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For the Episode 16 Transcript, Click "Read More" below
00:12 Tiffany Hogan: Welcome to See Hear Speak Podcast Episode 16. In this Episode I talk with Karla McGregor and Shaun Ziegenfusz (ziginfuze) about their advocacy around Developmental Language Disorder including work on the RADLD campaign and DLDandme. We also talk about their research with a focus on functional and educational outcomes.
This conversation is 1 in a 5 part series on Developmental Language Disorder (known as DLD) released this week in honor of DLD Awareness Day, which this year is on Friday Oct 18th.
Thank you for listening! And don’t forget to check out www.seehearspeakpodcast.com to sign up for email alerts for new episodes and content, read a transcript of this podcast, access articles and resources that we discussed, and find more information about our guests. Also don’t forget to subscribe to this podcast and leave a positive rating in apple podcast or wherever you are listening.
01:25 Tiffany Hogan: Well, welcome Karla and Shaun to the See Hear Speak podcast. I will start by having you introduce yourselves.
01:33 Karla McGregor: My name's Karla McGregor. I am a senior scientist and director at the Center for Childhood Deafness Language and Learning at Boys Town National Research Hospital in Omaha, Nebraska, which is in the US. I do research on development of language disorders, and I do a bit of advocacy work on DLD awareness as well.
02:00 Shaun Ziegenfusz: So my name is Shaun Ziegunfusz. I'm a speech pathologist and researcher in Australia. My background is very much in clinical work with younger kids with developmental language disorder. Currently I'm undertaking my PhD at Griffith University, looking at the educational needs of school age students with DLD. And of course, I'm very lucky to be involved in RADLD in raising awareness of development language disorder.
02:28 Tiffany: Fantastic, and thank you Shawn. You said it was 8:00 AM there, and for Karla it's 5:15 pm.
2:32 Karla: Yeah!
Tiffany: And it's 6:15 pm here, so we're pulling it all together.
02:39 Tiffany: And it's Monday here, but it's Tuesday, there for Shaun. So we have a really worldwide event happening right here! That's right. So mentioned your advocacy Shaun, both of you mentioned advocacy for DLD. So Shaun, what led you to advocate for DLD?
02:58 Shaun: I guess I've worked clinically for nearly 10 years in the space and really was constantly surprised at how little people knew about the condition. There were so many heartbreaking conversations with families every week, where they were trying to explain to grandparents, aunts, uncles that these kids weren't silly or playing up. They legitimately had something difficult that was really hard for them to understand. So for me, from very much a personal level, I wanted to really help the families of the young people that I work with.
03:39 Tiffany: And Karla what's led you to advocate for DLD?
03:43 Karla: Really two things, I think. So one was that... So I've been in the business of conducting research on children with DLD for a very long time now, more than 20 years. I always have found that very difficult to find the children and young adults who might participate in my research. That was always really hard for me to reconcile in relations to the fact that it's a very prevalent condition.
04:12 Karla: So I thought if it's so prevalent, if it's about 7% of the population, but I can't seem to find any of these people, then it must be that I'm extremely bad at my job, or that a lot of these children are going undetected. You know, their problems are going undetected. And that really worried me. And then what kind of sealed the deal for me is a paper that I read by Dorothy Bishop. It was published in 2010, and it was called, "Which neuro-developmental disorders get researched and why?"
4:48 Karla: I think that was the title. And that was a very impactful paper for me because what I realized is that's it not only that the problems are being under-identified and therefore treated clinically. But, there also is a relative lack of research on the problem of DLD relative to, again, how prevalent and impactful it is. So there's certainly a lot of research, there's some really great research. We've made lots of progress over the years. But if you look at other difficulties, like ADHD and autism, that are not as prevalent, there's a lot more research going on on those populations than on DLD. And I really, I came to realize that this is a very broad problem. They aren't getting served clinically to their rate that they should be and we're not paying enough research attention to them, and I really do think that the one problem feeds the other problem in a rather downward spiraling kind of way. So that's what really lit a fire under me that made me want to do some advocacy and awareness work.
6:05 Tiffany: I feel I can really relate to all those reasons and as myself doing advocacy, one of the things that has struck me is just the difference between advocacy for dyslexia versus DLD. I studied the intersect of those two. I almost would feel just so nervous when I had to tell a family that their child had language disorder versus dyslexia. With dyslexia, I could say, "Okay, your child has dyslexia," and they would say, "Oh okay, I've heard of that," and I could give them several books to read. There were a lot of feel-good stories. I've sent them to the international Dyslexia Association website, there was a Family Support Group. Everything was out there. And then the next child I would see, I'd have to say “You have developmental language disorder. They’re (dyslexia and DLD) not the same, they could occur about 50% of the time. They can happen individually or alone.” And when I would tell that family, I just sense this deep shame that was associated with it because it was foreign and confusing. There wasn't really any information out there.
