This section contains details of or links to my personal favourite list of helpful blogs, websites, books and videos, aswell as a couple of key articles on aspects of PDA that I’ve found particularly useful, and also sources of legal help if you need it. Its not exhaustive – just my own selection of favourites that I think are worth sharing. The opinions expressed about them here are entirely my own.
Some of these are great for parents and some are great for flagging to health professionals and teachers / SENCOs or wider family members.
TV / Videos / YouTube
Channel 4’s groundbreaking documentary: “Born Naughty”. Sources seem to vary as to which episodes, but I believe its Episode 1 and Episode 3 that feature PDA. Although a while ago now (2015), I include this series because its still worth watching. It was the way in which many people first heard about PDA, and provided a great insight into how PDA children can behave based on real life video footage examples. Each episode features two children who a team of health professional analyse, to see if its a parenting issue or if a medical diagnosis is required. In episode 1 we see 10 year old girl Honey and in episode 3, 9 year old boy Charlie – who both receive a diagnosis of Autism with a Pathological Demand Avoidant profile (i.e. PDA). Worth watching if haven’t seen them yet. The program also features among its specialists, Speech and Language Therapist Libby Hill, who is now very active in the PDA world, including doing private PDA assessments and speaking at national conferences.
“My experience of PDA” A 10 minute interview with Isaac Russell, a very articulate young adult who has PDA. Filmed when he was 18 years old, Isaac answers some excellent questions which I found incredibly insightful in helping my understanding of what PDA is like from the perspective of someone who has been diagnosed with it.
Pathological Demand Avoidance Strategies for Teachers – a 20 min You Tube video by a specialist autism teacher, Victoria Hatton, who is also a mum of an autistic girl, author of the book ‘Talking Autism’, blogger at Starlight and Stories, and founder of Autism Consultancy International.
There are others who are very helpful in explaining PDA from their own experiences, (e.g. Blue Millicent, Harry Thompson) who you can google / find on YouTube . Harry Thompson (whose excellent book you can also read about under ‘books’ below) is another young adult with PDA who speaks eloquently and fascinatingly on many interesting aspects of PDA (including aspects of the psychology of PDA which I particularly enjoy). He has his own YouTube Channel, sometimes speaks at PDA conferences and also runs his own consultancy business helping families and individuals with their PDA challenges. See his website www.harryjackthompson.com for details.
Websites & Blogs
I find the PDA Guidance site by Jane Sherwin continues to be extremely helpful and I have visited and revisited it so many times. It’s incredibly well written and laid out in a very user-friendly way, being informative and packed full of excellent practical advice for parents, all born out of Jane’s own difficult journey and experiences with parenting her wonderful PDA daughter Mollie (now in her teens). Jane includes much helpful advice, including on relevant aspects of the law, e.g around educational entitlement and school refusal. Jane now works closely with the PDA society, PDA Action and is also the author of the excellent book “My Daughter is Not Naughty” which you can read about under ‘books’ below.
The PDA Society – So much helpful content on here, too much for me to go through but I’d recommend you browse the site and explore what’s on there, its brilliant. Probably the best place to start if you’re new to PDA and far more links to other great resources than I have listed here. A must!
The PDA Resource Lots of helpful info – in particular I liked many of the documents available under ‘PDFs / books’ – some that are great for flagging to health and education professionals and are clearly labelled as such.
Here is another good overview of PDA from the well-recognised and highly reputable National Autistic Society. The NAS have also produced some very good videos about PDA which I’ve included in the ‘Videos’ section above.
Special Needs Jungle – I find these blog posts so interesting and insightful for keeping up to date with many about many topical issues in the SEN world, including important legal and political info. PDA crops up as a featured topic from time to time, such as in this helpful post by another parent about ‘The frustration and heartbreak of PDA”.
Blog by adult PDA’er Julia Daunt. Julia also speaks at various PDA conferences and events and is another great ambassador for PDA and helping us all understand.
Finally, Consultant Clinical Psychologist Dr Judy Eaton (now very prominent in the world of PDA) blogs helpfully on various aspect of PDA here. Judy has also diagnosed many cases of PDA and information about her private autism / PDA assessments is at https://help4psychology.co.uk/index.html
Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals, by Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy. A great book, the ‘PDA bible’. Very readable and helpful with strategies for home and school and anyone involved professionally with PDA, written by some of the current leading authorities on PDA.
