Autism Spectrum & PDA Parenting: Supporting Sensory Needs, Safety, and Wellbeing through OT (Occupational Therapy)

Chantal Hewitt (00:00)Within this episode, we will look at how to support your PDA child in a neurodiversity affirming way through pediatric occupational therapy. We will learn some tips and tricks of how to begin with the foundations to support your relationship with your child, to co-regulate with them, and to really understand the impact of what that foundation has for your child's success and then their wellbeing moving forward. Hello everyone. Welcome back to the Attuned Spectrum podcast. I'm Chantal Hewitt, your host. Today we have a super exciting special guest for you. Please welcome Rachel Gebers Hi Rachel. Rachel (01:16) Hi, thank you. It's so nice to be here. And I'm Rachel. I'm a pediatric occupational therapist. am South African, currently living in London in private practice and yeah, excited to be here. Chantal Hewitt (01:28) Cool, thanks so much. And for the people who are listening, one of the reasons that I reached out to Rachel is because within the work that I do with families and within my work with my own son and the other children that I support who are autistic, PDA, neurodivergent. One of the biggest supports that I see that not many people are aware of or have access to is occupational therapy or pediatric OT from quite a young age. I'm filming and speaking to you from New Zealand, Rachel's in the UK. So this obviously will be different where you are placed within the world. But for the majority of the families that I work with globally, the same themes come up. And for me and for them, it is access to occupational therapy supports for our young autistic children or young neurodivergent children. And I think so many parents don't understand that that is the foundation and that is where we start or would be really beneficial to start when you're navigating an autism diagnosis or trying to figure out how to support your child in their emotional regulation, in their sensory integration needs. So many things come up. And Rachel, I'm just curious, have you experienced any of this? What is your experience working with the young, wonderful children and families that you work with in London? Rachel (02:53) so when families come to me, a lot of them really don't know where to start. They have generally speaking, and I work in specialist education in a little sort of a preschool, three to five years. And a lot of the families, just, they have no idea what occupational therapy is. It might be the first time they kind of come across the diagnosis of autism. So they really don't know where to start, but I love working with those families because I'm like, let's go from the beginning and really help you understand your child and your child's differences. And I feel like really privileged to be able to be a part of that initial journey because you can lay the foundation for reframing what autism is and that it doesn't have to be so stigmatized. It's just a different way of seeing and viewing the world. So I love being there for the start of it and especially just working with. honestly really, really anxious parents. It's sort of where my heart is at and why I've chosen to work mostly within early years. But yeah. Chantal Hewitt (03:49) that's great. Thanks for sharing. that I'd love to discuss what your mission is or what your vision is, your hope. And that almost, I think, just kind of layers really nicely with what you've just said, if you'd love to share. Rachel (04:01) Of course. ⁓ I mean, when I started out as an occupational therapist, I knew I always wanted to be working with children. And I think my heart has always been drawn towards children with complex bodies, complex nervous systems, and the children that are kind of the most vulnerable and at most risk of being excluded from society, just because our systems are just not supporting them and their families. and I guess my mission is to help these children or be a part of supporting these kids to feel included and to feel connected to their families and to friends and to have really beautiful, meaningful, joyful experiences with life. And then also just to try and disrupt and influence the policies surrounding these kids and their families and really making more positive change in the systems that are actually really impacting on these kids' health and livelihoods. Chantal Hewitt (04:50) That's awesome. And if you don't hear it enough, I hope you do. And I'm sure you do, but your work is so valued and it does make such an amazing difference when we look at the wraparound support that we can offer to our neurodivergent children, our autistic children are. And it also doesn't just like when we talk about autistic children and their journey and how much support they need. think a lot of the time. Rachel (04:57) Thank you. Chantal Hewitt (05:15) And this is the work that I do as well. And I know this will be where the conversation heads, which is amazing. How much of the work is actually involved in the parent understanding that they are a part of that foundation. And I know in your practice and I can see you there nodding along as well that that foundation. maybe is it just not understood how impactful the parents nervous system state is or understanding their own nervous system, their own sensory needs, sensory differences. I know you speak a lot about dyads and triads, which may actually be new words to the listeners here. So I think that would be awesome to unpack how you see the foundations or how you see what the biggest impact is. for young autistic children in your care that you work with. Rachel (06:05) Yeah, it's such a beautiful question. And that's sort of, guess, the nutshell of neurodiversity farming work and working with a child's nervous system, which is where we need to be moving towards. And without putting too much pressure on parents, because I know there are already so much pressure to kind of get it right. unfortunately, or fortunately, the parents nervous system has a really huge impact on the child. nervous system. We speak about the word attunement. in DIR floor time, but just generally I feel like it's becoming a lot more of a known word of being attuned to where your child is at, what they're needing physiologically, what they're needing in their nervous system and being able to provide that and being able to constantly co-regulate for your child so that they can feel grounded, safe, secure. And from that beautiful space and be able to... know, develop and to experience the world without stress, which is huge for autistic children because, you know, if we think about their sensory world, it can be radio overwhelming and radio overstimulating. That's a lot for them to take on all the time. And if the parent is such an integral part of grounding that child and supporting that kid to be able to feel safe. And I guess that comes to your point about the dyads and triads. in DIR full time, we speak about the dyad, is your relationship with one other person. So I could be in a dyad with a parent, or I could be in a dyad with a child. A triad is with three people. So in my work, it would be with the parent, the child, and myself, because that's how I work. I try and avoid just working with the child. I always want to have the parent day. So we speak about goodness of fit and the goodness of fit in the dyad and the triad is