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Supporting Self-Care, Learning & Leisure: OT Approaches for PDA Children
531 Plays4 days ago
In this episode, Rachel from the PDA Society is joined by Bryher Hill, an occupational therapist from Helping Kids Shine, to explore how occupational therapy can support PDA children and their families.
Bryher shares insight into how occupational therapy looks different when working with PDA profiles, focusing less on compliance and more on understanding the underlying needs driving behaviour. The conversation explores how everyday activities such as self-care, routines and transitions can become overwhelming when anxiety and demand sensitivity are high.
Part 1 focuses on understanding the role of occupational therapy in supporting regulation, autonomy and participation in daily life. Bryher explains how observing a child’s sensory profile, nervous system responses and communication style can help identify what is making tasks feel difficult.
The discussion also highlights the importance of adapting expectations, reducing pressure and working collaboratively with the child, rather than imposing routines that may increase distress. Bryher emphasises that small, thoughtful adjustments can make everyday activities feel more achievable and less threatening.
Key Themes
- The role of occupational therapy in supporting PDA children
- Understanding behaviour through a sensory and nervous system lens
- Reducing demands around routines and expectations
- Supporting autonomy and participation in daily life
- Working collaboratively rather than directing
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” subscriber episode, is available through our Training Hub.
You can access it here: https://training.pdasociety.org.uk/pda-podcasts/
Disclaimer
The views and opinions expressed by guest speakers in this podcast are their own and do not necessarily reflect those of the PDA Society. While we aim to provide balanced and inclusive discussions, individual experiences and perspectives may vary. The PDA Society is committed to using language and terminology that reflects the preferences of PDA and autistic people, but sometimes our guests may use language and terminology which differs. Appearance on our podcast is not an endorsement of an individual, and not all of our guests will align with our position on the issues discussed.
Further sources of support and information
- PDA Society Training Hub: https://training.pdasociety.org.uk/pda-podcasts/
- PDA Society Website: https://www.pdasociety.org.uk/
- PDA Society Support Service: https://www.pdasociety.org.uk/support-and-training/support/
Guest links:
Helping Kids Shine empower children, young people and families through Occupational Therapy and Speech and Language Therapy, supporting families to navigate challenges with improved understanding and confidence. With a focus on strengths and neurodiversity-affirming practice, we open doors to brighter futures where children can move from surviving to thriving. Want to learn more? Find us at the following links:
https://www.facebook.com/helpingkidsshineUK/
https://www.instagram.com/helpingkidsshineuk/
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Transcript
Introduction to PDA Society Podcast
00:00:02
Speaker
Hello and welcome to the PDA Society's podcast. We're here to chat about all things PDA to help you understand what people with this profile of autism are experiencing and how you can help.
00:00:13
Speaker
We'll be sharing research, professional expertise and the insights of people with lived experience to help you understand PDA and have more tools to make life easier. So, whether you're a PDA yourself, family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
Pediatric Occupational Therapy for PDA
00:00:39
Speaker
Welcome to the PDA Society podcast, where we share lived experiences and practical insights to help families, professionals and PDAs themselves feel supported and understood. My name is Rachel and I'm your host for today's podcast.
00:00:53
Speaker
Today we're exploring the topic of paediatric occupational therapy. We'll look at some of the difficulties that many PDA children and their families experience and what strategies or interventions can help.
00:01:06
Speaker
So if you're a parent of a PDA child or you support PDA child professionally, this podcast will give you some valuable first-hand
Introducing Briar Hill and 'Helping Kids Shine'
00:01:15
Speaker
insight. So my guest today is Briar Hill. So welcome Briar. Would you like to say a few words about yourself and the work that you do?
00:01:22
Speaker
Absolutely, thank you. So yes, my name is Briar Hill. I am an occupational therapist and I'm based in South Wales. I run a business called Helping Kids Shine, which is multidisciplinary. So currently we have occupational therapy and speech and language therapy, but more so occupational therapy and the speech and language side is growing. and We work with a variety of children, young people and families from, we say from birth to 25, because we try to catch that whole childhood and that transition phase as well. um And our whole aim is to identify what's going on, support people to manage those things and empower. And I think that empower bit is really, really important, especially for the families that we work with as well. We do our best to work in a neurodiversity affirming um manner. We're trying to move more towards being strengths based, although we have to be deficit space sometimes when we're looking at EHDPs and um IDPs and things like that. But, you know, we're doing our best to work alongside our families and get them to where they need to be and be their champions, really, and their cheerleaders.
