Autism & PDA: Understanding Demand Avoidance, with Diane Gould | EDB 268

 

PDA North America founder Diane Gould discusses the “Pathological Demand Avoidance”, and its occurrence along the autism spectrum.

(VIDEO – 30 mins) Diane is a therapist, consultant, and Licensed Clinical Social Worker. She has worked for both private agencies and school systems.  She has served as a consultant and been a guest lecturer for many area school districts, parent associations and private agencies. She is proud to be the first American professional with a certification in Pathological Demand Avoidance Syndrome. 

To find out more about Diane’s work, visit:

http://www.dianegouldtherapy.com/

http://www.pdanorthamerica.com/

 

 

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FULL TRANSCRIPTION


 

DR HACKIE REITMAN (HR): 

Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today, we’re so lucky to have coming to us from Chicago. Diane Gould is not only a clinical social worker, but she is an expert in some I want to learn about PDA. And we don’t mean public displays of affection. We’re talking about the PDA that Diane Gould is going to teach us about and I’m not going to steal her thunder, and even tell you what PDA, Diane Gould is going to tell us. Diane, welcome to Different Brains.

 

DIANE GOULD (DG): 

So happy to be here. Thanks for having me.

 

HR: 

Well, you are a clinical social worker who’s an expert in PDA. So let’s get right to it. If it’s not a public display of affection, what is it?

 

DG: 

So first, I want to say, I’m an expert for America, in PDA, and we’re just starting in this. So we’re decades behind other places. But so maybe, secondly, I want to apologize for the horrible kind of acronym PDA, because everyone does think of public display of affection. And a lot of people don’t like what it really stands for much better. So it’s “pathological demand avoidance”. And many people, especially autistic individuals, and PDA-ers, don’t like the word pathological, as part of the title of PDA. So sometimes we call it the demand avoidance profile of autism. There’s one PDA-er in the UK, who is trying to regain rename it a pervasive drive for autonomy, which is part of kind of when we talk about PDA, you’re gonna, you’re gonna recognize that that’s probably a good title for it. But since we’re trying to build awareness in America, we didn’t want to mess with the name. So it’s really this demand avoidance profile of autism that’s recognized in other countries, but new to America.

 

HR: 

Tell us what it is.

 

DG: 

Okay. So let me let me start with a tiny bit of history, because I think it’s helpful. So years ago, and like in the 80s, a psychologist in London, who was doing many, many diagnostic evaluations for individuals with autism, noticed the pattern that there was the subgroup of individuals who were different than all the rest of the autistic children and adults, but very similar to each other. And this subgroup had in common, this intensive need to avoid the everyday demands of life. And they did that by this need for control. And that as it people researched it, and started to talk about it in the UK, became known as PDA pathological demand avoidance. And there was papers, you know, written and books written in a PDA society form for resources. And now there’s even schools in the UK. So it’s people that are autistic. So they share similarities with kind of the rest of the autistic folks in terms of, you know, kind of differences in how they experience the world. And we can kind of talk about autism. More later, if you want, but I think it calls for this broader look at autism where advocates in the UK especially the ones working in PDA, feel like America, we have this old fashioned male stereotypical view of autism, that’s so outdated, where PDA also looks at autism more broadly, and includes many more individuals and girls and women. But generally, PDA or is are kind of, I don’t know better, more skilled at communication, and more socially interested and, and they use imagination a great deal as part of this profile. So it’s kind of like a subgroup.

 

HR: 

Well, then it sounds like it might go down the path of Asperger’s with intense fights and everything.

