Navigating PDA in America, with Diane Gould and Ruth Fidler

gender nonconformity kids

In today’s conversation, I’m diving into the much-anticipated book Navigating PDA in America with the co-authors and thought leaders in the PDA space, Diane Gould and Ruth Fidler. We’ve touched on PDA in past episodes, but I learned so much from this book, and I’m excited to share it with you because PDA is a diagnosis bringing a lot of clarity and relief to families. As it gains traction in the neurodivergence space, the more we know, the better we can support PDAers in our communities. In this episode, we talk about the nuances of the PDA profile and how to one might determine if the identification fits, where North America stands in understanding PDA in comparison with the rest of the world, the challenges PDA individuals face in school and how they can effectively be addressed, what type of therapy is best for someone with a PDA profile, and much more.

 

About Diane Gould

Diane Gould 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 making it part of her life’s mission to gain more awareness and understanding of PDA in North America through this non-profit organization.

About Ruth Fidler

Ruth Fidler is an Education Consultant specializing in complex presentations of autism, Pathological Demand Avoidance (PDA) and emotional well-being. She worked at an all age non-maintained special school for 22 years until 2014 and has worked independently since then. During her time on the senior leadership team the school sustained Ofsted outstanding status. Ruth worked within the school promoting interactive approaches and emotional well- being for pupils with varying autistic profiles. As a member of the leadership team, she had a strategic role and contributed to continuing professional development for all staff. She also led an outreach pilot project working with other agencies to meet the needs of children and
young people currently unable to attend school.

As well as providing training, she regularly observes and monitors teaching and learning, supporting staff to embed and refine good autism and SEND practice. She often presents at local or national events and conferences for parents and for a range of professionals. She provides training and consultancy for a variety of schools and services across the UK. She has contributed to publications in the Good Autism Practice (GAP) journal on the subject of promoting emotional well-being and is co-author of the following books: Understanding Pathological Demand Avoidance Syndrome in Children, Can I Tell You About Pathological Demand Avoidance?, Collaborative Approaches to Learning, Girls and Autism, Being Julia, and Navigating PDA in America.

 

Things you’ll learn from this episode

  • How Diane and Ruth came to share their personal journeys working with neurodivergent individuals and collaborate on the book Navigating PDA in America
  • The state of understanding and awareness of PDA in North America in comparison with the UK and Australia
  • The factors that distinguish a PDA profile of autism, including using socially strategic ways to avoid demands and more
  • Ways schools can better support PDA students, such as adopting flexible approaches, building trust, and recognizing the need for fluctuating capacity and recovery time
  • Why traditional therapeutic modalities may be ineffective for PDA individuals, and what is most important for therapy to be successful and positive

 

Resources mentioned

 

Want to go deeper?

The Differently Wired Club is not your typical membership community.

There’s something here for everyone, whether you’re a sit back and absorb learner, a hands-on, connect and engage learner, and everything in between. Join the Differently Wired Club and get unstuck, ditch the overwhelm, and find confidence, connection, and JOY in parenting your differently wired child.

 

Learn more about the Differently Wired Club

Episode Transcript

Debbie:

Hey, Diana and Ruth, welcome to the podcast.

Ruth:

Thank you.

Diane:

So happy to be here.

Debbie:

Yeah, I will say I’ve been looking forward to this conversation since I first heard about your book coming out. Usually I get pitched books and especially from your publisher, Jessica Kingsley Publishing, they do wonderful books in the neurodivergent space, but usually they’re alerting me to new books. And when I found out about this book, I’m like, when can I get an advanced copy? When is this book coming out? So this feels like a long time coming for me. I’m just so excited to have you both here. What I’d like to do as a way to start is, you I’ve already read your formal bio, but, and we’ve known each other, you know, over the internet for a number of years, but I would love to, if you could each just take a moment to tell me a little bit more about how you came to be working in this space, kind of wrapped up in your personal why. And then I’d also love to know how you joined together to collaborate on this project. So Diane, would you kick us off?

