Episode 16: Sarah Lovett (Social Worker) - Embracing Neurodiversity and PDA

As a mother and social worker with a profound connection to the world of neurodiversity, Sarah's story is both a testament to personal strength and a guidebook for those navigating similar paths. She unpacks her journey from paramedic to social work, spurred by her son's autism diagnosis, and how this led her to identify and embrace her own neurodivergent traits, including PDA (Pathological Demand Avoidance). Guiding us through the labyrinth of parenting twins with PDA, Sarah's candid revelations about the empowerment found in diagnosis and the advocacy needed in our communities suggest that the understanding of neurodiversity is not just a personal quest but a societal mandate.

 Raising PDA Kids https://raisingpda.com Declarative Language Cheat Sheet

https://www.ourpdakids.com.au – For resources and research and service

PDA Australia and NZ http://pdaanz.com

danabaltutis.com, mytherapyhouse.com.au, https://mytherapyhouse.com.au/your-childs-therapy-journey/ https://www.danabaltutis.com/services

Transcript

Dana: 1:23

Hi, Sarah. Welcome to my podcast, the Empowered Parent. I'm so, so excited to have you here, and today we are going to talk about PDA, or Pathological Demand Avoidance, or Extreme Demand Avoidance, and what that looks and feels like for children and families. You have a Master's in Social Work and describe yourself as being a proud autistic woman with a PDA profile, and you also parent boy and girl twins, both of whom are awesome, awesome autistic PDAers and really highly intelligent and fantastic kids.

Dana: 2:07

You help many parents and families who are either PDAers themselves or live with someone who is a PDAer. You run a successful business called Our PDA Kids and have clients in Adelaide and interstate. The link to your website will be on the comments of our podcast. Excellent, okay, I invited you here today because I feel it's so important for empowered parents like yourself because I definitely see you as an empowered parent to share their stories with other parents, especially those who may be just starting their journey of raising a neurodivergent child or two, or those who are really struggling in this domain. Sarah, could you please start by telling our listeners a little bit about yourself in your own words, about your own story as a neurodivergent woman and mother, and how do you do it all?

Sarah: 3:05

Thanks, Dana, for having me here today. So yeah, hi everybody. So I'm Sarah and I guess my journey is both similar and different to others. So I started out as a paramedic in New South Wales. I have a very strong medical background and I was really lucky that in 2018, when we moved our family to South Australia which then my twins were three I had the opportunity to keep studying in paramedics or go and try something new, and I'm all about the lifelong learning. So I went back to uni and got my Master's in social work, which is this is really great.

Sarah: 3:38

I came from a trauma space and was really interested in domestic violence, sexual assault as my history with paramedics, and then thought, yeah, let's do that. Then life happened and my little boy started demonstrating behaviors that I didn't understand, and we go down that pathway, which many of you will understand very well, and he gets an autism diagnosis. As someone who used to work in the autistic space in my 20s, I agreed with the diagnosis, but something wasn't quite right. So, like many of you will understand, you keep looking, you keep looking, you keep looking and eventually I got that beautiful light bulb moment where I found PDA. I'm still studying at this point and I finished my study.

Sarah: 4:18

But my son has gone into burnout which we'll cover a bit later and he stops going to school and I start becoming a homeschooling parent.

Sarah: 4:27

So I now in my brain is telling me I've just studied for two years for no reason, because what I'm hoping to achieve in my professional life given I'm quite driven in my professional world is not going to happen anymore.

Sarah: 4:39

And some months pass and he comes out of burnout and I think I know what I'll do. I'll just start a business that helps other PDA parents and maybe I can help two or three families while I help my son, and that's a really good idea for me and I build a business and think this is going to be great. And 12 months later I have over 200 families and speak internationally sorry and have clients all over Australia and provide professional development, and I think that's wonderful. Through the process I get myself diagnosed, my daughter is diagnosed and now we live in a beautiful neurodivergent family where we can support each other and understand each other. And I think it's brilliant and I'm so proud that I got to start the business but that I got myself diagnosed and that I really embraced what that looked like and how much better it made my life, to understand myself better and why did you get yourself diagnosed?

Dana: 5:32

What were some of the I guess, the flags that you're going?

Sarah: 5:37

hey, this isn't right for me, it's a funny story actually and the person will know themselves when I say this is I was actually bailed up in one of my client sessions by a parent who asked me flat out five minutes into the session when I found out I was neurodivergent, to which I answered I'm not, I'm not neurodivergent. And she hassled me for the whole 55 minutes of that session until I got back in my car and I was like what just happened? And I rang my husband at the time and said look, this just happened. And he was like what just happened? And I rang my husband at the time and said look, this just happened. And he was like, oh, like there's probably something in that. And I was like don't be ridiculous. And hung up from him and rang my best friend and said, look, this has happened. And she said, oh, you might want to think about that. And I was like don't be ridiculous. And I rang my girlfriend, who is neurodivergent, and told her and she said yes, sarah, I was just waiting for you to get there yourself.

Sarah: 6:33

So I started thinking about it and, as the beautiful PDA brain that I have, within 24 hours I was completely convinced that I was autistic ADHD and I booked myself in for assessments. Whilst I completely validate those who do self-assessment and self-diagnose for autism, I very much am the sort of person who wanted the intellectual conversation with a woman that I respected and really wanted to engage that process. And I found that woman and had a lovely experience with her, a two to three hour conversation and I was so empowered within that time and also learned that I had PDA in that moment, which was embarrassing given I'm a PDA professional. But obviously it just showed me how different it can present in everybody, especially in adults, and I really loved being diagnosed and definitely encourage other women which I come across a lot in my work to be diagnosed and to understand themselves better, which in turn obviously helps you understand your children. That's great.

Dana: 7:25

And so people listening might say yeah, but how do you know? Like, how do you know that you know? How do people know that you have PDA, or that yourself I?

