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Title:
Is Pathological Demand Avoidance a “meaningful subgroup” of autism?
Authors:
First author details.
Mr Richard Woods.
School of Law and Social Sciences.
London South Bank University.
103 Borough Rd.
London.
SE1 0AA
United Kingdom.
ORCID: 0000-0002-8292-632X
Is corresponding author and active address: richardwoodsautism@gmail.com
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Is Pathological Demand Avoidance a “meaningful subgroup” of autism?
Abstract.
Pathological Demand Avoidance (PDA) is a proposed Mental Disorder, from Elizabeth Newson, in the United
Kingdom. While excluded from the two main diagnostic manuals, PDA has garnered much interest and
controversy. While originally viewed as a new type of syndrome, a Pervasive Developmental Coding Disorder.
Presently there is much focus on PDA as an Autism Spectrum Disorder (ASD), that ignores broader discussions
around how PDA should be clinically viewed. Due to arguments against doing that in favour of diagnosing PDA
as an ASD. Charting the history of PDA from Newson’s research, through to how four main divergent schools
of thought developed. From PDA being viewed as rebranded autism through to symptoms resulting from the
interaction between autism and common co-occurring conditions. Conceptualising PDA as a common mental
disorder best conforms to Newson’s opinions and research. Various empirical research supports this outlook.
PDA can be diagnosed and researched independently of autism. Such an approach is needed to allow its full
nature to become clear through scientific-method research.
Key Words.
Autism Spectrum Disorder; Asperger’s Syndrome; Autistic Disorder; Demand Avoidance Phenomena; Extreme
demand avoidance; Pathological Demand Avoidance.
Introduction.
Proposed in 1980 as a new syndrome, Pathological Demand Avoidance (PDA) is, typically viewed as an Autism
Spectrum Disorder (ASD). The defining feature of PDA is its’ titular avoidance behaviours that are frequently
extremely difficult for all stakeholders to effectively regulate [1]. Image 1 shows how the Aggregated PDA
Profile relates to the Diagnostic Statistical Manual of Mental Disorders, 5th Edition (DSM-5) ASD criteria. The
former is composition of the four other PDA behaviour profiles in print [1; 2; 3; 4], highlighting how unstable
PDA is in clinical practice [2; 5; 6].
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PDA has limited social communication problems and Restricted and Repetitive Behaviours and Interests
(RRBIs). PDA Surface Sociability frequently has a confused worldview and is not caused from Theory of Mind
or Empathy deficits. This feature partially overlaps ASD due to 20% of autistic Child and Young persons (CYP)
passing a Theory of Mind test [7]. Additional overlapping traits include Delayed Speech Development,
Neurological Involvement and Passive Early History. Autistic persons often have poor coordination. Delayed
speech development is common in ASD [1; 8], being a diagnostic trait of Autistic Disorder in the DSM-IV [9].
The DSM-5 added Sensory issues to ASD and this overlaps one PDA article that conceptualises PDA as
neurodevelopmental in nature [4]. There are important clinical differences between PDA and autism. PDA has
more RRBIs than autism as much or most of PDA behaviours are obsessive in nature [1]. These are anxiety
based due to high anxiety being its central impairment [10; 11; 12]; however, Newson’s work occasionally
refers to panic and fear, but her article does not mention anxiety [1]. Anxiety is a recognised co-occurring
problem to autism [12; 13; 14]. PDA has superficial similarities with ASD
1
.
Image 1: Abbreviated DSM-5 Autism Spectrum Disorder
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criteria and the Aggregated PDA Profile.
PDA is surrounded by much controversy [2; 4; 5; 10;14; 15]. Numerous factors contribute to this situation, a
pivotal one is there is no consensus over how to clinically view it. The four main schools of thought on PDA
are: PDA is a rebranded autism as its features are seen throughout the autistic population; an Autism Spectrum
Disorder; a pseudo-syndrome resulting from interaction between autism and various co-occurring conditions; a
common mental disorder. This article presents an overview of these outlooks, by situating each in the historical
context of autism and PDA research.
1
Others may disagree with this interpretation of PDA and how it relates to autism.
2
Wording for the DMS-5 Spectrum Disorder criteria is from:
Evers K, Maljaars J, Carrington S, Carter A, Happé F, Steyaert J, Leekam S, Noens I (2020) How well are
DSM-5 diagnostic criteria for ASD represented in standardized diagnostic instruments? European Child &
Adolescent Psychiatry. doi: https://doi.org/10.1007/s00787-020-01481-z
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Newson’s Autism and PDA research.
Elizabeth Newson started collecting cases of PDA from her 2 clinics in Nottingham, United Kingdom (UK) in
1975 and initially presented PDA at a lecture in 1980 [1]. At a similar time, Newson and colleagues at the
University of Nottingham conducted research into autistic adult experiences, as part of this participants were
diagnosed utilising the Triad of Impairment of Wing and Gould. This study's participants had normal or near
normal intelligence, many participants would meet criteria for Asperger’s Syndrome [8]. Newson was aware of
the Triad of Impairment and a broader autism spectrum that would become widely adopted throughout the
1980s. Newson created her own, new diagnostic grouping called Pervasive Developmental Coding Disorders,
which she used at least from 1986 to 1996. This grouping included autism, PDA, dysphasia and dyslexia. This
was done as the autism spectrum was too narrowly defined and to allow dyslexia to be included. Likewise, it
makes more sense to lay people like parents. Newson worked in a specialist Coding Disorders clinic and in 1986
she questioned what the coding problems are found in persons with PDA [16; 17]. Importantly, the Pervasive
Developmental Coding Disorders grouping contains non-autistic persons.
In 1988 Newson analysed 36 PDA case files to reify its behaviour profile, including coding problems in social
identity, pride and shame [16; 17]. Newson spent the next 15 years researching this behaviour profile and only
refines it make it easier to construct diagnostic arguments [1]. Over this time period Asperger’s Syndrome is
formerly accepted into the main diagnostic manuals and the autism spectrum emerges in clinical practice [8].
Simultaneously, another 84 cases of PDA are added to Newson’s database to 120, indicating more than three
times as many individuals with PDA per year are being seen in Newson's clinics. Considering many persons
with PDA, would often be considered for a diagnosis of atypical autism or Pervasive Developmental Disorder
Not Otherwise Specified PDD-NOS) [1; 11]; the sudden rise in cases of PDA appears to be caused by
broadening of the autism spectrum in wider society. In 1996 Newson presented data comparing 40 autistic
persons to 50 persons with PDA [16]. Newson, never systematically investigated autism features in persons with
PDA [18], and excluded atypical PDA cases, often because a person presented atypical autism features. Nor
collected data on their intelligence, arguing the latter is not representative of their ability due to their obsessive
demand avoidance [1].
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In between 1996 to 2003 Newson transitioned away from her Pervasive Developmental Coding Disorders
diagnostic grouping for PDA. First produced in 1999 [19] and revised this in 2003 to “The “family” of
pervasive developmental disorders” [1]. The later diagram displays 4 constellations of symptoms each
representing a syndrome, Autistic Disorder, Asperger’s Syndrome, PDA and Specific Language Impairment.
The former two syndromes are drawn overlapping each other with 3 symptoms of the Triad of Impairment of
the “autistic spectrum”
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and connected to the latter 2 through genetic and other links. PDA is displayed
independently of the other syndromes, with 6 core symptoms, and not based on the Triad of Impairment [1].
Supporting Newson’s outlook PDA needs to be significantly different to Autistic Disorder and Asperger’s
Syndrome [1].
In the Newson et al supplementary notes
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, the authors argue against conflating the autistic spectrum with the
Pervasive Developmental Disorders. Additionally, explicitly stating PDA is a Pervasive Developmental
Disorder, not an ASD, and it would be a mistake to view PDA as such. An interesting point is that each person
with a Pervasive Developmental Disorder has a coding issue [1], which are not included in the diagnostic
grouping descriptions in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV)
[9]. Newson’s definition of Pervasive Developmental Disorders is broader than what is accepted and included
non-autistic persons due to including non-autism conditions. Likewise, Newson’s PDD-NOS definition is when
a person does not meet clinical threshold for either autistic spectrum, PDA and Specific Language Impairments
[1], thus it includes non-autistic persons. This is broader than accepted PDD-NOS definition in the DSM-IV,
which is intended for persons not meeting clinical threshold for Autistic Disorder and Asperger’s Syndrome [9].
Newson’s position that PDA is not autism, does not translate well into modern diagnostic practices and this
contributed towards a few opposing schools of thought on PDA.
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Newson et al refer to “Autistic Spectrum” as comprising Autistic Disorder and Asperger’s Syndrome.
4
Newson and colleagues’ supplementary files can be accessed below:
https://adc.bmj.com/content/archdischild/suppl/2003/07/02/88.7.595.DC1/887595supportingmaterial.pdf
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Newson was also an autism expert and appears well versed in its UK literature from the early 1980s onwards.
Over the course of her PDA research Newson espoused atypical views on PDA nosology that did not conform to
accepted understandings; Newson’s two proposed diagnostic groupings reflected the conditions she would see
as part of the Coding Disorder clinical practice [1; 16; 17]. Consequently, both diagnostic groupings contained
non-autism conditions and autistic persons. Newson repeatedly ignored opportunities to make PDA conform to
ASD understandings, like basing PDA behaviour profile on the Triad of Impairment. Nevertheless, other
contemporary autism experts disagreed with Newson, proposing it was simply variation of features within the
autism spectrum, and this is detailed next.
PDA is rebranded autism.
In 2002 prominent autism clinicians Lorna Wing and Judy Gould suggested that PDA is not a distinct syndrome
but features of PDA can be found throughout the autistic population. Both viewed PDA to be clinically useful
[15; 20] and developed unpublished PDA Diagnostic Interview for Social and Communication Disorders
(DISCO) items
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[2; 5; 11; 18; 21]. Wing separately argued it remains to be seen if PDA is a distinct syndrome
[22]. Newson and colleagues counter in their supplementary notes, that PDA is not just Asperger’s Syndrome,
and there are crucial clinical differences between the two conditions. Autistic academic Damian Milton posited
in 2013 that there is no characteristic specific to PDA and its features can be found in autistic persons; for
instance, comfortable in role-play and pretend are displayed by successful autistic actors. Milton contests that
differences between autism and PDA evaporate under scrutiny [20]. Building on Milton’s deconstruction,
Allison Moore argues that PDA is the pathologising of autistic persons for transgressing various cultural norms,
primarily through asserting their self-agency [23]. Such viewpoints are to be expected considering there is no
feature specific to either autism or PDA [11; 15; 20; 22; 24; 25]. Probably contributing to similar perspectives
that PDA is an autism subtype or subgroup.
Scholars reviewing Hans Asperger’s case studies for autism have found features of PDA, observing spiteful or
malicious behaviours might be triggered without warning [26; 27]. Lorna Wing comparing Leo Kanner’s and
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Sources contradict each other if there were 17 [11], or 15 original PDA DISCO questions [2;21].
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Asperger’s respective work, note they both contain examples of behaviour problems, aggressiveness towards
people and damaging objects. Relevant features of Kanner’s work include a remarkable ability to mimic other
people's actions, up to entire sequences of performances. This was done automatically, without understanding
the meaning of the copied behaviours. Most striking of all is an obsessive high anxiety for perseverance of
sameness, when extreme behaviours, such as tantrums and conduct problems are triggered when the
environment is unexpectedly changed. Such reactions can be expected from autistic persons, from every attempt
to interact with them that is not on their terms [8]. When presented with this overlap between PDA and early
autism clinical literature, one can empathise with why some view PDA to be inherently autism.
PDA was a Pervasive Developmental Disorder and is now an Autism Spectrum Disorder.
