Autism Acceptance & PDA: When the “right strategies” don’t work | Solo Episode

Laetitia: Welcome to The Neurodivergent Pulse where we explore the often misunderstood world of neurodivergence with experts, parents, teachers, and therapists. Grounded in lived experience, each bite-sized episode gives you something practical to try. I am your host Laetitia Andrac, AI expert, neurodivergent mum and founder of Understanding Zoe. This podcast is recorded on Dharawal country. I acknowledge that sovereignty was never ceded. It always was, and always will be Aboriginal land.

Laetitia: Welcome to The Neurodivergent Pulse. I am Laetitia, and this is a solo episode today. No guests, just me and you. An opportunity for us to talk about Autism Awareness Month, Autism Acceptance Month, and I wanted to take this time today to talk about some things that changed my life, as a parent, and changed how I understood my own daughter, and changed also the way we designed Understanding Zoe, 'cause from the get-go, we designed Understanding Zoe to provide support around PDA. And PDA is known as pathological demand avoidance. We prefer to call it in our house, persistent drive for autonomy.

Laetitia: 'Cause we know that words have power. And I want to start by really being honest with you. When I first heard that term, when Zoe's clinician mentioned it to us, I didn't know what it was, and I started going down a rabbit hole, like I do, as my monotropism, and I started becoming really, really intrigued by it, and doing very deep research on it, because I thought, before learning about this, that I knew everything there is to know to support Zoe better. But actually, when I discovered PDA, I discovered that I was wrong, and that there were many things that could be approached differently, knowing that she was PDA. And then, of course, through my own assessment journey, we discovered that I was also PDA.

Laetitia: But if you are a parent of a child where nothing seems to be working, where every strategies, every support, ideas that you've been given has either failed or made things worse, I think this episode is for you, because I hope that this will help you. And if you're a professional, or teacher, or a therapist, I hope this gives you a window into that life that we live as a family every single day.

Laetitia: So I'm gonna share a personal story here, and it's really about the morning juggle, the morning run, that maybe some of you will connect with. And when we need to leave the house, it's adding lots of demands, right? So I had given, at the time, visual schedule, I had told the plan in advance.

Laetitia: I had set a timer. I had offered choices, like, do you want to wear this dress or this dress? But it was not working, because those elements were demands. Those elements were things that I hadn't read about, and that's where PDA come into place. But I have followed everything that I've been told, before we discovered PDA, and this is when I really started searching about PDA, and discovered why it was not working.

Laetitia: So before we start going deeper, I just wanna explain what PDA is, because there is lots of misunderstanding out there. And no, I am not a researcher on PDA, I am not an expert, in terms of academia and clinician approach in PDA, but I've done all the courses there is out there. I have read so many books. I have explored so many research paper on that topics, and I have lived experience, that's where I'm coming from today. But the misunderstanding and the debate still exists within the clinical community.

Laetitia: So, PDA stands for pathological demand avoidance, as I've said, and it is mostly commonly associated with autism. Yet many clinician just say that it's only for autistic individual. When I think there is an important element to know there, which is, PDA is also increasingly being recognised in other neurodivergent people. So for instance, ADHD. Other neurodivergent profile. So the debate about what exactly and where exactly PDA fit is still open and is still evolving.

Laetitia: I know personally that being autistic, ADHD and PDA, I really relate to that, but I'm also another daughter with ADHD and PDA. So this is the key element, I think, is PDA, where everyone lands and agree on, is it's a nervous system disability. And PDA is really characterised by this anxiety driven need for autonomy.

Laetitia: And I think here the key phrase is anxiety driven. So this is not a child choosing to be difficult, this is a nervous system that perceives everyday demands as deadly threats. And I know that from experience, but also from interviewing and conversing with PDA experts, and there are amazing experts in the US, in Australia. There is really that understanding of nervous system perceiving all of those demands, and the window of tolerance, perceiving this as threats.

