364 PDA Through a Problem-Solving Lens: Moving from Power Struggles to Partnership, with Stacey Curnow, LCMHC

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Penny: Welcome back, everybody. I am really honored to have with me Stacey Curnow, and we're going to talk about PDA, what PDA is, what PDA isn't, and how to really determine, or start to determine, if that might be the right fit for your kid, or if it's not. Stacey, will you start by letting everybody know who you are and what you do, and then we'll dive into it?

Stacey: Yes, thank you so much. Again, such an honor to be here. I'm Stacey Curnow. I'm the founder of Asheville Family Counseling. We like to call ourselves a one-stop shop for all of your family's needs, because we do couples counseling, family counseling, individual counseling, [00:01:00] child counseling, and parent coaching. We have a very attachment-based... the theoretical framework we lean into is attachment theory, this idea that human beings are attachment creatures, and we do best when we're in relationship, in healthy relationships that honor our autonomy and honor our interconnectedness.

I also mainly provide family and couples counseling. I'm not doing as much individual counseling right now, because we get the most traction when we do it together, since so many of us are carrying these kind of invisible scripts from what we learned from our parents, and they're not serving us, not in our love relationships, not in our familial relationships. So I really enjoy that aspect, and again, just so happy to be here.

Penny: Yeah, I'm so glad that you're here, and I'm really happy [00:02:00] to have this conversation, because we haven't talked about PDA enough on this podcast, which is kind of surprising, because I think we're recording episode number 364. We've had a lot of conversations, so it's definitely time, past time, to talk about it. Let's start with the basics. For anybody who doesn't know what PDA is, tell us what it stands for, and a little bit about it.

Stacey: So PDA stands for pathological demand avoidance. The label was created in the '80s by a researcher, a woman researcher in England who was researching kids with autism. She created this idea of PDA as a subset of autism, and it's a really widely accepted label. Again, it's not diagnosed, it's not even in [00:03:00] their equivalent in England of the DSM, the diagnostic manual. It crossed the pond maybe ten years ago, and we started hearing more about PDA in counseling circles, and now, as many people have probably noticed, everyone's talking about PDA.

I think why it's gotten traction is because, as awful as "pathological demand avoidance" sounds, when you really understand it, you see it as a very compassionate lens to look at children, because it's really identifying that this is a nervous system response to a perceived threat. So it's right there in the acronym if we lean [00:04:00] into an even more compassionate framework, which is, many counselors, me included, everyone at AFC, has kind of reframed PDA as persistent desire for autonomy. Because what we see again and again is this nervous system overwhelm, this reaction, when a child perceives a threat.

If we really drill down, it's usually a threat to their sense of autonomy. All human beings have a strong need for autonomy, that ability to make choices based on our own will, our own way of meeting the challenges we're facing. We want to feel like we're included in the solution to the problems that are affecting us. That, to me, is autonomy. So when we look at these kids who are [00:05:00] having these big reactions, if it's a perceived threat, and we're vertebrates, whether a snail or a snake or a higher-level primate, if we perceive a threat, we react in one of four ways: fight, flight, freeze, or collapse, sometimes called appease, or people-pleasing.

That's what we see in these kids. I think that's why it really resonates: if we accept that it's a nervous system response to a perceived threat, especially to autonomy, these behaviors we're seeing fall into one of those categories: fight, flight, freeze, collapse, or appease.

Penny: Yeah, I'm so glad you're talking about the nervous system, because it's so important for all the other pieces. As parents [00:06:00] of neurodivergent kids, we often worry about social things, school success, executive function, and all these skills that are lagging. But it all starts with the nervous system.

Stacey: It really does. We have to regulate first. We can't learn otherwise. These kids want to learn these skills too. They want to get along well in their families, in their social systems, and they can't learn in that state of nervous system overwhelm. We understand the brain pretty well to know that executive functioning happens in the prefrontal cortex, but that will flip offline when we're scared, overwhelmed, or exhausted, and we won't have access to that problem-solving, logical ability to project the consequences of our actions. So the more we can orient the nervous system, and understand that this is a reasonable, expected [00:07:00] response, then we can start to solve the problems that are creating that nervous system overwhelm, and completely change the trajectory. We're no longer seeing those concerning behaviors.

Penny: Let's talk a little bit about what qualifies as PDA. What would help determine if that label, for lack of a better word, is appropriate for a person's particular child?