Drawing upon Newson’s 1999 diagram, it was first argued that PDA was part of the autism spectrum in 2007. In
this diagram PDA is grouped in the Pervasive Developmental Disorders, with Autistic Disorder, Asperger’s
Syndrome and PDA. It is worth noting that accepted Pervasive Developmental Disorders of Childhood
Disintegrative Disorder and Rett’s Syndrome are missing. Through the public commonly referring to Pervasive
Developmental Disorders as the Autistic Spectrum, PDA is therefore an Autism Spectrum Disorder [15]. This
argument is later expanded upon to argue that as our understanding of PDA evolves, its list of traits will reduce
as autism has to the Triad of Impairment [11]. Due to Newson’s broader definitions for Pervasive
Developmental Disorders, the logic that PDA is an ASD has been used to include non-autism conditions of
Attention Deficit Hyperactivity Disorder (ADHD), dyslexia and dyspraxia in the autism spectrum [12]. The two
main justifications for PDA being an ASD are that PDA best explains certain behaviours. Subsequently, these
individuals need different educational approaches to other autistic persons, like requiring, novel, spontaneous
and humours approaches [1; 15; 16; 17]. Hence, PDA is receiving substantial interest and support by some UK
organisations.
Key articles repeatedly discuss the interest in PDA in the UK and refer to activities of organisations that support
the outlook that PDA is an ASD [2; 5; 10]. Particularly, they mention the inclusion of education guidelines by
the Autism Education Trust (AET) and over-subscribed annual conferences held by the National Autistic
Society. However, they do not provide wider pertinent information. The Autism Education Trust director at the
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time of these articles is line-managed by the National Autistic Society [28]. One co-author of these articles
being on various AET boards [29]. The National Autistic Society recognised PDA in 2008
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. The information
displayed on the charity’s website about PDA was controlled by the PDA Development Group
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, with some of its
members being authors of key articles [2; 5], and the Lorna Wing Centre is represented within this group.
Despite the recognition by AET and the National Autistic Society, PDA is not diagnosed universally across the
UK [30] and remains controversial.
Wing et al [31], draw upon their clinical experience, expressing it is hard to mark the boundaries between
autism subtypes and other conditions, partially because of how autistic persons often transition between
subtypes. They went onto note such challenges apply to all proposed subtypes, as the paper mentions PDA these
issues are applicable to it. This is supported by Newson’s observations that persons can transition into any
condition in her diagnostic groupings, including PDA [1; 17; 19]. Empirical research suggests a range from 30%
of autistic CYP developing into a different subtype [32], and up to 86% of autistic persons receive an alternative
form of autism diagnosis. Considering this figure is from 2012 [33], it is unlikely to include PDA diagnosis. A
study analysing diagnostic patterns for 12 autism clinics, found the best predictor of which certain subtype a
person was diagnosed with was the exact clinic they attended [3; 34; 35]. Research investigating differences
between High Functioning Autism and Asperger’s Syndrome found either no significant differences or resulting
from circular practices [35]. This body of evidence strongly suggests that if PDA is shown to be different to
autism, it is not part of the autism spectrum.
A leading PDA expert suggests debating the nature of what PDA might be is a distraction from diagnosing PDA
as an ASD [11; 15; 29]. Possibly explaining why O’Nions and colleagues ignore the rationale of the
Neurodevelopmental Disorder Workgroup ’s for removing autism subtypes from the DSM-5 [2]: (1) There is no
evidence for differential treatment between subgroups; (2) Negligible differences between groups of autistic
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See page 4 and 12 of Pathological Demand Avoidance Syndrome: Awareness Matters:
http://www.pdaresource.com/files/pda-awareness-matters-booklet.pdf
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See PDA Development Group Terms of Reference 2016 for more information:
https://rationaldemandavoidancecom.files.wordpress.com/2020/08/pda-development-group-tor-july-2016.pdf
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persons who met the clinical threshold for Asperger’s Syndrome (i.e. had no speech delay) and other subgroups;
(3) to reduce the stigma for all autistic persons [34]. PDA was considered for inclusion for the DSM-5 but was
discounted due to a lack of evidence and not being well-known in the USA. This begs the question: why did
O’Nions and colleagues attempt to produce a meaningful ASD subgroup?
The argument that persons with PDA require different strategies quickly falls-down when contextualised in
wider discourses. Many autistic persons do not respond well to typical autism approaches [20], and so require
person-centred approaches. Plausibly explaining why comparable approaches are widely practiced
independently of PDA [36], and that PDA strategies are viewed as being good practice [27]. Crucially, most
interventions and approaches are symptoms or issues specific, and are often used widely among mental health
disorders, including autism adjustments like visual communication methods. Many clinicians do not find the
disorders within the DSM-5 useful when selecting treatments and determining prognosis [37]. Still, if one
accepts that PDA does exist and that it should be diagnosed; logically, all persons who meet its profile have
equal rights to receive a diagnosis, support and research, irrespective of if they are autistic or not.
By adopting Newson’s early views on Pervasive Developmental Disorders, it can be argued that PDA is an ASD
via the public conflating the diagnostic grouping with the autistic spectrum. Consequently, PDA needs to be
accepted as an ASD as it better explains actions of some autistic CYPs, and these have different educational
needs to the rest of those on the spectrum. Yet, most of the logic does not stand up to investigation. Partly
because it overlooks Newson’s views and actions in how PDA relates to autism. Furthermore, because it is
apparent that autism cannot be successfully divided, both scientifically and clinically. The next outlook for PDA
is that it is a common mental health disorder.
PDA is a common mental health disorder.
Since Newson et al published their research; there have been consistent views that PDA might represent a
variety of non-autism conditions. In 2003 Elena Garralda posited PDA features might be explained by either:
ADHD, Oppositional Defiant Disorder, Social Anxiety Disorder and that persons with PDA displayed possible
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signs of Schizotypal Personality Disorder [24]. Later it was suggested that PDA might be a form of trauma-
based constructs, either an Attachment Disorder or Personality Disorders [15]. Furthermore, PDA might be a
common disorder [38], seen in up to a few percent of certain populations [21]; specifically: Anorexia Nervosa,
some behavioural phenotype syndromes, Epilepsy, Japanese construct of Hikikomori, Language Disorders,
school refusal and selective mutism [38]. Other candidate PDA populations include: Anxiety Disorders;
Catatonia; Conduct Disorder; depression; dyslexia; dyspraxia; Schizophrenia [27]. Generally, these predictions
and supporting evidence is based on and based on Newson’s behaviour profile [15; 21; 24; 38]. Moreover, low
diagnostic thresholds; for instance, PDA is defined as a score of 5 or more on the original PDA DISCO
questions and including the presence of socially manipulative or shocking behaviour to avoid demands [21].
While Newson and colleagues stated social manipulative demand avoidance was universal in PDA. This outlook
for PDA best fits Newson’s original conceptualisations.
Features of PDA make it problematic conceptualising it as an ASD. Firstly, PDA has a more balanced gender
ratio than autism. Secondly, the structure and routine of traditional autism approaches contrast to PDA strategies
that involve humour, spontaneity and unpredictability. Thirdly, the PDA characteristics of preoccupation for
pretend/ role-play/ difficulty telling pretence from reality; regularly are either absent or delayed in autism [10].
Fourthly, the variety and frequency manipulative behaviours displayed in PDA are not associated with autism
[12; 18; 21]. Fifthly, the surface sociability difficulties in PDA are attributed to deficits in social identity, shame
and pride, not to Theory of Mind [1], which matters as autistic social communication difficulties are associated
with the latter theory. Sixthly, PDA central impairment is high anxiety, but anxiety is a known co-occurring
problem to autism [12; 13; 14]. Seventhly, PDA has a high rate of CYP not meeting the clinical threshold they
develop, from 44% - 89% [2; 21]. This is higher than equivalent figures for autism, of 0% - 47% [33]. Majority
of these characteristics can form differential markers between PDA and autism for purposes of diagnostic
assessment.
Limited evidence exists to support PDA as a common mental health disorder. There are examples of non-autistic
persons in PDA research [2; 18; 27; 39]. Moreover, a case study into PDA and Antisocial Personality Disorder
is another promising candidate, with signs of attachment problems, substance abuse, diagnoses of ADHD and
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dyslexia
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[12]. The latter a possible explanation of PDA behaviours [36]. A medium sized clinical research
sample indicates that PDA is predicted by High anxiety, ADHD and conduct problems [3]. This association is
also supported by more recent research indicating PDA is predicted by ADHD, emotional instability and
antagonism. The same research replicated prior results that PDA is associated with precursors of Personality and
Personality Disorders
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, and not autism [14; 40]. This evidence supports critique that PDA might be a “double-
hit” that it is not caused by autism in autistic persons [31]. Also, ADHD, conduct problems and Personality
Disorders can be linked to the environment, poor early caregiving and attachments [41; 42].
Newson argued that PDA and other syndromes in her Pervasive Developmental Disorder grouping were entirely
biological or genetically caused [1; 19]. The claim was later repeated in the literature [27]. This outlook is
contrasted by those who suggested PDA might be a form of trauma related conditions like Attachment Disorder.
Damian Milton countered that it is plausible that autistic persons can be traumatised by social interactions and
this can cause some of the demand avoidance seen in PDA; that it is potentially negligent by negating such
possibilities [20]. It has been noted that PDA behaviours can be explained by aversive experiences [20; 43].
More recently, Newson’s work has been contextualised in broader clinical literature that disorders in DSM-5
lack any biomarker evidence that can be used for diagnostic purposes [27]. Presently, we are moving to a
transactional understanding of PDA, where an individual’s situation and environment mutually interact together
[3; 20; 29; 36]. Research suggests there is no specific anxiety intrinsically related to autism, yet autistic anxiety
tends to be caused by hostile experience from interacting with others [44]. Newson and others were incorrect
about PDA’s aetiology instead it is likely related to trauma and aversive experiences.
Other empirical studies support the view PDA is not an autism spectrum disorder. Theory of Mind is strongly
associated with autism, with some viewing it as synonymous with it [7; 11]. Ellie Bishop investigating the
relation between Theory of Mind, autism and PDA, found associations between the theory and autism, while no
association between PDA and Theory of Mind [45]. Accounting for this evidence it is possible that many of the
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I have been informed the ADHD diagnosis has been removed since the article was published.
9
The hypothesis that CYP with PDA shows precursors for Schizotypal Personality Disorder awaits direct
empirical testing.
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“false positives” on the EDA-Q, are positive identifications of PDA, but are being misattributed due to belief
PDA is a form of autism
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. As all attempts to divide autism have failed, Newson et al [1] and O’Nions et al [2]
respective research indicate PDA is not an ASD. O’Nions et al used features that are atypical of autism to try to
make PDA a meaningful subgroup of autism, primarily selecting features that were seen in less than 30% of
their sample [2]. If a feature is seen in less than 30% of the autistic population, it is unlikely to be related to core
autism traits, represented by the Dyad of Impairment, but instead associated to common autism co-occurring
conditions [27]. Hence, explaining various studies indicating PDA is not an ASD.
From its inception there has been significant debate within the PDA literature around what it might be besides
autism. Originally, Newson conceptualised PDA as a new type of disorder, she did not base PDA on the Triad
of Impairment that still underpins autism diagnostic criteria [9; 46]. There are clear clinical differences between
PDA and autism, which is supported by a growing body of empirical literature. Particularly, modern PDA
understandings focus on transactional interactions between the environment and person with PDA [3; 20; 29;
36], indicating it is possible a person can become sufficiently distressed enough to display PDA, especially on
lower diagnostic thresholds. It appears erroneous to take it as an axiom PDA is an ASD.
PDA is symptoms resulting from the interaction of autism and common co-occurring conditions.
Langton and Frederickson propose that PDA is a “triple-hit” of autism, conduct problems and anxiety [6], due to
small scale research finding associations between PDA and these constructs [10]. This perspective is like the
suggested “double-hit” of PDA, which mirrors hypotheses PDA might be interaction of autism and anxiety, or
autism and attachment problems [4]. These suggestions fall into a separate school of thought, that PDA is a
pseudo-syndrome resulting from the interactions of autism and common co-occurring conditions [3]. This
makes sense in autistic persons are most likely to attract a PDA diagnosis [23].
