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Parenting as a PDAer
701 Plays1 month ago
In this episode, Rachel from the PDA Society is joined by Riko Ryuki to explore what it is like parenting as a PDAer.
Riko shares openly about raising three children, two of whom have PDA profiles, while navigating their own PDA and additional disabilities. Together, Rachel and Riko discuss how parenting can look and feel different when you also experience high demand sensitivity yourself.
The conversation explores the realities of everyday family life, including adapting routines to meet individual needs, responding flexibly rather than rigidly, and understanding that even children with the same profile can require very different approaches. Riko reflects on being more child-led, matching expectations to capacity, and resisting more traditional “because I said so” parenting models.
Part 1 focuses on lived experience, connection and reframing. Riko speaks about the strengths that can come from shared understanding, the moments of joy and closeness that can emerge when anxiety is managed well, and some of the misconceptions they have encountered from others about parenting differently.
Key Themes
- Parenting with a PDA profile
- Being child-led and adapting to fluctuating needs
- Raising multiple neurodivergent children with different support requirements
- Misconceptions about flexible parenting approaches
- The strengths and connection that can come from shared neurodivergence
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 Training: https://www.pdasociety.org.uk/support-and-training/training/
- PDA Society Support Service: https://www.pdasociety.org.uk/support-and-training/support/
Guest’s links:
Recommended
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.
Parenting as a PDA-er
00:00:24
Speaker
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.
00:00:39
Speaker
Hello, my name is Rachel and I'm your host for this podcast. Today we're exploring a really important topic, what it's like parenting as a PDA-er. For many people, parenting comes with challenges, but when you're a parent who has a PDA profile yourself, those challenges and strengths can look very different.
00:00:58
Speaker
We'll be talking about everyday realities, the strategies that actually help and the ways parenting can also lead to new self-understanding.
Rico Ryuki's Parenting Journey
00:01:06
Speaker
So I'm pleased to be joined today by Rico Ryuki, who kindly is sharing their experiences with us. So welcome Rico. Would you like to say a few words about yourself?
00:01:17
Speaker
Hi, and yeah, I'm Rico. I'm a PDA. yeah I've got three kids. ah My two oldest are PDA and my youngest isn't. I do some writing and other stuff.
00:01:32
Speaker
That's basically just me. Fab, brilliant. Oh, that's great. So maybe a good place to start then and is just telling us a little bit about your um your parenting journey as and a PDA. How has that journey gone for you? Has it been smooth? Has it been bumpy? Yeah.
00:01:53
Speaker
how's it how's it been um it's definitely been eventful yeah um so obviously when i had my um eldest child i didn't know about pda um i didn't find out about pda until she was about uh seven or eight um so for the first few years um i was a single parent so i struggled quite a bit um i it wasn't too bad until she got into school and then things got really, really bad. Um, and I was trying all the, like, you know, the super nanny techniques, which just made things worse rather than better. Um, and all the like parenting things that you usually expect and they just weren't helping at all. Um, um,
00:02:34
Speaker
And then around that time, I ended up with my ex-partner and then I had two more kids. um And it was around that time that a few years after that, I discovered about PDA and I realized that why all the techniques I'd used before weren't working. And so I started trying to change things and I did find that it made it a lot easier. And then after I separated from my ex, I went like full in. using the PDA techniques and that made a massive difference. One of the things that helped was like, even though my eldest had struggled a lot and there was a bit of trauma around that, obviously because like the techniques weren't helpful, I was able to
00:03:18
Speaker
use the PDA techniques um with my middle child when he was about two or three. So that's made a massive difference with him. And I've been able to see like the differences in like using that the right supports from an earlier age. Yeah, yeah, yeah. And yes, as you say, it's it's it's the earlier that we can use the right strategies and techniques, isn't it, is that has a greater impact then, doesn't it? So you've had that, that that as you say, that bit of a journey that you've been on is is sort of with with with the children. So, you know, sort of being a PDA is yourself, what what?
Understanding Children's Behaviors through PDA
00:03:53
Speaker
And therefore you but you'd be able to have, you know, recognise more than, um you know, I've got, you know, I'm a parent of a PDA myself, but I'm not PDA myself. So I guess that being a PDA yourself, does that give you that more insight into what difficulties and challenges and strengths that your children have maybe?
00:04:15
Speaker
I think it does, yeah, because sometimes when my kids ah act to a certain way, people will be like, oh, they're saying they're doing it because of this. And then I know that that's wrong.
