Navigating PDA: Demand Avoidance, Autism & Neurodiversity, with Diane Gould | EDB 331

 

 

 

 

PDA expert and autism self-advocate Diane Gould, LCSW discusses Demand Avoidance.

Diane is a Licensed Clinical Social Worker that specializes in serving autistic individuals. As the Executive Director and Founder of PDA North America, she founded the annual PDA North America conference held in Chicago that has changed the lives of hundreds of PDA (pathological demand avoidance/persistent drive for autonomy) families. She co-authored the book Navigating PDA in America with Ruth Fidler which was published in June 2024. In April 2024, Diane was diagnosed as autistic.

Diane has a private practice in the suburbs of Chicago, where she serves neurodivergent children, adults and their families. Over the last 40 plus years, she has worked for both private agencies and school systems. Diane has always been facinated by human behavior and has worked to better understand and support individuals with distressed behavior over the years. She currently focuses her practice on providing consultation and training. She works primarily with parents and regularly attends school meetings with them. Diane loves to train educators and therapists so they can better serve their students and clients.

It was the understanding of behavior, autism and the supportive approach in the PDA literature that first drew her to learn more about PDA. And learning about PDA, led her to begin the new PDA movement in North America. Diane formed PDA North America at the first American PDA conference in March 2020. She is the author of the new book Navigating PDA in America.

For more information about Diane’s work:

https://dianegouldtherapy.com/

https://www.pdanorthamerica.org/ 

 

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FULL TRANSCRIPTION


Note: the following transcription was automatically generated. Some imperfections may exist.   

 

 

DR HACKIE REITMAN (HR):  

Hi, I’m Dr Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we welcome back one of my favorites, Diane Gould, who is an expert in PDA, which she’s going to tell us all about, and I don’t mean a personal digital assistant. She’s going to tell you all about this. Diane, welcome back, and let’s start tell our audience, PDA, what is it?

DIANE GOULD (DG):  

You know, I never heard of that personal digital assistant. Most people think PDA means public display of affection, so I like your way better, and I don’t know if I’m an expert, because the the verdict is out whether I am PDA or not. So I think maybe can only be an expert if you have that lived experience. I might be, I don’t know, but I’ll say what PDA is. So in the 80s, a psychologist in the UK was diagnosing kids with autism, and she noticed this subgroup of autistic kids who were different than the majority of autistic kids, but very much like each other, and a key characteristic of the subgroup was that they avoided the everyday demands. So she named this group PDA, saying that they have pathological demand avoidance. And she on purpose, chose the term pathological because she thought it would be helpful that others would not think these kids were avoiding demands. On purpose it was they. She wanted them to know others to know that they couldn’t help it. Now, pathological is not so in favor. So some PDA-ers, as they call themselves, have now kind of changed the name to a pervasive drive for autonomy, yes, or even persistent drive for autonomy. And it’s not just to get rid of the word pathological, it’s also that they believe, and it makes sense to me that the drive for autonomy is what’s most important, and the demand avoidance is a manifestation of that.

HR:  

Gotcha. Now, since our last interview, you had a big development with your own brain. Tell us about it.

DG:  

I did so as part of the PDA movement, which we’ll talk about. And, you know, I so I run PDA North America, and we’ve increased our team members, and we’ve increased our team by including PDA autistic adults as part of the team. And at our last conference, some of them were teasing me about being autistic and not knowing it like or saying, oh, right, Diane you’re neurotypical after I do something, they think it was classic autistic behavior, and it’s kind of a thing in the autism world that autistic people can sense autism and other people so and what I even said to them defensively is I’ve asked colleagues of mine if they think I’m autistic, and they’ve said no, and they go, Uh huh, uh huh. And then I realized after, and it’s so I think significant is that the colleagues I asked know my professional persona, like, it’s not like we hang out and go to dinner, you know they they know me in my, you know, public self. So I went to a psychologist for an evaluation online someone I don’t know who doesn’t know me, and did an assessment, and she was like, Yep, you’re autistic. And I was 65 years old, and I was excited about it, and before I had to kind of ask myself, like, what do I want the answer to be right, like, and I realized how kind of crushed I would have been. As she said, I wasn’t um, and that was kind of telling, and I wrote this whole history thing up for her, because I hate those rating skills and all that. I don’t know how they work for anybody. But anyhow, so I was very excited that I got it. But I was like, I made her meet with me, like, two weeks later to say, Are you sure? So she was like yep, yep. So it’s, it’s been great. It’s really been great, you know? And my joke is, I’ve been a therapist with people, autistic people, for about 40 years, and I just thought I was a really good therapist because I understood my clients so well. So I’m like, yeah, turns out I had an advantage.