essentially about understanding your own individual differences. And when I speak about individual differences, I'm speaking about my own sensory processing, my own motor skills, the way that I communicate, the way that I take on feedback, the way that people speak to me and how I process that, the way I discipline, all of these are on my own individual differences. And obviously when we come into relationship with a child and a parent, they're coming with their individual differences as well. And the goodness of fit is around how do my individual differences align with this child's? And that it's about in relationship, how can I change myself or adapt how I am and how I come across to this child to make sure there is a good goodness of fit? So for instance, I might be, I might speak really, really quickly. And I do when I'm anxious, but I'm trying really hard to slow down my speech right now. but I could speak really quickly. And for a child who's got auditory processing differences, that's going to be really challenging for them. They're going to feel overwhelmed and that's going to impact or rupture our relationship and our interaction. If I move too fast for a child who struggles with visual processing, if I am too loud for a child who's auditory sensitive, all of these things about just who I am as a person and just my individual differences, how am I even be coming across on that day in my own regulated state? is gonna be impacting on this kid. Obviously that's a lot of pressure to hold 24 seven as a parent, but this is my job. So I have to do it. I have to do it for each child. But it's all about. Chantal Hewitt (09:25) Yes. And we need you, by the way, we need that when we, because I don't know about other parents, but when I go into an occupational therapy session, I sit, I try my best to just have a break. Because it is, it's, yeah, I don't know, just, just parent, just jumping in there. But yeah, it is, it is nice, I guess, to feel that connection with the person that is working with your child, see that they're safe. And, and yeah, just. Rachel (09:43) Yeah, yeah. Chantal Hewitt (09:51) Also, you guys model so much. I'm not sure if you realized appearance, whether you mean to or not, but when we're in that space, it allows us to kind of take some deep breaths and to regulate and to go, that's how I can do it next time. And I guess you are only with the child for a certain amount of time, so it might be a bit easier, but yeah. Rachel (10:03) Yeah. Yeah. Yeah, it is because I mean, obviously, it's you having to constantly change up according to each child's individual differences is coming in and one child is going to be so different to another child. But yeah, absolutely. And sometimes if I come out of a session and I'm feeling quite upregulated, I've actually had a parent who's she's a psychotherapist. She's actually told me, do you want to just take five minutes? Chantal Hewitt (10:16) . Rachel (10:33) before you work with my kid. like, do know what? I actually do need that. We're constantly feeding off each other's energy states. And again, I guess that brings me to working with parents. It's like, do you have a ⁓ good goodness of fit with your therapist that you're working with, with this practitioner with your child? Because the work that we do, the work that any therapist is doing with your child, it's deeply personal. I mean, Chantal Hewitt (10:37) Do. Rachel (10:58) This is your kid. And it is so important that you are aligned with the practitioner and it's so okay for you on a personal note to be like, do you know what? just isn't, this isn't the vibe feels of. Because I, and I say that to parents. I'm like, you you're going to see me more than you see some of your friends. Like I see my kids and their parents more than I see my own friends. it's important to make sure that you get on with each other. And then we come to the triad, which is obviously me working with the parent, the parent working with the child, and all of those different dynamics together. So it's a constant flow, and we talk about it as a dance. It's literally like the dance between each other's individual differences and how you make that beautiful connection together. Chantal Hewitt (11:48) That's great. Thank you. Okay, so now I think it would be an awesome time to discuss a mindset shift, which I believe will be so helpful for parents, whether they're just starting their autism support journey with their child, maybe they have been in the thick of it for quite some time and they're trying to find other strategies, other ways to support their child. The reason why I am such a huge fan of occupational therapy, and I know some people, they've tried it, but they feel like something quick should happen right away. And that's actually from where I'm standing. Obviously I'm not Rachel. Rachel is the expert OT here. But it doesn't work like that. The whole good things take time and what you're actually doing within those sessions, if we look at what Rachel has said of really establishing that relationship, that diad whether that's OT therapist or occupational therapist to the child or the parent to the child, those things are such a foundational component. And if we rush them, we may not get to the goals that we want to. So the shift here to think of if you are stuck in this place, I wonder if you can see if you can shift your thinking to this is a long game. It is not one or two sessions. It is a series of supports. is ongoing. Personally, my son has been in occupational therapy for, I think coming up to three years now. We've taken a couple little breaks here, but I genuinely notice the effects of what happened when we have taken weeks off at a time. So right now we're actually, because of the school holidays, they've just ended in New Zealand. So. Yeah, it's been about six to eight weeks since my son has been there and we had to throw in so many other supports in place during the holidays, but I definitely can see the emotional regulation has been not as supported. I think it's, I don't want to say it's an invisible support because when you were there watching and it's not invisible, but it is so intentional and that work over time, I feel really builds up and yeah, so it Can we look at it perhaps as a parent as we need to slow down before we can speed up, before we can reach all those goals, even forget milestones, what is happening right now actually will not be sustainable moving forward if we don't address the foundations and those relationships and how important they are, that connection with your child. And I think too, if we look at the family system and how the foundation of the parent, how they understand themselves, how they then support their child and then support their child in their interactions and within their home, within their family life, how that extends onto school. There are so many things that kind of happen outside of the occupational therapy setting. And I think as parents, we may always want to just jump to They will be successful. They will be toileting by this age. They will ride a bike. will, yep, like do all those things. But have we gone back to the basics and do we understand the basics? Yeah. I'm just trying to think if I've got an actual question for you there, Rachel, if there's anything that you, I don't know, want to add maybe from your perspective that could be helpful or what you say. Yeah. Rachel (15:00) Yeah. No, I've just been on the line. I think you've just been saying it so beautifully. I mean, the phrase that I've picked up from, from Maud Laroux, who's an incredible occupational therapist is going slow to go fast. And, you know, in this very, very fast paced world, Chantal Hewitt (15:15) Thank you. Rachel (15:29) with very much, it's very much instant gratification, right? And that's how we are as humans now. And as adults, we, if we want something tomorrow, if you've got Amazon Prime, you know, you're able to get it the next day, like there's no more waiting. Everything's fast paced. Work is fast paced. If you live in a city, the city's fast paced. You everything just feels fast. But the thing is the human body hasn't caught up. that we're still the same human body that's been around for tens of thousands of years. We're still looking at development hasn't changed. We're still looking at similar milestones to however many tens of thousands of years ago. And so it's not quick. And it's hard because obviously parents will come to me and also therapy is expensive if you're not able to, if you don't have great public health care, most parents are having to access private therapy. And so you kind of want to be like, okay, six sessions, that'll be good. Like that's what we can afford. And it's, really tough because you kind of want to say, it, don't know how long it's going to take. We don't know what your, your own child's individual differences and your way your child's nervous system is that. And when I have these kiddos coming in and you know, say they're coming in and they're in school and they're really struggling with writing and they're struggling with hearing the teacher and maybe they've, they're now wanting to leave the classroom a lot. Maybe they're having a emotional outburst. Maybe they're just having a really tricky time at school. They're all of these things that the parent and that maybe the teacher's looking at and the teacher is saying, the child's not sitting down. They're not writing. They're falling behind in maths and... the parents coming here with already with a list of problems of things that they want to change. And I'm having to be like, well, we're looking, if we're looking at a house, writing, you know, sitting down to listen to a teacher, being able to tie your shoelaces, this is the roof of the house. And as an OT, usually what happens is that I have to go all the way back down to the cement foundations and have a look. That's usually where I like to say like the bricks are shaky. It's the foundation. And that's obviously, if you've got a shaky foundation, it's going to be impacting on the roof. And that's why the work takes a while because you're looking at nervous system foundation. You're looking at safety, looking at sensory processing, the central nervous system, getting your sensory systems online and communicating and getting that nervous system to experience more safety. you're doing that through relationship, which also takes a long time, especially if you're working with neurodiversion kids, because you can't go anywhere without relationship. yeah, we have to go slow to go fast. But once we have that foundation going, it's beautiful because you can really see the bricks just start falling into place. And you will automatically start seeing things at that level of the roof. start coming into place again, but that's because you actually worked on the foundation. I didn't work on the child's handwriting. I was just playing with a kid and helping them feel safe and experience calm or nervous system safety in a different environment with a different adult. Like that is the work. which is why I think a lot of, if you, if your OT looks like play, or if you think that your OT is just playing with your child, but your child comes out of that session happier and a bit more regulated, there was a lot of work that was going on there. for that child's nervous system. Yeah. Chantal Hewitt (18:41) that you've mentioned that it just brings me to an experience that I had with my son's OT and she hadn't worked with many PDA children before and she was incredible. She kept telling me at the end of the sessions almost like defending her work which I get but I also understood so it wasn't I was like it's okay you don't you know I get it but she kept saying I just Rachel (19:00) Yeah. Chantal Hewitt (19:04) It looks like we didn't do anything, but this is what I did when he wasn't able to do this and this. And she kept saying, I really just want to focus on building a relationship on pivoting where we need to, because if his walls are up and if his avoidance, if he feels that threat to his autonomy, that's going to impact and ruin the relationship that we're trying to establish. And I just really respected that. And I know that with, whether it's therapists, doctors, teachers, because PDA is, don't want to say it's new, but it's not a part officially of the 2013 diagnostic manual. So when you go to look at the DSM-5, if you are diagnosing autism or other conditions, PDA, ⁓ is a profile, but it's not like the research is there, but it hasn't been written in. It is very like there are organizations, too many to mention, all across the world that are advocating and gathering research and data and really working within the adult PDA community. A lot of the times even PDA as a profile was just considered part of the autism spectrum. Now there is a lot of questioning and other research going into Rachel (19:55) Yeah. Chantal Hewitt (20:17) Is PDA also a part of other neurodivergence? it part of ADHD? Is PDA a neurodivergent state by itself? There's a lot there. I'm also learning and staying as open to it as possible because my son is autistic. He has an autism diagnosis. I'm autistic as well and I'm PDA. yeah, there's just so much work that we're continuing to do in this space. But I think there is a lot of resistance to educating on this within like an academic level because everything is peer reviewed research, which is there. It's just, it's really starting to come out. So I know, Rachel, you talked a lot about systems and at the beginning of, I don't remember if you said kind of letting us down, maybe those are my words, but there's There's so much happening at a systems level that we're not able to control. Sorry, what was that? Rachel (21:03) think we're running out They are letting us down. They might be worse than us. Yeah. Chantal Hewitt (21:08) Yeah, they are. Yeah. Yeah, no, they're 100 % letting us down. that's, yeah, it's just not fair. And that's why I love the work that you do. And I also love the work that I do, because we get to be in there at a level that is with families, building those foundations. So a lot of families come to me and they're like, well, I was let down here, I was let down here. No one told me this. how come all of a sudden I've had one session with you and I already know so much more? And it's because, well, I think if you look at a huge organization, there's so many pieces that are moving and politics gets involved in all this. But if you find an individual therapist or coach or just practitioner who is there to support you in your understanding, I think you just get places so much faster because you kind of, you're not dealing with all the ⁓ all the politics, all the everything. Rachel (22:08) I think PDA is really, really misunderstood. I mean, I've worked solely