PDA Research overviews

Title: What are the experiences and support needs of families of autistic children with Extreme (or ‘Pathological’) Demand Avoidance (E/PDA) behaviours?

Year Published: 2025

Keywords: Autism, Family Experiences, Pathological Demand Avoidance (PDA), Service Provision, Support Needs

Authors: Vincent Egan, Elinor Bull, and Grace Trundle

Summary:

This study explored how Pathological Demand Avoidance (PDA) in adults relates to other conditions, including ADHD and personality traits. Researchers used the EDA-QA, a self-report tool for adults with PDA traits, and analysed responses from individuals who self-identified as having PDA. Participants also completed surveys on personality and behaviour. Findings suggested that in the general adult population, PDA traits were more strongly linked to ADHD, emotional instability, and antagonism than to autism. The study also examined links between PDA and delinquency, suggesting that PDA’s association with rule-breaking behaviour may be due to these traits rather than autism itself. These results challenge some clinical perspectives, and the authors recommend further research in clinical settings to better understand PDA in adults.

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Title: An Exploration into the Experiences of School-Aged Children with a Demand Avoidant Profile of Autism

Year Published: 2024

Keywords: Autism, Education, Extreme Demand Avoidance, Pathological Demand Avoidance, PDA

Authors: Amelia Green

Summary:

This research, conducted by Amelia Green at the University of Birmingham, explores the challenges faced by school-aged children with Pathological Demand Avoidance (PDA). Based on input from over 1,000 parents and young people, the study highlights key issues affecting PDA children and their families.

Findings reveal significant struggles with school attendance, high exclusion rates, and a widespread lack of appropriate support. The study emphasises the need for Education, Health, and Care Plans (EHCPs) that accurately reflect a child’s specific needs. Additionally, it discusses the value of a formal PDA diagnosis in securing the right educational and therapeutic support. The research calls for urgent changes in how PDA is understood and managed within the education system, advocating for better recognition and tailored interventions to help children with PDA thrive.

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Title: Views and Experiences of Teachers Working with LGBT+ Pupils with SEND

Year Published: 2024

Keywords: Inclusive Education, Intersectionality, LGBT+, Pathological Demand Avoidance, PDA, SEND, Special Educational Needs, Teacher Perspectives

Authors: Klaudia Matasovska

Summary:

This peer-reviewed article explores the views and experiences of Special Educational Needs (SEN) practitioners working with LGBT+ pupils with SEND, including those with Pathological Demand Avoidance (PDA). Through one-to-one online interviews and a review of existing literature, the study highlights key challenges and areas for improvement in supporting this intersectional group.

The paper makes several recommendations:

• LGBT+ inclusion should be integrated into everyday school culture to ensure staff consistency in supporting LGBT+ SEND learners.
• Staff training in both mainstream and SEN settings is essential to reduce discrimination, stigma, and misconceptions.
• Relationships and Sex Education (RSE) guidance should be updated to include specific strategies for teaching LGBT+ content to SEND students.

Overall, the study calls for a more inclusive and accepting school environment to promote a sense of belonging for LGBT+ pupils with SEND, improving their educational experiences and well-being.

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

Year Published: 2023

Keywords: Autism, Education, Extreme Demand Avoidance, Parent Blame, Pathological Demand Avoidance, PDA

Authors: Linda Lumsden

Summary:

This dissertation explores how children with Pathological Demand Avoidance (PDA) engage with learning, using interviews, surveys, and a review of existing research to understand the perspectives of parents and carers. The study emphasises the importance of tailoring educational support to the individual needs of children and families.

Parents and carers made several key recommendations for improving the educational experience of children with PDA:

• Increased knowledge and training for school professionals to better support PDA students.
• Stronger collaboration between parents, teachers, and support services to improve home-school transitions.
• Recognising parents as experts in their children’s needs and valuing them as partners in their education.

The study highlights the challenges PDA children face in mainstream education and stresses the need for greater awareness and cooperation to create a supportive learning environment. It provides valuable insights for educators, policymakers, and families navigating PDA in education.

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Title: Mapping experiences of PDA in Ireland

Year Published: 2022

Keywords: Assessment, Autism, Education, Healthcare, Pathological Demand Avoidance (PDA), Support Strategies

Authors: Alison Doyle and Neil Kenny

Summary:

This national study gathered insights from PDA individuals, their families, and professionals to understand knowledge, diagnosis, and support for PDA. Researchers surveyed 264 parents, 9 life partners, 6 PDA individuals, and 54 practitioners. They also conducted interviews and focus groups. The findings highlight the need for a flexible, informed, and personalised approach to assessing and supporting PDA individuals. Practitioners emphasised the importance of a streamlined, multi-disciplinary system. The study also found a major gap between education and healthcare services, calling for fairer access to support. Addressing these challenges could improve outcomes for individuals and families.

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 information sheets for professionals and parents which were developed following the recommendations of this study

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Title: Extreme Demand Avoidance 8-Item Measure (EDA-8)

Year Published: 2021

Keywords: Autism, Caregiver Report, Extreme Demand Avoidance (EDA), Pathological Demand Avoidance (PDA), Questionnaire

Authors: Dr. Liz O’Nions et al.

Summary:

The EDA-8 is a shorter version of the Extreme Demand Avoidance Questionnaire (EDA-Q), first developed in 2013 by Dr. Liz O’Nions and colleagues. The original EDA-Q measured caregiver-reported behaviours linked to Extreme or Pathological Demand Avoidance (PDA) in autistic children aged 5-17. It was created for research, not diagnosis. In 2021, the EDA-Q was refined into the EDA-8, an 8-item measure that focuses on the most consistent traits of PDA. Less reliable items, such as those influenced by age, gender, or independence, were removed. The EDA-8 is designed for research purposes and has not yet been tested in clinical settings.

