The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Understanding PDA with Sorcha Rice
In the latest Middletown Podcast, we chat to Occupational Therapist, Sorcha Rice. Sorcha brings her expertise and lived experience to discuss PDA (Persistent Drive for Autonomy). We discuss what PDA feels like and what supports might be useful at school and at home.
Welcome to the Middletown Podcast. I'm Kat Hughes. I'm a researcher at Middletown and I'm also autistic. In this episode, I chat to brilliant occupational therapist Sorka Rice. Sorka talks about her life with PDA, that's a persistent drive for autonomy. She's so compassionate and knowledgeable about the topic, and she brings such a unique perspective that mixes lived experience alongside research and professional experience. Sorka was brilliantly honest and practical in our conversation, which does include mentioning of mental health challenges and disordered eating. I'm so thankful to have had a chance to learn from her. I hope you enjoy our chat. Sorka, thank you so much for joining us on the podcast. I'm delighted to be able to chat to you. Um I says I wanted to start with a big question. So what exactly is PDA?
SPEAKER_01:So PDA is a persistent drive for autonomy. But if you're looking up research or books and stuff, if you Google pathological demand avoidance, more things will come up because that was originally what it was termed. Um, but I'm autistic and have a PDA profile. And I think the persistent drive for autonomy more accurately reflects my experience. Um, so what PDA is, is when there's demands or pressure put onto my nervous system. So they could be external. So if someone's like, go have a shower now, or eat your dinner, or my internal demands, so that would be like if I need to go to the toilet, um, if I'm hungry or thirsty, my body's like, okay, you need to get up and have dinner. Um, when my brain gets this kind of demands or pressure, my nervous system goes into fight, flight, freeze or fawn. So I have a survival drive. So that means like I don't really have control, like I can't think about consequences or reward systems. Like my body is just like, oh, I need to protect itself. Um, so that can be really hard for like school systems or different areas or like having a job where there's lots of demands or pressure. Um so yeah, so that's kind of what PDA is. It's all about your nervous system.
SPEAKER_00:And you mentioned there that that sort of how we describe PDA has changed quite a lot. Has our understanding then of PDA changed quite a lot as well?
SPEAKER_01:Yeah, because there are a lot of kids when I first started, I was seeing oppositional defiance disorder. Um, and I was like looking it up, but I was like, this does not make sense for the kids that I'm seeing. I was like, they're not defiant, and it's not about like it just didn't make sense. Um, so oppositional and defiance disorder is in the DSM 5, and it just focuses on like the behavior or the defiance that you're seeing, and it's not recognizing beyond the behavior, which would have happened to me as a teenager as well. So when you're just focusing on behavior, and then the strategies will all be about behavior support. So it's like behavior ABA reward systems, you know, like oh, like let's increase the compliance to get the defiance out of you. Like it just doesn't work. Um, so yeah, I think we're gaining a better understanding of PDA and kind of seeing that, okay, it's not about the behavior that you're seeing, it's not about a child who can't go into the classroom or is refusing work. We're looking at what's happening their whole day, why is their nervous system so dysregulated? Um, so yeah, I think there's a huge shift in understanding. And then with that, we're getting better support, um, which is amazing.
SPEAKER_00:Definitely. And yeah, there's an irony in the fact that for so long no one was putting themselves in the shoes of the autistic person who was experiencing it. And supposedly that's the thing that we're not good at. But yeah, it's it's interesting that it's taken such a long time to look at what actually might be happening internally to the person.
SPEAKER_01:Yeah. And I think like I think it can be hard because a lot of people like I would have been called like manipulative or aggressive. And so like it's like, ooh, you're just trying to manipulate or always get your way, or I would have been called bossy, which is rather crazy. Um, but like that's I think that can be hard for people to kind of get past because it's also dysregulating for them, and they're like, ooh, I don't know what to do. And then like all parenting strategies and all school systems are based on compliance, and that's what people feel safe doing because it's like, well, at least I'll have predictability because I will drill this reward system in, and it has to work because it works for everyone else, and so then when it doesn't, and you have the opposite effect, it's just like, oh my god, this is such a scary situation. So I think it's hard for everyone to kind of understand PDA.
