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Understanding Pathological Demand Avoidance (PDA) S7E21
Pathological Demand Avoidance (PDA) Episode 2128th May 2024 • The Autism Dad • Rob Gorski
00:00:00 00:32:38

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In this episode, Rob Gorski is joined by Amber Arrington from Autism Savvy. They delve into the topic of Pathological Demand Avoidance (PDA), an often misunderstood profile within the autism spectrum. Amber shares her personal experiences as a mother of three autistic children, including a daughter who exhibits PDA traits. The discussion covers the challenges of navigating PDA, strategies for support, and the importance of educating both parents and educators.

Takeaways

  • Pathological demand avoidance (PDA) is a profile of autism that is not officially recognized in the United States but is more widely recognized in the UK and Australia.
  • Children with PDA exhibit a persistent drive for autonomy and have strong reactions to perceived demands, often responding with resistance or refusal.
  • Parents of children with PDA face challenges in navigating educational settings and advocating for accommodations.
  • Learning and understanding PDA can help parents develop strategies to support their children and create a more inclusive environment.

Guest Bio:

Amber Arrington is the founder of Autism Savvy, where she supports parents navigating new autism diagnoses for their children. With over 20 years of experience and as a mother of three autistic children, Amber offers a unique perspective on the challenges and strategies involved in raising autistic kids. Her work focuses on empowering parents with knowledge and resources, especially in the critical early stages of diagnosis.

Connect with Amber at https://autismsavvy.com

About Rob Gorski and The Autism Dad podcast:

Rob Gorski is a single Dad to three amazing autistic boys and the Founder and CEO of The Autism Dad, LLC. Multiple award-winning blogger, podcaster, content creator, social media influencer, and respected public figure for the last 15 years.

Connect with Rob: theautismdad.link

Mentioned in this episode:

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Transcripts

::

Rob Gorski

So, we're back, and Amber is here. She was on the show, earlier this year, and we're going to have a conversation about PDA, your pathological, pathological demand avoidance. I've been hearing a lot about it. I my kids have never been diagnosed. Although the more I learn about it, the more it's kind of like, I don't know, maybe, you know, but it's something that's very personal for you right now.

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Rob Gorski

So could you, could you take a segue and just kind of remind people who you are and, and, kind of a little bit about you and let's, let's kind of talk about what's going on.

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Amber Arrington

Okay, great. Well, Rob, it's so fun to be with you again. my name is Amber Arrington. I am with autism savvy. That's my company. And, I support parents navigating, diagnosis for their child. Like, especially in that new diagnosis phase. That's what I. That's where I love to support. But I have been doing this for 20 years.

::

Amber Arrington

So, like, you know, similar to you, I have an autistic son that's 20. But then I also have two autistic little daughters. That one is three and a half and one is five.

::

Rob Gorski

So so we talked a little bit before the show and then trying to work through like whatever was happening with technology because it was not our friend today. but you're kind of, you're, you're dealing with, what you think is pathological, pathological demand avoidance. And it's a real struggle. Can you kind of, can you kind of explain, like what your experiencing and, and, you know, if it's something that's easy to get diagnosed, is it something that like, how does this whole thing work?

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Amber Arrington

Okay, I'm going to do my best. I am no expert on PDA, but I've been immersing myself in it for the past six months. In particular, I probably first heard about it maybe a year and a half ago. But the thing with PDA and again, this is not public displays of affection. This is pathological demand avoidance. Some people more lovingly refer to it as persistent drive for autonomy, or pervasive drive for autonomy, I believe.

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Amber Arrington

I hope I'm getting that right. you know, it's it's this profile of autism that actually, technically cannot be diagnosed here in the United States. And if anybody wants to learn more about it, there's a website, it's PDA North America, because it is more widely recognized in, the UK. And I believe it's Australia where they are diagnosing it there.

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Amber Arrington

here, it's not in our DSM, so nobody can actually get a diagnosis for PDA in the United States at this point. yes, I was right. It's the United Kingdom and, Australia, where it is more widely recognized. So it's this it's this version of autism. And it does always at this point, it is always linked with autism.

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Amber Arrington

Like you're not going to get a PDA designation if you're not getting that autism diagnosis for your child or maybe for yourself. You know, I have six kids. I've been parenting for 20 years. I do not have a child quite like my three and a half year old autistic little girl who I do believe fits this PDA profile.

