PERSONAL REFLECTIONS ON WRITING ABOUT THE ETHICS OF DEMAND AVOIDANCE PHENOMENA.
I am currently in the process of completing revisions on a book chapter discussing the ethics of Demand Avoidance Phenomena (DAP, or commonly known as Pathological Demand Avoidance). As one can imagine this is in equal measures: complex, conflicting and deeply thought provoking. Consequently, I felt that I needed to add my personal thoughts to clarify my personal position on the topic (and the editor requesting that I express my views in the chapter). Unfortunately due to needing to comply with the word limit, I excluded this from the essay. I will include a link to this blog post in the published chapter (assuming it is published).
After my reflections I include links to my latest research, the journal Autism Policy and Practice. Finally, a notice from Grace Trundle, seeking participants for her DAP research.
Personal Reflections on DAP ethics.
DAP ethics is a topic I have spent many hours, even weeks reflecting upon over the last 2 years. I have written about this in various essays (some are not in the public domain) and spoken about it many conference talks. It is something that is genuinely a challenging topic due to the conflicting demands from various accepted conventions and divergent stakeholder wishes. It has been stressful to present an overview of DAP ethics in a several thousand word essay and there is a PhD in this topic.
I endeavour to practice what I preach, to have robust critical analysis, resulting in a cohesive and balanced outlook on a topic of interest. I especially try to do this on DAP. This is not only for my own professional and personal integrity, but also as a response to the numerous attacks on myself from the PDA community. I need to acknowledge that I myself have been proactive in challenging the status quo on DAP. This is crucial as the DAP discourse has taken a dichotomy of views present, with both sides essentially saying they are the correct version and the other side is largely talking nonsense. I am actively attempting to take a middle ground position, emphasising rigorous critical analysis and prioritising scientific integrity of research and clinical practice. I do admit I am being dogmatic on this, I do not see that as a bad thing considering the historic and ongoing poor quality autism research. I do not see why we should undermine the integrity of an autism diagnosis, while pretending that DAP has noticeable integrity or validity. Furthermore, having good quality DAP research helps everyone in informing Policy and Practice on this topic.
I am shocked the ethical case for DAP has not been previously established, so that when its evidence base is challenged, at least its supporters have an ethical position to fall back on. Unfortunately, this is simply not the case. We know that main DAP discourse and its supporting literature is to some extent coordinated by the PDA Development Group and part of its literature produced by its members frequently argues against debating DAP. I suspect ethical considerations around DAP have been neglected to avoid scrutiny over their position. This would be in line with generally not referencing divergent literature or the PDA Society not sharing my work (PDA Society would say some of my work has not been peer reviewed or is supportive of their position. This is a weak argument as much of my work is being widely cited outside of main SAP discourse supporting literature.). I do acknowledge I maybe rather cynical here, yet, I do accept that DAP supporters mean well. Same that, on some aspects of DAP I am conflicted myself over the appropriate position and response.
Once you start discussing DAP’s ethics, everything about how the construct is operating and constructed is critically evaluated. At that point you are naturally debating the merits of DAP, the flaws in main DAP discourse quickly become apparent. I have sent copies of my previous ethics essay to the PDA Society and members of the PDA Development Group and this was ignored. Likewise the citation survey results. My work is being cited widely outside of main DAP discourse and I spoke at a Norwegian DAP conference in November 2019. I have authored several essays of note on DAP and taught about the topic at postgraduate level. Yet, I am not being invited to talk at events held by the UK DAP supporters. Which begs the question, why not?
I think if one looks at if there is a clinical need for DAP, for its strategies should inform the fundamental decisions on the construct. The answer to that is apparently there is no need for DAP as its strategies are already widely practiced. I think ethically, we should ignore DAP and focus on meeting the wishes of autistic persons; providing better support and services. Research into DAP strategies for autistic persons would be inline our wishes. Some would argue I am closed to DAP being part of the autism spectrum. I would argue I am clearly unimpressed with a lot of what is said about DAP and for many good reasons. I am open to DAP being a form of autism, but it needs sufficient evidence to warrant that; that threshold is supporting evidence that is greater in both quality and quantity than Asperger’s Syndrome.
I apologise if this feels like a rant, DAP ethics has been something that has consumed me greatly in recent times. Regardless, of my critique, I accept that DAPers and their carers are both vulnerable persons, requiring appropriate support. I think there are other ways of achieving support for these groups than utilising the DAP construct (which can be found in my work), and there are more pressing issues facing the United Kingdom autism community.
My latest research.
I have recently had a commentary article published in Good Autism Practice:
- Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference.
Additionally, I and others have had a short essay published in Journal of Autism and Developmental Disorders:
- Empathy and a Personalised Approach in Autism.
I have added conference papers from my recent talks to my researchgate, which can be accessed via the link below:
I have other works submitted or in press, so watch this space.
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:
Grace Trundle’s DAP research.
As part of a postgraduate course at the University of Nottingham, a research study into social skills is being conducted! The purpose of the study is to investigate social processes in risky behaviour.
The results of the study will help clinical researchers better understand social and personal skills associated with offending and victimisation.
The study involves several questionnaires looking at behaviour, experiences, and characteristics, which will take around 30 minutes to complete. If you would like to take part in the study, you will be provided with all the study information and asked to sign a consent form allowing the researchers to access and use your anonymous data. Taking part in the study is voluntary, and you can change your mind at any point during the study. No personal information will be collected. Your responses to the questionnaires will be anonymous and only the researcher and supervisor will have access to the data provided.
If you are interested in taking part in the study, please click the link: tinyurl.com/gtstudy19
If you have any questions, please contact any of the following:
Grace Trundle (firstname.lastname@example.org)
Dr Vincent Egan (Vincent.egan@nottingham)