00:02:18
Speaker
Amazing. Great. So I bet, yeah, I bet that's a very varied work, isn't it? So, yeah, um I guess a great place to start really then would be just sort of give us, you know, for those for those families that maybe haven't so far had any input from occupational therapy or might not even know what occupational therapy is. Could you just explain a little bit bit and around that role?
The Role of Occupational Therapy
00:02:39
Speaker
Absolutely. um It's one of those things that I find occupational therapy really hard to explain sometimes. And when people do know about occupational therapy, it's often that they've had a grandparent in hospital who's had a hip replacement and they've needed to have a toilet frame or something of that to come home. That seems to be the traditional view of occupational therapy. But occupational therapy actually works across the lifespan.
00:02:58
Speaker
um The primary goal of occupational therapy is to help you participate in activities of everyday life. So literally everything we do in our lives is an activity and therefore some occupational therapists are interested in. and It means that we end up with a bit of a crossover with our other professional colleagues. So, you know, we do get interested in psychology, but we're not psychologists. We do get interested in access to education. We do get interested in speech, language, communication. So. We kind of sit there and we kind of cross borders and try not step on toes at the same time. But our main purpose is to help people to function, to do the things that they need and they want to do in life. and I mean, the key aspects of OT, we have assessments, so understanding what's going on from a strength space, what their needs are, what their interests are and the environment that they're in.
Challenges in NHS for PDA Therapy
00:03:43
Speaker
We then move on to what would have traditionally be called intervention, but we kind of like to call it therapy now. It sounds a little bit nicer um and definitely treatment doesn't sound right, but therapy sounds better as well. So we're supporting skill development, we're adapting tasks for environments and we're promoting participation.
00:03:58
Speaker
collaboration is a major part. So we don't just work with an individual or a young person, we work with everyone around them as well, because actually that understanding and um education is so important. And actually, if you can help the people who are in that circle of support around that young person, you're going to get such better outcomes than just working with that young person themselves. um And also recognizing the absolute like valuable input that families have as well because you know families are the experts and they know so much and to not include them would not make sense at all. um And then the empowering part is very much helping people to build their confidence their autonomy. helping young people to learn to self-advocate, because I think that's really, really important as they kind of move into the adult world as well. um And just helping people to be their best selves as well. But we want to, we we say that we like to help meet people move from surviving through to thriving, which I think it sounds quite cool, really. And that does kind of like underlie our ethos.
00:04:54
Speaker
i mean, thinking about pathological demand avoidance or PDAs and their families, and OT is a little bit different because we have to be really, really flexible with how we do things and relationship building is such a massive part of it. What people will find is you can access occupational therapists through the and NHS, some specialist schools and settings employ their own as well. And then you can also find occupational therapists in private practice like us. And you might find sole providers who just got one OT on their own, or you might find businesses like ours where we've grown because of the demand for services. um
00:05:29
Speaker
What we have found with PDA is is we need to spend more time developing that relationship before we're likely to be able to assess or find our way through to any hopeful positive outcomes.
Benefits of Private Practice for PDA
00:05:41
Speaker
So it's that time. And unfortunately, in the NHS, that time isn't there as much. So I think.
00:05:47
Speaker
we quite enjoy working with PDAs and the flexibility we have to need and the fact that we might plan a session and the session looks completely different when we actually do it and we just go with the flow yeah um but if you are time limited so you have an hour to meet this family work out what to do you don't have that luxury of doing that so yeah that's where I think PDAs and private practice sits quite nicely together because we get that that element as well so um and as we know as As you said, you know, for for PDA individuals, it's that building those bonds of trust, isn't it? You know, if if the PDA trusts you, then they're going open up more to you and you'd be able you're going to be able to help support the better, aren't you? But you've got to have that time. And you're so right. Yeah. mean, you know, very often with NHS, there just isn't the time to be able to do that, isn't it? so Yeah. Yeah.
