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Academic papers from research institutions developing the evidence base

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Mapping experiences of PDA in Ireland

Mapping experiences of pathological demand avoidance in Ireland. This national study sought to gather the viewpoints of PDA individuals, families, and practitioners, with the intention of determining levels of knowledge, recognition and understanding of PDA; exploring current pathways to assessment and diagnosis; capturing experiences of access to education and healthcare services; identifying effective intervention and support strategies; and illuminating education and health outcomes for individuals and families. This mixed-method study collates survey responses from 264 parents, 9 life partners, 6 PDA individuals and 54 practitioners, and in-depth individual and focus group interviews from these cohorts. Findings suggest that a flexible, informed and individualised approach to assessment and service provision for PDA individuals presenting with a PDA profile is essential. Practitioners universally referred to the necessity for a streamlined, integrated and multi-disciplinary approach. The reported disconnect between education and health systems indicates a need for access to services on an equitable basis.   Authors: Alison Doyle and Neil Kenny Published: Journal of Research in Special Educational Needs, November 2022   View open access article   Please also see: Mapping Experiences of PDA in Ireland Executive Summary - an initial summary of the findings of this study published in January 2020 Practice Guidance – Ireland - a series of seven evidence-based practical [...]

Extreme Demand Avoidance 8-item measure (EDA-8)

In 2013, Dr Liz O’Nions et al developed the Extreme Demand Avoidance Questionnaire (EDA-Q) to measure caregiver reported behaviours in clinical accounts of extreme/‘pathological’ demand avoidance in Autistic children and young people aged 5-17.  This questionnaire sought to measure these traits consistently for research purposes, but was not designed to be a diagnostic test. In 2021, O’Nions et al further refined the EDA-Q to provide a caregiver report measure of 8 items, the EDA-8. The items dropped from the EDA-Q were those which showed less consistency with child age, gender, ability or independence. The items retained were found to cover the features consistently described in accounts of PDA. The EDA-8 is designed for research purposes and has not been tested in clinical settings. The English version of the EDA-8 can be downloaded here. The Norwegian version* of the EDA-8 (translated by Torill Fjæran-Granum) can be downloaded here. The Spanish version* of the EDA-8 (translated by Rocio Manzanera Lidon) can be downloaded here. The Finnish version* of the EDA-8 (translated by Autism Finland) can be downloaded here. The 2021 study describing the refinement of the EDA-8 can be found here. The original article describing development of the EDA-Q can be found here. PLEASE NOTE: [...]

Extreme Demand Avoidance in Children: Refinement of a Caregiver-Report Measure

Extreme Demand Avoidance in Children with Autism Spectrum Disorder: Refinement of a Caregiver-Report Measure For anyone involved in either research or in the assessment of neurodevelopmental conditions, this adaptation of the EDA-Q will be of interest. Called the EDA-8, it is a refined and simplified scale that benefits from the lack of a cut-off score. While not suitable for use as a diagnostic tool, it could help to identify individuals where further investigation of features of PDA is warranted.   Authors: Elizabeth O’Nions, Francesca Happé, Essi Viding & Ilse Noens Published: Advances in Neurodevelopmental Disorders, May 2021   View paper

Alternative perspectives on PDA

Alternative perspectives on PDA The PDA Society’s current position, based on research, clinical evidence and lived experience, is that PDA is best understood as a profile on the autism spectrum. However it’s important to acknowledge the alternative perspectives on PDA that are currently evident. These relate to the usefulness of the construct, the use of terminology and PDA’s possible relationship to other conditions; and they all seek to further understanding and improve outcomes. Below are some of the alternative perspectives. The use of the term PDA is unnecessary and unhelpful because all assessments should pick up on all traits and be able to make appropriate recommendations that are helpful. The use of the term PDA causes division within the autistic community who, for the most part, are opposed to any sub-typing of autism. When looking from an autistic perspective, PDA is ‘rational’ and nature’s answer to over-conformity (Milton), thus the term is inappropriate because it pathologises natural behaviours. Oppositional Defiance Disorder could be diagnosed as a co-occurring condition alongside autism as an alternative to using the term PDA (Green et al). PDA could be described instead by Attachment Disorder, Personality Disorder or Trauma. PDA could be particularly associated with ADHD (Egan) and could [...]

