Meet Dr. Casey Ehrlich, a mother and researcher delving into the little-known condition called Pathological Demand Avoidance (PDA). As she explains the complex nervous system response that triggers PDA, we're left wondering how many more people are suffering from this condition without proper recognition or support.
In this episode, you will be able to:
· Identify the distinct characteristics of PDA and ODD diagnoses.
· Grasp the importance of building secure, trust-filled environments for children with PDA.
· Understand the use of declarative language for improved PDA communication.
· Learn about Dr. Ehrlich's approaches for families raising PDA children.
About this week's guest:
Dr. Casey Ehrlich is a compassionate coach for parents raising children with Pathological Demand Avoidance (PDA). With a doctorate from the University of Wisconsin Madison, her background in social science and methodology brings a unique perspective to her work. Dr. Ehrlich has gained invaluable insights through her research on conflict, peace, and nonviolence in areas impacted by civil war in Colombia. As a co-founder of the PDA Parents Community and Podcast, she uses her expertise to help parents navigate the challenges of raising children with hypersensitive nervous systems, fight, flight, and freeze behaviors, and trauma. You can find more information about her programs at www.atpeaceparents.com
Resources mentioned in this episode:
PDA Society https://www.pdasociety.org.uk/
Tilt Parenting Podcast: https://tiltparenting.com/podcast-about-children-with-learning-disabilities/
Steve Silberman: https://www.stevesilberman.com/books/
Rachel Dorsey: https://dorseyslp.com/
Tiffany Hammond aka Fidgets and Fries https://www.instagram.com/fidgets.and.fries/
Dr. Mona Delahooke: https://monadelahooke.com/books/
0:00:01 - Jessica Kidwell
I'm Jessica Kidwell, and this is Neurodiversity, a space to expand our understanding and knowledge about neurodiversity and to elevate neurodivergent voices and experiences. Today I am beginning my learning about pathological demand. Avoidant nature or PDA for short. This is not yet recognized in the US. As a diagnostic category, but it is in other countries, and I know that neurodivergent behaviors do not abide by geographical lines or oceans. So when will it be recognized in the US. And what exactly is it? And luckily, I am joined today by someone who can help me, and hopefully you understand these questions and so much more. So, fellow curious minds, let's get started. Dr. Casey Ehrlich is a coach to parents raising PDA autistic children and is the co founder of the PDA Parents Community and Podcast. Her background is in social science and methodology, and she holds a doctorate degree from University of Wisconsin Madison. Casey has conducted original research on conflict, peace, and nonviolence in areas impacted by civil war in Colombia, and she brings those insights to her work with families raising children with hypersensitive nervous systems fight, flight and freeze behaviors and trauma. Her coaching practice is at Peaceparents, LLC. Dr. Ehrlich, thank you so much for joining me at Neuroversity today.
00:01:34 - Dr. Casey Ehrlich
Yeah, thanks for inviting me. And you can just call me Casey.
00:01:38 - Jessica Kidwell
Okay, we'll keep it informal. And as I said to you, before we start recording, I'm going to go ahead and do a blanket apology to everyone listening for the and frogs in my throat as I fight through either allergies or a cold. Living in Washington, DC. It could really be either at any given moment from pretty much March to August, as you may remember living here yourself.
00:02:02 - Dr. Casey Ehrlich
00:02:05 - Jessica Kidwell
So I just want to start off by saying my incoming knowledge base on PDA is incredibly low. There is an intuitive understanding, I think, but I was discussing with a friend the other day, and I was trying to describe to that friend, oh, I'm so excited. I'm going to have someone on to help me understand this a little bit more. And she was like, well, tell me what you know so far. And it was like crickets. I know what the PDA stands for, and I know it has to do with sometimes it gets confused with other behavior conditions, and I think it's very specific to Neurodivergent individuals, but I'm going to say that's pretty much all I know about it. Would you mind giving a very baseline introduction and then maybe as my learning grows, I'll be able to process more to an actual 101 level class?
