Demand Avoidance Decoded

What actually is PDA?

Speech and language therapist Libby Hill cuts through the confusion with clarity and compassion, drawing on decades of clinical experience and her work with leading PDA researchers.

"There's demand avoidance, and then there's PDA," Libby explains, highlighting the crucial differences that parents and professionals often miss. While many children resist external demands for logical reasons—sensory discomfort, lack of interest, or burnout—true PDA involves an illogical resistance even to things the person wants to do. This distinction isn't just academic; it fundamentally changes how we should support these children.


Libby and I discuss the struggles parents face when it comes to PDA. The shame, isolation, and burnout experienced when supporting a child or young person with a PDA profile. "Who do you confide in?" she asks, highlighting how parents frequently suffer in silence, afraid to share their reality even with close family. 

Whether you're a parent seeking answers, a professional enhancing your knowledge, or someone who suspects they might have a PDA profile themselves, this conversation provides invaluable insights. 

People and support that were discussed in the episode:

Sally Cat: https://www.facebook.com/SallyCatPDA

PDA Society website: https://www.pdasociety.org.uk/ and helpline: https://www.pdasociety.org.uk/support-and-training/

Libby mentions the PDA practice guidelines which you can find here: https://www.pdasociety.org.uk/research-professional-practice/identification-and-diagnosis-process/

You can find Libby here: 

Facebook, Instagram, LinkedIn

And her new book "Born Naughty"

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Chapters

• 0:59 Meeting Libby Hill
• 4:28 Perfect Parenting and Respect-Based Approaches
• 9:08 What is PDA? Understanding the Basics
• 15:11 PDA vs. Extreme Demand Avoidance
• 21:59 Research Challenges and Diagnostic Confusion
• 32:39 Born Naughty: Libby's Introduction to PDA
• 40:36 Supporting Parents and Accessing Help
• 46:05 New Book and Resources for Professionals

Transcript

Speaker 1: 0:30

I'm delighted today to have Libby Hill join me on the podcast. Libby is a proud mum and grandma. She's a multi-award-winning consultant, speech and language therapist, an international best-selling author and expert witness. Libby specialises in autism, pda and selective mutism. Libby, thank you ever so much for joining us on the podcast today. Welcome to the Untypical Parent podcast. Thank you for so much for joining us on the podcast today. Welcome to the Untypical Parent podcast. Thank you for having me. So we've learned a little bit about you. We've had a little intro before we've come on, and the question that I start all my podcasts with, that all my listeners are now very used to, is are you the perfect parent?

Speaker 2: 1:19

I don't think there is such a thing as a perfect parent, um because, although I try very hard, I'm still human, um yeah but I, my parenting style did irritate people, um, especially when they were younger, because, oh, it was years, it was years before I had children. Uh, I, I was sent on a course I didn't even want to go on and I learned all about the work of alfred adler and about people's egos and respecting people's egos and how, if you respected people and you respected their egos, you just needed to shift the way that you dealt with people so you actually treated them as equals. Children weren't more well, children were more important really than adults. So why should we talk down to them? So I, first of all, I I mean, we're talking years ago, we're talking about 19, 1986 or 1987 and uh, but I loved it and I really embraced it and I realized that, if you so obviously I've seen lots of children at work and if I stopped trying to be the adult and was more their equal, I actually A had more fun.

Speaker 1: 2:38

Yeah.

Speaker 2: 2:39

I got so much more out of them, and so that's what I did. But obviously I did it with other professionals too. So I had found that I was going into schools and asking them to do extra work for children, and even even back in those days you know they thought they were busy then. It's not like it is now, but they thought they were busy, and obviously they were. But so I'd I'd go back in and they hadn't had time to do it and they didn't see it as a priority. And but then I shifted it. So instead of saying, right, I need you to do this, this and this, I shifted it and said this child really needs X, y, z, how could you help me with this? And they all did it so, so, with that in mind, that's how I parented, how I parented.

Speaker 2: 3:32

So, especially with the younger one, nothing else would have worked anyway. But other people thought that I was too soft. You know I was giving them choices. Well, just tell them what you want them to do. But it worked for me and it worked for them, and so we were much more of a team, especially since I was a single parent. So we were more of a team rather than I telling them what to do, and you know. So, in terms of being a perfect parent, I think I was pretty good for them. Yeah, but there is no such thing as a perfect parent, because there'd still be days when I'd yell absolutely don't we all.

Speaker 1: 4:20

And I think there is this kind of idea that we have to become these zen parents that don't show any kind of emotion other than pure happiness and joy most of the time, which is totally unrealistic and I talk a lot about actually that sets. That sets a kind of level for our kids, then thinking that's what a? And then we just get into that self-perpetuating circle, doesn't it, where we do the same thing every time. And I was kind of really curious, as you were talking and thinking, you know, you went on this training and heard about this training and where did the confidence come from Libby to do that? Because that would have been quite different to do that. It was very different at the time because there was no such thing, then, as that gentle parenting or anything like that.