SPEAKER_00:Yeah, absolutely. That makes a lot of sense. And then I don't know, is this a difficult question to answer? But what does it feel like internally then when that sort of demand is is placed on you and you're you're feeling that anxiety?
SPEAKER_01:Oh, so like it's different at home and like my experience in school or work. So, like if there's a demand at home, I just go into fight um and I can't keep it in. Like it's just like it, my body just reacts before I can. Um, and then there's loads of like shame afterwards. It's like, oh, because it's like not me control, like I have no control over it, then that's also a trigger on top of it, which then makes me more anxious and increases the shame because it's like, why can't I even control my own body? Um, but then in like work or in school when there is demands or pressure, I just kind of like freeze and I can't talk. And I'm just in like, uh, where I try to find my own ways of autonomy. So like I would do go above and beyond for like work projects or do things in my own time, or like stay late after work and do things that way. Um, but yeah, I think it's interesting that my survival drive reacts differently in different situations, but it's just like what's the safest thing to do? Like I know if I were to like flip a table in school, there's gonna be even more demands and more pressure put on me. So it's actually safer to stay quiet and just internalize all that distress.
SPEAKER_00:Yeah, which must be incredibly difficult as well, like so uncomfortable. And and yeah, I can't even imagine.
SPEAKER_01:Like it was, and like what happened for me, like in school, when they because I was in a boarding school, um, and for the boys it was military, so it just kind of ran over to the girls as well, and I was there all the time, so staying there. Um, and so when they increased their compliance and all their rules and stuff, what I did was I was like, I have to find control or autonomy somewhere. So I did that by controlling food because I was like, I can control how my body feels if I'm hungry, I can control that, and at least it was something I could control. Um, but then because I wasn't eating enough, I started fainting, which then was like a huge loss of autonomy on top of that, and then I just had a school breakdown and had to leave.
SPEAKER_00:Oh my goodness. Yeah, I suppose I was gonna ask about sort of PDA having an impact on your school life in terms of almost just studies, but that's so much bigger, isn't it?
SPEAKER_01:Yeah, because I think like I didn't like studying, or I didn't like, you know, it's like, oh, you have to study for this exam. I just wouldn't. I would prefer to sit in a classroom and really understand the concepts. Um, and then that was kind of enough for me to get by on like exams and stuff. Like, I didn't find academic work difficult, but in school it was like the social pressure, and it was all this pressure you have to get into college and you have to know what to do. And it was just all these other things that were impacting me and triggering my PDA. Um, and like having teachers that like use strict tones, or like even if like I was so quiet in school, so I didn't get in trouble. But if someone in the class did, that would still trigger my nervous system because the teacher had like raise their voice, and I was just like, everyone needs to follow the rules and just be quiet. Um, but yeah, I think school is really difficult for PDAers, and I think at the moment it's really hard because parents and maybe like if they're in therapy, they might be more child-led and neuroaffirmative, so they're not as much demands or pressure. Then in school, we're still so behind, we're still so compliance-based, and we're not meeting the needs of children because of lack of resources and all these kind of things. So then we're having loads of school breakdowns because why, if they're child-led at home and their needs are being met at home, why would they put themselves in a situation that they know they're not going to be met? Um, so yeah, I think we really need to shift our understanding of how to support PDAers in school. But I think the NCSE relate framework is incredible. And I think it's such a great guide. So you can Google it and you can read it for free. Um, and I think it just summarizes the foundation of how to support a PDAer.
SPEAKER_00:Brilliant. And then is there support that you found very helpful either in school or even now? Are there supports that that you think are really, really useful?
