Links

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 during this first year since discovering PDA, soaking up as much information as I can find to understand this complex spectrum condition as fully as possible and thought I’d link to everything I’ve come across which has helped me do that.

Links are highlighted in this colour.

Societies

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:

Plus:

  • Their two-part webinar in March 2017 ‘Understanding PDA’ is also an excellent introduction to PDA
  • 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 in 2017 lots of great information was shared on Facebook 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

Support Groups

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. There are also various regional groups. There’s a list of groups on The PDA Society website and below are groups I’m most active in:

TV documentaries

The channel 4 series Born Naughty? featured two children 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 channel 4 series Young Autistic & Stagestruck featured Mollie who has PDA. 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 as a whole and I learned a lot from watching it.

Books about PDA

Other books

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.  

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:

Blogs and videos from people with PDA 

In my quest to get a better idea of what the future held for Little Miss M, I searched for information about adults with PDA and found these excellent blogs and videos by people who have PDA which are invaluable to my understanding and where I continue to gain more and more insight and perspective from:

  • 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 video 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 effects Little Miss M. I’ve had many more lightbulb moments from reading their blogs which have led to more positive changes.
  • Sally Cat’s PDA Page (Facebook Page)
    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.
  • Pathologically Free-Spirited (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.

Other blogs, Facebook pages and websites

These blogs, Facebook pages and websites about autism and PDA are incredibly supportive and helpful:

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 Alli at Oh My Musical Goodness. 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 or from the last year of research 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:


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!