Who’s interested in a Pathological Demand Avoidance (PDA) Research Group?
Who’s interested in a Pathological Demand Avoidance (PDA) Research Group?
What PDA is?
Pathological Demand Avoidance (PDA) was initially proposed by Elizabeth Newson in 1980, she put forward the following behavioural profile: Passive early history, resistance and avoid ordinary demands of life using strategies which are socially manipulative, superficial sociability; lacking sense of pride and shame, easily switches mood and can appear impulsive due to need for control, comfortable in role play, language delay, seems result of passivity & obsessive behaviour with interests based on people (Newson et al 2003). PDA’s contested ontological status is a factor in it being controversial (Christie et al 2012; O’Nions et al 2014). Particularly its varied ontologies are; it is a distinct pervasive developmental disorder (Newson et al 2003), part of the autism spectrum, complex interplay between other conditions (Langton and Frederickson 2016), and the commodification of autism (Woods 2017). The PDA behaviour profile overlaps many common autism comorbidities such as: autism, attachment disorder (Christie et al 2012; Milton 2013), oppositional defiant disorder (ODD), anxiety disorder (Langton and Frederickson 2016), and attention deficit hyperactivity disorder (ADHD) and conduct disorder (Gillberg et al 2015). With PDA being a form of behaviourism, there is a distinct possibility the behaviour profile is conditioned into PDAers (those identified as having PDA).
What is PDA’s status?
PDA as a proposed pervasive developmental disorder is currently not in the 2 main diagnostic manuals: Diagnostic and Statistical Manual of Mental Disorders 5th Edition and International Statistical Classification of Diseases and Related Health Problems 10th Revision used to diagnosis autism (O’Nions et al 2014; O’Nions et al 2016; Woods 2017). It should not be diagnosed under NICE guidelines and it is not a recognised as a SEND label (Langton and Frederickson 2016), In contrast to this it is argued that a PDA diagnosis is needed to provide better support and understanding to persons, therefore a wider debate on PDA is distracting (Christie 2007; Christie et al 2012). However a PDA diagnosis does not ensure understanding or support from institutions and organisations (Woods 2017). The PDA literature acknowledges that the UK education system is needs based and not labels based (Langton and Frederickson 2016); thusly PDA is not needed to access support or services and thereby insisting on a PDA diagnosis can be viewed as creating a social barrier to access support. These flaws in the utility of PDA have resulted in PDA typically being privately diagnosed as autism + PDA traits and much angst amongst PDA parents striving for support for their children.
Current nature of PDA debate?
Since 2003 years there has been a steady increase in the amount of PDA articles being published, with at present there being around 20 published articles from book reviews to empirical research. Pertinently most of the research is done being conducted is by clinicians with a distinct bias towards PDA as part of the autism spectrum & awaiting evidence to support clinical based understandings (Christie et al 2012). This stance has been supported by large parent-led created charities of the National Autistic Society and PDA Society (O’Nions et al 2014; O’Nions et al 2016; PDA Society 2018a; Woods 2017), with interest in PDA partly driven by parents (Christie 2007). Additionally PDA is supported by the Autism Education Trust (AET) (O’Nions et al 2014; O’Nions et al 2016), with its non-statutory guidelines which are Phil Christie’s (2007) article being reprinted. It appears that AETs support for PDA is due to Phil Christie involvement on key AET boards (Christie 2018) due to there being no empirical evidence that these adjustments work. This has contributed to the silencing of the autistic voice and other critical opinions in the PDA debate. As there is an echo chamber effect with PDA increasingly being seen to exist and seeking evidence to support this view and for its acceptance into the diagnostic manuals (Christie et al 2012). Despite this there are emerging autistic literature running contrary to the dominant discourses (Milton 2013; Milton 2017; Woods 2017).
What future PDA research could we do?
At this moment in time I am following on from Milton (2013), by exploring PDA as a biopower and investigating the research question “Who needs to be in control?” out of its stakeholders; initial results show there is a power struggle favouring parents, clinicians and practitioners over autistic persons as a result of “PDAers” being hard work places considerable pressures on those around them. This research can be taken further to look at other data sets such as online information sources; in particular stigma research could be fruitful as most Goffman’s (1963) social deviant traits are found in the PDA diagnostic criteria & how PDAers frequently do not respond well to traditional autism adjustments. Other precise examples include:
1) A review article critiquing current PDA research for the journal Autism, Damian Milton has said this is possible co-authoring with staff at the Tizard Centre and can be done after the Participatory Autism Research Collective (PARC) PDA event in spring 2018.
