Meg:
This episode is all about PDA, pathological demand avoidance, rebranded by Tomlin Wilding as the pervasive drive for autonomy. You'll hear my interview with the wonderful folks at PDA North America. They recently completed a huge survey with over 2,000 responses and got such rich and interesting data on PDA from the respondents.

And in this episode, they go over the implications of what they learned for providers. We talk about the things that are supportive for PDA folks like respect, partnership, flexibility, authenticity, congruency. We also address in depth that question that so many of us get when we are accommodating our Autistic clients: "What about the real world?" 

If you support PDA-ers, after you listen to this conversation, make sure to also check out our Patreon where we have providers talking in-depth about how they support PDA-ers in the context of everyday SLP, OT, mental health practice. They go into how to move through rupture and repair when they get it wrong, some of our guests talk about how to support PDA-ers in burnout, how to bring autonomy into everything including regulation, and more. It's just $7 for over 30-hours of content and you can find it at patreon.com/learnplaythrive. Your support on Patreon helps us cover the cost of this podcast and keep it going.

Also, don't forget to check out our upcoming in-person and live-streamed continuing education trainings including our fall training in Minneapolis, Minnesota at learnplaythrive.com/trainings. Here is the interview with the wonderful folks at PDA North America. 

Hi, Diane, Ruth, and Michelle. Welcome to the podcast. 

Diane:
Thank you for having us. 

Meg:
Yeah, I'm so excited to talk with y'all. We've existed in overlapping spheres for a long time and I love your work, and I want to start by asking you about yourselves. Can you each tell us a little bit about who you are? And also, share with us how PDA North America started and what the work y'all are doing is. 

Diane:
Should I start? Introducing myself is like the hardest part. I'm a clinical social worker outside of Chicago. 

Meg:
And you're Diane.

Diane:
I'm Diane, yes. And I've been working with Autistic individuals and their families, and schools, and agencies for over 40 years. And now I'm the founder and executive director of PDA North America. And maybe everybody else can introduce themselves and then I'll go back to kind of the origin story.

Ruth:
 Sure. Yeah. I'm Ruth Hevelone. I am a late-diagnosed ADHD PDA-er, very internalized. And I'm the mom of twin PDA boys that are PDA Autistic and one's very externalized, one's very internalized. So, I have both worlds there. And I'm also married to a PDA man. And my background is really in small business management and marketing. And then, I had these wonderful twins and my whole world kind of exploded and ended up not going back to work.

And then, a few years later, discovered PDA profile and then discovered PDA North America and immediately ran to the conference and said, "Diane, how can I help? I want to be a part of this." And so, that was about three-and-a-half years ago. And here I am today. Now, I was, I think, the first hired full-time employee of PDA North America. So, it's been a journey and one of the best.

Meg:
 What a story, Ruth. I'm sure we'll get into this later. But for folks who are already wondering, can you give the short explanation of what you mean when you say one internalized, one externalized?

Ruth: 
Oh, yeah, absolutely. So, being externalized, basically, it's the internal experience of PDA, I think, is similar whether you're externalized or internalized. But what you see from the outside, the internalized PDA-er is going to be a lot more high masking. They're going to be the one that's fawning more. They are going to be the one that performs really well in school and the teachers think they're the perfect student.

But then, at home, they might blow up and explode. And, you know, the parents are like, "What is happening?", versus the externalizer doesn't really have the ability to mask very much. And pretty much everything that you see is what you get. So, you're going to see a lot more bigger meltdowns. You're going to see maybe some physical aggression, verbal aggression. That is kind of their stress response instead of that more higher masking ability.

Meg:
Thank you. What about you, Michelle? 

Michelle:
Hi, I'm Michelle. So, I am actually one of the volunteer research leads at PDA North America and one of the co-authors of the recent PDA Experience Report with my colleague, Melissa McKenzie. And so, my background is in health communication. So, I support a lot of companies and non-profits in raising awareness for certain conditions. And as part of that, I've done a lot of research and survey instruments. So, I have a PDA child as well. And I was looking for ways to bring my background to this space so that we could kind of build more of the evidence base for PDA.