00:03:12 - Dr. Casey Ehrlich
Yeah, absolutely. Well, I think it makes a lot of sense that a part of you knows or intuits it, because part of what's going on with PDA is really a nervous system response that all of us have. Right. So basically, anytime you or I perceive danger accurately or inaccurately, we're going to have physiological symptoms like racing heart. We're going to have tightness in our chest. Our metabolism will speed up if we're in fight flight. It will slow down if we're in freeze. This is what our body is supposed to do to keep us alive. And it's reflexive and automatic. So you don't even think about it just happens. What's going on for a PDA brain is this mechanism. It's based on neuroception, meaning the way that the brain subconsciously perceives threat. And this happens anytime a child, teen or adult's brain who's PDA perceives a loss of autonomy that they have freedom and choice or a loss of equality to another person or even situation. So imagine if your brain did this, how often you would be experiencing panic. And so what happens is this accumulates and it can impact basic needs and cause nervous system burnout and trauma. And on the other side, it can be super confusing because on the outside we see three different types of expressions, right? Fight behavior, flight behavior, freeze behavior. So one a kid could be defiant, one a kid could be running away, one a kid could be shutting down and going into a turtle shell. And those can all be fight, flight, freeze, nervous system. The behaviors that we see leading up to that full on nervous system response really do overlap quite a bit with what's in the DSM Five for a lot of different conduct disorders. And what this looks like is called equalizing behavior. This is what Christy Forbes, who is a PDA autistic advocate and adult, calls leveling or compensation behavior. But this is what the body is doing to get back to that place of nervous system safety. And it can look very much like controlling surroundings or another person. And that's why it can get misdiagnosed as oppositional defiant disorder, obsessive compulsive disorder, DMDD, even bipolar. So I hope that was as simple as I can make it.
00:06:00 - Jessica Kidwell
I think it's an excellent place to start. I think that understanding that it is almost coming from our is it the amygdala is our primal brain where we don't make a lot of choice about what's coming out of the amygdala. And it sounds like that this is a universal human condition that we all have the flight, fight or freeze response. But for neurodivergent, people whose brains, as we know are wired differently, something processes differently which causes atypical presentation of that fight, flight or freeze.
00:06:48 - Dr. Casey Ehrlich
Yeah, or even I might even say it's a typical presentation of what you would do if you had a gun to your head. But the incidence, how frequently it happens is atypical. And from the outside it's atypical because as a mother, I perceive a very safe and innocuous situation that my son, for example, would perceive as dangerous. And so I love that you mentioned neurodiversity or neurodivergent brains more broadly because this is also a place where we can hone in a little bit more on what makes it PDA and not autism or an autistic individual who also may have a very strong drive or need for autonomy. The way that I define it, and this is a little bit different than the PDA society or others in the field. And this is based on working with hundreds of families and doing some preliminary research that I'm expanding on in the next month. But it's the survival drive for autonomy that consistently overrides other survival instincts. So what does that mean? That means either in the moment, like, I might say to my son, slow down, and he cognitively knows, like, don't run into the street, but his perception of threat will actually cause him to accelerate towards a car because I've said no, right or be careful even, is enough to accelerate that. And that's an instance of, like, in the moment, his survival drive for autonomy is overriding. His survival drive for safety, it can also happen in accumulation where the perception of not having autonomy will override, or like independent toileting or sleep cycles. And from my perspective, that's what makes it a nervous system disability and not at all a conduct disorder.
00:08:58 - Jessica Kidwell
And my assumption based on some of the videos of yours that I've seen and then looking online, the more accepting and understanding of kind of the neurodiversity paradigm and seeing neurological conditions and behaviors and types as being real and not pathological things that need to be fixed. It seems like PDA and Odd oppositional defiant disorder would easily be synonyms from a just cursory look. But what I have seen in your work and some other advocates work is that it is very different. Could you try to delineate what those differences are for me?
00:09:53 - Dr. Casey Ehrlich
Sure. Well, can I speak from a mother's heart first?
00:09:57 - Jessica Kidwell
00:09:58 - Dr. Casey Ehrlich
That's my favorite place to speak. Okay. And then I'll get my academic cap on. But I remember when I did still live in Washington, DC area, and I was on the Metro at the time listening to podcast to try and understand what was going on with my son who was in Burnout at the age of like four and a half. I was still working. This is right before I left my job. I remember listening to the Tilt Parenting podcast and listening to an interview with Mona Della Hook. This must have been almost four years ago, and the episode was about how she doesn't believe in oppositional defiant disorder as an explanatory diagnosis. And there was just something in my mama heart that was like, yes, I knew that that was true. I had never heard of PDA or neurodiversity or anything except dipping my toe in, but I really reflect back on that often. So I personally, both as a mother and as a coach and as an academic, don't love the oppositional defiant disorder category because it's really describing, yes, a lot of these behaviors that could be a bunch of other things, but it's not explanatory. And what I mean by that is, yes, there's some synonymous behavior that we can observe, but there's also a lot missing. So if you wouldn't mind, I can get more specific about that.
00:11:32 - Jessica Kidwell
I don't mind at all. In fact, let's nerd right out.
00:11:36 - Dr. Casey Ehrlich
Okay, let's nerd out.
00:11:37 - Jessica Kidwell
Okay, let's do it.