Pathological demand avoidance in children and adolescents: A systematic review

Pathological demand avoidance in children and adolescents: A systematic review There has been a lack of funding of research into PDA to date and so this timely paper is particularly useful for giving an overview of the research history and looking to the future and what is needed. With any newly identified entity, construct or concept there is a period of time where knowledge is necessarily limited, and a variety of investigations will be needed to judge in what ways, if any, it is helpful. It isn’t a reflection on the work done to date, but a feature of research development that means that there is more to do. It is unfortunate that this review was conducted before the publication of more authoritative clinically-based research (such as Eaton and Weaver). Nevertheless, they point to a number of areas where research is still much needed. The paper highlights the particular value in longitudinal studies which might look at avoidant behaviour over time. Detailed research into the nature of ‘demands’, and the impact of context and environment upon them is another important starting point. They also suggest the need for systematic explorations of associations between PDA and anxiety and traumatic experiences. If the notion of [...]

Individual differences, ADHD, Adult Pathological Demand Avoidance and delinquency

Individual differences, ADHD, Adult Pathological Demand Avoidance and delinquency In this paper, Egan et al looked at a range of different characteristics of a group of adults to analyse how PDA might fit with other described conditions. They used the EDA-Q developed in their previous work as a self-report tool for adults (EDA-QA; Egan et al 2018) and invited adults who identified themselves as having PDA to complete it and a number of other surveys including personality traits. As a forensic psychology department, they were interested to learn more about the construct and how it might relate to the potential for criminal behaviour, or ‘delinquency’. The results showed that for community adult populations, self-reported individual differences in ADHD, emotional instability, and antagonism appear to better predict the PDA than ASD. They went on to suggest that the association PDA has with delinquency may reflect these constructs, which are also correlates of offending. The results are interesting and appear to be a challenge to clinical experience. The EDA-Q is known to capture those who are extremely demand avoidant for a range of reasons, so to repeat this work within a clinical cohort would be a useful next step.   Authors: Vincent Egan, Elinor Bull, and [...]

The educational experiences of autistic children

The educational experiences of autistic children with and without extreme demand avoidance behaviours Shining a light on the types of difficulties that all autistic children can experience in school and how it can vary individually. Parent’s views on the key causes of problems provides an insight into what can help reduce negative experiences. A very helpful addition to the research literature. ABSTRACT 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 [...]

An exploration of the PDA profile in children

An exploration of the Pathological (or Extreme) Demand Avoidant profile in children referred for an autism diagnostic assessment using data from ADOS-2 assessments and their developmental histories This paper represents the first step in analysing and reporting on data gathered between 2015 and 2017 on 351 children referred to Dr Judy Eaton’s clinic for assessment for Autism. The first part of the paper reports the differences that were found in the scores on Module 3 of the ADOS-2 (one of the tools used to diagnose Autism) between those children who went on to receive a diagnosis of Autism and those who received a diagnosis of Autism with a PDA profile. The second part of the paper reports on the ‘themes’ that emerged when comparing the developmental histories of autistic children with a PDA profile and non-autistic children who had a history of attachment difficulties. A number of these ‘themes’ were seen infrequently, if ever, in those children with documented early trauma or attachment difficulties. ‘Themes’ included those previously identified in the existing literature, plus a number of interesting new findings. Dr. Eaton told us “We are not claiming that our data provides proof of the PDA profile as a separate diagnostic category. [...]

Extreme/‘pathological’ demand avoidance: an overview

Extreme/‘pathological’ demand avoidance: an overview In this article, Elizabeth O'Nions and Judy Eaton provide an overview of PDA, discuss the clinical presentation of individuals with a PDA profile, and differences compared to children with documented attachment difficulties. They then discuss empirical work describing how anxiety-driven avoidance of routine demands can emerge in autistic children and provide recommendations for strategies that aim to avoid strengthening habitual avoidance behaviours, and instead, allow new mutually rewarding routines to develop, which may provide opportunities to gradually increase the child's tolerance of demands. The authors argue that using the PDA profile, or describing relevant behaviours, as part of a clinical formulation can be helpful in alerting caregivers and educational professionals to particular challenges surrounding some autistic children’s ability to comply with everyday requests.   Authors: Elizabeth O'Nions & Judith Eaton Published: Paediatrics and Child Health, October 2020 Also freely available via Liz O'Nions's research website Help for Psychology has also written this summary   View article Access article via journal View article via Liz O'Nions's website

