Chitty Chats with Stacy

Diane Gould
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[00:00:00]

It's so great to see you. Thank you for joining me today on this beautiful Chitty Chat with Diane

Gould. Very excited to be here. It's been quite the day, so I need to do a few deep breaths, but besides that, it's um. We

can breathe here.

This is what we do. That's a good thing. All

right. Welcome. I'm glad you're here.

I was so excited for this conversation today for a lot of reasons. Uh, one, you just came in my life in this very interesting way through a mutual parent and it reminded me how small this work is that we

do. Yeah, it's kind of crazy. Yes.

Yeah. And then I got to meet you in person at a lovely conference you're at.

And so I thought, gosh, Diane would be a great person just to visit with because you are a [00:01:00] massive wealth of knowledge. You are a licensed clinical social worker and I love that, right? We social

workers. We're the best.

So I'm gonna let you introduce yourself a little bit and then let's, we'll dig

into it.

All right, that's the hardest part, the introduction part. So, cause I never know like where to start and what to say. So maybe, maybe I'll do highlights. Um, and I'll start something you'll maybe be interested in, in, um, I think I'm like fourth or fifth grade I read a book about Jane Addams and decided to become a social worker.

And then I heard there was a, um, Jane Addams School of Social Work in Chicago, and I did not live in Illinois, and I'm like, I'm going there, and I actually did. Um, I became a school social worker right away because , [00:02:00] you got paid if you became a school social worker for your internship, and the other internships didn't.

So I'm like, all right, I'm gonna be a school situ, a social worker. And I did that for a while. Schools are hard for me. Um, and now I work with schools all the time. I've had school meetings every day this week, which is kind of why I need to take deep breaths. I, so I've been a school social worker. I've worked in agencies kind of as their disability person.

Um, at, because I started with disabilities, then I focused on supporting autistic individuals. And at some point became a board certified behavior analyst because all my clients were getting in trouble or kicked out of school or fired from jobs because of challenging behavior. So I thought, all right, I want to know everything about behavior.

And I [00:03:00] had an undergraduate degree in behavioral psych because I was a kid and I didn't even check and they didn't have social worker when I, social work is a major when I went to my college, um, and then I worked as a BCBA and a social worker for about 15 years and only last year quit being a BCBA that, um, I toyed with the idea for years of quitting, even though, because I was a BCBA, all the, I always call them like good guy lawyers.

So the non profit attorneys would hire me to go do behavior assessments in Chicago for kids with, uh, trauma backgrounds because I'm a social worker, but I was a BCBA, so I was allowed to do these. So it made me sad not to be able to continue doing that work when I gave up my BCBA, but because [00:04:00] autistic adults were voicing their trauma that they received in the name of behavior interventions and ABA therapy, in good faith, I just couldn't continue as a BCBA.

So I quit that. Um, so I had this interest in autism and this interest in trauma, and that led me to be interested in, uh, PDA, the Demand Avoidance Profile of Autism, or, um, Pervasive or Persistent Drive for Autonomy, which some people call it. So it's this complex, high anxiety, autistic profile, and I started getting involved in that, and now I run a non profit.

that serves those people. And I have a book coming out in June on the topic. I'm so stressed about it. I hope it's okay. We'll see. It's going to be great. [00:05:00] I hope so. It's so stressful. So I just have a private practice and that's what I do, but I'm a social worker. I love it.

one of the reasons I want to, there's a lot of reasons I want to talk to you, but one of the reasons I want to talk to you about to talk to you is because The information around neurodivergent individuals is so limited.

Oh my gosh. So hard. And so, I know in my work for the last 20 years around trauma informed practices, and brain development, and mental health, we're always talking about how are kids wired. How are kids wired? And you can't fight physiology. And so the work that you're doing around neurodivergent youth and people and humans and all these things.

