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Diagnosis process for my daughter

NAS51251

Hi, I'm sorry if this has been asked before but wondering if anyone can give me some advice please.

My 8yr old daughter has been under the community paediatrics for 2 years now after being referred by the Senco at school, we feel that she shows many traits and symptoms of ASD or Aspergers with some sensory issues (mainly touch and hearing)

It has been a very long process as I am sure so many of you are aware but after our last appointment in Nov myself and the school were given more ASD questionnaires with a view to me having a telephone consultation 4-6 weeks later regarding the results. This never happened so after I chased the paediatric centre I was informed that my daughter is now going to be having a 'Joint ASD' appointment in the first week of March which should last for around 1.5hrs. 

Can anyone tell me what this 'Joint ASD' means exactly and in your experiences do you think maybe I am finally getting closer to an answer so that we can get the help my daughter needs?

  • in reply to NAS51251

    Sorry to hear that counselling hasn't worked for your daughter, it didn't really help mine either she approached it like a school project she knew how she was supposed to feel so gave the answers they wanted. Then had a meltdown at home because that's not how she thinks and feels! 

    I to have to physically dress mine as she refuses to go to school but once she is there she switches on her school face (that's what we call it) she has a set idea of how you must act and behave in school so that's what she does, despite it really upsetting her. 

    School didn't refer to peadiatrics as they had already seen her and agreed that there was no physical reason for her sleep problems and repetitive behaviour so cdc should have seen her, in our area gp referral to cdc is the quickest way but gp didn't do it, school tried but cdc rejected it, now she is 8 gp is pushing camhs so fingers crossed. 

    It is heartbreaking watching them struggle at least my daughter can come find me at school ( I work support at lunchtime) so at least she is not always alone. 

  • in reply to NAS39248

    Thank you for your reply, hopefully we may finally be getting somewhere. 

    The Senco has tried a few things but nothing seems to have helped, she has been referred to Camhs, had counselling, the main concern is the social aspect and it causes her a great deal of anxiety, they have tried a number of things to help but it's getting worse, her self esteem is so low now and I have a struggle to get her ready for school daily, dressing her multiple times for her to have meltdowns over the clothing. 

    Has your daughters school not referred her directly to paediatricians? We didn't go through the GP, the school dealt with it all... perhaps that's an option for you and it will be quicker for you? 

    It's so difficult and disheartening when all we want is the necessary help for our babies, I really hope that you are finally on that road now. 

  • It is probably for a multi disciplinary assessment, this should be one of the final stages, unfortunately the whole process is very lengthy

    As for support you mentioned that her school senco was involved have they started to make adjustments in school already for her? 

    My daughter is also 8 and we have been trying to get her assessed since she was 4. Peadiatrics agreed she needed assessment asked gp to send referral to reduce the waiting time, but gp didn't bother so we waited nearly 2 years for a referral that was never sent. Senco got school nursing team involved who got camhs to come out and see her they agreed that she needed assessment so sent it to cdc we were all asked for more information and really thought we were getting somewhere, but cdc rejected us due to the wording on her referral letter and the fact she has a friend and can hold a conversation. Process started again this this time with family support worker to document all concerns and the impact on the other children. All this time my daughter is only sleeping 3 hours a night despite multiple visits to gp no help. I started her on melatonin (not knowing that it was not allowed in the UK ) and school nurse reported me to doctors for endangering my daughter! Demanded I took daughter back to gp luckily the senior gp I saw did not have the reaction the school nurse was expecting! She was horrified at how we had been passed about and has personally taken over daughters referral so might get somewhere now! 

    Luckily during this school have been fantastic and have implemented systems to help my daughter which has been great