lizzieo

Dear Baddad, I would be very interested in your responses for your son regardless of what your view of PDA is. You are absolutely correct in stating that many of the populations I am interested in studying do overlap a lot at the behavioural level, so would score pretty high on the questionnaire. What I hoped when I designed the questionnaire is that children with PDA score even higher on it than other groups which partially overlap(e.g. ASD, ADHD, ODD). There may well be people in the Asperger/ASD group who score very high, but I would expect that the PDA group will do so more consistently (in particular for high functioning individuals). But I don't know that for sure yet, which is why I am collecting the data. I think this is a strength of the approach. The reason that I am making this questionnaire is that I am going to study children with this behavioural profile and see whether they differ from autism/ conduct problem children at the cognitive level (using tasks measuring things like theory of mind, awareness of own emotional states, social reward and sensitivity to others' emotional states). What I am hoping is that my group who score very high on the EDA-Q will show a different profile on these cognitive measures compared to my ASD group. Even if there is some overlap (e.g. on Theory of Mind), because the behaviour in PDA is so different from behaviour typical of the majority of individuals with an ASD, I expect that the cognitive profile will differ too. In my experience of attending the recent National Autistic Society conference on PDA in January, there are many people for whom finding out about PDA has been extremely important in obtaining the right sort of school environment and educational approach for their child. Also, because it has been recognised that the child is driven to avoid demands, they are re-assured that it is not their fault, they have not caused the behaviour, and they can adapt to it. In any diagnostic assessment, all other potential causes of this behavioural profile would be considered - a holistic approach is taken. However, it is important that clinicians recognise this profile does not necessarily reflect bad parenting, and could be due to the child's pre-disposition. Liz

Hi everyone, I am a PhD student at the Institute of Psychiatry, part of King's College London. I am writing to ask for your help with a postgraduate research project I am conducting comparing children with diagnoses including autism spectrum disorders, ADHD and emotional and behavioural difficulties, to children with “Pathological Demand Avoidance Syndrome” (PDA) on a questionnaire completed by parents. PDA is a term applied to children who persistently resist and avoid even simple demands and requests. If pressed to comply, they may behave in extreme ways, such as flying into a rage or having a meltdown, or adopting a role or persona. Some are adept at using distraction or provocative behaviour to divert attention away from a demand, and many need to be 'in charge' at all times when interacting with others. Children with PDA often have difficulty judging how to respond appropritely in social situations, being far too bossy and controlling of peers, and not recognising social boundaries or age-appropriate behaviour. They are sometimes said to remind people of autism, though can be much more difficult for parents and schools to cope with. Approximately 50% of individuals with PDA are female. As PDA is not included in official diagnostic manuals (e.g. the DSM-IV), parents find that support for children with this profile is lacking and their concerns are not taken seriously. Research is required to raise awareness of PDA, and discover how best to help children with this profile. I am looking for parents with children aged 6-17 with diagnoses of ASD, ADHD, Oppositional Defiant Disorder or Tourettes etc. to complete the questionnaire, to see whether individuals diagnosed with PDA (or in whom parents suspect it) score higher on the measure than these other clinical groups, who share some features in common with PDA. This questionnaire will be used in research and also made available to clinicians. If you would be willing to take part, or would like to have a look at the questionnaire, please visit my national autistic society recruitment web-page to download a copy. http://www.autism.org.uk/en-gb/get-involved/volunteer/take-part-in-surveys-and-research/research-recruit-people-or-participate/research-projects-children-and-young-people/pathological-demand-avoidance-questionnaire.aspx Thanks for taking the time to read this request. Liz ) ______ http://www.iop.kcl.ac.uk/staff/profile/default.aspx?go=12616