Sarah: 7:36

myself would have.

Sarah: 7:37

So I guess, there's a and I guess I'm lucky that I have studied social work, which is a lot about reflective practice, so I'm able to reflect on things from my childhood and my teenage years and my twenties about times. So PDA obviously is all about the need for the person to have overwhelming choice and control. So when I think about the few times in my life that I have truly struggled, it is when I've lost that control, and that would be my parents' separation. I really struggled a lot more than I should have given. I was 19 at the time. I really struggled that my parents separated and I couldn't control what was happening next. And then I actually went through IVF to have my beautiful twins. So in that time I struggled a lot more than other people around me because I lost control of the process. It wasn't the fact that I couldn't have children, it's that I couldn't control how I had children.

Sarah: 8:29

So I think there were some really big reflective moments and then, as I was able to speak to the person who assessed me about the day-to-day decisions that I've made, about why did I want to run my own business as opposed to working for somebody else, that's because I like being in charge. I like being in control. I, I like being in charge. I like being in control. I get to control my whole being now and as a PDA, this suits me perfectly and you can look back across your life at making decisions and how you parent, your parenting decisions that tell you, you have PDA Amazing, so let's go straight into it.

Dana: 9:02

What is PDA?

Sarah: 9:05

So PDA is a nervous system disability which is highly invisible. That is the child or the adult's body telling them they need an overwhelming sense of choice and control. So it is a cumulative disorder, as in you don't see a precursing event and then a big meltdown and then the after effect, like you might in traditional autism't see a precursing event and then a big meltdown and then the after effect, like you might in traditional autism. You see an accumulation of microtraumas, let's call them that happen across a day before we get to that meltdown point. So PDA is a profile of autism, just like those would know Asperger's is a profile of autism. Pda is the same concept that it's a profile under the autism spectrum. So it's part of the neurodivergent world and I guess it looks differently for everybody, which I love, because we really need to get away from this point where autism looks the same for everybody. It presents differently in our boys and our girls and across all people and I love that because because it's unique.

Dana: 10:05

So people, you know we see a lot of children that come here and you know they're not. They haven't got the classic autism symptoms, but they're really struggling in the world. They're finding it really hard because they're losing control. So we go down the path of let's have a look at PDA. Like you say, it is a spectrum. Where can people get the diagnosis? Like is it in the DSM-5?

Sarah: 10:38

or yeah, so obviously autism. Those who've been in the autistic world for a while will know it's extremely challenging when your child doesn't present like the classic DSM-5 guidelines. So for those who aren't aware, dsm-5 is the Diagnostic and Statistical Manual, where it's an international guide that has all disabilities and mental health listed and this is how psychiatrists, psychologists, pediatricians can diagnose children or adults with any disorder. Now, that language is not neuroaffirming, but that's what we're sitting in the medical space. That is how it's discussed. So autism sits within that guideline.

Sarah: 11:49

So you can be diagnosed autistic, but you cannot be diagnosed with PDA because it does not appear in the DSM-5. However, as we've discussed, pda is a profile of autism. So if you go to a PDA-affirming psychologist which I have a beautiful referral list then you can go and have someone who understands PDA enough that they will be able to say, yes, your child is autistic based on this and I can see they have PDA and you will have it written into your assessment document. So when you give that to NDIS it will be clear that your child is autistic, you qualify for NDIS if you get a level two diagnosis of autism, but that your child has a PDA profile.

Dana: 12:31

And what about schooling? Like, are there are schools coming more on board around PDA or is it more like a behavioral approach?

Sarah: 12:39

I have had both experiences. So schooling is by far the number one issue our children face because we're in a society that hasn't changed in the schooling space in a long time. So schools are very much about the educational need of all children in sitting within that student cohort. And for our kids, whilst they are beautiful learners, they, as we know, need choice and control. So they need to have choice and control how they learn. And this can be very difficult in schools. There are some schools who have go above and beyond to meet the needs of individual children within their student cohort, regardless if they have PDA or not, and this is wonderful and I can absolutely work with those schools because they have the right positive culture to support individual students. And that's all we need. We need open-mindedness and the understanding that flexible accommodations can be made to meet the needs of individual students and this helps students astronomically and it's wonderful.

Sarah: 13:38

There are definitely schools I have tried to support who are not willing to do that or don't have the resourcing to do that or are more in the old school style and which drives children out of school a lot of this time it isn't the school specifically, but it's a societal understanding that children should be in school.

Sarah: 13:57

Well, that's actually not the only thing, how we learn. So I do speak with a lot of families about and, whilst I am a huge advocate for the education system, not to homeschool, people can choose their own pathway. I think it can be difficult when students want to go to school but the school can't support their needs, but that there are actually other ways we can teach our children, and I think that's definitely been a journey I've been on, having homeschooled my own son for 12 months, when he chose that pathway for himself, and it's not something I wanted to do. So, for those parents who want to, congratulations to you, but I definitely was not one of you. I was forced into it from the situation he was going through in his PDA burnout, and it is a really difficult space when you start, but I haven't. That's the number one thing that I've learned the most about from supporting him in that space is how to homeschool and how to meet how to truly meet his needs in the moment.

Dana: 14:50

How do you homeschool Like are there lots of resources for parents, Because to me that sounds pretty scary.

Sarah: 14:59

It is extremely scary when you start, extremely scary when you start and I guess there's another arm of my business now that really supports PDA families who are going to homeschool about one how to logistically achieve it, how to complete paperwork to achieve it, and then actually what does it look like. So there is an abundance of resources about homeschooling. It was like a completely untapped area of my life. I was very lucky that I have a friend in Queensland who has homeschooled her children from the beginning, so she was a great resource for me, just to be a calming influence and be like it's okay, this is not going to break you. And I guess for the PDA space, which is where a lot of families go wrong is people try to take the curriculum they would in a schooling setting and they try and encourage their child to do it at home. Now that is the traditional homeschooling model and all of us who live through COVID understand that model and it was really traumatizing for a lot of us, especially for those clients I have in Victoria. But what I see most successful with PDAs would be called the unschooling modality, where you take the learnings of everyday life and you encourage your child naturally through your natural, day-to-day and that's how they learn.

