Understanding PDA through the nervous system with Sarah Middleton

Laetitia: Welcome to 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.

Laetitia: This podcast is recorded on Dharawal country. I acknowledge that sovereignty was never ceded. It always was and always will be Aboriginal land.

Laetitia: Hello, Sarah. Thank you so much for joining the Neurodivergent Pulse podcast.

Sarah: Hello. Thank you for having me. I'm very excited to be here.

Laetitia: And we're gonna talk about one of the numerous topics that you love talking about, which is PDA. Yes. So before we start this conversation on PDA, I would love for you to share a bit more about how did you enter that space, what's your journey coming into working in the space, what's your experience, whatever you feel called to share with us.

Sarah: Yeah, such a good question, and it's, you know, the question is, how far back do I go? Because I think if we go right back to when I was eight...

Laetitia: Yes, I would go there.

Sarah: We'll go right back to when I was eight, and I decided I wanted to be a primary school teacher, and I remember telling my grade four teacher, "I'm gonna be a primary school teacher." I think it was a lot about the ways in which, as a teacher, you have the opportunity...

Sarah: Well, this was my perception as an eight year old. You have the opportunity to support children to feel really seen and understood, and I had a teacher at that time who was great at seeing my strengths, and she allowed me space to go and pursue interests outside of the regular curriculum. So it started at eight, and then I focused on getting to university to study teaching, and that was great.

Sarah: I loved being in that teaching course until I went into schools. So once we got to placement, all of a sudden I became really overwhelmed about the reality of being a teacher and the experience of trying to take care of and hold in mind 25 plus people, young people, all at the same time, was so intense.

Sarah: And I remember just thinking, "How am I gonna do this?" And I really want to just go and sit with, like, one student who's really struggling and support them. I was called to, like, those kids who couldn't get started on their maths, and I remember this one boy saying, "I'm dumb." And that was, like, the barrier.

Sarah: We couldn't even get to the maths because he was saying, "I'm dumb." And I thought, "Okay, what job can I get that I can just sit here with him and not be responsible for all of these kids, but help just some?" And so enter social work where I was like, "Okay, you can work with individuals in small groups. You can work in school settings.

Sarah: You can work in private practice," and that would be cool. So yeah, at age 22, I graduated as a social worker and here we are now a couple of decades later and if we kind of touch on where I was at maybe, oh, six years ago, that was the beginning of the journey for our family of recognising and understanding neurodivergence.

Sarah: So not really that long ago. Maybe seven or eight years ago the first time the paediatrician said, "So just flagging that..." And I knew what she was talking about. She said it in this kind of roundabout way, and I'm like, "I know what you're talking about because I've worked in schools and I've worked with autistic kids, and I know where you're headed with this."

Sarah: So fast forward to just a few years ago, and I was teaching at Vic Uni. So I was teaching adults, and had no plans of getting back into direct social work practice. And I found myself basically my full time job was understanding autism and ADHD, because as a parent and as a person who was late identified and going, "Uh huh, uh huh, huh, this is me as well as my kids," I was deep diving.

Sarah: And then we were navigating NDIS, and then we were talking about it with school, and I realised this is really hard. Really, really hard to do. And I think, after a while of kind of working lots of stuff out, and the hours it took to process and understand, as someone who'd worked in schools, as someone who'd studied teaching, as someone who's a social worker and can navigate systems, I thought, "If this is so hard for me, imagine how hard it is if you don't have any of this background."

Sarah: And so I ended up creating Brilliant Little Gems to support parents who were on this journey as well. And then basically what's happened in the last few years is 95% of the people who came to me for support ended up having children with a PDA profile.

Sarah: Yeah. So that's how we've landed here, and when, really, I then, my next part of the journey was to immerse myself in understanding PDA, and recognising the PDA that lives inside of, you know, my home as well.

