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Parental Blame and the PDA Profile of Autism

This report presents the findings of a survey of 1016 parents and carers of PDA children. The aims of the survey were: to explore how prevalent parental blame is among families with PDA children to identify any patterns around when, how and why parental blame manifests to find out if there are any types of parents/carers who are more susceptible to being blamed for their PDA child's presentation to learn about how this feels for parents/carers. The report centres parents' and carers' voices and experiences throughout. 88% of parents/carers completing the survey said that they had felt blamed for some aspect of their PDA child's presentation or "lack of progress". The authors conclude that when parents/carers are blamed for their PDA child's presentation, it is the child that ultimately suffers. Their analysis showed that families headed by either a lone mother and/or a neurodivergent parent are most at risk of blame in the form of safeguarding. The report concludes with the changes that parents and carers would like to see, and notes the need for more autism/PDA professionals. Please note that the report contains sensitive content, including references to parent blame, self-harm, and suicide. Authors: Alice Running and Danielle Jata-Hall Published: February 2023   View report   Further resources: Education, health, [...]

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 [...]

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

PDA & Sleep

The PDA Society and The Sleep Charity have worked together to develop this resource about PDA & Sleep which is based on our sleep survey results and the lived experience of PDA people and sleep practitioners. This 4 page resource covers the key difficulties people told us they experience around sleep and their tips on what helps; further advice from The Sleep Charity; and information about sleep and the circadian clock based on extracts from ‘Sleep Misfits’ by Sally Cat. Published: June 2022   Download resource   Related resources You may also find it useful to watch our Q&A session about PDA & sleep with guest speakers Sally Cat and Helen Rutherford. A recording of this is available to purchase for 30 days via our training hub. Autism and Sleep: Spectrum Gaming  

Sleep Misfits: The reality of Delayed Sleep Phase Syndrome & Non-24

Sleep Misfits is the first book to extensively explore delayed sleep phase syndrome (DSPS) and non-24-hour-sleep-wake disorder (Non-24) through the words of actual experients. Although circadian sleep disorders have seen an increase in published research and media coverage, they are still little-known and little-understood. There remains massive prejudice and discrimination against those of us whose body clocks prevent us from waking and sleeping at socially-approved hours. The main purpose of this book is to tackle these wide-scale negative assumptions by increasing empathy. Additionally, the book is intended to serve as a manual for people affected, including their families. A detailed section on childhood is included for the many parents confused and exasperated by their children’s wayward sleep hours. Text book style descriptions are supplemented with research links, and sit alongside comments volunteered by real-life DSPS and Non-24 people, and a wealth of illustrations. Available on Amazon worldwide as an illustrated paperback, and text-only ebook. The ebook is free to borrow via Kindle Unlimited. Sally Cat is kindly donating royalties from this book to the PDA Society - for more info on PDA and sleep please see the results of our sleep survey in which 10% of responses indicated circadian rhythm difficulty of some sort, [...]

Information sheet for social care professionals

This 2 page resource gives social care professionals an introduction to key information about PDA, including how PDA may present in children and adults, examples of good practice and helpful approaches plus where to find further information.   Published by: PDA Society, March 2022   Download sheet

Keira’s story

Keira is 17 and currently doing very well after a 10 year struggle with an eating disorder and difficulties related to her PDA profile not being understood or supported by health and social care. Her story illustrates the life-changing impact when professionals adapt their practice to be person-centred and PDA-friendly. Sharon Donaldson, director of the specialist eating disorder unit where Keira was an in-patient, also shares how she and her team worked with Keira and her family to develop the personalised, holistic approach which was so key to achieving a successful outcome, and is now being shared with others as an example of best practice. TRIGGER WARNING: this case study contains information about eating disorders and distressed behaviours (including self-harm) and mention of suicidal intent. Please note that Keira’s name has been changed to protect her identity. Keira was first seen by CAMHS age 5 because of the distressed behaviours she was exhibiting, including self-harm and meltdowns. Her behaviour was attributed to ‘naughtiness’ and her parents were sent on a parenting course. However, two years later Keira was diagnosed with autism and ODD - a diagnosis that was subsequently revised to a PDA profile of autism. She was excluded from school aged [...]

