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 I have added a medium sized study of unpublished research from 2002.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. | YEAR | AUTHOR | TITLE: CAN BE SHORTENED. | JOURNAL. |
| 1 | 1983 | Newson | Pathological Demand-Avoidance Syndrome. | Communication. |
| 2 | 2002 | Graham-White | Investigation into the Communication Development and General Communication of children with PDA. | Unpublished research – Autism East Midlands. |
| 3 | 2003 | Newson et al. | Pathological demand avoidance syndrome: a necessary distinction within the PDD. | Archives of Disease in Childhood. |
| 4 | 2003 | Garralda. | Pathological demand avoidance syndrome or psychiatric disorder? | Archives of Disease in Childhood. |
| 5 | 2005 | Jones. | Developing independence through the use of a colour-coded system with PDA. | Good Autism Practice. |
| 6 | 2007 | Christie. | Pathological Demand Avoidance Syndrome: Guidelines for Good Practice | Good Autism Practice. |
| 7 | 2011 | Gould & Ashton-Smith. | Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum. | Good Autism Practice. |
| 8 | 2011 | Carlile. | Helping your child with PDA to play: eight strategies for PDA. | Good Autism Practice. |
| 9 | 2011 | Wing, Gould & Gillberg. | ASD in the DSM-V: Better or worse than the DSM-IV? | Research in Dev Disabilities |
| 10 | 2012 | Harvey | The Educational Issues for the child with a diagnosis of Pathological Demand Avoidance | Good Autism Practice. |
| 11 | 2012 | Eaton & Banting. | Adult diagnosis of pathological demand avoidance – subsequent care planning | Learning Disabilities Offending |
| 12 | 2013 | Milton. | ‘Natures answer to over-conformity’: deconstructing PDA. Book chapter in 2017. | Autism Experts. |
| 13 | 2013 | Sinson. | Understanding pathological demand avoidance in children: book review. | Educational Psychology in Practice |
| 14 | 2013 | Grahame. | Understanding pathological demand avoidance in children: book review. | Child Adolescent Ment Health |
| 15 | 2014 | Saunders. | Understanding pathological demand avoidance in children: book review. | Int Journal of Primary Ed |
| 16 | 2014 | O’Nions et al. | Development of the EDA-Q for PDA traits measurement. | Child Psychology and Psychiatry. |
| 17 | 2014 | O’Nions et al. | Pathological demand avoidance: Exploring the behavioural profile. | Autism. |
| 18 | 2014 | Gillberg. | Public display of affection or pathological demand avoidance? | Child Psychology and Psychiatry. |
| 19 | 2015 | Gillberg et al. | PDA: a general population study in the Faroe Islands | Eur Child Adolescent Psychiatry. |
| 20 | 2015 | Reilly et al. | PDA in a population cohort of children with epilepsy: Four case studies. | Research in Dev Disabilities. |
| 21 | 2016 | O’Nions et al. | Identifying PDA using the DISCO. | Eur Child Adolescent Psychiatry. |
| 22 | 2016 | Langton & Frederickson | Mapping the educational experiences of children with PDA. | Journal of Research of SEN. |
| 23 | 2016 | Davis | Can I tell you about PDA: book review. | Good Autism Practice. |
| 24 | 2016 | Langton and Frederickson | Parents’ experiences of professionals’ involvement for children with PDA. | International Journal Dev Dis. |
| 25 | 2017 | Trundle et al. | Differentiating between PDA and antisocial personality disorder: a case study. | Learning Disabilities Offending |
| 26 | 2017 | Woods. | PDA: my thoughts on looping effects and commodification of autism. | Disability and Society. |
| 27 | 2017 | O’Nions, Happe and Viding. | Extreme/’pathological’ demand avoidance. | BPS DECP Debate 160. |
| 28 | 2017 | Brede et al. | Excluded from school: Autistic students exclusion and re-integration experiences. | Autism & Dev Language Impairments. |
| 29 | 2017 | Flackhill et al. | Coventry Grid Interview: Exploring autism and attachment difficulties. | Good Autism Practice. |
| 30 | 2018 | O’Nions et al. | PDA: Dimensions of difficulty in children with Autism + PDA Traits. | Child and Adol Mental Health |
| 31 | 2018 | Ogundele | Behavioural and emotional disorders: brief overview for paediatricians | World Journal Peadiatricians. |