Parenting strategies in ASD

Parenting Strategies Used by Parents of Children with ASD: Differential Links with Child Problem Behaviour In this paper, Liz O'Nions explores a new scale which is designed to measure strategies for problem behaviour in ASD. The results are especially interesting as more than half of those involved in the study were considered to have a PDA profile. The research found that the 'Parenting Strategies Questionnaire' (which had been described in an earlier paper) was useful as it looks at measures that other scales were less able to consider. In addition, it showed that the parents of ASD young people who exhibited problem behaviour were more likely to accommodate their children's needs (included making adjustments or allowing things to be done on the child's terms) and would also do more to reduce uncertainty. The study also measured 'reinforcement approaches', use of discipline and rewards, but these were not found to be more or less used according to the child's behaviour. This appears to be the first study to show that parents adapt some aspects of their parenting strategies according to the ASD child's behaviour profile.   Authors: Elizabeth O’Nions, Eva Ceulemans, Francesca Happé, Paul Benson, Kris Evers, Ilse Noens Published: Journal of Autism and Developmental Disorders, online 1 [...]

Role of Intolerance of Uncertainty and Anxiety

Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents This research was conducted by researchers at the Complex Neurodevelopmental Disorder Service and South Tyneside Community Team, Tyne and Wear NHS Foundation Trust, and School of Psychology, Newcastle University. The abstract concludes: "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."   Authors: Lisa Stuart, Victoria Grahame, Emma Honey, Mark Freeston Published: 22 May 2019, Child and Adolescent Mental Health   View paper

CAMH Journal discussions

In 2019, a paper from Lisa Stuart, Victoria Grahame and others at Newcastle University described how intolerance of uncertainty and anxiety may have a role in the demand avoidant behaviour of those identified as having a PDA profile. The May 2020 edition of the journal Child and Adolescent Mental Health republished the paper alongside commentary from Jonathan Green and a response to this from the original authors. In addition, Ann Ozsivadjian brought it all together with an editorial. In it she suggests that it will only be possible to develop suitable support when the underlying mechanisms are understood, and that also requires adequate definitions. It is hoped that the discussion will encourage further development of practical research. The full editorial is available to read here. Ann also recorded a podcast discussing PDA which is available on the ACAMH website here.   Access all papers  

Autism, PDA presentations and Theory of Mind

The Relationship between Theory of Mind and Traits Associated with Autism Spectrum Condition and Pathological Demand Avoidance Presentations UCL Doctorate Thesis in Clinical Psychology by Ellie Bishop Extracts from the Impact Statement: The overall aim of this thesis was to contribute to an understanding of the relationship between theory of mind (ToM), and traits and behaviour in children with and without autism spectrum condition (ASC)…. The literature review found that better ToM capacity relates to lower levels of aggressive behaviour in childhood, especially in children under the age of six… The empirical study found lower parent-reported ToM in children with ASC compared to controls, and that better ToM significantly predicted lower rates of social and communication impairments in ASC… The empirical paper also studied pathological demand avoidance (PDA) traits in ASC. PDA traits in ASC are not well understood, but have been associated with increased rates of behavioural difficulty, parental stress and educational exclusion. There was no relationship between these traits and ToM. This suggests the mechanisms underlying these behaviours may differ to those implicated with core traits in ASC and stresses the need for professionals to develop distinct behavioural management and support strategies to manage these. In addition, the paper reveals much-needed insight [...]

Emotion Regulation and Executive Function

Emotion Regulation and Executive Function in Children and Adolescents with Autism Spectrum Disorder and Pathological Demand Avoidance Traits UCL Doctorate Thesis in Clinical Psychology by Anna Goodson Extracts from impact Statement The overarching aim of this research was to contribute to current understanding of cognitive processes and behaviours relevant to young people with Autism Spectrum Disorder (ASD)... A literature review investigated self- and parent-reported Emotion Regulation (ER) in children and young people with ASD. Overall, ER appeared to be impaired in young people with ASD compared to typically developing (TD) children... The empirical study was the first to investigate the relationship between parent- reported Executive Function (EF) and Pathological Demand Avoidance (PDA) behaviours in children with ASD. Overall, children with ASD and PDA traits appeared to have more EF deficits than non-ASD children, suggesting that difficulties with EF should be considered when offering support to children and families. ...when assessing non-compliance behaviour, it could be useful for clinicians to consider firstly what the demand is, and then which EF skills are needed. This study raised awareness of some of the difficulties that children with ASD and PDA traits face, and the need for the development of more helpful support strategies...   Author: Anna Goodson Published: University College London, 2018 View [...]