Sarah: 16:05

So, for example, I would go food shopping and my son would come with me when he felt he could and he would ask if he could run around and pick out items for himself and I'd say, that's a great idea, but while you're doing that, like mummy's only got a certain amount of money, so can you please tell me how much they cost and add them up. And because he's such math smart kid, he would pick items that he wanted and he would add them up. So he would be doing math in the moment. Then he would scan items with me, so I was teaching some life skills. Then we would talk to people in the shop when he felt comfortable and we'd be doing some English work.

Sarah: 16:36

So there is natural learning that happens all the time. I live near the beach, so we would go to the beach and he would start a conversation about how we would throw the ball together and I would talk about physics. Then we would talk about sand erosion when we're in the ocean and rips. So you can cover geography and science and you follow the child's lead. For example, my son at the moment is teaching himself the flags of the world, so he is teaching himself geography whenever he wants to, how he wants to, and this is how his PDA presents. Because he is in control of his own learning and he can thrive.

Dana: 17:09

So that's really. That is so interesting, Sarah, and I noticed that you use sort of non-declarative language with your son. Is that right? Like you're not sort of giving him direction.

Sarah: 17:21

Correct.

Sarah: 17:22

So non-declarative language is one strategy in the PDA space that you can use and it's about giving information sort of.

Sarah: 17:29

I talk about it as in giving information into the ether in third person.

Sarah: 17:33

So when I want him to do something that I know is in his best interest for example, go to the beach, where we need to wear sun cream and a hat I might say to him oh it's so hot today, mate, like I need to go find my hat, which is telling him maybe he needs to look for his hat, opposed to saying can you please run upstairs and get your hat, which is a direct demand, which, in the PDA space, the demand is the thing that our nervous system is not coping with.

Sarah: 17:57

So that makes it hard for him to go and get his hat, opposed to me giving him choice to get his hat. And declarative language is difficult when parents first learn about it, because it's it's asking adults to change how they speak when they're very used to being a certain way. And I think this is the most challenging thing in my work is it's not about changing your child, it's about changing us as parents, about how we engage with our children and as neurodivergent parents, this can be quite difficult because it's hard for us to change and for those of us that have PDA, we have our own triggers of what that looks like.

Dana: 18:30

So I think it can be a very interesting space, difficult at times, but for those who are ready to hear the information and take a different approach, it can be amazing amazing and I know that we've worked a lot with families around declarative language by modelling as well, as there are speech pathologists in the US that have got webinars and then we've got also books about declarative language. So there are resources and I might actually add those as well, so that would be really good for all people that are interested in the PDA space.

Sarah: 19:04

Absolutely, and there's also a Queensland specialist named Kate Clenow who has an organisation called Raising PDA Children. If you look on her website, there is a sheet you can download for like a cheat sheet on declarative language. Kate is amazing. She runs a beautiful 10-week course in PDA space, but she has an excellent resource for declarative language as well, so let's put that on the comments as well.

Dana: 19:28

Sarah commands what are they demands? I know people have said they could be external, they can be internal. What does a day look like for a child that has PDA or an adult that has PDA?

Sarah: 19:42

Yep. So demands are the everyday tasks that we give our children, that they perceive whether that be a real or perceived demand and that makes their nervous system escalate. So it can be anything, because it's how the nervous system of the individual reacts. So if your child wakes up and you go into their room and say, good morning, let's head downstairs and have breakfast, that child could perceive that that's a demand because they didn't choose to have breakfast. You've told them they have to have breakfast. Therefore you have given them a direct demand.

Sarah: 20:11

I guess there's three main types of demands.

Sarah: 20:13

So direct demand is when you directly give an instruction to somebody, and indirect demand can be things like our internal bodily functions, time expectation, praise, and these sort of things can be, like I said, real or perceived demands for the child, such as the expectation that because they achieved something on a Tuesday, they'll be able to back that up and do the exact same thing on a Wednesday, or that when you praise a PDA child, what they hear can be now I have to do it again tomorrow, but I can't do it tomorrow, and now the demand is the thing that increases their anxiety and therefore they can't move.

Sarah: 20:47

So the other one would be demands within demands, which can be difficult to understand initially. But it's like that beach example I gave, where you say to the kids, like it's so hot, let's go to the beach today, and they start to escalate and don't want to go. But you know that your children love the beach. So it's about for my kids, it's about the knowledge that when I say let's go to the beach, all they think about is mum's going to make us put sun cream on we hate putting sun cream on then she's going to stop us going out far in the ocean and when we get home she's going to make us wash our hair. And those things are demands within demands within demands, and they stop them with those questions. So it's about having children who are emotionally regulated to work through that stuff so they understand what the expectation is.

Dana: 21:27

Yes, but also that I take my hands off the wheel and let them control, within the boundaries of safety, what they can and can't achieve and I'd say even a good morning could be a demand, because then that is like that triggers off a whole sequence of things they need to do right, that's exactly right.

Sarah: 21:43

So the morning ones would be about going downstairs and having breakfast. But the toast is on the wrong side of the toast this morning, mummy, and it's not buttered the way I like, and why is it in squares, not triangles? And then I don't want to wear those clothes to school and then I don't have to go to school. It's thursday. I don't want to go on a thursday because library's on thursday, and then I don't have to go to school. It's Thursday. I don't want to go on a Thursday because library's on Thursday, and then it's the seatbelt feels wrong, and then it's I'm on the wrong side of the car and the demands are ongoing and, like I said, cumulative, and these lead towards an emotionally dysregulated child who's going to hit that trauma response.