Link to articles:

• 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: 

No clinician-rated instrument for identifying a PDA profile has yet been developed and tested. However, a range of tools have been developed for research purposes which can be a helpful aid for practitioners exploring a PDA profile. The EDA-8 is one such tool with other tools listed in section ‘4.3. Diagnostic Tools’ of our ‘Practice Guidance for Identifying and Assessing a PDA profile’.

The EDA-8 asks about a person’s presentation not the causation of this presentation. There are a range of reasons why a person may present with extreme demand avoidance besides PDA. Therefore, a high score on the measure does not in itself indicate a PDA profile. More in-depth assessment is needed to establish whether a PDA profile is underpinning demand avoidance behaviours. This would consider early development and take into account any situational factors affecting current behaviour.

The questionnaire is intended for use by researchers wanting to measure extreme demand avoidance traits.

*The PDA Society is not able to verify the accuracy of translations listed on our website.

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

Year Published: 2021

Keywords: Assessment, Autism, Caregiver Report, EDA-8, Extreme Demand Avoidance (EDA), Pathological Demand Avoidance (PDA)

Authors: Elizabeth O’Nions, Francesca Happé, Essi Viding & Ilse Noens

Summary:

This study presents the EDA-8, a shorter and more refined version of the Extreme Demand Avoidance Questionnaire (EDA-Q). The EDA-8 is designed for researchers and professionals assessing neurodevelopmental conditions. Unlike the original EDA-Q, it does not include a cut-off score, making it more adaptable. While not intended for diagnosis, it may help identify children who need further assessment for Pathological Demand Avoidance (PDA) traits. The EDA-8 aims to improve understanding of demand-avoidant behaviours in autistic children and support better research and assessment approaches.

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Title: Pathological Demand Avoidance in Children and Adolescents: A Systematic Review

Year Published: 2021

Keywords: Anxiety, Autism, Avoidant Behaviour, Pathological Demand Avoidance (PDA), Research Development, Trauma

Authors: Kildahl, Helverschou, Rysstad, Wigaard, Hellerud, Ludvigsen, and Howlin

Summary:

This paper provides an overview of the research history of Pathological Demand Avoidance (PDA) and highlights areas where further study is needed. Research on PDA is still in its early stages due to limited funding, and more work is required to determine how useful the concept is. The review emphasises the importance of longitudinal studies to track avoidant behaviours over time, as well as research into the role of anxiety, trauma, and environmental factors in PDA. Although the review predates key clinically based research (such as Eaton and Weaver), it reinforces the need for systematic studies to assess whether PDA as a concept leads to better outcomes. The authors stress that continued research is essential to understand and validate PDA’s role in diagnosis and intervention.

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Title: The Educational Experiences of Autistic Children With and Without Extreme Demand Avoidance Behaviours

Year Published: 2021

Keywords: Autism, Educational Support, Extreme Demand Avoidance (EDA), Parental Perspectives, Pathological Demand Avoidance (PDA), School Experiences

Authors: Clare Truman, Laura Crane, Patricia Howlin & Elizabeth Pellicano

Summary:

This study explores the school experiences of autistic children with and without Extreme Demand Avoidance (EDA) behaviours. Using an online survey, 211 parents shared insights into their children’s education. The study grouped children into three categories: those diagnosed with PDA (AUT-PDA), those without a PDA diagnosis but displaying EDA behaviours (AUT-EDA), and those with neither (AUT). Findings showed that children with EDA behaviours, particularly those with PDA, exhibited more challenging behaviours in school. However, school exclusions occurred across all groups, highlighting broader concerns about how autistic students are supported. Parents reported overwhelmingly negative school experiences, often attributing them to a lack of understanding of their child’s needs and insufficient targeted support. The study emphasises the importance of better recognition and support for autistic children with EDA traits to improve their educational experiences.

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Title: An Unhelpful Label? Examining PDA from a Critical Perspective

Year Published: 2020

Keywords: Autism, Diagnosis, Neurodiversity, Pathological Demand Avoidance, Pathologization, PDA, Social Science

Authors: Allison Moore

Summary:

This paper challenges the usefulness of Pathological Demand Avoidance (PDA) as a diagnostic label from a social science and critical autism studies perspective. It argues that PDA may pathologize behaviours that are simply nonconforming to neurotypical expectations rather than indicative of a distinct disorder.

The author suggests that demand avoidance may be a rational response for autistic individuals, rather than a sign of defiance or disorder. Labelling young people as having PDA, the paper argues, risks reinforcing misunderstandings about autism and making them vulnerable to unnecessary interventions. It calls for a re-examination of how PDA is framed and whether it reflects a genuine clinical need or a failure to understand autistic behaviours.

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Title: Editorial, commentaries and responses on the paper ‘Role of Intolerance of Uncertainty and Anxiety in Extreme Demand Avoidance’

Year Published: 2020

Keywords: Anxiety, Autism, Child Mental Health, Demand Avoidance, Pathological Demand Avoidance, PDA, Uncertainty

Authors: Lisa Stuart, Victoria Grahame, Emma Honey, Mark Freeston, Jonathan Green, Richard Woods, Ann Ozsivadjian

Summary:

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Title: Extreme/Pathological Demand Avoidance: An Overview

Year Published: 2020

Keywords: Anxiety, Autism, Avoidance Behaviours, Clinical Presentation, Educational Strategies, Pathological Demand Avoidance (PDA)

Authors: Elizabeth O’Nions & Judith Eaton

Summary:

This article provides an overview of Pathological Demand Avoidance (PDA), focusing on how it presents in autistic children. The authors discuss key differences between children with a PDA profile and those with attachment difficulties. They explore how anxiety-driven avoidance of everyday demands can develop and highlight strategies to help reduce avoidance behaviours. These include creating positive routines that gradually increase a child’s tolerance for demands while avoiding reinforcement of avoidance behaviours. The article emphasises that recognising the PDA profile can help caregivers and educators better understand and support autistic children who struggle with daily requests. While PDA is not a standalone diagnosis, describing its traits can improve care and educational approaches for affected children.