| 32 | 2018 | Philip & Contejean. | The syndrome of pathological avoidance of requests: translated into English. | Neuropsych Child & Adolescent |
| 33 | 2018 | Green et al. | Pathological Demand Avoidance: symptoms but not a syndrome | Lancet Child & Adol Health |
| 34 | 2018 | Russell. | Being Misunderstood: Experiences of PDA Profile of ASD. | Self Published: The PDA Society. |
| 35 | 2018 | O’Nions et al. | Demand avoidance is not necessarily defiance. | Lancet Child & Adol Health |
| 36 | 2018 | Green et al. | Demand avoidance is not necessarily defiance – Author’s reply. | Lancet Child & Adol Health |
| 37 | 2018 | Egan, Lineberg & O’Nions | The Measurement of Adult Pathological Demand Avoidance Traits | Journal Autism & Devel Disorders |
| 38 | 2018 | Malik & Baird. | PDA – what’s in a name? Dimensions of difficulty, ASD and features of EDA/ PDA. | Child and Adol Mental Health |
| 39 | 2018 | Woods. | Pathological Demand Avoidance (PDA): Book Chapter. | Encyclopedia of ASDs. |
| 40 | 2018 | O’Nions & Neons. | Conceptualising demand avoidance in an ASD context – Author’s response. | Child and Adol Mental Health |
| 41 | 2018 | Woods. | PDA by PDAers, from anxiety to avoidance and masking to meltdowns: Book Review. | Disability & Society. |
| 42 | 2018 | PDA Action. | Failed by the System: EDA/ PDA in adults. | Self Published: PDA Action. |
| 43 | 2018 | Eaton et al 2018. | Modification of the Coventry Grid Interview to include PDA. | Good Autism Practice. |
| 44 | 2018 | Summerhill & Collett | Multi-agency assessment pathway for children and young people thought to have a PDA. | Good Autism Practice. |
| 45 | 2018 | Lyle & Leatherland | Preventing school exclusion: a case study of an autistic child with ADHD and a PDA profile. | Good Autism Practice. |
| 46 | 2018 | Woods. | A guide to mental health issues in girls and young women on the autism spectrum: Book Review. | Good Autism Practice. |
| 47 | 2018 | Linton et al 2018. | Retinal burns from laser pointers: a risk in children with behavioural problems. | Eye. |
| 48 | 2019 | Slaughter et al. | Criminal Behavior and School Discipline in Juvenile Justice-Involved Youth with Autism | Journal Autism & Devel Disorders |
| 49 | 2019 | Fidler | Girls who ‘can’t help won’t’: understanding the distinctive PDA profile & support approaches. Book chapter. | Girls and Autism book. |
| 50 | 2019 | Falk. | Non-complicit: Revisiting Hans Asperger’s Career in Nazi-era Vienna | Journal Autism & Devel Disorders |
| 51 | 2019 | Kay. | Research Meeting: Record of meeting held 08th January 2019. | Self Published: PDA Society. |
| 52 | 2019 | Stuart et al | Intolerance of uncertainty and anxiety for extreme demand avoidance. | Child & Adolescent Mental Health |
| 53 | 2019 | Finley. | Supporting Students with Autism and PDA: A Personal Perspective from a 14 Year Old Student. | Good Autism Practice. |
| 54 | 2019 | Bradley | A guide to mental health issues in girls and young women on the autism spectrum: Book Review. | Good Autism Practice. |
| 55 | 2019 | Woods. | Me and My PDA: A guide to PDA for young people: Book Review. | Good Autism Practice. |
| 56 | 2019 | Woods. | PDA Paradox: Highs and Lows of a little known part of the Spectrum: Book Review. | Good Autism Practice. |
| 57 | 2019 | Orn, Locke & Locke. | PDA: A Transactional Behavior Analytic Model Without Pathology In Norwegian. | Norsk Tidsskrift for Atferdsanalyse |
| 58 | 2019 | Woods. | PDA: Is it time to develop more inclusive pedagogies? | Autonomy, Critical Autism Journal. |
| 59 | 2019 | O’Nions. | Child behaviour and parenting strategies – a research update. | Self-Published Blog. |
| 60 | 2019 | Woods | Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference. | Good Autism Practice. |
| 61 | 2019 | Woods et al. | Empathy and a Personalised Approach in Autism. | Journal Autism & Devel Disorders. |
| 62 | 2019 | Peterson et al. | Trauma and Autism Spectrum Disorder: Review, Proposed Treatment Adaptations and Future Directions. | Journal of Child & Adolescent Trauma. |