Laetitia: So when I say demands, what I mean is all of those things that we ask, and it's not just, do your homework, or clean your room. I mean everything. Would you like a biscuit, or let us go to the park, or what do you want for dinner? All of those elements are demands, and each of them carries this implicit expectation: respond, decide, perform. This is where it's demand. So it's not just put your shoes on, as I said, it can be a question which then really, you need to make a decision, which then comes up with this anxiety driven threat.

Laetitia: And so for PDA children and adults as well, what I've read and what I've learned is, the brain's threat detection system operates at a heightened level, and the research suggests that it is structured similar to a brain that has experienced trauma, even though trauma may not have occurred, or they may have had no trauma that has occurred.

Laetitia: So the alarm system is really always on and always running. And when a demand is coming or landing, there is a survival response. So it's flight, fight, freeze, or fawn, and it's really activated before the conscious thought has a chance to intervene. So it's really this kind of response that is coming before anything can be consciously decided.

Laetitia: And this is why PDA children say, I want to, but I can't. And how many time have I heard my children saying that. And this is not an excuse, that is the most accurate description of what is happening for them in that moment. And there is a beautiful report that was published about PDA, The PDA Experience Report, by PDA North America this year, and they surveyed over 2,000 people, and they confirmed what we already know as families raising PDA and being PDA.

Laetitia: Potentially, 97% of caregivers reported resistance to being told what to do. This is a core trait that came out of the research, and 94% said that punishments and consequences made everything worse. And nearly 88% experienced school avoidance or refusal. So those numbers are not small, but this is again, where I see myself and my own lived experience as a family in those numbers, and I hope that makes you feel less alone.

Laetitia: And this is really what every family is saying, the conventional approach does not work, the conventional approach does not work. So, so why matters for this day, for this week, for this time of the year, where it's Autism Acceptance?

Laetitia: Because I think acceptance means accepting the full breadth of the neurodivergent experience. And PDA being closely associated with autism, many PDA children and adults are autistic, but also, acceptance during Autism Acceptance and Awareness month means recognising everything that goes under the neurodivergent umbrella. And this is where intersectionality and co-occurring conditions need to be recognised.

Laetitia: And that's where, when you accept and recognise the different elements that make our children themselves, or make us who we are, then we understand how it can show up in their life. And it's not just within one label. It's actually this beautiful, like to say, bingo card that is coming with different neurodivergence and intersectionality.

Laetitia: So that's why, for instance, going back to the example early on, of a morning where we had visual schedule, visual schedule were feeling like a demand. And with an autistic child, you're always recommended, oh, you need to use a visual schedule. But actually, visual schedule, we're adding demand, and we're stressing out, and were not helpful for us. Social stories were feeling like instruction, in denial that was not working either. Routine and structure, which many autistic children will find regulating, can feel like a cage, or you know, a limitation and a demand for a PDA child.

Laetitia: So this is where I wanted to talk about PDA during Autism Acceptance Month, and we have a PDA guide that can be downloaded on our website, and really learn from other amazing advocates and experts in the field. As I said, I'm not an expert. We are providing lots of PDA guidance within Understanding Zoe, collaborating with experts in that.

Laetitia: So acceptance means accepting that PDA, even if it is not in the DSM 5 yet, even if it's not a standard diagnosis, and I know that there are some amazing people trying to really make PDA more recognised, it doesn't mean that it's not a real thing, even though some professionals may tell you this is not a real thing.

Laetitia: This is ODD, when actually it is not oppositional defiant disorder, which I hate to say in the full term, but because, I think ODD is not putting the disorder in the term, but it's just framing those approach. So the original researcher who coined PDA, Elizabeth Newson, actually proposed it as a separate condition from autism entirely.

Laetitia: And as I said in the introduction, this conversation is still evolving, and we're not gonna solve it during this podcast, but regardless of where the diagnostic lands, wherever the debate is landing, the nervous system explanation holds, and the approach that helps PDA families consistently is less control, more autonomy, more connection, more play.