Sarah: 22:11

So one of the main learnings I try and help parents understand with PDA is try not to think autism. Try not to think autism. When you keep thinking autism in the PDA space, you'll go down the routine structure pathway of traditional autistic strategies and traits. We really want to move away from that. And whilst PDA is a profile of autism, we want to think about control and choice and this sits in the trauma space that when kids become too dysregulated. Think of PDA like a trauma response. Like if someone for an adult had someone break into their house with a gun, you are going to do something in that straight. You're either going to fight the person, you're either going to run away, you're going to freeze. These are trauma responses that adults have. Our children are having those moments when they become emotionally dysregulated by the demands of everyday life.

Dana: 22:56

And what happens to the nervous system, the neurobiology, when the child is traumatized or when someone is traumatized?

Sarah: 23:03

yep, so I guess um this, like I say, neurobiology. So the rationality you have in your brain that tells you how to calmly work through your problems is switched off, and when you go into a trauma space it's all emotional, which is why, for um I hate this word but behaviors of concern and challenging behaviors we talk about in the schooling space or in the medical space, which is not neuroaffirming language at all but, that's how it's described.

Sarah: 23:28

Those sort of things can occur. So our kids can really struggle with their behaviour, which is actually just their nervous system trying to demonstrate how they feel in their brain. So a child who is hitting or is running away from an adult, this is a child saying I can't cope, please back off. You are making me feel unsafe. And PDA is all about a space where the child is having that trauma response. So they're having feelings of significant unsafety and we need to make sure they can feel safe in their nervous system. So this relational safety we build with our children, whether we be parents or professionals or teachers, this is the importance that keep the child in a space where they can emotionally regulate in our presence, and I love that trauma response.

Dana: 24:11

That's more neurodivergent friendly language. What other neurodivergent friendly language could parents use instead of like challenging behaviors? Or he's violent, or he's manipulative, or he doesn't listen, you know what else could parents be saying? How could they reframe their child's behaviors for themselves? Because I really believe that language is important.

Sarah: 24:34

Yes, absolutely, and I think I always try and encourage parents to meet the needs of their child in the moment. And the language like you say, it's so important and people think it's insignificant. It's not because it's also about how we model that language to our kids. So I try and give the children definitely my own children, encourage others to give them the language that we use with them. So I talk about like what is your choice? Or like I see and make sure we're acknowledging and validating how they're feeling, not labeling their feelings for them. So I talk about like what is your choice? Or like I see and make sure we're acknowledging and validating how they're feeling, not labeling their feelings for them.

Sarah: 25:04

So language around choice, control and safety. And what do you need so that they're having to model back to me and saying I feel unsafe and I'm like, okay, what can we do about that? But I need them to have the language. I need the kids to have the language to know what to say, opposed to punching me or running away from me. I need my children to be able to come to me and say I'm unhappy about this or I feel unsafe because you did this and that's fantastic and that's always celebrated when they can articulate what's going on. And people can only articulate how they feel when they are not in that trauma space. So when we have kids who are having these trauma responses, they haven't got the capacity in those moments to articulate what they feel, because in a trauma response, like I said, the rationality is switched off. It's all emotional. Their actions are their words and we have to view them as that it's like a panic attack almost yeah.

Sarah: 25:54

So it's an anxiety driven disorder. So it's all about the anxiety they feel, which can be be crippling, and it's terrible to watch children go through this, especially when we have the skills to change it for them. It's the systems around society, whether it be education system, health system, how society runs as an as a system, that blocks this for our children, and we really need to work hard to encourage parents to see it from a different point of view and and what about medication?

Dana: 26:22

Do parents go down that path or what's going on in that with medication in the PDA space?

Sarah: 26:28

Yeah, absolutely so. It's definitely something that is discussed in accordance with a PDA affirming pediatrician, and medication is absolutely one avenue that parents can go down, which most likely looks like an anti-anxiety. But it's really important parents understand that medication alone is not going to fix your child. It is not about fixing anything. We fully celebrate the neurodivergence within our children. I need parents to see the realities of this wonderful situation and embrace it and you will have a much happier child and a much happier family life. And there's a lot of environmental work that needs to happen first before we just jam medication into our kids and think it's going to fix anything.

Sarah: 27:07

But yes, I think both environmental factors and medication can work hand in hand beautifully and my pediatricians will tell you the same. They will not medicate your child without the environmental factors being looked at for other reasons why things are going on and our parenting style and our change, like I said, about how we're viewed in society. That's the stuff that needs to change before we put medication in our kids. But yes, there has been a lot of success with things like floxetine as one medication that I know a lot of PDA families utilize, and that's wonderful, also remembering that a lot of autistic children have ADHD. So they say the stats are about 50%. I'd say that's probably more like 100%. I agree. So most kids or some kids I should say not most will be medicated for ADHD as well. So then you need to work with a paediatrician to see how to cross-medicate for multiple diagnoses.

Dana: 28:03

And I just find it really interesting about when we're talking about parents and PDA kids and parents possibly having PDA, and I think I may have met clients who where the parents have PDA but don't know that because they really want to control and they want to control their child and then it becomes like a family control issue because the child is uncontrollable. The parent wants to control the child the way they want to control the child. Have you had family systems like that?

Sarah: 28:34

Yes, so that's my whole bread and butter and I guess I came from a family like that. I was that parent, I was a traditional parent. I had kids who were extremely compliant and I had twins. So obviously, you know, I was told initially, put them on the same schedule, put them on the same routine, that's how you survive the twin world. And I was like that makes complete sense to me and I did it and my ex husband and I were successful in that and we had a beautiful couple of first couple of years with our twins where everything was flowing beautifully until things started to shift and he shifted a lot quicker than I did in his calmness.