Speaker 2: 5:03

I think I liked it because, as someone with ADHD, my sense of fairness and justice has always been very well developed and when I was at school, the thing that I got into trouble for was asking why we had to do something or questioning, um, why we had to do it that way. Yeah, so I think I appreciated that as a child, I didn't like being told what to do and I much preferred. So I think that the teachers I really liked they were the teachers who gave me much more freedom and flexibility and asked for my opinion, um, of how things should. I mean, some of them obviously couldn't stand me because they just thought I was awful, so be sent out or whatever. We had corporate punishment there and I had the slipper, I had the cane.

Speaker 2: 5:55

It was terrible, but so I knew as a child that I liked to be treated as an equal and I knew that's what got the best for me. So I think it was my experience, really, that sort of thought. I thought, yes, I don't have to be the boss, I don't have to be constantly telling them what to do, and as a therapist, actually I don't. I didn't want compliance from them. I wanted to have to build a relationship with them and because then, if I could build a relationship with them, I knew then I could support them. Yeah, as I, as they needed to be supported, but it was different isn't it?

Speaker 1: 6:33

it's so important that I think, when we're working with our kids and when we're working as therapists, is that we're kind of alongside them. Yeah, there's not this kind of that's how I work as well. As I feel really strongly about that is that I can't. I'm not taking these kids anywhere. I'm not taking them and dumping them somewhere. They're saying that's where you should be. We've got to get alongside them. And a bit like you I'm quite similar in my parenting is that I'm my kids are coming with me and, like you again, I'm a solo parent and we work as a team. I often my kids. There's two things. My kids like what is it? What's my job? To keep us safe, mum? Yeah, and how do we work as a team?

Speaker 2: 7:13

But that's perfect, isn't it? And just to go back to you know, when I said yes and I did yell occasionally and, to be honest, with the younger one, I still yell occasionally, Very similar. And how old are they now? They're 25 and 23. The 22-year-old still lives at home. But and to apologise, yes, because that's actually something that's really good to model, isn't it? So, yes, you mess up, but you have to apologize, and if you apologize, then that's, that's actually showing them, it doesn't.

Speaker 1: 7:46

Yeah, everybody's going to mess up at one time, but yeah, the important bit in there is the repair bit, isn't it the repair bit? I'm going to mess up, but we can repair this. It isn't the end of the world. We will find a way forwards and we can repair this and we'll move on in our relationship and that attachment stays safe and secure.

Speaker 2: 8:06

Yes.

Speaker 1: 8:06

But I did mess up and I'm human and that's okay.

Speaker 2: 8:10

Yes.

Speaker 1: 8:10

Yeah, yeah. So the whole reason I got you, I got you on to talk today, divvy, was to talk about pda, because I know that's your, your special interest. Yes, it is and your zone of genius and area of interest. Um, for people listening, could you explain a bit about what is pda, because it kind of gets lots of acronyms that they use, like PDA, this and OCD and all this kind of stuff. But what does it actually mean? What is PDA?

Speaker 2: 8:41

Well, at the moment is considered to be a profile on the autism spectrum. Yeah, um, I'm really lucky because I I have lots and lots of meetings and um talk to sort of all the PDA professionals on a very regular basis. So we're having lots of debate about lots of things about PDA at the moment, but currently it's seen as part of the autism spectrum. Now, it's actually rare. So a lot of people will see demand avoidance and will say, oh, that's definitely PDA. Um, but with PDA it's much more complicated than just being demand avoidant. So anybody can be demand avoidant. I can be very demand avoidant.

Speaker 1: 9:29

I mean, I think yeah um, you know.

Speaker 2: 9:32

So if I was going to hoover up and someone said just hoover, I wouldn't be able to do that. That just and all people, not just autistic people, can be demand avoidant with things that they find that they're not interested in or they find aversive for sensory reasons. Maybe the linguistic demand is too much or whatever, so they will avoid those demands. Demand is too much or whatever, so they will avoid those demands, but those avoid. If you actually drill down, you can see that actually that's very logical because they're trying to avoid something that is physically uncomfortable for them or they don't see the point or they just don't want to. Pda is much more complicated than that and at the moment we haven't got a tool that tells us is it extreme demand avoidance, as I've just mentioned, or is it pathological demand avoidance? So extreme demand avoidance is logical, as long as you're looking for the background factors it might come on a little bit later. So usually when they're in school. So the typical thing that I see is they're around eight, they've been a model student in school and then it all goes pear-shaped around year two and the behavior is awful. It is dreadful because the child has just masked and masked and masked and masked no longer and they might not even have an autism diagnosis at that point. So everything they fall off a cliff, basically, but the behavior becomes so appalling and makes family life very difficult. That isn't PDA, that's extreme demand avoidance. So they're responding to their environment PDA.

