Conference PaperPDF Available

Demand Avoidance Phenomena (“Pathological”/ “Extreme” Demand Avoidance): is it a Disorder at a lower diagnostic threshold?

Authors:

Abstract

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.
DAP at lower diagnostic thresholds rationale in 15 minutes. 1
Demand Avoidance Phenomena (“Pathological”/
Extreme” Demand Avoidance): is it a Disorder at a lower
diagnostic threshold?
Mr. Richard Woods.
London South Bank University PhD Student.
20th of July 2021.
DAP at lower diagnostic thresholds rationale in 15 minutes. 2
IN THE BEGINNING.
Introduction.
1) DAP is an ASD” outlook.
2) Four main schools of thought on DAP.
3) Autism history & DAP.
4) EDA-Q & literature.
5) Pathological Demand Avoidance”.
DAP at lower diagnostic thresholds rationale in 15 minutes. 3
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 at lower diagnostic thresholds rationale in 15 minutes. 4
LET’S TALK.
Main DAP Discourse, or not.
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) Community of practice around main discourse (Woods 2019a).
4) Should we be debating what PDA could be? Should we be
researching divergent outlooks?
DAP at lower diagnostic thresholds rationale in 15 minutes. 5
LET’S TALK.
Main DAP Discourse.
1) 4 schools of thought:
- Common mental health disorder.
- Rare autism subtype.
- Rebranded autism.
- Symptoms from interaction between autism & co occurring
conditions.
2) I have a COI due to advocating for DAP as a common disorder &
earning an income from DAP training.
DAP at lower diagnostic thresholds rationale in 15 minutes. 6
SPIKY PROFILE.
Pseudo-syndrome DAP & its constituent conditions.
DAP at lower diagnostic thresholds rationale in 15 minutes. 7
TIME TO PROFILE YOU.
DAP at lower diagnostic thresholds rationale in 15 minutes. 8
TIME TO PROFILE YOU.
Core DAP Traits.
Anxiety
-
based Restricted & Repetitive Behaviours &
Interests (RRBIs):
Universal.
Avoidance of everyday demands.
Yes
Comfortable in role play & pretence.
No
Consistent mood swings & impulsivity.
No
Frequent & intense actions.
Yes
Social avoidance behaviours.
Yes
Universality of features is based on Newson et al (2003) statistics.
DAP at lower diagnostic thresholds rationale in 15 minutes. 9
A STRESSFUL SITUATION.
How are demands avoided. (PDA Society, 2020, p7).
DAP at lower diagnostic thresholds rationale in 15 minutes. 10
A STRESSFUL SITUATION.
Demand Management Cycle.
DAP at lower diagnostic thresholds rationale in 15 minutes. 11
A NOVEL ROLEPLAY.
What does a modern Disorder look like?
1) Are heterogenous in nature, with porous boundaries.
2) Most have features overlapping with other Disorders & are
spectrum in nature.
3) May have conflicting evidence for which diagnostic groupings
best fit; e.g., ADHD & disruptive, impulse-control, & conduct
disorders, instead of neurodevelopmental disorders.
4) No longer sensible to strive for homogeneous subtypes within
Disorders (APA 2013).
5) "the disturbance causes clinically significant distress or
impairment in social, occupational, or other important areas
of functioning.(APA 2013, p21).
DAP at lower diagnostic thresholds rationale in 15 minutes. 12
AN OLD ROLEPLAY.
Autism history implications for DAP.
1) DAP history is compared to autism (Christie et al 2012).
2) Autism used to be a form of schizophrenia (Woods 2019a).
3) 1966 prevalence rates 1 in 2500, now ~ 1 in 100, can be higher.
4) Autism broadened into a spectrum (Happé & Frith 2020).
5) DSM4: PDD-NOS was the most commonly diagnosed subtype.
6) ASD Level One to Level Three (APA 2013).
7) High Functioning Autism”, equivalent to Asperger’s.
8) Now accepted indistinguishable clinical differences & strategies
between autism subtypes (Woods 2020).
9) Confirms DAP can change diagnostic groupings & may be
substantially broadened.
DAP at lower diagnostic thresholds rationale in 15 minutes. 13
A MISMATCH OF SALIENCE?
Pervasive
Developmental
Coding Disorders
(Newson 1989;
1996).
DAP at lower diagnostic thresholds rationale in 15 minutes. 14
AN OLD ROLEPLAY.
DAP’s parallels with autism history.
1) Initial researcher/ clinician stated DAP is not an ASD (Newson
et al 2003).