7:03 Tiffany: And we were just talking on a call, Karla. I used to use those parent articles, there was one written by Mabel. You said you wrote one yourself. And I would take this old binder and I would take it out of a three-ring binder, copy it out for the parent, and hand it to them. And they would just leave kind of bewildered, thinking like, "Okay, you gave us this handout, it looks legit, but there's really nowhere on the web, and there's not a legitimacy there." There was no support group, and that was really heart-breaking. So I think the advocacy that we're doing could have such a good impact, and I'm excited about it. Of course, we have DLD awareness day coming up October 18. There have been two big groups, and I think I'd like to tell the listeners about them and the first being RADLD. And Shaun, I thought you could explain a bit about RADLD. And then also, Karla, if you could talk a little bit about DLD and me, and where that fits within the context of RADLD, and how these efforts are being coordinated to bring awareness to DLD October 18th. I know I just put a lot out there! I’ll have you start, Shaun. Tell us about RADLD, what it is, and how you got involved. And then what's going on with RADLD for DLD Awareness Day.
8:15 Shaun: Yeah, look. I think the... Shout out initially to the founders of RADLD, or RALLY, as it was at the time. I mean, standing on the shoulders of giants in everything we do every day is pretty phenomenal. There was this group of specialists and researchers who really saw that there was a problem, as you said, with advocacy in this space. So they launched this YouTube channel to great success. I think that it was the right time to be releasing video content. People were really hungry for sharing things on social media. The YouTube videos, for those of you who haven't seen them, are really of a high standard. They’re very much steeped in evidence-based practice rather than in commentary or opinion. So they really resonated with a lot of people everywhere.
9:15 Shaun: Of course, we had the catalyzed consortium formed through the stewardship of a number, if not I think all, of the founders of the RADLD group. What that really led to was getting some consistent terminology for those of us out there who were using all of these 40, 50, 60, 70, 80 different terms all around the world. So this sort of led to the first DLD Awareness Day in 2017. What the founders said was, that they’d really felt like they'd set out to achieve what they wanted to achieve. They approached the lovely Stephen Parsons in the UK at NAPLIC and said, "Look, would NAPLIC play be interested in taking over this group in some way, shape, or form?" And I still remember the call because, for those of you who know Stephen, Stephen is an Aussie living in the UK. So Stephen rang and said, "What do you think? What do you recommend we should do? Is it too late?" I think it was about August of 2018. "Do you think it's too late to do something for DLD Awareness Day this year?" And I said, "Oh, look. We've got to do something."
10:28 Shaun: Very quickly, we had out the wonderful Karla and Lisa Archibald came on board, as well as my colleague, Natalie Turner, who's a marketing consultant. We all rallied together and pulled off this awareness day, the ABCs of DLD, together quite quickly. We launched our website for the first time, and started to expand more in our social media platforms. So we'd always had Twitter, Facebook was relatively new. We’ve now got a massive following on both social media platforms. But the website really has provided a solid base for people to come to and potentially find some solace, or information, or the help that hopefully they're looking for. So really excited that this is our third DLD Awareness Day on October 18th. This year's theme is very much about people who have DLD. So it's DLD: You & Me. So we've got lots and lots happening, which I'm sure I can talk about in the sec as well.
11:35 Tiffany: Sounds great. Karla, how did...
11:37 Karla: So I need to follow up on that, though. I need to follow up on what Shaun said because he's being extra modest. All the things he said, they're true. But I think of myself as a very can do person, but when we decided in August to have a DLD Awareness Day in October, I was kind of doubtful. And it's really Shaun who took this on in a major way. He's a superhero, superhero.
12:06 Tiffany: Absolutely.
12:06 Karla: I'd like to say that we've distributed the work a little bit more broadly this year, but still, he is a superhero. So, I'm just very thrilled to be part of the RADLD group and really excited about what we accomplished last year and what we're gonna accomplish this year. Do you have numbers Shaun on how many followers we have?
12:32 Shaun: Yeah, so we've just hit 4000 followers on Facebook! We look like we're about to out outstrip Twitter, which is pretty amazing given the difference in startup times on both platforms. So, we're about four and a bit thousand on Twitter and we've just, as of yesterday, hit 4000 followers on Facebook.
12:52 Tiffany: Wow.
12:52 Shaun: So I mean, that's huge. I'd love to... We've just gotten access to some more information on YouTube. So that'll be one thing I will be looking at this week, how many views we've had on some of those videos as well. Because they're proving to be extremely popular, still to this day.
13:09 Tiffany: Wow, that's great. I know I'm gonna show them on talk on Monday, next Monday a week from now. I show them every time. So, I can't believe it's only been a year because, Karla, I've been so honored to be a part of a team working on the website and distribution of information in North America, dldandme.org. I remember last year about this time, really trying to launch the website and get it going. So, can you tell us about dldandme.org. What drove you to start that website, and how is it different but yet similar to RADLD?
