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Demand avoidance phenomena: circularity, integrity and validity -a commentary on the 2018 National Autistic Society PDA Conference

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This article explores key reasons for justifying the proto impairment of Demand Avoidance Phenomena (DAP), by investigating the integrity and validity of the construct. DAP is aggressively pushed by non-autistic stakeholders as an autism subtype, to date the circularity around DAP’s construction and operation has received little attention. We deconstruct evidence for DAP and contextualise the DAP profile in wider discourses, specifically of medical, ethics and working practices with autistic persons. Crucially, we demonstrate there is no cognitive or behavioural trait specific to DAP. Finally, we present the results of citation survey that indicate the DAP community has formed a community of practice and we discuss the implications this has on the language around the construct. The circular approach to the construct undermines efforts to research it, while providing a misleading picture of current evidence levels and wider debates. We propose that going forward the scientific method and embracing its’ conflicting nature, is the ethical manner to approach DAP.
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Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference
28 GAP,20,2, 2019
Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference
Address for
correspondence
E-mail:
richardwoodsautism@
gmail.com
Acknowledgements
The author thanks
James Donovan, Lianne
Lawrence and Dr
Damian Milton for sup-
port in the production of
this article. I am grateful
to Dr Glenys Jones for
her helpful edits and
suggestions that much
improved the piece.
Psychologist (Newson et al, 2003). She ran assessment
clinics for children thought to be autistic. Among the chil-
dren referred, she felt that some had features in common
with autism but had other features that were not.
What is Demand Avoidance Phenomena?
Demand Avoidance Phenomena (DAP), otherwise
known as Pathological Demand Avoidance (PDA) was
rst suggested in 1980 in the United Kingdom (UK)
by Professor Elizabeth Newson, a Consultant Child
Demand avoidance phenomena:
circularity, integrity and validity
– a commentary on the 2018
National Autistic Society PDA
Conference
Richard Woods, Nottingham, UK
Editorial comment
There has been much discussion and debate on Pathological Demand Avoidance (PDA)
since it was rst described by Professor Elizabeth Newson in the UK in the 1980s. Is
it part of the autism spectrum or a separate condition or can the features of PDA be
found in other developmental conditions? If PDA can be separately dened, do the
origins or underlying causes of PDA differ from other conditions and, if so, what are the
implications?
The main consensus at present is that some autistic children and adults also have PDA
and that where this is true, different strategies are needed (Christie et al, 2011). But PDA
proles have been found in people with other conditions too (Egan et al, 2019; Kaushik
et al, 2015). There are some who assert that, as yet, there is insufcient evidence to
determine the criteria for PDA and its classication.
Some autistic individuals have referred to PDA as rational demand avoidance where
demands which are perceived to be aversive or illogical are avoided. Given that many
autistic individuals show demand avoidant behaviour, there is a concern that without clear
criteria for PDA, parents and professionals alike might assume that a person has both
autism and PDA and then seek further assessment or follow recommended strategies
for PDA which might not be useful or needed. So an ethical debate on PDA is needed.
In this paper, Richard Woods, an autistic academic, presents his views on PDA or, in his
words, the Demand Avoidance Phenomena.
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I accept the case put forward that DAPers and their
carers need appropriate support (Russell, 2018).
Unpublished research indicates DAP carers have
higher anxiety levels compared to carers of autism and
Conduct Disorder (Durà-Vilà and Levi, 2018), thus DAP
carers are a vulnerable group. Ethically, researchers
should take a balanced perspective on a topic (Brooks
et al, 2014). There is little ethical justication for refer-
ring to DAP with a term that reies it, like Pathological
Demand Avoidance.
DAP behaviour profile
Over the last few years Newson’s original behaviour
prole has been joined by two new DAP proles that
have been put forward by the National Autistic Society
and the PDA Society respectively. Aggregating the cri-
teria, DAP has ten diagnostic criteria, with six essential
for a diagnosis. These are:
comfortable in role play and pretend
continues to resist and avoid ordinary
demands of life
demand avoidance can use social strategies
lability of mood and impulsive
obsessive behaviour that is often focused
on other people
surface sociability, but apparent lack of sense
of social identity, pride, or shame (Green et al
2018a; Thompson, 2019; Woods, 2019a)
The four optional traits include:
delayed speech development
neurological involvement
passive early history (Newson et al 2003)
sensory differences (Eaton et al 2018)
There is much continuing debate and controversy over
the medical nature of DAP, the dominant ontology
of DAP being an autism subtype (Woods, 2019a).
Recently, traits of DAP have been observed in the early
case studies written by Hans Asperger, who described
DAP, in short, is characterised by obsessive noncom-
pliance, distress and orid challenging and socially
inappropriate behaviour in children, adolescents and
adults (Egan et al, 2019). Some have proposed a
change in terminology from ‘pathological’ to ‘extreme’
demand avoidance. This is to reect the idea that, from
the individual’s perspective, avoidance of everyday
requests may seem appropriate and not ‘pathological’,
even though it is deemed disproportionate to others
(Gillberg, 2014). For others, the severity and extent of
the problem justies the term ‘pathological’.
Autistic authors have expressed that DAPers’ (those
identied with its prole) actions are inherently rational
from their lived experience and it should be called
Rational Demand Avoidance. This name would be
applicable to all persons diagnosed with DAP (Milton,
2017; Woods, 2019b). For example, DAPer Harry
Thompson frequently responded to dares or acted
outrageously to gain other people’s attention, as this
was the only way he could reliably predict how others
would react to him (Thompson, 2019). Such behaviour
is also seen in other diagnosed DAPers.
The extreme behaviours found in Oppositional Deant
Disorder are due to individuals attempting to maintain
social relations or social status (Stuart et al, 2019).
Moreover, individuals with Attachment Disorders may
nd negative behaviour gains more attention than
positive behaviour, and so expressing the former
reduces anxiety from their chaotic and unpredictable
worldview, so they engage in behaviours viewed
challenging by others (Pearce, 2017). One can then
view DAPers actions as belonging to either of these
two conditions.
For a myriad of reasons I transitioned to utilising DAP.
A pivotal factor is the substantial number of possible
explanations for DAP which will be discussed later in
the paper. There is no compelling empirical evidence
base to favour any proposed ontology over another
(Green et al, 2018a; Milton, 2017). Additionally, autis-
tic persons and DAPers are prone to internalising
(Eaton, 2017; Woods 2018a). DAP is promoted on
social media, mainly aimed at DAP carers (Green et
al, 2018a).
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The ontology of DAP
There is much continuing debate and controversy over
the medical nature of DAP, the dominant ontology
being an autism subtype (Woods, 2019a). In their
conclusions on a commentary paper on DAP in 2018,
Malik and Baird stated that there are many features
described in DAP which overlap with those found in
other classied mental and behavioural disorders
(Autism, Oppositional Deant Disorder, Conduct,
Anxiety/Mood Disorders) but that these may have a
different underlying basis. They maintained that more
descriptive research of traits across many disorders is
needed to clarify the criteria and distinctiveness of other
conditions, including DAP. Most, if not all, rely on sub-
jective judgements which lead to a lack of consensus
and diagnostic confusion. Agreement on constructs
such as noncompliance; demand avoidance; opposi-
tionality; social manipulation; emotional dysregulation
would be needed for this work.
Should DAP be viewed as part of the autism
spectrum?
Notable stakeholders, including those organising and
supporting the PDA conference hold this perspective,
ie parents, clinicians and charities (Green et al, 2018a).
