303: Navigating PDA and Selective Mutism

Show Notes:

In this episode of SLP Coffee Talk, Hallie chats with Libby Hill, a consultant speech-language pathologist with over 40 years of experience, about the fascinating connection between pathological demand avoidance (PDA) and selective mutism. Libby shares why students with PDA aren’t just being “naughty,” how their brilliant yet challenging language profiles can fool us into expecting too much, and why creating the right environment is everything. You’ll learn practical strategies like the “projects on pause folder” and why traditional therapy goals need to flip the script to focus on what the team needs to do, not what the student needs to fix. Whether you’re hearing about PDA for the first time or looking to deepen your understanding, this episode reminds us that sometimes the best therapy plan is building rapport and following the student’s lead.​​​​​​​​​​​​​​​​

Here's what we learned:

  • PDA and selective mutism? They’re more connected than you think.
  • Getting the environment right beats direct intervention every time.
  • Flexibility and choice look different for every student.
  • Try the “projects on pause folder” – it removes pressure and sparks curiosity.
  • Build rapport without an agenda, and watch progress happen.
  • The right diagnosis matters – wrong strategies can do more harm than good.​​​​​​​​​​​​​​​​

RESOURCES

📘✨ Grab your copy of The Secondary SLP Roadmap here! https://www.speechtimefunpd.com/stf-book 

Learn more about Libby Hill: 

Learn more about Hallie Sherman  and SLP Elevate: 

JOKE OF THE WEEK:

Q: Why did the student bring a ladder to speech?

A: They wanted to work on their high frequency words.

Where We Can Connect: 

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TRANSCRIPT

00:00:00 Hallie: Hey there SLP friends, it is Hallie here, popping in with the best news ever. My new book, Secondary SLP Roadmap is officially available. If you've ever wished for a clear, practical guide for working with middle and high school students, this is it. It is packed with real stories, ready to use strategies and tools you can use right away. Grab your copy now, check the link in the show notes or search Secondary SLP Roadmap on Amazon. And then of course, please do me a favor. When you are reading it, snap a picture and tag me on Instagram @speechtimefun. I love seeing where you're diving in. The speech room, the couch, waiting in a doctor's waiting room, all the places. All right, ready? Go grab your copy and let's make secondary speech feel doable and fun.

00:00:57 Hallie: Welcome to SLP Coffee Talk, the podcast designed exclusively for speech language pathologists who work with older students, grades 4 through 12. I am your host, Hallie Sherman, your SLP behind Speech Time Fun, the Speech Retreat Conference, and the SLP Elevate Membership. And I'm thrilled to bring you conversations, strategies, and insights that will give you the jolt of inspiration that you need. Whether you're tuning in during your morning commute, on a break in between sessions, or even during a well-deserved relaxation time. I am here for you each and every week. Let's do this SLPs.

00:01:37 Hallie: Hey, hey, and welcome to another episode of SLP Coffee Talk. Today we're going to be talking all about selective mutism, pathological demand avoidance, aka, PDA. And I know that you are going to love today's Libby Hill, who is a consultant speech-label pathologist with over 40 years experience. And yes, she still loves her job and has tons of experience in this area. So Libby, welcome to the show. 

00:02:03 Libby: Thank you very much. Great to be here.

00:02:06 Hallie: Tell everyone listening a little bit more about yourself and your journey to what you are doing today. 

00:02:12 Libby: Well, I've been a speech and language therapist for a very long time and I've always loved working with things that get me thinking, things where there's a problem to be solved or something that's more complicated. So I've got ADHD, so I like to go down the rabbit hole of research about the things that I really find interesting and become passionate about. And it was just over 10 years ago that I was asked to do a program called Born Naughty? for Channel 4 over here in the UK. 

