PDA... or not?
What's it to be?!
I’m feeling guilty now, and I apologise profusely for the email headline. It’s just a trial, to see whether it encourages the other 50% of people who don’t usually open my emails to take a look….
In case ‘PDA or not’ has made anyone panic, I can confirm that I still absolutely believe that PDA is real and that our younger daughter fits the PDA profile. A few years ago I published a post titled Is Pathological Demand Avoidance real? and I think it’s still relevant today.
The email title question is really an insight into my current thoughts about what I personally do, here on Substack and on social media and the internet more generally. I feel like I’ve been in social media burnout for many months. I’ve gradually reduced my usage all round, both reading and writing, and I think that’s a good thing in some ways. But at the same time I haven’t found anything to replace it with.
Or maybe I have to some extent - I would say I’m more ‘thoughtful’ about what I consume in terms of online reading these days, and where I turn to for information, and fun, and who I try to support. What I know is true is that the internet is a very different place now to how it used to be. You can overthink these things though (such as algorithms and popularity and bad comments etc) and that can lead to brain-ache.
Over the last 18 years I have immersed myself completely in the autism and PDA world. Online, mostly, because I spent a lot of time stuck at home with a child who found the world around her a little ‘too much’. In that respect, not a lot has changed - she is still who she is, there is some progress at times but it’s not earth-shattering. She still rarely leaves the house (and never alone, which is probably pretty unusual for a 19-year old).
I’m still reading and learning, and wanting to fight the fight about an education system that has let so many families down; I don’t think that fire in me will ever die. But I’ve been stumbling over what to write and how to write (and I’m not a fan of using AI to help, which is just as well because my girls would disown me if I ever turned to that).
I think people who signed up for my emails might fall into two camps - those who have followed our family’s journey for a long time and who care about what is happening for us, and those who simply want more information and insight about, and help with, PDA. Or maybe there’s a middle ground? I’d love to know. Please take part in the poll at the end of this email and maybe that could help focus my thoughts.
Before I lose those readers who opened the email to hear more about PDA or autism, let me tell you about the upcoming Autism Parenting PDA Summit. It’s a free, one-day online event about PDA on the 29th July that is being hosted by the America-based Autism Parenting Magazine. I was thrilled to be asked to be one of the speakers for this event and there are several others as you can see in the image below. I’d be very grateful if you could show some support and sign up (it’s free!) here:
I’m also feeling honoured to have been asked by Nicola from PDA Space to take part in a live panel discussion for the PDA Space Summit about “What Does Meaningful Support Look Like?” It’s going to take place on Thursday 1st October 2026, from 12.05pm–1.00pm (UK). I’ll send more details nearer the time.
Lately I’ve read some interesting articles about PDA, and parenting neurodivergent children and young adults, so I wanted to take a moment to share some of these.
A while back SENDinMama published “How do I know if my child has PDA?”. Natalie is an AuDHD, PDA adult whose writing is always interesting, factual and helpful, and this is a great starting point for anyone who wants to learn more about Pathological Demand Avoidance.
This one by Ariel G: Easier Isn’t The Same as Better where she asks the questions “Is pathological demand avoidance more like paralysis—an involuntary response of an atypical nervous system? Or is it more like a compulsion—an anxiety loop maintained by the very accommodations meant to relieve it? Or some mixture of the two—an involuntary response that then gets reinforced over time by the relief of avoidance?”
Stepping Back by Joanne Doyle Writes is an article that I think many SEND parents will relate to. She writes about how “parents of neurodivergent children experience constant hypervigilance: Anticipating an endless stream of problems before they happen, solving crises, standing up to bullies and battling oppressive systems on their behalf” and the need to let our children make their own mistakes. I related to a lot of this - but mostly regarding our older daughter.
As I said earlier in this email, our PDAer does not go out alone and is not independent like most 19 year olds. I wish she was, and I spend lots of time trying to gently encourage and find ways for her to access life outside of our home, but it’s simply not as easy as ‘stepping back’. Mainly because she finds the ‘stepping forward’ too big of a challenge.
But this is not me ‘enabling’ her or trying to hold onto the strings - as many will know, our older daughter has well and truly flown the nest, and is now living in a whole different country many miles away, making all her own mistakes but also achieving high (flying, literally and figuratively!). I didn’t decide to parent them both differently, in many ways I’ve tried to parent them the same, but at the same time we have to bend and flex to their individual personalities and ways of learning new skills etc.
Today I saw this video by Kate from Finding Coopers Voice (someone with millions of followers who needs no promoting from me, but I like to share that she is so lovely, and took the time to talk to me in person about PDA and our book a couple of years ago). She is talking about the kind of responses she gets to some of what she shares about her eldest soon Cooper, such as “have you tried telling him no?”
I think Kate’s comments highlight an important point; that there is often a lot of ‘judging’ - of all parents, to be honest, but somehow it feels like it falls on SEND parents more than others. It struck a chord with me, because I know that no-one really knows about the efforts I make to try to scaffold and support and encourage positive change for and from our PDAer where possible. All children are individuals, and react in different ways, and no-one should presume they could ‘do a better job’.
So many more posts and articles that I’d love to share with everyone, all giving me food for thought… but there’s simply not enough hours in the day!
We Need To Talk about Autism & Parent-Carer Blame {Book Review}
Following on neatly from my last comments is my review of this book by Alice Running, We Need To Talk about Autism & Parent-Carer Blame.
Please head over to my blog by tapping the photo or underlined words to see what I thought of this book!
More book reviews coming next time; watch this space (or my social media sites!).
Now I’ve started I reckon I could type for another two hours, but this email is at risk of not being sent because it’s too long for the systems. So next time, depending on the poll answers, I might be back with more news of the recent successes for our PDAer. Would you believe this included a (short) trip into London in the hot weather? Nope, neither would I. But it happened! As did a regular meet-up thanks to an awesome small local charity, and a meeting of a friend (again, almost unbelievable for a girl who would say she has no friends).
Then I could also maybe bore you with some of the fun stuff, like how I met two writers I greatly admire while I was in Florida, and what I’ve been up to over the last couple of months, including while we had our eldest home for a 4 week summer holiday. And that’s a reminder (for me) that life might generally feel overall quieter and slower than it used to be, but it’s still interesting!
Question Time
As I mentioned earlier in this email, I’d love to know what you’re hoping for when you receive my emails?
Thanks for being here and getting to the bottom! If you have any questions, please get in touch by hitting the comment button (I love to hear from you!) or via stephstwogirls@gmail.com or simply reply to this email.
This post has reviews of many PDA books already published: Books About PDA
What drives me slightly insane about the PDA-or-not debate (not in your post, just the online debate in general!) is that it's argued in such black-and-white terms—what Mary Boyle calls brain or blame—where either something concrete is wrong with your brain, or you're 'bad' or ‘lazy’ and everything is just generally your fault. And that blame can fall on the child or the parents. Usually both, in my experience.
I know my PDA traits are real because I actively experience them, and I believe other people who say they experience them, but I don't really know where these traits come from. And I don't know that where *my* PDA traits come from is the exact same place as another PDAer. But ‘I don’t know why this happens,’ is a wildly different statement than ‘nothing’s happening.’
Like, we don’t fully understand what gravity is, but that doesn’t mean we’re all delusional about being stuck to the ground.
Thank you for referencing my article and for the info on the summit.
I totally get that stepping back can be harder with some kids than others.
My younger needs a lot more hands on support so I’m not sure how that will go as she matures.
Sometimes stepping back is just let them create kitchen havoc by making their own lunch 🤷♀️