However, as Tab le 1 highlights, DAP has numerous
competing claims for its medical ontology. Just under
three quarters (70 per cent) of autistic people have at
least one co-occurring psychiatric condition (Lai et al,
2014) and 41 per cent have multiple, additional comor-
bid conditions (Green et al, 2018a). Some disorders,
such as anxiety and depression, are prevalent in autism,
and so on the balance of probability, DAP is likely to
be among these co-occurring conditions (Green et al,
2018b). It is possible that DAP is frequently diagnosed
in autistic people because it is invariably interpreted as
a form of autism, as part of diagnostic overshadowing
(Fletcher-Watson and Happé, 2019).
A population study of DAP reported in 2015 suggests that
it may occur in one in ve of those with autism (Gillberg
et al, 2015). This prevalence rate is higher than that
observed by Elizabeth Newson and raises concerns as
to whether it is the same underlying condition being
observed (Woods, 2019a). However, this research was
conducted with an unvalidated Diagnostic Interview
some unexpected impulsive acts that were extremely
challenging for others to control (Falk, 2019; Sanchez,
2018). For example, Asperger noted of Fritz, V:
“the conduct disorders were particularly
gross when demands were made on him …
when one tried to give him something to do
or to teach something … it required great
skill to make him join some PE or work even
for a short while … it was particularly in
these situations that he would start jumping,
hitting, climbing … or some stereotyped
sing-song.” (Sanchez, 2018).
This suggests that there is no specicity to DAP. Despite
substantial debates occurring, this paper draws atten-
tion to multiple facets that are not reected in the main
DAP discourse.
Current interest in DAP in the UK
There is a growing interest in the UK in DAP, and much
lobbying by DAP supporters on social media (Green et
al, 2018). A number of professionals and parents have
also identied children who seem signicantly more
demand avoidant than autistic children and who do not
respond to the strategies usually recommended. As a
result of this increased interest, the National Autistic
Society now convenes an annual conference on the
subject. At the latest event in 2018, Phil Christie, a
Clinical Psychologist and close colleague of the late
Elizabeth Newson, and an advocate of DAP, said the
aim of the conference was:
“to build on developments, insights and
increasing recognition of PDA but maintain
the integrity of how the condition is
understood and the nature of support that is
needed by individuals.” (Christie, 2018).
The nature and understanding that Christie is referring
to above is that DAP is an autism subtype and that
DAPers require strategies different from other condi-
tions. This raises the question: is there validity or merit
to this statement?
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These studies indicate DAP has a high drop off rate in
persons meeting the clinical threshold for a diagnosis
into adulthood, between 44 to 89 per cent (Gillberg et
al, 2015; O’Nions et al, 2016). This is higher than that
found in autism. However, the studies discussed in this
paragraph have substantial limitations including being
circular in nature.
for Social and Communication Disorders (DISCO); see
O’Nions et al (2016) for the validated version. Happé and
her colleagues have explored DAP features in autism
and have identied these features also in children with
a wider range of neurodevelopmental and behaviour
problems (O’Nions et al, 2014; O’Nions et al, 2016). So
DAP features do not appear to be conned to autism.
Table 1: Demand Avoidance Phenomena: possible medical ontologies
Possible medical ontology Comorbid prevalence rates (%)
Autism Unable to source data
Autism subtype/ of form Pervasive Developmental Disorder Unable to source data
Autistic trauma Unable to source data
Female form of autism Unable to source data
Form of Attachment Disorder Unable to source data
Form of catatonia 12 –18% (Eaton, 2017)
Form of personality disorder 0 – 32% (Lai et al, 2014)
Heterogeneous Spectrum Condition Unable to source data
Symptoms of autism and Attention Decit Hyperactivity
Disorder (ADHD)
28% (Green et al 2018a)
Symptoms of autism and eating disorders 4 – 5% (Lai et al, 2014)
Symptoms of autism and anxiety 42 – 56% (Lai et al, 2014)
Symptoms of autism and anxiety disorders About 40% (Belardinelli et al, 2016;
Francisca et al, 2017)
Symptoms of autism and Depression 12 – 70% (Lai et al, 2014)
Symptoms of autism and Dyslexia Unable to source data
Symptoms of autism and Dyspraxia Unable to source data
Symptoms of Autism and Oppositional Deant Disorder (ODD) 28% (Green et al 2018a)
Symptom of Autism and Schizophrenia 0 – 6% (Chaplin 2017)
This table has been adapted from Woods (2018b), with the addition of dyslexia and dyspraxia from the National
Autistic Society webpage on DAP (National Autistic Society 2018). Jonathan Green and colleagues note that DAP
behaviours can be explained by an unrecognised learning impairment (2018b). The Gillberg et al (2015) 1 in 5
prevalence rates for DAP have not been included due to questions over their validity.
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32 GAP,20,2, 2019
of viewing that DAPers anxiety is intrinsically caused,
many think DAPers anxiety is extrinsically caused. The
opinion that DAP is entirely caused by genetic factors is
found in the DAP literature (Harvey, 2012). Rutter and
Pickles (2016) also highlight that diagnostic classica-
tion systems are not designed along biological lines
and that there is no evidence to justify adopting such an
approach. They went on to note that biomarker research
is unlikely to make any major breakthrough. Therefore,
DAP being entirely biological in nature cannot be tested
and can be viewed as pseudoscience. There is no con-
sensus on how DAP is understood (Eaton, 2017; Stuart
et al, 2019; Woods, 2019a). Subsequently, there are
numerous interpretations of how DAP is conceptualised.
The Autism Spectrum Disorder diagnosis has construct
validity (Green et al, 2018a). As a neurodiversity sup-
porter, I wish there to be good quality autism research
as recommended by Fletcher-Watson, (2019), Milton
(2017) and Waltz (2007). I contest the fact that DAP
is being diagnosed as an autism subtype. For it to be
accepted as an autism subtype, DAP requires an evi-
dence base that exceeds that Asperger syndrome’s in
both quality and quantity. Furthermore, understanding of
DAP is argued to be 30 years behind autism (Christie et
al, 2011). Autism used to be viewed as a form of schiz-
ophrenia (Loong, 2019). Long term, there is nothing to
prevent DAP’s nosology classication changing like
autism’s has done.
No consensus over DAP’s clinical profile
There are contradictions on precisely the criteria needed
for a DAP diagnosis, with three different behavioural
proles proposed (Newson et al, 2003; Eaton et al,
2018; Green et al, 2018a). At the PDA conference, many
speakers claimed that all eight criteria from Newson’s
diagnostic prole are compulsory for DAP identication.
However, since at least 2016, the developmental com-
ponents of delayed speech development, neurological
involvement and passive history have not been seen as
essential when making a DAP diagnosis (Green et al,
2018a; National Autistic Society, 2018; Sanchez, 2018).
One inuential study shows the best predictor for what
subtype a person is diagnosed with, is the clinic they
attended (Fletcher-Watson and Happé, 2019; Green et
Should DAP be regarded as a separate entity?
Describing a DAP behavioural prole is not evidence
that it exists as a separate entity (Woods, 2019a).
Various DAP behaviours might be explained using the
‘Vicious Flower’ analogy often used in treating anxiety
and depression (Moorey, 2010). The centre of the
ower contains the distressing emotion or an unhelpful
belief, and the surrounding petals are the vicious cycles
which maintain the central problem. The Vicious Flower
contains a cycle for demand avoidance as a part of
depression, including maintaining the condition (Moorey,
2010). Two studies that take an inductive approach to
DAP indicate that the construct behaviours are likely to
be caused by general psychopathy (Egan et al, 2019;
Green et al, 2018), with larger scale study indicating
many DAPers do not meet the case for autism (Kay,
2019). Therefore, providing tentative support for the view
that DAP extends beyond an autism subtype. This is not
surprising as most psychopathology conditions have a
signicant amount of overlap (Pickles and Rutter, 2016).