13:47 Karla: Sure. So I think it was 2017, I did an ASHA presentation. So if you have listeners who don't know ASHA, that's American Speech Language Hearing Association. We have a national meeting every November. And so in 2017, I was at that meeting and I had the good fortune to give a presentation with Sean Redmond from the University of Utah, and a wonderful parent, her name is Jodi Oliver, and she's a speech language pathologist, but also a parent of a child who has developmental language disorder. And so the three of us joined together to give a talk. And I already mentioned the paper by Dorothy that kind of motivated me to start thinking really carefully about why these children are getting missed and what we can do about it. And so, that was really the impetus for the presentation. The presentation was really well received. I think the time was right for people to hear that message. It really made a huge difference to have Jodi Oliver as part of that presentation, because it's so powerful to hear from families of children who had DLD to share their experiences of what it's really like.
15:07 Karla: In fact, this mother is also the mother of a child who has autism, and she was able to talk about her experiences raising both of these children. And of course, there were challenges in raising both of them but that was kind of the point. Is it's even more powerful because people know that there can be challenges around caring for a child with autism, but not as much awareness about what challenges are involved in caring for a child with DLD. I think that was a really powerful moment for the audience. It certainly was a powerful moment for me. And so, after the presentation, we began talking about what could be a fruitful next step. In fact, you were one of the first people we talked to, Tiffany. So we decided to launch a website, and it’s called DLDandMe.org. Our overall purpose is to gather and post evidence-based accessible information for parents.
16:08 Karla: Now, of course, we're really happy for anyone to visit the site but we're really hoping to write in a way that addresses parents' concerns and that's accessible to them. We really try to think carefully about what topics would be a concern to families. We're hopefully addressing an important need. That's what we're up to. It has a bit of an, I'd say, North American flavor because some of our posts concern how you would go about making sure your child's rights are respected in the US context of public schools, for example. We felt that was really needed. It's not a message that we’ve taken internationally, but that's where we are with it.
16:56 Karla: I'd like to say that we are at this point small but mighty, so we have I think 19 or 20 posts with more coming out every month. We have three videos from wonderful people talking about their experiences, people who have DLD. We have somewhere between 1500 and 2000 followers on Twitter. We just started our Facebook and Instagram like last week, so I think we have three followers. So stay with us on that.
0:16:08 Tiffany: I'll link it in the podcast notes!
17:30 Karla: But that's what we're up to. And you asked how it interfaces, if it does at all with RADLD. I've drawn some contrasts. I suppose, it's more geared towards content for parents, especially in North America. It doesn't have that same international focus and flavor as RADLD. I really hope that they both work together. I see RADLD as an umbrella for worldwide awareness and advocacy and information sharing. Perhaps there'll be many more country-specific resources to develop alongside, or under that umbrella in the future.
18:17 Tiffany: It seems like this advocacy also, Karla, did it coincide with your move from Iowa to Boys Town? So you had some funding associated with Boys Town that you chose to use for this advocacy work?
18:29 Karla: Yeah, I really can't thank enough the people who are contributing to the website. Our content generators, I write some content, Tiffany Hogan writes content, Sean Redman, Jake Mickelson, who's a geneticist at the University of Iowa, Lisa Archibald, Toronto, and Amanda Van Horne at Delaware, all volunteers who are writing content. We're also, I'm happy to announce, going to implement a guest host of the month. And I'm not going to give away the surprise because you have to wait and see! But we have our two first guest posts of the month lined up, so there'll be others generating content. And then behind the scenes, Boys Town National Research Hospital has been so generous. They are the ones that are really funding what it takes to design a website, and keep it up-to-date and accessible. So lots of thanks going out to them.
0:19:30 Tiffany: And I just have to give you a shout out too, Karla because you're such a generous leader. Incorporating all of us into this amazing effort that you could've done by yourself, but doing it as a team has been such a gift for everyone involved. I remember going to that presentation, I was sitting in the audience and I was thinking as I was listening. I had just been given, and so excited to start, a new NIH grant studying children DLD from kindergarten to second grade. What was weighing heavily on my mind was making sure that I could find these kids. And as a doctoral student, I worked with Hugh Catts on the Iowa study where we looked at... It was an epidemiologic study looking at the prevalence of language disorders and you mentioned the prevalence being about 7-9% but I remember what struck me the most as a student.
20:20 Tiffany: It was one of those little facts you read and it just stuck in your mind. Like you mentioned with Dorothy's paper. It's like it just won't get out of your mind, and I remember reading that only about 30% of children identified in kindergarten by the Iowa study. So in that study you test all children. Almost all the children you can get in kindergarten in the state of Iowa, you just test them. And then there was data to see, okay, well they look like they have language impairment on a test, but then were they getting services? Only 30% were getting services.