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Amber Arrington

So at this point, it's like once you learn about PDA and you feel like your child fits, that quite fits that criteria. You kind of can just lean into that, learn more about it, learn strategies for supporting it. That's what we have to work with at this point, because like I said, you can't get a diagnosis just for that here in the United States.

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Rob Gorski

You know, I didn't I didn't realize that actually, because there's there's people that I've talked to and I don't always know where people live, but there's a lot of people in the UK, there's a lot of people in Australia that, you know, are connected on the platform and whatever. And, and they talk about PDA like, like it was diagnosed like it's an official thing.

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Rob Gorski

I did not realize that you could not get that diagnosed here in the United States yet.

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Amber Arrington

That's. Yeah, that's my understanding. Like I said, it's not in the DSM, but people, the PDA kiddos can be this this profile where they don't fit the typical this is hilarious, but the typical mode for like they don't come across is typically autistic. And that is certainly the case for my little daughter. Like if if you met her.

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Amber Arrington

And I think even if I were to have her assessed again for autism at this point in time, she's been in therapy for almost two years already. At her young age, I don't think she'd meet criteria for autism necessarily, but she definitely meets the criteria for this PDA profile because it is this persistent drive for autonomy. It is these very strong no's.

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Amber Arrington

Any question, any perceived demand is going to be met with a no and with resistance. And that's just what it looks like on the surface.

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Rob Gorski

So so like what are like during your just day like when you're interacting with your daughter. Like what? What are some of the the things that you see? Because I think a lot of people will be like, well, you know, when kids learn to say no, they say no to everything, right? Like, what's the difference? And I mean, I understand there's one significant difference, but what's what's the difference?

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Amber Arrington

Yeah. Okay. I'll give you some examples. The first one is this no thing since you brought it up again. I remember when my five year old first started ABA and they would always her therapist would be like. And she refused appropriately. She said no, appropriately. And, you know, took her a long time to even learn to say no and use the word no.

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Amber Arrington

And I didn't know what they meant when they said appropriately until my baby started talking. And since she first started talking, it was never just a no no, thank you. No, I don't want that. It would always be an elevated, passionate no to anything. And always it would be like, no, I don't want that. Sorry. That's loud to your listeners.

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Rob Gorski

But it'll all be leveled out. You'll be fine.

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Amber Arrington

Okay. So really strong, passionate knows no to everything all the time. Okay. How it looks for my daughter is, She is going to resist daily tasks. She's going to resist getting dressed, you know, and then it's going to be like an if she chooses to get dressed, it needs to be this one dress. And we need to wear the same dress days in a row.

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Amber Arrington

It can only be the purple sparkly shoes. No other shoes if we can get shoes on at all. it has to be the pink socks. I buy five pairs of pink socks. At this point it has to be the pink plate and the pink spoon. It's like, hey, you know, what's your tummy hungry for? I want eggs, so I make the eggs.

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Amber Arrington

I put it on the pink plate, pink fork, put it on the table. But if I'm like, hey, okay, it's time to eat. She may be enthusiastic, like, yay, thank you. She may not. She may look at that. The very thing she asked me to make and say, this is disgusting and push it off the table like it's just this walking on eggshells.

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Amber Arrington

Very unpredictable. she has a person. So PDA kids tend to kind of fixate instead of on a toy. Like you won't find her lining up cars, for example. she has a person that she kind of is very enthusiastic about. It's me. Like, daddy can't say, I love you, okay? No, mommy loves me. Do you want daddy to help you get your milk?

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Amber Arrington

No, mommy. Do it like everything has to be. Mommy picks me up. Mommy helps me go potty. Mommy, mommy, mommy, mommy. And those are just some examples.

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Rob Gorski

It's exhausting.

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Amber Arrington

It's getting. It's getting pretty wild up. Yeah. For sure.

::

Rob Gorski

you know, it feels like so many of us have been on a struggle bus, and it's it's like we should just all just carpool together sometime because, like, there's there's so many, so many challenges that we face that sometimes just kind of pop up out of nowhere or you feel like, well, the autism diagnosis is like complicated enough.

