Transcript
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.
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, a family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
Speaker: Hello, I'm Ed, I'm the CEO of the PDA Society. And today I'm going to be talking with H about what being a PDA is like and their experience of kind of support that's actually helpful.
Speaker: Hi H, would you like to introduce yourself? Hi, I'm H. Arlo Harris. My pronouns are they, them. For anybody that needs audio description, um i am a mixed race person um with medium length, curly black hair. and we're wearing a black shirt and a silver chain um and I'm sitting in an office chair.
Speaker: am a teacher, been an autism and just particularly autism and PDA teacher for about 10 years.
Speaker: oh And I'm also a PDA myself. Lovely stuff. ah Good point on the old visual description. I'm wearing a pair of oversized green glasses and a purple top.
Speaker: And I've got kind of very scruffy brown hair. And you can see a really cool painting next to me that my son painted. Cool.
Speaker: Right. ah My first question is this one. How did you find out that you were a PDA? Like, when did you know? um and can you tell us a little bit, a bit about how PDA just feels to you on a daily basis? It actually sounds like, like we've teed this up to be ah plug for the PDA Society, but I genuinely,
Speaker: um ah genuinely don't mean it to be but I found out about PDA from the PDA Society website. I think it was the booklet, what is PDA, that I looked on. I think for me, i I'd never felt autistic enough.
Speaker: Like I never felt like a properly fitted the autistic criteria, as as although I had a diagnosis of of autism spectrum disorder, i never felt like it really summed it up.
Speaker: And I was struggling to find any material or um information that really accurately reflected my experiences oh of autism.
Speaker: um And I don't really know how I ended up on the PDA Society website, if I'm honest. I mean, I imagine i'd heard ah discussion around it.
Speaker: um And I was probably looking in, I think at the time I was really struggling with anxiety. um And I think that probably just led me to Googling something around autism and anxiety that brought me onto the PDA Society website. And I remember reading this,
Speaker: There's like a word cloud and I don't know if you've updated it. I probably should have looked before I spoke about it, but there used to be a word cloud that was like the positive aspects of PDA. um And it was like tenacity and loyalty and and things. And I looked at- Yeah, really strong sense of justice. Yes.
Speaker: Yeah, yeah, yeah. And I was like, oh my gosh, that is me. Because I never felt like I had that, like, oh my gosh, that is me in relation to ASD. I mean, I was younger, sort of like my late teens.
Speaker: And obviously you're presented of lots of stuff and I was just like, like not, that's not all the way it. And I remember reading it and then being like, yeah, this is, this is me. This is, this is definitely where this, this was, that was the first thing that I think I really read that really aligned with, with my experience of being autistic.
Speaker: Um, ah cor because you'd you'd known that you were autistic from being a teenager yeah and i think i would have been maybe 20 20 maybe 24 25 like when i sort of came across that and then you know had the conversation then with consultant at the time and they were like yeah because it was you know knowledge ever-changing
Speaker: You know, and I still I think this is still true to today. The experience that you get is only as as far as the consultant that treats you.
Speaker: i With not having a diagnostic criteria. yeah It's not a widespread thing. So if the consultant that is is working with you at the time knows about PDA and understands about PDA and is always open minded, then you get that. They are they can impart that knowledge on you. But if they if they don't have it, then it for you, it doesn't exist.
Speaker: Yeah, that's really helpful, actually, because people listening to this podcast, some of them will be PDAs themselves and they'll be like, yeah, I really get what this is. And others might be ah people coming to a PDA for the first time. yeah So from your perspective as a PDA, ah could you explain what PDA is to you and kind of how it impacts upon you, like everyday kind of ways?
Speaker: and So I think for me, like the way visualise my experience, is that it is autism, it's being autistic and it's it is, like they are the same.
Speaker: i think but that's for me, like everybody sees the themselves in different way. Like ah almost like I have that flavor that is PDA, do you know i mean?
