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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 [...]

Summary of peer research into PDA by Sally Cat

This blog post covers Sally Cat's motivations for carrying out peer research on PDA, including the evidence and knowledge gaps that she wanted to help fill. It summarises two different pieces of peer research she has conducted: Her 2016 'Big Traits' study, which took a list of potential PDA traits created by peer suggestions, and tested their prevalence with PDA people and non-PDA autistic people. Analysis (some of which was conducted by Grace Trundle, a PhD student at the University of Nottingham), showed significant differences between these two groups for the majority of the traits, with the PDA group scoring higher in every instance. Sally Cat also disaggregated the results by gender, a process that highlighted some markedly different female and male experiences for some of the traits.   Her 2018 Masking and Social Mimicry peer study, which aimed to investigate the nature of masking for PDA people. Participants included PDA people and non-PDA autistic people, as well as non-autistic people. More than half of participants in the PDA group felt their masking was hardwired and automatic. PDA and non-PDA autistic females were more likely than PDA males to think of their masking as automatic.   Sally Cat concludes by highlighting the [...]

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

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, [...]

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 [...]

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

Individual differences, ADHD, Adult Pathological Demand Avoidance and delinquency

Individual differences, ADHD, Adult Pathological Demand Avoidance and delinquency In this paper, Egan et al looked at a range of different characteristics of a group of adults to analyse how PDA might fit with other described conditions. They used the EDA-Q developed in their previous work as a self-report tool for adults (EDA-QA; Egan et al 2018) and invited adults who identified themselves as having PDA to complete it and a number of other surveys including personality traits. As a forensic psychology department, they were interested to learn more about the construct and how it might relate to the potential for criminal behaviour, or ‘delinquency’. The results showed that for community adult populations, self-reported individual differences in ADHD, emotional instability, and antagonism appear to better predict the PDA than ASD. They went on to suggest that the association PDA has with delinquency may reflect these constructs, which are also correlates of offending. The results are interesting and appear to be a challenge to clinical experience. The EDA-Q is known to capture those who are extremely demand avoidant for a range of reasons, so to repeat this work within a clinical cohort would be a useful next step.   Authors: Vincent Egan, Elinor Bull, and [...]

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 [...]

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

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 [...]

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

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.  

Pathological Demand Avoidance Explained

Pathological Demand Avoidance Explained. Available in paperback and as a Kindle/E-Book. What is PDA? What does it feel like? What does it involve? PDA stands for 'pathological demand avoidance'. It describes a neurotype (type of brain) which is classed as part of the autism spectrum. There's more to PDA than avoiding things. This book describes what PDA is using simple words and pictures. Author and illustrator Sally Cat is an adult PDA author, artist and blogger. She has posted hundreds of graphic memes describing PDA on her popular Facebook page. This book uses the same format to communicate the lived experience of the condition in an easy to understand way via 75 memes. The topics covered are PDA avoidance, control-need, anxiety, intolerance of uncertainty, social mimicry & masking, emotions, overload, meltdown & shutdown, school and adult life. Royalties for the book are kindly donated directly to PDA Society.   Author: Sally Cat   Find on Amazon

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.

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.

Support for PDA adults

This page signposts some sources of useful information and support for PDA adults and their families. 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. Please note: The National Autistic Society provides lots of information, guidance and support for adults on the spectrum – whilst this may need some adaptation for PDA, the principles will remain the same. Where links are listed below, an * is included as a reminder that some adjustment may be needed to take account of demand avoidance. ​PDA specific support PDA Society Enquiry Line Service PDA Society Forum Support groups: please see details of online support groups for PDA individuals and families of PDA adults here. Helpful approaches Please see self-help, coping strategies & therapies page. For parents, [...]

