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Podcast Episode Transcript

Episode 23

Interview between Speaker 1 (Meg) and Speaker 2 (Harry Thompson)

[Introductory note]
Hey, podcast listeners! Meg here. If you're a professional who listens to this podcast, chances are your work reflects both your values and pro-neurodiversity practices. But if you want to test that theory, I made a free quiz just for you. The Learn, Play, Thrive quiz takes less than two minutes to complete. And after you finish it, you'll get tons of information about your strengths, your blind spots, and possible next steps. You'll find the quiz at learnplaythrive.com/quiz. So, give it a shot, see how you do, and maybe learn something new. Now, here's the episode.

[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.

Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.

Welcome to Episode 23 with Harry Thompson. Harry is a UK-based public speaker and researcher who is autistic with a Pathological Demand Avoidance, or PDA, profile. This profile might not be familiar to you if you're in the US, but we'll talk a lot about what it means and why many people haven't heard about it on the podcast. Harry is the author of 'The PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum'. In his book and in his other work, Harry aims to bring more acceptance and joy to the lives of people who are autistic and have a PDA profile. So, while PDAers are autistic, they are also quite different. I teach an online course that's focused around teaching new developmental skills in ways that speak to the strengths of autistic people – things like meaningful visual instructions and executive function supports. And when I asked Harry about using things like these for people with a PDA profile, he flat out said, "Meg, this isn’t just ineffective, it’s damaging for PDAers." And I’ll be honest, I flinched and I wanted to edit it out. But I didn’t. Because we need to be able to understand the strengths, learning profile, and the needs of our PDAers just as much as we do other autistic folks. To learn about Harry’s journey and how we can work with PDAers in a truly strengths-based way, keep listening. Here’s the interview.

Hi, Harry! Welcome to the podcast.

Harry: Hello, Meg. Thanks for having me.

Meg: Oh, it's a pleasure. So, to start off, can you explain to us what pathological demand avoidance is, and why many of us in the United States might not have even heard about it before?

Harry: The 'demand avoidance' is clinically significant. So, it affects each and every aspect of the individual's life, so it's quite pervasive, and I suppose it's very little known in the US because it doesn't feature in either of the main Diagnostic Manual. Over here in Europe, we use the International Classification of Diseases, and over in the States you use the Diagnostic and Statistical Manual of Mental Disorders, so it does not feature in either of those diagnostic manuals.

Meg: So, some people might be listening and thinking, “Oh, so, we see demand avoidance in all kinds of different people with all kinds of different diagnoses or with no diagnoses.” What’s the difference between demand avoidance in general, and what would be called the pathological demand avoidance profile of an autistic person?

Harry: It's a very good question. Also, there is some controversy surrounding the word 'pathological' kind of proceeding the 'demand avoidance', for all sorts of reasons. For many, it has very negative — perhaps medical — connotations, and makes people think of psychopaths and pathological liars, etc. Some don't like the word but may justify its usage on the basis that it highlights how, I suppose, extreme and pervasive the demand avoidance actually is. And when it comes to distinguishing demand avoidance from demand avoidance of the PDA kind, I think it's more important to acknowledge the drivers behind the demand avoidance, as opposed to the extent or the frequency.

So, there are many rational forms of demand avoidance, and obviously, it's important for me to point out at this point that demand avoidance is very much a human trait. We all demand avoidance, for all sorts of reasons. So, forms of rational demand avoidance would be — or we can start off by explaining how sometimes, perhaps leaving the house is difficult because the weather's really, really bad and maybe we haven't slept well the night before. And so we are tired, and the weather conditions cause us to stay in. Or we could consider stage fright, performance anxiety, some people find the thought of performing to a large crowd of people daunting, and maybe even the level of anxiety that that would induce would be unbearable as to render the individual unable to perform.

And we can move into the realm of neurodivergence and look at other forms of demand avoidance, such as sensory avoidance. Perhaps some children are unable to tolerate a classroom on the basis there are too many children there, and there are too many smells, there are too many noises, etc. We could consider maybe a more ADHD form of demand avoidance; executive dysfunction, which I prefer to call executive tiredness. So, perhaps some tasks or activities require a certain level of mental energy, and if we don't have the executive functioning to carry out, or even begin, or perhaps finish said task, then it will be put off or avoided on the basis that I don't have the executive functioning levels required to complete the task, and so on and so forth.

And then we get closer and closer to the demand avoidance of the PDA kind still. There's a phenomenon called 'autistic inertia', which is best described as a difficulty with shifting gears or transitioning from point A to point B. So, a lot of the time, when autistic children, for example, are unable to come away from their video games, this is due to autistic inertia. So, we have to consider that our global stability as autistic individuals is poor on the basis that the world or the system is not designed for us in mind. And so, we become very reliant on activities, or outside objects for our sense of safety.