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For example, see unpublished research here:
https://network.autism.org.uk/sites/default/files/ckfinder/files/Differential%20diagnosis%20between%20PDA%
20and%20attachment%20disorder%20-%20Dr%20Judy%20Eaton.pdf
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Autism and co-occurring conditions often simultaneously interact and affect how autism and the comorbid
conditions are presented and experienced [3; 41; 43]. Consequently, co-occurring conditions frequently have
slightly different characteristics inside and outside of autism. For example, co-occurring anxiety is typically
associated with sensory sensitivity and cognitive misinterpreting. When this occurs in autistic CYP, it can be
overwhelming, leading to intense anxiety that potentially adds to emotional dys-regulation or avoidant and
controlling actions [3]. It is probable that PDA presents slightly differently in non-autistic populations when
compared to autistic persons. A small-scale study produced results that led to the suggestion PDA might be a
“triple-hit” of autism, conduct problems and anxiety [10]. It must be said if PDA contains features of non-autism
conditions, then it cannot be an ASD.
This article has charted the historical PDA literature from Elizabeth Newson’s formative research through to the
development of four distinct schools of thought over its proposed medical ontology. Newson viewed PDA as a
standalone diagnostic entity and took steps to support this view, such as excluding autistic persons from her
database [1]. Before Newson and colleague’s work was published in 2003, contemporary ASD clinicians in
2002 were arguing PDA is not a distinct syndrome but it reflects features common in the autistic population [11;
15; 20; 22]. Utilising Newson’s initial 1999 conceptualisation for the Pervasive Developmental Disorders it was
assumed PDA is an ASD due to the public conflating the broader diagnostic grouping with the autism spectrum
[11; 15]. Contradicting Newson’s later explicit opinion PDA is not an ASD and PDA should not be conflated
with autism [1]. At the same time, to the debates around PDA and its relationship to autism, it has been argued
that PDA is a broader mental health disorder, potentially being a form of Attachment Disorder or Personality
Disorder [15]. Emerging from initial research [10], is the outlook that PDA may be symptoms that result from
the interaction of autism and common co-occurring conditions [3].
A portion of PDA’s controversy arises from how PDA is used as a proxy for specific strategies and thus in the
process is turning established nosology on its head, leading to confused clinical and research perspectives [24;
36]. It appears that prematurely adopting Newson’s early scholarship has contributed to the misguided notion
that PDA is an ASD, in the process forming a community of practice around this as an axiom [27]. Autism
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clinicians and researchers are duty bound to improve entrenched low autism research standards [47; 48]. It is
imperative that we abandon the erroneous view that PDA is part of autism and in the process, this means stop
diagnosing it as a dual diagnosis with autism. Just because PDA is not in the main diagnostic manuals, does not
mean PDA cannot be diagnosed as a distinct diagnostic entity. Fundamentally, all disorders in the DSM-5 lack
biomarker evidence to underpin diagnostic tests [27]; they are all social constructs, i.e. they are all human kinds
and not natural kinds [28]. PDA as a proposed common mental health disorder, should be researched to
investigate how it fully manifests in all its predicted populations. Next, we discuss the case for diagnosing PDA
as a separate disorder.
PDA can be diagnosed independently of autism.
Currently, PDA is often diagnosed as “Autism and PDA Traits” or “ASD + EDA Traits”. Alternatively, PDA is
not formally included in diagnosis, but is recorded as part of the clinical formulation that an individual presents
the PDA profile [30]. Partly because PDA is not included in the two main diagnostic manuals and there is no
consensus over how to diagnose it [2; 5; 6; 23]. Moreover, PDA technically cannot be diagnosed as it lacks an
agreed diagnostic profile and standardised tools [23]. Consequently, it has been argued that a PDA diagnosis is
not a reliable indicator of PDA or not [6]. Accounting, for the diversity of perspectives, diagnostic practice and
clinical thresholds, this view is still valid.
Historically, PDA was diagnosed as a standalone diagnostic entity. The following literature establishes PDA can
be diagnosed independent of autism: (1) The at least 150 cases in Newson’s and colleague’s research [1]; (2)
Around 100 of 375 caregiver reported PDA diagnoses of large scale 2018 survey in the UK
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[30]; (3) The
EDA-Q validation study, contained 50 diagnosed CYP with PDA, it is unknown if any these individuals had an
autism diagnosis [5]. As this research was conducted before widespread adoption of dual “ASD + PDA Traits”
diagnosis, many of the 50 participants are unlikely to have an autism diagnosis; (4) Four out of 22 individuals
with PDA in a medium scale research into CYP with PDA educational experiences had a solo PDA diagnosis
11
The Being Misunderstood Report views PDA as an ASD Profile.
15
[6]; (5) At least 9 PDA case studies have PDA diagnosed as a standalone entity
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[12; 39; 49; 50; 51; 52]; (6)
The Elizabeth Newson Centre diagnosed PDA as a separate condition until 2015, using the unvalidated semi
structured interview created by Liz O’Nions and Francesca Happé
13
. It is possible to diagnose PDA
independently of autism in-line with Newson et al wishes [1].
Newson consistently did substantial acts if they benefited other stakeholders, primarily caregivers [1; 16; 17].
Newson proposed PDA as a standalone diagnosis, as it can often explain an individual’s actions better than
another syndrome
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[1; 15; 16; 17]. Likewise, creating her own Pervasive Developmental Coding Disorder’s
diagnostic grouping, in part as it is easier to explain to laypersons [16]. Newson suggested the best test for a
syndrome, like PDA is if persons with PDA are better explained by it, than other syndromes to caregivers and
teachers [17]. Furthermore, she is clear PDA is not an ASD and took steps to ensure it is different from autism.
Such as, removing cases of PDA with autism features from her database [1], and never systematically
investigating autism features. [18]. Diagnosing PDA as a standalone construct matches Newson’s intent with
PDA.
Newson’s perspectives that PDA is significantly different to autism are supported by present autism criteria.
Typically, persons referred for a PDA diagnosis are probably those who would be diagnosed with atypical
autism [1; 11; 15; 16], such cases would also be covered by DSM-IV PDD-NOS definition [9]. PDA might be
the relabelling of persons diagnosed with Asperger’s Syndrome [1; 18]. Comparison studies between DSM-IV
and DSM-5 ASD respective ASD criteria repeatedly show a reduction in autistic persons diagnosed, especially
for those who would traditionally receive either a PDD-NOS or Asperger’s Syndrome [53]. The drop-off rates
12
Eaton and Banting [52], and Trundle et al [12], both diagnosed PDA as a standalone condition that is within
the autism spectrum.
13
See Supplemental Table 1”, through the following link:
https://acamh.onlinelibrary.wiley.com/action/downloadSupplement?doi=10.1111%2Fcamh.12242&file=camh1
2242-sup-0001-Supinfo.pdf
14
This reason is used to justify PDA being an ASD, this begs the question why supporters of this outlook
disagree with PDA being diagnosed outside of autism?
16
are substantial, with a range of 21% to 37%, with the majority around 33% fewer autistic persons being
diagnosed under the DSM-5 [54; 55; 56; 57]. Conversely, The DSM-5 ASD criteria are not impacting overall
diagnosis rates and the rise in autism prevalence is likely from earlier identification of frequently overlooked
autistic populations [58]. Individuals likely to receive a PDA diagnosis are unlikely to be considered as autistic
under DSM-5. Therefore, PDA should not be diagnosed as a dual ASD diagnosis.
There are myriad other rationales for diagnosing PDA separately from autism. CYP have rights to a PDA
diagnosis under the Convention on the Rights of the Child [59]; such arguments are equally applicable to non-
autistic persons with PDA. As established previously in this section, it is possible to research and identify PDA
in non-autistic populations. There is insufficient evidence to reduce the number of PDA traits, for instance
“Neurological Involvement” awaits systematic investigation to see how it relates to PDA or not [1; 15; 17]. Four
case studies [39] and a small-scale population study [21], are insufficient evidence to decide if this trait is
important to PDA or not with current information. O’Nions and colleagues decided to discard the “Neurological
Involvement” trait in their opinion, as such features are too common in the autistic population to allow PDA to
be a meaningful subgroup [2]. Again, this is inadequate rationale for removing this trait from the PDA
diagnostic criteria. Vitally, using questions that assess for less PDA features
15
might also miss pertinent
information during assessment when formulating a clinical diagnosis and therefore appropriate support
packages; undermining the core justification for PDA that is needed for a particular set of support packages.
Diagnosing PDA as a standalone entity allows for examining if PDA features measure the trait they are assigned
to. Concerns have been expressed over the “Surface sociability, but apparent lack of sense of social identity,
pride, or shame trait”, that its features are hard to reliably measure [24]. Some of the features associated with
this trait do not directly assess deficits in pride/shame/ social identity, for example panic attacks indicate a
person is highly distressed. The extreme behaviours associated with PDA, are difficult for many people to be
around and so it is reasonable that caregivers are often afraid of their CYP and are afraid for them [1].
Additionally, caregivers and other adults reporting on CYP with PDA, displaying inappropriate behaviour and
15
O’Nions et al (2016) revised the number of PDA DISCO items from 15 to 11, in the process reducing PDA
traits being assessed 20 times by the original 15 questions [21], to 11 [2].
17
lacking a sense of right or wrong are highly subjective constructs; just from whose perspective are these
behaviours inappropriate and what actions do we judge to be right or wrong?
Panic attacks and other features associated to “Surface sociability, but apparent lack of sense of social identity,
pride, or shame” trait are more suited to PDA RRBI traits, for instance attacks should be moved to Lability of
mood, impulsive, led by need to control: Another feature is fantasising in the “Fantasising, lying, cheating,
stealing.” of the revised 11 PDA DISCO questions [2], is more appropriate to “Comfortable in role play and
pretending” trait. No-one is arguing that individuals are not presenting features described by PDA but are
thoroughly scrutinising its underlying axiology. There is a need to revise the clinical picture of PDA to allow it
naturally to find an appropriate diagnostic grouping. Maybe mimicking Newson by creating its own diagnostic
grouping [16; 17]?
The proposed nosology of PDA often affects how one interprets its features. In the previous paragraph I
establish that some features of the “Surface sociability, but apparent lack of sense of social identity, pride, or
shame trait” do not reflect it. Newson questioned what PDA’s Coding Issues were in 1986 [16; 17]. Newson
needed PDA to have coding problems for it to fit into her Pervasive Developmental Coding Disorder diagnostic
group. O’Nions et al [2] revised the wording of PDA DISCO questions while viewing PDA as an autism
subgroup, such as the “strategies of avoidance are essentially socially manipulative” trait and an associated
question “Socially manipulative behaviour to avoid demands” [21], were amended to “strategies of avoidance
that are essentially ‘socially manipulative’” and “Apparently manipulative behaviour” and its associated trait
[2]. There was no evidence to justify such changes and the literature acknowledges that manipulative aspects of
PDA make it problematic fitting PDA into the autism spectrum [12; 18; 21]; the later wording is more “autism-
like” than Newson’s descriptions. While some research supports this change viewing PDA social demand
avoidance as “socially strategic”, this study’s interview data was with the above revised question [60]. This is
circular as the “Apparently” descriptor means that social demand avoidant behaviour cannot be manipulative.
Prematurely adopting a proposed ontology for PDA often leads to fallacious assumptions.
18
Flawed assumptions impact the methodology and axiology of PDA research. O’Nions and colleagues mention
how most of the original PDA DISCO questions were not able to differentiate PDA from the autistic population.