in pediatrics for the last 10 years and I only really started hearing about PDA gosh in the last four years, five years. And I think there's been a huge shift. from a neurodiversity affirming point of view and like understanding autism in the last five years, that has been the massive shift. And now it's kind of PDA's turn as it were, but there's still so much misunderstanding about autism that I almost, feel like the vast majority of even practitioners almost not ready to go there with PDA because they're still making that shift about being neurodiversity affirming. Chantal Hewitt (22:41) Mm. you Rachel (22:52) Never mind looking at PDA. I think PDA is massively misunderstood. I feel, cause I've been in pediatrics solely for the last 10 years. And I would say only within the last maybe three to four years, I started hearing about PDA and I really didn't have a lot of understanding about it myself. But I feel like in the last five years, maybe a little bit more, there's been this huge neurodiversity affirming shift. and really understanding practices that are now gold standard for autistic children. That has been a huge, huge shift. And I think PDA is now starting to get its turn, so to speak. But I think for a lot of practitioners, they haven't even made that neurodiversity affirming shift yet. That's like the work for them. I think PDA is almost, I don't know why, but PDA is sort of seen as the next level of acceptance, I guess. and they really is no training. I've all I know about PDA is from Instagram and from podcasts. And that has been me doing my own learning and my own work. And to be honest, for a while I heard about PDA and I was like, but isn't that just like really intense and inflexibility within autism? Chantal Hewitt (23:45) Mm. Rachel (24:07) And we just bring coming up with another diagnosis. And it's only been like in the last two years, I feel really embarrassed to say that, but really like, have I actually kind of embraced this? No, this is an actual nervous system difference that is completely different to autism. So much so that the standard strategies that you would use for autistic child will not work. And if anything, will make it worse for a PDAer. And I think of all of these families that have come to me with these kids and they've had, you know, these really sticky behaviors that have been, you whether it's around toileting or feeding or sleep or, you know, any of these things. I'm like, giving them everything that I've got. I'm giving them the autism strategies that I know. I'm giving them sensory. I'm giving them sensory motor. I'm throwing everything at them. trying to brainstorm with them and just can't shift this child. And now I'm like, it was PDA all along. Like these kids were PDAs. This demand. This was the persistent drive for autonomy. Their nervous system felt threatened and us keeping on pushing the toileting agenda was making it so much worse. And we actually need to just step back and just support this kid and help them become regular again. establish a relationship, a connection, and just go back to the nervous system, which is actually beautifully simple in its huge complexity. So yeah, that's me. And I'm fully in the neurodivergent field. I'm doing trainings all the time because I can't get enough of it. It's like my special interest is literally like occupational therapy, which is kind of embarrassing. yeah. Chantal Hewitt (25:46) not embarrassing, that means that you're an amazing practitioner, I think, because you invest in the children you support, in the families and yourself. Rachel (25:54) Yeah, no, well, I I just I really love to learn and even in all of the trainings that I've done, PDA is just not coming up. It's been up to me and from listening to incredible practitioners talk about it and sharing their own personal experiences with their kids. So yeah, it's a huge shift that needs to still be happening. There's so much work still to be done. Chantal Hewitt (26:12) Thank you for being so open and honest and like admitting that. I don't want to say admitting, but like sharing that. I think that's really. I think that's really hard. Rachel (26:20) Well, I can't be the only one. This is my daily bread. And I love what I do. And I love being neurodiversity affirming. And I love being nervous system driven. This is me coming to you and being like, I don't understand PDA as much as I should do. that's why I'm trying to learn so, so much. ⁓ And it really has made a huge shift in my practice. Chantal Hewitt (26:36) Yeah. Rachel (26:41) like really, like hugely, just understanding PDA ⁓ I Chantal Hewitt (26:46) I think Rachel, you've just said so many incredible things that not only I feel will really support families, but if there are any other occupational therapists or therapists or doctors or anyone who supports children, teachers, if they are listening to this episode, have you considered PDA? Because exactly what you were saying is where so many parents that I see They usually hit a rock bottom where everything has gotten so intense and it's not necessarily that the PDA itself, like where the demand avoidance, not the child trying to make things ever, you know, perceived that way for the parent. But a lot of the times unknowingly the parent is pushing strategies that do not support a PDA nervous system. And then when that kind of rock bottom hits that burnout, that neurodivergent burnout, that's when they stumble across PDA and they go. hold on. This is my child. All the traits of PDA. It's my child. And I don't want to say funny enough, but I guess like in hindsight, this is what happened with us as well is we just want, okay, PDA, let's give it a go and see if a super low demand approach works. It's obviously not as simple as that, but immediately when doing that, we saw this ease within our child's nervous system. And like you were saying, Rachel (27:38) Yeah. Chantal Hewitt (28:03) A lot of autism strategies won't work, especially things that are quite rigid. So your PDA child, if they're autistic, they also very much so probably do resist change. They do like things a certain way, but the difference here is really important is that they need the spontaneity and then the control to adjust their routines, which obviously creates clash within a home that's trying to function. And that's a whole other batch of episodes to support that. However, I think it, like you said, it's so simple. It just goes back to that relationship and those connections. And really I love your house analogy, you know, building those foundations. Rachel (28:30) Yeah. Chantal Hewitt (28:39) And this also kind of reminds me, I get this question a lot. And a lot of the times I will say it's from parents who I don't believe have a PDA child. It's from a lot of teachers, which is fear because they do see a lot of behaviors that they find challenging. I'm a teacher, used to work for over a decade within early childhood education. And it is hard. So this is not an attack at teachers. I promise I do. Love you guys. Rachel (28:48) You Yeah. Chantal Hewitt (29:03) The systems are hard for you, but a lot of the times I get asked, well, doesn't every child need autonomy? Won't every child get upset if they don't have their way? And that is where I feel the conversation goes the wrong way is people go, yep, now you've got to push harder. You have to put more consequences in place. You have to... Rachel (29:04) I love you guys. Chantal Hewitt (29:24) teach them logical reasoning and what happens if they do this, then well, they're not going to get their way. But you will see the difference between a PDA child if your child is pathologically demand avoidant or has that persistent drive for autonomy, the nicer term. And I will give you a really clear example or one that's quite clear to me. Over Christmas, my son was very dysregulated. We kind of knew it as just the change, the holidays, the people. Within a couple hours, he was outside in tears, like kicking against a wall and just begging to like use my phone just to get that, that regulation going where he could just watch something that was predictable. And he sat outside for at least an hour. And finally, when he was able to communicate what had gone on, like what kind of triggered him and it would probably was a lead up to it as well. But the biggest thing was there are four cousins and two of them got a scooter. And usually this is the first year where they haven't all got the same thing. That was my bad. That never won't do that again. But the difference is that, so my other son literally was like, cool. You, you got a scooter. kind of wanted that, but that's fine. I got something else. My son loved the toy that he got. Absolutely loved it. However, it affected him for weeks after, like even to the point where within 24 hours he was given. the scooter that his cousins got and immediately that was just him being able to relax. But then he kept replaying it later and later. And you can just see the difference in anxiety. And then it was brought up. Well, you know, the other two liked the other toys, but that's, know, they just got on with it. And I'm like, that is the difference. That is the point. It has nothing to do with how you're parenting or you're not teaching them something, but it's. actually an anxiety response to the fact that they are not safe in their nervous system. They have to equalize to feel like they're at that level or else they don't feel safe. that to me is such a clear indication of if your child is PDA, something as simple as that for a neurotypical child. would not derail their day, their weeks, their whole holidays. They wouldn't be thinking about it constantly. If your child is PDA, they most likely are. And there's usually like, once they gain that control back, it's like, this switch is kind of flipped and you're just going, whoa, what happened? But. Rachel (31:43) Yeah. Yeah. It's, I think what I was thinking about when you were talking about your son is, you know, I think it's so difficult. I think, I think where the difficulty is with understanding PDA is this shift in, and it kind of comes back to individual differences. How do you view discipline? How do you view compliance? How are you brought up? How do you view permissive parenting, authoritative parenting? You know, there's There's so much, know, like gentle parenting now is getting a bad rep, but how do you view all of those parenting styles and how you were brought up? Because PDA is gonna rock your world if you are someone who has needed to be in a very authoritative figure or in a place of kind of power in the dynamic with your child. And I was not speaking just about parents, I'm speaking about practitioners as well and teachers. So hard for a teacher because they are literally that person in a class. And then you've got these, you know, this kiddo equalizing and you're like, but this is, this is threatening my autonomy as well. And then you're just going to have this power struggle. that is, I think one of the big challenges towards PDA being accepted is that The work is at the level of the adult. The work is not at the level of the child. The child just needs to feel safe again. They don't need to do any fine motor work. They don't need to do any sensory circuits. They don't need to do any of that stuff. We need to do the stuff for them. We need to be constantly co-regulating. We need to be strewering. We need to be doing all of these things. We need to be working on our own regulation when we feel that there's a power struggle. Chantal Hewitt (33:10) Hmm. Rachel (33:25) And that's hard. And that's a huge shift that we have to make. Chantal Hewitt (33:29) It is. yeah, like you said, if, if you look at how you were parented and those kind of like unspoken ways, yeah, that are just ingrained in you. It's a lot. And I've worked with a lot of families who come from that very discipline, authoritative kind of parenting style. My husband is even one of them and he's had to do a huge shift. Rachel (33:38) rules, I guess. Chantal Hewitt (33:53) But once you begin to see how much safer your child feels, how much more they want to be included in school or go to school, that is a huge thing for PDA children. it's huge. And I think when we look at that school avoidance or even that push to, you know, there must be X amount of great attendance or they need to do this course and this preparation and this exam. There's so much demand within that even for just a neurotypical child, let alone PDA, but how a PDA or handles it as they just get pushed further into shutdown. So I'm saying this just to bring it back to the relationship as the foundation and safety and trust and being attuned. to the child that you're parenting in your care, educating, and something else that I wanted to bring up, which we probably won't have time to go into, but we were talking about PDA and how a teacher kind of manages that within the classroom because it's affecting everyone else as well. And all I kept thinking of was equity versus equality. And that comes up everywhere, but looking at that equitable. approach to a nervous system, obviously, an example like that, you already kind of like a way escalated up the ladder opposed to actually, okay, how can we support equity? So they don't get that overwhelmed. So they actually feel safe and supported because I kind of do it as like thresholds. Like if I look at autonomy, like one child might be quite happy with their autonomy, you know, cup being filled up here, they can function really well. can accept instructions or. Yes, I'll pick that up or whatever it is. Whereas someone with PDA, if theirs is already like, they already kind of start off at this low baseline. So personally, like my son, after a 10, 11 hour sleep, great to interact with, you know, like, I can kind of adjust what I'm saying a little bit, but I can tell the second bit. the demands of school have happened, when I pick him up, it is a completely different story and I have to adjust everything and then even look at how I'm adjusting at the beginning of the day as well to support him. All right, so for the parents listening who want to explore occupational therapy to support their autistic child, their PDA child, their neurodivergent child, a lot of parents aren't aware of the benefits of occupational therapy or the different things to look for if they are after a neurodiversity affirming occupational therapist. Rachel, do you have anything that you can offer to those parents listening that might help them with that really important decision? Rachel (36:29) I I think that, I think it might come down to actually just having an alignment chat with this therapist. I think it's really important to kind of get a feel of the person that's going to be working with your child before you actually commit to