00:06:32
Speaker
yeah And I think, you know, you say about the trust of the PDA, but there's also the trust of the family as well. Because I think so many families come to us where they've reached crisis, their children are in burnout, and nobody is listening.
00:06:43
Speaker
And that's where we see ourselves is we listen and we support, which sometimes that's the first time people have actually had that help as well. So, you know, again, it's that time, isn't It's taking that time. And it's also...
00:06:55
Speaker
if you have a child who can't come to a session it's looking into why they can't come to session rather than just saying oh well we'll have to discharge you then um so that's the other side it's like we've always tried to adapt and be flexible to meet the individual needs rather than putting up those barriers yes it's those barriers to care isn't it it's you know the the the parent might desperately want to get the child there and they've done everything they can but sometimes that child's just they've got them to the car they've got them in the car park but there's no way that child's moving out of that car isn't it you know and yeah being having that flexibility to be able to go to the car and I have had car park sessions before and I think um COVID was really a obviously COVID was not a good time But it also helped us learn about working
Virtual OT Innovations Post-COVID
00:07:38
Speaker
virtually. And there were some children that I worked with in virtual over COVID who would have never managed to access OT in the past. So that gave us another way in to support when actually a young person struggled getting dressed. So that was the first challenge. They couldn't get out of the house cause they couldn't get dressed. But also there was no way they were going to go into a clinic setting. But by their mum being there with them in their safe space, in their safe clothing, et cetera, et cetera, and me not being as much of a threat because I was on a screen rather than being there in person we got a really thorough assessment done and you know that kid's doing really well now but we wouldn't have even learned that that was possible without COVID happening yeah yeah and that's great and I think that's also valuable for many of our listeners who might not actually realize that you can do OT virtually as well you know doesn't have to be in person so that's great It's not always our preference to do it, but I will be honest. um But if needs must and it can be justified, then, you know, you try.
00:08:33
Speaker
Yeah, exactly. yeah Exactly. OK, so what sort barriers then are there for children, maybe accessing personal care? So let's touch on that first of all.
Barriers to Personal Care for PDAs
00:08:43
Speaker
What are the typical things maybe that you get families contacting? You got help, we can't, you know, we can't do this. Yeah, we we really do. um I mean, PDAs face a variety of barriers when it comes to personal care. So, you know, we're thinking things like washing, dressing, toileting, brushing teeth.
00:09:03
Speaker
anything you need to do to get yourself ready really sleep i would say sleep comes into personal care as well um i mean obviously the biggest part is demand avoidance so even routine self-care tasks can be perceived as demands um so that's going to trigger anxiety and avoidance and we know that the underlying of the pda is anxiety and the more anxiety you have the less likely you're going to do the thing that you're needing or being wanted to do um Add to that though also we've got sensory sensitivity. So, you know, many neurodivergent people struggle with either over or under sensitivity to in touch, textures, smell, sounds. um That can make personal characteristics really distressing. So, you know, they might not like the water temperature. They might not the text like not light textures of clothes. They may struggle with the um the texture or the taste of toothpaste, that kind of thing. So it's almost like
00:09:55
Speaker
if If those things aren't quite in balance for them, then that's more of a demand again, because it's ah it's a task that they don't enjoy anyway. So I think that kind of adds to it as well. We also, as OTs, we look at interoception, which is our understanding of our internal bodily signals. So that's things like hunger first, need in the toilet, pain, temperature and our emotional states.