Meg:
Thank you so much. What a team. All right. As we start diving into your content, I want to acknowledge that there's so many different definitions of PDA floating around and so many really interesting and deep conversations happening around it. And we won't get too into the weeds of the debate around PDA, and its source, and its origin, and what it is. But just for all knowing what we're talking about here, can you share the working definition of PDA that y'all use?

Ruth:
Yeah, absolutely. This is Ruth speaking. So, that earlier thinking was really that it was an Autistic profile. It was kind of first identified in the 80s, but later research is kind of showing it's more linked to autism and ADHD. But we really view it as a neurotype that is a nervous system disability where individuals have high anxiety, and this fundamental need for control in order to really feel safe in their nervous systems. So, we really see it as a stress response. The body perceives demands as threat, and that triggers their fight, flight, and freeze, fawn.

And then, really recognizing that when we say demands, like, demands are everywhere. Demands are cumulative. They can cause stress everywhere. So, eating can be a demand on your internal system. Putting your coat on is a demand. Basically, I think a lot of people don't realize when we talk about demands that they are everywhere all the time and that PDA people really have intensely fluctuating capacity. So, this ability to do something one day but no ability to do it the next day, just based on kind of their stress levels and that cumulative fluctuating capacity from that cumulative stress.

Meg:
Thank you. And I realize we didn't circle back around to talking about the work that PDA North America does. So, Diane, is there anything you want to add to that definition? And also, can you share with us about the work y'all are doing? 

Diane:
Sure. You know, maybe I'll start a tiny bit with kind of how we started, too. So, as I had said earlier, I support lots of families with an Autistic family member. And like so many things that have happened in the disability space, there was a mom who kept sending me articles about PDA saying, "You have to pay attention to this." And as a social worker, a problem solver, I'm like, all right, if there's a need, like, I'll figure out how to address it.

And I held the first conference in Chicago, March 2020. Not great timing because of the pandemic, but it turned out to be an amazing event. And now, we just had our seventh annual conference and it's grown and grown. And we became a non-profit a couple of years into PDA organization being formed and became PDA North America. I just did it out of my private practice for a while. 

And now, we do so much, but, you know, I hadn't really realized it would be life-changing for so many families when we were starting out. And the power of that community and the power of being understood and seen has been so important. One of the things, I think, that is critical to understand about PDA — and then I'll let Ruth talk more about the organization — but what's critical is so many PDA-ers have been misdiagnosed or undiagnosed over their lives. And so many parents have been judged and blamed for their child's behavior, and been giving the opposite advice than they needed.

So, we have a community with lots of trauma, lots of pain from being misjudged. And it's kind of the power of being seen that we're so proud of as an organization. But Ruth can say a little bit more about what we do. 

Ruth:
Sure. Yeah. Yeah. So, one big distinct thing is that we don't provide direct services for people, but we provide resources, supports to anyone that's looking for any kind of support for PDA. So, we host weekly webinars. That is kind of one of our fundraising tools, but on different topics, whether it's, you know, how to do OT with PDA-ers, declarative language with PDA-ers, et cetera. Basically any topic you can think of. And then, we have professional trainings and trainings for teachers and educators.

Educators — I'm sure Michelle will talk about this in a little bit — but education is one of the hardest, absolute hardest things for PDA-ers, the education system specifically. And then, we have trainings for parents. We have like almost 40, I think, support groups now that are free peer support groups, always looking to expand that. We have different resources on our website. One of our top visited resources is our PDA-affirming provider directory. So many medical professionals don't understand what PDA is or how to support it. So, parents are going to them and are just, you know, told be a better parent essentially.