Speaker 2: 11:09

At the moment we've got a set of descriptors that Elizabeth Newsom came up with. She actually came up with them in the 1980s. She didn't feel that it was part of the autism spectrum. Um, she had it as, um, the um, pervasive developmental disorder, um, non-specified, so um, and it's interesting because we might end up going back that way Nothing's settled. So I know you see there's lots of posts about it's not autism, it's not this, it's the. Nothing is settled yet and I was in a meeting with a lot of very sort of high powered academics and clinicians on Thursday and nothing is is is set in stone. What we have done is do guidance for clinicians and you can find that on the PDA society website and that we've got a flow chart on there that actually looks at is it autism, extreme demand avoidance, or is it PDA? And the thing about PDA it is very illogical and it will have been there from the start okay, and we can really bring our own. I'll tell you the Elizabeth Newsom descriptors in a minute. But we can really bring our own demands down with a PDA, but it doesn't make their demand avoidance any better because their own demand avoidance kicks in and that's the most debilitating factor.

Speaker 2: 12:40

So most of the PDAs that I work with actually they're quite unwell and they fluctuate, but there's a lot of other things that go on with that and so we get a lot of co-occurring conditions like OCD. We might have functional neurological disorder with it, we might have tics that come up. It's actually a horrible thing to have and fortunately it is rare. But we don't know how rare because the only study was done by Gilbert he was one of the people I was with on Thursday Um, and it doesn't separate extreme demand avoidance and PDA. So they said that out of every six autistic people, one is likely to have PDA. It's not as high as that. One might have extreme demand avoidance, but it's not as high as that. But we don't know because we haven't got a tool yet that allows us to be able to say, yeah, this is definitely PDA.

Speaker 2: 13:46

What we're doing at the moment is looking at Elizabeth Newsom's descriptors, which are resists everyday demands. But anybody can resist everyday demands. The thing about PDA is they will resist their own demands, so things that they really, really want to do. And it isn't the fact that there'll be some autistic children who they love going to scouts but actually right now they're in burnout so they're not able to access it. We're not talking about those children, we're talking about that. The demand to do something they really like has just become too much for them, so they resist their own demands.

Speaker 2: 14:24

The next one is she called it no sense of self, and what that means is knowing who you are as a person. And under that umbrella comes the fact that they don't really see them. They don't see any hierarchy. But that goes back to my point. Actually, why should we see hierarchy? Why are adults more important than children? We die for our children, wouldn't we? So actually we're saying that children are more important than us, but PDAs, they don't see any hierarchy, so they don't see that the head teacher is more important than the caretaker. But obviously school systems are based on hierarchy. The other thing in with that is that often um, it's the. It's the cohort where I see most gender fluidity. So I've worked with um girls who have then become boys, many of whom are now back as girls, and vice versa. Um, so it's about knowing who I am, and I wonder where the part of that is, because they're so good at mimicking others and masking that perhaps they don't, they've lost sight of who they are I don't know it needs.

Speaker 2: 15:34

It needs much more research. So we've got resist demands, no sense of self. Elizabeth newsom felt they had language delay as a result of being passive. That's not what I'm finding clinically. I'm finding that parents hadn't spotted anything particularly different about the language. Yeah, what I am finding is they found that they were very difficult babies. They cried a lot, they were difficult to settle, they didn't respond to. They either didn't respond to hugs and didn't want to be held, or they wanted to be held all the time. But either way they've been difficult babies, which she didn't find. So that's a which she didn't find. So that's a slightly different one there. But there's a lot of co-occurring conditions. So you wouldn't just have autism with a PDA profile. So Sally Cat did a study I think there were 136 in the study and she found that if you had a PDA diagnosis you were likely to have at least five other diagnoses. So not just autism, not just ADHD, but literally OCD. The adults with got fibromyalgia, the functional neurological disorder, lots, lots of things.

Speaker 1: 16:49

So and Libby, were those diagnoses correct diagnoses or were they diagnoses that were given because they weren't quite sure what this was about?

Speaker 2: 16:57

It's difficult to say because it was a self-report. But it is one of the things that needs further exploring. But I think it just goes to show that they are very complicated. And you know it's easy to say oh yeah, my child's demand avoidant, they must have PDA. But I'd rather it not be PDA for their sake. I'm hoping it's extreme demand avoidance and then when their needs are met the demand avoidance abates.