Progressing the research

Research Meeting Report PDA is currently widely understood as being part of the autism spectrum. However, this area of research is in its infancy, with a range of perspectives currently evident. High quality, robust research is urgently needed to increase our understanding of autism as a whole, and demand avoidance specifically; to identify what approaches are helpful; and to establish how we can all best talk about the PDA profile. On Tuesday 8th January 2019, the PDA Society hosted a research meeting to share current findings, thinking and insights by academic researchers and other stakeholders. The aim was to share existing research work, build greater common understanding, identify research priorities and focus on what can be done to help. 31 participants came from across the UK and Ireland and all found the meeting to be worthwhile and positive. View report Relevant published articles relating to Pathological Demand Avoidance are listed on our website as they become available. The PDA Society will be continuing to encourage collaboration by hosting a 'research hub' to keep the community in touch with developments. If you are a researcher with an interest in this area, please get in touch to find out more.

Summary of Understanding of E/PDA

Extreme /’Pathological’ Demand Avoidance This article addresses the topics of debate and controversy that exist surrounding the classification of extreme/’pathological’ demand avoidance as a profile of the autism spectrum. A comprehensive overview of the existing and ongoing areas of research is given. There is discussion of the behavioural traits displayed by individuals with a more classic profile ASD profile compared to those with the extreme/’pathological’ demand avoidant profile. Examples of some of the challenging behaviour that can be displayed by individuals with this profile are given. The unique challenges faced by care providers and schools are highlighted. Ongoing work comparing extreme/’pathological’ demand avoidance to other behavioural profiles such as oppositional defiant disorder (ODD) and conduct disorder (CD) is discussed. Areas of overlap between these behavioural profiles and extreme/’pathological’ demand avoidance are explored and the differences recognised. The dimensional nature of extreme/’pathological’ demand avoidance and its’ similarities to a more female-typical ASD presentation is discussed. The paper concludes with descriptions of management strategies that can help children with the extreme/’pathological’ demand avoidant profile of autism. Ongoing research is needed into the recognition and diagnosis of extreme/ ‘pathological’ demand avoidance. The need to raise awareness was discussed.   Authors: Liz O'Nions, Francesca Happé and Essi Viding First published: British [...]

Summary of research developments

This summary was prepared by Dr. Liz O’Nions, Post-doctoral Fellow at the Parenting and Special Education Research Unit, KU Leuven, Belgium. It relates to the work done up until April 2016. Early research on PDA was carried out by Elizabeth Newson and colleagues and published through conference proceedings and informal channels. The research literature remains small at present. However, interest is growing, and PDA is beginning to attract international attention. Recent work has led to some helpful developments: Development of ways to quantify PDA features – The ‘Extreme Demand Avoidance Questionnaire’ was developed to quantify PDA features based on parent report, with the aim of identifying individuals at high risk of exhibiting the PDA profile for research purposes (O’Nions et al., 2014). More recently, work has been undertaken in collaboration with Dr. Judith Gould to revisit existing items within the Diagnostic Interview for Social and Communication Disorders (DISCO). The aim was to identify which items appear most specific to PDA, compared to the rest of the autism spectrum. This analysis identified eleven DISCO items that appear very distinctive to the PDA profile (O’Nions et al., 2015). More information is available in the research paper, which is available open access and can be downloaded [...]

Title: An exploration into the experiences of school aged children with a demand avoidant profile of autism

Keywords: Autism, Pathological Demand Avoidance, Extreme Demand Avoidance, PDA, Education  Author: Amelia Green   Summary  This paper is by Amelia Green, a master’s student at the University of Birmingham, and dives into the challenges faced by school aged children with PDA. Based on feedback from over 1,000 parents and young people, her findings shed light on the experiences of PDA children and their families and the urgent need for change, including: Struggles with school attendance, exclusions, and lack of support.  The importance of EHCPs that accurately reflect needs.  How a formal PDA diagnosis can help secure the right support.  Read paper Find out more  PDA Society Information Sheet for Teaching Professionals The educational experiences of autistic children with and without extreme demand avoidance behaviours. By C. Truman et al (2021).   Mapping the educational experiences of children with pathological demand avoidance. By E. Langton and N. Frederickson (2016)  

