521 Transcript

Dr. Jeremy Sharp (00:00.568)
Hello everyone and welcome to the Testing Psychologist podcast. I’m your host, Dr. Jeremy Sharp, licensed psychologist, group practice owner and private practice coach.

Dr. Jeremy Sharp (00:13.09)
Many of y’all know that I have been using TherapyNotes as our practice EHR for over 10 years now. I’ve looked at others and I just keep coming back to TherapyNotes because they do it all. If you’re interested in an EHR for your practice, you can get two free months of TherapyNotes by going to thetestingpsychologist.com slash therapynotes and enter the code testing. Thanks to PAR for supporting our podcast. The Brief 2A is now available to assess executive functioning in adult clients.

It features updated norms, new forms and new reports. We’ve been using it in our practice and really like it. Learn more at parinc.com slash products slash b r i e f two a.

Folks, hey, welcome back to the Testing Psychologist. I’m really glad to be here with you. We are tackling a very interesting and potentially controversial topic today. We’re talking about pathological demand avoidance. And I have none other than Dr. Donna Henderson here, returning to the podcast to chat with me about this topic. So if you don’t know Donna, she’s done a couple of fantastic episodes on the podcast in the past, episode 119, Autism in Girls and Women.

And then I can’t remember the number, but it was a case study, our masterclass on identifying autism in girls and women. So you can search for those, but Donna’s bio, she’s been a clinical neuropsychologist for over 30 years. She’s passionate about identifying and supporting autistic individuals, particularly those who camouflage. She is co-author with Dr. Sarah Whelan and Jamel White of two books, Is This Autism? A Guide for Clinicians and Everyone Else? And Is This Autism? A Companion Guide for

diagnosing. Dr. Henderson’s professional home is the SticksRood group in Silver Spring, Maryland, where she provides neuropsych evals and consultations for children, adolescents, and adults who would like to understand themselves better. She’s a sought after lecturer on the less obvious presentations of autism, autistic girls, and women, PDA, and parenting children with complex profiles. She also provides case consultation and neurodiversity affirming training for other healthcare professionals.

Dr. Jeremy Sharp (02:26.062)
So you can get in touch with Donna in a number of ways. Those will be listed in the show notes and you’ll hear that in the episode. like I said, we talk about PDA in relatively great detail here. We talk about Donna’s journey and how she first came to discover PDA. We talk about what it is and what it isn’t. We talk about the historical origins of PDA, how to assess it, how to talk to parents about it, how to write about it in the report, all kinds of things.

This has been a long time coming and I’m really excited to share with you my conversation with Dr. Donna Henderson.

Dr. Jeremy Sharp (03:17.838)
Hey, what?

It’s good to be back. Good to see you.

Yeah, likewise, likewise. Yeah, it’s always an honor to have you on here to talk about these important topics. Especially thinking back, you know, the first time our first podcast is still my most downloaded episode, which is kind of wild, but you’ve gotten like famous since then. So I’m just glad to have some of your time to chat about something else. I really appreciate you being here.

thank you. Maybe we’ll beat that record today. Maybe this will be your most downloaded.

I hope that was, that’d be incredible. Yes. Well, it’s a pretty hot topic. We’re talking about pathological demand avoidance, of course, and we’re going to get into lots of features and factors related to that. But I’ll start with the question I always start with, which is why, essentially why care about this? You know, why is this important to you right here, right now? Yeah.

Dr. Donna Henderson (04:11.246)
Yeah, yeah, it’s a great way to start. And for me, it always starts with a kid. And in this case, the kid was somebody I saw right before the pandemic hit. So it would have been really early 2020. He was seven. I still remember him really clearly. I’ll call him Jack. And Jack was insanely cute and articulate and academically capable, smart kid. He…

had no trauma history, really supportive family, and he woke up pretty happy every day. He was a pretty happy kid, and he went to school, and pretty quickly every single day at school became wildly defiant and dysregulated, often without any clear trigger. I think, no, I know this started in kindergarten, and it continued into first grade when I saw him, and it was not, put up what I’ll call the regular level of dysregulation.

He wasn’t just refusing to do work and wandering around the classroom. He was hitting and kicking other students, hitting and kicking staff. He was flipping desks over. He was throwing his behavior charts in the trash. And there were times that teachers had to clear the classroom of all, get all the other kids out of the classroom to keep the other kids. I mean, he was wildly dysregulated. And the other

sort of main thing I quickly learned about him was that he really needed to be in charge. And I heard that from everyone. His parents told me he thinks he’s an equivalent in our household. He doesn’t realize that he’s a kid. And his first grade teacher told me that he stood in front of the classroom with her and he would say things to her like, that was an excellent lesson today.

Ha

Dr. Donna Henderson (06:00.224)
It was seven. His therapist told me he had to sit in her chair and call himself Dr. Jack through all their sessions. And I know during play, like in soccer, he had to be the referee. And I later asked him, what do you like being about the referee? And he said, well, the referee is the boss of everyone. So a real need to be in charge everywhere he went. So I saw him for testing and he was as charming as could be while we were playing. You how you just hang out for the first.

half hour or whatever and just get to know a kid and we had a great time. But as soon as I asked him to do the slightest thing for me, he would engage in some really atypical avoidant behaviors. So if I gave him a timed test, he would tell me, I’m going to do it as slowly as I can. And that’s how he would do it, as slowly as he could. He would look at my manual. would

cheat, like look at the answers, take my manual and try to read the answers and not make any effort to hide it, right, to invalidate the testing. About 15, 20 minutes in, he said, battery dead. I mean, he was done. And I said, thinking I was being so great, I said, you know, no problem, battery’s dead, you need to recharge. What do you think, five minutes or 10? And he said, an hour, battery takes an hour to charge. there was nothing I could do about it.