Speaker 2: 17:26

Now the problem is all the research to date has grouped together any form of demand avoidance. So if you look at Liz and Ian's extreme demand avoidance questionnaire, which a lot of clinicians have used, just shows extreme demand avoidance. I score really high on that and that's the problem. To date Everything has been together. So now that is improving. So I go to the research group meetings and that is improving now. So there's some PhD work going on now where they're trying to separate that out. So we really will have the right data and we will have a much better understanding. But the research at the moment is around seven years behind the clinical aspect and the lived experience. So you know we, we know what we know. But as a clinician yourself, you know that for evidence-based practice we're supposed to have the triangle and we've only got two sides at the moment. Um, so it is. It is very difficult.

Speaker 2: 18:33

It will get better better because Francesca Happe, for instance, at King's, has got a whole team of PhD researchers who are looking into it and are working on it. So it will. It will get a lot better, but really we need a tool that tells us is it extreme demand avoidance, is it PDA? And I know that because it's just very confusing. So, yes, you know, different different clinicians are coming with different things, so there's a there's about 20 of us all who all agree and and contributed to that particular piece of work, but there are others who haven't read that, so they're still saying PDA, when you know and that's really tricky for parents, isn't?

Speaker 1: 19:17

it is when you've got this kind of mismatch of information and you listen to you to describe it and talk it through, then I didn't realise the nuances in there actually about the differences that we could see, and that's really interesting. And I think the other thing for me around PDA is I often feel there's quite there's a lot of stigma attached to the word or the term PDA.

Speaker 2: 19:40

Yeah, the pathological part.

Speaker 1: 19:42

Yes, it is that A lot of people aren't comfortable with that but they don't like it, it feels doesn't feel very nice to say, but also I kind of feel that you know, over my the years that I've worked is there's, there's an anxiety around PDA and I haven't quite got to the bottom of what it is, but kind of clinicians, parents, there's an anxiety around PDA and and I don't want my child to be PDA, which, no, you know, none of us want to have a more difficult time than they need to have um, but there's, there is this kind of thing around and for for me, my son, they talked about him having a PDO profile and I thought back Now lots of parents would have fought to get that into their EHCP. I fought to get it out Good Because I didn't feel it was PDO. And, funny enough, it's really interesting now listening to you that I think I was right.

Speaker 2: 20:41

Yes, Actually, if the clinician doesn't know any different, then they're going to say that, they're going to say PDA. But I mean, some people have said they'd like it as pervasive drive for autonomy. Yes, but that doesn't fit either, because you give them autonomy but their own demands will get in the way. So that doesn't really fit. It was a Sally Cat coined that one, although other people have taken it on as their own, but the distinct one. So quite often obviously I meet up with people like Dory Davila and Judy Eaton and Phil Christie and we often have a moan because we've met somebody that week who's got a PDA diagnosis. But we know they're not. And of course you can't. You know, you know from your HCPC. We can't criticize another clinician, so you can't say I don't think it is, or you shouldn't. So I'd never do that.

Speaker 2: 21:31

But the key thing is the surface sociability which allows them to. I don't like the word manipulate, I'm not talking about in a malicious way, but that was Elizabeth Newsom's term. It's allowed them to manipulate. So their level of sociability allows you to manipulate and it will always be a social way of avoiding. So it could be yelling and shouting. So if you think about it as a nervous system response and you've got your fight, flight freeze. Your fight and flight really is your PDA or your demand avoidance. Um, so you've got the fight. Might not necessarily be fisticuffs fighting, but it could be. Uh, it's much more likely to be verbal and the flight might not necessarily be running off, but it could be. But it could be under the table, under the duvet. Now, with PDA rather than EDA, there seems to be this extra bit. So the neuroception is triggered by the demand, which then increases the anxiety, which then triggers the fight and flight response or the freeze, because a lot of them have selective mutism too. Is it too simplified?

Speaker 1: 22:38

Libby to say that actually, the core of it is anxiety. That's where it comes from.

Speaker 2: 22:44

Or is that too simplified? It's too simplified. Extreme demand avoidance yes. With this one I mean this sound, you'll get it, but a lot of people listening won't get it. When I meet somebody with PDA, I call it proper PDA without the clinicians would talk about it. I get a feeling in my tummy.

Speaker 1: 23:08

Your central nervous system going hang on a minute? Yes, hang on a minute.

Speaker 2: 23:13

But it is all about their nervous system and how very fragile it is and how they've been in the sympathetic nervous system state for too long, which is why they burn out and their burnout seemed to be they seem to come on quicker and they seem to last longer with with PDA, but it is all. It is all in this nervous system response. And that's why you know why building rapport, building connection, that will work for anybody. And when we've done that, then we can unpick the ones that actually haven't shown the improvement. Because it's really important that we do know the difference. Because if it's autism with extreme demand avoidance, they like routine, certainty, yeah, uh.

