Interview between Speaker 1 (Meg) and Speaker 2 (Casey Ehrlich)
Episode 66: Helping Autistic PDAers feel Safe
[Introductory note]
Hey, Meg here. Here’s one of my pet peeves as an occupational therapist: it’s taking continuing education trainings that have absolutely no impact on my work. You know, the ones that give you a framework, but don’t tell you how to apply it? Or this is maybe even worse to me — the ones that just don’t say anything impactful at all. When I founded Learn Play Thrive, my goal wasn’t just to provide continuing education trainings, it was to provide trainings that leave therapists feeling really confident at using the new strategies in their actual work. And also, that help therapists feel empowered to work in a way that is more aligned with their values. The reception to this from the therapy community has been incredible, and Learn Play Thrive continues to grow. We have neurodiversity-affirming continuing education courses that are registered for AOTA and ASHA CEU’s. We continue to add to our course catalogue, and we have three free trainings. You can check out everything we have to offer at the Learn Play Thrive Education Hub, which you’ll find at learnplaythrive.com/trainings/. Thanks for being here.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 66 with Casey Ehrlich. In this episode, Casey and I really go into the details of how autistic kids with a PDA profile experience the world and how we can better show up to support them in a way that cultivates true safety, self-acceptance, and belonging. If you’re not familiar with PDA, you may also want to go back and listen to Episodes 23 and 24 where I interview Harry Thompson and Kristy Forbes, who are both autistic PDAers. I’ll tell you about our guest: Christy Ehrlich is a coach and educator to parents raising PDA autistic children. She’s the founder of At Peace Parents where she has tons of resources for families, as well as the At Peace Parents podcast. She’s also the co-founder of the PDA Parents Community and podcast. Casey has a PhD in social science and brings her background in social science methodology and research to take an objective and non-judgmental approach to understanding PDAers and supporting families. She’s also raising two sons, one of whom is PDA autistic. And this interview Casey gives us some key shifts we can make in how to support PDAers and these changes can truly be the difference between driving a PDA child into burnout and helping them begin to find enough safety to truly thrive. Here is the interview with Casey Ehrlich.
Hi Casey, welcome to the podcast.
Casey:
Hi, Meg. Thanks for having me.
Meg:
It’s exciting. I love meeting people — Zoom, face-to-face — who I love following on social media. And as you know, I love following your Instagram account and learn so much from it. I’m really thrilled to talk to you today and want to start with your story. You have a very interesting and very personal story on how you got to this place of teaching others how to support PDA kids. Can you share a little bit about your journey and how your work changed and your self changed after having your son?
Casey:
Yeah. Well, I didn’t change right after I had my son because I was fighting the change. So, my professional background is as a social scientist and methodologist. So, I have a doctorate in political science and methodology meaning like, you know, surveys, statistics, econometrics, all that stuff. And I finished my doctorate; I wrote my dissertation. Well, my son was an infant. I had to take off some time because he was quite difficult to soothe. But at that point, I was just like, “Oh, he’s a colicky baby, I’m not that great at being a mom. I’ll just dive back into what I am good at,” which is research.” And then, we were living in DC, and I got a job at the Pew Charitable Trusts and was working on a team that ensured research integrity, which is something I bring to my work now. And my son had a crisis. And he, after my second son was born, William, and he, you know, he had always been quite challenging and defiant, shall we say. He also, like, couldn’t play independently. But I was a first-time mom, and I just thought, “Well, you know, I guess he’s just not good at playing independently.” But I never really understood why my husband and I were so much more exhausted than our peers, and like, how they could go out to dinner once Friday hit and, you know, it just, it was very illustrative, I think, of what parents feel, which is like, “It’s me. Like, I’m doing something wrong.” And he started having like what on the surface looked like behavioral problems and defiance, and having big meltdowns and screaming, running, hitting, attacking. And unfortunately for everyone, we responded with traditional parenting approaches. And as things escalated, and talking to the pediatrician, it was like, “You’re not being strict enough, you’re not doing the consequences well enough.”