And then to dig into that with that specialized PDA piece. I just thought, gosh, Diane is someone I need to talk to because I, I'm, I am excited for your book. I think [00:06:00] when I'm talking and I'm training, there's there, it's really limited. It's really limited to talk about neurodivergence and we're seeing more neurodivergence.

Absolutely. Absolutely. And even trauma community, as you said, like struggles with it. I, I gave some feedback to the conference. We were both. at that it was so great and being trauma focused, but it wasn't really neurodivergent friendly. And there, um, which I don't know if they got, but it, it's hard because it, the world is not set up for different kinds of brains.

And as some people say, that's what causes Disability.

Interesting. Yeah. What do you

mean? You know, some people say, you know, there's different brains, but the problems are caused [00:07:00] not because there's different brains, but because all our systems, especially education and the workforce. is set up for the majority of brains.

One kind, this neurotypical brain. Yeah. And, um, it's, it's a problem. And the

disconnect from that is what causes that disability. Absolutely. I always think people with neurodivergent brains have superpowers. Right. We're so lucky that we get to see the gifts that they have and those gifts don't fit into a box.

They don't. And I think we're seeing, especially post pandemic, those education systems, right? We're seeing bigger gaps in development. We're seeing kids who have more sensory processing stuff. We're seeing more

autism. And anxiety, anxiety from, from those years. Absolutely. And some programs think they're outside the [00:08:00] box, but they're just in a different box.

Got it. Yeah. So, um, we're seeing more and more and just with the nervous system too, which I know like you're so interested in to all the kids that are getting in trouble at school that I know across the country. Cause now I do consultations for families all over the country who have a complex autistic kid, mostly PDA.

Um, what's getting the kids in trouble is just that manifestation of their nervous system. Fight, flight, or freeze. That's behind all the problems. It sounds simple, but it manifests complex. Absolutely, absolutely, I, um, yep, and not being, and what happens too is these complicated I don't know if this is of interest, but it's of interest to me.

But, you know, they [00:09:00] just want to do so well. Like we, we give so often groups of people like this bad rap, like they're unmotivated, they're not trying. And we have, I work with so many families that their kids went so hard to please and do well. Like they'll go to school, they'll go to school, they'll go to school, they'll go to school, they'll do great.

Then they wake up one morning, they just can't do it. They can't do it one more time. And they don't go to school because the stress. They're so stretched. Yep. To the max. And they just can't do it. They can pretend, they can max. mask, they can hold it together until they can't, until

they can. So will you just for the normal lay person, me included, talk to me about PDA?

This landed on my radar this summer and I was

mind blown. It is mind blowing, I think, too. And, [00:10:00] um, so in the 1980s in the UK, um, one psychologist who was doing tons and tons of, um, psychological evaluations, she noticed a subgroup of autistic kids who were different than other autistic kids because she was doing children, but very much like each other.

And one of the things that stood out was that they avoided demands. And she named it pathological demand avoidance. She chose the word pathological on purpose. not knowing it would cause all kinds of problems later, because she wanted people to know they couldn't help it. It wasn't intentional. So she had the logical demand avoidance.

And these kids were creative and [00:11:00] imaginative and they understood kind of the social landscape. enough to fake it. They knew what was kind of expected of them, and they used often this knowledge to avoid or escape demands, you know, kind of depreciation or excuses or abstraction instead of blatantly, you know, saying, no, I won't do it.

Um, they didn't, um, really care or see hierarchy or age differences, so they didn't think a principal school should be treated differently than their peer. They're very socially motivated. They had this strong need for autonomy, so they kind of needed to do things their way, and they couldn't do things that were demanded of them, or if the expectations got so [00:12:00] high, They couldn't perform, and sometimes even their own expectations, things they really wanted to do or wanted to go well, just the pressure and the anxiety was so high, like birthdays or holidays, that they couldn't handle it, or they'd want to go to a party and they'd get all dressed and they'd obsess what they're buying the other kid for a present, and then they'd get to the door and not be able to go.

