PDA Society Resource
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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 [...]
What learning about PDA meant to me
To close PDA Action Week 2023 we’re sharing the short but powerful videos Team PDA members sent us about the difference hearing about PDA made to them.
Thank you to everyone who shared their experiences for this video, highlighting how important it is for PDA to be recognised and understood [...]
Letter/email template: Identifying & Assessing PDA Practice Guidance
In 2022 the PDA Society collated the professional practice and experience of a multidisciplinary group of professionals and published ‘Identifying & Assessing a PDA profile – Practice Guidance’ for clinical practitioners and other professionals who are involved in neurodevelopmental assessments.
Here’s a letter/email template which can be personalised and used [...]
Email template for informing others about PDA
Here’s an email template which can be used to inform the people and professionals in your life about PDA and the approaches that help. We hope this will help everyone to be better understood and supported.
This information sheet can also be downloaded and attached to the email and we’ve [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
PDA for social care professionals (webinar)
In this webinar about PDA (Pathological Demand Avoidance) for social care professionals, independent social workers Cathie Long, Mary Cartlidge and Rachel Gavin join PDA Society Trustee Vikki Threlfall.
The webinar includes presentations about:
assessing PDA in children and working with families in accordance with relevant guidelines and legal requirements (Mary)
[...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
Winning a Blue Peter competition – Naomi’s story
Hi, I’m Naomi (age 12), I have PDA and I recently won a Blue Peter (BP) competition!
The whole filming experience was pretty overwhelming but also gave me some amazing and life-long memories. I think PDAers find it really difficult to experience and try new things as we usually try to [...]
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 [...]
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 [...]
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 [...]
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 [...]
James’ story
James is 14 and kindly shared this extract he wrote about his experience of PDA. His insightful and honest account covers how PDA can be misunderstood; masking; school; the need to have ‘demand free’ time; the importance of trust in relationships; the impact of the Covid pandemic and what [...]
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 [...]
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:
[...]
Sources of further understanding
In addition to the information signposted throughout our website, we’d like to draw your attention to these additional sources of information, topics or fields of study which we feel are helpful in furthering understanding about PDA. This is a living list which we'll add to over time - if [...]
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 [...]
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 [...]
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 [...]