::

Rob Gorski

But now it's like, you know, something else. And, and I would have assumed some of those things were sensory related, right? Because like my my youngest would be very he wasn't I bought and we've talked about this on a podcast before, but like hundreds and hundreds of pairs of socks over the years and he will pick out one.

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Rob Gorski

And those are the only ones that still wear even though they're identical to all the other ones in that package. He will find one that that feels okay and Will won't wear anything else. Right?

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Amber Arrington

And yeah.

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Rob Gorski

I always assumed that that was sensory. I think it is for him. But like what you're talking about is, is more like, it's more extreme. Really.

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Amber Arrington

Yeah. Because you could mistake that for a sensory thing. And maybe a piece of it is. Maybe I just don't get that she refuses to let me do her hair in the mornings now, and she has this long, beautiful brown hair that hangs in her face all day long. Will not let me pull it up anymore. Will not let me braid it.

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Amber Arrington

If by chance I do get it in a braid or something. If she's agreeable that day, the second she becomes distressed about anything, she's going to be pulling out that hair. That's called equalizing behavior. She's got to find a way to level herself off. If, for example, I want to take her out of the grocery cart because we're leaving the store, but she's not ready.

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Amber Arrington

But I have to do it anyway. She's going to pull out her hair to equalize, to have me not be above her. So a lot of this just has to do with that autonomy. And another really interesting piece is something. And I heard it on another podcast this morning. I didn't understand this behavior till today. So it's like this your child gets excited about something and you're excited because it's something they're excited about.

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Amber Arrington

My daughters obsessed with Disney Princess. She needs new clothes. I order her five Disney princess shirts and a bright pink dress because I know she loves those things. They come in the mail, I deliver them in front of her and I'm like, look what mommy got. You know? She hates them, doesn't want to wear them, refuses them. Well, why do they do that?

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Amber Arrington

They're doing that because they're perceiving a demand from you. When you show them the thing.

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Rob Gorski

Like reaction.

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Amber Arrington

They think, well, they're like, oh no, I have to wear this. I'm not I'm not into it. I'm not going to do it, you know? And so you learn, you end up learning these strategies about how you have to just kind of they call it strewing just lay some things out, don't draw any attention to it and let them discover it on their own terms.

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Rob Gorski

If it's a it's kind of like you're not going to tell me what to wear, I'm going to pick what I want to wear. So there's a guy, there's a guy on TikTok. I think it's TikTok. If I if I can find him again, I'll send it to you. But he he has PDA. Whether he's diagnosed. I don't know where he lives, but he was he was talking about how he's able to articulate what the experience is like for him.

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Rob Gorski

And so he's he's giving parents examples of, like, you know, if he left something on the floor, right. And they want him to pick it up and put it away instead of saying something like, Will you pick that up and put it away? Because he's going to be like, nope, not going to do that, right? Because he's going to avoid that demand.

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Rob Gorski

But if they phrase it in a certain way and I can't remember how how they phrased it. Yes. it changes the way that he receives that information. And then it's more like he has a choice. He's choosing to pick it up rather than being told to pick it up. So that makes sense.

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Amber Arrington

Yes, because the thing about PDA, PDA, they call it a nervous system disability. So this child or this person perceives threat in a way that we would be looking at and saying, that's ridiculous, you're overreacting, or we just don't understand what's going on inside their body at all, why they're suddenly reacting in a really elevated way. And we can't see why, because their brain flips into fight or flight or freeze or fun, I guess at the at the mere thought of a demand.

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Amber Arrington

They feel like there's a lion standing in front of them, and that's why they respond the way that they do.

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Rob Gorski

And so on the outside, it looks like you have like a discipline issue or you have, just like a petulant child who's not wanting to do something. And the reality is that they're reacting where they are because of the way that they're like receiving information and processing it. So. So you may be asking them, like, you give her the Disney princess stuff and it's there's like no strings attached, like it's a gift.

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Rob Gorski

Like you're doing something nice for it. Right? Because you love your daughter. She sees it as like like there's expectations you're going to have. Yeah, I'm going to have to put this stuff on. I might not want to put it on, or you're going to have to be excited or say thank you. I mean, like some type of of expectation that she perceives and, and so reacts to it in a way that is just wants nothing to do with it.

::

Amber Arrington

Totally. Yeah.