And so, that PDA-affirming provider list, if you are a provider listening to this and you have a keen understanding of PDA, we would love to add you to that. There is a free form that you can just fill out and you will be added to the PDA-affirming provider list. And we even have directories of PDA life hacks, like what has worked for people and people can submit something. It's under topics, whether it's executive functioning, travel, et cetera. So, we're always, you know, looking to expand our resources and our offerings. And we are all the time.

And then, we have our big annual conference that just happened in March. It was our seventh annual conference. And that's a big two-to-three-day event that happens in-person and virtually. And it's for PDA-ers, for professionals, for families. Yeah, it's incredible, and how I came to PDA North America.

Diane:
We also — this is Diane — have a new therapist training for mental health clinicians, too, that we're excited about, and blogs. And one thing I want to point out, too, is that for any of our virtual offerings, no one is turned down because of inability to pay or no questions asked. We invite everyone to be part of our community, too.

We're always adding new services. I forgot to mention in my introduction that I was diagnosed as Autistic at age 65. And the thing I like best about being Autistic and working with other neurodivergent people is we're pretty obsessive. So, we always add new programs and offerings at PDA North America, even when we shouldn't. 

Meg:
Thank you. Thank you so much. Yeah, I have the privilege of interviewing so many Autistic people and learning about the deep dive, like rich, additive projects and research, and things people are exploring, and understanding, and offering to the world. Speaking of really big projects, you all recently completed a huge survey on the lived experiences of PDA-ers and their families. Can you talk about your survey and what you learned from it?

Michelle:
Sure. So, this is Michelle. So, in 2018, the UK Society had done a similar survey. And so, we hadn't seen anything that was of that scale in North America. And we really wanted to put together what the experience looks like here beyond just anecdotes and see if we could really get some consensus. And so, we did a survey that was only open for a month, and we got over 2,000 responses. It was actually three separate surveys. One was for caregivers of PDA children under 18; one was caregivers of PDA adults; and then, one was PDA individuals themselves. 

So, they had similar questions across the surveys, but of course, they were tailored for the different life contexts and ages of the people we were asking about. And we tried to get a very broad overview. So, we covered so many topics. We covered the main characteristics of PDA, stress responses like Ruth was talking about in terms of internalized and externalized education, documentation of PDA, the evaluation experience, co-occurring conditions, and then experience with treatment and provider interactions. So, again, really covered a lot of things. And the report is 50-pages. So, we do have a summary as well on the website. 

Meg:
Thank you. I'm going to link to your provider directory, and your report summary, and all of those things. What are some of the things that were the most salient that you found in your survey? 

Michelle:
Yeah, I think there were a lot of key learnings. I'll touch on a few. And then, if we want to ask about any of them, we can. But I think one of the biggest things was just seeing the consistency of the characteristics across the different surveys. So, again, when we define PDA, I think we all know kind of the main characteristics. But to see that, for example, in the caregiver survey of the under 18, like 25 of the traits we asked about were endorsed by more than 75% of respondents. And only four traits fell below 50%.

And the top traits were kind of also consistent across the samples. So, strong resistance to being told what to do, resistance to tasks perceived as undesirable. Those were among the most selected. I will say the experience for the adult respondents looked slightly different. And I think that that's also interesting because as a caregiver, I can never 100% accurately identify what my son is feeling, right.

And so, that was interesting because they were reporting heightened sensitivity to sensory input, for example, and hiding or masking their true feelings in social situations as very frequent experiences. So, I think that was one thing is just seeing the patterns. Again, as Diane said, I think a lot of parents have been blamed and shamed. And there's no way that these patterns exist just from over 2,000 bad parents, right. Like, you wouldn't see this sort of consistency.

I think I'll just mention one other thing, but the co-occurring conditions was really interesting. I mean, the prevalence and the amount of co-occurring conditions people reported, I think it really just speaks to the fact that any therapies or care or education has to be so individualized. There is no one-size-fits-all because the context and the other conditions that that person might have will influence all of those outcomes.

