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Helen’s story – PDA in families and deciding to home educate

Helen self-identifies with a PDA profile and sees the same traits in other family members including her daughter and her Mum, with mutual understanding across the generations having led to an instinctively collaborative and compassionate approach to both parenting and education. Passionately believing that our education system is not fit for purpose, despite being a highly qualified education professional, Helen has chosen to home-educate her daughter and describes the process as a ‘dance that goes back and forth and a journey of trust’. This is their story … I discovered PDA at around age 40 and initially dismissed it as yet another attempt to pathologise what I deemed to be pretty ordinary behaviour. I’ve always strongly wanted to avoid every day demands, found other people very confusing, had periods of intense focus, struggled with mood and been really good at playing various roles to get by in the environments I found myself in – I just assumed this was everyone’s experience! At age 41, I came back to it – by now my daughter had reached compulsory school age and, just as planned since she was 18-months old, she is home-educated. The decision to home educate had nothing to do with [...]

Surviving A-Levels – Jo’s story

Personal Reflection: Surviving A-Levels by Jo. Jo is a PDA young adult. He studied A-Level Philosophy, Maths and English at a mainstream school and shares his personal experience here, offering valuable insights for both young people and adults. Jo reflects on some of the challenges he faced and the approaches he found helpful to overcome these challenges. He also talks about the benefits of self-awareness and how meditating helped him with this. When I was 16, I started at a new school to study for my A-Levels. It was the first time I had attended a regular mainstream school since I quit early in Year 7. My schooling for the 6 years in between had been the complete opposite to a mainstream environment, so there was no reason to believe I would do any better this time than I had previously, except for the fact that I had accepted it would happen and that it was my will. And that tends to be the struggle with PDA I think - starting. It’s probably unhelpful to hear then that in this case it wasn’t a struggle and indeed it doesn’t strike me as an example of my own struggles with PDA, but it [...]

What can be learnt from parents about school avoidance in Autistic pupils?

What can we learn from parents and caregivers of school-aged Autistic children to inform current Emotionally Based School Avoidance (EBSA) intervention approaches in England? A small study written as part submission to MEd Special Education Autism (Children) University of Birmingham. Author: Amelia Green BSc (hons) Psychology, GMBPsS This study was designed to understand Government and Local Authority (LA) approaches to school attendance and to supporting Autistic school-aged children who struggle with Emotionally Based School Avoidance (EBSA). It obtained the viewpoint of 1,200 parents and carers to see what may be learnt to inform the current approach. The statistics and study have some very powerful, relatable and at times hard to read results, with quotes that very much resonate with what we hear daily at the PDA Society. Content warning: parent blame, self-harm and suicide. 45% of 1,026 respondents reported that their child either had a diagnosis of PDA they or suspected PDA and the author notes that "the data presented also requires further investigation, such as if there is a correlation between EBSA and Pathological Demand Avoidance (PDA) as shown in Figure 2. Future research should explore this to identify correlations and inform approaches to EBSA". The study concludes that it is clear that [...]

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 [...]

Calendar Girl: The memoirs of a PDA child in a dysfunctional family

Calendar Girl is the first of Sally Cat’s planned series of short memoirs which, book by book, will recount her entire childhood with the aid of her rare photographic, calendar memory. This first book, covering the author’s first eight years, includes crystal clear memories of babyhood, toddlerhood and young childhood of growing up in a dysfunctional, undiagnosed neurodivergent family. The short memoir’s purpose is to communicate the lived experience of an internalising PDA child to parents seeking to understand their own kids. Available in paperback and Kindle edition. Sally Cat is kindly donating all royalties from this book to PDA Society.   Author: Sally Cat   Find on Amazon

All the Pieces of Me

From the bestselling authors of Can You See Me? comes the fourth exceptional Tally book! Year 9 can be tough for everyone, but for Tally it feels even tougher. Everything seems to be changing as she and her friends get older. Make-up, boys, social media, GCSE prep – why is it all starting to feel so different? Tally has always known that being autistic means some things are harder for her than they are for other people. But becoming a teenager has left Tally feeling like she has no idea who she even is anymore…   Authors: Co-written by 14-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? Ways to Be Me

Q&A Live – What is PDA for parents and carers

This Q&A Live recording provides parents and carers with an overview of PDA and helpful approaches. PDA Society training facilitators who are also parents of PDA young people answer common questions around the topics below, sharing a range of perspectives and lived experience: What is PDA? Helpful approaches and changing our mindset Light bulb moments Benefits of diagnosis Masking Sensory overload School avoidance   Published by: PDA Society, August 2022   Watch on YouTube   Further information signposted in the session: Books EHCP guide Home education “hub” Education support & signposting  

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.