00:04:26
Speaker
and ah before I knew about PDA, might not have been able to express why I knew it was wrong. it it was just like some kind of instinctive, that doesn't fit. and But now that I know about PDA, I'm able to understand a lot better why it is that that's wrong.
00:04:41
Speaker
And like my instincts were correct. And so I was able to put things in place a lot better and understand my kids a lot easier because I think in some way I could relate to what they were feeling. And that helped me see it from their perspective. Whereas people who aren't PDA, they're just presuming and the reason behind the kids' behavior is because of either like preconceived notions that they've got around like how kids behave or just the basing it off like how they think they would behave in similar situation without understanding that our brains literally work differently yeah yeah exactly yeah and it and it's And I think that's one of the biggest key things. I know what certainly was in my parenting journey with my PDA is actually recognising, okay, how I would process information isn't necessarily the same way that he's going to process information. And actually, I need to understand it from his point of view as well. And I i guess, therefore, then, that there are you've probably come across then these, you know, sort of lots of misconceptions that people have about
00:05:46
Speaker
i PDAs as parents, have there are other there hadt been any sort of major battles that you've had to overcome yourself because you parent in a different way, because you're meeting the needs of your child and have other people maybe outside the family or within the family that have sort of and not particularly understood why you do it that way?
Facing Misconceptions and Emphasizing Flexibility
00:06:09
Speaker
So are there any misconceptions from other people that you've had to overcome in that process?
00:06:15
Speaker
um I think so, yeah. It's hard to put into words, especially because it's like it's not more lots of little things rather than a big overall thing. yeah and Stuff like, or they need lots of like rigid structure and routine and stuff. And then when you try and explain that they do have structure, they're not lacking in like routine and stuff.
00:06:35
Speaker
yeah I'm told that, no, that's... it's still not structured routine and then I'm left confused being like what are you on about because to my eyes they've got that um but to them they're saying no you don't have that and I was like what yeah yeah yeah I think yeah it's it's difficult isn't it because we know that you know that um our children need that bit of flexibility but as you say they also there is routine there it's just that that routine's a bit flexible isn't it maybe more flexible than
00:07:07
Speaker
other people might realise but that's what the children need isn't it that's what our kids need. I think part of it might be as well because I'm more like child-led in that I match the routines that we have to their needs and I'm willing to adapt whereas a lot of neurotypical parents with neurotypical kids might be like this is where I'm saying we're doing it you fit in otherwise you get into trouble And it could be that disconnect between that. They think like, oh, I'm not in charge. I'm not the one putting down the rules. The kids don't have that structure when actually that's not structure. That's just control. Yeah. Yeah, you're right. Yeah. And I suppose, yeah, because that that is, you know, traditional parenting, isn't it? It's, ah you know, I'm the parent. You do what I say. You're the child. But so I guess really the...
00:07:55
Speaker
the being um a pda yeah as a parent then actually you're you've got far more insight into your children and but you've also got your you're coming at it from the approach of the that actually there's a lot more balance in your household would you say that there's probably more balance that goes on in your household than in the average household between yourself and and the children i think so um I think in some ways more like um a lot of autonomy and flexibility. um
00:08:32
Speaker
i think my kids understand like if they need something from me that they might have to wait because i need to manage my own demand avoidance. and And then the same back, it's about having that respect of like, if I ask them to do something,
00:08:46
Speaker
I need to expect that they might not be able to do it or I might have to wait for them to do it. And it's the same backwards. I'm helping them understand that if they ask me to do something, I might not be able to do it straight away, but will try my best to do it some point. yeah have yeah It's about having that flexibility and understanding that like and it's not about controlling fighting battles and stuff. It's more about finding a way of living together harmoniously.
00:09:15
Speaker
Yeah, oh that yeah i mean, that's great, isn't it it's it? It's offering both sides, you know, the child and the parent, those time to process, time to just, you know, as you say, overcome your own the the demands that have been put upon you to process those so that you can do what you need to do. And then the child, the children do what they need to do, which it which is great, isn't it? And that's that that's it's nice to have that equal balance on each you know each side or equal and you know empathy, I suppose, for for what each, you know, each of you, understanding that each needs and that process in time.
