Episode 30 – Could it be PDA? Exploring the signs and why it’s different from ODD with Prof Tony Attwood and Dr Michelle Garnett

Jane McFadden:.

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Welcome to the ADHD Mums podcast, a safe place for everyday Australian mums to discuss their struggles with ADHD, motherhood and life. Hello and welcome to the next episode of ADHD Mums. Today we have the very exciting guests, Michelle Garnett and Tony Atwood. Welcome to you.

Dr Michelle Garnett:

Thank you.

Prof Tony Attwood:

Thank you.

Jane McFadden:

Tony’s episode last time was just so well received. I think it was one of the most downloaded episodes we’ve ever had. I’m going to put his episode, which was over an hour, in the show notes. So if you need to, you can always refer back to that.

Most people in this space know who Professor Tony Atwood and Dr Michelle Garnett are. They are from Garnett and Atwood Events. I’m not going to go into their huge bios, just know that they are incredibly experienced and I’m always starstruck when I speak to them. Absolutely jump onto their website, but I’m not going to read the whole bios because I think we just know that they are world leaders in the area.

Prof Tony Attwood:

Okay. Thank you, Jane. That will save some time. Thank you.

Jane McFadden:

Tony and Michelle are now mortified at my introduction, but we will continue on. So one of the biggest topics that we have that people DM me about constantly, and I haven’t found the right person with the right experience level to handle PDA. And so this episode is about PDA and ADHD or just PDA generally around what it is and whether it’s a real thing.

A lot of mums get told it isn’t. And so I’ve brought on Michelle and Tony to really tackle that one for us. They do have a whole course about PDA available. I’m going to put that in the show notes as well. So I’ve just spoken to Tony and Michelle about not letting me go down too many rabbit holes and asking too many detailed questions.

So I’m going to say up front, there is a whole course because this is something that we could talk about forever.

So firstly, Tony, Michelle, what is PDA?

Prof Tony Attwood:

PDA stands for pathological demand avoidance, which is a term which may be debated and changed over time. But in essence, when a parent or teacher or another person makes a request, the ADHD autistic person may refuse to comply with that request.

Now, the question is, it may be something very easy, like putting your shoes on or go and clean your teeth, et cetera. And there seems to be a response of destruction. Oh, I can’t clean my teeth. My hand hurts. Or a compliment. Oh, mum, you look so wonderful in that new dress. And you’re thinking, oh, OK.

And for someone who’s not supposed to be very socially skilled, it can be really quite good. So there can be diversions. Then there can be obnoxious behaviour to make you leave them alone and go away. And the final state can be a tantrum.

But for a simple request that is very easy to do, they’ve done it before. And parents say, what on earth do we do? Because this is something that they should be able to do.

Jane McFadden:

Wow. I love that already. So then what would be examples of what isn’t PDA?

Dr Michelle Garnett:

Great question. So this is the tricky one, because it’s not visible what the difference is on a behavioural level. And that’s where this one is pretty confusing.

So the behaviour of defiance can look the same, whether it’s actually oppositional defiant disorder, just plain naughty kid, no label, or PDA. And so how do we know the difference?

Well, in oppositional defiance disorder, it’s mainly about an attitude around authority, that I’m just not going to do it. And it’s usually because there’s been a behavioural learning history of accidental payoffs for when I get out of stuff, being able to manipulate things, because you just don’t want to go along with the family.

There can be an intention that’s due to both the learning history, and also maybe some relationship issues in the family of just a defiant attitude. That’s what PDA is not. It’s not defiance, it’s different. It is much more related to anxiety.

So PDA looks like defiance, but it’s actually the kid in lack of capacity panic, I cannot do that. And you think, why? I just asked you to put your shoes on, you’re not going to die. However, the anxiety is, because you asked me to, therefore, when I do it, I lose control.

And if I lose control, I can’t cope. So the anxiety is driven by a need to be in control. And there’s a rigidity and a persistence about that, that is beyond typical childhood defiance and beyond ODD, oppositional defiance.

