What I Wish My Family Knew About Pathological Demand Avoidance / Pervasive Drive for Autonomy (PDA)

My name is Tessa Watkins. I’m an adult. I’m autistic and I’m also a parent. I have PDA profile.

My name is Liz Peace. I’m working as a counselor since 2015. I started working with men who were seeking re-entry from incarceration and there I spent a lot of time working with trauma and adults as well. From there in practice for a bit and then went on to my own practice in 2023 counseling specializes in working with neurodiversities.

So today we’re talking about PDA

PDA! Pathological Demand Avoidance also known as the Pervasive Drive for Autonomy

So PDA was first discussed in the 1980s

by Elizabeth Newson who is a psychologist based out of the UK but it wasn’t formally published about in any peer-reviewed research until 2003. So right now the state of research on PDA is not very robust and the studies that do exist, some of them aren’t the best quality. And so that’s one of the major reasons why we don’t see PDA as an official diagnosis. It’s not in DSM, which is the diagnostic manual that we use here, or the IC, which is the manual that’s used globally. And so we will be approaching PDA with the understanding of it as a behavioral profile rather than a diagnosis. To clarify a little bit more about what a behavioral profile is, basically we’re just talking cluster of symptoms that exist within a neurodevelopmental disorder. And so with PDA, research shows that it’s most common in individuals who have an autism diagnosis. So about one in five individuals with an autism diagnosis show some characteristics of PDA while about one in 25 show all characteristics. But it’s not just limited to autism. So people with other neurodedevelopmental disorders especially ADHD can also have the characteristics of PDA

So the reason why it has two names is because the first original name was really critical, you know Pathological Demand Avoidance and the people that particularly identified as Pathological or PDA
We prefer a more positive approach. The word pathological, a lot of common folk usually think of a pathological lies. So there was really negative connotation with that. So with pervasive drive you kind of remove that and essentially pathological demand avoidance is
avoiding demands that was more like a symptom or a response and not what we actually experienced. So we wanted to be more internal and described, you know who we are, a little bit more about us, as opposed to just one piece of it, one symptom or one behavioral response.

So one thing I also want to take a moment to address is the difference between PDA and ODD which is oppositional defiance disorder. So in the United States we have ODD as a diagnostic option within the DSM. And so a lot of times people who fit some of these characteristics of having a profile will receive a diagnosis like ODD because that’s kind of the closest to the line thing that’s available
currently. The difference being though is that with PDA, the behaviors and the symptoms can kind of change across context. So typically they’re triggered when there’s a perceived demand that’s introduced. Whereas in ODD it’s a lot more consistent across context. And so that’s one of the big defining factors

In terms of characteristics.

The language here reflects more of the deficit model which Tessa kind of addressed with the two different names. A lot of this language comes from the research that was done under the name of Pathological symptoms.

So for people who have characteristics of PDA, the dance can be conceptualized as a threat to autonomy and they can trigger an anxious response and that anxious response often leads to behaviors that act as a way for them to regain sense of control. There can be avoidance of everyday demands and these demands can be direct demands. So something like you know brush your teeth, do your homework. They can be internal demands. So sometimes individuals with PDA have difficulty with things like autonomic trigger cues or social cues and they can also be more indirect

cues. So examples for like adults with PDA, paying bills, having to buy groceries. So things that like you kind of know you have to do but aren’t being explicitly asked. As far as social strategies, a lot of times we see individuals use tactics like distraction, negotiation, or kind of like blame shifting to deal with their demands. And the social strategies are one element that a lot of the research says really differentiates PDA from traditional autism in a way because with traditional autism we often think of like censored or social deficits. And so we think of those individuals as often times not being like socially skilled for us. Individuals with PDA are seen as being pretty socially skilled in this area. Also there’s what they call Surface Sociability with underlying social difference. And what they mean by that is that often times an individual with PDA can come across as completely sociable, but sometimes they struggle with maintaining deep relationships and forming deeper relationships. You’ll also see role play and fantasy as regulatory tools. And for some kids, this especially can play out as taking on the role of an authority figure. So you’ll see like kids in a school setting that maybe take on the role as a teacher with other students or kids in the home might take on like a parent role with their siblings.