Speaker 2: 24:09

With PDA, they don't like no, not no, routine, they have to have a you know something to scaffold their day. But they like to, they like collaboration, they don't mind surprise. Um, you know, sometimes they refuse to look at the pictures that I send of you know who I am, the clinic where they're going to sit. They don't look at that because they don't need it, whereas my autistic um clients like to know exactly where they're coming, what they're going to be doing, where they're going to sit. Um, they don't, they don't care and they'll tell me. No, in certain terms, I don't know that's a really different approach, isn't it?

Speaker 1: 24:43

so, like you say, it's really important to know the difference, and when you've got clinicians out there that are not clear around these differences and are giving diagnoses, then as parents, when I think back, you know us as parents. How do we then parent? Because actually it's totally different ways of parenting yes, and there are some.

Speaker 2: 25:05

So if you think about the, the PDA society have got um, it's called panda strategies. So they call it panda because, um, with PDAs to be honest, with all children, uh, you put them in that they the survival is at risk, but if you put them in the right environment they thrive, and that is the case with anybody with demand avoidance, to be honest. So those panda strategies are usually okay for anybody because they're gentle and it's just about building connection, thinking before you say something, using declarative language or whatever. So they will work for anybody. But your typically autistic child just needs much more structure and they would be lost and it would make it worse if you take away that structure. Just give them complete choice, because it is different. So in my book I've done a whole chapter on what's the difference and I do preface the whole book with this is what I know today, because next week I might have learned something different.

Speaker 1: 26:10

You're changing this so fast. I was worried about that about putting something in writing, thinking well it's right now but it's not going to be right.

Speaker 2: 26:18

you know, even in two years, a year's time, I do think that we will move to a situation um, I mean, it was really really interesting talking to um I think he's called professor christopher gilberg, but he was talking about an essence and what he means by that is basically a neurodivergent profile. So it wouldn't matter whether you were autistic, adhd, dyslexic, apd, dld, you would have a neurodivergent profile. But the things that you particularly struggle with would need to be noted for an HCP or for anything else. That would please a lot of the autistic community. So, um, so Sally Capp, for instance, so she feels that you know we shouldn't use autism as this big sort of mothership, um, because maybe it isn't that. See it in my head.

Speaker 2: 27:16

So about this time last year I listened to a brilliant presentation from somebody called Georgie Sigars who's a paediatrician. She was presenting to the research group and she'd seen, I think it was a good number of children. So the people that had come for her team for diagnostic assessment, the ones that they had given a PDA profile to, were all autistic, adhd, and they'd also got significant rejection sensitivity. So she said if we were in America they would probably got a diagnosis of rejection sensitivity. We don't sort of use it so much there, but she felt, and her team felt that it was the intersection of the three the cat brain of autism, the dog brain of adhd in sort of conflict with this rejection sensitivity. So she felt that that was what was creating pda and I loved that because that really made sense. But now, if we're looking at it as is, it always autism, or should we now be looking wider?

Speaker 2: 28:25

um, that would then sort of discount that. So so we're really in a state of flux. Yeah, so you know, I would have very definitely told you that's what pda was if we'd been talking 12 months ago, because it seemed to make sense. Yeah, yeah, but until until we get a tool I mean, judy eaton is working on one at the moment until we get a tool that actually definitively defines pda. We don't know the numbers because we would need to look at them through that lens, and until the research catches up with the clinical knowledge and the lived experience, we're not going to have those answers.

Speaker 1: 29:07

And yet it is a term that people are using all the time a lot, a lot, and I think you know my experience as well with with um the local authorities is they? They won't. A lot of local authorities won't accept it. They.

Speaker 1: 29:20

They don't see it as a diagnosis. I know some parents fight tooth and nail to get it into their kids' EHCPs and that's why I felt so bad about fighting to get it out, because actually I was finding it wasn't whether they were right or not. It wasn't helpful at that moment for me and it wasn't helpful for my son. I had schools saying we won't even look at him. No, that's the message in there and I just thought you haven't even seen him what I found?

Speaker 2: 29:49

um, I haven't had it for a couple of months, but what I was finding was that if it did mention it in the HCP and we went to tribunal, then the barrister on the opposing side there was obviously word had gone round I do know which tribunal it was actually where it had been so awful the clinician involved won't do tribunals again. So, basically, if you are deemed to believe in PDA which isn't in the diagnostic manuals, then we discredit the whole of your report. Basically that's what had happened. And so what I was finding was and I did actually talk about it with the PDA Society, with Sally Russell and Ed the new CEO, because it bothered me I, because of my ADHD, I have an answer. If somebody that was how I survived school, really I have an answer. If somebody attacks me, I don't get upset about it. And so I was finding that the barrister was trying to say, yes, but PDA doesn't exist, so you know. So we'd be discrediting. And so I'd say, well, hang on a minute.