20:53 Tiffany: Then on that study, I was fortunate enough to be on the arm of that study where we followed them longitudinally. So we tested in kindergarten, second grade, fourth grade, again in eighth grade, 10th grade and 12th grade. We just consistently found that the children who showed this language disorder in kindergarten, even if they weren't identified, they started to show some real struggles academically later on. It was so unfortunate that they didn't have those services early, and that weighed on my mind for that grant. So when I heard you all speaking and thinking about this advocacy work, I actually had lunch with Sean after that talk and said, "I wanna be involved in that. That sounds great, I'd love to." And he said, "Oh yeah, I'll talk to Karla." It kinda came together so organically, and I'm just so glad that I happened to be in that talk and work together. Again, it just really strikes me that's only really been a year and a half or so since that time. It's really moved forward. It's amazing what's happening across the world, and what's planned for October 18th. Shaun, what are some of those happenings around the world for DLD Awareness Day?
21:57 Shaun: Well, for 2019, we prioritized four key areas that we wanted to really hone in on. The first was establishing a RADLD Ambassador Program. We get people all the time saying that they wanna be involved, how can they help, what can they do? So we thought well look, let's provide an opportunity for people to get involved. I still remember somebody here in Australia saying to me, "I really want something that will get me out of my office, something that will connect me and unite me and make me feel like I'm part of a team or something bigger than myself." I still remember we floated the RADLD Ambassador idea. I think Karla, and Lisa, and Stephen, and Anita Wong at the University of Hong Kong, we all looked at each other and thought, "Oh, if we could get 50, we'd be really, really pleased." And I think as of this morning, we're very close to achieving 500 Ambassadors all around the world.
23:03 Tiffany: Wow!
23:03 Shaun: It's been an amazing response. So thank you to everybody who's gotten involved. We've got professionals, and parents of children with DLD, and people with DLD themselves that have all signed up. We send information out by a newsletter as well as having an online Facebook group for the ambassadors to connect. It's been phenomenally successful and I really feel like it's gonna lead to a huge impact, the DLD Awareness Day this year, so that's been amazing.
0:23:36 Tiffany: I got kinda teary just hearing you say that Shaun. I knew there were several, but I didn't know there was that many.
23:43 Shaun: Yes.
23:43 Tiffany: Congratulations. That's awesome.
23:44 Karla: That is really exciting. I didn't know you have gotten that high either. That's really...
23:47 Shaun: Yeah. I think last time I got excited at 400, and then all of a sudden, it's just kind of whooshed away in the lead up to DLD Awareness Day.
23:56 Tiffany: Wow!
23:56 Shaun: It's been hard to... It's a bit of a moving beast. The two and three ideas that are going together for DLD Awareness Day, we really want people get involved, are the concept of tell us your story. We really want to put a face on DLD this Awareness Day. So we've given people two options really to get involved, one of which is tell their story through a written submission. So we've got all of these amazing stories that we'll be really releasing in the lead up to DLD Awareness Day, that people have so graciously given and shared with us to be able to put on our website and share on social media. But perhaps writing isn't everybody's forte, so we've also given the option of being that they are able to do a video submission, and we've just started up a special playlist on the RADLD YouTube channel so people can actually share their own videos and we'll be able to share those across our social media channel, really to show this is me, this is who we are and this is how DLD impacts our lives.
25:31 Shaun: Sometimes that's a big impact and sometimes that's hard and sometimes it's great. And we've got some amazing, amazing, amazing stories coming through. I'm really looking forward to being able to share those over the coming couple of weeks in the lead up to DLD Awareness Day. And then the last... The four-prong attack to DLD Awareness Day has probably, Karla, would you say it was a biting off a little bit more than we could chew, was the translated project?
25:37 Karla: I think that's our MO. I think that's just how we do it.
25:41 Shaun: It's going to... We go... Go hard or go home.
25:45 Shaun: So we kind of, in the wash up from 2018, we really looked at our analysis on social media. You get lovely reports around who's engaged with your campaign and two things were: One, that it was still very much perceived to be a UK-based campaign. Obviously, the founders were UK based, so it was perceived as a bit of a UK-based campaign. But 99% of people who'd engaged in the RADLD Awareness Day... The DLD Awareness Day last year, were English-speaking only. That was kind of a big aha moment where so much of what we do presumes that English is the main modality that people are communicating in. But we are really out there saying that we're the international DLD Awareness Day, so why don't we look at releasing some translated materials. Through the amazing support of the lovely Anita Wong, who came on board as another international committee member in, I think the end of 2018, beginning of 2019, I think, is that right Karla?
26:51 Karla: Yeah. That sounds right.
26:53 Shaun: Anita was able to help step us through a translation process for the very famous RADLD DLD Fact Sheet. We had more than 50 volunteer translators working in teams all around the world. And just yesterday, or what would be I think today still for you Tiffany and Karla, was International Translation Day, and we released 20 translated fact sheets on radld.org. So we've got everything from Albanian to Welsh and everything in between, and it really feels like a culmination of such a big project and ambitious project. I think it will really help people all around the world really connect and share this information in a genuine way, rather than just in English, or just presume confidence in English.
27:46 Shaun: I think it's gonna be massive moving forward. And I'm currently finalizing our posters, so the RADLD posters will also be released in all 20 languages, hopefully in the next day or so. So we've got lots of materials now, hopefully that will help raise awareness. Not just in English, but in many other languages. That's been a huge and hopefully, wonderful opportunity.
