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Pathological Demand Avoidance and the DSM-5: a rebuttal to Judy Eaton.

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My article "Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference." article has a response published by Dr Judy Eaton, called "A Response to Wood’s paper – Demand Avoidance Phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference." This is my rebuttal. It sets out key flaws in the stance of PDA as autism subtype & PDA would be excluded from autism if reasons used to remove subtypes from DSM5 were applied to it. I did ask for this to be peer reviewed, but the editor said that was not needed.
Pathological Demand Avoidance and the DSM-5: a rebuttal to Judy Eaton’s response
74 GAP, 21,1, 2020
Pathological Demand Avoidance and the DSM-5: a rebuttal to Judy Eaton’s response
Address for
correspondence
E-mail:
richardwoodsautism@
gmail.com
Acknowledgements
The author is autistic
and acknowledges he
meets the Elizabeth
Newson PDA Prole.
In many respects I support Judy Eaton’s sentiment
that those with PDA and their loved ones often face
exceedingly difcult situations that can adversely impact
anyone. I accept that people with PDA and their carers
require appropriate support. Such extreme anxiety as
Judy Eaton suggests above, as being associated with
PDA is not associated with autism. Many autistic people
do experience high levels of anxiety as a co-occurring
condition. For a more in depth discussion on this topic,
please see Woods (2020). Many autistic persons are not
receiving a diagnosis and something does need to be
done about this. In my view it should be more benecial
to lower clinical thresholds for autism (Woods et al, 2019),
instead of adding a new autism subtype, although some
argue that the autism diagnostic criteria have been
broadened too much (Happé and Frith, 2020). I must
stress, that I recognise Judy Eaton and her clinic are
making a positive difference to many persons’ lives.
The clinical need for PDA has been contested for almost
two decades (Garralda, 2003; Green et al, 2018; Malik
and Baird, 2018). In addition some argue PDA is also
found in non-autistic people and is not conned to
autistic persons (Egan, 2019; Gillberg, 2014; Malik
and Baird, 2018; McElroy, 2016). This is supported by
individual cases of non-autistic persons in PDA research
samples (O’Nions et al, 2015; O’Nions et al, 2016; Reilly
et al, 2014), in addition to other empirical evidence set
Introduction
The recent response by Judy Eaton to my commentary
on the 2018 National Autistic Society Pathological
Demand Avoidance (PDA) conference raises some
interesting points about the nature of understanding
autism and how it is diagnosed. She accepts I raise
some valid points but challenges my preferred name
for PDA, Demand Avoidance Phenomena, claiming it is
not a recognised descriptor (Eaton, 2020). Nonetheless,
there are eight different names in the literature, the six
other alternatives are: Autism + PDA Traits; Extreme
Demand Avoidance; Newson’s Syndrome; Pathological
Demand Avoidance Syndrome; and Rational Demand
Avoidance (Woods 2019a); Demand Avoidant
Behaviour (Brede et al, 2017). Judy Eaton herself
dislikes the term Pathological Demand Avoidance,
specically expressing:
“Pathological demand avoidance, despite its
acceptance by the National Autistic Society as part
of the autism spectrum, is still highly controversial.
This may be, in part, due to the term ‘pathological’.
This is deemed by many professionals, myself
included, to be a derogatory and unhelpful name
for such a debilitating condition. Extreme anxiety
or extreme demand avoidance might be better.”
(Eaton, 2017, pages 199–200).
Pathological Demand Avoidance
and the DSM-5: a rebuttal to
Judy Eaton’s response
Richard Woods, independent scholar, Nottingham, UK
Editorial comment
Independent scholar Richard Woods has written the following reply to Dr Judy Eaton’s
response to his paper on Pathological Demand Avoidance (PDA). Dr Eaton’s response
and Richard Woods’ reply are both published in this issue of the GAP Journal.
