Pathological Demand Avoidance 101 | Undivided Conversations

Video Transcript

As people hear about PDA, especially hearing about demand avoidance, some people are jumping to the conclusion of where they see demand avoidance, there lies PDA, and that's not actually true. PDA is much bigger and more complex than just demand avoidance, but the history of PDA, I think, is interesting and helps explain it a bit, and that was in the ‘80s in the UK, a predominant psychologist who was diagnosing children as autistic, noticed there was a subgroup of autistic kids that were different than the majority of autistic kids, but very much like each other, and what really stood out to her as the dominant characteristic at that time was avoidance of everyday demands. She chose the name Pathological Demand Avoidance because she wanted people to know that these kids weren't doing it on purpose. They just couldn't help avoiding demands. So she thought she was doing everyone a favor by calling it pathological, and there are people around the world who appreciate that name for the same reason: that people know they can't help it. Most PDA individuals prefer other names and the predominant one is Pervasive Drive for Autonomy, and that’s better not just because it takes out the word pathological, but the drive for autonomy is really more important than demand avoidance, and demand avoidance is generally a manifestation of this drive for autonomy, so it's more accurate. It is tricky. I have a couple little go-to ideas, and again, this is all a substitute for the fact that there isn't really good criteria based assessment right now for PDA, but one thing is that we're all sort of familiar with the idea that toddlerhood, up to four, it's hard, right? There's a lot of, “No,” there's a lot of protest, there's a lot of developmentally asserting one's will. But I say, if it never got easier... Kid’s five, six, seven, and you're like, “I feel like I'm stuck in time. I feel like I'm back in two and three.” Obviously in other ways, your child will have surpassed those developmental markers. They can... they have all kinds of other skills and capacities that they didn't when they were very young, but that particular feature of being able to collaborate, to engage in a task, to carry out an activity, when that is still so hard, that's one little clue, right? Another clue is, like I said, when a child is unable to access and do something they actually want to do and they might say, “I can't. I don't know. I can't. No,” or they might even kind of seem to pivot and say, “Well, I don't want to anymore,” right? It's just a way to explain what seems inexplicable. How could you not want to do this thing? How come you can't do this thing you really wanted to do? “Well, I don't want to anymore.” Okay. And so those are two features. I'm going to borrow a third from Amanda Diekman, who is a parent coach, and parent, and PDA herself, and she talks about when parenting feels like it's stuck on the extra hard mode, right? If you think about a video game, you've got the beginner mode. It's kind of easy. You're cruising along. You got the super duper extra hard mode where you can't even make it past the first checkpoint in level one, right? And it's sort of parenting that feels like it's stuck on that legendary mode, right? The extra hard mode. And I think that that resonates as well, and so I think those are some of the features that I really talk about, again, and this is just a substitute since there is not adequate, thorough assessment right now. The first question, I think, for parents to ask is do they need a diagnosis, and even if it's for peace of mind, I mean, that's a good reason, but it needs to kind of be worth the stress, the expense, putting your child through that, and it may change things or it may not, because since PDA’s so new, especially kids who already have an autism diagnosis, the PDA one on top of it doesn't really help that much because the diagnosis is autism with a PDA profile. I think the whole key, if you figure out you want one, is to go to a neuropsychologist who is PDA informed, who is going to look below the surface because as PDA kids are very savvy and understand social expectations, many camouflage and mask through the whole assessment, and then the end of this, you've gone through this, you've paid all this, and the examiner is like, “Yeah, I don't... we don't... We don't kind of see anything. Looks fine to me.” So it needs to be someone who understands that what you see on the outside might be very different than the inside, and who's really going to talk to parents and kind of... or other people that know the child, who’s not just going to go on the testing situation or checklists or scales, and someone who might be willing to break down the testing to multiple periods, not one shot, but really kind of get to know the child, maybe play with the child, have more informal interactions. They can't just rely on the ADAS or the MIGDAS, M-I-G-D-A-S, is one that most psychologists use who are kind of PDA informed, but an assessment tool alone isn't going to tell the story, and then the recommendations at the end of an assessment have to be PDA recommendations, because sometimes people are kind of halfway there. They'll diagnose autism with a PDA profile, and then they'll just kind of go on to traditional autism recommendations, which don't work for PDA’rs. Predictable routine, lots of structure, rewards/consequences. All those kind of things are not helpful for PDA’rs. So I feel like it's much better not to get an assessment than if you... than get one with someone who doesn't understand PDA. It's a behavioral manifestation of kind of what is probably an autonomic nervous system or stress response, right? And it can have different... It's not specific to one different neurotype, one specific neurotype. This is kind of a common thing. There are differences often in the amygdala and in the threat response system, the nervous system, where there's hypersensitivity and so you can see a big reaction, a big fight/flight reaction, due to that. The reason why a nervous system lens is important to consider and kind of the reason why I kind of... I choose to look at PDA through it is because it takes the onus of responsibility off of the child. This is... and this is... this is controversial, right? This is... there is a piece where children are... we do have to hold kids accountable for some of their behaviors. We... that's consistency and boundaries, and all of these pieces are really important. However, it's really important to understand on a fundamental level when you're seeing a child have a really big response to what seems like a very, very small problem, there's something bigger happening and happening with their brain, and you're seeing stress more. What you're seeing is the result of stress hormones, adrenaline, right? You have the cortisol, these things that are flowing through their body, and they're doing anything to escape from that demand. It's kind of a very ancient part of your brain. It's not... It's involuntary, and this is... I think it's important to have that lens because it provides compassion for the child, and it also... it