A focused webinar designed to help parents and carers understand Pathological Demand Avoidance (PDA), a profile within the autism spectrum. It offers practical advice on managing demand avoidance behaviours, reducing anxiety, and supporting the child's development. This session highlights strategies for creating a supportive environment that encourages positive relationships and autonomy for children with PDA.
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A focused webinar designed to help parents and carers understand Pathological Demand Avoidance (PDA), a profile within the autism spectrum. It offers practical advice on managing demand avoidance behaviours, reducing anxiety, and supporting the child's development. This session highlights strategies for creating a supportive environment that encourages positive relationships and autonomy for children with PDA.
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All right. So hi, everybody. This is the introduction to pathological demand avoidance hosted by autism 360. Just a little bit about me. Hi, my name is Rachel Young. I'm a BCBA. I have a background in I'm a board certified behavior analyst and you probably can hear that I am not from Australia. I'm located in California. So really quick. I'm going to go through just an overview of what we're going to be covering today. Right now, we're going to get the definition of what pathological demand avoidance is, or I'm just going to call it PDA for the remainder of the presentation because it's a very long phrase. We're going to give an understanding of how PDA fits in with the autism spectrum as a whole. I want to give you guys some some bit of an understanding of the neurological aspects of PDA because I feel like it's really important for everybody to understand where where kids are coming from or where adults are coming from in their own brains. Some examples of how it fits in with specific cases, some strategies of what has been shown to work best, and then at the very end we're going to get to the Q& A session. The first thing that I want to do is I would like to define what pathological demand avoidance is. So the definition and the origin of PDA it comes around from a lady named Elizabeth Newsome and she was British psychologist and she came up with the terminology in the 1980s and PDA, it's a neurodevelopmental condition and it is within the autism spectrum. So it's essentially part of the autism spectrum. And. I consider it to be like a just a different color of autism. So if you have autism, you have this, you can have what's called a profile of autism. So you can be diagnosed with autism and then also show these specific characteristics. And it's observed in children. Where the behaviors are not necessarily explained fully by the typical autism diagnostic criteria and the typical autism diagnostic criteria need to be revised if you ask me, but that's the first story. But. There's patterns that we see that are not necessarily 100% what you would normally see within a typical diagnostic criteria and they're characterized by extreme patterns of avoidance of Normal everyday demands, like following instructions, initiating tasks, adhering to routines, and sometimes these tasks and everyday demands can be ones that they place on themselves, it could be getting up, getting out of bed, something that they tell themselves to do, but then. They have a extreme avoidance to it. And this is identified as a condition that is distinct from autism. So it's like a slight sidestep to autism. Like I said, I consider it to be like a different color of autism. And it's characterized by this extreme need for their own control over their lives. Control and autonomy. It's going to be a big keyword here. And the reason that this happens is the avoidance is seen as a coping mechanism for very high amounts of anxiety and overwhelm, overwhelming feelings due to this anxiety. It is not because they lack the understanding or the ability to perform the tasks that they are asked to do, but they have this immense anxiety that is associated with whatever they're being asked to do. And so PDA has been put forth as this helpful framework for understanding. Understanding and supporting individuals with these characteristics. So they, we want to put down, put forth this framework as saying hey, here is what we've noticed, this pattern of characteristics, and here is out how we have best figured out how to support these kiddos. It is slowly gaining recognition within the autistic or the autism community. And I think it has. Gained a lot more traction in England and across. The pond over here in the United States, we have a lot of people who understand that it's present, but it is not currently recognized as a separate diagnosis in the DSM 5. We are getting more knowledge base on it over here. And so there's a lot more literature being published and studies being done. So that's really good. And there's a lot more research currently going on about it and that's also good. So hopefully we'll have a little bit of. Change coming down the pipeline. So that way it will be become it will become a formal diagnosis. So on to the key characteristics. So the key characteristics that we tend to see in individuals who have been diagnosed with PDA. There's an extreme avoidance of demand due to how High anxiety levels. And when you are talking about an individual who is on the spectrum or even somebody who is just, neuro neurodiverse in general, typically what you will see is you will see an individual whose nervous system is heightened due to their diagnosis. So that comes with the heightened fight or flight response. An individual who has been