Jane McFadden:

Okay, so I’ll try not to rabbit hole too much. But quick question. I do hear a lot from mums in the Facebook group. And they’ll say, for example, I asked my child to brush their teeth, they were going to do it anyway, apparently. And then they said that I ruined it for them by asking. That’s what you’re referring to?

Dr Michelle Garnett:

That’s what we’re referring to. Yeah, absolutely. And it can be for a preferred activity sometimes, the mere fact that you’ve been asked to do it, and they love doing it. They can’t do it because on principle, you asked.

Jane McFadden:

Oh, it’s—you know what, it’s so good when you have it in your home. And you’re like, yeah, I’ve watched that a lot. That makes sense.

Okay. So a lot of people, when I describe the behaviour of some of the people that live in my house, they will say, oh, that just doesn’t sound like a real thing. That happens with my kids. That just means you need to be harder on them. Why do people kind of dismiss it?

Prof Tony Attwood:

Okay, some thoughts on this. As you say, defiance and non-compliance is characteristic of all, especially teenagers, who will want to assert their autonomy, and you’re not going to control me, etc. So it’s a naturally occurring phenomenon. But this is to a remarkable degree.

Now, the origins of this comes from parents. And parents have said, we’ve got this particular characteristic. And they started to talk to each other and started to identify a pattern. They then passed it on to clinicians.

And one of the issues is clinicians tend to be very conservative. They’re very cautious. This hasn’t come from an academic theoretical model, or anything like that. These are just neurotic, overprotective parents complaining about something. What would they know?

And then the clinicians realised, hello, when I give advice to the parents of what to do, it’s not working. I think we have something serious here. Now, clinicians tend to be about 10 years ahead of academics. And one of the things that we noticed, Michelle and I recently went to the World Congress on Research in Autism, and about 400 or 500 research articles, only one was on PDA.

So the academics are taking time, clinicians are conservative and gradually understanding. Parents are saying, we can’t wait. We need to get moving. Whatever you call it, we need help.

Jane McFadden:

I think that was really well put. I do find that too, with clinicians being conservative, same with the assessment process. Research is behind, clinicians are a bit delayed or conservative. And then you’ve got a heap of parents that are here like, but I’m seeing this online or on social media, but I can’t get onto the NDIS because I’m not getting assessed.

But anyway, that’s another story. But that makes complete sense. So what would be some examples that we might see our children do that is actually PDA?

Dr Michelle Garnett:

I think the real differential here, or if we’re trying to differentiate, is this just naughty kid or oppositional defiance, or we can all engage in demand avoidance behavior, right? I mean, if you’re anxious, you avoid stuff. If you’re depressed, you avoid stuff. So we’re all avoiding demands at some point.

But I think the ones that are really a clincher when you’re looking for the PDA profile, is that the person can’t do it, and they can’t do it because of their anxiety. And therefore, it means that they’re going to avoid doing things even they want to do.

So for example, they won’t get dressed to go out to a destination, even though they want to go to the destination. And you’re sitting there going, but you love that. And if we could just get you into your gear and in the car, you’ll have so much fun. And you’re just bewildered at the refusal, because it’s almost self-sabotaging.

It just looks insane. You’re going to love this. What’s wrong with you? But you almost have to trick them into the car, you know, by making it a choice or making a game or getting a puppet to ask them, because that’s the only way.

So one of the features is, it’s a behavior where you’re thinking, but this isn’t avoidance of a chore, and you really like the activity. And yet we’ve got avoidance. That’s a cause for pause. That could be PDA.

Another one is if the child is making elaborate excuses. They’re often very eloquent kids and verbally amazing. And they love language often. And so the excuses can be quite extreme and funny. You know, they’ll go to extreme lengths. They will tell you about their broken legs and a dinosaur ate their hands.

So they can’t do the washing up. And it’s kind of funny. And it can be very engaging. And it means that you get distracted often from the actual thing you’re asking, because they are so creative.

And another one is the pervasiveness of the demand avoidance. So it happens so often, as I said, it’s a really, it’s like an obsession. They just are hyper focused on refusal.