Speaker 2: 30:56

I did read everybody's bios here and there wasn't anybody else in the room here who is able to take part in an autism diagnosis. So, unless you're a clinical psychologist and I wasn't anybody else in the room here who is able to take part in an autism diagnosis. So, unless you're a clinical psychologist and I didn't know about it then, um, we're not here to talk about diagnosis, we're here to talk about needs. So I don't care what you call it, we're here to talk about his needs and there is no arguing about that, because I've evidenced it, it's all in my report and um, so that was okay, and I've had to do that about four or five times, like I haven't had to do in the last couple of months, but I was worried that other clinicians might not have the answer. Yeah, in the moment, especially when you've been personally attacked, because that's what he's doing, that's what he did to this other clinician who won't go to tribunals now, ever again, because it was so awful for her, and yeah, libby, where did your interest in PDA come from?

Speaker 1: 31:54

I'm really interested in where that's come from, because I can tell it lights you up. Oh, it does. It fascinates you.

Speaker 2: 32:00

Well, I love anything complicated, I try to work things out. Oh, it does, it really does. Well, I love anything complicated and try to work. Well, what happened was and that's why I've actually written the book, because it's 10 years since Born Naughty aired. So Born Naughty was a Channel 4 programme, I remember it. Yeah Well, we actually filmed the year before, and so I met lots of children, children.

Speaker 2: 32:23

We met so many children. A lot of the children then we couldn't use because there were safeguarding issues, because people were saying, oh, you're paying for your diagnosis or you want to have you take your child on the television. So it was nothing to do with actually any safeguarding, it was just people didn't understand their motivations. But there were parents who hadn't got the answers and they wanted answers. So, um, I met this little girl called honey, and it was when the children's centers were really prevalent. We did lots of. We did lots of groups in the children's centers as a team, and I'd borrowed a children's center quite close to where this girl lived.

Speaker 2: 33:04

I hadn't used it before, so it was a little tiny room off a library and so I planned for her to come. It was a Thursday afternoon. I planned for her to come when the library was closed for lunch so that there'd be no other people in there. That might you put her off or not make her want to walk in. So I knew it would be very quiet. There'd only be the librarian, me and the camera crew.

Speaker 2: 33:28

Anyway, I pulled into the car park and this girl was yelling and screaming and calling her mum an effing bitch and all sorts of things. I thought that's obviously the one that's going to see me and my one. Yeah, I'm used to that now, but anyway, anyway. So we went into the library and she was very, very angry. She called me names that I've never been called in combination, uh, before, and she was taking the books off the shelves, going, it's in my way. But the librarian's face was will stay with me forever, because obviously normally it's nice and quiet in there, and she was a very nice lady and she was like oh, anyway, basically she said that she would see me but she didn't let the camera crew in and um, she then said so she, I, I gave I always. I've always done it again as a result of that very early training.

Speaker 2: 34:27

I let them choose what order they want to do things in. So I'll say you know, we've got to do this, this, this. What should we do first? Okay, what should we do next? So, anyway? So she chose, I've got some sensory stuff in there and a bubble wand, and she said, oh, we'll do the bubble wand, but I want to go outside for that. And I said, yeah, that's fine. Anyway, when it came, we did two, two activities. She was eating this sausage roll at the same time as doing activities, but I could hear what she said, so it's no big deal. And then we get to the bubble one. She looks outside and it's teeming it down. You know that rain. You literally you walk out and you're drenched it was like that, and she went.

Speaker 2: 35:04

You said we could go outside to do the bubble wand, and I said, yeah, she went. All right then. So we went outside and afterwards my hair that I'd had done perfect.

Speaker 2: 35:17

You know, for the thing, my hair is like this. She thinks that's hilarious because the rain is dripping, it's dripping off my nose, it's dripping off my ears. So then she says, camera crew, come in now because you look so stupid. So the camera crew came in, but they only saw her doing a little bit of work. So the producer said, oh, we can't use her because, you know, we've only got a tiny bit of filming. And I said, yeah, but we can't let them down because they've been everywhere else.

Speaker 2: 35:59

I am pretty sure she is autistic, but this demand avoidance, this is very unusual and again I had that feeling in my tummy but I didn't know likes animals, how about we take her to a place that's got lots of animals? So I said a friend of mine's a counsellor and she has a therapy dog, she's got sheep, she's got chickens, how about we go there? Well, channel 4, first of all, so they weren't paying for that, but in the end they agreed, we took her there and she was like a different child. She was amazing, absolutely, absolutely amazing, and we were able to do a full assessment. And um Ravi Jaram, the pediatrician, had already seen her and he'd already noted her demand avoidance in just play situations, um. So obviously I was able to talk to him and say I think this child's got PDA, but very, very embarrassing. I said it's like a mild form of autism because I didn't know better. So that's literally.

