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

Abstract

This is an updated presentation I gave to the Disability Research Forum at Sheffield Hallam University on 12th of December 2019. I have had this peer reviewed, but it was rejected mainly due to my writing style in the piece. I am planning on adapting it into a book chapter. This is a simple document analysis to conduct, please do replicate if you have a spare few hours. I would be interested if your results diverged significantly from myself. The updates to the powerpoint are mainly adding relevant material from more recent observations, especially around the diagnostic tools and proposed changes to DAP diagnostic criteria.

Abstract (from rejected paper).
The term Pathological Demand Avoidance (PDA) is increasingly associated with autistic persons, yet there is little consensus over what it means. PDA is often conceptualised as falling within the Broader Autism Phenotype (BAP). The autistic scholar Nick Chown (2019), investigating the BAP and Autistic traits constructs conducted a content analysis of their tools, to assess if any feature is specific (only located to each construct). His research suggests no characteristic is unique to either BAP or Autistic traits. I replicated Nick Chown’s study on 63 questions, drawn from the 3 validated tools for PDA. I assessed each item for if it portrays a feature that is unique to either autism or PDA, and then justified the answer. I found that no features assessed by the 63 questions are solely located in autism or PDA, instead these features are: (1); typically found in persons who are either highly distressed or the result of trauma; (2) acts any individuals utilises to assert their self-agency; (3) a minority of features are found in criminal activities. These results indicate that the notion PDA traits are an autism subtype is a reified construct and instead, PDA traits are more representative of the entire human population.

Full text

Is DAP real or mythical? 1
Is the concept of Demand Avoidance
Phenomena (Pathological Demand
Avoidance) real or mythical?
Richard Woods.
12th of December 2019.

Is DAP real or mythical? 2
PERSPECTIVE.
My Bias.
1) The speaker meets its proposed profile, but
that does not mean much.
2) Demand Avoidance Phenomena (DAP) Sceptical
that DAP is an autism subtype or a syndrome.
3) DAP can be viewed as a stand alone construct.
4) Significantly more compelling research in both
quantity and quality.

Is DAP real or mythical? 3
ICE BREAKERS.
Introduction.
1) Main DAP discourse.
2) DAP diagnostic traits & its limitations.
3) Screening/ Diagnostic tools.
4) Discussion.
5) Limitations.

Is DAP real or mythical? 4
LET’S TALK.
Main DAP Discourse.
1) Called Pathological Demand Avoidance or
Extreme Demand Avoidance.
2) A distinct syndrome with unique strategies.
3) An autism subtype/ Pervasive Developmental
Disorder.
4) DAP is controversial (Falk 2019; Fidler &
Christie 2019; Green et al 2018b; Kaushik et al
2015; O’Nions et al 2014a; O’Nions et al
2014b).
5) Dichotomy “for” & “against” sides.

Is DAP real or mythical? 5
WHAT IS IN A NAME?
A Pathological Demand for name change.
1) There is substantial debate over its name
(Woods 2019a).
2) Demand to change its name (Eaton 2018a;
Gillberg 2014; Kay 2019; Milton 2017; Newson
et al 2003; Reilly et al 2014; Sanchez 2018;
Woods 2019b).
3) Demand Avoidance Phenomena.

Is DAP real or mythical? 6
TIME TO PROFILE YOU.
Autism + DAP Traits criteria.
1) Comfortable in role play & pretend.
2) Continues to resist & avoid ordinary demands
of life.
3) Demand avoidance can use social strategies.
4) Lability of mood & impulsive.
5) Obsessive behaviour, often focused on other
people.
6) Surface sociability, but apparent lack of sense
of social identity, pride, or shame (Fidler
2019; Green et al 2018a; Thompson 2019).

Is DAP real or mythical? 7
TIME TO PROFILE YOU.
Non-essential criteria.
1) Delayed Speech Development.
2) Neurological Involvement.
3) Passive early history (Newson et al 2003).
4) Sensory differences (Eaton et al 2018).