Speaker: i think to me, it's about... think balance is probably the word that comes to mind often. and I was chatting with somebody the other other day and i said it's like um
Speaker: rigid flexibility. So that the idea of having like a routine that runs every day from nine till five and you do this followed by this followed by this and might be able to do it for one day, maybe two and then at that point, i I just will want to throw things at the wall.
Speaker: Like it it it it has to be, it has to functionally serve the purpose in that moment. But as soon as there is a lack of flexibility in things that makes it difficult.
Speaker: um I would say, you know, it's sort of categorised by...
Speaker: resistance sounds like a very loaded term, really. um But I would say to give it a visual, almost like if you were to play whack-a-mole,
Speaker: um
Speaker: And the demands are moles. um Sometimes they're like dragons rather than moles. Like fire. Really aggressive. Really aggressive fire breathing dragons that like come all the way out of the the thing rather than rather than these like cute little humps that you've got to knock down to get through the the game. It's more like it feels like a fire breathing dragon, even if perceptually it is a mole.
Speaker: Yeah. and And I think it's for me it very much is about like balancing how much I'm pairing. And um I think, yeah, the biggest thing I can say it's about, it's about for always finding the balance between how much is too much.
Speaker: um And it's a constant, I would say a almost like a constant
Speaker: discovery process because no two things are the same. So somebody might look and be like, well, we did something similar to that the other week, but it's not the same. and Or I didn't feel the same. And those demands can come both externally and internally.
Speaker: But I suppose fundamentally it's characterized by how demands feel perceived and cause the body to respond. Yeah.
Speaker: So if I'm just, because what we know is that um some people, when I kind of say work for PDA Society, will say something along the lines of, oh, just people who don't like being told what to do.
Speaker: Nobody likes being told what to do. And I'm like, um no, that's not fair. Ironically, I am really good at being told what to do when I permit it.
Speaker: Yeah. When I'm like, I don't know what I'm doing, tell me what to do. Yeah. But if you're like, if it's so much more than that, yeah you know, it's the internal demand. I would say internal demands for me are extremely more difficult than any external demand anybody could put on me. Now, as an a adult, like, I don't have many external demands.
Speaker: No, it's very true. As an adult, I get to control the majority of the time what I do, where I go, how I do it, what i eat, when I do it. Um... As a child or young person, i was they caused me a lot of ah lot of issues because it was constant.
Speaker: So what's an internal demand? um Being on time. You're on time today. i Which is somewhat extra as well because the the clock puts a demand on you.
Speaker: um Eating, drinking... cleaning your house, starting a task, finishing the task, um showering,
Speaker: and gosh, doing the food shopping, um And I think that the the thing is, it's it's that the pain of the past doesn't outweigh the, you know, the action.
Speaker: It doesn't necessarily stimulate an action because people will be like, well, no food and you didn't anything breakfast, then you wouldn't let yourself be in that position again. But that's that's from that's coming from a logical position.
Speaker: and well when it's When it's around demand avoidance, it's about like, you know, I, ah for me, I always look at it in terms of the micro demand. So before I can go shopping, I've got to write a list.
Speaker: Before I can write the list, I've got to finish what I'm doing and go into the kitchen and look at what I've got. And then not only, and one of the biggest things I hate about food shopping, I'm just going a bit a tangent here, is when you've got some of the stuff, but not all of the stuff, because that's, then I've got to work out What else I need to add to something? I find it much easier when there's nothing in the cupboards, nothing in the fridge, and I've just got to go buy it all because I haven't got any this additional step to work out.
Speaker: What have you already got in? and And it isn't, you know, and I think when people say that whole like, oh, it's people that don't like do what they're told. No one's told me. Like no one's told me. And the only reason that we're talking about is because we're talking about it because we know and we understand it. Because the other thing is well, just get on with it then. Just do it. And it's didn't, I'm not telling you this for your approval. I'm telling you because you asked.
Speaker: Yeah. um And, you know, and then there's that connotation that, you're just lazy. You know, it it it's, it's, it's, it's just laziness. Yeah. But and it's not just laziness, is it? Because you feel it in your body. That's something you said earlier.