00:02:42 Libby: And the idea was that we would assess these children who… were naughty, basically. That was the label they'd be given. But were they just naughty or was there something behind it? And I met one girl, she was actually the last girl that we met of all the children that we assessed for the series. And I knew that there was something completely different about her, but I wasn't sure what. And so we decided that she did have pathological demand avoidance. And she was particularly tricky to assess, but once you got your style right, she was a pussycat. 

00:03:20 Libby: And certainly we were able to make a big difference to her life and the support that we could give her because what children with PDA need are different strategies to children with autism with extreme demand avoidance, for instance. So she needed flexibility. She needed not no routine, but a flexible routine. She needed to be able to collaborate with us. She needed to make decisions for herself. And she needed much more freedom than the typical school system allows. I'm sure it's the same where you are, but it's very much compliance based. And if you are a child or a young person who can't cope with demands, you know, school can be hell on earth and can leave children so traumatized. 

00:04:14 Libby: So that was about 11 years ago that I met her. And sad to say, it wasn't my prowess as a speech and language therapist, particularly that got me a lot of referrals afterwards. It was the fact that I promised that I would go outside and play with the bubble wand with her. And it started to tip it down with rain. And I still went outside. And you can tell I've had my hair done first thing in the morning. And then of course my hair is flat to my head and the water is just dripping off me. 

00:04:43 Libby: So I got the referrals initially because they thought, if she's prepared to keep her promise like that and look silly on camera, then obviously we'll entrust our child with her. But I've been so lucky since then to have been involved in research groups, PDA professional groups, and I'm on the International Complex Autism Special Interest Group as well. So it opened a lot of doors for me and allowed me to really explore this extremely complex area of work. 

00:05:16 Hallie: I love that. I love it that something so simple as going outside and playing has shaped your career since that moment. I love that so, so much. For those who are not as familiar with what PDA is and and how it is different or similar to selective mutism, what can you share a little bit more about that? 

00:05:38 Libby: Well, PDA is not in the diagnostic manuals yet. And certainly a couple of years ago, if I'd been talking to an American audience about PDA, they'd have said, no, we don't recognize that here. Now we've got PDA North America with Diane, who's doing lots and lots and lots of work. So the American influence will really help us drive the movement forwards. But it's considered, at present, to be a profile on the autistic continuum. But it's different to typical autism because they are ruled by this overriding need to avoid any form of demand. Not just our demands, it could be their own demands. And not just explicit demands, it could be implied demands. They've decided it was a demand. So you've said, “Oh, it's stopped raining,” when they're on their Xbox, and they take that as the demand to stop playing Xbox and go outside. So that would trigger it. 

00:06:41 Libby: But it was based upon the work of somebody called Elizabeth Newson, who was an English professor working in our Midlands area. And she came across, in the 1980s, a group of children who they came for neurodevelopmental assessment, but she actually, at that point, didn't feel that they were autistic. But she felt that they got these set of criteria in common. So resisting everyday demands. They didn't see any authority. So she called that no sense of self. They were just different. So she actually called it a pervasive developmental disorder. And she sort of locked them in a group. 

00:07:20 Libby: And since then, we've built upon her descriptors. We have altered her descriptors a little. So she felt, from a speech and language therapy point of view, that they had language delay, but with a good degree of catch up. I'm not finding that. And we're now thinking that they have demand avoidance from day dot. So that's something that's definitely different from her. 

00:07:47 Libby: The main thing is they are resisting demands using social techniques. So it's not just a no or just a direct avoidance. They'll use social techniques because these children and young people have got a really good surface sociability. So if you use something like Garcia-Winner's Social Thinking classifications, my clinical research shows that they’re usually nuance challenged social communicators. So you've really got to look, to realize that they are autistic because they can talk the talk. It's just the walking the walk that might give them a few issues there. 

