AN OPEN LETTER TO ICD11 PRODUCTION TEAM.

Dear Dr Robert Jakob, Solvejg Bang, MD, Professor Naoko Tajima, Dr William Ghali and Mr Ulrich Vogel.

 

This is an open letter to address an ongoing petition seeking for proposed Pervasive Developmental Disorder (PDD), Pathological Demand Avoidance (PDA) to be entered into the ICD11 (Anon 2018). I feel that there are number of inaccuracies provided in the description of the petition and I address these concerns below by presenting a more nuanced picture of the state of PDA in the UK.

 

What PDA is?

PDA was initially proposed by Elizabeth Newson in 1980 (Gillberg et al 2015), 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 2013a), 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 is argued PDA is part of autism spectrum, because PDDs were called autism spectrum by the UK public & so PDA is allowed to be called part of autism spectrum. Not because PDA is actually autism. (Christie 2007; Christie et al 2012; Christie & Fidler 2015). It is not a recognised as a Special Educational Needs and/ or Disabilities label (Langton and Frederickson 2016), moreover it should not be diagnosed under NICE guidelines; clinicians should diagnose conditions in the diagnostic manuals and PDA can be explained by ODD (Department of Health and Social Care 2018; Packham 2011). Supporting autistic interpretations of Rational Demand Avoidance (Milton 2017) and that the demand behaviour can be caused by trauma (Milton 2013a). With PDA’s behaviour profile overlapping with many common autism comorbidities, it is plausible that some demand behaviour being observed can be due to complex interactions between conditions. It is recognised that different stakeholders have different priorities and perspectives (Milton 2013b; Milton 2017), is also possible that parents and clinicians are seeing what they wish to see in parent dependent measures (O’Nions et al 2014; O’Nions et al 2016).

 

Christie (2007) and Christie et al (2012) advise that a PDA diagnosis is needed to provide better support and understanding to persons, therefore a wider debate on PDA is distracting. However a PDA diagnosis does not ensure understanding or support from people and organisations (Woods 2017).  The PDA literature acknowledges that the UK education system is needs based and not labels based (Langton and Frederickson 2016). Thus, 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 during times of neoliberalism driven austerity (Lehane 2017).

 

Current nature of PDA debate?

Since 2003 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 (listed later). 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 the former generating income from selling PDA as a commodity (Woods 2017). These charities support PDA due to 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 2013a; Milton 2017; Woods 2017). Increasingly, there is criticism of the how PDA is being pushed for inclusion into the diagnostic manuals (Dore 2016; Goodsell and Goodsell 2017; Woods 2017) and problems with key articles are being reported (Dore 2016). The latest critique of PDA is being discussed by Participatory Autism Research Collective (PARC) (Participatory Autism Research Collective 2018) on 15th of May 2018; please contact Damian Milton for more details (Milton 2018). I am in the process of forming a research group to explore PDA as a construction and its operation (Woods 2018).

 

The research groups potential future PDA research?

At this moment in time I am following on from Milton (2013a), 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 (for England) 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:

http://petitionmap.unboxedconsulting.com/?petition=202680

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?

 

 

 

What are the current published PDA articles?

PDA ARTICLES TIMELINE BY YEAR.
YEAR	AUTHOR	TITLE: CAN BE SHORTENED.	JOURNAL.
2003	Newson et al.	Pathological demand avoidance syndrome: a necessary distinction within the PDD.	Archives of Disease in Childhood.
2003	Garalda.	Pathological demand avoidance syndrome or psychiatric disorder?	Archives of Disease in Childhood.
2005	Jones.	Developing independence through the use of a colour-coded system with PDA.	Good Autism Practice.
2007	Christie.	Pathological Demand Avoidance Syndrome: Guidelines for Good Practice	Good Autism Practice.
2011	Harvey	The Educational Issues for the child with a diagnosis of Pathological Demand Avoidance	Good Autism Practice.
2011	Carlile.	Helping your child with PDA to play: eight strategies for PDA.	Good Autism Practice.
2012	Eaton & Banting.	Adult diagnosis of pathological demand avoidance – subsequent care planning	Learning Disabilities Offending
2013	Milton.	‘Natures answer to over-conformity’: deconstructing PDA.	Autism Experts.
2013	Sinson.	Understanding pathological demand avoidance in children: book review.	Educational Psychology in Practice
2014	Saunders.	Understanding pathological demand avoidance in children: book review.	Int Journal of Primary Ed
2014	O’Nions et al.	Development of the EDA-Q for PDA traits measurement.	Child Psychology and Psychiatry.
2014	O’Nions et al.	Pathological demand avoidance: Exploring the behavioural profile.	Autism.
2014	Gillberg.	Public display of affection or pathological demand avoidance?	Child Psychology and Psychiatry.
2015	Gillberg et al.	PDA: a general population study in the Faroe Islands	Eur Child Adolesc Psychiatry.
2015	Reilly et al.	PDA in a population cohort of children with epilepsy: Four case studies.	Research in Dev Disabilities.
2016	O’Nions et al.	Identifying PDA using the DISCO.	Eur Child Adolesc Psychiatry.
2016	Langton and Frederickson	Mapping the educational experiences of children with PDA.	Journal of Research of SEN.
2016	Davis	Can I tell you about PDA: book review.	Good Autism Practice.
2016	Langton and Frederickson	Parents’ experiences of professionals’ involvement for children with PDA.	International Journal Dev Dis.
2017	Trudle et al.	Differentiating between PDA and antisocial personality disorder: a case study.	Learning Disabilities Offending
2017	Woods.	PDA: my thoughts on looping effects and commodification of autism.	Disability and Society.
2017	O’Nions, Happe and Viding.	Extreme/’pathological’ demand avoidance.	BPS DECP Debate 160.