Is DAP real or mythical? 8
TIME TO PROFILE YOU.
Profile limitations.
1) No good quality research suggesting what
diagnostic traits are compulsory or optional.
2) DAP criteria is unstable (Eaton 2018a; O’Nions
et al 2014a; 2016).
3) 4 separate profiles, see Eaton et al (2018);
Green et al (2018a); Newson et al (2003);
Woods (2019b)
4) No agreement over diagnostic criteria & are
not consistently applied.
5) No agreement on how to do diagnose DAP.

Is DAP real or mythical? 9
TIME TO PROFILE YOU.
Profile limitations.
1) DAP profile overlaps autism behaviour profile
(O’Nions et al 2018).
2) Autism dx from age 3+, as when behaviours
consistently manifests (Green 2018).
3) “Passive Early History” & Avoidant behaviours
are generic, with anecdotal evidence open to
confirmation bias.
4) Assumptions on ontology, nosology & aetiology
of DAP should avoid anecdotal evidence.

Is DAP real or mythical? 10
ROLEPLAYING AUTISM.
Main DAP Discourse.
1) DAP originally a PDD.
2) Public often called PDD nosology group
“autistic spectrum”.
3) Demand Avoidance was obsessive (Newson et
al 2003).
4) DAP is not autism but part of autism spectrum
(Christie 2007; Christie et al 2012).

Is DAP real or mythical? 11
ROLEPLAYING AUTISM.
Anxiety and autism.
1) DAP’s main impairment is high anxiety driven
demand avoidance.
2) Current autism nosology, is validity based.
3) Anxiety is a comorbid, external to autism.
4) Anxiety prevalence rate 42 –56% (Woods
2019b).
5) Anxiety disorders prevalence around 20% (Lai
et al 2019.
6) OCD prevalence around 9% (Lai et al 2019).
7) DAP being an autism subtype is a false
equivalence fallacy.

Is DAP real or mythical? 12
AN OBSESSIVE COMPULSION.
PDA Development Group Definitions.
1) “Demand avoidance had been present since
early infancy and presented across contexts
and time.” (Eaton, 2019).
2) Autistics persons transition between subtypes
(Wing 2002; Wing et al 2011).
3) Around 30% autistics develop into a different
subtype (Wodka et al 2013).
4) Definitions means autistics cannot transition
into DAP profile.

Is DAP real or mythical? 13
AN OBSESSIVE COMPULSION.
PDA Development Group Definitions.
1) “Avoidance is pervasive and often seems
illogical or perverse (e.g. the child may be
unable to eat whilst hungry).’”
2) “Avoidance is not limited to a specific
activity (or activities, e.g. school) or
activities in a specific context.” (Eaton,
2019).
3) Anxiety = Obsession.
4) Demand Avoidance = Compulsion.

Is DAP real or mythical? 14
BACK TO MODELS.
SOR Developmental Model (Howard 2017).

Is DAP real or mythical? 15
A TRAUMATIC EXPERIENCE.
Monotropism DAP Model.
1) Howard Model can be adapted for Sensory
Under Responsivity & Monotropism.
2) Crucially, this from birth.
3) Howard Model is applicable for trauma-based
developmental delays; can explain DAP.
4) Neurological differences can be from during
pregnancy.

Is DAP real or mythical? 16
A TRAUMATIC EXPERIENCE.
Not Autism.
1) Theory of Mind issues not specific to autism
(Chown 2017; Fletcher-Watson & Happé 2019).
2) RRBIs and Social Communication issues are not
specific to autism.
3) “Quasi autism” (Runswick-Cole et al 2016).
4) Attachment-based autism (Colley & Cooper
2017).
5) There is nothing to prevent DAP changing
nosology group.