2) Over the course of the research I encountered children who
manifested much less marked presentations than those Newson
described, and typified a number of participants; but whose
parents or teachers identified PDA features in them.” (O’Nions
2013, p203).
3) Proposed as a common & new disorder (Gillberg 2014).
DAP at lower diagnostic thresholds rationale in 15 minutes. 15
AN OLD ROLEPLAY.
DAP’s parallels with autism history.
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 2016; 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 2018; Woods
2020).
DAP at lower diagnostic thresholds rationale in 15 minutes. 16
AVOIDING VARIANCE.
EDA-Q is important.
1) A 26-item observer rated screening tool designed for use with
autistic CYP with DAP traits (O’Nions et al 2014a).
2) Validation study contained non-autistic CYP…
3) EDA-Q threshold is not pervasive or developmental (Woods
2021).
4) Most/ much DAP clinical needs arguments applicable lower
diagnostic thresholds (Woods 2021).
5) EDA-Q commonly used in DAP diagnoses (Lyle & Leatherland
2018; Reilly et al 2014; Summerhill & Collett 2018).
DAP at lower diagnostic thresholds rationale in 15 minutes. 17
AVOIDING VARIANCE.
EDA-Q is important.
1) EDA-Q is involved in most DAP research (Bishop 2018; Brede et
al 2017; Eaton 2018; Egan et al 2019; Goodman 2018; Green et
al 2018; Langton & Frederickson 2016a; Langton & Frederickson
2016b; Lyle & Leatherland 2018; Moore 2020; O’Nions et al
2014a, O’Nions 2015; O’Nions et al 2016; O’Nions et al 2018a;
O’Nions et al 2021; Reilly et al, 2014; Stuart et al, 2020;
Tollerfield et al 2021; Truman et al 2021; Woods 2019b).
2) Unwise to substantially deviate from its threshold.
DAP at lower diagnostic thresholds rationale in 15 minutes. 18
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/ or “problematic demand
avoidance” (O’Nions et al 2018b).
DAP at lower diagnostic thresholds rationale in 15 minutes. 19
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 at lower diagnostic thresholds rationale in 15 minutes. 20
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 at lower diagnostic thresholds rationale in 15 minutes. 21
FIRST JOB REFERENCES.
References.
1) Absoud, M. (2019). Pathological Demand Avoidance: Clinic prevalence and characteristics (Conference
proceedings). Retrieved from: https://www.pdasociety.org.uk/wp-content/uploads/2019/09/Research-Meeting-
Report.pdf (Accessed 19 June 2021).
2) American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.
Washington, DC, American Psychiatric Association.
3) Bishop, E. (2018). The Relationship between Theory of Mind and Traits Associated with Autism Spectrum
Condition and Pathological Demand Avoidance Presentations. Doctorate of Clinical Psychology, University College
London.
4) Brede, J., Remington, A., Kenny, L., & Warren, K. (2017). Excluded from school: Autistic students’ experiences of
school exclusion and subsequent re-integration into school. Autism & Developmental Language Impairments,
2(1), 1-20.
5) Christie, P. (2007). The distinctive clinical and educational needs of children with pathological demand avoidance
syndrome: guidelines for good practice. Good Autism Practice, 8(1), 311.
6) Christie, P. (2016). Towards a better understanding of Pathological Demand Avoidance (Conference paper).
Retrieved from: https://www.dp.dk/decentrale-enheder/dansk-psykolog-forenings-selskab-for-
borneneuropsykologi/wp-content/uploads/sites/29/2016/04/Towards-an-Understanding...Denmark-Nov-2016.pdf
(Accessed 19 June 2021).
7) Christie, P. (2018). Towards a better understanding of Pathological Demand Avoidance. In: National Autistic
Society (Ed), Pathological Demand Avoidance Conference. London: National Autistic Society.
DAP at lower diagnostic thresholds rationale in 15 minutes. 22
SECOND JOB REFERENCES.
References.
1) Christie, P. (2019). Towards an understanding of Pathological Demand Avoidance (PDA): clinical, research and
educational perspectives. In: National Autistic Society (Ed), Pathological Demand Avoidance Conference. London:
National Autistic Society.
2) Christie, P., Duncan, M., Fidler, R., & Healey, Z. (2012). Understanding pathological demand avoidance syndrome
in children: A guide for parents, teachers and other professionals. London: Jessica Kingsley Publishers.
3) Eaton, J. (2018). PDA and differential diagnosis. In: National Autistic Society (Ed), Pathological Demand
Avoidance Conference. London: National Autistic Society.
