Parents/Carers

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 [...]

The PDA-Saurus

The PDA-Saurus has decided to embark on an adventure to find her autonomy, but will she find it? Come along on her journey of self discovery, as she meets new friends and discovers who she really is. This book invites PDA children into a world where they can see themselves validated and understood. This book can help children understand their PDA but also gives parents, caregivers, and teachers tips on supporting PDA children. Author: Sophie Cook Published: June 2023   Find on Author's website

Understanding PDA: For Kids & Grown Ups

'Understanding PDA: For Kids & Grown Ups' is a book about Pathological Demand Avoidance (PDA), from the perspective of a little boy called Ethan. Ethan shares his personal experiences with PDA, and how it affects his ability to handle certain demands and expectations. The book offers valuable insight and helpful tips for those who want to support PDA individuals. It is hoped that readers will gain a deeper understanding of PDA, and encourage the world around PDA people to better support them. Author: Stacey Freeman, Max Freeman & Jay Freeman Published: 15 June 2023 Find on Amazon

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, [...]

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

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  

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, [...]

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 [...]

Eating Disorder Support

This page signposts some sources of useful information and support regarding eating disorders. The PDA Society takes considerable care to check the services that we signpost, however we’re not responsible for the quality, experience or outcomes from third party organisations. When accessing services and support, it is likely that you’ll need to share information about the PDA profile of autism and what approaches are helpful with PDA with all the people (including clinicians) you are in contact with – please feel free to print off or send links to any of the information on our website. We’ve also put together some PDA-related suggestions for healthcare passports. PDA-informed resources 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 [...]

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

The Family Experience of PDA

An Illustrated Guide to Pathological Demand Avoidance. Eliza Fricker gets it. Describing her perfectly imperfect experience of raising a PDA child, with societal judgements and internal pressures, it is easy to feel overwhelmed, resentful and alone. This book's comedic illustrations explain these challenging situations and feelings in a way that words simply cannot, will bring some much-needed levity back into PDA parenting. Humorous anecdotes with a compassionate tone remind parents that they are not alone, and they're doing a great job. If children are safe, happy, and you leave the house on time, who cares about some smelly socks? A light-hearted and digestible guide to being a parent to a PDA child covering everything from tolerance levels, relationships and meltdowns to collaboration, flexibility, and self care to dip in and out as your schedule allows to help get to grips with this complex condition. This book is an essential read for any parent with a PDA child, to help better understand your child, build support systems and carve out some essential self care time guilt free.   Author: Eliza Fricker Publisher: Jessica Kingsley Publishers   Find on Amazon

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

Helpful approaches for parents/carers

This 2 page information sheet provides a summary of PDA helpful approaches for parents and carers. Autism and the PDA profile are ‘dimensional’ – meaning they vary a lot from one person to another and at different times or with different people – so parents/carers need a ‘toolkit’ of helpful approaches, tailored to each child, applied flexibly and reviewed regularly. This resource covers: The PANDA Adjusting your mindset Support tips Optimising the environment Being cautious with rewards/praise/sanctions Reducing the perception of demands   Download sheet   For more detailed information please see: Helpful approaches – children.

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.

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

How to Cope When Your Child Can’t

How to Cope When Your Child Can't: Comfort, Help and Hope for Parents This book combines stories from parents, whose children have experienced difficulties and distress for a variety of reasons, with information from psychological research. It signposts resources and techniques that can help parents to cope with their own feelings and struggles. Some of the strategies outlined include problem solving, emotional regulation, coping with stress, acceptance and there are also tips and activities that helped other parents cope. Please note: This book contains stories about eating disorders, self-harm, suicide, bullying, distressed behaviours and addiction. This book draws on the experiences of people parenting children with a range of different needs. Given this, some of the examples may not be suitable for parents of PDA children or adaptations may be needed.   Authors: Roz Shafran, Ursula Saunders, Alice Welham Publisher: Little, Brown Book Group   Find on Amazon

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  

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  

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 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.  

Pets and PDA

For some people, owning a pet greatly improves both their mental and physical wellbeing - research shows interacting with animals reduces blood pressure, lessens anxiety and improves social interactions. Many autistic individuals and their families find pet ownership particularly beneficial. A study by Lincoln University, for instance, found that autistic children experienced fewer meltdowns, and their parents felt less stressed, if a dog was nearby. For others, however, pet ownership comes with too many challenges. As with all things, there’s no ‘one size fits all’ approach. This resource includes the responses to our survey about PDA and animals carried out in February/March 2021 some tips and information relating to pets and PDA a case study sharing the benefits Sarah, an adult PDAer, gains from her assistance dog Millie-Bear. Survey results 94% of respondents own, or have owned, a pet. 50% of these were dogs and cats (in line with UK average pet ownership) with a wide range of other pets and animals: Benefits 92% respondents find pets beneficial in a range of different ways … Sensory benefits Pets of all sizes can (often unknowingly) deliver deep pressure therapy. The body weight of an animal activates the parasympathetic (rest and digest) nervous system and helps to reduce [...]