Good Practice & Insight

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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  

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.

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 download via the button below.   Published by: PDA Society, October 2021   View & download info sheet

Helpful approaches for parents/carers

This 2 page information sheet provides a summary of PDA helpful approaches for parents and carers. Autism and the PDA profile are ‘dimensional’ – meaning they vary a lot from one person to another and at different times or with different people – so parents/carers need a ‘toolkit’ of helpful approaches, tailored to each child, applied flexibly and reviewed regularly. This resource covers: The PANDA Adjusting your mindset Support tips Optimising the environment Being cautious with rewards/praise/sanctions Reducing the perception of demands   Download sheet   For more detailed information please see: Helpful approaches – children.

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 here.  

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 German translation of this resource is also available here.

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 or printed & posted/handed over in person (when Covid restrictions allow!).   Published by: PDA Society, May 2021   Download/print letter

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 Norfolk & Waveney Integrated Care Board 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 [...]

Sources of further understanding

In addition to the information signposted throughout our website, we’d like to draw your attention to these additional sources of information, topics or fields of study which we feel are helpful in furthering understanding about PDA. This is a living list which we'll add to over time - if there's something you've found especially helpful and relevant please do get in touch with us. Neurodiversity The neurodiversity 'movement' views neurological differences (relating to cognition, sociability, learning, attention, mood and so on) as part of natural human variation - as a difference not a deficit - and embraces the social model of disability, whereby it is society's barriers that cause neurodivergent people to be disabled rather than their conditions per se. There are a great many neurodivergent advocates - experts by experience - sharing invaluable information and insights. Some offer training or mentoring, others are engaged in research, writing books/blogs and creating memes. From a PDA specific perspective you may wish to read more from: Kristy Forbes Julia Daunt Sally Cat Dragon Riko Rabbi Shoshana Many academics, authors and speakers' work is also very relevant and informative - here are a few to get started: Peter Vermeulen's work is on understanding autism "in the [...]

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.

Tool to support diagnosis of ASD / PDA / Attachment disorders

Modification of the Coventry Grid Interview to include the Pathological Demand Avoidant profile The Coventry Grid Interview was designed to be used by clinicians as part of a comprehensive assessment process and not as a stand-alone diagnostic tool. There is often diagnostic confusion over the differences between children presenting with autism and those with attachment disorders and some children have both. This paper adds further to the Coventry Grid Interview by including items which might help to identify children with a Pathological (or Extreme) Demand Avoidant profile.   Authors: Judy Eaton, Kathryn Duncan and Ellen Hesketh Published: Good Autism Practice Journal, 2018   View article  

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 [...]

Helpful approaches infographic: PANDA approaches

This infographic illustrates the key approaches which are helpful in working with, understanding and supporting an PDA person. Conventional support strategies, including those often recommended for autism, are often ineffective and counter-productive with a PDA profile of autism. In place of structure, routine, firm boundaries, praise, rewards/consequences, is a person-centred approach based on negotiation, collaboration and flexibility. The PDA Panda symbolises the need to tailor the environment to meet needs and the P-A-N-D-A mnemonic is a simple reminder of helpful approaches.   Published: PDA Society, 2019 and updated, 2021 Download PDF   Further information: Self-help approaches - adultsHelpful approaches - children    

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 [...]

Education Provision and Support – Guidance

Children and Young People with PDA: Guidelines for Educational Provision and Support This guidance was prepared by the PDA Development Group and published in December 2019. It provides and introduction to the topic, describing key principles and how to put the principles into practice. Whilst the PDA Development Group of clinical and professional experts no longer meets, the document is an authoritative and helpful summary for those who are new to the topic.   Download the Guidance    

DHSC statement on PDA

The Department of Health and Social Care (DHSC) does not take a position on matters of clinical debate, but does recognise that there is a valid debate on the PDA profile, and highlights the need for specific support for individuals. Extract from published ministerial statement “…When assessing how best to meet these needs, professionals should do so without needing a diagnostic label. The lack of consensus on the status of the PDA profile should not be a reason to fail to identify and consider how best to meet the support needs of an individual. It is essential that health, education and social care providers work together to recognise that as young people’s needs vary, there must be effective and responsive support for those needs."   Read the full statement   In addition, the Government announcement of the review of their Autism Strategy included the following information: “The review will inform the new joint adults and children autism strategy to be published in autumn 2019. The review looks at... ...improving understanding of autism and all its profiles, including recently identified forms such as pathological demand avoidance (PDA)”   View full text

