Accessing material related to PDA is so important on this journey. Gaining understanding about PDA and recognising how it presents in Little Miss M has been essential in supporting her correctly and put us in a better position to ensure our lifestyle and her environments work to her advantage and to help her develop understanding of herself. Knowing why things are the way they are has also brought us a new level of acceptance and given us peace of mind.
I’ve been like a sponge since discovering PDA, soaking up as much information as I can find to understand this autism spectrum profile as fully as possible and thought I’d link to everything I’ve come across which has helped me do that.
Societies and Websites
My lightbulb moment came from reading The National Autistic Society’s PDA page.
This led to finding The PDA Society’s website where I joined their forum, watched their videos and downloaded the Extreme Demand Avoidance Questionnaire (which I completed for Little Miss M). There’s a wealth of information on their website and it’s really worthwhile taking the time to go through all the menus. Some of the other key pages for me include:
- PDA case studies
- Helpful approaches
- Understanding and supporting meltdowns
- Diagnostic pathways
- Their two-part webinar recorded in March 2017 ‘Understanding PDA’ is also an excellent introduction to PDA. Here’s part one and part two.
- Their Facebook page regularly shares useful resources and news about future webinars and training courses so if you are on Facebook it’s well worth liking or following their page
- Their annual action day is on 15th May and lots of great information has been shared on Facebook and Twitter using the #PDADay.
- Their PDA & Mental Health Webinar with Dr Judy Eaton in July 2017 was excellent and really gave me a better understanding of the mental health issues which can develop alongside PDA and tips and resources on how to manage this. There’s also a great discussion in the Q&A around pathways to assessments and diagnosis of a PDA profile for children and adults
- Their webinar ‘PDA and How Speech & Language Therapy Can Help’ with Libby Hill was really interesting and shed a lot of light on the language and communication difficulties a child with PDA experiences and how this impacts on anxiety and behaviour
- Their Keys to Care for PDA resource – provides an excellent summary of top tips and key points about the PDA profile of autism in an easy to digest format
- Their simple support strategies for PDA video uses the P A N D A mnemonic to helpfully summarise the key PDA support strategies
The PDA Resource is a website which lists many helpful resources and links about PDA and was one of the first dedicated PDA website to be established. A newly launched Strategies section is now live with lots of helpful advice.
PDA Australia & New Zealand is a website which includes some case studies of children with PDA in Australia and New Zealand as well as other helpful resources.
Joining Facebook support groups has been hugely helpful. Connecting with others who are experiencing what we’re experiencing has been a great comfort and learning from each other and the information shared in the groups has led to many positive pathways on our journey. There are a variety of national/global groups with different visions and aims and various regional groups listed on The PDA Society website.
The channel 4 series Born Naughty? featured two children (Honey & Charlie) who were diagnosed with PDA on the show. I watched both episodes and could relate so much to what I was watching plus seeing how PDA actually looked in real life and what the assessment process involved was really helpful when I was first discovered PDA. The episodes aren’t currently available on YouTube but it’s worth keeping an eye out in case they are re-posted.
The channel 4 series Young Autistic & Stagestruck featured a PDAer called Mollie. I really enjoyed watching this series and it was helpful to see another presentation of PDA and also other variations of autism. It really helped me to understand autism better and I learned a lot from watching it. The episodes aren’t currently available on YouTube but it’s worth keeping an eye out in case they are re-posted.
The BBC 2 Victoria Derbyshire show featured 3 PDA families in this film and their struggles to get support for their PDA children. It sensitively covers the difficult topic of ‘violent and challenging behaviour’ (VCB) which can occur in some children with PDA when they reach crisis/overload.
Books about PDA
- Pathological Demand Avoidance Syndrome – My Daughter is Not Naughty by Jane Alison Sherwin is excellent. I remember feeling incredibly moved by her accounts of life, many of which I could really relate to and empowered by the knowledge and insight she shared and felt even more determined to see the world through Little Miss M’s eyes to best help her.
- Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy is a very informative read with lots of advice and guidance.
- Can I tell you about Pathological Demand Avoidance syndrome? by Ruth Fidler and Phil Christie was a great one to read to Little Miss M too.
- PDA by PDAers compiled by Sally Cat is an excellent read and full of invaluable insight from people with PDA. They openly share their experiences and what it’s like to live with PDA.
- Collaborative Approaches to Learning for Pupils with PDA by Ruth Fidler and Phil Christie.