In tangent. My seven-year-old last night didn’t want to go to bed as usual. So I was testing this presentation on her. She didn’t want to go to bed. And one of the things I asked was:
“Do you know what PDA is?” And she’s like, “No”, and I was like: “of course! Glad you asked!😀 Anxiety driven need for control.” And she’s like, “What does that mean?” Like, “Well, you don’t want to go to bed. You want to stay awake. You want to have control of this situation. You don’t want me to tell you to go to bed.” And of course, she’s, you know, just generally avoiding going to bed.

She asked to use my phone to text her friend Sydney. I’m like, “No, it’s like 9:00 at night.” She said. She asked if she could text
Dad again like he’s just in the basement. You can just go down there. He’s also working and then when I got to this part, she said no.

So, I don’t know what happened after that. I kind of forget but she left the room and stopped.

because I think I just I talk too much.

So part of PDA I want to explain, just some of these theories that some of my friends and colleagues have come up with. A lot of people are probably familiar with Spoon Theory. It was created by Christine Miserandino in 2003. So it’s been around for a while and my interpretation of Spoon Theory is that it’s based on energy and how it’s energy spent. So the concept is that you each spoon represents just some arbitrary amount of energy. It’s nonspecific. So you can spend those spoons however you want but you do have a finite amount of spoons. So people that are disabled probably have less spoons than people who are not disabled. and what we have to choose between what we want to spend ourselves on tasks like laundry, playing video games and doing the dishes. Now, they also have costs associated with these. So, these are my interpretations of costs because I really hate doing the dishes and my husband is like that makes sense that I don’t do that. I actually do this like maybe once but this: I do that a lot. I love Minecraft. So we get to choose where we spend our spoons. If I actually had this amount of spoons, there’s no way I could do both laundry and dishes obviously. But I have enough video games to get more. But with spoons, they can be refillable if with selfcare like take some medicine to help with your back pain, take a nap, sleep through the night.
Anything you do to get selfcare, that is how you can get your Spoons back. Sometimes they just don’t work, that sucks! Sorry, not getting done.

So then we have Ticket Theory. It’s a bit newer and it’s by my friend Davidson. She created this one in 2021. It’s based on critical tickets, like you’ve got tickets that you go to

ride Ferris wheel. You’ve got tickets for the
merry-go-round, the hall of mirrors. I like to think that her tickets represent motivation. It’s more internal. So we have the energy that use Spoons.

The tickets that are motivation. With motivation, you don’t have a choice. If it inspires you to be motivated, that happens whenever it happens. You don’t need to choose when that happens or how it happens. They are also specific. I can’t choose what they are for. So if I have a ticket for laundry, I’m motivated to do laundry. I’m in a cleaning mood. Good for me. If I’m very motivated to play video games because I have an idea for a build for an automatic farm in Minecraft, I’m going to have a lot of tickets for that. And maybe let’s hope for a ticket for washing dishes. You know, this is kind of that half motivational time for us.

But the tickets will expire if they go unused. So, if I haven’t been in the mood

for cleaning, but let’s say I’m happen to be on vacation for some reason. I’m not even home.

I can’t clean my house right now. I clean this weird apartment place that I’m in.

I clean other people’s houses. I’ve done that. I think one that’s kind of relatable,

But anyway, that theory is expired

because then my house still doesn’t get cleaned. But also, you can do sharable tickets.
they are non-refundable, non transferable, no cash back, but you can get sharable tickets if you have someone that’s your body double or if there’s just happens to be something, you know, inspirational from somebody else that can help activate your intrinsic motivation. External motivation? Let’s

but, do we have to choose between the theories? No. I think over there. I like the idea that we can have our spoons and our tickets. Spoons being the energy and tickets being the motivation.

So if I have a ticket for folding laundry, awesome! And I have spoons for awesome. Spoons for folding laundry. Double awesome! Because then laundry is actually going to get done. That happens.

If I have a lot of spoons or tickets, I have to kind of choose. I don’t have enough spoons for

washing the dishes, but I am in a clean mood. I want to wash the dishes, but I can’t. Sucks to be me, but I’m going to sit play video games for two years.