Sarah: 29:04

I wanted to be more controlling, because that's who I was more naturally, and it took a bit of time to understand what we needed to provide for our children to meet their needs. And then, now that we know how to do that because we actually found some research and education and we found people like myself to help us then we knew what we were doing. But absolutely, I come across lots of parents knowing that autism is genetic and PDA is a profile of autism. There is a lot of parents I meet with who they have undiagnosed autism or undiagnosed autism, pda or ADHD, let's say and I am happy to have those conversations when I feel it's appropriate with parents, and I don't think there's anything wrong with that People often ask me you know, should I tell the parent I think they're autistic?

Sarah: 29:43

And the answer is always yes, because we shouldn't be scared or shamed that we are neurodivergent. We should celebrate that and people will often not be able to see the link between why they are that controlling parent and when you point it out to them, people I have had, most people be very happy to hear this information. Then I can support people in that journey and talk about my journey with them, and that lived experience is why the business is successful Absolutely Because I have myself as a neurodivergent woman and all the staff I hire are neurodivergent with neurodivergent children, so that they understand exactly what's going on, opposed to people who don't.

Dana: 30:19

No, and what about? So what if the parent is still not there? Doesn't really hasn't got that reflective capacity to reflect on their neurodivergency.

Sarah: 30:35

Yep. So that's okay and everyone's on their own journey and that's going to be validated too. So it's not my job to push anybody into that diagnosis and it's encouraging. So I would say this is what I. If they ask me, I'll say what I think and I can refer them to an appropriately PDA affirming or neuro affirming specialist to get that diagnosis. We can talk about self diagnosis, which some people are more than happy to do, but my experience has actually shown me that people actually are more willing to talk about it, because if they're on the journey with their children and I tell them that autism is genetic, then they can make the links themselves and it starts to make people reflect on they think that their parents may be neurodivergent and their grandparents are neurodivergent, yes.

Sarah: 31:11

And then the shame is gone. People are scared because of what autism looked like. You know 50 years ago, when we saw you know little boys in the corner males only you know eating glue lining ago, when we saw you know little boys in the corner males only you know eating glue lining up trucks, and people thought you couldn't have a life. Now we know so much more. We know that neurodivergence can be celebrated. Some of the smartest people in the world all neurodivergent, yes.

Sarah: 31:33

And then people are always very surprised when I tell them that I have autism, pda, and people say but you're so high functioning. Then I talk about the term high functioning with them and which I don't like that term either Um, because it's not about me being high functioning. It's a spectrum for a reason that at any given day I can be high on that spectrum or low on that spectrum and we don't want to differentiate. We are all neurodivergent if you're sitting in that space and that should be celebrated. People shouldn't be scared of that. But I understand why they are, because there is a lot of shame and guilt around it still, but we're trying to change that.

Dana: 32:05

And what about different cultures? Have you worked with families from different cultural backgrounds?

Sarah: 32:10

I have. So I've got some beautiful First Nations families which I love supporting, especially in the social work space, because obviously it's complicated and also obviously culturally. I've got some beautiful Middle Eastern families now, which is lovely. And to work in a space where traditionally these things were not celebrated and are still not so, yes, it can be challenging, but we have support teams for a reason that understand this.

Sarah: 32:35

And even just yesterday I had a beautiful Afghani family that I worked with and they were so happy to hear the information they were very honest that this information would not be celebrated across some of their family, but one step at a time. So I need the parents to understand what the information is to support their son and then how we go forward from that point. So that's what social work is. So I'm more than happy to engage that space with them, and it's lovely to be able to support people from varied cultures, and I love supporting our First Nations families because people want the information, regardless of their culture. This is information that, sadly, is really hard to come by, so it's really lovely to be able to provide it.

Dana: 33:13

How many PDA affirming GPs, pediatricians, are there in South Australia, australia? Is it a handful? Is it a bucket full?

Sarah: 33:27

Where are we at with that. So the PDA Australia has a section on their website that has a list of everybody who lists themselves as PDA affirming. So that's PDA Australia, pda Australia. So Australia and New Zealand, sorry. Okay, now that list means you can add yourself to that list without anyone verifying anything.

Sarah: 33:46

And sadly, some people who I've given that list to have said I rang that person, they didn't have a clue what they were talking about. So now when I refer people, I have already done the background work for you that knows other families have seen the person specifically and give me exact details. Or I ring the professional to make sure they know enough about PDA in this space that I would refer a family to them in South Australia that looks like two pediatrician organizations, which is sad. One of them is a very large organization, which is great, but I refer so many families to them I think they're getting overwhelmed. Um, but gps, it's very hit and miss um, sadly um, because it's just not something that's educated on. So it's such a new space.

Sarah: 34:27

Obviously this only was first documented in 2003 in the uk. Um, even though the concept was um, she came up with it in 1983 and that's dr elizabeth newson. She only wrote about it in 2003. That was only 20 years ago, so we need to remember that autism's been around for over 100 years. We can't expect PDA to spread, but people should be excited because it is spreading like absolute wildfire the information. So we are getting more PDA affirming allied health professionals and medical professionals. I'm more interested in having OT speeches and psychs across this information, which is why we also do a lot of professional development in that space and also I'm hoping that more and more schools start to embrace PDA and understand that it's not a behaviour Does that make sense Absolutely and I do a lot of school training, whether it be advocacy with the family in the schooling space, and that can be charged either from the schooling perspective or through the child's NDIS plan if it's child specific.

Sarah: 35:28

So I am fortunate to do a lot of school training for individual teachers and for largest teaching cohorts. I've also done some work with the if you're from South Australia, the autism inclusion teachers, the leadership team of that group. I did some PDA presenting to them and I've also later in the year presenting to the Australian Teachers Aid Association.

