Pathological Demand Avoidance – why learning about PDA has helped me to help my son

As it is PDA Awareness Day I thought I’d write a bit about Pathological Demand Avoidance and why reading up about it has helped me to help my son.

Pathological Demand Avoidance or PDA for short is a lifelong disability that is increasingly seen as part of the autism spectrum.  The main characteristic of PDA is an obsessive avoidance of everyday demands due to high anxiety levels and the need to be in control but there are other symptoms.  These are summarised by The National Autistic Society as follows:-

  • obsessively resisting ordinary demands
  • appearing sociable on the surface but lacking depth in their understanding
  • excessive mood swings, often switching suddenly
  • comfortable (sometimes to an extreme extent) in role play and pretending
  • language delay, seemingly as a result of passivity, but often with a good degree of ‘catch-up’
  • obsessive behaviour, often focused on people rather than things.
  •  

    It was the issue of  control and fantasising that drew me to learning more about PDA as my son has particular difficulties with these things.  My son can become so anxious that he is unable to cope with demands from other people, notably us.  If told to do something he can become aggressive to the point that he is close to meltdown.  He also regularly escapes into a fantasy world where he takes on a particular cartoon character and where conversation is dominated by the world this character lives in.   Whilst I sometimes worry that he loses touch with the world around him, it is less of a problem compared to the behaviour brought on by his need to control.

    However, we have found that he rarely behaves like this at school (he has learnt to mask his difficulties whilst there) and so it’s hard getting people to recognise these aspects of his behaviour.  Whilst school recognise his autism and anxiety, they don’t have much of an idea of how controlling he can be at home.  This was particularly a problem when he was school refusing because many people thought it was simply a case of telling him to go to school.  The situation was much more complex than this of course and as I have written on here many a time it was a case of gradually exposing my son to his anxiety and empowering him  to make the decision to go back to school.

    Whilst there is no question that my son has an autism spectrum disorder I have often felt that I haven’t received an adequate explanation for his controlling behaviour.  Whilst the diagnosis of an anxiety disorder may explain his anxiety issues, I never felt it explained his demand avoidance which got so bad at one point that we became wary of asking him to do anything!  Instead I was often made to feel by professionals that it was my parenting at fault; that somehow I was a weak mother who had allowed my son to trample all over me!

    The reality is that we have had some very tough times as a family but slowly we have turned things round.  Learning about PDA and some of the techniques used to manage demand avoidance has given me the confidence to negotiate with my son but it is far from straightforward.  Whilst my son needs routine (without it he becomes even more anxious) I also have to be creative when dealing with his refusal to comply.  Simply telling him to do something doesn’t work and I have to resort to different techniques to motivate him which varies from day to day depending upon his level of anxiety and how his autism is affecting him.

    One of the more successful techniques is negotiation and this often takes the form of guided choice ie I give my son two or three things to choose from.  This has worked well as it has enabled our son to feel in control and for us to achieve a particular outcome.  I have also tried to adjust my behaviour so that I don’t come across too demanding because I know my son will pick up on this and feel under a lot of pressure as a result.  This isn’t to say I don’t set boundaries though.  I do but I try and establish boundaries through explanation and/or negotiation rather than “you must do as I say” for example.  However, it is not easy.  There are days when the slightest demand will create a backlash and then there are the days when our son is unable to interact with us.  These are the days when I simply back off and let him unwind.  Any more pressure will simply overwhelm him to the point of meltdown.

    As to whether my son has  PDA I can not say because people with an autism spectrum disorder can also have demand avoidance issues as well.  Nevertheless learning about PDA has enabled me to acquire a new set of skills which I may not have acquired if I had just focused on the strategies for autism.

    However, challenges remain in that professionals who come into contact with my son don’t understand what lies behind his controlling behaviour and often there is a sense that they are blaming him for having a character flaw.  This upsets me a lot.  There is nothing worse than hearing your child being coldly described as manipulative and controlling.  Understanding what lies behind these behaviours is so important because once you see that it is anxiety that is driving the behaviour then you can become more sympathetic and adopt the right approach.

    This is why I urge professionals (particularly teachers and teaching assistants) to learn more about PDA as well as autism because it is likely that they will meet children with some degree of PDA.  For parents who also have children with some or all of the symptoms  of PDA, I would also encourage you to read up on PDA and explore some of the strategies that PDA parents use.  As I have found, it is reassuring to know you are not alone dealing with this sort of challenging behaviour and that there are some effective strategies out there.

    For further reading try these resources:-

    Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals – this book was recommended to me be another autism parent and I wasn’t disappointed.  The book offers a complete overview of Pathological Demand Avoidance Syndrome (PDA) and provides practical advice for overcoming the difficulties experienced at different stages of a child’s life and into adolescence and adulthood.  Case studies are used throughout the book and there is also a list of resources for further information and advice.  Essential read for anyone caring for and working with children with PDA, autism or other behaviour issues that do not respond to ordinary parenting techniques.

    Cerebra – what is pathological demand avoidance (PDF) – http://www.cerebra.org.uk/SiteCollectionDocuments/PDA.pdf

    NAS – PDA, Pathological Demand Avoidance

    The PDA Contact Group - advice and information for those living and working with a child or adult with PDA.

    The PDA Resource – an excellent list of resources on PDA that is really worth checking out.  Lots on here for everyone.

     

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    4 Responses to Pathological Demand Avoidance – why learning about PDA has helped me to help my son

    1. For some reason I missed this when you first wrote it, but google sent me to it tonight and I’m very glad it did x

    2. Jazzygal says:

      Truly a very informative post. I can see the ‘controlling’ elements here too and amonly starting to see the anxiety. These things can manifest so differently in each child…

      xx Jazzy

    3. It’s so true that there are those (even family) who just think it’s because we’re weak. I feel very blessed to have had 2 children, one of whom I can parent in a ‘normal’ way, as it’s only really because of this that I am able to see and accept the differences. Even if we don’t actually get the PDA diagnosis for our girl, I know and have been able to research how to help her – and it is most definitely not by trying to force her to do anything. I suspect there are so many more out there with PDA and I really want to get these 3 little letters known, so thanks for joining in and helping x

      • Aspie in the family says:

        This has been an issue I’ve been wanting to write about for a while but I rarely have the time these days to manage my blog properly. As you have said, I reckon there are many with PDA that are either undiagnosed or who have their difficulties wrongly diagnosed as something else. Hopefully as research gathers pace and more people become aware of this syndrome then people can get the proper diagnosis and help. Deb

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