Meltdowns are huge in PDA. Not for all, because some of the kids melt down internally. So it looks more like a shutdown, which looks like under the covers, the doona’s over their head, and they’re just not out in the world, they’re not engaging.

Or it could just be that meltdown over a very simple task, like being asked to brush their teeth or go to bed, or eat their breakfast.

And the last one that I would cover is that they can engage in very elaborate role play. So tell you, for example, I’m not a child, I’m the parent. So I tell you what to do. You don’t tell me what to do.

So you’ve got all these creative and playful and very imaginative ways of getting out of tasks. That’s not ODD. They don’t do that. This is a different operative, that the driver is anxiety. So they’ll do anything. The motivation is high to get out of the task, because they’re avoiding anxiety.

 

Jane McFadden:

Oh, that was amazing, to be honest. One of my kids has been diagnosed with ODD, and he’s so cheeky and fun-loving and curious. I could never understand why he was diagnosed with ODD. And when you’re talking about the elaborate examples, that’s what he’s like. He’ll pull himself along the ground like a worm and say that something ate his legs, and it’ll be something that he wants to go to. It’ll be a treat for him.

And I’ll just be there going, why do I have to beg you to go to something that you want to go to? It’s infuriating. And there’s elaborate stories for like two hours, and then we don’t even get to go. And I just think, what is that? So I really appreciate that example, because you’re right. It’s that sweet, fun-loving, hilarious nature, and it sidetracks me. You’re correct. It completely sidetracks me.

Dr Michelle Garnett:

Yeah. Thank you, Jane. Thank you. It’s lovely to hear your experience. So your experiences resonate so much with my own. I really relate, and I have such love for these kids too, because of that.

They’re often very fun-loving, creative, lighthearted. And that’s a lovely piece, because if we can join at that level, obviously, if you’re laughing and having fun, and you’re into the fantasy and role play, the anxiety goes down. That’s just a beautiful part of who they are. And you’ve just illustrated it wonderfully. Thank you.

Jane McFadden:

What I’ve noticed before we went down the diagnosis path, which took a while, because obviously, when you’re from a neurodiverse background, you don’t see that there’s any issues, right? So when it was first approached to me that there was something going on, I was like, oh no, I think they’re fine, actually, because that was my normal.

And so I did go down the road of a lot of neurotypical parenting styles that were working for others at that time. And I didn’t find that they worked. Why do you think the neurotypical styles of parenting don’t work on a child that has PDA?

Prof Tony Attwood:

Yeah, a very good question. And it’s very infuriating for parents. You’ve got to look at what is motivating the behavior, and it’s to cope with anxiety. It’s not revenge, in many ways. It’s not deliberately to annoy you, et cetera. There’s no cruel, malicious, malevolent streak to it at all.

Anxiety is so high that you’re desperate to be able to control your experiences. Now, the problem is the level of anxiety is so great. It’s going to make the mind very rigid and unreasonable, because when parents use reason, you’ve got to assume that the child is prepared to be reasonable.

Often with the intensity of the anxiety, it is so great it overrides everything else. And this is what’s infuriating to parents. We can’t motivate you by rewards and punishments. I can threaten to chop your hands off or promise you a million dollars. It won’t change.

So the attitude for parents needs to be one of how do I manage the anxiety? When this occurs, it’s a sign of anxiety, not belligerence. And you have to focus on the anxiety in a variety of ways to be successful.

Jane McFadden:

Yeah, okay. I suppose standing over them and saying, get in the car or we won’t go, rewards and punishment. I have found that that didn’t work.

Final question, Tony, Michelle, what works with PDA and how can we best support them?

Dr Michelle Garnett:

Great question. Leading well into there by absolutely recognizing what doesn’t work and desperate to find something that does. And this is another interesting aspect of PDA. But once you start using the PDA approach, and I’ll just talk about what that is in a sec, it works. And that’s almost like the diagnostic clincher. So if it works, you have PDA, essentially, it’s not ODD.