Sarah: 35:50

I'm doing some webinars for them. That's great, which is wonderful. Just to spread that information as quick as we can, because obviously the micro work you do one-on-one with families is brilliant and I wouldn't give it up for anything, because obviously the micro work you do one-on-one with families is brilliant and I wouldn't give it up for anything. However, the macro work we can do at a larger scale to spread the information is what we need. We need literature about PDA in Australia, which we don't have, which is also why I'm starting a PhD in the PDA space. But also that macro work to present to larger cohorts to make sure the information is varied, not just through one organisation.

Dana: 36:20

larger cohorts to make sure the information is varied, not just through one organization. So let's just talk about the name PDA pathological demand avoidance. Why pathological? What's with?

Sarah: 36:29

that word? Yeah, so it was coined by Dr Elizabeth Newsom, like I said, in the UK. She wrote about it in 2003. She was a clinical psychologist, so it's not surprising it's named that because it's a medicalised term. A lot of people have trouble with the term pathological because it's medicalised, and I understand that completely, which is why in America it's more referred to as extreme demand avoidance. I don't like that one either, because extreme indicates that's where all the whole PDA community sits, and that's not true. So persistent drive for autonomy is what a lot of people in the PDA community like to refer it to, or I like to refer to it as pretty darn awesome.

Dana: 37:07

Great, I love that Pretty darn awesome. I love that. That's what we're going to refer it to. So you are very empowered, sarah. How did you become like who you are? You know? You said that you, you know you had your twins. You studied social work. Like what made you think, okay, I am, I'm Sarah and I'm pretty darn awesome.

Sarah: 37:34

I guess I am very driven by learning, like I said earlier, so I always want to know what I don't know, and this has done my life wonders, because being diagnosed with something I didn't know, so now I know plenty. And helping families, whether it be as a paramedic or now as a social worker, I get to learn more and more each day from people, and learning from people in how they live and what they've experienced is how you learn. Whilst I adore studying that's a piece of paper in a book live, and what they've experienced is how you learn. Whilst I adore studying. That's a piece of paper in a book telling me what something is and my reflection on it.

Sarah: 38:11

I love being able to learn from people in communities and that lived experience is so important to me. So I guess I'm empowered by those around me who are trying. I don't need people to come to me with all the answers. I need people to want to be open-minded, to learn something, and that's all. You need to be empowered. So I think I definitely am the person who understands that you can't empower somebody else. You can only walk next to them and they will become empowered. They are ready for that journey and I think I've had to learn that for myself and because of that learning I'm now able to share that with other people.

Dana: 38:40

I've had to learn that for myself and because of that learning, I'm now able to share that with other people. And what about mental health for yourself? Physical health for yourself? What do you do in that space?

Sarah: 38:47

Yeah. So I guess the work-life balance is definitely something I've never been able to achieve. I'm very aware that I don't have it, and I do talk to a lot of parents about that, because all of us who are parents know parenting is really challenging's one. It's the hardest job, by an absolute mile, that you'll ever do. Um, is parenting neurodivergent children more difficult? I would say no, there are challenges of all parenting, but it's not the parenting of the neurodivergent children that's difficult. It's the lack of information and support that is difficult. And once you've got that and you're on the right path, then then it's just difficult, like all the other parents who are exhausted out there. So what path do I take?

Sarah: 39:22

I love sport, so when I can, I try and be fit. So I go to the gym with my partner and I will exercise and I will walk and I will go to the beach, and I love being outdoors, mental health-wise, I think, whilst a lot of people say you need a break from work, work is really empowering for me. So I love working, but I know when I've reached my limit and it can be difficult starting a business where the business is built around what's in my brain. So I have to find ways to help other people learn that information so I can help as many people as I can. But, yeah, it is important to take breaks and to have time off, but spending time with the kids and holidaying and doing things that you can do in that mental health space is really important.

Sarah: 40:04

And it's naive of professionals to say to parents to make sure you have self-care and take care of yourself, without any context around what that looks like, especially for those of us who had children in burnout or who are facing challenging times. So there are times when I didn't leave my house for six months because my son couldn't leave the house and he wouldn't leave me, and yes, it's challenging. And did I have self-care then? No, I didn't, but I also had the realistic notion that it doesn't last forever and that I needed to give him what he needed in that moment. So we need to make sure, when we're talking about self-care, that we know that, yes, it can look different for everybody, but that we don't set too high an expectation on what we can achieve based on what our kids are going through.

Dana: 40:46

And I think that self-care if you ask, you know in the home and your child's going through burnout, then it might be just three breaths.

Sarah: 40:56

Yes, and I used to run up and down the stairs, I used to feed him and and sit next to him. So when he asked for food or when I would get him food every hour to make sure he was still growing, then I would run up and down the stairs and in my house and I would try. I didn't really have much capacity to talk to people outside of the family at that time because it was so stressful for me, Um, but you know, a morning shower, I could wash my hair and I think, oh, thank goodness, I have clean hair today.

Dana: 41:20

That's huge. And I think it's about being mindful that you are doing it for yourself. It's not about when you have your shower. If you can, if nobody's calling your name out, you know through the house if you have a shower, be in the moment. If you're washing your hair, say, wow, nine days I've washed my hair, that's great.

Sarah: 41:40

Right, absolutely, absolutely. Couldn't agree more. And as a PDA, I think I really struggled because I was undiagnosed that time to understand that I was losing control. The reason I struggled was because I was losing control of a situation that I didn't understand why I was losing that control. But it was about those small wins, about having the capacity, the emotional capacity, to step forward in a part of the day and be like I've got this. I'm going to walk around the backyard or I'm going to, you know, do some gardening, or I'm going to cook a new meal tonight for the family or pick up my daughter.