Speaker: Yeah, 100%. I wonder if, because as you know, I'm neurodivergent, but I'm not a PDA-er. So I don't feel demands in my body in the way that you do. do you reckon you could describe it for me?
Speaker: Like a heaviness. Like such a deep, you know, like when you're really tired. Yeah. And you're like, I actually don't think I could get up off the sofa.
Speaker: ah her it's like that except not necessarily linked to tiredness it's like this deep resistance like you've turned to concrete or you've yeah completely frozen yeah like literally like the weight of it is so heavy yeah I mean lots of kids something that like I've heard from so many parents is kids saying my legs don't work And 100% meaning my legs don't work.
Speaker: Like they won't do this thing for me. um
Speaker: And yet, I guess from a an external perspective, the perspective you're like, well, you walked over to that sofa. yeah And in a minute, you're going to wander over and get that thing over there that you need. You just don't have the, you just can't do this thing.
Speaker: Yeah, like breaks, like almost at the breaks. and And I think that's another quite good analogy is that like the breaks. And I think I feel that most when it's like, I feel the breaks more when it's external, especially if I'm already going to do it.
Speaker: it's just like no no stop telling me what to do because i'm worried already going to do it stop it yeah you're making it harder yeah yeah yeah but definitely when it's like i've got to go and do that thing it's very like that getting over that hump to to which is that first demand it's the demand the first demand that i was found the hardest demand not Not always, not necessarily, but for me, especially when it's chained, when it's ah something that's got multiple steps, that first bit, getting that laptop out for the first time, getting the hoover out, getting up and getting the hoover out is the hardest part of that chain for me.
Speaker: Yeah, it's really useful.
Speaker: So one of the things I get asked all the time um by parents and by teenagers is about
Speaker: ah happy and successful adult PDA lives.
Speaker: When I think about them and when I think about people who I think to an extent are like, oh yeah, they they've kind of got it sorted. They've worked out a system that works for them. I often think of you ah because you're someone who just such a good communicator. And so whenever we talk, I'm like, oh yeah, I've really got that thing and this thing.
Speaker: um But it's not easy, is it? It's no like your your you're thriving in a way, like it in a way that works for you. And I just wondered, what have you put in place for yourself?
Speaker: Like, what is it that kind of puts you in a place where you can be happy? ah enjoy your life yeah shamelessly my house is my own i live on my own have my dog um i have a partner and we spend time at their house very very occasionally we'll spend time at my house normally only if it works for something on a logistical geographical basis but my house is the pda palace like It's just me. It's just my space with my things in it.
Speaker: And I shut the door and it's my safety. Like it's my, it's mine. Yeah. That makes a massive difference. Having that like base to work off.
Speaker: And I know that nothing comes in and alters that. Yes, the art itself creates, you know, things but that's no different to any other space but I know i am the best version of myself when I have a private, a complete private space that is not shared that I don't have to do any thought compromising or or anything with, it's entirely mine and I think that makes a big, it's really important for my regulation, and it's really important for, because with that regulation,
Speaker: enables me to be ah better communicator. I need a lot of time and space and and regulation place to be able to communicate in the ways that I can communicate as much as I'd like to.
Speaker: and So I would say that is the biggest thing. and And I suppose within having a home is the freedom and the choice. and And I know that makes a lot of carers and PTAs quite anxious because it's like, but what choice will they choose?
Speaker: But for me, without that, I wouldn't have ever been able to be in the position that I'm in now. and
Speaker: I think.
Speaker: it you know I would say now it's much easier because it's it's quite autonomic. um To begin with, it was a lot of work and I needed a lot of... I needed to be able to direct people and tell them what I needed them to do for me rather than for them to decide what they needed to do for me.
Speaker: um You know, for me, I really struggle with interception. So like I, I can get a feeling and I had to work to get this, but I can sort of get a feeling that something doesn't feel right or, you know, it's not a very nice feeling or it's a good feeling, but I can't explain what that is.
Speaker: I can't label that. Maybe at all, but definitely not straight away. It can take me quite a while, like days, you know, sometimes longer to to be able to label feelings. So it's something that, but when I very first started, you know, i i remember saying to people around me, like, if you're getting a vibe, I need you to tell me what it is you're seeing.
