Tuesday, 20 November 2018

Autism in the Celebrity Jungle

Stephs Two Girls November 20, 2018 Anne Hegerty, autism, conference 2018, I'm a Celebrity, National Autistic Society, news, Pathological Demand Avoidance, PDA

Today I watched the ITV news at lunchtime and loved the fact that there was much talk about Anne Hegerty, the Governess from the TV show The Chase. She is a current contestant on ITV's I'M A CELEBRITY... GET ME OUT OF HERE!

It's always brilliant when autism is discussed on mainstream media as there's always hope that it will lead to wider understanding. I heard that the National Autistic Society's website crashed due to increased traffic. It's great that so many people wanted to find out more. Anne seems to have pushed herself extremely far out of her comfort zone but I really hope she can stay in the show as long as possible.
I love that her camp mates have rallied round her already. She is of course only one face of autism, but she seems lovely and has already done much to increase understanding just by being in the jungle.

The other big news of the day is that the National Autistic Society held a conference about Pathological Demand Avoidance. I wish I could have been there, especially as it was being held in one of my favourite places, Manchester. It's been some years since I had my light bulb moment and I've been feeling slightly emotional as I've watched the tweets about the day come through from the PDA Society.

It has reminded of the time I first went to a conference about PDA - that was also one organised by the NAS, although I have of course been to a couple of brilliant ones organised by the PDA Society since then. It was five years ago in 2013 and Sasha was just 6. We'd already had our lightbulb moment by stumbling across PDA on the internet and we were fairly sure that's what Sasha's diagnosis should be. I wrote a post about the 2013 conference just before going but remember being too busy digesting all the new information to have time to write a post afterwards!

Going along to the conference was like a huge affirmation of everything we believed and how we felt Sasha presented, which was differently to those I'd met with Asperger's or with classic autism. I sat with tears in my eyes as I nodded in agreement with everything and realised that there were others who were experiencing the same challenges we were. I remember in particular a video which was played, showing a young boy in an assessment, using all the techniques to avoid demands which Sasha did back then. His arms hurt, his legs were too tired, he was a car, he couldn't hear... lots of strategies to avoid the questions.

That conference was the first time I met Julia, an adult diagnosed with PDA who also blogs at Me, Myself and PDA. I'd been chatting online with her for several months; she gave me hope for Sasha's future, and great insight into how she felt and how I could best support Sasha.

I also remember feeling elated that there were hundreds of people in the room, a mix of parents and professionals, and happy in the knowledge that the more people who were there to listen and understand about PDA, the more who could go back and spread the word to friends and colleagues. Of course, that still needs to happen today - sometimes it feels as if the ripple effect is just too slow. Having run a page on Facebook for my blog for a while, I'm always conscious that not even all the people who want to see my posts (never mind those who haven't yet heard about PDA) get chance to do so because of the weird algorithms which Facebook uses. So I keep on keeping on, sharing what I can, spreading the news about PDA. Everyone who reads and comments and shares, you are all helping massively too. Thank you.

Now seems like a good time to share a new resource with you - the PDA Society have created a one page document called 'Keys To Care for PDA'. It was written with specialist settings in mind, but is definitely relevant for others. Please do feel free to print and share as much as possible.

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.