THE POLITICS OF DAP: A CASE STUDY OF NATIONAL AUTISTIC SOCIETY SUPPORTING THE CONSTRUCT.
This has been updated to add a quote.
Around 18 months ago, I wrote a blog post highlighting my opinions on Demand Avoidance Phenomena (DAP, commonly known as PDA). In that blog post I noted the possible politics behind the DAP construct, as some view it as Newson’s reply to Wing’s Triad of Impairment. For more details see the original blog post below:
Additionally, since I wrote that original blog post in March 2018, my views on DAP have evolved significantly, for my latest thoughts on DAP can be accessed through this blog post below:
And through my academic work, like this conference talk on DAP ethics:
National Autistic Society (NAS) and DAP.
Much is made in the pro DAP literature of the National Autistic Society’s (NAS) support for DAP, for instance see Stuart et al (2019), Fidler (2019) and Woods (2018). Ruth Fidler in her recent book chapter has stated that NAS updated their website and information sources as part of the autism spectrum since 2015. As will become clear by the end of this blog post, Fidler is being misleading with the 2015 date as NAS has supported DAP for over a decade. We will next explore the clinical and scientific issues around subtyping autism.
Clinical and Scientific Issues of subtyping autism.
It is recognised in the autism literature that it is almost impossible to divide the autistic population. Clinically, this has been recognised by Lorna Wing, Judy Gould and Chris Gillberg in 2010. It needs to be noted the latter 2 are DAP supporters. Specifically, they note that autistic persons frequently transition between subtypes and that it can be extremely challenging to draw the border between subtypes (Wing et al, 2011). Francesca Happé, another DAP supporter in 2011 also noted the challenges on subtyping autism, noting that all autism subtypes lack validity and similar treatment outcomes. It also needs to be noted that Happé presented at the first NAS DAP conference in 2011, partly on the evidence base DAP would need for it to be considered (not necessarily accepted) by the arbiters of the clinical manuals; the American Psychiatric Association (APA) and the World Health Organisation (WHO) (Christie et al, 2012). Wing and Gould were NAS leading autism experts at the time of 2010. It is not unreasonable to assume then that the PDA supporters are aware of the issues subtyping autism. Next we have to establish a timeline of key events.
A critical timeline.
From what I know Lorna Wing is the first DAP critique in print in her 2002 book. She wrote a rather compelling paragraph challenging the specificity of DAP and if it is even syndrome (Wing, 2002, p30). While discussing the topic of subtyping autism, Wing also notes the same issues as found in Wing et al (2011) and likewise was against dividing autism. This creates a timeframe of when Wing had consistent views on the topic of autism subtypes, from 2002 to 2010 when the Wing et al (2011) was first published online. This matters as we know NAS has been supporting DAP since at least 2008, when they updated their website to provide information on DAP (PDA Society, 2016). Why would NAS start supporting DAP, apparently against the view of Wing?
It appears that it was not due to an increase of evidence for DAP. While Newson and colleagues (2003) did publish their article in 2003, a closer inspection reveals that the studies contained in this paper seem to have been conducted before Wing’s book was published in 2002; for example see Newson and Le Merechal (1998). The DAP literature base before 2008 consisted of 4 articles, which only one was a case study that does not substantially add to the DAP empirical evidence of Newson et al (2003) (the case study is Jones, 2005). The first major research into DAP after 2008 is the research to validate the EDA-Q (O’Nions et al, 2014), which was first published online in 2013. Considering Wing was against subtyping autism in 2010, this tells us that it is unlikely that Wing would have changed her views on DAP before NAS supported it in 2008. Accounting for this information and the problems dividing autism, it is logical to conclude that the charity is supporting DAP against the wishes of Lorna Wing and for political grounds.
Other relevant information.
Well if Wing was critical of DAP, what about NAS’s other leading autism expert from the time, Judy Gould? This is where it gets interesting, she has gone on to produce numerous works supporting DAP (Gould and Ashton-Smith, 2011; O’Nions et al; 2014; 2016; 2018), some consider Gould to be a leading expert on DAP. Like Happé, Gould spoke at the first NAS DAP conference in 2011, she has same observation as Wing about DAP lacking specificity:
“Dr Gould pointed out that features of PDA can be found in children and young people across the autism spectrum” (Christie et al 2012, p 187)
It should also be noted that NAS started supporting DAP as a form of autism at a time when its’ literature is there is debate on if DAP could be forms of Personality Disorder or Attachment Disorder (Christie, 2007). Pertinently, Wing’s observations on DAP lacking specificity and doubts it being a distinct syndrome were echoed by Elena Garralda’s commentary on Newson’s research (2003). It begs the question, what was so important to NAS in 2008, that it is risking its reputation on supporting DAP? Let alone, why NAS continues to risk its’ reputation on supporting DAP?