Speaker 2: 36:51

It was honey that sparked my interest, but what I liked about that programme and why I was quite proud to be involved in it, there were a lot of adults watching. So Rico, who's a great adult PDA, who's written a lot, sally Cat, julia Daunt and an Australian lady called Christy Forbes they were all watching that program and that made them realize that they had PDA. Oh, really, yeah, and so basically. So that's why I wanted to do 10 years on, what would we know now? But it won't be what we know in another 10 years, but I wanted to celebrate it and just say, look, this is what, what we know now, but if you think about their reach and how much good work they've done at spreading the word, that is why everybody's heard of PDA now, whereas you know I've been doing this job 40 years next year and nobody's heard of DLD because we haven't got that same push with people.

Speaker 2: 37:50

So that was what Spark did and then it was actually the fact that I was prepared to go in the rain that I then had an influx of parents thinking, well, if she'll do that and look so silly on TV, I want her to see my child, because obviously she'll do what it takes for that child, for my child, you know, as she did for that child. It didn't bother her that it was the rain and she was going to look silly. Oh, brilliant.

Speaker 1: 38:18

So that was it. Basically, if there are parents out there, because there'll be parents out there. Like you say PDA now the term is being used a lot. Sometimes we discover talking to you incorrectly.

Speaker 2: 38:28

Yes.

Speaker 1: 38:30

If there's a parent out there that's thinking, actually I'm not sure. Or I think you know, we know that parenting in a PDA family can be really tricky and really hard work.

Speaker 2: 38:42

Yes, well, even if it's autism and extreme demand avoidance that can be really tricky and really hard work. Yes, well, even if it's autism, extreme demand avoidance, that can be so, so hard. Yeah, because their needs aren't being met and they're struggling, and they are you know. They're giving us a hard time because they're having such a hard time and and sometimes just to flip that narrative is the first step. Yeah, because you know if somebody's yelling at you and calling you an effing bitch and you know where's my dinner now, and they didn't do that before. Yeah, you know that's how shocking, how awful.

Speaker 1: 39:18

Yeah, or to make their dad cry, um, you know I often think some of the parents I've worked with along the way, you know there's there's quite a lot of shame involved. There is, yes, that they can't control their kids, that they are seen to be too soft on their kids, and and I often think as well, when I you know, when I've worked with these parents, that they're working so hard to reduce the demand on their kids, yes, but actually that demand shifts somewhere else. It doesn't just disappear and often it ends up with the parent holding those demands. And then you could have parents that have got pda profiles or demand avoided profiles, a bit like you and I.

Speaker 2: 39:57

You know that struggle might struggle with that and then that's why we get the parental burnout.

Speaker 1: 40:02

Exactly that, and that's what really interests me is that impact on the parents.

Speaker 2: 40:07

Actually, yes, and it is huge. And they aren't supported. Because you know if, if your child's you know beating you up behind closed doors, who do you confide in? You probably don't even confide in your parents because they just say, well, you weren't like that. You know, give him a good hiding or bring him here, I'll sort him, which we know, we know wouldn't work. Um, whatever the reason for that, that extreme behavior, um, but so so who do you confide in? Yeah, and, and that's the thing you know. So you're probably not telling friends, you're not telling family and you're trying to cope with that. I mean, the PDA Society are a really good helpline. They're all parents of children with demand, avoidance, they will listen and, without judgment, all their PDAs themselves. So Julia Daunt does a lot of volunteering on that line and it's only when you, it's when you talk to the adult PDAers that things they make sense yeah in many ways, um, or some of the teenagers are really, are really helpful, you know.

Speaker 2: 41:17

So if I think about what I've learned, I've learned more from the children, the young people and the adults with PDA. I see Sally Catt for a book club because the demand to go to a research group meeting is too great for her. I love it because her brain, the way her brain works, is amazing, because her brain, the way her brain works, is amazing, and I always come away from the meetings with her with so many questions and it takes me till the next meeting to sort of figure out where everything fits.

Speaker 1: 41:48

But she's done. It's important to get those voices, isn't it Like with anything, really? I think, even when you think about the autistic community or the ADHD community or the dyslexic community, actually it's hearing from the people that experience it, not the textbook somewhere where somebody's given it a title and this is what it should look like.

Speaker 2: 42:07

yeah, um, it's actually hearing from that lived experience it's interesting actually, because I was talking to I won't say who it is and I won't say what area it was in but basically, uh, she said that this group of autistic people who were disagreeing with her were wrong. And how could they be wrong? Because that's their experience and, and you know, we know everybody is going to experience things differently. So sometimes I read things about people with adhd and I think that's nothing like me. Often I do think, yeah, that's just me. But sometimes if it's a professional who's saying, no, you know, it's this, that and the other, and I think well, how?