When it comes to PDA, I feel like this is accurately reflective of me. I don’t know about everybody else, but at least me and a lot of the challenges

with PDA is when this scenario is switched. I might have the service, but I don’t have the motivation. And if I was a kid or if I was just my husband’s wife, he would say, “Why did you play video games when you could just wash the dishes?” I can’t.

There is a whole demotivation for people that like
to hyperfocus. I just can’t. I’m so drawn into I cannot think about anything else, unless I can get the step out of the way like a measuring blocker and move that step, complete these tickets hopefully before that ticket expires. And I think like the amount of tickets also helps me identify how strong of a pull there is in my mind to do something,
to do a specific task. So that might be in a bit of a cleaning mood. Maybe I’m specifically in a cleaning mood for the kitchen and never the bathroom.

So we have Stages of a PDA. when I get into this, we’ll talk about some of these stuff.

But yeah, so basically what we try to do is break down a PDA episode

into stages just to help with understanding and
also recognition. If you or someone that you

care about is dealing with and so the first thing
that happens is a trigger. So this is typically when

a demand is introduced. So again like
I said earlier it can be a direct demand, it could be an indirect demand, it could be an internal demand. So once that happens the volcano kind of starts, everything starts. so I did direct demand. There was usually some of the recusant that just directly asks you let’s do something. For example, I was in a cleaning mood I don’t know three months ago and then my husband was at home so that’s probably why. And when he did get home, he said: “wow! you did such a great job. You think you could do this fun part?” “No. Nope. Nope. Not going to finish it now. You asked. You acknowledge me. You perceived me. I don’t don’t want that so now it’s just nope.” The indirect language, he is British so he’s very polite. So he’ll think like: “huh! It’s getting cold isn’t it?” Yes it is sir. It’s cold. What do you want me to do about that? I don’t know. I can’t guess what’s in your brain. So using things like hinting if you’re a person that understands
guesser culture versus asker culture.
I am definitely asker. He’s definitely guesser.
Things like that are indirect.

I’m trying to imply a demand or I’m trying to say a demand but without saying it.

Then finally, the internalized one. That one is when you put demands on yourself. Nothing else is out there. But it’s also perception, perfectionism, some of those weird goals that you set for yourself. My favorite one was the speed limit sign. Sorry, I pulled it too many times. But it was actually while I was thinking of what to say for this kind of stuff that I drive my kid to school, and on the way to school, they have one of these stop sign, not stop signs, the speed limit signs with the solar panels that tells you just how fast you’re going.

No other context. Now, I think most standard distant
brain might say, oh, this sign is telling me to slow down because it’s acknowledging that I’m going too fast. Because there is subtle indications that if it’s blinking, it means you’re going faster than speed. If it’s just a steady speed or if it’s just a steady number, it means you’re under the speed limit. and it does not acknowledge the margin of 10 miles or over. But that’s not what I think of that when I see that sign. I would pass a sign. I’m like: you’re telling me it’s 25? no, I am intentionally going to drive exactly 26 miles per hour this entire way and I’m going to tell you what to say little sign. That could be 30 could be 20. I don’t care. I just choose a number before I see that sign and I’m going to tell that sign

what it’s going to say. I’m not going to
let it tell me what it says. And then one day it stopped working and I was just angry.
I was like what??? The kid has no idea what’s going on.
And as I’m turning the corner I’m like:
why did I just get so worked up over this stupid sign not working? I had built up this relationship with an inanimate object. I don’t know if standard breaks do that but I do that and that relationship the our rules for engagement were violated because it stopped working. So I got angry and that triggered and that went through the whole stages of this being able to get to me. It was very speedy though because I’m an adult with coping mechanisms and was able to do all of it within the drive to school but not this one.

the next stage we describe as kind of the swell. So this is when things start really heating up. This is when the anxiety really starts to rise. And so this is where we might see some of those like what they describe as like social avoidant behaviors start to come in. We might see like some deflecting, some distracting, stuff like that, just to try and take some of the heat off of the situation to try to in a way prevent the eruption. I feel like the swell: it is the one that makes the biggest difference as you get older and you mature emotionally from childhood to adulthood and just in general because as a little kid, I would go from 0 to 60 in an instant. I see my kid she goes from 0 to 60 almost instantaneously. She’s been an OT for (she’s seven now)

like two and a half. So, she’s got a lot better mechanisms than I did back then. So, she now goes to 0 to 60 in a way. I sometimes do but
not always. For me, I have a whole mental gymnastics that I perform during this process. And it wasn’t even just mental gymnastics,

I also take medication to help with this fight or flight reasoning. So, before I would feel like it was (I only knew two emotions). I would be angry and not angry. The other emotions too, but on the angry spectrum, it was just rage and normal. When I started taking medication to help manage my explosive emotions because when it comes to fight or flight I am fight,

so is my child. I haven’t begged anyone since I was 18 except my kid, that doesn’t count.

