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advice needed

betty boop

Hi I have just registered today, and already have found this forum helpful and reassuring that there are other people going through the same thing. My son is 13 (soon to be 14), he struggles at school, so much so that he has refused to go back this term. He broke down on the day he was due to go. He suffers with facial twitching which gets worse everytime you mention school. His last parents evening was a bit upsetting as all the teachers said he asks unnecessary questions, acts stupid and is always putting his hand up asking the same thing over and over again. So the teachers thought that he was being disruptive to the class and just handed out detentions left right and centre.

 

Anyway to cut a long story short, he is suffering big time, we are just waiting for dates for appointments etc. The school are crap and are not helping enough or quick enough. We want some work sent home so he can do it and not get too behind.

 

Can I please ask for any advice and how long it was before people got confirmed diagnoses. Sorry I have rambled on, but we are all finding this very hard and very upsetting as I am sure you all feel the same, that you just want to help them but you feel useless.

 

from a desperate mum

 

Parents

  • All areas have different waiting lists, but invariably CAMHS (presumably that is who will be assessing him?) take many months and often much longer than the 3 months they are supposed to take between referral and assessment.

    You ought to tell the school he has special needs, he is just pending diagnosis and in the meantime, you do not expect him to get detentions, and in fact you won't allow it.  (That's what I'd do anyway).  You have legal responsibility for your son and if you refuse to allow the detention I'm pretty sure they cannot enforce it.  Tell them they are treating your son discriminatorily.

    Regarding CAMHS, hassle, hassle, hassle.  Find out who is the manager or lead clinician and make direct contact.  According to NHS NICE Guidelines they are supposed to have a named contact for parents throughout the process.  The assessment itself should take no more than 3 hours providing there are not reasons to extend it, such as uncertainty.  Don't get fobbed off with one of those "has autistic traits but not enough for a diagnosis" either, that seems to be flavour of the moment for CAMHS which is a cop-out.  It's like saying someone is a little bit pregnant.  It's a neurological difference, and it's a spectrum.  Your son is having problems at school so he has severe enough traits to warrant a diagnosis, if autism is what he has (which it sounds like some traits from what you have said).

Reply

  • All areas have different waiting lists, but invariably CAMHS (presumably that is who will be assessing him?) take many months and often much longer than the 3 months they are supposed to take between referral and assessment.

    You ought to tell the school he has special needs, he is just pending diagnosis and in the meantime, you do not expect him to get detentions, and in fact you won't allow it.  (That's what I'd do anyway).  You have legal responsibility for your son and if you refuse to allow the detention I'm pretty sure they cannot enforce it.  Tell them they are treating your son discriminatorily.

    Regarding CAMHS, hassle, hassle, hassle.  Find out who is the manager or lead clinician and make direct contact.  According to NHS NICE Guidelines they are supposed to have a named contact for parents throughout the process.  The assessment itself should take no more than 3 hours providing there are not reasons to extend it, such as uncertainty.  Don't get fobbed off with one of those "has autistic traits but not enough for a diagnosis" either, that seems to be flavour of the moment for CAMHS which is a cop-out.  It's like saying someone is a little bit pregnant.  It's a neurological difference, and it's a spectrum.  Your son is having problems at school so he has severe enough traits to warrant a diagnosis, if autism is what he has (which it sounds like some traits from what you have said).

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