Any advice for assessment? :)

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Hi, my DD5 is still undiagnosed but we are getting very close now. We have been round in circles for the last 18 months due to useless Drs not knowing who does what. So finally we have an appointment for an assessment with the right people who are actually qualified and able to diagnose and are willing to see her. So far we have seen, health visitor, school nurse, GP, CAMHS, family support worker and 2 Paediatricians in Child Development and they have passed us back and forth giving a verbal diagnosis and each claiming they cant officially dx themselves so passed us on, but not really knowing who can make a dx so sending us down a blind alley every time. I have had to read up on all possibilities and basically come to a conclusion of dx myself, then I figured out who can dx and how to get an appointment with them, which wasnt easy as we had to go through half of those useless people again to get referred Its taken so long because it takes months for each appointment and letter to come through. We see different Drs each time and while most agree, some just fob us off with an idiots guide to parenting "naughty toddlers" which I took on board politely, but is totally irrelevant to our situation, all stuff Ive tried before (using my own common sense!) but which fails because she is so clearly autistic.

So in a weeks time we have an assessment and also the LEA Senco are visiting her at school and will give us a write up to take to the assessment with us!

Any advice about what they might ask, what they will look for, the format of the meeting? Im in the UK by the way. Is there anythign we can ask/take with us/do to make it go smoothly?

Thanks

No advice as I am in the same situation. Just a hug and good luck!

Thanks for the virtual *hugs*, muchly needed and appreciated

Yes I agree about the girl thing! Her 'symptoms' are less obvious and shes great at hiding it right up until she gets home, then explodes. Its like Im working against the very people who are supposed to be there to help! I honeslty felt like they didnt want to listen at some appointments, they might aswell have been doodling pictures of cats while I talked. Its as though they have a limited number of places in the world of ASD and its a very exclusive club that they dont let just anybody in, they make me feel like Im pushing for this because I want an excuse for having badly raised a difficult child, but the problems are all hers not mine, I want help for her not me, shes clearly having a hard time just being in this world and no one wants to watch their little girl go through that, I want to help her. Half my family have turned against me because they are in denial and I really dont think I would be doing all of this if there wasnt something in it

The NHS is great and I dont want to knock it but it does have its problems I have gathered absolutely everything I can think of, her new school have been great and are on the case, totally on our side. Ive been through so many GPs and found a good one that Im sticking with. Ive cut out any of the Drs that have been useless and found different ones, just been through a lot to find them! I have reems of notes on behaviours, problems, along with "normal" parenting things we have tried that have failed to work because its not a typical problem. I have asked her school and the childminder she had when she was 2-4 to write a short letter detailing the problems they witnessed. I will have the LEA Senco report in hand too when I go there. I really hope this next appointment is the one to actually give me something back instead of me sitting there pouring my heart out while they nod and take notes then tell me nothing in reply, only to send a letter sumarising everything they think I said and getting it all wrong.

I worry coz Ive obsessed so much about this that its actually my problem and my family/friends are right, shes probably just very bright and old headed, but deep down I know she is not only very bright and wonderful and caring but HFA. Its weird though, I tried so hard not to steer Drs down a certain route, I just gave them the facts and wanted them to give me their own answer, but they want me to do all the hard work and them to just sign it off at the end of it, if indeed they will agree, grrrrr. Sorry ranting now!

Thanks for the replies Will be posting after the appointments with the verdicts, ASD or just a normal girl with a neurotic mother lol! Sure I will be in floods of tears either way I expect!

I don't know how things work in the UK, but I would say this about any assessment: write a list of your concerns and bring it with you. Anything that strikes you as being different, odd, strange, unusual in as much detail as you can provide while still being factual and emotionally detached.

Then make a different list about stuff that worries you, that you can't be emotionally detached about. Bring and show them both.

Ok thanks, I have loads of notes, I think I need to sort them out and seperate them into the 'triad of imparements' they look at and make them a bit more concise.