- Me and My PDA: A Guide to Pathological Demand Avoidance for Young People by Glòria Durà-Vilà and Tamar Levi. We have this on one of our book shelves ready for Little Miss M to pick up if/when she’s ready to…
The Explosive Child by Ross W. Greene explores his philosophy that kids do well if they can and that working collaboratively with them to understand the reason for their explosive behaviour is beneficial for all. This approach is ideal for parenting a child with PDA. He also has a website, Facebook page and YouTube channel which are very helpful.
Uniquely Human A Different Way of Seeing Autism by Barry M. Prizant is excellent. In my opinion, every page is brilliant, insightful and helpful. Even if his views aren’t new to you, it’s a great read and reinforces that understanding why a person with Autism does the things they do, and being respectful of their individual way of being/living/coping, is the way forward and essential in helping them and has the best outcomes. One of my favourite extracts from the book is:
“You saved my son’s life,” she told the group. If we had, it wasn’t through heroic measures or brilliant insights. It was because instead of trying to change Jesse, we listened, we observed, we asked why, and we changed our approach based on what we saw and heard. We recognised what was making him feel dysregulated, and we helped give him the tools to cope and to exert some control over his own life. If that approach can work for Jesse, it can help almost any child.
A Practical Guide to Happiness in Children and Teens on the Autism Spectrum: A Positive Psychology Approach by Victoria Honeybourne. This book guides adults through how to promote emotional wellbeing and happiness by using a positive psychology approach. I really love the author’s style of writing and her use of language – it’s clear and so positive and I particularly like the ‘Adult communication’ advice she gives in each section. From first glance I think the suggested activities are great and, as with everything, I’ll need to incorporate PDA-friendly strategies in terms of how I present things to limit demands and to engage Little Miss M in them, but a lot of the activities could easily be incorporated into everyday conversations when the timing is right!
Interviews and webinars with specialist PDA professionals and parents of children with PDA
These interviews and webinars with professionals who have studied and researched PDA and have extensive experience of diagnosing and working with children with a PDA profile and with parents of children with PDA are all very helpful and interesting:
- Pathological demand avoidance: an interview with Ruth Fidler and Phil Christie via Network Autism (video interview). This is a good one to share with schools.
- BBC Radio 4, All in the Mind interviewed Liz O’Nions, a Post-doctoral Researcher and Jane Sherwin, a parent of a child with PDA and author of My Daughter is Not Naughty (first 12 minutes of recording).
- Surrey Hills Radio SEND Show interviewed Judy Eaton, a Consultant Clinical Psychologist and Maria Dane, a parent of a child with PDA.
- Key points around Pathological Demand Avoidance PDA webinar with Laura Kerbey from Positive Autism Support and Training via Can Do Courses YouTube channel.
- Speech and Language Therapist Libby Hill talking about PDA on ‘We are Unique’, a community show about autism on NTV. Part one and Part two.
- Operation Diversity produced three webinars about PDA with Dr Judy Eaton, Consultant Clinical Psychologist which are available on their Youtube channel (Part one. Intro into PDA in children), (Part two. The child with PDA as a learner) & (Part three. Strategies for managing PDA and mental health).
- Stories About Autism chatted with Steph’s Two Girls – a blogger and parent of a child with PDA about PDA in this podcast.
Blogs and videos from PDAers
In my quest to get a better idea of what the future held for Little Miss M, I searched for information about adult PDAers and found these excellent blogs videos and websites which are invaluable to my understanding and where I continue to gain more and more insight and perspective from. I’ve also discovered some amazing children who talk about their PDA too:
- Me, Myself and PDA blog and Julia Daunt (Facebook page)
As well as the blog and Facebook page, Julia’s interview on the Surrey Hills Radio SEND Show and her Live Facebook Q&A videos (May 2017 Q&A) (July 2017 Q&A part one, part two & part three) (May 2018 Q&A) *NEW* (Jan 2019 Q&A) are really insightful. Hearing her talk about needing to prepare for an event and then have recovery time after was incredibly helpful. Little Miss M needs this too and adjusting our lifestyle to incorporate this has been hugely beneficial.
- Riko’s blog: PDA and more and Riko’s PDA page (Facebook page)
Riko’s insight into PDA has been so valuable to my understanding of how it affects Little Miss M. I’ve had many more lightbulb moments from reading Riko’s blogs and memes and from watching their videos which have led to more positive changes.
