Social care
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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
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 guidance for individuals and families.
We hope this resource will be informative and useful for all involved in identifying and assessing neurodevelopmental conditions in children and adults, as well as other healthcare, social care and education professionals.
A web-version is also available to view here and printed copies are available to order here.
Here’s a letter/email template which can be used to inform clinicians and autism teams about the practice guidance.
Published by: PDA Society, January 2022
Download Practice Guidance
A third party German translation of this resource is also available here.
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 for professionals from all sectors including healthcare, education, social care, the law, therapists, counsellors, advocates and policy makers.
Available to listen to as a podcast here or via the player below.
A transcript is also available here.
Published by: PDA Society, May 2021
Podcast
Listen on Anchor FM
The second resource in the series shares the PDA community's voice letting us know about professionals who've made a positive difference and highlighting what they'd like you to know about PDA and what helps.
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 shares the PDA community’s voice, following a survey asking about experience of professionals who’ve made a positive difference and inviting comment on what they’d like others to know about PDA and what helps.
A transcript of this video is also available here.
Published by: PDA Society, May 2021
Watch on YouTube
The second resource features professionals from a range of sectors who explain why they feel it’s important to identify the PDA profile and share their own best practice tips.
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 to an ATU. Despite PDA being recognised relatively early in the process, none of her care was PDA-informed, leaving Beth’s anxiety and distressed behaviours to escalate and escalate over many years. Jeremy embarked on a high-profile media campaign, but despite this and the high-level meetings and reviews that ensued, her situation worsened. Eventually a review involving an autistic advocate led to a happy ending, with Beth finally being well-supported in a bespoke community placement.
Beth was a much-wanted and much-loved daughter, the first girl in the family for many years. As a baby, however, she was hard to settle, slept little and wanted to feed constantly. The social and sensory demands of toddler group proved tricky for Beth, and we felt like ‘meerkat’ parents constantly on edge, looking out for potential triggers.
As soon as she started at nursery school, her behaviours escalated considerably – she was very controlling towards other children, [...]
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:
Surrey
East Sussex
Alder Hey Children's NHS Foundation Trust
Examples of PDA being acknowledged include:
Rotherham, Doncaster and South Humber NHS Foundation Trust – CAMHS
Northamptonshire Heathcare NHS Foundation Trust
These position statements and acknowledgements of PDA clearly illustrate how it is possible for local authorities, and supporting organisations, to acknowledge and flag up the PDA profile in diagnosis reports, as a signpost to appropriate support, whilst still working within the guidelines of the DSM-5-TR and ICD-10 diagnostic manuals.
As has been the case with Alder Hey Children's Hospital, it is hoped that local authorities who do accept the validity of the PDA profile of autism, will invest in commissioning PDA specific training to improve outcomes for PDA individuals.
The PDA Society feels this is a very positive step in the right direction for greater understanding, awareness and acceptance of the PDA profile, and hope that both children and adult services in other local [...]
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 avoidance in PDA
Helpful approaches
Further information
We hope this is a helpful introduction and helps to put PDA on everyone's radar.
Published by: PDA Society, Jan 2021
Watch on YouTube
Related resources:
Introduction to PDA (2021) Hungarian translation
Transition to adulthood
When we think about transitions we naturally think about the big transitions like leaving school or transferring from primary to secondary school. But transitions of any kind, at any time, may be difficult for PDA individuals. Starting a new club or activity, leaving home in the morning to go to school or work, even moving from their bedroom to the kitchen, can be extremely difficult for some. Transitions are a demand.
This page focuses on transitions to adulthood, i.e. beyond age 16.
It’s good practice for schools to start thinking about transition for SEND children from year 9 (age 14). For children with an EHCP, this will start at the Y9 annual review and a Transitions Team Social Work should be invited to attend alongside the parents, school, local authority and any other relevant professionals involved with a child.
The options for post 16 are:
Sixth form
College
Apprenticeship – children with an EHCP may be able to access a supported internship programme
Work – please see our workplace adjustments for PDA page and this Transition to employment toolkit by Ambitious about Autism
Or a child may need support from Social Care to find meaningful activities or voluntary work, and some may [...]
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 via our YouTube channel here.
Published by: PDA Society, January 2021
Further information
Also available in this series are our What is PDA? information sheet and What is PDA? booklet.