00:11:38 - Dr. Casey Ehrlich
I printed out the DSM Five because I was like, I want to make sure I'm accurate with everything. So it is in the description is a pattern of negativistic hostile defiant behavior lasting at least six months, which is what makes it different than, like, bipolar, which might be an episodic thing, or DMDD, which is disruptive mood dysregulation disorder. And those are other categories that come into my world from parents. I always go through initial diagnoses when I'm coaching families, and these come in quite a bit. So does oppositional defiant disorder. But here are like, the indicators that medical professionals are using loses temper.
00:12:27 - Jessica Kidwell
Casey, I just want to interrupt. This is what medical professionals use when they are about to diagnose for Odd.
00:12:36 - Dr. Casey Ehrlich
00:12:37 - Jessica Kidwell
00:12:38 - Dr. Casey Ehrlich
Yes, I'm talking about Odd. Often loses temper. Often argues with adults, often actively defies or refuses to comply with adults requests or rules. So, so far we're like very much in the fight. Flight expression of PDA and equalizing often deliberately annoys people. Also looks like equalizing behavior. Often blames others for his or her mistakes. Equalizing it's often touchy or easily annoyed by others. Could be a bunch of things sensory issues, trauma, social communication differences. It's often angry or resentful, often spiteful or vindictive. This is not during a manic episode, and it lasts six months or more. Okay? And another place where there's overlap the severity of Odd is described by how much it's confined. This behavior is confined to only one setting, like at home, at school, at work, with peers. Moderate at least two settings, severe three or more settings, which can overlap a lot with how we understand masking. Because there are five characters, I have a five characteristic framework of PDA, and one of them is that they can appear different in two different settings based on the perception of safety, all related back to the nervous system. So what I want to say here is that it's not that these are not the same indicators. It's that there's a different root cause and a lot missing from Odd. And here's what I want to add to help others understand what else is going on. So first of all, as I said before, PDA impacts basic needs. So every family I've ever worked with had at least one basic need impacted by the nervous system accumulation of nervous system stress. And this makes sense because physiologically, like, lots of stuff's going on with cortisol, adrenaline, metabolism, et cetera, heart rate variability. When we're going into fight or flight.
00:14:42 - Jessica Kidwell
Can you maybe just delineate what a couple of those might be?
00:14:47 - Dr. Casey Ehrlich
Sure. So, for example, if the child, the sleep is impacted. Two patterns that I often see are a child well over the age of five, like I'm talking like 1112 13, may have to co sleep and physically touch their parents in order to relax into sleep. That's because they need constant signals of nervous system safety in order to relax. Additionally, especially with teens, we see them going into a non 24 hours sleep cycle. It's very common for PDA teens in terms of toileting. What we see is especially with more freeze expressions which slows down the metabolism we see withholding UTIs and trouble going independently. There's also often what's thought of as a regression, but it's often like controlling behavior where the child was potty trained but will only use a diaper, the bathtub or part of the backyard, for example. So a lot of times these are looked at in isolation of like oh, the child is odd and has a medical issue but they're actually both related to the nervous system. So we need to look at basic needs. Also trying to understand are there sensory differences, social communication, learning and processing differences, right? These are tied back to an autistic brain. Understanding the equalizing behavior can also be turned towards self, right, if it's an internalized expression. So you have self harm or controlling one's eating, destroying one's own things, looking at not just fight flight, which is what looks like Odd, but also freeze. And finally this is a big one that gets missed, which is the constant need for undivided attention and signals of safety. So like, well, these children, the paradox is that they need autonomy to feel safe, but they also need you right there because their baseline is perceiving threat all the time. So a lot of these kids and even Tweens need constant attention from a safe person. And that's also what can look like, quote, deliberately annoying people, like not leaving them alone until they get the attention they need to feel safe. So those are what's missing when we're just looking at the tip of the iceberg. And so what I would say to a parent or a therapist or someone who wants to think outside the box is like can we explore these other things? And if those are going on then perhaps Odd isn't explanatory as a category.
00:17:28 - Jessica Kidwell
And it would be important for figuring out what the root cause is and not just stopping with an odd diagnosis. Because I imagine the treatment is different.
00:17:40 - Dr. Casey Ehrlich
Yes, and that's often where I start with parents. I'm not a clinician, I'm a researcher by training. So I don't diagnose and I work with parents who have all the acronyms or none at all. So what I'll say with Odd, like two or three things come up with families. They've either been told to do PCI T therapy, which is parent child interaction therapy. And what happens is the first half of it goes really well, the building trust and rapport and then they start introducing consequences, and it goes off the rails with a PDA child because you can imagine they're perceiving that they're going to die every time you're putting a rule down. Parent coaching, meaning like, learning how to be stricter with rewards and consequences. And I just picked this up off the National Institute of Health, but giving clear instructions and following through with appropriate consequences. So all of those strategies are the reason that people end up in my world and inbox, because it has dramatically escalated. And often that's when their child hits burnout and stops, like walking, eating, et cetera.