Some clinicians have observed that DAP is a broad
condition found in many clinical populations outside
of autism, such as Christopher Gillberg (2014). A
small scale study indicates DAP is found in those with
Conduct Disorder and ADHD (Kaushik et al, 2015). DAP
has no behavioural or cognitive trait unique to it, it has
no specicity (Christie et al, 2011; Garralda, 2003; Malik
and Baird, 2018; Wing, 2002). The pluripotential nature
of the DAP prole and the subjective symptoms means
that at present, many conditions might be identied
as DAP if one is looking for it (Woods, 2018a). It is
challenging to draw hard boundaries between DAP and
other conditions, so diagnosing DAP can easily lead to
confusion (Garralda, 2003; Green et al, 2018b).
Is DAP the result of a combination of autism and
other comorbidities?
A transactional approach has been offered to view
DAP as a mixture of autism and comorbidities (Fidler
and Christie, 2018; Green et al, 2018a; Milton, 2017).
Nonetheless, a prevailing outlook appears to be forming
among both DAP’s proponents and its critics, that it may
be an expression of autistic trauma (Eaton, 2018b; Milton,
2017), opposite to DAP originating from exclusively
biological and genetic factors (Christie, 2018). Instead
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quantitative differences were found between the three
groups (Eaton, 2018b). Demand avoidant behaviours as
measured on the EDA-Q (Extreme Demand Avoidance
Questionnaire, O’Nions et al, 2014) were found in all
three groups. The EDA-Q detected DAP behaviours in
all three groups, supported wider research of Egan et
al (2018), Green et al (2018a) and Kaushik et al (2015).
Not much at present can be taken from ndings such
as these as the clinic specialised in autism and so it
is likely that a narrower group of children would be
assessed than children seen in a generic child devel-
opment centre. For these results to carry weight they
would need to be replicated across at least several
sites and steps taken to ensure DAP diagnosis has
over 80 per cent reliability with the ADOS (Autism
Diagnostic Observation Schedule) across participating
clinics, showing construct validity that autism subtypes
currently lack (Green et al 2018a). The methodology
has numerous aws, including being circular as
DAPers were only identied if they rst matched autism
diagnostic criteria in Diagnostic and Statistical Manual
of Mental Disorders, 5th Edition (DSM5). Afterwards
potential DAPers were assessed against the original
Newson prole as this clinic only offers the Autism +
DAP Traits diagnosis. Their results can be explained
by diagnostic overshadowing (Fletcher-Watson and
Happé, 2019).
Eaton’s clinic published a DAP diagnostic prole based
on information from the PDA Society, with added notes
from their clinical observations (Eaton et al, 2018).
Nonetheless, the author has had conrmation that
Eaton and her clinic currently use a reduced Newson
DAP prole as found on the National Autistic Society’s
website. This prole lacks: delayed speech develop-
ment, passive early history and neurological involve-
ment, from Elizabeth Newson’s original prole (Green
et al, 2018a; National Autistic Society, 2018; Thompson,
2019); over the PDA Society’s prole. Eaton’s clinic
appears to have switched from utilising the full Newson
prole to its reduced version after they nished col-
lecting participants for this research. This matters as
there is no consensus on how to diagnose DAP and
the favoured relaxed behaviour prole means more
al 2018a) and autistic persons often transition between
subtypes (Wing, 2002; Wing et al, 2011; Woods, 2018a).
In addition, it is often impossible to mark the boundaries
between subtypes, with many autistic persons having
features of multiple subtypes. The challenges faced in
dividing autism subgroups is faced by all proposed sub-
types (Fletcher-Watson and Happé, 2019; Wing, 2002;
Wing et al, 2011), including DAP. Any behaviours or
traits that identify DAP as distinct from other conditions,
including non-DAPer autistics; would contradict our
current understandings of autism and indicate that DAP
is not a form of autism.
A study by Eaton and her colleagues to
explore the DAP profile in clinic referrals
Eaton and her colleagues made detailed assessments
of 351 children (aged from under 5 to over 17 years)
who were referred to their clinic over a two year period
(Eaton et al, 2018). From their data, they grouped the
children into three categories (see Tab le 2 ).
Table 2: Three diagnostic groups within the
sample referred
Diagnostic group Number Percentage
of sample
Autism 145 41
Autism and DAP 111 32
Neither Autism or DAP 95 27
Tot a l 351 100
Of the children 73 per cent were diagnosed with autism
and, of those, 43 per cent also had a DAP prole. All
those with DAP had autism and they concluded that the
children in the rst two groups had more in common
with each other than the third group. Qualitative and
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34 GAP,20,2, 2019
DAP strategies in wider discourses
A list of DAP strategies can be found in the Autism
Education Trust’s resources (Woods, 2019b):
A specic keyworker to build a trusted
relationship
Being exible 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
for autism may be benecial. Accordingly, I provide a
current list of comparable approaches and pedago-
gies 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)
SPELL – Structure, Positive (approaches and
expectations), Empathy, Low Arousal and Links
Framework developed by the NAS (Milton 2017)
Universal Design for Learning (Woods, 2019b)
persons are eligible for a DAP diagnosis than the par-
ticipants in this research. Therefore, this research lacks
external validity. Future validation studies investigating
general population and non autistic groups are required
to provide meaningful information on the construct.
Non-medical explanations of DAP
DAP is a behaviourist approach to autism (Milton, 2017).
Lorna Wing in her critique of DAP, noted that DAPers
appear to gain reward from upsetting others (2002).
O’Nions et al (2018) argue DAPers can be conditioned
into the prole by nding demands aversive, indicating
DAPers can be conditioned. The DAP strategies are
to be practised all the time (Christie et al, 2011; Fidler
and Christie, 2018; Woods 2018a); comparable to the
amount of time suggested for behaviourist interventions.
There are examples of DAPers receiving bribes and
signicant rewards after displaying demand avoidance
behaviour (Woods 2018a).
Unpublished research by Sarah Potts investigating
DAP and personality disorders, indicates there are
differences between DAP and personality disorders,
although this study appears to suffer from signicant
limitations. Applicable results from Sarah Potts’ study,
that contribute to the debate about DAPers being
conditioned into the prole include: rst, being inclined
to break rules for personal prot; secondly, that they
are motivated by material gain. Collectively, these
factors lend credence that DAPers are conditioned into
aspects of the prole.
It is acknowledged DAP can be explained by an
Interest Based Account of autism – monotropism theory
(Eaton, 2018). Nevertheless, the theory views demand
avoidance as inherently rational (Woods, 2018b). Also,
DAP behaviours can largely be explained as a result of
stigma (Woods, 2018a). Signifying, Christie’s statement
is an arbitrary line in the sand (Milton, 2017).
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GAP,20,2, 2019 35
is benecial to all persons (Loong, 2019), deperson-
alising 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 ap-
proaches are stressful to teachers and do not adequate-
ly teach children why their behaviours should change.
