Diagnosis
Found 26 listings
Neurodiversity! What’s That?
Neurodiversity! What’s That? is for children aged 7 and upwards.
This book is a fun introduction to neurodiversity written by a neurodivergent mum aiming to improve the self-esteem and confidence of children.
The book includes many positive messages and can also help parents navigate the world of neurodiversity.
Neurodiversity! What's That? mentions autism, PDA, ADHD, dyslexia, dyscalculia, dyspraxia, dysgraphia and Irlen Syndrome.
Understanding neurodiversity enables parents and children to learn about disability and differences positively, promoting self-esteem and acceptance.
Author: Nadine Arthur
Find on Amazon
The Panda on PDA
In this positive, gentle and PDA-friendly guide for young children, PDA is explained by a playful Panda who is PDA and very proud of it. The Panda is full of talents and strengths, but finds it very hard to do what others want. In fact, the Panda has become great at climbing trees and bamboo, and hiding in caves to escape demands!
The Panda addresses the challenges and struggles of PDA honestly, but can also thrive and live a happy life in the right environment, when supported by others.
Author: Glòria Durà-Vilà
Illustrator: Rebecca Tatternorth
Publisher: Jessica Kingsley Publishers
Find on publisher's website
Identifying & Assessing a PDA profile – Practice Guidance
Practice guidance collating the professional practice and experience of a multidisciplinary group of professionals working in the NHS and private practice.
The goal of this document is to aid assessment of a PDA profile, to distinguish PDA from other presentations of marked demand avoidance, and to signpost appropriate support and guidance for individuals and families.
We hope this resource will be informative and useful for all involved in identifying and assessing neurodevelopmental conditions in children and adults, as well as other healthcare, social care and education professionals.
A web-version is also available to view here and printed copies are available to order here.
Here’s a letter/email template which can be used to inform clinicians and autism teams about the practice guidance.
Published by: PDA Society, January 2022
Download Practice Guidance
A third party German translation of this resource is also available here.
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
The Amazing Autistic Brain Cards
150 Cards with Strengths and Challenges for Positive Autism Discussions.
This deck of cards is a resource to help professionals, parents and anyone working with autistic young people to have discussions about an Autism diagnosis in a personalised, positive and meaningful way.
The beautifully designed cards each show a strength - such as being inquisitive or honest - or a challenge - such as sensory difficulties or understanding emotions. The pack also includes reusable blank cards which can be personalised.
The accompanying booklet provides approaches and strategies developed by Dr Dura-Vila in her clinical practice. She also shares her personal (and occasionally humorous) experiences, including tips for discussing an autism diagnosis. These accounts within inspire readers to give their best to any young person when sharing an autism diagnosis, and in the conversations that follow.
Authors: Glòria Durà-Vilà (Author), Rebecca Tatternorth (Illustrator)
Publisher: Jessica Kingsley Publishers
Find on publisher's website
Ways to Be Me
From the bestselling author duo behind Can You See Me? comes this exceptional portrayal of autism diagnosis, with diary entries by 12-year-old autistic author Libby Scott based on her own experiences of autism with a demand avoidant profile.
Taking place before Can You See Me? and Do You Know Me? this standout prequel follows Tally through her autism diagnosis in her final year of primary school. Ten-year-old Tally had high hopes for Year 6. Being in the top class at school means a whole host of privileges, but even better than that is the school production – and Tally is convinced she’ll win the lead role. But at home, things aren’t going so well. Mum and Dad have been making Tally feel pressured and upset, and Tally wishes things didn’t bother her so much – but they do, and sometimes she feels so misunderstood and frustrated, she could explode. Then Tally’s mum and dad tell her about something she’s never heard about before. Something called autism. And everything changes.
Authors: Co-written by 12-year-old autistic blogger Libby Scott and Rebecca Westcott
Publisher: Scholastic
Find on publisher's website
Other books in this series:
Can You See Me?
Do You Know Me?
All the Pieces of Me
PDA best practice – the professional voice
PDA best practice - what the professionals would like you to know
Professionals from a range of backgrounds explain why they feel it's important to identify PDA and share their tips for best practice.