So anyway, I have this kiddo in my office and as soon as I started, I knew that this wasn’t anything typical. And you know how you start thinking through your differential. And so ODD went through my mind and, but I don’t diagnose ODD ever. I just don’t believe in it. I don’t think it’s helpful. Same. Okay. Glad to hear it. So that, that wasn’t an option. DMDD went through my mind because of all the meltdowns, but he didn’t have baseline irritability at all.

when things were going his way, he was a happy kid. So I did what we start to do. I researched, right? I started reading and reading and talking to people and researching. And somehow I came across this concept of PDA and I was shocked at how specific it was. The more I read about it, the more I realized it fit him to a T and it didn’t just describe his behavior, but it gave me a paradigm to understand his behavior and sort of a roadmap to what

Dr. Donna Henderson (08:23.992)
to do about it. And it was fascinating to me, very helpful to the parents, and I thought it was a one-off. I thought, that was interesting. But then a few months later, I got another kid who was really similar, and ever since then, it’s been a steady trickle. And I have come to realize that PDA is not exceedingly common, but it’s also not exceedingly rare. And I come to think of it as a really helpful concept.

and why talk about it now. You and I started talking about doing this episode, I think, two years ago, and I kind of kept avoiding it because it’s controversial and I don’t like controversy. feel like we’ve reached a tipping point here in the States. When I discovered it five years ago, almost nobody had heard of it here in the States. PDA North America didn’t even exist.

They came into being in March of 2020, and I think there were six of us listed on their website as providers who understood PDA. And now they have hundreds and hundreds of providers listed and hundreds of thousands of users on their website. It’s just become huge. So PDA is really, it’s out there now. And I regularly see like on your Facebook page and all the listservs that

You know, somebody will say, hey, I need help with a case. This kid’s really, really behaviorally dysregulated and defiant. And inevitably somebody will say, think about PDA and the original poster will go like, what? What’s that? And I just think so many clinicians either haven’t heard of it or have only vaguely heard of it. And they think it’s just a whole lot of demand avoidance. And I think that we need to really understand the concepts so we can have good.

well-informed collaborative conversations about it while we’re waiting for more research to come in. And my goal is, yeah, sorry, sorry.

Dr. Jeremy Sharp (10:21.678)
Hmm.

Dr. Jeremy Sharp (10:25.462)
No, go for it. I won’t eat it.

I was just going to say my goal is just to help people understand what the concept is, not to convince them that it’s real. not advocating for it to be in the DSM or that’s not my place. I’m just trying to explain the concept.

Yeah, yeah, that sounds great. think we’re, mean, that was a part of doing this podcast is just making sure that we’re aligned, I think, with those, that same goal. And yeah, I’m coming at it from the same direction. And it’s interesting having, I feel like I had a very similar experience to you with this whole trajectory and journey with PDA. And you’ve definitely, I think, dived into it deeper than I have, right? And just me, know, personality wise, I tend to be a skeptic with a lot of things. And so,

You know, I’ve been like, okay, okay, like, yes, I get this, okay, you know, but like you said, it’s gotten to a tipping point, I think, where there’s a lot to discuss here. Men are coming up more and more often, and I see these kids more and more often. think a lot of Yeah.

Yeah, and if they come into our office and we don’t recognize the profile, we’re not doing them good service. But also sometimes parents think they have a PDA and they don’t, and we need to help them understand why that’s not PDA. We need to be good at both sides of it.

Dr. Jeremy Sharp (11:40.226)
Yes, yes. Yeah, exactly. I always think, you you mentioned the tipping point phrase. And for me, that’s come in the last probably six months where I always think just like loosely the gauges, you know, people reaching out to me about this concept versus me kind of sharing it with people. And that’s happening. I mean, I’ve gotten, don’t even know how many emails from parents over the last six months. Like, hey, I think PDA might fit for my kid. Remember our eval from two years ago? What do you think about this?

Right. Yeah, we can’t just dismiss them out of hand. We need to be able to talk through it with them.

Right, right. Well, I think that’s a good segue. We can start talking about it. I would love to do some just foundations and basics for folks who may not know some of the history. You you alluded to this concept of here in the States versus not in the States. And that’s a part of the story. But yeah, let’s just talk about like, where did this originate? How’s it evolved over the last several years?

Sure. So it was first proposed in, I want to say it was around 1980 or maybe 81, by a researcher in the UK, Elizabeth Newsom and her colleagues. The first time they talked about it was at a conference in around 1980. And I’ve read that they didn’t have a name for it and had to like five minutes before they were supposed to speak come up with a name. So they quickly came up

this name that we’re now semi stuck with, pathological demand avoidance, and we can talk about the name in a minute. they, so that group noticed that there were kids who were autistic and were similar to each other, but were different from other autistic kids. They had more typical superficial social skills. They had a lot of demand avoidance and what they called social manipulation, which I call strategy. So that was where it started.

Dr. Donna Henderson (13:35.884)
Honestly, it really took off in the UK pretty quickly and it is really widely accepted there and in Australia and a few other places around the world. And like we said, it’s really taking off here in North America very rapidly now.

Yeah, yeah. How would you define PDA at this point?

Yeah, so I guess I always like to start by saying what it’s not. So first of all, it’s not a diagnosis, it’s a profile. I personally see it as a subtype of autism. I think that is what a lot of, how a lot of people see it, but I’m open to the idea that maybe it’s a close cousin to autism. But right now, I see it as a subtype of autism. I have never met a PDA or who is not autistic.

Hmm.

but it’s not a formal diagnosis, it’s a profile. It is not typical demand avoidance that has gotten out of control. So demand avoidance is human, right? We all avoid demands all the time. Like this morning I avoided writing a report that I just didn’t feel like writing, right? And like sometimes we’re just not in the mood for something and sometimes we’re anxious or we’re unmotivated or it requires too much executive functioning or the task is overwhelming or there’s something we’d rather.

Dr. Donna Henderson (14:52.92)
do or we have a headache or there’s sensory challenges with it. Like there are a million reasons why we all avoid demands on a regular basis. PDA is not that to an extreme degree. That’s not what it is. What differentiates PDA demand avoidance from other kinds of demand avoidance is the why. Why do they avoid demands? And the why is that they have an unusually high need for autonomy. That is challenged.

when they experience demands from other people. So it challenges their freedom. When I’m talking to younger kids, I don’t use the word autonomy, I use the word freedom, right? Because it’s not about controlling other people, it’s about having the freedom to make our own choices. Which we all have a need for autonomy, of course, but PDAers have this biological drive for autonomy that is incredibly strong and overrides their other drives and instincts and causes them to

Hmm.

Dr. Donna Henderson (15:52.768)
avoid demands because it’s a threat to them. that’s why.

call it pervasive drive for autonomy.

