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  He's mucky, withdrawn and spends all day in ritualistic behaviours to avoid "negative energy" or else on his computer.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
  • 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

Reply
  • 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

Children
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