Pathological Demand Avoidance and the DSM-5: a rebuttal to Judy Eaton’s response
GAP, 21,1, 2020 75
The DSM-5 matters to PDA
Judy Eaton mentions in her paper that all people with
PDA in the critiqued research were diagnosed with
autism using the criteria within DSM-5. Later she dis-
cusses how autism is portrayed in various editions of this
diagnostic manual over recent decades (Eaton, 2020).
However, she does not mention the position adopted by
the committee called the Neurodevelopmental Disorders
Workgroup that decided on what the autism criteria were
for the DSM-5. The workgroup deliberately removed
narrowly dened autism subtypes from the DSM-5, as
all attempts to divide autism have failed through both
biomarker and behavioural methods (Woods et al, 2019).
Specic concerns included insignicant differences
between groups of autistic persons who met the clinical
threshold for Asperger’s Syndrome (ie had no speech
delay) and other subtypes. There is no evidence for
differential treatment between subtypes (Happé, 2011).
Furthermore autism subtypes were removed to reduce
the stigma for all autistic persons (Happé, 2011). If the
logic of the workgroup is applied to PDA, it would be
excluded from the autism spectrum.
An inuential study that investigated diagnostic prac-
tices across 12 specialist clinics in the United States of
America, found that the best predictor of which particular
subtype an autistic person was diagnosed with, was the
individual clinic they attended (Fletcher-Watson and
Happé 2019; Happé, 2011; Happé and Frith, 2020).
These results would need to be deemed false for autism
subtypes to become widely accepted again. Particularly
using similar conceptualisations of autism subtypes as
discrete diagnoses, the dual Autism + PDA diagnosis
would not be valid for such research as it pathologises
more characteristics than a traditional autism diagnosis
(Moore, 2020). Research investigating differences
between High Functioning Autism and Asperger’s Syn-
drome either found no differences between the groups or
any differences resulting from circular practices, such as
the diagnostic methods to identify each subtype (Happé
and Frith, 2020). Any future replication studies need
to ensure that any difference between PDA and other
subtypes is not from circular methods. Such research
sets part of the evidence base required for PDA being
established as an autism subtype.
out in my initial article (Woods, 2019b).). It is ethical to
challenge research when it is being used to argue that
PDA is found in a proportion of autistic individuals and
which did not comment on the fact that others have said
PDA is not specic to autism. This following quote by
Judy Eaton is applicable to the narrow conceptualising
of PDA as an autism subtype:
“Professionals and teams working with children need
to become aware of the ways in which girls can
mask their difculties, and need to move away from
using the DSM as a ‘bible’. Stating that someone
does not full criteria, when these criteria are based
on upon a ‘male’ presentation of a disorder, is short
sighted in the extreme.” (Eaton, 2017, page 176).
Despite the controversies and debates which will
be claried by further research, PDA is here to stay.
Moreover, whatever PDA is, it can only be formally rec-
ognised by the diagnostic manuals, when its screening
and diagnostic tools produce valid and accurate meas-
urements (Woods, 2020). Currently, PDA has neither
a standardised prole or tools that provide both valid
and accurate measurements. In the commentary article
I am clear on six diagnostic traits that are needed for
PDA identication, but this is not universally agreed
(Woods, 2019b), as they cannot be as the research is
still ongoing. This situation is in some ways similar for
autism as many clinicians use diagnostic proles and
tools to guide their opinion when making a diagnosis.
There is substantially greater consensus over what
autism is and is not. Our current understanding of autism
has certain xed points that are well established, such
as anxiety is diagnosed as a co-occurring condition
(Fletcher-Watson and Happé 2019; Woods, 2020).
Another xed point is how autistic people tend to display
Rigid and Repetitive Behaviours and Interests (RRBIs) as
they are often benecial for them. Contrarily, RRBIs are
the result of fear of aversive thoughts that is accepted not
to be the direct result of autism. These xed points have
led to the The Diagnostic and Statistical Manual of Mental
Disorders, Fifth Edition (DSM-5) criteria but these are
subject to change as research continues. Such bounda-
ries are presently lacking from PDA. It is inappropriate to
compare diagnostic practices of PDA to autism.