So, I always say, video games are solutions, they're not problems, although they're invariably viewed as problems by parents. I say, "No, to your child, they are solutions. The world is a problem." And they can keep safe when playing their video games. They feel in control. Anxiety is low, they can kind of enter this alternative universe where the real world is either boring or just unsafe, right. So, they experience autistic inertia because they are unable to come away from this. It's too good. It's providing them with too much for them to just step away from it for seemingly no good reason. So, you could consider a child who feels they are unable to step away from their Xbox, whilst their parents are encouraging them to play outside, it's a nice day. And this could look like demand avoidance of the PDA kind but no, because if it's autistic inertia, they are for the most part focused on Point A. Point A is playing video games, point B is going outside. It's not that they're avoiding the demand to go outside, it's that they can't get away from the Xbox, right.

So, if it was demand avoidance of the PDA kind, which I'll explain now, there's more focus on point B, going outside. We may be able to depart from point A, which is playing video games. But then we get caught in limbo, because there is a demand to go outside. Now, it's not always clear why a demand is avoided other than it is a demand, and by definition, we avoid demands. It isn't always rational, although from our perspective, it feels rational, right. So, other people would describe it as irrational because it has no bearing on how much we like to do something. It has no bearing on how proficient and able we are, or how good we are at something. It has no bearing on how energetic we feel on any given day. All of these things do not matter. If we are confronted with a demand, we avoid it for seemingly no reason other than it is a demand. In order to zero in on a little more of an adequate explanation, now the literature would describe this as an anxiety-driven need to remain in control. So, control has to be retained if we are to survive.

Meg: So, it sounds like in pathological demand avoidance, the demand avoidance isn't explained by sensory needs or sensory differences, and it's not explained by executive function differences, or like that you use the phrase 'executive tiredness'; so, the ability to shift your attention from what you're doing to the next activity which is a part of executive function tasks; or the ability to know when something's finished, to know how to start something else. The demand avoidance is not explained by that. It's just avoiding demands because they are demands. And it sounds like there are some other explanations — and before we get to those, I do want to ask, you mentioned that there's different feelings about the name, similar to Autism Spectrum Disorder, right. It's got 'disorder' in the name and we don't say that, we say 'autistic person'. I'm curious — you didn't mention this, so I'm curious how you feel about the name.

Harry: I'm used to abbreviating it to its initials, you know, PDA. So, I don't actually remind myself often of what it stands for. I'm used to saying 'PDA', 'PDA child', 'PDAer', 'PDA adult', 'PDA person'. So, I frequently forget about what these individual letters stand for. But when it comes to my own personal feelings about the name; one, yes, the word 'pathological' is more than problematic. It's awful. Like, it's ugly.

Meg: Yeah.

Harry: It's an ugly word. And I don't think it does the PDA individual a lot of justice. I think PDA is so much more than demand avoidance. There's so much more to PDA than just that one behavior, right. So, when I'm writing on my page, I try and focus on other dimensions of the multi-dimensionality of PDA, but I guess I understand why the word was chosen, as I said, to highlight just how pervasive and extensive the demand avoidance is. Some clinics and clinicians actually prefer the term 'extreme demand avoidance' in the UK. One clinician I know of sometimes uses the term 'pervasive demand avoidance' and I like that one.

Meg: I like that, too. Yeah. So, you mentioned that one of the possible explanations of demand avoidance in PDA is anxiety. Can you talk a little bit more about the link between PDA and anxiety?

Harry: As I mentioned before, PDA is regarded as an anxiety-driven need to remain in control. The demand represents that which steers us away from our control, our freedom, our truth, as it were. Looking back, in retrospect, I can analyze my life and understand that if we consider a kind of metaphorical PDA entity that lives within, it kind of undergoes this process of elimination. It says no to absolutely everything, right, until you get to a point where you've said no to so many things that you're left with something that might work. And that's when I feel like I've kind of entered this role, as it were. But I created this metaphorical construct that I dubbed the 'PDA current', which I describe as — it's hard for me to pin it down, usually I have a very elaborate explanation for this.

So, the PDA current is our identity. It represents being in our bliss and our total, you know, in total freedom. So, Elizabeth Newson, the developmental psychologist who originally recognized the first 12 cases of PDA back in the 1980s, wrote about PDA and described the child as not having a social identity, right. So, being unable to relate to their peers, as seemingly blind to authority and perhaps parental status, and the rest of it. And I say, actually, I think we have this utter knowingness as to what our true identity is. I just think in childhood, we're not able to be who we kind of see ourselves, because our parents and people in our environment are so busy trying to encourage us to go down a certain path, right. So, I also describe PDAers as being ageless and timeless.