diagnosed with PDA that is. Cranked up even higher. So their everyday lives might look like fight or flight all the time, but you from the outside perspective might not see this. This is not something that you would be able to potentially notice on the outside. You would notice it because of their behavioral traits. Now what you would see in a person with PDA is that they have very high social communication skills which they have adapted because they figured out that this is a really good way to get out of having to do some of the things that cause them anxiety. So they're using these social skills as a coping mechanism to get out of having to do some of the things that are Prompting a lot of these anxiety things they can also they can often use, deflection techniques to get out of conversations, they can change topics, they can evade, they can avoid, and they can do all the different as Thank you. Thanks. Horrible word isn't manipulation techniques to avoid the stress and the anxiety that a lot of these situations bring. They might manipulate situations or others into getting the demands that they don't want to do done for them, right? They might use guilt tripping or emotional manipulation, but they're doing all of these things not out of negativity or spite, they're doing it because they need to, they don't want to have the anxiety of the demand placed upon them, they're trying to get out of it. And one thing that needs to be stressed is these behaviors are not intentional acts of difficulty, but they are coping mechanisms for that increased anxiety that they're feeling. They're trying whatever they can do to get out of that because of the really increased anxiety levels that they feel. So understanding that these individuals have these internal struggles is a very key thing and it's a big change in scope for really working well with your loved one. One of the big things that I try and teach is that patience, empathy, and understanding are key in helping somebody with one of these profiles to overcome the anxiety. You have to meet them, you have to meet some of their meltdowns with intense acts of love. And that support is crucial for managing and avoiding these behaviors. A lot of the times I get asked, how is PDA different from other other profiles of autism? So like I said, it's characterized by these extreme demand avoidance behaviors. And even though you'll see demand avoidance behaviors in other profiles of autism, it really is the prominent behavioral Profile, a prominent behavioral activity that you'll see in PDA. So their entire day is revolving around trying to wiggle their way out of doing anything. And they're very good at it. And like I said, it's high anxiety, but it can lead to the avoidance of any demand that you place, even if it is the demand that they might want to do. For example. You might say, let's go get ice cream, and they're really excited about getting ice cream, but the demand to put on their shoes is too much for them to go get ice cream. That one demand, even though it's leading to something very good, is too much. You'll see a lot of emotional outbursts. And the emotional outbursts often come when control Is lost or sometimes even when they're challenged, so you'll see something along the lines of when something is phrased in a way that doesn't make sense. Okay. it makes it sound as if they don't have a choice in the situation. So for example, I need you to put your shoes on instead of can you put your shoes on. Those are two very different things when you're talking about pathological demand avoidant children. So one is I need you to doesn't give them any control in the situation. Whereas can you put your shoes on gives them control. It gives them the option to say no. Because of this, traditional interventions that have been used for autism therapy are likely to be less effective. You have to have a really flexible and adaptive approach when you're working with children. Who have this profile you get a lot of children who really don't care about the reinforcement component of traditional autism therapy interventions. They really don't care what they're working for. They just want their own choice. And you'll have a lot of children who don't work well with the typical, first then components of autism therapy. You'll also see that they're very sociable, but they don't necessarily have a lot of in depth or genuine interactions. They're really using it because they want to get to the end goal. Roleplaying, however, is really common. It's a very, it's a very common thing, which is not a common thing that you'll see in a lot of children with the quote unquote, typical profile of autism, you'll have a lot of children who with the PDA profile, they like to play. They like to pretend. It's a very common trait for them. And this is because it helps them to engage in those social skills, which helped them to their effective coping mechanisms for them. So if we get into the neurological aspects of what's actually going on inside their brains They have a more sensitive stress response system, and this causes them to be more anxious. And that takes part in the amygdala. The amygdala is part of the brain that handles your fear response. So whenever you get startled, that's what responds. And the amygdala is really overactive in these kiddos. So they really don't have control over how often. Their brains are shooting off these signals of, Oh my gosh, it's time to fly away. It's time to, it's time to fight or it's time to flight. They don't have control over that because that part of their brain is just really overactive. And whenever there's something that happens that even seems slightly stressful, their