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  • Zippy
    Posts: 8
    My 9 year old daughter had a diagnosis of PDA but our local authority won't recognise it. They have now sent her to see a psychiatrist who has said there is nothing wrong with her. She does at the moment cope well in mainstream school but at home she is a totally different child. Apart from seeing the psychiatrist once every 6 weeks she gets no other support. What do I do??
  • webbwebb
    Posts: 2,566
    Hi Zippy

    Welcome to the PDA forum, I hope you will find some support and understanding here.
    Many of us have this exact same problem! Most local authorities do not recognise PDA as a seperate condition/disorder.
    Some children are diagnosed as having Asperger's when infact they have PDA. Even if you manage to get a diagnosis of PDA for a child (from a professional who knows and understands) you are then told by your local authority that they in fact don't recognise it.
    PDA is on the Autistic Spectrum of Disorders so many of us are using the term ASD for our children but this has many draw backs! The stratagies for dealing with a PDA child are not the same as for a child with Autism or Asperger's.
    So although using the ASD label might get you some services which are for Autism etc ie NAS services or local Autism services in Development Centres, GREAT care must be taken with schools/teachers because what works for Autistic children in the classroom will not work for PDA children.

    I'm sorry if I have confused you at all , this situation is tricky and there will be no easy way round it until PDA is recognised by all professionals and authorities start taking some responsibility for these disabled children.

    Many PDA children remain passive at school and yet volatile at home. Unfortunately my son was volatile in both so he is in a brilliant special school.

    As for the psychiatrist your daughter is seeing???? He/She knows very little about ASD children or PDA.

    It is very hard to find professionals would do understand but I now refuse to see any prof. who isn't an expert on Autism/PDA, it would be a waste of our time and theirs.

    Eventhough I live in Notts I know very little about services in Lincs. Who gave you your daughters diagnosis of PDA?

    Please keep posting as we may be able to put you in touch with another parent or some thing out of your county that you may be able to get too.

    Hope to hear from you again soon
  • Zippy
    Posts: 8
    Hi Webb,
    Thanks for replying to my query, it feels better just to know that there are other people out there that are going through the same difficulties as me. My daughter was diagnosed 2 years ago at the Elizabeth Newson Centre. At the time it was thought she just had Asperger syndrome but that didn't quite fit. When we went to the Elizabeth Newson centre the staff there were brilliant, it felt like they were on my side and not trying to blame me for my daughters behaviour. The only trouble with being from a different area is that there is no follow up. I am at the moment at a total loss as how to cope with my daughters behaviour, she is very intelligent and is an expert at manipulation. But if she doesn't get her own way then all hell breaks loose and she can become extremely violent. We saw the psychiatrist yesterday and I didn't like him and my daughter said she didn't like him either. He had no interest in what I had to say, and just said that for the next 6 weeks I have to be more strict with her and set more boundaries. I know this will only make her behaviour worse.
  • webbwebb
    Posts: 2,566
    Hi Zippy

    I thought you were going to say you got the diagnosis from The Eizabeth Newson Centre.
    They are very, very good at diagnosing all Autistic Spectrum Disorders and probably one of the best at diagnosing PDA!
    At present they can do the diagnosis and report but can do very little follow up. As I live in Nottingham I have been to 2 PDA conferences run by the Centre, they were both basically the same as there is no new literature and no new services.
    The Nottinghamshire Authority still do not recognise PDA. I do not have an official diagnosis for my son because my authority would not refer me to the Centre. However my son has been in 2 special schools and both schools told me "he is different to the other Autistic children" "everything we try with him doesn't work" "He definately has PDA". I read the criteria, knew this fit my son, so accepted that he had it. All my attempts through my GP or 3 different Peadiatricians met with but he's Autistic, there's no such thing as PDA or why do you need an official diagnosis on paper of PDA, don't you know it costs £3000 at the Centre!

    Amanda and I both live in Notts and we have just set up a parents support group for parents of PDA children, it will happen once a month.
    Also Amanda did say on this forum that she has secured some funding to begin putting a training package together that she could possibly deliver to small groups around the country. These 2 things have only just come about and only because Amanda and other parents want to try to fill the huge void in services for parents of children with PDA.

    Another parent on this forum from Hampshire has also recently made contact with other parents in Hamshire about trying to put a support group together.
    I suppose you could say that parents have realised that even though we feel half dead most of the time, we are going to have to help each other if no one else will help us.
    (Amanda's son is 17, mine is 13)

    Of course your daughters behaviour will escalate, she will know you are trying to take away the control she wants to keep! Have you given the psychiatrist the diagnostic criteria for PDA? I wouldn't say stop going but you need to keep strong when he challenges your parenting!!!

  • Zippy
    Posts: 8
    Hi Paula, I know just how much the Elizabeth Newson centre charge as I had to get my daughter diagnosed privately. As soon as I read about PDA I knew that was what she had. She does have a-typical Asperger's as well but the PDA is the most dominant condition. I do also love her to bits but she can drive me mad. There does need to be more awareness of PDA and how to best handle it for both parents and professionals, once you have a child with PDA your life is never going to be the same again! I did attend the last conference organised in Nottingham on PDA where Phil Christie and Margo Duncan spoke, I thought it was quite helpful but the best thing was meeting other parents who were in exactly the same situation as me and knew just what I was talking about when I mentioned my daughters behaviours.
  • Amanda
    Posts: 281
    I wish you had introduced youeself, there were lots of us there hun
  • Zippy
    Posts: 8
    Hi, as my life seems to revolve around PDA 24 hours a day I'm always glad to talk to anyone who is in the same situation. It is nice not to be judged and told that my parenting skills have made my daughter have PDA. It is also good to be able to contact people who believe what you are saying about your childs outrageous behaviours and demands. Are there other parents on here who's lives are run by their child?
  • I second what you have said there Zippy, since joining this site at last I feel that there are people out there who actually understand what is going on with my son, rather than him just being branded a spoilt child that's used to getting his own way, that a slap wouldn't sort him out!!!

    Throughout the day we can have as many as 20 battles+, which can really almost push me over the edge, which can to other people seem like it's over nothing. Now i'm begining to understand my son a bit better, I feel it has got easier, I just need to snap myself out of feeling down and like I can't cope.

    I think the best thing is when you're out and you can see a meltdown is about to occour and then being able to stop it using diversion, calming techniques etc it makes you feel that you are doing something right.

    Good luck with getting some support :lol:
  • webbwebb
    Posts: 2,566
    Hi Zippy

    Yes I was at the last PDA conference where Margo spoke, unfortunately I left early due to children!
    I wish more of us could have had a chance to meet and talk about our lives, children and endless problems!
    I only said to someone this week that the only new thing I get out of the PDA conference is meeting parents and listening to parent talks, like Margo's.
    Is there anyone else on the forum who lives in Lincs who you could meet up with?
    How close are you to Nottingham? Could you come over one day and meet with a few other mums of PDA children?
    I wish we had met at the conference!!!

    Take Care
  • mango69
    Posts: 967
    Hello Zippy,
    I have sent you a PM - you are certainly amongst listening ears here and I hope you can feel supported at least by us if not by anyone else. I think we are all ruled by our PDA children - to some extent, some more than others, such is the nature of this syndrome. We have to hang on to those moments like angel child said when we use the techniques and divert the meltdowns and can congratulate ourselves on them!
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