as if they really had arrived from another planet, and would rather cope on their own, even if that left them disadvantagwed and without the support to which they were entitled. Despite explaining there would be hardly any such intervention in a university context, it was usually impossible to persuade them otherwise.

It amazes me that science fiction confronts us with moral dilemmas about aliens coming to the planet being carted into laboratories for endless tests rather than trying to communicate in some more normal way, stirring feels we wouldn't like it. But that's what it is like to be a teenager growing up with autism - constant exposure to being a laboratory animal.

I think you need to reflect on what it is you are trying to achieve, Because what you are describing is normal for lots of teenagers on the spectrum, and most parents are coping in other ways.

The relationship with services has been getting worse and worse.  it was never good and no progress has been made over the past 3 years.  I think that he doesn't trust anyone now, after so many false starts, things they said would work but didn't, meds he's been forced to take (under threat of hospitalisation).  I don't think he'll see anyone.   His plan, although he will say it's none of our business, is to continue clearing what he calls "negative energy" in his own ways.  Apparently we don't understand it so can't advise and it's not the sort of energy you might see written about in books on yoga or tai chi, so we can't use that to build a bridge to him either.  He also says that this process might take his whole life and that that's just the way it is. 

I feel devastated.  We've tried everything and now it seems we just have to continue supporting him and waiting for him to change.  The CPN and autism team are thinking about it and say they'll get back to me with ideas for help, but what's the betting this'll all amount to stuff I could ust google and read about myself.  I hope they are able to offer some real, solid, expert advice but, after seeing so many consultants, I have my doubts. 

Would he cope better with meeting a more neutral person such as someone from Mind?

How does the CPN and autism team think that progress can be made?

Would he accept an advocate who would speak on his behalf?

Does he have a plan for what he wants to do next?