Furthermore, Newson’s descriptions were not focused on features that differentiate PDA from the autistic
population, or “weighted” in terms of profile’s core features. Their research approach was to focus on
differentiating PDA among the autistic population and PDA’s “core” traits [2]. This approach directly
contradicts Newson et al’s perspectives, who argued PDA is not an ASD and removed persons with PDA who
displayed autism features from their database. PDA is not based on the Triad of Impairment [1], and O’Nions et
al do not attempt to reconceptualise PDA along such lines [2]. The fundamental point of Elizabeth Newson’s
work is that PDA’s acceptance in clinical practice warranted because it is significantly different to autism and
therefore is not autism [1; 16; 17]. To achieve an unbiased and accurate picture of how PDA presents bias, it
needs to be allowed to become its own category.
Traditionally PDA has been diagnosed independently from ASD and still is in significant numbers. Predicted
PDA populations and research are based on Newson’s descriptions, which are clinical different to autism. Thus,
there is a need to relatively maintain the integrity of PDA’s original conceptualisation to investigate how it fully
manifests in all its populations. In the process resolving questions, like is the “Neurological Involvement” trait a
core PDA trait of not? Separating PDA from autism, prevents PDA from becoming “autism-like”, while
allowing for its features to be re-categorised to appropriate diagnostic traits; for example moving panic attacks
to “Lability of mood, impulsive, led by need to control”. There is a pressing need to move on from viewing
PDA as an ASD.
Conclusion.
This article has explored the historical nature of PDA debates. Detailing how Elizabeth Newson’s PDA research
and views while evolving slightly, were essentially static across 3 decades, in that PDA is not an Autism
Spectrum Disorder. Nonetheless, amidst the interest and controversy four school of thought have emerged, with
3 worldviews relating PDA to autism, on the other hand, the outlook most in-line with Newson’s is that PDA is
a common mental health disorder. Majority of PDA empirical research supports Newson’s opinion that PDA is
not part of the autism spectrum. Therefore, the axiom PDA is an ASD needs to be abandoned to enable PDA’s
19
full nature to become established through ongoing research. The PDA literature has established that PDA can be
diagnosed independently of autism. There is an urgent need for validated diagnostic and screening tools for this
purpose, potentially the O’Nion’s and Happé’s semi-structured interview & the EDA-Q
16
are the most
promising candidates. Through scientific-method research, PDA will become uncontroversial.
Declarations.
Funding: Not applicable.
Ethics approval: Not applicable.
Consent to participate: Not applicable.
Consent for publication: Not applicable.
Conflicts of interests: Author/s receives funds for delivering autism and PDA training.
Availability of data and material: Not applicable.
Code availability: Not applicable.
Authors' contributions: Not applicable.
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16
The EDA-Q is only validated for use with autistic CYP [5].
20
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26
Title:
Is Pathological Demand Avoidance a “meaningful subgroup” of autism? A response to
O’Nions et al (2016).
Author/s:
First author details.
Mr Richard Woods.
Independent Scholar.
Nottingham.
Nottinghamshire.
United Kingdom.
ORCID: 0000-0002-8292-632X
Is the corresponding author and active email address: richardwoodsautism@gmail.com
27
Is Pathological Demand Avoidance a “meaningful subgroup” of autism? A response to
O’Nions et al (2016).
Proposed in 1980 as a Pervasive Developmental Disorder
i
(PDD), Pathological Demand
Avoidance (PDA) is presently, often viewed as an Autism Spectrum Disorder (ASD). The
defining feature of PDA is the titular demand avoidance that frequently presents extremely
difficult behaviours for all stakeholders to effectively regulate. Several years ago Elizabeth
O’Nions and others attempted to validate questions from the autism diagnostic tool, the
Diagnostic Interview for Social and Communication Disorders (DISCO), by analysing
archived case files. Justifying their research by how it is believed PDA has different
management strategies to traditional ASD approaches [1].
O’Nions and colleague [1] set out to make PDA a “meaningful subgroup”. Nonetheless, there
is lack of consideration if this is an appropriate course of action in 2015. Pertinently, there is
no consensus over how to identify PDA [2], meaning O’Nions and colleagues, decision to
view PDA as a “meaningful subgroup” is an arbitrary one. Yet, there are many reasons in the
literature that contradicts their approach. The specificity and validity of PDA has not been
established [3]. Some viewed PDA possibly being as common in up to 5% of the human
population [4], either as a form of Attachment Disorder or a Personality Disorder [5].
There are examples of persons without autism in PDA research samples [6]. It has been
suggested PDA is a “double hit” in persons with autism, as PDA might not be caused by
autism [4]; for example, persons with PDA display possible precursors of Schizotypal
28
Personality Disorder [3]. Or, a “triple hit” of: autism, anxiety and conduct problems [2].
Obviously, if PDA is not caused by autism, it cannot be an ASD. Likewise, if PDA is a
double or a triple hit, it literally cannot be something it is more than, like the autism
spectrum.
Features of PDA make it problematic conceptualising it as an ASD. Firstly, PDA has a more
balanced gender ratio than autism. Secondly, the structure and routine of traditional autism
approaches contrast to PDA strategies that involve: humour, spontaneity and unpredictability.
Thirdly, the PDA characteristics of preoccupation for pretend/ roleplay/ difficulty telling
pretence from reality; often are either absent or delayed in autism [7]. Fourthly, the variety
and frequency manipulative behaviours displayed in PDA are not associated with autism [8].
Fifthly, the surface sociability difficulties in PDA are attributed to deficits in social identity
and not to Theory of Mind [9], which matters as autistic social communication difficulties,
are associated to the latter theory. These characteristics can form differential markers that
exclude PDA from ASD, perhaps with PDA being a new type of disorder?
Modern autism understandings and diagnostic practice are based the triad of impairment.
This includes: deficits in communication, interaction and imagination (Restricted and
repetitive behaviours and interests) [10]. Newson et al [9] did not base PDA on the triad of
impairment, with both autism and Asperger’s Syndrome being compared to PDA. Crucially,
this approach was required as systematic investigation of autistic features were not
conducted. Newson and colleagues [9] stated it needs to be significantly different to both
Autistic Disorder and Asperger’s Syndrome.
29
More recently a single ASD profile has replaced the PDD diagnostic grouping. Elizabeth
Newson included Specific Language Impairments as part of the PDD umbrella [9]. In 2015
Phil Christie perceived Attention Deficit Hyperactivity Disorder, dyslexia and dyspraxia as
ASDs [8]. None of these conditions are a form of PDD or ASD. Newson and colleagues
expanded autism to wrap around PDA, instead of PDA naturally being an ASD. Despite this
Newson’s descriptions of indicate PDA might be a Neurodevelopmental Disorder.
O’Nions et al [1] utilised an arbitrary cut-off of 30% to produce features that might be more
specific to PDA. Though more research is needed to establish clinical cut-offs, as such, the
eleven DISCO questions are essentially unvalidated. Due to the conflicting nature of PDA,
the 30% threshold is meaningless, especially as diagnostic questions are arbitrarily added due
to their importance in clinical understandings; for instance, “Lack of co-operation” was over
the 30% threshold [1]. Logically, the question for “Anxiety” would also be added to the list,
as high anxiety driven demand avoidance is believed to be the central impairment of PDA [4;
7; 8].
Pertinently, O’Nions and colleagues ignore the rationale of the Neurodevelopmental Disorder
Workgroup
ii
’s for removing autism subgroups from the Diagnostic and Statistical Manual of
Mental Disorders, Fifth Edition (DSM-5) [1]: (1) There is no evidence for differential
treatment between subgroups; (2) Negligible differences between groups of persons with
autism who met the clinical threshold for Asperger’s Syndrome (i.e. had no speech delay) and
30
other subgroups; (3) to reduce the stigma for all persons with autism [6]. This begs the
question: why did O’Nions and colleagues attempt to produce a meaningful ASD subgroup?
Overall, it appears premature in 2015, to assume PDA was an ASD. Since then limited
evidence has emerged supporting PDA is seen persons without autism [6]. Child and young
persons have rights to a PDA diagnosis under the Convention on the Rights of the Child [11];
such arguments are equally applicable to non-autistic persons with PDA. It is possible to
research and identify PDA in non-autistic populations. Elizabeth O’Nions and Francesca
Happé developed an unvalidated semi-structured interview that assesses PDA as an
independent construct for the former’s doctoral research
iii
[12]. It has been utilised by the
Elizabeth Newson Centre to identify PDA. Going forward there is a need to separate PDA
from ASD.
Declarations.
Funding: Not applicable.
Ethics approval: Not applicable.
Consent to participate: Not applicable.
Consent for publication: Not applicable.
Conflicts of interests: Author/s receives funds for delivering autism and PDA training.
Availability of data and material: Not applicable.
Code availability: Not applicable.
31
Authors' contributions: Not applicable.
References.
1) O’Nions E, Gould J, Christie P, Gillberg C, Viding E, Happé F (2016) Identifying
features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social
and Communication Disorders (DISCO). European Child & Adolescent Psychiatry
25:407-419.
2) Langton E, Frederickson N (2016) Mapping the educational experiences of children
with pathological demand avoidance. Journal of Research in Special Educational
Needs 16:254–263.
3) Garralda E (2003) Pathological demand avoidance syndrome or psychiatric disorder?
Archives of Disease in Childhood. https://adc.bmj.com/content/88/7/595.responses
Accessed 21 June 2020.
4) Gillberg C, Gillberg C, Thompson L, Biskupsto R, Billstedt E (2014) Extreme
(“pathological”) demand avoidance in autism: a general population study in the Faroe
Islands. European Child & Adolescent Psychiatry 24:979–984.
5) 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.
6) Author/s (Date) Pathological Demand Avoidance and the DSM-5: a rebuttal to Judy
Eaton’s response. Good Autism Practice 21:74-76.
7) O’Nions E, Viding E, Greven C, Ronald A, Happé F (2014) Pathological demand
avoidance: Exploring the behavioural profile. Autism 18:538-544.
32
8) Trundle G, Leam C, Stringer I (2017) Differentiating between pathological demand
avoidance and antisocial personality disorder: a case study. Journal of Intellectual
Disabilities and Offending Behaviour 8:13-27.
9) Newson E, Le Maréchal K, David C (2003) Pathological demand avoidance
syndrome: a necessary distinction within the pervasive developmental disorders.
Archives of Disease in Childhood 88:595–600.
10) Milton D (2017) So what exactly is autism? In: Milton D (ed) A Mismatch of
Salience: Explorations of the nature of autism from theory to practice. Hove: Pavilion
Publishing and Media Limited, Hove, United Kingdom, pp 3-19.
11) Summerhill L, Collett K (2018) Developing a multi-agency assessment pathway for
children and young people thought to have a Pathological Demand Avoidance profile.
Good Autism Practice 19:25-32.
12) O’Nions E, Viding E, Floyd C, Quinlan E, Pidgeon C, Gould J, Happé F (2018)
Dimensions of difficulty in children reported to have an autism spectrum diagnosis
and features of extreme/‘pathological’ demand avoidance. Child and Adolescent
Mental Health 23:220-227.
i
PDD were a diagnostic grouping in the Diagnostic and Statistical Manual of Mental
Disorders, IV Edition, that included: Asperger’s Disorder, Autistic Disorder, Childhood
Disintegrative Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-
NOS), and Rett’s Syndrome. Due to how PDDs were replaced with a single ASD profile, it is
argued that PDA is an ASD [5].
ii
Francesca Happé was a member of the Neurodevelopmental Disorders Workgroup [6].
iii
O’Nions and Happé’s semi-structured interview is open access and can be accessed as
“Supplemental Table 1”, through the following link:
34
21st of June 2020.
Dear.
The letter article “Is Pathological Demand Avoidance a “meaningful subgroup” of autism? A
response to O’Nions et al (2016).” Is a reply to the ““Identifying features of ‘pathological demand
avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)” by
Elizabeth O’Nions and colleagues; Utilising information available from 2015, I set out to establish
that O’Nions and colleagues did not contextualise their work in broader PDA debates of the time.
