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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  

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 against those of us whose body clocks prevent us from waking and sleeping at socially-approved hours. The main purpose of this book is to tackle these wide-scale negative assumptions by increasing empathy. Additionally, the book is intended to serve as a manual for people affected, including their families. A detailed section on childhood is included for the many parents confused and exasperated by their children’s wayward sleep hours. Text book style descriptions are supplemented with research links, and sit alongside comments volunteered by real-life DSPS and Non-24 people, and a wealth of illustrations. Available on Amazon worldwide as an illustrated paperback, and text-only ebook. The ebook is free to borrow via Kindle Unlimited. Sally Cat is kindly donating royalties from this book to the PDA Society - for more info on PDA and sleep please see the results of our sleep survey in which 10% of responses indicated circadian rhythm difficulty of some sort, [...]

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 PDA-friendly. Sharon Donaldson, director of the specialist eating disorder unit where Keira was an in-patient, also shares how she and her team worked with Keira and her family to develop the personalised, holistic approach which was so key to achieving a successful outcome, and is now being shared with others as an example of best practice. TRIGGER WARNING: this case study contains information about eating disorders and distressed behaviours (including self-harm) and mention of suicidal intent. Please note that Keira’s name has been changed to protect her identity. Keira was first seen by CAMHS age 5 because of the distressed behaviours she was exhibiting, including self-harm and meltdowns. Her behaviour was attributed to ‘naughtiness’ and her parents were sent on a parenting course. However, two years later Keira was diagnosed with autism and ODD - a diagnosis that was subsequently revised to a PDA profile of autism. She was excluded from school aged [...]

Eating Disorder Support

This page signposts some sources of useful information and support 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. 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-informed resources 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 PDA-friendly. Sharon Donaldson, director of the specialist eating disorder unit where Keira was an in-patient, also shares how she and her team worked with Keira and her family to develop the personalised, holistic approach which was so key to achieving a successful outcome, and is now being [...]

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.

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 - such as being inquisitive or honest - or a challenge - such as sensory difficulties or understanding emotions. The pack also includes reusable blank cards which can be personalised. The accompanying booklet provides approaches and strategies developed by Dr Dura-Vila in her clinical practice. She also shares her personal (and occasionally humorous) experiences, including tips for discussing an autism diagnosis. These accounts within inspire readers to give their best to any young person when sharing an autism diagnosis, and in the conversations that follow.   Authors: Glòria Durà-Vilà (Author), Rebecca Tatternorth (Illustrator) Publisher: Jessica Kingsley Publishers   Find on publisher's website  

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 instead thoughtfully give them information to help them make important discoveries in the moment. These moments build resilience, flexibility, and positive relationships over time. You might be a therapist or a teacher, or you might be a parent, grandparent, or babysitter. Your child might have a diagnosis such as autism, Asperger’s Syndrome, ADHD or Non-Verbal Learning Disability. But they might not. No matter your child’s learning style, this book was written to help you feel equipped to make a difference, simply by being mindful of your own communication and speaking style.   Author & Publisher: Linda K. Murphy   Find on Amazon

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 such as myself often use what is known as a mask to hide emotions and avoid demands. Find out more in this video. A transcript of the video is also available here. More about James' experience of PDA is available to read here: James’ story.   Published by: PDA Society, July 2021   Watch on YouTube  

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 [...]

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 play-based therapy or trauma-informed approaches enabling the child to process their experiences on their own terms. With additional guidance for supporting the families of patients and addressing common obstacles, this book provides understanding and guidance for professionals making a difference to the lives of children with PDA.   Author: Raelene Dundon Publisher: Jessica Kingsley Publishers   Find on publisher's website

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

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.

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 is aimed at professionals and individuals who would like to find out more about diagnosing autism and PDA using the DISCO. The study identified eleven DISCO items that were PDA specific. A subset of individuals featuring a high number of DISCO PDA items were identified. Characteristics of individuals within this group were consistent with those previously described by Elizabeth Newson and colleagues. The paper highlights the requirement for a clinician-rated measure of PDA features and further elucidation of the PDA phenotype. Authors: Elizabeth O’Nions, Judith Gould, Phil Christie, Christopher Gillberg, Essi Viding and Francesca Happé First published online: 30th July 2015 in The European Child and Adolescent Psychiatry Journal   View paper View supplementary materials

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 diagnosing problems early on in childhood. The paper contains clear descriptions of how childhood behavioural and emotional disorders present clinically and how they are diagnosed using the universally recognised Diagnostic and Statistical Manual version 5 (DSM-5). The Extreme Demand Avoidance Questionnaire (EDA-Q) is mentioned for its value in diagnosing PDA. Challenging Behaviours (CB) are recognised to have a significant impact on an individual’s learning and social opportunities. The paper highlights potential difficulties with schooling, sleeping, family and later professional life. The prevalence and aetiology of mental health issues amongst young people with behavioural and emotional issues is also discussed. Current guidance for diagnosing and managing children with behavioural and emotional disorders is reviewed. Included are descriptions of the interventions available along with an overview of appropriate medications.   Author: Michael O Ogundele First published: World Journal of Clinical Pediatrics, February 8th 2018   View paper  