When I was little part of me had no concept that I was a child, right. I saw myself as ready to go out into the world and assume full adult responsibility, but obviously, consciously, I was aware that I was in a smaller body than that of adults. But the idea that I had to learn, and grow, and develop, and evolve into an adult, a fully grown adult, before I could go out and take on the world independently was inconceivable. So, my sense of timelessness dictated that I should just be going out and doing those things right now. And my agelessness dictated that I'm no different to anyone else, right, so there's this sense of being kind of just bound by this one moment that kind of subsumes past, present and future. You know, this is my way of articulating the PDA experience. So, as if you consider children, we are under total, round-the-clock, surveillance. Our freedom is by definition restricted, and freedom is the life force of PDA.

Freedom is different to control. Control is what we require when freedom levels are low. It's like the drug, whereas freedom is like true happiness. But true happiness takes a long time to cultivate, whereas instant gratification — like, I don't know, if we feel insecure, not confident, and unhappy, having a drink helps us to feel the pale imitation of happiness, security, and all the rest of it. And that's what control does, it's like the pale imitation of freedom. So, if freedom levels are low, you then go on to exert control on the outside world.

Meg: Or a video game, like you said before.

Harry: Exactly, exactly.

Meg: You need total control. Yeah.

Harry: Exactly. Exactly. So, freedom levels are low by definition as a child, and everyone is ushering you towards school, and ushering you towards a certain path, and you cannot help but not resonate with anything people are saying to you. So, that's where the anxiety kicks in and you realize that the demands are these kind of pesky little beings that are designed to take you away from who you really are. You don't recognize your surroundings as home, it doesn't feel right. So, it wasn't until I started assuming this role, that, "Ah! This is it. This is what I've been waiting for," because my childhood was just a series of, "Nope, nope, nope, nope, nope, nope". I had to say no to everything until I got to this place, and now, that is it. That is my identity. And like I described, now I'm in the PDA current. The demand represents that which steers you away from the PDA current. Within the current, you can flow seamlessly and swimmingly, you know.

Meg: That's so interesting. So, it sounds like you're describing PDAers as autistic people, with a very strong and unwielding sense of personal autonomy.

Harry: Exactly, exactly. So, actually I didn't mention this before, but there's a PDA adult and researcher who has kind of re-branded PDA as 'pervasive drive for autonomy'. And that's probably my favorite.

Meg: I love that.

Harry: Yeah, exactly, you know, there's no, there's no stigma, there's no medical connotations; pervasive drive for autonomy, it's just —

Meg: Wow.

Harry: Sweet. Simple. To the point. Descriptive. Accurate.

Meg: Do you know who coined that?

Harry: Emily Wilding.

Meg: I'll look her up and link to her in the show notes as well.

Harry: Yes, please credit her because you know, that's...

Meg: Yeah, that's a great reframe. And that's a nice segue into talking about strengths. So, when we say pathological demand avoidance, this is kids who, you know, have so much disruption in their life because they avoid all the demands placed on them and yada, yada, yada, yada, yada. But we know that these are the ways in which this child's profile is a poor fit with the way society is set up, and that the problem lies somewhere in the middle, right. Not within the child, but within how the child gets to exist within this neurotypical world. But we also know that that child has their own set of strengths that come with that profile. What are some of the unique strengths of people with the PDA profile?

Harry: Great leadership quality. This ability to think abstractly. Just this unflagging resilience of character. Being totally unmoldable, being this kind of otherworldly, enigmatic, boundlessly energetic, free thinking maverick. Only doing when it's right to do. I often say, it's not that we are averse to action. We view the doing process as sacred. We will only do when it is right. I often describe a PDAers as life artists, so we have an artistic attachment to life, as though life is our instrument, or as though life is our craft. And we are largely governed by — well, our ability to do rests upon however inspired we may be. You know, inspiration over instruction is my PDA principle. You can't push us into anything. We can somewhat be lured in so long as we are intrinsically motivated, not extrinsically motivated. It doesn't work if other people lure us in, but, you know, certain things in our environment, certain experiences can be alluring. So, life artists in the sense that we consider a painter, or a sculptor, you know, they have a very, very sacred bond that they have with their craft. And I think we have a sacred bond to life. So sacred, in fact, that we will only step forth if it is right to do so, and when we do, we do it with a level of passion that is just, you know, largely, probably unheard of in other human beings.