00:19:05 - Jessica Kidwell
So if it can be easily confused for Odd or OCD or even bipolar disorder, in your opinion thus far with all of your research and firsthand experience, is it a stand alone issue that someone could just have PDA and no other co occurring neurodivergent types? Or does it usually go hand in hand with another neurotype?
00:19:46 - Dr. Casey Ehrlich
I have two goals in life now professionally. One is to put PDA on the map so that parents get in home caregivers insurance and all the support they need. That's not aba, because that's all that's covered in the US. And not everyone can get no pair and pay for private school like me. And the other is to make sure parents don't feel isolated and hopeless like I did. So with the first goal, it's really important to build on what already exists, right? Like PDA as a diagnostic category, which is described as a part of the autism spectrum. And my son is PDA autistic. And I think most autistic advocates in the space, they say PDA is part of the autism spectrum. I think all the families that I've worked with putting in supports not just around autonomy, but also like, sensory and social communication differences has helped. And that's what I care about most, like what actually helps your child and you achieve peace. But when I work with families, a lot of families will say, my son or my daughter is not autistic, but they're PDA. And I'm not going to argue with that. Right? It's like, okay, let's accommodate and let's figure it out. And people ask me this, what's the incidence of PDA among autistics? Or what's the incidence of PDA? That's not autistic. Right? But I only work with families who have decided that this framework works for them. So it's like I have such a biased sample that I can't really answer the question. That was such an academic way of answering the question.
00:21:41 - Jessica Kidwell
I like it. It's an important threading of the needle. But I also think it's an interesting distinction because, as we both know, living in the US. And having neurodivergent kids, that getting that diagnosis is really hard.
00:22:02 - Dr. Casey Ehrlich
00:22:03 - Jessica Kidwell
And perhaps it's not necessary to know what the incidence of co occurrence is if you are identifying the behaviors that you and I will be talking about more. And it rings true for your child and you don't have an Autistic diagnosis yet, that doesn't mean that these steps and these behaviors could not be helpful for you if you haven't received the official diagnosis from a blessed organization that counts. And then my large umbrella brain, you have an academic brain. Mine goes to large umbrella. I think that the diagnostic process right now is so incomplete and so based on white male presentations of what neurodivergence looks like. And so you have girls or those who have female presenting type behaviors getting ADHD diagnoses because they don't seem autistic, because the autistic behaviors are all built around observing white boys. So black and brown individuals or female presenting individuals are not going to get their Autistic box checked and they get missed.
00:23:41 - Dr. Casey Ehrlich
Totally. Yeah, it's really complex because yeah, absolutely. What matters is supporting the child through what works for them. And non PDA autistic kids often need different supports than PDA autistic children and parents in order to sustain a family system and their finances and advocate often do need that category checked. Right. I help parents DIY it because it's necessary at this stage in history. But my hope is that eventually there is more support for families, which does require some recognition. Right?
00:24:29 - Jessica Kidwell
Well, here in the US. That's not so great because pretty much the only covered treatment or support process for autistic individuals is Aba therapy. And my understanding of your website and everything I've heard you talk about is that Aba is generally not going to be an effective tool if you have a PDA child.
00:24:57 - Dr. Casey Ehrlich
Correct. And I want to put an asterisk there though, that I would never judge a parent who had their child in Aba for a period of time or now. Because again, I work through the family system and some families, like, especially with PDA, their child can't access any school and they have to like a single mom has to keep her job or when I've worked with black families, there's a different level of risk associated with not adhering to neurotypical norms and behaviors. And in the past I've looked to Fidgets and Fries on Instagram for her work on that. So I'm not someone who is like, yes, this is the answer. In case you can't tell at this point, I come to everything, including each individual family and experience with like, well, let's experiment and let's collect data and let's try it out without judging ourselves for getting messy in the process.
00:26:08 - Jessica Kidwell
And I come to every person's individual path with the mindset of I haven't walked one moment in your shoes or your child's shoes. And if what is available to you and the only life raft that you are given at a specific time looks like Aba therapy. And wouldn't be something that I would potentially do for my own family. Gives me no right to judge what someone else does for their family. So I do think we have covered our basis on making sure that we are not completely advocating against anyone who uses Aba therapy in any way shape.
00:26:58 - Dr. Casey Ehrlich
Yeah. And just understanding that we're all operating within incentive structures and systems and blaming the individual actually can get us off track. Right. Like, we want to change the system, not attack individuals.
00:27:16 - Jessica Kidwell
Yes. So, as I said in the intro, it seems that in the UK, PDA is a little more universally understood, or at least not as foreign of a term as it is here in the US. Do you have any thoughts as to why that is the case and what's going to be the time lag to get it over here in the States?
