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Primary Behaviour Service
  • Kissy
    Posts: 7
    Hi, I have a daughter who I suspect has PDA. She was assessed age 5 as high risk but did not have passive early history and clinical psych did not want to diagnose at that time as felt her emotional development was delayed versus her cognitive ability. She is now 8 and difficulties have got worse. Anxiety/anger/violence at home/demand avoidance/ meltdowns/ hairloss/tummy and headaches. We need help! Her school are great and have created a circle of friends, she has Elsa sessions, strategies to help her leave class and use a calming box of games/ mindfulness books etc. They are applying for funding to get her some extra hours of support.

    My big question is, they have offered to refer her to Primary Behaviour Services. I am very concerned that this will be a repeat of when we were sent for Tripple P by her last school. All about positive reinforcement versus sanctions that will not work and open us up to more judgement and criticism that won't help.

    Has anyone any experience of wether their support helps? Or is it time I got a formal diagnosis so my daughter gets the right and appropriate support?
  • Holly59
    Posts: 2,586

    Kissy said:

    Hi, I have a daughter who I suspect has PDA. She was assessed age 5 as high risk but did not have passive early history and clinical psych did not want to diagnose at that time as felt her emotional development was delayed versus her cognitive ability. She is now 8 and difficulties have got worse. Anxiety/anger/violence at home/demand avoidance/ meltdowns/ hairloss/tummy and headaches. We need help! Her school are great and have created a circle of friends, she has Elsa sessions, strategies to help her leave class and use a calming box of games/ mindfulness books etc. They are applying for funding to get her some extra hours of support.

    My big question is, they have offered to refer her to Primary Behaviour Services. I am very concerned that this will be a repeat of when we were sent for Tripple P by her last school. All about positive reinforcement versus sanctions that will not work and open us up to more judgement and criticism that won't help.

    Has anyone any experience of wether their support helps? Or is it time I got a formal diagnosis so my daughter gets the right and appropriate support?



    Hi
    Welcome to the Forum,

    It’s really good to hear that your school has been very proactive . It’s not often we hear that . I would definatly suggest it’s time to move forward towards an accurate diagnosis . The longer you leave her with the wrong Stratagies the worse the situation will become .

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

    There is a wealth of information on this link . Everything you need to know . Have you watched the Webinars ?

    There is a specific link for teachers too . Have you suggested PDA to the staff ?

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

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

    One for professionals too .

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,188
    Lack of passive early history is not a diagnostic barrier, PDA is a spectrum, an individual can have two ASD subtypes one of which can be PDA and all PDAers are individual. From what you say about the primary support services I agree it's a totally wrong move. Autistic children are not typical children and they behave certain ways for different reasons than other children, it's entirely to do with their cognitive processing, sensory, anxiety (which usually differs in cause to typical children's anxiety), auditory processing and other neurodiverse issues. I would ask for ASD specific support and send them information on PDA strategies and point out to them that all the indicators are that she has ASD-PDA and the wrong behavioural support could be harmful to her and cause more difficulties.
  • PDA_ASD_Parent
    Posts: 4,188
    "Parental Recognition of Autism - Professionals Must Listen!"
    http://docs.wixstatic.com/ugd/58c8f1_86f4d0a01e5e4c1485ebfb47dd69dbb3.pdf?index=true

    You have already been grossly failed by an inexpert clinician, resulting in total lack of early intervention for ASD with your daughter. Tell them your daughter has already been failed and to send her for the wrong type of support and behavioural management would be yet another failing. Her neurology must be recognised.
  • Kissy
    Posts: 7
    Hello, thank you everyone. Yes I have suggested PDA to her teacher and SENCO. They are unfamiliar but then, they have also never experienced a child that behaves like mine! I have supplied the resources from here to them and the Phil Christie book as well as "can I tell you about PDA"

    I think my instincts are correct that the referral could be completely wrong and we need a diagnoses. She had a huge meltdown today because the dog took the carrot from her snowman. I said she would not be allowed TV because she was really aggressive and violent to me. It of course escalated and she was shoving me really hard into things and smashing things. I need to know wether I should be disciplining bad behaviour or comforting a child having panic attacks. She us such an anomaly, we know she is very different but can present as so normal with excellent, engaging communication skills so it is hard to get people to understand x
  • PDA_ASD_Parent
    Posts: 4,188
    I always say that they still need boundaries and consequences, even if it's anxiety driven they need to learn that certain behaviour is unacceptable.
  • RhanHRhanH
    Posts: 1,107
    Hi and welcome to the forum. Personally I think it depends what the Primary Behaviour Services Offer, is this a service that comes into school or a school they attend? It would be good to find out more about what they could do. Our daughter was asked to attend our local pupil referral unit and although initially we felt concerned on talking to the Headteacher and her staff we realised that they could help us, but obviously much of this is dependent on who you have to work with.

    I would definitely ask to have your daughters case reviewed again and seek further advice particularly as you suspect PDA as the strategies are significantly different.

    With regards to disciplining behaviour it’s taken a while but we can usually tell now when our daughter’s behaviour is being ‘naughty/pushing boundaries’ and we use consequences, rather than when she’s in panic due to anxiety. Then we’d offer reassurance, diversion or wait it out and then when calm talk about how we could try to do things differently next time.

    Do have a look at the webinars and resources section but I would be very happy to chat to you further if you wanted to PM me, via the messages tab at the of the page.
  • Kissy
    Posts: 7
    Hi again. I spoke to PBS and they have confirmed they will visit the school initially and then maybe us at home. They also confirmed they have worked with children with PDA so I have agreed to the referral but will monitor the response. Thank you all again for your input. The school SENCO is now going to do a referral to CAMHS as well. I will read up on the guidelines here.

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