Is DAP real or mythical? 17
BE SPECIFIC.
A content analysis.
1) DAP has no specificity (Attwood 2018; Christie
et al 2012; Christie & Fidler 2015; Garralda
2003; Kay 2019; Malik & Baird 2018; Wing
2002).
2) Signs of DAP seen in Asperger’s case studies
(Falk 2019; Philip & Contejean 2018; Sanchez
2018).
3) Traits applicable to many persons in
attachment/ trauma/ LAC literature & other
non-autistics.

Is DAP real or mythical? 18
THE OTHER SIDE.
Non-Specific Nature.
1) Large overlap between many of these (Rutter
& Pickles 2016).
2) Such comorbidities are being seen in recent
samples (Brede et al 2017; Eaton 2018b; Egan
et al 2019; Kaushik et al 2015; Lyle &
Leatherland 2018; Trundle et al 2017).
3) Interaction with comorbidities affects autism
development (Brede et al 2017; Flackhill et al
2017; Green et al 2018a; Verhoeff 2012).
4) Can be difficult to differentiate between
comorbids & autism.

Monotropism & DAP. 19
BE SPECIFIC.
A content analysis.
1) Nick Chown analysed BAP and autistic traits
tools for specificity (2019).
2) Suggests these 2 terms are result of word
games as they these constructs lack
specificity.
3) DAP is argued to fall under BAP (Eaton 2018a).

Monotropism & DAP. 20
BE SPECIFIC.
A content analysis.
1) Replicating Chown (2019) study with validated
DAP tools: EDA-Q; EDA-QA; 11 DISCO DAP
items.
2) RQ: “To what extent do current
research/diagnostic tools identify features
specific to DAP?”

Monotropism & DAP. 21
DOWNING TOOLS.
EDA-Q Limitations.
1) Extreme Demand Avoidance Questionnaire is a
screening tool; EDA-Q.
2) 26 item observer rated screening tool.
3) 4 point Likert Scale around likeness to child.
4) 2 threshold values; 50 for 11 years and under,
and 45 for 12 years and above.

Monotropism & DAP. 22
DOWNING TOOLS.
EDA-Q Limitations.
1) EDA-Q flaws: has a rater bias (Green et al
2018a) and divergent scores across
stakeholders (Brede et al 2017).
2) EDA-Q flaws: Detects demand avoidance
behaviours in other conditions & false
positives (Eaton 2018b; Green et al 2018a;
Kaushik 2015; O’Nions et al 2014a).
3) Unproven ability to discriminate against SEBD
(O’Nions et al 2014a).

Monotropism & DAP. 23
DOWNING TOOLS.
EDA-Q Limitations.
1) Ceiling effect, as anchor points are not very
sensitive in capturing variations at the more
extreme end (Stuart et al 2019).
2) Tool has not been standardised compared to
current diagnostic criteria, e.g no items for
assessing Sensory Differences.
3) pathologises behaviours children naturally
display when asserting their self-agency in
hard times (Moore 2020).

Monotropism & DAP. 24
DOWNING TOOLS.
Screening & diagnostic tools.
1) Extreme Demand Avoidance-Questionnaire for
Adults (EDA-QA), screening tool.
2) 26 item self rated screening tool.
3) 5 point Likert Scale.
4) Validated for general population.

Monotropism & DAP. 25
DOWNING TOOLS.
EDA-QA Limitations.
1) Allison Moore’s (2020) critique of EDA-Q
pathologising self-agency is applicable to EDA-
QA.
2) Autistic persons & DAPers are both prone to
internalising (Woods 2019b).
3) Open to confirmation from generic nature of
items and DAPers prone to internalising.

Is DAP real or mythical? 26
DOWNING TOOLS.
Diagnostic tool flaws.
1) Diagnostic Interview for Social and
Communication Disorders; DISCO.
2) Semi-structured interview schedule.
3) Clinician assesses each item based on
responses from other persons.
4) Only tested on 27 persons who met full
Newson profile, 1 was not autistic.
5) Takes 2 scores, worst case scenario & current
value for each item.