The latter point is essential when working with a demo-
graphic 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 reective 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 benecial to them. Thus, underlying the
points made by Andy McDonnell (2019), and illustrat-
ing 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 edu-
cational needs and disability (SEND) Code of Practice,
where SEND persons are to be encouraged to reach
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 benet 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 benet 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 suit-
able 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 benet from having a sense of
control (McDonnell, 2019). This can explain why Oralie
Loong anecdotally observed that declarative language
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36 GAP, 20,2, 2019
The results show:
the primary DAP discourse is being
challenged
key literature is being accessed thousands
of times
key literature rarely references critical
literature, except to support its case
or disagree with critique
a lack of autistic perspectives referenced
a community of practice forming
There are various reasons why these matter to practice,
particularly the implication it is a community of practice.
Firstly, the main DAP discourse lacks the evidence to
justify its claims. Community of practices form their
own ideology (Milton, 2017). For DAP’s main discourse
it is that DAP is an autism subtype with its own unique
strategies. This means the lack of supporting evidence
for their claims is not being sufciently challenged
internally within the main discourse, as DAP is reied
as Pathological Demand Avoidance. Most concerning,
are the potentially negligent assumptions forming within
the main DAP discourse; for instance, it is argued that
the DAPers’ behaviours are not caused by their parents
(Durà-Vilà, and Levi, 2018). However, there is inade-
quate evidence to justify this (Milton, 2017).
Resulting from its individual ideology, the main DAP
literature is creating its own terminology, such as ‘more
straight forward autism’ (Fidler and Christie, 2018) and
‘atypical autism’ (Durà-Vilà and Levi, 2018; Thompson,
2018). Such terms are problematic for various reasons.
‘Atypical autism’ is nonsense as we know that autism
subtypes do not hold up clinically (Sanchez, 2018);
such differences between autism subtypes are
basically subjective and do not stand up to empirical
testing. ‘More straight forward autism’ ignores the large
body of evidence indicating that autistic persons are
systematically failed by society. This is acknowledged
within DAP scholarship as all autistic pupils appear
to be struggling to access appropriate educational
support (Kay, 2019). Other examples can be found
in Woods (2017b). A signicant report by the All Party
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 justication.
DAP citation survey
A lack of debate
There are concerns over silencing divergent opinion to
the main on DAP (Woods, 2018a). Discourse maintains
that it is an autism subtype and has its own unique
strategies. Its leading proponents frequently argue
that debating DAP is a distraction from diagnosing it
(Christie, 2007; Christie et al, 2011; Fidler and Christie,
2018). Elizabeth Newson and colleagues argued
in their original paper that DAP is needed to benet
parents (2003). The ‘lightbulb moment’ is when a
person (typically a carer) has strong resonance (recog-
nition) upon initially encountering information of the DAP
prole. More recently, the lightbulb moment is a vital
justication to support the dominant discourse (Christie
et al, 2011; Fidler and Christie, 2018; Russell, 2018).
This central tenet to the main DAP discourse, that it
is required for the benet of parents, is pivotal to the
bias to maintaining the integrity of the DAP discourse.
It means that the supporters of DAP’s main discourse
appear closed to the DAP construct evolving away from
being an autism subtype (PDA Society, 2018). It must
be noted that much DAP research is coordinated by the
PDA Development Group that is headed by Phil Christie.
Researchers are required to be open minded, to avoid
research “designed to support a preconceived notion
or belief” (Chown et al, 2019, p1). Ethically, researchers
need to attempt falsication of their hypothesis as part
of the scientic method that is involved in most research
(Milton, 2016; Rutter and Pickles, 2016). Therefore, it
appears that the main DAP discourse is self validating
pseudoscience.
Citation survey results
Investigating these concerns, I conducted a citation
survey to explore whether the literature conforming to
the dominant DAP discourse is forming a community of
practice (the methodology, results and discussion are
available from the author).
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Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference
GAP,20,2, 2019 37
recognising it as an autism subtype. An ethical debate
on DAP is required to establish a consensus on how to
approach the construct.
To conclude, there is little or no validity to justify
Christie’s conference statement to maintain the domi-
nant perspective’s integrity and understanding of DAP.
Attempting to do so, in itself, could cause confusion
over the conicted nature of DAP (Garralda, 2003;
Green et al, 2018a). Future research, taking a scien-
tic, non circular method based approach to DAP is
required for DAP to meet evidence thresholds for its
acceptance. Pertinently, policy and practice require
such evidence (Fletcher-Watson and Happé, 2019).
Finally, in everyday practice, all stakeholders should
follow the recommendations of Green et al (2018a), or
treat DAP as an undened, non-autism comorbid.
Parliamentary Group on Autism shows many indicators
of quality of service are decreasing and also notes
the lack of funds available to local government (2019).
Some carers are using DAP as a proxy to access better
support strategies (Green et al, 2018b). This demand
for the construct is partly driven by austerity measures
(Woods, 2018a). Stepping into this gap in support,
some private clinics have emerged diagnosing DAP
and this is contributing to the commodication of autism
through DAP (Woods 2017a).
Within the DAP literature it acknowledges that all autistic
persons should be treated as individuals to receive
bespoke approaches (Christie, 2007). There is no one
size ts all approach to autism because there are no
straightforward autistic persons for such an approach
to be effective with. The language around the main DAP
discourse leads to sources of possible conrmation bias.
O’Nions et al (2016) note that the ongoing campaigning
can lead people to be “on the lookout” for features of
DAP. Consequently, along with omitting autistic per-
spectives, these undermine the ethical and epistemic
integrity of the main DAP literature and its supporting
research (Milton, 2017). It is worth noting that the DAP
literature base is tiny and with the current UK climate of
participatory research, there is no excuse for excluding
autistic scholarship from the DAP literature, especially if
one perceives DAP as a form of autism.
Concluding comments
This paper provides an array of provocations to stim-
ulate debate on DAP. Initially detailing how DAP has
no specicity and a large number of possible medical
explanations to the prole. Compellingly, there are a
signicant number of common autism comorbidities
which can explain the DAP through interacting with
autism. I critically engage with ongoing research from
Eaton’s clinic, indicating it lacks external validity as its
sample is not representative. I contextualise DAP strat-
egies in wider discourses, drawing attention to how
they replicate good practice found elsewhere. Finally,
I explain the key ndings from a citation survey and its
implications for the DAP debate. DAP literature needs
to be situated in wider discourses; in the process under-
lining why the circularity surrounding the DAP construct
needs to stop and so move away from the agenda of
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Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference
38 GAP, 20,2, 2019
Durà-Vilà, G and Levi, T (2018) Me and my PDA: a guide
to Pathological Demand Avoidance for young people
London: Jessica Kingsley Publishers.
Eaton, J (2017) A guide to mental health issues in girls
and young women on the autism spectrum: diagnosis,
intervention and family support London: Jessica
Kingsley Publishers.
Eaton J (2018a) PDA and mental health available from
https://network.autism.org.uk/sites/default/les/cknder/
les/PDA%20and%20mental%20health.pdf
(accessed 12 June 2019).
Eaton, J (2018b) PDA and differential diagnosis available
from https://network.autism.org.uk/sites/default/les/cknder/
les/Differential%20diagnosis%20between%20PDA%20
and%20attachment%20disorder%20-%20Dr%20Judy%20
Eaton.pdf (accessed 13 July 2019).
Eaton, J, Duncan, K and Hesketh, E (2018) Modication
of the Coventry Grid Interview (Flackhill et al, 2017) to
include the Pathological Demand Avoidant prole
Good Autism Practice, 19 (2) 12–24.
Egan, V, Linenberg, O and O’Nions, E (2019)
The measurement of adult Pathological Demand
Avoidance traits Journal of Autism and Developmental
Disorders 49 (2), 481–494.
