Conference PaperPDF Available

Demand-Avoidance Phenomena (“Pathological”/ “Extreme” Demand Avoidance): As a biopower identity?

Authors:

Abstract

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
DAP as a biopower identity. 19th of October 2021. 1
Demand-Avoidance Phenomena (“Pathological”/
Extreme” Demand Avoidance): As a biopower identity?
Mr. Richard Woods.
London South Bank University PhD Student.
19th of October 2021.
DAP as a biopower identity. 19th of October 2021. 2
IN THE BEGINNING.
Introduction.
1) DAP Profile of ASD” outlook & present situation in UK.
2) DAP Profile of ASD” challengers & lack of consensus.
3) Broader research & practice standards.
4) DAP Profile of ASD” overlooked theoretical issues.
5) How DAP debate has been controlled by some.
6) How “DAP Profile of ASD” is used to control various persons.
DAP as a biopower identity. 19th of October 2021. 3
PROFILING MYSELF.
My perspective.
1) Is autistic.
2) Meets Newson’s DAP profile, is not emotionally attached to it.
3) Reflect upon how their values shape their understanding and
construction of autistic people.” (Botha 2021, p1).
4) Agenda is for at least inclusive good quality scientific-method
based research & practice.
5) Favours a transdiagnostic approach & we should be aspiring to
stop utilising Disorder based constructs in the future.
6) PhD is investigating DAP & part of CADS at LSBU.
DAP as a biopower identity. 19th of October 2021. 4
PROFILING MYSELF.
My perspective.
1) A PhD aim:
To investigate potential cultural impact of the outlook “DAP
Profile of ASD” has upon DAP literature and the public.
2) CAS definition:
The ‘criticality’ comes from investigating power dynamics
that operate in Discourses around autism, questioning deficit-
based definitions of autism, and being willing to consider the
ways in which biology and culture intersect to produce
‘disability’.” (Waltz 2014, p1337).
DAP as a biopower identity. 19th of October 2021. 5
PROFILING MYSELF.
Conflicts of interest.
1) Developing various DAP tools, e.g., Pathological Demand-
Avoidance-Beliefs Scale (PDA-BS).
2) Income from delivering training sessions on DAP.
3) Is part of LSBU CADS.
4) Reluctantly advocates for it to be diagnosed as a standalone
construct.
DAP as a biopower identity. 19th of October 2021. 6
PROFILING MYSELF.
Broader literature.
1) This builds on a previous talk at delivered in the 2018 PARC
conference (Woods 2018).
2) Most will be familiar with how right-wing media controls public
by making persons angry/ scared, thus highly aroused & thusly
thinking emotively on a topic (O’Brien 2018).
3) Similar processes for autism by making persons scared of
autism, removing opportunities for a normal life. Offering
promises to fix autistic persons to give families a normal life
(McGuire 2016).
DAP as a biopower identity. 19th of October 2021. 7
PROFILING MYSELF.
Broader literature.
1) What is in literature makes into broader culture (Botha 2021).
2) Autism is often associated with males.
3) Such as clinician’s bias can be a barrier to identifying autistic
females (Lockwood-Estrin et al 2020).
DAP as a biopower identity. 19th of October 2021. 8
PROFILING MYSELF.
Broader literature.
1) once a diagnosis takes hold and serves as the hub around
which so much wealth, so many people, and activities
coalesce, it takes on a life of its own as an authentic,
naturalized classification (Hacking 2000). This category, in
turn, provides an incentive for manufacturing people with the
diagnosis of autism whose presence and needs support this
financial infrastructure.(Grinker 2020, p9).
DAP as a biopower identity. 19th of October 2021. 9
LET’S TALK.
Main DAP Discourse.
1) Called “Pathological Demand Avoidance” or “Extreme Demand
Avoidance”.
2) Originally a Pervasive Developmental Disorder.
3) A rare autism profile/ subgroup/ subtype.
4) Has unique strategies that are different to autism.
DAP as a biopower identity. 19th of October 2021. 10
TIME TO PROFILE YOU.
Autism (left) + DAP Traits (right), my view (Woods 2021c, p11).