Speaker 1: 42:44

dare they say that?

Speaker 2: 42:45

How rude. So, yeah, it is difficult, but the guidelines for the clinicians, anybody who's doing an autism diagnosis, who is prepared to put their head above the parapet, because that's basically what they're doing, because it isn't in the diagnostic manuals. If they're prepared to do that, they do need to read that guidance because you know it took us it took us sort of two years to to look at that and to discuss and debate, um, and then draw that up, and then I think there was 11 of us and then we had more validated and look at it. Where is that guidance? Remind me again, libby. It's on the PDA Society website.

Speaker 2: 43:27

So if you just Google PDA guidelines for diagnosing clinicians and it comes up and it's still valid. There's nothing in there at the moment that's changed. There's a lot of debate that's going on, but nothing has actually changed. So it's as I said at the beginning it's still seen as a profile on the autism spectrum at the moment.

Speaker 1: 43:46

Okay, um and I know that you have a book coming out yeah let's a bit about your book, because you've kind of referenced it as you've gone along.

Speaker 2: 43:58

It's basically. It's like what do we know now about PDA 10 years on from Born Naughty? It is a multifunctional book, though, because I need there's only my team. We're fully booked for therapy, but there's so many children that we see for assessment who need a speech and language therapist, they need an ot, they need a psychologist on the on the team. So people say who do you recommend? But I don't know what other people know.

Speaker 2: 44:28

Yeah, so my idea was I'll do a book to celebrate the last 10 years about what do we know, and I'll put lots of my thoughts down there, which obviously I think are interesting for anybody. But, um, uh, that's that would, wouldn't I? But, um, what, what it is? It we're doing an accredited course for. It could be ots, it could be speech and language therapists, could be psychologists, and if they do, the accredited course of my book will be one of the reading materials on there. So will, um, sally cat and brooke deandra have got a new book coming out. Um, that will be really good. I've seen snippets of it already. Um, and steph's two girls, so pda and the family. That's a really good book too. So they'll have to read that and they'll have a couple of assignments to do, but then they can join an accredited list, um, so that I then know that I can say, oh, actually, that person in your area, she's done the accredited course. I can recommend her how amazing that's, that's what it's, that's what it's for.

Speaker 2: 45:28

But steph and um, sally cat and julia daunt will be part of that training because, again, that lived experience I haven't got. Well, I have. I have got some with extreme amount of audience, but he, he's, he's like juggling jelly, um, but um, I, we need to have that. I think we should have training that's much more co-produced now. Now we know better, we should be doing better, shouldn't we?

Speaker 2: 45:53

yeah yeah, absolutely so your book will be out september the 7th is the launch, so it might be it might be on amazon before then, but we'll actually launch it on september the 7th what I'll do, libby, is make sure that all your contact details and where you can find it, we will put those in the show notes so you can find them.

Speaker 1: 46:13

I'll also put the pda society in there and some of the people that you've mentioned, like sally kax, I know, for for me, sally Cat was one that I looked at a lot as one, as a clinician, but also as a parent, when I was thinking about my son and when this diagnosis was kind of was made for him and I thought to have it actually taken off, both at CAMHS and as the HCP and it's we'll put, I'll put all those links there because they're really important, and I think also that helpline is really important. It can be valuable for people. Yeah, absolutely so.

Speaker 2: 46:43

if you're struggling and having a hard time, there's a helpline out there, you've got to talk to somebody, yeah, and when you talk to other people who've experienced it, it almost makes it better, because it's not just you.

Speaker 1: 46:59

And you were saying you know, you're beginning.

Speaker 2: 46:59

Are you a perfect parent? Nobody's a perfect parent, but having such challenging behaviour in a child would just make you question everything about being a parent, absolutely, and that's not a nice place, is it?

Speaker 1: 47:11

No, absolutely not. And like we've talked we just touched on about around the kind of parental burnout, which you know is my kind of yes I. Parental burnout, which you know is my kind of yes, okay, that's my. I like to talk about that kind of side of things. Is that is, making sure you've got those support systems in place to protect you? Um, because, as you say, we only know what we know, and when we do we know better, we do better. Um, and it's, you know, it sounds like even from a you know the professional side of things. The nuance is there between the difference approaches and all that and the diagnostic and being able to give it a label, if that's what you want to call it. Even that's tricky. So if that's not sorted at that level, as parents, where do you go with that? That's really hard. So I'll put that helpline in the show notes so people can reach out if they need to. But thank you ever so much for coming on.

Speaker 1: 48:01

It'd be a my pleasure pleasure to talk to you, as always, really enjoyed that. It was really interesting. I've learned loads today as well. Thank you, um, and yeah, thank you ever so much for coming on.