Demand Avoidance Phenomena (DAP) is a neutral term for Pathological Demand Avoidance, which is sometimes conceptualised as an autism subtype. There is much ongoing controversy around the construct. In this commentary, I attempt to contextualise the recent article, Intolerance of Uncertainty and anxiety (Stuart et al., 2019) within wider discourses. This discussion provides tentative support for monotropism autism theory and the growing body of research indicating that DAP may not be developmentally persistent (a high rate of persons not meeting clinical threshold into adulthood).Commentary: Demand Avoidance Phenomena, a manifold issue? Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents – a commentary on Stuart et al. (2020) – Woods – 2020 – Child and Adolescent Mental Health – Wiley Online Library
(PDF) Rational (Pathological) Demand Avoidance: what it is not, what it could be & what it does.
- The core trait is high anxiety levels.
- The demand avoidance behaviour is how a RDAer attempts to regulate and adapt to the high anxiety.
- The high anxiety levels and demand avoidance behaviours can be seen as an interactive process, with being labelled “demand avoidance behaviour” as disablism due to the RDAer vulnerability to internalising (Eaton 2018b; Trundle et al 2017).
- Other RDA traits can viewed as a different way of being, therefore they are not necessarily a defect.
So let’s talk about the concept of Pathological Demand Avoidance (PDA), though I prefer Tomlin Wilding’s interpretation: Pervasive Drive for Autonomy. I prefer this name because it is less judgmental, but also because it focuses less on demand avoidance (which can be caused by an endless number of things) and more on the core issue: the drive for autonomy. PDA is not a formal diagnosis in the DSM-5 or ICD-10, and it is not well known in the U.S., though it is widely acknowledged in the U.K.
The core of PDA is an anxiety-driven need for autonomy. PDA causes someone to avoid demands and expectations for the sole purpose of remaining in control. When faced with a demand (even a really minor one), PDAers can have extreme reactions.PDA: Not what you think it is!
This paper concludes by arguing that the label of PDA represents the medicalising and pathologising of behaviours that from an outsider perspective seem to be differentiated from what is deemed capable by autistic people, but could be seen as the behaviours of an autistic person who has gained a modicum of normative social skills and is simply asserting their agency. By pathologising such behaviour, one could unduly be blunting attempts at autistic self-advocacy.
The labelling of the expressions of autistic agency as pathological is in itself disempowering.
The PDA narrative presents what is perfectly rational behaviour from the viewpoint of the autistic person displaying it when faced with highly stressful situations, as not as a consequence of ‘choice’ (whatever that may be) but as a pathological response. It is deemed pathological due the distaste of those doing the perceiving and their idealisation of cultural and psychological norms.
The PDA narrative suggests that those who gain some social interaction skills and assert their needs through avoidance of imposed demands are pathological. In essence, such protests are perceived as the fault of pathology inherent in the individual mind rather than a conflicting interaction (much like ‘theory of mind’). It will no doubt lead to treatments that try and stop such behaviours (which could
be read as a form of self-advocacy and the gaining of skills). Such behaviours arise from any number of transactions between the individual and environment. The avoidance of demands is interactional in nature, and much like a lack of social reciprocity cannot be located solely in the mind of any one individual (Milton, 2012a).
The label of PDA represents the medicalising and pathologising of behaviours that from an outsider perspective seem to be differentiated from what is deemed capable by autistic people, but could be seen as the behaviours of an autistic person who has gained a modicum of normative social skills and is simply asserting their agency. By pathogising such behaviour, one could unduly be blunting attempts at autistic self-advocacy. Part of this misperception is due to the application of a deficit model of autism that considers autistic people as incapable of displaying social agency. As with other labels in the psychologisation of human social life, it is a descriptive construction from a medicalised pathologising functionalist discourse, yet even less than other labels it does not signpost practitioners to the needs of the person, but to the needs of those around them. One could even‘Natures answer to over-conformity’: deconstructing Pathological Demand Avoidance – Kent Academic Repository
argue that there is a struggle for power embedded in the discourse, in which one could question who it is who needs to control whom, an incidence of biopower in action.
With the need for kinds to be categorised and researched, PDA is diverting resources away from the limited UK research into autism. At the same time, PDA is not helping to fulfil wishes of people on the autism spectrum (Pellicano, Dinsmore, and Charman 2014). PDA is a spurious diagnosis for females (Hughes 2015), and is actively creating barriers to joining the autism human kind. New people will self-classify on the autism human kind, identifying with PDA. These individuals’ memories will change to align with the descriptions of PDA. They will now adapt their behaviours, acts and temperament to reflect those expected of PDA. This forms new meanings of the autism human kind (Hacking 1995; Hassall 2016).