So, um, there was a lot of that and a lot of need for control because for me, whenever I see people in need control, I think, all right, they're anxious because anxiety, um, the only thing that makes anxiety go down is being controlling. So they had all these shared characteristics and then in the UK, they started talking about it over the next couple of decades, there were some books, um, Ruth Fidler and Phil Christie wrote Understanding Pathological Demand, Avoidance and Children.[00:13:00]

I'm so bad at that. I shouldn't even guess at the date. So they wrote some books. Um, then there's a PDA society created in the UK and it kind of stayed in the UK and then started passing through Europe, this understanding of PDA, but as a profile of autism, so it's not separate than autism. In Australia, there became more awareness.

Just nothing really blew over to the U. S. Um, in not, uh, 2020, I held the first American conference, March 2020. So that time probably rings a bell. It was the week before the, the shutdown. We got speakers from the UK on the last flights out. Oh my goodness. Yeah, but we had 165 parents. kind of come a week before the pandemic to Chicago to attend the first conference, and there was not a dry eye in the house in [00:14:00] part because kids who fit the PDA profile don't respond to traditional autistic supports and interventions.

There's like a one size fits all kind of approach to supporting and educating autistic students. It's very routine and, and structure based on rewards and consequences. And that not only doesn't work for our kids, it backfires and makes things worse. And then unfortunately, what happens is the parents are blamed and told they just need to be stricter and more consistent.

Uh, and so these parents got to be in a room with other parents who had been blamed, been told to do the wrong things. Yeah, and it felt so good. So in March, we'll have the fifth annual conference and every year gets [00:15:00] bigger, which is really exciting. And parents are, you know, still getting blamed. And, um, when writing to truancy letter letters this week, because, um, And sometimes the kids hold it together in school, which is also characteristic of this population.

Not always, but some. If they can, they hold it together and then they fall apart at home. So then when parents talk to the school, the school says, I don't know, he's perfect here. Must be a home problem.

That disconnect, right? I think some of the stuff that you're saying is so important for seeing the holistic person, first of all, and holistic through time, not just school and home, like we can't separate those.

These kids are wired. these ways and their stress response system is going to land in certain ways in a calm or regulated way or a fearful way where they [00:16:00] keep it together and hold out so they don't get in trouble and then boom and that rubber

band snaps. Right. Absolutely. And, you know, and still in this day and age, we isolate people when they're having, you know, behavioral responses.

When they need co regulation, they need other humans. And we send kids out in the hall, even to timeout rooms. Yeah, or to the room at home when they need people, people to co regulate them.

I think there's, there's so much in what you're talking about to unpack. One, blaming of parents. We have to stop doing that,

right?

And judging and blaming.

Yep. We also have to stop blaming teachers. We didn't talk about that, but we're, we're talking about a system that was built. a long time ago, that is not serving our kids in all the best ways right now. And so if we're working together to educate those systems, that means [00:17:00] how do we look at the individual, you know, how do we look at each kid meeting their needs, those things.

I love that you're bringing families together, and I'm sure they feel so validated. Like, I'm not

crazy anymore. Right. Right, absolutely. It's a beautiful thing to see. Yeah, I was planning the schedule and I was thinking about doing this event late afternoon, Friday afternoon, and I said to one of my, uh, staff personnel to, um, we all do this like part time.

Who's, uh, she's a parent. She's like, I'm like, Oh, I have to take that off the schedule. I can't do something like The last hour on Friday. She's like, no, no, you don't get it. Like parents don't want to leave this conference. Like different. Yeah. I'm like, Oh, yeah.

and then we're talking about shifting from these traditional autism.

We do BCBA, ABA therapy, consequences and rewards structure, all of that. to this different way of [00:18:00] being. What is the one thing you think would be, I mean there's a million, but pick one, Diane. Or maybe two. Okay. It would be like some broad strokes that would be helpful in shifting those systems. What are some things educators can just helpful to know, to do?

Is relationship important?

