24TH OF OCTOBER 2021 UPDATE TO THE LIST OF DEMAND AVOIDANCE PHENOMEMA ARTICLES & CHAPTERS.

24TH OF OCTOBER 2021 UPDATE TO THE LIST OF DEMAND AVOIDANCE PHENOMEMA ARTICLES & CHAPTERS.

Introduction.

This is a quick update to the list of articles and book chapters currently extant on Demand Avoidance Phenomena (DAP, commonly called Pathological Demand Avoidance). There are several new pieces of scholarship in print, some more important than others, but all make some contributions to the literature, which can be found in the reference list. I have added a medium sized study of unpublished research from 2002. More recently there are 3 new research articles, and 3 review articles. Most pertinently a systematic review and a review of evidence by National Institute for Health and Care Excellence (NICE): which have noted there is not enough evidence to say what DAP is; did not assume DAP was a form of autism; treated DAP’s divergent opinions equally. Both these two reviews represent typical research and practice standards with mental Disorders, which all DAP stakeholders should be following.

Updated List of DAP Articles.

DAP ARTICLES TIMELINE BY YEAR.
NUMBER.YEARAUTHORTITLE: CAN BE SHORTENED.JOURNAL.
11983NewsonPathological Demand-Avoidance Syndrome.Communication.
22002Graham-WhiteInvestigation into the Communication Development and General Communication of children with PDA.Unpublished research – Autism East Midlands.
32003Newson et al.Pathological demand avoidance syndrome: a necessary distinction within the PDD.Archives of Disease in Childhood.
42003Garralda.Pathological demand avoidance syndrome or psychiatric disorder?Archives of Disease in Childhood.
52005Jones.Developing independence through the use of a colour-coded system with PDA.Good Autism Practice.
62007Christie.Pathological Demand Avoidance Syndrome: Guidelines for Good PracticeGood Autism Practice.
72011Gould & Ashton-Smith.Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum.Good Autism Practice.
82011Carlile.Helping your child with PDA to play: eight strategies for PDA.Good Autism Practice.
92011Wing, Gould & Gillberg.ASD in the DSM-V: Better or worse than the DSM-IV?Research in Dev Disabilities
102012HarveyThe Educational Issues for the child with a diagnosis of Pathological Demand AvoidanceGood Autism Practice.
112012Eaton & Banting.Adult diagnosis of pathological demand avoidance – subsequent care planningLearning Disabilities Offending
122013Milton.‘Natures answer to over-conformity’: deconstructing PDA. Book chapter in 2017.Autism Experts.
132013Sinson.Understanding pathological demand avoidance in children: book review.Educational Psychology in Practice
142013Grahame.Understanding pathological demand avoidance in children: book review.Child Adolescent Ment Health
152014Saunders.Understanding pathological demand avoidance in children: book review.Int Journal of Primary Ed
162014O’Nions et al.Development of the EDA-Q for PDA traits measurement.Child Psychology and Psychiatry.
172014O’Nions et al.Pathological demand avoidance: Exploring the behavioural profile.Autism.
182014Gillberg.Public display of affection or pathological demand avoidance?Child Psychology and Psychiatry.
192015Gillberg et al.PDA: a general population study in the Faroe IslandsEur Child Adolescent Psychiatry.
202015Reilly et al.PDA in a population cohort of children with epilepsy: Four case studies.Research in Dev Disabilities.
212016O’Nions et al.Identifying PDA using the DISCO.Eur Child Adolescent Psychiatry.
222016Langton & FredericksonMapping the educational experiences of children with PDA.Journal of Research of SEN.
232016DavisCan I tell you about PDA: book review.Good Autism Practice.
242016Langton and FredericksonParents’ experiences of professionals’ involvement for children with PDA.International Journal Dev Dis.