This is one of two resources created for PDA Day 2021 that share best practice about PDA for professionals from all sectors including healthcare, education, social care, the law, therapists, counsellors, advocates and policy makers.
Available to listen to as a podcast here or via the player below.
A transcript is also available here.
Published by: PDA Society, May 2021
Podcast
Listen on Anchor FM
The second resource in the series shares the PDA community's voice letting us know about professionals who've made a positive difference and highlighting what they'd like you to know about PDA and what helps.
PDA best practice – the PDA community’s voice
PDA best practice - what the PDA community would like professionals to know
This is one of two resources created for PDA Day 2021 that share best practice about PDA for professionals from all sectors – including healthcare, education, social care, the law, therapists, counsellors, advocates and policy makers.
This video shares the PDA community’s voice, following a survey asking about experience of professionals who’ve made a positive difference and inviting comment on what they’d like others to know about PDA and what helps.
A transcript of this video is also available here.
Published by: PDA Society, May 2021
Watch on YouTube
The second resource features professionals from a range of sectors who explain why they feel it’s important to identify the PDA profile and share their own best practice tips.
Local position statements on PDA
Local authorities, NHS trusts and other bodies are increasingly producing and sharing information about PDA within local areas. This page contains links to such information.
Local position statements
Some local areas have found it helpful to state their position on the use of terminology around PDA.
Examples of formal position statements include:
Surrey
East Sussex
Alder Hey Children's NHS Foundation Trust
Examples of PDA being acknowledged include:
Rotherham, Doncaster and South Humber NHS Foundation Trust – CAMHS
Northamptonshire Heathcare NHS Foundation Trust
These position statements and acknowledgements of PDA clearly illustrate how it is possible for local authorities, and supporting organisations, to acknowledge and flag up the PDA profile in diagnosis reports, as a signpost to appropriate support, whilst still working within the guidelines of the DSM-5-TR and ICD-10 diagnostic manuals.
As has been the case with Alder Hey Children's Hospital, it is hoped that local authorities who do accept the validity of the PDA profile of autism, will invest in commissioning PDA specific training to improve outcomes for PDA individuals.
The PDA Society feels this is a very positive step in the right direction for greater understanding, awareness and acceptance of the PDA profile, and hope that both children and adult services in other local [...]
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 [...]
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
The Extreme Demand Avoidance Questionnaire (EDAq)
The ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q) was developed to measure behaviours reported in clinical accounts of extreme/‘pathological’ demand avoidance (PDA). The questionnaire allowed these traits to be measured consistently for research purposes. The EDA-Q should not be considered a diagnostic test.
In the study of parent-reported behaviours in children and adolescents, for children aged 5 to 11 a score of 50 and over, and for children aged 12 to 17 a score of 45 and over, indicated an elevated risk of parents reporting that the child had been clinically identified as having a profile resembling PDA. However a lower score would not necessarily preclude PDA from being a factor, especially when presentations may be more subtle (e.g. where aggression may be less of a factor or where avoidant traits may be less ‘overt’). PDA is dimensional (meaning that it impacts different people in different ways and in different environments) so the EDA-Q score should be interpreted dimensionally rather than as a formal 'cut off' point.
Liz O'Nion's website
For further information
A description of how the measure was developed and the preliminary validation of it can be found here.
Please also see the May 2021 adaptation of the EDA-Q called the EDA-8. It is [...]
Development of the ‘Extreme Demand Avoidance Questionnaire’
Development of the 'Extreme Demand Avoidance Questionnaire' (EDA-Q): Preliminary observations on a trait measure for Pathological Demand Avoidance
This paper provides in-depth information about the development of ‘The Extreme Demand Avoidance Questionnaire’ (EDA-Q). It was published in 2013; a time when the awareness of PDA was increasing amongst professionals.
The purpose of this study was to develop and test the validity of the EDA-Q. This was a relatively new questionnaire-measure of extreme demand avoidance. The aim was to quantify the extent to which a child displays PDA features based on parent-reported information.
It was concluded that the EDA-Q was a potentially useful research tool (rather than a diagnostic tool) for identifying the PDA profile. Although aimed at professionals, this paper would be useful to parents who may have experience of the EDA-Q and would like to research its validity and origins.