::

Rob Gorski

Like, like how do you how do you navigate some of that stuff? Because you would have to be handling situations in ways that make no sense or might seem contrary to to people on the outside. And I'm sure you get, you know, advice from people, you know, saying you should be doing this. I shouldn't be doing that. And maybe they're well-intentioned, I don't know.

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Rob Gorski

I think most of the time they are, but they just don't they don't understand it. Like, how do you how do you deal with that? It has to be, yeah. Frustrating probably isn't the right word.

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Amber Arrington

But you know what encourages me to keep trying to to navigate this despite any judgment and despite if people buy into it or not. Like there's clearly something different about the way this child navigates in this world. And what am I going to do, just be yelling at her all the time and frustrated all the time? I have to be willing to try new strategies.

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Amber Arrington

I have to be willing to keep learning. There's that. But I will sometimes post about her on my social media. Usually it's a B roll where you don't. You don't see your face, but like they'll be text over top and these ones tend to get a lot of engagement. And sometimes they'll be someone that crawls up into the comments and says something like that, like, well, we can't just keep, you know, catering to kids like this.

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Amber Arrington

What are they going to do when they get older? Right? But inevitably, there'll be some adult autistics that come up and say, I just wish I had that kind of support and accommodation when I was. Yeah. And that's what keeps me going to do whatever I need to do to figure this out for my kids.

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Rob Gorski

Well, there's still a lot of people out there that are like, you know, autism or ADHD or whatever, whatever diagnosis we're talking about. Like when I was a kid, we just, you know, farmhand or, you know, they. Yeah. Right. So there's there's going to be people that just aren't going to get it. And I think there's a generational thing too.

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Rob Gorski

e that goes on, it seems like:

::

Rob Gorski

And and in the 20 plus years that I've been doing this, prior to that, I never heard anything about it. So to me, I thought it was something that was new and I don't think it is, but it's something that people are talking about more, or at least we're starting to recognize it here in the United States. Maybe that's what it is because we're all we're like, yeah, advanced.

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Rob Gorski

But then we're behind in a lot of things. It's it's weird. but so let me let me ask you this with, with an inability to get diagnosed, at least in our understanding currently. Right. Maybe there's something down the line, but with an inability to get your daughter diagnosed with a condition that affects significantly the way you have to communicate and interact with her, how are you supposed to, how do you even begin to have accommodations at school or, or anything like that?

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Rob Gorski

Because you're kind of feeling your way through the dark with something that not everybody even buys into?

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Amber Arrington

Luckily, we're getting more and more resources to help in this area. I just listen to a podcast yesterday, where she brought on, I believe it was a therapist. And then like an IEP coach who have created a course for, I don't know if it's for school administrators or if it's for other, IEP coaches, but essentially they're laying out for schools and for teachers how we can address accommodating PD inside special education.

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Amber Arrington

So these things are starting to come to the forefront. And at this point, it's going to really be about the parent doing the learning and the parent bringing it to to the schools, to the staff, to the therapists and saying, look, this is what I think my child has. This is how it presents. These are ways we can support, like, can you get on board?

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Amber Arrington

For me, I've been able to connect with my daughter's bcba at her ABA based preschool, and luckily she's very receptive to learning and she's like, yep, send me the podcast, send me the handouts. Let's talk this through together. Let's learn together. So I mean, I just think it's about learning. Yeah, that's really cool. And I've already like the school where I'm sending my girls this next school year because it's going to be a different one.

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Amber Arrington

I hope I don't annoy their new, teacher, but I've sent her a few podcasts already. I'm just like, hey, so excited to work with you. I don't know if you know about PDA. Listen to this. My daughter has this and she's like, yep, I know about it. Excited to learn more. So I think the good ones, yes, the good ones that can stay open minded doctors, therapists, professionals will listen.

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Amber Arrington

And we just have to do our due diligence to know what to teach them.

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Rob Gorski

That's, that's, that's very encouraging for me because when my kids were little, it was it was so hard to get people on board with IEPs, especially my my oldest. This was, you know, 20 something years ago, it was, you know, they would get an autism diagnosis and then you'd have to get the educational diagnosis. And then it was like there were, you know, sometimes you felt like you were you were wanting accommodations because you wanted special treatment for your kid.

