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Found 46 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 [...]
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 [...]
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 [...]
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 [...]
PDA best practice – the professional voice
PDA best practice - what the professionals would like you to know
24 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 videos created for PDA Day 2021 that share best practice about [...]
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 [...]
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 [...]
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:
[...]
PDA in the Therapy Room
PDA in the Therapy Room: A Clinician's Guide to Working with Children with Pathological Demand Avoidance.
This guide sets out the most effective strategies for clinicians to provide the best care for children with PDA, adapting conventional modes of therapy to suit their needs. Methods include indirect techniques such as [...]
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 [...]
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 a wonderful group of PDAers and PDA Society team members.
Published by: PDA [...]
EHCP guide
Education, Health and Care Plans to support a PDA profile of autism.
An Education, Health and Care Plan (EHCP) is a document used in England to outline a child or young person’s special educational needs (SEN) and the provision that should be made to meet those needs.
Not every PDA child [...]
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 [...]
Identifying features of ‘PDA’ using the Diagnostic Interview (DISCO)
Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)
This paper discusses the Diagnostic Interview for Social and Communication Disorders (DISCO) and existing items within the model which are more specific to PDA when compared to the rest of the autism spectrum. It [...]
Disorders in childhood: Overview for paediatricians
Behavioural and emotional disorders in childhood: A brief overview for paediatricians
This is a review of all relevant published literature relating to behavioural, emotional and developmental problems in children and adolescents. It is intended as a guide for clinicians and aims to raise awareness of the importance of recognising and [...]
National Autistic Society PDA resources
Here are links to the National Autistic Society's PDA resources:
Pathological Demand Avoidance (PDA)
Network Autism resources
What is Pathological Demand Avoidance? An adult's perspective
Pathological demand avoidance: an interview with Ruth Fidler and Phil Christie
PDA and mental health
Meeting the educational needs of pupils with PDA
Top [...]
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 [...]
Articles
The most recent PDA articles published in professional publications and on national support websites.
Understanding PDA - Jilly Davis - TeachWire (for education professionals) November 2021
BPS Newsletter PDA blog - Dr Sarah Glew and Dr Anita Marsden, clinical psychologists in community paediatrics, East Sussex Healthcare Trust (Originally published [...]
Keys to care
A single page information sheet for supporting and helping someone with a PDA profile. 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 [...]
Practice Guidance for Professionals – Ireland
The 'Mapping Experiences of PDA in Ireland Study', Doyle and Kenny, was published in 2020.
A report describes the research and findings in detail.
In addition, the study resulted in the development of a series of seven practical and appealing advice sheets for professionals and parents. They have been published by PRISM [...]
Pathological Demand Avoidance: summary sheet
A one-page explanation of the PDA profile, produced by the PDA Development Group and published in June 2016. It describes the main features and the key approaches to supporting a PDA person. Please note that the PDA Development Group no longer meets.
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Good diagnostic assessment – children
This information has been produced by the PDA Development Group, August 2017. The PDA Development Group is an informal group comprised of representatives from the NAS and PDA Society and individual practitioners with an interest in PDA from a range of disciplines (education, paediatrics, psychology, research) working in both [...]
AET National Autism Standards
This extensive paper entitled 'The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice' was written by Phil Christie and originally published in the Good Autism Practice Journal. It is reprinted by the Autism Education Trust (AET) to accompany their National Autism [...]
New Approach to FII
The Need for a New Approach to the Identification of Fabricated and Induced Illness
This discussion paper lays out some of the difficulties with the current approach to identifying Fabricated and Induced Illness (FII) and calls upon the Royal College of Paediatrics and Child Health (RCPCH) to review the evidence [...]
PDA in Ireland
Mapping Experiences of Pathological Demand Avoidance in Ireland, Executive Summary
Doyle and Kenny 2020
This initial summary reports the findings of the study funded by the Irish Research Council, and conducted by researchers from Dublin City University, Institute of Education, Neil Kenny and Siobhan McNally, and Alison Doyle of Caerus Education.
The [...]
Being Misunderstood – 2018 Survey
Experiences of the PDA Profile of ASD
Education, health and social care services are designed to be 'needs-based' and 'outcomes-focused'.
While the intention is clear, there is a group of autistic people whose needs are frequently not identified in detail, not understood in practice and not fully communicated between professionals. As [...]
NDTi – short introduction to PDA (2019)
NDTi has partnered with the PDA Society to help raise awareness and increase understanding of PDA – a profile on the autism spectrum.
Following the high profile programme File on 4 about Transforming Care, featuring the story of 17 year old Bethany who has PDA traits, it was felt that [...]