Tool to support diagnosis of ASD / PDA / Attachment disorders

Modification of the Coventry Grid Interview to include the Pathological Demand Avoidant profile The Coventry Grid Interview was designed to be used by clinicians as part of a comprehensive assessment process and not as a stand-alone diagnostic tool. There is often diagnostic confusion over the differences between children presenting with autism and those with attachment disorders and some children have both. This paper adds further to the Coventry Grid Interview by including items which might help to identify children with a Pathological (or Extreme) Demand Avoidant profile.   Authors: Judy Eaton, Kathryn Duncan and Ellen Hesketh Published: Good Autism Practice Journal, 2018   View article  

An assessment pathway for children

Developing a multi-agency assessment pathway for children and young people thought to have a Pathological Demand Avoidance profile Editorial comment: "Lisa Summerhill is the Lead Clinical Psychologist working in a specialist autism assessment service provided by the NHS. Kate Collett is the coordinator of the specialist post diagnostic autism team provided by the Local Authority. In this paper, they present the case for setting up an assessment pathway for children thought to fit the profile of Pathological Demand Avoidance (PDA). They were responding to increasing demands for PDA assessments and wanted to clarify the best course of action to support children who were often already diagnosed with autism but who were challenging schools and families. The authors are cautious about applying yet another label and strongly believe in assessment through intervention, that is, to observe a child’s response to strategies and engage regularly with all concerned to discuss next steps. They would like to conduct further research on the effectiveness of the approaches used so that they can build on the expertise within Solihull on understanding and managing children who are often described as challenging and complex and who have been excluded from school."   Authors: Lisa Summerhill and Kate Collett Published: Good [...]

Pathological Demand Avoidance: symptoms but not a syndrome

Pathological Demand Avoidance: symptoms but not a syndrome Summary Pathological (or extreme) demand avoidance is a term sometimes applied to complex behaviours in children within—or beyond—autism spectrum disorder. The use of pathological demand avoidance as a diagnosis has, at times, led to altered referral practice and misunderstandings between professionals and the families of patients. In our Viewpoint, we reviewed the current literature and conclude that the evidence does not support the validity of pathological demand avoidance as an independent syndrome. Nevertheless, the use of the term highlights an important known range of co-occurring difficulties for many children with autism spectrum disorder that can substantially affect families. We explore how these difficulties can best be understood through understanding of social, sensory, and cognitive sensitivities in autism spectrum disorder, identification of frequently occurring comorbid conditions, and assessment of how these problems interact within the child's social environment. Such understanding should then inform individualised management strategies for children and families, and in social settings, such as education. It is crucial that a shared understanding is achieved between professionals and families in this area.   Authors: Jonathan Green, Michael Absoud, Victoria Grahame, Osman Malik, Emily Simonoff, Ann Le Couteur, Gillian Baird Published: The Lancet Child & Adolescent Health, [...]

Correspondence: Demand avoidance is not necessarily defiance

Correspondence: Demand avoidance is not necessarily defiance Jonathan Green and colleagues have usefully outlined possible mechanisms that might represent vulnerability factors promoting habitual avoidance of routine demands in autism spectrum disorder and other developmental disabilities. However, we are concerned that conceptualising pathological (or extreme) demand avoidance as a set of comorbidities, including oppositional defiant disorder, could encourage the automatic use of reinforcement based approaches to alter the child’sresponse to demands, since these strategies form the core of parenting interventions for disruptive behaviour disorders in general. Instead, we argue for much-needed research to establish what interventions are most effective for problematic demand avoidance in autism spectrum disorder. A large body of research suggests that for disruptive children without developmental disabilities, avoidance is typically motivated by the reward of not having to engage with demands. Although reward-driven problem behaviour occurs in developmental disabilities in contexts in which parents are distracted, numerous reports suggest that avoidance of demands is often driven by an aversion to complying. In such cases, it appears that demands have become conditioned stimuli signalling threat and are experienced as sufficiently aversive to reinforce attempts to terminate them via a repertoire including distraction, diversion, and severe problem behaviour (e.g., harm to [...]