DAP as a biopower identity. 19th of October 2021. 11
AVOIDING DEMANDS OF ORDINARY RESEARCH.
DAP in the UK.
1) Research DAP via their autism understandings (O’Nions et al
2016b).
2) Caregivers are highly motivated to take part in research
(O’Nions et al 2016b).
3) interest in the concept of PDA largely centres on the UK, it is
at present a culture-bound concept” (O’Nions et al 2020,
p398).
4) UK DAP interest has risen sharply over last 10 years & it way
outstrips its research base (O’Nions & Eaton 2021).
5) Due to campaigning efforts persons can be on the look-out for
DAP & is a potential source of bias (Woods 2020a).
DAP as a biopower identity. 19th of October 2021. 12
AVOIDING DEMANDS OF ORDINARY RESEARCH.
Should there be a bubble on “DAP Profile of ASD? NO!
1) DAP Profile of ASD” proponents likely argue it should be a
globally accepted construct.
2) DAP is controversial (Falk 2020; Fidler & Christie 2019; Green
et al 2018b; O’Nions et al 2014a; O’Nions et al 2014b).
3) Independent reputable parties recently concluded no good
quality evidence to suggest what DAP is, or what features are
associated with it. Divergent opinion was treated equally
(Howlin et al 2021; Kildahl et al 2021; NICE 2021c).
DAP as a biopower identity. 19th of October 2021. 13
AVOIDING DEMANDS OF ORDINARY RESEARCH.
Robust challenges & substantial divergent opinion both exist.
1) Robustly challenged for almost 2 decades (Garralda 2003;
Green et al 2018a; Green et al 2018b; Green 2020; Malik &
Baird 2018; McElroy 2016; Milton 2017; Moore 2020; Wing 2002;
Wing & Gould 2002; Woods 2017a; Woods 2019; Woods 2020a;
Woods 2021c).
2) Three other prominent schools of thought:
- Common mental disorder.
- Rebranded autism.
- Symptoms from interaction between autism & co occurring
conditions (Woods 2021c).
DAP as a biopower identity. 19th of October 2021. 14
TIME TO PROFILE YOU.
Different DAP diagnostic thresholds (Woods 2021a).
DAP as a biopower identity. 19th of October 2021. 15
AN OLD ROLEPLAY.
Should there be a bubble on “DAP Profile of ASD? NO!
1) Studies DAP is seen outside of autism (Absoud 2019; Eaton
2018; Egan et al 2019; Flackhill et al 2017; Newson et al 2003;
O’Nions et al 2014a; O’Nions et al 2014b; O’Nions et al 2015;
O’Nions et al 2016a; Reilly et al 2014).
2) Studies probably contain non-autistic persons (Stuart et al
2020; Trundle et al 2017).
3) Experts DAP is seen outside of autism (Green et al 2018a;
Woods 2020b).
4) Some may disagree with this interpretation of the literature.
DAP as a biopower identity. 19th of October 2021. 16
AVOIDING VARIANCE.
When does DAP become “Pathological Demand-Avoidance”?
1) DAP presents as a continuum in human population.
2) Fluid & transient over lifespan & diverse situations.
3) "the disturbance causes clinically significant distress or
impairment in social, occupational, or other important areas
of functioning.(APA 2013, p21).
4) …start to display avoidant behaviour and challenging
behaviour in response to a particular stressor…(Eaton 2018,
p20).
5) Around EDA-Q threshold and/ orproblematic demand
avoidance” (O’Nions et al 2018b).
DAP as a biopower identity. 19th of October 2021. 17
AVOIDING DEMANDS OF ORDINARY RESEARCH.
DAP strategies are applicable for non-autistic persons with DAP.
1) Praise, reward, reproof, and punishment ineffective;
behavioural approaches fail.
2) Teachers need great variety of strategies, not rule based:
novelty helps.
3) Indirect instruction helps.” (Newson et al 2003, p597).
4) In the absence of any agreed standardised diagnostic criteria
for PDA, the principle of ‘best interests’ is applied, from
Article 3 of the Convention on the Rights of the Child
(Summerhill & Collett 2018, p30).
