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lizzieo

Calling parents of children with ASD/ ADHD/ emotional behavioural difficulties (aged 6-17): research into demand avoidance

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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 :o)

 

______

http://www.iop.kcl.ac.uk/staff/profile/default.aspx?go=12616

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Hi LizzieO -

 

Are you interested in responses from people who are sceptical about the causes of PDA type behaviours and the subjectivity of research and theories defining them? If so, I might fill in a form, but if not your research is inherently flawed.

 

I'm not sure it isn't already, because the liklihood is you'll be asking parents about incidents of behaviour that are recognised as 'potentially PDA' in a subgroup of the population where behavioural issues that would be 'potentially PDA' are much more likely (for a variety of reasons that have nothing to do with PDA) anyway, so if you compare that 'average' to a national 'average' of PDA-like behaviours the result will be a foregone conclusion(?) That doesn't 'prove' anything about PDA and a relationship with any of the other disorders mentioned, it just shows that traits of those disorders can be labelled with the new label devised by Elizabeth Newson which has enabled her to further her career in a field where specialism can bring very large rewards.

 

My son at, say, six, would have probably scored very highly on a 'PDA-like behaviour' checklist, but lots of hard work and effort on both our parts would now mean he doesn't. If we hadn't put in that hard work and effort then he would undoubtedly still score very highly on a 'PDA-like behaviour' checklist.

 

The only way you can get an accurate measure of whether the PDA-behaviours are 'real' or a manifestation of something else like environmental factors is to undertake a long term study where all interventions and responses are fully monitored, standardised and taken into consideration for both the 'control' group and the sub-group from which you gather your samples.

 

By definition, if you are asking for parents to come forward whose children

 

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.

 

You are more likely to attract responses from people who suspect, or who are at the very least 'interested' in PDA. That adds another inherent bias to what, if my speculation above is correct, is already an inherently biased piece of research.

 

Having just noticed the link in your post I've had a quick squint at the questionnaire and I can't honestly see anything that wouldn't equally apply to a poorly disciplined, understimulated, controlling, over-indulged child, or to a child who had not yet developed or was compromised in areas of 'theory of mind'. Children who were victims of abuse or deprivation would also probably present with similar behaviours. I'm sorry, I know this will probably be interpreted as unsympathetic and a case of

 

parents find[ing] that support for children with this profile is lacking and their concerns are not taken seriously.

 

but I do think that any diagnosis should be based on holistic assessment rather than just looking at behaviours in isolation. I do know that for any parent who feels their child has PDA my views seem judgemental, but so too is their own subjective analysis of (i.e.) their parenting skills, their home environment, their relationship with their child, their consistency and all of the other factors that a true holistic assessment would investigate. I know also that autism is a medical condition that it assessed on behaviours, but that at least does entail a wide range of behaviours (or at least it used to) across a whole spectrum of interactions and situations rather than just expressly looking at specific areas that can be explained by many other environmental factors.

 

As I've said, I am aware that my views could be potentially upsetting for some parents, but trust anyone reading this will appreciate they are not 'judgements' of any individual parent or child or a generalisation/assumption that PDA can only arise from the factors I've queried.

I just think that currently too much is assumed rather than investigated, and from looking at this questionnaire that the same assumptions are inherent within both the questions and the manner in which it is being distributed and conducted. Sorry :(

 

L&P

 

BD

Edited by baddad

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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

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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 again Liz -

 

Good to see you at least acknowledge the possibility (at least here: [my italics]) that bad parenting (and other external/environmental considerations - please don't make it a 'four legs good two legs bad' either/or) could be factors. That's at least a step in the right direction because usually when that possibility is suggested people seem to get very angry/aggressive and go out of their way to avoid it and demand that others do too!

 

You've said that the process of diagnosis is an holistic one, and that this does consider all other potential causes. Do you have any information on how parent/child interactions, family environments etc etc are observed so they can be ruled out, the time periods over which they are undertaken, and the method of non-intrusive (presumably secret, otherwise any conclusions would be invalid) observation? I think if wider acceptance/acknowledgement of the condition is the target outcome, then these considerations have to be a fundamental objective of any holistic assessment, and reassuring the sceptics (not just me, but professional sceptics too, seeing as the theorist behind the diagnosis is seeking DSM V classification) on these key points an imperative.

 

L&P

 

BD

Edited by baddad

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Hi lizzieo

 

I was going to do the questionnaire but the link doesn't work. Am I too late?

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