The Extreme Demand Avoidance Questionnaire (EDAq)

The ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q) was developed to measure behaviours reported in clinical accounts of extreme/‘pathological’ demand avoidance (PDA). The questionnaire allowed these traits to be measured consistently for research purposes. The EDA-Q should not be considered a diagnostic test. In the study of parent-reported behaviours in children and adolescents, for children aged 5 to 11 a score of 50 and over, and for children aged 12 to 17 a score of 45 and over, indicated an elevated risk of parents reporting that the child had been clinically identified as having a profile resembling PDA.   However a lower score would not necessarily preclude PDA from being a factor, especially when presentations may be more subtle (e.g. where aggression may be less of a factor or where avoidant traits may be less ‘overt’). PDA is dimensional (meaning that it impacts different people in different ways and in different environments) so the EDA-Q score should be interpreted dimensionally rather than as a formal 'cut off' point.   Liz O'Nion's website   For further information A description of how the measure was developed and the preliminary validation of it can be found here. Please also see the May 2021 adaptation of the EDA-Q called the EDA-8. It is [...]

Development of the ‘Extreme Demand Avoidance Questionnaire’

Development of the 'Extreme Demand Avoidance Questionnaire' (EDA-Q): Preliminary observations on a trait measure for Pathological Demand Avoidance This paper provides in-depth information about the development of ‘The Extreme Demand Avoidance Questionnaire’ (EDA-Q). It was published in 2013; a time when the awareness of PDA was increasing amongst professionals. The purpose of this study was to develop and test the validity of the EDA-Q. This was a relatively new questionnaire-measure of extreme demand avoidance. The aim was to quantify the extent to which a child displays PDA features based on parent-reported information. It was concluded that the EDA-Q was a potentially useful research tool (rather than a diagnostic tool) for identifying the PDA profile. Although aimed at professionals, this paper would be useful to parents who may have experience of the EDA-Q and would like to research its validity and origins.   Authors:  Elizabeth O’Nions, Phil Christie, Judith Gould, Essi Viding & Francesca Happé First published online:  Journal of Child Psychology and Psychiatry, 7th October 2013   View paper   View on Wiley  

Identifying features of ‘PDA’ using the Diagnostic Interview (DISCO)

Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO) This paper discusses the Diagnostic Interview for Social and Communication Disorders (DISCO) and existing items within the model which are more specific to PDA when compared to the rest of the autism spectrum. It is aimed at professionals and individuals who would like to find out more about diagnosing autism and PDA using the DISCO. The study identified eleven DISCO items that were PDA specific. A subset of individuals featuring a high number of DISCO PDA items were identified. Characteristics of individuals within this group were consistent with those previously described by Elizabeth Newson and colleagues. The paper highlights the requirement for a clinician-rated measure of PDA features and further elucidation of the PDA phenotype. Authors: Elizabeth O’Nions, Judith Gould, Phil Christie, Christopher Gillberg, Essi Viding and Francesca Happé First published online: 30th July 2015 in The European Child and Adolescent Psychiatry Journal   View paper View supplementary materials

Diagnostic tool: poster presentation

Features of Pathological Demand Avoidance Identified Using the Diagnostic Interview for Social and Communication Disorders (‘DISCO’) This is a concise, diagrammatic summary of the original research paper. The aims of the original study were two-fold: to identify items of the DISCO that measure features of PDA most likely to discriminate PDA from the rest of the autism spectrum, and to examine the behavioural profile of a subset of individuals with a PDA profile. Information collated from a previous parent-report study was used to identify the items of the DISCO that highly endorsed PDA. The sample group consisted of individuals who had been assessed by the DISCO. Eleven items were identified which included features such as ‘lack of co-operation’, ‘apparently manipulative behaviour’, ‘difficulties with other people’ and ‘repetitive acting out roles’. The PDA subset of the group had a very high endorsement of most of the items identified. It was found there was overlap for some key ASD features between PDA and the rest of the sample. Similar profiles of impairment relating to social interaction, communication, imagination and rigid, repetitive behaviours were found in both the PDA group and the rest of the sample. The behaviours commonly endorsed by the PDA group highlight the [...]

