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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 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

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

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  

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

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  

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  

Dimensions of difficulty

Dimensions of difficulty in children reported to have an autism spectrum diagnosis and features of extreme pathological demand avoidance Background A subset of individuals with autism spectrum disorder (ASD) resemble descriptions of extreme/‘pathological’ demand avoidance, displaying obsessive avoidance of everyday demands and requests, strategic or ‘socially manipulative’ behaviour and sudden changes in mood. Investigating challenging presentations using dimensional description may prove preferable to identifying subgroups. However, there remains an imperative to explore which behavioural traits appear most problematic to inform quantitative investigation. This study provides an in-depth exploration of parent perspectives on maladaptive behaviour in children reported to have an autism spectrum diagnosis and features of extreme/‘pathological’ demand avoidance. Key Practitioner Message Children with ASD who resemble descriptions of extreme/‘pathological’ demand avoidance obsessively avoid complying with everyday demands, engage in apparently ‘manipulative’ behaviour and exhibit sudden changes in mood. We collected interview data from parents of children with ASD (parent-reported) and these features about their child’s maladaptive behaviour. Subtle differences emerged compared to previous accounts of this profile. These included additional problems relating to the child’s frequent attempts to control situations and others’ activities (e.g. by insisting that others abide by their rules or meet their demands). In our sample, avoidance behaviours could [...]

Measurement of Adult Traits

The Measurement of Adult Pathological Demand Avoidance Traits This paper reports two studies that were carried out to test the validity of the EDA-QA (Extreme Demand Avoidance Questionnaire for Adults) when screening for PDA in adults. Participants in the study were volunteers recruited from a variety of specialist online forums that focused on the needs and concerns of individuals with ASD. Participants completed either the short or full forms of the Autism Screening Questionnaire (ASQ). Scores were also collected from other recognised measures of behavioural and personality traits associated with ASD. The overlap of these scores with those from the EDA-QA were analysed and it was concluded that the EDA-QA can be used to screen for PDA. This paper is useful for professionals and individuals interested in the diagnostic pathways available for adults with PDA.   Authors: Vincent Egan, Omer Linenberg and Elizabeth O’Nions Published: Journal of Autism and Developmental Disorders, 2019   View paper  

Need for distinguishing PDA

Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders The aim of this paper was to gain recognition for pathological demand avoidance (PDA) as a separate entity within the Pervasive Developmental Disorders (PDDs) (now termed Autism Spectrum Disorders, ASD). Elizabeth Newson and colleagues had recognised a group of children experiencing significant behavioural difficulties but who did not align with the diagnostic criteria for a more classic presentation of autism or Asperger’s syndrome. Many of these children had been given the diagnosis of ‘PDD not otherwise specified’ which was confusing to parents and often resulted in the wrong management strategies being implemented. This paper explains the work undertaken by Newson to identify how the features displayed by children with PDA differ from others diagnosed with PDDs. The sample cohort used were children seen in her clinics and diagnosed with PDA between 1975 and 2000. An analysis of the features displayed by these children supported Newson’s argument for a separate diagnosis to be recognised. A follow-up study was carried out with a small group of children from the original group when aged 16-32. A parental questionnaire was used to examine the robustness of Newson’s descriptive criteria and measure outcomes in early [...]

Prevalence Study

Extreme (“pathological”) demand avoidance in autism: a general population study in the Faroe Islands A study was carried out to determine the frequency of Pathological Demand Avoidance (PDA) within a group of individuals identified as having met the diagnostic criteria for Autism Spectrum Disorder (ASD). This is a thought-provoking read for professionals and those interested in the diagnostic criteria for PDA. The entire population of 15 to 24 year olds living in the Faroe Islands were screened for ASD; 67 individuals met the diagnostic criteria. The parents of 50 of these individuals had been interviewed using the Diagnostic Interview for Social and Communication Disorders (DISCO). This tool contains 15 ‘PDA specific’ items. Nine individuals met criteria for ‘a possible clinical diagnosis of PDA’ meaning one in five of those with ASD had indications of having PDA in childhood. At the time of assessment only one individual with possible PDA still met the ‘full criteria’. The study found that PDA possibly constitutes a minority of all cases of ASD diagnosed in childhood but criteria for the condition are unlikely to be still met in later adolescence and early adult life.   Authors:  Christopher Gillberg, Carina Gillberg, Lucy Thompson, Rannvá Biskupsto and Eva Billstedt First published:  European [...]

Mapping educational experiences

Mapping the educational experiences of children with pathological demand avoidance This paper describes a study carried out to review the educational experiences of children with Pathological Demand Avoidance (PDA).  It would be of interest to those who work in the field of education and to parents who are navigating their way through the education system with a child who has PDA. The authors recognised that although clinical reports suggested children with PDA experienced significant difficulties in education, this had not been explored in a systematic way. Parents who believed their children to have PDA were asked to complete a questionnaire reporting on their children’s educational experiences. Their responses indicated that children with PDA display high levels of problem behaviours in school and receive corresponding high levels of special educational need support and professional involvement. The study found that even with high levels of support, the group of children with PDA experienced high rates of exclusion and placement breakdowns. Despite the difficulties indicated by parents’ responses, they tended to rate their child’s current placement fairly positively with an average ‘success’ rating of 6/10. Findings are discussed with reference to what is known about the educational experiences of children with more typical autism spectrum conditions and [...]