00:10:18
Speaker
um Really important for recognizing and responding to personal care needs. and But with PDAs, internal cues can also feel like demands. So then if you have a PDA who noticed they're tired, for instance, and their brain goes, oh, I need to go to sleep. That's a demand that's just clicked in. And then the ability to then progress on to going to sleep is so much more of a challenge because of that internalized demand. and Add to that people who have challenges of understanding those bodily signals, If they can't understand what that signal means, it may just feel frightening all altogether. so again, we're going to avoid because it's scary. It's not it's not a good place to be. um So then acting on those sensations can also feel really overwhelming. So yeah, interception, internal demands, linking with personal care means, you know, you've got an increased reliance on caregivers um and potential frustration for both child and family because, you know, there's only so many ways you can suggest to do your teeth, for instance. Yeah. um
00:11:16
Speaker
Yeah. And then, I mean, on top of that, we've got the need for control. um Communication differences come into it as well. And then executive function challenges. So many of our young people struggle with that higher thinking kind of of planning, sequencing, initiating tasks. So that makes self-care more complex as well. And also just to finish on the personal care is previous negative experience as well. So if you've got a child who has felt forced or shamed around personal care in the past, that can increase avoidance as well because that trust and that safety and that security has lowered. So again, it then feels a threat. So it's like,
00:11:50
Speaker
it's almost like a horrible cycle in a way that it just keeps on going round and round and round and it's it's really challenging them find ways to to get through um and make those things happen but you know i've had many parents come to me who have got kids who they can't change the bedding for instance because it's just the way it is at the moment but what i often find then is that those kids are probably around that burnout stage and they're not ready to move on from that so it's almost sometimes Helping families understand that that kind of is okay.
00:12:17
Speaker
ah You just need to ride with it for a while and eventually things will slowly start moving. But yeah, personal care can be really challenging. It is. And i think I think as a parent as well, that you feel sort of that external pressure, don't you? Absolutely. My child doesn't need to have a shower or a bath every day. They do need to brush their teeth every day. i must be a bad parent because I can't get them to do it. But actually sometimes it when the parents back off and give themselves a break, actually that also helps the child doesn't absolutely i i talk a lot used to say pick your battles but i've changed it to pick your priorities so i think that feels more positive yeah um
00:12:55
Speaker
But, you know, its does your child really need shower every day? No. um You know, if they're absolutely bogging messy, then maybe. but Or if they're into, like, teens stinking, like, anything, maybe a bit more frequent. But these things are very much their they're external social expectations, aren't they? And, you know, when you are a new parent, you are told what you are meant to do as a parent to a child. And we will all try and attain that. And I think it takes time to go,
00:13:21
Speaker
that's just not working for us let's do something else and embracing it and you know I mean personal care happens in the house anyway doesn't it so most people aren't really gonna know um so exactly yeah I mean yeah it's definitely it's hard to navigate though through and they you know those expectations they really are there from that external everyone aren't they so it's yeah It's very much that balance then, isn't it? So you as a parent are kind of in the middle going, well, I know that i should be doing this, but actually I can't because that causes X to happen. And finding that harm in that, isn't it? and
00:13:57
Speaker
It is. is and i know I know with my PDA, ah he he really struggles with cleaning his teeth. yeah And so we sort of did the whole pick the battles thing or pick your priorities. And we're like, OK, in the morning, we're just not we're not going ask. There's too many other things going on. yeah And the priority is he eats and he's dressed and he's happy.
00:14:13
Speaker
Everything else will and um And I sort of like, you know, as you say, you it's external pressure. So you don't necessarily tell anyone that he hasn't cleaned his teeth, that you send him to school with his teeth, not being cleaned. And then when whenever I went to the dentist, they go, oh, yeah, his teeth are fine. And I'm like, really? I know, exactly.
00:14:32
Speaker
You're like, how? And much to my daughter's disgust. And because and um David all was like, yeah, no, he's fine. I was like, okay he hardly ever cleans his teeth. yeah You know, if we get a toothbrush in his mouth once a week, once a four, that's good. and they were like well does he eat my sugar and I was like well no he doesn't actually he's a you know he's very much carb and fish finger sort of person he doesn't eat sweets doesn't eat sugars and they're like well therefore the need to do that isn't as much so don't stop stressing about it you know and how satisfying was it to hear that and go I can breathe a bit now it was it was like that weight that you could feel your shoulders physically drop you know and it's like
00:15:12
Speaker
oh okay no I am right you know yeah but yeah I think as parents we just beat ourselves up all the time but you know we we think about things again we think about expectations and just on that dental side of it um with my children who are questionably neurodivergent um the paste that they play out they put on your teeth so the fluoride paste so it's like nail varnish for your teeth we have now had say to dentists no You are not doing that because the amount of stress it causes, we are likely to have children who are hiding and refusing to come out of school to then go to the appointment who've just disappeared into the science block or something to get out of the way when we're like waiting to pick them up because of how unsafe they feel about that experience at the dentist. But as soon as we said, no, they're not having it.
