Spreading the word about PDA
Experiences of Pathological Demand Avoidance
Last week was the culmination of a very hectic but happy few weeks for me; May and June have always been the busiest months of my year thanks to birthdays for both our girls, and for me too! At the weekend just gone I went from speaking at the Autism Show at the Business Centre in London to seeing Gary Barlow in Blenheim on the Friday, followed by Bludfest in Milton Keynes with our eldest daughter on the Saturday (highly recommend this event, great for all sorts of people but especially those who might not feel like they ‘fit in’ anywhere) and a chilled day out with friends in Greenwich on the Sunday. After all that, I needed a lie down!
This week brought me back down to earth with a bump after our PDAer struggled with her Maths exam on Monday and then had to cope with some other news that meant her last couple of days at her ‘school’ setting (that has helped her progress so much over the last couple of years) could no longer happen this week. For her, this has been devastating, so I’ve also struggled with my emotions this week as I’ve tried to support her through that. I haven’t posted any of last week’s ‘fun’ stuff on social media but I hope writing this little update might kick-start me back into action.
Our PDAer turned 18 last week, a big milestone obviously. I can hardly believe we are now the proud ‘owners’ of two young adults! I haven’t posted much personal information about them since I finished writing our book a couple of years ago (PDA in the Family, in case you’re a new reader here!), mainly because I’ve always said they are now old enough to tell their own stories, if they want to. I spent so many years sharing our family’s experiences that it has felt like a loss in some ways, pulling back from that pattern of life I had established. When writing blog posts over the years I always held onto the knowledge that I was sharing for two main reasons: one, to help others understand our daughter better, and two, to help other families with PDA children to hear about and better understand PDA.
Speaking at the Autism & ADHD Show last week was another step in that ‘journey’ and a huge highlight for me. I am definitely not a natural public speaker; I need notes to both jog my memory about what to say and at the same time to stop me going off track and not saying what I’d like to! Although I have been doing more events speaking about PDA over the past few years, I still feel a little nervous and as if I am an imposter in some way. I think I could have talked about PDA for another couple of hours at least though, 40 minutes was never going to be long enough 😆
Last Friday was the biggest group I’ve spoken to yet - over 200 people were listening on the day - and after I’d finished, I spoke individually to at least 20 people, if not more. Some parents, some professionals, some completely new to PDA, some plainly relieved to finally hear somebody else talking about a life like theirs.
It makes me feel good to know that sharing our experiences has helped others along the way, and although I can’t write about current life in much detail, there is still plenty on my blog that can still help spread awareness and understanding of PDA. So although it almost feels like I’ve taken an indefinite leave of absence from writing on here and my blog, I will be back! Just bear with me as I figure out how to best share information going forward….. the next blog post will be a summary of my talk (Unlocking potential: how to support PDA students in education) at the Autism & ADHD Show, so watch out for that!
Book review
This month I was excited to hear about a new book written by an 18 year old PDAer. The PDA Effect by Ethan Knight is full of insights such as the following:
“PDA affects how I see the world. What I want people to understand is that it isn’t that I avoid things because I don’t want to do them; I don’t think about what I do and don’t want to do when I refuse to do something. The best way I can think of to describe it is that, to me, avoiding demands is just like breathing.
It’s an automatic response that kicks in as a self-protection mechanism; therefore, avoiding decisions feels instinctive rather than being a conscious decision. It’s not about being allowed to be difficult or disrespectful; it’s about how my brain is wired to respond to different situations.”
I highly recommend this book and think it would be great for anyone trying to understand themselves or the PDA profile more generally. The writing is clear and not too wordy, meaning it could be good for younger tweens and teens, and for siblings of PDAers. It would also be great for explaining PDA to extended family and friends, and maybe even busy educators and health professionals could find time to squeeze it into their day. Read my review here: The PDA Effect - insights from an autistic teenager {Book Review}
Coping with heat
We’ve had some unusually warm weather for the UK this past month, and no signs of it disappearing just yet. So I thought I would share this post of mine about how to help children get to sleep in hot weather. It’s something we struggled with a lot a few years ago - it does get easier, I promise! But in the meantime, this post is full of different ideas to try, including my favourite latest purchase, which is a portable rechargeable desktop fan. I’m loving it, it’s perfect for holidays or anywhere in the house!
Question Time
Silly question this week, to see how you all feel about the recent heatwave…
Thanks for reading! If you have any questions, please get in touch via stephstwogirls@gmail.com or reply to this email.