Because, as I said, we are governed by inspiration. We cannot do anything arbitrarily, half-heartedly, in accordance with another's wishes. So, to do is a sacred act. I could never sit down to write anything. I always tell people, I don't write anything, I don't make YouTube videos, I don't give talks. I say, I become the talk, I become the article I'm writing. There can be no separation between myself and that which I intend to do, because this allows room for a demand to wiggle in. In order for me to do anything, I have to become it. There has to be no separation between me and the thing, and this is what I meant when I said the PDA current becomes your true identity. If I am writing a blog post, I become the blog post, and therefore, that becomes my identity because I'm in the flow then, right. If there is no flow, there is no go.

Meg: That is so interesting, you know, while the whole neurotypical world — or not the whole world — but many of us are reading books and listening to podcasts to try to learn how to be more in the moment, and be our authentic selves, and be less people-pleasing; you're saying this is my jam. This is who I am.

Harry: Exactly.

Meg: This is what I'm good at.

Harry: So, meditation, education, and therapy don't make any sense when they exist outside the PDA lifestyle. They are fully integrated, you know, because there is the phenomenon of self-imposed demands, and I believe it's something of a misnomer, because when your thoughts begin to turn on you and order you around, even if it's as simple as, "It is now time to eat. I should really practice the piano. I should really walk the dog. I should really insert-whatever-it-is-here," you then regard your thoughts in the same way as you regard anything else on the outside. They are external agents which are attempting to impose themselves on you and take away your sense of being in control. And then your thoughts themselves can incapacitate you and deter you from achieving things.

So, people ask me often, "How is it, Harry, that you possess the demand tolerance to practice the piano or the guitar?" and I say, "I don't see it as that. I just find myself doing these things." I would never sit down to play, I would never sit down to write, I don't even get in bed to sleep. You can go to sleep and have no bedtime, you can eat and have no meal time, you can play your musical instruments and never practice. PDA living is very much a state of mind, or a stateless state of mind.

Meg: A stateless state of mind.

Harry: There is no state. So, that's why it gets all very zen and Taoist and, you know, I'm aware of that. People have said that. I said, "Yeah, it's this sense of, you can only get in the current if you expect to do anything at all." If you're not moving, you're outside the current, right. I am separate; as soon as you recognize that you're separate to the current, nothing works. Things stop working. And I'm saying this, you know, I'm not — I'm an agnostic atheist, right. So, there's no metaphysical connotations here. I'm speaking purely metaphorically.

Meg: Yeah. So, I'd love to hear a little bit more about your experience living as an autistic person with a PDA profile. And from what you've described so far, it sounds like childhood was hard — and we hear this from a lot of neurodivergent people — and that as an adult, you're able to craft a life that really works for you. What are some of the things that have been helpful to you in your own PDA journey, and what are some of the big challenges?

Harry: Yeah, I'm so stubborn. I think my stubbornness got me here. Seriously, I would not yield. It was difficult to everyone, for everyone who ever had to come into contact with me, but my mum kind of noticed there was a sense of, "Alright, okay," when I was about six months old, but she had no one. I was the firstborn, so she didn't have any other child to compare me to. It wasn't until my brother was born two years, four months later that she realized, "Oh, my gosh. Harry was a very, very challenging infant." Because I began refusing sleep at six months. And we had, what we call in the UK, the 'Health' visit around who said, "Put bars on his door." And that was a big mistake, you know, because I was just screeching and melting down into the night, trashing my room, wouldn't stop, you know. In the early hours of the morning I was still going and then they eventually woke up the next day, and the whole place was a complete mess, and they couldn't find me. And, you know, and then they found me upside down in my toy box. Then they realized, okay, right, that approach is not going to work with this child.

And I was obviously described as 'bored' and 'non-compliant' by my nursery teachers. I do have a memory, actually, of crying as my nursery teacher was asking me to write — draw a picture of my goldfish. And I also have a memory of all of the children being asked to line up outside the toilet. I can't remember why, and I can't even remember if I'm remembering that accurately, but we were asked to line up outside, something outside the main hall. And then I went against what she said. And then it's quite symbolic, actually, because I remember running towards the lunchboxes, and a few meters before, I jumped on my knees and slide. And I was kind of on my knees facing the opposite direction of the class, and I remember looking behind me and the teachers were, you know, groaning, and the children were watching. I remember, I was only three, but I had this sense of, "I'm not like the others," and I can't remember how I would have conceptualized that epiphany, but I remember feeling the sense of being different, and then just finding things ridiculously hard.

