WHAT IS CREDIBLE ABOUT DEMAND AVOIDANCE PHENOMENA (DAP)?
Edit. There maybe things that I think are credible that I forgot to include. An example would, I think it is credible DAPers are conditioned into parts of the profile. The list should be viewed as work in progress.
People are probably aware, I am skeptical of most of things said about Demand Avoidance Phenomena (DAP, commonly known as Pathological Demand Avoidance). More recently, I have started to keep a list of things I consider to be credible about the main discourse. This list is an expanded version from my most recent conference talk available below:
What do I think is credible about DAP?
There are 9 points that have merit in the main DAP discourse.
- Benefit some person’s in terms of understanding.
- Bringing together some autistic persons.
- DAP diagnosing private clinics are providing a valuable service, plugging in gaps in support from the public sector.
- DAPers do require appropriate strategies.
- DAP supporters do mean well.
- Lived experience.
- Some individuals do meet the DAP profile.
- Strong strategies.
- Supportive Community.
For reference the main DAP discourse is that DAP is an autism subtype, that is part of the autism spectrum. This is sometimes phrased as a profile/ constellation/ cluster of traits/ syndrome/ disorder of autism; medically speaking this all means the same thing, that DAP is still viewed as a distinct syndrome as part of the autism spectrum. DAP is known as either Pathological Demand Avoidance or Extreme Demand Avoidance. DAP has a specific strategies that are different from other conditions. I will next go onto detail what I mean by each point.
Benefit some person’s in terms of understanding.
It was upon reading Harry Thompson’s book that it clicked for me, just how important DAP is to some persons, to their sense of being. Some individuals feel that DAP provides a better explanation of their issues than other diagnostic categories. I suspect this is partly linked to the “Lightbulb Moment”, which is a strong recognition factor persons often have when first encountering information about DAP.
Bringing together some autistic persons.
This is linked to the previous point. As some persons are identifying with DAP, there is a growing community of those diagnosed and undiagnosed with DAP. Due to circular practice of mainly diagnosing DAP in autistic persons (for example the ASD + DAP traits diagnosis is quite common), DAP is bringing together a minority of autistic persons together into a community. Due to how autistic persons tend to get on well with each other better than with non-autistics, this can be viewed as a good thing. It can also be viewed as negative due to the polarising nature of the main DAP discourse.
DAP diagnosing private clinics are providing a valuable service, plugging in gaps in support from the public sector.
DAP is diagnosed by a small number of private clinics that identify many DAPers (It can also be diagnosed on the NHS). While I do think these clinics are contributing to the commodification of autism (Woods, 2017). I do accept that due cuts in support for SEND persons, in Local Authorities, NHS Trusts and School budgets; these clinics are enabling some vulnerable persons to acquire support that they urgently need. This is more because the DAP strategies are strong approaches (and this will discussed later), than other factors. For discussion on this, please see Woods (forthcoming)
DAPers do require appropriate strategies.
From, (1) Engaging with the lived experiences of DAPers and listening to carers. (2) The statistics around the construct are clear, those often identified with DAP do need support. For instance see Russell (2018). (3) My work with what many regard as the strongest autism theory, Monotropism Theory, also indicates that DAPers require suitable strategies to minimise the mismatch between the autistic DAPers needs and their environment. (Woods, 2019). I should note I think some DAPers are non-autistic; that is another debate. From the 3 reasons provided, I think there is a merit to the position that DAPers do need appropriate approaches. There is debate to what exactly those approaches are, for more details see (Green et al, 2018a; 2018b; Woods, forthcoming).
DAP supporters do mean well.
We are dealing with a group of SEND persons who frequently present behaviours of concern (challenging behaviour) for those around them. So these behaviours tend to create significant psychological pressures on individuals around the DAPer. With the myriad of knock on effects of these behaviours, such as home schooling or carer’s leaving work to look after their child (Russell, 2018). Most people who support the main DAP discourse, do mean well and are trying to support some vulnerable persons who can be in extremely challenging situations for all those involved.