Diane:

Sure. I’m a clinical social worker and I’m one of those people that decided to become a social worker in fourth grade when I read a book on Jane Addams. And I kind of fell into working with neurodivergent kids when I was a kid as a volunteer. And my career grew and I focused on serving autistic individuals. And I’ve worked in, you know, schools and agencies until I decided I really couldn’t have a boss and needed to just work independently. And I focused on, you know, serving autistic kids and adults. And I then did some focus on trauma. And I think everything that’s ever really happened in kind of the disability or neurodivergence world happened because a mother wouldn’t take no for an answer. And one of my clients said, I heard of this thing about PDA and it’s called PDA. And, know, have you heard of it? And I’m like, yeah, I think so. But, you know, there’s always stuff popping up about autism. So I didn’t pay attention. And then she sent me like a hundred articles, probably a lot of stuff written by Ruth until I paid attention. And that, my gosh, you know, I love this. I know these kids. And the approach is what I’ve been talking about for all my clients with trauma histories who were struggling and it was just said all better than I’ve been saying it. So I kind of said, well, I’ll learn everything about PDA and hold a workshop and we’ll see if anyone comes. And that was March, 2020.

Debbie:

Wow, okay. Thank you so much for sharing that. And Ruth, I’m so curious to hear more about how you came to be doing this work.

Ruth:

Thank you and thank you again for inviting me to join you. It’s a pleasure to talk with you all today. Interestingly, my start point was not dissimilar to yours, Diane, working on a voluntary basis as a child with other children with additional needs and working supporting other children with additional needs through my time in college. And then for maybe 25 years, I worked in schools. I’m an educationalist by training and background and worked for a long time as a senior leader in a specialist school where we had students between the ages of five and 19 representing all different presentations of autism. And I was lucky enough at that time to be working with Elizabeth Newsome herself and Phil Christie. In fact, Elizabeth was on my interview panel and I often think I was glad I didn’t really know who she was, otherwise I wouldn’t have been able to even spell my name. I’d have been so starstruck. And then I worked there for a long time and developed a real specialism and an interest in supporting autistic individuals where there was an emotional wellbeing need that was really particularly dominating for them and was quite impactful and so developing ways of interacting and engaging them in education and with self -awareness and developing all the work on PDA approaches. And then for the last 10 years or so, I’ve been working independently and I work all across the UK, giving training, consultation and strategic development work with all sorts of children’s services. 

Diane:

All right, so here’s my story with that. 2020 was not a good year for many of us, and it was really a crazy year for me. So I thought, all right, I’m gonna set some goals and make some changes in my life. And the main thing I decided to focus on was to just ask for everything I want. And then if I get nos, I get nos, right? So I thought, all right, I really want to write a book and I want an American PDA book. I’m like, I’ve talked to Ruth Fidler once, so maybe I could just reach out to her and ask her if she’ll write a book with me. Ruth very politely said, well, we can have a chat. Quickly, you were on board when Ruth, when I was saying just how badly an American focused book was needed, that having to only read books that were based in the UK for parents, it was helpful, but it still made them feel really unseen and isolated because the education system was different and the healthcare system and the spelling and our word choices. So it didn’t help them feel seen and understood. Ruth wasn’t, you know, afraid that I had never written a book before. But she was on board and we started right away. Took a while, but we started right away. I’m just so excited about it. And it was a great process. I learned so much and Ruth was so patient.

Ruth:

I learned a lot as well. And I think it’s always interesting really getting under the skin of how things are viewed differently in different countries, different legal systems, different education systems. And there’s some variation across the UK in that regard, but obviously not as much as between the UK and America. So yeah, that was a really interesting process. And it’s good, it’s good to stretch ourselves and to learn something new and to go outside our comfort zone. That’s good for any of us.

Diane:

Absolutely. Yeah, my joke, and we’ll probably touch on it later, maybe when we talk about education a bit, is when I was writing about the American education system, Ruth’s first comment was, you can’t say that stuff. I’m like, no, I’m not making it up. It’s real. This is how it is. She thought it was fictionalized. So.