But the thing is, I was what you might call 'gifted'. So learning to read was a breeze. I was top of my class when it came to reading. And so, the teachers found this confusing. I can remember all throughout my childhood teachers saying, "You can do better than this, you know. You shouldn't be behaving like this on the basis you are clever," so, they'd say flattering things about my intelligence, but I never found it helpful. I was a very shy and quiet child between the ages of 4 and 10. I went to an all-boys prep school, a private school, and it was very reminiscent of, you know, traditional English education. I think a lot of my trauma came from there, because I could not cope under the pressure. I could not cope under the pressure.

I can remember having a lot of separation anxiety when it came to my mother dropping me off at school. I've got memories of screaming and crying on the doorstep, and memories of — I mean I would say to her every day as I walked into school, "Remember to park outside the classroom," you know, I'd have to say that every single time. And one day I said it, but I changed the wording, and my mother mistook it for, "Can you park outside a different place," and then when I walked through the place I expected to find her, she wasn't there, and I just collapsed because I couldn't cope with — I couldn't cope with the fact that she wasn't where I felt I needed her to be, and I can remember hyperventilating. I remember feeling that — I had no object permanence, right, so she was out the picture, she was dead. And I remember even beginning the grieving process; telling myself, "She's dead." Being being unbearably anxious and I would vomit in school randomly, you know, due to anxiety. I would frequently, at the beginning of class run to the — we call it the matron, you'd call it the school nurse — I'd run to her office and kind of beg her to send me home every day.

I would mask a lot as well. And I remember not doing homework, and the teacher saying, "Where is it?", "Not done it,", "Where is it?", "I've not done it,", "Where is it?" —I'd never, ever do homework. I found it an insult. I used to say to my mom, school is for work, home is for play, you cannot mix the two. And I remember the teacher threatening to punish me if I didn't, because I didn't do it in weeks this one piece of homework, specifically, I never ever did it. And he said, "Have you got something for me?", every day he'd say that, "Have you got something from me?" And I'd avoid him. I'd watch him coming, approaching me in the corridor, run around, you know, do everything I could to avoid him. And then one day, in the school assembly hall, he was sitting right behind me, and he said, "Have you got something for me?", and I said, "No." And he said, "You know, you're gonna get a punishment, like a detention, if you don't have it in by tomorrow," and I remember feeling really scared at him, but it still wasn't enough to get me to do it. So, I kind of continued to buckle under the unrelenting pressure of this place and then my mom had to withdraw me because she said you were on the verge of having just a complete mental breakdown, even though you were only 10.

And then they moved me to another kind of school, a Steiner School, because they believed — Oh, wow, the approach here is a lot more gentle. No uniform, and, you know, just academically less pressurized. But it's still a system, right, it's still a way of life and what happened miraculously when I went to the Steiner School was that I started developing all of this self-confidence. I'm not sure where it came from. I became very confident, but with that, I became uncontrollable in class. So, where I did mess about a little bit when I was in my first school, and I was already a class clown. I would sit there quietly not speaking to anyone and occasionally I'd cavort out of my shell, put on a grand performance, and then swiftly withdraw back and be quiet again. And now that inner Loki, I call it, suddenly assumed full-time work when I was at the Steiner School. It was out constantly and I was — my behavior was increasingly becoming more uncontrolled, so I eventually left that school. And then when — people who haven't bought my book, I'm kind of giving them the whole story now.

Anyway, I don't think I need to be quite so biographical. So, pretty much, my childhood consisted of inconsistent emotions. Sometimes I feel this sense of, "Oh, wow, I kind of like what I'm doing," like when I became a real class clown, there was a sense of comfort in that, but my happiness was at the expense of everyone else. And then after the Steiner School, I went to a home-from-home schooling organization run by a woman in her beautiful farmhouse in rural Hartfordshire, which is home county in the UK. And this was essentially a sanctuary for the neurodivergent. I was really, really happy here. But, you know, I came across my old school report not so long ago and goodness me, I was — she said that, she described me as like a whirlwind. To me, I was just having fun. But in order for me to have fun, it seems to be destructive in nature. My version of having fun is to kind of ruin someone else's day in the process, not necessarily intentionally.

So, I suppose, a lot of my childhood was just characterized by confusion. That woman said to me, "I see you've got problems," which was a relief for me to hear because people kept on telling me, "No, you're just being lazy. You are. You're better than this. You're too clever to be behaving like this," and that was never helpful. She said, "Yeah, I can understand why you find life difficult," and explained it to me in a way that I fully resonated with. So, that was when I was 13 and that was the first time I think I truly felt understood.

Meg: Yeah, we hear this again and again, that having a word for how you think, and knowing that there's — you have people, and that you have a culture is really freeing to so many people, as opposed to just being labeled 'bad', or 'wild', or 'defiant'.