Dana: 42:08

Or just do nothing on the couch. Just do nothing, if that's possible. My brain is not allowing me to do nothing. My brain is always moving.

Sarah: 42:15

But you know, when I could study, I would study, but being kind to yourself, I think that was what I learnt more in that time that I lost the ability a lot to study and to work and to do much else, because my emotional capacity tanked, because I ended up in a burnout space, a trauma space, just like my son did. And that's okay and you know, I didn't understand at the time. It was very difficult but on reflection on it I know why. I was there, based on my undiagnosis, based on what was going on for him, and what I needed in that time was to be kind to myself, not continue to push myself when I didn't have the capacity.

Dana: 42:50

So talk to me a little bit. You said you did mention the burnout earlier on and you said you're going to talk about it later. What you know what led to that? How did you come out of it, both of you?

Sarah: 43:01

So PDA burnout is when a child hits that trauma state and can't get out of that trauma state. So, sadly, the main reason this happens to our kids is from school and when they end up in a space where they're begging their parents not to go to school and having significant behaviours to do anything to avoid school as in that everyday avoidance then behaviors to do anything to avoid school, as in that everyday avoidance then our kids will end up in a space where they're not at school and most likely in PDA burnout. So they will spend however long that lasts weeks, months, hopefully not years in a space where they will have very little emotional capacity to do the day-to-day things. So a lot of the time it looks like kids consistently gaming and withdrawing into that fantasy space as a way of processing what is going on and then coming back into the world when they're ready to do so.

Sarah: 43:46

The way I coped was I didn't. I got to a point where I was so burnt out, like my son, that I had to give up everything because I wasn't coping anymore. And only then did he start to improve because I went into low-demand parenting which at the time, not knowing what that was, it was a space where he had full control. When he had full control he started to improve. So his burnout lasted about five to six months and he started to improve. Like all parents, we watch our kids be happy.

Sarah: 44:12

I started to improve and then we started to understand. We finally had someone who understood PDA even in the smallest sense, and that's when I started to learn more about PDA. But that's when the business idea came. So the business idea started to thrive and I thought this is how I can help other people. And it was almost immediate after that point and I had a new drive forward and a new passion that I was completely fixed because I was able to regain control. So on reflection, and when you asked me about moments that I thought, how did I know I was a PDA-er? There's another example because as soon as I had a direction and a passion forward, everything was fixed in the moment.

Dana: 44:49

And you didn't have to use that control on your kids, but you used it in your career Correct.

Sarah: 44:56

So I continued to focus and control on myself about things that in my own world that I can control, and let my children control their own spaces. And then I really started to learn about what choice and control was and people understand think they understand what choice and control is. But to truly let go and let your child you have full choice and control within the boundaries of safety, and watch them thrive and believe in that process. It's scary but it works and families that I've watched do it. It works time and time again. It's just when they're ready to engage that space.

Dana: 45:26

So how do you give choice and control if something's unsafe?

Sarah: 45:30

You don't. So you work with your child. So an emotionally regulated child will be able to have, hopefully, a conversation about that. So things like my son likes to tell me that he likes to jump off the roof, which he has never done. But I'll say something like I can't say we can't jump off the roof because that's a direct demand, and he'll go and try and do it. But I can say something like oh, but if you jump on the roof, won't you hurt your legs? Because it's 10 meters, buddy, and you know you might break your legs and that could be super scary for you, because I'm not talking about me in that moment, I'm talking about him.

Sarah: 45:59

I'm getting giving him context to get him to reflect on the information. So because I have regulated children, I can have those conversations. When I didn't have regulated children, yes, I absolutely need to make sure they can stay safe, and if that means I need to be more in a space where I can make sure, like physically they can remain safe, then that's what I did. But that doesn't build relational safety with them. That actually breaks it down. So it is important to emotionally regulate your kids as a priority and only then can you start having those deeper conversations in those context times to keep them safe.

Dana: 46:32

Just for my own information. So you said that even when you're sitting on a couch, sarah, that there's a lot of thoughts going through your mind. So does that mean people who have a lot of thoughts going through their mind can't meditate or learn meditation or anything like that?

Sarah: 46:49

No, not at all. I have a lot of parents who are very much in that space and love meditation. I am not that person, so, as a hyperactive ADHD, I would much rather be on the move and meditation is definitely not the thing for me. Running up and down stairs. Absolutely running down stairs and coming up with business ideas and always thinking forward about travel, and my mind likes to move in different circles and I guess that's okay, which is why I don't like the traditional models of self-care.

Sarah: 47:16

We should like meditation and we need to slow down. I don't need to slow down to be calm. If I want to move fast, then that's fine for me, because I can move twice the pace of some other people and still be completely regulated and calm, and I have enough self-reflection. I know when it's too fast and that I am pushing myself too hard, because I have physical symptoms that demonstrates this to me. So you know, in the PDA space, I guess I love the what I've learned about reflective practice, because that's actually the thing we should be encouraging. The more you understand yourself, the more you want. You know yourself so well that you will make strong decisions that are best for you based on how your body's feeling and how your mind's feeling.

Sarah: 47:55

Absolutely, and the two are linked body's feeling and how your mind's feeling. I agree, and the two are linked.

Dana: 47:58

Great, I agree, absolutely Okay. So, wrapping up, what would be three things you could suggest to parents, sarah, who are listening, to be able to live their best?

Sarah: 48:12

lives and be the best parents they can be for their children. I guess, firstly, you have to trust yourself. So you know there's so much information out there. Social media has worsened this in a lot of ways for people. So please trust your gut, trust yourself and it's okay if you make mistakes, because mistakes is how we learn and we should be encouraging this for our kids as well that they aren't alone.

Sarah: 48:30

People aren't alone, even though you feel very isolated in moments like this, and I validate that for you because I have been isolated in this space.

