PDA Society Resource

Try to search

Try to search

Found 89 listings
Sort by: Newest first
Oldest first From A to Z From Z to A Organisation Name

Helen’s story – PDA in families and deciding to home educate

Helen self-identifies with a PDA profile and sees the same traits in other family members including her daughter and her Mum, with mutual understanding across the generations having led to an instinctively collaborative and compassionate approach to both parenting and education. Passionately believing that our education system is not fit for purpose, despite being a highly qualified education professional, Helen has chosen to home-educate her daughter and describes the process as a ‘dance that goes back and forth and a journey of trust’. This is their story … I discovered PDA at around age 40 and initially dismissed it as yet another attempt to pathologise what I deemed to be pretty ordinary behaviour. I’ve always strongly wanted to avoid every day demands, found other people very confusing, had periods of intense focus, struggled with mood and been really good at playing various roles to get by in the environments I found myself in – I just assumed this was everyone’s experience! At age 41, I came back to it – by now my daughter had reached compulsory school age and, just as planned since she was 18-months old, she is home-educated. The decision to home educate had nothing to do with [...]

What learning about PDA meant to me

To close PDA Action Week 2023 we’re sharing the short but powerful videos Team PDA members sent us about the difference hearing about PDA made to them. Thank you to everyone who shared their experiences for this video, highlighting how important it is for PDA to be recognised and understood and the life-changing impact this can have for PDA people and those who care about them. Please feel free to share what difference hearing about PDA made to you in the comments on YouTube or on our Facebook, Instagram, Twitter and LinkedIn posts.

Letter/email template: Identifying & Assessing PDA Practice Guidance

In 2022 the PDA Society collated the professional practice and experience of a multidisciplinary group of professionals and published ‘Identifying & Assessing a PDA profile – Practice Guidance’ for clinical practitioners and other professionals who are involved in neurodevelopmental assessments. Here’s a letter/email template which can be personalised and used to inform anyone involved in neurodevelopmental assessments about this practice guidance. Who should I send it to? It would be helpful if everyone could send this to their local autism assessment centres, clinical practitioners and autism teams so the guidance is distributed as widely as possible. You could also use the template to inform clinicians about the practice guidance when requesting a referral or support. This flyer can also be attached to your email or printed and enclosed with your letter to draw the recipient’s attention to essential information about the practice guidance at a glance. How do I use the Template? To use the template, please copy and paste the text below into an email or word/google document. The template can then be personalised by editing or replacing the [bold text in square brackets] with your own details and experiences. We’ve included a link to the practice guidance on our website or you can [...]

Email template for informing others about PDA

Here’s an email template which can be used to inform the people and professionals in your life about PDA and the approaches that help. We hope this will help everyone to be better understood and supported. This information sheet can also be downloaded and attached to the email and we’ve included some links to our website where the recipient(s) can find out more about PDA - feel free to add any other links or attachments that would benefit your situation. To use the template, please copy and paste the text below into an email. The template can then be personalised by editing or replacing the [bold text in square brackets] with your own details and experiences. You could send one email to multiple people or adapt and personalise the text for each person you send it to – whatever works best for you. Dear [Name of the person/people you are writing to] I’m writing to share some information with you about PDA (Pathological Demand Avoidance) to help you to understand [me/my child/name of PDA person] and to give us the best chance of building a positive relationship and succeeding together. PDA has a significant daily impact on [my/my child’s/name’s] life. [Tell them a little bit about this [...]

Surviving A-Levels – Jo’s story

Personal Reflection: Surviving A-Levels by Jo. Jo is a PDA young adult. He studied A-Level Philosophy, Maths and English at a mainstream school and shares his personal experience here, offering valuable insights for both young people and adults. Jo reflects on some of the challenges he faced and the approaches he found helpful to overcome these challenges. He also talks about the benefits of self-awareness and how meditating helped him with this. When I was 16, I started at a new school to study for my A-Levels. It was the first time I had attended a regular mainstream school since I quit early in Year 7. My schooling for the 6 years in between had been the complete opposite to a mainstream environment, so there was no reason to believe I would do any better this time than I had previously, except for the fact that I had accepted it would happen and that it was my will. And that tends to be the struggle with PDA I think - starting. It’s probably unhelpful to hear then that in this case it wasn’t a struggle and indeed it doesn’t strike me as an example of my own struggles with PDA, but it [...]

Q&A Live – What is PDA for parents and carers

This Q&A Live recording provides parents and carers with an overview of PDA and helpful approaches. PDA Society training facilitators who are also parents of PDA young people answer common questions around the topics below, sharing a range of perspectives and lived experience: What is PDA? Helpful approaches and changing our mindset Light bulb moments Benefits of diagnosis Masking Sensory overload School avoidance   Published by: PDA Society, August 2022   Watch on YouTube   Further information signposted in the session: Books EHCP guide Home education “hub” Education support & signposting  

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

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 [...]

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.

