Wednesday, 2 May 2018

PDA Society Conference, April 2018

Stephs Two Girls May 02, 2018 autism, Pathological Demand Avoidance, PDA, PDA conference, PDA Life, PDA Society

It's been a crazy busy couple of weeks for me... but then again I do seem to say that a lot of the time. I'm not sure anyone believes my life is anything other than busy, ever?!

On Wednesdays I typically publish a new post in my 'Our PDA Story' series but replacing that this week is a post about my experience attending the recent conference all about Pathological Demand Avoidance.

The conference was organised by the PDA Society and as I've been involved with them for some time now, offering parent training on PDA to parents and carers in our area, I volunteered to help out on the day. There were around 30 others helping with the event; we all wore purple PDA polo shirts so we were highly visible.

Purple PDA bloggers - me with Danielle from PDA Parenting

We were ready and waiting to help the conference attendees - over 250 delegates arrived at the event, which was held in central Birmingham. A large majority of those attending were parents or carers, but it was encouraging to see a good proportion of people involved in education or specialist services turning up to learn more about PDA too.

On the day I helped to man (or should that be wo-man?!) the PDA Society info stall and also took on the role of tweeting on behalf of the PDA Society from speaker sessions and workshops at the event. There's a summary of all these tweets here; hopefully this gives a flavour of what was happening. Many thanks to those who joined in with the tweeting - it was one important way of involving others who couldn't make it on the day.

First up to speak at the conference was Phil Christie, who worked closely with Elizabeth Newson for many years. Elizabeth was an international expert in Autism who was the first to identify Pathological Demand Avoidance as a condition after much work with families. Phil is a Consultant Child Psychologist who carries out assessments and has much experience in diagnosing PDA, whilst continuing to work closely with families and writing the all important 'bible' on PDA mentioned in a previous post of mine (Understanding Pathological Demand Avoidance Syndrome in Children).

In his presentation, he pointed out that he has identified children with PDA who 'looked like ASD on paper, but there is a quality of relating which reflects a level of social understanding not usually seen in the standard ASD presentation - if any of them can be said to be standard!' He also introduced some words from Francesca Happe who is involved in current PDA research, and part of that was the phrase 'If the usual ASC-friendly settings and approaches don't work, it's vital to find out what will.'

Next keynote speaker was Ruth Fidler, who is an Education Consultant with over 20 years experience of teaching and leading in a specialist provision which catered for children with PDA. My favourite quote from Ruth was as tweeted below:

Tweet from PDA Society feed; succesful educational placement is one that matches provision to individual needs

Following on from these two experts were another two experts - parents to children with PDA, Natalie Menagh and Lisa Atkin. They led us through their experiences of living with PDA in the family, and shared strategies which had and hadn't worked for them. All this great advice can be found over on the PDA Society website in a detailed summary of their talks written up by another PDA blogger, Notes on PDA.

In the afternoon, Dr Judy Eaton, Consultant Clinical Psychologist, talked about adults with PDA (yes, they do exist!) and mental health. She discussed eating disorders and personality disorders. It was all very interesting but one particular point jumped out at me - the recognition that those with ASD often do not seem to recognise hunger in the same way as their neurotypical peers. This seems to be something that Sasha feels; she will say she's hungry all day long at times and it can be quite stressful trying to avoid her snacking on the one food that she loves (Peperami sausages... we definitely get through more of those than an average household would!).

Full notes on all of these presentations can be found over on the PDA Society website.

Then came a choice of five different workshop sessions for the conference attendees. The choice was between Special Educational Needs Law (EHC Plans) by SOS!SEN, Social Communication & Interaction by Small Talk SALT, Sensory Integration by Children's Choice Therapy Services, Impact on Family Members by Side By Side Coaching or a Q&A with Adults with PDA (led by Sally Cat and Sally & Isaac Russell). All sessions were extremely popular and some attendees told me they wished they could have heard them all!

The PDA Society is a small team of volunteers who have all had experience of living with a child with Pathological Demand Avoidance. They were a lifeline to me in the early days when we first started to realise that Sasha's characteristics didn't quite fit into the classifications of autism which were better known at that time. I was delighted to be able to help out at this conference and extra pleased that they received such good feedback afterwards.

The very first time I went to a conference about PDA was one organised by the National Autistic Society, back in 2013, and that one was followed in 2015 by the first ever conference held by the PDA Society, more specifically for parents and carers. I still remember how I felt at that first conference; I was moved to tears as both professionals and parents described children who were very like my own. Up until that point I had felt very isolated as we just hadn't met another child like Sasha, but all of a sudden it became clear that there were others, and that many more people understood the PDA strategies which needed to be used to enable life to carry on calmly. In those rooms, I wasn't being judged at all.

I'm sure that this year, lots more parents who are just starting out on their PDA 'journey' felt similarly relieved to finally understand, and be understood. Huge congratulations and thanks to the PDA Society for making such a big difference to so many families.

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.