Helping Your Child with PDA Live a Happier Life

Drawing on the author's personal experience of parenting a child with PDA, this insightful and informative guide offers strategies and tips for all aspects of daily life, including sensory issues, education and negotiation. Full of information and support, this book is not intended to provide information on how to change your children. Rather, it is focused on creating the type of environment that will allow children to be authentically themselves, thereby enabling them to flourish and thrive.   Author: Alice Running Publisher: Jessica Kingsley Publishers   Find on publisher's website

The Adventures of Pickle

To most people, a pebble on the beach is just that – a pebble. For a little girl with Pathological Demand Avoidance, it’s much more and a very special bond is formed. To help with her anxiety, the little girl chooses Pickle the pebble to accompany her through all that life throws at her, becoming her soothing sensory friend. Light-hearted and sometimes emotional, this book is based on a true story. The Adventures of Pickle explores the roller-coaster ride that the whole family (including the little black dog!) goes through when faced with this little-understood part of the Autism Spectrum.   Author: Zelda Mothins Illustrator: Hattie Hyder   Find on Amazon

Jim’s story

Jim is a 33 year old PDAer and has worked at Waitrose for 7 years. He likes to raise awareness of PDA and share his story so that parents know that things can turn out well for their child despite how challenging circumstances may be along the way. Jim also shares details of his time at school, masking, developing the skills to live independently and his love of writing and driving. I’ve been working at Waitrose for seven years. It was my Mum who suggested I apply for the job originally because Waitrose is known for being inclusive and taking care of its staff, and because the store where I work is local to me. I worked my way up, starting with a few hours on a Saturday, then taking on some evening shifts. When a full-time worker left, my manager was delighted for me to take over the role. To feel valued and be called a ‘key player’ at work is really special. People wonder how I cope with being told what to do. I do still have a bit of a feeling inside when I’m told to do things, but I’m very meticulous and pre-prepare things to make sure [...]

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.  

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

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.  

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 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 [...]

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

Home education “hub”

Elective home education - helpful approaches & resources for PDA This resource consists of helpful approaches and resources to support parents who are home educating PDA children and young people. For general guidance and legislation about elective home education (EHE) in the UK please visit the relevant government website for your country below … England Wales Scotland Northern Ireland … and organisations such as Educational Freedom, Education Otherwise, Home Education Scotland and Home Education Northern Ireland also offer information, guidance and support to home educating families in the UK (including the deregistration process). Other national and local home education support groups can be found online and on Facebook too and can be invaluable as a support network (groups suggested to us are listed below, under resources). PDA Home Education is a third party run Facebook group specifically for people who are (or are considering) electively home educating a PDA child. It’s a helpful forum for sharing ideas and experiences and for supporting each other. Helpful approaches The suggestions below are not exhaustive; there are no limits on the way learning can be achieved when you electively home educate and home education can look very different from family to family and person to person so [...]

Transition to adulthood

When we think about transitions we naturally think about the big transitions like leaving school or transferring from primary to secondary school. But transitions of any kind, at any time, may be difficult for PDA individuals. Starting a new club or activity, leaving home in the morning to go to school or work, even moving from their bedroom to the kitchen, can be extremely difficult for some. Transitions are a demand. This page focuses on transitions to adulthood, i.e. beyond age 16. It’s good practice for schools to start thinking about transition for SEND children from year 9 (age 14). For children with an EHCP, this will start at the Y9 annual review and a Transitions Team Social Work should be invited to attend alongside the parents, school, local authority and any other relevant professionals involved with a child. The options for post 16 are: Sixth form College Apprenticeship – children with an EHCP may be able to access a supported internship programme Work – please see our workplace adjustments for PDA page and this Transition to employment toolkit by Ambitious about Autism Or a child may need support from Social Care to find meaningful activities or voluntary work, and some may [...]

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.

Understand Me

Understand Me: An inspiring journey of a boy with PDA 9 year old Spencer recalls his struggles at mainstream school and takes us on a journey of his experiences whilst going through diagnosis and the EHCP process to a successful specialist placement. Spencer’s feelings of isolation and sadness, and his longing to be understood and accepted, are recounted in his own powerful words. This book will be an inspiration for children, parents and teaching professionals who are living and working with a PDA profile of autism. Spencer's Mum (Katie Stott) has also written and published a book - Life on an Alien Planet: A PDA boy and his journey through the education system. Author: Spencer Stott Publisher: Independently published   Find on Amazon

Mapping educational experiences

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

Preventing School Exclusion

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