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. There has been some more studies of note, like Trundle et al (2022), and Schneider et al (2022). Others are articles mentioned in passing, or are relevant to PDA literature debate. Pertinently, there is another systematic review, this time in Dutch by Mols & Danckaerts (2022), it seems to be free to access and can be translated into English. My intent when I have time is to organise the literature into groups of empirical studies – mixed methods, qualitative, commentary – review articles, research reports, book chapters and book reviews.
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 | Unpublished research – Autism East Midlands.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 | 2011 | Kopp & Gillberg. | Autism Spectrum Screening Questionnaire (ASSQ)-Revised Extended Version (ASSQ-REV). | Research in Dev Disabilities. |
| 11 | 2012 | Harvey | The Educational Issues for the child with a diagnosis of Pathological Demand Avoidance | Good Autism Practice. |
| 12 | 2012 | Eaton & Banting. | Adult diagnosis of pathological demand avoidance – subsequent care planning | Learning Disabilities Offending |
| 13 | 2013 | Milton. | ‘Natures answer to over-conformity’: deconstructing PDA. Book chapter in 2017. | Autism Experts. |
| 14 | 2013 | Sinson. | Understanding pathological demand avoidance in children: book review. | Educational Psychology in Practice |
| 15 | 2013 | Grahame. | Understanding pathological demand avoidance in children: book review. | Child Adolescent Ment Health |
| 16 | 2014 | Saunders. | Understanding pathological demand avoidance in children: book review. | Int Journal of Primary Ed |
| 17 | 2014 | O’Nions et al. | Development of the EDA-Q for PDA traits measurement. | Child Psychology and Psychiatry. |
| 18 | 2014 | O’Nions et al. | Pathological demand avoidance: Exploring the behavioural profile. | Autism. |
| 19 | 2014 | Gillberg. | Public display of affection or pathological demand avoidance? | Child Psychology and Psychiatry. |
| 20 | 2015 | Gillberg et al. | PDA: a general population study in the Faroe Islands | Eur Child Adolescent Psychiatry. |
| 21 | 2015 | Reilly et al. | PDA in a population cohort of children with epilepsy: Four case studies. | Research in Dev Disabilities. |
| 22 | 2016 | O’Nions et al. | Identifying PDA using the DISCO. | Eur Child Adolescent Psychiatry. |
| 23 | 2016 | Langton & Frederickson | Mapping the educational experiences of children with PDA. | Journal of Research of SEN. |
| 24 | 2016 | Davis | Can I tell you about PDA: book review. | Good Autism Practice. |
| 25 | 2016 | Langton and Frederickson | Parents’ experiences of professionals’ involvement for children with PDA. | International Journal Dev Dis. |
| 26 | 2017 | Trundle et al. | Differentiating between PDA and antisocial personality disorder: a case study. | Learning Disabilities Offending |
| 27 | 2017 | Woods. | PDA: my thoughts on looping effects and commodification of autism. | Disability and Society. |
| 28 | 2017 | O’Nions, Happe and Viding. | Extreme/’pathological’ demand avoidance. | BPS DECP Debate 160. |
| 29 | 2017 | Brede et al. | Excluded from school: Autistic students exclusion and re-integration experiences. | Autism & Dev Language Impairments. |
| 30 | 2017 | Flackhill et al. | Coventry Grid Interview: Exploring autism and attachment difficulties. | Good Autism Practice. |
| 31 | 2018 | O’Nions et al. | PDA: Dimensions of difficulty in children with Autism + PDA Traits. | Child and Adol Mental Health |
| 32 | 2018 | Ogundele | Behavioural and emotional disorders: brief overview for paediatricians | World Journal Peadiatricians. |
| 33 | 2018 | Philip & Contejean. | The syndrome of pathological avoidance of requests: translated into English. | Neuropsych Child & Adolescent |
| 34 | 2018 | Green et al. | Pathological Demand Avoidance: symptoms but not a syndrome | Lancet Child & Adol Health |