Falk, D (2019) Non-complicit: revisiting Hans Asperger’s
career in Nazi-era Vienna Journal of Autism and
Developmental Disorders https://doi.org/10.1007/
s1080 3-019 - 03981-7.
Fidler, R and Christie, P (2018) Collaborative approaches
to learning for pupils with PDA: Strategies for education
professionals London: Jessica Kingsley Publishers.
Fieldman, R (2018) Reflections on the psychopathology
of demand rejection and avoidance available from https://
libertyofthinking.wordpress.com/2018/10/29/reections-on-
the-psychopathology-of-demand-rejection-and-avoidance/
(accessed 1 September 2019).
Fletcher Watson, S (2019) Rigorous scientific research in
a neurodiversity framework: what, why, who, when, where
and how? available from https://gshare.com/articles/
Rigorous_scientic_research_in_a_neurodiversity_
framework/7824794?fbclid=IwAR2BS5E41fj1xwvSwm6ds
WKpUTolkqf1zjtl1VKVZLq6bvAWzUSZAi1jR_s
(accessed 18 August 2019).
References
All Party Parliamentary Group on Autism (2019)
The Autism Act, 10 years on: a report from the All Party
Parliamentary Group on Autism on understanding, services
and support for autistic people and their families in
England available from ww w.autism.org.uk/get-involved/
media-centre/news/2019-09- 09-not-enough-campaign.aspx
(accessed 10 September 2019).
Belardinelli, C, Raza, M and Taneli, T (2016)
Comorbid behavioral problems and psychiatric disorders
in autism spectrum disorders Journal of Childhood
and Developmental Disorders 2 (11) 1–9.
Bertilsdotter-Rosqvist, H (2012) The politics of joking:
narratives of humour and joking among adults with
Asperger’s syndrome Disability and Society 27 (2) 235–247.
Boseley, S (2019) Leeds becomes first UK city to lower its
childhood obesity rate available from www.theguardian.com/
world/2019/may/01/leeds-becomes-rst-uk-city-to-lower-its-
childhood-obesity-rate (accessed 1 September 2019).
Brooks, R, Te Riele, K and Maguire, M (2014) Ethics
and education research London: Sage Publications.
Chaplin, E (2017) Mental health and autism, in D Milton
and N Martin, (eds) Autism and Intellectual Disability in
adults, Volume 2 (63–67) Hove: UK: Pavilion Publishing
and Media Limited.
Chown, N, Hughes, E, Leatherland, J and Davison, S
(2019) Response to Leaf et al’s critique of Kupferstein’s
nding of a possible link between applied behaviour
analysis and post-traumatic stress disorder Advances
in Autism https://doi.org/10.1108/AIA-01-2019 -00 02.
Christie, P (2007) The distinctive clinical and educational
needs of children with pathological demand avoidance
syndrome: guidelines for good practice Good Autism
Practice Journal 8 (1) 3–11.
Christie, P (2018) Towards a better understanding of
Pathological Demand Avoidance in National Autistic
Society (ed) Pathological Demand Avoidance
Conference, London: National Autistic Society.
Christie, P, Duncan, M, Fidler, R and Healey, Z (2011)
Understanding Pathological Demand Avoidance Syndrome
in children: a guide for parents, teachers and other
professionals London: Jessica Kingsley Publishers.
GAP_text_Autumn_2019.indd 38 30/10/2019 12:16
Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference
GAP,20,2, 2019 39
Lai, M, Lombardo, M and Baron-Cohen, S (2014) Autism
The Lancet 2014 (383) 896–910.
Laurent, A (2019) Letting go of control and rethinking
support for autistic individuals available from
www.youtube.com/watch?time_continue=3&v=fx3cfzlCG_Q
(accessed 31 March 2019).
Loong, O (2019) Supporting students with Pathological
Demand Avoidance Masters, City University of Seattle.
Malik, O and Baird, G (2018) Commentary: PDA - what’s
in a name? Dimensions of difculty in children reported to
have an ASD and features of extreme/Pathological Demand
Avoidance: a commentary on O’Nions et al (2018).
Child and Adolescent Mental Health 23 (4) 387–388.
McDonnell, A (2019) The reflective journey: a practitioner’s
guide to the Low Arousal Approach Alcester, UK: Studio 3.
Milton, D (2016) The ‘cure’ vs ‘acceptance’ debate
(conference speech) available from www.youtube.com/
watch?v=xkjHN4 O0zMs (accessed 29 January 2019).
Milton, D (2017) A mismatch of salience: explorations
of the nature of autism from theory to practice Hove, UK:
Pavilion Publishing and Media Limited.
Milton, D (2018) A critique of the use of Applied Behavioural
Analysis (ABA): on behalf of the Neurodiversity Manifesto
Steering Group available from https://kar.kent.ac.uk/
69268/1/Applied%20behaviour%20analysis.pdf
(accessed 1 September 2019).
Moorey, S (2010) The six cycles maintenance model:
growing a ‘vicious ower’ for depression Behavioural
and Cognitive Psychotherapy 38 (2) 173–184.
National Autistic Society (2018) What is Pathological
Demand Avoidance (PDA)? available from www.autism.org.
uk/about/what-is/pda.aspx (accessed 13 July 2019).
Newson, E and Le Merechal, K (1998) Pathological
Demand Avoidance syndrome: discriminant functions
analysis demonstrating its essential differences from
autism and Asperger’s Syndrome available from www.
autismeastmidlands.org.uk/wp-content/uploads/2016/10/
PDA-discriminant-functions-analysis.pdf (accessed 12
September 2019).
Newson, E, Le Maréchal, K and David, C (2003) Pathological
demand avoidance syndrome: a necessary distinction within
the pervasive developmental disorders Archives of Disease
in Childhood 88, 595–600.
Fletcher-Watson, S and Happé, F (2019) Autism: a new
introduction to psychological theory and current debate,
2nd Edition Abingdon-on-Thames, UK: Routledge.
Francisca, J, Van Steensel, A and Heeman, E (2017)
Anxiety levels in children with autism spectrum disorder:
a meta-analysis Journal of Child and Family Studies,
26 (7) 1753–1767.
Garralda, E (2003) Pathological demand avoidance
syndrome or psychiatric disorder? Archives of Disease
and Childhood https://adc.bmj.com/content/88/7/595.
responses#pathological-demand-avoidance-syndrome-
or-psychiatric-disorder.
Gillberg, C (2014) Commentary: PDA – public display of
affection or Pathological Demand Avoidance? – reections
on O’Nions et al (2014) Journal of Child Psychology and
Psychiatry 55 (7) 769–770.
Gillberg, C, Gillbergm C, Thomspon, Lucy, Biskupsto, R
and Billstedt, E (2015) Extreme (‘pathological’) demand
avoidance in autism: a general population study in the
Faroe Islands European Child & Adolescent
Psychiatry 24 (8), 979–984.
Gore, N, McGill, P and Hastings, R (2019) Making it
meaningful: caregiver goal selection in Positive
Behaviour Support Journal of Child and Family
Studies 28 (6), 1703–1712.
Green, J, Absoud, M, Grahame, V, Malik, O, Simonoff, E,
Le Couteur, A and Baird, G (2018) Pathological Demand
Avoidance: symptoms but not a syndrome Lancet Child
and Adolescent Health 2 (6), 455–464.
Green, J, Absoud, M, Grahame, V, et al (2018) Demand
avoidance is not necessarily deance: authors’ reply
Lancet Child and Adolescent Health 2 (9), e21.
Harvey, T (2012) The educational issues for the child
with a diagnosis of Pathological Demand Avoidance
Good Autism Practice Journal 13 (1), 9–12.