DAP as a biopower identity. 19th of October 2021. 18
AVOIDING DEMANDS OF ORDINARY RESEARCH.
DAP strategies & DAP clinical need debates.
1) Reinforcement-based approaches may remove CYP only coping
mechanism to aversive environments (O’Nions & Eaton 2021).
2) DAP diagnosis needed to protect CYP from caregiver
interventions for disruptive behaviour disorders (O’Nions &
Neons 2018).
3) Non-autistic with DAP have same rights to diagnoses,
research & support.
4) Only protects minority of autistic persons from ABA/ PBS, who
should also be protected due to RRBIs fulfilling similar function.
DAP as a biopower identity. 19th of October 2021. 19
AVOIDING DEMANDS OF ORDINARY RESEARCH.
Professional standards applicable to DAP debate.
1) Matters as under ethical & professional guidelines, like HCPC:
- Not discriminate & challenge discrimination.
- You must give service users and carers the information they
want or need.
- You must make sure that any promotional activities you are
involved in are accurate and are not likely to mislead.
- Must declare issues that might create conflicts of interest and
make sure that they do not influence your judgement (HCPC
2016).
DAP as a biopower identity. 19th of October 2021. 20
AVOIDING DEMANDS OF ORDINARY RESEARCH.
Professional standards applicable to DAP debate.
1) Ethically balanced & accurate information should be provided
(Waltz 2007).
2) Researchers should be attempting to falsify their hypotheses,
not conducting research which intrinsically favours one outlook
over another, research should be neutral to multiple
possibilities (Woods 2019).
DAP as a biopower identity. 19th of October 2021. 21
AVOIDING DEMANDS OF ORDINARY RESEARCH.
Broader issues in autism studies.
1) Autistic persons are systemically poorly treated by society
(Botha 2021; Woods 2017b).
2) Much/ most autism research & practice is poor quality
(Bottema-Beutel et al 2021a; Bottema-Beutel et al 2021b;
Bottema-Beutel & Crowley 2021; Dawson & Fletcher-Watson
2021a).
3) Poor quality research is often associated with poor quality
ethics (Dawson & Fletcher-Watson 2021b; Waltz 2007).
DAP as a biopower identity. 19th of October 2021. 22
AVOIDING DEMANDS OF ORDINARY RESEARCH.
Broader issues in autism studies.
1) A theory-to-research-to-practice gap (Chown 2015).
2) General lack of good quality theories (e.g., see Bottema-
Boutel et al 2019).
3) Pathologising theories often are poor quality, with weak
evidence & their associated interventions often lack efficacy
(Botha 2021).
4) A lack of inclusive research (Chown 2019).
5) Some are striving to improve autism research & practice
standards (Fletcher-Watson et al 2021).
DAP as a biopower identity. 19th of October 2021. 23
FOREVER BLOWING BUBBLES.
Topics DAP Profile of ASD” proponents tend to ignore.
1) DAP Profile of ASD” has formed a community of practice
(Woods 2019).
2) Generally, DAP Profile of ASD” supporters ignore A LOT of
topics in order to portray their view.
3) Generally, not referencing or portraying divergent outlooks on
the topic in their scholarship, e.g., Christie & O’Nions have
never referenced Garralda (2003) in print.
4) Not contextualizing DAP in debates around subtyping autism, or
utility of Disorders, should we be moving to transdiagnostic
approach to mapping features associated with Disorders?
DAP as a biopower identity. 19th of October 2021. 24
FOREVER BLOWING BUBBLES.
Newson’s views are not considered if DAP should be an ASD.
1) Ignoring Newson’s constructs of DAP & Pervasive Developmental
Disorders do not equate to accepted diagnostic norms.
2) Clinically DSM-4 Autism Spectrum is relatively the same as the
DSM-5.
3) Newson did not base DAP on Triad of Impairment.
4) Newson’s Autism Spectrum is narrower than DSM-4 (Newson et
al 2003), & knew about later since early 1980s (Frith 1991).
5) Newson’s Pervasive Developmental Disorders do not require
RRBIs to be present (Newson et al 2003).
