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Has my daughter got PDA
  • Gemma21
    Posts: 2
    Hi all, hope you are all well!
    I’m writing for views about my 12 year old daughter. She has Cerebral Palsy and has always been a bit ‘behaviour problematic’ if that makes sense! At age 10 she came on her first period and things started to get worse from there I think. This last couple of months have been really bad, I went into hospital for three weeks where my parents and brother had her, and since then I haven’t been able to drive so her routines have gone out of the window (my dad has had to pick us up every morning to take us to her school etc).
    I am a primary school teacher and have also worked in the Autistic ‘field’ for the last 8 years, which is where I saw things that I thought ‘well she does that!!’
    We have just returned from a short break to Peppa Pig world which she loves and have dealt with huge problems getting her out of bed and ready, even though she really wants to go, she has been refusing to get ready!
    Also a major issue at the moment is getting her in and out of the car. She will sit there for an hour with no reinforcement and still choose to sit there rather than get out!
    As well as this I will write some things she has displayed:
    Extreme need for routines and schedules
    Hates being wrong and will hit out/ throw things if she is
    The need to play the same thing on YouTube 100’s of times a day, over and over and restarting it,
    Pausing a clip at a certain point and having to have that with her to eat, go to the toilet, basically anything (at the moment it is a happy birthday clip of a boys birthday, she has to pause it just as he blows his candles out)
    Has to be last eating
    If a. Certain food is nearly all gone she won’t eat it as it will be gone
    Repeats questions over and over (what time is it/where are we)
    Have to take labels off drinks such as fruit shoots
    Masks this most of the time at school!!!!!
    If she has done something ‘wrong’ it won’t do something she will say things like ‘tell Grampy what I’m doing’ etc (so looking for some sort of reaction)
    Can go from happy to angry and vice versus in an instant
    Has to have a certain character on a certain colour when playing the wii else she won’t play
    Has to have a certain colour for a ride (yellow car/yellow cart etc)

    And there are many more!!

    CAMHS have suggested an Autism Assessment so I am going private as things are getting so bad I can’t wait for NHS :-(

    Haven’t had chance to spell check this as it’s so small I’m doing it on my phone whilst daughter sleeps next to me!!!

    Has anyone got any views!!!

    Thanks
    Gemma


  • webbwebb
    Posts: 2,569
    Hi Gemma21

    Hello and welcome to the Forum.

    I have a friend whos teenage daughter has CP and Asperger's Syndrome. I have one son with Asperger's Syndrome and one with PDA.


    I am sorry this is short but it's half term and my time is spent keeping my son's apart :)


    From what you have said it may be that your daughter is on the Autism Spectrum. She is doing many behavioural things that both my son's have done.

    I think to know whether it is As or PDA it is going to take a very specialist Psychologist and I totally agree that it may take a Private expert to know if your daughter has ASD or PDA.
    There are very few NHS professionals that will have knowledge, understanding and be able to assess for PDA and with the added CP, I think an expert in all ASD's incl PDA may be needed.

    Check out the 'Families Section' on the website - look at the 'Diagnostic Pathway for Children' and about half way down you will find 4 or 5 Private Diagnostic Centres that we are aware can assess for PDA.

    Keep Searching x


  • Gemma21
    Posts: 2
    Thanks, I have actually booked one already and glad to see it on the list in the families section!! :-)

    Thank you for the reply. :-)
  • webbwebb
    Posts: 2,569
    Fantastic - Keep us updated x
  • Holly59
    Posts: 2,586

    Gemma21 said:

    Thanks, I have actually booked one already and glad to see it on the list in the families section!! :-)

    Thank you for the reply. :-)



    Hi,
    https://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/autism/

    I was reading an article the other day and there is some evidence the statistics could be as high as 30% .
    From what you have said I think you are making totally the right decision getting an accurate diagnosis at this stage so the right Stratagies can be used . The level of controlling is excessive . It’s a very tricky age to deal with and expert advice must be sought . SPD goes off the scale for all sorts of reasons .

    Good Luck I hope you get your answers soon . If it is PDA there are lots of support groups and training days .

    Pat xx

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