Kaushik, A, Ozsivadjian, A, Baird, G et al (2015) Extreme
Demand Avoidance: towards a dimensional approach in
children presenting with complex neurodevelopmental
disorders and avoidance of demands Paper presented
at Royal College of Psychiatrists Faculty of Child and
Adolescent Psychiatry Annual Conference, Brighton.
London: Royal College of Psychiatrists.
Kay, H (2019) Research meeting: record of meeting
held 8 of January 2019 available from https://www.
pdasociety.org.uk/blog/2019/04/research-meeting-report
(accessed 1 September 2019).
GAP_text_Autumn_2019.indd 39 30/10/2019 12:16
Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference
40 GAP, 20,2, 2019
Waltz, M (2007) The relationship of ethics to quality: a
particular case of research in autism, International Journal
of Research and Method in Education 30 (3) 353– 361.
Wing, L (2002) The autistic spectrum: a guide for parents
and professionals London: Constable and Robinson Limited.
Wing, L, Gould, J and Gillberg, C (2011) Autism spectrum
disorders in the DSM-V: Better or worse than the DSM-IV?
Research in Developmental Disabilities 32 (2011) 768–773.
Wood, R (2019) Autism, intense interests and support
in school: from wasted efforts to shared understandings
Educational Review DOI: 10.1080/00131911.2019.1566213.
Woods, R (2017a) Pathological demand avoidance:
my thoughts on looping effects and commodication
of autism Disability and Society 32 (5) 753–758.
Woods, R (2017b) Exploring how the social model of
disability can be reinvigorated for autism: in response to
Jonathan Levitt Disability and Society 32 (7) 1090–1095.
Woods, R (2018a) Rational (Pathological) Demand
Avoidance: what it is not, what it could be and
what it does available from www.researchgate.net/
publication/325181432_Rational_Pathological_Demand_
Avoidance_what_it_is_not_what_it_could_be_what_it_does
(accessed 15 August 2019).
Woods, R (2018b) An interest based account (monotropism
theory) explanation of anxiety in autism and a Demand
Avoidance Phenomenon discussion available from www.
researchgate.net/publication/329001126_An_Interest_
Based_Account_Monotropism_theory_explanation_of_
anxiety_in_Autism_a_Demand_Avoidance_Phenomenon_
discussion (accessed 13 July 2019).
Woods, R (2019a) Pathological Demand Avoidance (PDA),
In F Volkmar (ed) Encyclopedia of Autism Spectrum
Disorders New York: Springer Nature.
Woods, R (2019b) Pathological Demand Avoidance:
is it time to move beyond the pathological need to not to
develop more inclusive pedagogical practices? Au to nom y,
the Critical Journal of Interdisciplinary Autism Studies 1 (6)
www.larry-arnold.net/Autonomy/index.php/autonomy/article/
view/CO3/html.
O’Hare, D (2019) Educational psychologists concerned
about government proposals that will marginalise, exclude
and harm vulnerable children available from www.bps.
org.uk/blogs/daniel-ohare/educational-psychologists-
concerned-about-government-proposals-will-marginalise?f
bclid=IwAR2MBkQ2JEdYxOJuTvCJzVl1R2_RF965FKitjjiT7-
IGBSdC2RIQuKmJ_qQ (accessed 1 September 2019).
O’Nions, E, Christie, P, Gould, J et al (2014a) Development
of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q):
preliminary observations on a trait measure for Pathological
Demand Avoidance Journal of Child Psychology and
Psychiatry 55 (7) 758–768.
O’Nions, E, Gould, J, Christie, P et al (2016) Identifying
features of ‘pathological demand avoidance’ using the
Diagnostic Interview for Social and Communication
Disorders (DISCO) European Child & Adolescent
Psychiatry 25 (4) 407–419.
O’Nions, E, Happé, F, Viding, E et al (2018)
Correspondence: demand avoidance is not necessarily
deance The Lancet Child & Adolescent Health 2 (7) e14.
PDA Society (2018) Phil Christie – PDA… the story so far
(conference talk summary) available from www.pdasociety.
org.uk/resources/pda-society-conference-2018/phil-christie-
-pda-the-story-so-far (accessed 19 August 2019).
Pearce, C (2017) A short introduction to attachment and
attachment disorder, second edition London: Jessica
Kingsley Publishers.
Russell, S (2018) Being misunderstood: experiences
of the Pathological Demand Avoidance Profile of ASD
available from www.pdasociety.org.uk/resources/research-
summary/2018-survey (accessed 13 July 2019).
Rutter, M and Pickles, A (2016) Annual Research Review:
threats to the validity of child psychiatry and psychology
Journal of Child Psychology and Psychiatry 57 (3) 398–416.
Sanchez, S (2018) PDA and parenting: a critical-insider
perspective on PDA and parenting available from https://
autisticmotherland.com/tag/pda/ (accessed 13 July 2019).
Stuart, L, Grahame, V, Honey, E, and Freeston, M (2019)
Intolerance of uncertainty and anxiety as explanatory
frameworks for extreme demand avoidance in children
and adolescents Child and Adolescent Mental Health
on l inel ibr a r y.wi l ey.co m /doi / abs / 10.1111/c a m h.12 3 3 6 .
Thompson, T (2019) The PDA paradox: the highs and lows of
my life on a little known part of the autism spectrum London:
Jessica Kingsley Publishers.
GAP_text_Autumn_2019.indd 40 30/10/2019 12:16
... Persons with EDA are thought to have higher social fluency, engage in role play, and utilise socially strategic manipulative behaviour. Alternatively, as Woods (2019) argues, perhaps EDA is best described as a behaviour profile that can be seen across a variety of conditions (such as, potentially, conduct disorder and ADHD); or perhaps it can be attributed to (a combination of) already recognised conditions (Green et al., 2018). ...
... O'Nions & Eaton, 2020). Indeed, some argue that demand avoidance may be described as a rational method of avoiding anxiety, especially for those with limited autonomy, such as children (Moore, 2020;Woods, 2019). Demand avoidance behaviours could be described as learned coping Extreme demand avoidance (EDA; also referred to as pathological demand avoidance, or PDA) is characterised by extreme resistance to everyday demands or requests. ...
Article
Full-text available
Autism and anxiety are thought to be related to extreme demand avoidance (EDA), which is characterised by intense avoidance of everyday demands. However, the relative importance of autism and anxiety to EDA has yet to be investigated, and little is known about EDA in adulthood. We conducted two online survey studies (Ns = 267 and 549) with adults in the general population to establish the relative importance of autistic traits and anxiety as predictors of demand avoidance, using dominance analysis. Both autistic traits and anxiety were unique and equally important predictors of demand avoidance. These findings suggest EDA is linked to autism and are consistent with the theory that demand avoidance behaviours are potentially anxiety-driven in adults.
... 1) Highly circular, & prematurely forming a community of practice around "DAP is an ASD" narrative. It is unethical & unscientific to conduct research which favours one outlook over another (Woods 2019a AVOIDING VARIANCE. ...