00:27:43 - Dr. Casey Ehrlich
Great questions. You know a lot there. The Australia and the UK seem to have more awareness of this. I know that Australians that work with me get everything reimbursed, so there has to be some different level of awareness than here in the United States, because it's, like, covered by their government as a category, which always floors me. In the UK, there's the PDA Society and I think they've done a lot of research. I think also the research orientation is a little bit different in Europe, I think it's a little bit less dogmatic and rigid with, like, we must do statistical models and, like, we must have a million regression lines. Not to say that the research isn't rigorous. There's just a little bit more space, I think, in some of their peer reviewed journals in the psychology field for PDA exploration. Right. But I actually don't know why. I think the UK and Australia just might be further ahead in their understanding. My next project, which I'm diving into immediately after my launch is done and I onboard this new Cohort, is to field a survey that I've been working on and sitting on for about a year to try and improve upon how to measure this, like, more inductive research, improving upon the extreme demand avoidance questionnaire. That's the ultimate goal, so that these kids can get flagged earlier and including basic needs and internalized expression. So I'm going to hopefully push that along a little bit. But I really think that my deep sense and sort of philosophy on all of this, and it comes from reading Steve Silberman's Neurotribes, because I read about what in the 60s shifted the discourse on autism, and it was parents, right, advocating against it being like, schizophrenia or hospitalization and institutionalization. And I'm like, okay, so much of what they're saying here in the 60s is absolutely parallel to what's happening right now with PDA. And so I love working with families day to day, but I also view it strategically of every family who has the language and empowerment and the stability to make decisions that are aligned for their family is going to shift things culturally more than, like, my research project. Right. Because what changes people's behavior? You put your money elsewhere, you put your attention elsewhere, you put your kid in a different school. And if enough people do that, then people feel the pain and need to change. Right. Lots of people have done research that nobody's read, and mine could turn out the same way. But I feel like I'm working towards a movement with parents to shift things.
00:31:00 - Jessica Kidwell
Yeah. So if we could get a little bit more granular sure. About what PDA could look like. Obviously we know that the adage is if you've seen one autistic individual, you have seen one autistic individual. So this is not a blanket list of what is possible for a child, teen or an adult to have with PDA. But are there some generalized in addition to what you read for the odd? Or could we talk a little bit maybe about how that presents?
00:31:43 - Dr. Casey Ehrlich
Sure. So I'm going to go through the five categories I look at but use really like day to day examples. So the first category is a survival drive for autonomy. And the way I think about it is like, it often looks like defiance, like screaming, hitting, like a hair trigger. Fight response can be biting. It could be like you're trying to put your kid into a car seat and you're stunned at how much strength they have because they're physically fighting you. And adrenaline is going through them, trying to carry them up the stairs. They're physically fighting you, like every touch point to move through a routine. But it could also be flight. Right. And that would look more like a kid running out the front door, running from you in the house, hiding under blankets, cowering in a corner. There's a lot of walking on top of couches or on windowsills and climbing on top of cars, like in school parking, parking lots, or like scrambling away from you in the car. That's flight. And then freeze can look like disassociation, like where there's like a blank look in their eyes or where they're not speaking, where they're shutting down, curling up into a ball and sort of non responsive. So that's like the first tier. That's like full on fight flight. Right. The second tier is the equalizing, which is like the precursor to the full on fight flight, which is sort of like they're negotiating to get back to a place of safety. But what it looks like is challenging behavior. So I'll give you examples. Like you say something like, oh, you stayed with your grandmother when I was having William at the hospital. And he might say, my older son might say, no, I didn't. I was at home. Right. And if I respond, he'll fixate on arguing with me even though it's not true. Or I'm going to start with verbal equalizing. It might be telling you that you're saying it wrong, changing your words, speaking over. You speaking over. You talking about another topic. Like if we're trying to walk out the door, introducing, let's talk about everything that has to do with Pokemon, right? Sort of to avoid the demand or get back in control. Then there's more physical equalizing. I'll give you an example of my son. This was probably a year ago. For a while, when he was establishing trust with the OT, he would walk in and find all the blocks that were stacked up and immediately destroy them every time. And the way the therapy session goes depends on how the person responds, right? So it's like needing to feel equal to or above the person. They can often need to be above them in order to get back to a place of safety. And it's usually directed at safe, the safest or the weakest, right? So often at moms, often at siblings. And this might look like accidentally knocking down toys, repeatedly saying words in the vicinity of a sibling, knocking things down, destroying things, just controlling where they can sit, whether they can go to the bathroom, how a word is said, whether the lights can be on, et cetera. Then the third category is high Masking, which is a term I learned from Rachel Dorsey, an autistic SLP. And this is very clear for most PDA families that I work with, which is like, the child seems fine or compliant at school and then completely explosive at home. And this is both an internalization of the threat response, more freeze and imitating neurotypical social norms. I think one of the reasons that this gets missed so much is because they do look totally different in two