Harry: That's where the medical model is so unhelpful, because it explains just one dimension of the individual. I suppose, it's so important to cultivate a positive neurodivergent identity as early as possible. We get diagnosed at a time everything goes wrong in our life. You cannot help associate our diagnosis with bad things, because, "Oh yes, I got that diagnosis when I was giving everyone a hard time, when I was having meltdown after meltdown, when I couldn't leave my bedroom." So, this is why it's very important that autistic people come to recognize their strengths, and not just the ways in which they fail to meet the standards of the non-autistic world, because it's very, very difficult to shake off the stigma that you internalize. Because, I mean, I can remember just, I mean — even sometimes now, to a certain extent, I will recognize, "Goodness me. Universally, a lot of people find me unbearable to be around," right. So, either I am unbearable in my heart, in my soul. Or, I was never understood, and I was never in the right place.

And there's a part of me that's just always struggling to come to terms with the disharmony, the constant disharmony, that I experience between who I am, and where I am, and who I'm with. So, that negative kind of diatribe we direct towards ourselves, it gets so cemented, it gets so trapped. That's why it's important, "I am a defective, awful, good for nothing, an idiot" — I could I could think of ruder words — can become, "I am an autistic person who has been traumatized by my experiences. And that's understandable, given that the way I experience the world does not lend itself to how the world is run."

Meg: Yeah, we hear that with so many autistic people and non-autistic people with ADHD, who were just criticized throughout childhood while they're forming their sense of self, and your story really highlights how much compliance is demanded of children. And why, you know. A part of it is for logistical and practical reasons, and probably part of it is that our world demands compliant adults, or people will challenge systems that are unfair and bring things toppling to the ground. So, we teach compliance from a really young age.

Harry: Yeah. I think PDA is a gift to the world, in that everything we're kind of putting up with has to stop right now. I think what distinguishes PDA from everything else is our extremity in presentation, and total lack of tolerance for bullshit.

Meg: Yeah.

Harry: No, this stops now. This stops right now, right here. Enough. Right. Stop everything in its tracks.

Meg: Yeah, there's something to be learned from that. Absolutely. So, one of the purposes of this podcast is for non-autistic therapists, or other people supporting autistic people, to better take the perspective of our autistic clients. So, can you walk them through an example of a demand being placed on a child with the PDA profile, like a girl who doesn't want to shower, perhaps from the girl's perspective?

Harry: Yes. So, as I said right at the beginning, perhaps the girl wants to shower. That she wants to is not a strong enough motive to shower. There's something else at play here. If there is a sense that I have to shower, it doesn't get done. And given that this is a child we're talking about, most likely, one of her parents are, or both of them, are urging her to shower. Why? Because it's healthy to maintain good hygiene habits, practices. So, suddenly, the process of showering can feel like it's this snake, this poisonous snake slithering towards you, that you have to avoid at all costs. It feels like the closer you get to showering, the closer you get to death. The more your anxiety levels rise. The more you have to hide away. The more you have to fight, the more you have to protect yourself, the more you have to incapacitate the person asking, you know, by means of confusion and socially objectionable behavior.

And just distracting them by being random, and silly, and unexpected; doing whatever you can to avoid getting in the shower. I always say, if the task is regarded as the terminal point or the goal, it can't be done. Demands make more sense when they are situated in a wider context. A friend of mine, Jody is it, runs a page called 'Autism with Love' on Facebook. She has a daughter who is PDA, and she finds showering to be very demanding. One day, the PDA girl was playing with her younger sister, who was using hair curling tongs to curl her hair. And Lola said, "Mummy, I really want to do that," and Jodi said to her, "I'm sure you do, darling, but it's going to be very difficult if your hair isn't washed." And then, with that, Lola jumped in the shower. Because what she did was she relegated the demand status of showering. Showering went from being the end goal set by someone else, to the means towards a goal of her own choosing.

So, I don't necessarily believe that we just have to remove demands. I think we can change the experience of the demand. I think we can convert demands into stepping stones. So, yeah, it's terrifying. It's essentially, it's feelings of fear and terror, and that you are compromising yourself beyond recognition. If you approach the demand because no, you identify with this feeling of being in control, and feeling free more than anything else, if anyone takes that away from you, your survival instincts kick in.

Meg: Okay, so we can try to facilitate this process of moving the demand to a secondary focus and having something more aligned with that child's own desire, with their own autonomous self as the primary focus.