Evidence for use of PDA terminology

Evidence for Professional Consideration of Demand Avoidance in Autism Assessments The lack of research into PDA explains why it doesn’t feature in diagnostic manuals, although these manuals do permit for clarifying terminology such as “ASD with a demand avoidant profile”. The following evidence has been drawn together to demonstrate that, while different viewpoints exist, clinicians who choose to use terminology to indicate a PDA profile are not doing so in opposition to current medical guidance and thinking. It also illustrates the increasing evidence that the driver for the use of terminology is the impact on improving outcomes. This document gives a broad outline of evidence from a range of sources and is now supplemented by detailed clinician-focussed Practice Guidance: ‘Identifying and assessing a PDA Profile’ published in Jan 2022.   Download document  

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

Workplace adjustments: employers’ guide

Businesses and employers are increasingly recognising the benefits of employing autistic people, but much more still needs to be done. The Chief Executive of the National Autistic Society recently said “most autistic people who want to work aren’t able to work” because conventional roles and workplaces can present many challenges. The PDA Society offers some suggestions about reasonable adjustments to workplaces and work patterns to accommodate a PDA profile of autism in the Adult Life section. There is also a 2-page guide available.   Download the guide

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    

Challenging school exclusions

Children and young people with PDA or other forms of autism, or indeed other special educational needs, can struggle with behaviour which challenges. Our Being Misunderstood survey showed that almost 1 in 10 had experienced permanent exclusion at some stage. This has been possible because schools have said that the ‘tendency to physically abuse’ makes these young people exempt from the equality laws which otherwise would require reasonable adjustments to be made. The National Autistic Society and the Equality and Human Rights Commission supported a test case which was brought by the parents of a 13 year old with a PDA profile of autism. The judge said that ‘Excluding such children often has a massive impact upon them. They may have struggled to find school placements in the first place and if excluded may struggle to find them again.’ “In my judgment the Secretary of State has failed to justify maintaining in force a provision which excludes from the ambit of the protection of the Equality Act children whose behaviour in school is a manifestation of the very condition which calls for special educational provision to be made for them. In that context, to my mind it is repugnant to define as ‘criminal or anti-social’ [...]

School refusal guide

This extensive guide was written by a doctoral student and her co-founder of 'Not Fine in School'. There is a summary guide and a guide for schools also available from their website alongside many other sources of information and support. It describes in detail what parents can do to support children with school anxiety / refusal / phobia, from the first steps of going to a GP, to looking at school policies, requesting school support and looking at educational alternatives.   Authors: Not Fine In School     Download the guide

Good educational practice

Examples of good educational practice for PDA pupils  These extracts showing good practice in education for pupils with a PDA Profile are shared with kind permission from the authors of these two books: Fidler, R. and Christie, P. (2019) Collaborative Approaches to Learning for Pupils with PDA: Strategies for Education Professionals Christie et Al (2012) Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals Collaborative approach: Observe and listen “When Harry first joined the school one of our biggest challenges was his explosive behaviour. Over time we have built good relationships with him and in the main we manage his anxiety well. There are still times when things get difficult, though nowadays he tends to shutdown instead. This is easier to deal with from a safety point of view. But we do not overlook the fact that, for him, the same feelings of being overwhelmed are happening. We try to make sure that staff are aware of the signals he gives out. There seems to be a pattern of escalating signs. It starts with him going a bit quiet and his shoulders sort of sink. Next, he puts his hood up and sometimes closes his eyes. [...]

Bill Nason’s PDA insights

Bill Nason is a mental health professional with a masters degree in clinical psychology and more than 30 years of experience in treating individuals with developmental disabilities. He regularly shares helpful posts relating to PDA on his autism discussion page on Facebook: Anxiety, Opposition and Demand Avoidance The Anxiety of Uncertainty; How do they Cope? Pathological Demand Avoidance, the Confusing Condition PDA, The Fear of Uncertainty It is all about control! Working Through Resistance This is so scary! Imperative versus Declarative Language Anxiety and Weak Sense of Self When You Cannot Trust Yourself, Anxiety is Constant Negative Side Effects of Positive Reinforcement From Trust to Collaboration Negotiate and Collaborate What if my child refuses to collaborate? Are you directing? Distorting reality to protect self-esteem Become a working partner