So, we were doing 1-2-3 Magic, which is like timeouts. And so, I was actually like holding the door shut, as he screamed. It’s like traumatic. And he stopped eating. I’ll just cut to the chase, but he eventually stopped eating, stopped walking, stopped speaking, stopped making eye contact. And that’s when I realized the impact on like, basic needs was when I was like, “Oh, this is not behavioral.” But when I talked to the pediatricians, you know, when he was just cycling through these hours-long rages. I mean, it was like, it seemed like kind of like a feral animal. And I don’t say that disparagingly. It was like he couldn’t — he couldn’t access the frontal part of his brain. Like, he was completely in survival mode. But at the time, I didn’t understand it. And he was like, scared of me. I would try and soothe him, but he would like scramble away from me. And he’d start screaming more. And my husband and I would like take shifts, like I would go upstairs and I would just like, would try and calm myself and like, lay on the bed until he calmed down. But like, if I would turn to look, he’d like run away and start screaming again. Or he try and hurtle himself down the stairs. It was quite traumatic. And in the evenings, we would just like take turns, because anything would set him off into these rages. So, when I talked to the pediatrician, they gave me like two different lines of advice. They’re like, “Well, why don’t you like take him out for some ice cream?” or, “Why don’t you check him into children’s psychiatric hospital emergency room in Washington, DC?”
And my mother-in-law was like, “Don’t do that. If you can’t handle him, bring him to my house.” And then, he shut down completely. And like, went into — I think, now, I understand he was in disassociation, because he wasn’t like, violent or raging at her house. So, he was there for four days, because I had a newborn infant and like, I would have to run out in the street to protect him. And it was just really scary. And so, I decided to quit my job. And I, at the time, was like, “Oh, I’ll take six months and like figure it out.” And I also had this amazing friend who works with a play — she’s a play therapist — and she works with primarily autistic children, but also children with learning differences and brain differences. She started her career in ABA and quickly moved out of it because, you know, trauma. And then, was trained in DIRFloortime and uses that approach with her business. So, she has this network of Profectum and DIRFloortime-trained therapists, SLP’s and OT’s, and I had never heard of any of this. I’d never heard of neurodiversity; I’d never heard of co-regulation, play therapy, nothing. So, she was like, “Just come here.” And we did like an eval with an OT. And, you know, they didn’t name pathological demand avoidance, but they pointed out things about regulation and pointed out sensory differences, explained it to me. And there was one point when he was doing the evaluation and like, sort of gravitating towards certain vestibular and proprioceptive, like big movement activities, and he, the OT was like, “You can climb into the hammock swing with him.” And he put his cheek against mine, which was like the first — I might start crying — the first like, physical contact that he had voluntarily made in like, years. [Pause] Sorry.
Meg:
No, don’t be sorry. Take your time.
Casey:
I just have a lot of gratitude for these professionals. I know that’s your audience. I’m like, highlighting that. But it was just, it was very scary. And I landed with these lovely professionals who did not judge me or the child. And that was like the beginning of my shift. So, my friend, the play therapist, also modelled for me an alternative to the only way I knew how to parent which was like, you don’t have to do rewards and consequences. We can do, you know, co-regulation, and sort of modelled it for me because she had a son the same age. So, I got to see it. And then, I came home from Chicago and was like, announced to my husband, like, “We’re gonna start doing like co-regulation, parenting, and gentle parenting.” And he’s like, “What does that mean?” I’m like, “I don’t know, but I’m gonna figure it out!” And, you know, for about a year, we worked through the sensory processing lens. We had two amazing occupational therapists, one in the DC area, who we were going five times a week. And she would like, sometimes the entire session, she would just push him back-and-forth on a hammock swing, and he would like scream if he would lose my line of vision. So, he was like, starting to get more safety with me again. And, you know, I would at first be hovering and like trying to correct him and be like, “No, he doesn’t need to swing it 100 times.” And she just like, let she completely let him determine exactly how she approached him. And it was wonderful.