Pathological Demand Avoidance: My Daughter is Not Naughty, by Jane Sherwin. I could relate to so much of this easy-to-read book and I loved what a comprehensive, honest insight Jane gives into all aspects of how PDA impacted her daughter and her own and wider family life, including their mental health. It also gave me a lot of hope for the future learning about the ways Jane and her family had adapted. Jane is also author of the excellent website https://pdaguidance.wordpress.com and some of the articles on some of the specific ‘hot topic’ issues that I have listed below under ‘Specific Topics’.
Can I tell you about Pathological Demand Avoidance? by Ruth Fidler and Phil Christie. A short, easy-to-read book to share with family members, siblings and depending on age, the PDA child themself. My 8 year old was really grateful to hear the account of the fictitious ‘Issy’ and be able to relate to her feelings in particular – it has been a useful way of opening the door for all sorts of important conversations to get him to understand himself and PDA better. The second half of the book goes through strategies that can help a person with PDA.
The Explosive Child: A new approach for understanding and parenting easily frustrated, chronically inflexible children by Ross W Greene. I have to come clean and say we haven’t (yet) implemented the approach recommended in this book as it looks like a bit of a commitment, but I know other PDA parents who have and who say its really effective. The author also does another book called ‘Lost in School’ which is apparently also very good.
Talking Autism – Parenting Your Unique Child – published in Summer 2018 this is a highly practical very easy to read book by Victoria Hatton, an experienced specialist autism teacher who also has a daughter on the spectrum. She has much experience of successfully teaching PDA children, trillions of strategies for the home and for school and the book is bursting with great honesty, advice and encouragement. Victoria also blogs (including on PDA) at Starlight & Stories, runs Autism Consultancy International, and also is very active in her excellent Facebook group #UNIQUEANDSUCCESSFUL: The Community and #UNIQUEANDSUCCESSFUL: The Membership, where you’ll find a LOT of great support (though the Membership one you have to pay for, but having been a member for a while I can testify that its extremely good.)
The PDA Paradox: The Highs and Lows of my life on a little-known part of the Autism Spectrum by Harry Thompson. What can I say? I REALLY loved this book! Harry had me laughing out loud several times as I related to his experiences, his quirky viewpoints, his hilarious turn of phrase, warmth, frank honesty and no-holds-barred approach, all the while helping me learn so much of value to aid me with my own PDA parenting journey and in understanding my own wonderful PDA son. I’ve no doubt Harry has had to work incredibly hard over the years in becoming who he now is, but his determination, resolve, self awareness and insight are second to none, and for me its so encouraging and wonderful to see adult PDA’ers like Harry so confident and proud of their PDA identities, helping the rest of us to understand it all so much better and giving us all real hope for the future. I highly recommend this book – and also his YouTube Channel (see review above under TV/Video/YouTube).
The Life You Never Expected: Thriving While Parenting Special Needs Children – for those of you who might be Christians or wonder where God or Jesus might be in the midst of all you are facing, I can highly recommend this book. Written by husband and wife team Andrew and Rachel Wilson, parents to two autistic children, although not PDA specific it raises so many things that are relevant to anyone who is raising a child with additional needs, as you go through the many low points that this parenting journey can bring. I found it to be a source of great wisdom, depth and comfort and it taught me so much.
Collaborative Approaches to Learning for Pupils with PDA – by Ruth Fidler and Phil Christie, leading practitioners in the field of PDA education. Published in late 2018, I can’t speak highly enough of this book. What this provides is essentially a ‘how to’ manual for teachers and school leaders on what adaptations are necessary for PDA children and how to do this – whether in a mainstream or specialist setting. It thoroughly covers a wide range of strategies, is well written and easy to read, with lots of clearly explained examples on how to adjust wording, tasks and other aspects of the school day to reduce anxieties and make schooling possible (and even successful!) for PDA children and young people. E.g. as well as ways to help pupils engage with learning, there is also a huge emphasis on the style of approach and the potential need for flexibility around policies on uniform, homework, school hours and what activities they do don’t take part in (eg assembly, play times, school performances etc). I highly recommend!