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Title: An Exploration of the PDA Profile in Children

Year Published: 2020

Keywords: ADOS-2, Attachment Difficulties, Autism, Developmental History, Diagnostic Assessment, Pathological Demand Avoidance (PDA)

Authors: Judy Eaton & Kaylee Weaver

Summary:

This study examines the characteristics of children referred for autism assessments, focusing on those with a Pathological Demand Avoidance (PDA) profile. Researchers analysed data from 351 children assessed between 2015 and 2017 at Dr. Judy Eaton’s clinic. The first part of the study compared ADOS-2 (Autism Diagnostic Observation Schedule) scores between children diagnosed with autism and those diagnosed with autism plus a PDA profile. The second part explored developmental history themes in autistic children with PDA versus non-autistic children with attachment difficulties. Findings showed distinct behavioural patterns in children with PDA, some of which had not been previously documented. While the study does not claim PDA is a separate diagnosis, it adds to the evidence suggesting PDA presents as a unique behavioural profile. Further research is needed to understand its relationship to autism and other conditions.

Help for Psychology has also written this summary.

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Title: Individual Differences, ADHD, Adult Pathological Demand Avoidance, and Delinquency

Year Published: 2020

Keywords: ADHD, Autism, EDA-QA, Forensic Psychology, Pathological Demand Avoidance (PDA)

Authors: Vincent Egan, Elinor Bull, and Grace Trundle

Summary:

This study explored how Pathological Demand Avoidance (PDA) in adults relates to other conditions, including ADHD and personality traits. Researchers used the EDA-QA, a self-report tool for adults with PDA traits, and analysed responses from individuals who self-identified as having PDA. Participants also completed surveys on personality and behaviour. Findings suggested that in the general adult population, PDA traits were more strongly linked to ADHD, emotional instability, and antagonism than to autism. The study also examined links between PDA and delinquency, suggesting that PDA’s association with rule-breaking behaviour may be due to these traits rather than autism itself. These results challenge some clinical perspectives, and the authors recommend further research in clinical settings to better understand PDA in adults.

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Title: Parenting Strategies in ASD

Year Published: 2019

Keywords: Accommodations, Autism Spectrum Disorder (ASD), Parenting Strategies, PDA Profile, Problem Behaviour, Reinforcement

Authors: Elizabeth O’Nions, Eva Ceulemans, Francesca Happé, Paul Benson, Kris Evers, Ilse Noens

Summary:

This study examines how parents of autistic children, including those with a Pathological Demand Avoidance (PDA) profile, adapt their parenting strategies. Researchers used the ‘Parenting Strategies Questionnaire’ to assess how parents manage challenging behaviours. Findings show that parents of autistic children with problem behaviours are more likely to accommodate their child’s needs by making adjustments or reducing uncertainty. Interestingly, the study found no significant differences in the use of discipline, rewards, or reinforcement strategies based on the child’s behaviour. This research is one of the first to highlight how parents naturally adjust their approaches based on their child’s unique behavioural profile. Understanding these adaptations may help improve parenting support for families of autistic children.

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Title: The Role of Intolerance of Uncertainty and Anxiety in Extreme Demand Avoidance

Year Published: 2019

Keywords: Anxiety, Autism Spectrum Disorder (ASD), Clinical Implications, Demand Avoidance, Intolerance of Uncertainty (IU), Pathological Demand Avoidance (PDA)

Authors: Lisa Stuart, Victoria Grahame, Emma Honey, Mark Freeston

Summary:

This study explores how intolerance of uncertainty (IU) and anxiety may explain extreme demand avoidance (PDA) in children and adolescents. Researchers from the NHS and Newcastle University examined how these factors contribute to demand-avoidant behaviours. The findings suggest that IU-a difficulty in coping with unpredictability-may be a key factor driving PDA behaviours in autistic children. This research builds on previous autism studies and has important clinical implications. Understanding the link between IU, anxiety, and demand avoidance could help improve assessment and management strategies for children with a PDA profile.

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Title: Progressing the Research on PDA

Year Published: 2019

Keywords: Academic Collaboration, Autism, Demand Avoidance, Pathological Demand Avoidance, PDA, Research

Authors: PDA Society

Summary:

Pathological Demand Avoidance (PDA) is widely considered part of the autism spectrum, but research in this area is still developing. There are different viewpoints, and more high-quality studies are urgently needed. Researchers need to better understand both autism and demand avoidance, identify effective support strategies, and establish clear ways to describe the PDA profile.

In early 2019, the PDA Society hosted a research meeting with academics and other experts from the UK and Ireland. The event allowed researchers to share their latest findings, discuss key ideas, and identify the most important research priorities. The goal was to build a shared understanding and focus on practical ways to support individuals with PDA. All 31 participants agreed that the meeting was valuable and productive. More collaboration and research are needed to improve knowledge and support for those with PDA.

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Title: Understanding Extreme/Pathological Demand Avoidance (E/PDA)

Year Published: 2019

Keywords: Autism, Behavioural Challenges, Conduct Disorder, Demand Avoidance, Education, ODD, Oppositional Defiant Disorder, Pathological Demand Avoidance, PDA, Support Strategies

Authors: Liz O’Nions, Francesca Happé, and Essi Viding

Summary:

This article explores the debate around whether extreme/pathological demand avoidance (E/PDA) is part of the autism spectrum or a separate condition. It provides an overview of current research and compares behaviours seen in classic autism with those in individuals with a strong demand avoidant profile. The paper describes challenging behaviours linked to E/PDA and the difficulties faced by caregivers and schools.

The research also examines similarities and differences between E/PDA, Oppositional Defiant Disorder (ODD), and Conduct Disorder (CD). While some behaviours overlap, E/PDA appears distinct. The article discusses how E/PDA may resemble a “female-typical” autism presentation, where symptoms can be harder to recognise. Finally, the paper outlines strategies for managing E/PDA behaviours and stresses the need for more research on recognition, diagnosis, and support. Raising awareness is crucial to improving understanding and intervention for individuals with E/PDA.