But with the swelling part, it was with medication. So what happened was that I started to actually feel a spectrum. And when I would, during these moments of let me get to the next part, the actual explosion point. A lot of the times I did not feel in control. I often felt like, here’s this body that is just screaming, shouting, kicking, doing whatever. And my consciousness was just kind of back here, just
existing. It didn’t actually have any thoughts or feelings. It just existed. And as I got older, this bond looper actually started to think, hey, this isn’t cool. You know, I was starting to actually separate myself from myself. I don’t know if that makes sense, but it was in a sense where I was actually starting to also feel more and more time during the swelling. So I could feel irritation, I could feel upset, I could feel disappointment. There was more ranges to my emotions other than just rage and not. There was a whole spectrum that I had never known before and then the explosion time because I do occasionally maybe once or twice a year now. If I get to an explosion point, it’s not as, I can’t say it’s not as disruptive, it’s not as disturbed. I am slightly more in control but I I feel like this bystander/observer consciousness started to evolve. Something that I’ve been talking with my therapist in that, now this is in the back, it’s like they can for the first time, they actually spoke in my mind. I don’t really think in thought, I have visuals in my mind but for the first time,

there was, you know, thoughts and feelings like an entity forming outside of this rage monster and during that time, like the last one I had,
it’s like: why are we doing this? One of my mantras at home to help bring me out of this is: we don’t hurt people we love. And that was one of the things that this person acts like we don’t hurt people we love. Why are we doing this? Why are we angry? And it allows me to start into the next stage which is where we collapse before we finally reach into the resolution, which is that. The resolution that is long after the moment has passed and now we’re actually trying to heal and learn from it because you can’t do that while you’re pissed off. That’s not a burning brain. You can’t try and teach kids while they’re screaming at you. You need to make yourself safe. Make them safe. Ride it out if you can. You know, whatever tools and strategies you have and then resolve the issues after. Yeah. So with the explosion point and collapse, I think of those within terms of the meltdown/shutdown model. So within autism research, there’s a lot of talk about the way that autistic individualities experience extreme emotions, extreme situations. And there’s talk about one of those being kind of the more outward behavioral meltdown, which is something that’s very observable you can see happen, and then more of an internal shutdown, which is the individual going more inside of themselves

to cope. And so, with someone who has PDA

often you see a little bit of both. You see kind of more outward behavior which is like the explosion. That’s where, you know, there’s maybe crying, maybe there’s yelling. There’s just kind of physical reactions. Yeah. So, and then with collapse, it hits a point where the explosion point, it kind of burns out. And so there’s so much energy that goes into hitting that explosion point that there’s kind of a come down here with the collapse where, you know, not only is it the more inward experience and sometimes it’s also related to shame that people feel from experiencing the explosion point from having witness that. That also can cause people to turn inward and just collapse.
And with resolution, like Tessa said that’s one really important point because I think sometimes when you’re especially in the moment with a kid when you start to get here and here, sometimes there can be temptation to try to find resolutions. Be like okay, what do you need? What can we do? Can we resolve this? Is everything okay? Once we hit these points, it’s a lot more helpful to reduce verbal demand when you’re trying to support someone who’s having an episode because that often takes a lot of energy for them to respond verbally, to interpret verbal commands, verbal input. And so just kind of holding up on that stuff until resolution, which is, you know, we want to wait until both parties are regulated. So it’s definitely two-party event. So making sure that both people are regulated, both people are willing to engage and then working on resolution from there and intentional. Yeah, I don’t want to forget about that because then you just repeat