28:09 Tiffany: Wow, that's amazing, Shaun. I'm so glad. Good on you for moving that forward. I was presenting in May, in China, and was asked often about, "Well, do we have DLD here at all? Is it just an English phenomenon?" It's not, it's a brain difference, and it's seen across all languages. And so it's gonna be amazing to have those fact sheets in different languages and to be able to spread that awareness. And you know, I have to say, listening to both of you, it seems like this is all you do, is like DLD awareness. But actually, [chuckle] our listeners might be surprised, that this is actually just a tiny, tiny bit of what you do, because you each study DLD. Shaun, you mentioned you're getting your PhD. Karla, you've been studying DLD for some time. And I wanted us to talk a little bit about what you're studying in terms of DLD. What are some of your findings? How is it informs your clinical practice and advocacy? That's really the lion's share of what you spend your time on.
29:12 Shaun: I'll let Karla go first, because I really feel like when Stephen said that Karla was joining the committee, and I'd spent years reading Karla's research, I was so tickled to be actually working with somebody who's has such illustrious career in researching DLD. So Karla, take it away!
29:31 Tiffany: And I agree, Karla. I'm gonna say, standing on the shoulders of giants, Karla was one of my early mentors through ASHA! I'm also just really honored to be a part of your team, Karla. So tell us, take it away.
29:45 Karla: Well, my goodness. Okay, stopping my blushing right here. No one can see me, it's a podcast...
29:51 Karla: Okay, so you gave us a heads-up on this question in advance, so I thought about this a little bit. So Tiffany said, "I might ask you how did your findings inform clinical practice?" And I thought, "Oh, heavens. I just hope they do." But I can think of two ways that I hope my work might have influenced clinical practice. That’s in helping people to understand that DLD is not just about grammar, and not just about little kids.
30:28 Karla: So when I first began my work, I did studies on morpho-syntax in preschoolers. There was a lot of work on morpho-syntaxic difficulties in preschoolers who had DLD at that time. And indeed, it is a rather robust marker of the problem. So it wasn't that that was ill-fated work, I think it was very important work. But I think what we didn't pay a lot of attention to at that time, were other manifestations of the problem, and the extent of which it manifests at older ages. It perhaps, manifests differently at older ages.
31:12 Karla: And so, a lot of my work has concerned how well people with DLD learn new words, remember those words, use those words. So it’s not really questions about grammar. The way I've started to think about it is that, I think early on, yes, the population level grammar tends to be the bigger problem than learning words. But grammar itself is also more of a closed problem space. So a typical kid going to school has pretty much mastered grammar, but they have many, many, many thousand words left to learn. So I think this same sort of developmental parallel we see in people with DLD, the grammatical problems are quite significant early on. Eventually, they pretty much get it, but they still have many, many, many, many thousands of words to learn. That's a life-long problem space. So I do think there's a place for the importance of word learning and its impact on people with DLD in our research labs and in our clinics. So that's, hopefully, one contribution.
32:19 Karla: And then some of my research, certainly not all of it, but some of my more recent research has been on young adults, in fact college students, who have DLD. To see that, not only are they older, but they're so successful in managing their problem, that they've made it into university, right? So these are probably the milder cases. But yet, these students still face some struggles with academic learning that at least in part, are associated with their DLD. So yeah. I guess, I hope that people read my work and think it's not only about grammar, it's not only about little kids.
33:00 Tiffany: Awesome. Shaun, what about you?
33:07 Karla: Tell us about your dissertation research, Shaun.
33:09 Tiffany: I know. I wanna hear all about it.
33:10 Karla: I haven't had this conversation with you! I wanna hear what it's about.
33:13 Shaun: Well, I think I should start by saying that in terms of my area of work, I've actually spent the last 10 years working primarily in a school, specifically for children with DLD. So I still remember arriving at this place and thinking, "My goodness, I've got to work with teachers and I really don't know anything about working with teachers." So I actually was a little bit crazy as a SLP and decided to go out and get an education degree because I really wanted to understand how the education system worked. I still remember that my first assignment was a comparative analysis of terminology between speech pathology and education titled, "What the F is Pedagogical Practice"
34:00 Shaun: Because I really didn't understand what this pedagogy word meant. So it's really led me into focusing a lot of my attention, not just on the education because we know that children with DLD actually do struggle with school. I think that that's well known now, but what do they actually need to succeed? So a lot of my work at the moment, in my PhD, is actually what are the educational needs of school aged students with DLD. I'm going quite broad, I'm asking everyone, including the young people themselves, well what do you actually need to succeed at school? Because at the moment if you read the literature, it's relatively depressing. Nobody is coming out and saying this is what kids are doing well at school when they have DLD, or looking at how do you actually feel about school?