Stacey: That's such a good question, and I really align... we'll talk more about my affiliation with Dr. Ross Greene and his collaborative and proactive solutions model. I really lean into Dr. Greene. He has a non-diagnostic stance, because his philosophy, and I really agree with it, is that diagnoses can help us have a [00:08:00] shared language, maybe even create a shared language between clinicians and parents and their children. So it kind of gets us all on the same page, which is very helpful, and it may even inform our treatment decisions. But at the end of the day, a diagnosis, a label, doesn't solve problems. And these kids who are getting this label, that doesn't help them. What helps them is helping them solve the problems, and including them in the decisions and the solutions that are going to impact their lives.

So I'm going to push back a little: I don't want to get too deep into a string of checkboxes. But if you see a child who has difficulty with transitions, who has these big reactions to a request, a demand, I like to call it a request, because no parent [00:09:00] feels like they're making a demand when they ask their child to put on their shoes so they can go to school.

But then the child perceives that as a demand that overwhelms them. From a parent's point of view, they might think, "It wasn't a demand, it was just a request. What's so hard about this?" But what I'd like parents to ask the child, rather than think this shouldn't be so hard and just focus on getting the shoes on, or saying that behavior of crying, fighting, running away is not okay, is to ask the child, "I see you're having a hard time putting on your shoes. What's making that hard?" And then it would be a totally different outcome for the parent and for the child.

Penny: Yeah. Parents intuitively know, we were talking about this before, that they'll say, "Oh, my kid has PDA."

Stacey: [00:10:00] And I'm much more interested in what it means to them, and I generally align with it, because it seems more compassionate. "Oh, my kid's nervous system gets overwhelmed in the face of demands." And I think that's perfectly acceptable. We can all look at a checklist, but that's what resonates with parents, and that's what gets us focused on what's getting in the way when a parent makes a request and the child has this big response to it.

Penny: So is it okay if we just kind of say that I think people know?

Stacey: Yeah, of course. I think the labels, the diagnoses, are information. They might open doors to different ideas, therapies, insurance coverage, things like that. They might get us [00:11:00] an IEP in school. But it's really about how it's impacting that individual kid.

Penny: And the family.

Stacey: I love that, and others, right? The teachers, the friends, because that's what we're looking at. When we look at the behaviors that we find concerning, the adults find concerning, it's because it impacts the kid or others, the family, a sibling, a classmate, the teacher. So we want to acknowledge that we want to address this, and if it helps us organize around this idea, this label, this profile, because again, it's not even an accepted diagnosis, it wouldn't reach that level for an IEP. [00:12:00] But teachers recognize it too. Educators would often see, "Oh yeah, I ask him to fill out the math worksheet, and he says he's not doing it," or he tears it up, or he hides under his desk. So they see that he's having difficulty meeting a demand or a request, and they want to help.

Penny: Yeah. And it feels so... I'm at a loss for words. It feels, I think, often disrespectful to parents. It feels like a personality problem, some would label it. I'm thinking, how do we get to a place where we can understand it and reframe it, where we can get [00:13:00] unstuck from this feeling that it creates for us, the adult on the receiving end, to actually understanding it so we can be helpful, so we can coexist in a way that works for everyone?

Stacey: I think the first thing is, again, I've mentioned having this compassionate lens toward kids many times, and I also want to be clear that we need this compassionate lens for the parents as well, because our nervous systems are always talking to each other. So if the child's nervous system gets overwhelmed, it's very likely ours is going to get overwhelmed as well. There are so many parents, I've had this experience, where I'm doing great, I'm having a great morning, and then I ask my son to put his shoes on, and he has a meltdown, and all of a sudden I'm having a terrible day. All of a sudden I'm having difficulty coping. So I really want us to include parents, teachers, any caregivers, into this compassionate lens, that we're all doing the best we can with a tricky nervous system, limited resources, the fatigue, all of the issues.

So again, I would want the parent to have this compassionate lens [00:14:00] for themselves and say, "Gosh, I see my kid's having a hard time. Now I'm having a hard time. What do we both need to meet this moment with compassion?" Because so often parents, with so many responsibilities spread so thin, are thinking, "Oh my gosh, this kid has to get his shoes on, he has to get on the bus, or else I'm going to miss work, and then I'm going to get in trouble with my boss, and that affects my livelihood." They're able to project the consequences of all these actions, which the kid, by definition, without a fully formed prefrontal cortex, isn't able to extrapolate like a parent does.

So what I really encourage is, we want to get better and better about solving these problems proactively, because in the moment, when the child is having the meltdown about putting their shoes on, it's not very likely we're going to be able to solve this problem, because the kid's not going to have [00:15:00] access to creative problem-solving.