Adult diagnosis case study

Adult diagnosis of pathological demand avoidance – subsequent care planning In this paper, Eaton and Banting report on the diagnosis of a young woman in a low secure hospital, and the subsequent impact on her care. It highlights the need for those in residential and secure settings to be carefully assessed, as inappropriate formulations can lead to significant distress and increased behaviours that challenge. The paper describes the clinical features seen and the management strategies and psychological interventions that followed.   Authors: Judy Eaton, Rosie Banting Published: Journal of Learning Disabilities and Offending Behaviour, 7 September 2012   View paper

PDA and epilepsy case studies

Pathological Demand Avoidance in a population-based cohort of children with epilepsy: Four case studies The case studies described in this paper illustrate the complexity of neuro-developmental conditions, and the way in which multiple diagnoses can be manifest. It highlights the importance of all holistic assessments considering the possibility of demand avoidance and more specifically, a PDA profile.   Authors: Colin Reilly, Patricia Atkinson, Leanne Menlove, Christopher Gillberg, Elizabeth O’Nions, Francesca Happé, Brian G.R. Neville Published: Research in Developmental Disabilities, Volume 35, Issue 12, December 2014   View paper

A unhelpful label?

Pathological demand avoidance: What and who are being pathologised and in whose interests? Written from a social science/'critical autism study' perspective, this paper challenges the notion of PDA as a useful label. It suggests those identified may be young people who fail to conform to neuro-typical expectations and norms, and as a result are being labelled as 'wilfully disobedient' or having PDA. Viewing this as an example of a lack of understanding of the autistic mind, the paper also suggests that the demand avoidance could be seen as entirely rational from the perspective of the autistic individual, and with defiance being pathologised, young people are made 'vulnerable' to interventions by professionals. This paper asks some challenging questions which will be (and to some extent already have been) answered by research in other domains - that which explores the experiences of PDA adults and children, as well as more extensive clinician-led studies.   Author: Allison Moore Published: Global Studies of Childhood, February 28 2020 (Vol 10, Issue 1, 2020)   View paper  

Preventing School Exclusion

Preventing school exclusion: a case study of a primary aged autistic child with ADHD and a PDA profile This case study describes the initiatives that were adopted to help ‘Jack’, a 7 year old boy, avoid a third exclusion from school. Jack was diagnosed with autism and ADHD but he didn’t respond positively to strategies often used with autistic children. Jack struggled to maintain relationships with peers and found the demands of school life stressful. He displayed increasingly disruptive behaviour which lead to two temporary exclusions. Jack’s school contacted a local advisory teacher for autism who assessed him along with input from a paediatrician. He was diagnosed with Autism Spectrum Condition with Extreme Demand Avoidance (ASC/EDA). Following consultation with a range of agencies, adjustments were made to Jack’s school environment and the staff received additional Autism Awareness Training. His class teacher attended a specific EDA course. Jack has since started to thrive at school. The aim of this paper is to inform teaching professionals about the avoidance profile of autism and highlight useful adjustments that can be made within the school environment. Parents may also find it a useful resource as it’s an optimistic account of educating a child with additional needs.   Authors: Catrina [...]

Strategies case study

Helping your child with PDA to play: eight strategies for supporting a child with Pathological Demand Avoidance Syndrome at home This paper describes a case study of a young boy and the strategies that enabled him to learn skills while playing with others and developing positive relationships. The eight strategies described are: • The use of humour • Indirect praise • Thinking aloud • Flexibility and creativity • Tone of voice • Letting things go • Treating anger as communication • Positive relationships     Author: Josephine Carlile Published: Good Autism Practice, November 2011   View paper  

Child Behaviour & Parenting Strategies

The Child Behaviour and Parenting Strategies study was designed to investigate links between child behaviour and parenting strategies, as well as many other factors, with a particular focus on children with developmental disabilities such as autism spectrum disorder (ASD). This is an update on preliminary findings from the study, which was led by Dr Liz O’Nions, Prof. Ilse Noens (KU Leuven, Belgium) and Prof. Francesca Happé (King’s College London, UK). It describes PDA's research background, refers to the debate on whether it should be considered a sub-group or part of a continuum and makes suggestions for resolving the debates around diagnosis. Amid that context, the study provides some detailed and important material on demands in ASD, looking at why demands can be difficult and develops a theoretical model as to how avoidance may develop. It also describes the nature of adapted parenting and recognises the ways in which the parent's often find there is a particular turning point which enables them to help their child better.   Authors: Dr Liz O’Nions, Prof. Ilse Noens and Prof. Francesca Happé, 2019   View research update  

Title: Parental Evaluation of Educational Provision for Children with Pathological Demand Avoidance (PDA): A Qualitative Study (MEd Dissertation) 

Keywords: Autism, Pathological Demand Avoidance, Extreme Demand Avoidance, PDA, Parent Blame, Education  Author: Linda Lumsden    Summary  This is a dissertation by a masters student that explores how PDA children engage with learning. Using a combination of interviews and surveys alongside a review of published evidence, the paper helps us understand parent and carers perspectives on children’s experiences in education.  The research focuses on the importance of focusing support on the individual needs of children and families. Parents and carers also make the following recommendations for improving PDA children’s experience of education:  Professionals in school need more knowledge of PDA to be able to make adjustments around children.  There needs to be more cooperation between everyone in a child’s life to help manage the transition between home and school  Parents should be treated as experts in their children, and partners in their educational journey.    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)