What happens now? Recent diagnosis. Lots of questions!

[usernametaken]

DD has just been dx with Aspergers; it wasn't unexpected, yet it is still a bit of a shock. She was assessed as exceptionally high functioning (think 99.99+% IQ) as well.
We had her seen by a private Psychologist after a horrible experience with our local CAMHs a few years ago. We have a week to wait for the full report, but in the meantime, I'm just looking at where do we go from here.
As we had the assessment done privately, what do we next? School are unaware that we've had her assessed, do we need to go back into CAMHs because or what? DD is crying out for some help (as are we).
Do Asperger children have IEPs at school, how does one go about this?
Are there any recommended books to read or websites to visit to gain more information?
Many thanks.

Hi, I'm guessing from your post (that you saw CAMHS a few years ago) that your DD is older? DS was dx-ed with severe AS when he was 8. The school were aware he had issues but had just put him down as being hyper sensitive as he didn't fit with their idea of an AS child ie. he really keeps the rules and therefore wasn't getting in trouble per se so wasn't AS. Anyhow, I digress. The first question asked was "It is a proper dx isn't it, not from a private quack", so just be aware that you may get a similar response!
In fairness the school were already doing quite a lot for DS - his teacher was great at coxing him out from under tables where he hid when anything changed in the school day for example, but I was aware that all his needs weren't really being addressed. It took about a year of 'fighting' (fairly low key nudges to both his teacher and the head - I'm a governor, so see them regularly) to get them to agree firstly him being seen by the Ed Psych and then the Ed Psych pushed them, to actually put him on the SEN register with an IBP - an individual behaviour plan. He doesn't need an IEP apparently as his academic work is fine - that is a current 'battle' as I don't think he is making the expected amount of progress, but his teacher is new to the school so is having to research him and his previous grades. His IBP is specifically to help with things like him not always understanding instructions, what to do if he gets anxious in different situations etc.
Tony Attwood has written some good books. I think the one I read was called the Complete Guide to Aspergers. In terms of explaining the dx to DS I used Can I tell you about Asperger Syndrome on an occasion when he was particularly down about not fitting in.
Oh, and one last thing, when we got the dx from the NHS they made it very clear that they make the dx but don't provide any further help/services after that time.

She's just turned 7.
Thank you for the books and information, off to amazon now!

Cerebra library will lend you books for free - you send them back free post.

You should look at SEN Code of Practice and SEN toolkit. Yes should have an IEP even if only for social / behaviour - does not have to be academic targets

NAS and contact a family websites useful for finding out about entitlements etc

What sort of things are you struggling with?

Hi username

Welcome to MNSN :) How are you feeling about the diagnosis yourself? It sounds like you have been pushing for some years to get it. Even when you have been trying to get the dx for a long time it can still hit you hard to actually hear someone say the words.

My DS is 7 next month and he has recently got dxed too. This is one of the best places to get info from apart from the books like Tony Attwood. Whatever question or random situation you have, someone will be there to answer you and guide you.

Here have a . Take care of yourself. It is a rough ride but now to get the school to support which I know is difficult....

Are you under a NHS Paed? or go back to CAMHS. Whichever you get back into, quickest. Present your private diagnosis to the NHS paed/ CAMHS and thus get an NHS diagnosis.
It just seems that, sadly, NHS diagnosis carries so much more weight, than a private one.

It just seems that, sadly, NHS diagnosis carries so much more weight, than a private one.

It may do with LAs but it should not and I would definitelty take to task anyone who told me it was less valid than private.

If a private NHS diagnostician was described to me as a 'quack' one I would have absolutely no qualms about reporting the idiot who said that.

Our private dx was a damned sight more comprehensive than the NHS one.

The first thing you need to do is wait for the report, and then make an appointment with the senco to go through it.

Think about what help or support she is currently from school (do they have iep in place etc, are the targets appropriate) and compare that with the difficulties she is having in school, and her support needs. Ie small group social support if she is struggling with friendships etc/ work on routines and any sensory issues she may have.

It is also worth asking about an iep for her gifted stuff. Some schools will, some won't, but it isn't unusual to have two Ieps running, one for difficulties, and one for extension work.

You might also find it helpful to have a read around 'twice exceptional' children. Some info on the hoagies website, and also nagc website. Some people also like to read 'misdiagnosis and dual diagnosis of gifted children' if they are interested in 2e.