different scenarios. It's not always the case, but it's often enough that I put it as a category. The fourth, this is a category that I think also helps it be explanatory, which is constant need for undivided attention. Meaning like, the child will seek your undivided attention and make it uncomfortable enough for you that you give it to them because it's a survival need for nervous system safety. So often what this feels like or how it plays out to a parent is you can't do anything at the same time that you're with your child, including paying attention to another sibling, speaking to a partner, doing dishes, doing laundry. So you can't like, I had a grandmother ask me about this because I did a grandparents course and she was like, well, when I was hanging up laundry and doing dishes, I was always speaking and singing and paying attention to my kids, giving them undivided attention. And I was like, two things are going on. One, that's actually not body based nervous system safety, and they don't communicate necessarily verbally, right? They're articulate, they're social, but the safety is communicated with your body being focused on them. And then finally is the cumulative nature of nervous system activation, which just means you basically never know if you're thinking about it. You never really understand when they're going to blow up because it's not like, oh, I always know that this sound. Will cause a meltdown. It's like the sound might be totally fine for ten days in a row, and then on the 11th, it's full on fight flight. And this is why parents describe it so often and why it's on my website of like, I feel like I'm walking on eggshells and that it's always escalating. And so we really have to look at that cumulative impact rather than just like what happened right before to cause this behavior. It's a tipping point.
00:38:11 - Jessica Kidwell
So I just want to take a moment and pause and just kind of reflect on what most Westernized parents think parenting is supposed to be like. And what you just described to me literally breaks my heart because I can only imagine not only do you have a child who is in distress because they are having a nervous system reaction, but because that's an invisible process on the outside, it looks like crappy behavior. And then parents must spend so much time feeling, like, failures and that they're doing everything wrong, and that if they just did something a little bit more, they held the boundary a little bit better, or they read the right parenting book, that the child will be better. And that I can only imagine that the amount of parents that come to you, by the time they get to you, they have to feel so defeated. And then especially as kids get older and those behaviors and the internalization gets scarier and more dangerous and life or death related, it's got to be such a lonely, scary space for parents.
00:39:47 - Dr. Casey Ehrlich
Yeah, absolutely. I think that's part of what drives me to get my butt on social media every day. It's like, I'm just like, I would have killed for this four years ago, and I really just don't want parents to think their kid is bad or that they're bad because they're not. But you feel that way for sure. Yeah. It's so confusing too, because it doesn't look like your child is autistic on the outside, especially if they're more extroverted.
00:40:24 - Jessica Kidwell
Yeah. And just everything you describe, one would think, and I love that you do grandparent courses. I think that's incredible because I can only imagine, like, in our day, more rules, they just need more this, you need to enforce those consequences more. You need to hold that boundary. More has got to be the messaging that most parents hear externally and what I would be saying to myself internally. And the reality is that parenting style that is lauded and held up as what we're supposed to do is actually going to backfire and make things worse, right?
00:41:06 - Dr. Casey Ehrlich
00:41:09 - Jessica Kidwell
So what does seem to work?
00:41:13 - Dr. Casey Ehrlich
Yeah, I mean, I think the good news is there's a paradigm shift happening both in the neurodiversity space. Like, the fact that we're talking about neurodiversity, I think is a recent thing. And there's a paradigm shift, I think, slowly happening amongst some of the practitioners and clinicians like Dr. Ross Green and Mona Dellahook and Dr. Dan Siegel and Tina Payne Bryson. Their work is really looking at the root cause and body basis for challenging behaviors. So I think luckily, it's changing somewhat slowly. But I think a lot of what we can learn well from the neurodiversity community, we can learn like, oh, the different ways that the brain works and the body responds and how we can support that. And then from the other paradigm, there's lots of tools that are coming out, like collaborative problem solving from Dr. Ross Green and declarative language from Linda K. Murphy. And what I've done is sort of focused on how can we even get your child's nervous system supported enough so they can access those more collaborative parenting strategies? So you have to get the child out of burnout and establish trust first. And that may require going really far into lowering demands and providing autonomy to the point where it can feel really counterintuitive. And that's really where we work, where my role is of supporting parents in making a true lens shift of how they see their child, so that over the long term, they can support the root causes of the behavior, like through accommodations, and not use rewards and sanctions, but rather through that process of always providing autonomy and de escalating. Right. I get a lot of hate on social media for this, but I'll do little videos of my son yelling at me in a moment of activation. The first thing that goes through my head, which is like, you're not allowed to talk to me. A sacred pause reminding myself how his brain works, viewing it as activation, stepping back into my agency as a human and a parent and realizing I can accommodate him. So let's get his neural pathway going back to the frontal lobe over and over and over and over again. And that means I might say, oh, I'm sorry. I didn't get that fast enough for you. If he's shouting for popcorn on the couch or if he yells at me for turning on a light, I can say, oh, honey, I can turn it right back off. I'm sorry. Right. But that really requires a real paradigm shift, which is why I call my signature program a paradigm shift program because you really got to work at it.
