Self-help

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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  

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? 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.

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, [...]

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    

Demand-Anxiety Cycle: resource template

A tool to help young people, parents & professionals understand demand avoidance and talk together. Tick boxes that apply, write on it, or edit the document…. Whatever works for you.   Download editable template   A third party German translation of this document (by a German parent of a PDA child) is also available here. Please note: the PDA Society is not able to verify the accuracy of translations listed on our website.  

What PDA means to me – editable resource

This resource was created to help a child going from being home-schooled into a special school, but could be used in many other situations. It lists traits like high anxiety, impulsivity and demand avoidance that made life difficult, with specific examples and thoughts on what helps. It also has space for including information about strengths, interests and so on. Created as a template to be adapted in whatever way you choose.   Completed example (pdf)   Editable version (docx)

Me and My PDA

Me and My PDA: A Guide to Pathological Demand Avoidance for Young People This beautifully illustrated guide helps young people with Pathological Demand Avoidance (PDA) to understand their diagnosis, develop self-awareness and implement their own personalised problem-solving strategies. Written in consultation with young people with PDA and their families, this book recognises the importance of handing control back to the young person, and that there is no one-size-fits-all PDA profile. Readers are encouraged to engage throughout with interactive writing, doodling and checklist exercises to explore their own particular characteristics, strengths and challenges. Me and My PDA is sensitively tailored to the needs and experiences of young people (aged 10+) with PDA. The guide is designed to grow with the reader, and can be used for many years as the young person develops and changes - making it invaluable to PDA-diagnosed individuals and their families. Authors: Glòria Durà-Vilà and Tamar Levi Publisher: Jessica Kingsley Publishers   Find on publisher's website

PDA by PDAers

PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns This book is a collection of genuine insights and experiences from people living with PDA, adapted from their interactions on a popular online support group. It includes frank discussions of topics relevant to PDA, including work, relationships and managing meltdowns, making it a vital resource for both individuals and professionals. Author: Sally Cat Publisher: Jessica Kingsley Publishers   Find on publisher's website

The Incredible 5-Point Scale

This much-awaited second edition of the popular Incredible 5-Point Scale is significantly improved and expanded. Using the same practical and user-friendly format as the first edition, Buron and Curtis let readers benefit from work done with the scales over the past 10 years, to result in refinements to the original scales, now considered classics in homes and classrooms across the country and abroad, as well as lots of new scales specifically designed for two groups of individuals: young children and those with more classic presentations of autism, including expanded use of the Anxiety Curve.  Another welcome addition is a list of goals and objectives related to incorporating scales in students IEPs.   Authors: Kari Dunn Buron and Mitzi Curtis Publisher: AAPC Publishing   Find on SEN Books