4) Egan, V., Linenburg, O., & O’Nions, L. (2019). The Measurement of Adult Pathological Demand Avoidance Traits.
Journal of Autism and Developmental Disorders, 49(2), 481-494.
5) Fidler, R and Christie, P. (2019). Collaborative Approaches to Learning for Pupils with PDA: Strategies for
Education Professionals. London: Jessica Kingsley Publishers.
6) Flackhill, C., James, S., Soppitt, R., & Milton, K. (2017). The Coventry Grid Interview (CGI): exploring autism and
attachment difficulties. Good Autism Practice, 18(1), 62-80.
7) Fletcher-Watson, S., & Happé, F. (2019). Autism: a new introduction to psychological theory and current debate.
Abingdon: Routledge.
8) Gillberg, C. (2014). Commentary: PDA public display of affection or pathological demand avoidance?
reflections on O’Nions et al. (2014). Journal of Child Psychology and Psychiatry, 55: 769770.
9) Goodman, A. (2018). Emotion Regulation and Executive Function in Children and Adolescents with Autism
Spectrum Disorder and Pathological Demand Avoidance Traits. Doctorate of Clinical Psychology, University
College London.
DAP at lower diagnostic thresholds rationale in 15 minutes. 23
THIRD JOB REFERENCES.
References.
1) Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., & Baird, G. (2018). Pathological
Demand Avoidance: symptoms but not a syndrome. Lancet Child & Adolescent Health, 2(6), 455464.
2) Happé, F., & Frith, U. (2020). Annual Research Review: looking back to look forward changes in the concept of
autism and implications for future research. Journal of Child Psychology and Psychiatry, 61(3), 218-232.
3) Kapp, S., & Ne’eman, A. (2019). Lobbying Autism’s Diagnostic Revision in the DSM-5. In: Kapp, S. (Ed.), Autistic
Community and the Neurodiversity Movement (pp. 167-194). New York: Springer Nature.
4) Langton, E., & Frederickson, N. (2016a). Mapping the educational experiences of children with pathological
demand avoidance. Journal of Research in Special Educational Need, 16(4), 254263.
5) Langton, E., & Frederickson, N. (2016b). Parents’ experiences of professionals’ involvement for children with
extreme demand avoidance. International Journal of Developmental Disabilities, 64(1), 16-24.
6) Lyle, C., & Leatherland, H. (2018). Preventing school exclusion: a case study of a primary aged autistic child with
ADHD and a PDA profile. Good Autism Practice, 19(2), 33-42.
7) Moore, A. (2020). Pathological demand avoidance: What and who are being pathologized and in whose interests?
Global Studies of Childhood, 10(1), 39-52.
8) Newson, E. (1989). Pathological Demand Avoidance Syndrome: diagnostic criteria and relationship to autism and
other developmental coding disorders (Research report). Retrieved from:
https://www.autismeastmidlands.org.uk/wp-content/uploads/2016/10/Pathological-Demand-Avoidance-
Syndrome.pdf (Accessed 19 June 2021).
9) Newson, E. (1996). Pathological Demand Avoidance Syndrome: a statistical update (Conference paper). Retrieved
from: https://www.autismeastmidlands.org.uk/wp-content/uploads/2016/10/Pathological-Demand-Avoidance-a-
statistical-update.pdf (Accessed 19 June 2021).
DAP at lower diagnostic thresholds rationale in 15 minutes. 24
FOURTH JOB REFERENCES.
References.
1) Newson, E., Le Maréchal, K., & David, C. (2003). Pathological demand avoidance syndrome: A necessary
distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88, 595600.
2) O’Nions, E. (2013). Understanding thoughts and responding to emotions: exploring similarities and differences
between autism spectrum disorders, conduct problems with callous- unemotional traits, and pathological
demand avoidance. Doctor of Philosophy, King’s College London.
3) O’Nions, E., Christie, P., Gould, J., Viding, E., & Happé, F. (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), 758768.
4) O’Nions, E., Viding, E., Greven, C., Ronald, A., & Happé, F. (2014b). Pathological demand avoidance: Exploring
the behavioural profile. Autism, 18(5), 538-544.
5) O’Nions, E., Quinlan, E., Caceres, A., Tulip, H., Viding, E., & Happé, F. (2015). Pathological Demand Avoidance
(PDA): an examination of the behavioural features using a semi-structured interview (Unpublished research).