therapy, which is not often the model. Sometimes you just get booked in, so an admin person is coming in and booking you in, and then you just see this therapist and now you've already paid for the assessment. So you have to kind of have to just carry on doing this therapy with this person. I think the questions that are really important to ask are, you know, what does, what does, what does the therapy session look like? how do you, how will you respond to my child if they don't want to do what you've set out for them? how do you view rewards? You know, how do you view compliance? Because in my head, neurodiversity affirming OT, the the core of that session has to be child led. Child led doesn't have to be letting a child just like run all over the place. It's about providing constant choice and autonomy. I have my goals in my head that I want to do. I also have enough experience to kind of be flexible for junior therapists. It is difficult because you kind of have to set you sort of get rigid. I'm sure it's, you know, it's like being like a junior, like teacher, you know, you it's hard to be flexible and adapt. But I'm constantly being like, okay, these are my goals in my head. These are my activities that I want to do. I'm going to have an option of three activities for this child. I know that I'm taking off a box regardless of what activity that child is going to be choosing. But I know that that for that child, that sense of autonomy and that sense of choice and control is so regulating, whether they have PDA or not, honestly. And, and if I'm, and it's also about If that kid's energy space is not wanting to just, you know, do a puzzle or something, it's about how do I change myself up? Talking about the individual differences again, that goodness of fit. How do I adapt myself to be supportive for this child's regulation state? Do they need to be running around a little more? Do they need to be jumping? So it's constantly being, tuning to this kid and adapting yourself. That's what child led means. It's being like, this kid is my absolute focus. I have these goals in the back of my head, but ultimately the relationship is what's going to get us there. And I need to work on my relationship with this kid. How do I adapt myself and change this interaction? So this child feels safe and we can move forward. So that's like, guess the crux of it of for me, what a neurodiversity farming therapist looks like, but obviously rewards. I don't do that. Don't like rewards. I think they're weird. I think they're like. give weird power dynamics. Like, there's obviously kids are people pleases. So generally speaking, sometimes our PDA is not, but we love that about them. And yeah, so a reward system definitely is like a no-no for me in terms of we don't do that's compliance. It's too, it's too far leaning towards a compliance, which is like a model, which is outdated now. We don't do that. Yeah. And I guess, I guess ultimately a therapist that's really wanting to center the family as well and making sure that, you know, your sessions are not in isolation to what's happening in the bigger family picture. Yeah, that's a lot that goes on. Chantal Hewitt (39:33) Hmm. But I'm going to hold on to all the things in my head and write them down for when I invite you back onto the show to discuss, because this has been such an amazing overview. And I think something that you had touched on earlier was your practice that you use. And I'm not sure if a lot of families are familiar with ⁓ DIR Floortime and kind of the conversation around that. If you want to just let us know. Rachel (39:43) Yeah. Yeah. Chantal Hewitt (39:59) ⁓ little bit about what it is and I guess why, is that your preferred method? And yeah. Rachel (40:04) My thing. So it is so D I R floor time. So the D stands for development, like developmental capacities. So we speak about this sort of ladder of development. the I stands for individual differences. I've spoken a lot about that. I love using the word individual differences because it just feels so neurodiversity affirming. Like we all have individual differences and some are really impacting on the things that we want to do every day and some aren't. they're all differences. And then the R is relationship. And that is the core of the model. And then the floor time, it's called floor time, because it's kind of like, you generally, it happens on the floor, but floor time happens anywhere. And why I love the model so much is so firstly, it's a very holistic model in that you're going in and you're learning with special education teachers and speech therapists and psychologists, you're learning together. You're learning about the child as a whole. So as a floor time therapist, yes, I've got this beautiful background knowledge as an OT of this child sensory system, but because of floor time, I have a really good understanding of how to support that child's communication. Thinking a little bit more into like the psychology of that kid and what they're experiencing. It's It's just a really holistic approach. yeah, so the D in it stands for development and that's essentially the core, the ground level of that ladder is regulation. So that sense of trust and that sense of safety is this child regulated. Do they feel safe? Do they trust me? And so working there first. And this is for any child that comes in, whether it's a three-year-old autistic little one who's just really struggling with their overall regulation or whether it's a 10-year child with dyspraxia, we're always going to start at the bottom of does this child feel safe? And then we build on from there. And then the next part of it is And then the second one is engaging and relating. And so that's looking at is this kid are able to engage with me, are we able to have some kind of reciprocal interaction? And I think when we when we're talking about that, I really like to see can I bring this child into shared joy with me? So it's not about establishing can this child maintain eye contact? Or is this child does this child have a still body? Are they looking at me? Are they showing your "typical" signs of shared attention? It could be, and generally speaking, This kid is looking outside the window at the trees. But I know because of the relationship that I have with this child, maybe what's just happened before We're still sharing joy together, but it doesn't have to look neurotypical. It can look very much however that child needs it to look like and where they are at developmentally as well. And as you're kind of working through the ladder, so to speak, you're just supporting development. and kind of filling in the brick work in that house that I spoke about. As you're able to go a little bit higher to be able to be supporting more flexible thinking, supporting, you know, being able to tolerate different ideas and play, because that's really important when they're playing with peers. Can I help this kid or when something is different, can I help them process and come up with a different idea of how to play so that when they go into school, they are able to engage joyfully with children around them, if that's what they want to do. And so yeah, that's kind of in a nutshell. I hope I've done it justice because it is just the most incredible model and it's something I'll hoping to do my expert trainers this year. But I just, think it's from the models that I know of out there, this one