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Is a PDA assessment the right one?
  • For years I have known that something hasn’t been quite right for my daughter. When I read about PDA, I had the lightbulb moment that everyone mentions.
    My daughter is 9 years old and we feel she fits the criteria for PDA. I have been sent the forms from help4psychology to fill in and send back to them, which I am in the process of doing.

    There are some things that make me doubt if it’s PDA, such as, there are sometimes days when she will comply and not really make much of a fuss, other days it’s meltdowns all day long. Some days she’ll be the first to get ready for school and other days she uses every delay/avoidance tactic going.

    She likes to be in charge of games and make up rules, but there are times where she can be flexible with things like this.

    She likes role play, she likes to dress up and she really loves to set up her own restaurant, (menus and all) and serve us up real food mostly at breakfast time. Or if we are going to watch a film, she likes to make a popcorn stand and sell us tickets and popcorn to watch the film with. However, she doesn’t appear to get ‘lost in character’ and believe that she really is that character as it is described for PDA. Not that I can tell anyway? All of her things that she plays with involve some kind of imagination, such as playing with dolls, Lego, art and craft or making potions in the garden!

    At the minute, she’s not falling asleep for hours. She’ll say she’s not tired, needs a wee, needs a drink, fake coughing, can’t fall asleep... can’t explain why... she says she just “can’t”. I just tell her to fall asleep when she’s ready, and she can read a book if she wants to and eventually she falls asleep. This is the only thing that is really consistent daily at present. However, there has definitely been a presence of all other things PDA since she was around 2 years old, we even thought Aspergers for a while.

    School is the main problem for her, she always comes home upset because someone has annoyed or upset her, this usually sets her off for demands to be avoided at home. She says her teachers are bossy, rude, unfair and doesn’t listen to her. She said yesterday that her teacher treats her like an ‘obedience dog’. But it’s just usual teacher things, like sit down, be quiet, etc... she clearly doesn’t like it. She always complies because she doesn’t want to get in trouble at school. She seems to generally know how you ‘should behave’ at school, then comes home and lets it all out.

    We have been using PDA techniques to help her and they do seem to help reduce a full meltdown which is amazing!

    Anyway... my main question... Do these kind of things vary between children with PDA? Or is it certain that they must be present all the time for a diagnoses?
    Can some children just have the traits of PDA or ASD but not a full diagnosis?

    Sorry for the long post, and thank you in advance for replies
  • Hello and welcome. Your daughter sounds really similar to mine (she is now 13) - when she was your daughter's age she always used to say that her teachers were too bossy! I've had periods of time with my daughter when things seemed calmer/easier, and also she can vary from day to day. I think it's down to many factors, but mostly due to anxiety. When her anxiety is lower she has far more tolerance to demands. Have you read any of the books on PDA? There's a few listed on here - the book 'Understanding PDA' is great and talks about people with PDA having 2 dials, one for demands and one for anxiety. When the anxiety dial is lower then you can turn up the demands, but when the anxiety is high then the demands need to be reduced. This really helped in understanding why some days my daughter can do something (like brush her hair) whereas other days it would lead to a huge meltdown. Hope this makes sense! Also, PDA is a spectrum as with any ASD, and children can be anywhere on that spectrum - so my daughter coped fairly well until she got to secondary school but since then her traits have been far more obvious. I really believe that if PDA strategies work there's a definite possibility of PDA... Good luck.
  • JAFFA
    Posts: 14
    Hi there,
    I just wanted to give you some reassurance. Fill out the forms and let help4psychology worry about the diagnosis. Dr Judy and her team are very thorough and can spot PDA while spinning upside down blind folded. If your daughter has PDA they will know and if she is not a PDAer, she won't get a diagnosis. Try not to worry. They know what they are doing up there!!!!!!!!
  • June67
    Posts: 805
    I agree, the main thing with PDA that people don't understand is that the avoidance varies depending on their ability to cope or fear and anxiety levels. We had lots of people say it can't be anything but poor parenting because it doesn't happen all the time...even our local CAMHS (or CHUMPS as we call them). The Help4 team are great, they are just as happy to say it's not PDA as it is (depending which your child is) and will offer some helpful advice either way. Knowing one way or the other is really helpful to guide you to using correct strategies that might improve things.
  • RhanHRhanH
    Posts: 1,133
    Welcome to the forum PinkClouds.

    It can be a confusing time when seeking a diagnosis but as JAFFA and June67 say Help for Psychology are very experienced and will look at all aspects before sharing their
    findings, so please try not to worry, although I appreciate this can be easier said than done. Our children are all unique, some will show more anxiety or outward coping strategies than others, some will manage a few demands seemingly without question but the right specialists will be able to identify if they believe PDA is the right diagnosis.

    Rubytuesday gave a great example of the anxiety and demand dials which I’ve also found helpful. Do check out our resources section for more info on PDA, the Webinars we have also offer a good foundation. https://www.pdasociety.org.uk/resources

    My daughter, 10, doesn’t always immerse herself in role play either. Although she can sometimes be a specific character, often dog related to avoid tasks that require hands! I would say that although she is creative in her play it is a variation of the same game with little depth. It makes her feel safe and in control.

    Please do keep posting and asking questions.
  • Thank you so much for your replies and the reassurance! :) I really appreciate it!
    I haven’t read any books yet, but the understanding PDA one sounds like it will be useful! Thank you! Thank you also for the info on the webinars, I will listen to those! :)

    It is great to hear that Help4Psychology are highly thought of, I am glad that I have got in contact with them now :)

    I have sent the questionnaires back, so now just have to see what Help4psychology say and go from there. In the mean time, I’ll carry on with the PDA strategies that I have read about and also keeping the dials in mind (thank you).... because they all really seem to have helped! That and the combination of it being half term and my daughter loving that she doesn’t have to go to school!

    Does anyone know how long it takes to hear back from Help4psychology once sending off the questionnaires? Also, does anyone know how long their waiting list is if a full assessment is advised?

    Thank you again!
  • So glad the strategies are helping. Just checked my emails and it took about a week for us to hear back from Help4psychology.
  • I got a reply from them this morning. They said there is enough evidence from the screening questions to warrant going straight to a formal assessment, just need to arrange an appointment. Did anyone else get this feedback or did you get a telephone assessment first?
  • June67
    Posts: 805
    Yes, I got the same reply and went straight to the assessment; it speeds things up which can be useful if you are trying to get school or other professionals to see sense. All their answer means is that you are good at observing and communicating what your child's issues seem to be. We went for our assessment in August, as we had quite a way to travel we stayed in a local city centre budget hotel and made a minibreak of it with a trip to the cinema and meal out as a reward after as that is what helped him get there. He managed to complete most tasks because he was relaxed.
  • Okay, that is good to hear :)
    My daughter hates long car journeys, she gets quite anxious about travelling if it’s any more than 20 mins because she gets travel sick. It’s around a 3.5 hour journey for us, so we will also have to make it an over night stay with plenty of stops on the way! Cinema and meal out sounds good, I’ll have to add that in too! :)
    I haven’t considered anywhere closer yet, so may look into that first. Although, Help4psychology seem to be so highly recommended, I think I’d rather go to them.

    Thank you :)
  • We were offered a Skype call as they felt there wasn’t enough detail... so they definitely don’t give the same answer to everyone! We ended up doing the Skype call after we’d had an ASD diagnosis. It was so helpful that I cried afterwards, I think it was the first time a professional had really understood my daughter’s issues. Nearly a year later and local CAMHS team finally talking about her ‘demand avoidance’...

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