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First CAMHS appointment - how do I get them to listen?

bertieh

Hi  - first time posting, so here goes.

After some battling, we finally have an appointment to be seen by our local CAMHS next week.  My nearly 8 yr old son (year 3) was referred asking for as ASD diagnosis initially, but this has been refused and instead we have a 'generic' assessment meeting.  I am not happy with this, but at least we have an appointment.  The letter says it is a CHOICE appointment. Does anyone have any experience of one of these and what to expect?  Do I need to coach my son into saying the right things so that we don't get dismissed?  He may very well not present as having difficulties in one half an hour meeting and he will be scared about the whole thing.

My son was referred to CAMHS as a toddler for very poor sleep and anxiety issues but after just one session, he was discharged.  I know what CAMHS is like and everyone I have spoken to about it has only negative things to say.  I know I will need to fight to not be fobbed off.

I desperately want an ASD assessment for my son - not because I want a label or because I want there to be something wrong, but because I want to help him and give him an equal chance.  He has very calmly talked about killing himself and has punched through a window.  He is academically bright and does not have disuptive behaviour at school, although he does have an IEP for his dyslexia and the school are supportive in pursuing an ASD assessement.  I am not making this up!

I am so worried about fluffing up the appointment and either not saying enough , saying too much, being too aggressive, not being assertive enough.  I know that the only way my son will get any help is through me, and if they just dismiss me as a neurotic mum (as they did last time) I won't be helping him, or my family.  I am so scared about being sent away with yet another photocopied sheet about fing reward charts.

Any advice is greatly appreciated.  Should I go all guns blazing or assume that these people actually remember some of their training and will actually want to help?  Thank you.

Parents

  • Thanks for your replies.   In terms of family history, there is no one that has been diagnosed and no one in the immediate family that is quite like Frankie.  Him and his dad can be quite similar in some respects, but then my husband suffered a trauma at the age of 9  (a stroke during open heart surgery) which has resulted in some coordination difficulties at times, when he's tired etc.  In any case, we have a child who has difficulties and we have to try to help him.

    Of course I don't want to have to coach my son into anything - but it precisely for the reason you say - that you have come away from CAMHS with nothing concrete - that I want to make the most of any meetings we have with them.  I don't feel that a parenting course will ultimately help children with ASD become adults with ASD that have the skills and abilities to have an equal chance as others.  It's the child that has to live with their difficulties every day for the rest of their lives, not us parents.  It is not parenting skills that will miraculously 'cure' the child with ASD to make them function 'neuro typically' or 'normally' - they will still have the difficulties they have.  No doubt parenting courses to offer strategies to manage and cope at home are very helpful, but I would rather they complemented a conclusive diagnosis, rather than be the limit of the help given.

    My son is not at the totally inward facing end of Autism - he can respond when people speak to him and he doesn't like talking about aspects of his personality that embarass him - such as still wetting the bed, not being able to make it to the loo in time during the day, sensory issues such as sensitivity to some clothes, certain sounds, smells.  He knows he is different and is ashamed of it, hence he does not want to talk about it with strangers who he fears will laugh at him and judge him.  Which let's face it, is what the doctors are doing.  They need to make their professional judjement, but there's only half an hour to convince them of a whole lifetime of issues.

    I know the waiting lists are long, the needs are great and the pressures to cut costs everywhere is leading to treatment for only the most severe of cases.  But it doesn't make my son or any other child that is denied the chance of a proper diagnostic assessment not have ASD.   

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  • Thanks for your replies.   In terms of family history, there is no one that has been diagnosed and no one in the immediate family that is quite like Frankie.  Him and his dad can be quite similar in some respects, but then my husband suffered a trauma at the age of 9  (a stroke during open heart surgery) which has resulted in some coordination difficulties at times, when he's tired etc.  In any case, we have a child who has difficulties and we have to try to help him.

    Of course I don't want to have to coach my son into anything - but it precisely for the reason you say - that you have come away from CAMHS with nothing concrete - that I want to make the most of any meetings we have with them.  I don't feel that a parenting course will ultimately help children with ASD become adults with ASD that have the skills and abilities to have an equal chance as others.  It's the child that has to live with their difficulties every day for the rest of their lives, not us parents.  It is not parenting skills that will miraculously 'cure' the child with ASD to make them function 'neuro typically' or 'normally' - they will still have the difficulties they have.  No doubt parenting courses to offer strategies to manage and cope at home are very helpful, but I would rather they complemented a conclusive diagnosis, rather than be the limit of the help given.

    My son is not at the totally inward facing end of Autism - he can respond when people speak to him and he doesn't like talking about aspects of his personality that embarass him - such as still wetting the bed, not being able to make it to the loo in time during the day, sensory issues such as sensitivity to some clothes, certain sounds, smells.  He knows he is different and is ashamed of it, hence he does not want to talk about it with strangers who he fears will laugh at him and judge him.  Which let's face it, is what the doctors are doing.  They need to make their professional judjement, but there's only half an hour to convince them of a whole lifetime of issues.

    I know the waiting lists are long, the needs are great and the pressures to cut costs everywhere is leading to treatment for only the most severe of cases.  But it doesn't make my son or any other child that is denied the chance of a proper diagnostic assessment not have ASD.   

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