feels like the most neurodiversity affirming to me just simply because it puts relationship and safety at the core of it. Chantal Hewitt (43:42) Thank you for sharing that. gosh, so many things running through my mind right now, because you've just, yeah, no, you did it justice. I, it's funny, and I was sharing this, before with you is with, with this model, because you're right, there's so many models and this is probably like the one that I have gone, yep. That ticked so many boxes and then something that is a flag that keeps coming up for me. And you kind of touched on it as well. And then, ⁓ I guess, put your spin on it, which I really appreciate. And it's when you spoke of what does that engaging look like with a child and that it does not mean to look like the way that, and I guess this is every different practitioner might have their own spin on it. So some may be quite focused say on that traditional engaging and what that looks like. But I think like where I can, I guess my perspective is, and I share this with you, is because of the individual differences in autistic children, not forcing what that neurotypical, and if you're listening, I've just quoted that, but not necessarily just supporting what neurotypically that engagement would look like. And I loved your example of understanding that they may be gazing off and looking at something or observing something, and they don't need to be communicating a certain way. They don't need to be... going back and forth because forcing a child like to do that is actually quite uncomfortable. And it's almost like that would take away the safety or the foundation that's there. So I think it's so great. Yeah, to kind of frame it that way of of sharing joy and it's and it's the child led joy, which is so cool. And I think that also kind of goes into when you're talking about like supporting and schooling and those peer relationships and Rachel (45:05) I mean. Chantal Hewitt (45:21) A lot of, I think, goals that families have are focused on, you know, I need them to have good friendships, I need them to have these social things. A lot of the autistic adults that I know, myself included, they actually go back to school and go, it really made me anxious when I was being forced into these situations. So like, I think it is so cool to really understand the child, like as they develop and... give them that autonomy and that support so then they feel confident to go, well, actually, that's not my thing. Or this is how I navigate when something doesn't go the way that in my head it's meant to. It's such important skills. That language was off. It's our important skills. And I think it also cycles back as well, Rachel, to when you were talking about parenting approaches, because when you were saying that one thing in my head, I was going, it's so funny because these certain things do get a really bad reputation. But at the end of the day, I don't know one parent that goes, I only identify with authoritative parenting or this. it's like, you kind of pick based on your family values. It's, my experiences. You pick what works for you. And I think even though I would say that we parent very, very low demand, we also enforce boundaries that are needed to keep our family safe. And that I think is a really important thing that people need to understand when we're looking at parenting approaches, but even when you're looking at the model that you use and how, even if someone else may not be using it in a neurodiversity affirming way, say with trying to shift that joint engagement that they have with the child. I believe it's the practitioner and your practice that makes it neurodiversity affirming. Would you kind of agree to that? Or I don't know if you have any thoughts on that. Rachel (46:52) Yeah. Yeah, of course. Yeah, I mean, any model can be swayed and made to fit into a person's own views on the world, which is kind of a scary thing. So yeah, 100%. I mean, it comes down to how you're an upbringing and where you're at with the neurodiversity affirming shift and how much work, inner work you're doing as well. A lot of floor time is reflecting back on yourself. Like that's part of the work. yeah, definitely. Anything can be made to be shifted. Chantal Hewitt (47:33) That's great. Thank you. And thanks for explaining that so well. I will just say if anyone does have any questions, please pop them in the comments and I will make sure that they get sent off to Rachel, if that's okay. ⁓ Just so I'm not just answering kind of, you know, willy-nilly. Rachel (47:46) I'm sure you do a pretty good job. Chantal Hewitt (47:49) Okay, and Rachel, I think something that is so important ⁓ that might be really helpful for the listeners of this podcast, and you mentioned in your experience with PDA Children, it's a growing understanding and a shift, and that you have noticed when you've kind of gone back to those simple foundations, how much can change. So if you were going to offer, any guidance or any advice or Yeah, any of your learnings in the PDA space and occupational therapy, what would that be? Rachel (48:17) I think my advice is to definitely to practitioners. And I guess to a lesser extent parents to know that practitioners need to take more responsibility to learn about PDA and to get curious about it. Because if you are, if you say that you're neurodiversity affirming therapist, you need to do the work to actually learn more about PDA. Cause I feel like you're not, we're not really doing our parents ⁓ the, that we're doing our parents a disservice by not understanding PDA and this really, really nuanced nervous system that is so different to anything that we've been taught about in training. And I think I've, as I said in the beginning, I found such a shift in my interactions with parents when I'm now able to pick up, this is PDA. This is not a sensory motor issue. This is not autism This is, this is purely PDA and we need to look at the nervous system. How critical that's been to then say, let's put your feet off the pedals and actually just focus on regulation and not let's stop pushing toileting or pushing feeding or pushing this, whatever it is that is a sticky behavior. it's made such an impact on my therapy because I hate not having answers. Like. It's the worst thing for me. I always, I like to know that, okay, this parent came to me with this issue and we were able to brainstorm it together. Like that is my job and whatever we can go into my psyche about it, but that's for another episode. But yeah, so it's really about practitioners needing to do the work because the training's not going to cover it. I haven't come across many. It's mostly only parents who now have the trainings. So, you know, learn about it yourself, follow Instagramers that are PDAs, listen to the podcasts, listen to Attuned spectrum, you know, like do the work because it's really valuable, not just for your own practice as an OT, but obviously, of course, for this family that you're serving. Chantal Hewitt (49:59) Thank you. And thank you for mentioning that because speaking as a parent who massively advocates within this space, like not just in the professional work, but within my own community and for my child and children. Having other people who support your child who understand PDA and don't just go, ⁓ hold on. I don't get it. Therefore I read this thing and it's not a thing that can be so. I don't even want to