brain shoots off a signal of, hey, you need to fight or you need to run away. And so that's what's happening inside their brain. Their brains handle social understanding a little bit differently. Part of that brain, their brains are a little bit, just the processing is a little bit different, and so they handle social interactions a little bit differently, and they have a different emotional response to things. So there's some research going on about how social interaction is handled and why it's handled the way it is. They still don't really know, but they know that there's a slight difference. There's definitely a difference in the way that kids with PDA and autism in general because of the stress response system. There's differences in how they handle executive function. Executive function is how you handle things like planning and being flexible. And that part of the brain they have a little bit of they have a hard time with some of those things. And so it's really difficult for them to do things like switch tasks. And that's a really difficult thing to do. And there's just a difference in how those things work. And it's not like there's anything wrong. It's just different. And so we have to support them in that component of how to. how to switch tasks in a more effective way that doesn't trigger that stress response system. And managing emotions can be really tough. That happens in the part of the brain called the prefrontal cortex, and it deals with the emotions. And so that part of the brain might just be a little bit different. And so we have to really help them manage those emotions and learn how to do that effectively. There's nothing wrong. It's just different. And so we have to really help them and support them in those ways. Sensory, a lot of kids on the autism spectrum have a lot of issues with sensory, but it can be very difficult for them to regulate a lot of those sensory input and then also not get super anxious about it. That can be very difficult because that can really increase the amount of anxiety that they feel. And just all of the way the different parts of the brain communicate with each other. It can be really hard to have all of these different things happening at the same time and not have an anxiety attack every part of the day. So these are things that it's really important to remember that. Kids with a PDA profile, kids with autism in general, things just work a little bit differently. And so when you're working with these kiddos, remember to come at the issues that you're seeing with an empathetic viewpoint. We have some case studies. So there's one kiddo named James. He was a toddler known for his inquisitive nature. And. He struggled with high levels of anxiety and sensory needs. And he was facing significant challenges in attending to mainstream school. And so his parents shifted him to homeschool education. And then we have Stan. Stan had an older brother who was already diagnosed. But he displayed, Stan displayed different behaviors than his brother. And so he displayed PDA. And that meant his parents had to change the way that they interacted with Stan and they adopted highly nuanced strategies and managed they managed his needs differently than his brothers, which was a really great way for the parents to learn. Francisco was noted for his constant meltdowns and mood swings. Francisco's difficulties became pronounced upon starting primary school and that led his parents to a challenging journey to understand and address his needs. And that they found strategies that resonated with his own PD. And then we have Zara. Initially, she was calm before starting school but her behavior dramatically shifted to aggression and avoidance when she was in school prompting her parents to seek and understand interventions that aligned with her diagnosis of PDA, speech and language disorder, and dyspraxia. Going through all of these different things, you can see, I'm going to read you out some different quotes from the parents on how they saw some of their behaviors in their children. So that way you guys can see how the different parts of the the characteristics and give you the examples from the different case studies. With the unique social processing parts of the brain that help with the social interaction, like I was saying this can explain why children with PDA use these different, unique ways to communicate and they often avoid demands. And for example, James's mother describes him as thinking in corkscrews, indicating that his way of processing social interactions and his demands was highly unique and required creative and nonlinear approaches. This was often an attempt to negate demands. So this is something that you might see, and I have definitely seen in a lot of the kids that I have worked with. They will talk in circles to try and get themselves out of any sort of demand. So they'll say one thing, And then you'll say another thing and then they'll just come back and circle in with another part of the thing. And it's just, it's a circular conversation with them, but they're still just trying to get themselves out of doing the thing. And all of a sudden it's 25 minutes later and you're still having the same conversation with them. And you're like, Hey, you've done a really good job of getting yourself out of taking a bath. So it's one of those things where there's, they're really good at that and they've delayed the demand. And so it's actually, they're very good at that. At having those conversations because they figured out if I just keep talking, I don't have to do it. And so that is that's how they use the social language to meet their own needs of delaying or getting out of