Strengths and Struggles in PDA Parenting
00:09:49
Speaker
So, would you, has highlight, has parenting then highlighted any strengths that you have as a PDA? ah Have, have since being a parent, have you noticed this, more of the strengths that you have as a PDA? yeah
00:10:06
Speaker
um I think so. um I'm not sure if it's like, you just because of my disabilities or because of like my personality. I'm a pretty easygoing person. I'm quite good at putting up with a lot of things. yeah Like one time, had to wait for four hours in the train station and first thing in the morning. yeah like Most people would have been driven crazy by that, but like i can put up with a lot. So when it comes to like my kids, their needs or when they're like kicking off or something like that, um I'm able to
00:10:42
Speaker
manage that a lot better than other people would they might get frustrated and they might really struggle um they might try and get control whereas i'm quite easy going and like i can just put up with it yeah yeah yeah and also i suppose you know you've got that understanding as well of you you've got that understanding that you know where where those behaviors and those needs are coming from haven't yeah yeah yeah that's great um has highlighted like um my strengths, but it's also highlighted, I think, my weaknesses as well with my own PDA and that. and Some things that i really struggle with when it comes to parenting. and
00:11:22
Speaker
And then, like, trying to, like, match the strengths and weaknesses so that it's not as bad. Yeah, yeah, yeah. And, yeah, and I... I suppose it's about self-awareness as well, isn't it? It's, you know, sort of we all have our own strengths and weaknesses, that the things that we're good at, things that we're not so good at, but if we' we're aware of them, then that's important. And I think very often a lot of parents aren't aware necessarily of what their weaknesses are. ah and yeah but it's sake of it But you are very in tune with what you know what where your strengths and weaknesses are and therefore...
00:11:57
Speaker
that's good for your kids as well, isn't it? You know, that's good as a parent because you're also role modeling then as well, I suppose, aren't you? You know, you're role modeling to your kids that it's okay to have weaknesses. That's all right. You know, everybody does, so that's okay.
00:12:12
Speaker
Okay, so we touched a little bit a little bit on it about balancing your needs with your child with your child's needs. and You mentioned about that that you give each other a bit of space to process demands. Are there any other strategies that you could advise other parents who are PDAs about how will you balance your needs and chill your children's needs?
00:12:38
Speaker
um i It's about like finding what works for your individual family. um i find like we all have our own spaces. We all um like have certain areas in the house that we retreat to. and That helps. and Because of like my other disabilities, I've got chronic fatigue, and so I need a lot of rest.
00:13:01
Speaker
And I found I'm able to have a nap while I'm in the same room as the kids. and they're kind of used to it, they know they can easily wake me up, i'm I'm like, I will be awake enough to like listen to them and stuff. and But they do know that I'm like, I need that time to rest or otherwise I'm not going to be able to function.
00:13:21
Speaker
And I think some of it's just like practice and like getting used to that each other's floor and how things work. and being respectful and stuff. Like my middle child needs a lot of like sensory input. needs a lot of, and he loves people. He loves talking to people. He loves communicating.
00:13:39
Speaker
as you He does struggle if he doesn't have that. Whereas I'm more like I could go weeks without speaking to people and I'd be fine. Just trying to make sure that he's got enough of my attention so then when I do need to rest, he's not feeling neglected.
00:13:54
Speaker
So then it's like managing that and finding ways to like meet his needs so I can be mine. Yeah, yeah, yeah. and i think The key that you said there then is about it's about awareness then really, isn't it? It's about awareness of each other's needs and that actually your children's needs might not be necessarily the same as your needs, exactly as you described then about that you can go for weeks without speaking to people, but your child needs a lot of of that social interaction and recognising that that you know but we're all different and we've got to be able to provide opportunities to meet those needs. so
00:14:29
Speaker
Yeah, it's about that awareness and full understanding, isn't it, of what each other needs so that you can have that happy, respectful household, which
Support Systems and Community Involvement
00:14:37
Speaker
is amazing. Brilliant. So as your as you've gone through sort of your years of parenting then, how has sort of that role of of the community or community friendship support or peer support how much has that helped you as a PDA parent do you rely on sort of the community and friendship and support or support of the wider family a lot
00:15:03
Speaker
Um, probably not very much. Um, a lot of people do struggle to understand PDA. Um, I usually just say like my kid's autistic. Um, and then even then, like a lot of them don't have full understanding. Um, I have found like there are some parents around here are that, uh, also have PDA kids or suspect that media kids and and that can be helpful but obviously that they're quite busy with their own lives and managing their kids needs and stuff so it is quite difficult especially when like you've got disabilities and your kids have got disabilities to like have connections and things with people um I don't have much family either but um I've got my brother and he's really really good uh he's doing his best to understand obviously sometimes he does use the wrong like uh way of managing um but then he's willing to learn and I think that helps um I think he's he did as well so around yeah yeah yeah this is true this is true yeah and think yeah I think you're right in it is that
