MY LATEST THOUGHTS ON THE UTILITY OF THE DEMAND AVOIDANCE PHENOMENA CONSTRUCT: A RESPONSE TO RECENT PETITIONS.

MY LATEST THOUGHTS ON THE UTILITY OF THE DEMAND AVOIDANCE PHENOMENA CONSTRUCT: A RESPONSE TO RECENT PETITIONS.

 

Introduction.

This is a response to a couple of petitions calling for the UK and Local Governments to officially recognise and diagnose DAP.

This petition “Raise awareness and make Pathological Demand Avoidance a recognisable diagnosis”:

https://petition.parliament.uk/petitions/261786?fbclid=IwAR3JDc7PP4EpFk-ug1FpS57kUW_QBHPt6SZIY0PRK5qkkVysr8P_UkLheuE

And this petition “A toolkit for working with the Pathological Demand Avoidance profile of ASD”:

http://www.parliament.scot/gettinginvolved/petitions/PE01700-PE01799/PE01732_BackgroundInfo.aspx

This response is based off an email I sent to someone asking me to see the benefits to the DAP label.

 

Participatory Research.

From a participatory research perspective, there is little to no justification for DAP construct as it is not a recognised research priority of the autistic population (Woods 2017). Most autistic persons do not want autism being subtyped or even in the diagnostic manuals. What we tend to want (and most other stakeholders) is better support and services, particularly inclusive education practices; for more information, see Woods (2019b).

 

Scientific Case.

From a scientific perspective, there is simply not enough evidence to say what DAP is as it lacks good quality evidence (Green et al 2018a; Milton 2017). Furthermore, DAP requires such high calibre evidence to justify its recognition in policy and practice (Fletcher-Watson and Happé 2019; Woods 2019a). Crucially, we know Autism is almost impossible to subtype (Fletcher-Watson & Happé 2019; Happé 2011; Wing 2002; Wing, Gould and Gillberg 2011). No-attempt to subtype autism has ever succeeded and subtypes should be collapsed into a single autism category to reduce stigma (Happé 2011). Most telling of all is that the DAP Lobby is aware of this information as Happé, Gould and Gillberg have all written about this outside of the DAP literature. What that tells us is that DAP needs an exceptional evidence base to be accepted for clinical practice or the main diagnostic manuals. If future research indicates DAP is distinct to autism, this tells us it is not part of the autism spectrum and there is good case to remove DAP from the autism spectrum (Woods 2019a; 2019b). This is not surprising DAP has no specificity and all its behaviours and cognitive patterns are found in other conditions (Garralda 2003; Green et al 2018a; Wing 2002), for instance see Woods (2018) for how DAP cognitive style overlaps Obsessive Compulsive Disorder.

 

Prognosis and overlapping strategies.

Even if you look at the DAP strategies and prognosis; its’ approaches are similar or identical to autism. The DAP approaches are argued to be beneficial to many persons, including non DAPers (Milton 2017; Woods 2019c). Evidence based strategies similar to DAP ones have been used for years with autistic persons, independently of DAP label (Green et al 2018a; 2018b). Its strategies overlap many other approaches and pedagogies, such as Dielectric Therapy and the SPELL Framework (Milton 2014; Woods 2019b). DAP approaches include some autism approaches like visual communication methods (Woods 2019c).

 

One should also ask do DAPers and autistic persons both benefit from each other’s strategies. Firstly, autistic persons benefit from being in charge (Woods 2019b). Secondly, autistic persons do have a sense a humour (Bertilsdotter-Rosqvist 2012). Thirdly, distress/ challenging behaviours are exacerbated by an authoritarian approach to us (Gore et al 2019). The DAPers themselves benefit from routines when they choose them (Durà-Vilà G and Levi 2019; Fidler and Christie 2019), this is reflected in Newson’s original research and DAP recent literature that indicated 60% of DAPers adhered to routines (Newson & Le Merechal 1998). There is literature emerging saying a collaborative approach benefits all children such as using declarative language (Loong 2019) and giving a limited number of options is an effective approach to reducing childhood obesity (Boseley 2019). When accounting for such information it is clear that clinically, there is little difference in approaches that are effective for both DAPers and autistic persons.

 

Summarising.

I do accept that the lived experience of those who identify as DAPers etc. (Woods 2018; Woods 2019b). I do recognise the DAPers and DAP carers are both vulnerable groups, which need appropriate support. Overall, I do not see the need for the DAP label and I agree with Garralda (2003) and Green et al (2018b) that DAP is leading to confusion. Out of the 3 topics discussed here, it is the overlapping approaches that are effective to both autistic persons and DAPers that mostly lead to still think DAP is superfluous. This is because even if DAP never has construct validity, it is unlikely to be accepted even on political grounds.

 

My Latest DAP Research.

I have delivered 2 talks on Demand Avoidance Phenomena at recent Critical Disability Studies events:

1)         An Updated Interest Based Account (Monotropism theory) & a Demand Avoidance Phenomenon discussion.

https://www.researchgate.net/publication/332727790_An_Updated_Interest_Based_Account_Monotropism_theory_a_Demand_Avoidance_Phenomenon_discussion

2)         Demand Avoidance Phenomena (Pathological Demand Avoidance): an ethical challenge to its orthodoxy.

https://www.researchgate.net/publication/333682762_Demand_Avoidance_Phenomena_Pathological_Demand_Avoidance_an_ethical_challenge_to_its_orthodoxy

Two of these talks supplement the DAP deconstruction Critical Reflections on the Pathological Demand Avoidance debate: A response to The Practice MK blog and discussion, which can be accessed here:

https://rationaldemandavoidance.com/2018/05/15/critical-reflections-on-the-pathological-demand-avoidance-debate-a-response-to-the-practice-mk-blog-and-discussion/

Besides book reviews, 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:

1)         Pathological Demand Avoidance: Is it time to move beyond the pathological need to not to develop more inclusive pedagogical practices?

http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/CO3/html

2)         The strength of autistic expertise and its implications for autism knowledge production: A response to Damian Milton.

http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/CO2/html

 

Autism Policy and Practice Autistic-led good practice journal.