35:01 Shaun: So there's a lot around the actual educational process that we need to look at, but what I'm really excited about is not just asking the speechies, but also asking the teachers, the families, the young people themselves. Really digging deep. So I'm particularly interested in that educational journey. So I'll be focusing on that for the next little bit. But lots of things take my fancy when it comes to research in DLD. So you never know!
35:34 Tiffany: There's a lot to cover still. And I know, Karla, you've even done some work, starting some work on outcomes as well. Functional outcomes, correct?
0:34:20 Karla: I'm really interested in functional outcomes right now. And I love, Shaun, that you're saying that part of your research is focusing on understanding what are some of the strengths?
0:34:29 Tiffany: Yes.
0:35:42 Karla: Right? I think both of those are real areas of potential in our research field that we need better functional outcome measures and we also need more complete profiles. We, rightly so I guess, focused on the weakness because we wanna understand the problem. At the same time, I do think it's healthy to focus on the strengths as well, and to understand ways in which these children and young adults are resilient.
36:26 Tiffany: You've just said it, Karla. I've been so interested in the psychological models of risk and resilience. The work in dyslexia is way ahead in that way. It’s thinking about protective factors, and how does that heterogeneity of DLD play out? They talk about playing out in dyslexia, but I think we can learn a lot from that literature. It sounds like both of you are moving in that way, which I think is so important. I wonder too, also about more qualitative work, it sounds like you're doing some of that Shaun. Those interviews, trying to think for themes, and really talking to those who are working with children with DLD.
37:43 Shaun: Yeah, absolutely.
37:08 Karla: Oh I'm sorry.
37:08 Tiffany: Go ahead, Karla, tell me!
37:11 Karla: We're doing a bit of qualitative research on functional impact as well. We're interviewing parents of children, of first graders, who have DLD and children who don't of course. We’re getting at this question of how are these children perceived in their families? What strengths do the parents see in these children? Tt's a new type of research for me. I would never say that I'm an expert, I'm quite a novice, but I do have an expert leading on the team. I'm finding it really fascinating to hear these stories.
37:48 Tiffany: Absolutely. As we're getting towards the end of the podcast, not quite there, but I do wanna make sure we hit a couple of questions. I'm gonna ask three questions. The first one is for both of you. In general, what's one take home point you'd like clinicians to know based on your experiences, both research and clinical? I have a lot of clinician listeners here that are, I'm sure, thinking about the kids on their case loads and they maybe thinking, do they have DLD? We talked about the terminology. They're not always called DLD. At least in the US system, they're often called developmental delay early on. They can transition to being called speech and language impairment, just language disorder, specific learning disability, lots of different labels. So what is one take home point you can think, if you were talking to a clinician now, about DLD?
38:46 Karla: For me, especially in US schools, because we know that some of these children are still falling through the cracks, I think about how they qualify for services and educational supports in US public schools. By law, there's a big emphasis on educational impact in that qualification decision. So I would love for clinicians to keep in mind the great risk that DLD holds for reading disabilities, spelling problems, and math disabilities. I always go back and cite a paper by Yong and colleagues in ’02. Children with DLD are six times more likely than other kids to have a reading disability, six times more likely to have significant spelling problems, and four times of more likely to have a math disability. So if it's educational impact that gets these children qualified for services, it's just there in spades. I would love for clinicians to arm themselves with that information so they can fight the good fight.
39:57 Tiffany: Absolutely. Along that, on the same lines, Karla, I've been thinking a lot about screening and working with groups on screening for dyslexia. I really hope the next step is to screen for DLD early on in kindergarten, and to catch these kids. Like I mentioned in the Toland studies, 70% of those kids being missed. They wouldn't be missed if we had a screen or they'd be less likely to be missed if they were actually tested. So, yes, right on. I think that educational impact is critical. Shaun, what do you think?
40:30 Shaun: Karla took the words right out of my mouth regarding the impact on education, and for clinicians to think about that. I think I've got two... Can I have two points?
40:41 Tiffany: Yes. Absolutely!
40:42 Shaun: I think one is that I encourage clinicians not to be afraid of change. I think that we, as clinicians, have been crying out for consistent terminology for decades. It's so ironic that as a communication-based profession, that we've been so poor in communicating what these children actually have and have difficulties with. I'd encourage clinicians not to be afraid of the change, but also to not be afraid of using terminology. I think that one thing that we tend to be as a helper personality type profession, is that we're really nice. I don't think I've ever met a speech pathologist who wasn't lovely and kind and wanting the best for their clients. We tend to, at times, avoid labels.
41:35 Shaun: I think that, in fact, it's not actually about labeling for detrimental purposes, it's actually about labeling to help explain and help find places like RADLD and DLD and Me. If you don't use terminology, then you can't find the resources to help you. And there's some really active parent groups for DLD. But if you don't know you've got DLD, you're never gonna find them. Don't be afraid. Really familiarize yourself with those CATALISE papers, I still refer people back to them weekly. And these are speech pathologists working on the floor every day and they're still getting their head around this change of practice. And we're very fortunate here that Speak Pathology Australia, which is the national body here in Australia for speech pathologists, has embraced the term DLD. There's an amazing group of researchers and specialists who are really supporting that change in terms.
