DEMAND-AVOIDANCE PHENOMENA: IS “DAP PROFILE OF ASD” ACCURATE AND/ OR HIGHLY BIASED INFORMATION?
Introduction.
This is a short blog post discussing if information on an outlook for Demand-Avoidance Phenomena (DAP, sometimes called “Pathological Demand Avoidance”), which views it as a “Profile of ASD”. Over last few days I am wondering if I am potentially being too harsh towards “DAP Profile of ASD” outlook Specifically, how is it reasonable to assume “DAP Profile of ASD” (and equivalent outlooks of if DAP is an autism subgroup/ subtype) are the only valid outlooks/ hypotheses on DAP. Or, more pertinently, how is it scientific to assume “DAP Profile of ASD” (and equivalent outlooks of if DAP is an autism subgroup/ subtype) are the only valid outlooks/ hypotheses on DAP?
I have been having discussions online about the topic. I am adding to a response of mine to a “DAP Profile of ASD” supporter, to ask if information on that outlook is accurate, and/ or highly biased?
This is a quick blog post, and so it is minimally referenced, but I can provide references if needed. I am intending to produce a two to three other blog posts in coming weeks due to “PDA Day”. I need to upload pdfs of my recent twitter reflections and to also update list of published DAO literature.
There are ongoing-historical debates on DAP.
DAP is controversial and highly contested and has been so since at least 2002. If you would like to see introductions to DAP’s ongoing-historical debates, I recommend this short essay of mine:
Or this short 20-minute video:
I tend to think favouring “DAP Profile of ASD” is unscientific.
“Researchers are required to be open minded, to avoid research “designed to support a preconceived notion or belief” (Chown et al, 2019, p1). Ethically, researchers need to attempt falsification of their hypothesis as part of the scientific method that is involved in most research (Milton, 2016; Rutter and Pickles, 2016). Therefore, it appears that the main DAP discourse is self validating pseudoscience.”
Woods, 2019, p36.
My views have changed on this topic. I am open to revising this outlook.
Is “DAP Profile of ASD” outlook information accurate and/ or highly biased?
Below is text from a response I wrote on social media to a “DAP Profile of ASD” advocate. The text has been revised to anonymise it.
Not everyone considers PDA Society a reputable or accurate information source. I know that from own observations of their materials and talking to some other professionals. They certainly seem to cherry pick which information they choose to provide. For instance, they ignore how Goodson (2018) found that much DAP demand avoidance is caused by executive functioning issues, to claim in their highly biased research report which seems to pretend to be clinical guidance, that DAP’s demand avoidance is not caused by executive functioning issues (PDA Society, 2022).
Just because a person does may superficially not conform to certain predetermined outlooks on DAP does not mean they do not have DAP. An alternative interpretation is that perspectives such as provided in posts I am responding, is that the information is highly biased. Simply assuming DAP is part of the autism spectrum is noted to reduce the quality of DAP research due to the risk of bias it presents (Kildahl et al, 2021).
Utilising a different perspective. There is a male bias in autism research and diagnoses due to tools and diagnostic criteria being developed on mainly male populations. “Profound Autism” which is another proposed autism subgroup, centering on high support needs and co-occurring intellectual disability and/ or learning impairment. Caregivers of autistic persons attributed with “Profound Autism” argue that those diagnosed with Asperger’s Syndrome, like me are not disabled. Why are “Profound Autism” caregivers arguing this? Potentially, because of biased interactions with a particular group of autistic persons. Why are some erroneously claiming I do not have DAP? I would suggest it is because similar biased processes which seem to be occurring to construct “DAP Profile of ASD”.
Considering the following processes seen to be occurring with “DAP Profile of ASD”:
- Only diagnosing DAP in suspected autistic persons.
- Claiming that autism has expanded to include DAP, when many disagree with that outlook.
- Assuming DAP features = autism features, while ignoring DAP literature acknowledging it is difficult to fit DAP into autism due to features: anxiety, comfortable in roleplay in pretend, various criminal behaviours, “manipulative”- “strategic” social avoidance features, DAP’s supposed social communication issues are not due to Theory of Mind issues, but instead issues with understanding social identity, pride, shame, rapid mood changes and impulsivity are seen ADHD etc.