Debbie:

Yeah, interesting. I want to just touch upon that, I think I was trying to think of when I had Dr. Melissa Neff on my podcast. I had had her on probably in the first year of doing the show about neuropsychs. And then she reached out to me and she said, Debbie, there’s this thing that I’m noticing and it’s not being discussed in the US at all. And I think we need to have a really deep conversation about it. It might’ve been like 2018, 2019. And it’s just been fascinating to see how especially in the US, there’s just been this kind of a rapid increase of understanding and awareness and this is language now that so many people use. And so I’m just wondering, where do you see North America, the US in terms of its understanding of PDA in comparison with the UK and Australia too I know Kristy Forbes is in Australia and I always kind of thought that’s where this originated, this is where the understanding is and the US is kind of playing catch up. So I’m just wondering, where do you kind of see where North America is right now?

Diane:

Well, when I hosted that conference in March 2020, it became clear that it wasn’t an ending, it was a beginning. And we had to really start an awareness campaign. And PDA North America was formed then. We just became a nonprofit about a year and a half ago and kind of the first year I kind of just did it out of my back pocket. But every month I talked to more people and got more calls and it just was growing and growing and growing. you know, parents were telling other parents, which is really what was happening. And we began training professionals and really focused on getting the word out. We do this annual conference. So in 2023, Ruth came over and was our keynote and we had about 300 people. And 2024, we had over 500. And the awareness is spreading. at PDA North America, which, you know, I’m the executive director and founder. We do webinars, two webinars every month. We have newsletters, we do support groups, and it’s really filling a need. I think that the UK will always be the leader, but I think we’re catching up. Schools are rough. But some schools are improving. More and more neuropsychological evaluations are including PDA, but there’s still a lot of work to be done. So I think we’re doing well.

Ruth: 

I think one thing that is interesting to me, sort of watching the work in America roll out, is that I’m picking up a lot of similar narratives, particularly from families in America who are responding with that. We had the diagnosis of autism, but it didn’t quite fit. And I can see that my child’s profile has its roots, if you like, in autism. But actually this presentation of their autism is quite distinctive. And particularly when they’re then encouraged to try a lot of behavioral approaches that not only are ineffective but actually seem to make a lot of things worse. It’s a bit of a light bulb moment for a lot of those families and professionals to come across the stuff on PDA because they see these children in front of them. So they’re either living with them or they’ve got them in their school settings or wherever they’re coming across them. So they don’t really need convincing of the relatability because they know the individuals. And what I hope for America is because the UK has been talking about this and writing about this for a very long time now since the 1980s, and particularly a lot more in recent decades, that actually there is quite a good bank of information out there. There are a lot of publications now. There’s the UK PDA Society, there’s PDA North America. There are places to go to get that information. And I can remember going out doing training where I took one book and one pamphlet because that’s all there was and now I don’t think I could carry all the books to an event which is really encouraging.

Diane:

So I think we have such a wonderful opportunity because now we can kind of build on the experience that the UK has. We have kind of this little international committee and we can make life easier for individuals and families because one of the things we know from the UK is 70 % of children can’t access school regularly. And in my mind, we now have a chance to change that here. We know what we need to do. And I just feel so grateful and fortunate that we can do that. Because PDA parents in America, as Ruth was saying, they had the light bulb moment. They’ve done their own research. They figured out the hard way what doesn’t work and what works. And, you know, now we can kind of change that trajectory for them. So as their children are becoming adults, we know how to support them.

Ruth: 

And it’s about stepping away rather from that very behavioral model and helping people to interpret behavior rather than judge behavior.

Diane:

Yes, and also giving people what they actually need, not giving them only what you think they should need. And that’s a big difference because PDA individuals need a lot of support. And parents need a lot of support. And we have that, you know, kind of pick yourself up by your bootstraps, you know, mentality in America and the focus on independence and not relying on other people. And that just works against everyone.

Debbie:

Yeah, such a good point, such a good point. There were some things I learned in your book that I’d love to dive into a little more. So you were talking about PDAs being a presentation of autism, which I have known. And there was still something in the way that you described it in your book that was, I understood it in a different way. I think when I thought about a presentation of autism, I was interpreting that as autistic with these extreme avoiding behaviors. And as I was reading, you wrote that children with PDA tend to use socially strategic ways to avoid demands and expectations. Another thing that jumped out at me is that a lot of PDA people, kids have seemingly good social skills, but they often lack a deeper social understanding. So can you kind of tease that out for us a little bit more, this idea of it? It’s not just this extra piece, but it’s a whole different presentation of autism.