Autistics persons often get gaslighted by others, for example see Yergeau (2013). I have been gaslighted by those who I needed support from and this at the time made my mental health worse. I do not want to gaslight other persons, who I have established are frequently in vulnerable positions themselves. I think we need to accept the lived experience of DAPers and their carers’, recognising that their lived experience is a credible information source.
Some individuals do meet the DAP profile.
After meeting DAPers in person and often communicating with Harry Thompson. I do now accept there are individuals who meet the DAP profile. The issues here is that there is no agreement on the DAP profile is (Woods 2019). That the DAP profile is not inherently proof of its existence as a syndrome etc. (Woods, forthcoming). DAP can be explained by the interaction between autism and various co-occurring conditions (Green et al, 2018a; 2018b; Woods, forthcoming), and that ethical implications.
This is something that I do not think is appreciated by the DAP community. The DAP strategies are strong approaches to working with most/ all other individuals. From what I can tell from my limited reading (compared those more knowledgeable and experienced than me), the DAP strategies overlap many strategies commonly used in psychopathology. The DAP strategies overlap many approaches used inside and outside of autism (Green et al 2018b; Woods, 2019), and can be viewed as replicating generic good practice (Woods, forthcoming).
The DAP supporting community, are highly supportive of each other, with many persons passionate about the construct. To recognise this, one only has to look at the thousands of persons signing and petitions to get DAP recognised or the approximately 1500 responses to PDA Society’s being misunderstood report (Russell, 2018). This supportive nature can be a disadvantage in some ways, for my discussion about that sees Woods (forthcoming). However, due to the vulnerable circumstances many DAPers and their cares themselves in, having a supportive environment readily available can make a massive difference to the quality of lives of those in the DAP community.
What I am not saying is credible.
It is important to note the specifics of what I am saying. I am still skeptical of much about DAP, nor I am convinced of the fundamental arguments put forward to justify DAP. There is certainly not enough evidence to say DAP is a form or autism (it specifically needs more evidence than Asperger’s Syndrome, in both quality and quantity) and there is ongoing debate around the clinical need for construct; for instance see Green et al (2018a; 2018b); Woods (2019; forthcoming). There is a need for an ethical debate to establish that DAP should even be researched, as it is circular to claim DAPers are entitled to research because it is diagnosed. DAP is not a research priority of the autistic population (Woods, 2017).
Also some of the points I think are credible are simultaneously problematic for others. For instance, while its’ community is supportive of each other, it is frequently hostile to those it disapproves of. For instance, Vincent Egan was attacked for doing his research into DAP and personality disorders. I and Damian Milton have also suffered the attention of the DAP community, have received the following:
- I and Damian Milton have received complaints against us.
- Conspiracy theories, apparently, I have NPD.
- Defamatory petition to have Damian Milton fired from NAS.
- Instances of attacking those who disagree with main discourse.
- Name calling, “Miltonsplaining”.
- Secret documents responding to critique.
- Surveillance of those with divergent opinion.
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.
Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., & Baird, G. (2018). 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: 21.
Russell, S. (2018). Being Misunderstood: Experiences of the Pathological Demand Avoidance of ASD (Online report). Retrieved from: https://www.pdasociety.org.uk/resources/research-summary (Accessed 20 October 2019).
Woods, R. (2017). Pathological demand avoidance: my thoughts on looping effects and commodification of autism. Disability & Society, 34: 753-758.
Woods, R. (2019). An Updated Interest Based Account (Monotropism theory) & a Demand Avoidance Phenomenon discussion (Conference paper). Retrieved from: https://www.researchgate.net/publication/332727790_An_Updated_Interest_Based_Account_Monotropism_theory_a_Demand_Avoidance_Phenomenon_discussion (Accessed 20 October 2019).
Woods, R. (Forthcoming). Demand Avoidance Phenomena: Circularity, integrity and validity: a commentary on the 2018 National Autistic Society PDA Conference. In Press.
Yergeau, M. (2013). Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind. Disability Studies Quarterly, 33(4). https://dsq-sds.org/article/view/3876/3405