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Impact of the PDA label
  • My Masters dissertation has the title - 'what impact does the label of PDA have on the understanding and practice of staff and parents?

    I would really appreciate any comments to this including specific anecdotes which i could then use during my write up. As you are all aware the available research is fairly minimal so anything anyone could give me would be a real help. Thanks very much.
  • angel child
    Posts: 215
    Hi, I think having the labelof PDA does help alot of families when there children have been dx with other conditions and still nowt is working for the child, it suddenly becomes alot clearer. It did for me anyway.

    As for other people well I think many just dont understand it and many professionals don't want to use it. :lol:
  • Garden
    Posts: 329
    Hi

    Most people think that the name of the condition is a joke - it's really frustrating because people inevitably say sth to me like "oh, I thought all children suffered from that" and it really doesn't help one little bit.

    My daughter has an official diagnosis of PDA from a paediatrician at the local hospital, but the ed psych and CAMHS tell me that it's a 'contentious' diagnosis and they don't recognise it. We are currently seeing an ASD specialist at CAMHS, which is the nearest thing they have to someone would would understand PDA. She has heard of it, apparently, but has no experience of PDA. She feels that our daughter does have autistic traits, which is useful to me, in that she behaves well around adults and at school etc (if a little bizarrely) and so many people in the past have refused to aoccept that she does have a problem. Her behaviours are extremely socially manipulative - she chats away to adults very confidently (but totally inappropriately), but people like that. The CAMHS therapist picked up that this is an issue, but like I said, she just sees it as ASD, not specifically PDA.

    On the other hand, I am getting DLA for our daughter, and I am sure that the PDA diagnosis did help. And it was useful to be able to take information on PDA into our daughter's school, because up til that point I was really struggling to get them to take our daughter seriously in terms of having a problem.

    Our daughter is adopted and up til the PDA diagnosis everyone had been looking to diagnose her with RAD (reactive attachment disorder) so I am VERY happy to have a different label to use with her, as I never felt that RAD fitted. But it just goes to show how easy it is to interpret these kids' behaviours in different ways.

    hope this helps, Garden
  • mango69
    Posts: 967
    Hi het,

    'what impact does the label of PDA have on the understanding and practice of staff and parents?



    Good question to answer - full of lots of stuff - For parents it can be a blessing - relief, something solid to go on, support from other parents, confirmation that you are not going mad, but at the same time, because it is not yet recognised more widely, disbelief by people you tell, more explaining to do, staff at schools not always taking you seriously, paediatricians and psychologists dismissing the diagnosis. However, if the staff and professionals are open minded enough or they have heard of PDA before then it is again a relief and confirmation for the parents why certain things do not seem to work.
    For the open minded school, it can open a lot of doors to realise why someone is behaving the way they are behaving, however the strategies are not easy to implement for teachers in a mainstream setting with little support and often I think teachers feel they cannot be seen to be 'backing down' in front of other children. The latter, coupled with the doubt about its acceptance as a syndrome in its own right, I believe, leads many mainstream teachers and supports to stick to usual methods of behavioural control which usually fail miserably on these children and lead to exclusions.
    Good luck with your dissertation.
    Margo
  • bronwyn
    Posts: 5
    Knowing that my child had PDA was a bitter-sweet relief. It is great to finally know what drives my child to the extremes he goes to, but it's also heartbreaking when you read about the symptoms that lead to the dianosis.
    What is frustrating is as Garden said, so many people have said "all children are like that" without really knowing the real facts. Nobody, except my sister whose daughter is looked at for PDA but was diagnosed with PDD, has heard of this and tend to dismiss the behavioural problems. Everyone has heard of autism so these other problems should be brought into public domain and not just those who have had children diagnosed with them.
  • dirtmother
    Posts: 897
    Positive impact - definitely a help in shaking off inappropriate ways to deal with him and stupid things to say about him - not 100% success but people do usually stop half way through a sentence which is about to say he can't deal with change and say "Actually that's rubbish isn't it?" It also makes it easier to find other people with similar challenges

    Negative impact - too many people see the PDA as the only obstacle to his learning, or don't think it is worth attempting to tackle the other challenges he faces because of the PDA eg the dyspraxic and dyslexic elements. You can take the excellent phrase "Won't not can't but can't help won't" too far.

    Awful name - it sounds like a political correctness joke and if you mention the terms ASD or autism at all people are off and running with those rather than learning anything about him or PDA. Even 'developmental disorder' is fraught with misunderstanding.