Retrieved from:
http://pdaresource.com/files/An%20examination%20of%20the%20behavioural%20features%20associated%20with%
20PDA%20using%20a%20semi-structured%20interview%20-%20Dr%20E%20O'Nions.pdf (Accessed 19 June 2021).
6) O'Nions, E., Gould, J., Christie, P., Gillberg, C., Viding, E., & Happé, F. (2016). Identifying features of
‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO).
European Child & Adolescent Psychiatry, 25(4), 407419.
7) O’Nions, E., Viding, E., Floyd, C., Quinlan, E., Pidgeon, C., Gould, J., & Happé, F. (2018a). Dimensions of
difficulty in children reported to have an autism spectrum diagnosis and features of extreme/‘pathological’
demand avoidance. Child and Adolescent Mental Health, 23(3), 220227.
DAP at lower diagnostic thresholds rationale in 15 minutes. 25
ARE WE THERE YET?
References.
1) O’Nions, E., Happé, F., Viding E., Gould, J., & Neons, I. (2018b). Demand avoidance is not necessarily defiance.
Lancet Child & Adolescent Health, 2(14), e14.
2) O’Nions, E., Happé, F., Viding, E., & Neons, I. (2021). Extreme Demand Avoidance in Children with Autism
Spectrum Disorder: Refinement of a Caregiver-Report Measure. Advances in Neurodevelopmental Disorders. DOI:
https://link.springer.com/article/10.1007/s41252-021-00203-z
3) PDA Society. (2021). What is PDA? A guide to the Pathological Demand Avoidance profile of autism (Online
booklet). Retrieved from: https://www.pdasociety.org.uk/wp-content/uploads/2021/04/What-is-PDA-booklet-
website-v2.1.pdf (Accessed 19 June 2021).
4) Reilly, C., Atkinson, P., Menlove, L., Gillberg, C., O’Nions, E., Happé, F., & Neville, B. (2014). Pathological
Demand Avoidance in a population-based cohort of children with epilepsy: Four case studies. Research in
Developmental Disabilities, 35: 32363244.
5) Stuart, L., Grahame, V., Honey, E., & Freeston, M. (2019). Intolerance of uncertainty and anxiety as explanatory
frameworks for extreme demand avoidance in children and adolescents. Child and Adolescent Mental Health,
25(2), 59-67.
6) Summerhill, L., & Collett, K. (2018). Developing a multi-agency assessment pathway for children and young
people thought to have a Pathological Demand Avoidance profile. Good Autism Practice, 19(2), 2532
7) Tollerfield, I., Chapman, H., & Lovell, A. (2021). Underlying Thinking Pattern Profiles Predict Parent-Reported
Distress Responses in Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. DOI:
https://link.springer.com/article/10.1007/s10803-021-05092-8
DAP at lower diagnostic thresholds rationale in 15 minutes. 26
THE LAST JOB REFERENCES.
References.
1) Truman, C., Crane, L., Howlin, P., & Pellicano, E. (2021). The educational experiences of autistic children with
and without extreme demand avoidance behaviours. International Journal of Inclusive Education. DOI:
https://doi.org/10.1080/13603116.2021.1916108
2) Trundle, G., Leam., C., Stringer, I. (2017). Differentiating between pathological demand avoidance and antisocial
personality disorder: a case study. Journal of Intellectual Disabilities and Offending Behaviour, 8(1), 13-27.
3) Woods, R. (2019a). Demand avoidance phenomena: circularity, integrity and validity A commentary on the 2018
National Autistic Society PDA Conference. Good Autism Practice, 20(2), 2840.
4) Woods, R. (2019b). Is the concept of Demand Avoidance Phenomena (Pathological Demand Avoidance) real or
mythical? (Conference paper). Retrieved from:
https://www.researchgate.net/publication/340279248_Is_the_concept_of_Demand_Avoidance_Phenomena_Path
ological_Demand_Avoidance_real_or_mythical (Accessed 19 June 2021).
5) Woods, R. (2020). Pathological Demand Avoidance and the DSM-5: a rebuttal to Judy Eaton’s response. Good
Autism Practice, 21(2), 74-76.
6) Woods, R. (2021). PDA Behaviour Intensity and Prevalence at different Diagnostic Thresholds (Online blog).
Retrieved from: https://rationaldemandavoidance.com/2021/04/25/pda-behaviour-intensity-and-prevalance-at-
different-thresholds/ (Accessed 19 June 2021).
Conference Paper
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
Article
Full-text available
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.
Presentation
Full-text available
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.