HR:  

So then you had another big development, because you decided to take these discoveries and “Navigating PDA in America”, the book was born. Let’s see the hold that up there again a minute…

DG:  

I was saying earlier too, it’s a bit humiliating that I have all these sticky notes. I need to have a copy without all these messy pages, but this is kind of me.

HR:  

It’s you. 

DG:  

It is me, and this is book, and it kind of happened I’m so excited and so proud and so nervous, because it like makes me feel so vulnerable and to have it. But in 2020, which was, you know, a bad year for a lot of people, including me, one of the positive things I wanted to happen coming out of that year was that I was just going to ask for everything I want, and then just take the nose, which wasn’t really my personality. So I connected with a PDA expert, I will call her that in the UK, Ruth Fiddler, who’s written, like most of the books on PDA, and I think I had talked to her once in my life, prior, and I asked her she’d write a book with me for an American audience. And she said yes, and she knows how to write books. So I I had an advantage, and, and, and I wanted Americans to have a book that, you know, had American spelling and American examples and explained the American Medical System and the American School. 

HR:  

And it was not a scientific tome. It was a readable thing.

DG:  

Yes, it’s very readable, and my hope is it gives information to people, and also, like families feel heard and people feel seen by by having in a book, a book, and, you know, people and won’t just say, Well, I think it’s a UK thing this. PDA, now it’s an American thing. Very excited .

HR:  

Now does autism look different when someone has PDA, and if so, how?

DG:  

So I love that question in part, because I think PDA explains a more accurate autistic presentation, that the kind of the way PDA views autism is this non stereotypical, broader way that’s more inclusive of girls and women and and I think it understands autistic brains better than you know, most conversations, lessons, books, even just about autism. But there are kind of differences in the profile in that PDA-ers understand kind of the social landscape and what’s expected generally more easily than a typical autistic person, and they can use that knowledge to kind of navigate the social world. They make eye contact. They can be very charismatic. They’re very socially motivated. They like spontaneity, and don’t like routines. Follow. Know, but you know, set by other people, which is kind of different than how we usually treat autistic people. Behavioral rewards and consequence strategies do not work for this population, and they have this strong drive for autonomy. They kind of need to do things their way, and they’re very creative and imaginative…

HR:  

So would you say there’s been a lot of progress in the PDA community?

DG:  

Yeah, I’m really excited about it. We’ve so I started PDA North America after a workshop I did in March 2020, and it became clear it needed to be kind of a start, not a ending this workshop, and we just became a nonprofit maybe a year and a half ago, so that was after we had last talked. So now we’re a nonprofit, even though we’re so busy spreading awareness, we do much on fundraising and getting grants, which we need to do. So we’re really a nonprofit. There’s like three of us part time who work for it, but the awareness is is really growing. So we had a conference, because we have a annual conference March every year in Chicago area, where I’m from, but it’s hybrid, because PDO families can’t always just travel. So in 2023 we had 205 people participate, and the last conference, 2024 we had over 500 people. So I’m nervous for the next one, which is almost all planned. I’m very excited, because it’s really growing. I think in 2023 we had about 800 people. Maybe, if I’m, if I’m being positive, on our little mailing list. And now we have, we have a huge mailing list and webinars probably three times a month, another kind of Q and A with a professional one time a month. We have support groups, we have downloadable resources, we have blog posts. We’re just growing and growing and growing. It’s really wonderful. And parents are, you know, feeling supported and meeting each other and not feeling isolated. We still have a lot of work to go, especially in the medical community.

HR:  

They’re always the last.

DG:  

I don’t want to say that. You’re allowed to say that.

HR:  

I have an MD, so I’m allowed to say we’re last. Is there a gender difference when it comes to PDA?

DG:  

Well, I think that PDA has been really ahead of the autism curve, kind of like I was saying before. So in PDA, it there’s no gender difference, 50/50, but in kind of the traditional way we look at autism, it’s like four to one, right? But I think it’s 50/50, I think we’re just not recognizing non stereotypical, you know, presentations

HR:  

of more and more people are coming around to that way of thinking.

DG:  

I know, I know, and, and I’m so excited about that. I mean, I was diagnosed at 65 right? And what I found really interesting in my diagnostic process is that, like autism is a big interest or special interest for autistic people who are undiagnosed, especially women and and a lot of people become therapists who are autistic because that kind of interaction works well for us.

HR:  

How can people learn more about your work?

DG:  

Um, the PDA North America website is a great way. So www.PDANorthAmerica.org um, I’m trying to be better about telling people to buy the book, which is really makes me nervous. Um. So, but people should buy this book and give it like their doctor and their church. Yes, “Navigating PDA in America: a framework to support anxious, demand, avoidant autistic children, teens and young adults”, so we don’t have the word pathological.