Consequently, there central axiom of O’Nions et al (2016) article, that PDA is an autism subgroup is
highly problematic and needs substantially more justification. The metrics for O’Nions et al (2016)
are 24’000 views and an altmetric score of 38 (top 5% of all research). Since this article the PDA
community has formed a community of practice around the assumption PDA is an autism subgroup
(Woods, 2019). Thus, O’Nions and colleagues article is important research and it is ethical that it is
rigorously challenged in this situation.
The submission is slightly over the 10 references limit in the author guidelines, but this is a deliberate
choice to show the thoroughness of the points being made in the submission. I have used information
that was available in 2015 and is often produced by authors of O’Nions et al (2016), primarily as
individuals in other PDA scholarship; such as citing many of their referenced scholarship from their
article. In a few cases I have citing later scholarship as citing published works over unpublished works
is standard practice, as advised in the author guidelines. An example, Elizabeth O’Nions and others
have previously mentioned that the manipulative behaviours aspect of PDA differentiates it from
autism, but this is stated in the unpublished research “An examination of the behavioural features
associated with PDA using a semi-structured interview”, which is available here:
http://www.pdaresource.com/files/An%20examination%20of%20the%20behavioural%20features%20
associated%20with%20PDA%20using%20a%20semi-structured%20interview%20-
%20Dr%20E%20O'Nions.pdf
However, this point is later mentioned in print in the article by Trundle et al (2017), which is the
article I cite in the submission. The O’Nions and Happé semi-structured interview is first mentioned
in the previously mentioned unpublished research, but is now open access through the O’Nions et al
(2018) paper cited in the submission. I think that each article cited in the submission is justified.
35
A potential point of concern is that I have a conflict of interest in receiving payment for training in
autism and PDA. This is noted on the manuscript.
The address I provide is a private address and the journal does not have permission to publish that
address due to privacy reasons. Subsequently, I have reflected this in the address on the title page.
Overall, the submission “Is Pathological Demand Avoidance a “meaningful subgroup” of autism? A
response to O’Nions et al (2016).” is a robust critique of O’Nions et al (2016) research.
Thank you for your time and I look forward to receiving your reply.
Yours faithfully.
Mr. Richard Woods.
36
10th of November 2020.
Dear.
I have tried to act on the reviewer’s comments as best as possible, however I think the reviewer has neither
appropriately engaged with the original essay or is familiar with the recent work of Elizabeth O’Nions and
others. I have significantly expanded the original essay to detail the four main schools of thought around PDA’s
medical ontology and how these perspectives have evolved over time. In the process the basic assumption that
PDA is an ASD subgroup/ subtype is inaccurate and cannot be made when considering Elizabeth Newson’s
views and work. Subsequently, this is an important article in correcting the PDA literature. I set out my response
to the reviewer’s comments below in Table 1.
1.Table 1: Reviewer’s comments, with my response and actions.
Num
ber.
Reviewer
Comment.
My response and actions.
1
O'Nions et
al did
suggest in
2015 that
PDA
"could be"
seen as a
sub-group
with in
ASD, but
later on in
2018 and
further
they have
said that
PDA
features
are seen in
individuals
without
The reviewer misses the point of the original essay. I am clear in that essay that the
article is addressing gaps in the literature review made by O’Nions et al (2016), stating:
“O’Nions and colleague [1] set out to make PDA a “meaningful subgroup”.
Nonetheless, there is lack of consideration if this is an appropriate course of action in
2015.”
The entire point of the commentary essay is to highlight that if O’Nions et al (2016)
properly represented the literature, they could not adopt the axiology and methodology
they did in revising the PDA DISCO questions. I.e. O’Nions et al (2016) are doing
exactly what the reviewer accuses me of doing, selecting articles to make a point. I
specifically cover this in the revised essay stating:
“O’Nions and colleagues mention how most of the original PDA DISCO questions
were not able to differentiate PDA from the autistic population. Furthermore,
Newson’s descriptions were not focused on features that differentiate PDA from the
autistic population, or “weighted” in terms of profile’s core features. Their research
approach was to focus on differentiating PDA among the autistic population and
PDA’s “core” traits [2]. This approach directly contradicts Newson et al’s
perspectives, who argued PDA is not an ASD and removed persons with PDA who
37
ASD, so
hence the
whole
critique in
this article
becomes
dated. Had
the author
submitted
this in
2016 it
would be
appropriate
/ held sway
but not so
much now.
displayed autism features from their database. PDA is not based on the Triad of
Impairment [1], and O’Nions et al do not attempt to reconceptualise PDA along such
lines [2]. The fundamental point of Elizabeth Newson’s work is that PDA’s acceptance
in clinical practice warranted because it is significantly different to autism and
therefore is not autism [1; 16; 17].”
I would also contest that the original essay holds no sway, the reviewer acknowledges
the validity of comments further down, expressing:
“The author does have some valid and interesting point such as PDA is not equal to
ASD and vice-versa”
The reviewer appears not to be familiar with recent scholarship from Elizabeth
O’Nions and others on PDA. Typically articles from Elizabeth O’Nions and other
persons connected to the article, all view PDA to be part of the autism spectrum. This is
mentioned in the revised essay. Examples of specific work, since 2018 where such
individuals claim PDA is part of the autism spectrum include:
https://link.springer.com/article/10.1007/s41252-020-00167-6
&
https://www.pdasociety.org.uk/wp-content/uploads/2019/08/BeingMisunderstood.pdf
&
https://linkinghub.elsevier.com/retrieve/pii/S1751722220301566
&
https://network.autism.org.uk/sites/default/files/ckfinder/files/Differential%20diagnosis
%20between%20PDA%20and%20attachment%20disorder%20-
%20Dr%20Judy%20Eaton.pdf
I have compiled a document outlining how O’Nions and others systematically view
PDA to be an ASD. I have not included it as I do not wish to be published, but I can
share it with the editor upon request. The reviewer is mistaken to make these comment
that O’Nions et al have changed their views.
2
The
author's
other point
about PDA
being
diagnosed
as a
condition
is actually
I acknowledge that PDA being diagnosed in controversial and discuss this throughout
the article, including devoting an entire section to it, called “PDA can be diagnosed
independently of autism”. Specific comments include:
“Moreover, PDA technically cannot be diagnosed as it lacks an agreed diagnostic
profile and standardised tools”
And
38
still very
controversi
al and
PDA is not
a diagnose-
able
condition
in ICD-10
/ ICD-11
or DSM-5
(the main
classificati
on systems
in this
field).
Furthermor
e the larger
body of
experts
from the
UK who
have
written a
major
opinion on
this do not
consider
PDA as a
syndrome
or disorder
(including
Prof
Jonathan
Green,
Emily
Siminoff,
Gillian
Baird, Ann
Le Couteur
and others
“Still, if one accepts that PDA does exist and that it should be diagnosed; logically, all
persons who meet its profile have equal rights to receive a diagnosis, support and
research, irrespective of if they are autistic or not.”
The editor can read the appropriate section for more details, but I have wrote around
1700 discussing how and why PDA should be diagnosed independently from autism.
I have referenced both Green et al 2018a and 2018b articles. The former is reference 3
and the latter is reference 36. I discuss their work in relation to the four main schools of
thought relating to PDA’s medical ontology.
39
- Ref:
Green J,
Absoud M,
Grahame
V, et al.
Pathologic
al Demand
Avoidance:
symptoms
but not a
syndrome.
Lancet
Child
Adolesc
Health.
2018;2(6):
455-464.
doi:10.101
6/S2352-
4642(18)3
0044-0)
and the
author has
not
referenced
this work
or point
from it -
this article
argues that
PDA is not
a separate
syndrome
but a
phenotype
presentatio
n.
3
Interestingl
y in other
countries
I have referenced and drawn upon the work on non-UK based authors where relevant.
Including Falk 2019 [26] and 2 articles from Christopher Gillberg. The problem is that
PDA is mainly centred in the UK and its literature acknowledges this. Subsequently,
40
such as
USA or
Canada
PDA is not
even
discussed
as such -
but it is a
UK issue.
So the
range of
references
author has
selected
are biased
towards
proving his
point.
there is very little non-UK literature to reference. There are 2 articles from Northern
Europe which are not available in English except for in Google translate, but I have not
referenced these due to possible errors in translation.
The reviewer is being harsh with these comments.
4
Also on
Page 5
(line 6 -
11) when
the author
writes that
" Child and
young
persons
have rights
to a PDA
diagnosis
under the
Conventio
n on the
Rights of
the Child
[11]" - this
seems a bit
unusual
and
extreme as
I detail the case for diagnosing PDA a standalone diagnosis, primarily in the 1700 word
long “PDA can be diagnosed independently of autism” section.
There are various justifications for this, including scientific and clinical in nature. A
pertinent one, is that Elizabeth Newson never intended for PDA to be diagnosed as part
of the autism spectrum, expressing in her article supplementary notes:
“It is useful to describe Asperger syndrome and classic autism together as forming the
autistic spectrum; but in our view it is not useful to use ‘autistic spectrum disorders’ as
synonymous with ‘pervasive developmental disorders’, as has become more prevalent
lately in the UK. ‘Pervasive developmental disorders’ is the entirely satisfactory term
of DSM-IV, in which each word has a relevant meaning to describe the nature of this
‘family’; it is acceptable to parent groups in the United States and Canada, and it is
easily understandable when explained to parents in the UK, where lately it has been
increasingly used by such groups. PDA is a pervasive developmental disorder but not
an autistic spectrum disorder: to describe it as such would be like describing every
person in a family by the name of one of its members.” Link to supplementary files:
https://adc.bmj.com/content/archdischild/suppl/2003/07/02/88.7.595.DC1/887595supp
ortingmaterial.pdf
I do not see how the comments about this essay being suitable for an ethics or
philosophy journal are relevant anymore.
41
medical
condition
that is not
yet seen by
the larger
body of
doctors or
clinicians
as a
condition
can't
become a
human
right issue
or this type
of
argument
may be
done in a
philosophy
or ethics
journal.
5
The author
does have
some valid
and
interesting
point such
as PDA is
not equal
to ASD
and vice-
versa, the
fact that
gender
ratio is
nearly
same and
that PDA
type
Please see comments to the points about PDA being a valid diagnosis in my response to
the reviewer’s first comment.
I simply do not have room to go into full clinical details about how PDA overlaps
autism and other conditions in the essay I have written. It is already over the page limit
suggested for authors. I will add another section detailing how PDA features overlap
autism and other conditions, if requested by the editor?
I will add, I do briefly discuss how PDA overlaps other conditions, including autism
throughout the essay. Examples include:
“PDA has limited social communication problems and Restricted and Repetitive
Behaviours and Interests (RRBIs). PDA Surface Sociability frequently has a confused
worldview and is not caused from Theory of Mind or Empathy deficits. This feature
partially overlaps ASD due to 20% of autistic Child and Young persons (CYP) passing
a Theory of Mind test [7]. Additional overlapping traits include Delayed Speech
Development, Neurological Involvement and Passive Early History. Autistic persons
often have poor coordination. Delayed speech development is common in ASD [1; 8],
42
features
can exist in
individuals
other than
ASD - ie
they are
transdiagn
ostic
features
(although
he does not
quite go
into them).
My
opinion is
that if the
author
sticks to
the
argument
that PDA
is beyond
the
diagnosis
of ASD ie
it can exist
with in and
outside
ASD and
hence is
not a
subgroup
of ASD
then this is
a useful
and helpful
article.
being a diagnostic trait of Autistic Disorder in the DSM-IV [9]. The DSM-5 added
Sensory issues to ASD and this overlaps one PDA article that conceptualises PDA as
neurodevelopmental in nature [4]. There are important clinical differences between
PDA and autism. PDA has more RRBIs than autism as much or most of PDA
behaviours are obsessive in nature [1]. These are anxiety based due to high anxiety
being its central impairment [10; 11; 12]; however, Newson’s work occasionally refers
to panic and fear, but her article does not mention anxiety [1]. Anxiety is a recognised
co-occurring problem to autism [12; 13; 14]. PDA has superficial similarities with
ASD.”