Pathological Demand Avoidance and the DSM-5: a rebuttal to Judy Eaton’s response
76 GAP,21,1, 2020
McElroy, R (2016) PDA – is there another explanation?
(online magazine article) available from
https://thepsychologist.bps.org.uk/volume-29/january-2016/
pda-there-another-explanation (accessed 24 January 2020).
Moore, A (2020) Pathological Demand Avoidance: what
and who are being pathologized and in whose interests?
Global Studies of Childhood 10 (1) 39-52.
O’Nions, E, Quinlan, E, Caceres, A et al (2015)
Pathological Demand Avoidance (PDA): an examination
of the behavioural features using a semi-structured
interview (unpublished research) available from
www.pdaresource.com/les/An%20examination%20of%20
the%20behavioural%20features%20associated%20with%20
PDA%20using%20a%20semi-structured%20interview%20
-%20Dr%20E%20O’Nions.pdf (accessed 12 May 2020).
O’Nions, E, Gould, J, Christie, P et al (2016) Identifying
features of ‘pathological demand avoidance’ using the
Diagnostic Interview for Social and Communication
Disorders (DISCO) European Child & Adolescent
Psychiatry 25 (4) 407–419.
Reilly, C, Atkinson, P, Menlove, L et al (2014)
Pathological Demand Avoidance in a population-based
cohort of children with epilepsy: four case studies
Research in Developmental Disabilities 35 (12) 3236–3244.
Woods, R (2019a) Pathological Demand Avoidance
(PDA) in F Volkmar (ed) Encyclopedia of Autism
Spectrum Disorders New York: Springer Nature.
Woods, R (2019b) Demand avoidance phenomena:
circularity, integrity and validity – a commentary on
the 2018 National Autistic Society PDA Conference
Good Autism Practice 20 (2) 28–40.
Woods, R (2020) 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 (2019) Child and
Adolescent Mental Health 25 (2) 68–70..
Woods, R, Waldock, K, Keates, N and Morgan, H (2019)
Empathy and a personalised approach in Autism Journal
of Autism and Developmental Disorders https://link.springer.
com/article/10.1007%2Fs10803 -019 -04287-4.
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Excluded from school: autistic students’ experiences of
school exclusion and subsequent re-integration into school
Autism & Developmental Language Impairments 2 (1), 1–20.
Eaton, J (2017) A guide to mental health issues in
girls and young women on the autism spectrum:
diagnosis, intervention and family support London:
Jessica Kingsley Publishers.
Eaton, J (2020) A Response to Wood’s paper – Demand
Avoidance Phenomena: circularity, integrity and validity –
a commentary on the 2018 National Autistic Society PDA
Conference Good Autism Practice, 20 (2) 40a - 40f.
Egan, V (2019) The assessment of adult PDA: implications
from studies in the general population (online report)
available from www.pdasociety.org.uk/blog/2019/04/
research-meeting-report (accessed 24 January 2020).
Fletcher-Watson, S and Happé, F (2019) Autism: a new
introduction to psychological theory and current debate,
2nd edition Abingdon-on-Thames, UK: Routledge.
Garralda, E (2003) Pathological demand avoidance
syndrome or psychiatric disorder? (online only article)
BMJ Archives of Disease and Childhood 88 (7)
https://adc.bmj.com/content/88/7/595.
responses#pathological-demand-avoidance-
syndrome-or-psychiatric-disorder.
Gillberg, C (2014) Commentary: PDA – public display
of affection or Pathological Demand Avoidance? –
reections on O’Nions et al (2014) Journal of Child
Psychology and Psychiatry 55 (7) 769–770.
Green, J, Absoud, M, Grahame, V et al (2018)
Demand avoidance is not necessarily deance: authors’
reply Lancet Child & Adolescent Health 2 (9) 21.