Laetitia: I love it. So for anyone who is listening to this, we've done a few episode on PDA, but I love always asking our guests when they speak about PDA, because it's a topic that is still early on in its journey of research, and we all have a different lived experience and a different way to interpret it. So I would love for you to share a bit more about PDA, pathological demand avoidance, or we like to call it persistent drive for autonomy or pervasive drive for autonomy. However you wanna call it. I don't wanna trigger any PDAer. So can you explain what often gets missed in PDA?

Sarah: Yeah. PDA, I think, and thinking about where I've come from, having also studied psychology at uni, and the ways in which we were understanding behaviour as I was studying teaching, and as I was working as a social worker as well.

Sarah: I think about that, and I think about PDA, and it really turns everything that we were taught, that I was taught, on its head.

Sarah: Yeah. So all the kind of classic information, and really a focus on, okay, so this is what we can see externally with the child. This is, like, the behaviours we can see, whether it be they're withdrawn, or, I don't know, they're distracted or distracting.

Sarah: Whatever it might be. I feel like when we're focusing on the behaviours and then assuming what that means. Okay, well, if it's this, if it looks like this, it means this, based on our, I guess, really the paradigm we've been offered, in allied health and in education, which is founded in a behaviourist approach, essentially.

Sarah: It's almost like a really clear A plus B, you know, like A, B, C. It's that kind of thing. And so I think what we're missing a lot, and we now understand more about, is the nervous system perspective and how much more complex that is.

Sarah: I mean, PDA, I think it's a really actually difficult experience to grasp if you haven't lived with it. I've certainly learned so much by being immersed in the experience, because I've had the opportunity to read things, to learn as a professional, and then test them out and process them myself. And so if I think about maybe part of what's missing is if we can understand that it's a very unique individual experience, and that the most important thing is unconditional positive regard for the child, and we can connect from a place of curiosity and compassion.

Sarah: Yes, we can understand all the different other theories that apply, but if we can attune to the child in front of us and see them as a unique individual who's got a lot of activation often in their nervous system, a lot of stress, and learn from them, I think that's probably the thing that we're currently really needing the most.

Laetitia: Thank you. Thank you, Sarah, for sharing that, which is, you know, a beautiful segue to the next conversation, which is when we see a PDA or child or an adult resisting, the default frame is, oh, they're just defiant or, you know, the behaviourist approach that you mentioned, and that costs a lot to the child or to the individual. But what opens up when we frame it exactly as you described through the nervous systems, through compassion, through curiosity? What have you seen being the shift from one approach to the other approach, which we hope the community will embrace more and more, curiosity and compassion and individuality in a way?

Sarah: Yeah, and I think that's such a key thing because one of the easiest ways to trigger PDA stress responses is pressure and expectation, and making assumptions. And so I think when we go the other way, which is to make space, to offer choice, to genuinely try and understand their internal experience, and that's not necessarily through them being able to communicate, "Oh, this is what happens."

Sarah: It's about working together, maybe bringing some of our nervous system understanding. And I really like to bring in the PDA pyramid, the UK Society's PDA pyramid, which is a really helpful visual for being able to, for us to get a clue as to what might be going on because it shows us the different kinds of things you'll see depending on the level of activation in the nervous system.

Sarah: So it gives us a framework to then support our curiosity, and the opportunity for us to be in communication, in relationship with the child, to work things out together. Because I think it's also a lot of pressure to just say, "Well, hey, what happened there?" Or anything like that. That's, you know, a direct question, probably not that helpful.

Sarah: But shifting the approach to "I wonder", and joining them in almost being, like, a little bit of a detective, a nervous system detective, changes things. And I think of an example of a young person recently who's just started secondary school, PDA profile, and they were feeling, they were actually looking like they were entering into a burnout, really fatigued, overwhelmed, struggling to get to school.

Sarah: And the way that we worked with this is a conversation with the school and someone who they have a key relationship with. And being able to talk about, at the moment, this is what we're seeing. There seems to be pressure. There's increasing stress. The more that the child is feeling tired, the less able they are to actually meet the demands of the school day.

Sarah: And so the school and the parents did this beautiful work with kind of looking at, well, what's possible here in terms of creating some space? Where can we allow for downtime? Where can we allow more choice? And it was fascinating because what we saw in a matter of weeks was this shift from, like, as I say, early signs of burnout to the child having so much more choice and autonomy.