And so, we moved to Michigan. And you know, my research brain, I’m researching everything. But also, like trying to implement in the home and observe empirically, like, what’s the data. Like, I had Excel spreadsheets, and I was sort of applying all my research skills to try and understand. And I was even writing a secret blog on sensory processing disorder. And like, nothing made sense, because I was like, well, if it’s this, why is he still doing that, right? And it was like, the causality did not make sense to me. And then, I stumbled upon pathological demand avoidance and another mom in the community where I live, and we started a podcast together which is PDA Parents and found, through an OT — you guys are great — a bunch of other parents in the area, who also had children they thought were PDA. So, like during the pandemic, we would text throughout the day, all day. And then, you know, it expanded into learning from not just PDA autistic adults like Sally Cat, Harry Thompson, Kristy Forbes, but also Neuroclastic, and Neurodivergent Rebel, and like all — I thought of it like a lit review, kind of I don’t know if that sounds too academic, but when I had the PDA Parents Instagram, I would just follow all these accounts and try and see patterns and understand the internal lived experience.
And, you know, I personally, I don’t identify — I’m not PDA and I don’t identify as such. But like, I have panic disorder. And I was diagnosed after my son was born with postpartum OCD. And so, there are elements of the nervous system that I do experience, maybe not why I’m having fight/flight. But it’s not based on, “Oh, I’m perceiving a loss of autonomy,” but there are elements that I started to feel empathy and compassion for once I went through that lens of the nervous system. I was like, oh, this makes sense. And then, you know, parents started contacting us and I started a business to respond to the demand. And it’s grown since then. And, you know, I think part of my contribution, I hope, is the large end sample, big picture view. Because, you know, I love learning from autistic adults. And I think sometimes it can be hard to notice variability if we don’t take a bird’s eye view. Like, I think it’s complimentary. So, yeah, I bring that research brain to my work in how I coach parents, because it’s really based on like, what’s the data that you see in your home? And how can we make adjustments based on what your child’s body language is telling us?
Meg:
Yeah, you really do bring that to your work. It’s very nuanced. It’s very specific. And it’s clearly very based on a really strong interest inside of you to understand the needs and drives of PDA kids. And I just want to highlight how it comes up a lot on the podcast, where people say, “How do we work with parents who are asking for a behavioral approach?” I had one guest say, “You know what, they learned that from their medical providers.”
Casey:
Yeah.
Meg:
And you’re highlighting just how harmful that is. You went to your pediatrician and said, “What do I do?” And then, you did what they told you to do. But it conflicts with your internal values and your sense of what’s right and wrong, and what your child deserves. And at the same time, you’re trying to support your child, and this is what the doctor told you to do. And I think that really highlights how much this change needs to go all the way to pediatricians.
Casey:
Oh, yeah. Absolutely.
Meg:
They’re often the first ones advising parents. And it’s not an easy journey. I appreciate you sharing that. It’s a really personal story of how you got from there, sort of relentlessly, trying to figure out a way to support your son that was actually supporting your son. And, you know, I hope over time, we’re making it easier for families to find that and, you know, it’s interesting to me that your path there was the OT.
Casey:
Yeah. Yeah, I love OT’s. Yeah, I mean, to me, like, how I think of it is like, my role also in the movement is like, through parents. Because nothing changes things faster than large groups of parents taking their money elsewhere. Like out of ABA clinics, out of, you know, or changing practitioners. And that’s what I coach parents on, of like, if they are gaslighting you or telling you things that are counter indicative, you have a choice. Like, you know, obviously, insurance is involved. But the second line, I always view as OT, because they’ve always been so — at least the ones I’ve encountered — so focused on, like, what does the child actually need, and they’re experiencing their child in real time.
Meg:
That is not always the case. OT is also steeped in behaviorism in a lot of ways, and in a lot of places. I’m glad that’s been your experience. And I have people who have come to Learn Play Thrive from parents saying, “Hey, you should take this course,” or, “You should listen to this podcast episode.” And that therapist goes, “Oh, man, I love this. Let me learn more.” So, I love that you’re coming at it from there. All right, I want to zoom out and do the foundational piece as we dive more into some of the content. PDA has a lot of definitions, even the acronym, right. Some autistic folks have renamed it the Pervasive Drive for Autonomy. In the medical world, it’s usually called Pathological Demand Avoidance. Can you give us your working definition of what PDA even means?