PDA Behavioural Features: poster presentation

Extreme/ ‘Pathological’ Demand Avoidance: An Examination of the Behavioural Features Using a Semi-Structured Interview This poster summarises a paper which examines the behavioural features associated with extreme/’pathological’ demand avoidance. Parents of children with an ASD diagnosis who displayed features of extreme /’pathological’ demand avoidance, were questioned using a semi-structured interview model. Difficulties were identified in the following areas: complying with demands and accepting limits, controlling behaviour, extreme behaviour, engagement in fantasy/ role play, avoidance strategies, poor social awareness and intense emotional lability. The findings of the paper recognised that extreme behaviours can create enormous difficulties for families and schools. It was emphasised that behavioural difficulties should be addressed properly with assessment so that potential management strategies can be identified to help each child.   Authors: Elizabeth O'Nions, Caroline Floyd, Emma Quinlan, Antonia San José Cáceres, Connie Pidgeon, Essi Viding and Francesca Happé. Presented: The International Meeting for Autism Research (IMFAR) 2016 and the European Association for Forenisc Child and Adolescent Psychiatry (EFCAP) 2016   View poster presentation    

PDA behavioural profile

Pathological demand avoidance: Exploring the behavioural profile The aim of this paper was to report the profiles of children diagnosed with Pathological Demand Avoidance (PDA) compared to children with Autism Spectrum Disorders (ASD), Conduct Problems (CPs) and Callous Un-emotional Traits (CUs).  The study addressed some of the controversy surrounding the PDA ‘label’ and whether PDA should be recognised as a syndrome distinct from these other disorders. Standardised parent-report indices of psychopathology were used to compare the behavioural traits of the individuals in each group. The results showed that the children fitting the PDA description displayed severe impairments across multiple domains. Levels of peer-related problems seen with PDA were comparable to ASD. Levels of anti-social traits and lack of pro-social behaviour in PDA were comparable to those with CP/CU. There is discussion regarding the various management strategies that can be successful for each group and the particular difficulties faced by those with features of PDA. Areas of further study were identified to elucidate the neurocognitive basis of the PDA profile and to investigate possible interventions.   Authors:  Elizabeth O’Nions, Essi Viding, Corina U Greven, Angelica Ronald and Francesca Happé First published Autism: The International Journal of Research and Practice, 2014, Vol. 18(5) 538–544   View paper  

Reflections on 2014 paper by O’Nions et al

Commentary: PDA – public display of affection or pathological demand avoidance? – reflections on O'Nions et al. (2014) This commentary piece contains a succinct summary of the history of Pathological Demand Avoidance (PDA). It is an interesting read for professionals and parents as it raises points for discussion regarding the incidence, nomenclature and classification of PDA. The author draws on his 40 years of experience as a professor of child and adolescent psychiatry to suggest that PDA presents along with a multitude of disorders including ADHD, anorexia nervosa and certain behavioural phenotype syndromes. He argues it ‘is not an extremely rare phenomenon’ and recognises that ‘PDA is already a very real clinical problem’. Recognition and praise is given to the development of the EDA-Q by Elizabeth O’Nions et al. Its use and value is discussed and the need for further research highlighted. The author suggests PDA is renamed ‘Extreme Demand Avoidance’ (EDA) to avoid confusion with ‘Public Displays of Affection’ and ‘because there can be no argument that the demand avoidance is extreme, but there will always be those who will have problems determining if the avoidance is pathological or not’.   Author:  Christopher Gillberg First published:  Journal of Child Psychology and Psychiatry, 3rd June 2014     View commentary    

Disorders in childhood: Overview for paediatricians

Behavioural and emotional disorders in childhood: A brief overview for paediatricians This is a review of all relevant published literature relating to behavioural, emotional and developmental problems in children and adolescents. It is intended as a guide for clinicians and aims to raise awareness of the importance of recognising and diagnosing problems early on in childhood. The paper contains clear descriptions of how childhood behavioural and emotional disorders present clinically and how they are diagnosed using the universally recognised Diagnostic and Statistical Manual version 5 (DSM-5). The Extreme Demand Avoidance Questionnaire (EDA-Q) is mentioned for its value in diagnosing PDA. Challenging Behaviours (CB) are recognised to have a significant impact on an individual’s learning and social opportunities. The paper highlights potential difficulties with schooling, sleeping, family and later professional life. The prevalence and aetiology of mental health issues amongst young people with behavioural and emotional issues is also discussed. Current guidance for diagnosing and managing children with behavioural and emotional disorders is reviewed. Included are descriptions of the interventions available along with an overview of appropriate medications.   Author: Michael O Ogundele First published: World Journal of Clinical Pediatrics, February 8th 2018   View paper