Sarah: They got to choose about when they wanted to be at school. They even got to choose, because they're in year seven, they got to choose whether they wanted to sit the end of semester tests. And so they got to choose what was important to them. And what's really fascinating about this is that when we create this space, this young person could choose that they wanted to sit all of their tests.

Sarah: That was important to them.

Sarah: A week earlier, before we created the space and had these conversations, and gave the choice, and looked at where the pockets of rest could be, and looked at dropping a subject that was going to cause them stress because it's not their thing, but also dropping a subject so they can spend some time focused on their special interest.

Sarah: They... And so, really regenerating time for them while others are off doing the class that they don't particularly need to do or want to do. When we did all of that, it was like a weight lifted off the young person with PDA profile. All of a sudden they're back in the driver's seat making their decisions about what they want.

Sarah: And I think, you know, like, that's just a beautiful reflection of how simple it can be when you work together, like, with the child and around the child, and understand that it's not that they don't want to. Often it's not that they don't want to, it's that they can't.

Laetitia: Yeah. So well said. I love this example, and I think it's really where we need to, as you said, being curious and compassion, but also being open to another way. And I know that this morning when one of my kiddo woke up, Pierre, being like, "Don't wanna go to school today. I'm not feeling like it." Like, "Okay, sure. Whatever you decide." And 10 minutes later, dressed up, being like, "No, actually today I have this group things that I wanna do with my friends, so I want to go."

Laetitia: It was so easy rather than if I had pushed him in the direction of going and getting dressed and, you know, adding more demand. I was just like, "You know what? You wanna stay in bed with your pajama for the whole day, you may as well do that." And it's really hard. I am telling you, I'm not always so relaxed.

Laetitia: But I guess today I had lots of compassion because myself, I'm starting to feel a bit sick. And so I guess I was just like, "Yeah, I would love to have a day in bed reading." So maybe I had more compassion today for that thing. But it's really something we need to be open to a different way, right?

Sarah: It's such a different way. Yeah. And I think that giving ourselves permission as parents is the first step, right? And there's been so much unlearning I've had to do as a parent, and it still comes up, as you say, like those days where you have less compassion or your need is like, "Please go to school because I need a break."

Sarah: Or, "I don't want to have to respond today to the heaviness of, you know, you being unable to do this," whatever it might be. Because it comes with, sometimes it comes with an emotional fallout when our children genuinely cannot do what they wanna do. So I just think about, every day I'm having to, and sometimes, bless them, it's other people saying, "So Sarah, is that actually essential?

Sarah: Are you holding yourself or your children to a standard that, you know, like, doesn't fit their neurotypes, doesn't work for you guys?" It's constant. It's constant work to evaluate. But I am so grateful for having learned from many incredible people who have walked this journey before or, you know, or are further into the journey.

Sarah: Hey, it's okay to let these expectations go and do things differently. And you also need, if your child's going to school, you need your school to be on board with that. You need your therapy team to be on board with that. Because if you adopt this shift, and you've got an external pressure, or you're being told you're wrong somehow, it's very, very hard to have that genuinely open, spacious response that you had this morning.

Laetitia: Completely. Yeah, we're very grateful that we have everyone around us working in the same philosophy. But I completely agree with you. It's a journey, and it's so good to be inspired and at the same time be challenged in the way we do things because we've just, this is the way we've been raised, or this is the neuronorms, or this is, you know, the way society is expecting us to behave.

Laetitia: And I think for us, in our own journey, living so far away from home is actually super helpful because we don't have, you know, it's super hard in many ways, but we don't have the grandparents, the uncle, auntie, you know, the societal pressure as much, being like, "This is what you're supposed to do."

Laetitia: We can design our own rules and way of being in our own small ecosystem and then choose who we welcome in our ecosystem.

