RATIONAL (PATHOLOGICAL) DEMAND AVOIDANCE: AN ETHICAL CHALLENGE TO ITS ORTHODOXY.

RATIONAL (PATHOLOGICAL) DEMAND AVOIDANCE: AN ETHICAL CHALLENGE TO ITS ORTHODOXY.

 

Introduction.

This is a short essay I wrote in late 2018 on the ethics of Rational Demand Avoidance (RDA). I submitted this into the journal Autism and it has been peer reviewed. It was rejected due to the quality of the writing, the reviewers did not challenge the views expressed in the piece. The essay itself has been extensively researched and contextualised in wider debates. The arguments made should still be applicable to this day. The essay has been privately shared with various parties, including many PDA supporters. I have added URLs to the references where possible for ease of access. For an overview of the essay, please see it’s abstract below.

 

Other planned blog posts include a rebuttal to a particular blog by Robert Chapman. I might even finish the blog post on how PDA Community is acting like a cult, which would be interesting to complete!

 

I also include links to recent research and a call for participants in some PDA research being conducted at University of Nottingham.

 

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

 

Abstract.

This essay explores the ethics of Rational Demand Avoidance (RDA) and the inclusion of autistic persons in its central discourse. Primarily supported by non-autistic stakeholders, there has been negligible consideration of autistic viewpoints. By synthesising RDA and autistic authorship, specifically critique of behaviourist interventions (Milton 2017a). We critically evaluate the benefits of the main RDA discourse, emphasising autistic critique is applicable. Thus, there are many unethical characteristics found within the dominant RDA discourse and its exponents. Requiring greater transparency & utilisation of patient and service user engagement framework (Shippee et al 2015); therefore, providing autistic persons with citizen power.

 

The Rational Demand Avoidance Debate.

Rational Demand Avoidance (RDA) is a proposed pervasive developmental disorder (Newson et al 2003), supported for its educational strategies (Newson et al 2003; Christie et al 2012; O’Nions et al 2016). Since its inception RDAs ontology has been contested, at present these entail: autism; an interaction between autism and its comorbidities; with RDA’s behaviour profile overlapping many common autism comorbidities (Green et al 2018a); forms of attachment disorder (Flackhill et al 2017); personality disorder, female autism (Christie 2007), autistic trauma (Milton 2017a); catatonia (Milton 2018); and a heterogeneous spectrum condition similar to autism (Kaushik 2015). For its behaviour profile and diagnostic tools, see Newson et al (2003), Green et al (2018a), O’Nions et al (2014; 2016). RDA’s diagnostic criteria are in a state of flux (Eaton 2018).

 

There are doubts if those being identified with RDA are representing the same condition, partly fuelled by larger numbers of RDAers (those identified with RDA) being diagnosed than initially observed (Green et al 2018a); as RDA diagnoses as a proxy for achieving different support packages and is an atypical nosology approach (Green et al 2018b) . Utilising this logic to nosology, RDA is likewise a subtype of catatonia due to overlap of their respective strategies, see Eaton (2018). Furthermore, RDAers are seeking amendments to its criteria to reflect their lived experience. These ontology debates have lacked autistic viewpoint, which will be developed next.

 

Autistic academics have been critiquing RDA, as a cultural construct. For instance, RDA as the commodification of autism (Woods 2017). Milton (2017a) queries if stakeholders are misperceiving RDA as being pathological in nature, when the actions are inherently rational to the autistic person. Woods built on this critique to provide a fresh deconstruction (2018a, blog). Recently autistic persons have generated wider critique at Participatory Autism Research Collective (PARC) events (Milton 2018; Sanchez; Woods 2018b; 2018c), ranging from alternative explanations  to noting RDA traits can be found in Asperger’s original case studies. While aforesaid critique is welcome, key ethical debates and autistic representation are presently missing from the RDA literature.

 

Much of the RDA discussion centres on its name, 3 names significantly promoted. The demand avoidance is deemed pathological due to perceived severe effect it has on a person’s life (Newson et al 2003). Currently, its proponents suggest Extreme Demand Avoidance is an acceptable and appropriate term that is not derogatory (Eaton 2018; Reilly et al 2014), and to counter those who doubt RDAer distress (challenging) behaviour is pathological (Gillberg 2014). Autistic academics counter that our demand avoidance is rational in nature, with it being perceived pathological by observers (Milton 2017a; Woods forthcoming); like when RDAers refuse to follow certain boundaries, but do not do anything illegal (Cat 2018). Participatory research is increasingly on the agenda in the UK as part of this adopting autistic preferred language, and recognising PARC is a leading autistic neurodiversity aligned organisation (Fletcher-Watson et al 2018).  The merits of RDA as preferred terminology are high, considering RDA supporters calls for more admissible terminology.