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Title: The Measurement of Adult Pathological Demand Avoidance Traits

Year Published: 2019

Keywords: Adult Diagnosis, Autism, Behavioural Assessment, EDA-QA, Pathological Demand Avoidance, PDA, Screening Tools

Authors: Vincent Egan, Omer Linenberg, Elizabeth O’Nions

Summary:

This paper examines the validity of the Extreme Demand Avoidance Questionnaire for Adults (EDA-QA) as a screening tool for identifying Pathological Demand Avoidance (PDA) traits in adults. Two studies were conducted using participants recruited from online forums focused on autism-related topics.

Participants completed either the full or short form of the Autism Screening Questionnaire (ASQ), alongside other recognised measures of behavioural and personality traits linked to autism spectrum disorder (ASD). The study analysed the overlap between these scores and EDA-QA results, concluding that the EDA-QA can effectively screen for PDA traits in adults.

This research is valuable for professionals working in adult autism assessments and individuals seeking diagnostic pathways for PDA. It highlights the need for further investigation into PDA in adulthood and the development of clinical tools to support accurate identification and intervention.

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Title: Developing an Assessment Pathway for Children with a Pathological Demand Avoidance Profile

Year Published: 2018

Keywords: Assessment Pathway, Autism, Education, Intervention Strategies, Multi-Agency Support, Pathological Demand Avoidance, PDA

Authors: Lisa Summerhill and Kate Collett

Summary:

This paper discusses the need for a structured assessment pathway for children suspected to have a Pathological Demand Avoidance (PDA) profile. Lisa Summerhill, a Lead Clinical Psychologist, and Kate Collett, a post-diagnostic autism team coordinator, highlight the increasing demand for PDA assessments and the challenges faced by schools and families.

The authors emphasise a cautious approach to labelling, advocating for “assessment through intervention.” This means observing how children respond to different support strategies rather than relying solely on formal diagnoses. They stress the importance of regular collaboration between professionals, families, and educators to guide next steps. The paper also calls for further research to evaluate the effectiveness of current approaches and improve understanding of children who are often seen as complex and challenging. The authors aim to build on expertise in Solihull to better support these children and prevent school exclusions.

View journal article.

View Solihull Children’s Community Therapies’ PDA page.

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Title: Preventing School Exclusion: A Case Study of a Primary-Aged Autistic Child with ADHD and a PDA Profile

Year Published: 2018

Keywords: ADHD, Autism, Classroom Strategies, Education, Inclusion, Pathological Demand Avoidance, PDA, School Exclusion

Authors: Catrina Lyle, Heather Leatherland

Summary:

This case study details the support strategies used to prevent a third school exclusion for Jack, a 7-year-old boy diagnosed with Autism Spectrum Condition (ASC) and ADHD, later identified as having an Extreme Demand Avoidance (EDA) profile. Despite traditional autism strategies, Jack struggled with peer relationships, found school demands overwhelming, and exhibited disruptive behaviours that led to two temporary exclusions.

With guidance from an autism advisory teacher and a paediatrician, Jack’s school implemented key adjustments, including modifying the school environment and providing staff with specialised autism and EDA training. These changes helped Jack thrive in school.

The study highlights practical interventions that can support autistic students with demand avoidance traits and provides an optimistic perspective for educators and parents. It emphasises the importance of individualised approaches and collaboration to prevent school exclusion and ensure a positive learning experience.

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Title: Commentary: Conceptualising Demand Avoidance in an ASD Context – A Response to Osman Malik & Gillian Baird (2018)

Year Published: 2018

Keywords: Autism, Behavioural Assessment, Clinical Framework, Demand Avoidance, Diagnosis, ODD, Pathological Demand Avoidance, PDA

Authors: Elizabeth O’Nions, Ilse Noens

Summary:

This response to Malik and Baird (2018) continues the discussion on how to understand and conceptualise Pathological Demand Avoidance (PDA) within autism. O’Nions and Noens agree on the importance of exploring the underlying causes of demand avoidance in clinical settings, considering factors such as environmental context, specific triggers, and the mechanisms that reinforce these behaviours.

However, they caution against using co-occurring conditions, such as Oppositional Defiant Disorder (ODD), to describe PDA-like behaviours. They argue that this could lead to the use of reinforcement-based interventions that may not be appropriate for children with PDA. Instead, they stress the need for a nuanced understanding of demand avoidance that considers the complexities of autism-related difficulties. The paper highlights the risk of misinterpretation and emphasises the need for tailored, individualised approaches to support children effectively.

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Title: Commentary: Conceptualising Demand Avoidance

Year Published: 2018

Keywords: Autism, Behavioural Challenges, Conceptual Framework, Demand Avoidance, Diagnosis, Pathological Demand Avoidance, PDA

Authors: Osman Malik, Gillian Baird

Summary:

This commentary by Malik and Baird discusses the challenges of defining and diagnosing Pathological Demand Avoidance (PDA). It responds to O’Nions et al.’s 2017 paper, Dimensions of Difficulty in Children with Autism and Extreme Demand Avoidance, by emphasising the need to look beyond demand avoidance itself and consider its underlying causes.

The authors argue that using PDA as a distinct label may be unhelpful, as it could overlook the complex factors driving these behaviours. They suggest that identifying and addressing the child’s specific difficulties-such as anxiety, sensory sensitivities, or difficulties with flexibility-may be more beneficial than applying a PDA diagnosis. The paper raises concerns that the PDA label could lead to misunderstandings and potentially limit effective interventions. Instead, they advocate for a broader, needs-based approach to assessment and support for children displaying extreme demand avoidance.