Laetitia: Whereas I see with some other families, and it's not a question, but maybe I can ask you this question, but in some families where there is also as part of the ecosystem the grandparents and auntie and, you know, people who are involved who may not have lived experience of PDA and raising PDA or being PDA themselves, so may just dismiss it.

Laetitia: So I don't know if you wanna talk to that. It was not a question that I asked you, but as part of your social work and when you may see some dynamic coming into place, that, you know, we wanna be compassionate, we wanna be curious, but there is also an environment which allow it to be more possible than other environments.

Sarah: Absolutely. And I think you're touching on, like, one of the most painful experiences I've heard from parents where their own parents or their in-laws, as you say, extended family, and it can even be friends, you know, because we don't all of a sudden just get new friends when we discover neurodivergence and PDA in our families.

Sarah: We've got existing relationships, and we've known each other in a certain way. And then when things shift because maybe you're needing that... Like, you're essentially, you have no choice really when it comes to, you either shift or the suffering increases.

Sarah: So, and that's a very... It is a very painful experience to have people saying you're getting it wrong. That maybe, I've heard of people being told, parents who are doing a wonderful job of accommodating and making changes being told that they're actually doing damage. Through a lack of understanding of the people, you know, beyond them.

Sarah: I also hear this comes up in relationships. Often the dynamic I've seen is that the mum has gone and done lots of learning and thinking about this, and had conversations with people to process and come to a place where they really wanna make changes. And the dad, in heterosexual relationships, it's perhaps he's reluctant, hasn't engaged in the same way in the process of learning and understanding, and that causes so much difficulty as well.

Sarah: A number of families who are navigating that. And the good thing is that often I see, when I actually get to meet the dad, I see this protective nature, this real love for the family, and he's fearful because he's got the ideas that he's been raised with. And he's just like, "Well, this is how you do a good job as a parent, and I'm gonna let my family down," or whatever it might be, and it's fear.

Sarah: But then as we kind of talk more about PDA and the nervous system, and unpack some of those things, it's incredible to see often that really protective, loving parent shift.

Laetitia: I love this. Thank you for sharing this. It's so beautiful, and it's backed by our own research, you know, on 1,091 family, where we saw that the hardest, one of the hardest part to navigate is relationship with family, extended family members and friends.

Laetitia: So yeah, thank you for sharing that. So I just wanna ask you one more question, because I love that you do this somatic social work into your practice, and I would love for you to share a bit more around how does a somatic and body-based lens add something that behavioural framework that we talked about, or cognitive framework, miss about PDAer and autistic people?

Sarah: Oh my goodness. I mean, I could talk about this for a long time. So, but what I think I might just touch on my own experience. So I'm a late identified autistic ADHDer. I also identify as PDA, and I only found this out, oh, in the last five years. So before that, I had done a lot of, like, accessed a lot of supports and tried to do therapies.

Sarah: Lots of them were cognitive, so just engaging with the cognitive mind. And I found that that was fairly ineffective for any sustainable change or for understanding myself because so much of what I'd experienced and what was going on for me was living in my body.

Sarah: And to tap into real change, real understanding, real insight, I needed someone to hold space for me and be skilled in working with connecting with the body.

Sarah: And so, and often our experiences don't necessarily make sense, and this is especially true for people with these neurotypes, don't necessarily make sense when we just talk about it. And we can actually kind of get caught in loops trying to make sense. Often we can have really strong minds as well, that make decisions about things, and it's this way or it makes sense this way.

Sarah: And we can get stuck because that's only a portion of what our, the true nature of our system is. That cognitive mind is only a portion of it. And so I think when we involve the body and the somatics, we're able to let go of that conscious mind a bit, and the stories it tells, and the ways in which it can keep us stuck, and find some space.

Sarah: So we can find some spaciousness and regulation in the body. So I guess the thing I've seen since I've been doing this work, so I ended up shifting into, for myself, my own processing and support being a somatic approach. And that was probably before I recognised my neurodivergence, so it's been quite a while that I have engaged in that.