Laetitia: This is what's working. And the acceptance means that we see the parents, as I said, I am myself, PDA. And 63% of parents raising neurodivergent children are neurodivergent themselves, so I'm sure there are many of you listening to this podcast who will identify as PDA as well. So you are also navigating your own demand avoidance, which means your cognitive load of adapting your parenting, remembering to use indirect language.

Laetitia: Staying flexible is also a demand on your own nervous system. And I think this is not talked about enough. And that's why, through our research, we also find that 93% of parents raising neurodivergent children feel misunderstood and unseen, because there is no greater understanding of our own neurodivergence, and we need to change that, and we're working on it.

Laetitia: So what actually helps, I'm not gonna, like, give you a full toolkit in this podcast. You can definitely download the guide that we created, and explore different amazing advocates and content creators and experts and researchers in that field. But I want to give you kind of the shift, because the shift is what changes everything.

Laetitia: And the old playbook says, more control equals more compliance, be consistent. How many times have I heard, you need to be more consistent with your child, otherwise it's not gonna work out, follow through. But the reality with PDA is more control equals more crisis, and the equalising behaviour is actually very important.

Laetitia: So what actually works is the opposite. Less control, more connection, more autonomy, more play. Instead of telling your child what to do, you know, you could start wondering out loud, I wonder where your shoes ended up. Or instead of saying, you know, put your shoes on, or instead of saying, time for dinner, you could say, the pasta smells ready.

Laetitia: There is a spot next to me, if you want. Really, that if you want is really important. So it sounds small, but yet it is not, because this single shift will then move from a direct demand to an invitation, to an indirect invitation, and it can reduce that threat signal in your child's nervous system, and in your own nervous system if you're PDA.

Laetitia: So it's, it may not work every time. As we know, there is a window of tolerance, and it depends on the window and the availability and all that. But PDA means some days nothing's work, and it is okay. But play is always a way in, really following the lead, and throwing away the rule book, and connecting before correcting, and really letting them feel in control.

Laetitia: And not like faking it, really giving them this ability to equalise and be in control, because flexibility is actually a strength, and it's not a weakness. Even though in the traditional rule book you need, as a parent, to lead everything, let them be a leader. So I hope this resonates. And if you're sitting there thinking, oh my god, that's my child, or that's my family, I want you to know two things.

Laetitia: First of all, PDA is real, and you're not failing. You are just given the wrong playbook, which is really how I felt, and that's not your fault. And second of all, as I said during this podcast, we put together a free guide that you can download on our website. It's called How to Understand and Support Your PDA Child.

Laetitia: It covers everything that we talk about today, in more depth. Plus, you have some school advocacy scripts that you can copy and paste, some deescalation steps for meltdown and shutdown, and a script explaining PDA to family and professionals who do not get it. And I know that for our own family, it was hard to explain to our parents and everyone surrounding us. So, thank you so much for listening to the podcast today, and feel free to share this with anyone that you think will benefit from it. And in the next episode, I'm going to get a bit more in detail, and I hope you all enjoy this little series that we're doing on PDA. Thank you so much for listening.

Laetitia: Welcome for another Pulse check with Zoe, on The Neurodivergent Pulse podcast. So Zoe, it is Autism Awareness Month. What do you wish to all the autistic people around the world?

Zoe: Everyone is understood and valued, and not left out of any conversations.

Laetitia: How does it feel for you when you're left out?

Zoe: Well, it feels a little sad, and I'm a little bit disappointed in my friends, because they might be talking about me.

Laetitia: Okay, so what we wish for is a world where everyone contributes.

Zoe: Exactly.

Laetitia: Exactly. Thank you everyone for listening to this message from Zoe. That's a wrap for The Neurodivergent Pulse. If this helped, follow the show and leave us a quick review on your favourite platform. You can even share this episode with someone who needs it. You can learn more about our platform at understandingzoe.com. Thanks for listening.