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Title: Behavioural and Emotional Disorders in Childhood: An Overview for Paediatricians

Year Published: 2018

Keywords: Behavioural Disorders, Child Development, Diagnosis, DSM-5, Emotional Disorders, Intervention, Pathological Demand Avoidance, PDA

Authors: Michael O. Ogundele

Summary:

This paper provides a comprehensive review of behavioural, emotional, and developmental disorders in children and adolescents. It is designed as a guide for clinicians, emphasising the importance of early recognition and diagnosis. The paper explains how these disorders present clinically and are diagnosed using the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5).

The Extreme Demand Avoidance Questionnaire (EDA-Q) is highlighted for its role in identifying Pathological Demand Avoidance (PDA). The paper discusses the impact of challenging behaviours on a child’s education, sleep, family life, and future career opportunities. It also examines the prevalence and causes of mental health issues in children with behavioural difficulties. Current recommendations for diagnosis and management are reviewed, including available interventions and medications. The study underscores the need for tailored support strategies to improve long-term outcomes for children with these challenges.

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Title: Pathological Demand Avoidance: Symptoms but Not a Syndrome

Year Published: 2018

Keywords: Autism, Behavioural Challenges, Co-occurring Conditions, Diagnosis, Individualised Support, Pathological Demand Avoidance, PDA

Authors: Lisa Summerhill and Kate Collett

Summary:

This article examines whether Pathological Demand Avoidance (PDA) should be considered a separate syndrome or simply a set of complex behaviours within or beyond autism. The authors review existing research and conclude that there is not enough evidence to classify PDA as an independent condition.

However, the term PDA does highlight real challenges faced by many children with autism, particularly in managing social, sensory, and cognitive sensitivities. The paper stresses the importance of recognising frequently co-occurring conditions and understanding how these factors interact with a child’s environment. Instead of focusing on PDA as a diagnosis, the authors advocate for individualised management strategies tailored to each child’s needs. They emphasise the need for strong collaboration between professionals and families to develop effective support, particularly in education and daily life. Clear communication and shared understanding are essential to improving outcomes for children and their families.

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Title: Tool to Support Diagnosis of ASD, PDA, and Attachment Disorders

Year Published: 2018

Keywords: Attachment Disorders, Autism, Clinical Assessment, Coventry Grid Interview, Diagnosis, Pathological Demand Avoidance, PDA

Authors: Judy Eaton, Kathryn Duncan, Ellen Hesketh

Summary:

This paper discusses updates to the Coventry Grid Interview, a tool used by clinicians to help assess children with autism and attachment disorders. Diagnosing these conditions can be difficult, as they sometimes show overlapping behaviours, and some children may have both. The paper introduces modifications to the Coventry Grid Interview to include indicators for Pathological Demand Avoidance (PDA).

These updates aim to help professionals better recognise PDA traits and distinguish them from autism and attachment disorders. However, the Coventry Grid Interview is not a stand-alone diagnostic tool but is meant to be used as part of a full clinical assessment. The paper highlights the importance of accurate diagnosis to ensure children receive the right support. This addition to the assessment process could improve understanding and help tailor interventions for children with PDA.

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Title: Emotion Regulation and Executive Function in Autism and PDA (PhD thesis)

Year Published: 2018

Keywords: Autism, Child Development, Clinical Psychology, Emotion Regulation, Executive Function, Pathological Demand Avoidance, PDA

Authors: Anna Goodson

Summary:

This research explores how children with Autism Spectrum Disorder (ASD) and Pathological Demand Avoidance (PDA) traits manage emotions and problem-solving skills. It reviews studies on how well children with ASD control their emotions compared to those without ASD. The findings show that children with ASD often have more difficulty handling emotions.

The study is also the first to look at how executive function (EF)-the ability to plan, focus, and control impulses-relates to PDA behaviours. It finds that children with ASD and PDA traits have more EF difficulties than children without ASD. This suggests that struggles with EF may contribute to demand avoidance behaviours. The research highlights the need to consider what kind of task a child is avoiding and what EF skills are required to complete it. The findings emphasise the importance of tailored support strategies to help children and families manage these challenges.

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Title: Autism, PDA Presentations, and Theory of Mind (PhD thesis)

Year Published: 2018

Keywords: Autism, Behaviour, Child Development, Clinical Psychology, Pathological Demand Avoidance, PDA, Theory of Mind

Authors: Ellie Bishop

Summary:

This research explores how well children understand others’ thoughts and feelings, known as Theory of Mind (ToM). It compares children with and without Autism Spectrum Condition (ASC) and finds that stronger ToM skills are linked to lower aggression, especially in younger children. The study also shows that children with ASC generally have lower ToM abilities, and those with better ToM experience fewer difficulties with socialising and communication.

The research further examines Pathological Demand Avoidance (PDA), a behavioural pattern where children strongly resist demands. PDA traits are often linked to behavioural difficulties, stress for parents, and school challenges. However, this study finds no connection between PDA and ToM, suggesting that different factors cause PDA behaviours. The findings highlight the need for personalised support strategies and early recognition of PDA traits during autism assessments. This research contributes valuable insights into an area that requires further study and better understanding.

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Title: Demand Avoidance is Not Necessarily Defiance

Year Published: 2018

Keywords: Anxiety, Autism, Behaviour, Demand Avoidance, Intervention Strategies, Pathological Demand Avoidance, PDA

Authors: Elizabeth O’Nions, Francesca Happé, Essi Viding, Judith Gould, Ilse Noens

Summary:

This correspondence responds to Jonathan Green and colleagues’ discussion on demand avoidance in autism spectrum disorder (ASD). The authors caution against viewing extreme demand avoidance as a set of co-occurring conditions, such as oppositional defiant disorder (ODD), as this could lead to the use of reinforcement-based strategies designed for disruptive behaviours. Instead, they argue that avoidance in ASD is often driven by anxiety, not a desire for control.

They highlight research showing that some children with ASD experience demands as threatening, leading to extreme avoidance behaviours. Standard behaviour management techniques may escalate distress rather than help. Instead of labelling these behaviours as defiance, the authors emphasise the need for research into effective interventions that address anxiety-driven avoidance. They advocate for careful assessment and individualised support, rather than reactive responses that could worsen difficulties. Developing evidence-based strategies for managing demand avoidance in ASD is a key priority.