Sarah: And I started bringing it into my work many years ago, actually, in a really basic way. I would meet, probably a lot of us were unidentified yet, because at this point in time I was doing mental health social work, probably seeing a lot of unidentified autistic ADHD folk. And they'd be telling the same story kind of each week, and I'd be trying to go somewhere different and we'd be stuck.

Sarah: Or they'd be intellectualising something, and they would do it brilliantly, but be missing, like, dropping in and really feeling connected to themselves. And I would maybe just ask a question of, "Well, where do you notice that in your body?" Or, "What's happening in your body right now?" And it was so telling, because they would often look at me like I had two heads.

Sarah: Because we kind of have all been managing life by just kind of like head up. You know, like, just forget the body, just use your head. It'll get you everywhere you need to go. It'll work everything out for you, and so really disembodied. But once, if they could connect to, they'd be like, "Oh."

Sarah: Just this new information would come to light from a sensation in the body, or we'd ask, if it had a colour, what colour might it be? Or if it was a weather system, what kind of weather? Would it be sunshine? Would it be clouds, rain? All of that, and we just get all of this new information about a situation or an experience, and they'd leave going, "Wow, I just feel completely different."

Sarah: And it doesn't actually feel like hard work.

Laetitia: It's a shift.

Sarah: It's an actual shift, yes.

Laetitia: Yeah. Yeah. It's an actual shift, and this is something that I don't know if you know about my previous work, Sarah, but I used to do a lot in psychodrama therapy. We ask people to just play and play with other people, and it's just you get outside of the thinking.

Laetitia: You get into the doing and the being and the acting out, and just the playfulness of without any attachments acting out what's been happening and how you've been feeling. So yeah, I love that. I just, the more I learn about your work, the more I love it. So for anyone who is listening to this who wants to dive even more deeper into Sarah's world, and I know you have a beautiful book that you've released as well, would you mind sharing with anyone, everyone listening to this where they can follow your work, how they can buy your book, any things that you may have as resources?

Laetitia: And of course, everything we'll be putting in the show notes for anyone who wants to dive into it. And this is an invitation, PDAer are listening to this, we are not pushing anything to you.

Sarah: Is that an invitation? Yeah. Or maybe we should say, "Don't come and look at my website."

Sarah: It's brilliantlittlegems.com.au, but don't come looking. But if you do, if you really, really wanna come looking, you'll find resources, you'll find blog articles. You'll find, yes, a story about my brain written for children, to explore demand avoidance. And you'll also find for teachers or for those who are wanting to support teachers, so allied health clinicians or families wanting to share with teachers, my toolkit for supporting PDA at school.

Sarah: Ooh. So that's all of my favourite resources that I've pulled together, and I've added some extras. I've created some more. Everything, and the process and the framework I use for supporting children with a PDA profile at school through the adults around them.

Laetitia: Love it. It's brilliant. I highly encourage anyone who doesn't wanna look at some point to explore that.

Laetitia: Thank you so much, Sarah, for joining me today. It was a delight to see you.

Sarah: Thank you. Thank you for having me.

Laetitia: Welcome now into a new Pulse Check with Zoe on the Neurodivergent Pulse podcast. So Zoe, how do you know when you're hungry or when you're full?

Zoe: When I'm hungry, I have this feeling straight away that I need food or else I, like, starve to death, basically.

Zoe: And when I'm full, my belly starts to ache. And I feel like I've eaten too much.

Laetitia: And what's happening with thirst then?

Zoe: Thirst is basically the same thing, but I just need it even more quickly, because then my mouth gets all dry.

Laetitia: So it's in the last minutes that you feel you need it, is it?

Zoe: Yeah.

Laetitia: Yes. Okay. And what helps you to connect better to your body?

Zoe: When I don't eat fast food.

Laetitia: Yes.

Zoe: I would definitely just keep eating and maybe eat too much that I feel a little bit sick afterwards.

Laetitia: Okay. Thank you, Zoe, for sharing your experience with feeling inside your body, interoception, about food and thirst and everything. We're very grateful for your experience being shared here. Thank you.

Zoe: Bye.

Laetitia: Bye. That's a wrap for 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.