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Pros and cons of a diagnosis.
  • Rmum
    Posts: 5
    Hi, I'm new to the group and am hoping to find get some advice. I'm pretty sure my 10 year old daughter has PDA, she ticks all of the boxes apart from being passive as a baby, she's never been passive. I've thought she was on the spectrum since she was very young but have never felt the need to investigate fully but as nursery and school never questioned it I thought it must just be me reading into things too much. As she's got older things have become more and more difficult and I'm at my wits' end and absolutely exhausted.

    I'm wondering whether to start the ball rolling for a diagnosis, I'm aware that the NHS in some areas don't recognise PDA and that, even if they do, it can take months or years to get one. I'm considering going down the private assessment route but I'm not sure if a diagnosis by either means is necessary or not. I understand that from an educational point of view they can be helpful as it will help with SEN but my daughter is being home educated now, this was due to difficulties at school which included being emotionally bullied but will no doubt be in part due to her having a PDA type personality. From what I can work out so far, the only 'treatment' is adapting new strategies and coping mechanisms (I've a lot more reading to do) so I'm wondering, are there any other benefits to getting a diagnosis?

    I'm also worried about how a diagnosis will affect her future prospects as an adult when it comes to pursuing a career. Surely having a record of pathological demand avoidance would decrease your chances of getting a job or completely rule you out of certain sectors. Sorry if that sounds ignorant, I've been reading lots in the last 24 hours and one of the things said that it's not recognised as PDA in adults so is called a mental health issue. That article was written about 5 years ago so maybe things have changed since then but I don't want to put a label on my daughter that might hinder her prospects later in life, especially if she has the ability to learn to cope with it and learn to be more compliant.

    Also, last question (sorry), if I was to go for a private assessment, would this information be given to her Dr/NHS/local authority and other agencies or would it be ours only?

    Thanks in advance for any help.

  • I strongly believe in diagnostic rights and would always say it's worthwhile having a diagnosis. Our children are only 'lent' to us and it's not our place to deny them something we personally don't believe is necessary. PDA as an ASD is lifelong. She will need support, adjustments and understanding all her life. She will need to access legal rights regarding having an ASD as a disability, that she is very likely to be denied without the diagnosis.

    She doesn't have to disclose an ASD diagnosis on a job application. But if they don't know and she runs into difficulties without the right adjustments in the work place, they will have no duties to consider her disability in relation to e.g. negative staff appraisals until they know of it. She could suffer constructive or direct dismissal and be able to do much less about this because they couldn't be discriminating against her without knowing. She may not be able to work and may need to claim PIP and other benefits for which she will need proof of her disability.

    No, private clinicians do not notify anyone and would only notify your GP with your permission. If you are worried they might do so as default, you just need to notify them up front that you don't give permission for it.

    Bear in mind, that as you have discovered, her difficulties have become more apparent as she gets older. And actually she may be struggling precisely because she wasn't diagnosed at a younger age. Early intervention is vital. Once she hits adolescence she is at high risk of mental health problems without a diagnosis that leads to the right support and the right educational placement.
  • Rmum
    Posts: 5
    Thank you for your reply. You’ve said everything I needed to hear. You’re right, this is not mine to take ownership of and, if I’m being honest, it’s too big for me anyway. I need help, I’m struggling to cope and it’s not likely to get better without guidance and support. I just want what’s best for her and I worry about her future, the best thing I can do for her is get all the help she’s going to need, not hide it.

    I really appreciate what you’ve said, thank you. Time to get an assessment!
  • You're welcome, good luck!
  • RhanHRhanH
    Posts: 1,133
    Rmum, welcome to the Forum. Please do feel free to continue to ask any questions that you may have. Wishing you all the best as you seek assessment.
  • Rmum
    Posts: 5
    Thank you. I do have more questions and I’m sure there will be many more to come.

    Can anyone tell me the fastest route to a diagnosis please. I’m not rich, quite the opposite in fact as a single parent on low income with no support from her father which is our choice, actually I’m now thinking he has PDA as it explains a lot of his behaviours.

    Before joining this group I emailed ENC before I knew it costs thousands that I can’t afford. However, I’ve just had a reply saying that I would need an initial diagnosis of ASD to investigate further for PDA. I’ve read somewhere that there’s a Dr Daphne Keen in London and it’s around £800 for an assessment with her, which I could find, but I’m wondering if we are always going to need an ASD diagnosis first.