Harry: Exactly, things can get done. Things can get done. For example — I mean, this is this is what I mean. Everything has to be integrated into their lifestyle. We have to really go along with the child's, or the person's, primary focuses, aka their special interests. And then we have to ask, "How can we incorporate certain activities or tasks into the person's attention tunnel?" So, the example I often give is, imagine a kid refuses to shower or bathe when their mom asks him to do so. And then imagine that he also takes up the drums, he starts drumming in his bedroom. Perhaps this is after, you know, due to some sensory need to bang things, you know. The beauty of the special interest is that it becomes a driving force in the person's life. And I describe how there is a sphere of importance.

So, drumming is at the center of the sphere. And you can utilize other activities as secondary focuses. So, the primary focus is drumming, the secondary focus is something else. And let's have a look, as the sphere of importance expands, it will engulf other activities. For example, talking to other children may be engulfed into the sphere of importance when the drummer realizes that they want to talk to other children to start a band, right. That's how it works. So, outside of the sphere of importance, if someone is talking to you and recommending that you bathe or play with the other children in the street — no, you can't register that as anything other than white noise. It's being externally imposed, we're not extrinsically motivated. That is vital for parents to understand if their children have the PDA profile.

We are not extrinsically motivated, it's purely intrinsic. If you say, "Put your coat on, it's cold outside," you're wasting your time. Let them step outside and feel the cold rain on their arms on their skin. Let them know what it is to feel cold. Do they like the cold? No. Okay. You know, so, rain on my skin. Skin getting cold. Do I like the cold? No. What can I do to remedy the cold? Ah, an extra layer of layer of clothing may be useful right now. The child has to work these things out for themselves. If the parents are actively trying to steer the child down a particular route, it's never, ever ever going to work. Yeah, so, drumming. I now want to reach out to other children because I want to start a band, so socializing becomes secondary. So, primarily, you want to drive your musical focus forward, and then perhaps they get a band together and they have a jam. And then, because they haven't bathed, perhaps the children reject them on the basis they haven't bathed and, you know they're ripe and pongy. So, maybe at that point, that is a good reason to bathe. Not because Mum said so, ages ago, before it was important, but now because I want to drive my musical focus forward, I will use bathing as a means to get there.

Meg: Yeah, my guest in Episode 17, Sarah from The Autistic Empire, said something that you're making me think of, which was that she said we can tell autistic kids what other people's perspective is, and then let them decide if they care about that, or if they want to do something based on that. So, you're saying this parent can say like, "Hey, just so you know the other kids might not like the way you smell when you don't shower," or we can wait and let the other kids say that, and then it's on the kid to decide if that aligns with their own goals for themselves, and the things that they care about, and the ways they want to be seen, or not.

Harry: Yeah, exactly.

Meg: And it's very different from these compliance-based ways that we use kids interests. So, a lot of therapists say, "Oh yeah, I use their interest. I say, 'First you do this, and then you can have that thing that you want'," which is extraordinarily controlling, and compliance-based, and very different from what you're describing.

Harry: Yeah, the listeners can't see me, but I'm kind of writhing in agony.

Meg: You definitely writhed.

Harry: At the improper way of engaging the autistic person's interests, which they do, time and time again. There are two ways to engage an autistic person's interest. One is respectable, one isn't. Okay, and it's actually very simple. The right way is simple. You just take a genuine interest in the interest. Now when it comes to PDA, often the trainer will say, "Oh, you have to find the child's 'What's In It For Me' factor," you know, when it comes to — I don't want to say getting them to do things, because I do not like that concept, but if something is non-negotiable, you're best finding the 'What's In It For Me' factor. What about this process or activity appeals to the child. But when it comes to engaging their interests, firstly, the parent, or professional, or whoever has a duty to find the 'What's In It For Me' factor for them, because sometimes they say to me, "But I'm not into anime, or Pokemon, or Fortnight, or whatever it is," and I'm like, "Well, tough, you know, you're gonna have to find something about that that appeals to you, if you ever expect them to trust you and cooperate with you." So, you find the What's In It For Me factor, take a genuine interest in their interest, and essentially surrender to the interest. We, as autistic people, surrender to our interests, because that's all we have. The world doesn't make sense outside of interest, it's just kind of bleak, and cold, and indistinct, and just thick and murky, and not nice to dwell in. Now, that's the way to do it. Yeah, surrender to the interest, and then you allow the interest to chart its own course.