So it's almost like we have to make a note of it: "Oh, I'm noticing my kid is having a hard time putting on their shoes. We're not going to be able to address it in this moment," but later, in a quiet moment, I'm going to say, "Hey, I noticed you had difficulty putting on your shoes. What's hard about that for you?" And they'll tell you. If they really perceive that curiosity, that compassion, they will tell you, and then you have the opportunity to share your concern: "My concern is, when it's hard for you to put your shoes on in the morning, it impacts all of us, you getting to school, me getting to work on time. So I'd really like us to solve this together. What would help you feel supported in getting your shoes on, and what would help me feel supported in us all getting out the door by 8:00 a.m.?" And then we need to have, as adults, much [00:16:00] more access to a creative problem-solving mindset, and think, "Okay, even if we've problem-solved this," and the kid says, "Well, maybe if I didn't have to put my shoes on until I got in the car," or, "Maybe if I had slip-on shoes instead of shoes with laces."

We'd problem-solve for that. But then the adult, I'd hope, would also say, "Okay, but if they can't put their shoes on in the morning, can I send them to school in socked feet?" That would be something they could explore with the school, the administration, the teachers. I've found that teachers and school administrators are much more flexible than we think. In the parent's mind at the time, it's like, he has to put his shoes on if he's going to go to [00:17:00] school. But when we've literally asked teachers, "Is it okay if they come in their socks?" they say, "Yep, that's fine, as long as he gets to school, we just want him in school." So we wouldn't want not being able to put his shoes on in the morning to be the reason he doesn't get to school. But adults, parents, kind of limit the available solutions very often.

So I like to increase, you know, when we're stressed, it's like the camera aperture really narrows, and I'm always looking for ways: how can we expand the aperture?

Penny: Yeah, getting really creative is something we talk about all the time, because if we're stuck within those systemic parameters, we can't step outside of that, and that's what our kids need. I think all kids need that, but especially neurodivergent kids who experience [00:18:00] the world differently, and we have so many systems, like education, that are fairly inflexible, and we're trying to figure out ways to help our kids succeed in those environments too.

I've had a lot of parents lately ask me, how do I ask my kid with a PDA profile to get something done? If I can't make a demand, how do I ask them to get something done? And they're wanting to then convey that to the school, to teachers, and have everybody on the same page. But it gets really tricky, I think. It's hard to ask someone to do something without any sort of threat to their autonomy, because it's our idea, it's our need. So what advice do you have around that?

Stacey: Well, that's where I even [00:19:00] call... when the conversation itself is perceived as a demand, the parent saying, "Hey, can we talk about what's hard about this so we can solve it together?" Many PDA kids will just say no right from the jump, because even asking for the conversation is a demand.

So in those cases, I say we have to slice it thinner and thinner. We're not necessarily saying, "Hey, we need to talk about this," but it could be on the drive to get boba tea, or as we're in the bookstore picking out books, in a really quiet, calm, connected moment, saying, "Hey, I've noticed that this is hard for you, when I ask you to do something." Whatever the parent's version is of "I can't even ask them." We're going to first address what makes it hard for them to have that conversation. And [00:20:00] I'm always thinking, what would make it easier? So if we're just having a nice time driving together, I can gently ask, "Hey, I've noticed... what do you think?" That goes a lot better than, "Hey, we've got to sit down and talk about this," because the kid will very often feel blindsided, and that's an immediate, "I'm in trouble, and I can't."

And that's the real framework shift: we want to see these kids not as "I won't." What we're hearing is, "No, I won't do that, no, I won't have the conversation, you can't make me." But what I really hear is "I can't." "I'm feeling overwhelmed, this is going too fast, it's too much, I need us to slow down, I need more space." So I'm always thinking, particularly with these kids, but it works with anyone, how can we slow this down, how can we create more space, less pressure? [00:21:00] We have to just slow it down. That's what works.

Penny: Yeah, and it's not patronizing. I think a lot of times we fear that if we do that, especially with older kids, teenagers, that they're going to feel like we're babying them.

Stacey: But we're not really talking about shifting how we speak to them in that sense. We're just giving more space for them to think and respond. We're slowing down what we're saying, slowing down what we're asking for. So maybe I don't need you to do three chores right now in one breath. I'm going to ask for the first step, one thing.

Penny: And I think that's what you were talking about when you said slice it thinner and thinner: how much can we back up, sort of?