| 35 | 2018 | Russell. | Being Misunderstood: Experiences of PDA Profile of ASD. | Self Published: The PDA Society. |
| 36 | 2018 | O’Nions et al. | Demand avoidance is not necessarily defiance. | Lancet Child & Adol Health |
| 37 | 2018 | Green et al. | Demand avoidance is not necessarily defiance – Author’s reply. | Lancet Child & Adol Health |
| 38 | 2018 | Egan, Lineberg & O’Nions | The Measurement of Adult Pathological Demand Avoidance Traits | Journal Autism & Devel Disorders |
| 39 | 2018 | Malik & Baird. | PDA – what’s in a name? Dimensions of difficulty, ASD and features of EDA/ PDA. | Child and Adol Mental Health |
| 40 | 2018 | Woods. | Pathological Demand Avoidance (PDA): Book Chapter. | Encyclopedia of ASDs. |
| 41 | 2018 | O’Nions & Neons. | Conceptualising demand avoidance in an ASD context – Author’s response. | Child and Adol Mental Health |
| 42 | 2018 | Woods. | PDA by PDAers, from anxiety to avoidance and masking to meltdowns: Book Review. | Disability & Society. |
| 43 | 2018 | PDA Action. | Failed by the System: EDA/ PDA in adults. | Self Published: PDA Action. |
| 44 | 2018 | Eaton et al 2018. | Modification of the Coventry Grid Interview to include PDA. | Good Autism Practice. |
| 45 | 2018 | Summerhill & Collett | Multi-agency assessment pathway for children and young people thought to have a PDA. | Good Autism Practice. |
| 46 | 2018 | Lyle & Leatherland | Preventing school exclusion: a case study of an autistic child with ADHD and a PDA profile. | Good Autism Practice. |
| 47 | 2018 | Woods. | A guide to mental health issues in girls and young women on the autism spectrum: Book Review. | Good Autism Practice. |
| 48 | 2018 | Linton et al 2018. | Retinal burns from laser pointers: a risk in children with behavioural problems. | Eye. |
| 49 | 2019 | Slaughter et al. | Criminal Behavior and School Discipline in Juvenile Justice-Involved Youth with Autism | Journal Autism & Devel Disorders |
| 50 | 2019 | Fidler | Girls who ‘can’t help won’t’: understanding the distinctive PDA profile & support approaches. Book chapter. | Girls and Autism book. |
| 51 | 2019 | Falk. | Non-complicit: Revisiting Hans Asperger’s Career in Nazi-era Vienna | Journal Autism & Devel Disorders |
| 52 | 2019 | Kay. | Research Meeting: Record of meeting held 08th January 2019. | Self Published: PDA Society. |
| 53 | 2019 | Stuart et al | Intolerance of uncertainty and anxiety for extreme demand avoidance. | Child & Adolescent Mental Health |
| 54 | 2019 | Finley. | Supporting Students with Autism and PDA: A Personal Perspective from a 14 Year Old Student. | Good Autism Practice. |
| 55 | 2019 | Bradley | A guide to mental health issues in girls and young women on the autism spectrum: Book Review. | Good Autism Practice. |
| 56 | 2019 | Woods. | Me and My PDA: A guide to PDA for young people: Book Review. | Good Autism Practice. |
| 57 | 2019 | Woods. | PDA Paradox: Highs and Lows of a little known part of the Spectrum: Book Review. | Good Autism Practice. |
| 58 | 2019 | Orn, Locke & Locke. | PDA: A Transactional Behavior Analytic Model Without Pathology In Norwegian. | Norsk Tidsskrift for Atferdsanalyse |
| 59 | 2019 | Woods. | PDA: Is it time to develop more inclusive pedagogies? | Autonomy, Critical Autism Journal. |
| 60 | 2019 | O’Nions. | Child behaviour and parenting strategies – a research update. | Self-Published Blog. |
| 61 | 2019 | Woods | Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference. | Good Autism Practice. |
| 62 | 2019 | Woods et al. | Empathy and a Personalised Approach in Autism. | Journal Autism & Devel Disorders. |
| 63 | 2019 | Peterson et al. | Trauma and Autism Spectrum Disorder: Review, Proposed Treatment Adaptations and Future Directions. | Journal of Child & Adolescent Trauma. |
| 64 | 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. |
| 65 | 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. |
| 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. |