Happé, F (2011) Criteria, Categories and Continua:
autism and related disorders in DSM-5 American Academy
of Child and Adolescent Psychiatry 50 (6) 540–542.
Happé, F and Frith, U (2020) Annual Research Review:
looking back to look forward – changes in the concept
of autism and implications for future research Journal
of Child Psychology and Psychiatry available from
https://onlinelibrary.wiley.com/doi/abs/10.1111/jcpp.13176.
Malik, O and Baird, G (2018) Commentary: PDA - what’s
in a name? Dimensions of difculty in children reported
to have an ASD and features of extreme/Pathological
Demand Avoidance: a commentary on O’Nions et al (2018)
Child and Adolescent Mental Health 23 (4) 387–388.
... If DAP is an anxiety-based entity, it 4 represents a different clustering of features to autism. This makes sense when one considers that all attempts to create valid subtypes have failed (Green et al, 2018;Kapp and Ne'eman, 2019;Woods, 2020b;Woods et al, 2019), results that show DAP is different to autism (Kapp and Ne'eman, 2019;Woods et al, 2019), indicate it is not a form of autism. ...
... The implications of non-autistic CYP present in DAP research samples is overlooked by Kildahl et al (2021). Many experts have expressed that DAP is seen in non-autistic persons (Green et al, 2018;Woods, 2020b), supporting these research results, and it is likely the number of autistic CYP in DAP samples has been over reported; recently it is recognised Newson et al (2003)'s cohort contains non-autistic persons (Eaton and Weaver, 2020;Soppitt, 2021). Logically, DAP cannot be a form of autism if it is seen in non-autistic persons. ...
Preprint
Full-text available
This is a commentary on the recent Demand-Avoidance Phenomena (DAP, sometimes called Pathological Demand Avoidance) by Kildahl et al (2021). I am supportive of the observations on the rigour of the limited evidence base for DAP; that at present no firm conclusions can be made upon what features are associated with it, and it is premature to definitively conceptualise DAP as a distinct Disorder, autism subtype, or autistic trait. Building upon these results by highlighting crucial issues with the axiology of most DAP research, which views it to be an autism spectrum disorder, and detailing some of its adverse impacts. Drawing particular attention to the limitations of the Extreme Demand Avoidance-Questionnaire, for instance, that Comfortable in role play and pretending trait does not cluster with other demand-avoidance traits. DAP research is contextualised in research excellence guidelines, stressing the importance of including non-autistic persons with DAP in its research, by conceptualising it as a discrete disorder. There is a need to investigate the potential bias in the United Kingdom “PDA is an ASD” community, and the conflicts of interest plausibly present in much DAP research. Persons with DAP and autistic persons deserve better than viewing it as an autism spectrum disorder.This is only the first draft, and it is currently awaiting suggestions from the journal’s editors before being formally submitted. Substantial amount of the draft is likely to be removed as it is over the word and reference limits for the journal. There is no guarantee that this commentary will be accepted for publishing. If it is published it should open access, as London South Bank University has a deal to publish articles open access with many Sage journals, including Autism.