Jim’s story

Jim is a 33 year old PDAer and has worked at Waitrose for 7 years. He likes to raise awareness of PDA and share his story so that parents know that things can turn out well for their child despite how challenging circumstances may be along the way. Jim also shares details of his time at school, masking, developing the skills to live independently and his love of writing and driving. I’ve been working at Waitrose for seven years. It was my Mum who suggested I apply for the job originally because Waitrose is known for being inclusive and taking care of its staff, and because the store where I work is local to me. I worked my way up, starting with a few hours on a Saturday, then taking on some evening shifts. When a full-time worker left, my manager was delighted for me to take over the role. To feel valued and be called a ‘key player’ at work is really special. People wonder how I cope with being told what to do. I do still have a bit of a feeling inside when I’m told to do things, but I’m very meticulous and pre-prepare things to make sure [...]

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 for teachers, and shares some coping strategies that have helped him along the way. A transcript of the episode is also available here. More about James' experience of PDA is also available on our website, including: PDA & masking with James (video) James' story (case study)     Listen on Anchor   Further information and resources about PDA for education professionals are also available on the 'Working with PDA' pages of our website.

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.  

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  

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.

Winning a Blue Peter competition – Naomi’s story

Hi, I’m Naomi (age 12), I have PDA and I recently won a Blue Peter (BP) competition! The whole filming experience was pretty overwhelming but also gave me some amazing and life-long memories. I think PDAers find it really difficult to experience and try new things as we usually try to avoid change, well I know I do, but I also now know that even if you may initially think you can’t do something, due to anxiety or because you can’t predict what’s going to happen, with the right support and help you can do it! Try to tell a trusted person (mine is my mum) what you’d like to do and, like my family, I’m sure they’ll help you to do it. Yes it’s hard, I had lots of anxiety and worry over things when we were filming but I did it as deep down I really wanted to, I just needed someone to help me without it feeling like a huge overwhelming demand that I’d usually avoid. This is my story … In November 2020, Blue Peter announced their new gaming competition to design a character skin for the game Fall Guys. Three years ago I started to collect BP badges [...]

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

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, [...]

James’ story

James is 14 and kindly shared this extract he wrote about his experience of PDA. His insightful and honest account covers how PDA can be misunderstood; masking; school; the need to have ‘demand free’ time; the importance of trust in relationships; the impact of the Covid pandemic and what helps in terms of managing his demand avoidance. Introduction Hello, I am fourteen years old and at the age of twelve I was diagnosed with Pathological Demand Avoidance (PDA). I always knew there was something about me that was different when I was younger, but my family just saw me as a ‘naughty boy’. Admittedly my behaviour was challenging but it could be made far more manageable if my family and friends understood me. I do not know who you are reading this right now, whether you have PDA, have a friend or family member with PDA or are merely curious about what it is. Nevertheless, I will try my best to give you an insight into the life of somebody with PDA. Also remember everybody is different, so everybody with PDA will have different experiences and ways of coping. PDA and autism PDA is a part of the autistic spectrum, so PDA and [...]

Pets and PDA

For some people, owning a pet greatly improves both their mental and physical wellbeing - research shows interacting with animals reduces blood pressure, lessens anxiety and improves social interactions. Many autistic individuals and their families find pet ownership particularly beneficial. A study by Lincoln University, for instance, found that autistic children experienced fewer meltdowns, and their parents felt less stressed, if a dog was nearby. For others, however, pet ownership comes with too many challenges. As with all things, there’s no ‘one size fits all’ approach. This resource includes the responses to our survey about PDA and animals carried out in February/March 2021 some tips and information relating to pets and PDA a case study sharing the benefits Sarah, an adult PDAer, gains from her assistance dog Millie-Bear. Survey results 94% of respondents own, or have owned, a pet. 50% of these were dogs and cats (in line with UK average pet ownership) with a wide range of other pets and animals: Benefits 92% respondents find pets beneficial in a range of different ways … Sensory benefits Pets of all sizes can (often unknowingly) deliver deep pressure therapy. The body weight of an animal activates the parasympathetic (rest and digest) nervous system and helps to reduce [...]

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.  

PDA Society 5th anniversary survey report

A report on the main findings of our 5th anniversary survey conducted in Oct/Nov 2020, with statistics and comments from respondents, along with a summary of what the PDA Society is planning during 2021 can be viewed/downloaded here. The main findings are summarised below. It was very encouraging to know that our work has had a positive impact in terms of improving understanding of an otherwise perplexing presentation - and that this has been transformational in terms of outcomes our information & resources are highly regarded - and the PDA Society is viewed as trusted and professional the information & support we offer is unique and not found elsewhere There’s a strong call for the PDA Society to raise awareness of PDA with the general public further understanding & acceptance amongst professionals This survey shows that we’ve had a very positive impact in our first 5 years as a registered charity. We’d like to thank the PDA Society team, the vast majority of whom are volunteers, for all their expertise, experience and commitment, and for spending so much time and energy helping others. Looking ahead to the next 5 years, the PDA Society’s primary aims are: to increase acceptance and understanding of the [...]