252017Trundle et al.Differentiating between PDA and antisocial personality disorder: a case study.Learning Disabilities Offending
262017Woods.PDA: my thoughts on looping effects and commodification of autism.Disability and Society.
272017O’Nions, Happe and Viding.Extreme/’pathological’ demand avoidance.BPS DECP Debate 160.
282017Brede et al.Excluded from school: Autistic students exclusion and re-integration experiences.Autism & Dev Language Impairments.
292017Flackhill et al.Coventry Grid Interview: Exploring autism and attachment difficulties.Good Autism Practice.
302018O’Nions et al.PDA: Dimensions of difficulty in children with Autism + PDA Traits.Child and Adol Mental Health
312018OgundeleBehavioural and emotional disorders:  brief overview for paediatriciansWorld Journal Peadiatricians.
322018Philip & Contejean.The syndrome of pathological avoidance of requests: translated into English.Neuropsych Child & Adolescent
332018Green et al.Pathological Demand Avoidance: symptoms but not a syndromeLancet Child & Adol Health
342018Russell.Being Misunderstood: Experiences of PDA Profile of ASD.Self Published: The PDA Society.
352018O’Nions et al.Demand avoidance is not necessarily defiance.Lancet Child & Adol Health
362018Green et al.Demand avoidance is not necessarily defiance – Author’s reply.Lancet Child & Adol Health
372018Egan, Lineberg & O’NionsThe Measurement of Adult Pathological Demand Avoidance TraitsJournal Autism & Devel Disorders
382018Malik & Baird.PDA – what’s in a name? Dimensions of difficulty, ASD and features of EDA/ PDA.Child and Adol Mental Health
392018Woods.Pathological Demand Avoidance (PDA): Book Chapter.Encyclopedia of ASDs.
402018O’Nions & Neons.Conceptualising demand avoidance in an ASD context – Author’s response.Child and Adol Mental Health
412018Woods.PDA by PDAers, from anxiety to avoidance and masking to meltdowns: Book Review.Disability & Society.
422018PDA Action.Failed by the System: EDA/ PDA in adults.Self Published: PDA Action.
432018Eaton et al 2018.Modification of the Coventry Grid Interview  to include PDA.Good Autism Practice.
442018Summerhill & CollettMulti-agency assessment pathway for children and young people thought to have a PDA.Good Autism Practice.
452018Lyle & LeatherlandPreventing school exclusion: a case study of an  autistic child with ADHD and a PDA profile.Good Autism Practice.
462018Woods.A guide to mental health issues in girls and young women on the autism spectrum: Book Review.Good Autism Practice.
472018Linton et al 2018.Retinal burns from laser pointers: a risk in children with behavioural problems.Eye.
482019Slaughter et al.Criminal Behavior and School Discipline in Juvenile Justice-Involved Youth with AutismJournal Autism & Devel Disorders
492019FidlerGirls who ‘can’t help won’t’: understanding the distinctive PDA profile & support approaches. Book chapter.Girls and Autism book.
502019Falk.Non-complicit: Revisiting Hans Asperger’s Career in Nazi-era ViennaJournal Autism & Devel Disorders
512019Kay.Research Meeting: Record of meeting held 08th January 2019.Self Published: PDA Society.
522019Stuart et alIntolerance of uncertainty and anxiety for extreme demand avoidance.Child & Adolescent Mental Health
532019Finley.Supporting Students with Autism and PDA: A Personal Perspective from a 14 Year Old Student.Good Autism Practice.
542019BradleyA guide to mental health issues in girls and young women on the autism spectrum: Book Review.Good Autism Practice.
552019Woods.Me and My PDA: A guide to PDA for young people: Book Review.Good Autism Practice.
562019Woods.PDA Paradox: Highs and Lows of a little known part of the Spectrum: Book Review.Good Autism Practice.
572019Orn, Locke & Locke.PDA: A Transactional Behavior Analytic Model Without Pathology In Norwegian.Norsk Tidsskrift for Atferdsanalyse