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

Helpful approaches for special occasions

Special occasions, celebrations and holidays can be overwhelming for autistic people, so we've put together some general suggestions of helpful approaches for PDA families & individuals which can also be shared with wider family & friends to help everyone understand what helps. This one-page information sheet is free to view and download via the button below.   Published by: PDA Society, October 2021   View & download info sheet

PDA & school avoidance podcast with James

15 year old James shares his thoughts on why school is difficult for young people with a PDA profile. He openly talks about his experience of school and the daily challenges around demands, masking, sensory difficulties, school avoidance, friendships and transitions. He also offers some possible solutions and tips for teachers, and shares some coping strategies that have helped him along the way. A transcript of the episode is also available here. More about James' experience of PDA is also available on our website, including: PDA & masking with James (video) James' story (case study)     Listen on Anchor   Further information and resources about PDA for education professionals are also available on the 'Working with PDA' pages of our website.

Information sheet for teaching professionals

This 2 page resource gives education professionals bitesize information about PDA, including how PDA may look in school, good practice and helpful approaches plus where to find further information.   Published by: PDA Society, August 2021 and updated October 2021   Download sheet   A third party German translation of this resource is also available here.  

Being Julia

A Personal Account of Living with Pathological Demand Avoidance. Diagnosed with Pathological Demand Avoidance (PDA) at aged 12 and writing this memoir at age 37, Julia Daunt depicts the ins and out of PDA and its symptoms, while maintaining a positive outlook on what is possible to achieve. Co-written with professional specialist Ruth Fidler, it covers how PDA impacts Julia's life, including meltdowns, sensory issues and communication in relationships. Including examples of school reports and handwritten letters, a chapter written from Julia's partner's perspective and even an example of Julia's favourite recipe, this warm and personal look at living and thriving with PDA is informative and inspiring.   Authors: Ruth Fidler & Julia Daunt Publishers: Jessica Kingsley Publishers   Find on publisher's website

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  

Declarative Language Handbook

Declarative Language Handbook: Using a Thoughtful Language Style to Help Kids with Social Learning Challenges Feel Competent, Connected, and Understood. This book was written to teach you how making small shifts in your language and speaking style will produce important results. You will stop telling kids what to do and instead thoughtfully give them information to help them make important discoveries in the moment. These moments build resilience, flexibility, and positive relationships over time. You might be a therapist or a teacher, or you might be a parent, grandparent, or babysitter. Your child might have a diagnosis such as autism, Asperger’s Syndrome, ADHD or Non-Verbal Learning Disability. But they might not. No matter your child’s learning style, this book was written to help you feel equipped to make a difference, simply by being mindful of your own communication and speaking style.   Author & Publisher: Linda K. Murphy   Find on Amazon

PDA & masking with James

In this video 14 year old James kindly shares information about his experience of PDA and masking. Hi, I'm James and I'm 14 years old. I was diagnosed with PDA at the age of 12 and would like to share some information about masking. A lot of people with PDA such as myself often use what is known as a mask to hide emotions and avoid demands. Find out more in this video. A transcript of the video is also available here. More about James' experience of PDA is available to read here: James’ story.   Published by: PDA Society, July 2021   Watch on YouTube  

The Teacher’s Introduction to Pathological Demand Avoidance

Essential Strategies for the Classroom. This essential guide for working with PDA pupils outlines effective and practical ways that teachers and school staff can support these pupils, by endorsing a child-led approach to learning and assessment. Beginning with an introduction to PDA and how it can affect the education experience, it is then followed by thoughtful, useful strategies school staff can implement to build a collaborative relationship with pupils and help them to thrive in the school environment. The activities presented aim to make children more comfortable and at ease, and therefore better able to learn. It covers key issues for children with PDA, such as sensory issues, preferred language and phrasing of demands, social skills, and recognising distressed behaviour. The chapter summaries and simple activities listed throughout make this a useful tool for busy teaching staff working with PDA pupils.   Author: Clare Truman Publisher: Jessica Kingsley Publishers   Find on publisher's website

What is PDA? information sheet

This information sheet contains some essential information about PDA and what helps, in an easily shareable format... it can be downloaded & emailed or printed & shared with others.   Published by: PDA Society, May 2021   Download/print sheet   Also available in this series are our What is PDA? booklet and What is PDA? video. A third party German translation of this resource is also available here.

Letter to professionals

Sharing information with the professionals you’re in contact with is a great way to raise awareness and increase understanding of PDA. For PDA Day 2021 we created this new one page letter with some essential information about PDA that’s easy to share … it can be downloaded & emailed or printed & posted/handed over in person (when Covid restrictions allow!).   Published by: PDA Society, May 2021   Download/print letter

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.  