Meg: Right. I think about my four-year-old who has very strong interests, and he wasn't very interested in learning letters or learning to read until two things happened. One, he started trying to build circuits, there's something called Snap Circuits where you put pieces together to make a circuit, and he had to be able to know what some of them said to build a circuit. And he got a little digital camera, and he couldn't figure out what some of the buttons meant, and all of a sudden, he really needed to know what are these letters, what sounds do they, make what are these words. Yeah, so a lot of the strategies that we often use to support autistic people are focused around clarifying instructions, using visual supports that might play to their strengths, and other types of executive function supports, but it sounds like these types of things that are focused around clarifying expectations, showing the steps, showing finished, might be effective for kids with the PDA profile, because even though we're presenting a demand more clearly, we're still presenting a demand, is that right?

Harry: Not just ineffective, but downright damaging, because it's all geared towards finding a way to make the child comply. And in the previous question, I was going to go on to explain the improper way of engaging the child's interests, which would be to exploit the child's interests as a way of steering them towards your own goals for them, right. So, kind of mixing up their rights and presenting them as privileges. "I will give you sensory time, and I will allow you to pursue your interests, if you do this first," or, "Why don't you come into English class, we're going to be doing this today, and I know that this is your special interest, right?" I remember them doing that with me at one point. I had this special interest, because I — given that I have the PDA profile, autistic people like me are more likely to base our special interests on people. Either people we know, or fictional characters, or celebrities, whoever. At the time, my interest was Johnny Cash. And I remember them basing the lesson on, or at least, including Johnny Cash in the lesson, and I knew what they were trying to do. I knew exactly what they were trying to do. And so, I walked out of the lesson halfway through.

So, we have to be careful not to exploit their interests, as a way of trying to get them to do what we want them to do, you know, and kind of dangling the carrot at the end. "Oh, if you do this, then you will be, you know, granted the opportunity to do the things that you like," but actually, no. Because sensory breaks and the ability to pursue special interests are autistic rights, they're not privileges. We need these things in order to function.
Meg: Yeah, absolutely. So, we've talked about a lot today. If there is one thing you hope people take from our conversation, what's that one takeaway you hope people have gotten from everything we've talked about today?

Harry: Whatever it is that you know about the world, throw it away right now. You're starting all over again. Seriously. Throw away the Master's tools. If you are fortunate enough to have been blessed with a PDA child if you're a parent, seriously, throw away everything you know about the world and start again. And your child will merely respond accordingly to their environment. They will show you how to parent unconsciously, through their behavior, you know, and it's going to be very challenging, and very difficult. But remember, it is they who are being challenged first by their environment, and their distress behaviors are not enjoyable to anyone, not least the person in distress, of course, when we are having that kind of emotional experience. It's awful, but other people end up, you know, suffering as a result. It becomes like viral suffering, but they are actually your greatest teachers. They will show you precisely what you need to do next time around, or what you need to be thinking about, you know.

So, yeah, I am not here to equip people with a specific set of strategies. I always say, I despise just handing out strategies, because it's not PDA-friendly, and your child will recognize that you have suddenly put a new strategy in place. They're too smart to be fooled by that. They'll say, "What are you doing? What's that strategy doing there? Get rid of it right now. What are you trying to do, what are you up to, what is your agenda?" That's why it doesn't work like that. You have to — we have to work on arriving at the same level as our PDA friend, family member, or whoever. It's about understanding. It's about going on a journey. Keep on increasing your level of understanding, keep on exploring deeply. Don't worry about what to do. I get I'm very, very, very — well, I have a reputation for having this very powerful allergic reaction to certain questions I get asked like, "How do I get my child to..." I'm like, "No." I wince in agony because that question stems from old paradigmatic thinking. It's not about that anymore. It's not about entering a battle situation in which you will end up prevailing over your child. No, we are striving towards shared goals. What is the common denominator? What do you want, what does the child want, how can you reconcile this, you know. That's PDA living in a nutshell.

Meg: Thank you, Harry. Tell us what you're working on now and where we can find online.
Harry: Goodness me. I'm everywhere. I'm gradually taking over the world it seems. My book, ‘The PDA Paradox’, was published just a little over two years ago, and I've just finished writing another book with a friend, and a PDA friend of mine is providing the illustrations. I should imagine that would be out later on in the year. I, over lockdown, have focused a lot on, you know, my writing, and I continue to advocate for other children, and train schools, and, you know, give talks — now webinars, you know, now that we're dealing with the whole COVID situation. And, yeah, I'm on Instagram, and Tiktok, more recently. I never thought I'd get a Tik Tok account, that's interesting. I kind of like it. I mean, I did make fun of it literally moments before even getting an account, but now I'm secretly liking it. And I've just admitted that.

Meg: Yeah, not so secret, and I'll link to your Tiktok and all of your other social media accounts in the show notes.

Harry: Yeah, sounds awesome.

Meg: All right, thank you, Harry.

Harry: Thanks Meg.

[Ending note]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.