SPEAKER_01:Yeah, so um when I was my first school burnout, it was like when I was 16, 15, or 16. I was in the boarding school, and so I had to leave for like six months. Um, and we just went, my parents were living in Saudi Arabia um with my sister. So I just went back to Saudi and there was like no one, my parents didn't tell me I had to go back into school at this time. Um, there was just no pressure. It was all just about like we're gonna help you get better. There wasn't even pressure to like you have to get better, you know. Like it was just like you're taking a break, nothing else matters. Um, and I just like we focused on regulation, like all these strategies were done without realizing or making the connection that I was autistic or had PDA. Um, but we focused on regulation and unconditional positive regard. And for months I just like like fixed my sleep cycle and everything like that. And then to feel safe in school again, what I did was I volunteered in the local primary school in Saudi and helped kids with math for like 45 minutes a few days a week. And that just really helped me feel safe in school and build up kind of like the ability to be in that environment. So that's why I think when you're supporting PDAs, a lot of the times it's like, well, you have to go back for a full day of school because they don't want to, if they get used to like a half day or reduced timetable, they'll never go back in. But I promise you, if you try to get them to go from burnout to a full day of school, they will never go back to school. Like you have to do a reduced timetable and make them feel safe and just focus on their regulation in school. Um but yeah, I think that was really important. And then what was hard to then, so I took a break and then my family moved to Florida and they went to a day school with my sister. Um, so my sister is like a huge part of my regulation and safety. So we were in school then together. Um, but my first burnout was in February, and then of course, my second burnout was in February again. Um, and just like a year later, and I think I felt like I think that was almost harder because I was like, I've done all this work, I've taken I've taken a break from school, I just couldn't understand what was going on. I got all these labels that were just focusing on the behavior and not looking at me as a whole. Um, and so I had a complete breakdown in school and then had to take um, I only took like a few days off that time, but like it was really difficult to go back into school. Um, but I had this amazing guidance counsellor named Miss Williar. And so she said that I could come into her office any time of day for as long as I wanted. I didn't have to explain why I was there. I could sit in silence and watch her work, or I could talk when I wanted, but she was just like the epitome of unconditional positive regard because like I knew I knew she respected me because one thing about PDAers is we know if someone doesn't respect us or like you know is has a hierarchy or thinks badly about us, like we can pick it up so easily because we're so heightened to looking for threats in our environment. But yeah, so she just was so amazing. Um, and like some days it was just complete silence, but it was so regulating and it made me feel so safe in school knowing that I had that. And like none of the teachers, if I got up to leave, none of the teachers could say, like, why are you leaving? You know, so they didn't even have that pressure of trying to explain. Because what happens when you get overwhelmed is it's so hard to describe, and then like it's so hard to be like, okay, I need to go to Miss Villiers' office because I'm dysregulated, like, or I need to move and break. That is so incredibly hard. Um, because oftentimes with PDA, you have interception difficulties, so you don't realize how your body feels until they're extreme. So you don't realize you need to move and break until you're very dysregulated. Um, so yeah, being able to go to her and just be safe in her office was definitely the reason why I finished high school because it made such a difference, and it's such a small thing as well to have just one safe adult. Um, so I think any school can do that.
SPEAKER_00:Most definitely, yeah, that's so important, isn't it? And it's it is amazing that before you knew that you were autistic or anything about PDA, you were kind of figuring out how to put things in place for yourself and the people around you are figuring that out. It's it's really impressive that you could do that, I think.
SPEAKER_01:Yeah, I think it's just like the drive for autonomy is like I can't survive with this. Like, there's no way I could get an education if I keep doing this. Um, so yeah, I think, and I think if you watch children, like what I found in sessions is they're trying to regulate their nervous system, they just might not have as much sensory input as they need. So, like children will often like headbang and like they're rocking back for the vestibular input and they're hitting their head for the proprioceptive input into their head, and they're just trying to regulate, or they might be like stimming, which is never you should never stop stimming, but they're trying to regulate their nervous system, or they'll be like laying on the table in school, so they're trying to get deep pressure in their stomach. And so, like, if you watch children, they're trying to regulate themselves, and if you just support them to get maybe healthier, because you obviously don't want headbagging, but like better full-body depressure, which could be like a platform swing or like a weighted ball. If you just give them more intense sensory input, I think it really helps.