 

RDA being viewed as a form of autism, but not autism, is the prevailing views advocated by its supporters (Christie et al 2012; Eaton 2018; Russell 2018), reflected in ongoing online petitions, surveys and social media blogs that circulate its community, Cat (2018) is illustrative of this. Aforementioned view is shared by the PDA Society, with the implied assumption RDA will later enter into the main diagnostic manuals (Russell 2018). Russell (2018) is an example of PDA Society advocacy for RDA, raising its awareness (Green et al 2018a). The charity updates the PDA Development Group which partly co-ordinates RDA research, following its agenda of RDA entering the diagnostic manuals (Christie et al 2012). The PDA Society evolved from a parent support group and is primarily run by RDAer parents (PDA Society 2019). Pertinently, it is for the clinical bodies that author the main diagnostic manuals to decide what autism is. Contrarily, it is for autistic persons and their representative groups, such as PARC (Fletcher-Watson et al 2018).

 

Majority of RDA literature focuses on this goal, like solitarily investigating in suspected entire autistic samples (Gillberg et al 2015; O’Nions et al 2016; Reilly 2014). This contradicts how most research is undertaken, not to facilitate a certain vision (Milton 2016), and equivalent practice is unethical (Dawson 2004). RDA is viewed as superfluous (Green et al 2018b; Woods 2018a, blog). There is insufficient evidence to maintain RDA proponents’ stance on RDA, that it is a subtype of autism (Green et al 2018a). Subsequently, it can be viewed that RDA advocates are taking an extreme and dogmatic position in relation to the contemporary RDA literature and medical ontologies.

 

This article has integrated influential components of the RDA discourse, simultaneously critically evaluating from autistic perspectives for us to be fully represented.  The synthesis highlights the conflicted nature of RDA akin to autism RDA (Woods et al 2018); is not a thing, but a debate about a thing. Compellingly, the RDA literature notes it is being driven by parents & clinicians (Christie et al 2012; Green et al 2018a; Newson et al 2003); not autistic persons. Therefore, this article will now situate RDA in participatory research and ethics debates.

 

The ethics of Rational Demand Avoidance.

The ethics of RDA are intertwined with inclusive research; firstly, the level of autistic participation needs to be discussed. Interest in RDA is driven by non-autistic stakeholders (Christie et al 2012; Newson et al 2003; Sanchez 2018), neither are they represented on the PDA Development Group and this is problematic as it coordinates most of its research. The National Autistic Society surveys its members to enquire if it should support RDA. The flaws are that National Autistic Society’s information on RDA displays the central RDA discourse. Significantly, the results of these polls are plausible biased in favour of a positive result as its community is effective at mobilising itself; for example see Department for Health and Social Care (2018) & Russell (2018). RDA’s defining feature, is the demand behaviour from a need for control (Newson et al 2003), however these actions are an interactive process (Green et al 2018a; Milton 2017a). Similarly, RDA could be pathologising autistic self-agency (Milton 2017a). Thusly, at present autistic persons only occupy Nonparticipation on Ladder of Citizen Participation (Arnstein 1969), running conversely to the growing United Kingdom participatory research environment (Fletcher-Watson et al 2018).Inclusive practice that should address these shortcomings would be to involve autistic persons through PARC in all stages of RDA research, particularly as expressed by Shippee et al (2015).

 

For RDA literature to be inclusive, it needs to encompass the RDAers themselves & its embryonic community. Specifically, their lived experience should be acknowledged. Nonetheless their wishes of the RDA construct must be accepted and is part of the autism spectrum is an extreme position, that is detached from the evidence base and RDA & its opposing outlooks (Flackhill et al 2017; Green et al 2018a; Milton 2017a). Importantly, the RDAers may not be autistic. If future research backs RDA as an autism subtype, it is feasibly to be unacknowledged in the diagnostic manuals due to problems diagnosing its subtypes. RDAers view that their anxiety is intrinsically caused (Green et al 2018a), and is genetic in nature (Harvey 2012). Hence it requires biomarker research to substantiate it and at least encourages research that maybe adapted into cures. Chown and Leatherland call for a moratorium on such research (2018), enveloping behaviourist RDA research. The desires of potential autistic persons needs to be weighed against the views of autistic persons, therefore the article explores this next.

 

Social model interpretations of autism are on the rise (Chown and Leatherland 2018; Pellicano et al 2018; Woods et al 2018). The bias towards medical model views of RDA could be an attempt to undermine this growth, akin to how medical community reattached themselves onto homosexual community after the outbreak of HIV during the 1980s (Richardson 2005). The attention for RDAer medical model perspectives; is only a narrow range of the opinions expressed by the autistic community and is not representative of their wishes. For related material see Pellicano et al (2014), Cusack & Sterry (2016). Indicatively, PARC has persistently critiqued Autistica’s contribution to Autism Innovative Medicine Studies-2-Trials, mirroring outrage by autistic persons on social media. RDA advocates preferred version of neurodiversity, Biological Citizenship is a medical model stance which is not shared by PARC. Vitally, RDA supporters citing neurodiversity are appropriating a movement for autistic (and others) emancipation for their own prerogative.