Ruth: 

Well, I think we would expect to see those core characteristics of autism in a PDA. So there’s key differences in social communication and social interaction in information processing and being more of a narrow detailed processor and also in sensory sensitivities. So we would would anchor those things in place but what you’re then looking at is how they present is still quite distinctive and unique. So of course there’s that old saying that when you’ve met one autistic person you’ve met one autistic person and the same is true across the spectrum. we need to that’s why I wanted to make that point about interpreting individuals rather than judging them or having fixed ideas of what to expect of their autism. So when you talk about the ways of avoiding, it’s more sophisticated, if you like, and it’s more social than just saying no, and you might get a refusal. But actually, you’re more likely to get something that is related to distracting an adult or acknowledging that an adult is asking you to do something. So it’s not that the young person doesn’t know that, but they’ll find some kind of reason, however believable or not, that is why they can’t do it because they’re terribly busy doing something over there. It might be that they will procrastinate and put off starting something or renegotiate the renegotiations often to the point where the supporting adults can’t really remember where they started or even why they started sometimes. And some PDAs will describe that as a representation of them feeling a little bit uncomfortable or torn about wanting to be able to cooperate with whatever the request is and maybe even knowing internally that actually that is within their capability, but they’re not able to do it in that moment. So they’re trying to protect their social relationships in that regard. And that’s also why some of those strategies of being very, very rigid in a you’re going to do this first, then that don’t really work because they don’t allow for flexibility for our PDAs. And although there are some, what you described there, I think from the book, seemingly good social skills, social understanding, compared to other autistic profiles, actually there’s still some differences there. And if I think of some of the adult PDAs I know, they will still say things to me when I might take them out for lunch or something or how long will we be out? Or if I go around to somebody’s house, and they’ve invited me, by the way, they might say, how long will you be staying? When will you be leaving? Just to sort of still need some of that guidance through those, to navigate that social world. So we would still expect to see those core characteristics, but in a different way and with a different emphasis.

Diane:

And I think, Debbie, add on the points you made that contribute to PDAers not being recognized as and understood as struggling because, you know, kind of their understanding of the expectations socially, interactively can mask so easily their level of anxiety and that they’re struggling. So their needs don’t get met because of that.

Debbie:

Yeah, yeah. Now that makes total sense.

Ruth: 

And just to kind of like, if I can just add one more note in there as well is that I think it’s helpful to view PDA or to understand PDA firstly as a profile of autism, but secondly as a hypersensitivity to any demands or expectations. And what’s really important to remember about that hypersensitivity or that over responsiveness is that it can be triggered by something external, which might be a parent or a teacher saying, can you do this or come over here, put that there. But it also might be triggered by something internal. So that could be a sensory experience of some kind. And it could also be something that a young person might feel that they want to do. But as soon as they’ve recognized it as a goal, even if it’s one that they’ve chosen for themselves, that is responded to as if it was an expectation.

Diane:

And we often forget how cumulative stress is. You know, we kind of focus on, you know, antecedents or triggers, which are last draws, and not how kind of stress builds up in the body.

Debbie:

Yeah, yeah, that makes sense. And I think that is such a good point, that it can be that internal drive that it can be something that is imposed on themselves. That is, it’s just really important to understand that. I have a question. I’ll see if I can get this out in a way that makes sense. I’m really curious to know your thoughts on this. So since PDA has kind of come into, you know, awareness, at least here in the U S you know, my community is parents of neurodivergent kids. and many of whom are autistic AuDHD, and very complex neuro profiles and PDA for so many families has been like, this explains everything. That’s my kid. My kid is demand avoidant or has a persistent desire for autonomy, whatever language you want to use. You wrote in the book that estimates are that one in 25 autistic people have PDA. And so that’s not a huge percentage that you still said, you said it’s still kind of a rare neuro type within the autism community. And I also know that kind of inherently with anxiety and other parts of the autism profile, pushing back against demands is also normal. So I guess what I’m asking is, are you finding that there are more people that are kind of gravitating towards the PDA diagnosis or it feels like a fit that it may not actually be an accurate diagnosis or identification for their child? Like is it kind of being overrepresented?