Article
Full-text available
My article "Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference." article has a response published by Dr Judy Eaton, called "A Response to Wood’s paper – Demand Avoidance Phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference." This is my rebuttal. It sets out key flaws in the stance of PDA as autism subtype & PDA would be excluded from autism if reasons used to remove subtypes from DSM5 were applied to it. I did ask for this to be peer reviewed, but the editor said that was not needed.
Article
Full-text available
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.
Chapter
Full-text available
From 2009 to 2012, the Autistic Self Advocacy Network (ASAN) advocated to influence the DSM-5’s revision of the diagnostic criteria for autism. ASAN succeeded in substantially influencing the final criteria and accompanying text. It worked to address community concerns that the apparent narrowing of diagnostic criteria might “miss” autistic people while nonetheless supporting the shift to a unified autism diagnosis. The historic activism took place through both public and private communications with the workgroup. ASAN achieved significant partial successes in protecting access to diagnosis, addressing disparities in diagnosis for marginalized groups, and blocking harmful proposals. Nonetheless, the lack of formal autistic representation within the process limited ASAN’s impact, leading to criteria that are likely still too narrow and a problematic severity scale.
Article
Full-text available
Pathological (“extreme”) demand avoidance (PDA) involves obsessively avoiding routine demands and extreme emotional variability. It is clinically linked to autism spectrum disorder (ASD). The observer-rated EDA Questionnaire (EDA-Q) for children was adapted as an adult self-report (EDA-QA), and tested in relation to personality and the short-form Autism Screening Questionnaire (ASQ). Study 1 (n = 347) found the EDA-QA reliable, univariate, and correlated with negative affect, antagonism, disinhibition, psychoticism, and ASQ scores. Study 2 (n = 191) found low agreeableness, greater Emotional Instability, and higher scores on the full ASQ predicted EDA-QA. PDA can screened for using this tool, occurs in the general population, and is associated with extremes of personality. Future studies will examine if PDA occurs in other clinical populations. Electronic supplementary material The online version of this article (10.1007/s10803-018-3722-7) contains supplementary material, which is available to authorized users.
Article
The term ‘pathological demand avoidance’ was first coined in 1983. In recent years, diagnostic tools have emerged to enable practitioners to identify, name and treat pathological demand avoidance and, at least in the United Kingdom, there is an increasing number of children who attract this label. In addition to what are defined as the core ‘deficits’ of autism, including assumed difficulties in social communication, difficulties in social interaction and restrictive interests, children with pathological demand avoidance are thought to have an extreme anxiety-driven need to control their environment and control the demands and expectations of others. This article will argue that we must exercise extreme caution in accepting the validity of pathological demand avoidance and will suggest that it can be seen as an attempt to psychiatarise autistic children’s resistance, which, in so doing, restricts their agency. First, it will draw on the arguments put forward by some autistic scholars who have claimed that pathological demand avoidance is better understood as rational demand avoidance – an understandable and rational response to the circumstances that one finds oneself in. Second, it will consider the intersection between autism and childhood. When one of the defining characteristics of pathological demand avoidance is an inability to recognise and, presumably, respect social hierarchy, children’s competencies as social actors and active meaning makers of their world can easily become pathologised as defiance. Finally, the article will address the intersections of autism, childhood and gender. Girls are much less likely to be diagnosed as having an autism spectrum condition than boys are, with a ratio traditionally estimated at approximately 1:4. However, pathological demand avoidance diagnoses are fairly evenly spread between boys and girls. It will be argued that it is girls’ resistance to the ordinary and everyday demands of her as a girl and her subsequent rejection or transgression of those expectations that is being pathologised.
Article
The concept of autism is a significant contribution from child psychiatry that has entered wider culture and public consciousness, and has evolved significantly over the last four decades. Taking a rather personal retrospective, reflecting on our own time in autism research, this review explores changes in the concept of autism and the implications of these for future research. We focus on seven major changes in how autism is thought of, operationalised, and recognised: (1) from a narrow definition to wide diagnostic criteria; (2) from a rare to a relatively common condition, although probably still under‐recognised in women; (3) from something affecting children, to a lifelong condition; (4) from something discreet and distinct, to a dimensional view; (5) from one thing to many ‘autisms’, and a compound or ‘fractionable’ condition; (6) from a focus on ‘pure’ autism, to recognition that complexity and comorbidity is the norm; and finally, (7) from conceptualising autism purely as a ‘developmental disorder’, to recognising a neurodiversity perspective, operationalised in participatory research models. We conclude with some challenges for the field and suggestions for areas currently neglected in autism research.
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.