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Advice on getting a diagnosis
  • I really want to get my 9 yr old son assessed for PDA but can't decide how to go about it, or where to go. We are with CAMHS and I am slowly working on them to pursue an assessment but 1) it will take at least 18 months and 2) I don't think PDA is actually recognised in our area. SO I'm thinking of pursuing the private route. Places I'm considering - Elizabeth Newson Centre, Laura Wing Centre or Dr Jo Jones at healthcare4kids. I would be extremely grateful for any advice! (My son masks at school and therefore most of the evidence for a diagnosis is coming from me, or friends and neighbours.) Thanks in advance!
  • KobiKobi
    Posts: 52
    Hi Hedgehog71
    I'm afraid I don't have any experience of private assessments but you may find more info here:
    I was told you can struggle to get treatment on the NHS if diagnosed privately, but that may not always be the case. I noticed the private referrals also have waiting lists, so it may be worth contacting each place and checking on prices and times before you make any decisions. It took me 4 years of to-and-fro before we finally got my daughter diagnosed, and although her diagnosis doesn't mention PDA, I've found most organisations accept our opinion as they focus on the individuals needs and struggles regardless of what 'label' they have.
    Sorry couldn't be more helpful. Good luck!
  • webbwebb
    Posts: 2,593
    Hi Hedgehog71

    There are several Independent Diagnostic Centres on the link above that Kobi has given, as long as a Diagnosis is conducted in a Multi-Disciplinary way ie 2/3 professionals doing the diagnosis together (Psychologist & Speech and Language therapist OR Paediatrician and Psychologist etc etc) and your GP makes a referral (although not totally necessary) then you Local authority should accept the diagnosis.

    All 3 independent diagnostic Centres are good at diagnosing all ASD's incl the PDA Profile of ASD. You would need to telephone each one and ask what their waiting times are and their costs etc.
    (I doubt that any of them are more than 6-12 months and some could be less)

    If your child masks at school it can be great to have other evidence/reports from family, friends or activity club leaders etc.

    Give several a phone call on Monday :)

  • Hi,
    I have heard really good things about Dr Jo Jones from several parents in my area. I've also heard lots of positive things about Help4Psychology, but I guess it depends where you are in the country and where is most accessible. We obtained a private ASD diagnosis for my daughter and as it was conducted by a multi-disciplinary team our LA have accepted it and included it within the EHCP we've just got.
  • Mickrick
    Posts: 20
    We are currently going through private assessment for our 5yr old at The Retreat - York - maybe worth contacting - they work with NICE guidelines and have contracts with the NHS - they are flexible and open minded.
  • webbwebb
    Posts: 2,593
    Hi Mickrick

    I haven't heard of The Retreat in York, how did you find them?
    Are they doing a Multi-Disciplinary assessment ie 2/3 professionals from different professions?

    Do they know what to look for/how to diagnose the PDA Profile of ASD and if so where were they taught about diagnosing PDA?

    It may be another Diagnostic Centre the PDA Society could add to their list?

    Thank you

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