Authors: Elizabeth O’Nions, Phil Christie, Judith Gould, Essi Viding & Francesca Happé
First published online: Journal of Child Psychology and Psychiatry, 7th October 2013
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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
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View supplementary materials
Diagnostic tool: poster presentation
Features of Pathological Demand Avoidance Identified Using the Diagnostic Interview for Social and Communication Disorders (‘DISCO’)
This is a concise, diagrammatic summary of the original research paper. The aims of the original study were two-fold: to identify items of the DISCO that measure features of PDA most likely to discriminate PDA from the rest of the autism spectrum, and to examine the behavioural profile of a subset of individuals with a PDA profile.
Information collated from a previous parent-report study was used to identify the items of the DISCO that highly endorsed PDA. The sample group consisted of individuals who had been assessed by the DISCO. Eleven items were identified which included features such as ‘lack of co-operation’, ‘apparently manipulative behaviour’, ‘difficulties with other people’ and ‘repetitive acting out roles’. The PDA subset of the group had a very high endorsement of most of the items identified.
It was found there was overlap for some key ASD features between PDA and the rest of the sample. Similar profiles of impairment relating to social interaction, communication, imagination and rigid, repetitive behaviours were found in both the PDA group and the rest of the sample.
The behaviours commonly endorsed by the PDA group highlight the [...]
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 [...]
Good diagnostic assessment – children
This information has been produced by the PDA Development Group, August 2017. The PDA Development Group is an informal group comprised of representatives from the NAS and PDA Society and individual practitioners with an interest in PDA from a range of disciplines (education, paediatrics, psychology, research) working in both independent and statutory settings. Please note that the PDA Development Group no longer meets.
What makes a good diagnostic assessment for a child with a PDA profile? - A basic guide
This paper is aimed at those who may be wondering if their child’s profile of development and behaviour fits with the descriptions of Pathological Demand Avoidance (PDA). It briefly sets out some of the key issues around what a diagnosis is for, what steps are considered important in arriving at a diagnosis and current views about where PDA fits within this. The information on diagnosis found on the National Autistic Society website is also very helpful: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis
PDA is now widely understood to be part of the autism spectrum. Children who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This is rooted in an anxiety-based need to be in control.
What is a [...]
Evidence for use of PDA terminology
Evidence for Professional Consideration of Demand Avoidance in Autism Assessments
The lack of research into PDA explains why it doesn’t feature in diagnostic manuals, although these manuals do permit for clarifying terminology such as “ASD with a demand avoidant profile”.
The following evidence has been drawn together to demonstrate that, while different viewpoints exist, clinicians who choose to use terminology to indicate a PDA profile are not doing so in opposition to current medical guidance and thinking. It also illustrates the increasing evidence that the driver for the use of terminology is the impact on improving outcomes.
This document gives a broad outline of evidence from a range of sources and is now
supplemented by detailed clinician-focussed Practice Guidance: ‘Identifying and assessing a PDA Profile’ published in Jan 2022.
Download document
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
Being Misunderstood – 2018 Survey
Experiences of the PDA Profile of Autism
Education, health and social care services are designed to be 'needs-based' and 'outcomes-focused'.
While the intention is clear, there is a group of autistic people whose needs are frequently not identified in detail, not understood in practice and not fully communicated between professionals. As a result, outcomes are very poor.
This was the conclusion of an extensive survey of almost 1,500 people into experiences concerning the Pathological Demand Avoidance profile of Autism. It was carried out in March 2018 by the PDA Society.
Key findings:
The results show that very many young people with a PDA profile of Autism are finding it very difficult or impossible to cope in the school environment, and the lack of support available from services means that families are often relying on their own research to work out how to support their children.
The results demonstrated the ways in which difficulties persist into adulthood, exacerbated by a continued lack of understanding and support from services.
Conclusions:
It is concluded that it is in the interests of everyone that professionals are empowered to see the individual and focus on improving outcomes.
For this to happen there are a number of recommendations, the most important being that local [...]
Understanding Pathological Demand Avoidance Syndrome in Children
A Guide for Parents, Teachers and Other Professionals
The first book ever written about PDA - it gives a comprehensive overview for everyone with an interest in the subject. It was written collaboratively by professionals and parents.