Ruth:
 Yeah. There's one other key takeaway I would love to talk about, too. And that was just the education piece. I think our finding was that 88% of parents that had children under 18 reported that their child struggled to attend school because of that stress of all those demands. And that is a high, high number. Yeah. Diane, I think you had something to say about as well.

Diane:
Yeah. We had been before the survey borrowing the UK statistic, which was about 70% of PDA children didn't attend school regularly. And we thought, oh, that's so horrible. And then, when we did our own and it was even a worse situation. Also, what struck me is that even kids who do have a 504 IEP, which are hard to get for PDA kids, it didn't really make things that much better. So, we're highly focused on making the school experience better for children and trying to work with schools because that's such a quality of life issue.

And we do have lots of parents in our community who were reported for truancy violations because of their child's inability to attend school. So, there's so much work to be done. Another thing about the characteristics, including co-occurring conditions, is that one of the benefits I feel of understanding PDA is that it just helps you to understand neurodivergence more accurately and more broadly, where so many people have been taught just a more stereotypical presentation, especially of autism.

And the PDA movement was so ahead of the curve even decades ago, like, kind of saying, yeah, there's not really gender differences, and just presented such a more nuanced presentation with many co-occurring conditions. So, I think it benefits all of us to learn about PDA if we're interested in neurodivergence. 

Meg:
Yeah. And starting with lived experiences, right? Rather than starting with some neurotypical psychologist's presumption of what is happening for their client with whom they don't share the neurotype. Like, we've gone wrong that way so many times. I love that y'all started with lived experience.

And I appreciate you highlighting the school issue because, you know, we know in the US in 2026, families with two parents working full-time cannot afford their rent or mortgage, and food, and all the things. I don't know how you are supposed to stay home with your child so that they can be okay, so that they can survive and also not wind up unhoused at this point for so many families. It's a huge, huge equity issue. Like, you're faced with two bad choices. 

Diane:
And it's also difficult in that so many PDA children, because many are very socially interested, want to attend school and love to learn. So, you know, it's a really hard balance for PDA-ers who really want to be able to attend school, but the schools don't work for them. Besides the whole homeschooling issue not being available to everyone, and every state has such different homeschooling laws, that there's so much inequity across the board, as you said, in the whole PDA experience. It's really a crisis. 

Meg:
It is. Yeah. And I also want to name that our Black and Brown PDA-ers are so much more likely than their white peers to get handcuffed, arrested, treated criminally for things that happen in schools. There's just really so much on the line. 

Diane:
Absolutely. And that population, to have their neurodivergence even considered versus just being classified as conduct disorder or oppositional defiant disorder is a huge problem. 

Meg:
Absolutely. Yeah. And there's so much data to support that. I often tell the story or reflect on the story of when I was an OT in the schools and there was a Black second grader who was clearly Autistic, but not identified as Autistic, identified as emotional disturbance or something. And he wouldn't change classes. He just sat there and they would get the armed police officer to pick him up and carry him to the next class. And I almost lost my job over this. I was like, you know, because there's restraint rules on teachers and staff and they just used an armed cop. And that's a real, real documented slippery slope in the schools. 

I could talk about this for the whole time with y'all and it's worthy of it, and I appreciate how your work highlights that as well. I'm going to get into some of the details. What are some of the questions y'all get from providers and families about how to support PDA-ers? What are the themes that come up the most? And what are some of the answers that you like to share? 

Diane:
Should I start? This is Diane. I think, you know, my mind always goes to like the hard questions that were asked so often. And probably the biggest one is if you have a low pressure, low demand lifestyle for your child, how will they ever be able to kind of meet the demands of adulthood or, quote unquote, 'the real world'?

That is one of, I think, the hard questions kind of related to that is — and then we can answer these questions for you — is, you know, without rewards and consequences, because we know that that does not work for PDA-ers and makes things worse, but the question comes, "Without rewards and consequences, how will our child or the child learn right from wrong?" Those are probably my least favorite questions, but I understand they're necessary.