| 88 | 2021 | Delling & Boeckers. | Comparison of SHANK3 deficiency in animal models: phenotypes, treatment strategies, and translational implications. | Journal Neurodevelopmental Disorders. |
| 89 | 2022 | Christie et al. | Identifying & Assessing a PDA profile – Practice Guidance. | PDA Society. |
| 90 | 2022 | Ng-Cordell et al. | Anxiety and Trauma-Related Disorders in Children on the Autism Spectrum | Current Psychiatry Reports. |
| 91 | 2022 | Petrolini & Vicente. | Challenges raised by comorbidity in psychiatric research: Case of autism. | Philosophical Psychology. |
| 92 | 2022 | McQuaid et al. | Borderline personality and late, missed, and mis-diagnosis in female autism: Literature Review. | Pre-print. |
| 93 | 2022 | Barbara Band. | Teacher’s Introduction to PDA: Essential Strategies for the Classroom: Book review. | Unsure. |
| 94 | 2022 | Green et al. | An integrated early care pathway for autism. | Lancet Child & Adol Health. |
| 95 | 2022 | White et al. | Understanding the Contributions of Trait Autism and Anxiety to Extreme Demand Avoidance in the Adult General Population. | Journal Autism & Devel Disorders. |
| 96 | 2022 | Schneider et al. | Determinants of the evolutions of behaviours, school adjustment and quality of life in autistic children in an adapted school setting: with the International Classification of Functioning, disability and health. | BMC Psychiatry |
| 97 | 2022 | Cervin. | Developmental signs of ADHD and autism: a prospective investigation in 3623 children. | Eur Child Adolescent Psychiatry. |
| 98 | 2022 | Mols & Danckaerts. | Diagnostic validity of the concept Pathological Demand Avoidance: a systematic review. Seems publicly available and can be translated into English from Dutch. | Tijdschrift voor Geneeskunde |
| 99 | 2022 | Stewart-Ferrer | PDA – a new perspective in consulting by autism profiles. Translated into English from Danish. | Pædagogisk Psykologisk Tidsskrift. |
| 100 | 2022 | Morgan | Perhaps a PDA brain would help – Book Review | Lancet Child & Adol Health |
| 101 | 2022 | Carson et al. | association between early childhood onset epilepsy &ADHD in 3237 autistic children: historical longitudinal study. | European Child & Adolescent Psychiatry. |
| 102 | 2022 | Lupindo, Maw, & Shabalala. | Exploring experiences of males diagnosed with autism in adulthood. | Current Psychology. |
| 103 | 2022 | Mittelst¨adt, Millier, & Kiesel. | Perceptual processing demands influence voluntary task choice. | Cognition. |
| 104 | 2022 | Friedman et al. | ‘A new adventure’: a case study of autistic children at Forest School. | Journal of Adventure Education and Outdoor Learning |
| 105 | 2022 | Trundle et al. | Study into victimisation and offending associated with autism and PDA. | Advances in Autism. |
| 106 | 2022 | Doyle & Kenny | Mapping experiences of pathological demand avoidance in Ireland | Journal of Research of SEN |
| 107 | 2022 | Woods | Rational (Pathological) Demand Avoidance: As a mental disorder and an evolving social construct | International Handbook of Critical Autism Studies. |
*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 a short essay published in The Spectrum magazine:
- PDA: A Preventable Delicate Activity.
https://www.researchgate.net/publication/364348379_PDA_A_Preventable_Delicate_Activity
A new book chapter in the Critical Autism Studies Handbook published by Routledge, due to be released in December 2022:
- Rational (Pathological) Demand Avoidance: As a mental disorder and an evolving social construct.
I am co-researcher in a study to initially validate a self-report questionnaire to investigate An Interest Based Account of Autism, otherwise known as Monotropism Theory in autistic persons:
- Development and Validation of a Novel Self-Report Measure of Monotropism in Autism.
Latest conference paper discussion how PDA is socially constructed as a “Profile of ASD”:
- Demand-Avoidance Phenomena (“Pathological”/ “Extreme” Demand Avoidance): As a Social Construct.