Casey:
Sure. So, the definition I use — and this was actually come to through some really amazing conversations with an autistic doctor, Dr. Mel Houser. I hope she doesn’t mind me mentioning her, from All Brains Belong.
Meg:
Oh, she was on the podcast.
Casey:
Yes, she’s amazing. So, she kept pushing me of like, “Well, don’t all neurodivergent brains need autonomy,” right? Isn’t this a need for all neurodivergent brains? And what makes it different between like a non-PDA autistic and a PDA autistic individual? And, you know, we were sort of going back-and-forth as like academic brains, right. And I had done some preliminary research with families about basic needs being impacted and disabled by cumulative nervous system activation. And I saw a strong pattern of, you know, in accumulation, nervous system activation disabling children from being able to access one or more basic needs. So, how I define it is ‘A survival drive for autonomy that consistently overrides other basic needs, such as safety, toileting, eating, sleep, and/or hygiene in the moment or in accumulation’. And so, the PDA society definition is an anxiety driven need for control. And I don’t necessarily think that’s like, completely wrong, because anxiety is on one side of like, one part of the continuum of nervous system activation.
The reason I distinguish is because anxiety is such a well-established concept. And it often implies things are ruminative cognitive, and that you can think about them. And what’s actually going on for the PDA individual is that it is a subconscious reflexive response that can sometimes be in contrast to their feelings and cognition, right. So, like, you know, around the holidays, a PDA kid might get really excited and happy about Halloween, but they’re activating and they’re going into fight/flight because of the perception of expectations around saying, you know, saying, “Trick or treat,” or wearing a costume at a certain time, because all these represent perceived losses of autonomy and equality, even if they’re societal, and not directly imposed. And so, that’s like, that’s the crux of where I think we need to distinguish. Additionally, anxiety can be effectively treated by things like exposure, and encouraging resilience, and pushing through some triggers. And I understand that because I’m a severely anxious person. And like, if I didn’t expose myself to certain things, we wouldn’t be here talking together. But for a PDA child, if we use those approaches, we’re actually putting them at risk of trauma. And so, that’s why I’m hoping to like the conversation or do my part more towards nervous system and away from, you know, sort of a term that has a connotation of like, “Okay, let’s give them medication and expose them.” And that’s not necessarily going to support the child.
Meg:
I appreciate that definition. And it really does ask us to think more about meeting the child’s needs and less about changing the child. Can you talk a little bit more about some of the misconceptions that you’ve heard or even previously thought about PDA?
Casey:
Yeah. I mean, I think a big one is that all PDAers are explosive. And this is why I think the large end or like having a big group of cases and understanding all the different expressions is so important because my son’s extremely extroverted and explosive, right. That’s his expression externalized. And there’s a lot, I think, at least when I started, there was more information about the externalized expression. However, through my coaching and work with families, I realized that the internalized expression is just as prevalent and can express very differently but that internal nervous system mechanism is actually the same. But a pattern I’ve noticed is that families with children who have that internalized expression will come to me much later, like when the child is a teen because the team will hit burnout. But they’ve been a pretty — they’ve been a compliant, like, great student, not explosive, and sort of turn that equalizing behavior inward with, you know, destroying their own things, self-harm, eating disorders, et cetera, instead of towards a parent, or a sibling, or a friend, or a teacher.
Meg:
Can you explain what an equalizing behavior is for a PDA child?