Sarah: 48:38

But to find your people and finding your people doesn't necessarily mean your current friends and family.

Sarah: 48:43

That can be what people think that they should have unsolicited love from their current friends and family.

Sarah: 48:49

But sadly, a lot of the times when we have children that are perceived to be different or we have family that don't understand our kids, that we have a lot of judgment and guilt there and that can be really hard. So find your people who do understand, and being part of neurodivergent groups and celebrating neurodivergence for what it is is really exciting. And most importantly, I'd say forget what you know, what you think you know, and you have to embrace what you don't know, because this is actually how you're going to find yourself and how you're going to help your children the most. And people who come to me ready for that journey are easily the ones who do the best straight away, because they are absolutely ready to be taught something that you know societally tells them is wrong, but that they're ready to try an alternative method. And I'm not telling you you have to do it, I'm presenting an alternative, and you, as parents, still have control for what you do with your children. But yeah, you have to be willing to look another way.

Dana: 49:42

Yeah, and I think parents get really scared of the NDIS and the goals and they have to see a speech pathologist, they have to see the OT, they have to do this, they have to do that. But I think you know, you are definitely right. Parents need to follow their gut feeling and it's not the medical model that we are promoting. Well, I'm not promoting the medical model.

Dana: 50:03

Um, it's the social model. So it's really looking at what are the needs of the child, what are the needs of the parent and who, who are the people that are going to be best in this space to help them. So if the child's not talking, I don't say you have to see a speech pathologist. It it might be a play person, it might be a support worker, because it's going to be the relationship that brings that out right?

Sarah: 50:24

Yes, exactly so. It's the relational safety the child or the person feels in those moments. So if the child's not ready for therapy, don't push them into therapy. Sadly, a lot of the autistic reports we read say once you get diagnosed, it's speech, psych ot immediately. That's really sad and and a lot of parents always ask me what do I think? And nearly always the answer is like a lot of our pda kids don't really need a lot of therapies. You're talking about highly intelligent children who are highly dysregulated until you change your parenting style. Once you change your parenting style and you go low demand, then have a look and if your child needs something you'll know what it is and you'll go forward in that space. But you also need to find the right person. Putting any allied health professional with them is going to actually traumatise them. You must find someone who is PDA-affirming.

Dana: 51:09

And also I think, like in our space, we've got play therapists and early childhood educator and often they are the best people because they're just all about the play and they come for the play. Yep, and often we say they don't need speech and OT. Speech and OT are the last on the list.

Sarah: 51:25

That's right, and play obviously gives the children more choice in those moments, which is why it works. So the children are seeking choice and control. They're seeking that safety, and we need to find ways to give it to them.

Dana: 51:35

So, sarah, very last question what has been the highlight of your life so far of being your children's parent and a business owner of the amazing PDA Kids?

Sarah: 51:52

our PDA Kids. I guess as a parent, I love seeing the little things. So my son is highly witty. He is such a smart kid. I love seeing how quick his mind is. He's just hilarious and I guess I love that from the perspective of people think that autistic people are so dry and can't be funny. But my son is so funny and I love watching his brain work For my daughter. She is highly creative and is years above her age in the care she has in the social justice space and her equality for people. So I love watching how they have designed this stuff for themselves. They are pushing their own direction forward and they're going to be these great kids and adults and I just get to be part of that journey and I love supporting that journey, knowing that I'm not driving any agenda for them. They are driving their own agenda and what a privilege that is as a parent to know that it's not my responsibility. That's on on them and I support the direction they take.

Sarah: 52:40

As a business owner, I just I guess I love what I do.

Sarah: 52:42

I love being able to support people, given a lot of people who see me are women and mums. I love being able to support women, because I find that society has let us down so much and I really want to be able to support women to empower themselves. Like I said, I don't empower other people. They empower themselves through lived experience and through conversations with other women that show them that they have all the skills to do this, and I'm more than happy to support that journey for them, opposed to fix that journey for them. So, like we spoke about changing that language and showing them an alternative way and saying that it's okay, and validating the experiences they've had, which a lot of people will not do. So I think that validation is really important and being able to shift that parental structure and that societal structure, the education structure of systems that are not supporting us, and how we can do that so differently, and I guess that love for helping others in a way that they need, not the way that they should need, is why I drive this forward.

Dana: 53:38

So, Sarah, what's your waiting list?

Sarah: 53:41

So my waiting list is increasing but I have some wonderful staff with another one coming on board shortly who, like I said, are all neuroaffirming, all neurodivergent, with neurodivergent children, sitting currently at 8 to 12 weeks. I also have a built-in webinar, so once you hit my waitlist you can access my webinar series, which is a four-week series. I'm hitting all the main topics in the PDA space that are the generic topics that parents always want to know about, which is behaviors and school screen use, as well as a live Q&A with me where you can ask me anything. So I guess that's open to all of my waitlisted families and a lot of people really love having some immediate information until you can get one-on-one service. But eight to 12 weeks in the therapeutic space is good and it gives people, like I said, a starting point before they can move into that one-on-one space. I love it.

Dana: 54:32

Sarah love it. Thank you so much for coming on today and I'm sure the listeners would agree it's been an amazing, amazing session of information around the PDA space and what the PDA profile is and isn't. I would love if parents write in questions or if there's like frequently asked questions. That would be great to have another session around that, because I know there's not enough information around PDA in our community and it's definitely an area that's growing and growing and people want to learn more. So thank you so much.

Sarah: 55:11

No worries. Thank you so much for having me. For those seeking more information, jump on my website. There is a resources page that has books that are PDA affirming. There is a research page that has academic literature. If you're more inclined that way, professionals or parents, so jump on, have a look so you can get more information. And thank you so much, Dana, for having me. It's been a wonder to talk about PDA.

Dana: 55:31

Okay, thank you very much and thanks for listening.