Relationship is key. Um, One of the things, the first thing, that came to mind when, when you were asking is not to make things worse. Sometimes you won't be able to make things better, but it's really easy to make things worse. And a lot of our practices make things worse. You've got a kid who's escalating.

Their nervous system, you know, is just losing regulation. And then we come into the situation and we give [00:19:00] demands, we threaten consequences, we remind them of expectations, all of these things, we get close to them, we get in their Because we talk about like we keep talking right until they, they like lose control and I go into schools all the time and I think, oh, that just didn't have to happen.

Didn't have to happen. And in part. is because we only talk about that the kids have a nervous system if the school gets that far. We never talk about the adult has a nervous system too. So, so they're teetering on fight or flight or freeze. They're sensing threat and then they're losing their, their regulation.

So they can't really make great judgment on, um, you know, kind of what's happening or imminent danger or any of that because their nervous system isn't in a good place. But if we can just not make things worse, if we can just [00:20:00] give, like, time, space, make ourselves, um, like, smaller and a little presence and just empathize and listen, show we understand, makes a huge difference.

Love that.

I think those words are so powerful. Don't make things worse. Sometimes we want to fix

everything, right?

And this isn't necessarily fixable. This is survivable. How do we, how do we work with this wiring in a system that's not set up for working with this wiring?

Right. And my joke is always that.

Doing nothing is the hardest thing for us to do. It's so true. So much easier to jump in and take control because we're anxious and do others, but just to like not do anything, like wait. That's so

funny. Wait it out. And just be.

Right. Just be. Be [00:21:00] there. Human beings,

not human

doings. Right. Exactly. Yeah. I love this.

I like that. Human beings, not human doings. I'd never heard that. I like that. Really?

Oh, it's good. Put that in your cap because.

I'm going to. I'm writing it

down. It's a beautiful, it's a beautiful intervention. It's a beautiful strategy for just, you know, no one on the planet says we're human doings.

Everyone says we're human beings. But being is one of the hardest things to do.

It is. Being is. It is. It is. And often, like, people go into education or helping professions. We, we are doers. We want to fix things. And the power

of being with, that is that whole piece of they need people, they need humans, we need co regulation.

I often tell teachers we can't self regulate until we've been co regulated. And even as adults we need co regulation.

Absolutely. [00:22:00] And we scare kids in our talk of independence because we make it sound like, you know, like everyone has to do everything alone, where we're really interdependent. We need people, but we scare them.

Love that. But absolutely, we just need to be. And that's what we, we need. I say sometimes to teachers like, I know you think you have to tell him the rules, but you don't. He knows it. You don't have to remind him not to swear in school. He knows that. He's not swearing because he forgot that's the rule.

Right, right.

That's the other piece. The, the behavior is not a result of a lack of understanding of rules. It's the behavior is because the stress response system is so activated.

Right, right. The behavior as Russ Green says, it's just the sign or a signal that there's a problem. Right. It's not the problem.

Love that. So I want to [00:23:00] talk about two things. One, let's talk about this upcoming conference. So, how do people find you, get registered, come and see it, the whole nine yards?

Yeah, you think I would know all this too. Um, so we When the pandemic started a week after the conference in 2020, I thought, all right, I have a little extra time.

So I created a website because I wanted parents to have something to show people like, look, this is a real thing. It has a website. So now the website's better than the one I created then, but um, going to the PDA North America website is conference information and the links. Every year we've done a little different.

We, um, or differently, it's an adverb. Um, so there's a virtual, uh, like you can attend virtually on [00:24:00] March 6th and 7th, or you can attend in person on 7th and 8th. So that's hybrid. So we have speakers, we have small group discussions, we have a few adults who identify as PDA presenting, which was so helpful for parents to, to hear them to, I've learned so much.

Um, and it's great. And it's like, you get that connection. I want people to come in person, but I realized life is so much more. Not that easy. So it's just a great way to learn. And we're talking about co regulation and declarative language. Um, our keynote is Linda Murphy. He wrote both those handbooks and it's going to be great.