Meg:
Which is an interesting question for a group where many of the kids have a very strong moral compass and sense of values and right and wrong. And so, it's like the question isn't quite, "How can we teach them right or wrong?" It's more, "How can we teach them what will happen in context if they don't comply in the, quote unquote, 'real world'?"

And I'm just going to say, I think so often we're missing those children's self-advocacy. Thinking about my own kid at soccer practice last night towards the end of practice was told to run a lap because he didn't listen to an instruction and he said, "No." And afterwards we realized he was very, very hungry. And that, "No," was probably what stood in between him and full, hangry meltdown. And you say, "Oh, that 'No' is defiant. You shouldn't say 'No' to the coach when they tell you to run a lap." You have the hangry meltdown. You say, "Oh, listen, instead of getting this far, you should stop running and stop and have a snack," right?

But when they try to advocate, like, "No, I cannot go to school today. If I go to school today, I'm going to tip past 'maybe okay' into 'not okay'", and we override them over and over and then we're like, "How are they going to function in the world?" I could soapbox on this, but let me pass it back to you. How do you — what do you like to share when people ask that question? 

Diane:
But it is that we're a compliance-based culture and, you know, this is more your arena than mine, but thank goodness your child recognized they were hungry, right? Because we have so many kids who wouldn't even know they were. 

Meg:
No, he didn't. I don't think he knew he was hungry, but he knew that he was a 'No' on running the lap.

Diane:
Yes, right, right. But we sometimes — and we'll talk about therapy, I'm sure — but we sometimes skip and want kids to self-advocate at some point in their life when they turn 14, not when they're young, but they have no idea what they need, right? They just know they can't and they need to say 'No', but that's a whole, a whole area we have to address, too. Ruth, I think you were going to say something, too.

Ruth:
 Yeah, I was just emphasizing that, like, the 'No' is not willful defiance. The 'No' is a stress response and it's like a complete mindset shift. And I think anybody that is working with or educating, whatever, you know, living with a PDA child, they have to do that mindset shift, which just feels so, it feels so radical, right? It's completely different than anything you've ever known, but really understanding that it's not willful defiance, that it is this stress response because somehow, somewhere they're perceiving a threat and it's shutting them down in some way. And I think that's what's so hard for schools, too. I mean, they just look at all of it as just defiance and let's put a consequence on it to, you know, to teach them.

Diane:
Right. And kind of with the first question too, about preparing people for the future, preparing kids for the future, I don't think people appreciate how many hurdles there are for a PDA child to jump through. Like, before a child walks in the door to school, they've had so many demands, so many unpleasant sensory experiences, so much stress and pressure that we're not avoiding demands for kids. There's no way to avoid demands. There's so many; they're everywhere. And also, just the bigger issue of when humans feel okay, when they feel safe, when they feel that their needs can be met, the prognosis for happy life and mental health is so much better than being forced to deal with things they can't cope with. We get it so wrong. 

Meg:
I think it's so interesting that we have this idea as adults, that the way to teach children to be compassionate, value-centered people is to deny them their needs. And what we see is the opposite, right? Like, I look at my own kids. I shared a story recently on social media where one of my kids is fairly sensitive to some sensory input, and I've just been accommodating that his whole life. But I kind of am, too. And he was learning a coin, like, to roll a coin on his fingers. And every time the coin fell, it just like shattered my nervous system.

And I was kind of sitting there with my fingers over my ears. And he ran to his sister's room, and he got a tiny hair tie, and he wrapped it around the edge of the coin. And he was like, "Mom, I noticed you covering your ears. Now when the coin drops, it won't make a sound, and that might feel better for you." And I was thinking, like, that's what kids do when they get accommodated. They model that back. And this idea that if we're kind and compassionate and caring about kids' deepest needs, they will become, like, some sort of self-involved antisocial humans isn't right.