- Changing DAP’s clinical descriptions to reflect autism like understandings.
- Ignoring UK’s Equality Act which defines a person as being disabled when:
“What ‘substantial’ and ‘long-term’ mean
‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed
‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection” (UK Government, 2010)
Which means a person is disabled by their demand avoidance irrespective of if they are autistic or not. So non-autistic persons with DAP have same rights to DAP diagnoses, research, and support.
- Ignoring topic expert views and how DAP is diagnosed at lower diagnostic thresholds, and in non-autistic persons, indicating there is a clinical need for DAP at lower diagnostic thresholds and in non-autistic persons.
- Ignoring how Newson was an autism expert and was aware of Triad of Impairment in the early 1980s, if Newson wanted DAP to be part of the autism spectrum, she would have modelled DAP on the Triad of Impairment, consistently said DAP was part of the autism spectrum, not excluded cases which presented autism features from her research etc. Newson did the EXACT opposite of that.
- Ignoring how most autistic persons do not want autism divided into subgroups.
- Assuming that outlooks with are different to “DAP Profile of ASD” are mistaken.
It seems inherently reasonable to me view “DAP Profile of ASD” as a highly biased outlook on DAP, as it is constructed due to highly circular processes, akin to how the male bias in autism research and diagnoses are constructed. Which takes me back to, how is it reasonable to assume that “DAP Profile of ASD” is the only valid outlook on DAP?
Perhaps, this might be an easier question to answer: Why it is reasonable to assume that different outlooks on DAP are mistaken because they do not conform to “DAP Profile of ASD” advocates expectations on DAP?
There are other factors which I consider making it problematic to reasonably view “DAP Profile of ASD” as the only valid outlook/ hypothesis on DAP. The list presented above was the ones off the top of my head at time of writing that social media comment. I hope this blog post encourages people to critically reflect upon the nature of information being provided on “DAP Profile of ASD”, and to consider the apparent circular processes which construct that information.
References.
Goodson, A. (2018). Emotion Regulation and Executive Function in Children and Adolescents with Autism Spectrum Disorder and Pathological Demand Avoidance Traits. Doctorate of Clinical Psychology, University College London
Kildahl, A., Helverschou, S., Rysstad, A., Wigaard, E., Hellerud, J., Ludvigsen, L., & Howlin, P. (2021). Pathological demand avoidance in children and adolescents: A systematic review. Autism, 25(8), 2162 2176.
PDA Society. (2022). Identifying & Assessing a PDA profile – Practice Guidance (Online report). Retrieved from: https://www.pdasociety.org.uk/wp-content/uploads/2022/01/Identifying-Assessing-a-PDA-profile-Practice-Guidance.pdf (Accessed 14 February 2022).
United Kingdom Government. (2010). Definition of disability under the Equality Act 2010 (Government website). Retrieved from: https://www.gov.uk/definition-of-disability-under-equality-act-2010 (Accessed 22 April 2023).
Woods, R. (2019). Demand avoidance phenomena: circularity, integrity and validity – A commentary on the 2018 National Autistic Society PDA Conference. Good Autism Practice, 20, 28–40.
My latest research.
I have a short essay published in The Spectrum magazine:
- DAP: A Preventable Delicate Activity.
A new book chapter in the Critical Autism Studies Handbook published by Routledge, due to be released in December 2022:
- Rational (Pathological) Demand Avoidance: As a mental disorder and an evolving social construct.
I am co-researcher in a study to initially validate a self-report questionnaire to investigate An Interest Based Account of Autism, otherwise known as Monotropism Theory in autistic persons:
- Development and Validation of a Novel Self-Report Measure of Monotropism in Autism.
Latest conference paper discussion how DAP is socially constructed as a “Profile of ASD”:
- Demand-Avoidance Phenomena (“Pathological”/ “Extreme” Demand Avoidance): As a Social Construct.
I delivered a short talk on autism & mental health in March 2022:
- Autism & mental health.
Frontiers in Education “Pathological Demand-Avoidance” Special Issue Call For Papers.
I, Professor Eddie Chaplin, and Dr Allison Moore have a special issue on DAP in the journal, Frontiers in Education. Presently, we have a call for papers running until 30th of June 2023. If you would like more information, please see the link below:
Rational Demand Avoidance 