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 or young person will have, or need, an EHCP but for those who do, these examples of good practice will hopefully provide a starting point for families and professionals. In addition, you would not expect an EHCP to cover all the areas identified here; just those which would be of most help for each individual child/young person. This resource intends to provide you with a ‘database’ of possibilities.
This resource has been compiled from suggestions from both families and education professionals supporting PDA children and young people and in consultation with our PDA adult panel. Many of these suggestions are useful for anyone who would benefit from an EHCP and some relate more specifically to demand avoidance.
Published by: PDA Society
First version: January 2021
Second version: July 2021
View guide
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, [...]
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 in the template.
We've put together some suggestions that may be helpful to include in relation to a PDA profile of autism which are designed to be used in addition to, and should be read in conjunction with, the National Autistic Society’s guidance.
You can pick and choose from the suggestions to just include the points that are relevant for you.
There’s also this quick ‘COVID-19 Grab and Go’ version (and accompanying guidance) you could use.
View suggestions
Further information
Keys to care - one page information sheet about PDA and helpful approaches
What is PDA? booklet
Keys to care
A single page information sheet for supporting and helping a PDA person. 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 members or individuals who are trying to explain the essence of a PDA profile to those who care for them.
Published by: PDA Society
Download this PDF
A third party German translation of this resource is also available here.
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.
View Summary
PDA: Why social workers need to know
Pathological demand avoidance: what is it and why do social workers need to know?
Cathleen Long explains how an understanding of this part of the autism spectrum can help support parents.
This article was published in Community Care - a leading online resource for social workers, in May 2019. It describes why mothers of PDA children can be wrongly accused of perpetrating Fabricated and Induced Illness (FII), and explores the case of Janet and Lucy, who endured two years of child protection meetings, with Jane's parenting repeatedly called into question.
It concludes, parenting a child with a PDA profile of autism can be exhausting and so often, as well having their parenting style scrutinised, parents/carers are left feeling they are ‘wrong’, when the reality is many professionals have much to learn about PDA.
Author: Cathleen Long
Publisher: Community Care
Read full article
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 and the effects of their current policy.
It is an initiative from a group of professionals working in clinical practice, social work and parental support. It is hoped it will form the basis for discussion with professionals across disciplines and from across the country.
Download discussion paper
Please contact us for further information.
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 it would be helpful for more people, particularly Commissioners, to be aware of PDA. As part of this work, we’ve recorded an introductory webinar. You can watch it below.
This introductory webinar is about Pathological Demand Avoidance. Vikki Threlfall, who presents, is a trustee of the PDA Society. This short presentation provides a quick overview of PDA and signpost resources for further information.
Autism is a widely recognised term, but understanding the full extent of what the condition means in practice is still very much evolving. Those with comparatively rare presentations of Autism, such as Pathological Demand Avoidance or PDA, are at particular risk of being misunderstood. This can lead to extremely poor outcomes – 70% of children with a PDA profile aren’t in school or regularly struggle to attend, school and care placements often break down, and years of being misunderstood can lead to mental health problems – so it’s really important for [...]
Support for parents & carers
This page signposts some sources of useful information and support regarding health, social care, justice, benefits and more.
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.
PDA specific support
PDA Society Enquiry Line Service
PDA Society Forum
Local PDA support groups
Online PDA support groups
Training
Recordings of our past Q&A sessions, where guest speakers with lived experience answer questions about PDA and specific topics, are available to purchase for 30 days via our training hub
Mental Health
Your first step in terms of accessing mental health support would normally be to contact your GP who will be able to refer you on to the relevant services, such as CAMHS (Child & Adolescent Mental Health Services). The following links may [...]
Understanding Pathological Demand Avoidance Syndrome in Children
A Guide for Parents, Teachers and Other Professionals
The first book ever written about PDA - it gives a comprehensive overview for everyone with an interest in the subject. It was written collaboratively by professionals and parents.
This straightforward guide offers a complete overview of Pathological Demand Avoidance Syndrome (PDA) and gives practical suggestions for overcoming the difficulties it poses in a wide range of contexts from diagnosis through to adulthood. Starting with an exploration into the background of PDA that answers many of the immediate questions triggered when a child is first diagnosed, the book goes on to look at the impact of the condition on different areas of the child's life and what can be done to help. The authors present useful information on early intervention options and workable strategies for managing PDA positively on a day-to-day basis. They also examine ways to minimize common difficulties that may be encountered at home and school, making life easier for the child, family and peers. The final chapters tackle new problems that can arise when the teenage years hit and how to assist a successful transition from adolescence to adulthood. Illustrative case examples are included throughout, and the book concludes with [...]
