A RESPONSE TO HARRY THOMPSON’S 16/01/2019 YOUTUBE VIDEO AND ITS DISCUSSION.
Introduction.
A person who identifies with Demand Avoidance Phenomenon (DAP, commonly known as Pathological Demand Avoidance) named Harry Thompson has produced a video critiquing a talk by Damian Milton on alternative explanations for DAP. I posted a comment critiquing Thompson’s commentary and it has subsequently been deleted. I apologise in advance for any typos, I have limited time to compose and proof read post. Here is a version of my response.
First, a link to Damian Milton’s DAP talk:
https://kar.kent.ac.uk/67064/1/PDA%20and%20alternative%20explanations.pdf
Second, a link to Harry Thompson’s commentary video:
https://www.youtube.com/watch?v=YKA39DoA10o
Commentary of “Different types of not being able to do something”.
It is interesting a perspective on Damian Milton’s talk.
Initial note, Thompson is clearly passionate about the subject of DAP and seems part of its vibrant community. This is a good thing.
However, I think there are number of points that need to be challenged in the video and its discussion.
There are issues with some of the language used by Thompson, such as “Atypical Autism” and “More Classical Autism”. The former is nonsense as typical autism does not exist and the latter is problematic as this will mean different things to individual persons.
Technically all researchers should be attempting to disprove DAP’s existence as that is how research is typically conducted as it part of the scientific method. One would note that such an approach generally seems to be lacking from DAP research as it appears to be conducted to prove DAP as an autism subtype (Woods 2018a).
Thompson is using their lived experience to explain the difference between autism/ DAP/ ADHD, this is problematic for numerous reasons. Primarily there it is recognised there is no stable hard boarder between those labels and no-one knows where each label starts or ends. Furthermore there is no trait that is specific to DAP and its traits often have many interpretations in different labels. This is an important factor to why DAP has at least 15 proposed medical ontologies (Woods 2018b).
Effectively, a DAP diagnosis does not mean much and can be easily challenged, with obvious implications for any diagnosticians clinical opinion. The only way to be sure of avoiding this doubt is to not diagnose DAP and use recognised labels from the diagnostic manuals, as argued by Green et al (2018a).
Particularly, it is concerning that Thompson appears to have internalised and anthropomorphised the main DAP discourse. As such not much can be taken from Thompson’s personal account due to the uncertain nature of what DAP and cannot be generalised to the wider DAPer population. It does raise a few questions, such as; what would Thompson’s and fellow DAPer’s response be if research shows that DAP is not a form of autism? Similarly, what if the American Psychiatric Association or World Health Organisation decide DAP is not a form of autism, or for example it is a form of attachment disorder as believed in 2012 (Milton 2017)?
It is viewed by many that claiming DAP is a form of autism and a profile within the autism spectrum is an extreme and unethical position to take. Significantly, as there is vigorous debate over what DAP actually is and for the foreseeable future there are clear ethical ramifications for favouring any proposed medical nature and nosology over another.
There is no single interpretation of what executive functioning is (Chown 2017), this reflects how there is no single interpretation of what DAP is. For example, see the competing profiles of Newson and Eaton.
Thompson seems to be misrepresenting monotropism theory. For one information of the wider world is present in monotropism cognition, yet a person will be unaware of that information if attention resource is not interacting with that information. Autistic persons are known for being eclectic, partly because their monotoropic disposition often “randomly” evolves over time, akin to a rhizome.
Thompson does recognise flow states can be found in DAP and ADHD. Presently, there is intense effort to develop monotropism theory, specifically with the work of Karl Friston. Such research is being done to explain autism and its myriad comorbidities. In short Thompson is not critiquing an accurate representation of monotropism theory; see Woods (2018b) for a more modern overview of it that explains DAP in its entirety.
It is common for autistic persons to be hyper vigilant and on edge. An example from Chown (2017) of an autistic adult living in terror from dogs barking in their surrounding neighbourhood.
If DAP is a form of autism, no-one will have DAP, it would instead be viewed as a different way being human. Claiming someone has DAP is akin to using to person first language (person with autism) and shares the same connotations that DAP is extrinsic to the individual & can be separated from the person. This contradicts frequent terminology within the neurodiversity movement of label first language (autistic person). Consequently, Thompson’s use of neurodiverse to describe DAPers can be viewed as appropriating neurodiversity for their own agenda and utilising fringe neurodiversity concepts.
Thompson seems to talk about different persons instead of the transactional nature of demand avoidance behaviour (Fidler and Christie 2019; Green et al 2018a; Milton 2017). In doing so Thompson fails to take into account how different situations & factors lead to persons not being able to do something. A list of possible explanations for such behaviour is found in Green et al (2018b). Moreover, Luke Beardon’s Autism + Environment = Outcome is also pertinent (2017).
Many common items or subjects that are familiar to autistic persons can be unsafe by autistic perspectives, as highlighted in the high rates of autistic school refusal.
It is accepted in the DAP discourse that DAPers benefit from routines, particularly if it is routines they choose (Dura- Vila and Levi 2019; Fidler and Christie 2019). This is no different to entire autistic population and autistic persons benefit being in charge of their lives (Woods 2018a). Autistic persons tend to be adversely affected when others impose a routine unto them, as reflected by negative effects of ABA.
To conclude while Thompson has produced an intriguing video, there is little to justify it being utilised as a resource.
I hope Thompson’s forthcoming book is of higher quality than this YouTube video.
Plans for future blog posts.
I have a few blog posts lined for the next coming months; such as further updates to the list the of published articles, in particular I have been informed to expect my article Pathological Demand Avoidance: Is it time to move beyond the pathological need to not to develop more inclusive pedagogical practices? Is shortly to be published in Autonomy, the Critical Journal of Interdisciplinary Autism Studies. I plan a future blog post exploring how parts of the DAP community are acting like cult.
Latest DAP Research.
I and others have a new article published Critical Autism Studies: a more Inclusive Interpretation, which can be viewed at the link below:
I have delivered 3 talks on Rational Demand Avoidance at recent Participatory Autism Research Collective events:
1) Rational Demand Avoidance: what it is not, what it could be & what it does.
2) Neurodiversity Movement and Rational Demand Avoidance: The clash of 2 competing biopower technologies in action.
3) An Interest Based Account (Monotropism theory) explanation of anxiety in Autism & a Demand Avoidance Phenomenon discussion.
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:
The third talk develops an interest based account of autism (monotropism theory) and highlights how it explains the DAP profile.
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
References.
Beardon, L. (2017). Autism and Asperger Syndrome in Adults. London: Sheldon Press.
Chown, N. (2016). Understanding and Evaluating Autism Theory. London: Jessica Kingsley Publishers.
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.
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.
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.
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.
Milton, D. (2018). Pathological Demand Avoidance (PDA) and alternative explanations: a critical overview (Conference Paper). Retrieved from: https://kar.kent.ac.uk/67064/1/PDA%20and%20alternative%20explanations.pdf (Accessed 07 November 2018).
Thompson, H. (2019). Different types of not being able to do something (Online video) Retrieved from: https://www.youtube.com/watch?v=YKA39DoA10o (Accessed 23 January 2019)
Woods, R. (2018a). 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 08 November 2018).
Woods, R. (2018b). An Interest Based Account (Monotropism theory) explanation of anxiety in Autism & a Demand Avoidance Phenomenon discussion. (Conference paper). Retrieved from: https://www.researchgate.net/publication/329001126_An_Interest_Based_Account_Monotropism_theory_explanation_of_anxiety_in_Autism_a_Demand_Avoidance_Phenomenon_discussion (Accessed 24 November 2018).
Rational Demand Avoidance 