Conference Paper
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Demand-Avoidance Phenomena (DAP, sometimes called “Pathological Demand Avoidance”) is a proposed mental Disorder. Currently, in the United Kingdom (UK) it is mainly viewed as a “Profile of ASD” to extent it is a “culture-bound concept”. Yet, there is little consideration if this should be the case, and more pertinently, why “DAP Profile of ASD” is a “culture-bound concept” in the UK; considering the broad acknowledgement DAP lacks good quality evidence to suggest what it is and what features are associated with it. This talk explores how DAP’s contested, unstable spikey profile intersects with cultural and societal factors to construct “DAP Profile of ASD”, and in the process how it is used to control various autism stakeholders. Particularly, vulnerable autistic persons and autism caregivers. Thus, show that proposed autism subgroups, including “DAP Profile of ASD” and "Profound Autism" are mainly about politics, and it seems unwise to view DAP as a “Profile of ASD”. There is an urgent for more balanced and accurate information to be provided to autism stakeholders, and especially vulnerable groups. This talk builds on some of our previous work on DAP. Specifically, these talks: 1) Rational (Pathological) Demand Avoidance: what it is not, what it could be & what it does. A link to it below: https://www.researchgate.net/publication/325181432_Rational_Pathological_Demand_Avoidance_what_it_is_not_what_it_could_be_what_it_does 2) Demand-Avoidance Phenomena (“Pathological”/ “Extreme” Demand Avoidance): As a biopower identity? A link to it below: https://www.researchgate.net/publication/355427579_Demand-Avoidance_Phenomena_Pathological_Extreme_Demand_Avoidance_As_a_biopower_identity
Conference Paper
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Presently, in the United Kingdom, Demand-Avoidance Phenomena (DAP, sometimes called “Pathological Demand Avoidance”) is simultaneously gaining significant interest and controversy. Its leading proponents assert that DAP is one of the autism spectrum disorders, despite the lack of consensus and evidence to indicate what it is, and how to view DAP. Consequently, there is much debate over how to conceptualise DAP, with divergent outlooks for DAP pathologising features not typically included in an autism diagnosis, to DAP being a magpie disorder containing features from many accepted diagnostic entities. This talk we discuss its four main schools of thought, and they each evolved. Finally, focusing on how DAP can be conceptualised as a standalone diagnosis, and can be modelled as a generic stress management process. These are the slides delivered to a talk to Children and Technology Lab: University of Sussex on the 18th of November 2021. The talk is intended to provide an overview on how PDA might be conceptualised by those studying PDA. Potential discussion topics further resources. What the academic literature says about Newson et al (2003):� https://rationaldemandavoidance.com/2020/10/17/what-the-literature-and-richard-woods-say-about-newson-et-al-2003/ Why we should ignore Phil Christie's views DAP is an Autism Spectrum Disorder video:� https://www.youtube.com/watch?v=GSIdMzDMC-w Comprehensive overview to DAP & its broader debates seminar:� https://www.youtube.com/watch?v=22ESXsCnisM How “DAP Profile of ASD” is used to control autism stakeholders video:� https://www.youtube.com/watch?v=Ulc3eIG3og8
Conference Paper
Full-text available
Presently in the United Kingdom (UK), the proposed Disorder, Demand-Avoidance Phenomena (DAP, sometimes called “Pathological”/ “Extreme” Demand Avoidance), is a “culture-bound concept”. DAP is mainly characterised as a high anxiety causing a person to display frequent avoidance of “ordinary” (non-autistic) demands, with the dominant outlook being it is a “Profile of ASD”. Despite this there has been little consideration within the literature for if “DAP Profile of ASD” should be a “culture-bound concept” in the UK? This conference talk breaks down various factors, including actions of prominent “DAP Profile of ASD” proponents to explain how DAP has become a “culture-bound concept” in the UK. Contextualising many different debates which are generally ignored by its proponents, and typical research and practice standards which suggest that DAP should never have been allowed to form a “culture-bound concept”. Additionally, I detail how DAP is used to control various autism stakeholders. I conclude with ways to move forward, by adopting a scientific method-based approach to research & practice for DAP, thus adhering typical research & practice standards. It was an online event held over Zoom. I have added to the material presented yesterday, to add relevant, or necessary information. One can access a recording of the talk through this link below: https://www.youtube.com/watch?v=Ulc3eIG3og8
Conference Paper
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These are slides of my 15 minute talk on why PDA can be viewed as a discrete Disorder at a lower diagnostic threshold. During the talk, I did not have time to fully describe or comment on all slides to as much detail as I like. I can answer any questions about particular slides.