Is DAP real or mythical? 27
DOWNING TOOLS.
Diagnostic tool flaws.
1) Does not take into account fantasy & roleplay
traits (Philip & Contejean 2018).
2) Only measures 7 of 10 profile traits.
3) Untested discriminatory ability with SEMH.
4) Validated with arbitrary thresholds (O’Nions et
2016).
5) Vague & unspecific questions reliant on
caregiver reports (Lord et al 2018), open to
confirmation bias.

Is DAP real or mythical? 28
DOWNING TOOLS.
Diagnostic tools & conflicting diagnostic traits.
1) Some are trying to change descriptions of DAP
criteria to reflect it being an autism subtype.
2) E.g. “Appears sociable, but lacks
understanding” (Green et al 2018a, p3).
3) Not enough evidence to justify changes, this
study gives reasons to not use changed
diagnostic traits.
4) Proposed changes matter to how DAP is
conceptualised and treated.

Is DAP real or mythical? 29
DOWNING TOOLS.
Diagnostic tools & conflicting diagnostic traits.
1) Changed criteria do not reflect Newson’s or
Christie’s views on DAP. E.g.
2) “Surface sociability, but apparent lack of
sense of social identity, pride, or shame.”
(Newson et al 2003, p597).
3) “Lacking pride/ shame/ identity” ≠ “Lacks
Understanding”.
4) Former associated to trauma, latter to
autism.

Is DAP real or mythical? 30
DOWNING TOOLS.
Diagnostic tools & conflicting diagnostic traits.
1) EDA-Q, EDA-QA, all DAP DISCO items
(validated & not) & Newson’s unvalidated
semi-structured interview are based on
Newson’s diagnostic criteria.
2) Any research or clinical practice that uses
changed criteria, while utilising above tools;
its validity is automatically undermined.
3) Researchers & clinicians need to use Newson’s
diagnostic traits.

Is DAP real or mythical? 31
RESULTING CONSEQUENCES.
General themes.
1) Assessed each item twice if it is specific to
autism or DAP. I then gave a reason to justify
each of the 126 answers [slightly more
extensive methodology of (Chown 2019)].
2) Then loosely looked at justifications to see if
there were general groupings emerging.
3) Admittedly it has just occurred to me I could
tally up the number of answers meeting each
theme! I will do this in the published write up
(aiming to discuss it in a book chapter).

Is DAP real or mythical? 32
RESULTING CONSEQUENCES.
General themes.
1) Either associated with trauma or highly
distressed persons.
2) Actions any person would display to assert
their self-agency.
3) Small minority of items can be found in
criminal activities, such as harassment of
others.

Is DAP real or mythical? 33
RESULTING CONSEQUENCES.
First theme.
1) Either associated with trauma or highly
distressed persons. Examples:
2) “Seems as if s/he is distracted ‘from within’”
(O’Nions et al 2014, p763).
3) “Knows what to do or say to upset specific
people.” (O’Nions et al 2014, p763).
4) “(Lacks) Awareness of own identity.” (O’Nions
et al 2016, P415).
5) “I am driven by the need to be in charge.”
(Egan et al 2019, p485).

Is DAP real or mythical? 34
RESULTING CONSEQUENCES.
Second theme.
1) Actions any person would display to assert
their self-agency. Examples:
2) “I complain about illness or physical
incapacity to avoid a request or demand.”
(Egan et al 2019, p485).
3) “Attempts to negotiate better terms with
adults.” (O’Nions et al 2014, p763).
4) “Apparently manipulative behaviour.”
(O’Nions et al 2016, p415).

Is DAP real or mythical? 35
RESULTING CONSEQUENCES.
Third theme.
1) Small minority of items can be found in
criminal activities. Examples:
2) “Fantasising, lying, cheating, stealing.”
(O’Nions et al 2016, p415)
3) “Harassment of others.” (O’Nions et al 2016,
p415).
4) “I tell other people how they should behave,
but do not feel these rules apply to me.”
(Egan et al 2019, p485).