takes some responsibility. I want parents to be compassionate to themselves as well, right? I think so often, parents are blamed. We live in a society where parents are blamed for everything, right? And some of this is... it's not parenting. It's coming... It's a struggle that's coming from... just sometimes it's just make up, right? Not really behavioral strategies because it's... or techniques, because it's the absence of looking at the behavior that matters, and what needs to happen is viewing behavior as a symptom of a problem, not as the problem. Trying to come up with supports that are going to decrease anxiety, add co-regulation, make the child's nervous system feel safe. When that happens, the behaviors change, but when you just deal with the behaviors directly you get kind of this game of whack-a-mole or a short-term change, and sometimes at a long-term cost. So we don't want kind of behavioral strategies. I think for therapeutic, you want an autistic affirming, PDA affirming, trauma informed approach -- not just trauma informed -- that's all relationship based. To me, the goal is just being attuned and collaborative with the person and partnering in that self-understanding. Some people respond to talk therapy, some do not. Some people respond to neurofeedback or the safe and sound protocol instead of talk therapy, some people respond to art therapy or equine therapy. It's trial and error, and it's all based on, I think, the match between a provider and the individual. It has to be a match, and so it's not the type of therapy, it's the match between the people. As a parent moving into a lower demand lifestyle, it was very challenging for me because I grew up in a household with a lot of demands, and so as an adult, some of those things felt non-negotiable to me. Making your bed feels non-negotiable to me because of how I was brought up, so I had to almost renegotiate with myself what was an essential ask for my son, and that was a very challenging process because it meant questioning everything. I had to say to myself, “Why am I asking him to do this right now? Is it going to teach him something? Is it going to help him grow? Or am I doing it because that's the way I was raised and that was the expectation on me, and so I'm simply passing that expectation on to him?” And, so really looking at things and kind of doing an inventory on whether or not it is something essential for them to do and in their best interest, or really it's just something that I would like done by a certain time or I would like done in a certain way. And that's hard for parents because a lot of us were raised, at least in this generation of people that I'm parenting with, a lot of us were raised to be there, not be talking, just doing what we're told, and you cannot, in my experience, raise a child with PDA the same way that you were raised, if that's how you were raised. It's basically just, in my opinion, a really lovely, humanistic way to raise your child anyway, because you're not telling them what they have to do and kind of disregarding whether or not it feels comfortable for them to do it. I always want my son to feel safe and feel heard, and I think in any space we create, like as a peer support specialist, creating a safe place, I know that I have to do that first for the people in the group or they can't... They can't relate to one another and they can't access what they want to share. So lowering demands really just means creating a safe environment for your children where they feel like they can talk to you when things are hard, they feel like they can explain to you why things are hard, and they can really self-advocate for themselves. And what lowering demands does is it gives you a space to start with your children, so they realize they're not going to get out of doing the thing, but we're going to find a way that is most comfortable for them to do the thing, and sometimes it means the thing doesn't get done the day that you want it to get done, because you have to build up to it. So I think it's a really compassionate way to kind of engage with our children, and so it's definitely not alleviating all of the expectations, but it's lowering the expectations, and I will say as a parent, it is very challenging. When you first move in to trying to lower demands in your household, some of the questions that you might ask yourself, you might say, “Oh wow, am I just giving up? Am I just saying, ‘Oh, it doesn't matter. I'm just going to let them do whatever they want’?” and that's absolutely not it. In fact, when you lower demand, you have to be paying even more attention. So it's not just like, “Do whatever you want, I don't care.” It's really engaging with them to try to figure out what's making it challenging and how you might be able to negotiate to actually have them fulfill what needs to get done, because one of the biggest things that parents worry about that have children that are demand avoidant is what's it going to be like for my child when they get older. They have to have a job, they're going to be in relationships, and you simply can't avoid every demand all of the time. And what I've seen, and we've been kind of working on a lower demand lifestyle for the past two years, and what I've seen is tremendous growth in my kiddo and the other kiddos whose parents I've spoken with that do a lower demand kind of household, because the children gain more confidence in themselves and they gain more confidence in their ability to self-advocate, and to negotiate, to have more of a sense that, “Hey, maybe I can do this thing, but I need to approach it a little bit differently.” I really want to empower parents to trust their gut and their intuition about what is going on, and I say that because often parents in this journey have been told they need to be more consistent. They need to have more boundaries. They need more rules. They need to have more consequences, more rewards, more structure around expectations and demands. And they've often gone down that road already. And if that worked, great. We're not talking about PDA then. But if that did not work, in fact, if your life got harder and you saw things get worse and you saw most tragically your relationship with your child just absolutely erode to something that is just painful.. Your child might seem to really hate you at this point, right? You might feel incredibly disconnected to your child and feel like I don't even know who they are. I don't even know how we're doing this together, all kinds of really painful feelings. That's an indicator that the approach has not been helpful and that you probably need to pivot to a different approach, so I just think that's really valuable information that parents need to not discount and really need to honor and there's lots of of things in science and examples of where we didn't know something right away, and then later we did and we went, “Oh yep, it was that all along.” And I suspect PDA is something like that, right? That we're kind of in this phase right now where it hasn't been verified, but... at least in this country, but it is something that we are seeing and likely will have much more of an acknowledgment, I hope, in the future.