    I’m in lots of home education groups online and have always seen posts that say it took 18 months or more to get a diagnosis so was hoping to avoid this by going private.

    Also, how do I find out if PDA is recognised in my borough? I found a link in here but it took me to a page for cocaine addiction
  • Rmum
    Posts: 5
    Some of my post disappeared! It was just saying that I’m trying to find all this info on the internet but keep getting sidetracked by other info, feel I could be here weeks and not find the answers I’m looking for as there’s so much to learn.

    Thanks again
  • Holly59
    Posts: 2,586

    Rmum said:

    Some of my post disappeared! It was just saying that I’m trying to find all this info on the internet but keep getting sidetracked by other info, feel I could be here weeks and not find the answers I’m looking for as there’s so much to learn.

    Thanks again



    Hi
    Welcome to the Forum ,

    https://www.pdasociety.org.uk/families

    This link explains everything you need to know . You need to collect evidence , approach your GP for a referral .

    https://www.zeemaps.com/view?group=1665768&x=-1.363501&y=53.432604&z=13

    My geography is shocking . Look on here for your nearest support group, there are many others listed in the FB Groups .

    The original link explains things like out of area referrals .

    Pat xx
  • Rmum
    Posts: 5
    Thank you x
  • Holly59
    Posts: 2,586

    Rmum said:

    Thank you x



    No problem .

    The support groups are great . The parents will help you and give you local information . Most of us don’t have a diagnosis .

    Watch the Webinars listed . They are a great easy way to learn about PDA .

    Good Luck .

    Pat xx
  • Holly59
    Posts: 2,586
    https://www.facebook.com/help4psychology/

    Another suggestion to save you some money is to approach Help4Psychology in Norwich . They will work from Skype . You can ask for a pre assesment which costs £95 which will give you a good indication if they believe you should follow through for a full assesment .

    This will add to your evidence .

    It’s interesting that you think your child’s father might have ASD-PDA . There are more adults approaching the PDA Society than families as the awareness grows . You need to add this information to your evidence .

    I would strongly suggest he looks at the Support Groups for Adults . There is a specific helpline for adults too.

    https://www.pdasociety.org.uk/adult-life

    You can apply for DLA / PIP without a diagnosis but you would need support for Citizens Advise or a welfare benefits agency .Dont even think of doing this without support .

    You can also ask for a Carers Assesment , it’s Law , through Carers UK .

    You do not need a diagnosis for. an EHCP either , CSP in Scotland .

    Pat xx

  • I would need an initial diagnosis of ASD to investigate further for PDA.



    I am very surprised they have said that. Extremely so. PDA is an ASD and it's incorrect that they cannot assess for PDA without an ASD diagnosis first, so why they are now insisting on this I don't know. They didn't used to. It's like saying we can't assess you for insulin deficiencies if you don't have an existing diagnosis of diabetes. Ridiculous when you think about it. If a child is not autistic then it's not PDA, so they would in any case be doing a differential assessment and if it wasn't ASD-PDA it might instead be ODD, at least the parent has an answer to their child's difficulties. It's very sad if it's because they are buckling to pressure, from the NHS not accepting PDA as a distinct subtype implying it's just a profile of behaviours in an autistic child. Maybe because the NHS aren't accepting their diagnoses, but if so that's a cop-out for monetary reasons, as it would boil down to them thinking parents would stop going to them if the diagnoses weren't accepted, or maybe they would not get NHS referrals. Private diagnoses of conditions have to be accepted according to the NHS own rules and too many NHS clinicians are lying/misinformed and saying they don't recognise them.

    Agree with Pat about Help for Psychology (website here: https://help4psychology.co.uk/). You could look into charitable funding, on https://www.turn2us.org.uk/ you can do searches on charities that offer funding to suit your purpose.

    If you are in a position to take out a loan that's another option.

    At least even if you only get the initial Skype screening from Help for Psychology, they will do screening questionnaires (EDA-Q and their own questionnaire) as well as the 1 hour consultation, which they will give you written feedback on, indicating if it seems like ASD/PDA and this will count for something if you have to wait to afford an assessment.

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