00:15:56
Speaker
The dentist has accepted it. They've understood why. And the kids will now go again. So it's again, it's that safety, isn't it? And that security and being able to speak up as a parent, though. Yeah, I think that's really hard and you have to be brave. And yeah, it's tricky, though.
00:16:11
Speaker
it is. It is tricky. And I think, you know, because when you're with professionals, you think, well, they must know best. Yes. And obviously they are professionals and their skills and their fields. However, we've got to trust our own instinct as parents. Absolutely. And actually for my child, the the cost benefit, it's just the the cost is too much, isn't that Absolutely. But you know what? Like that whole thing about like professionals knowing best.
00:16:32
Speaker
I don't think they do but sometimes, to be honest. And I say that as a professional, that's probably not very good for business, is it really? But. I see parents as equals or even higher compared to me, because you know your life and your experiences and you know how it impacts. So, yes, I can come to it with the theory and what I have learned and the sensory integration and things like that. But, you know, your child best and you know how your family like works. so yeah, I see that hierarchy very differently, I think.
00:17:01
Speaker
Okay, that's good. That's great to know. I still get scared of challenging other professionals' minds, especially in a a personal kind of situation with my own children. But yeah, yeah from my perspective, I think, yeah, they're not always the experts.
00:17:15
Speaker
That'd be very reassuring for parents to hear as well, I'm sure. Yeah. Okay, so what about then barriers for accessing education? Because we know that for many PDAs education... Access in education is really difficult. Obviously, it's a hugely demanding environment. Very, but very. and so So what sort of things have you come across in your time as an OT and sort of, you know, how you help with those
Educational Challenges for PDAs
00:17:40
Speaker
barriers?
00:17:40
Speaker
I think accessing education is one of the biggest barriers I see for PDAs. And I would say probably the majority of PDAs I see are not in traditional education, if that makes sense. Because either they've tried it and it's just not worked and they've got to that burnout stage or their parents have recognised it's not going to work or...
00:17:59
Speaker
It's just not worked. How many times can I say it's not worked? um School, like you say, it's such a high demand environment. You've got you know explicit and implicit demands. You've got following instructions. You've got transitions. you got social expectations. like There's so much rigid routines. like School...
00:18:15
Speaker
School is not designed for our neurodivergent children. um Add in then the sensory overload as well. So you've got noisy, busy classrooms. You've got the smell of the dinner hall. You've got people moving around you all the time. You've got unexpected touch in corridors, like the amount of sensory stuff that can go on as well. um social pressures too so you know group work unstructured times pick your partner um pe like we're going to divide you into teams like all of that stuff really hard um do you know what those stuff like misunderstanding and interpreting avoidance as a defiance is a real challenge as well um or seeing it as a lack of motivation or seeing it as someone who cannot perform who is not
00:18:59
Speaker
educationally able or academically able, um that happens a lot. it's you know You've got a child who actually is really quite intelligent and can do a lot of stuff, but have that demand then placed on them, or especially if it includes like handwriting or something like that, and that ability then engage has gone, but staff, if they don't get it, will assume that that's a behavior, that it's naughty, that they're intentionally not doing the thing. So that's really hard as well and i think that's harder when you get into secondary education as well because you've got so many different teachers that you come into contact with that unless there's been a really good share of information across all of the staff no one gets it and that's when you kind of get um what behavior points and things like that isn't it or detentions it's like yeah just stop just go away um yeah total lack of individualization for school as well so you know schools are standard aren't they standard approaches
00:19:51
Speaker
And they don't think about how that then, in fact, impacts on individuals. um And then fatigue, I think, is the other thing. So, you know, masking and managing anxiety all day long can be really, really hard. and We talk a lot about the Coke bottle kids, so the kids where they've got the bottle of Coke, it's been fizzed a little bit when something's gone wrong, fizzed a bit more when that anxiety comes, you know, fizzed a bit more when they've had to do something at lunchtime. It's bit more when PE went a bit kind of tricky or they had to do something in their body that they found hard. By the time they get home to their safe place, the lid comes off. And unfortunately for the caregivers, they get the brunt of it because they're the safe people for that young person. And I think then...