Exactly. And that’s what I prefer. I strongly prefer. Somebody named Tomlin Wilding came up with that quite a while ago, and I think that makes a lot more sense. Because when you call it pathological demand avoidance, I mean, first of all, the word pathological never helped anybody. It puts the focus on the demand avoidance, and that’s not the core of what PD is. The core is about the drive for autonomy. So I wish everybody would call it pervasive drive for autonomy.

Yeah

Dr. Jeremy Sharp (16:30.35)
Sure, sure. And then you mentioned through that fantastic case example that we opened with just some of the ways that it manifests in day-to-day life, but could you paint a little bit more of a picture of what this looks like? Yeah.

there. So we have core features for PDA. We don’t call them diagnostic criteria because it’s not a diagnosis, but there are core features that were originally presented by Elizabeth Newsom and her colleagues and have since been updated actually only slightly over the past few decades. And so they can be found through the PDA Society in the in the UK. But there’s basically six core features.

So the first one is resisting and avoiding the ordinary demands of life. So again, it’s not about the nature of the demand itself. It’s not that something is too hard or too boring. It’s about the fact that a demand is being placed. And how this looks different is it can be even the most minor demands. Please pass the salt. Please put your glass in the dishwasher. Please take out a pencil.

Demands that really should not cause anybody any overwhelm or difficulty. They’re so ridiculously small. They can set a PDA or off. Even demands that are implied, right? So if I say, I love you, you’re supposed to say, I love you too, right? There’s an implied, love you. There’s an implied demand there, right? Even demands that are fun and enjoyable for the kids.

Mm-hmm.

Dr. Donna Henderson (18:06.156)
I mean, this is one really clear way that PDAers are different from non-PDAers. If it’s not a PDAer and there’s a demand to do something that they love to do, play Minecraft, play with Legos, whatever it is, they’re not gonna have a reaction to that. But even if PDAers really want to do something, if somebody else demands that they do it, then they can have a really, really strong reaction, a really strong reaction.

So those are all external demands. There are also internal demands that they can have a reaction to because sometimes our body makes a demand. Like your body demands food or your body demands to use the bathroom. And they can even have reactions to those. And so that’s where you can have really disordered eating or disordered toileting and refusing to use the toilet.

They can also, they can have reactions to self-imposed demands. So they decide they’re going to do something and get themselves all set up to do it. But then that feels like a demand. And then all of a sudden they can’t do it. And so unlike non-PDA autistic kids, a lot of times they have trouble sustaining even their intense interests.

That’s really interesting. That to me, at least so far, that feels like the hardest one to swallow, so to speak. You know, if this whole thing is like a drive for autonomy and these individuals are generating their own demands, that seems counterintuitive.

Right, I don’t disagree with you, I’ve just seen it over and over again. And maybe a better way to understand that is, and especially if we’re thinking about kids, you know how a kid, let’s say a kid gets interested in Legos, and then all the adults around them say, oh, like, cool, you’re into Legos, that’s great, and here, let me buy you some Legos. And then the adults kind of start saying, why don’t you go play with your Legos, and why don’t you build something with your Legos? And maybe that’s how it comes about.

Dr. Jeremy Sharp (20:07.448)
makes sense.

Yeah, yeah. So the core of this is there’s sort of this core push-pull inside of them where they want to do the thing. They want to go to school. They want to please the adults in their lives. They don’t want to be getting in trouble all the time, right? I’m a firm believer in children and adults too well when they can, right? But there is something that stops them from being able to do it.

Yeah.

And by the way, they have incredibly high rates of school avoidance. One study estimated it, I think, at 70%. So yeah, so that’s the first core feature, that incredibly high need for autonomy that makes demands feel like a real threat.

Mm-hmm.

Dr. Donna Henderson (20:52.93)
So the second core feature is more of the external manifestation of that. So PDAers use a variety of social strategies to cope with their nervous system response to the perceived loss of autonomy that’s brought on by demands. They don’t just say no. They’ve got a whole lot of different ways of saying no. If you don’t have a PDA paradigm, you’re going to use the word manipulated.

these kids come across as manipulative. So anytime I have a new referral and the word manipulative is used by any of the adults, PDA is going to be on my differential as a possibility. If you have the PDA paradigm, you’re going to use the word equalizing. We call these equalizing behaviors. You, Jeremy, have just told me I need to, you know, whatever, speak more loudly.

I’m going to equalize against you. In order to comply with that, I’m going to say, fine, Jeremy, I need you to lower your chair. Your chair’s too high, right? I’m equalizing. I’m making us equals. So they do this in a variety of ways, some of which can come across as typical, but many of which don’t. So they might acknowledge the demand, but give excuses. Well, my mom said I’m not allowed to do math. Sorry, can’t do math. Like I had a kid last week.

whose father asked her to take some small object and put it out onto their back porch. And she said, I can’t, I don’t know how to use the back door, which was objectively false, right? Just like these excuses that make you go, what? What are you talking about? So they might comply with the demand, but do it in their own way. So they might write the sentence, but spell every word wrong or get dressed, but put all their clothes on backwards. I worked with one boy.

who his father gave me a great example. If his father said, bring your plate to the sink, the boy would do it, but loudly state the whole time, I’m bringing my fork to the sink. This is my fork, it is not my plate. And that was the only way he could do it. And even just like Jack, the little boy I talked about at the beginning, when I asked him to do time tests, he said, sure, but I’m gonna do them as slowly as I can. So complying in their own way. Actually, I have to tell you this. I just saw a kiddo

Dr. Donna Henderson (23:12.522)
really, really sweet, smart, cute 10-year-old. And she had such behavioral problems with no clear reason that, and after years of different kinds of treatments, somebody said, well, maybe there’s some history of trauma here. There’s no evidence of it. Nobody thought there was trauma, but they sent her to somebody who does trauma assessments.

Mmm, yes.

By the way, that person did a really elaborate assessment and long report and found no evidence of trauma. So when she asked this girl to draw a self-portrait, the girl said, nope, but I’ll draw a portrait of you. She complied, but in her own way, right? It’s the examples that I think really bring this to life because they’re so extreme. I had an eight-year-old who was fully potty trained when he was whatever, four years old.

Good examples. Yeah.