SPEAKER_00:Definitely. Yeah, that makes so much sense. And as you mentioned there, you're an occupational therapist now, and I am 100% team occupational therapy. It changed my life completely when I started seeing occupational therapist. And um you're just like the dream person to become an occupational therapist as well from a client perspective. So, what was it that that brought you to occupational therapy?
SPEAKER_01:Um, I think like so. So I had a burnout in high school, and then a year later, and then of course in college. So um I'm half American. So after my secondary school in Florida, I went to college in Orlando. And in America, you do like four years of an undergraduate degree, and then you usually do a master's and like choose what you want to do. So I had no idea what I wanted to do. Um, I've always loved connecting with people, which is PDAers are always trying to connect, might just not have the social skills that are their typical social skills. Um we're always trying to connect and like I really wanted to understand people. Um, but on I think it was like my third year of college, I was like really trying to avoid the burnout, like I knew it was happening, but I was just in denial. I was failing every class except physics because I love cause and effect. Um, but I just wasn't coping in school at all. Um, and so then I had to take a break over the summer. I just focused on regulation. Um, and one thing about regulation, I think it's with a PDA or it's really hard to get them out of burnout and to start helping them regulate. Um, but what helped me is my younger sister, so she's two years younger than me. She came home as well at the same time, and we would get up together at the same time in the morning, but she didn't say anything to me. She just got up and like modeled getting up. And then I'd make my bed and we'd just go out the door because like reducing transitions kind of reduces the pressure as well. And she didn't say, Do you want to go on a run? Do you want to go on a walk? Um, and she didn't even say, like, I'm going on a walk some days, because I would have thought that was a demand or pressure, but she just went and like she thought, I don't care if Sorca comes with me, I'm going and like I'm doing it for myself. So that made me want to join. Um, so we did that every day, and that helped my regulation. Um, so yeah, I think like modeling if your child or teenager is in burnout is so important, and just genuinely being like, I'm gonna go on a walk, they can join me if they want. Um, but yeah, now I lost my oh, sorry. So then I lost my train of thought. But yeah, so then after that kind of burnout, my mom or my neighbor, um Melanie Saris, is an OT. And so my mom's like, I think you'd love this. So I shouted her and I was like, oh my god, this is so amazing. Um, so yeah, I love that it's child led, you're focusing on nervous system regulation, which is what obviously changed my life and helped me so many different times in really difficult situations. Like all we focused on was nervous system regulation without realizing. Um, so yeah, that's why I became an OT.
SPEAKER_00:And what do you find most rewarding about it now?
SPEAKER_01:Um, I think connecting with neurodivergent children. So like I didn't realize I was autistic until I did um a placement in OT school, and my placement coordinator told me, um, but she didn't explain what autism meant, she just was like, you're autistic, and then just left it. Um wouldn't say it's the best way to tell someone, but so I just kind of like had that in the back of my mind, and I was like, hmm, okay. But then I started working with so many neurodivergent children, and I'd be explaining what it meant, and they're like, Are you autistic? And I was like, hmm. So we think it's seeing so many neurodivergent children like live their best lives and be so happy, and like I love autistic play. Like, um, I'm also a gestart language processor, so I would have had a like movie in my head playing with my sister, and I had to tell her exactly what to say and where to sit and how to touch the toys. Um, and I found that so regulating. So I think it's so nice to see kids do that. And I love being child-led so I can allow them to like I don't care how I have to sit or where I have to look or what I say, and like I know how meaningful it is to them. So I think that's what I find so rewarding.
SPEAKER_00:That's gorgeous. And how important is that for them to just feel understood and represented? Like, I can't imagine the difference that that's making for them. That's gorgeous. That's so lovely. Um, and are there some approaches that you use with autistic young folk when they're kind of dealing with that anxiety PDA?