00:08:28 Libby: They're different to typical autistic children with demand avoidance because that's logical. So if you look at why they're avoiding something, it's because they don't want to do it. They're finding it aversive. Their sensory overload hits. Their linguistic challenges are there. So you actually look, it's logical. With PDA, it's often illogical avoidance. And it's just so fascinating. But if we look at demand avoidance using a polyvagal lens, so if we look at the work of Stephen Porges, and we look at when new reception is triggered, then demand avoidance per se usually results in the fight or the flight, which isn't necessarily fisticuffs fighting, but it could be. It's usually verbal to be honest with a PDA. And the flight isn't necessarily running away, but it could be. 

00:09:31 Libby: So that's what we tend to see with demand avoidance. Whereas typically autistic children, their anxiety is triggered by the neuroception and they go to fight and flight. With a PDA, there's this extra bit, it's almost like the perception of the demand triggers the anxiety, which triggers the neuroception. But obviously the other things in that, what is triggered with the neural responses. So you have the freeze and you have the fawn. So the freeze becomes the selective mutism and the fawn is the masking and your low profile selective mutism. 

00:10:11 Libby: So in actual fact, PDA and selective mutism go hand in hand and many, many PDAs, while they are brilliant speakers, will also have selective mutism at some point in their life and then may go on to have reactive mutism where, you know, it's the situation that's triggering it, but they don't know when it's going to happen or where it's going to happen. So the two, you know, sounds, is that when you say – actually there's two things that I'm interested in. And people might say, well, two things, is that not too many if you're really specializing? But they go together so well. 

00:10:51 Hallie: So fascinating. Cause I was not thinking that they were together at all. As you're explaining PDA, I'm like, okay, where does selective mutism fit into all this? Like, are we going to… like do I have to whole pivot and shift? And that's so, so fascinating that they really do… like that's the profile that you see.

00:11:08 Libby: Definitely. And the language profile of a PDAer is absolutely fascinating. You know, I could go on all day about it. I won't. I won't, but it is absolutely fascinating because they are usually really, really interested in language. They like the way the words sound. They might use language as a stim. You know, I've got a boy who likes the word hyperbole. And so when he starts to say that, I know he's actually self-regulating. And I don't even think he knows what the word hyperbole means, but he said, I like the way that it sounds in my mouth. I just like the way it comes across. 

00:11:43 Libby: And the other thing is they may use animal noises. They may just growl to begin with or hiss and spit like a cat to begin with. They may use baby voice. And yet the other hand, they're talking in long fluent sentences. But there's another thing that's. quite fascinating. And that's the way that they… so they can be Gestalt processors. Usually they're going through that phase quite quickly. So people haven't really noticed it's only when you retrospectively ask about it. But one of the things that I'm exploring at the moment is how they mitigate Gestalt later. 

00:12:29 Libby: So for instance, there's a girl the other day and she was using it as her own language, but I knew she was a really big fan of Jane Austen. And the thing she was saying… I was recording the session, so it was easy just to write it down. So then after the session, I put it into ChatGPT and I said, the 14 year old, really interested in Jane Austen. This is what she said. Where does it come from? And ChatGPT said, oh, that bit is from Persuasion and that bit is from Mansfield Park. And, you know, it's just fascinating. 

00:13:06 Libby: But the problem is people then expect more of them because they think they're much more linguistically able than they are. And then that drives up the listener's demand. And then of course the person can't cope with that. So they'll either withdraw from the conversation by either shutting down or walking away, or they might then feel the need to do some equalizing behavior. So, you know, it doesn't go well. The other person expects too much. 

00:13:34 Hallie: So interesting. So then what would be some supports that SLPs can suggest to the IEP teams and schools to help these students succeed in the school setting? 

00:13:46 Libby: It's… with that particular aspect, it's knowing that it happens and just accepting it and going with it but knowing that there might be some language challenges, particularly due to the dynamic nature of autism. So just because you can speak beautifully in one situation doesn't mean you can in another situation or just because you can understand well in one, you can't always do that because it's the dynamic. It depends how they're feeling in that time, how well regulated, etcetera. So the more you can understand what's happening with the PDA, the more you can support by what you do because it's getting the environment right. That's the biggest thing we can do. 