PDA-related suggestions for healthcare passports

The National Autistic Society has created a health passport template that you can either complete online and print out, or print out and complete by hand, for yourself, your child or someone you care for. There is also helpful guidance on the National Autistic Society’s website about how to fill in the template. We've put together some suggestions that may be helpful to include in relation to a PDA profile of autism which are designed to be used in addition to, and should be read in conjunction with, the National Autistic Society’s guidance. You can pick and choose from the suggestions to just include the points that are relevant for you. There’s also this quick ‘COVID-19 Grab and Go’ version (and accompanying guidance) you could use.   View suggestions   Further information Keys to care - one page information sheet about PDA and helpful approaches What is PDA? booklet

Helpful approaches infographic: PANDA approaches

This infographic illustrates the key approaches which are helpful in working with, understanding and supporting an PDA person. Conventional support strategies, including those often recommended for autism, are often ineffective and counter-productive with a PDA profile of autism. In place of structure, routine, firm boundaries, praise, rewards/consequences, is a person-centred approach based on negotiation, collaboration and flexibility. The PDA Panda symbolises the need to tailor the environment to meet needs and the P-A-N-D-A mnemonic is a simple reminder of helpful approaches.   Published: PDA Society, 2019 and updated, 2021 Download PDF   Further information: Self-help approaches - adultsHelpful approaches - children    

Keys to care

A single page information sheet for supporting and helping a PDA person. Ideal for those working with individuals whose care-needs have been identified as relating to demand avoidance. Useful as a grab-sheet for members of staff - a regular reminder of what can help. Also helpful for family members or individuals who are trying to explain the essence of a PDA profile to those who care for them.   Published by: PDA Society   Download this PDF   A third party German translation of this resource is also available here.

Workplace adjustments: employers’ guide

Businesses and employers are increasingly recognising the benefits of employing autistic people, but much more still needs to be done. The Chief Executive of the National Autistic Society recently said “most autistic people who want to work aren’t able to work” because conventional roles and workplaces can present many challenges. The PDA Society offers some suggestions about reasonable adjustments to workplaces and work patterns to accommodate a PDA profile of autism in the Adult Life section. There is also a 2-page guide available.   Download the guide

Tim’s Top Tips: ideas for adults

Tim Collins is an adult who was recently diagnosed with PDA. Along with sharing his story with us (please see his case study) he has kindly created a list of Top Tips designed to help adults navigate their way through life. Daily life Keep a notepad and pencil handy at all times to jot down your thoughts. This reduces the pressure to remember everything and you can review your ideas at a time to suit you. Make a daily list of tasks then categorise them as important (e.g. making appointments or shopping) or ‘nice to have’ (non-essentials such as baking a cake or taking the dog for an extra walk). Select only three tasks from the list that you will carry out and cross the rest out. If there are too many important tasks to carry out then the ‘nice to have’ items can be saved for another day. Make time for ‘normalising activities’ which allow you to de-stress and empty your personal ‘capability tank’. I like to listen to music, go for a peaceful walk or cycle and even vacuum the house! Schedule gaps between meetings at work to allow for this mental re-charging time. Practice mindfulness- I prioritise [...]

Self-help, coping strategies and therapies for adult PDAers

These suggestions for self-help, coping strategies and therapies were assembled from a variety of first-hand accounts shared by adults, diagnosed or self-identifying as having a PDA profile (PDAers being their preferred term of reference), in books, blogs and on social media and from the other information for adults on the PDA Society website. A PDF version of this resource is also available to download here   View resource    

Adults: PDA & mental health

The following is a summary of Dr Judy Eaton's talk at the PDA Society Conference in Birmingham on 18th April 2018 Judy opened by sayings that people often ask her “what is this PDA? There was never this PDA when we were younger. Where were all these people?”. Her response is that actually they have always been there, and that she has found it both interesting and a privilege to talk to adults with PDA about their experiences. Introduction Judy shared a case study to highlight the need for early understanding of PDA and the urgent need to educate other professionals about the condition, particularly those working in adult services: James, a 41 year old man whose parents now feel PDA accurately describes, had received a diagnosis of autism as a child. Since leaving his specialist residential school for children with autism, where he was bullied, assaulted and was very unhappy, he has been sent to two different prisons and 7 different secure hospitals. He was placed under section 37 of the Mental Health Act, and subsequently detained under section 3 of the Mental Health Act with other patients who required very different management regimes to him. He was often very vulnerable and [...]