Ruth: 

Without seeing numbers, unknowing individuals, it’s very hard to comment in a useful way about that, but there’s always a risk of that, of course. Phil Christie, my friend and colleague, describes it as, we need to maintain the integrity of the PDA profile so that it doesn’t then become so diluted that it sort of loses its meaning. I think there is a large group, particularly post pandemic, of autistic people who are very anxious. And as you’ve pointed out, when any of us is anxious, we can be demand avoidant. And we tend to be more demand avoidant the more anxious we are. So if we are supporting somebody who is autistic and highly anxious, some of the style and the ethos of the approaches that Diane and I talk about might be highly relevant and supportive to them, but that doesn’t necessarily mean that they have a PDA profile. And the way that I would expect that to unfold is because if you have somebody who’s highly anxious, autistic, and then you put in things in place that are going to offer them a degree of certainty with flexibility and support their emotional well -being and their self -awareness, you would see a significant decrease in that demand avoidance. Now, if you put those things in place for a PDA, you still might see some decrease in demand avoidance, but you wouldn’t see quite such a profound impact and you certainly wouldn’t necessarily see a reduction in those internally generated demands that they are responding to because that is still part of their neurology.

Debbie:

Yeah, thank you. I really appreciate that. And again, that makes absolute sense. So thank you for that. And I think that was my question, ultimately maintaining the integrity. And I think about that just even through COVID, right? So many TikTokers are talking about their ADHD and their autism and that idea. Well, everybody’s a little on the spectrum. Everybody’s a little ADHD. Everybody’s a little OCD. I think that really can be problematic for people who genuinely have those neurodevelopmental differences. So thank you for that. So let’s talk about school. This is something that comes up so often in my community. So many parents who are raising a PDA child feel that school is just an impossibility. Like how do we take this kid and find an educational system that works for them? So I would love to know if you have some kind of best practices for how parents with kids who have PDA, how they can think about how to even approach their child’s education and schooling.

Diane:

Yeah, it is hard. And also at PDA North America, we’ve been working on a self -paced learning module for school staff that we’re hoping to roll out later this fall because getting schools trained makes such a difference I personally have done a bunch of training for individual schools, all, you know, pushed by parents who kind of convinced their school administrator to get trained. I talk a lot to schools about like an hour, two hour training, and then going back to doing what you were doing before really isn’t, you know, the answer to supporting these kids I do think it’s possible for schools to support PDA students, but it takes a much more flexible approach than many schools are used to doing. We’re very based on rewards and consequences and some progressive schools have gotten away from consequences. But what we know about PDA students is that tons of positive reinforcement also builds pressure. And that’s not the answer. Schools also have to be flexible in starting times. And attendance, because one of the things we’ve learned from PDA adults in the UK is that recovery time is necessary. It’s not a luxury. And capacity changes from day to day, from hour to hour, and it can change from minute to minute. And schools need to understand just because a student could attend an assembly last week doesn’t mean he can do it now, or the fact that they did well on a math quiz or a timed event one time doesn’t mean they can do it another day. So it really takes flexibility. And with PDA students, it’s all about trusting relationships that the school can be a safe place for them. And there’s adults who can keep their nervous system safe, who can co-regulate with them that understand them. And that’s really non -negotiable. training helps, but you have to have that culture and leadership who buys in to that, that it’s not really all kids have to be treated the same, even recognizing the needs of kids who might not have a medical diagnosis and listening to parents who are saying, I know you’re not seeing this at school, but the moment I pick her up, she falls apart and then stays in a room until the next morning. That there has to be that partnership and level of trust. So there’s a lot of work to do and it’s not like a one and done mentality to mean, the advantage of that is that actually it’s not a lot of very expensive equipment that needs to be purchased. It’s actually a shift in attitude and ethos and some of the most striking things that some students have said to me over the years have been when they are in a good placement that is flexible and creative and looks after their emotional well -being and builds trusted relationships etc etc that they will say I’ve never been to a school before where the staff like me and I’ve never been to a school before where whatever sort of day I’ve had whether it’s been good or bad

Diane:

Yeah. And making that distinction between going to school and learning. And, you know, generally PDA kids love to learn. And school can get in the way of that, which is really sad. And that’s not what we want.