00:14:27 Libby: And we have to be careful because we may have decided through language assessment that actually we do need to simplify sentences for them to be able to fully understand. But we can't do that in the same way we might with other children because if they feel we're patronizing them, they'll just reject us. So it's a really difficult balance, but respecting them, being their equal, while being confident in yourself as a professional. And that sounds a bit like an oxymoron, doesn't it? You'd be their equal, but… be confident. But they need you to be confident, to feel safer with you. But getting the environment right, building the relationships, they're the best tips that I can give anybody when you're supporting a person with PDA. 

00:15:16 Hallie: Love that. What are some sample goals you utilize with this population? 

00:15:21 Libby: Well, it's usually for the professionals. So we have something called an educational healthcare plan. So in there, we would actually put what we need from the person rather than the child or the young person. So we would have to be able to access the curriculum in line with their ability or something like that. And then we would list all the strategies that somebody has to do to make them feel included and what training would be needed for that person to be in position to be able to do that. So the onus is away from the child or the young person and much more on the team around the child about what they need to do. 

00:16:02 Libby: And you know, things like projects on pause folder. That's been a lifesaver for me. So, you know, maybe I've prepared some things for the session and I've said, Oh, shall we do this today? And they go, no. Stick it up here, whatever. And so, but it doesn't matter because I just say, Oh, I'll stick it in the projects on pause folder. And then sometimes the curiosity gets the better of them and they then say, what was that thing you did? And I say, oh, it's just in the projects and pause folder. And I find them going in the folder and looking to see what it is. 

00:16:38 Libby: And then they might say, well, I'll give it a go because there's been no pressure to do that. And you know what it's like. When you've heard something, you might even have laminated it. But it doesn't matter because they know it's in there, you know it's in there and you know you will use it at some point. But there's no demand to use it. So they need choices. And that's a really individual thing. That sounds simple, doesn't it? Well, do you want to do X or do you want to do Y? That might not work because for some children they need, and young people, they need the choice to do it or not. 

00:17:14 Libby: And then others have said to me that it's like a big pizza. So if you're only cutting the pizza into two, that's still huge slices of pizza, so give me four or six choices and then I can cope. So it's always important to really find out what that particular individual likes. And it might be just two choices, it's easier if it is just two choices, but you have to really find out and work out what makes them tick. So the better the assessment, the more information about the young person, the easier it is to train the team to make the environment right.

00:17:53 Libby: And we have an excellent academic here called Luke Beardon, and he says, autism plus environment equals outcome. And so it is all about the environment and making it conducive for the young person. And that is really the same with the selective mutism. So that's another parallel. Get the environment right, make them feel safe, make them feel included, take away the overwhelm and you probably don't even need to work on the actual speech production.

00:18:24 Hallie: I love that. I love that it’s really just making a safe space. And when you said in the beginning, you love being that detective and getting down and trying to figure out what works. And a lot of SLPs are very type A and just want like, give me the roadmap. Give me the goal. Give me the therapy activity and tell me that it's going to work. And we have to be okay with just following that child's lead and just making them feel safe and smoothly. 

00:18:52 Libby: And I think more and more people will come to realize that is actually the only way forwards. 

00:18:59 Hallie: So we have to be okay with a therapy plan not going as planned. And we had to be okay with just winging it sometimes and just being there for that child and not always following the goal. 

00:19:10 Libby: Yes, exactly. Because, especially with the ones with PDA, if they think you have an agenda, then they're not going to stick to it anyway. Whereas if you know that your goal is to build a rapport with the child and then just see what happens, a lot happens in that session. 

00:19:28 Hallie: You did mention that it's not an official diagnostic term yet, but who is the one to make that determination that this is a profile of the student? 