We find that what is very important is that we’re shifting gears as a parent, teacher, professional, to the normal social hierarchy, of course, is that as adults, we’re kind of the commanders of the ship. And we have an authoritative role, and it’s firm and caring, but it’s very much, we’re in control, we’re the ones at the top. PDAs don’t work that way.

What we need to do instead is establish a relationship based on collaboration and support. So it’s actually quite confronting. It’s not the dominant paradigm of how to parent these kids. And yet it works, it provides safety, because suddenly the child, who often doesn’t, in their anxiety, recognize the social hierarchy anyway, it’s just we’re all people.

And we all have a say, particularly me, I have a say, you know, and when we’re anxious, we’ve become very, very egocentric and self-focused because we’re in survival mode. And so as parents, we can give choices, offer flexibility to our kids and actually work with them.

Rome wasn’t built in a day. So we’re not seeking compliance with everything. We work out in the family, what are the priorities? And these are the ones we’re going to work on together and get the kid involved in that discussion.

It’s child-led in a way. And of course, having said that, the safety issues here, and the parent has the big picture, which the child doesn’t have. So we need to also be part of guiding the child, but giving choices around that.

Because if the child can have only two choices, but you choose the choices, you’re starting to be able to give that guidance. It’s not just open slather. You know, what we have for dinner, ice cream or lollies, kid’s going to be happy days, but we’re going to have to give them the nutritious choices.

And it’s a bit like that with school, with homework, with chores, but it’s collaborative. We found that the language works well. Raising requests in a way that’s an indirect request. So rather than saying, get dressed now, you may say, would you prefer to use the bathroom first to do your teeth or get dressed?

Or you might say, shall we get dressed together? It’s very invitational. These are the sorts of strategies that we find. They’re very validating, they’re very sane, and they’re collaborative. And they work with PDAs.

Jane McFadden:

Wow. So question, is PDA something that people or children grow out of, or does this continue on to adulthood?

Prof Tony Attwood:

We’re only just discovering this. It’s something that may diminish over time with maturity of the PDA, realizing this is a problem. It’s inhibiting my quality of life, relationships, et cetera. I must think before I react, but it can still continue into the adult years.

Our research on this is just information from interviewing adult PDAs. How has this affected your life? And for some, it has been an issue in terms of employment. They’ve been self-employed. Those sorts of things may be a practical solution.

Jane McFadden:

Yeah, absolutely. My husband is like this actually. So if I say to him directly, I need you to go outside and mow the lawn today, he will not do it. But if I say to him, gee, the lawn’s getting a bit long. I really need to think about when I can do that.

Give him 24 hours, he will mow it. I’ve just learned over time, a quick way to upset him is to tell him and give him a timeframe, which actually is a really way of doing relationship counseling where they say, communicate the expectation, give a timeframe. And whenever I do that, he just gets pissed off.

So I’ve noticed if I just tell him about a problem I’m having and leave it, he will choose to help, but it has to be his choice.

Prof Tony Attwood:

Key point, it has to be his choice. He has to feel that he has some control in the situation.

Now, we’ve talked about some of the strategies here, but it is also looking at the issue. This person has high levels of anxiety, need to be treated. Because if you can reduce the overall level of anxiety, you don’t need to engage in this behavior so much.

Jane McFadden:

Okay. So I understand you are not a psychiatrist, but does medication help at all in some of this?

Dr Michelle Garnett:

I think if PDA is part of the profile, I would definitely get a psychiatrist on board because one of the factors is it’s absolutely commonly coming along with ADHD. And ADHD plays into that anxiety a lot. So we may well be able to see a reduction of anxiety when the person has their ADHD managed with medication.

For example, a PDA research group that has colleagues across the United States and the UK, they’re really finding this, that once they get ADHD managed, PDA is much more manageable for the person. Intuniv for example, seems to be very helpful.

Now with the anxiety medications, sadly for neurodivergent people, the SSRIs generally are not well tolerated. So this is where you need to work with a psychiatrist to find that there may well be an anti-anxiety medication that will be tolerated, but it needs some effort. We’re not going to get that neurotypical response here. It’s metabolized differently.