00:20:32
Speaker
Again, we talk about those perpetual cycles, don't we? But that's a sign that things are hard for school. um But also it becomes really hard for the parents to manage as well, because then parents will struggle with their own regulation because they're trying to keep their kid regulated. They don't quite understand what's going on for them at school, which means that by the time the kid finally maybe goes to sleep at night, the parent is exhausted. And then it just all starts again the next day. yeah.
00:20:54
Speaker
we kind of advocate for a lot of kids to not be in school. Don't think local authorities really like us for that, to be honest. um And, you know, we sometimes talk about things like education other than at school packages, because a lot of PDAs just don't fit into the school system. But,
00:21:09
Speaker
not just mainstream, but also specialist schools, like they don't fit there either. um So it has to be very, very e bespoke. So I would say PDA has have massive challenges while accessing education. And it's a really big area where we need to pick up and go, well, actually, we can see what's happening and we recommend.
00:21:28
Speaker
but Yeah. And I think I think you've talked you mentioned earlier about communication. I think communication is so key when it's with education. mean know my back My background is actually secondary teaching. And so and i you know, when I was when I was teaching, you would have your touch point would probably be with about 300 each year.
00:21:48
Speaker
So trying to therefore, and at the beginning of the year, you will be given, right, you know, these are the list of your children that you're going to be teaching. These are the additional needs. You sort of like, you you know, you're lying next to it.
00:21:59
Speaker
yeah There you go, off you go type thing. And you might have been given a little bit extra, you know, info on some children, but not the sort of level of detail. It's almost impossible for for the for the people that the PDA child needs. So how do you...
00:22:15
Speaker
In that sort of you know mainstream secondary context, how do you help that communication
Improving Family-School Communication
00:22:22
Speaker
with schools? Is it you know is it just with a SENCA or do you actually get the touch points with the teachers as well? There's a big advocacy role for us and it's trying to reach as many people as possible. so Often it's a SENCO or in Wales we have an ALNCO, it's an additional learning needs coordinator in Wales. um Often it's them who's like our gateway in, but it's then trying to ensure things like training are provided to all people who come into contact with that young person. One page profiles are kind of present. So rather than it being like, you know, if they're lucky enough to have an EHTP or an IDP in Wales, um which is really hard. Yeah.
00:22:58
Speaker
It's still having a one page document as well it explains who they are, ideally that has been drawn up by the young person themself with some support to advocate for the things that they need rather than someone else drawing it up and just kind of highlighting a few things. But yeah, it's very much it's that advocacy, it's that training and it's trying to get that ongoing communication. We do recommend if we can, terminally update meetings and that kind of things with families and with schools to try and kind of get their feedback. Our idea would be that there was a key worker or someone assigned who the young person could build a relationship with, who they knew they could go to if there were challenges, who could then be our, an additional touch point effectively. Yeah, but it is hard.
00:23:38
Speaker
Like, honestly, it is tricky. it it it is it It is, isn't it? I know, I know sometimes when we're training. that we're delivering training to schools. We talk about anxiety passports, which I think is, so you know, very similar to what you were saying then. And it's, you know, it's it's that focusing on the anxiety, what and what triggers for this particular individual? These are the triggers. These are the things that help because it's not the same for every child, is it? Yeah, absolutely. that Individual. yeah yeah you think about um what is cold calling in classes isn't it so you know like i'm i'm just going to pick up on the child who doesn't have their hand up and ask them a question like that's the worst thing that can happen like you just think about how that anxiety builds and then how the brain stores that anxiety and that memory of it that's just to make it even harder isn't it so this is yeah each time it'll get harder yeah yeah Okay. And then it was very depressing. Sorry. It is. I know, know, I know, but it is, it is an important topic. And one that we've covered a number of times before the education on this podcast, because it is, because it is, does affect so many PDAs' lives. It really does. Um, what about then barriers, to things that people might not necessarily think straight away of then?
Obstacles in Leisure Activities for PDA Children
00:24:48
Speaker
So barriers for children accessing leisure. Ooh, okay. So leisure is cool.
00:24:53
Speaker
Um, And it does get forgotten about sometimes that you know, a child's main occupation is playing um and being themselves and, you know, school and self-care. Like how many kids actually want to do school and self-care? But leisure is is different. I mean...