Debbie:

Yeah, as we said earlier, 70% of young people in a survey conducted by the PDA Society in the UK could not tolerate school, the school environment, or were home educated. And I know that a lot of these kids do end up being home educated or unschooled. For listeners who are in that boat, who are homeschooling or unschooling their kids with a PDA profile, do you have any kind of guidelines for making that work because you would think that, well, I have complete control. It’s just I let my kid do what they want and it’s all fine. But it isn’t that easy. Do you have any, I don’t know, kind of best practices?

Diane:

I think getting support, building community, and generally, you know, PDA students who have to leave school because it’s not working are sad at giving up, you know, just being with other kids. So building homeschool, unschool communities, so the kids have kids to learn with can make a huge difference and parents have other people because it’s the isolation I think that makes a difference too. I think some families are in the position to homeschool even if they really would rather not just because of the rigidity of the starting times, the getting out the door to go to school. And if schools were more flexible with attendance, that would make a big difference too. I think following the kids’ lead and interest is a wonderful opportunity for homeschool families to have experiences instead of worksheets. There’s all kinds of wonderful things that can come out of it. And every family has different needs too.

Ruth: 

I think it’s also important to recognise that not all families are in a position, realistically or organisationally or financially, to be able to do that. And so those are other pressures on some families and that homeschooling your children actually, if that’s not something you’ve done before, and that’s not something you set out as an active choice, when you became a parent can be quite a daunting task for some people. I think there might be some PDAs who need a period of just really quiet recovery if they’ve hit burnout and that is entirely understandable and right and proper. They will still need whatever support is going to be relevant for them to get through that period. But I think more broadly and maybe strategically, which is what I wonder whether you were asking about in your question, is that I feel that it’s really important while children are children that their options in life are not shut down any more than is necessary so that they have a life that is really starting to open out in front of them, not be limited. And in that regard, I think it’s important, as Diane says, to have that learning community and those social opportunities, but also to not have that narrative of “school didn’t work for you, you don’t go to school anymore” when a child might only be 10 or 12 because actually things can change. So just keeping an open mind and not shutting down those opportunities for young people, I think it’s helpful too.

Diane:

It’d be nice for parents to feel it’s a choice, not something they have to do.

Debbie:

Yes. Yes. And I feel very seen in that comment, because I definitely was one of those reluctant homeschoolers. And I homeschooled for six years, and ended up loving it at the end of the day, but it wasn’t there right away for sure. And it isn’t an option for everyone. So I appreciate you pointing that out as well. There’s so many more things we could get into. We’re running a little long, but I do want to ask one more question that’s unrelated to things we’ve talked about so far, but I’m just really curious. So a few months ago, I did an episode on the show about the limitations of traditional therapeutic modalities with neurodivergent people, including the fact that CBT and DBT isn’t always an effective approach for complex humans. And I’m just wondering if you could share a little bit about what you found when it comes to PDA, if there are any types of therapies that can be more supportive of people who are living with this kind of persistent desire for autonomy.

Diane:

Sure. Well, I’m kind of old and, well, I’m really old and I’m old fashioned, I think, too. And I’ve been a therapist for a long time. To me, what works is kind of just basic relationship based attunement with another human being and being non -judgmental and believing in self -determination and just really like being genuine in terms of, you know, a trusting therapeutic relationship. Just the basics, I think, is what works for PDAers of any age. And I think it might look different in terms of lowering demands and having many more missed appointments and having flexibility and not focusing on accountability or even rehashing behavior, really letting the individual control the sessions and the topics, I think it’s a beautiful thing to partner with another human being on, I called it, you know, I always call it with my clients, the road to self understanding. And that is a wonderful gift to be able to, give or join with a person because it’s so helpful for a PDA or of any age to really understand themself. I think people starting therapy or parents of children starting therapy have to realize it’s, you gotta be in for the long haul. It is not a short -term fix and they might not see any differences and it can’t be about changing the person and making them more compliant. And so a lot is, think, managing those expectations. I also think that some of the trouble with traditional therapy is that, you know, it’s a kind of top down, not bottom up, and it has limited success because of that.