And one thing that y'all brought up when you were talking about the survey is Autistic adults reported sensory overwhelm as a core component. I was looking today at what some of the newer research and lived experience on just the Autistic neurotype in general is. And so many Autistic traits are explained by sensory differences, central coherence, which is seeing the details before the big picture, and monotropism, being strongly focused. And when you can see those components, it's really, really different than, you know, because of the double empathy problem, being like, "Behavior, defiance, kids gonna fail at life!" as opposed to, there's a kid in sensory overwhelm who's in monotropic focus about something, whose anxiety is very high, because they don't know what to predict next. Like, we can access our own compassion when we understand these kids better, right? 

Diane:
Yeah, that's the hope. 

Meg:
Yeah. Okay, so give us a little bit of a before-and-after of what it can look like as a professional to support a PDA-er without an understanding of PDA, and what it looks like if we try to support a PDA person with a lens for what their lived experience might be like. 

Diane:
Well, I can start. There's so much embedded in that question. So, one thing to say is that our model of kind of expert and patient, right, doesn't work so well for this population. What works is a collaborative partnership based on trust. And nothing can happen without that. So, I think professionals need to both learn about that, but also be able to do that. And not everyone can, because it's a different mindset than so many professionals were taught. You know, professionals can be taught to come in with an agenda, to control the session, to have a plan, to be prepared, and talk about faulty thinking and consequences and solutions, rather than just be attuned and responsive to what's happening in the moment.

I think so much of professional training gets in the way. And I think one of my hopes for therapeutic relationships, regardless of kind of the discipline, is that we can partner in self-understanding with our PDA clients, whether they're 4 or 40. Because I think self-understanding is the key. Like, what do you need in life? And we don't have that information. And usually, there's a process of learning that for an individual. So, I think it's the partnership. 

And, you know, respect is so critical. And flexibility, because PDA clients can't always come. They can't always come to their sessions. They don't have that ability. So, there needs to be flexibility; and flexibility in all areas for the client. So, it feels different, but it has to be respectful. And professionals need to understand that decreasing characteristics of, you know, Autistic or PDA characteristics cannot be part of anyone's agenda. We're not trying to make people less PDA. And not all professionals know that, too. 

One of the strengths of many PDA individuals is that they have a really good radar to know who's safe and who's not, who gets them and who doesn't. So, often, a PDAer won't go to sessions with someone who can't feel safe for them, doesn't feel safe for them. So, we need to listen and respect that, and not feel that they're being resistant, and not blame the parent for not forcing their child into treatment. Also, recognizing that a child might not have the capacity, especially if they're going to school, to be able to access any kind of therapy or partnership, that they might have used all their spoons.

Meg:
The provider not feeling safe for them might be something as basic as the lack of congruency between how the provider is feeling in their own nervous system and how they are communicating with the child, right? Like, they can tell. Many PDA-ers can tell if you are faking your regulation, if you are faking that you like them when really, you're not sure that you like them, if you're faking that you're having a good time or that you want to be there; they can tell. And a lot of us as providers haven't yet learned the skill to attune to ourselves so that we can show up in a really authentic and congruent way for these kids who can read our nervous systems, right?

Michelle:
That's really important for school, too. I know you had an episode, the shamed and trapped one, but I often think about that, too, because I think teachers whose nervous systems get dysregulated by the PDA student, the PDA student can tell that they don't like the student, that they think of them as a nuisance, and then it creates this really vicious cycle where the child can't learn. And those, you know, behaviors end up increasing.

Ruth:
Yeah, I was just going to say that one of my biggest things — and you kind of spoke to it, Meg — was just like authenticity and integrity. And if those two things are not in alignment with your client, like if you're, I think, even telling a client, "Hey, I'm feeling a little uncomfortable because I'm not quite sure how you're feeling, I'm not quite sure what you're thinking about this, is there something that would make this easier for you?" Just being vulnerable with PDA-ers, like if you show them vulnerability, and I know that that's something that probably a lot of therapists weren't taught to do.