their own anxiety. Also, it's a means of connecting with another person to, cope with their anxiety. Mood regulation issues. So I mentioned that serotonin, it's part of the, one of the chemicals in the brain, it affects mood. And sometimes we, we think it might, there might be a different balance of it in children with PDA. And then it might impact how these kiddos regulate their emotions and react to situations. And so I have some examples here. So Francisco's mother reported that he had these large mood swings in response to these. Really tiny issues. Like I was mentioning, you ask a kiddo, Hey, can you grab the door for me? And it's just a huge meltdown. And then James experienced experience of heightened anxiety, especially after traumatic events. He had a really traumatic event of being restrained to school. I know I didn't put all this in here. It was just too much, but That impacted his stress regulation and learning. And so the ongoing stress, there could be a really traumatic event that occurs, and then the ongoing stress from that could last a lot longer than you would expect it to last for you or I. So for example, with James, he he had an event that happened at school where he was restrained. And for him, It lasted months, almost a year. The stress of that, he was in like a heightened fight or flight state for almost a year after this. And I recognize there was just too much of this information to put in the webinar. It's a good example of how that can affect the kiddos. I know that we've probably all seen Maybe in some of our kids that they're not necessarily motivated for things that you might think that they're motivated for. Their favorite thing in the world might be Oreos and you're like, Hey, you want to go pick up some toys and you get some Oreos and they're like, yeah, that's cool. So there might be a difference in the way that the reward system in the brain is structured. And so we're doing some research on that right now. And so that might be something that we have to work with. In the case of Zara, her parents learned that traditional parenting and conventional behavior management techniques that you would find they weren't successful with her. And also disciplinary actions didn't have any sort of consequence. She didn't really, those didn't matter for her. So they had to really employ very creative and indirect methods to motivate her and manage her behavior. So the anxiety, how does this really play out in their behavior? Like I was saying, the overactive amygdala can make the anxiety response really strong and last quite a long time. So it can have that really lasting impact. Something can happen days ago and they can have a fight or flight response that occurs for a very long time. It can impact how it, how they make decisions and how they control their behavior, so they might not be in control of their behavior and they might not be able to make decisions for a very long time, or at least concrete decisions, and there's a constant release of stress hormones cortisol, which is one of those things that, if you have a really bad day at work, you have a really high level of it. And it can really influence how they remember things. They're not really able to keep those memories for a very long time. And that's not good for your body. So it's really heightened level of that. It's almost as if you're working, they're working 60 hours a week at their age. So that's really not good for their stress. They might be using certain tactics like avoiding certain situations or trying to get out of certain situations to control their stress, which is what they're doing. They're using all of these negating techniques just to get out of doing these little tiny behaviors because their stress is so high. They're using their social skills in a unique way. And this creates that cycle where avoiding these things makes them feel less anxious for a tiny little while, but it also strength strengthens that habit of this avoidance. And so they're learning to be to do these behaviors. They're learning them very well, but it also leads to more anxiety over time, because then they still have those behaviors that they still need to do. So the strategies that have been proven. helpful that work really well. There's flexible and collaborative approaches. So one of the research emphasizes that flexibility and collaborative approaches work best. And what that means is asking them what's going to work best. Hey when do you want to do this task? So we have to be really flexible in figuring out. What's going to work best for them and what's going to work best for them that day. We can't always have routines. Sometimes we have to let things go out the window. We can't. We have to accept that maybe today is not the day that this task is going to happen. And that has to be okay. We have to make sure that we communicate with other caregivers. We communicate with the school and we let them know that this is an issue for us. And, some days. Little Johnny's gonna come to school and he's gonna have his pajama shirt on and he's gonna have regular bottoms on and that's gonna have to be okay. Or he's gonna have two different colored socks on or two different colored shoes on and that's gonna have to be okay because we couldn't get the two on the right beat today. We're not gonna ask him to change it because it's not important. Some days that's how it's gonna have to be. So we're gonna have to make sure that We have to work on anxiety reduction and what that means is creating a safe and calm space for kiddos to express their feelings and to express their anxiety. We have to make sure that we react to their meltdowns. In a very calm and