Tony and I are now discussing autistic anxiety, and this is sometimes not touched by medication, which is very sad. However, fortunately there are other ways we can address anxiety in terms of psychology, as you know, and that’s what we would turn to if medication can’t be of assistance.

Jane McFadden:

Yeah. And it’s really sad for the children and obviously adults. Like I was medicated very heavily with SSRIs as a child, which have now been taken off the market. And, you know, when you were on them, I was on them for like three years, very heavy doses, you’re getting all the side effects and I wasn’t getting better.

And so then you have a feeling as a child, I did, of what’s wrong with me. I’m still not improving. I’m doing all of these things, which is one of the reasons I work in this field, because I’m so passionate about people getting diagnosed correctly with having had such an awful experience with SSRIs.

So I appreciate you saying that because it kind of validates my experience. I was like, well, what’s wrong with me? Why am I not getting better?

Dr Michelle Garnett:

Yeah, nothing wrong with you, just neurodivergence playing out and very common as a neurodivergent woman, SSRIs not for me.

I’d like to add one thing here. There is literature starting to come out, some published by Jessica Kingsley Publishers, to introduce the PDA child to PDA. There are a number of books and they will explore this characteristic and explain it because the child, as you say, will know they’re different.

Their view is, yeah, this is causing a lot of problems and what are we going to do about it? I don’t want to continue like this. So it’s including the child themselves or teenager in the process, but there are now books just for them in their level of language and intellectual development to explain it.

Jane McFadden:

Oh, that’s great news. This has been such a great episode. If you’d like to know more about PDA, I certainly do. It’s funny, I think I’ve bought all of the courses that you’ve got. I would have said all. PDA is probably the one I haven’t bought.

And now I’m here going, oh my God, how am I going to stop myself not going to go down a PDA rabbit hole today? Because I did not realize that this was happening in my home, but everything you said, I just can’t understand how I’ve missed it.

Prof Tony Attwood:

Wow. Jane, I just want to let you know this year for the first time, we’ve actually got a PDA course that’s an introduction, half day, three hours. And that’s, if this is a new journey, it’s bringing the person up to date with the research, understanding where we’re at now.

There’s still a lot of questions that have to be answered by research, but clinicians are helping. And our second course is also three hours, and this is called PDA Going Deeper. And that’s where we’re really trying to dive into what do we do? How do we support, assist our PDAs, whether they’re our loved ones at home or our students at school, or of course, our psychologists, OTs, VCs, psychiatrists, et cetera.

Jane McFadden:

So I’m so glad you found them. It’s going to be such a great investment of time, because the amount of time that I spend trying to figure out what’s going on, trying to figure out what works, backtracking it, going over it, thinking about it at night, I’m just thinking, well, that investment of my time daily, if I could actually do something that worked, that would be life-changing, because I spend so much time on it, and a lot of it is hit and miss, because I don’t quite get what’s going on.

Dr Michelle Garnett:

Absolutely. I agree. And we are fortunate, as you know, Tony and I, to be in the job that is our passion. And so therefore, we can go on deep rabbit holes as much as we like.

Tony just wrote a huge, wonderful two blogs on a Sunday on trauma. And so we can go to the research, we can find out about PDA, and of course, we’re in it clinically and have lived experience. So I agree, it’s really good to be able to just get that in one capsule, if you like, of time and answer those questions.

So we’re really happy to bring it, and I hope it’ll be helpful to you, Jane, and to anyone listening here. We’ve had great feedback from these courses, so we’re delighted with them to date.

Jane McFadden:

Thank you. Yeah, there’s such little information about what to do. We all know there’s lots of problems and how hard it is, but strategy-wise, I still think we’ve got that gap. Thank you so much for your time.

I really appreciate it. No one needs to worry. If you can’t remember some of this stuff, I have a terrible audio memory. All of the information will be in the show notes, so you can always check it out there or jump across to Michelle and Garnett’s website, which will also be listed.

Thank you so much.

Dr Michelle Garnett:

Thank you.

Prof Tony Attwood:

Thank you, Jane. Take care.