    For us, I think most people actually working with him ie in school or in the family recognised that there was something wrong rather than a plain naughty child, and we never really felt it was anything we were doing wrong ourselves (we get it wrong sometimes of course!). It wasn't so much for us that we needed a label (except for recognising how 'the system' works), we needed not to have an inappropriate label which he might otherwise have got and an inappropriate way of working with him. I did wonder if having a label might make it easier to talk to him about his difficulties but not so far, although I think it does help his brother.
  • webbwebb
    Posts: 2,569
    Hi

    At 4 yrs my son was diagnosed Autistic. By the time he was 9 both his special school and I were at our wits end!
    Both of us agreed that using stratagies for Autistic children with my son did not work at all.

    Then the school found some info. on PDA and we both agreed this diagnosis "fit" my son.

    His new special school and myself started using the new stratagies for PDA children and things began to get a little better.

    He is now 14 and I am so relieved to have found out about PDA, it was like the light came on in side of me when I read the diagnostic criteria. I finally understood my son and began to work with him not against him.

    His new special school already knew about PDA, that's why I chose it. Within 2 weeks they confirmed he had PDA and they were using all stratagies.

    hope this helps.
    paula
  • Thanks very much to all who responded - it is all useful for my dissertation - any further comments also welcome.

    Heather
  • Lixina
    Posts: 289
    In my case as a homeschooled student my parents had intuitively figured out everything I needed regarding PDA - they were also helped by the book Strong-Willed Child or Dreamer which describes a similar personality type. So the only real benefit is finding out I'm not the only one. Had I been diagnosed back when I attended school, it might have helped, but only if my teachers had been willing to listen to the advice for it.
    I hate the name too. Maybe we could call it Newson Syndrome because Elizabeth Newson first described it?
    Ettina
  • webbwebb
    Posts: 2,569
    Hi

    Ettina, I really like the idea of calling PDA "Newson Syndrome" - could you e-mail E Newson and ask her what she thinks???

    Paula
  • mango69
    Posts: 967
    Yes I also hate the name, people look at you in disbelief when you say it!!! I like Newson Syndrome too. On the other hand - the people at the ENC believe it describes the condition very well. Perhaps it could be called either or!
    Margo
  • dirtmother
    Posts: 897
    On the other hand the people at the ENC do seem admirably pragmatic and focused on what achieves the greatest benefit for people with PDA and their families more than being strictly accurate. Pathological Demand Avoidance is very descriptive of the key feature of this disorder - and if Syndrome is kept on the end then that's a reminder that there is more to it besides.

    I've been disappointed that it does not appear that any of the secondary school staff we've been talking to has googled PDA before meeting us - a friend of mine said that was her instant response to being told the diagnosis. But then she encountered all the technical devices, the Blackberries and wotnot! (She got there in the end)

    When I was doing my first degree I did my dissertation on nursing homes and what most people now think of (inaccurately) as Alzheimer's. At the time the prevalent term was Elderly Severely Mentally Infirm but some people were trying to use Chronic Brain Failure - and I thought it was a great, descriptive term, particularly as dementia as a term didn't seem to be doing anyone any good. However, I have seen in the ensuing years how using Alzheimer's across the board, which at the time was solely applied to a particular form of relatively early onset dementia, has raised the profile of people and their carers who really need support.

    I feel the same thing has happened with Asperger's.

    Whatever works though. I have been more resistant than most to the idea of PDA being seen as an ASD because our personal experience has been that it is actively unhelpful for our own child, but I felt Phil Christie's point about battles worth fighting was well made. At some level I don't much care as long as no-one ever, ever desribes my child as "PDA" or "Newson" rather than 'having PDA/Newson', if that makes sense.
  • Lixina
    Posts: 289

    Whatever works though. I have been more resistant than most to the idea of PDA being seen as an ASD because our personal experience has been that it is actively unhelpful for our own child, but I felt Phil Christie's point about battles worth fighting was well made. At some level I don't much care as long as no-one ever, ever desribes my child as "PDA" or "Newson" rather than 'having PDA/Newson', if that makes sense.



    I really don't like person-first language. It's not that I have PDA, as if it's some kind of appendage - instead, my entire way of thinking and feeling differs from other people in a pattern that Elizabeth Newson decided to call PDA.
    As for it being seen as an autism spectrum condition, it's clear to me that I really do have a lot in common with non-PDA autistics. And if you treat any autistic child as if they're an embodiment of autism, rather than a unique individual who has a number of traits described by the label of autism, you'll have trouble. In addition, in my experience a lot of treatments for autistic kids that are spectacularly bad for PDA kids are also bad for non-PDA autistics, but not as obviously. A lot of autistic rights activists are strongly opposed to ABA because of the focus on changing behavior without recognizing the underlying cause, and analogize it to 'curing' gays by training them out of acting gay. I think if more autistic kids were treated the way PDA kids are supposed to be treated, that would be a good thing. The problems resulting from behavioral treatments for most autistics are less obvious but still very real.
  • Amanda
    Posts: 281
    I completely agree with you Lixina.
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