Pathological Demand Avoidance: World Autism Awareness Day

As it is World Autism Awareness Day, I would like to share some information on a lesser known type of autism, Pathological Demand Avoidance (PDA).

“Pathological demand avoidance (PDA) is increasingly, but not universally, accepted as a behaviour profile that is seen in some individuals on the autism spectrum.

People with a PDA behaviour profile share difficulties with others on the autism spectrum in social communication, social interaction and restricted and repetitive patterns of behaviours, activities or interests. 

However, those who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidant behaviour is rooted in an anxiety-based need to be in control.”

The National Autistic Society 2017 

Children with Pathological Demand Avoidance (PDA) do not often respond to typical parenting techniques or even the usual strategies for autism. These approaches either do not work or make the situation worse. Effective approaches to best support PDA children are quite different and therefore it is important for people to understand this.

Natasha, who writes over at unschoolingaspies.blogspot.co.uk, says that being flexible is key. “The more inflexible the child, the more flexible (and creative!) the adult needs to be.” So true!

Amelia has one word of advice for other PDA parents: “patience“. I couldn’t agree more! Lots of it. 

Further information on useful strategies can be found on The PDA Society website.

In terms of educational approaches, again The PDA Society website has an excellent educational strategies booklet from Positive PDA available for download here. The Autism Education Trust have also created this PDF document ‘Strategies for Teaching Pupils With PDA’ sponsored by Department for Education.

Kayleigh, A parent of a PDA child, also advises that PDA families “find people who are understanding”. I wholeheartedly agree. I feel that awareness, acceptance and understanding are essential. 

On that note, I was thrilled when I found out that Fiona is running the Milton Keynes Marathon to raise awareness – and funds – for PDA. She has already reached her £1000 target for The PDA Society, which is amazing! Of course, further donations are warmly welcomed!!! If you would like to sponsor Fiona, go to her Just Giving Fundraising Page.

Pathological Demand Avoidance, PDA, autism, World Autism Awareness Day, The PDA Society, SEND, ASD, ASC, charity, fundraising, events, marathon
Fiona in training for MK marathon

Further Reading:

Books

Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals by Phil Christie et al

Can I tell you about Pathological Demand Avoidance? by Ruth Fidler and Phil Christie

Pathological Demand Avoidance Syndrome: My Daughter is NOT Naughty by Jane Sherwin

Websites

www.pdasociety.org.uk

www.thepdaresource.com

Blogs

memyselfandpda.com

www.stephstwogirls.co.uk

dinkyandme.wordpress.com

Sally Cat’s PDA Page

*Please note the Amazon books are affiliate links. This means I get a small referral fee on purchases. It does not cost any extra to the buyer. Thank you for supporting me in this way.

PDA Awareness Day

Today is PDA awareness day so I made this brief info video. Apologies if anyone feels that the video moves along abit too fast and is therefore hard to take it in. If so, this is actually a good demonstration of how the world can feel for someone with sensory processing difficulties, which is often one of the many challenges faced by those with PDA (and other types of autism). Pressing the pause button will help with reading and digesting the information if needed, not as simple in real life!

PDA Conference 2015 ‘Together We’re Stronger’

Hubby attended the PDA Society Parent and Carer Conference 2015 in Northampton today. (PDA stands for Pathological Demand Avoidance, which is a subtype of autism). He came back feeling so inspired and enthusiastic that he even agreed to write a blog post about the day (Hubby does NOT blog and does not usually share feelings so openly; today has clearly had a profound effect on him! 😉 )…

image
Hubby busily writing his blog post 🙂

My expectations were blown aside today, my experience was so much more than simply developing my appreciation and understanding of PDA. From the privilege of hearing so many thought provoking messages and hope for the future from Phil Christie, a student and colleague of Elizabeth Newson (I wish he was our Psychologist- he gets my daughter despite having never met any of our family); to the reassurance that- despite all our daily struggles and lack of understanding from so many- WE ARE NOT ALONE; to Neville Starnes and Jane Sherwin’s fantastic presentations. What can I say? Both of them emotionally touched me, their journey’s will stay with me and I know that I wasn’t alone in finding inspiration in their words.

I found the entire day extremely reassuring that there are clinicians as well as parents and carers who truly understand, and can share experiences and guidance. Throughout the day I found myself writing copious amounts of notes… that was until Jane Sherwin’s and Neville Starne’s presentations, when I didn’t lift my pen once. Why was this? It certainly wasn’t because I wouldn’t have wanted to but because both of their stories not only captured my undivided attention but they have given me inspiration that I haven’t felt for years. I wish I had the chance to personally thank them both for sharing their personal roller coaster with all of us. Thank you!

If I had to pick three highlights of the conference it would be a tough choice but I will go with these…

· Jane Sherwin and Neville Starnes talking about their children (although in both cases I had to keep reminding myself that they weren’t actually talking about my daughter!!!)

· Neville Starnes reciting a light hearted blog post on clinical support

· Phil Christie painting a picture of developing understanding in the medical world

Key things from each of the speakers that I will keep with me…

Phil Christie

· (PDA is) “like ASD but…”

· Difficult behaviours and need for control is underpinned by significant social exposure anxiety.

Dr Jo Clarke

· Solve the problem not modify the behaviour.

· Understanding comes before helping.

· Problem solving is collaborative and proactive.

· Kids do well if they can… doing well is preferable.

Jane Sherwin

· Family environment- reduced demands (eg safety only), surround only with those who understand.

· You’re only human and its ok if you don’t cope with every situation perfectly.  

· Take the lead from your child.

Neville Starnes

· Masking is different to coping.

· You as the parent are your child’s expert.

· You can take a PDA child to water but you can’t make him wash!!!!

I met so many wonderful people today and left feeling better equipped to support my family on our onward journey and with a new found appreciation for both the challenges my daughter faces every day but the amazing job my wife does as her full time carer. We are all human, but I honestly think that I found someone pretty superhuman. (Thank you Jane for reminding me!)

The theme of the day was what makes us stronger. During the day we had to write on strips of paper what makes us stronger to make a giant paper chain. I wrote on two, the first “my daughter” and the second “my wife”. But if I could write one more link I would add “days like today”.

Unfortunately I had to leave before the end but would like to thank all the presenters, the lovely people I met and the PDA society for not just a well organised conference, but a life enhancing experience. HUGE thanks to everyone involved.