 

I will update this periodically as more articles are published on PDA. It is possible that I am unaware of some book reviews resulting in their omission.

 

Concluding comments on PDA.

Our understandings of PDA are in early stages, hampered by a lack of critical engagement as a construction and operation and the disregarding of autistic perspectives. There are many varying factors contributing to this, from the support of  non-autistic stakeholders to the silencing of critical opinion. Fundamentally we do not know what PDA is & most of its literature is fundamentally flawed in attempts to confirm clinical understandings. Consequently, the PDA literature and its’ debate are not sufficiently developed to warrant its entry into any diagnosis manual. Hopefully in due time we will be answer what specifically is the demand behaviours displayed and the engagement of all autism stakeholders. If you require any further information on PDA or you wish to send a representative to the PARC PDA event, please do not hesitate to contact myself or Damian Milton.

 

Yours faithfully.

 

Mr Richard Woods.

 

Disclaimer.

Some of this text is from a twitlonger seeking to form a PDA research group (Woods 2018).

 

References:

Anon., 2018. WHO Write Pathological Demand Avoidance as a Distinct ASD Subtype in ICD11 Final Version (online). United Kingdom: Change.org. Available at: https://www.change.org/p/dr-robert-jakob-who-write-pathological-demand-avoidance-as-a-distinct-asd-subtype-in-icd11-final-version?recruiter=8395942&utm_campaign=signature_receipt&utm_medium=twitter&utm_source=share_petition (Accessed 22 March 2018).

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., 2018. Autism Associates (online). Nottingham: Autism Associates. Available at: http://www.autismassociates.co.uk/ (Accessed 05 January 2018).

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. & Fidler, R., 2015. Frequently Asked Questions. In: Sherwin, J. Pathological Demand Avoidance Syndrome, Daughter is Not Naughty. London: Jessica Kingsley Publishers, 2015, pp. 308 – 319.

Department of Health and Social Care., 2018. Petition: Raise awareness and understanding of PDA among health care professionals, Government Responded (online). United Kingdom: UK Government and Parliament Available at: https://petition.parliament.uk/petitions/202680?reveal_response=yes (Accessed on 22 March 2018).

Dore, P., 2016. Pathological Demand Avoidance: Does it exist and if so what is it? (online). United Kingdom: Unsafe Spaces. Available at: https://unsafespaces.com/2016/04/03/pathological-demand-avoidance-does-it-exist-and-if-so-what-is-it/ (Accessed 22 March 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.

Goodsell, Dominic. and Goodsell, C., 2017. Pathological Demand Avoidance, PDA (online). United Kingdom: The Practice MK. Available at: https://www.thepracticemk.co.uk/blog/what-is-pathological-demand-avoidance (Accessed 22 March 2018).

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.

Lehane, T., 2017. “SEN’s completely different now”: critical discourse analysis of three “Codes of Practice for Special Educational Needs” (1994; 2001; 2015). Educational Review, 69 (1), 51 – 67.

Milton, D., 2013a. ‘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., 2013b.‘Reversing the vicious circle of psycho-emotional disablism in the education of autistic people’. In: Championing research, educating professionals: how compatible are elitism, inclusion and social justice?  University of Birmingham, pp 127-134.

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.

Milton, D., 2018. Home (online). United Kingdom: Damian Milton. Available at: http://damianmiltonsociol.wixsite.com/dmilton-autism (Accessed on 22 March 2018).

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.

Packham, K., 2011. Autism: recognition, referral and diagnosis of children and young people on the autism spectrum (online). London:  Royal College of Obstetricians and Gynaecologists. Available at: https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0042124/pdf/PubMedHealth_PMH0042124.pdf (Accessed 22 March 2018).

Participatory Autism Research Collective., 2018. The Participatory Autism Collective (online). United Kingdom: Participatory Autism Research Collective. Available at: https://participatoryautismresearch.wordpress.com/ (Accessed 22 March 2018).

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.

Woods, R., 2018. Who’s interested in a Pathological Demand Avoidance (PDA) Research Group? (online) United Kingdom: Twitlonger. Available at: http://www.twitlonger.com/show/n_1sqfdgl (Accessed on 22 March 2018).