PDA as a category attributes actions, behaviour and temperament onto the individual and away from the organisations and how organisations treat such individuals. It switches moral emphasis away from organisations listening to people on the autism spectrum and places the issue back onto people on the autism spectrum. These all contribute to control the evolution of the autism human kind along the predominant medical paradigm, fragmenting the autism human kind into novel categories (Hacking 1995). The autism industry would have successfully divided the autism human kind to form a new PDA human kind.
By reinforcing the deficit model of autism, PDA allows predominant neurotype society to ignore the voice of people of the autism human kind (Mallett and Runswick-Cole 2012), disregarding the growing view that autism is difference not a deficit. This looping effect encourages the commodification of autism, while entrenching vested interests of the autism industry. The National Autistic Society, for instance, receives a significant income from PDA-related activities. The fees for National Autistic Society’s annual PDA conference ranges from £90 to £474.The online licence for the Diagnostic Interview for Social and Communication Disorders (DISCO) which is used to diagnose PDA costs £420 for the first year and £90 for each subsequent year. A DISCO Refresher Course run by National Autistic Society costs £222 per person. The National Autistic Society also argues social communication disorders are likely to be on (part of) the autism spectrum. The autism industry is using PDA to maintain the dominance of autism human kind over other impairment labels.Full article: Pathological demand avoidance: my thoughts on looping effects and commodification of autism
Recently, a newly created term ‘pathological demand avoidance’ (PDA) has been given the status of human kind by the autism industry, but its status is contested due to various reasons. Significantly the behaviours, acts or tempera- ment described by PDA are also better described by other human kinds, notably autism and opposition defiant disorder. Consider an individual classified by autism human kind, who after numerous years develops moderate social skills and is self- advocating while in the presence of an organisation. Because of the organisation not accepting the individual’s self-advocacy, the individual is labelled as having demand behaviours (Milton 2013). At least 70% of people who are categorised by autism human kind are also given the label of another human kind (Lai, Lombardo, and Baron-Cohen 2014). Indeed, the actions, behaviours and temper proposed by PDA are often better explained by other human kind, which explains why PDA is not included in the two main diagnostic manuals.
PDA status as human kind is contested. PDA is not recognised by the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, the ICD-10 Classification of Mental and Behavioural Disorders or legally by the UK government (American Pscyological Association 2013; World Health Organisation 1992; Department of Health 2015). However, the National Autistic Society (NAS) recognises PDA as a human kind, and has been holding an annual PDA conference in recent years. PDA is recognised by the National Autism Trust (AET), and the National Autistic Society earns an income from AET and line-manages AET’s director. The autism industry is using Education Health and Care Plans and the SENDIST (special needs) tribunals which legally arbitrate on Education Health and Care Plans to try and legitimise PDA.
PDA as a category attributes actions, behaviour and temperament onto the individual and away from the organisations and how organisations treat such individuals. It switches moral emphasis away from organisations listening to peo- ple on the autism spectrum and places the issue back onto people on the autism spectrum. These all contribute to control the evolution of the autism human kind along the predominant medical paradigm, fragmenting the autism human kind into novel categories (Hacking 1995). The autism industry would have successfully divided the autism human kind to form a new PDA human kind.
By reinforcing the deficit model of autism, PDA allows predominant neurotype society to ignore the voice of people of the autism human kind (Mallett and Runswick-Cole 2012), disregarding the growing view that autism is difference not a deficit. This looping effect encourages the commodification of autism, while entrenching vested interests of the autism industry. The National Autistic Society, for instance, receives a significant income from PDA-related activities. The fees for National Autistic Society’s annual PDA conference ranges from £90 to £474. The online licence for the Diagnostic Interview for Social and Communication Disorders (DISCO) which is used to diagnose PDA costs £420 for the first year and £90 for each subsequent year. A DISCO Refresher Course run by National Autistic Society costs £222 per person. The National Autistic Society also argues social communication disorders are likely to be on (part of) the autism spectrum. The autism industry is using PDA to maintain the dominance of autism human kind over other impairment labels.Full article: Pathological demand avoidance: my thoughts on looping effects and commodification of autism