empathetic way. So whenever I've been working with children who have PDA profiles or who have high anxiety profiles, my response to them getting heightened is to become lowered. I make sure I bring my voice down and this is hard. I know it is. I'm a mom, but I make sure I become lowered and I see their outburst as Basically, a cry for help. It is anxiety. It is their brains having an anxiety attack. It might be It might be an anxious or an angry behavior, but it is definitely an anxiety attack, on the outside it's angry, but on the inside it's sad or scared. So try and reframe and reshape your thinking to think of it as that. Tailored education strategies, it's definitely important to collaborate with the school and let them know hey, this is what it needs to be. Maybe at the beginning of the week, we can produce, a packet of work and they can choose what they want to do. Each day, as long as it gets done by the end of the week, that's all that matters. Sometimes that's really effective. So you have to be able to collaborate with the kiddo and give them autonomy and choice on how they want to best proceed. The other thing is giving the kiddo the reasons why. It's really important to let them know hey, it's really important because This is important because a lot of kiddos just need to know the why. Letting them know why things are important is a huge step to helping them reduce the anxiety. And answering their questions. Positive relationship building. Building trust and making sure that if you make a promise to them, you follow through. Sometimes if they make a promise to you, They might not follow through, but it is really important that if you make a promise to them that you follow through because you want to make sure that you are somebody that they can trust. They have high anxiety. You want to make sure that you don't do anything to break that trust. And then the last thing is a use of indirect and playful techniques. As I was saying, and I have a resource that I'm going to be sharing with you guys, but indirect Commentary or indirect methods of saying things is a lot better than direct methods of saying things. And this is something that I've heard from adults with PDA. They say, I wish people would talk to me and say, instead of, hey, I need you to do X, Y, and Z, I wish they would come to me and ask, is there any way you could do X, Y, and Z? Or do you have time to do X, Y, and Z? Even though the answer is going to be, yes. I want them to ask me instead of tell me, and this is counterintuitive if you've ever worked as a BCDA, but if you've ever worked with any sort of autism therapies they always say tell them instead of ask them. With kiddos with a PDA profile, you want to ask them, you want to give them the choice of control and autonomy, you want to make sure that they have that option to say no, and then you want to make sure that you wait. Because normally, okay, they might say no, yeah, but you also want to make it playful and say okay that's fine, I'm gonna do it, and make it look fun. Because if you make it look fun, then they might want to join. And if they might want to join, then you'd be like, Hey, thanks for joining me. This is cool. I like it. These are techniques that one can use in order to promote that social engagement and promote them coming and helping you or joining. And then another one that I've always learned is pick your battles. You don't always want to get into sometimes just don't get into that argument. This is one of the resources. So this was shared by a parent of a KS1. child. So they said, really, it's just how somebody asks him to do something. And he see it, he sees it as a, we need to go and do our reading now. He'll refuse to it. But if it's like, Oh, Hey, it's time to go do something. Do you want to, do you want to come? Or do you want to choose a book from these two offering choices? Really huge. Then he'll, he'll want to do it. This one gives some really good handy sentence starters. Here are some handy sentence starters. I wonder if we can, or let's see, or I can't see how to make this work. So basically saying oh no, I can't figure it out. Do you think you can help me? Making it a game. Let's see if we can beat the clock, or maybe we should investigate me getting into a game. Or giving them the choice who do you want to help us today? But really making sure that we avoid things like saying things like, it's time for you to do this. You've got to do this. You need to do this. You must do this. Things like that are definitely going to produce an immediate shutdown in their nervous system because of the heightened anxiety. And then there's another thing that is really important that I wanted to touch on here Take up time. Take up time is that time for the kiddo to be given a task, and then let it marinate in their brain, like I was saying. You might go let's see if we can make something work. And they might go, nah, give it a minute. Engage in the task, do something else and watch that thought grow in their head. And then they might come to you and be like, all right, I'm going to go do it now. But it has to be in their own schedule on their own time. Let them have that choice and autonomy. Put the seed, plant the seed, and then walk away. So it's another tip that I wanted to share, which wasn't included in the actual webinar PDF or PowerPoint. But Plant that seed, and then walk away. Plant it in a non threatening way, and then see if it grows. If it doesn't grow, that's fine. You have to be flexible. But, try. Don't get into an argument. It's okay. Just let it go. So that's a really big thing. Yes, and then the child's interests. Make sure that whatever you're trying to do, try