Parents/Carers
Found 82 listings
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 [...]
I’m Not Upside Down, I’m Downside Up
Welcome to my downside up life! My name is Ariana and I have something called Pathological Demand Avoidance which is a form of autism. Most people just think I'm naughty and misbehaved, but I want to show you why that's not true by telling you about what my life [...]
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 [...]
Eating Disorder Support
This page signposts some sources of useful information, support and advice 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. We’re currently developing an accreditation process for services and [...]
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 advice and support, this book is not intended to provide information on how to change [...]
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)
[...]
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 [...]
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 [...]
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 [...]
Strategies and support for school (letter template)
Shared with us by US-based bloggers pdaparents.com, this letter template can be used to share important strategies and support information with school, in addition to the required documents that are part of the IEP process.
It is important to read through and decide which parts apply to your child, and [...]
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 advice [...]
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 [...]
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 [...]
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 - [...]
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 [...]
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 [...]
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? [...]
Online gaming with Max Toper
Max Toper, author of “Why Is He Still Here?” and a young autistic adult with a PDA profile has kindly recorded a three-part series of videos about online gaming for our home education “hub”. He shares insight into his experiences of the gaming world to help parents and carers of [...]
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
.fusion-body .fusion-button.button-22{border-radius:2px 2px 2px 2px;}Download/print sheet
Also available in this series are our What is PDA? booklet and What is [...]
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 PDA community’s voice
PDA best practice - what the PDA community would like professionals to know
This is one of two videos 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 [...]
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 [...]
Max’s story – Why Is He Still Here? book extracts
“Why Is He Still Here?” is a memoir written by Max, a young autistic adult with a PDA profile. It’s a powerful insight into his experiences of the education system and gaming world. It's available in various formats including an audiobook, paperback and kindle edition.
We’re grateful to Max for [...]
Local position statements and information 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:
[...]
The Great Minds Podcast: PDA Society
PDA Society trustees Paula Webb & Vikki Threlfall chat with Emma and Meg from Great Minds Together about lots of topics including terminology around PDA, helpful approaches, differences between ODD & PDA, EHCPs, working with professionals and more.
.fusion-body .fusion-button.button-26{border-radius:2px 2px 2px 2px;}Listen to the podcast
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 [...]
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 [...]