 

DG: 

Right, right. And I have not wanted to take that on, even though it would be great to see this in the DSM one day, I’m hoping someone else will fight that fight. Because why? It’s important, in my opinion, to recognize PDA. Well, there’s many reasons. But one reason is that the strategies and supports and techniques that are taught and used for educating and supporting autistic children and adults not only are ineffective for people that fit this PDA profile, they make things worse. And that’s why it’s so important. And also, because so many PDA-ers, as they call themselves don’t seem autistic, whatever that means, and don’t always meet the criteria, even when they’re evaluated for autism. The psychologist might say, Oh, he makes great eye contact, or she’s too imaginative, or to social, she can’t be autistic, this old fashioned way. So the parents and the individuals are left feeling isolated and misunderstood. And parents get blamed and told you just need to be more strict, you have to have more boundaries for your child, you need to place more demands on them, more structure, more rewards, and consequences. What all those things make things worse, because the anxiety is the driving force. And I think until I started really focusing on PDA, I hadn’t really thought about how rewards, even praise can increase anxiety. Most of us who work in the field, we like praise, we like showering people with rewards, it feels good. But it makes sense to me now that that just adds pressure on people. Like if you get a reward on Monday, then you can be flooded with anxiety. Well, what if I don’t do as well, Tuesday, they’re gonna expect me to I better not even come to school on Tuesday, because I might disappoint them, I might not be able to do it. So rewards get in the way. So does that structure so? So for understanding for parents who feel isolated and judged? All that misunderstanding? We really do you need America to start recognizing PDA. And I’ve only been focused on it for the last couple of years. And like the psychologist and the 80s. In the UK, I hear from a family every day now, an American family who has a child with PDA or a young adult with PDA or an individual with PDA. And they are very similar the stories whether it’s family in Manhattan, or you know, a family on a farm in Idaho. The presentation is very similar and the parents are amazing, amazing, amazing. People.

 

HR: 

You know, when I wrote the book Aspertools. I was interested in tools. What do you use? So what I want to delve into here– you’ve told us some of the stuff that does not work. All right. What works?

 

DG: 

All right, great question because that is most important. So I think for parents and professionals to get in the mindset of what works, it takes a paradigm shift, kind of getting rid of these preconceived ideas of what children need individuals need autistic people need. So that’s I think the first step what works is collaboration, partnership, sharing tasks, building trust, and that’s first and foremost is through this trusting relationship and partnership. That individual who fits this pro profile can I feel less burdened, less pressured, less anxious to tackle the demands of the world. And those are key factors. And that autonomy part that pervasive drive for autonomy is part of it, then I think autonomy and control is almost like oxygen. For people on this profile, it’s not a choice, it’s a need. It’s something that they hold on desperately to. So respecting that giving a lot of control, a lot of choice, but it’s really through those trusted relationships and partnerships. And, and I think they need the people in their life to be genuine, without agendas, because sometimes professionals and you know, I’ve made a trillion mistakes, in my decades of work in this field, we come in with an agenda or a timetable, like, alright, we’ll work on report for the first two sessions, and then we’re going to start the real world, you know, and we need to kind of throw all that out. And just kind of go with the flow, and have the PDA-er keep that control. I think what also is our main charge is help helping the individual, you know, in a very respectful way, figure out what they need to be okay. And then help them figure out how to articulate those needs to others.

 

HR: 

So in studies that have been done, if any have been done, or in your experience, what are some of the things like give me the top three things if you know of him, what they have found that they needed when you did ask, when you did try. Instead of using the old rewards and discipline, that kind of thing. What were some of the responses?

 

DG: 

So I don’t know if it’s been researched like that, but from my experience, I think flexibility and understanding from the other person. And part of that understanding would be that on one day, or during one hour, a person may be able to perform in a certain way. But the next day, or the next hour, they might not, because stress builds up. So I think being able to collaborate. So let’s say it’s a teacher, or a therapist, or coach or parent to say, kind of how are you feeling right now about this? What do you what do you think you can do? And what do you think you can’t handle? So that collaborative problem solving, giving the control for the person so that understanding control, trust is, is paramount.

 

HR: 

understanding, control and trust. So say I have a child with PDA. And I suggest nicely that they make their bed every day. Take it from there.