00:19:40 Libby: It needs to be a multidisciplinary team. So here in the UK, we have nice guidelines and it tells you that, you know, it has to be a multidisciplinary team. It has to be behavior that's observed in different situations. And so the gold standard here would be a team of clinical psychologist, speech and language therapist, and maybe a pediatrician. And the team decides that. And I was lucky to be part of a working party to look at the difference between autism with extreme demand avoidance and PDA. And that was really interesting. We've actually written those up and they're on the PDA society website, the guidance for diagnostic clinicians. 

00:20:24 Libby: Unfortunately, not every team has read that yet. So sometimes you still see them say autism with a PDA/extreme demand avoidance profile. And we're getting there, but it's slow. But it does need to be a multidisciplinary team because there's lots of other reasons for demand avoidance. So a lot of my children who I work with who have adverse early childhood experiences will have demand avoidance. Any form of trauma can lead to a demand avoidance profile too. So it does need a team who can really look at the difference between the trauma profile and an autistic with a demand avoidance profile. It's about to really work out what they need. 

00:21:11 Libby: Because if you get it wrong, it can do damage. So if you give… a typically autistic child who's demand avoidant for logical reasons, if you give them the PDA strategies, the freedom, the flexibility, let's have choice, you decide what you want to do, let's add a little bit of excitement, we won't bother with rewards and things because we know we don't like those. That child, you know, that will be just so awful for that child who needs routine, consistency, you know, blow their mind. If you give a PDAer typical autism strategies, they can't cope with that either. So both sets when dealt with in the wrong way, will elevate their demand avoidance and not make it better. 

00:21:52 Hallie: So fascinating. Where can everyone learn more about you and everything you have to offer? 

00:21:58 Libby: Well, we do do a podcast, Let's Talk Small Talk, and we have a Facebook page where we tend to… that's the center of our sort of social media content really. And that's on Facebook and it's Small Talk Speech and Language Therapy. We do have a website as well, which is smalltalk-ltd.co.uk. 

00:22:18 Hallie: And we'll have links to all that in the show notes. Thank you so, so much, Libby. I always end my episodes with a joke and I had this one prepared even before you mentioned the hyperbole thing. So… that might give away the answer, but why did the student bring a ladder to speech?

00:22:34 Libby: I don't know. Why did the student bring a ladder to speech? 

00:22:37 Hallie: They wanted to work on their high frequency words. 

00:22:41 Libby: Oh, well done.

00:22:42 Hallie: I had that one prepared before even managing the hyperbole thing and I was like, oh, that kind of worked out perfectly. So thank you so, so much, Libby. Everyone go check out her website, go check out her podcast. And until next week, everyone stay out of trouble.

00:23:00 Hallie: Thanks so much for tuning in to another episode of SLP Coffee Talk. It means the world to me that you're tuning in each and every week and getting the jolt of inspiration you need. You can find all of the links and information mentioned in this episode at my website, speechtimefun.com. Don't forget to follow the show so you don't miss any future episodes. And while you're there, it would mean the world to me if you would take a few seconds and leave me an honest review. See you next week with another episode full of fun and inspiration from one SLP to another. Have fun guys!

00:23:42 Hallie: Hey there SLP, I have a quick question for you. What if you could have just one book on your shelf that actually gets the challenges of working with middle school and high school students? Well, it's here. Well, actually the pre-order is here, but hey, I'm so excited to let you know that my brand new book, The Secondary SLP Guide is available for pre-order. And when you pre-order, you get an exclusive bonus that you won't want to miss. 

00:24:13 Hallie: It is packed with real talk strategies, quick tips and inspiration that you can use with your middle school and high school students or all year long. This is the perfect book for a book club, a grad student group, or just flipping through when you're stuck and in a IEP writing spiral. So head to speechtimefun.com/preorder or head to my Instagram and send me a DM with the word pre-order and I will send you the link so you can pre-order now and I cannot wait for you to get your hands on this book in November but the sooner you grab it the better the bonus.

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