Talking through the door

Yes, I can see aspects of numerous diagnoses here, so I'm not sure even which support group to turn to (here, Rethink, Mind...)  The alarming thing is that even having the help of the early intervention team for the past 3+ years has made no difference.  I actually think they're out of their depth too and it wouldn't surprise me if the CMHT would also be.  Over time the professionals have moved from this being a "classic case" (actually said to us by a member of the crisis team) to our son being highly unusual and never having encountered a case like this before (something I suspected all along). 

In a way, I'm sorry ever to have consulted them as I think their various "interventions" might have been more damaging than anything.  I did seek counselling myself.  I think I just about got to the part where I was describing spending a small fortune on moving around the county in holiday homes that kept becoming contaminated when I could feel her disengaging and thinking, "Whoah!  I'm not going to drop my jaw here but I'm going to have to take this one to supervision!"  Of course, she couldn't help me.  

I'm currently trying to piece together a way forward for us all based on our own understanding of the problem, its probable causes and also on the ways that we have found helpful in the past (we are a family of very sensitive people and our son's problems have brought the problems associated with this into sharp relief).  Not making much headway, though, and don't know what kind of professional might be able to help or if i would even trust them.   

Hello there,

I think that his frustrations or negative feelings are with him all the time and that when I ask him anything at all I am, in effect, interrupting his efforts to cope with things or sometimes his energy clearing rituals, which it seems he can do mentally as well as sometimes involving physical exercises.  In addition to there possibly been an element of depression in this, I think there are features of OCD.  The difference is that my son is clearing mental contamination or avoiding/evading environmental contamination (emanating from his efforts to "purge" himself) and not washing his hands repeatedly.  Or at all, even:  physically he does not seem at all bothered by dirt and grease building up.  

I don't know about the duration.  There were factors which were apparent in childhood - great sensitivity, easily wounded, easily absorbed in his own world to the exclusion of all else, but the negative energy seemed to come on gradually, from around age 14/15.  Then it escalated until we couldn't live in our own home and he started sleeping rough on occasions, until we realised that he no longer had any friends and wasn't staying with them overnight, as he'd said.

"Negative energy" does seem to me to be at least very close to depression - an almost metaphorical way of looking at it?  But he won't talk about it.  He says it physically attacks him at times and that we don't and can't understand.  I've tried to gently form a bridge between his conceptualisation of the problem and ours and the closest I've come is the description of energy as emotions, or, at least, an emotional imprint or residue left in places he's been.  But no other attempts at making a link (e.g. energy clearing work, yoga, tai chi etc) have helped at all.  And I've now read a lot about the subject.  He's clear that his energy only affects him and might take a lifetime to clear.  Overall then, it's a lot of work that we don't understand and interrupting him in itself ruins his efforts to keep things clear.  I'm utterly aghast and worried about how much of his life is being taken up by this. 

Thank you.  There may be some parallels & we have been thinking that some degree of structure might help but haven't been sure exactly what would be right in our son's individual case.  We're also a bit scared as, in the past, certain rules have become flashpoints, calm discussions have escalated into arguments and our son has stormed off, not to return for hours and hours (during which time, of course, we're immensely worried).  

I'd like to do more to promote independence.  He does a little of his own shopping, manages a small budget for his home entertainments (mainly the computer) and his own washing (i.e. using the washing machine for his clothes but not washing himself, which goes neglected).  I wish he'd sit down with us and talk it through as there's probably more that would help.  

Mainly, though, he's preoccupied with the idea of negative energy and he says that he has no time for reading, studying or any other activities until this is resolved.  Since, in spite of our efforts, we don't understand this kind of energy, we can't help with this and interruptions seem to disturb his rituals and only make things worse.  Because of this, yes, he can probably get away with anything.  I hesitate to intervene when I know it could go horribly wrong.  I also often have the impression that any such intervention would be an attempt at re-parenting, rather than parenting as, of course, a decent routine around sleep, cleaning his teeth and regular meals and activities etc were all part of his life from the earliest days.  It all started to fall apart from about age 15.  Disruption at school, then dropping out of college twice, then the revelation that this was all due to "negative energy" which he felt had been plaguing him since he was born.    

I'd say that, overall, a preparation for real world living would really help him but that I don't know how to break the patterns around negative energy that seem to eclipse all else.  This also makes me wonder whether this is more likely to be psychosis than autism. 

If I looked at him as if he were any person of his age group, I would expect him to be making positive choices about his life and preparing to become more independent.  In fact he is more dependent than when he was 14.  I'm at a complete loss as to why.

I've re-read this a few times, trying to get a picture of what's going on for all of you. I was hoping to find something useful to say, but I've struggled to, and I don't like wasting time on useless chatter.

I tried remembering my own youth, to try and get a picture of where your son is now. It seems to me that the big parts of my life were that I was unrestricted (you can't tell me what to do...) and that I had ready access to those things I needed. My home was kept clean, so were my clothes, food was provided, often on demand, I could go where I wanted, and I lived in a welter of total confusion. One of the most confusing things, when I think back, was just how much my parents failed to challenge some of my more outrageous behaviour. Basically, I could 'get away with anything', so I did. I didn't know any better because there were no expectations of me that I should...

I had only the vaguest grasp of real world living, and absolutely no idea of how to fend for myself. I didn't even have any grasp of how that might be necessary. Consequently, with my first foray into the big world, I collapsed, spectactularly.