say triggering, it's just, it's not validating as a parent who is already exhausted, who's already doing everything possibly that they can for their child. And yeah, I just think that that is really helpful if the therapist and those who are working with our children, if they, they don't need to know everything at all. They might even go, ⁓ I thought I was being really neurodiversity affirming, but hold on. Now I've just learned this and let's work together to see. how I can improve your child's wellbeing and really respect those differences that they have. Rachel (51:01) and being willing to learn from the parent as the expert on their child. And if the parent is saying, I think my child's a PDAer like listen to them. Like they know more. They've probably done so many more podcasts and done the research, so much more than you have. So if they come to you with that, like hold onto it and then you need to go and read up on it and make sure that you can support this family. And also really critically, if you can't support the family and you don't feel like you have the skills. Chantal Hewitt (51:14) Bye. Rachel (51:28) this family and say I think you'd be better served by another therapist that is xyz trained like because this is you're generally speaking this is the family's like finances like and it's it's livelihood like you know be responsible as a therapist as well. Chantal Hewitt (51:29) Hmm. Yeah. I love that. Thank you. Okay, as we wrap up, would love to know, Rachel, you kind of talked about your mission at the beginning. Do you have a vision for this space that you work in? Just the neurodiversity space or occupational therapy, anything in the coming years? What do you hope to see? Rachel (52:04) I really hope to see us moving away from a very child-centric model to a model that looks at the family system and that that child lives and breathes and learns and plays within the dynamics of a family, within relationship with their mum and their dad and their siblings and understanding that when we are giving strategies to a parent or when we're coming with a list of these are all the things that you need to work on. We're understanding parental capacity. We're understanding if this kiddo is neurodivergent, very high likelihood that we're working with neurodivergent parents as well. Are you adapting the way that you're working to support these parents to be able to take on these strategies and understand how to implement them in the day? So that it's not extra work. It's just so critical. And I think if we have that shift towards looking at a family and we don't, again, it's a training issue. We need to have better training in that. But just simply starting with asking the parent, where are you at right now? Like, where is your capacity at? Like, tell me, are you at a space where I can offer you a whole program to do every day? Do you want a program? Do you want to even come into the session? you need to use these sessions as a time for you to just have coffee and be by yourself? Like where are you at? And match the parent where they're at. I think that's, I'd love to see more therapists doing that, because I think we'd have so much more. Just happier. Kids and families. Yeah. Chantal Hewitt (53:33) I honestly couldn't agree more. It's like, yeah, I love family systems. That's the work that I do as well. Because these things, while they're, start in one place, everyone needs to support, be consistent. Everyone feeds off each other that energy within a home. And if you look at that, that primary caregiver, that co-regulator, if they, like you said, if their capacity is just gone, how do we think their capacity is going to be to show up for their neurodivergent child. It's really hard. So, so yeah, that's so helpful and such great insight. Thank you. I'm going to join you in sharing a vision. My, my vision and the reason why I do this work is because of our systems. And I think we use the word they suck or they're failing or something earlier. Rachel (54:20) letting us down. Chantal Hewitt (54:20) Yeah. Letting us down. Okay. That is actually better than sucks. but our systems, they're too big, too many players. They are letting us down. And my vision is that parents who are not at capacity. So I will use your word cause I love that they will be supported and be at the capacity that they need to be and not just surviving. They actually, I want to see them confidently supporting their child. raising a child that knows their differences, understands that they're valued and knows how to advocate for themselves. But none of that work can happen if these big systems keep pushing us down and if the families don't know how to support and advocate for their child and their family. Rachel (55:05) Yeah, 100%. Chantal Hewitt (55:06) Yeah, and I guess on that topic, I did just want to share with everyone who's been listening to Attuned Spectrum. A couple months ago, I opened the doors to our autism and PDA support community and we welcomed a small, lovely group of founding members and I'm so, so glad that they are a part of this work. They're seeing such incredible shifts just already in the first month or two of us working together. Rachel (55:07) Okay. Chantal Hewitt (55:32) And I would like to share that right now I have a waitlist open. If you want, can head on over to chantalhewitt.com/waitlist and you will get an extra special exclusive discount that you can use once the doors open again. So we are welcoming another group, a second group of members at the end of March. So if it interests you, please head on over there and I'll also link it in the show notes and the description below. And Rachel, I would love to say thank you so much for being on Attuned Spectrum podcast. I love your vision and your mission and your work just seems to be so genuine and supportive of all the children and families that you help. So I would love to know if you'd like to share, where can my listeners find you? And is there anything that you are currently offering that might be of support to them? Rachel (56:26) Thank you. It's been such a joy to be here with you and talk with you and learn from you. I've chat for ages. So I have an Instagram page. It's called Growing Joy OT. So I offer a lot of really just my brain in a page. So a lot of educational content around child development. But I'm also offering online consults. So I started my own private practice this year. So if you'd like to work with me, I do parent coaching. I also do very specifically floor time parent coaching. So yeah, you're welcome to contact me. can pop me a message, my link in my bio on my Instagram page. I can also pop my email. Chantal Hewitt (57:10) Cool, and I will definitely pop Rachel's details in the show notes as well, so then you will be able to just find her there when you need to. ⁓ ⁓ Thanks so much, Rachel, for joining us this week on Attuned Spectrum podcast. That was amazing. I do love your work and yeah, everyone else grab Rachel's details below Rachel (57:32) Thank you so much for having me. It was really great. See you. Bye.

Autism Spectrum & PDA Parenting: Supporting Sensory Needs, Safety, and Wellbeing through OT (Occupational Therapy)

About this episode

Chapters

Autism Spectrum & PDA Parenting: Supporting Sensory Needs, Safety, and Wellbeing through OT (Occupational Therapy)

About this episode

Chapters

Before you go — this might be exactly what you need