DAP as a biopower identity. 19th of October 2021. 25
FOREVER BLOWING BUBBLES.
Newson’s views are not considered if DAP should be an ASD.
1) Newson’s Pervasive Developmental Disorders are broader &
includes non-autistic persons, compared to DSM-4.
2) Newson’s PDD-NOS is broader & includes non-autistic persons,
compared to DSM-4.
3) Excluded those who displayed autism features.
4) Said it would be a mistake to view DAP as an ASD.
5) DAP needs to be substantially different than Autism Spectrum
(Newson et al 2003).
6) I explain reasons behind these points in Woods (2021c).
DAP as a biopower identity. 19th of October 2021. 26
SPIKY PROFILE.
How accepted constructs may relate to DAP(O’Nions 2013,
p93).
DAP as a biopower identity. 19th of October 2021. 27
SPIKY PROFILE.
DAP & its constituent components (Woods 2021c, p12).
DAP as a biopower identity. 19th of October 2021. 28
A STRESSFUL SITUATION.
Anxiety based negative reinforcement cycle (O’Nions & Eaton
2021, p414).
DAP as a biopower identity. 19th of October 2021. 29
A STRESSFUL SITUATION.
Demand Management Cycle.
DAP as a biopower identity. 19th of October 2021. 30
FOREVER BLOWING BUBBLES.
So why is DAP a “culture-bound conceptto the UK?
1) DAP cannot be more than a constituent component e.g., A + B +
C ≠ A. Fact that DAP contains features not associated with
autism means it cannot be an ASD.
2) Widely accepted anxiety is not an autism feature, but a co-
occurring difficulty (APA 2013; Fletcher-Watson & Happé 2019 ;
Gould & Ashton-Smith 2011; Woods 2020a).
DAP as a biopower identity. 19th of October 2021. 31
FOREVER BLOWING BUBBLES.
So why is DAP a “culture-bound conceptto the UK?
1) Example:
While such excuses did, at times feel comical, it was always
important to remember these were children whose anxiety
appeared to be driving their need to be avoidant.” Eaton &
Weaver (2020, p35).
2) Disregards DSM-5 & NICE guidelines view anxiety as co-
occurring condition to autism (APA 2013; NICE 2021a; NICE
2021b).
3) DAP Profile of ASD” unlikely conforms to DSM-5 or NICE.
DAP as a biopower identity. 19th of October 2021. 32
OF PEAK INTEREST.
Conflict of Interests
1) Conflicts of interest can be potential (i.e., benefits have not
yet occurred or are not occurring at the time of research but
could occur in the future), actual (i.e., benefits have already
occurred or are continuing to occur), or perceived (i.e., there
are no potential or actual benefits that have accrued or could
accrue to the author, but such benefits are a reasonable
perception). While the most discussed types of COIs are those
that involve direct financial transactions, they also extend to
professional or personal relationships, ideological
commitments, and religious or political views” (Bottema-
Beutel et al 2021a, p5).
DAP as a biopower identity. 19th of October 2021. 33
FOREVER BLOWING BUBBLES.
Conflict of interests and DAP Profile of ASD” proponents.
1) Generally ignoring conflicts of interest, which they must be
declaring under ethics & professional standards.
2) Example, no where does Judy Eaton declare their various COIs,
which include:
-Advocating for “DAP Profile of ASD” (Eaton et al 2018; Russell
2018).
-Creating tool favours “DAP Profile of ASD” (Eaton et al 2018).
-Involvement in project with O’Nions & Happé (Eaton 2019), &
PDA Development Group.
-Income from assessing for “DAP Profile of ASD” (Eaton &
Weaver 2020; O’Nions & Eaton 2021).
DAP as a biopower identity. 19th of October 2021. 34
FOREVER BLOWING BUBBLES.
Controlling the DAP debate in the literature.
1) Debating what DAP could be, distracts from purpose of
diagnosing DAP, as an ASD (Christie 2007; Christie et al 2012;
Fidler & Christie 2019).
2) …maintain the integrity of how the condition is understood…
(Christie 2016; Christie 2018; Christie 2019).