00:25:07
Speaker
ah say very much the similar the similar things, you know, you've got the the perceived demands, you've got social anxiety. So if you're doing like a group pleasure activity, you've got the social anxiety of managing in that group. Sensory challenges. So again, what is it in the environment that's going on Is it too noisy? Is it too bright? Is it unpredictable? um I would say sometimes lack of choice can come in. So limited autonomy in choosing what activities to do or how to participate can lead to disengagement. um i mean, an example of that is a young person I was working with who was going to a football group, but the football group didn't quite understand him they were telling him to do set things and set times and because he wasn't then able to engage in that fully every time he ended up not feeling able to attend anymore whereas if they'd had more understanding and known that if he walked off and had a bit of a breather that was okay it wasn't him being defiant that would have been different and he may have been able to carry on with it um i think
00:26:05
Speaker
Fear of failure can come up quite a lot. um Obviously, I mean, that can cause a lot of anxiety. um But we know how many of our kids are perfectionists as well, and we'll try and try until they achieve, but also sometimes have a bit of a fixed plan of what achieving looks like as well. So if they then don't achieve the thing, they may then feel again, they can't go back or that that avoidance will kind of grow. um Add in negative past experiences again as well, just, you know, just because...
00:26:32
Speaker
Things happen, don't they? And you don't even realise it's going to be negative until it's happened. But there may then be a reduced willingness to come back or to try new things as well. So, you know, the kiddo with the football group, for instance, there is a chance he may have gone, well, I'm not going to try rugby. I'm not going to try cricket. I'm not going to try swimming because it didn't work at football.
00:26:48
Speaker
So there's that as well. And then transitions. So moving from one activity to another, stopping and starting, but also things like transitions through an activity. So if you think about going swimming, for instance, there are so many transitions. You've got to get out the car car and get into change room. You've then got to change out your lovely warm clothes into your swimming stuff. You've then got to get from...
00:27:09
Speaker
poolside into pool you've got to follow all the the instructions through the session and then you got to get out when it's really cold and get changed and get back that's there are so many transitions in that and transitions can be really hard so yeah even I think this is the hard thing with PDA is is that even when something is enjoyable and it's something that piques their interest, there is a chance that those demands are still too big. And I think that's how sometimes we try and figure out, obviously we're not diagnosticians, but it's how we try and figure out if someone may have PDA tendencies. It's whether they struggle the things they enjoy as well, because I think that struggle to even do the things they enjoy is quite a a telling thing. So, yeah, it is, isn't it? It it it is sort of what' one of the things, isn't it, that sort of distinguishes PDA demand avoidance from other forms of demand avoidance is that it is avoidance of things that they actually want to do. um and a lot of that then is there's expectation that comes involved I know um sort of a colleague of mine when we're delivering training often talks about her son who showed a little bit of interest in karate he went a couple of times really enjoyed it so she thought right I'm gonna buy him the kit she bought the kit and he never went again because suddenly that kit was yeah yeah you're going yeah absolutely I think we definitely find that novelty is quite good um
00:28:30
Speaker
which might mean trying lots of different groups but maybe not sticking with them um but leisure i saw you know i've talked a lot about group leisure and active leisure haven't i but leisure isn't just that leisure is also doing things quietly at home so you know arts crafts gaming i mean so many gamers but yeah that is great and that's an area of enjoyment but it's also an area where you can switch off as well so you know there are there are pros to leisure as well I think a lot of parents worry about the amount of screen time that their kids are having um there's varying research out there about it but again if it's needed and if it helps and if it helps keep someone regulated then actually I'm kind of all for it at times as well yeah yeah no I took I totally agree with that my my PDA is regulating activity his he looks at photographs on his phone Or he watches certain programmes on his iPad. And I think it's more the theme music he likes. It's calming for him because he keeps repeating the theme music.
00:29:24
Speaker
But actually, if he's doing that for a couple of hours after school, when he can't engage with talk with me because that's too demanding after he's got a he's got to decompress after school, that's fine.
00:29:36
Speaker
I haven't got a problem with that at all. And if he's doing it just before bed, it's relaxing him. So it helps him, that actually helps him go to sleep. it If I take his phone off him or his iPad off him, that sleep is much further away. Absolutely. Yeah.