This straightforward guide offers a complete overview of Pathological Demand Avoidance Syndrome (PDA) and gives practical suggestions for overcoming the difficulties it poses in a wide range of contexts from diagnosis through to adulthood. Starting with an exploration into the background of PDA that answers many of the immediate questions triggered when a child is first diagnosed, the book goes on to look at the impact of the condition on different areas of the child's life and what can be done to help. The authors present useful information on early intervention options and workable strategies for managing PDA positively on a day-to-day basis. They also examine ways to minimize common difficulties that may be encountered at home and school, making life easier for the child, family and peers. The final chapters tackle new problems that can arise when the teenage years hit and how to assist a successful transition from adolescence to adulthood. Illustrative case examples are included throughout, and the book concludes with [...]
Assessing speech & language needs
10 tips for assessing speech & language needs in children with PDA
by Libby Hill, Speech and Language Therapist
Pathological Demand Avoidance (PDA) is a profile on the autism spectrum. As its name suggests, people with a PDA profile avoid demands to an extreme extent. Not in the way that all of us sometimes avoid demands, but in a way that is underpinned by huge anxiety, drives a need to be in total control and makes ordinary everyday things extremely difficult. These ordinary everyday things include appointments with speech and language therapists, of course!
I’ve assessed over 100 children with a PDA profile, and not one of them to date has had typical language and social communication (likewise adults with PDA, or PDAers as many preferred to be called, report exactly the same issues).
This isn’t surprising, of course, given that PDA is a profile of ASD. But with PDA the speech and language difficulties often present differently. Many children with PDA are extremely articulate, and many of their parents wonder how an SLT could possibly be helpful for them. By building an accurate picture of strengths, as well as understanding where some underlying difficulties arise from, we can help all those living [...]
Statement about diagnostic terminology
PDA Society statement on diagnostic terminology
PDA is widely, but not universally, understood to be a profile on the autism spectrum.
Understanding of PDA is at an early stage and robust research is urgently needed.
There is currently a range of academic and clinical perspectives about PDA.
It is important to understand this debate because it explains why PDA is sometimes dismissed by professionals; and the lack of research explains why PDA doesn’t feature in diagnostic manuals although they do allow for clarifying terminology such as ‘ASD with a demand avoidance profile’ as explained in our evidence for the use of PDA terminology document.
Whilst academic and clinical perspectives are extremely important, we believe the large and growing body of PDA individuals’ and their families’ lived experience is equally valid.
The PDA Society’s primary focus is less on the terminology used and more on individual needs being understood and diagnostic formulations leading to clear signposting of helpful approaches.
About demand avoidance and PDA
Demand avoidance is a natural human trait, we all avoid demands to different degrees at different times. When demand avoidance is more significant there can be many possible reasons for this: it might occur around certain situations (e.g. at school or in the workplace, [...]
Hertfordshire families
A survey of 38 families in Hertfordshire showed that many felt desperate and a majority described how local services had not helped them. These results were published with a call to action, with the support of local Autism charities, and taken to the Herts All-Age Autism Partnership Board with a call for leadership on recognising PDA.
Published: 2017
View report
Survey of Professionals
Overview
Awareness of PDA has been growing rapidy in recent years. The National Autistic Society run annual conferences on the subject and research is now being conducted by a number of different institutions, so understanding of the condition is developing apace.
Parents, schools and health and eductional professionals are finding that the management strategies that come with an understanding of PDA are extremely helpful for children and young people in their care.
It is good news that thousands have been through training or attended conferences on PDA in the past year alone.
However, although there is increasing understanding amongst a range of professional groups, the 'medical model' which underpins the practice of clinicians has been constraining some, particularly those who don't have sufficient experience of knowledge of the condition.
Survey of Professionals
Members of the PDA Society often talk about the difficulties of finding individual Autism practitioners with sufficient knowledge of Pathological Demand Avoidance syndrome to be confident that they are making an informed diagnosis. This is important, not for reasons of diagnosis itself, but because when usual ASD strategies are used, young people with PDA fail to progress whereas with the correct advice a significant difference can be made.
In order to find out more, [...]