582019Woods.PDA: Is it time to develop more inclusive pedagogies?Autonomy, Critical Autism Journal.
592019O’Nions.Child behaviour and parenting strategies – a research update.Self-Published Blog.
602019WoodsDemand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference.Good Autism Practice.
612019Woods et al.Empathy and a Personalised Approach in Autism.Journal Autism & Devel Disorders.
622019Peterson et al.Trauma and Autism Spectrum Disorder: Review, Proposed Treatment Adaptations and Future Directions.Journal of Child & Adolescent Trauma.
632020Woods.Commentary: Demand Avoidance Phenomena, a manifold issue? Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents – a commentary on Stuart et al. (2019)Child & Adolescent Mental Health.
642020Eaton.A Response to Wood’s paper – Demand Avoidance Phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference.Good Autism Practice.
652020Doyle et al.Mapping Experiences of Pathological Demand Avoidance in Ireland.Self-Published: Research Report.
662020O’Nions et al.Parenting Strategies Used by Parents of Children with ASD: Differential Links with Child Problem Behaviour.Journal Autism & Devel Disorders.
672020Moore.Pathological Demand Avoidance: What and Who are being pathologized and in whose interests?Global Studies of Childhood.
682020Green.Commentary: Anxiety and behaviour in and beyond ASD; does the idea of ‘PDA’ really help?Child & Adolescent Mental Health.
692020Grahame et al.Response: Anxiety and behaviour in and beyond ASD; does the idea of ‘PDA’ really help?Child & Adolescent Mental Health.
702020Grahame et al.Response: DAP: a manifold issue? Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents.Child & Adolescent Mental Health.
712020OzsivadjianEditorial: Demand avoidance — pathological, extreme or oppositional?Child & Adolescent Mental Health.
722020O’Connor & McNicholas.Lived Experiences of Diagnostic Shifts in Child and Adolescent Mental Health Contexts: a Qualitative Interview Study CYP & Carers.Journal of Abnormal Child Psychology.
732020Woods.PDA and the DSM5: a response to Judy Eaton.Good Autism Practice.
742020Egan et al.Individual differences ADHD adult pathological demand avoidance and delinquency.Research in Developmental Disorders.
752020Cone.The Courage to Dream: A Beginning Psychotherapist Encounters Bion.British Journal of Psychotherapy.
762020Potts.Personality disorders one.PsyPAG Quarterly.
772020O’Nions & Eaton.Extreme/‘pathological’ demand avoidance: an overviewPaediatrics and Child Health.
782020Eaton & Weaver.Exploration of PDA/ EDA in CYP assessed for autism with ADOS-2 & their developmental histories.Good Autism Practice.
792021Soppitt.Pathological/ Extreme Demand Avoidance (PDA/ EDA): Book chapter.Special Educational Needs: A Guide for Inclusive Practice
802021Frigaux et al.Differential diagnosis on the autism spectrum: Theorizing an “Ordinary Autism”L’e´volution psychiatrique
812021Woods.Is Pathological Demand Avoidance a “meaningful subgroup” of autism?Pre-print.
822021Truman et al.Educational experiences of autistic children with and without extreme demand avoidance behaviours.International Journal of Inclusive Education.
832021O’Nions et al.Extreme Demand Avoidance in Children with ASD: Refinement of a Caregiver-Report Measure.Advances in Neurodevelopmental Disorders
842021Tollerfield et al.Underlying Thinking Pattern Profiles Predict Parent-Reported Distress Responses in ASD.Journal Autism & Devel Disorders.
852021NICE.2020 surveillance of autism (NICE guidelines CG128, CG142 & CG170).Online Evidence Review.
862021Kilhahl et al.PDA in children and adolescents: A systematic review.Autism.
872021Haire & Symonds.Methods of Studying PDA in Children and Adolescents: A Scoping Review Protocol.Pre-print.

