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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.

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.

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 [...]

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

Home education “hub”

Elective home education - helpful approaches & resources for PDA This resource consists of helpful approaches and resources to support parents who are home educating PDA children and young people. For general guidance and legislation about elective home education (EHE) in the UK please visit the relevant government website for your country below … England Wales Scotland Northern Ireland … and organisations such as Educational Freedom, Education Otherwise, Home Education Scotland and Home Education Northern Ireland also offer information, guidance and support to home educating families in the UK (including the deregistration process). Other national and local home education support groups can be found online and on Facebook too and can be invaluable as a support network (groups suggested to us are listed below, under resources). PDA Home Education is a third party run Facebook group specifically for people who are (or are considering) electively home educating a PDA child. It’s a helpful forum for sharing ideas and experiences and for supporting each other. Helpful approaches The suggestions below are not exhaustive; there are no limits on the way learning can be achieved when you electively home educate and home education can look very different from family to family and person to person so [...]

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.

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

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.

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    

PDA Society Support

The PDA Society enquiry line service provides information, signposting and support about PDA for individuals, families and professionals. In addition, our peer-support website discussion forum is moderated and is an alternative place to ask questions, share experiences and find support. The Society also provides training for different audiences, and webinars on a range of topics. PDA Society Enquiry Line Service PDA Society Forum Training PDA Society webinars