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Rob Gorski

And I remember hearing that before with with my kids. Well, you just want him to have special treatment I don't really like. I want him to have access to an education just like everybody else does. And in order for him to, have that access, he needs accommodations. Right? So, we don't all have the same set of tools and resources available to us, right?

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Rob Gorski

Everybody's different. We all have strengths and weaknesses and and kids need accommodations. But it's nice to know that there are people who are more forward thinking and and more open to things that are that we're becoming more aware of so that, like, daughter can have access to that education.

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Amber Arrington

Well, and the truth the truth is that I'm hearing a lot of is a lot of PDA. Kids are not making it in public schools. It's just not working out for them. Think of how many demands are there and compliance based, and they don't respond as well to ABA therapies or compliance based. Anything. So a lot of parents end up pulling out their kids when they hit burnout and homeschooling them or unschooling them, and that's what they just have to do if they are privileged enough to be able to do that.

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Rob Gorski

So what is what is like? What is the goal then? you know, for like, you know, autism or ADHD or whatever, like we have, we have goals for kids, what with PDA, like what are you what are you working towards with her, if that makes sense.

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Amber Arrington

Well, if you're if you have a kid that is already hit burnout, they're not doing well in school. They're not doing well in home. You don't have both parents on the same page in the home. You know, one is yelling in authority, parenting them. And like their nervous system is always like at first, I think the goal becomes getting them out of burnout, which from what I understand, comes from learning how to lower demands and where you can and using different parenting strategies.

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Amber Arrington

I think the goal is to set them up for a world where they can, access life on their own terms as much as possible. And I do think the older they get, the more in control of their life they become as teenagers and adults, that they can feel more in control of everything. And they can.

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Rob Gorski

Or they can navigate it in a way that feeds them information, the way that they need to receive it. You know what I mean? Because like, if you if you think about it like when we get to know people, like when you first meet somebody, communication can be a challenge, right? Because you don't know how people respond to whatever.

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Rob Gorski

And I could see that being on a very basic level, very similar, you know, like, okay, well, we know that in order to, you know, get something across or in order to connect, communicate, whatever effectively, we need to word things differently, or it needs to be phrase in a way that is not, as demanding, I guess, if that makes sense.

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Rob Gorski

Yeah. And that seems pretty reasonable because we have to talk to people differently. I have three different languages for my kids. I had to talk to each one of them in a different way. Yes.

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Amber Arrington

And totally.

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Rob Gorski

It's exhausting. But I have found that it's just it's like my tone has to be a little bit different, or the words that I choose have to be different. Like some, some of my kids, I have to be very direct, like very like literally precise about exactly what I'm going to be doing. Or they freak out, and others, I could just have like a relatively like casual conversation with to get my point across.

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Rob Gorski

And they take it and they go, I would, I would think that as, as as we get older and we learn to interact with people, and people learn to interact with us, that we just sort of cater the way that we communicate in a way that we find to be most effective, because people are going to want their communication with her to be effective.

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Rob Gorski

Otherwise, what's the point? So they kind of cater to what her needs are and I think as she gets older and maybe has a better understanding, you know, like like, because I think one of the things that this kid I was telling you about on TikTok that was articulating once he's at that age where he better understands why he does things the way he does or why he reacts what he does.

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Rob Gorski

He says, like, look, I understand that, like, there really wasn't a demand on me when they were asking me this. It was just pick something up that I put down, like, I put it there. I shouldn't have put it there. But like his brain, like he just he just reacted to it and it's so like you, I think maybe they become a little more aware and then and then maybe they can become a little more tolerant of things and they can learn that not not everything is meant to be taken the way that it's directly said, I guess, you know, I don't know.

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Amber Arrington

It's so.

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Rob Gorski

New.

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Amber Arrington

Well, I don't I don't really know either. And that and that's the tricky thing because it's like, golly, we are making all these accommodations for these kids all day long, for years and years and years. And like, when did they learn to be flexible and accommodate other people in their lives? Because at some point that's going to have to happen, too.

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Amber Arrington

Yeah.

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Rob Gorski

And that's the that is definitely you're absolutely right that that's sort of the approach I've taken with my kids, just with the autism and the ADHD and the sensory stuff. It's like, guys, you know, the world needs to be accommodating to you to an extent, but you also need to be able to interact in this world, even if you can, even if you have to, like, do it, then go home and crash, right?