Is DAP real or mythical? 36
RESULTING CONSEQUENCES.
Clinical Populations.
1) Chown’s results suggest wider undiagnosed
autistic population (2019).
2) These results do not support this.
3) Substantial number of items are associated
with trauma based constructs.
4) Efforts to control numbers DAPers diagnosed
to maintain integrity of main discourse
(Christie 2018; Christie 2019; Summerhill &
Collett 2018).
5) Historically & presently, DAP is mainly
diagnosed in suspected autistic persons.

Is DAP real or mythical? 37
RESULTING CONSEQUENCES.
Clinical Populations.
1) Results do not support notion DAPers are an
undiagnosed autistic population.
2) Do indicate that DAPers are undiagnosed non-
autistic population.
3) EDA-Q detects demand avoidance outside of
autism (Eaton 2018b; Green et al 2018a;
Kaushik 2015; O’Nions et al 2014a).
4) This research indicates that such results are
probable identifications of DAP outside of
autism.

Is DAP real or mythical? 38
RESULTING CONSEQUENCES.
Future Directions.
1) Urgent need for good quality research into all
10 DAP criteria and tools are validated to
assess these.
2) Tentatively supports anecdotal reports DAP is
seen outside of autism (Dore 2016; Gillberg
2014; Kay 2019; McElroy 2016).
3) And emerging empirical evidence DAP is seen
in non-autistic persons (O’Nions 2013; O’Nions
et al 2016; Reilly et al 2014; Woods 2019b).

Is DAP real or mythical? 39
RESULTING CONSEQUENCES.
Future Directions.
1) Likewise, refutes notion DAP is an autism
subtype.
2) This is important as it undermines validity of
any DAP research that assumes it is a form
(subtype/ profile/ disorder) of autism.
3) Need to use Newson’s diagnostic traits.

Is DAP real or mythical? 40
AN DISTRACTION BEHAVIOUR.
Clinical & Research Implications.
1) DAP is not a form of autism; clinically and for
research purposes should be treated as such.
2) Arguments for rights to a diagnosis are equally
applicable to non-autistic DAPers.
3) Results need replication studies on future DAP
tools, that are validated.
4) Threat to self-agency means DAP needs to be
treated with caution until research establishes
a consensus over what it is.

Is DAP real or mythical? 41
A DISTRACTION BEHAVIOUR.
Limitations.
1) I am a researcher, not a clinician. Other
persons may draw divergent results.
2) There is no agreement over what DAP is.
3) 11 DISCO DAP items research is poor quality.
4) No tool measures all 10 DAP criteria.
5) Possible future research may reveal features
that are specific to DAP.
6) Generic language for DISCO; EDA-Q & EDA-QA
items predisposes dataset to support
hypothesis.

Is DAP real or mythical? 42
ROUND TABLE.
Summarising.
1) Significant disagreement over what DAP is.
2) Judy Eaton’s DAP Database has significant
limitations based on axiology & the tools used.
3) Strategies are good practice & overlap many
approaches.
4) Substantial overlap between trauma based
scholarship & DAP literature.
5) Need to use Newson’s diagnostic traits.
6) This is a simple study to conduct in a few
hours, please do replicate it for yourself.

Is DAP real or mythical? 43
POSITIVE FEEDBACK.
Acknowledgements.
1) I thank Dr Nick Chown for producing his
original content analysis of BAP and Autistic
Traits tools.

Is DAP real or mythical? 44
ANY QUESTIONS?
The End Game.
1) Contact Details:
richardwoodsautism@gmail.com
2) Twitter handle:
@Richard_Autism
3) My researchgate:
https://www.researchgate.net/profile/Richar
d_Woods10
4) Any questions?

Is DAP real or mythical? 45
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