Dr. Donna Henderson (24:05.836)
But at this point that I saw him for the prior two years, he would only urinate on the couch, even though he was perfectly capable of getting to the bathroom. The couch was where he would urinate, right? And he was full of shame about this, and there was no medical reason for it, right? This is not being able to comply with the demand that that is where we go to the bathroom.

and that is not super uncommon for PDAers. So what other ways do they equalize? They negotiate a lot. They are master negotiators. Sure, I’ll brush my teeth if you put the toothpaste on the toothbrush. I had one kiddo who I got him through my whole battery, but only because every time I asked him to do something, he asked me to do something and I had to do it. He was testing me right back.

The things we do.

things we do, right? More than one kid say, you know, fine, we’ll do this, but we’re doing it my way basically. And, know, I’m testing on the floor, under the table or, you know, wherever they need me to do this. They use distractions so they might engage in outrageous behavior to distract from the demands. I had a kid who in the middle of testing just started, I think she was fawning at me is the word. I’m not sure how to describe it. All of a sudden she was firing.

compliments at me. Like, it started with, you’re so pretty. I was like, okay, thanks. And then it went to you have no wrinkles was the next thing she said, which is objectively false. And then, I love your hair and your glasses look good on you. And I love the pictures in your office. And at that point, I was like, wait a minute, because we just had painted our offices and the pictures were piled up in complete disarray on the floor.

Dr. Donna Henderson (25:53.312)
Like nobody in their right mind would think that looked good. And she was like, I love the way you have your pictures. I mean, was just this distraction behavior, right? And even, sorry, go ahead.

That’s a great example. Yeah, I’m just imagining you sitting there like, what is?

What’s happening? I know I have wrinkles.

Dr. Donna Henderson (26:16.844)
I got you kid, I know. So, and even like Jack, who I talked about earlier and just looking at the manual and cheating and looking at the answers right, distracting me with that. Another one they do to avoid is they physically incapacitate themselves. And it might sometimes be things that could seem sort of typical, like I’m too tired, I have a headache. But quite a lot of PDAers have a much more significant, like my legs don’t work, my arms don’t work. Like really, have you seen that?

that before I see you.

Yeah, for sure. I have heard that more than once and I’ve had kids who have had like massive medical workups because like their legs stopped working. I had one kid who just kept pretending to fall asleep in my office and at one point she also sort of slid out of her chair onto the floor and said, I could fall out of my chair at any moment, know, that sort of thing. So just that physical incapacitation. What else? role play. They sometimes become

a baby or an animal, so they might start growling at you or resort to baby talk and, you know, an animal can’t do math, a puppy can’t, you know, brush his teeth, so they incapacitate themselves that way. Or they can just go on into full-on fight or flight and they can become really aggressive, they can elope. So again, all of these sorts of things happening all the time make the adults around them use the word manipulative.

And I understand why people see it that way, but I think if you see it as equalizing, it makes a lot more sense and it’s easier for us to engage appropriately with the child and help them. So that’s second core feature.

Dr. Jeremy Sharp (27:58.156)
Yeah, I like that framework. I don’t know if we’re pulling directly from like the collaborative proactive solution stuff, know, or Ross greens or whatever, but you know, it’s that I don’t really believe that kids are manipulative in any circumstance, at least until they get older, you know, like it’s always, Hey, they’re doing the best that they can. And this is just the mechanism that they’ve developed to solve this problem or get through this situation or whatever it may be.

Right, right, I’m right there with you Jeremy, yeah, 100%. Okay, so let’s see, the third core feature is, it’s a two-parter, it’s that they have fairly typical surface social skills. So they tend to be socially motivated, typical eye contact, typical voice intonation. They really seem to like to engage with other people. So on a superficial level, you don’t hang out with them and think of autism. But.

Once you dig deeper, you realize they do not have typical social understanding in all of the autism ways. But one way that’s particularly striking and common with PDAers is they have a really atypical experience of the social hierarchy. So you know how we all from a pretty young age understand, you know, there’s a social hierarchy here, right? Teachers are above me, the principal’s above the teacher.

You could argue, you know, older kids are above me, maybe more popular kids are above me. Like that’s how the social hierarchy works. And we all sort of go with it, even when it’s annoying. But DDAers, they either don’t get the social hierarchy or more likely they logically get it, but they completely disagree with it. It makes no sense to them. They have this sort of sense of agelessness where they just, one question I ask parents all the time when I’m starting,

to wonder if a kid is a PDA or is, does she know she’s a kid? And parents of PDAs will have a big reaction to that question. They’ll say, bingo, she doesn’t know she’s a kid. I had one kid who, gosh, I don’t know, maybe she was eight. It’s hard to remember. She was in elementary school. There were four people in her family, two parents, two kids. And she firmly believed that she owned 25 % of their home and everything in it because they were all equals.

Dr. Jeremy Sharp (30:18.636)
Yeah, it’s an extreme example. I get it though.

Yeah, but I see it all the time. And when one way I get at it is by asking kids about the social hierarchy. I don’t see it that way. say, you know how grownups get to tell kids what to do? And they say, yeah. And even sometimes when that’s kind of annoying and maybe you even might know more than the grownup in that moment, but the grownup still gets to tell you what to do, yeah. How do you feel about that? Because non-PDAers won’t like it, but PDAers, they will be like,

my God, you are speaking my language. I do not like that. Like they will give you something. Right? You get me. It’s such a thing. I had one kiddo say to me when I asked that question, he got into it. He said, do you know how a long time ago black people and women didn’t have equal rights? I said, yeah. He said, well, that’s what it’s like for kids now. And I think one day kids will get our equal rights. Like he was deeply, deeply feeling it. So

They talk to adults like they are an adult. So like with Jack, he would stand in front of the class and say to the teacher, that was an excellent lesson today, right? And it throws adults off, but it’s a good question. Does he know he’s a child?

Mm-hmm. Mm-hmm. I like that question. Yeah.

Dr. Donna Henderson (31:40.526)
Yeah, so that’s for all the adults that you’re working with. And for the child, the question is, like, how do you feel about this whole idea that adults basically have power over kids? You know, let’s talk about it. I think it’s a really easy way to get at this with kids. So what else? the fourth core, are we on number four? Yeah, fourth core feature is excessive mood swings and impulsivity.