And
“Some of the features associated with this trait do not directly assess deficits in
pride/shame/ social identity, for example panic attacks indicate a person is highly
distressed.”
I will add another section detailing how PDA features overlap autism and other
conditions, if requested by the editor?
6
But he is at
the same
time trying
Please see comments to the points about PDA being a valid diagnosis and how the
reviewer is not reflecting O’Nions and others recent opinion on PDA, in my response
to the reviewer’s first comment.
43
to
demonstrat
e that PDA
is a valid
diagnosis
then there
is no way
near
enough
arguments
here to
support
that
conclusion
and the
scope of
that goes
well
beyond
commentar
y on
O'nions
and the
length of
this. So if
the author
edits out
the
statements
of PDA
being a
separate
diagnosis
and keeps
to
argument
that it is
not a
subgroup
of ASD
I have addressed the critique of O’Nions et al (2016) by contextualising their work in
broader PDA literature, both historically and the 4 main schools of thought on PDA’s
medical ontology. I am clear that the axiology and methodology adopted by O’Nions et
al (2016) is inappropriate when fully contextualised in historic PDA literature. Please
see my response to the first reviewer comment for more information.
I have also changed the title of the submission to reflect it is no longer a commentary
article:
“Is Pathological Demand Avoidance a “meaningful subgroup” of autism?”
44
only then I
feel it is
publishabl
e and also
perhaps
make the
title
broader
than just
O'nion
commentar
y because
they have
really
expanded
on their
views from
2015-2016.
7
If these
changes
are not
possible
then this is
not
publishabl
e. The
author may
chose to
write a
much
longer
separate
article to
demonstrat
e that PDA
should be
accepted as
new
diagnostic
entity but
I have acted on the suggestion to write a longer piece, the essay is around 6500 words,
excluding references.
I repeat the point, that I think the reviewer is being harsh and a significant amount of
their comments are not valid. Thus, where I have highlighted, the reviewer’s comments
should be discarded when making an editor decision around publication.
45
this is not
possible to
do it in a
short
commentar
y.
Comments for the editor.
I have included the file for Image 1: Aggregated DSM-5 Autism Spectrum Disorder criteria and the Aggregated
PDA Profile.
I am over the page limit suggested for authors, but the submission guidelines state this is open to negotiation
with the editor. I am over the word limit to adequately cover all the topics relevant to the essay, that details how
clinical opinions on PDA have evolved over time from Elizabeth Newson’s original unpublished research. It is
clear upon engaging with Newson’s scholarship, that she did not intend for PDA to be conceptualised as an
ASD, in fact she explicitly argues against such an approach. The assumption that PDA is an ASD has had
important ramifications to PDA clinical practice and research, which I discuss in the article. I am open to certain
aspects of the article being amended upon feedback from editor’s and or reviewers. I would like submission to
accepted over the word limit. What are the editor’s thoughts?
I have referenced unpublished research due to how many are cited and often they are cited. This literature forms
a fundamental component of the essay, such as how one cannot assume PDA is an ASD from Newson’s
scholarship. It is clear Newson never made PDA conform to autism understandings, if anything she went out of
her way to make PDA not an ASD. For instance, excluding persons with PDA from her research sample, stating
PDA is not ASD and creating her own diagnostic grouping for PDA. Largely speaking these unpublished
materials have been referenced elsewhere, like in Trundle et al 2017 [12]. Additionally, the EDA-Q is based on
Newson’s unpublished research, as are the original PDA DISCO questions. Newson’s unpublished research are
an essential element to story of how the four main PDA schools of thought developed. It is appropriate for me
to fully reference this literature.
I have the version of the O’Nions and Happé unvalidated semi-structured interview that was used by the
Elizabeth Newson Centre, I have not obtained permission to re-publish it from the ENC. I think I need their
permission to do so, as they made changes to tool by adding scoring rules and diagnostic descriptions to the 22
questions. I can send a copy of this tool to the editor, if requested?
46
Since I submitted the original essay, I have started a PhD at London South Bank University and so I have
updated my author details. London South Bank University has a deal with Springer to publish articles open
access. If the submission is accepted for publication, I would like to exercise this option to publish it open
access. How would I be able to do this?
The journal has permission to publish the address provided in the updated first author details.
The submission “Is Pathological Demand Avoidance a “meaningful subgroup” of autism” is a robust critique of
O’Nions et al (2016) research. Overall, I acted on the reviewer’s comments where appropriate and I have
substantially improved the submission. Nonetheless there are a few suggestions by the reviewer that simply
nonsense and so I cannot implement.
Thank you for your time and I look forward to receiving your reply.
Yours faithfully.
Mr. Richard Woods.
47
13th of February 2021.
Dear.
Please see my formal rebuttal to the reviewer’s second round peer review comments.
Table 1: Reviewer comments and author’s response.
Num
ber.
Reviewe
r
commen
t.
Author’s Response.
1
A
Reviewer
has now
comment
ed on
your
work;
however,
the
comment
s were
sent to
the
Editor
only,
because
some of
the
comment
s might
allow
you as
I have submitted a subject access request under UK law and EU data
management guidelines. Considering the nature of some of the reviewer’s
comments, it is appropriate for the journal to inform of the reviewer’s identity
irrespective of the subject access request.
Comment:
“however, the comments were sent to the Editor only, because some of the
comments might allow you as the Author to identify the Reviewer.”
I would argue supports another comment by the reviewer: “It is clear the
author has very good knowledge of PDA and related issues”. As it the
reviewer seems aware that my knowledge of the literature can potentially
identify them, due to my very good knowledge of PDA.
48
the
Author to
identify
the
Reviewer
.
From the
lengthy
comment
I
received
I can
include
the
followin
g without
comprom
ising the
Reviewer
:
2
The
author is
clearly
passionat
e about
his view
albeit
there is
an
equally
passionat
e
argument
against
First, I will point out the positives of the reviewer’s comments:
“The author is clearly passionate about his view”
The reviewer acknowledges my passion on the topic.
And
“albeit there is an equally passionate argument against the diagnosis of PDA
as a separate condition (perhaps 2 head-to-head articles in a special issue
written by invitation may be better).”
49
the
diagnosis
of PDA
as a
separate
condition
(perhaps
2 head-
to-head
articles
in a
special
issue
written
by
invitation
may be
better).
The risks
of
propagati
ng the
validity
of PDA
as a
seperate
condition
(without
empirical
evidence
) is that
there is a
risk of
harm
coming
to
The part I draw your attention to is the part, where the reviewer acknowledges
that it is suitable for the journal to publish an article on the topic of PDA as a
standalone diagnosis.
I would point out this quote from the first round of peer review by the
reviewer:
“The author may chose to write a much longer separate article to demonstrate
that PDA should be accepted as new diagnostic entity but this is not possible
to do it in a short commentary.”
I did exactly as the reviewer requested in the first round of peer review, now
the reviewer is suggesting such an article should be published by multiple
other authors. This seems like gatekeeping to me, just because there are
“equally passionate” arguments against my view, I do not see how that
matters. The “other” side of this debate is supported by various autism
charities, caregiver advocacy groups etc, that side of the argument already
receives sufficient coverage anyway. For example, see the PDA Society:
https://www.pdasociety.org.uk/
Simply because there are equally passionate sides, does not mean that both
sides are equally valid, or equally strong, or even if that the other side should
be platformed. In a later comment the reviewer acknowledges the strength of
perspective stating “"challenging whether PDA should just be seen as a
subcategory of ASD as to a behavioural profile that can be seen in children
who do not ASD". There are strong arguments for this”. Can the reviewer
claim the other side is as comparably strong as my own position?
The logical extension of PDA being seen in non-autistic persons is that PDA
should be diagnosed as a standalone entity. What are the other alternatives?
We do not diagnose and thus do not often support such non-autistic persons
with PDA? Or we diagnose such non-autistic persons with PDA, with ASD +
PDA traits dual diagnosis? I think both these alternative options are more
controversial than diagnosing PDA as a standalone construct. I would mention
this quote by leading PDA advocate Phil Christie on the topic:
50
children
and
families;
if they
feel this
is a
complete
ly novel /
different
condition
then they
seek
different
treatment
s for the
very
challengi
ng
behaviou
rs in the
from
PDA
specific
strategies
, which
tend to
work in
the short
term but
cause
huge
problems
in the
long
term.
“… both ICD and DSM focus more on the reliability than the validity of the
disorders they describe…no iteration of either DSM or ICD has acknowledged
the fundamental distinction between researchers and practioners…who uses
diagnostic classifications and for what purpose?” (Christie, 2016, p19).
While I dislike the above quote, it is applicable to this debate as it basically
means stakeholders can diagnose any mental disorder construct in any persons,
if they think it will help the individual. I dislike the quote, as it is basically
being used to justify diagnosing PDA in autistic persons as it is meant to be
help some autistic persons; thus, disregards autistic perspectives that we do not
want autism to subdivided (See, Kapp and Ne’eman, 2019):
https://researchportal.port.ac.uk/portal/files/16798548/Lobbying_Autism_s_Di
agnostic_Revision_Chapter_13.pdf
Now this part of the reviewer’s comment:
“condition (perhaps 2 head-to-head articles in a special issue written by
invitation may be better).”
I do not see how this relevant or appropriate. ECAP has a letter section. This
submission was originally around a 1000-word letter essay, and I expanded it
to its current size on the suggestion of the reviewer. The point is that it the
typical practice in these matters is that my submission would be published then
others, like the reviewer could challenge it with a letter article. Presumably,
the chief editor who made the decision is aware of the standard option.
Another important point is that I am leading PDA expert (the reviewer later
acknowledges my expertise), I teach PDA at postgraduate level, have authored
many pieces and spoken, both nationally and internationally on the topic.
Surely, my own expertise is sufficient to warrant this piece published.
It is for these reasons that it seems to be gatekeeping to suggest that this
submission is not published.
This comment by reviewer:
51
“The risks of propagating the validity of PDA as a seperate condition (without
empirical evidence) is that there is a risk of harm coming to children and
families; if they feel this is a completely novel / different condition then they
seek different treatments for the very challenging behaviours in the from PDA
specific strategies, which tend to work in the short term but cause huge
problems in the long term.”
Where is the evidence for this being potentially harmful from the reviewer?
This part of the comment: “The risks of propagating the validity of PDA as a
seperate condition (without empirical evidence)”. First point there obviously is
some form of empirical evidence to support it, as by the reviewer’s own
admission there is a strong case that PDA is seen in non-autistic persons, to
quote them; “"challenging whether PDA should just be seen as a subcategory
of ASD as to a behavioural profile that can be seen in children who do not
ASD". There are strong arguments for this”.
I would also add there is limited empirical evidence to support this PDA being
seen in non-autistic persons, as I state in this article, and various PDA experts
are stating PDA is seen inside and outside of autism:
“In addition some argue PDA is also found in non-autistic people and is not
confined 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 out in my initial
article (Woods, 2019b).).” (Woods, 2020, p74). From:
https://www.researchgate.net/publication/339240845_Pathological_Demand_
Avoidance_and_the_DSM-5_a_rebuttal_to_Judy_Eaton
And:
“Pathological (or extreme) demand avoidance is a term sometimes applied to
complex behaviours in children within—
or beyond—autism spectrum disorder.” (Green et al, 2018a, p445).
The simple counter argument, to if there is a lack of evidence that PDA is seen
in non-autistic persons, then surely, we need to gather research from clinical
52
based populations from diagnosing PDA as a standalone entity?
If the reviewer is that genuinely concerned about PDA being lacking evidence
for it being a distinct thing (as PDA still awaits direct empirical evidence),
then surely the reviewer would also be advocating for PDA to not be
diagnosed at all, even for autistic persons?
This appears to be an example of the reviewer being harsh and talking
nonsense again.