00:44:25 - Jessica Kidwell
So I want to be like total devil's advocate, total maybe this is what you get on social media. My devil's advocate question is, aren't you just giving them permission to be selfish jerks? And how is that living in a human society where collaboration and we don't always get what we want? That is ingrained in everything? What is your response to those types of comments of you're feeding the beast? What are you doing? I can't do that for my child. Then they'll just become selfish and unable to do anything for themselves.
00:45:14 - Dr. Casey Ehrlich
Sure. So it's a great question. Doesn't trigger me that you asked it, it's okay. But I want to talk about three things in response, maybe four. Okay? So the first thing I'll say is this is why I think it's so important to remember that it's a nervous system disability, right? And what that means is if there is nervous system activation that's happening all the time. This isn't behavior, right? It's what my body would do, the swear words I would say and the punches I would throw if someone was with a gun to my head or I was in a car crash. Okay? So the point of de escalating consistently and continually is not to reinforce a behavior. It's to actually, from my perspective, do two things completely reestablish safety in their body and completely reestablish safety in our relationship. So the whole point is like and how I coach parents is like that's data about what's going on inside their body. And we can accommodate that. It's not always taking swear words at you. But so often we make kids do things or respond in a certain way that actually aren't a health and safety issue, right? It's fear based. If you don't learn to say hi to your grandparents today, you're never going to. So what we want to do is get them back in their thinking brain and signal to them over and over and over again that they're safe because then they can learn from us and collaborate, right? And this is why I think of it as sequential, right? And so people try and make things binary of like, oh, you're saying there's no limits and consequences and it's chaos. But what I'm saying is we have to understand where the child is and if they're in burnout and you have no trust between you, we're going to have to err on the side of reestablishing a relationship and getting them in their thinking brain more consistently so that they can actually access rational thought and learn. Because in the moment, even if we want to teach them or think we should or respond with behavioral strategies empirically, it just escalates. And that's why people come to my page, right? It's not because it's a philosophy. It's because they've tried all the behavioral stuff. So it's a disability. It's sequential. It's getting the child back into their thinking brain more consistently. And I'll say both from my belief system and my experience with families and with my own son, these children, I believe are good on the inside and that we're not feeding the beast by supporting them. We're getting them back to a place of safety so that we can see what's behind the threat response. And I understand that there can be comorbidities. Like just because your PDA doesn't mean you can be abusive, right? It doesn't mean that you can't also be something else or a jerk. It's just that so often the default is if we don't reward and punish this human into goodness, then we are going to quote let them be bad, but I just don't believe any of them start bad, especially with children. Right. And I agree with Ross Green on that. Like kids do well when they can.
00:49:01 - Jessica Kidwell
I think it's so important, the distinction that you made a little bit earlier on the demands that we as parents put or school systems or caregivers put on kids many times, more often than not, are not based on health and safety issues. We all operate from a place of wanting to be in control. You are going to do this because I told you to do this, because I'm the authority figure, because it is your job to listen to me. And I think we forget that a lot, that we're mirroring that same behavior. We are having a need to assert control in order to calm whatever is happening in us, whatever is being activated within us as parents in that moment, because we're not feeling respected or we're not feeling heard or our own autonomy feels attacked. And that sometimes if you are willing to look at it through the different lens, it's the letting go of that tug of war rope that might from the outside look like giving up or giving in. But in actuality it's just like I don't have to have this fight right now. So I think I feel a lot more clear on what it looks like and how it differs from other conditions. I am wondering if anyone is listening to this and they are feeling curious or wondering if this might be what's happening with them or their child. What is step one? What would your advice be since it is not universally recognized? It's not, oh, we'll go to your provider and your provider can facilitate this questionnaire and we'll find out if your child's PDA. So what do we do?