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Title: Differentiating Between Pathological Demand Avoidance and Antisocial Personality Disorder: A Case Study

Year Published: 2017

Keywords: Antisocial Personality Disorder, Diagnosis, Forensic Psychology, Misdiagnosis, Offending Behaviour, Pathological Demand Avoidance, PDA

Authors: Grace Trundle, Leam A. Craig, Ian Stringer

Summary:

This case study explores the differences between Pathological Demand Avoidance (PDA) and Antisocial Personality Disorder (ASPD), particularly in forensic settings where misdiagnosis can occur. The paper highlights how both conditions may present with overlapping behavioural traits, such as difficulties with authority, impulsivity, and manipulative behaviours.

However, the study underscores key differences, including the underlying causes of these behaviours. While PDA-related avoidance is often driven by anxiety and an overwhelming need for control, ASPD traits are typically rooted in persistent disregard for others and a lack of empathy. The research warns that professionals working with offenders who have personality disorders must be cautious to avoid conceptual confusion between these conditions. Recognising these distinctions is essential for ensuring that individuals receive appropriate support and intervention, rather than incorrect diagnoses that could lead to ineffective or even harmful management strategies.

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Title: Dimensions of Difficulty in Children with Autism and Extreme Pathological Demand Avoidance

Year Published: 2017

Keywords: Autism, Behavioural Challenges, Extreme Demand Avoidance, Intervention, Parent Perspectives, Pathological Demand Avoidance, PDA

Authors: Elizabeth O’Nions, Essi Viding, Caroline Floyd, Emma Quinlan, Connie Pidgeon, Judith Gould, Francesca Happé

Summary:

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Title: Excluded from School: Autistic Students’ Experiences of School Exclusion and Re-Integration

Year Published: 2017

Keywords: Autism, Education, Inclusion, Re-Integration, School Exclusion, Special Educational Needs

Authors: Janina Brede, Anna Remington, Lorcan Kenny, Katy Warren, Elizabeth Pellicano

Summary:

This study explores the experiences of autistic students who have been excluded from school and their subsequent attempts at re-integration. Despite the right to education and inclusion, autistic students-especially those with complex needs-are at a higher risk of school exclusion, which can negatively impact their well-being and future opportunities.

The research investigates key factors contributing to exclusion and the challenges faced by students, parents, and educators in re-integrating them into education. Findings highlight the need for better understanding, support strategies, and adjustments to ensure autistic students can remain in school. The study calls for more inclusive education policies and interventions that recognise the specific needs of autistic students, helping to prevent exclusion and support long-term educational success.

This paper is relevant to educators, policymakers, and families seeking to improve school experiences for autistic students.

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Title: Parents’ Experiences of Professionals’ Involvement for Children with Extreme Demand Avoidance

Year Published: 2016

Keywords: Autism, Demand Avoidance, Education, Healthcare, Parental Experiences, Pathological Demand Avoidance, PDA, Professional Support

Authors: Emma Gore Langton, Norah Frederickson

Summary:

This study examines parents’ experiences of working with professionals to support children with Pathological Demand Avoidance (PDA). PDA is characterised by an extreme difficulty in tolerating everyday demands, leading to avoidance behaviours often described as ‘socially manipulative.’ Children with PDA also display impulsivity, obsessive behaviours, and difficulties with social identity.

While awareness and research on PDA are gradually increasing, parents report ongoing struggles in getting their children’s needs recognised and properly addressed by health and education services. The study explores what parents value most in professional involvement, highlighting the importance of understanding, flexibility, and tailored support approaches. The findings emphasise the need for improved awareness and training among professionals to ensure families receive appropriate guidance and intervention. This research is particularly relevant for educators, clinicians, and policymakers looking to improve outcomes for children with PDA and their families.

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Title: PDA Behavioural Features: An Examination Using a Semi-Structured Interview

Year Published: 2016

Keywords: Assessment, Autism, Behavioural Features, Demand Avoidance, Pathological Demand Avoidance, PDA, Support Strategies

Authors: Elizabeth O’Nions, Caroline Floyd, Emma Quinlan, Antonia San José Cáceres, Connie Pidgeon, Essi Viding, Francesca Happé

Summary:

This poster summarises research on the behavioural features of extreme/pathological demand avoidance (PDA) using a semi-structured interview with parents of children diagnosed with autism who also displayed PDA traits. The study identified key areas of difficulty, including struggles with following demands, controlling behaviours, extreme reactions, engagement in fantasy/role play, avoidance strategies, poor social awareness, and intense emotional instability.

The findings highlight the significant challenges that PDA behaviours create for families and schools. The paper stresses that these behaviours should be properly assessed to develop effective management strategies tailored to each child’s needs. Recognising and addressing these behavioural difficulties early can help improve support for children with PDA, their families, and educators. This research contributes to a better understanding of PDA within the autism spectrum and reinforces the need for individualised approaches in assessment and intervention.

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Title: Mapping the Educational Experiences of Children with Pathological Demand Avoidance

Year Published: 2015

Keywords: Autism, Education, Pathological Demand Avoidance, PDA, School Exclusion, Special Educational Needs, Support Strategies

Authors: Dr. Emma Gore Langton, Prof. Norah Frederickson

Summary:

This study explores the educational experiences of children with Pathological Demand Avoidance (PDA) through parent-reported questionnaires. It aims to provide insight for educators and parents navigating the education system with a PDA child.

Findings confirm that children with PDA face significant challenges in school, displaying high levels of behavioural difficulties. Despite receiving extensive special educational needs (SEN) support and professional involvement, many still experience school exclusions and placement breakdowns. However, parents rated their child’s current school placement moderately positively, with an average ‘success’ score of 6/10.