the first button. Cause I pulled it from my point of view internally. I’m going to go through it again but as a parent watching my seven-year-old going through this. So we have various triggers but when she’s swelling, this is the critical time where I know that her lizard brain is going to take over her hormones. She’s pumping out adrenaline and she’s got very very short time before those hormones overwhelm her brain and
she’s goes into an episode. So this is not the time bargain and demand more. This is the time to just
completely deescalate. And I had to explain this to my husband because he thought it was permissive.
It’s not giving in. It’s really just validating. You know, I’m not going to say: she wants the
stuffed animal from driving through. Honestly I say no 80% of the time and she’s has been all
the times when she gets to the explosion point,
the time before she gets on the floor that it’s the swelling and I say, you know, I don’t say: “you’re not getting it” or I say: “let’s get it instead of”. The solution is not getting the stuffed animal, it’s: “hey, I know you really want that stuffed animal, it’s pretty”, let’s acknowledge that this stuff looks pretty sweet. I’m like, let’s take a picture of it with my phone and see if we can buy it later. You know, let’s acknowledge it. I see you’re upset. Just kind of just do what we can to deescalate but not giving in. And then the explosion point is that if I ultimately fail because other things like saying we’re not getting it, the answer is no because I said so that just escalates it. So that reduces the amount of time she’s in swell and she’s just going to go straight to the explosion point. Then you have a kid on the floor screaming, crying, people staring at you. Most people just don’t care like oh yeah, we’ve been there before. But even so explosion point sucks for everybody involved. Even she has quite a collapse part because I know that collapse feels a lot like shame because that’s the moment where you’re this consciousness come back to being in control. You’re like, “Wow, I am a monster. I am worthless. I suck. I don’t deserve to live. I don’t deserve to do any of this stuff. I must be scary. Nobody should ever see this side of me. I should just hide in the hole.”

I know that’s what she’s going to feel even at four years old. Even though she doesn’t have words for it, I know that she wants to disappear. And one of the things that I’ve made sure to do is I can tell when my cat or dog barks and meows on their head, you know the difference between their meowing for love and meowing for food. I can tell the difference between her screaming for pain, screaming for anger, screaming for excitement, screaming just to scream, and screaming out of sadness. She screams. And so I’ve become an expert in my own child’s screams, knowing when she goes from angry, “I’m going to murder you” scream to I’m actually kind of sad scream, they become a little bit more sluggish,
a little less destructive. Like at this point, she’s no longer throwing chairs on the ground. She’s just kind of like kicking things.
she’s no longer trying to attack me.
She’s kind of given up and is sitting.
she’s no longer slamming. She’s just kind of laying flat. These are just behaviors where she’s now lost the energy to be this destructive and she’s now this internal, going inside, the collapsing inside herself. And I know at that moment it’s like I need to make sure she feels loved in this stage and because I know she’s thinking she’s a monster. I can’t let her think that I’m going to abandon her. You know, I need her to know that I’m not afraid of her and that I’m not afraid that she’s going to scare me away. So in this especially in situations where she is attacking me. You don’t deserve to be attacked.

You know, it’s our body. You don’t deserve that, you’re not there punching bag. So, it’s okay to separate yourselves and at some points,
when we were out to eat and I put her in her car seat to just thrash out while I sat in the front seat crying. I was still there.

She could still see me, but she was safe and I was safe. There’s been times where she’s been in her bedroom with the baby gate and she’s
done her thing in there. I was on the other side of the baby gate. I was still visible. I was still there, but she couldn’t get to me.

It’s okay to protect yourselves but still be present because it’s important that they know that they have someone who’s never going to abandon them in that moment, that they are worth, you know, that someone can see them at their worst and still want them and still love them. And then again, the resolution that has to be intentional. A lot of the times during this collapse thing,