I was actually on the phone with a therapist yesterday that she's come to — she was late-diagnosed, and she's now PDA, now realizes her own PDA and now only serves a PDA population. And she said the biggest thing that has really helped her is doing so much perspective taking with the clients and telling her story a little bit. And it's something as a therapist she was taught to never do, you know, like, you keep, you know, anonymous, your life experience, you're really just there to hear theirs. And that one-sided talking does not work well for PDA-ers. 

You really need to, you know, understand them, take their perspective. If they're having a hard time, don't push them; back off, understand why they're having a hard time, talk about how a time that was similar that you had a hard time. And that is how you're going to really gain that trust and understanding with a PDA person, because that trust piece is so paramount.

Meg:
Yeah, and authentically and genuinely engaging in something with them that's joyful to them, real shared interest in the things they love. I think experiencing joy together and delighting in that person and the thing they love builds so much safety, too. I think the folks who probably have the hardest time with this is newer practitioners. And Diane, you said we are trained out of our instincts and we're trained into all of these unhelpful practices, especially for PDA-ers. Like, we come in, or I came in as a new provider having previously loved being around kids and feeling like I was great with kids, but I came in with this imposter syndrome and this stress of proving myself in the medical model, "I can write a goal and make the kid meet the goal," and I need to move fast, and I need to do all the things, and I need to document progress. And really, it's really, really easy to lose the grounding of attunement and connection and emotional presence.

And so, when I was thinking, Ruth, as you said that, like, disclosure can be helpful, boundary disclosure, right. For that new provider, we don't want them coming in and being like, "I'm just really new at this and feeling like I don't know what I'm doing, and I'm kind of scared you're going to yell at me," and, you know, like, that is that person's work they have to do before they can show up in a space with this child. The type of self-disclosure is something like, "I showed up late to our session, right. Like, I missed, I misread my calendar and I was five minutes late, and I don't know why, but being late is the kind of thing that just makes me so stressed. So, I'm still like, 'Oh, I'm still arriving,' I'm trying to get that voice in my head to stop telling me that it's so bad to be late," like, just something where you're actually grounded before you're sharing it with your client. You are not emotionally dumping on your client, right? 

Diane:
It all has to be for the benefit of the client.

Meg:
Right. You're modeling, modeling self-compassion, modeling self-awareness, you are not trying to get them to regulate you, I think that's a good reframe. 

Ruth:
Yeah. And even like, you know, my now realizing my own PDA, I did years and years of CBT therapy, all these different kinds of therapies, and I always would quit because I didn't feel like I could ever connect with a therapist. And I think it's because that vulnerability and that authenticity wasn't there, that kind of back-and-forth, and even you just saying that right now, just giving this like small little example, like, I was just trying to picture myself in that setting, and like I immediately felt like, ah, like that sense of safety was there because you were able to be vulnerable and share how you're feeling about something. And like, yeah, I think that that is such a great point, and something that's so often missing for PDA-ers in a therapeutic setting.

Diane:
Yeah, and I think most therapies and kind of business as usual — this is Diane talking — need to be modified for PDA-ers, like, you know, full stop. Because even some of the things that some of us do naturally, like praise or being too enthusiastic with young children can backfire with PDA children. Or asking too much of kids, you know, especially like, "So during the week between our sessions, will you write, you know, write down some feeling words?" or those kind of things, that is too much for most PDA-ers. 

And when we make mistakes, I think, as parents or professionals, I think how it's interpreted for most PDA-ers is, "You don't understand me. If you understand me, you wouldn't be asking me to do that. So, how can I trust you, because you don't understand me?" And we have to really understand PDA if we're going to work with this population. And I'm one to often say to therapists and teachers, which probably isn't always so nice, like, "If you don't want to work with this population, great. Don't. I don't want you to." But we have in clinics and agencies and schools, we have this very strange mindset that everybody should be able to work with every kid, but that's not true at all. Some people are much better fits based on so many things. And I think we're just better as a society to admit that. 