Can I tell you about Pathological Demand Avoidance syndrome?
Can I tell you about Pathological Demand Avoidance syndrome?: A guide for friends, family and professionals
Meet Issy – an 11-year-old girl with pathological demand avoidance syndrome (PDA), a condition on the autism spectrum. Issy invites readers to learn about PDA from her perspective, helping them to understand how simple, everyday demands can cause her great anxiety and stress. Issy tells readers about all the ways she can be helped and supported by those around her.
This illustrated book is for readers aged 7 and upwards, and will be an excellent way to increase understanding about PDA in the classroom or at home. It also includes practical tips and recommended resources for parents and professionals.
Authors: Ruth Fidler and Phil Christie
Illustrated by: Jonathon Powell
Publisher: Jessica Kingsley Publishers
Find on publisher's website
PDA – My Daughter is Not Naughty
Jane Sherwin's honest and uplifting account provides insight into the challenges of bringing up a child with Pathological Demand Avoidance (PDA).
After years of misdiagnosis, Jane's daughter, Mollie, was diagnosed with PDA at the age of seven, and we follow her experiences pre and post diagnosis to age 10 as she attends school, interacts with the outside world and approaches adolescence. Throughout, Jane provides commentary on her daughter's behaviour and the impact it has on her family, explaining the 'why' of PDA traits, including the need for control, meltdowns, obsessive behaviour and sensory issues. She reveals the strategies that have worked for Mollie and provides essential information on obtaining a diagnosis and raising awareness of PDA. The book also includes an interview with Mollie.
Full of information and support, and with a focus on understanding the child and how they sees the world, this book will be of immeasurable value to the parents and families of children with PDA as well as the professionals working with them, particularly teachers and teaching assistants, SEN co-ordinators, psychologists, outreach workers and social workers.
Author: Jane Sherwin
Publisher: Jessica Kingsley Publishers
Find on publisher's website
The Explosive Child
A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children [Sixth Edition]
A groundbreaking approach to understanding and parenting children who frequently exhibit severe fits of temper and other intractable behaviours, from a distinguished clinician and pioneer in this field.
What’s an explosive child? A child who responds to routine problems with extreme frustration—crying, screaming, swearing, kicking, hitting, biting, spitting, destroying property, and worse. A child whose frequent, severe outbursts leave his or her parents feeling frustrated, scared, worried, and desperate for help. Most of these parents have tried everything-reasoning, explaining, punishing, sticker charts, therapy, medication—but to no avail. They can’t figure out why their child acts the way he or she does; they wonder why the strategies that work for other kids don’t work for theirs; and they don’t know what to do instead.
Dr. Ross Greene, a distinguished clinician and pioneer in the treatment of kids with social, emotional, and behavioral challenges, has worked with thousands of explosive children, and he has good news: these kids aren’t attention-seeking, manipulative, or unmotivated, and their parents aren’t passive, permissive pushovers. Rather, explosive kids are lacking some crucial skills in the domains of flexibility/adaptability, frustration tolerance, and problem solving, and they [...]
Ben’s Story
Years of being misunderstood led to one failed placement after another before Ben was eventually sectioned age 29 and spent 3 years in an ATU. His first supported living placement was too unstructured with serious repercussions for Ben’s health and wellbeing. Under the Care Act 2014, Ben’s family now manages his community care package. Their commitment, combined with new understanding of what approaches would be helpful following Ben’s PDA diagnosis, has resulted in an amazing quality of life that no one would previously have thought possible. Ben’s sister shares his story …
After years of struggling with being labelled as a naughty child and poor parenting being to blame, Ben was diagnosed with Asperger’s aged 21.
Over the next eight years all local education, supported employment and day placements, along with all relevant learning disability and mental health respite, residential and support living settings in the vicinity, were tried and failed. Every placement was set up to fail because inappropriate strategies were being used that inflamed the situation, escalated Ben’s anxiety and exacerbated his ‘challenging behaviours’. His spikey profile meant that he seemed very capable on the surface, but he didn’t have the skills to keep up with people’s expectations.
Services showed [...]