3) Viewing DAP as an ASD (Christie 2007; Eaton et al 2018; Gould &
Ashton-Smith 2011; O’Nions et al 2014a; O’Nions et al 2016a;
O’Nions et al 2020; O’Nions & Eaton 2021; Russell 2018; Trundle
et al 2017).
DAP as a biopower identity. 19th of October 2021. 35
FOREVER BLOWING BUBBLES.
Controlling the DAP debate in the literature.
1) Using only entirely suspected (by study’s authors) autistic
populations samples (Doyle et al 2020; Eaton & Weaver 2020;
Gillberg et al 2015; O’Nions et al 2014a; O’Nions et al 2014b;
O’Nions et al 2015; O’Nions et al 2018a; O’Nions et al 2021;
Russell 2018; Summerhill & Collett 2018).
DAP as a biopower identity. 19th of October 2021. 36
FOREVER BLOWING BUBBLES.
An implication of controlling the DAP debate in the literature.
1) DAP Profile of ASD” supporters do seem be benefitting from
controlling the debate on DAP, instances include:
PDA Society working with government due England’s 2021
Autism Strategy, despite lacking good quality evidence to
support their outlook.
One of the study authors (JE) runs a clinic known for it
awareness of the PDA profile, which receives a significant
number of referrals of young people with these difficulties.
(O’Nions & Eaton 2011, p412).
The clinic is well known for its interest and knowledge on
PDA…” (Eaton & Weaver 2020, p34).
DAP as a biopower identity. 19th of October 2021. 37
FOREVER BLOWING BUBBLES.
Controlling the DAP debate in the literature.
1) Using organisations to help boost support for “DAP Profile of
ASD”. Like, AS has supported DAP since 2007, & recognised DAP
as an ASD in 2015.
2) NAS is common autism information source in UK (Leatherland &
Chown 2015).
3) Christie is a member of PDA Development Group (PDA Society
2016).
4) Was established in 2011 has helped steer development of “DAP
Profile of ASD”, e.g., NAS online DAP information. Set agenda
who spoke at NAS’s over subscribed annual conferences.
Christie often spoke at such events.
DAP as a biopower identity. 19th of October 2021. 38
FOREVER BLOWING BUBBLES.
Controlling the DAP debate in the literature.
1) Such conferences lead to persons being on lookout for DAP
(O’Nions et al 2016a).
2) NAS has since stopped PDA Development Group from organising
it’s DAP conferences & online DAP information.
3) Christie joins various AET’s boards in 2012 (AET 2021).
4) AET republishes Christie’s 2007 article.
5) Christie co-author’s articles mentioning AET’s support for DAP
(O’Nions et al 2014a; O’Nions et al 2016a).
6) Christie is also involved in campaigning efforts for “DAP Profile
of ASD” (Russell 2018).
DAP as a biopower identity. 19th of October 2021. 39
FOREVER BLOWING BUBBLES.
Controlling the DAP debate in the literature.
1) Such involvement is not mentioned as COIs, or widely discussed
in DAP literature.
2) Presently PDA Development Group at least produces various
guides for “DAP Profile of ASD”.
3) Has representation from NAS & PDA Society (PDA Society 2021).
4) PDA Development Group members are generally not publicly
known, despite members having a COI. Undermines integrity of
DAP literature as cannot investigate their potential impact.
DAP as a biopower identity. 19th of October 2021. 40
FOREVER BLOWING BUBBLES.
DAP’s nature makes it easy for anyone to identify with it.
1) DAP has no specificity (Attwood 2018; Christie et al 2012;
Christie & Fidler 2015; Garralda 2003; Malik and Baird 2018;
Wing 2002; Wing & Gould 2002; Woods 2019).
2) Using questionnaires & lacking specific items from using
caregiver reports (Lord et al 2018).
3) DAP features overlap many accepted constructs & common
autism co-occurring conditions; it is easy for one to identity
with it, if they wish to.
4) Signs of autistic CYP & adults internalizing “DAP Profile of ASD”
discourse (Cat 2018; Finley 2019; O’Connor and McNicholas
2020; Thompson 2019).