So these kids are wildly dysregulated. They can go from zero to 200 like nobody else can. I have had kids attack their parents while driving, getting out of moving cars, climbing out of second story windows, just massive, massive fight or flight, eloping. If I hear that a kid

is regularly having massive meltdowns, like massive ones, or eloping regularly in unsafe ways. PDA will be in my differential. And sometimes, quite often, the adults will be like, and there’s no trigger. We’ve looked for the antecedent, but we can’t find any regular trigger. It’s not just like transitions or sensory stuff or whatever, but usually the trigger is the last straw, right? Because stress is

is cumulative for all of us. Any parent can relate to this, right? I have three kids and you know how there are days when your kids aren’t your best friends and you know, it’s a tough day. And in your head, you’re like, okay, I can do this. I’m gonna stay calm. I’m not gonna yell. I’m not gonna lose my cool. I’m gonna be really managed about all of this. And you can only do it for so long. And if it keeps coming at you sooner or later, yes, yeah, right?

sooner or later, never me. I’ve never ever yelled at my kids. I’m sure not you, Jeremy. Yes, of course, not us. But other people might yell at their kids, right? So, like, it’s cumulative. And so the thing that happened before you snapped as a parent wasn’t necessarily the biggest thing. It was just the last straw for you. And it’s the same with kids and with PDAers. And we have to understand there’s this cumulative effect. So,

Dr. Donna Henderson (33:52.704)
If a kid respects the demand of get in the car, go to school, get out of the car, go into the classroom, sit at your seat, take the first five, six, seven demands from the teacher, sooner or later, they’re going to snap, right? And then they can have these huge, huge, huge meltdowns. And sometimes they get, for this reason, they get inappropriate early diagnoses of things like bipolar disorder, DMDD, IED, things that I don’t think make sense.

Mm-hmm. Yeah, we’re going to talk about differentials here in a bit. So I’m going to hold questions there just for the audience who might be wondering. Sure, sure. Yeah, we’ll talk about that. Want to get through the criteria.

Yeah.

Okay, so to me, those are the features. Those are the core four features. The other two I personally do not see in 100 % of PDAers. So number five is fixations, pretty much on other people. And I do see that in most PDAers, but not 100 % of them. And it may be that I’m seeing them at a young age and they haven’t developed any yet.

But these fixations can be either sort of a love fixation or a hate fixation. So a love fixation can be sort of this glomming on to a peer or a teacher or quite often a parent. They often have separation anxiety or it can be a hate fixation where they sort of have a vendetta against somebody. Like really, really hate somebody often without a clear reason to everybody around them.

Dr. Donna Henderson (35:30.858)
of these fixations. And then the last one, number six, I personally see in a lot of PDAers, but definitely not the majority. And that is that they are comfortable in role play and fantasy, sometimes to an extreme extent. And that’s where you might get them becoming a dog. And so only wanting to eat dinner.

like from a dog bowl on the floor rather than sitting with the family or becoming a baby. Or Jack actually, to get through dinner, he had to be the waiter. He was the waiter. Like he fully embodied being a waiter. And that’s how he got through having dinner with his family because it gave him a role and a way of being in charge. So we do see that a lot. So those are the core features. I have like a one page cheat sheet of them, which I can

sent to you if you want. And then there are some other things that we frequently see with PDAers, very frequently see separation anxiety. Many of them at a young age especially have a constant need for co-regulation. Like these are the kids you can’t disengage from for two seconds. Either as a parent, and the parents are often so exhausted, the teacher tells me like seriously he just follows me around during testing. You know how you need to disengage sometimes to

You know, pull out a test or write a note. don’t let you do that very much. High rates of school avoidance. yeah.

Yeah, the school avoidance really fits at least the kids that I’m thinking of. was a up so. Yeah, like I said, I want to transition to, I guess, some of the assessment and differential diagnosis and that kind of thing. But I want to ask about two things that showed up in our discussion over the last half hour or so. One is you use the term biological and I don’t know if that was like an informal use of that term or if you.

Dr. Jeremy Sharp (37:27.534)
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Let’s get back to the podcast.

Dr. Donna Henderson (39:28.014)
And we don’t have research on that as far as I know, or as far as I know, we don’t have even any good theories. But I do think we have consensus among the people who think that this is a real thing, that these kids are not neurotypical. These kids have sensory differences, they have intense interests, they have repetitive behaviors, you know, all those.

those kinds of things so that they are absolutely not neurotypical. And I think I just use the word biological drive informally to really stress that this is not a choice, that being a PDA is so hard, nobody would choose to move through the world this way. Like this is clearly their wiring.

Mm-hmm. Yeah, that’s fair. That’s fair. I appreciate you clarifying that. That’s also a perfect setup for my second question, which was, you you said pretty early on that you are in the camp of folks who consider it sort of a subtype of autism. And I know there’s some debate around that. So I’m just curious. This is more of a big picture question, I think, but could you talk through how you came to see it that way in considering all the the

literature out there and opinions and whatnot. How did you settle on?

That’s good question. think partially because everything I read, for the most part, the people who were taking this profile seriously tended to see it that way. And so I’m sure that influenced me. And probably mostly because every person of any age that I’ve met who fits this profile was also autistic. Like I’m open to any possibility, but all of them unambiguously have met the

Dr. Donna Henderson (41:11.918)
criteria for autism. So that tells me something. I’ve never met somebody who has ADHD with a PDA profile.

Yeah, yeah, I’m trying to think back to my kids that I’ve seen. mean, they’re overwhelmingly autistic as well. Yeah, I can’t remember closely enough, but yeah, I mean, there’s something to that. Just, I don’t know, I’m still on the fence with this. I’m still on the fence. I feel like over the last, I don’t know, three…

I don’t know how long. You know, I’ve really gotten into this sort of transdiagnostic belief system. I don’t know how else to describe it where, you know, I’m like really almost skeptical, like I said, of symptoms that can pop up across diagnoses, right? And then what do we do with that? And how do we like, you know, decide that a certain set of symptoms is, you know, indicative of a given diagnosis or something. But demand avoidance is one of those. And that’s what

I kind of wanted to get into that a little bit more because you distinguished like regular demand avoidance from pathological demand avoidance. then there’s like ODD and DMDD and anxiety. You know, there’s like all these things from like, like how is it not this stuff or how do we know?