41:30 Shaun: The other thing that I probably really want clinicians to know was to also understand that the challenge with the term specific language impairment was there was nothing specific about it. And in fact, there's gonna be many areas that really are going to be impacted. My work has focused a lot on multi-disciplinary support of children with DLD. And why would you hire an occupational therapist for an organization that supports kids with DLD? Well, in fact, they have a high prevalence of having finding gross motor difficulties and sensory processing disorders. There's gonna be other aspects beyond language that are gonna be impacted for these young people.
43:11 Shaun: I think that because DLD falls very much to a speech pathology domain, in terms of diagnosis and treatment, I really would encourage speech pathologists who might be listening to consider the fact that just like a number of other conditions, such as Down syndrome or ASD, that you're probably gonna need to build a multi-disciplinary team. This of course, includes the family and the person with DLD themselves. Really consider that it's not just, for me, in my clinical experience, speech pathology is very rarely enough. But sometimes, that's what we're advocating for as a bare minimum.
43:49 Tiffany: Shaun, what's it like in an educational system in Australia, do you also have the same issue of not using the term DLD in the school system? What would a child with DLD likely be diagnosed with in the school system in Australia?
44:02 Shaun: We have a decentralized funding system. So each state, despite having a national curriculum, which is a fantastic achievement, to have consistent expectations, we have separate funding. I'm very fortunate in the state where I live, where children with DLD may get some funding. But it would be less than one percent of children in the school system getting funded under that category. I live an hour and a half away from the border of another state. And in that state, students with DLD don't receive any funding or support through the state education system.
44:38 Tiffany: Wow.
44:38 Shaun: In some states, it's two standard deviations below the mean. For some states, it's three standard deviations below the mean. Some states and territories would say that it doesn't exist, or they only fund up to eight years of age. It's incredibly variable. That's why I feel really passionate about my research, because I'd really love for the Australian context to say to decision makers and policy makers, "Hey, we've actually got a legitimate problem with 7% of kids coming through the education system. They either aren't being identified, aren't getting the support, and it's putting a huge strain on the economy and the education system."
45:24 Shaun: Teachers say to me all the time, "I've got this kid, and I don't know what to do," or "They seem a bit different. Do you think it might be that DLD thing you keep on rattling on about?" I'm hoping that by actually showing that there is an issue with our system, that potentially, we can actually do something about it. But as Karla knows, I'm the eternal optimist. So, fingers crossed.
45:47 Karla: I like that about you, though!
45:49 Tiffany: I do, too. We need that eternal optimism, it can feel pretty depressing at times in the trenches, so it's good to have that. I think maybe we've covered this but I'm not sure, I just wanna make sure. One question I always ask guests is what you're working on now. What you're most excited about. Do you think we've covered that in this discussion or do you have another project or study that you're most excited about that you're working on that we haven't talked about?
46:18 Karla: I feel like I've certainly said enough about my research, but I will say that I'm super excited about the Translational Research Program, that we're building a Boys Town National Research Hospital. We are adding lots of faculty, lots of clinical programs related to expanding research on developmental language disorder and other related neurodevelopmental disorders that affect language learning. I'm just super excited to be part of that growth and change. I hope it's gonna have an impact.
46:51 Tiffany: Oh, I bet it will. And I can't wait to see what you come up with. I'll be watching that, for sure.
46:58 Karla: Shaun, once you finish your doctoral work, we're gonna need a new scientist.
47:02 Tiffany: That's right.
47:05 Shaun: Sounds fab. Well, I need to finish it first. [laughter]
47:08 Karla: Well, I could have trouble convincing you to move from Sydney to Omaha, but not that there's anything wrong with Omaha, it's lovely.
0:47:17 Shaun: No, look. I was gonna say, "Wherever my girls are, I'll be fine."
47:22 Tiffany: That's right.
47:24 Shaun: Yeah, I think that I've covered a lot of what I am currently up to. I guess I will put in a little plug that my PhD, we're about to launch our social media channels. So across Facebook, Twitter, and Instagram, you'll be able to follow how we're going @DLDedresearch, so DLD education research. So really I'll be focusing in on that. I'm excited, I'm very close to finishing a systematic review looking at educational outcomes of students with DLD. So that's registered with Prospero, if anybody's interested in having a bit of a look. Might save them a bit of time, hopefully, because I think it's been a really interesting experience and I've found some really fascinating things. It's interesting you mentioned the Young paper, KARLA, because there's some very consistent things coming through in this systematic review. They will really support, I think, that there is some key areas that young people with DLD have difficulties with. But it also demonstrates there's a number of areas in educational research for students with DLD that aren't researched at all. In fact, that there's a big gap in our current educational knowledge about supporting and educating school-aged children with DLD. So watch this space and follow along because it'll be a bit of a journey. I'm hoping people will get involved and share because the more we know, the more we can bridge that research to practice gap.