when you go back to reptile brain in here, she can’t communicate. Well, normally she’s super fluid at talking. Amazing little speaker will talk your ear off. Highly articulated, but when she’s collapsing, she’s just wants nothing to say. She’ll she says things that she doesn’t mean and I hate it. But she’ll say all sorts of things like the mental assassin where they try to like attack you through the mind and “I hate you”. “I wish your dog died again”. Just dumb things like that. And I know I don’t take it personally anymore. Something still hurts, but I don’t think it personally because I know that she’s not the one in control of it. That’s, you know, this other character. I’ve been there. I know. But when she gets to this stage and I know she’s like, “Well, I remember I said that. I hurt mom.” That sucks. But even that, she can’t really articulate anything there. So, I don’t start with words. I don’t immediately jump because if you jump to resolutions so soon, you’re going to go right back to that explosion point. You’re going to go right back to your stuff. I’m like, “Okay, now you want to say sorry to the person you bit in class.” And she’s like, “No.” So, we’re not going to go back to that. It’s not ready for that yet. And this time I get to get down on the floors and I’m like a little puppy with I don’t know sock in my mouth trying to play with her and she’s just over on the ground, laying, “what are you doing?” in my mind. She’s like, you know,
this sudden shift in mood. She’s like I suck but you want to play with me right now. What the heck? I don’t talk until she talks. That’s my general rule. So if she is wanting to or she starts saying something then I can act and respond but I don’t ask her questions, I don’t use mouth words, I just act out. That seems to work for us, at least as a little kid for that age. I will have this talk
again in about 10 years when she’s a teenager.

And yeah, for the resolution: it looks different for every situation. We’ve had resolutions other times, I have not been above throwing Kit Kats on the floor, like the little things thrown out to me and it’s even funnier when I’m knocking to you. I just throw

another one. So it’s whatever we can do to change the mood. Once we’re regulated again

then maybe – didn’t have to be in an hour, that could be a week from now. Honestly I know that these things are on her mind because she’s so comfortable talking with me that she will come to me days later and be like: “I’m sorry I made us late for school”. It’ll be out of the blue and then we can have resolution again, or maybe
didn’t feel like it was resolved the first time. So, she felt she had to do it again. Either way, I let her leave that. It’s her experience and I’m glad that she feels comfortable enough to tell me that and I and I know it’s still in her.

So, this is a strategy that I like for
classifying and managing demands within a family. And so the first bucket are your non-negotiable items. So generally those are going to be things that revolve around safety, around health. Those are things that maybe involve really strong family values that you have. So things that are super important that even if we’re coming up against some resistance, we prioritize finding a way through Next is the negotiable bucket. So these are things that we can be more flexible about. These are things that we can involve the child in. We can have more collaboration. It’s not so much of like an emergency situation like “don’t touch the stove”. It could be something more like okay cleaning your room and maybe we talk with the kid about “where do you want to start?” Where do you want to start with today? If you had to pick one thing in your room to clean, what would it be? And then the chucket bucket. So you’re going to have days where something is just not the hill you want to die on. So maybe the goal is you want to clean the room, but maybe it’s, you know, going back to the spoon theory and ticket theory. It’s a low spoon low ticket for your kid. Cleaning the room is maybe just not the biggest priority. And maybe it’s something you say, “Hey, today we can let this go. This doesn’t have to be a thing.” And that can be hard because I think for a lot of parents too sometimes that can involve a level of shame and guilt with putting some of those things in that bucket and saying, “Well, we’re going to let this one go.” And so that can be really a moment to just check in with yourself about any of your feelings about things that you’re putting in that bucket and how that affects you.

So we basically wrote a novel. We wrote all of our tools and strategies in a document. It’s 10 pages long.

So just putting that out there. But yeah, it has basically a bunch of different things of just the brief overview stages of PDA. Just in case you happen to process document and don’t know what it’s for. But we broke it up into different triggers and essentially tools and strategies that you can use as a parent, that you can use for yourself if you’re experiencing one, that your child can do if you want to help teach your child, you know, these coping mechanisms and tools that they can then try and remember in the moment. They’re not going to remember it unless it’s second nature. So practice, role play, be able to use them. Yeah. And just to say a little
bit more about this here. So with these strategies,

whenever an episode starts, it doesn’t always have to see itself the whole way through.
You don’t always have to start a trigger and get to explosion, get to collapse, have to do resolution. So the hope is that with time and with practice, you can use some of these strategies to kind of stop things at the stage you’re in. And especially with some of the child tools, these are things that won’t immediately be effective, but definitely with like time and practice and intervention and reinforcement can be really useful in teaching your kids some skills to not only recognize their feelings, their internal experience where they’re at, but to also