The study highlights the urgent need for tailored educational approaches for children with PDA. It also discusses the implications of these findings by comparing them to the experiences of children with more typical autism spectrum conditions. The research underscores the importance of understanding PDA-specific needs to improve inclusion and long-term educational outcomes.

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Title: Prevalence Study: Extreme (“Pathological”) Demand Avoidance in Autism

Year Published: 2015

Keywords: Autism, Diagnosis, Diagnostic Interview, Faroe Islands, Pathological Demand Avoidance, PDA, Prevalence, Social and Communication Disorders

Authors: Christopher Gillberg, Carina Gillberg, Lucy Thompson, Rannvá Biskupsto, Eva Billstedt

Summary:

This study examines the prevalence of Pathological Demand Avoidance (PDA) within a general population of individuals diagnosed with Autism Spectrum Disorder (ASD) in the Faroe Islands. Researchers screened all 15 to 24-year-olds for ASD, identifying 67 individuals who met the diagnostic criteria. Parents of 50 of these individuals were interviewed using the Diagnostic Interview for Social and Communication Disorders (DISCO), which includes 15 PDA-specific items.

The study found that nine individuals (around 20% of those with ASD) had shown PDA traits in childhood. However, by the time of assessment, only one person still met the full PDA criteria. The findings suggest that while PDA traits may be present in childhood, they may not persist into late adolescence and early adulthood in the same way. This study is a thought-provoking read for professionals and those interested in PDA diagnosis and classification.

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Title: Diagnostic Tool: Features of Pathological Demand Avoidance (PDA) Identified Using the DISCO

Year Published: 2015

Keywords: Autism, Behavioural Assessment, Clinical Interview, Diagnosis, Diagnostic Interview, Pathological Demand Avoidance, PDA, Social and Communication Disorders

Authors: Elizabeth O’Nions, Judith Gould, Phil Christie, Christopher Gillberg, Essi Viding, Francesca Happé

Summary:

This poster provides a visual summary of research on how the Diagnostic Interview for Social and Communication Disorders (DISCO) can help identify Pathological Demand Avoidance (PDA). The study aimed to pinpoint which DISCO items best distinguish PDA from other autism spectrum profiles and to analyse the behavioural traits of individuals with PDA.

Using data from a previous parent-report study, researchers identified eleven DISCO items strongly associated with PDA. These included behaviours like ‘lack of co-operation,’ ‘apparently manipulative behaviour,’ ‘difficulties with others,’ and ‘repetitive acting out roles.’ While PDA traits overlapped with core autism spectrum disorder (ASD) features, the PDA group displayed more extreme behavioural challenges. The findings highlight the need for tailored assessment tools to accurately identify PDA traits. This research helps improve understanding of PDA within the autism spectrum and informs future diagnostic approaches.

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Title: Identifying Features of Pathological Demand Avoidance (PDA) Using the Diagnostic Interview (DISCO)

Year Published: 2015

Keywords: Autism, Behavioural Assessment, Clinical Interview, Diagnosis, Diagnostic Interview, Pathological Demand Avoidance, PDA, Social and Communication Disorders

Authors: Elizabeth O’Nions, Judith Gould, Phil Christie, Christopher Gillberg, Essi Viding, Francesca Happé

Summary:

This paper explores how the Diagnostic Interview for Social and Communication Disorders (DISCO) can help identify features of Pathological Demand Avoidance (PDA) within the autism spectrum. It reviews existing DISCO items that appear to be more specific to PDA traits and discusses how they compare to broader autism characteristics.

The study identified eleven DISCO items that strongly align with PDA. A group of individuals with a high number of these PDA-related traits was analysed, and their characteristics matched earlier descriptions of PDA by Elizabeth Newson and colleagues. The paper emphasises the need for a clinician-rated tool to assess PDA features more systematically. It also calls for further research to clarify the PDA profile within the autism spectrum. This study is particularly useful for professionals and those interested in how PDA is diagnosed using structured clinical interviews.

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Title: Pathological Demand Avoidance: Exploring the Behavioural Profile

Year Published: 2014

Keywords: Autism, Behavioural Assessment, Callous-Unemotional Traits, Conduct Problems, Intervention, Pathological Demand Avoidance, PDA

Authors: Elizabeth O’Nions, Essi Viding, Corina U. Greven, Angelica Ronald, Francesca Happé

Summary:

This study examines the behavioural traits of children with Pathological Demand Avoidance (PDA) compared to those with Autism Spectrum Disorders (ASD), Conduct Problems (CPs), and Callous-Unemotional Traits (CUs). The research aimed to explore whether PDA should be considered a distinct syndrome and addressed ongoing debates around its classification.

Using standardised parent-report measures, the study found that children with PDA exhibited severe impairments across multiple areas. Social difficulties in PDA were similar to those seen in ASD, while antisocial traits and reduced pro-social behaviours resembled those found in CP/CU groups. The paper discusses management strategies tailored to each group, emphasising the particular challenges faced by children with PDA traits. It also highlights the need for further research into the neurocognitive basis of PDA and potential interventions. This study contributes to the growing understanding of PDA and its place within developmental disorders.

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Title: Reflections on the 2014 Paper by O’Nions et al

Year Published: 2014

Keywords: ADHD, Child Psychiatry, Diagnosis, EDA-Q, Extreme Demand Avoidance, Pathological Demand Avoidance, PDA

Authors: Christopher Gillberg

Summary:

This commentary by Christopher Gillberg provides a historical perspective on Pathological Demand Avoidance (PDA) and its classification. Drawing from 40 years of experience in child and adolescent psychiatry, Gillberg suggests that PDA is not rare and often coexists with conditions like ADHD, anorexia nervosa, and other behavioural syndromes. He acknowledges PDA as a significant clinical issue that requires greater understanding.

The paper praises the development of the Extreme Demand Avoidance Questionnaire (EDA-Q) by Elizabeth O’Nions et al., discussing its usefulness and the need for further research. Gillberg proposes renaming PDA to Extreme Demand Avoidance (EDA) to avoid confusion with “Public Displays of Affection” and to emphasize the undeniable severity of the avoidance. He argues that while the demand avoidance is extreme, debates will continue about whether it is truly pathological. This article is a thought-provoking read for professionals and parents alike.