SPEAKER_01:Yeah, I think like for starting my sessions, like I'm always trying to reduce demands or pressure. Like, you obviously can't be completely um demand-free. So that'd be impossible because even like a building adds demands or pressure and expectation um and the time of day and all these things. So I just try when someone comes in, I try not to talk because like lots of talking can be overwhelming. Um, and I focus on safety and autonomy. So I just they know that they can leave. So what I've noticed a lot, especially in children that are really young and might not be able to verbally communicate, they will leave the session. So they'll open the door and probably leave the first session like 50 times. Um, but it's just allowing them to do that because that's testing an exit plan. And exit plans are so important for PDAers. Like I didn't realize how much I relied on exit plans. Like everywhere I go, I'm like, okay, this is how I can leave. I can leave whenever I want. These are the steps, and I go through it over and over and over in my head. Um, so that's what a lot of kids will be testing is like, can I leave if I want to? Am I safe here? And just allowing them to go and like explore the whole building and do all these things, obviously in a safe manner. Like you can follow them, or sometimes if I know that they're becoming dysregulated and they need a break from me, the parents will follow them. So I think it's just like really looking at their body language and reading that and responding to it. And also, I think gestalt language processing is so important to understand for PDAers. So when I'm becoming dysregulated, I lean into my gestalt. We'll use them more. Um, and like obviously I have specific gestalts. Oh, maybe if you don't know what gestalt language processing is, it's where you see things or you process language and things in chunks. That is a very bad explanation. Um, but yeah, so I have specific songs or specific word like sentences that don't necessarily mean what you think it is. So I say, like, I have to say it in an exact tone, but I'm just not gonna do it. But it's like, I can do this, I can do this, but I'm only human. Um, and I scream that. And so that means like, oh, I'm really anxious, I'm really stressed, I'm really nervous, I don't don't think I can do this. Um, I it's usually like before a podcast interview or like before a talk or something, I'm like, oh, I can't do this, and I say that. So, like if you heard me, you might think, oh, you just sing me a song where I'm like, no, I need safety, I need regulation right now, like, don't add to the pressure. Um, so I think figuring out if they're a gestalt language processor, figuring out what their gestalt mean and listening to that, because then you know, ooh, I need to back off, and like you really need to focus on supporting their sensory needs.
SPEAKER_00:That's brilliant. Yeah, that's really, really helpful. Um, the more I hear about PDA, the more I'm like, oh, I I relate hugely to that. Yeah. Yeah, that's interesting. It's very, very interesting.
SPEAKER_01:Yeah, because there's it's a lot of people can be internalized PDAers, so they might not have like I'm definitely externalized, but you can have like it'll a lot be focused on yourself. So that might be like picking your skin, having eating disorders, um, being like really extroverted on this like character out in public, but then you like crash at home. Like, so I think it's really interesting to understand PDA, and a lot of times it can be mass. So, like if you're a teacher and a parent is telling you, I think they possibly could have PDA, I would just focus on all you need to do is autonomy, connection, and supporting their nervous system. Like you don't need a diagnosis because these supports would help any neurodivergent or neurotypical person. Um, so it's just trust parents because they see their child unmasked and dysregulated and they are the experts of their child.
SPEAKER_00:So yeah, absolutely. And then you mentioned those are sort of things for for parents or teachers to to think on. Would you have kind of specific pieces of advice um for parents or teachers?
SPEAKER_01:Um, I think the one thing I would recommend is reading the book When the Naughty Step Makes Things Worse by Dr. Naomi Fisher and Eliza Fricker. And I also recommend following them on Instagram. Um and if you also search their names on YouTube, you'll find like some free webinars. But the book When the Naughty Step Makes Things Worse, I think really summarizes how PDA feels. And then like a lot of times you'll hear a demand avoidance. So parents might be like, or teachers might be like, oh, but like I can't talk. Like even me just saying something will trigger their nervous system. Or like sometimes for me, if someone just looks at me or they come into the room, I can feel their energy and I'm like, get out, you know. Then it can be overwhelming because like parents are like, well, I can't just move out. Like, why am why is everything I'm doing triggering their nervous system? Um, so I think reading that book will help you understand pressure, will help you understand the buildup on their nervous system. So it might not be because like it can be for me if I had a long day of work, and then if my sister or my family are like, how was your day in work? I would be like, ah, you know, like I just can't cope. And it's not about the question, it's like so much more. Like I've built dealt with all this demands and pressure all day, and I'm like, not another thing. Um, and I think it's also hard because like on a Monday, if I'm really regulated over the weekend, I might be able to answer the question and be like, oh, I did this and this and this. But then on a Friday, if they ask me a question, I would just explode. And it's like, why can I ask one question a question one day and not the other day? Um, so I think that can be really difficult. So I think read that book, it'll help you understand. Um, if you download Audible and have a free trial, you can listen to it for free for 30 days. So it is accessible to anyone and everyone.