Well, okay. So yeah, I want to talk about DMDD. I want to talk about ODD. So DMDD, it’s hard for me to say this publicly because again, I don’t like controversy, but I’m not convinced it’s a thing. I’m just not yet convinced it exists.

Dr. Jeremy Sharp (42:40.079)
Mm-hmm. It’s tricky. I was like, okay. Yeah, we’re just saying

But okay, yeah, let’s pretend it does exist. Let’s say, okay, it exists. I understand the concept. The concept is a kid who’s having a whole lot of meltdowns and outbursts and they have baseline irritability. So the difference is in the baseline irritability. And I have asked Ellen Liebenluft, right, who is, nobody knows more about MDD than Ellen Liebenluft. I’ve asked her on two separate occasions. So if I say to the parents, he wakes up on a Saturday morning, everything’s going his way all day long.

How’s his mood? And they say, then he’s in a great mood. He’s the happiest kid. That’s not DMDD, right? And she said, right. That’s right. So that’s what I hear with PDAers. It’s if you can, they’re not, they don’t have the baseline irritability. They have irritability when there are too many demands being placed on them. So that’s how I differentiate it from DMDD. And Ellen also does not feel that.

we should diagnose DMDD in people who are autistic either, so there’s that whole separate thing. ODD, I mean the core idea with ODD is I understand the pecking order. I understand that you get to tell me what to do. I don’t care. I just don’t want to do it or I want to stick it to you. But that’s not what PDA is. PDA is it’s not that I don’t want to comply. I want to be able to do the thing. I don’t want to keep getting in trouble, but there is something that is stopping me.

from doing it and it’s killing me. And these kids often, not always, but often have so much shame about their own behavior. And if I could soapbox about ODD for a moment, like I don’t even understand like what the implications are. If you diagnose ODD, the implication is this child needs a strict behavioral program. That’s gonna backfire. If they’re a PDA, a behavioral program’s not gonna work. It’s gonna make things worse. It doesn’t explain why the child.

Dr. Donna Henderson (44:37.29)
or adult is behaving this way. It doesn’t give you a roadmap to make things better. It doesn’t support self-understanding. Like you can’t tell a kid, well, you have ODD, that’s why your life is like this. And it blames the child and the parent, right?

Yeah, it really offers nothing as far as I’m concerned either in terms of what do we actually do with it or like practical implications or explanation or context or anything. It’s pretty useless in my

Yeah, I agree. And I would urge all clinicians to stay curious, right? To me, curiosity is the hallmark of a great clinician. And when you have kids like this on your schedule, to really stay curious and not end the sentence with, she has a lot of behaviors and she’s cranky. Like that’s not where we end the sentence. We have to be curious about why does she have these behaviors? Why is she cranky? You know, under what circumstances does she do well?

Yeah. Yeah. So how about anxiety? Talk to me about anxiety as a differential. That to me is almost the most compelling differential in this situation. Yeah. Yeah. How do you think through that?

I mean, I see all PDAers as having anxiety. So we’ll start there. It’s not either or, right? This is clearly an anxious kid. mean, any kid who’s constantly going into fight or flight, who sees threat everywhere, I mean, clearly this is an anxious kid, right? The only question to me is, is PDA one of the foundations of their anxiety?

Dr. Donna Henderson (46:10.154)
or not, and that’s where I start looking for the core features and some very specific atypical things. And if there are these very specific atypical things, like take out a pencil, sends them into a flying rage, and they become a dog and start growling at everybody, like things that just typically anxious kids don’t do. If they meet those core features, then I’m going to consider the possibility that they have the PDA profile.

Yeah, that’s fair. Yeah, kids with GAD

Exactly. Yeah, exactly.

we looking at this like a, this may be an intuitive response, but are we looking at this as a neurodevelopmental concern in the sense that kids should manifest some of these features pretty early on and they’re relatively consistent throughout the developmental period versus, this is something that’s going to show up at 13 or 16.

No, good question. I see it as neurodevelopmental. Again, I see it as either a subtype of autism or else a close cousin to autism. So very similar. And these kids, you can see the pattern from a very young age. If it starts at a later age and there was no history of it, then I would not consider that to be PDA. These are kids, the parents will tell you stories from their first year of life, how these kids wouldn’t do things, wouldn’t even eat.

Dr. Donna Henderson (47:35.422)
when they were hungry unless they could feed themselves before they even had the motor skills to feed themselves. I’ve had more than one parent tell me that. So, definitely you’re looking for a pattern, a clear and consistent pattern from an early age. I don’t talk about PDA with any particular kid lightly. I have to really be 100 % convinced. But when I think it’s there, when there’s this clear and consistent pattern, it can be incredibly helpful.

Yeah, yeah. Do we know much about the trajectory for these kiddos and does it get better? Does it get worse quote unquote over time?

Yeah, mean, like with adults. Yeah, there are certainly PDA adults, 100%. They, I believe that just like with autism and ADHD, if you have this neurotype, you’re going to have it from birth through death, you’re going to have it into adulthood. I have met people with this profile who have done actually well in adulthood. There are people who are potentially like CEOs or otherwise in charge of their lives as adults who have done very well. And

I’ve also seen some PDAers who don’t do very well at all and so many of them can’t stay in schools, public or private, and can really start, the trauma starts piling on, right? Because these kids are so deeply misunderstood from such a young age and so now you’ve got like years and years of being traumatized and misunderstood and invalidated and that can really hold them back a lot too, so.

I’ve seen it go both ways and I don’t know that there are any longitudinal studies yet. I have not come across any.

Dr. Jeremy Sharp (49:11.37)
You bring up trauma that reminds me to discuss that as a differential as well. And yeah, how do you come at that?

I mean, always that’s a rule out for us, right, when we’re thinking about any neurodevelopmental condition. And so we always ask about it, look for it. You know, in my clients, for the most part, I have not uncovered evidence of significant trauma that would explain all of these very specific behaviors. Although, you know, one could say again that being undiagnosed autistic or having a PDA profile is going to create trauma, right? So there’s that relationship as well. Yeah.