Beth’s story

Beth’s Dad Jeremy tells the devastating and disturbing story (trigger warning: this case study includes details of self-harm, restraint and abuse) of how Beth was ‘failed by the system’. Jeremy covers Beth’s early years, her 19 placements in 6 years, her first section aged 11 and her fateful move to an ATU. Despite PDA being recognised relatively early in the process, none of her care was PDA-informed, leaving Beth’s anxiety and distressed behaviours to escalate and escalate over many years. Jeremy embarked on a high-profile media campaign, but despite this and the high-level meetings and reviews that ensued, her situation worsened. Eventually a review involving an autistic advocate led to a happy ending, with Beth finally being well-supported in a bespoke community placement. Beth was a much-wanted and much-loved daughter, the first girl in the family for many years. As a baby, however, she was hard to settle, slept little and wanted to feed constantly. The social and sensory demands of toddler group proved tricky for Beth, and we felt like ‘meerkat’ parents constantly on edge, looking out for potential triggers. As soon as she started at nursery school, her behaviours escalated considerably – she was very controlling towards other children, [...]

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 Norfolk & Waveney Integrated Care Board 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 [...]

PDA in the Therapy Room

PDA in the Therapy Room: A Clinician's Guide to Working with Children with Pathological Demand Avoidance. This guide sets out the most effective strategies for clinicians to provide the best care for children with PDA, adapting conventional modes of therapy to suit their needs. Methods include indirect techniques such as play-based therapy or trauma-informed approaches enabling the child to process their experiences on their own terms. With additional guidance for supporting the families of patients and addressing common obstacles, this book provides understanding and guidance for professionals making a difference to the lives of children with PDA.   Author: Raelene Dundon Publisher: Jessica Kingsley Publishers   Find on publisher's website

Introduction to PDA (2021)

An introductory video about PDA (Pathological Demand Avoidance). This video is just over 20 minutes long and covers lots of information, including: What is demand avoidance? PDA & Autism Key features of a PDA profile Research & clinical themes Why identify PDA? How PDA can feel What are demands? Demand avoidance in PDA Helpful approaches Further information We hope this is a helpful introduction and helps to put PDA on everyone's radar.   Published by: PDA Society, Jan 2021   Watch on YouTube   Related resources: Introduction to PDA (2021) Hungarian translation

What is PDA? video

This short video gives a quick introduction to PDA and was created to help raise awareness of PDA with the general public and convey some essential information about PDA in a quick and easily shareable format. Voiced by PDAers and PDA Society team members. Available to watch and share below or via our YouTube channel here.   Published by: PDA Society, January 2021   Further information Also available in this series are our What is PDA? information sheet and What is PDA? booklet.  

EHCP guide

Education, Health and Care Plans to support a PDA profile of autism. An Education, Health and Care Plan (EHCP) is a document used in England to outline a child or young person’s special educational needs (SEN) and the provision that should be made to meet those needs. Not every PDA child or young person will have, or need, an EHCP but for those who do, these examples of good practice will hopefully provide a starting point for families and professionals. In addition, you would not expect an EHCP to cover all the areas identified here; just those which would be of most help for each individual child/young person. This resource intends to provide you with a ‘database’ of possibilities. This resource has been compiled from suggestions from both families and education professionals supporting PDA children and young people and in consultation with our PDA adult panel. Many of these suggestions are useful for anyone who would benefit from an EHCP and some relate more specifically to demand avoidance.   Published by: PDA Society First version: January 2021 Second version: July 2021 View guide  

What is PDA? booklet

This booklet is designed to be an introductory guide to the Pathological Demand Avoidance profile of autism for individuals, families and professionals. The booklet covers an overview of PDA, how PDA can feel, an insight into what demands are and how they’re avoided, info about identifying PDA, helpful approaches and self-help and the benefits of understanding PDA. The booklet can be viewed via the button link below and is free to download, print and share with others. The PDA Society can also supply hard copies of the booklet free of charge plus postage and packaging. Please see here for further details   Published by: PDA Society First version: July 2020 Second version: April 2021   View booklet   Further information Also available in this series are our What is PDA? information sheet and What is PDA? video. Various third party translations of this booklet are also available here.

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 [...]

National Autistic Society PDA resources

Here are links to some of the National Autistic Society's PDA resources: Pathological Demand Avoidance (PDA) PDA - a guide for autistic adults PDA - a guide for parents and carers Pathological Demand Avoidance? An adult's perspective Post-diagnosis support - a guide for autistic adults Meeting the educational needs of pupils with a PDA profile National Autistic Society PDA Conferences Please see the National Autistic Society’s events page for information about the current year’s conference and summaries from previous conferences here: 2019, 2018, 2017, 2016.