Debbie:

I appreciate you answering that question about relationship based attunement. Absolutely. And I think that’s where it has to start. And listeners, I’m going to have a link to that episode that I referred to it was with Dr. Megan and enough. And Dr. Deborah Browse I’ll have that in the show notes as well. So definitely listen to that. But again, I want to just kind of recap. The book, first of all, for listeners is Navigating PDA in America, a framework to support anxious demand avoidant autistic children, teens and young adults. It came out this summer. It’s a book I was very anxious to get my hands on and it really is very comprehensive and it’s an easy read as well. you can, however you worked to collaborate together, I think the final product is just exactly what so many parents need. So as a way to wrap up, could you each kind of share with me your greatest hopes or goals for what this book does in the world? Ruth, why don’t you kick us off?

Ruth: 

Thank you. Well, I just hope that it reassures people and that it opens their eyes a bit to what is happening with some of these young people so that they don’t feel on the edge, they don’t feel isolated, they don’t feel that they are perplexing and mysterious and they feel totally included and accepted. It’s nice to hear that you said you found it quite easy to read because one of the things that Diane probably got bored of me saying when we were writing is if you’ve got something interesting to say you should be able to say it in a very straightforward way in a short sentence with with sort of plain speaking language and we wanted to write something that was really accessible and we wanted to write something where busy people, whether those are professionals or parents, can pick it up and just read a little section or read a chapter. And then lastly, the other thing I just will say is that there is a link on the Jessica Kingsley Publications website where you don’t have to buy the book. You can download for free some of the some of the guides and PDFs that are in the book if people would find that helpful.

 

Diane:

I know for me, one of my motivations to write the book is, you know, they’re still non-believers. Like I wanted parents to be able to see it’s like a real thing. There’s a book. We have a book. And for them to feel seen and that their life and their struggles kind of they’re real, they’re out there and also for professionals to feel that they can serve these kids. They can educate them. They can treat them as therapists and psychologists can diagnose kids as autistic with a PDA profile, kind of giving permission for professionals to kind of get on board and serve all these individuals who have been just kind of on their own and struggling. So that’s my hope.

 

Debbie:

Yeah, and you know, as you both were kind of sharing your greatest hopes for the book, you know, what I haven’t said that I think is really important for listeners to know is that the book is actually full of hope. So I think so many parents, you know, this feels like a lot to be dealing with, right? If you have a child and you’re recognizing this is what’s going on, and it is a lot to deal with, it is something that’s misunderstood and other people don’t get it and it can be very challenging, but there is so much hope and that really does come through in the book. I just wanted to make sure listeners know that too. There are paths forward. There are ways to really support people with PDA and kids with PDA so they can really grow up and lead self -determined lives that are fulfilling. So thank you for that. Is there a place that you want? 

 

Ruth: 

Thank you for saying that.

 

Debbie:

Is there a place you want listeners to go to check out the book? I will have a link to what you just mentioned, Ruth, with the publisher in terms of those resources, but anywhere else on social media or anything you want people to know about?

 

Diane:

Well, I’m hoping people will go to their local independent bookstore and ask them to order Navigating PDA in America, too. And the PDA North America website is a good place to hear about all kinds of PDA resources as well.

 

Ruth: 

I would agree that PDA North America is the most relevant place for your audience. But if there is anybody listening who’s outside America and who is in the UK, the PDA society would be where you would go. and there are all sorts of links on the PDA Society website to research papers, there’s an inquiry line and there are lots of free to download resources.

 

Debbie:

Wonderful. So listeners, as always, there’ll be a lot of links in the show notes page for this episode. So if you want to dive deeper into PDA, definitely go to the show notes and Diane and Ruth, first of all, thank you so much for being here today, for going over. I always have, I’m so ambitious about how short I’m going to keep these conversations, but we got into it. So I appreciate your time and congratulations again on writing your book and getting it out into the world.

 

Diane:

Thank you. So excited to be on the show.

 

Ruth: 

Thank you very much.

 

THANKS SO MUCH FOR LISTENING!

Do you have an idea for an upcoming episode? Please share your idea in my Suggestion Box.