I would point out that PDA was originally diagnosed as a standalone
diagnosis, and has been diagnosed as a standalone diagnosis in substantial
numbers as I point out in the submission:
“Historically, PDA was diagnosed as a standalone diagnostic entity. The
following literature establishes PDA can be diagnosed independent of autism:
(1) The at least 150 cases in Newson’s and colleague’s research [1]; (2)
Around 100 of 375 caregiver reported PDA diagnoses of large scale 2018
survey in the UK [30]; (3) The EDA-Q validation study, contained 50
diagnosed CYP with PDA, it is unknown if any these individuals had an autism
diagnosis [5]. As this research was conducted before widespread adoption of
dual “ASD + PDA Traits” diagnosis, many of the 50 participants are unlikely
to have an autism diagnosis; (4) Four out of 22 individuals with PDA in a
medium scale research into CYP with PDA educational experiences had a solo
PDA diagnosis [6]; (5) At least 9 PDA case studies have PDA diagnosed as a
standalone entity [12; 39; 49; 50; 51; 52]; (6) The Elizabeth Newson Centre
diagnosed PDA as a separate condition until 2015, using the unvalidated semi
structured interview created by Liz O’Nions and Francesca Happé . It is
possible to diagnose PDA independently of autism in-line with Newson et al
wishes [1].”
As I set out in the submission, PDA should still be diagnosed as a standalone
construct.
I would contest that persons with PDA should be receiving appropriate
irrespective of a PDA diagnosis or not. Especially in the UK as the Special
53
Educational Needs and Disability systems is needs based. Furthermore, that
strategies/ approaches are issues/ symptoms specific, not diagnoses specific.
To quote Green et al (2018b):
“We make clear in our paper that interventions of the kind that O’Nions and
colleagues advocate are already widely used in the autism field, independent
of any pathological demand avoidance label.” From:
https://linkinghub.elsevier.com/retrieve/pii/S2352464218302219
I set out how comparable approaches are widespread in mental health and
SEND practice here:
“DAP strategies in wider discourses
A list of DAP strategies can be found in the Autism
Education Trust’s resources (Woods, 2019b):
A specific keyworker to build a trusted relationship
Being flexible and adaptable
Indirect praise
Letting things go
Negotiating by providing choices to pupils
Positive relations
Thinking aloud
Tone of voice
Treating anger as communication
Use humour
Use of role play, novelty and variety of lesson material
Visual communication methods
Green et al (2018b) suggested a review of treatments or autism may be
beneficial. Accordingly, I provide a
current list of comparable approaches and pedagogies to DAP strategies:
Autism catatonia strategies (Eaton 2017)
Autistic preferred approaches (Laurent 2019; Milton 2018)
Capabilities approach (Woods, 2019b)
Dialectical Behaviour Therapy (Eaton, 2017; Eaton, 2018a; Fieldman, 2018)
Evidence based practices (Green et al 2018b)
Inquiries based learning
Low Arousal Approach (McDonnell, 2019)
54
SPELL – Structure, Positive (approaches and expectations), Empathy, Low
Arousal and Links Framework developed by the NAS (Milton 2017)
Universal Design for Learning (Woods, 2019b)
Eaton has noticed the similarities between Borderline Personality Disorder
(BPD) and DAP, noting those individuals diagnosed with both constructs
display demand avoidance or escape behaviours (Eaton, 2017). Subsequently,
she used BPD’s strategies of Dialectical Behaviour Therapy (DBT) with her
DAPer’s and says it can be effective (Eaton, 2017; Eaton, 2018a). The current
approach to DAP nosology is that it has strategies that are different to non
DAPers; this is an atypical nosology (Green et al, 2018b). Following the logic
for DAP nosology through, due to its strategies overlapping those for
catatonia and BPD, DAP can be seen as either a form of catatonia or
personality disorder. I will next explore how DAP strategies are generic good
practice.
It is often mentioned that DAPers do not benefit from routines, compared to
autistic persons. However, a more thorough investigation of the literature
contradicts this. Elizabeth Newson noted in her research that 60 per cent of
DAPers adhered to routines (Newson and Le Merechal, 1998). Moreover,
recent resource books state DAPers can benefit from routines the DAPers
themselves choose (Dura-Vila and Levi, 2018; Fidler and Christie, 2018). For
general autism strategies, the
SPELL Framework is comparable to DAP strategies; for instance, the
structure aspect is about removing structures that are barriers to inclusion, for
instance removing any routines that increase autistic persons’ stress (anxiety).
Structures that promote autonomy should be included (Milton 2017). One can
conclude that both DAPers and individuals with autism gain from routines of
their choosing.
Autistic authors argue that DAP approaches are suitable for many persons
(Milton, 2017; Woods, 2019a). Similar evidenced based strategies have been
used for years with autism independent of the DAP construct (Green et al,
2018b). In his guide to a Low Arousal Approach, Andy McDonnell describes
how around two thirds of distress behaviour (challenging behaviour) is
triggered by requests or demands by other persons and how all persons benefit
55
from having a sense of control (McDonnell, 2019). This can explain why
Oralie Loong anecdotally observed that declarative language
is beneficial to all persons (Loong, 2019), depersonalising requests to appear
as not a demand. Gore and colleagues (2019) in a series of interviews with 12
autism carers found that when parents take a rigid approach, placing many
demands when an autistic person is displaying distress behaviours, this
escalates such behaviours and decreases the chance of positive
practices.
O’Hare (2019) writing on behalf of the British Psychological Society’ Division
of Educational and Child Psychology notes that simplistic and reactive
approaches are stressful to teachers and do not adequately teach children why
their behaviours should change. The latter point is essential when working
with a demographic known for experiencing social problems, such as autistic
persons and DAPers. Furthermore, O’Hare also states:
“Warm supportive relationships with adults, a sense of belonging, high
expectations, teaching social-emotional skills and autonomy are the key
‘ingredients’ to positive behaviour change for children and young people.”
(O’Hare, 2019).
This is reflective of the DAP strategies, for instance utilising humour. Autistic
people frequently have a vibrant sense of humour (Bertilsdotter-Rosqvist,
2012). Qualitative research indicates that autistic pupils become more
‘functional’ when working with their (special/intense) interests (Wood, 2019).
Building trusting relations is an attachment disorder approach (Pearce, 2017).
Leeds City has reduced childhood obesity, partly by using an approach where
carers provide the child with a choice of food options (Boseley, 2019).
It is clear that placing any human in a position of control is probably
beneficial to them. Thus, underlying the points made by Andy McDonnell
(2019), and illustrating how the DAP strategies replicate good practice.
Additionally, this point is underlined by the Positive (Approach and
Expectations) aspect of the SPELL Framework, which mirrors the part of the
Special educational needs and disability (SEND) Code of Practice, where
SEND persons are to be encouraged to reach
56
their potential and to be independent. This is a deciding factor in why some
view DAP as a redundant clinical construct (Green et al, 2018b). An
additional diagnostic label that exists to access approaches that replicate good
practice requires substantial ethical justification.” (Woods, 2019, pages 34 -
36).
https://www.researchgate.net/publication/337146735_Demand_avoidance_phe
nomena_circularity_integrity_and_validity_-
a_commentary_on_the_2018_National_Autistic_Society_PDA_Conference
How exactly is the reviewer’s above comment relevant to this submission, or
even valid?
3
The topic
of the
article is
"challeng
ing
whether
PDA
should
just be
seen as a
subcateg
ory of
ASD as
to a
behaviou
ral
profile
that can
be seen
in
children
who do
not
ASD".
There are
I will restate the positive aspect of the reviewer’s comment:
“"challenging whether PDA should just be seen as a subcategory of ASD as to
a behavioural profile that can be seen in children who do not ASD". There are
strong arguments for this”
This is supported by this comment from first round of peer review “The author
does have some valid and interesting point such as PDA is not equal to ASD
and vice-versa”
This comment by the reviewer:
“The topic of the article is "challenging whether PDA should just be seen as a
subcategory of ASD as to a behavioural profile that can be seen in children
who do not ASD". There are strong arguments for this”
I would argue that this shows that the reviewer is again not properly engaging
with the submission. The topic of the article is how should be seen, when
compared to its historic literature and evidence base. I explain the four main
schools of thought on PDA, how developed, and their respective cases. I then
finally argue for PDA to be viewed as a standalone diagnosis, on the
reviewer’s first round of peer review advise. Again, to quote it: “The author
may chose to write a much longer separate article to demonstrate that PDA
should be accepted as new diagnostic entity” It is because I acted on this
57
strong
argument
s for this
but the
article
goes
beyond
this
discussio
n and
argues
that PDA
is a stand
alone /
distinct
diagnosis
. I had
suggeste
d at the
first
review
that it
was best
to stick
to the
topic
only i.e.
describin
g that
PDA
type
behaviou
rs are
overlappi
ng /
transdiag
advise is why I discuss PDA as a standalone diagnosis. Which then makes the
below comment by the reviewer seem absurd and harsh:
“but the article goes beyond this discussion and argues that PDA is a stand
alone / distinct diagnosis. I had suggested at the first review that it was best to
stick to the topic only i.e. describing that PDA type behaviours are
overlapping / transdiagnostic and not just ASD specific.”
I will restate the response to the suggestion of describing the overlap of PDA
with other conditions, from the revisions cover letter:
“Please see comments to the points about PDA being a valid diagnosis in my
response to the reviewer’s first comment.
I simply do not have room to go into full clinical details about how PDA
overlaps autism and other conditions in the essay I have written. It is already
over the page limit suggested for authors. I will add another section detailing
how PDA features overlap autism and other conditions, if requested by the
editor?
I will add, I do briefly discuss how PDA overlaps other conditions, including
autism throughout the essay. Examples include:
“PDA has limited social communication problems and Restricted and
Repetitive Behaviours and Interests (RRBIs). PDA Surface Sociability
frequently has a confused worldview and is not caused from Theory of Mind or
Empathy deficits. This feature partially overlaps ASD due to 20% of autistic
Child and Young persons (CYP) passing a Theory of Mind test [7]. Additional
overlapping traits include Delayed Speech Development, Neurological
Involvement and Passive Early History. Autistic persons often have poor
coordination. Delayed speech development is common in ASD [1; 8], being a
diagnostic trait of Autistic Disorder in the DSM-IV [9]. The DSM-5 added
Sensory issues to ASD and this overlaps one PDA article that conceptualises
PDA as neurodevelopmental in nature [4]. There are important clinical
differences between PDA and autism. PDA has more RRBIs than autism as
much or most of PDA behaviours are obsessive in nature [1]. These are
58
nostic
and not
just ASD
specific.
anxiety based due to high anxiety being its central impairment [10; 11; 12];
however, Newson’s work occasionally refers to panic and fear, but her article
does not mention anxiety [1]. Anxiety is a recognised co-occurring problem to
autism [12; 13; 14]. PDA has superficial similarities with ASD.”
And
“Some of the features associated with this trait do not directly assess deficits
in pride/shame/ social identity, for example panic attacks indicate a person is
highly distressed.”
I will add another section detailing how PDA features overlap autism and
other conditions, if requested by the editor?”
While I do not have room to copy and paste over the entire revised submission,
the point here is that I do discuss the clinical overlap between PDA and other
constructs throughout the submission, there is simply no dedicated section to
this, which I offered to write if the editor requested it.
The point the reviewer makes about me discussing PDA as a standalone
diagnosis, is because the reviewer invited me to write a larger submission on
it, in the first-round peer review, so it is an unfair critique, and thus should be
ignored.
I will restate my point from the revisions cover letter, that the reviewer has not
properly engaged with the submission, and their comments are being harsh.
4
The
author
has
addresse
d some
of the
comment
s but
where he
disagrees
This comment by the reviewer:
“The author has addressed some of the comments but where he disagrees, he
has simply made comments about reviewers such as "the reviewer is not
familiar with O'nions work".”
This is factually inaccurate, as I set show above in my response in the
Response Number three, I gave full reasons as to why I disagreed with the
reviewer. Another example from the first-round peer review, reviewer
comment:
59
, he has
simply
made
comment
s about
reviewer
s such as
"the
reviewer
is not
familiar
with
O'nions
work".