00:29:51
Speaker
but If it's what they need, then yeah. yeah But again, that's that that's that parenting expectations thing, isn't it? Because many parents will struggle with, I guess they will feel they're giving in um And that's that's tricky again. i just that Yeah. Yeah.
00:30:08
Speaker
OK, so to round off this first half then. So for any professionals that are listening also work with PDA children, what general principles do you personally keep in mind when you're working with a PDA child?
Professional Principles for Working with PDA
00:30:24
Speaker
I think my biggest one is being flexible and that need to build that relationship. Um, you know, I, I think that's probably the biggest part. If I hear that I'm going work with PDA, yeah um, I think affirming neurodiversity is really important. Um, focusing on understanding and acceptance rather than, you know, you're wrong and that kind of thing. Um, having that individualized approach. So, you know, tailoring to interests, strengths and needs, um,
00:30:49
Speaker
involving that young person the family and decision making as well, really, really important. um anything that we do has to be low demand and collaborative because there is no point in otherwise. I'm still learning when it comes to reducing direct demand. So it's kind of like, you know, I wonder and things like that, isn't it? In the hope that someone may follow over through and do something and using humor and being stupid sometimes helps as well. um Flexibility, definitely, you know, my session doesn't go as planned. Oh, well, it's fine. um I will still learn stuff about that young person and we will still move forward in our relationship. uh absolutely avoiding any power struggles so like we are equals and that's cool and generally treat them ah like an adult works really well um kind of like expecting and respecting refusals or negotiation like that's fine um again like lose the hierarchy and it's all right um
00:31:45
Speaker
I guess being really mindful of sensory needs and emotional regulation is vital. You know, if I have a young person who is, if I can see they are not regulated, I am not going to do the things i was going to do with them. I will adapt and make sure that they are okay, because actually that that regulation and that safety is the most important part. um And I think the other things are just supporting caregivers and that advocacy and education for others. So be it signposting, devising bespoke training, really annoying local authorities and schools, you know, that's what we need to do sometimes to help these kids get their needs met. And if we can see their needs being met, we can then see their caregivers breathing a sigh of relief sometimes as well that they're actually being heard and supported. So I suppose there are a lot of key principles that I would follow. And i I think that works for all professionals, to be honest. I don't think, you know, that's not occupational therapy specific. It's like, I think if all professionals can take that kind of approach and
00:32:40
Speaker
You know, I think the biggest thing is understand that these kids are not doing things to annoy you. It's not a choice. Yeah, exactly. Yeah. Yeah. So, you know, I think that's the biggest basis of it is kind of like listen and learn and be open rather than having a fixed mindset on the way in.
00:32:56
Speaker
And I think that works quite well. That's brilliant. Oh, thank you so much. Thank you. You've shared some really valuable insight there. And and I'm sure our listeners will have found a lot benefit in that. So thank you so much. We really do appreciate that. um If today's conversation has resonated with you at all, then please remember, you know you're not alone and there's lots of support out there for you. You can find more resources and guides and community support on the PDA Society website and on our training hub. And we've linked all of that information in the show notes.
00:33:27
Speaker
And likewise, if you'd like to find out more about occupational therapy and how that can support your child and your family, um or you'd like to find out more about um helping kids shine um and the work that they carry out, then we've linked all of that information in the show notes also.
00:33:43
Speaker
um If you found this episode helpful, then please do share it with somebody else that might benefit. And don't forget to subscribe so that you can and don't miss out on any future conversations.
00:33:55
Speaker
um Also, don't forget that we've got the second part of our podcast with Briar, our deeper dive section. and where we'll go into some more specific and answering questions that our subscribers have sent in. So please have a look at our training hub for that one. and So all that's left for me to say is thanks ah once again, Briar. I hope you've enjoyed it today and and we really do appreciate you coming along. Thank you very much. It's lovely to be invited.
00:34:20
Speaker
And thank you also to our our listeners for tuning in. And until next time, take care of yourselves and each other. Thank you. So if you want to hear more from today's special guest, then there is a longer version of this podcast available over on our training hub.
00:34:36
Speaker
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00:34:50
Speaker
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