I don't know if this is right, but I wonder if some of his behaviour comes from your expectations of him? The way you speak reminds me of my own experience when you say that you are 'relaxed' and respectful of his personal space. If he doesn't do the same, but rather appears to be taking advantage of it, perhaps it's time to let him know that this is a two-way street?

 I admit that this is me struggling to be helpful, so please don't think I'm criticising your parenting, I'm more thinking that perhaps it's time to go to the next level up, and prepare him for as much functional independence as he's capable of. If you look at him as if he's 'any' person of his age, what would you expect that person to be able to do?

Naturaly, we all have different pictures of what that is, but mine would certainly be of someone who knows how to look after themselves as a grown adult. With my own kids, they were younger than that when they knew how to do those things that are necessary for self maintainance, but then I never saw them as anything other than Junior Trainee Adults, with me as their teacher until it came time for them to leave the nest.

I don't know if that gives you a different view or any new thoughts, you know your own circumstances best and I might be talking rubbish, but I felt compelled to throw something in the pot because I can see your anguish and frustration. If nothing else, I hope that sharing it has helped.

Yes, i think there is much in what you say.  It does feel as though he is more of a teenager still, not yet ready to make the transition. 

I am not sure about the household rules, although there will be things of which I'm not aware or of which I haven't become fully conscious.  We have a very relaxed household, generally speaking, but I can only guess at the possible effects of any unspoken rules or expectations.  Even then, I'm not sure how to ease off on these.  They're probably just kind of "out there."  My acknowledged worry about his reclusiveness could be interpreted as a demand that he be other than what he is, our older son's universaity life could be seen as an expectation that he also takes this route.  I can imagine, but he's not voiced anything.  

The room sharing:  our sons shared a room until they were around 15/13 and problems began to emerge.  Our younger son stopped talking to our older son (no arguments, just became more and more aloof and unfriendly) and there was a stony atmosphere.  Both wanted their own room and we reshuffled things to allow them each their privacy.  At the time I felt disappointed as I could remember enjoying sharing a room with my sister and talking together late into the night.  But I reasoned that this was part of growing up and that boys might somehow be different.  I now know it was more than that.  

The computer:  Any suggestion of any rules has tended to backfire badly on us.  I recently had trouble getting my son to sleep in his own room, instead of in an armchair or on the floor and, although I started off gently, this resulted in an argument, following which he took all his money and left the house to escape the "negative energy", being brought back by the police a day or so later.  The computer started off downstairs with various rules attached but, over the years, we have been ground down as this also seemed to become a major issue and flashpoint.  He now just moves the computer into whichever room he's sleeping, something which varies depending upon the negative energy and where he perceives it to be worst.  I think it is fair to say that we are treading on eggshells and I fear raising the subject (if he would even talk to me, that is).

I probably need to have a closer look at any unspoken rules, though.  These will probably have built up over time and become less obvious to me but, as with all families, they will surely be there.  I wonder whether the things we say, however gentle, are contradicted by the weight of "energy" that has built up over the years?  this could prove very hard to undo.  There are also, no doubt, negative energies created by my husband's severe depression and my own reactions to a chronic physical illness.  These will be swirling around too and we couldn't pretend otherwise.  To be honest, I was hoping my son would be able to find more outside the home in order to dilute the effects of what's going on inside.  This looks increasingly unlikely, although we have made it clear that we would support him in whatever he wanted (i.e. with the proviso that it's safe, whatever takes his interest or gives him pleasure and not necessarily the conventional paths through life which, in our experience, have been grossly over-rated).

Part of the problem, I suspect, is standard teenager. Families develop rules that they aren't usually conscious of, and teenagers trying to find their own identity, rebel. That's how most of them 'leave the nest'.

What has this got to do with your son? He is 21, he's not going anywhere, certainly not 'finding his own feet'/'leaving the nest'

But, while it may not be in the generally available literature, people on the spectrum experience delayed maturity, perhaps occurring in little jolts, nowhere fast enough. He could still be a teenager at 25 - and with understanding of 'transition' coming so late in the day, the 'professionals' still haven't grasped the full implications.

So for him the only place to go is deeper and deeper into his bedroom

Which is a modern phenomena. I shared a bedroom with my brother. Go back a couple of generations and a lot of siblings shared the same bedroom, and even the same bed, sleeping in opposite directions. When was "own bedroom" first invented?

I wonder if one way round this is to rule that a bedroom is for sleeping in, and that workstation/computer be carried out in a downstairs room. Allowing a private room to retreat into, almost as a manifestation of self, might be where we are going wrong with young people on the spectrum.

I'm cynical, but I don't imagine the intervention team have a clue about this. Having been on a consultation with social workers, deeper understanding of autism behaviours is too new for most practitioners, who probably apply grown up at 18/21.

That said it is important to stress what being alone and having no friends is all about. If you cannot engage socially with sufficient skill to fit in with your peer group, you don't get to fit in at all. You get ostracised, verbally abused and ridiculed, if not bullied.

For a lot of people on the spectrum, being alone and away from your peer group is bliss. Trouble is it sets up a pattern for life.

And let's face it the peer group seems worse than any teenagers even in the punk or flower power eras. They are quite self important, downright vicious at times, and act like a mob - try being an adult walking the opposite way when nearby schools are coming out. I suspect he's not missing anything beneficial.

But you are right to be concerned. Just think to what extent your established rules are claustrophobic (for someone not ready to be independent). Think what kind of friends you are expecting him to make. Think what college might be like after school, where you probably 'don't know the half of' what went on.