| 63 | 2020 | Woods. | 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. |
| 64 | 2020 | Eaton. | 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. |
| 65 | 2020 | Doyle et al. | Mapping Experiences of Pathological Demand Avoidance in Ireland. | Self-Published: Research Report. |
| 66 | 2020 | O’Nions et al. | Parenting Strategies Used by Parents of Children with ASD: Differential Links with Child Problem Behaviour. | Journal Autism & Devel Disorders. |
| 67 | 2020 | Moore. | Pathological Demand Avoidance: What and Who are being pathologized and in whose interests? | Global Studies of Childhood. |
| 68 | 2020 | Green. | Commentary: Anxiety and behaviour in and beyond ASD; does the idea of ‘PDA’ really help? | Child & Adolescent Mental Health. |
| 69 | 2020 | Grahame et al. | Response: Anxiety and behaviour in and beyond ASD; does the idea of ‘PDA’ really help? | Child & Adolescent Mental Health. |
| 70 | 2020 | Grahame 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. |
| 71 | 2020 | Ozsivadjian | Editorial: Demand avoidance — pathological, extreme or oppositional? | Child & Adolescent Mental Health. |
| 72 | 2020 | O’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. |
| 73 | 2020 | Woods. | PDA and the DSM5: a response to Judy Eaton. | Good Autism Practice. |
| 74 | 2020 | Egan et al. | Individual differences ADHD adult pathological demand avoidance and delinquency. | Research in Developmental Disorders. |
| 75 | 2020 | Cone. | The Courage to Dream: A Beginning Psychotherapist Encounters Bion. | British Journal of Psychotherapy. |
| 76 | 2020 | Potts. | Personality disorders one. | PsyPAG Quarterly. |
| 77 | 2020 | O’Nions & Eaton. | Extreme/‘pathological’ demand avoidance: an overview | Paediatrics and Child Health. |
| 78 | 2020 | Eaton & Weaver. | Exploration of PDA/ EDA in CYP assessed for autism with ADOS-2 & their developmental histories. | Good Autism Practice. |
| 79 | 2021 | Soppitt. | Pathological/ Extreme Demand Avoidance (PDA/ EDA): Book chapter. | Special Educational Needs: A Guide for Inclusive Practice |
| 80 | 2021 | Frigaux et al. | Differential diagnosis on the autism spectrum: Theorizing an “Ordinary Autism” | L’e´volution psychiatrique |
| 81 | 2021 | Woods. | Is Pathological Demand Avoidance a “meaningful subgroup” of autism? | Pre-print. |
| 82 | 2021 | Truman et al. | Educational experiences of autistic children with and without extreme demand avoidance behaviours. | International Journal of Inclusive Education. |
| 83 | 2021 | O’Nions et al. | Extreme Demand Avoidance in Children with ASD: Refinement of a Caregiver-Report Measure. | Advances in Neurodevelopmental Disorders |
| 84 | 2021 | Tollerfield et al. | Underlying Thinking Pattern Profiles Predict Parent-Reported Distress Responses in ASD. | Journal Autism & Devel Disorders. |
| 85 | 2021 | NICE. | 2020 surveillance of autism (NICE guidelines CG128, CG142 & CG170). | Online Evidence Review. |
| 86 | 2021 | Kilhahl et al. | PDA in children and adolescents: A systematic review. | Autism. |
| 87 | 2021 | Haire & 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:
- Autism Policy and Practice, Letters to the Editors section. Please see the link below for more details.
https://www.openaccessautism.org/index.php/app/about/submissions#authorGuidelines - Autonomy, the Critical Journal of Interdisciplinary Autism Studies. Please see the link below for more details.
http://www.larry-arnold.net/Autonomy/index.php/autonomy/about/editorialPolicies#focusAndScope
- Canadian Journal of Disability Studies. Please see the link below for more details:
https://cjds.uwaterloo.ca/index.php/cjds/about/submissions - Disability and Society, Current Issues section. Please see the link below for more details.
https://www.tandfonline.com/action/authorSubmission?show=instructions&journalCode=cdso20 - Good Autism Practice, please see the link below for more details.
http://www.bild.org.uk/our-services/journals/gap/
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?
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.
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
Rational Demand Avoidance 