It's going to be

great. I think the connection piece is so hard. Oftentimes you and I are a lot the same as consultants and you're meeting with [00:25:00] people who are in the worst of the worst, right? Like it's ever going to get better. They don't think that it's ever going to change. They feel all alone and coming to a conference like that where you're like, Oh my gosh, these are my people.

Right. It just, you feel it in the room. It's so nice.

It changes nervous systems.

It does, right, right, right. Yes, it changes nervous system. Oh, see, and I need to bring that up. Thank you for reminding me that. It does. You can feel it and you feel the change in the

nervous system. And the people in that room are seeking co regulation.

They're seeking people to understand their journey. And you don't have to have that when you're with your people. It's just an underscore of like, this is the life I have. This is what I've been blamed for. I'm here to learn more. Thank you for also being on this journey with

me. Right. It's so healing.

It's just so healing.

Now, I want to chat about this book that you're so excited about, which we're [00:26:00] all excited. Here's how I feel about books, Diane, books are about your journey. Like you have so much knowledge that you have, you're ready to share with the world and that's what your book is. And we're all just waiting, please.

We're thirsty for what you have to say. So when, when do

we, you said summer. Yeah, June. It comes out in June. They're pre ordering it now on Amazon now, and supposedly like a lot of pre orders are good because that does something later with, I don't understand any of it, but, um, yes, it comes out in June. I wrote it with Ruth Fidler, who actually knows how to write books, which is great.

She's written many on PDA. So, it's not something I could have done on my own. It's hard to write a book. And it can't cover everything. So that's what like haunts me in the middle of the night. Like, um, we didn't say this. [00:27:00] We didn't, we didn't touch that. That kind of stuff. That's book two. Maybe, maybe. And then it still will happen.

There's like all, everything's always evolving and there's such different ways of thinking about things, but hopefully, hopefully it's going to help because it's, it's an American book because what's happened too is since all the books are from the UK or Australia, American parents and educators have to read them and think, all right, well, this doesn't apply.

To me, the healthcare system in the UK, or the education system, or just all the spelling and terminology and, you know. Um, so this is an American book, so I'm hoping that will give comfort and feel better to American families. Um, you know, I'm nervous because one book can't fit the needs of every single person and, but it's going to be.

I have time to like. regulate my nervous [00:28:00] system before it comes out. The

people that need to read this book will read this book. It will land exactly where it needs to land, Diane.

I love it. I learned so much from your attitude, Stacey. They're just so helpful. Every time I do a talk now, I think to myself, this audience, they're adult learners.

They're responsible for their own learning. So it takes pressure off me. So isn't that helpful? It's so helpful. I have that self talk every presentation. Oh, I

love that. I love that. Well, I don't want to take too much of your time. I could talk for hours with you. I appreciate you. I appreciate your journey.

And I appreciate you really like digging into the niche of what this is because it answers. For some people, a lot of things. The, the parent that brought us together. Yeah. Huge

answer. Right, right. It just finally makes sense where all these things didn't make sense before. And, and I'm just so privileged to be [00:29:00] part of that for families.

It's such an honor that we get to work with these beautiful humans, isn't it? Oh

my gosh, I, I am happy every day. Like, I keep thinking I am one of those lucky people. I wake up every morning like excited about what the day is going to bring. And I love that. I love like Sunday nights. I'm like excited, you know, for Monday morning.

So I, I am really, um, privileged. And I'm privileged to have met you.

Same. This won't be the last. We'll have more chitty chats. I have

no doubt. All right. That is a deal. Cause yeah, there's so much work to be done. I

agree. Thank you. Thanks for taking the time. I appreciate it. And I hope you get to breathe some more today and get a little bit of hit of sunshine and vitamin D.

That sounds

good. It does not look very sunshiny, but it's not raining or snowing at the moment. So I'm grateful. I

love that. All right. Take care, Diane. so much. Bye. Bye. [00:30:00]