Meg:
I agree with that, yeah, as an OT, that creates an immense amount of stress, just the scope of what we're supposed to know about and frankly don't, especially as new providers. We've, in our Patreon series, where we're like sharing provider stories of how exactly they do their work, there's been a pretty heavy emphasis on PDA. And one of the things that comes up a lot is rupture and repair, just authentically noticing like, "Hey, when I did this, when I changed this, when I said this that way, when I asked you that question, whatever it was, that was really distressing for you. I got that wrong. I'm sorry." Like, being able to authentically move through rupture and repair and accept that as part of the process of connecting with somebody, that comes up a lot as a tool for being a safe person for our PDA clients.

Ruth:
Yeah, yeah, I think that's great too, and I think it's also for the therapist to note that a lot of PDA kids are not going to verbally respond to repair work, but they feel it, and they take it in. Like, my kids don't respond — well, my externalizer does not ever verbally look at me, nothing, no kind of response to any kind of repair work, but it goes a long way ultimately in the end. And he gets it, he receives it, but he just can't, he literally can't handle it. My internalizer can a little bit, but that's not to say that I should stop doing it, because I think it does definitely have an impact.

Meg:
Yeah, like you said, that they feel it. They feel it if you feel it. If you're apologizing because you're scared, "Oh, sorry, sorry, sorry, we don't have to do that way, sorry," they can feel your fear. If you're authentically like, "Oh, I messed that up, that didn't feel good for you," they can feel what you are putting out there.

Ruth:
Yeah.

Meg:
Anything that we missed or anything that y'all want to bring us back to from the conversation? 

Michelle:
Well, I think just in the survey, just talking about therapies, we saw that really the majority of people had not experienced affirming or supportive care from providers. That was a huge issue, I think it was under 3% across the samples say they always receive affirming care. And in fact, like we talked about, the majority of it is actually unhelpful and not affirming. And I think we looked at different therapies that people have done, and it was a real mixed bag. 

I mean, there were some things that were rated as more unhelpful than helpful, but a lot of them were very mixed. And I think the reason for that is because the individual therapist or provider, like we were just saying, matters almost more than the exact type of therapy or the discipline. So, I think, just as Diane said, knowing about PDA and trying to understand your clients and coming at it in like a collaborative and child-led way matters more than what your exact background is in.

Diane:
Yeah, absolutely. And we usually do — maybe Meg, you'll be happy to hear — we usually do tell families, start with OT, that that's more accessible to most PDA-ers, and that, you know, interoception and helping PDA-ers understand their inner world is critical to anything that's going to happen later. And I think many OTs are, I don't know, not as compliance-based as some other professions. 

Michelle:
Yeah, occupational therapy was actually one of the therapies that was rated as most helpful, especially for children under 18, but also the caregivers reported very positively on OT. 

Meg
I love to hear that. I think there's been a real shift since I was trained, like, finished OT school in 2013. But a lot of the folks in the Learn Play Thrive community, they're like, "I'm the lead OT at this college," and, you know, we have a lot of folks who are in leadership positions in OT education who are very deeply interested in learning from the lived experiences of Autistic people, and I know y'all are listening, and what you're doing really matters, so I love to hear that. Where can we find your work online? I'll link to everything in the show notes, but in case people don't make it there, let's just say it out loud, where do we find you?

Ruth:
Yeah, sure, you can find us on our website, which is pdanorthamerica.org, and then we also have the PDA Learning Lab, which is just learn.pda.org, and that is where we have housed 60-plus pre-recorded webinars, we have our trainings there, that's where our PDA research report lives, as well as a ton of free downloads. And then, we're on Facebook and Instagram, it's just @PDANorthAmerica.

Meg:
Thank you so much, thank you for your work and for your time today in this interview. 

Diane:
Thank you for having us.

[Ending note]
Thanks for listening to the Born to Be Free podcast from Learn Play Thrive Continuing Education. If you enjoyed the episode, please rate our show on your podcast player and share the episode on social media. For more in-depth episodes, visit patreon.com/learnplaythrive.