Casey:
Yeah, sure. So, this is what Kristy Forbes has labelled ‘levelling’ or ‘compensation behavior’. And I call it ‘equalizing behavior’. So, it is, you know, what we just spoke about was the internal nervous system experience when a child’s brain perceives a loss of autonomy, freedom and choice, or equality, or what Kristy Forbes calls ‘balance’. And the behavior that we see is not the thing, right, but we see it. And that’s them trying to actually get back to nervous system safety. So, what this can look like is very controlling behavior, or destructive behavior, or verbal behavior that can be distressing. So, let’s put it in the context of an OT clinic or a clinic with a therapist. So, my son, for example, loves OT, but he perceives a loss of autonomy and equality because he’s walking into the space where he’s not in control. So, the first thing he would do for a long time was just, you know, see something that was built up by the therapist or organized and come over and destroy it. And if the therapist let it go, they could be back to an equal place, right? But the trigger as a parent, or a therapist is like, “Oh, don’t destroy my stuff,” right? Or like, “You’re not supposed to do that.” It can also be verbal equalizing, like correcting everything you say, or, you know, controlling behavior, like, you know, in an extreme, like with my son, he would — and this happens for parents who control when you can use the bathroom, if you can eat in your line of vision on a like, towards the screen. But for therapists, it might be a little bit more subtle. Like, in a game, being like, “No, you can’t do it that way,” or changing the rules of the game. And the accommodation becomes understanding like, oh, this is an expression of nervous system activation. They’re trying to get back to a place where they’re not activated, so we can accommodate it. And then, on the other side, focus on whatever activity you’re working on. But it feels counterintuitive.
Meg:
It does. I want to linger here for a second because you give some examples on your own Instagram page about how you respond to those equalizing behaviors from your child in a way that is the opposite of conventional parenting wisdom. Can you give us an example of that from your life?
Casey:
Sure, I can give you an example from this past weekend, when — or the past week — when all the kids were out of school because there was an ice storm. And so, the school was closed. And I was there with some of the other moms from his school. And he was playing football. That’s one of his current special interests with his friends. And I was sitting there with these moms, and I don’t know them very well. And they had ordered pizza for the kids. And like, I think to them, although my son has a service dog, he looks pretty typical sometimes when he’s regulated. But he came over to me and was like, “Move, get out of the chair.” And I got up and got out of the chair. And I was like, “Okay, honey, I got you a pizza.” And I flipped it upside down, because he doesn’t eat sauce, right? Like, but he wants to be included to eat the pizza. So, he — I understood it as like, he’s activated because he’s masking to a degree. And he’s coming over, wanting to appear typical to eat a piece of pizza that has sauce on it. And so, I’m a safe person. And so, he’s going to equalize against me. And what I can do as a parent is to choose to see it as like, I have agency and I can support his brain to get back to the thinking part so he can eat and hang out with his friends. And so, I’m not gonna make a big deal out of it. And I’m just gonna get up and be like, compassionate.
Meg:
And what would you say to somebody in that moment who said, you know, “You’re teaching him that it’s okay to talk to people that way. You’re reinforcing that behavior. And that’s not going to work for him in the world.” How would you respond to that criticism?
Casey:
Yeah, absolutely. So, first, I would say like, “I’m not open to you.” Like, I’m not open to your feedback. But —
Meg:
I love that boundary. Say it again.
Casey:
But, you know, like, if I felt like it was a genuine question, I would actually probably say — and parents ask me this all the time, all the time. And I think it’s a valid question, because it can be scary to think like you’re reinforce, quote, ‘reinforcing’ behavior that parents think will lead to like, they won’t have friends, or they’ll never learn or, you know, in an extreme, be an abusive spouse or whatever. And what I say, there’s twofold. One, like, we just have to think about the brain and the two parts. Like, they’re either in the amygdala, the limbic system; or they’re in the thinking brain where they can access rational thought and emotions. And when they’re equalizing or in full on fight or flight, they’re not there. They’re not in the thinking brain. They’re just in their panic mode, which all of us have been in and say and do things we wouldn’t do otherwise. Like, if someone comes up to me with a gun in a dark alley, I would scream, the F-word, hit, and run. So, we think about it like, okay, this is an opportunity, let’s just go down that neural pathway to the other part of the brain, because they’re not processing in that in that survival part. And so, they’re actually not able to learn that this is the, quote, ‘incorrect’ behavior.