00:51:13 - Dr. Casey Ehrlich
Yeah, that's a great question. One thing is there is a PDA Affirming Excel spreadsheet of practitioners and clinicians in North America that's available. I have it on my auto reply if parents want to reach out, but it's also on my link in my bio so they can find clinicians. And what the clinician will do is probably use the Extreme Demand Avoidance questionnaire. Also recommending, if they want to go that route, thinking about finding younger practitioners who are working more with adult presentations or complex expressions, female expressions. Those are some of the buzzwords we can look for. I have a Master class that I'm turning into a Free Freebie, which is my Clarity class, which goes through these five characteristics with some handouts to help parents determine they think their kid is PDA. But I often encourage parents to just start trying stuff, right, just try and use declarative language and see what shifts, or try to not ask so many questions and see if your child starts to talk more. Right? Because again, I think what matters is how our child experiences things and if we can tune into observing not just what they say to us, but what they communicate with their body language and their basic needs and their regulation, then we can start to think about what works for our family.
00:52:57 - Jessica Kidwell
So what's declarative language?
00:53:01 - Dr. Casey Ehrlich
Oh, yeah, sorry. Declarative language is so there's a book called The Declarative Language Handbook by Linda K. Murphy, and it outlines how to use language so as not to activate the nervous system for neurodivergent individuals or kids with social learning differences or disabilities. So what it means is just instead of saying, like, what do you want for breakfast? Which a direct question automatically activates the threat response for a PDA kid, or saying, Eat your breakfast, which is an imperative, also activates the threat response. So in both of those cases, the child's rational thinking just shuts down, and they can't answer you, or they'll growl or say, Stop talking, or whatever. Well, I suggest that parents get physically lower than the child so as not to activate that perception of being above them. Really focus on their body signals of safety, which comes from the trauma literature of signaling safety mammal to mammal. And then use declarative language. Like, I noticed you haven't eaten any breakfast, or I can get you some popcorn as, like, a trial balloon. They can respond to that. Instead of a lot of questions or verbal imperatives.
00:54:22 - Jessica Kidwell
I would benefit greatly from doing more of that in my life. I have had to do some real self reflections on the amount of words. Just the amount of words alone that I use. Just less is definitely more for almost everyone in my life, but especially for my kids. And you referenced your website and all of the authors, the resources, the books that you and I have talked about. I will be linking into the notes of this episode for anyone who feels like they want to be furiously writing everything down. Let me do that for you and check the show notes. But how do people follow along with what you are doing? Casey and what are the services that you are currently offering?
00:55:17 - Dr. Casey Ehrlich
Well, I've set it up so that there's a lot of free ways you can DIY it so you can come to Facebook. I mostly hang out on Instagram. I also do TikTok and YouTube. So all the videos I've ever done are on YouTube for sharing. And if you want to get your feet wet, you can take a $25 class a pre recorded. But the services I offer live with me. I have two programs that are live. One is a two week accommodation intensive, and I also bring in some social science to help parents track progress along basic needs fight, Flight, Freeze, and Connection. So that'll be in May, and that was really fun. It includes a community for two weeks and, like, troubleshooting. My signature program is a three month container with families, and that is the paradigm shift program. So the way I think of it is, like, we have a semester together and I do some teaching. I do Q and A's and spot coaching, and then we connect in Slack for support amongst each other, but also questions and real life day to day stuff. And then I do offer coaching, but it's by application only, and I currently have a waitlist. And I do do professional trainings, but those are, again, like, case by case, right?
00:56:52 - Jessica Kidwell
And how do I find you?
00:56:54 - Dr. Casey Ehrlich
Yes, you can find me at the Handle At Peaceparents or my website, www. Dot@peaceparents.com or my podcasts pdaparents or at peaceparents.
00:57:10 - Jessica Kidwell
I'm everywhere you really are. Sometimes it's hard. I think people want everything for free and they don't realize that you are actually professional that needs to pay bills, and that's why there are paid options. But you are quite giving with a lot of the DIY options that are out there on YouTube and TikTok and Instagram and on your website and through your podcasts that anyone can access. And so your clear passion and purpose to try to help as many people as you can is clear.
00:57:56 - Dr. Casey Ehrlich
Casey, thank you.
00:57:58 - Jessica Kidwell
I'm very grateful to you. You have helped me tremendously today. I feel more informed and knowledgeable about PDA. I think I would be able to answer my friend that question if she were to ask me again. So thank you so much for your time today and for all the work that you're doing. I really appreciate it.
00:58:23 - Jessica Kidwell
Neuroversity is hosted and produced by Jessica Kidwell. Our audio engineer is Jarrett Nicolet at Mixtape Studios. Jarrett also created our theme music graphic design for Neuroversity by Kevin Atkins. Web support is provided by George Fox. For more information about this episode, ways to support the podcast, or anything related to Neuroversity, please visit our email@example.com. You can also follow us on your podcast app and social media sites. We are at Neuroversitypod on Instagram, Twitter, LinkedIn, and Facebook, and if you like what we're doing, please tell others about Neuroversity and give us a review on Apple podcasts. There's plenty of room for more curious minds to enroll.