 

The main RDA discourse is a form of behaviourism and is lacking autistic critiques of such theory. For instance Positive Behaviour Support proliferates ableism (Milton 2017b), as behaviourist ideology requisites autistic persons to be compared to non-autistic norms and expectations; to be seen as less than human due to deficits (Dawson 2004), such language is found in the RDA literature, see Eaton (2018).  RDA is frequently compared against autism stereotypes (Sanchez 2018; Woods 2018c), which can be internalised as manifested by Sally Cat’s categorising her traits between autism and RDA (Cat 2018). Autistic persons are more likely to internalise difficulties (Eaton 2018); leading to self-stigma and combined with autistic suicide rates (Hirvikoski et al 2016), provides a powerful motive prohibiting the Autism + RDA traits diagnosis. Internalising the extreme RDA discourse driving internalised ableism between autistic persons (Woods 2018c); corresponding conflict is likely creating psycho-emotional disablism. Regardless, these concerns add to prior ethical and epistemic rationale for autistic inclusion (Milton 2017a).

 

Autistic critique of Applied Behaviour Analysis is applicable to RDA. The extreme locus of the RDA debate is enabled via the argument that debating RDA’s ontology is a distraction from diagnosing it (Christie 2007; Christie et al 2012).  Moreover, it is argued RDA is necessary to prevent harmful distress behaviour generalising (O’Nions et al 2018), suggesting persons’ could be conditioned into the RDA profile. Similar unethical arguments are found in the Applied Behaviour Analysis discourse to induce acceptance of the intervention (Dawson 2004; Milton 2017a). Arnstein (1969) advises transparency is fundamental to participatory research, meaning it is required from the PDA Development Group. With the expanding autistic rights movement, RDA can be used to control autistic persons as a diagnosis is required to access to strategies that contain: negotiating with autistic persons, by placing them in control and working with them through their special interests (Christie 2007). Crucially, autistic persons benefit from being in charge (Williams 2018; Wood 2018; Woods 2018a, blog). Accordingly, RDA can be perceived as a threat to autistic persons’ human rights (Woods 2018a, blog). This section has investigated the foremost ethical arguments around RDA, demonstrating the serious ethical challenges it faces.

 

How to include autistic perspectives?

The article provides a synthesis of RDA and autistic scholarship, critically challenging the main RDA discourse. Ergo the main RDA discourse is an extreme and unethical position, common of behaviourism (Dawson 2004; Milton 2017a; Williams 2018). Analysis of future RDA literature is essential for monitoring the inclusion of autistic perspectives. Incorporating transparency into RDA research will allow for autistic persons to gain citizen power (Arnstein 1969), through framework suggested by Shippee and colleagues (2015) and embracing autistic outlooks. Thereupon, permitting the RDA literature to be first medical autism authorship to treat autistic persons as equals to clinicians and parents.

 

My latest research.

My most recent conference paper is:

–           Is the concept of Demand Avoidance Phenomena (Pathological Demand Avoidance) real or mythical?

https://www.researchgate.net/publication/340279248_Is_the_concept_of_Demand_Avoidance_Phenomena_Pathological_Demand_Avoidance_real_or_mythical

 

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 DAP Conference.

https://www.researchgate.net/publication/337146735_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.

https://doi.org/10.1007/s10803-019-04287-4

A book chapter describing what the sub-discipline Critical Autism Studies is, I lead authored it and it can be found here:

https://link.springer.com/referenceworkentry/10.1007%2F978-1-4614-6435-8_102297-1

 

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:

https://www.openaccessautism.org/index.php/app/issue/view/4

 

PDA Research Call for Participants.

Sian Brown, is doing a study on externalising and internalising experiences in persons who describe behaviours associated with PDA. If you are interested in taking part, please complete the form below:

https://nottingham.onlinesurveys.ac.uk/dissertation-project-3

 

References.

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Christie, P. (2007). The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice. Good Autism Practice, 8: 3-11. https://www.ingentaconnect.com/contentone/bild/gap/2007/00000008/00000001/art00002

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Woods, R. (2018a). Critical Reflections on the Pathological Demand Avoidance debate: A response to The Practice MK blog and discussion (Blog post). 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 29 January 2019).

Woods, R. (2018b).Rational (Pathological) Demand Avoidance: what it is not, what it could be & what it does (Conference paper). Retrieved from: https://www.researchgate.net/publication/325181432_Demand_Avoidance_what_it_is_not_what_it_could_be_what_it_does (Accessed 29 January 2019).

Woods, R. (2018c). Neurodiversity Movement and Rational Demand Avoidance: The clash of 2 competing biopower technologies in action (Conference paper). Retrieved from: https://www.researchgate.net/publication/326492264_Neurodiversity_Movement_and_Rational_Demand_Avoidance_The_clash_of_2_competing_biopower_technologies_in_action (Accessed 29 January 2019).

Woods, R. (Forthcoming). 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. http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/CO3/html

Woods, R., Milton, D., Arnold, L., & Graby, G. (2018). Redefining Critical Autism Studies: a more inclusive interpretation. Disability & Society, 33: 974-979. https://www.tandfonline.com/doi/full/10.1080/09687599.2018.1454380

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