 

DG: 

So that’s a great question. So what we talk about in the PDA world, and it’s not natural, and I’m still learning it, is to kind of talk in, like non directive ways. So and some people you know, those great speech, folks, you know, it’s it’s declarative language. So instead of a direct demand I want you to make your bed every day, and I probably wouldn’t do every day. No, I mean, I wouldn’t put that part. It would be something like talking to yourselves. Maybe like your room is so nice. I wonder if there’s any way with that, like, we can make your room look nicer even. Maybe that person, the kid might say, Well, maybe if the blanket wasn’t on the floor, so they might come up with that or saying kind of like an invitation, and Invitational approach. Like I’m wondering if later we might be able to work on your bedroom and safely Get it to look nicer. So that’s that partnering. It’s, it’s softens the demand by kind of saying, I wonder. So it’s kind of taking down these demands, taking down the pressure, taking out the word you, I want you to make your bed, you and your can make people cringe. And what’s interesting about PDA-ers is you can have a child who is about to make their bed and you walk in and say something about their bed needing to be made. And then they are no longer able to finish making their bed. Because you place the demand, even if they had wanted to make their bet, because they like how it looks. Having a demand placed by someone else kind of takes the oxygen away, it makes them unable, not unwilling. And that’s really an important, distinctive characteristic. It’s not a won’t, it’s a can’t. And what’s really unique about PDAs that I don’t want to forget to say is often they can’t do things that they want to do. Because the pressure is so high, it mobilizes them. And that is a hard way to live. There’s a really good YouTube made by the PDA society called demand, avoidance of the PDA kind. It’s kind of interviews and voices of a lots of PDA-ers and professionals too. And there’s a little girl who talks about this book she wanted for Christmas or birthday so badly that it’s all she talked about. And she got the book and carries it with her wherever she goes, sleeps with it. Everyone who sees her says how’s the book, she hasn’t started reading, it can’t make herself because that expectation, the demand was so high. And I think when we think of demands, we think of like make your bed and and do your homework and take a shower. And those are those direct demands we tell our children, but I don’t know if we think as much about expectations being demands to like how you’re supposed to act in a situation, and one PDA-er who has a YouTube channel the following and he’s an author Harry Thompson, in the UK, he’s a adult now. But he talks about when he was a kid and he came down every morning for school. And his mom would say good morning. And the expectation that he’s supposed to say good morning back was enough to start his day stressed. And all through the day, there’s expectations including the things we want for ourselves.

 

HR: 

Now what happens… Let’s say we follow that prescription. Okay. And then the person goes out. I’m just making this up. They get a job at Publix. Yeah, in the real world. Somebody says you got to put that stuff in the bag. How are they going to function?

 

DG: 

For some people it won’t work that they have to follow their passions job wise that generally PDA-ers, like to learn they have a lot of interests and if they can make those interests into their job that that can help. Sometimes you could have a boss at Publix or Chicagoans are listening. They won’t know what Publix is at the grocery store. Because we don’t have Publix here. So at Whole Foods, if they have a boss who will really collaborate and give them a lot of control that will help. There’s also kind of part of PDA according to some adult PDA-ers is that there has to be what’s in it for me factor. So if the they really need the pay from the job to buy music equipment or something there Interested in, it might be enough for them to be able to do the job. But what can happen, which people need to understand is holding it together at work, or what is known as masking, and kind of the autism and the PDA world is pretending, you know, kind of masking, holding it together to fit into the neurotypical world takes such a toll that they might bag for four hours, and then they might go home so exhausted, that they have to make sure that there’s nothing else on their calendar that day. And no one better make demands on them. Because they’re all used up all their spoons are used up from the bagging. So it’s a balancing act. Now,

 

HR: 

everything’s a spectrum. Yes. Autism Spectrum? Yes. If we’re going to say that PDA is a subset of autism spectrum. Can you put up an approximate number in your guestimation as to what percentage of those of us on the autism spectrum have PDA?

 

DG: 

It’s thought around 5%.

 

HR: 

Okay, yeah. And now, many parents might argue: every teenager has some PDA when they were about 13 years old. Take out the garbage — No.

 

DG: 

Right, right.

 

HR: 

work the other way, what does PDA in your view exist outside of the spectrum?