48:56 Tiffany: Well, the listeners know that everything we talk about in terms of resources on the podcast is found on the podcast website, so everything that we've discussed, all these links, I'll put there and we can even add that Shaun as it's launched.
49:10 Shaun: Awesome.
49:11 Tiffany: We'll add to our resource, so people can come back to it. Now, this is one of my favorite parts of the podcast. Because I'm an avid reader, and study not only language but literacy, and I like to ask my guests what their favorite book from childhood is. Or now, I do open it up, so it doesn't have to be from childhood. Can you share with the listeners what's one of your favorite books?
49:35 Karla: I have an answer at the ready because I've thought about this before. A few years ago, a local library, they have a podcast and they asked this question. So I've had to put some thought into this. The book that came to mind then, and still I would say was my favorite as a child, was The Trumpet of the Swan by EB White. And I think EB White's probably more famous for Charlotte's Web, but I really like The Trumpet of The Swan. So when I was asked about this a few years ago, I was trying to remember what I liked so much about it. So I went back and I read it again, and you know what, it's kind of about augmentative systems. It’s kind of like a speech pathology thing.
50:20 Tiffany: Oh. Wow.
50:22 Karla: The swan can't make the honking noise that... He can't trumpet. He's a trumpeter swan, but he can't make that noise. So his father buys him a trumpet, aka an augmentative device. So I feel like maybe that was a little bit of the roots of me wanting to be a speech language pathologist.
50:46 Tiffany: And when did you read that book, how old do you think you were?
50:48 Karla: Oh, I don't know, when would someone... Maybe 10.
50:51 Tiffany: Oh, wow.
50:51 Karla: I guess. Yeah.
50:53 Tiffany: The seeds of SLP!
50:53 Karla: It's a great book. I highly recommend it.
50:55 Tiffany: Wow. The seeds of SLP were planted in you very early.
50:59 Karla: Yeah.
50:59 Tiffany: That's awesome.
51:01 Karla: Yeah.
51:02 Shaun: I was gonna say, EB White is popular in our house. My daughter has just dressed as Fern to go to her school book week parade, so there was the spider and all in the outfit as Fern in Charlotte's Web.
51:15 Karla: Great.
51:15 Tiffany: That's awesome.
51:19 Karla: Perfect. Perfect. EB White was amazing. I like everything he wrote.
51:22 Shaun: Yeah. Yeah, beautiful.
51:24 Tiffany: Oh, I cried so much though. Oh, that book.
51:28 Tiffany: Karla, but I wanna read it now. I've read Charlotte's Web, of course. It's a tearjerker, but fantastic. Shaun what's your favorite book?
51:38 Shaun: Oh, look, this is a really tough question. Probably the most challenging you've actually asked.
51:44 Shaun: Because there are many. For me, at the moment, I'm very much enjoying the fact that my daughter has just discovered Enid Blyton. It is lovely because being a big Enid Blyton fan as a child, she's just discovered them, and it's nice to watch her. But if I was absolutely honest, my favorite book as a child was BFG by Roald Dahl.
52:08 Tiffany: Oh yes.
52:09 Shaun: Yeah. To the point where my eldest daughter is named Sophie. And my nickname as a child was the BFG because 11 or 12 years of age I was over six foot. So...
52:19 Tiffany: Wow.
52:19 Shaun: I was a tall and gangly guy. But what I think I really loved about it, and when I reflect on it, is the word play in the literature is so beautiful. But there's also a lovely point, and I wish I had it in front of me, where Roald Dahl had had a family member who had had a stroke. It talked about the fact that the words don't come easily to me. It's still, as a speech pathologist, one of my absolute favorite quotes from a children's story because he talks about the fact that this language business isn't easy. It's not something that everybody can do, but it doesn't actually matter because we all get there eventually. So there's a lot of things about the BFG that definitely pull on the heart strings from a childhood memory, and something that I enjoy now.
53:10 Tiffany: Oh that's fantastic. Those childhood books really do affect us don't they? They live kind of deep inside of us.
53:16 Karla: Awesome.
53:17 Tiffany: We carry them throughout our day. So thank you for sharing your favorite book. And thank you both for spending time with me today. Early morning for you, Shaun. And evening for you, Karla.
53:27 Shaun: Alright, great.
53:28 Tiffany: To get the word out about DLD awareness. This will be released at DLD Awareness Week, so listeners will be hearing it during that week. We'll be sending them to those resources that we mentioned. So thank you so much!
53:41 Karla: That's perfect. It was such a pleasure, thank you.
53:46 Shaun: Yeah, thanks so much for inviting us. It was great!
53:51 Tiffany Hogan: Check out www.seehearspeakpodcast.com for helpful resources associated with this podcast including, for example, the podcast transcript, research articles, & speakers bios. You can also sign up for email alerts on the website or subscribe to the podcast on apple podcasts or any other listening platform, so you will be the first to hear about new episodes.
Thank you for listening and good luck to you, making the world a better place by helping one child at a time.