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Full-text available
Presently, in the United Kingdom, Demand-Avoidance Phenomena (DAP, sometimes called “Pathological Demand Avoidance”) is simultaneously gaining significant interest and controversy. Its leading proponents assert that DAP is one of the autism spectrum disorders, despite the lack of consensus and evidence to indicate what it is, and how to view DAP. Consequently, there is much debate over how to conceptualise DAP, with divergent outlooks for DAP pathologising features not typically included in an autism diagnosis, to DAP being a magpie disorder containing features from many accepted diagnostic entities. This talk we discuss its four main schools of thought, and they each evolved. Finally, focusing on how DAP can be conceptualised as a standalone diagnosis, and can be modelled as a generic stress management process. These are the slides delivered to a talk to Children and Technology Lab: University of Sussex on the 18th of November 2021. The talk is intended to provide an overview on how PDA might be conceptualised by those studying PDA. Potential discussion topics further resources. What the academic literature says about Newson et al (2003):� https://rationaldemandavoidance.com/2020/10/17/what-the-literature-and-richard-woods-say-about-newson-et-al-2003/ Why we should ignore Phil Christie's views DAP is an Autism Spectrum Disorder video:� https://www.youtube.com/watch?v=GSIdMzDMC-w Comprehensive overview to DAP & its broader debates seminar:� https://www.youtube.com/watch?v=22ESXsCnisM How “DAP Profile of ASD” is used to control autism stakeholders video:� https://www.youtube.com/watch?v=Ulc3eIG3og8
... Thus, Milton (2013) argues that demand avoidant behaviour must be understood as rational behaviour from the viewpoint of the autistic person when faced with situations perceived as highly stressful. Woods (2019) suggests referring to PDA as 'demand avoidance phenomena', while Gillberg (2014) has proposed replacing the term 'pathological' with 'extreme'. Other clinicians have criticised the concept of PDA as an over-simplistic approach to understand the complex behaviours, leading to a lack of focus on potential contextual (especially social) and transactional factors (Green et al., 2018). ...
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Lay abstract: Requests for diagnoses of pathological demand avoidance have increased over recent years, but pathological demand avoidance remains a controversial issue. The concept of pathological demand avoidance has been criticised for undermining the self-advocacy of autistic people and neglecting the potential role of anxiety as a possible underlying or contributing cause. The current study was undertaken to summarise and review the methodological quality and findings from current research into pathological demand avoidance in children and adolescents. Further aims were to describe how pathological demand avoidance has been identified and to explore the relationships with autism and other developmental and psychiatric disorders. After a comprehensive search, 13 relevant studies using a wide range of methods were identified and systematic quality assessments were undertaken. All the studies had based the identification of pathological demand avoidance, directly or indirectly, on descriptions from the original study by Newson and colleagues. However, the methods used to develop these criteria were not clearly described. Most studies relied exclusively on parental report for data, and there was a general failure to take account of alternative explanations for the behaviours under study. No studies explored the views of individuals with pathological demand avoidance themselves. Problems concerning definition and measurement in the reviewed studies currently limit any conclusions regarding the uniformity or stability of the behaviours described, or the characteristics of individuals displaying them. Relationships between pathological demand avoidance and other emotional and behavioural difficulties should be explored in future research, as should the perspectives of individuals with pathological demand avoidance themselves.
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Over the last decade or so, Pathological Demand-Avoidance (PDA) is often viewed as a “Profile of ASD” in the United Kingdom (UK). Despite over 20 years of substantial debate contesting the nature of PDA, and it lacking any robust evidence to suggest what PDA might be. This begs the question, why is PDA a “culture-bound concept” in the UK? Recognising all mental Disorders are socially constructed, this video examines different outlooks of PDA and how they evolved over time. Additionally, how different aspects of culture and biology intersect, to “PDA Profile of ASD” as a “culture-bound concept” to the UK. Consequently, creating a model of thirteen different themes of factors contributing to the biased hype surrounding PDA. Other Critical Autism Studies scholars can replicate. This video should be of interest to anyone critically engaging with PDA. Slides may slightly differ to those presented.
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This is a short talk introducing the topic of autism and mental health. Covering how autistic persons spikey profile often includes co-occurring difficulties, which are frequently caused by how poor practice by broader society towards autistic persons. Suggesting suitable approaches working with autistic persons, including viewing them as being fully human. Briefly outlining the speaker’s own spikey profile of strengths and difficulties, and the approach others should adopt when working with them. Concluding with calling for people to empathise with struggles many autistic persons experience. These slides are slightly different to those presented.
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Demand-Avoidance Phenomena (DAP, sometimes called “Pathological Demand Avoidance”) is a proposed mental Disorder. Currently, in the United Kingdom (UK) it is mainly viewed as a “Profile of ASD” to extent it is a “culture-bound concept”. Yet, there is little consideration if this should be the case, and more pertinently, why “DAP Profile of ASD” is a “culture-bound concept” in the UK; considering the broad acknowledgement DAP lacks good quality evidence to suggest what it is and what features are associated with it. This talk explores how DAP’s contested, unstable spikey profile intersects with cultural and societal factors to construct “DAP Profile of ASD”, and in the process how it is used to control various autism stakeholders. Particularly, vulnerable autistic persons and autism caregivers. Thus, show that proposed autism subgroups, including “DAP Profile of ASD” and "Profound Autism" are mainly about politics, and it seems unwise to view DAP as a “Profile of ASD”. There is an urgent for more balanced and accurate information to be provided to autism stakeholders, and especially vulnerable groups. This talk builds on some of our previous work on DAP. Specifically, these talks: 1) Rational (Pathological) Demand Avoidance: what it is not, what it could be & what it does. A link to it below: https://www.researchgate.net/publication/325181432_Rational_Pathological_Demand_Avoidance_what_it_is_not_what_it_could_be_what_it_does 2) Demand-Avoidance Phenomena (“Pathological”/ “Extreme” Demand Avoidance): As a biopower identity? A link to it below: https://www.researchgate.net/publication/355427579_Demand-Avoidance_Phenomena_Pathological_Extreme_Demand_Avoidance_As_a_biopower_identity
Conference Paper
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Presently in the United Kingdom (UK), the proposed Disorder, Demand-Avoidance Phenomena (DAP, sometimes called “Pathological”/ “Extreme” Demand Avoidance), is a “culture-bound concept”. DAP is mainly characterised as a high anxiety causing a person to display frequent avoidance of “ordinary” (non-autistic) demands, with the dominant outlook being it is a “Profile of ASD”. Despite this there has been little consideration within the literature for if “DAP Profile of ASD” should be a “culture-bound concept” in the UK? This conference talk breaks down various factors, including actions of prominent “DAP Profile of ASD” proponents to explain how DAP has become a “culture-bound concept” in the UK. Contextualising many different debates which are generally ignored by its proponents, and typical research and practice standards which suggest that DAP should never have been allowed to form a “culture-bound concept”. Additionally, I detail how DAP is used to control various autism stakeholders. I conclude with ways to move forward, by adopting a scientific method-based approach to research & practice for DAP, thus adhering typical research & practice standards. It was an online event held over Zoom. I have added to the material presented yesterday, to add relevant, or necessary information. One can access a recording of the talk through this link below: https://www.youtube.com/watch?v=Ulc3eIG3og8
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This is a commentary on the recent Demand-Avoidance Phenomena (DAP, sometimes called Pathological Demand Avoidance) by Kildahl et al (2021). I am supportive of the observations on the rigour of the limited evidence base for DAP; that at present no firm conclusions can be made upon what features are associated with it, and it is premature to definitively conceptualise DAP as a distinct Disorder, autism subtype, or autistic trait. Building upon these results by highlighting crucial issues with the axiology of most DAP research, which views it to be an autism spectrum disorder, and detailing some of its adverse impacts. Drawing particular attention to the limitations of the Extreme Demand Avoidance-Questionnaire, for instance, that Comfortable in role play and pretending trait does not cluster with other demand-avoidance traits. DAP research is contextualised in research excellence guidelines, stressing the importance of including non-autistic persons with DAP in its research, by conceptualising it as a discrete disorder. There is a need to investigate the potential bias in the United Kingdom “PDA is an ASD” community, and the conflicts of interest plausibly present in much DAP research. Persons with DAP and autistic persons deserve better than viewing it as an autism spectrum disorder.This is only the first draft, and it is currently awaiting suggestions from the journal’s editors before being formally submitted. Substantial amount of the draft is likely to be removed as it is over the word and reference limits for the journal. There is no guarantee that this commentary will be accepted for publishing. If it is published it should open access, as London South Bank University has a deal to publish articles open access with many Sage journals, including Autism.