 

DG: 

No, no, because it really is a profile of autism. So PDA-ers have all the sensory differences as other autistic people, sometimes the difficulties with context and prediction, and those those things, and I think one difference, too, with between a PDA-er, and the 13 year old who says no to the garbage is often the PDA-er is really wanting to be able to say yes, so they might negotiate, they might distract, they might come up with a wild reason why they can’t do it, that their hands don’t work today, so they can’t take out the garbage. They might go into an imagine a tear, imaginative role to avoid or they might go into some kind of roleplay role to be able to take out the garbage. And that’s why it’s different from like, ODD oppositional defiant disorder, which some PDA-ers, because we don’t have PDA, have been diagnosed with that. But But it’s different. The PDA-ers, want to be able to do it. Do these demands, they just can’t. Yeah, and that’s another reason why rewards don’t work. And they and I do some work for kids with trauma backgrounds, too. And rewards don’t work. And for many kids rewards don’t work. And consequences because if you can’t do something you can’t do it doesn’t matter how big the reward is. And it just sets everyone up for disappointment.

 

HR: 

So tell us about Dinner With Friends instead.

 

DG: 

Oh, thanks so much. I am not a great sleeper, which is a bad thing. But the good part is I usually come up with ideas at three in the morning. So Dinner With Friends was like a 3am brainstorm because I I do a social skills program even though I know the concept of social skills programs is really controversial. So I tried to do it in a autistic affirming or neuro diversity affirming way that’s really about teaching people about relationships, and everyone could use that and communication strategies that work so I do the peers evidence based model developed by UCLA with a with a couple of twists, my own twist. And it’s for teens and young adults. So I’ve been doing this prop this program for maybe six years. And the young adults, especially, they still weren’t having a lot of social opportunities after the program. They weren’t dating when they wanted to date or meeting enough friends. And it’s, and it’s was so hard for them, I wanted to take it farther. So I came up with this problem dinner with friends. So we do I rented a townhouse in a suburb of Chicago, that’s very accessible with transportation. And I have groups of four young adults, myself, and a friend of mine who’s an occupational therapist, so she, she knows all this stuff, I don’t know. And we cook dinner together. And then so that works on kind of life skills and independent skills, and I love cooking and food. And then we sit in eat together, and we use all the conversation skills that we learned in the 16 weeks. So it’s a whole semester and making keeping friends social skills. And then we plan the next menu for the next week, which requires all that taking into consideration that are so and so hates, you know, onions, and this person, you know, only eats chicken or whatever. So we come up with a menu that everyone agrees on, we do a little cleanup, which is also kind of preparation for independent living. And then the next week, we do it again. And it’s so much fun. And like one of the couple started dating from the group that they met. We happy. Yeah, and it’s on a weekend. So when people say to them, like at work or whatever, what are you doing this weekend, they can say, Oh, I have dinner with friends. Cool. So very excited. We stopped we started right before the pandemic and we stopped it. But we’re supposed to start in a couple weeks. Back again.

 

HR: 

is there anything we have not covered today that you would like to talk about?

 

DG: 

Just one one thing about schools, because if you have parents listening, is that school is a really hard place for PDA-ers. It’s all full of demands and expectations and navigating the social world and not always sensory friendly. And in the UK, they say that about 70%, of PDA-ers children don’t go to school regularly, because it doesn’t fit for them. I mean, I believe schools can work if they want to, for all children. And there are resources for schools to be able to do better with kids with all kinds of differences. So I’m hoping that, you know, through a trauma support, or trauma informed lens, PDA, and neurodiversity informed lens is that schools in America can do a better job. And these are kids that have been secluded and restrained in the past. So I want parents to be able to advocate for their schools, or what if you have school personnel listening to kind of get behind this. And there’s crisis intervention models, also from the UK called lower arousal that can really support struggling kids.

 

HR: 

So how can people learn more about you and your work?

 

DG: 

My website is www.DianeGouldTherapy.com. And we have PDA NorthAmerica.com too.

 

HR: 

PDANorthAmerica.com. Very good.

 

DG: 

We have webinars, resources.

 

HR: 

What is the one thing you would like our audience to know about PDA?

 

DG: 

Alright, I’m going to try to slip in more than one that it’s a profile of autism and anxiety driven need for control. That requires avoiding everyday demands. And it’s a matter of can’t not won’t.

 

HR: 

Diane Gould – PDA expert. Thank you so much for being With us today here at Exploring Different Brains.

 

DG: 

Thank you so much.