2) Under The Autism Act 2009 there should be a national database of autistic people. We can use Freedom Of Information requests to find out which Local Authorities and NHS trusts are recognising PDA and if they have contributed "PDAers" to the national autism database.
3) There is a petition going on for health workers to recognise PDA:
All signatories are publically displayed by their MP constituency (as an aggregate). We can compare each parliament constituency petition signatures against its socio-economic data to see if PDA supporters are typically from higher socio -economic groups which; is plausible due to how PDA is often privately diagnosed. We can also map the data against ethnicity groups and local PDA support groups from the list below:
https://www.pdasociety.org.uk/resources/blogsandfacebookgroups (PDA Society 2018b).
4) I & Damian Milton are proposing a thought experiment of what would happen if different stakeholders (probably autistic population) were to arbitrarily pick several traits associated with autism and to propose it as a distinct syndrome; working title for the thought experiment is “Milton’s Syndrome”, as a subversion of how syndromes can be named.
Here is a list of topics which are unaddressed in the PDA literature:
- Ableism and internalised ableism in autism community.
- PDA can be used to investigate effects of different autism discourses have on a person’s perception of an autistic person.
- PDA in ethics discourses.
- PDA in good practice discourses.
- PDA and the neurodiversity movement.
- PDA in Special and Education discourses.
- Should PDA be diagnosed?
The advantage with PDA, with it being a proto label there is dearth of research conducted, it is fertile ground for almost any research a person could wish to do. I am open to discussions on appropriate course of action.
I look forward to hearing from you.
My contact email is:
Autism Policy and Practice.
Small plug for an autistic led (emancipatory) good practice journal Autism Policy and Practice that I others are restarting, the call for papers should be within the next month or 2:
Christie, P., 2007. The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice. Good Autism Practice, 8 (1), 3-11.
Christie, P., et al., 2012. Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals. London: Jessica Kingsley Publishers.
Christie, P., 2018. Autism Associates (online). Nottingham: Autism Associates. Available at: http://www.autismassociates.co.uk/ (Accessed 05 January 2018).
Gillberg, C., et al., 2015. Extreme (“pathological”) demand avoidance in autism: a general population study in the Faroe Islands. Journal of European Child and Adolescent Psychiatry, 24 (8), 979–984.
Goffman. E., 1963. Stigma: Notes on the Management of Spoiled Identity. London: Penguin Group.
Langton, E. and Frederickson. N., 2016. Mapping the educational experiences of children with pathological demand avoidance. Journal of Research in Special Educational Need, 16 (4), 254–263.
Milton, D., 2013. ‘Natures answer to over-conformity’: deconstructing Pathological Demand Avoidance (online). Available at: http://autismexperts.blogspot.co.uk/2013/03/natures-answer-to-over-conformity.html (Accessed 11 March 2018).
Milton, D., 2017. Educational discourse and the autistic student: a study using Q-sort methodology. In: Milton, D. A Mismatch of Salience: Explorations of the nature of autism from theory to practice. Hove: Pavilion Publishing and Media Limited, 2017, pp 163-179.
Newson, E., Le Maréchal, K. and David., C, 2003. Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88 (7), 595–600.
O’Nions, E., et al., 2014. Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q): preliminary observations on a trait measure for Pathological Demand Avoidance. Journal of Child Psychology and Psychiatry, 55 (7), 758–768.
O’Nions, E., et al., 2016. Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO). European Child & Adolescent Psychiatry, 25, 407–419.
PDA Society., 2018a. About us. United Kingdom: PDA Society. Available at: https://www.pdasociety.org.uk/about-pda-society/about-us (Accessed 11 March 2018).
PDA Society., 2018b. Blogs and Facebook groups. United Kingdom: PDA Society. Available at: https://www.pdasociety.org.uk/resources/blogsandfacebookgroups (Accessed 11 March 2018).
Woods, R., 2017. Pathological demand avoidance: my thoughts on looping effects and commodification of autism. Disability & Society, 34 (5), 753-758.