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These are slides of my 15 minute talk on why PDA can be viewed as a discrete Disorder at a lower diagnostic threshold. During the talk, I did not have time to fully describe or comment on all slides to as much detail as I like. I can answer any questions about particular slides.
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Extreme demand avoidance (EDA) is increasingly described as part of the autism spectrum and is sometimes diagnosed as Pathological Demand Avoidance (PDA). Yet little is known, about the educational experiences of children with and without EDA behaviours. Using an online survey collecting both quantitative and qualitative data, 211 parents reported on the school experiences of their autistic children. 57 parents had a child with an additional diagnosis of PDA (AUT-PDA); 91 had a child with no diagnosis of PDA but, according to parent report, displayed EDA behaviours (AUT-EDA); and 63 had a child with neither a PDA diagnosis nor EDA behaviours (AUT). Results demonstrated that there were few group differences in terms of the frequency of failed school placements and exclusions. However, children in the AUT-EDA/-PDA groups had higher levels of behaviour that challenges, which were particularly high in those with a PDA diagnosis. There were no significant differences in school exclusions, but the fact that these occurred across all groups is of concern. Qualitative results suggested overwhelmingly negative school experiences for all groups but especially the AUT-EDA and AUT-PDA groups. Parents attributed such experiences to misunderstanding of their children’s diagnoses and a lack of targeted support.
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This analysis argues that social deficit theories exacerbate the worst excesses of the medical model, a framework that attributes autism (in this example) as the cause of a person's functional impairment or disability, and empowers professionals and caregivers to treat autistic people's problems. Social deficit theories of autism generally conceptualise a deficit in understanding of others or motivation to relate to others as its primary cause. Harms of the medical model heightened by these theories include dehumanisation that denies basic respect and dignity, pathologisation of neutral and positive differences, reductionism to a social disorder despite complex traits and sensorimotor underpinnings, and essentialism despite autism's fluid boundaries. Proposed solutions include a more holistic and socially embedded classification system that recognises strengths and functional differences, more inclusion of autistic people in research and society, and practical strategies to help autistic and non-autistic people understand one another.
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This is my letter to the editor (Larry Arnold) at Autonomy, the Critical Journal of Interdisciplinary Autism Studies. The article explores critique of the Autism Education Trust's Pathological Demand Avoidance resources, by contextualising them in inclusive education discourses. The article is open access can be accessed via the link below: http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/CO3/html?fbclid=IwAR33-Ng2iBgE84SV2w8sYQa4XOx0bZSAkZJBZUt9VGGa_I68KfHqejxZosI
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Autism is a polysemous concept. It is defined as a neurodevelopmental disorder that is diagnosed based on an assessment of behaviour and dysfunction. Autism also refers to a specific way of information or sensorial processing. For those diagnosed with autism, it is a real and shared experience. In this paper, I sketch the moral work that biological conceptions of autism perform. They help to conceptualize the diagnosis and associated challenges as real and they remove some of the blame from the diagnosed person and/or their parents. But such approaches also risk neglecting the role of behaviour as a meaningful reaction to experiences. In thinking about the ethics of autism research, diagnosis of autism, and autism care, the recent findings of epigenetics and systems biology may help us overcome the dichotomy between biology and psyche, and point the way to a more nuanced and ethical view. WHAT THIS PAPER ADDS: The meaning of 'autism' has different layers and as such autism is a polysemous concept. The lived experience of autistic people matters in research. © 2019 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.
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Empathy is an essential component of human social life. It requires the ability to understand another’s mental state and respond with an appropriate emotion or action. Individuals with autism spectrum disorder (ASD) have been described to exhibit atypical empathic responses which limit communication and social interactions. This review highlights the clinical characteristics and mechanisms underlying empathy in ASD by summarizing 61 peer-reviewed articles. Studies characterized empathic differences due to sex, age, intelligence, and disorder severity and provided valuable insights into the roles that genetics, neural networks, and sensory processing have in eliciting empathy. This knowledge will lead to improved diagnostics and therapies to improve social cognition, emotional recognition, and the empathic response in patients with ASD.
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Objectives Positive Behavioral Support (PBS) is considered the treatment framework of choice for children with intellectual and developmental disabilities (IDD) at risk of behavior that challenges. PBS demands stakeholder engagement, yet little research has explored goal formation in this context for caregivers of children with IDD. Methods We used Talking Mats and semi-structured interviews to support 12 caregivers of children with IDD who displayed behaviours that challenge, to develop goals for PBS. Interviews covered quality of life for caregivers and their child, adaptive and challenging aspects of child behavior, and aspects of caregiver’s own behavior. Results Caregivers were able to form individualised and meaningful goals in relation to all domains, demonstrating rich insight into personal needs and needs of their child. The process of forming goals was psychologically and emotionally complex given prior experiences and needs of participants but effectively supported by the interview method. Conclusions We conclude that goal formation in PBS requires careful consideration and structuring but has the potential to support effective working relationships and ensure assessment and intervention is aligned with the needs and aspirations of families.
Background Pathological demand avoidance (PDA) is a proposed subtype of autism spectrum disorder (ASD), characterised by extreme avoidance of demands. Demand avoidant behaviour has been proposed to be driven by an anxious need to be in control, although has never been explicitly studied. Emerging evidence suggests intolerance of uncertainty (IU) and anxiety may explain the behaviours seen in ASD. We propose these concepts may be useful starting points for furthering understanding of PDA. Methods In Study 1, quantitative methods examined the relationship between PDA, IU and anxiety using data collected in an online survey (N = 214). The sample included cases with clinically diagnosed PDA (n = 69) and those with no clinical diagnosis but parent‐identified features of PDA (n = 151). ‘Children with a diagnosis of PDA scored significantly higher on the IUS‐P (t(212) = 2.45, p < .05) compared to those without a diagnosis of PDA. PDA diagnosis did not impact on scores on any other measure.’ In Study 2, a selection of Study 1 participants (n = 11) were followed up with a telephone interview to gain descriptive data relating to PDA and its association with IU and anxiety. Results Regression analyses indicate that demand avoidant behaviour can be conceptualised in part as a possible attempt to increase certainty and predictability to alleviate increasing anxiety. Children and young people with PDA employed varying strategies to manage IU depending on the level of demand presented and degree of anxiety generated. These strategies can be represented by different features of the behaviour profile seen in PDA (control behaviour, withdrawal to fantasy, and meltdown). These behavioural features of PDA showed differential relationships with IU and anxiety, although all were predicted by IU, only meltdown demonstrated a mediation effect by anxiety. Conclusions This study represents one of the first attempts to conceptualise and understand the behavioural features of the PDA profile in children and young people. It builds upon emerging evidence from the ASD literature that IU is a relevant construct for conceptualising demand avoidant behaviour in children who show PDA behaviour. This has potential clinical implications for the assessment and management of PDA in children and young people.
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