Stacey: Yeah. I say a relationship is a living laboratory. If we go in as [00:22:00] scientists, with this hypothesis that maybe slower is better, maybe giving more options, maybe really asking what's hard about meeting this expectation I have, maybe then it will go better. And then I just try. And I still have my own kid. My son is now 21, but still has a PDA profile. And what I noticed is that conversations went better in the car than if I went into his room and said, "Hey, remember you were supposed to do that thing." It went much better if I was in the car and said, "Hey, I've noticed you've had a hard time doing this thing. What's hard about that?" And then what also helped was me sharing my concern, because, as I said, we're attachment creatures, we're tribal creatures, we want to get along, we want to be in a community, and as human beings we're very [00:23:00] compassionate. We really do care about the people who are in our lives.

I hear over and over, "It seems like he doesn't care at all." And I say, "Nope, that's just the nervous system saying no. He really does care." How do we create the conditions for that care to come through? Now, having said that, I think compassion is absolutely innate, that we do care about people. I don't think empathy is innate the same way; I think empathy is a skill. That ability to take the perspective of another person and really understand their experience, that takes practice, because that's a higher-level, prefrontal-cortex skill, to take on someone's perspective and understand them. But how would they develop empathy if they hadn't experienced it themselves, if they hadn't experienced their parents, caregivers, teachers as empathetic, as saying, "Hey, I can see something [00:24:00] is hard for you, and I want to understand, and I want to help you solve this problem"? When you start modeling empathy to your kids, that's when I see them learn it very quickly and reflect it back to you.

So in this problem-solving model, the collaborative and proactive solutions model Dr. Greene developed, step one is the empathy step: trying to understand your child's perspective, what's making it hard for them. Step two is you getting to share your concern about why this is hard for you. And PDA kids respond really well to this. All human beings do, but it makes more sense to them, almost, than to other kids, because PDA kids, I think, have a very strong autonomy piece, but also a justice piece. [00:25:00] If it seems unfair to them, and that's what I'd say, where they don't feel like they have the autonomy to choose and make a decision that impacts them, they're very interested to hear how their actions actually impact others.

I can't tell you the number of times I've talked to these PDA kids with their parents, and they say, "Oh, I didn't know that when I didn't do the chore, it meant you were doing it. And yeah, that's not fair. So I'm now more interested in being involved in a solution that means it's easier for me to do it, because I really don't want you to have to do it." And that's what we miss when we get into these power struggles, which I call struggles over dueling solutions: the parent saying, "You have to," [00:26:00] and the kid's solution being, "No, I don't."

But if we back it up and slow it down, we'll see these kids really do want to be included in the decisions, but also understand how their actions are impacting the people they care about. And when you're in a collaborative family, or in a classroom culture at school that's more collaborative, everybody just feels better. Everyone feels like they matter, everyone feels seen and heard, and that makes a world of difference for our nervous system, because it feels safe to be in an environment where the nervous system has a say too.

It all just boils back down to that nervous system. Every time, without exception, if we're having a concerning behavior, there's a nervous system that is under stress, and so we have [00:27:00] to become, I call it, stress detectives. We need to see the behavior as communication, almost like smoke: there's a fire somewhere, we're not sure where, and we don't know if that smoke is coming from an actual raging inferno or a piece of burnt toast. But we want to get curious about it: what's causing the smoke? And then I want to address whatever's on fire, and then we're not going to have that smoke anymore.

So, to truly see the behavior as information, in particular with these concerning behaviors, it's the smoke, it's not the fire. And if we just try to extinguish the smoke, we're still not going to address the fire. That's why we don't want to focus on the behavior and extinguishing the behavior with punishments and rewards. That's generally what people rely on, because, as I said in the very [00:28:00] beginning, this is what we learned as children. Some children, and I was one of those people, were able to respond to a punishment or reward in a way that got their parents, their teachers, the result they wanted, but for these PDA kids, that's not even a choice.

So punishments and rewards even seem stressful, seem like a demand. Because, again, if that would work, it would, but it doesn't, and it just increases this feeling of unsafety, "I'm set up to fail," is how these kids feel. Certainly not understood, certainly not supported and protected.

Penny: Yeah. Are there some ways we can foster and nurture a sense of autonomy in our day-to-day lives, in the things we're already doing? How might we help kids feel more and more like they have autonomy?

Stacey: Well, we just need to break down what autonomy is, [00:29:00] which is the ability to have a say, to act on your own will, your own volition, in a way that impacts your life. Whatever the decision being made, and you understand it's impacting their life, then you get really curious about making sure they have choice, real choices. I buck up against, very often, "Do you want to wear the blue shoes or the brown shoes? I'm giving you a choice." "Do you want to eat the chicken or the broccoli? I'm giving you a choice." And the kid might be like, "Neither one of those options works for me," but the parent thinks, "Well, I'm giving you a choice." So it's really about having those conversations about what would help you feel included, meaning we're honoring your autonomy in these decisions that are impacting your life.