Article
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There is no abstract to this. I will note I insisted on using person first language to avoid antagnoising JADAD reviewers or editors. I used Pathological Demand Avoidance instead of Demand Avoidance Phenomena to ensure the article would appear in searches for PDA, while lowering word count.
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This article explores key reasons for justifying the proto impairment of Demand Avoidance Phenomena (DAP), by investigating the integrity and validity of the construct. DAP is aggressively pushed by non-autistic stakeholders as an autism subtype, to date the circularity around DAP’s construction and operation has received little attention. We deconstruct evidence for DAP and contextualise the DAP profile in wider discourses, specifically of medical, ethics and working practices with autistic persons. Crucially, we demonstrate there is no cognitive or behavioural trait specific to DAP. Finally, we present the results of citation survey that indicate the DAP community has formed a community of practice and we discuss the implications this has on the language around the construct. The circular approach to the construct undermines efforts to research it, while providing a misleading picture of current evidence levels and wider debates. We propose that going forward the scientific method and embracing its’ conflicting nature, is the ethical manner to approach DAP.
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Pathological demand avoidance (PDA), a term first used by Elizabeth Newson in the 1980s, refers to a collection of behaviours that children will demonstrate to avoid instructions (and tasks) that they perceive as demands. These children are postulated to be averse to anything that is perceived as a demand placed on them. PDA features are commonly encountered in children with autism but PDA is not a subtype of autism nor a separately diagnosed mental, behavioural or developmental disorder in any of the major classification systems (ICD‐10 or DSM‐5). Such behaviours are not confined to children with autism and debate continues regarding its existence as a distinct phenomenon and if such a phenotype exists whether it is merely a part of autism or a separate condition. We comment on O'Nions and colleagues’ study that explores common themes/behavioural traits in children with autism spectrum disorder (ASD) who also fit the phenotypic description of PDA. We explore how the current classification systems capture features of PDA in autism with diagnoses of common comorbidities in ASD (such as disruptive behaviour/conduct disorders, OCD and anxiety), but to many clinicians and parents this seems an inadequate description. What remains to be explored are the trans‐diagnostic temperamental and cognitive traits of children with PDA features, such as cognitive rigidity and intolerance of uncertainty. It is important to understand why some children are demand avoidant and identification of these factors (individual and systemic) helps in management much more than classifying them with an additional label. O'Nions et al. have helpfully provided further insight into several underpinning traits/dimensions of children with PDA features; understanding these will help develop effective strategies for parenting demand‐avoidant children. Read the Response to this article at doi: 10.1111/camh.12287
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A group of children presents with a rather peculiar type of oppositional behaviours, sometimes now subsumed under the label of ‘pathological demand avoidance’ syndrome, also increasingly referred to as PDA. Boys and girls with ‘this kind of PDA’ will do anything to avoid meeting demands of adults and children alike. The behaviours ‘used’ in maintaining avoidance range from openly oppositional or manipulative to ‘extreme shyness’, passivity and muteness. These behaviours in terms of expression of affection are rather the opposite of those associated with the commonly used meaning of PDA. However, the avoidant behaviour is quite often ‘publicly displayed’ and with no feeling for the inappropriateness of the, sometimes even, exhibitionist style of extreme demand avoidance (EDA). The ‘disorder’ was first heard of in 1980, when Elisabeth Newson presented the first 12 cases of what she believed to be a ‘new’ and separate syndrome and that she referred to as PDA. Even though PDA has attracted quite a bit of clinical attention in the United Kingdom and other parts of Europe (including Scandinavia), virtually no research has been published in the field so far (Newson, Le Maréchal, & David, ). Experienced clinicians throughout child psychiatry, child neurology and paediatrics testify to its existence and the very major problems encountered when it comes to intervention and treatment. It is therefore a major step forward that O′Nions and co-workers (this issue) have developed a new ‘trait measure’ for PDA (‘the EDA-Q’), a measure that appears to hold considerable promise for research, and eventually for clinical practice.