SPEAKER_00:Brilliant. That's fantastic. And also following you on Instagram, I think, is really helpful as well. And then would you have any advice for a young person who's dealing with PDA?
SPEAKER_01:Yeah, I think like a lot of the times with PDA, it builds up and builds up, and you're like, I can control this. Like I often think of it as like a balloon inside of me, even though I hate balloons. Um like traumatized by them popping, but I think of it as a balloon, so it's like filling up. So like in the morning, um, I can't handle like any pressure, any questions. So my balloon, I'm trying to protect it as much as possible. And then you go into school and the balloon gets bigger and bigger. And as the balloon gets bigger, you have to protect everything around the balloon because one small thing could pop it. So then it's just like protecting it, protecting it. And then your parent might ask you something in the evening, and it's one tiny thing, and then just pops, and you're like, why can't I cope with just a question? Um, and I think it is really frustrating, and it's just like it's just hard to understand. Um, but I think being like understanding that it's okay, like this is your nervous system, it's not something you can control. Um, and I think just focusing on figuring out what you do for regulation. So I have loved swimming forever. So in high school, I swam like two hours a day every day because I loved I could go underwater and it was just completely silent and I could just control everything. Um, but yeah, I think it's bringing out what you do for regulation and just leaning into that um really make a difference.
SPEAKER_00:Yeah, that's brilliant. And then my very last question for you is um if you could go back in time and give yourself some advice, what advice would you give?
SPEAKER_01:So I think uh when I had school burnout, I didn't know anyone in primary school that had to leave school, and then in secondary school, I didn't know anyone who had ever done it. It was like 15, 16 years ago. Um, so I just didn't know anyone who had to leave school, and I thought I was like giving my up my whole future because I had to take a break from school. I'm gonna get emotional. But I just thought I was like letting go of my future. And uh sorry. But yeah, I think it was just like so hard, and I felt like such a failure. Um, sorry. So yeah, I felt like such a failure and that like I didn't know anyone else, and I didn't understand why I just couldn't cope in school when everyone else could. Um, and then obviously happened again and again because I was, I think I was going back into school too soon, and I obviously didn't understand what was dysregulating me in the first place. So I was going through these recoveries and it's regulating my nervous system, and then I go back into the environment, the same environment, and just happen all over again. So I think I would say that it's okay and you're not a failure. Um, I still have like a lot of shame um from those burnouts. So I just didn't understand, and I just I think it's just really hard. Um, and I just couldn't even ask for help either, because it was another demand. It was just like, oh, everything was going wrong. Um, but I think understand that it's okay um and that I'm not the problem, it's the systems around me and that we have to change them, we have to make them more neuroaffirmative. I am so passionate about trying to change schools. Um, and I think we can do so much in schools, it's just small changes that would make such a difference. So, like if you're a teacher, go and read the NCSC relate framework. You can contact the NCSC, you can become a relate school. Um, I think using like the autism level up program, um, because I don't like the zones of regulation because it's as an autistic person, I can't identify my emotion first. Whereas like the autism level up is about your energy. So I can understand my energy. Um, and so I think looking at the autism level up program, it's free on their website. Using those kind of things will make such a difference.
SPEAKER_00:Thanks so much for listening to the podcast. This is a conversation-based interview designed to stimulate thinking and hopefully support the development of practice. It's not intended to be medical or psychological advice. Views expressed in these chats may not always be the view of Middletown Center. If you'd like to know more about Middletown, you can find us on X at Autism Center and Facebook and Instagram at Middletown Center for Autism. Go easy until next time.