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Title: Pathological Demand Avoidance in a Population-Based Cohort of Children with Epilepsy: Four Case Studies

Year Published: 2014

Keywords: Autism, Diagnosis, Epilepsy, Holistic Assessment, Neurodevelopmental Conditions, Pathological Demand Avoidance, PDA

Authors: Colin Reilly, Patricia Atkinson, Leanne Menlove, Christopher Gillberg, Elizabeth O’Nions, Francesca Happé, Brian G.R. Neville

Summary:

This paper presents four case studies exploring the relationship between Pathological Demand Avoidance (PDA) and epilepsy in children. The study highlights the complexity of neurodevelopmental conditions and the frequent overlap of multiple diagnoses.

The case studies demonstrate how children with epilepsy may also exhibit extreme demand avoidance, emphasising the need for holistic assessments that consider PDA traits. The paper underscores the importance of identifying PDA within broader neurodevelopmental evaluations to ensure appropriate support and intervention. Recognising demand avoidance in children with epilepsy can help tailor educational and clinical approaches to meet their needs effectively.

This research contributes to the growing understanding of PDA as part of a broader spectrum of neurodevelopmental challenges and reinforces the necessity of individualised assessments for children with complex medical and behavioural profiles. It is particularly relevant for clinicians, educators, and researchers studying developmental disorders.

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Title: Development of the Extreme Demand Avoidance Questionnaire (EDA-Q)

Year Published: 2013

Keywords: Autism, Behavioural Assessment, EDA-Q, Extreme Demand Avoidance, Pathological Demand Avoidance, PDA, Research Tool

Authors: Elizabeth O’Nions, Phil Christie, Judith Gould, Essi Viding, Francesca Happé

Summary:

This paper details the development of the Extreme Demand Avoidance Questionnaire (EDA-Q), a tool designed to measure PDA traits based on parent-reported behaviours. Published in 2013, when awareness of PDA was growing among professionals, the study aimed to test the validity of this new questionnaire and its ability to quantify PDA-related behaviours.

The research concluded that the EDA-Q is a useful tool for identifying PDA traits in children, though it is not a formal diagnostic test. Instead, it provides a standardised way for researchers and clinicians to measure PDA tendencies for study purposes. While aimed at professionals, the paper may also interest parents who have encountered the EDA-Q and want to understand its background and reliability. The study contributed to the broader recognition of PDA and laid the groundwork for further research into assessment and support strategies.

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Title: Adult Diagnosis of Pathological Demand Avoidance – Subsequent Care Planning

Year Published: 2012

Keywords: Adult Diagnosis, Behaviour Management, Care Planning, Pathological Demand Avoidance, PDA, Psychological Interventions, Secure Hospital

Authors: Judy Eaton, Rosie Banting

Summary:

This paper presents a case study of a young woman diagnosed with Pathological Demand Avoidance (PDA) while in a low secure hospital. The study highlights the importance of accurate assessment in residential and secure settings, as misdiagnosis or inappropriate formulations can lead to distress and increased challenging behaviours.

The paper outlines the clinical features observed in the patient and details the management strategies and psychological interventions implemented following her diagnosis. It emphasises the need for professionals working in secure settings to be aware of PDA, as traditional behaviour management approaches may be ineffective or even counterproductive. The study underscores the importance of tailored care planning to ensure that individuals with PDA receive appropriate support. This research is particularly relevant for clinicians, caregivers, and professionals working in forensic or residential settings.

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Title: Helping Your Child with PDA to Play: Eight Strategies for Supporting a Child with Pathological Demand Avoidance at Home

Year Published: 2011

Keywords: Autism, Behavioural Support, Parenting Strategies, Pathological Demand Avoidance, PDA, Play, Social Skills

Authors: Josephine Carlile

Summary:

This case study explores strategies for helping a young boy with Pathological Demand Avoidance (PDA) engage in play, develop social skills, and build positive relationships. Recognising that traditional parenting techniques may not be effective for children with PDA, the study outlines eight key strategies that supported his progress:

• The use of humour to reduce anxiety and encourage engagement.
• Indirect praise to avoid pressure.
• Thinking aloud to model problem-solving without direct instruction.
• Flexibility and creativity to allow choice and autonomy.
• Tone of voice to create a calm and inviting environment.
• Letting things go to avoid unnecessary conflict.
• Treating anger as communication rather than defiance.
• Building positive relationships to foster trust and cooperation.

This paper is a valuable resource for parents and caregivers looking for practical, everyday strategies to support children with PDA at home.

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Title: The Need for Distinguishing PDA within Pervasive Developmental Disorders

Year Published: 2003

Keywords: Autism, Behavioural Assessment, Diagnosis, Early Recognition, Pathological Demand Avoidance, PDA, Pervasive Developmental Disorders

Authors: Elizabeth Newson, Le Maréchal K, David C

Summary:

This paper by Elizabeth Newson and colleagues aimed to establish Pathological Demand Avoidance (PDA) as a distinct condition within the Pervasive Developmental Disorders (PDDs), now classified as Autism Spectrum Disorders (ASD). Newson identified a group of children with severe behavioural difficulties who did not fit traditional autism or Asperger’s syndrome criteria. Many had been diagnosed with PDD – Not Otherwise Specified (PDD-NOS), which often led to confusion and inappropriate management strategies.

Newson’s research, based on children seen in her clinics between 1975 and 2000, demonstrated key behavioural differences that supported PDA as a separate diagnosis. A follow-up study of individuals aged 16-32 confirmed the robustness of Newson’s original descriptions into adulthood. Since this paper’s publication, recognition of PDA within the autism spectrum has grown significantly. However, it remains an important read for parents and professionals seeking to understand the value of accurate diagnosis for effective intervention.

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