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Talking through the door

Jenny Butterfly

Well, I am not even sure whether I should be posting here as we are still no further forward as regards a diagnosis and, from my perspective, our son's problems seem to straddle various labels.  But I feel desperate.  He is so alone.  No friends, no further education, nothing outside the house, very little inside the house (food and the computer). He can go for weeks without going out, then, suddenly, switches to being out from the early hours (5 or 6 am, while we are asleep) and returning mid afternoon, going straight into his room and not sayng anything.  This is what has happened for the past couple of days and I don't even know whether he has eaten. 

Communication is extremely limited and generally we have adopted an easy, person-centred approach, respecting his privacy and at the same time making it clear we support him.  He is 21, after all. 

But I find this level of isolation extremely worrying.  Moreover, we have now been in this stalemate situation for a couple of years and we're at our wits end as to what to do.  I basically read and read but learn nothing of any help and then do a lot of worrying.  None of this leads me anywhere. My gentle, tentative efforts to offer support are rejected, my attempts at basic conversation just blanked or rejected.  I sometimes resort to a couple of simple questions through the door and get monosyllabic answers. 

I don't see what parents are supposed to do and, even when we get to see a professional (the early intervention team up til now and the autism team in July - at the soonest) they don't seem able to offer any more.  Is this how life just has to be?

Parents

  • 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.

Reply

  • 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.

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