HR:  

And what is the age groups would you say? How do you break that down, if at all?

DG:  

In the book, or in general?

HR:  

In general. 

DG:  

I think you know we’re skewed, because PDA is so new here that often it’s parents of kind of school aged children who are finding the resources. But I think, like anything, as awareness builds, more adults are figuring out that their PDA, I get emails all the time from adults who have struggled their whole life with executive functioning skills and employment, which is a whole huge area that I’m hoping we’ll get more involved in, so the and people kind of having the answers right to their own struggles and understanding themselves. I mean, that’s magic. That’s beautiful.

HR:  

What can we do, and what can you tell, what can you say to the people who might be thinking right now as they watch or listen to this:you know, I think I might have PDA – what advice would you have for them?

DG:  

I would want them to know they’re not alone and they’re seen. I’d want them to know, and I’ve been thinking a lot about this lately, I I want them to know that independence is a false construct, and people need people and autistic and autistic. PDA, people really need a village, and they need people to help create this village. This whole sense that we have to do things alone is very harmful and false. Most of us don’t, and I also think that we just need to stop looking at, you know, the concept that needing others to help us and so give us the support we need, like is a luxury or something we should be thankful for, whether it’s a child in class or an adult who needs support at their job. Like, I think we’re all entitled and deserve the best life we can live, and I think for especially PDA individuals, that takes a lot of support, a lot of help from people.

HR:  

And what would you say the incidence is of PDA?

DG:  

I think it’s under reported. I think it’s been tossed around in the UK, maybe 5% of autistic individuals, but I still think we don’t know.

HR:  

Can you think of any reason that America may have struggled with the concept of PDA?

DG:  

Yes, and that’s a great question. We are so tied to any of our old fashioned belief systems, whether it’s about neurodivergence or autism or education or behavior, and I think it’s just a hard concept for people to unlearn what they’ve been taught and trained in. I think that’s harder than learning new things, which is also hard. And I believe our systems, medical educational parenting are so behavioral. When I was writing this book, when I was writing about kind of our education system, uh, my co author in the UK, um, she said, You can’t say that. And I was like, This is how it is. Everything’s reward and consequence. We value compliance and PDA kind of challenges, and goes against that mindset.

HR:  

So PDA and autism, you’ve painted a kind of relationship between them, but are they really not separate entities?

DG:  

Some people would say yes, but the majority of PDA individuals and people who work in PDA and PDA in North America, we feel strongly that PDA is a profile of autism, and PDA-ers share the differences with other autistic people, sensory differences, interoception differences and increased anxiety, kind of social differences, kind of all the same kind of big picture differences. 

HR:  

What about other neurodiversities, such as ADHD?

DG:  

There are definitely people in the world who feel that you can, you know, be ADHD and PDA, and, you know, I’m fine with people having different views. I don’t know if that’s a function of being 66 that now I can have a more open mind. Or, I think people, you know, if PDA resonates with you, like, welcome to the family, but some people do think — nonverbal learning disability and ADHD are areas that have been talked about. I also think that it’s it’s helpful to view PDA as an autistic profile as we build awareness, as we get support and understanding for PDA individuals, the hardest Part of that is PDA individuals you know, get an autism diagnosis, and then we need to make sure that the recommendations for that person fit someone who with a PDA profile, not kind of the standard autism recommendations, which, you Know, I’m not so happy with in general, any.

HR:  

How does an understanding of PDA change one’s view of society at large?

DG:  

It helps us gain comfort with allowing more divergence and diversity in in the human experience that people can do things different ways, people can act different ways, people can think different ways, and people need different ways to be supported. I I know as a therapist, what is so striking to me is that I have learned more in I guess, the five years as a therapist working with this population than I had in the decades before, in terms of, like, figuring out, like, what makes people tick, or the whys behind behavior, kind of, you know, why people do what they do, and what people need. And, I mean, that’s a gift, I think, for teachers, therapists, professionals, parents and individuals like that, journey of understanding is is really the key. 

HR:  

Well, Diane. Diane Gould, we learned a lot about PDA. We’re going to all go out and get your book “Navigating PDA in America”. 

DG:  

Thank you. 

HR:  

We’re going to have you back sometime soon. 

DG:  

I would love that. 

HR:  

And we’re going to be looking for PDA to get more on the national and international agenda addressed.

DG:  

Thanks so much for your help with that. Yeah, this podcast really has helped so I appreciate it.

HR:  

Well. Thank you very much, and we hope you won’t be a stranger. Diane Gould, thank you.

DG:  

Thank you so much.