Here is a link to an open access good practice journal that I and others are restarting:

https://www.openaccessautism.org/index.php/app/about/submissions#authorGuidelines

 

Journal’s editors are presently working hard for an August/ September publishing of the first edition.

 

References.

Bertilsdotter-Rosqvist, H. (2012). The politics of joking: narratives of humour and joking among adults with Asperger’s syndrome. Disability & Society, 27(2), 235-247.

https://www.tandfonline.com/doi/abs/10.1080/09687599.2011.644933

Boseley, S. (2019, 01 May). Leeds becomes first UK city to lower its childhood obesity rate (Newspaper article). Retrieved from: https://www.theguardian.com/world/2019/may/01/leeds-becomes-first-uk-city-to-lower-its-childhood-obesity-rate (Accessed 17 July 2019).

Durà-Vilà G and Levi, T. (2019). Me and My PDA: A Guide to Pathological Demand Avoidance for Young People. London: Jessica Kingsley Publishers.

Fidler, R., and Christie, P. (2019). Collaborative Approaches to Learning for Pupils with PDA: Strategies for Education Professionals. London: Jessica Kingsley Publishers.

Fletcher-Watson, S., and Happé, F. (2019). Autism: a new introduction to psychological theory and current debate, 2nd Edition. Abingdon-on-Thames, UK: 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  (Accessed 17 July 2019).

Gore, N., McGill, P., & Hastings, R. (2019). Making it Meaningful: Caregiver Goal Selection in Positive Behaviour Support. Journal of Child and Family Studies, 28(6), 1703-1712.

https://link.springer.com/article/10.1007%2Fs10826-019-01398-5

Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., & Baird, G. (2018a). Pathological Demand Avoidance: symptoms but not a syndrome. Lancet Child & Adolescent Health, 2(6), 455–464.

https://www.sciencedirect.com/science/article/abs/pii/S2352464218300440?via%3Dihub

Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., & Baird, G. (2018b). Demand avoidance is not necessarily defiance: Authors’ reply. Lancet Child & Adolescent Health, 2 (9), e21.

https://www.sciencedirect.com/science/article/abs/pii/S2352464218302219

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.

https://jaacap.org/article/S0890-8567(11)00268-1/fulltext

Loong, O. (2019). Supporting Students with Pathological Demand Avoidance. Masters, City University of Seattle.

Milton, D. (2014). So what exactly are autism interventions intervening with? Good Autism Practice, 15(2), 6-14.

http://www.bild.org.uk/our-services/journals/gap/

Milton, D. (2017). “Natures answer to over-conformity”: deconstructing Pathological Demand Avoidance. In Milton, D. (Ed.), A Mismatch of Salience: Explorations of the nature of autism from theory to practice (pp 27-38). Hove, UK: Pavilion Publishing and Media Limited.

https://kar.kent.ac.uk/62694/431/Natures%20answer%20to%20over%20conformity.pdf

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).

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.

https://www.sciencedirect.com/science/article/abs/pii/S0891422210002647

Woods, R. (2017). Pathological demand avoidance: my thoughts on looping effects and commodification of autism. Disability & Society, 34(5), 753–758.

https://www.tandfonline.com/doi/full/10.1080/09687599.2017.1308705

Woods, R. (2018). PDA by PDAers, from anxiety to avoidance and masking to meltdowns. Disability & Society, 33(9), 1547-1549.

https://www.tandfonline.com/doi/full/10.1080/09687599.2018.1504482

Woods, R. (2019a). An Updated Interest Based Account (Monotropism theory) & a Demand Avoidance Phenomenon discussion (Online Conference Paper). Retrieved from: https://www.researchgate.net/publication/332727790_An_Updated_Interest_Based_Account_Monotropism_theory_a_Demand_Avoidance_Phenomenon_discussion (Accessed 17 July 2019).

Woods, R. (2019b). Demand Avoidance Phenomena (Pathological Demand Avoidance): an ethical challenge to its orthodoxy (Online Conference Paper). Retrieved from: https://www.researchgate.net/publication/333682762_Demand_Avoidance_Phenomena_Pathological_Demand_Avoidance_an_ethical_challenge_to_its_orthodoxy (Accessed 17 July 2019).

Woods, R. (2019c). Pathological Demand Avoidance: Is it time to move beyond the pathological need to not to develop more inclusive pedagogical practices? Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(6).

http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/CO3/html

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1 Comment

  1. A point of clarification. I consider the use of “authoritative” approaches in the Boseley (2019) is the same as the collaborative approaches in Fidler and Christie (2019). This is as both approaches involve providing the children/ young persons with a limited number of options that are decided by the adult. Thus the child has an illusion of control, while it is actually the adult that is in control of the situation by providing boundaries from the limited number of options. So when I use “authoritative” approach above can lead to exacerbate distress behaviours, it is because I “authoritarian” approaches as argued by Boseley (2019).

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