- Sally Cat’s PDA Page (Facebook Page) and Sally Cat PDA blog
Each one of Sally Cat’s information memes and animations has provided so much insight and made this complex condition easier to digest and understand. She also now has a blog where she brilliantly elaborates on her memes and has created a meme library, sorted by category.
- Harry Thompson (YouTube)
These YouTube videos are so helpful and insightful. In them, Harry explains how it feels to live with PDA, from his school years to work and relationships. They are full of helpful tips and explore different ways to overcome difficulties and embrace PDA.
- Isaac Russell made this video – My Experience of Pathological Demand Avoidance (PDA) in which he brilliantly explains how demand avoidance and anxiety associated with PDA feels.
- Chloe me just me is a PDA child who vlogs on Youtube and Facebook. She has made this video specifically about PDA.
- Little M’s Journey to The Outside World is a Youtube channel by a PDA child where she talks about life with PDA.
- The PDA Hub – a website created for PDAers to share stories and celebrate achievements. Also on Facebook.
- Wild Foxes Tales Facebook page (PDA related posts)
Other blogs, Facebook pages and websites
These blogs, Facebook pages and websites about autism and PDA (in no particular order) are incredibly helpful:
- Steph’s Two Girls blog and Facebook page
- Autism with Lots of Love and Affection blog and Facebook page
- Love PDA blog
- The PDA Soapbox blog
- PDA Guidance blog
- PDA Parenting blog and Facebook page
- It Must Be Mum blog and Facebook page
- The SEND Parent’s Handbook blog and Facebook page
- AutismAwareness.com website and Facebook page
- Dr Judy Eaton’s blog Help for Autism and PDA
- Peace with PDA blog and Facebook page
- The Learning Curve blog and Facebook page
- The PDA Resource website
- Dinky and Me blog and Facebook page
- This Little Boy of Mine blog and Facebook page
- Mummagrizzlybear blog and Facebook page
- Parenting the PDA way blog
- PDA Australia & New Zealand website
- PDA Bubble blog and Facebook page
- Me & My boy, living & learning with PDA blog
- Mumma Birds Boy blog and Facebook page
- Ramblings of an Autism Mum with a Dash of PDA blog and Facebook page
- PDA – ASD Appreciation and Awareness Facebook page
- The Calm at the Heart of a PDA Storm Facebook page
- PDA, Autism, ADHD & us Facebook page
- Life on an Alien Planet blog
- Being Edward blog
- PDAmonium Facebook page
- Connor Pda Facebook page
- SmallTalk Speech & Language Therapy blog by Libby Hill, Speech and language therapist specialising in autism and PDA
- Raelene Dundon blog (Registered Psychologist in Melbourne, Australia)
- PDA Hearts And Stars Facebook page
- Muddling Through PDA blog and Facebook page
- Autism Kids on Tour – Autism Without Limits blog and Facebook page
Understanding anxiety and brain physiology
I’ve found it incredibly helpful to learn about anxiety and brain physiology. It’s helping us understand Little Miss M’s big reactions, big emotions and anxiety better and helping us figure out the best calming strategies for her.
Most of my understanding has come from Allison Davies. She is a neurological music therapist and the videos she has shared on her Facebook page and YouTube channel are excellent at explaining how the brain functions and how emotional dysregulation, anxiety and meltdowns happen. She’s also produced some excellent webinars which can be purchased from her website, called ‘Emotional Regulation and the Brain’ and ‘The Meltdown Series’ and I highly recommend them both.
Child-led parenting and educating
Not strictly PDA but it does tie in with how we best support Little Miss M as parents so thought it was worth including.
We naturally found child-led parenting and education for Little Miss M when she was very small. We recognised that she didn’t respond well to traditional or classic parenting methods and this felt like a much better fit for our family. Our hearts knew it was best (and with the subsequent discovery of her PDA, they certainly weren’t wrong) but it was still daunting in the beginning to go against the grain and parent and educate very differently to the majority of people. I found it hugely beneficial to join Facebook groups with like-minded parents and meet up with those local to us and I started finding articles to read about unschooling and respectful parenting and found blogs to follow and I was soon reassured and my confidence grew. The blogs and Facebook groups which helped the most were:
- Happiness is here blog and Facebook page
- Andrea Sunshine blog
- UK Unschooling Network Facebook group
I’m still learning and discovering new perspectives and sources of understanding so will keep adding to this page as more things come up. And please share with me anything I haven’t mentioned which you think will benefit others on this journey too! You can contact me via my Facebook page.