Speaker: And then I will check in and realign those feelings. Like, and be like, oh, actually, no, i I, you know, I'm feeling like this, or actually, you know, I'm actually really hungry.
Speaker: and And and it' that is it i mean it is it that extreme? So you're like, I'm feeling something, and at the moment, I don't know whether it's a good thing or a bad thing or a physical need.
Speaker: Literally, yeah. It's just like something has come into the, like, the HQ. And I don't quite, and it takes a while for it to to filter. I think positive things are a little bit easier to discriminate, but it's and to discriminate between a physical need and a negative emotion quite difficult.
Speaker: Yeah. and And it can take much longer. and But that made a massive difference for me to be able to recognize and sort and filter my own emotions more so, so I could know how to respond to myself.
Speaker: You know, I see a lot of things and I know we're going to talk later about my professional work. I see a lot of EHC plans and things or IEPs or whatever we're using um that says like, X child must be able to communicate three feelings to an adult.
Speaker: um And I know I sound really condescending, but my follow up question is always why? Like, do we actually want that? Like, what what are we actually looking for? Like, is that so that they can ask for help?
Speaker: Or is that, because like, do they, do actually, is it about dealing with their own feelings and knowing what that feeling means and actually what they need to do for themselves and then doing it? Yeah.
Speaker: But with this generic target just gets written because it's like, oh, they find that difficult, so I'll write this target. And I'm like, that's fine. What are we actually trying to achieve though?
Speaker: yeah that because we to okay so we can say so so now what because if we can't accept the help from the adult because that's a demand actually for this young person is it actually about facilitating so that they can yeah can am i feeling fear or am i fearing feeling excitement and how does that help me make the next decision yeah yeah Not telling someone who can then tell me what to do with that, which is just you know so much harder. Exactly. Yeah. and
Speaker: But yeah, I think that for me was, was really important. And the irony being and is for me, it didn't come from me learning it to communicate it with others. It was me learning it to communicate it with myself.
Speaker: And then me, myself and I could make a decision about what, what the next step needed to be from that. Yeah.
Speaker: Okay. That's really helpful. So
Speaker: sorry, long pauses aren't great in a podcast, are they? That's all right. you can They're not, but they're they're necessary within my... What I was going to ask was how has what i was going to ask was
Speaker: how has
Speaker: PDA and your kind of ability to identify emotions within yourself. How's that affected your relationships?
Speaker: It's interesting because my partner always says like I'm the most effective communicator that she's ever met.
Speaker: She will always say because I have to just talk about it. Like like almost very matter of fact. um I think what I learned was so much communication is unspoken.
Speaker: Yes. And even people who think they talk a lot, they don't always say what they mean. Very often don't say what they mean. um
Speaker: And I recognize that sometimes people it's not very cool. Because it's not like, you know, it's not the way that you are meant to necessarily communicate in a romantic relationship. It's not.
Speaker: it but it But it's extremely effective. And it makes everybody feel safe. Yes. Because everybody knows what's going on. So although it can feel really odd to begin with to engage in it, because it's a bit like, okay, well, this is a bit stilted. This isn't how you communicate. It's not like, this isn't the way we...
Speaker: we communicate as human beings but then people do it and they're like, oh actually, you know what? Like, I know exactly where I stand now. Yes. And I find people over time really lean into it and then really like it and because it's really safe.
Speaker: um I would say in terms of my communication, my relationships with family rather. um Again improved. I think before I moved out of the family home, relationships were probably really quite tricky in the family home.
Speaker: um I moved out just after COVID, so I think it probably goes without saying that, you know, but it was tricky before. I'm not going to blame COVID um because that would be disingenuous.
Speaker: um But I think it's allowed me to know myself better and be more and intentional in what I say and how I say it.
Speaker: um
Speaker: And I think that's then left space. It's meant that sometimes where I would maybe have put emotions I put words.