National Autistic Society PDA resources

Here are links to some of the National Autistic Society's PDA resources: Pathological Demand Avoidance (PDA) PDA - a guide for autistic adults PDA - a guide for parents and carers Pathological Demand Avoidance? An adult's perspective Post-diagnosis support - a guide for autistic adults Meeting the educational needs of pupils with a PDA profile National Autistic Society PDA Conferences Please see the National Autistic Society’s events page for information about the current year’s conference and summaries from previous conferences here: 2019, 2018, 2017, 2016.

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

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. Also available in PDF format here. BPS Newsletter PDA blog - Dr Sarah Glew and Dr Anita Marsden, clinical psychologists in community paediatrics, East Sussex Healthcare Trust (Originally published in British Psychological Society, Division of Clinical Psychology, Faculty for Children, Young People & their Families Newsletter, August 2021 and shared with kind permission) Providing PDA support - Aileen Hosty - nasen Connect www.nasen.org.uk (shared with kind permission) May 2020 Understanding PDA – Ruth Fidler & Libby Hill - The Link (speech and language magazine for schools) January 2020 PDA: Working with parents and carers - Natalie Menagh - nasen Connect www.nasen.org.uk (shared with kind permission) August 2019 Pathological demand avoidance: what is it and why do social workers need to know? – Cathleen Long - Community Care May 2019 Should PDA be recognised as part of an autism diagnosis? - Dr Gloria Dura-Vila - My Family Our Needs May 2019 The different faces of PDA - Natalie Menagh - SEN magazine March 2019 PDA: Supporting pupils  - Phil Christie - nasen Connect www.nasen.org.uk (shared [...]

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.

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 independent and statutory settings. Please note that the PDA Development Group no longer meets. What makes a good diagnostic assessment for a child with a PDA profile? - A basic guide This paper is aimed at those who may be wondering if their child’s profile of development and behaviour fits with the descriptions of Pathological Demand Avoidance (PDA). It briefly sets out some of the key issues around what a diagnosis is for, what steps are considered important in arriving at a diagnosis and current views about where PDA fits within this. The information on diagnosis found on the National Autistic Society website is also very helpful: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis PDA is now widely understood to be part of the autism spectrum. Children who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This is rooted in an anxiety-based need to be in control. What is a [...]

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.

Being Misunderstood – 2018 Survey

Experiences of the PDA Profile of Autism 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 a result, outcomes are very poor. This was the conclusion of an extensive survey of almost 1,500 people into experiences concerning the Pathological Demand Avoidance profile of Autism. It was carried out in March 2018 by the PDA Society. Key findings: The results show that very many young people with a PDA profile of Autism are finding it very difficult or impossible to cope in the school environment, and the lack of support available from services means that families are often relying on their own research to work out how to support their children. The results demonstrated the ways in which difficulties persist into adulthood, exacerbated by a continued lack of understanding and support from services. Conclusions: It is concluded that it is in the interests of everyone that professionals are empowered to see the individual and focus on improving outcomes. For this to happen there are a number of recommendations, the most important being that local [...]

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 [...]

PDA and Mental Health Issues

In this webinar, Dr. Judy Eaton from Help4Pyschology looks at aspects of mental health in both autistic children and adults, and in particular, with a PDA profile. She explores anxiety, eating disorders and the relationship with personality disorders before going on to look the opportunities for support from family and friends. She finishes with consideration of inpatient services. An extended question and answer session follows. Recorded in July 2017 Please note: this webinar was recorded in 2017, it may therefore contain some outdated language and terminology.   Watch on YouTube   More webinars by Dr Judy Eaton, hosted by Operation Diversity Academy can be found below: Intro to PDA in children ​The child with PDA as a learner ​Strategies for managing PDA and mental health

PDA and Speech & Language Therapy

In this webinar, Libby Hill - Speech & Language Therapist (SALT) from Smalltalk, looks at the difficulties that PDA individuals may experience with speech and language; even though difficulties in this area may not be obvious at first, and how this can affect behaviour? Libby also discusses the benefits of a full speech and language assessment and how regular therapy from a SALT can help individuals with PDA. An extended question and answer session follows. Recorded in August 2017 Please note: this webinar was recorded in 2017, it may therefore contain some outdated language and terminology.   Watch on YouTube   "If we assume that PDA has a basis in anxiety, one of the key factors behind the anxiety could well be that they do not fully understand the abstract language used around them or 'get' the hidden social messages from adults or peers. Some may even have disordered language. However, they do not want others to be aware they are struggling, they want to control the interaction or situation to keep to familiar, understandable territory. Some may use diversion tactics to avoid or to mask. This is in itself very stressful so increases the anxiety". Libby Hill 2017