And quite often these are kids who they aren’t left alone much. Like from an early age they have such behavioral challenges. It’s not like they’re being left alone with all kinds of like extended family members and babysitters and like having, you know, being left alone with all kinds of adults. These are kids who require a lot of close supervision from their parents. So there aren’t as many opportunities for that kind of trauma from other adults. Yeah. So that’s all I can say about that.

That’s fair, that’s fair. Maybe we move to a deeper discussion just of the assessment process. You you dipped into that a little bit with a couple questions that you’ll ask, you here and there, but yeah, talk with us about what that looks like. Is it different than autism? Is it different? You know, what, what approaches?

Yeah, so I mean, you probably know I’m very interview heavy in my assessment process. You’ve got to talk to everybody, not just the parents, teachers, know, whoever else you can talk to, spouses if you’re working with adults. When I’m working with a potential PDA-er, I am aware that words are unbelievably important. Words can set them off. So I would never call myself Dr. Henderson or probably wouldn’t even say Dr. Donna because that sets up a power differential right away. I’m just Donna.

Dr. Donna Henderson (50:59.084)
Like, hey, I’m Donna, how you doing? Let’s go hang out kind of thing. And then I slightly change the wording for task instructions. So let’s say digit span instead of saying, you know, whatever we say, I’m going to say a bunch of numbers and then you say them back to me, say them just like I say them. That’s a demand. So I would slightly change that to, I’m supposed to say some numbers and the idea is for you to say them in the same order.

See, it’s a very subtle change, but it softens it like we’re in it together is my general approach, right? Once in a while, I reference my mean boss who is making me get through all these and I might get in a little bit of trouble if we don’t get through all the tests, but that’s okay, that’s not your problem, that’s my problem, that I’m okay with it. And then the kid can rescue me by getting through the test.

Part of it is in the words that you say, but a big part of it is in your nervous system. Like these kids are hypervigilant to our nervous systems. And if we are internally doing the thing that we inevitably do sometimes, like, my God, we still have like five tests to get through. We only have an hour left. I need my scores. My day is really packed. Come on kiddo, we gotta go, go, go. Like that’s not gonna work with these kids. You cannot.

be obsessed with getting all your test scores and getting through your whole battery with these kids because it may not happen and you have to accept that’s okay. The goal is not to get a bunch of test scores. The goal is to understand the child and you have to keep that in the front of your mind and manage your own nervous system and ideally enjoy it because these kids actually can be a whole lot of fun. The other major thing I would say with testing them is to really be aware of what is happening before and after testing.

So what did it take for the parents to get the kid into your office? And what happened after they left your office? What kind of meltdown was there if the kid did comply with all of your demands? Because that’s data. That’s really important data.

Dr. Jeremy Sharp (53:00.886)
Yeah, yeah. What about, like, I love all this stuff, these very, like, nuanced, practical things to do. And this is the good stuff. What about measures? Does that, is there anything out there as far as research-supported measures to?

So the only thing I know of is called the extreme demand avoidance questionnaire, the EDAQ. I I don’t particularly love it. I don’t know that I hate it. I don’t love it. I just don’t have any strong feelings about it. Again, I just think it’s about understanding the features, you know, finding the story as Marilyn Monteiro talks about, you know, understanding the child and saying, like, does this fit? Does this fit more than anything else can possibly fit? You know, so, and I do my usual autism.

battery of course with these kids.

Right, right, I gotcha. That sounds good. You mentioned a lot of the rely heavily on interviews, which I love, totally agree with that. And I’m guessing like a lot of those questions are just around these core features and eliciting stories and trying to get at the parents’ experience, the kids’ experience.

Yeah, 100%. Yeah, tell me the story. Tell me the story. And tell me an example. Give me another example. And here’s why that’s also important, Jeremy, because to understand when it’s not PDA. So I had a mom come to me and I was seeing her 16-year-old for re-eval. He had gotten an early diagnosis of autism. And at this age, she had learned about PDA and she thought he was a PDA-er.

Dr. Donna Henderson (54:36.556)
And so when I was interviewing her, there was a lot of her telling me about various meltdowns and me saying, tell me about it in detail, what happened, what happened next, give me another example. Every example she gave me had to do with the transition. His difficulty wasn’t autonomy, it was transitions. And there was a clear pattern. And once he got through the transitions, he was fine. And when I pointed that pattern out to her, it made a ton of sense to her. And she, we tried really hard.

to find any other examples and she couldn’t and it made sense. And so then we move forward with that paradigm that okay, transitions are crossing all these meltdowns.

sounds like good illustration of a non-case. Let’s talk about the communication with families and then we’ll maybe close with some intervention stuff. But I would love to hear how you present this info to families and talk with them about it, like maybe in a feedback session. I’ll leave it open for now and maybe ask more specific questions.

Yeah, so usually what I do is I talk about the autism first. As I said, I’ve never met a PDA or who’s not autistic. So first I go through that, we go through the diagnostic criteria, we’re all on board. And then I say, and I think that she may have this theoretical subtype of autism. I’m very clear, this is not a diagnosis. There is no consensus on this yet. This is something that’s been theorized, but for a few decades and it’s something that I think can be a useful.

lens for us to see her through and let me take you through the core features. And when I take them through the core features, usually there’s just huge recognition and this huge sense of nothing has made sense before. This finally makes sense. Not 100 % at the time, but I think the overwhelming majority of the time. And then of course I go through anything else that’s going on, know, and she’s anxious or has dyslexia or whatever else might be going on.

Dr. Jeremy Sharp (56:31.02)
Yes, yes, gotcha. I like that wording. Yeah, I struggle with the wording a bit because I am for better or worse, literal and concrete. A lot of the time I’m mostly a rule follower. You know, so I’m like, this is not a diagnosis, but it does fit and we think it might be real, but we’re not totally sure. And so it’s just like dancing around. So I like that. There’s a theoretical construct with some research.

Yeah, I mean, that’s what it is. And yeah, I don’t want us to have the wild, wild west of diagnosing, right? I mean, I would never refer to it as a real diagnosis. Parents have to understand the difference, right? But it can be super useful, so I’m not going to withhold it either.

Yeah, so this is a very granular question, but I get it somewhat frequently. How do you notate it in the report? Like, are you listing it under autism as a diagnosis or not, you know, under the autism umbrella?

