Professionals
Found 54 listings
Parental Blame and the PDA Profile of Autism
This report presents the findings of a survey of 1016 parents and carers of PDA children.
The aims of the survey were:
to explore how prevalent parental blame is among families with PDA children
to identify any patterns around when, how and why parental blame manifests
to find out if [...]
Mapping experiences of PDA in Ireland
Mapping experiences of pathological demand avoidance in Ireland.
This national study sought to gather the viewpoints of PDA individuals, families, and practitioners, with the intention of determining levels of knowledge, recognition and understanding of PDA; exploring current pathways to assessment and diagnosis; capturing experiences of access to education and healthcare [...]
The Panda on PDA
In this positive, gentle and PDA-friendly guide for young children, PDA is explained by a playful Panda who is PDA and very proud of it. The Panda is full of talents and strengths, but finds it very hard to do what others want. In fact, the Panda has become [...]
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 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 [...]
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)
[...]
Extreme Demand Avoidance in Children: Refinement of a Caregiver-Report Measure
Extreme Demand Avoidance in Children with Autism Spectrum Disorder: Refinement of a Caregiver-Report Measure
For anyone involved in either research or in the assessment of neurodevelopmental conditions, this adaptation of the EDA-Q will be of interest. Called the EDA-8, it is a refined and simplified scale that benefits from the [...]
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 [...]
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 [...]
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 [...]
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 [...]
The Teacher’s Introduction to Pathological Demand Avoidance
Essential Strategies for the Classroom.
This essential guide for working with PDA pupils outlines effective and practical ways that teachers and school staff can support these pupils, by endorsing a child-led approach to learning and assessment.
Beginning with an introduction to PDA and how it can affect the education experience, it [...]
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 [...]
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 [...]
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:
[...]
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 PDAers and PDA Society team members.
Available to watch and share below or [...]
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 [...]
The Extreme Demand Avoidance Questionnaire (EDAq)
The ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q) was developed to measure behaviours reported in clinical accounts of extreme/‘pathological’ demand avoidance (PDA). The questionnaire allowed these traits to be measured consistently for research purposes. The EDA-Q should not be considered a diagnostic test.
In the study of parent-reported behaviours in children and [...]