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11yr old son without any diagnosis and we are getting nowher - Carers UK Forum

11yr old son without any diagnosis and we are getting nowher

For issues specific to autism / Asperger Syndrome.
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My son is 11yrs old and is to start high school in September. He has not accessed full education for 4 years. At the end of every school holiday he is always awake crying with stomach pains/pains in his legs; this has been looked at and nothing physical found. On the occasions he has attended school he has mostly sat in the reception area with his head down and hair covering his face. He had a short period where at playtime whilst the other children were outside he would settle into the classroom and stay there when the other children came in and do maths lessons althouvh it didnt last long. He has now reverted to not going to school at all, sitting behind his bedroom door so i cant get in, he even sleeps on the floor rather than his bed. CAMHS sent an email to school saying he has social anxiety and his need isnt high enough for them to work with him. He has said he wants to die on numerous occasions. Step2 said they would offer therapy but i then found out thwy had nobody to provide this, though it wasnt Step2 who informed me of this. CDC did an EHCP assessment which i had to attend alone as my son sat behind his bedroom door refusing to go and crying. At this appointment i was informed that the referral they had to work with my son was rejected. During this assessment the Dr said that my sons social anxiety and anger issues (he has hit me and his older brother and also caused a lot of damage in the house) would have to be looked at before anything else but as i had responded with yes he has good days when asked i was told he does not have ASD, as there are no good days. Im not even sure of what a good day iais for the 'norm'. I was told tgat when he had therapy if it did not work get the dr to rerefer to CAMHS and he would need to see a psychiatrist but that CAMHS wont work with him whilst he is on the books of Step2. Step2 are now not providing therapy but he is apparently on a waiting list to be seen by them therefore he cannot be rereferred to CAMHS. We seem to constantly hit brick walls and go round in circles. I moved 2 years ago for work after being tld by a professional he would be fine and to just allow him time to settle and adjustbut had to resign to look after my son. My son doesnt engage with any other children and a very small number of adults on good days, i spend everyday in the house trying to coax him out of his room and go to school, he only leaves his room now and for the past few weeks to eat and drink with the occasional hour or so he might stay down extra to chat before disappearing to his room. Childrens services are not supporting us as there are no safeguarding issues but if he gets a diagnosis disabled childrens services can support us so i was told. We cant have a carers assessment as he has no diagnosis as far as im aware. I dont know how to move forward from this point. I did email the local mp explaining all this a couple of days ago in the hope of pushing something but as yet i have heard nothing :-???
Have you heard of IPSEA. Google them. Really helpful when I had difficulties with education for my son, who has learning difficulties. You do NOT have to have a diagnosis for a Carers Assessment or a Needs Assessment from Social Services. Insist the LA does one, as caring is having a significant effect on your life.
Thanks this is great. I will look at IPSEA and contact the LA. Maybe there is a way forward. Your reply is greatly appreciated x
May I suggest something that, sadly, may not be financially possible. BUT, if it is, and it's possible to afford it, I'm wondering whether you could break this ridiculously bad vicious cycle by seeing a psychiatrist for your son privately? Your GP may be willing to make a private referral to a suitable psychiatrist. With a 'private' diagnosis, that may enable the GP/psychiatrist to 'force' your son into the NHS mental care system, and get round the road blocks in your way.

I'm not sure how much a private consultation with a psychiatrist would cost - I do know that to see a consultant for some aspect of physical health (eg, a cardiologist), it costs something like between £150-200. I know that's a huge amount but, like I say, if it's affordable at all, it might be a way to 'break the logjam' and get your son the help both he and you so obviously need now.

With very best wishes at such a worrying time. kind regards, Jenny

PS - MANY apologies if this is completely inappropriate and impossible, but I'm wondering whether, even if your son is not able to face school, or cope with it, whether you can do some Home Education with him in the meantime, so that his schoolwork does not suffer too much? I'm not sure if your son is willing to do any such schoolwork with you? Even if you are not following the official curriculum, there are lots of books available both in the bookshops, and cheaply in charity shops (and free in libraries) for all sorts of subjects, like history and geography (maths if you can cope with it!). I would say that it doesn't matter so much WHAT he is learning, so long as he's learning something. If he has any particular interests (other than, say, playing shoot-em-up computer games!!!!), then follow that maybe, to get him engaged? Many apologies if his state is such that any form of learning is impossible for him for now. I just sort of feel that 'anything is better than nothing' at this tricky stage where he seems to be 'betwixt and between' standard education and what, hopefully, will be sorted out for him once his 'treatment and management' plan has been (finally!) slotted into place for him.
jeanette_1604 wrote:My son is 11yrs old and is to start high school in September. He has not accessed full education for 4 years. At the end of every school holiday he is always awake crying with stomach pains/pains in his legs; this has been looked at and nothing physical found. On the occasions he has attended school he has mostly sat in the reception area with his head down and hair covering his face. He had a short period where at playtime whilst the other children were outside he would settle into the classroom and stay there when the other children came in and do maths lessons althouvh it didnt last long. He has now reverted to not going to school at all, sitting behind his bedroom door so i cant get in, he even sleeps on the floor rather than his bed. CAMHS sent an email to school saying he has social anxiety and his need isnt high enough for them to work with him. He has said he wants to die on numerous occasions. Step2 said they would offer therapy but i then found out thwy had nobody to provide this, though it wasnt Step2 who informed me of this. CDC did an EHCP assessment which i had to attend alone as my son sat behind his bedroom door refusing to go and crying. At this appointment i was informed that the referral they had to work with my son was rejected. During this assessment the Dr said that my sons social anxiety and anger issues (he has hit me and his older brother and also caused a lot of damage in the house) would have to be looked at before anything else but as i had responded with yes he has good days when asked i was told he does not have ASD, as there are no good days. Im not even sure of what a good day iais for the 'norm'. I was told tgat when he had therapy if it did not work get the dr to rerefer to CAMHS and he would need to see a psychiatrist but that CAMHS wont work with him whilst he is on the books of Step2. Step2 are now not providing therapy but he is apparently on a waiting list to be seen by them therefore he cannot be rereferred to CAMHS. We seem to constantly hit brick walls and go round in circles. I moved 2 years ago for work after being tld by a professional he would be fine and to just allow him time to settle and adjustbut had to resign to look after my son. My son doesnt engage with any other children and a very small number of adults on good days, i spend everyday in the house trying to coax him out of his room and go to school, he only leaves his room now and for the past few weeks to eat and drink with the occasional hour or so he might stay down extra to chat before disappearing to his room. Childrens services are not supporting us as there are no safeguarding issues but if he gets a diagnosis disabled childrens services can support us so i was told. We cant have a carers assessment as he has no diagnosis as far as im aware. I dont know how to move forward from this point. I did email the local mp explaining all this a couple of days ago in the hope of pushing something but as yet i have heard nothing :-???
Hi Jeanette
Try this link ..
http://www.social-anxiety.org.uk Lots of useful information.

Have you heard of the Speakmans? I've seen them on this morning program many times. They have helped many people. I not sure if they work with children. Its worth thinking about it.
http://www.speakman.tv/#!/page_home

Sometime we have to try as many avenues as possible.
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