So in my summary, I first write Jeremy is autistic and then how they meet the core features. And then I’ll write Jeremy may have a theoretical subtype of autism, commonly known as PDA. And then I’ll have a few paragraphs just describing PDA and how it fits for that child and making it clear. I literally write to be clear, this is not a diagnosis, but a theoretical subtype of autism that I think fits.

And then in the diagnosis list, it does not show up at all because it shouldn’t. I’ve said it in the summary, but it does show up in the recommendations because quite often that’s even more important than the autism piece in terms of what do we do, where do we go from here? So it shows up there.

Dr. Jeremy Sharp (58:13.848)
Great segue to recommendations. Yeah. Let’s talk about what people can do and how to support families and kids.

Sure, so I think arguably the most important thing we do is to help people understand themselves, right, of all ages. And so giving kids language to understand themselves, these kids know that they’re different and without us giving them language, they’re gonna come up with bad language of their own, right? I’m weird, I’m bad, I’m an evil person. We have to help them separate their character from their neurology, right? This is your wiring, this is not your character.

And so we make a plan for how to talk to the child about all of this, depending on the age and intellect and insight level of the child that always varies. And then educating all of the adults. And I’m sorry, because I know a lot of your listeners see adults too. And sometimes it’s an adult and it’s educating everybody who’s important in that individual’s life. Because we need to change the paradigm about how everybody’s seeing that individual. The kid’s not being a stinker. The kid…

has some really difficult challenges and we need, it’s our job to help them. So educating the adults. I find the most important intervention for PDA is parent coaching. Nothing even comes close to helping the parents understand typical parenting will not work with this child. We need to shift away from a behavioral approach more to low demand parenting, which does not mean no demand parenting, but low demand parenting and.

you know, thinking of your home as a group of nervous systems and striving for safety and building relationships and all, you know, declarative language and finding just right challenges, all of that really good stuff that parents need. So I will send them to a parent coach who knows PDA. Medication for anxiety can be extremely helpful for PDAers. And parent support is huge. I’m a strong believer that parents cannot do this alone.

Dr. Donna Henderson (01:00:12.664)
that they need some kind of community and I’m super grateful for PDA North America. There’s a reason it’s taken off and it’s not just that PDA has taken off in America, it’s a really great organization. Like they are wonderful and they have so many great offerings for parents that, or if I can find a local support group for the parents, that is really helpful too. And of course, finding the right school environment, which can be unbelievably tricky for these kids, but.

is essential. And the right school environment could be private, it could be public, it could be homeschooling, like it just depends on the situation. And it really comes down to the adults in the building and how willing they are to, you know, be collaborative with this child.

Hmm. Yeah. I don’t want to open that whole can of worms, but I’m going to briefly and then we’ll shut the can of worms. Yeah. And then, so at least with the school refusal component, you know, typically we’re talking about like an exposure with response prevention approach, you know, for kids.

Right, right, right.

Is that a direction to go with these kids or are there different spins as far as you know specifically with the school?

Dr. Donna Henderson (01:01:26.914)
Yeah, so I have a good friend who’s like a nationally known school avoidance expert. And the first time I saw him speak, he didn’t mention autism. He had a slide. He’s amazing and super well respected. Actually, it occurs to me he’s never been on your show and he should come on your show. And I was scared of him the first time I saw him speak. It was a long time ago. And his slide with co-occurring disorders with school avoidance did not have autism on it. It like everything else in the DSM but not autism. And I was too scared to say anything.

And then a few years later, I saw him speak again. And this time I screwed up my courage and said, like, you forgot autism. And he said, we don’t get a lot of autistic kids that are in our practice. He had a school avoidance practice. Well, this was quite a while ago. I know you’re making a face, but it was back when we were all missing autism right and left, right? This wasn’t like two years ago. Now he says that the majority of his school avoidance kids are autistic, and many, many of them are PDAers for sure.

And I fear I have forgotten your question.

That’s fair. That was a great story. And hopefully I get a podcast guest out of it. So know. okay. No, I was just asking if the exposure with response prevention paradigm is appropriate for these kids or if there are different twists.

just gonna make it worse because it’s about safety, right? We have to make them feel safe. And so a lot of times they go into autistic burnout and they need a period of recovery from their burnout before they can even think of going back to school. And the more we try to force it, the more dysregulated they become. But I’ll give you his name after we’re off. He would be a really great person to interview about this and more generally about, he’s a school avoidance expert.

Dr. Donna Henderson (01:03:07.65)
But also he really gets anxiety in neurodivergent kids more generally. So he’d be great for you, yeah.

Great. Yeah. Thank you. Well, let’s close with future directions. don’t know. Where do you see this research heading? Is there anything exciting coming up that we could be aware of? What’s happening in this?

So that’s a really good question and I have to answer with, I don’t know. I haven’t thought about it too much as a true ADHDer. I don’t really think into the future very much, much to my husband’s chagrin. Yeah, no, I don’t know. There does seem to be more and more research, a lot of it out of the UK, like Judy Eaton’s group, other groups, but not all of it out of the UK. So I’m excited to see where this goes in the next 10 years.

Absolutely. Yeah, me too. Me too. Well, thanks for coming on. You know, as always great conversation. Really appreciate your time and expertise. And if folks want to reach out to you, what’s the best way to do that?

Yeah, my website is drdonnahenderson, drdonnahenderson.com. My book website, my books are called Is This Autism? The website is isthisautism.com. Actually on that website, we have a number of videos for CEs and one of them is on PDA. So we do have a PDA video there. And my practice is called sticksrude.com, S-T-I-X-R-U-D for its founder, Bill Sticksrude. That’s where you can find me.

Dr. Jeremy Sharp (01:04:37.506)
Well, thanks again. I hope we talk again soon.

Thanks for having me. It’s always fun.

All right, y’all, thank you so much for tuning into this episode. Always grateful to have you here. I hope that you’d take away some information that you can implement in your practice and in your life. Any resources that we mentioned during the episode will be listed in the show notes, so make sure to check those out. If you like what you hear on the podcast, I would be so grateful if you left a review on iTunes or Spotify or wherever you listen to your podcasts. And if you’re a practice owner or aspiring practice owner,

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Dr. Jeremy Sharp (01:06:04.514)
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