The autistic theory of monotropism can be viewed as the strongest autism theory. It explains both the cognitive and sensory differences experienced by autistic persons (Chown, 2017; Murray, Lesser & Lawson, 2005). Monotropism, views autistic experiences as based around interest creating “attention tunnels” where the amount of processing resource or attention each person can utilise at any moment is a limited resource. How each person experiences attention varies forming a continuum, with polytropism at one extreme and monotropism at the other. Monotropism is a single, hyper focused attention tunnel compared to polytropism when an individual has multiple simultaneous slightly aroused or primed interests, with a low level processing flow constantly connecting them. During a monotropic state, perception is hyper focused on a narrow range of subjects which may be broad or deep in themselves, while outside stimuli are occluded from perception. Sudden interruptions to monotropic states can be highly distressing and disorientating, proportional to the intensity of monotropic state and the severity of its ending. Such occurrences explain demand avoidance behaviour in Pathological Demand Avoidance. It is argued that the characteristic spiky skills profile is caused by which interests arouse amonotropic state, while other skills remain side felt experience (Milton, 2017). Monotropism (Murray, Lesser & Lawson, 2005) clearly offers much to elucidate traits associated with autism as compared to the main cognitive theories, conversely at present it is not widely recognised (Chown, 2017; Milton, 2017). As many research articles do not rely on autism theory (Chown, 2017), there is also little prevent further exploration of monotropism.The strength of autistic expertise and its implications for autism knowledge production: A response to Damian Milton. | Woods | Autonomy, the Critical Journal of Interdisciplinary Autism Studies
In addition there are issues with the ideology of autism being used to support PDA, with it being a non-progressive medical model of disability (Leatherland and Chown 2015). For instance the demand behaviours of PDA are due to need to reduce anxiety (Newson et al 2003) and subsequently PDA is part of the autism, yet anxiety is not on the autism diagnostic criteria (American Psychological Association 2013; World Health Organisation 1992). Recently autism diagnoses are moving away from a categorisation approach to a dimensional approach, which PDA does not follow (Wood, 2017a); therefore it could be argued this recent research on PDA are not contributing to modern interpretations of autism. O’Nions et al (2014) and O’Nions et al (2016) are symptomatic of the underlying issues of Newson et al (2003) criteria, which were formulated in 1980 before widespread adoption of the triad of impairment and ignoring results from the exponential growth of autism research from the late 1990s (Lai et al 2014). More pertinently the recent PDA literature refers to the dated and mythical “typical” autism (Langton and Frederickson 2016; O’Nions et al 2016).
A key argument for need for PDA adjustments is that they are needed because individuals believed to have PDA display demand behaviours to avoid the anxiety caused by societal expectations. There is growing evidence from autistic academics and the autistic population that all autistic individuals’ mental health benefits from being in charge of their own lives, partially due to the pressures of conforming to societal demands (Milton and Moon 2012; Milton and Sims 2016; Stewart 2012; Woods 2017b). Autistic individuals also face additional societal pressures from psycho-emotional disablism (Milton 2013b; Milton and Lyte 2012; Stewart 2012; Woods 2017b), which factors into the higher suicide rates and potentially higher rates of self-harming for autistic individuals (Maddox et al 2017). The “need” for PDA is no more significant than the need for better support for the entire autistic population, which would likely benefit from experiencing PDA adjustments.
PDA could be blocking the development of more progressive social model inclusive education practices and therefore social justice for all stakeholders. This is as PDA is from a medical model of disability perspectives as PDA focuses on persons’ deviance from “typical autism” and the challenges this causes to other stakeholders (Langton and Frederickson 2016; Newson et al 2003; O’Nions et al 2014). Which is the opposite of the views of stakeholders in autism and wider inclusive education areas would like to see; more progressive social model adjustments (Dillon et al 2016; Hardy and Woodcock 2015; Milton 2013b; Pellicano et al 2014; Stewart 2012). PDA advocates are arguing for the use of a new label which is not needed to explain the actions of individuals (Dore 2016; Gillberg et al 2015; Langton and Frederickson 2016; Milton 2013a), this going against the notion that the UK education system is “needs-led” (Langton and Frederickson 2016). Subsequently PDA is fuelling the neoliberal infiltrated inclusive education discourse (Hardy and Woodcock 2015), further reducing the definition of the “mythical norm” (Milton et al 2016). In doing so PDA makes it harder for autism stakeholders to achieve social justice in education.
It can be argued that PDA is already a redundant label due to the lack of merit of a PDA diagnosis and vice versa; other labels describe its behaviours, it does not ensure understanding from individuals, support (Woods 2017a) or legal protection and its adjustments can already be implemented through other labels such as autism. It could be argued that if PDA was proposed today in the United Kingdom it would struggle to be taken seriously due to the fundamental flaws in the arguments for it. There are serious ethical concerns over the label, which have yet to be debated. It is my view that it is logical to support more adjustments & research for autism and other recognised SEND labels, including using PDA based adjustments for these labels.Critical Reflections on the Pathological Demand Avoidance debate: A response to The Practice MK blog and discussion. – Rational Demand Avoidance