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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

  • 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.

Reply

  • 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.

Children
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