00:16:07
Speaker
It's that understanding from others that actually that's really hard to get sometimes, isn't it? from From sort of, you know, people that don't live it day in, day out, hour by hour. It's really difficult to get across the all the challenges and the extra layer of things that demand avoidance puts into a family, isn't it? And because you know because you're you're in it every day you understand your kids brilliantly but actually count and getting others to understand it's really hard i yeah I get a little bit of that as well and it's it's it's great because you've got you know if there are people in the community that want to help like your brother but actually and if they're willing to learn then that that's brilliant isn't it because we do I think as all parents we do need to lean on other people sometimes as well don't we
00:16:55
Speaker
Yeah. I think it helps that I've got lucky with schools and that they're willing to help and they're quite good. Otherwise it'd be far much more of a struggle. yeah and i mean, I have been through, I was home educating my kids and we had social services involved for other reasons. And there was a big push to put the kids back in school, which wasn't helpful at the time. and I mean, it worked out okay, but like them not understanding like my kids needs,
00:17:22
Speaker
And then being so focused on like numbers and stuff, getting kids into school as much as they can, and it it didn't help. And it was actually causing more problems for us rather than helping, which is what they should have been doing. and yeah i mean, it works out in the end, thankfully, but like not everybody's had that good end result. A lot of people have ended up like um having harm done to them because they're just not given the right services that they need and stuff.
00:17:50
Speaker
So it can be quite difficult. Yeah, yeah. And then and how then do you try to explain um as a parent the needs of your PDA children to professionals, whether that but you know you mentioned school there, that school are quite ah you know helpful for you and on board. So how did you explain how have you managed over the years then? to explain, right, okay, this these are the needs of my children, but also when you're speaking to me, these are my needs as well. How have you managed to communicate that to educational professionals, for example?
00:18:26
Speaker
um It's only recently that I've been able to communicate my own needs. In the past, I'd like put them to one side and be more focused on the kids' needs. and But I found like as things like my memory's causing problems, I've had to like explain to professionals, you're going to need text me because I can't remember things and I'm not going to make appointments if you don't give me some kind of written information.
00:18:50
Speaker
um And they have been mostly okay with that, thankfully. and When it comes to my kids, I found a mix. You sort of have to judge whether you think that they'll be receptive to it and and like just tenderly put out, oh, I think they might be PDA and see how they react.
00:19:08
Speaker
and I've had some favorable responses. I've had schools actually buy books on PDA. Unfortunately, they've found that they still don't seem to understand and they still use the wrong techniques. and Like, well, you've literally got a book and you still get it wrong, but like...
00:19:23
Speaker
as Yeah, it it can take a while sometimes, can't it? it's yeah Yeah, and some of them I've found it's a lot easier if you just explain what your kid needs and just say like, oh, they're autistic, every kid's different, and my kid needs this, that and the other. They're far more receptive to it. um okay There seem to be like a lot of If you explain exactly what the kid needs and why, they're more likely to understand it. Whereas if you say like, oh, my kid's PDA.
00:19:50
Speaker
Yeah. the the have to They have to think and they're not wanting to think. Yes, yes. It's the time, isn't it? It's that time and space to think. Yeah.
00:20:00
Speaker
Yeah, I guess you're right. I haven't thought about it like that, actually. If if what you've got yeah if we say that our kids are PDA, then we are assuming the person the professional that we're talking to understands everything about PDA a to the level that we do. But why would they? Because they don't live it like we live it.
00:20:19
Speaker
Whereas, yeah, that's really good idea, is if you explain they're autistic and these are their needs, then actually your identity you're you're almost like doing the work for them. You're identifying, right, this is what they need, so put it in place, please. But yeah, that's that's a really good tip, I think. Yeah, that's great. I think part of that
Communication and Descriptions of PDA
00:20:40
Speaker
comes as well because I've got two PDA kids, but they're different to each other that they have different needs. So if I just said, or the PDA, they'd be using the wrong...
00:20:50
Speaker
supports with the wrong kid and that wouldn't work. and So sometimes you do have to actually explain it. And then I have had, I had one professional who said they did PDA training and they spent like half an hour with my kid and said, oh, I don't think they are PDA because they used PDA technique on them and it didn't work.