I’m aware there are also some NEW books on PDA very recently or soon out, that I’ve not read yet, but expect these are also going to be worth a read. They include:
PDA by PDA’ers by Sally Cat (who also has a blog / FB page)
Me and My PDA by Gloria Dura-Vila – I’ve bought this and it looks excellent, but so far have not succeeded in getting my son to engage with it, so will report back when I do!
Special Needs Law – if you need help over a particular issue you can contact IPSEA by booking a call-back via their website, or SOS!SEN who are also able to advise on matters of law, both are charities who provide this service free of charge. I highly recommend both. Also the excellent charity Cerebra publish a booklet designed to help parents who need legal help, including help finding a lawyer.
Cerebra also do another GREAT booklet that’s free to download to help parents access what they are legally entitled to when battling the powers that be (eg a Local Authority or the NHS), see Cerebra’s Toolkit for Accessing Public Services here.
There is also a wealth of accurate and reliable legal advice in this great book written by top barristers and lawyers: Disabled Children: A Legal Handbook – its free to download chapter by chapter from the Council for Disabled Children’s Website, its easy to read and very parent/carer friendly, I highly recommend it. Chapter 8 is particularly enlightening as it tells all about how parent carers are entitled to support.
There is also your local IASS or SENDIASS (Information Advice and Support Service) which is a free impartial service available to SEND families. Every local authority has to have one and we have a great one here in West Berks. They can help with advising on your legal rights, help with EHCPs and even attend meetings with you.
Is it PDA or is it ASD + Demand Avoidance? – a lot of people grapple with what makes PDA so different to the general ‘demand avoidance’ that can be seen with more ‘classic’ autism. There have been a few pieces written on this subject but this one (and the one below) are the best I’ve read and helpful for parents who may be considering if their child might have more classic ASD or the PDA profile of ASD.
What is demand avoidance and when is it pathological? This is a great article from the perspective of an adult PDA’er, on the difference between ‘normal’ or lesser forms of demand avoidance and the EXTREME demand avoidance that we experience in PDA. See Emily Wilding’s blog here.
Differences between PDA and ODD – many people struggle with what the difference is between PDA and Oppositional Defiance Disorder (ODD). The explanation I have found most helpful is this one.
Violent and challenging behaviour – if you are experiencing this with your child, you may find this site to be of help by the amazing Yvonne Newbold. She also has a Facebook Group called ‘The SEND VCB Project’ where you can be among parents in a similar situation.
School refusal https://pdaguidance.wordpress.com/2016/01/27/school-refusal/ – some great information and practical advice here
School refusal / school difficulties : http://www.notfineinschool.org.uk/ another helpful site with a key message being DON’T force them in….. NotFineInSchool (NFIS) also have a very supportive Facebook group that I’d highly recommend, there is a wealth of experience out there from other parents who’ve trodden the same path.
Help with school – you can also contact your local SENDIAS or IASS (available nationally – google it to find your nearest one if you’re not West Berks, every Local Authority has to have one to give impartial advice to SEND families). They are able to advise on lots of different matters including education, and may be able to attend meetings at school with you, if you need additional support or feel you aren’t being treated fairly. They can also help with EHCPs (Education, Health and Care Plans).
Struggling siblings (and all family members) – often our other children also really suffer as a result of a sibling’s PDA and we are often wracked with guilt over it and how we look after their needs too. Although there is no easy solution, we can do our best to make sure all our children are feeling loved and valued as much as we can, which can be a great source of comfort and security to siblings, and the book ‘The 5 Love Languages of Children’ by Gary Chapman and Ross Campbell is really helpful in helping us to do that. It explains that there are different ways we each express and receive love, from speaking positive words to spending quality time together to physical hugs or gestures of giving/doing stuff to help. The idea is if we can identify our child’s main ‘love language’ then we can aim to make sure we are communicating ‘love’ in the way or ‘language’ that they best understand. I couldn’t believe how effective this was and the positive change in both my PDA child and his brother (and in my relationship with each them) when I started to actively use the different languages that worked for them both, and stop wasting so much time on the ones that didn’t. For example one loves hugs but the other doesn’t and I learnt I needed to constantly speak ‘words of affirmation’ to him instead of offering hugs for him to feel really secure’ loved and cared about. There are books in the series for adults as well as children. Highly recommend!