Final key point to this topic is that Wing et al (2011) note that some persons diagnosed with Asperger’s Syndrome prefer that label over other terminology. However, such concerns did not factor into the decision to retain autism subtypes. What matters to the APA, is the scientific evidence for the construct, see Happé (2011). Some are making similar arguments to how DAP benefits a person in how they understand themselves. While I accept this is a credible point, it not a reason to justify the use of the DAP construct, we are in age of autism diagnostic practice where construct validity matters above other factors. On a personal level, as a neurodiversity supporter, I want there to be good quality research and clinical practice for autism (I know this would shock some opponents to neurodiversity). I support the stance taken by the APA.
My Latest Articles.
I have 2 new articles published in the journal, Autonomy, the Critical Journal of Interdisciplinary Autism Studies. The first is a DAP one that was submitted 2 years ago. The second is co-authored with Dr Mitzi Waltz and was written last summer. These are:
- Pathological Demand Avoidance: Is it time to move beyond the pathological need to not to develop more inclusive pedagogical practices?
- The strength of autistic expertise and its implications for autism knowledge production: A response to Damian Milton.
Autism Policy and Practice.
The autistic-led good practice journal, Autism Policy and Practice has published its first edition under the current editor team. This can be accessed via the link below:
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., Duncan, M., Fidler, R. & Healey, Z. (2012). Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals. London: Jessica Kingsley Publishers.
Fidler, R. (2019). Girls who “can’t help won’t”: Understanding the distinctive profile of Pathological Demand Avoidance (PDA) and developing approaches to support girls with PDA. In: Carpenter, B., Happe, F., & Egerton, J (Eds.), Girls and Autism: Educational, Family and Personal Perspectives (pp. 93-101). Abbingdon, Routledge.
Garralda, E. (2003). Pathological demand avoidance syndrome or psychiatric disorder? Archives of Disease in Childhood (online only article). Retrieved from: https://adc.bmj.com/content/88/7/595.responses#pathological-demand-avoidance-syndrome-or-psychiatric-disorder (Accessed 25 October 2019).
Happé, F. (2011). Criteria, Categories, and Continua: Autism and Related Disorders in DSM-5. American Academy of Child and Adolescent Psychiatry, 50(6), 540-542.
Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? Girls and women on the autism Spectrum. Good Autism Practice, 12(1), 34-41.
Jones, E. (2005). Developing independence through the use of a colour-coded system with a fifteen-year-old pupil with a diagnosis of Pathological Demand Avoidance Syndrome (PDA) in a mainstream school. Good Autism Practice,
Newson, E., & Le Merechal, K. (1998). Pathological Demand Avoidance Syndrome: Disciminant functions analysis demonstrating its essential differences from autism and Asperger’s Syndrome (Online Conference Paper). Retrieved from https://www.autismeastmidlands.org.uk/wp-content/uploads/2016/10/PDA-discriminant-functions-analysis.pdf (Accessed 17 July 2019).
Newson, E., Le Maréchal, K., & 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., Christie, P., Gould, J., Viding, E., Happé, F. (2014a). 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., Gould, J., Christie, P., Gillberg, C., Viding, E., & Happé, F. (2016a). Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO). European Child & Adolescent Psychiatry, 25(4), 407-419.
O’Nions, E., Viding, E., Floyd, C., Quinlan, E., Pidgeon, C., Gould, J., & Happé, F. (2018) Dimensions of difficulty in children reported to have an autism spectrum diagnosis and features of extreme/‘pathological’ demand avoidance. Child and Adolescent Mental Health, 23(3), 220-227.
PDA Society. (2016). Pathological Demand Avoidance Syndrome: A Reference Booklet for Health, Education and Social Care Practitioners (Online document). Retrieved from: https://www.pdasociety.org.uk/professionals/awareness-matters-booklet (Accessed 25 October 2019).
Stuart, L., Grahame, V., Honey, E., and Freeston, M. (2019). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child and Adolescent Mental Health, DOI: 10.1111/camh.12336
Wing, L. (2002). The Autistic Spectrum: A guide for parents and professionals. London: Constable & Robinson Limited.
Wing, L., Gould, J., & Gillberg, C. (2011). Autism spectrum disorders in the DSM-V: Better or worse than the DSM-IV? Research in Developmental Disabilities, 32(2011), 768-773.
Woods, R. (2018). Critical Reflections on the Pathological Demand Avoidance debate: A response to The Practice MK blog and discussion. (Online blog). Retrieved from: https://rationaldemandavoidance.com/2018/05/15/critical-reflections-on-the-pathological-demand-avoidance-debate-a-response-to-the-practice-mk-blog-and-discussion/ (Accessed 25 October 2019).