The
Reviewer
continues
to
extensive
ly
elaborate
on
his/her
past
personal
contacts
with
O'nion.
Without
doubt I
as the
Editor
find the
respectiv
e section
“Interestingly in other countries such as USA or Canada PDA is not even
discussed as such - but it is a UK issue. So the range of references author has
selected are biased towards proving his point.”
My response in the revisions cover letter:
“I have referenced and drawn upon the work on non-UK based authors where
relevant. Including Falk 2019 [26] and 2 articles from Christopher Gillberg.
The problem is that PDA is mainly centred in the UK and its literature
acknowledges this. Subsequently, there is very little non-UK literature to
reference. There are 2 articles from Northern Europe which are not available
in English except for in Google translate, but I have not referenced these due
to possible errors in translation.
The reviewer is being harsh with these comments.”
To provide quotes from the literature, where it is acknowledged that PDA is a
UK based entity:
“Since interest in the concept of PDA largely centres on the UK, it is at present
a culture-bound concept” From O’Nions et al (2019), here:
https://link.springer.com/article/10.1007/s10803-019-04219-2
And:
“construct has achieved increasingly wide attention, particularly in the UK
(but also in some parts of continental Europe), because of advocacy work done
by the Pathological Demand Avoidance Society, recognition by the National
Autistic Society, research publications, and dissemination in social media.”
(Green et al, 2018, p455).
Based on the reviewer’s previous comments in the first round of peer review
about Green et al:
“Furthermore the larger body of experts from the UK who have written a
major opinion on this do not consider PDA as a syndrome or disorder
60
absolutel
y
convinci
ng. The
Reviewer
is
definitely
familiar
with
O'nions
work.
(including Prof Jonathan Green, Emily Siminoff, Gillian Baird, Ann Le
Couteur and others - Ref: Green J, Absoud M, Grahame V, et al. Pathological
Demand Avoidance: symptoms but not a syndrome. Lancet Child Adolesc
Health. 2018;2(6):455-464. doi:10.1016/S2352-4642(18)30044-0) and the
author has not referenced this work or point from it - this article argues that
PDA is not a separate syndrome but a phenotype presentation.”
And the later comment in this round of peer review about being a colleague of
O’Nions, the reviewer is almost certainly aware that PDA is a UK based
construct, especially as they probably have co-authored articles with O’Nions;
that they are making an unrealistic request of me to discuss PDA in non-UK
countries.
I can give other examples of how I responded to the reviewer’s comments,
justifying why the reviewer’s comments were harsh to me, which feed into my
response to the next part of the reviewer’s comments.
This comment by the reviewer:
“The Reviewer continues to extensively elaborate on his/her past personal
contacts with O'nion. Without doubt I as the Editor find the respective section
absolutely convincing. The Reviewer is definitely familiar with O'nions work.”
Just co-working with O’Nions is substantive evidence that the O’Nions has
changed their opinion on PDA. It is merely the reviewer’s word. Considering
the reviewer is a colleague of O’Nions, there appears to be a conflict of
interest in the reviewer, conducting peer review of this submission.
Considering how O’Nions has consistently viewed PDA as a form of autism, it
is reasonable to infer that the reviewer also views PDA as a form of autism. In
which case ECAP should have the revision reviewed by someone less partisan.
These are comments since 2018, where O’Nions views PDA as a form of
autism, or should only be viewed as part of the autistic population:
“Some individuals appear more reactive to routine demands (e.g., to wash or
get dressed), and others to demands in socially challenging or novel situations
(e.g., when visiting friends) (Chowdhury et al. 2016). The former ‘demand-
61
specific’ profile resembles accounts of extreme/‘pathological’ demand
avoidance (‘PDA’), which describe avoidance of and reactivity to routine
demands in children with ASD (Newson et al. 2003). Some accounts of PDA
explicitly attribute these behaviours to elevated anxiety and distress in the
context of demands (Newson et al. 2003). In contrast, the latter ‘socially
inflexible’ profile, may particularly reflect intolerance of uncertainty: the
tendency to “react negatively on an emotional, cognitive, and behavioural
level to uncertain situations and events” (Buhr and Dugas 2009, p. 216),
which characterizes some children with ASD (Boulter et al. 2014; Larson
2006)”. (O’Nions et al, 2019, pages 386-387). From here:
https://link.springer.com/article/10.1007/s10803-019-04219-2
And:
“We argue that using the PDA profile, or describing relevant behaviours, as
part of a clinical formulation can be helpful in alerting caregivers and
educational professionals to particular challenges surrounding compliance
with everyday requests in some children with ASD.” (O’Nions and Eaton,
2020). From here:
https://doi.org/10.1016/j.paed.2020.09.002
Other places, where O’Nions has viewed PDA as an ASD include:
“Their apparently intact awareness of how to ‘push people’s buttons’ suggests
a level of social insight that is unusual in children with ASD.” (O’Nions et al,
2014, p758).
And:
“These data were used to determine which of the 17 PDA-relevant DISCO
items were not widely endorsed in general in an autism spectrum sample, since
features typical of ASD in general are unlikely to be useful in identifying a
meaningful subgroup.” (O’Nions et al, 2016a, p410).
Bear in mind even the reviewer acknowledged that O’Nions et al, 2016 were
attempting to make PDA a meaningful subgroup, to quote from the first round
of peer review: “O'Nions et al did suggest in 2015 that PDA "could be" seen
as a sub-group with in ASD”. That the research approach adopted by O’Nions
and others, which potentially includes the reviewer, was to:
62
“It should be noted that, so far, we have approached this profile from the
starting point of our expertise in ASD.” (O’Nions et al, 2016b, side 2), from:
http://repository.tavistockandportman.ac.uk/2165/
The point I am making here is that O’Nions has consistently viewed PDA as a
form of autism over an almost a decade’s worth of scholarship. That the
reviewer, has probably co-authored at least one, if not many of such pieces in
which O’Nions did express the view PDA is an ASD.
It does appear that the either the reviewer is mistaken, and/ or the editor is also
mistaken on the topic. That these parts of the reviewer’s comments should be
discarded. It does raise the question are the reviewer, and/ or the editor are
being entirely truthful?
5
The
Reviewer
then
continues
:
Overall,
as I said
above,
the
author is
going
well
beyond
the topic
of this
article. I
am not
saying
one
should
not write
an article
I will point out the positives the reviewer made:
“It is clear the author has very good knowledge of PDA and related issues”
The reviewer acknowledges my expertise on PDA, and the knowledge of the
literature, which begs the question why the editor is currently not siding with
my interpretation of things?
“I am not saying one should not write an article to argue that PDA should be a
diagnosis but that should come from several prominent people writing the
article together (as it is controversial) e.g. several authors writing that as an
invited article in a PDA issue makes much more sense.”
The reviewer is acknowledging again, that ECAP can publish an article on the
topic of PDA being a separate diagnosis.
I discuss elsewhere, mainly in my response Number one, elaborating how
there is no need for such an article to be authored by many persons.
Yes, PDA is controversial. I am one of its leading advocates about why PDA is
so controversial, such as here:
63
to argue
that PDA
should be
a
diagnosis
but that
should
come
from
several
prominen
t people
writing
the
article
together
(as it is
controver
sial) e.g.
several
authors
writing
that as an
invited
article in
a PDA
issue
makes
much
more
sense. It
is clear
the
author
has very
good
https://www.researchgate.net/publication/339240845_Pathological_Demand_
Avoidance_and_the_DSM-5_a_rebuttal_to_Judy_Eaton
And here:
https://www.researchgate.net/publication/337146735_Demand_avoidance_phe
nomena_circularity_integrity_and_validity_-
a_commentary_on_the_2018_National_Autistic_Society_PDA_Conference
The submission acknowledges that PDA is controversial. Here is my response
on the topic from the revisions cover letter:
“I acknowledge that PDA being diagnosed in controversial and discuss this
throughout the article, including devoting an entire section to it, called “PDA
can be diagnosed independently of autism”. Specific comments include:
“Moreover, PDA technically cannot be diagnosed as it lacks an agreed
diagnostic profile and standardised tools”
And
“Still, if one accepts that PDA does exist and that it should be diagnosed;
logically, all persons who meet its profile have equal rights to receive a
diagnosis, support and research, irrespective of if they are autistic or not.”
The editor can read the appropriate section for more details, but I have wrote
around 1700 discussing how and why PDA should be diagnosed independently
from autism.
I have referenced both Green et al 2018a and 2018b articles. The former is
reference 3 and the latter is reference 36. I discuss their work in relation to the
four main schools of thought relating to PDA’s medical ontology.”
I would point that ECAP published allowed O’Nions et al (2016) to be
published with it pursuing the controversial perspective it is an autism
subgroup, this is despite the reviewer’s own admission on the strong case PDA
is seen in non-autistic persons: “The topic of the article is "challenging
whether PDA should just be seen as a subcategory of ASD as to a behavioural
64
knowled
ge of
PDA and
related
issues
but the
article is
long /
beyond
its scope
and too
strongly
making
argument
s
supportin
g his
view.
profile that can be seen in children who do not ASD". There are strong
arguments for this”. It seems inherently unreasonable and unfair of the
reviewer to suggest this submission should not be published, considering they
suggested I submit it in the first place; while O’Nions and others can have their
controversial and an apparently weak perspective published.
This comment of the reviewer:
“but the article is long / beyond its scope and too strongly making arguments
supporting his view.”
What exactly am I meant to do, not argue for PDA being a distinct entity? If I
did that it would undermine the central premise of the submission that should
have always been viewed as a separate entity since 1980.
Surely, if the argument is made so strong, as the reviewer implies, then that is
a reason for the submission to be diagnosed.
The simple response to this point of the reviewer is in the revisions cover
letter:
“I am over the page limit suggested for authors, but the submission guidelines
state this is open to negotiation with the editor. I am over the word limit to
adequately cover all the topics relevant to the essay, that details how clinical
opinions on PDA have evolved over time from Elizabeth Newson’s original
unpublished research. It is clear upon engaging with Newson’s scholarship,
that she did not intend for PDA to be conceptualised as an ASD, in fact she
explicitly argues against such an approach. The assumption that PDA is an
ASD has had important ramifications to PDA clinical practice and research,
which I discuss in the article. I am open to certain aspects of the article being
amended upon feedback from editor’s and or reviewers. I would like
submission to accepted over the word limit. What are the editor’s thoughts?”
I will state this, as with the first round of peer review, the reviewer is being
harsh, and much of their comments should be ignored when deciding to
publish this submission.
Concluding comments.
65
There are many reasons, to view the reviewer as not properly engaging with the submission, and that
they are being harsh. In places the reviewer is contradicting themselves. The reviewer making
statements that are demonstrably untrue. There simple seems to be no valid reason for this submission
to be rejected.
I would point out in the very least, ECAP should find me a more balanced peer reviewer to conduct
peer review for the revisions. In my view as the reviewer:
• Did not argue against the points made in the submission.
• Acknowledged my passion on the topic.
• Acknowledged my expertise on PDA.
• The strength of the case that PDA is seen in non-autistic persons.
• That something on this topic can be published in ECAP.
And the other factors I mention in my rebuttal to the reviewer in Table 1, such as my own background
on PDA; that this submission should be accepted for publication in ECAP.
I due to all these factors, I have set a deadline of the Friday the 26th of February 2021, for this
submission to be accepted for publication in ECAP. If this has not been done by that date, my intent is
submitting a complaint into the deciding editor’s institution. Later, when I have the peer reviewer’s
name, a complaint against them in their institution. I will also publish this submission in Autism
Policy and Practice, along with the required anonymised documents to substantiate my perspectives,
such as peer reviews, cover letters, original submission, and the table containing the evidence there is
an agenda to get PDA recognised as part of the autism spectrum.
Thank you for your time and I look forward to receiving your reply.
Yours faithfully.
Mr Richard Woods.
66