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Nervous about assessment
  • HannahH29
    Posts: 48
    Hi all,

    My son has got his private assessment on Friday and I’m so nervous about it all- trying to be calm and not project anything on him. I’m torn between not wanting him to be anxious and then worrying they won’t see what we see at home. I am so unsure as to how he will react. I’ve started to drip feed in that we are going on Friday and he seems as cool as a cucumber and almost excited! I was just wondering how some of your kids acted before or at the assessment, did some mask and were the professionals able to see through it?

    H xx
  • RhanHRhanH
    Posts: 1,107
    I’m sorry I haven’t been on the forum for a few days. How did the assessment go?
    Although I haven’t attended a private assessment the professionals I met were skilled enough to see through my daughter’s masking! I hope you’ve had a positive experience today.
  • HannahH29
    Posts: 48
    Hi RhanH I really appreciate you replying thank you. I’m in a bit of a daze from today it was full on- can’t imagine how my poor little one felt. He was diagnosed with ASD with a demand avoidant profile. Now I’m wondering where the hell to go next... we are waiting to see NHS paediatrician in next couple of months and not sure whether to continue with this... my head’s spinning with talk of future schooling and EHCPs and to be honest I haven’t thought any further than this!
  • June67
    Posts: 779
    Hi Hannah, I really understand what you mean it's such a battle to get them assessed that we don't think about what comes after. Even if you strongly suspected ASD with PDA it can still be an emotional rollercoaster once things are confirmed, this is completely normal and takes some time and adjustment. Hold onto the reassurance that you were right and know your child well and can now start to work with others to support him so he gets the best outcome possible. You will need to talk together as parents to work out what you think he needs with the advice of the 'professionals'. My advice is take up any offers of help/appointments and find what works for you and him. School may take the lead on applying for an EHCP but they may not if he is good at masking there so you might need to push for statutory assessment yourself, this process can take a while but you already have quite a lot of evidence for his needs from the assessment. He might be offered speech therapy, or appointment with CAMHS etc. If your assessment was a private one you may need a GP referral for these services based on what the assessors saw. There is lots of information about the things that may be offered on this site and you can also consult your council's local offer to see what is available near you. Joining a support group locally could help you find out what is worthwhile and gives you help too. Remember you don't have to do it all at once. Sharing his diagnosis with school and helping them try to put suitable strategies in place might be somewhere to start while you wait for the EHCP process to get going. Just my ramblings but hope it helps, good luck June.
  • HannahH29
    Posts: 48
    Thank you so much June that has been a great help- you are right in not needing to do everything straight away, the battle begins from here I think! At least we have an idea now of what is going on and what is the correct road to take. Did you feel your child needed a school change, I was told at the assessment that children with PDA manage ok for the first few years and then fall apart when the demands get too much. I can so see that this will be my son, he likes the freedom of the child initiated learning but I just can’t see him managing being taught in a traditional way and the school he attends is typically high attaining and a large primary. Whilst he isn’t outwardly struggling ( or so it seems to those looking from the outside) at school at the moment I can see it will get worse. Do I try to make a proactive move or see how he goes, but am I setting him up to fail? These are just some of the questions bouncing around my head at the moment...
  • HannahH29
    Posts: 48
    Also, I’ve been told to also try and see the paediatrician and get on the NHS ASD pathway as some settings/ professionals won’t always accept a private diagnosis. Would it ever be that they would dispute the private assessment?
  • Rubytuesday
    Posts: 266
    Hi Hannah, my daughter was diagnosed with ASD privately using the NICE guidelines (diagnosis by at least 2 professionals). It has been totally accepted by our local NHS and age has been under CAMHS ever since. So hopefully your area will be the same. Although PDA isn’t recognised in this county the psychiatrist who my daughter sees has changed her diagnosis to ‘Autism with anxious avoidance’. I think after working with her some of the CAMHS professionals actually now accept the idea of PDA more than before! On the subject of school my daughter coped until secondary school then it all fell apart. Not sure how old your son is, but if he’s primary school age I’d think very carefully about secondary school choices... Our daughter’s secondary was very academics focussed and although she’s bright it definitely wasn’t the right place for her.
  • HannahH29
    Posts: 48
    Sorry for late reply, thank you so much to everyone who commented, it’s been so informative and reassuring to hear those that are more experienced dealing with this. Having a really bad time at the moment and I’m struggling big time, I just need to get some support around us and try to help my son regulate his emotions in a productive way in stead of being physically aggressive all the time.

    Xxx
  • RhanHRhanH
    Posts: 1,107
    If it would help to chat to someone you’d be very welcome to contact our Enquiry Line: https://www.pdasociety.org.uk/contact

    I’ve also included a link to our pages about managing meltdowns which you may also find helpful: https://www.pdasociety.org.uk/families/managing-meltdowns

    Try to keep strong and please do keep posting and asking questions, we’ll all try to support you.
  • HannahH29
    Posts: 48
    Thanks so much RhanH that is so kind and supportive, I appreciate it so much xxx

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