and align it with the child's interests. So if there's something fun see if you can work something in with their own personal interests. So if you have to put, if you have to do something that is definitely non preferred, try and align a fun thing. So if you know that they really like, I don't know. or whatever. Maybe put the soundtrack on for some music or make it if they have to do a math sheet, print out one from Bluey or put some, put some doodles on there that actually look like the characters. Or if their favorite color is pink, print it on a pink pink piece of paper or give them a pink pencil. So make sure that you're doing something that is at least, slightly aligned with what they like, their favorite things. They might be more inclined to engage if they have that. Let's go to the the Q and A section. So is PDA a spectrum? PDA is on the autism spectrum. Like I was saying, it's, I consider it to be like a color of autism. So you said you feel like your kiddo has some of the autism or some of the tendencies, but not others. So it's probably, I can't make a formal diagnosis, but. It could potentially be a spectrum. It could be part of that. They might have some PDA tendencies, but not others. And just like all parts of autism autism itself is a spectrum. You can have some PDA tendencies and potentially not others. That's a good question. You can be slightly on the PDA profile. Maybe not others. You can be highly PDA or, have some of these others. It's all about anxiety. How much anxiety is the is your kiddo facing? But these techniques they can work for probably a lot of for a lot of kiddos in general because everybody has a lot of anxiety. So it's really useful to to use a lot of the techniques and you can probably try some of them and see if they work. I've heard from a PDR would you is ideal language. Let's see. I've heard from a PDR that would you is ideal language to use once priority of the demand has been stated. Can you? They may say I can, but I don't want to. That's fair. The would you is probably good potentially from an adult. As well, that's a very fair statement. So there's a question about neurological biomarkers. I don't know if there's any neurological biomarkers. There's still being, there's still studies on that. What books and articles would you recommend if I want to learn parenting strategies and tools to teach to build skill and coping mechanisms? So what you could, Jessica, we have the app as well. We have the app, which has a lot of skills and coping mechanisms that are available to teach a lot of these things. There is more information on the app, and we have a lot of videos that are available for this, so you have a lot of access to live videos, on demand videos if you wanted to get access to them. So if you want to have access to any of those videos, we have them. Let's see. Oh, this is a good question. How do you teach cause and effect if consequences don't work? There is the option. A lot of the time what I will use is natural consequences. So natural consequences obviously need to be monitored. You want to make sure that you give a kiddo a choice, and then you want to explain the why behind the choice. For example, oftentimes I will say hey, Do you want to go get ice cream? And yes. Okay. You have to put your shoes on. Okay. I don't want to put my shoes on. Okay. You can not put your shoes on, but if you don't put your shoes on, your feet are going to get, you're going to walk on rocks when we walk outside, that will hurt. You don't have to put your shoes on, but your feet are going to hurt. And so there's that natural consequences of you're walking on gravel in the driveway. To go to go to the car, for example. And so if they say, okay I'm not going to put my shoes on. I say, okay, have fun walking on rocks. I'm not picking you up. Seems mean, but I've explained why. And it's, 10 steps to the car, but okay, we got in the car and then we get in the car and he's now what'd you learn? Stuff like that. Now, of course, these things need to be monitored. You don't want to let them run into the street and get hit by a car. But the natural consequences, you want to explain the why you want to explain what's going to happen and you want to explain this is what's, this is the why, and the what, and the how, and the who, you want to explain everything and then you want to explain the other, the two options that they have, and so that's how you teach cause and effect, and then if they choose the cause, the one that you're like, okay I don't think that's the best option, okay walk them through it, let them feel it, let them see what happens you don't want to put your jacket on, you're going to be cold, kind of stuff like that. Here's a good question. Through therapy, is it possible for kids with PDA to actually identify the root causes or incidences of their prolonged heightened anxiety so they can re approach these events to be able to reframe reframe them in their minds and thereby releasing anxiety triggers? Kind of. It's not necessarily that they have a root cause, it's that they have a biological cause so there's a biological reason for a lot of these things but, They can improve their coping mechanisms, so they can identify that they have these coping, they have these problematic coping mechanisms, and then they can learn to come up with better ones. That is something that can be done, but that takes a long time, and that's not going to happen at 5 or 15. That might happen. Maybe later on in life once they've figured out what it is. So maybe 15, you can start. Yeah. So thank you so much for coming to our webinar. I hope it was informative. I really appreciate it. Thank you everybody.