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Rob Gorski

Like or limited or whatever. You have to be able to navigate real life in a world of people who don't care what's going on with you, they just need you to do something well.

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Amber Arrington

And I think I told you, I thought I had found a really nice equilibrium with this daughter of mine that I've been talking about. she. Things seem to be going really well for a spell, and I thought it was because we were making so many, you know, accommodations at home. Very flexible. We're working with her team at school to to do the same, and things generally seem to be going pretty smoothly.

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Amber Arrington

But for the past few weeks, I feel like there's been a flare up of new behaviors. I don't know how to navigate. And, I'm trying all the tricks. I know, but I'm, like, running out of my toolbox of strategies and I'm not understanding some of the things yet. Maybe my mindset is not yet in the right place all the time.

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Amber Arrington

Maybe my energy isn't and I need. I feel like I need some help, and I and I told you, I just, signed up for a course, a PDA parenting course that starts in a week and a half. And I'm so excited to just learn what I can and see new ways that I might be able to support her.

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Amber Arrington

And we as a family can because it makes the family like a minefield. You step wrong and like, wow, so we need some help. So I'm not above going to get help. I know I like to say I know a little bit about a lot when it comes to autism. I know more than the average person for sure.

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Amber Arrington

I know a little bit about a lot, but, there's a lot I don't know still. So, you know, I'm just going to go learn. Yeah.

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Rob Gorski

I, yeah, you know, I can relate to that on so many levels. Not the same PDA stuff, but just with my kids over the years, like, it's just it's tough. And what I think is really what I think is really nice about the way that you're approaching this is it's not the onus isn't on your daughter to change.

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Rob Gorski

You know, you're looking to educate yourself as a parent so that you could be a better support for her, better understand and all that kind of stuff. And there's I think sometimes we get caught up in wanting to like, like people who can watch this, like air quotes. I don't where the cameras hear this air quotes like fix our kids or whatever.

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Rob Gorski

And it's not it's not about that, right. Sometimes it's it's we need to grow and we need to learn in order to meet them where they're at and then help them, you know, to grow, to be whoever it is that they're meant to be ultimately, you know, so I applaud you for doing that. I think that's, that's pretty incredible.

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Amber Arrington

This is the thing I think that learning these strategies to support our kids, so to speak, we can use them with all of our kids. Yeah. You know, we can learn how we can look ourselves in the face and realize the things that we do, that we make important, that don't have to be important, that causes unnecessary stress on ourselves and all of our kids.

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Amber Arrington

I don't know. I think that this can be helpful across the board.

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Rob Gorski

Well, it's sort of like ABA, right? They use ABA in business and sports, all kinds of things, because it's applicable to a lot of different things. we only really think about it as it applies to autism, but they've been using it for all kinds of stuff for a really long time. yeah. You know, you can learn, you can learn a skill that not only will benefit her, but it will also benefit everybody else.

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Rob Gorski

Right? Because it's another tool in your toolbox. And I think that's that's really cool. And, you know, we talked about before, when you go through this course, like coming back on and having another conversation about, you know, what you've learned and, like, maybe gained like a better understanding of the whole PDA dynamic and how how it works and how you can help her, because I know there's a lot of people have been asking a lot of questions, and I just have not I have no experience with this.

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Rob Gorski

This is really the first conversation.

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Amber Arrington

Yeah. I'd love to.

::

Rob Gorski

about this.

::

Amber Arrington

Well, welcome to it. And, there's it's it's really interesting and and it's certainly buzzing on social media. there's a few buzzing things. PDAs, one of them. but yeah, I will definitely would love to come back and talk about what I learned and how things are going. You know, whenever you want to help me. Cool.

::

Rob Gorski

Well, I really appreciate your time. thank you. And the patients navigating all this craziness when we couldn't get everything to work. So thank you very, very much. And, I look forward and I look forward. Right? Yeah. Thank you very much. And I look forward to, to hearing how this goes.

::

Amber Arrington

Well, I enjoyed my time with you today, Rob. I appreciate you always.

::

Rob Gorski

And how can people find you real quick?

::

Amber Arrington

They can follow me on Instagram or TikTok at Autism Savvy or at Autism savvy.com.

::

Rob Gorski

Perfect. All right. Thanks a lot.

::

Amber Arrington

Thanks, Rob.

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