And it takes time and energy to [00:30:00] have those conversations, and this is where I've heard Dr. Greene say, "Choose your hard," because it's hard to find the time and energy to have these conversations with kids, including them in the decisions that impact their lives. But it's also really hard to manage the crises that result when we don't include them in those decisions. So, choose your hard: make the time and energy to have those conversations, or make the time and energy to manage the explosions that result from not having them.

Penny: Yeah, I call it front-loading sometimes. If you do more now, there's more work in the beginning, but it's going to give you time, energy, and sanity back on the other side.

Stacey: Absolutely. Sometimes we have to really push to create the space to do it ahead of time. [00:31:00] But we're going to pay back later. Remember what I said about the living laboratory: if we switch the hypothesis from, "If I just impose enough structure, enough punishments and rewards, I'll get the behavior I want," just look at it. Is that working for you? Are you actually getting the outcome? If you were a real scientist, you wouldn't keep doing the thing that didn't get you the outcome you wanted. You would change the independent variable, what you were doing, to get that dependent variable, the outcome you want.

So again, keep trying. But that takes a lot of energy for parents who are already spread so thin. So that gets back to what I was saying earlier: can parents have so much compassion for themselves about how much they're caring, and how there's so little time, so little energy, so little support in our society for these parents to do [00:32:00] this really hard work?

And when we can say, "No, it doesn't," at least it meets our experience. I think when we give parents the message that they should be doing better when they're doing the best they can, that's very destructive. Of course that would contribute to their own nervous system overwhelm and collapse. But if we can say, "Hey, I see you're working so hard, I know we're not getting the outcomes you want, and I'm so sorry, we're all really spread so thin," I think even that is real, that's really in my experience. And there's something we can see in the brain with these fMRI studies: when we just name someone's experience, whether a child or a parent, they can relax a little bit more. And the more we can be relaxed, the more that frees up the prefrontal cortex to find a solution.

Penny: [00:33:00] There's so much more here to unpack, I know, but we're already running out of time. Is there anything else you want parents or educators who are listening to know, specific to PDA or parenting neurodivergent kids?

Stacey: Yeah, I think if I were to leave people with one thing, it's to really develop, again, I call it the stress detective, or the scientist, but it really boils down to curiosity: to be curious about your own experience, what's making this hard for me when my child is showing these concerning behaviors, and then care for that the best way you can, and then turn that lens. We naturally turn it to the kids so much, but it's kind of putting that oxygen mask on ourselves before we help the child. Curiosity and compassion are really key, and if we can just keep leaning into that, over and over again, for ourselves and for our child, we're going to get through it. It's a [00:34:00] lot, but we're going to get through it.

Penny: Absolutely. And that's what I want, to really send this message: we can figure this out together.

Stacey: Yeah, and you really will get through it. I am living proof that you will get through it. There were so many days where I thought, "I can't... I just can't do one more day, one more hour." And then I turn around, and I'm like, "Oh, my kid's an adult, and things are so much easier." How did this happen? But it does happen. We do get through it. My son is now 21, and I am still more likely to default to that nervous system overwhelm, because that was my default, that's what I learned from my parents. But he, having been introduced to this model, this new way of doing things, from an earlier age, [00:35:00] defaults more to compassion and curiosity for me. "What's hard, mom? Do you want to do the solutions thing? Let's figure it out together." So again, it's worth it. It's worth it to put it in on the front end, and you will benefit, and your child will benefit, on the back end, for sure.

Penny: Let everybody know where they can find you online or on social media. I'll link it up in the show notes as well, but tell everyone who's listening.

Stacey: Well, ashevillefamilycounseling.com is the best place. We have so many free resources. One that I think you'll make available to your listeners, I call the Defiance Decoder. It's really looking at all of those behaviors and all the things our kids say, and decoding it, translating it so we can understand it better, because in the moment of overwhelm, we're also feeling overwhelmed. So I think if [00:36:00] folks just make it to ashevillefamilycounseling.com, they're going to find all of these free resources that I hope they find very helpful.

Penny: Thank you so much for being here, for sharing some of your personal experiences and your wisdom and your time with us. I know it's valuable, and I know everyone listening has learned at least one nugget that they can take with them and create some positive change. So I appreciate you.

Stacey: Oh, thank you so much. I appreciate you and your community so much. It was an honor to be here. Take care. See everybody next time.

Penny: Take good care. Bye.