And then secondarily, I believe that one of the best ways to teach a PDA child how to manage their nervous system disability is to model for them unconditional compassion and objectivity around what’s happening. Which is like, “Oh, there —” my son calls it venom, “I’m like, oh, there’s venom.” I don’t say it in the moment. But I might reflect on it later with him and model for him, like, we can stay calm. We don’t have to judge ourselves. Like, this is something that happens. And like, he’s eight, right? So, it’s gonna take repetition a thousand times of me doing that for when he’s an adult, and he has that activation still and he can think back to me. And I see it where he’ll use phrases that I use to, like, soothe himself of like, “It’s okay,” or like, sometimes he’ll use it back to me where like, he’ll be like, “We can slow down, love,” you know, because we’re giving them the language that they’re going to use to manage their nervous system when they’re adults. And so, if we’re reactive, and we’re responding with another activation, like, “Stop saying that,” we’re going to put them further in the survival brain and rupture the relationship. So, it’s just counterproductive.
Meg:
It is. You talked in the first question, when you were telling your story about how you learned to access empathy and compassion for your son. And I think asking us to take the perspective of your child who’s in fight or flight is a helpful way to access that, right. Like, thinking to myself, if I were in some sort of situation where something felt scary to me, where something either was threatening or triggered some sort of past trauma. And I had fight/flight/freeze response, and somebody said, “Meg, it’s not okay to act like that right now. I need you to do something differently.” That would just send me further into that response. It would teach me all kinds of negative lessons, like you’re not safe, your needs aren’t okay. All these things that we know better than to teach children now, but we haven’t quite applied it to these moments, because we don’t see it as a fear response. We see it as a behavior.
Casey:
Exactly, exactly.
Meg:
It’s such a useful shift. I want to sort of tie everything together with some case studies. Your examples are so useful. Can you give us some de-identified examples from your work supporting families of how you introduce strategies that might start to shift things for a PDA child?
Casey:
Yeah. So, the first thing we usually work on is that understanding that we just talked about, and that’s a hard one to make the shift. And we talk also about cost-benefit decision making. Like, is it worth the activation?
Meg:
Wait, pause there. So, you work with the parent to say, “Is this outcome that you’re trying to get the child to do right now worth the amount that it’s going to activate their nervous system,” is that right?
Casey:
Yeah.
Meg:
Which relates a lot to the interview on the podcast with Amanda Diekman, who just talked about reducing demands as one of our most powerful strategies. And I love this tie in that sometimes it’s ‘Is this even worth it?’. Okay.
Casey:
Yeah. No, absolutely. And I think we talk about cost-benefit and identify like, where is there a fear cost, and where is there a true cost. Because often, the parents are perceiving it as like, exactly as we said, if I don’t stop this behavior now, they’re never gonna get into college and have a relationship and be independent. And I’m like, Nope, that’s not a real cost. That’s a fear cost. That’s the future.
Meg:
I see why you and Dr. Mel Houser are friends because you had all these great sayings, too, like ‘upstairs brain’, ‘downstairs brain’; ‘real cost’, ‘fear cost’; ‘brain rules’ versus ‘world rules’.
Casey:
Oh, yeah.
Meg:
Yeah, that’s what it was. Okay, so the fear cost is the parents’ fear about how that’s going to impact a child. And this is really us being steeped in behaviorism, right, because we’re still unlearning this in so many ways when really, when we’re modelling flexibility with our kids, we’re creating more flexible children. When we’re twisting their arms and saying, “You have to apologize”, “You have to do this, you have to do that,” we are not helping shape them into the kinds of authentic caring kids we hope they are. So, often, it sounds like we’re coming from this place of fear. So, fear cost is ‘I’m scared of this outcome, but I have no evidence that that will be the outcome’, right? Okay.