Speaker: Yes. And that could be just holding, like holding a holding phrase or a ah holding moment. and But it's definitely enabled me to to use words and be braver in what I say. Because I i think as a society, especially as Brits, we we just don't say what we mean.
Speaker: but too We're too worried about someone else's feelings and not to say the thing. And then we have feelings about it. We don't then do anything about it. It then explodes. And we have this whole new situation, all these new feelings that aren't actually connected to the feeling.
Speaker: Like if we'd have spoken about our feelings honestly yes to begin with, we wouldn't be where we are. And I think definitely for me, as a PDA-er, like all of that gets tangled really quickly and it gets very confusing um and frustrating for me.
Speaker: Yeah, it's it's really, it's quite interesting. i um think about PDA society as a workplace and a workplace where, you know,
Speaker: massive chunk of our team are neurodivergent, a good number of our team are PDA-ers. um And ah
Speaker: that thing about clearly communicating actually means that like, we need to be maybe more explicit about some kind of rules and expectations than other workplaces in order that then everybody feels safe to kind of,
Speaker: freely play and freely explore within that. And so, you know, and ah we have flexible working. Yeah, people that flexible working is really bound, like that doesn't mean you have to work all the time. And in fact, we're going to try and check that you don't.
Speaker: And um yeah, and but that kind of explicitness is about safety. It's about not having loads of coded expectations.
Speaker: Sure. And I think it will feel quite unsafe to begin with because it's not the way that we are used to communicating and it's very open.
Speaker: Like if you are very vulnerable when you are communicating really openly and honestly and it takes time for you to be really comfortable with that.
Speaker: Yeah. And there's loads of other stuff at play, isn't there? Because alongside all of this, there's you know there's power imbalances, there's loads of different things that mean that um perhaps the way that you communicate when you're in like yeah your relationship ah is harder to replicate when you're in a job or when you're with your parents, yeah unless there's that like level of understanding. And how does that work for you in terms of people in your life who get PDA and the people who don't?
Speaker: but For me, I see all relationships as a relationship. Like, I try not to categorise my relationships. Obviously, like, there are different people that have different proximities, but i know for me as a PDA, as soon as it's like, this is this person and this is their role, like, I don't do very well with that. And I'm just like, well, you're a person in my life that I'm connected to.
Speaker: And this is how I feel about you and this is what we do together. Yeah.
Speaker: I think teaching people about me as opposed to trying to conceptually teach them PDA has been infinitely more successful.
Speaker: so theyre saying things like, if I'm already doing something, like wait X amount of time before reminding me, because if you remind me again, won't do it.
Speaker: yeah Just being really like straight to the point. The same way that we would if it was like, don't please don't put your hands on me from behind because i don't like it. yeah I think for people that don't understand it as well, and especially in new to anybody who is open about how they identify in any way, shape or form in their life, whether that's their neurodivergence, sexuality, their gender, their race, you know, there is a lot of resistance to that from certain groups within society. So especially with those people, it's easier to tell them what they can do yeah and what things mean. and
Speaker: rather than giving it a conceptual identity because it's just too far outside of their understanding. And then once I fuck want to find this, like they'll of be like, so you know this and this and this and this.
Speaker: Why is that a thing? And then that's for me when I deliver that information. Yeah. of Of the name of it. Because I think a lot of people really need to gauge more of an understanding of something before they can conceptualise it.
Speaker: and And it is so unique. Yeah. And at the end of the day, the only purpose in a name is to help people understand a person.
Speaker: Quickly. And help them understand quickly. It's to shorten the thinking. and I think I'm not afraid of saying it.
Speaker: I'm just saying that, like, I would find it quite hard to say who... in my life doesn't understand PDA because to an extent, probably lots of them couldn't tell you lots about PDA.
Speaker: But if I said to them, tell him tell this person about me, they could do that really well. Yeah, and that's really useful and really transferable, actually, for anybody kind of starting to work out how they can get support for themselves or for somebody that they love, is actually saying this human being needs this thing is just so much more powerful than saying this kind of group of individuals that then you need to...
Speaker: to buy into the kind of existence of these people as a group and feel you need to understand the definition instead of just going this individual, this is what works.