DAP as a biopower identity. 19th of October 2021. 41
FOREVER BLOWING BUBBLES.
How “DAP Profile of ASD” controls autistic persons.
1) Recall point about how autistic persons are being systemically
poorly treated by society (Botha 2021; Woods 2017b).
2) Most of autistic persons ill-health is due to minority stress.
3) Positive experiences in autistic community can help protect
adverse impact of minority stress (Botha 2021).
4) One should expect many autistic persons to identify with DAP,
& a supportive community would form around “DAP Profile of
ASD”.
5) Likewise, that internalised ableism would occur, e.g., Sally
Cat’s defamatory petition against Damian Milton.
DAP as a biopower identity. 19th of October 2021. 42
FOREVER BLOWING BUBBLES.
How “DAP Profile of ASD” controls autism caregivers.
1) Often caregivers would request a DAP diagnosis as a proxy for
accessing better support packages (Green et al 2018b).
2) DAP Profile of ASD” diagnosis often underpins loved ones
support packages.
3) Often discovering “DAP Profile of ASD” is a lightbulb moment
for caregivers, & has high face validity, i.e., it seems to work.
4) DAP’s lack of recognition means that caregivers often need to
advocate for “DAP Profile of ASD” to be accepted locally &
nationally.
5) Likewise, to protect key “DAP Profile of ASD” proponents.
DAP as a biopower identity. 19th of October 2021. 43
FOREVER BLOWING BUBBLES.
DAP Profile of ASD” PANDA (Tirraoro 2017).
DAP as a biopower identity. 19th of October 2021. 44
FOREVER BLOWING BUBBLES.
DAP Profile of ASD” & Panda other comments.
1) Giant Pandas have similar connotations attached to them as
notions around “DAP Profile of ASD”:
- Are rare.
- Must have campaigning to support their unique needs.
- Have specific approaches which work for them
- Limited space to accommodate them, need to protect how
they are understood.
2) Reinforces certain notions around “DAP Profile of ASD”.
DAP as a biopower identity. 19th of October 2021. 45
AVOIDANCE OF DOUBT.
What I am & what I am not saying.
1) It clearly is nonsensical to view DAP as a “Profile of ASD”.
2) It is clearly severely problematic “DAP Profile of ASD” being a
culture-bound concept” to the UK, & this never should have
occurred.
3) Those identified, or diagnosed with DAP, often do have
substantial issues complying with demands. They & their
families do require appropriate support.
DAP as a biopower identity. 19th of October 2021. 46
STRATEGIC SOCIAL AVOIDANCE BEHAVIOURS.
Going forward.
1) Respect autistic persons wishes not to divide autism (Fletcher-
Watson & Happé 2019; Kapp & Ne’eman 2019).
2) DAP is not autism.
3) Non-autistic persons with DAP have equal rights to diagnoses,
research & support.
4) Systematically investigate different outlooks on DAP, such as
can DAP be viewed as an Attachment Disorder, or a Personality
Disorder (Christie 2007)?
5) Please take part in my PhD studies.
DAP as a biopower identity. 19th of October 2021. 47
ANY QUESTIONS?
The End Game.
1) Contact Details: richardwoodsautism@gmail.com
2) Twitter handle:
@Richard_Autism
3) My researchgate:
https://www.researchgate.net/profile/Richard_Woods10
4) Any questions?
DAP as a biopower identity. 19th of October 2021. 48
FIRST JOB REFERENCES.
References.
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Washington, DC, American Psychiatric Association.
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October 2021)
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research for young autistic children. Autism, 25(2), 322-335.
DAP as a biopower identity. 19th of October 2021. 49
SECOND JOB REFERENCES.
References.
1) Bottema-Beutel, K., & Crowley, S. (2021). Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis
Autism Literature. Frontiers in Psychology. DOI: https://doi.org/10.3389/fpsyg.2021.676303
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borneneuropsykologi/wp-content/uploads/sites/29/2016/04/Towards-an-Understanding...Denmark-Nov-2016.pdf
(Accessed 19 June 2021).
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