Casey:
Yeah. So, it’s like, thinking about, like, let’s think about a table where it’s a dinner table, and we all want — all of us want connection and we want joy. And a lot of people associate a family dinner with a potential for that, right. But this is an example from my current cohort, actually, that I’m running. And I don’t have the outcome yet, because we’re still in it. But, you know, there’s a lot of equalizing going on at the table. It’s difficult for the sibling. And there’s not a lot of eating happening, necessarily. And so, the real situation is that there’s a lot of activation around the expectations that happen in a typical setting for dinner. And so, the real cost of keeping the child at the dinner table is like, we’re not eating, we’re not connecting, the child’s activating. And it’s actually making it harder to get food in and communicate. But we have to separate that from the fear cost of allowing the child to watch an iPad and sit where they want and eat how they want. By realizing that like, the fear is like they’ll never eat, and they’ll never connect with us. But that’s not actually true. Like, it might facilitate more connection and more eating to drop the demand, if we want to go to the demand of sitting at the table.
So, or like, if I deescalate, like I described at the indoor playscape with the football where my son said, “Move,” parents are like, “But if I do that, then they’ll turn into a bad person, or they’ll become abusive.” And I’m like, that’s not true. Like, that’s the fear. But the benefit of me doing that is like, I’m strengthening a neural pathway into his thinking brain and signaling over and over and over again ‘I will always accommodate you’ and establishing trust, which is where all the magic happens. So, like, the benefit is so much higher than the real cost of like, I have to manage my own anxiety around parents judging me, these women at the table, and they didn’t. And my own 0 to 100 catastrophizing about like, “Well, if I do this, then X-Y-Z and one thousand is going to happen.” So, yeah, we work through that model. And then, we put it, we situate it within the family system. And then, we start implementing and experimenting with different actual day-to-day accommodations. And I usually start with connection and communication with parents. And actually, we just did a $25 therapy masterclass for PDA, where we taught some of the same strategies, I did it with an OT. But you know, one of the very first most easy things that anybody can do is just stop talking so much. Stop asking questions like when the kid wakes up in the morning, or you pick them up from school. Just like, wait until they talk. And the same thing is true for the beginning of a therapy session. Because direct questions can activate the threat response because they haven’t consented to it, right.
And there are nine principal accommodations that I talk about. I’m happy to go through them, but that’s a little overkill. But one example of a woman three or four weeks into the program starting to apply these accommodations was that she actually shared a video with our online community of her son coming over and sitting next to her and holding her hand while watching a video for the first time in like, a year and a half. So, it’s kind of like that first moment with my son with the cheek. And we look for those as data. That’s our data, right, those moments of connection. And then, you know, a family with teenagers that one of the teens was in burnout. You know, three or four months after we worked together, the teen started sleeping and being able to leave the parents’ bed, like voluntarily wanted to go back to his bedroom. So, that’s like a basic need that was impacted, because theirs was sleep. You know, often you see eating more, toileting improves, but a dramatic example is a family who I worked with and it was a tween, and I’m going to call it Jessica, but that was an internalized expression. And the parents weren’t aware that the second child was also PDA because they had one that was more externalized.
And so, it was a really, really difficult situation. They had to move completely into unschooling and enlist other family members to help. But the internalized PDA girl, when we work together, if they left the house would threaten suicide, even after coming — being away for like, an hour. And she, the mom just e-mailed me that they went away for the weekend and that it went great and the kids had a good time. And you know, just how much more regulated and safe in their body the children are, and actually have two different sort of paths they’re going down. We were talking about, like, maybe one on schools, and one potentially goes back to a school setting because they’re more extroverted. But it’s a long game, right? Like, you’re not going to see these big dramatic transformations in a couple of weeks. But you can see the moments; you can see the openings.
Meg:
This is really quite different from how we’re trained as therapists to support families. I’m thinking back to being a new grad OT working in early intervention and kind of trying to give everybody a Velcro picture schedule, you know. I had no idea how to support families with their daily routines. And it’s not the same for every kid. It’s not the same for every autistic kid. But it is really helpful to be able to identify that this is a child who has a PDA profile, and these are the ways that we can support this child in this family. And I think we need this. Therapists, families need us to be able to support them in helping their child feel safe. That’s what I feel like the big theme here is — safety. Is that on target in your experience that safety is sort of the foundation for everything?