Speaker: i think that's really helpful. to and if you could yeah do this. Yeah. So the, which leads me really beautifully onto,
Speaker: I have like three final questions for this bit. We are going to go on and talk ah in the kind of deeper dive ah bit about your career and about ah teaching.
Speaker: But if you had one thing, if you were meeting somebody who had just done what you've done and had just kind of worked out that this friction that they're experiencing, this kind of weight around demands might be PDA.
Speaker: yeah And they're starting out on their journey and they've come to you and they said, hey, is the one thing that you wish you knew right when you were me that would be helpful? What is it?
Speaker: You need to work out what you're doing because you think you should be doing it. versus what you're doing because you actually need to do it. Like, you watch it actually aligned with you. Because I think if we spent more time getting rid of some of those shoulds,
Speaker: it would alleviate a lot of those concerns. Like what does it matter if, I think has always been a question that I've encouraged people to ask in and around PDA. Like what does it matter if you don't have any pictures on your walls in your house?
Speaker: Because it's one less thing for you to clean. What does it matter if, you shower at 10 o'clock at night rather than 10 o'clock in the morning like and if and if the answer that comes back is an important answer then you respond to that but i invite you to do it because so many times the answer will be like i don't know why we're doing this i don't know why i we're doing this like this yeah that's super helpful and um my second question was in a similar theme which is um You're meeting a parent or carer of a kid who's struggling.
Speaker: Yeah. What would you tell them?
Speaker: think very cop-outly, probably the same advice. I think follow your gut.
Speaker: um I think for so many PDA parents, I would say nine nine nine times out of 10, when the parent came to me, they were telling me already what they thought they should be doing, but weren't doing it because they were worried that that was the wrong thing to do based upon offering someone else's judgment.
Speaker: Yes. They would come and be like, I think I should be doing this. But this book said, the health visitor said, the teacher said, the whatever said, I should be doing this.
Speaker: And I think, like I say, nine times out of 10, that would happen. And the thing that they thought they should be doing, for example, I don't think I should be doing homework or, you know, I, you know, bedtimes don't really work. And actually they go to bed earlier when I leave them to it rather than me trying to force them into bed. But the the consultant that said that before they can have melatonin, they need to, you already know the answer.
Speaker: Yeah. It's just having the courage to be able to choose to live ah against the status quo. And I make that sound really simplistic, like it's just courage and you just have it. Like you absolutely have to build that courage.
Speaker: and But I would say like. Getting ready to break down a lot of those societal norms.
Speaker: More than one way to raise a child. That's really great. Okay. So this next question is quite a broad one. It's probably a yes, no answer, but it might not be with you.
Speaker: um is Is it possible to be a happy PDA-er? Yeah, I think I'm happy. So I'd say, yeah.
Speaker: Yeah. I think there's definitely challenges to it. um I think... I will have a lot of privileges that maybe others don't have and people might have privileges that I don't have.
Speaker: and And that could be anywhere down to like geographical and there being access to something in my area that isn't available in another area. um But I would say definitely is absolutely possible to be happy as a PDA. Yeah.
Speaker: I'd say my life was much happier once I understood it. and And was able to work with it, not against it.
Speaker: and And also chose to do things differently. think it's hard to be happy as a PDA and trying to be the same as everybody else. I don't think that's yeah i don't think that's possible.
Speaker: But I mean, I've proved me wrong, but... um I don't know if you'd be truly happy in that existence in that way.
Speaker: That's very cool. always very cool. ah So we're going to wrap up this conversation between me and H now, but um the we are going to have a deeper conversation about what it's how PDA influenced H's teaching um in our subscriber section, which there'll be notes in the podcast on how to get to. But for now, I just really wanted to thank you. It's always an absolute joy. And I hope you guys found that useful. Thank you very much.
Speaker: Thank you for joining us on the PDA Society's podcast. We hope you enjoyed this episode. If you found it helpful, don't forget to subscribe and share. For more support, resources and information, visit the PDA Society's website site at www.pdasociety.org.uk.
Speaker: See you next time.