*The articles that have autistic authors are marked by using bold and italics.

Journals where DAPers can publish their own articles.

For DAPers to have their work published they must meet the aims & scopes of the journal, along with their work being to academic standard. The list of journals which provide spaces for autistic persons to get their voice into the academic literature are:

http://www.larry-arnold.net/Autonomy/index.php/autonomy/about/editorialPolicies#focusAndScope

General advice when writing an article and choosing an appropriate journal, is to be aware of the audience each journal has and the politics of the journal. Good Autism Practice appears to be an important outlet for DAP literature. Picking a suitable journal for your work is crucial step in the process of getting an article published, however it is hard work and the feedback that you will receive may appear harsh. Most reviewers’ feedback is there to improve the article, so it is worth acting on it where possible. Contrastingly, sometimes reviewers will reject an article because it goes against their views or agenda, which is why picking an appropriate journal is pivotal to getting an article published. I look forward to reading future DAPer authored articles.

My latest research.

I have recently had the pre-print peer reviewed:

  • Is Pathological Demand Avoidance a “meaningful subgroup” of autism?

https://osf.io/8sbvw/

A new blog post detailing several different diagnostic thresholds on DAP. The blog post has been described by one clinician as “having done an absolutely first class job of summarising all the past literature and perspectives on PDA.  No one else has done anywhere near as good, or as thorough, a job as you have.” (I am unsure if I should use this quote as some would use it is as evidence I am not a DAPer as they frequently meant to dislike receiving praise).:

A commentary article published in Good Autism Practice:

–           Pathological Demand Avoidance and the DSM-5: a rebuttal to Judy Eaton’s response.

https://www.researchgate.net/publication/339240845_Pathological_Demand_Avoidance_and_the_DSM-5_a_rebuttal_to_Judy_Eaton

Additionally, I and others have had a short essay published in Journal of Autism and Developmental Disorders:

–           Empathy and a Personalised Approach in Autism.

https://doi.org/10.1007/s10803-019-04287-4

A book chapter describing what the sub-discipline Critical Autism Studies is, I lead authored it and it can be found here and it is currently free to access:

https://link.springer.com/referenceworkentry/10.1007/978-1-4614-6435-8_102297-2

Autism Policy and Practice Call for Papers.

The autistic-led good practice journal, Autism Policy and Practice has published its first edition under the current editor team. This can be accessed via the link below:

https://www.openaccessautism.org/index.php/app/issue/view/4

The journal currently has a call for papers on Participatory Autism Research Collective 2020 Conference edition:

https://www.openaccessautism.org/index.php/app/announcement/view/4

References.

Graham-White, C. (2002). An Investigation into the Communication Development and General Communication of children with Pathological Demand Avoidance Syndrome (Unpublished research). Retrieved from: https://www.autismeastmidlands.org.uk/wp-content/uploads/2016/10/Communication-development-of-Children-with-pathological-Demand-Avoidance-Syndrome.pdf (Accessed 24 October 2021).

Haire, L., &Symonds, J. (2021). Methods of Studying Pathological Demand Avoidance in Children and Adolescents: A Scoping Review Protocol (Pre-print). Retrieved from: https://psyarxiv.com/cekxp/ (Accessed 24 October 2021).

Kildahl, A., Helverschou, S., Rysstad, A., Wigaard, E., Hellerud, J., Ludvigsen, L., & Howlin, P. (2021). Pathological demand avoidance in children and adolescents: A systematic review. Autism. DOI: https://journals.sagepub.com/doi/full/10.1177/13623613211034382     

National Institute for Health and Care Excellence (NICE). (2021). Surveillance consultation report October 2020 – Autism theme (NICE guidelines CG128, CG142 and CG170) (Online document). Retrieved from: https://www.nice.org.uk/guidance/cg128/documents/surveillance-review-proposal (Accessed 03 September 2021).

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, 5(2021),269–281.

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    

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     

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