Casey:
Yeah. I think, unfortunately, for PDA children, their baseline is one of not feeling safe. And it’s, you know, it’s like even — it’s we have to go even deeper than like, emotional support, right. It’s like, we actually have to accommodate so that their brain isn’t constantly going into fight/flight mode. And that means doing things really differently. And it can be hard to make those shifts, because a lot of times it’s going on physiologically inside and building. And you’re not going to see it in the moment. And that’s especially true when we see a child masking at school or even in a therapy setting, but the parents are reporting like, you know, “They’re totally different at home, they’re explosive or shut down.” So, yeah, it’s like prioritizing the choice points of like, even if I can’t see it, I know that this is how the child’s brain works. And I’m going to overcome my own resistance, and anxiety, and conditioning to support them. And let go of my own ego, because I’ve had to do a lot of that, of just like, I don’t care what other people think of me, you know?
Meg:
I know people are just chomping at the bit to hear your other ways that you support families and the other strategies and accommodations. So, want to circle back in just a minute to the resources you have online and remind people that we have a couple of other episodes on PDA. And then, the piece about reducing demands with Amanda Diekman was Episode 60 that folks can circle back to. Before we get to your resources that you have online, I want to ask you for sort of a final takeaway, if folks listening have one big idea that they take with them or one big takeaway from this conversation, what do you hope that would be?
Casey:
Oh, that’s a hard one. Is it okay, if I get a little philosophical?
Meg:
Please.
Casey:
Okay. So, you know, I think it’s even deeper than our professional training or our conditioning. It’s like, our whole society, so many aspects of it are premised on the idea that like, at our core, we’re not good and we need to be controlled and contained as humans in order to be good. And so, you know, you asked me at the beginning how I’ve changed. So, I’ve become a practicing Buddhist through this, you know. Partially to learn how to sit with the discomfort of thoughts and emotions in my own body without reacting. But also, because of the premise — which I know Dr. Ross Greene shares — of like, can we just operate on the premise always that our child is good and that we don’t have to restrict and contain them in order for that to be true. Like, can we see what’s behind the threat response and trust that, because that’s also where parents get stuck. And sometimes, I’m sure therapists have like, “But if I take the reins off, they won’t be a good person.” And so, we have to start with the premise of like, there’s an inner goodness that all of us have that can’t be corrupted. And, you know, if you can’t access that belief sometimes, it can be hard to take the reins off.
Meg:
I love this. Because what you’re doing there, too, is disrupting this habit that we have of cultivating shame in children, by teaching them that they’re bad, that their needs are bad. If we don’t control them, they will be bad. And instead, bringing us back to that positive self-identity, positive sense of self, sense of inherent goodness. I love that. Thank you so much. All right, tell us what you’re working on now, what you have to offer, where we can find you online.
Casey:
Sure. Okay. So, I have my fifth cohort of the Paradigm Shift program coming up. That’s starting April 5th, and that is a three-month program and community to support parents in making the paradigm shift, which is why it’s named that. That’s like my signature program. But I have a lot of $25 masterclasses that are an easier investment for some people. I’m working on a book and a research study that I hope to share with the world in the next year. But I’ve been focused on building my business so it can be financially sustainable for me to keep working in this field. Because I had to make a decision of am I going to go back to my old life, you know, now that our family is stable or keep on keeping on? So, I’m hoping to go back to the book. I have about half of it written. But it’s gonna be like as if we were sitting down to have coffee, and I’m just explaining everything you need to know as a parent for, you know, making the shifts in your family or a therapist.
Meg:
Yeah. Yeah, we need a therapist book for sure, Casey, in your free time. Just a textbook, if you don’t mind. Get it into the graduate school curriculums.
Casey:
Well, I want it to be like really accessible and fun and down to earth, and not how I’m trained to write as an academic, because it’s pretty dry.
Meg:
Thank you so much, Casey. I’ll link to all of your work in the show notes. And I appreciate your time today. I know I learned so much from this conversation.
Casey:
Yeah, thanks so much for having me.
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Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