00:21:09
Speaker
Like, right so that's not how it works. No, not at all. No, no, no. And I, you know, as yeah, as we often say, um when we deliver our training courses, you know, PDA itself is a bit of a spectrum as well, isn't it? As you, if you've got two PDA kids that are very different and my PDA here is probably a very different to yours again, then, you know, that it's, we've got to look at individual needs of me and that and explaining that to professionals. it's butit If we keep it focused based on the need, then and we've got more chance of them, as you say, taking it on board. So what about with...
00:21:45
Speaker
With sort of friends then, how do you, you mentioned before that you just sort of say that they're autistic rather than PDA. it is Was that because of the lack of understanding of PDA and you think that they'll understand autism a little bit better or how do you explain? Sometimes it's avoiding the demand of having to explain it.
00:22:06
Speaker
Yes. Yeah. Socialising has got exhausting. And if you just say, oh, my kid's autistic, they're like, all right. And if you say my kid's PD, and then they're like, what's PD? And then you have to explain it. And then like, oh, where can I get more information? You just can't remember that sometimes. Yeah, that's true, actually. And I i actually...
00:22:26
Speaker
I'm self-reflecting and that's exactly what I do and I hadn't realised I do it. But yeah, I say he's autistic rather than he's PDA because it's just easier, isn't it? yeah people People generally understand a little bit more, but so yeah, yeah, yeah, no, it's interesting. Okay, so m what moments of joy or connection stand out for you in your parenting journey then as ah as ah as a PDA yourself, parenting PDA children,
00:22:58
Speaker
what Are there any moments that you could describe to us or situations that have happened that actually, knowing that you you know that that because you are both PDA, that actually that's provided these moments of happiness or whatever it might be, your connection, particularly with your children?
Humor and Connection in Parenting
00:23:18
Speaker
um I think humour is quite a big one, especially the way we connect with humour. With my oldest, one of the ways I used to be able to get her to school was we made fun of the school and the teachers. So we'd be like, oh, that teacher's really stupid. I can't believe they're telling you this. It's ridiculous. Can they not get proper teachers in? LAUGHTER Yeah, yeah, And if like outsiders heard that, they'd be like, how why are you teaching your child to be mean about the teachers? They need to respect them. But actually, it's working. And it's like providing like its way of communicating, socialising and spending time together. Especially like if you've got a kid that doesn't like spending time with other people very much, it's a good way of... like and
00:24:03
Speaker
getting to know them and stuff and everyone with my middle child we started putting the middle finger up at each other and now like I've been a bit self-aware of how often we're doing it because we might start doing outside and people will be like oh my god you're swearing at your kid and they're like well it's just what we do it's funny yeah Yeah, it's like I suppose it's like having those little moments that you both understand what's going on, but an observer from outside, they wouldn't and they wouldn't know what that communication means. But yeah it's those little, yeah, those connection moments, isn't it? That actually that, as you say, it builds the connection, it builds their sociability and it's it's it it helps them feel safe, doesn't it?
00:24:51
Speaker
Yeah. Yeah. And as we know, that's really, really important for our PDA kids. Oh, gosh, we've yeah, we've um dug into quite a a bit there. So I think we we're coming to the end of our and the first part of this m episode. So thank you very much for that.
Conclusion and Resources
00:25:08
Speaker
And if you want to hear more from Rico on this topic, you can find links to their blog in our show notes. We do also have a Deeper Dive podcast where Rico goes into more detail on specific issues for us, which are available on our training hub via subscription. And we'll put the link to that in the show notes as well.
00:25:27
Speaker
subscribers ah of our training hub make it possible for us to create and put out this podcast for everyone for free so as a thank you they get the all the free access to all the recordings and the self-guided training on the hub so thank you subscribers for your generosity if you'd like to become a subscriber there's a link in the show notes as well so all that's left for me to say is thanks rico again and for joining us today and to all our listeners on the pda societies podcast we hope you enjoyed the episode and if you found it helpful don't forget to subscribe and save.
00:26:01
Speaker
ah For more support, resources and information visit the PDA Society's website at www.pdasociety.org.uk and I look forward to seeing everybody next time. 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.
00:26:21
Speaker
Sponsors of our training hub make it possible for us to create and put out this podcast for everyone for free. As a thank you, they get free access to all recordings and self-guided training on our training hub. Thank you, subscribers, for your generosity.
00:26:35
Speaker
If you'd like to become a subscriber, there's a link in our show notes.