I delivered a short talk on autism & mental health in March 2022:
- Autism & mental health.
https://www.researchgate.net/publication/359624177_Autism_mental_health
Frontiers in Education “Pathological Demand-Avoidance” Special Issue Call For Papers.
I, Professor Eddie Chaplin, and Dr Allison Moore have a special issue on DAP in the journal, Frontiers in Education. Presently, we have a call for papers running until 30th of June 2023. If you would like more information, please see the link below:
References.
Carson, L., Parlatini, V., Safa, T., Baig, B., Shetty, H., Phillips‑Owen, J.,… Downs, J. (2022). The association between early childhood onset epilepsy and attention‑deficit hyperactivity disorder (ADHD) in 3237 children and adolescents with Autism Spectrum Disorder (ASD): a historical longitudinal cohort data linkage study. European Child & Adolescent Psychiatry. DOI: https://doi.org/10.1007/s00787-022-02041-3
Cervin, M. (2022). Developmental signs of ADHD and autism: a prospective investigation in 3623 children. European Child & Adolescent Psychiatry. DOI: https://doi.org/10.1007/s00787-022-02024-4
Doyle, A., & Kenny, N. (2022). Mapping experiences of pathological demand avoidance in Ireland. Journal of Research in Special Educational Needs. DOI: https://nasenjournals.onlinelibrary.wiley.com/doi/full/10.1111/1471-3802.12579 (Accessed 11 December 2022).
Friedman, S., Gibson, J., Jones, C., & Hughes, C. (2022). ‘A new adventure’: a case study of autistic children at Forest School. Journal of Adventure Education and Outdoor Learning. DOI: https://doi.org/10.1080/14729679.2022.2115522
Greem, J., Leadbitter, K., Ainsworth, J., & Bucci, S. (2022). An integrated early care pathway for autism. Lancet Child & Adolescent Health, 6(5), 335-344.
Lupindo, B., Maw, A., & Shabalala, N. (2022). Late diagnosis of autism: exploring experiences of males diagnosed with autism in adulthood. Current Psychology. DOI: https://doi.org/10.1007/s12144-022-03514-z
Mittelst¨adt, V., Miller, J., & Kiesel, A. (2022). Perceptual processing demands influence voluntary task choice. Cognition, 229(December 2022, 105232). DOI: https://doi.org/10.1016/j.cognition.2022.105232
Mols, D., & Danckaerts, M. (2022). Diagnostische validiteit van het concept Pathological Demand Avoidance: een systematische literatuurreview. TVGG. Retrieved from: https://tvgg.be/nl/proefschriften/diagnostische-validiteit-van-het-concept-pathological-demand-avoidance-een-systematische-literatuurreview (Accessed 28 November 2022).
Morgan, J. (2022). Perhaps a PDA brain would help. Lancet Child & Adolescent Health, 6(10), p680.
Schneider, S., Clément, C., Goltzene, M., Meyer, N., Gras‑Vincendon, A., Schröder, C., & Coutelle, R. (2022). Determinants of the evolutions of behaviours, school adjustment and quality of life in autistic children in an adapted school setting: an exploratory study with the International Classification of Functioning, disability and health (ICF). BMC Psychiatry, 22, 323(2022). DOI: https://doi.org/10.1186/s12888-022-03924-0 (11 of December 2022).
Stewart-Ferrer, C. (2022). PDA – et nyt perspektiv i rådgivning ved autismeprofiler (Online Resource). Retrieved from: https://www.researchgate.net/publication/361264707_PDA_-_et_nyt_perspektiv_i_radgivning_ved_autismeprofiler (Accessed 11 December 2022).
Trundle, G., Jones, K., Ropar., R., & Egan, V. (2022). The forensic implications of camouflaging: a study into victimisation and offending associated with autism and pathological demand avoidance. Advances in Autism. DOI: https://doi.org/10.1108/AIA-02-2022-0006
Woods, R. (2022). Rational (Pathological) Demand Avoidance: As a mental disorder and an evolving social construct. In: Milton, D., & Ryan, S. (Eds), The Routledge International Handbook of Critical Autism Studies (20 pages), Abingdon-on-Thames, UK, Routledge Publishing.
Rational Demand Avoidance 