Dr. Umar Toseeb Hello, welcome to the Papers Podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Umar Toseeb, Professor of Psychology. My research focuses on special educational needs and mental health in childhood and adolescence. All listeners to this and indeed, any of ACAMH’s podcasts, are eligible for a free CPD certificate. Do please visit acamhlearn.org for details of this, together with information on how you can access hundreds of hours of free talks, lectures, interviews, all of which you can also get free CPD certificates for. The web address is acamhlearn.org. That’s a-c-a-m-h-l-e-a-r-n.org. If you’re a fan of our Papers Podcast series, please subscribe on your preferred streaming platform, let us know how we did, with a rating or review, and do share with your friends and colleagues. The focus of today’s podcast will be “Developmental Language Disorder,” in recognition of Developmental Language Disorder Awareness Day, which this year falls on Friday the 18th of October. I’ll be talking to Shaun Ziegenfusz, Lecturer at the School of Health Sciences, Griffith University, Australia. Shaun is a practising Speech and Language Therapist and Co-CEO and Co-Founder of the DLD Project, which we’ll speak about later. Shaun also organises the International Developmental Language Disorder Research Conference, which takes place online September of every year. Thank you so much for joining me. Shaun Ziegenfusz Thank you. Thanks so much for inviting me. Dr. Umar Toseeb Can you start by telling us a bit about your background, who you are, what you do and what got you interested in DLD? Shaun Ziegenfusz Yeah, absolutely. So, I initially got a science degree and was really interested in how the brain developed and that was, sort of, my first passion and love was neurology and genetics and why people develop or develop differently. And then, I went on and studied a speech pathology degree and I really got interested in, again, sort of, fusing that brain development neurology and thought at the time I was going to work primarily with adults. And the idea of working with children was a little bit terrifying, if I’m honest. But I ended up working with kids and I’ve worked with kids my entire career, basically, from, sort of, zero to 18. And I’m now sufficiently old enough to have clients who are adults who I work with, you know, because they just keep on getting a little bit older as I do, too. A few years ago, I decided that I’d been working in schools for quite some time, love working with school aged children, really passionate about education, so I thought why not go back and get an education degree? Because that’s what you do, apparently, and I’ve been very fortunate to fuse both my passion for speech pathology and education in my doctoral studies. So, I’ve actually just recently submitted my PhD on the “Educational Needs of School Aged Children with DLD,” thank you, and more excitingly, I’ve actually got my Examiner reports back this week. So, I’ve busily been tidying things up and sending those back. So, it’s a busy but exciting time for me, professionally and personally. Dr. Umar Toseeb Excellent. I hope the Examiner’s reports are not too harsh and difficult. Shaun Ziegenfusz No, they’re actually delightful, but I think it’s, kind of, all built on the back of just a real love for supporting young people and their families. I was so fortunate early in my career to find a school that was specific for children with developmental language disorder, or what we used to call specific language impairment or primary language disorder, or a myriad of other names, and worked there for a number of years, supporting young people and their families. And I’ve always just felt that, you know, DLD has been so severely under-looked in funding and in research and in clinical practice. I think there’s a little bit of Australian spirit in there, where it’s, you know, we fight for the underdog. I felt like DLD was a bit overlooked, and I’ve just met some of the most amazing people with developmental language disorder who just continue to encourage me and make me want to keep going. And I always acknowledge at this point, as a, sort of, a positionality statement, I don’t have DLD. I don’t have children with DLD, but I’m just really passionate about it and I just think that I’ve met some amazing people, and I continue to learn from them, as well as our clinical and, you know, research works. Dr. Umar Toseeb For people who are listening to this podcast to learn more about DLD, let’s just get into it. What is developmental language disorder, or DLD as we’re going to call it? Shaun Ziegenfusz Really simply, DLD is a lifelong neurodevelopmental condition that impacts a person’s ability to understand and use language and it’s – the cause for that is unknown. So, we’ve got language systems in the brain that we don’t fully understand. We know that there’s many, many, many genes that control the development of the brain. And in doing so, we have this amazing acquisition of oral language, which I still, as a father, have just been absolutely fascinated to watch, you know, typical language development up close and personal. You know, we’ve got, you know, 90 to – 90 something percent of children that will just acquire language as if by magic and then, all of a sudden, you’ve got kids, like those with developmental language disorder, where language just doesn’t come naturally. And it’s not to say that they can’t talk. Often that’s a misconception that people think, oh, well, DLD means they can’t talk. They can talk, but they can’t talk as well as we’d expect them to and it really impacts them day-to-day. So, the difficulties with language and the day-to-day impact is a really key part of the diagnostic process, and the third part is that it’s ongoing. Children with DLD become adults with DLD, but we know that their DLD will impact them at different ages and stages. So, the impact of DLD at five is very different to 15, which again, is very different to 25, and DLD will impact people differently, which we’ll talk a little bit about today. Dr. Umar Toseeb And what is the typical age of onset? When would you expect a child to say, well, this is DLD and not just language delay, for example? Shaun Ziegenfusz Oh, controversial term in the literature at the moment. I think that one thing we have to acknowledge is that language development, in the first few years of life, is very up and down. Some children will be plodding along okay and then, you know, the difficulties will become more apparent when they get to school, when they have to start using school language. Other children it will be more apparent when they’re younger, but we’re not really sure what to call it. It’s quite different. If we were to think about it from a screening perspective, compared to, say, the advent of – you know, neonatal hearing screening is such a phenomenal approach to investigation ‘cause we can find out from a very young age that a person has difficulties with hearing or not. But with speech and language, we actually really need to start utilising speech and language. It’s almost a bit of a waiting to see, and I know many people are starting to investigate, well, what are those early markers? And we’re starting to see some of those, you know, potential early markers, but it’s not always clear. I often will say to families that “It’s more common to diagnose DLD after school entry and particularly when we know language starts to stabilise at school entry.” In my clinical work, it’s actually not surprising for me to diagnose adolescents and in fact, most of my clinical work, in the last few years, has been diagnosing 12-18-year-olds with DLD and they’ve just missed the diagnostic boat entirely. But I’m hopeful with awareness raising and early identification, that we may pick up these young people earlier and give them some good supports and that hopefully, one day, we might even be able to pick this up a little bit earlier. Dr. Umar Toseeb And I suppose part of the reason why people might go through their childhood, for example, and you’re picking a lot more people up in adolescence, it could be awareness. It could also be that they present with other types of difficulties. Shaun Ziegenfusz Yes. Dr. Umar Toseeb So, what kinds of co-occurring difficulties will children and adolescents and individuals in general with DLD have, or likely to have, or more likely to have, and what are some of the things that DLD is not, or is it mutually exclusive? Shaun Ziegenfusz Hmmm, yeah. Well, I’ll start with what it – you know, what frequently co-occurs with is often, we’ll see that language and literacy are interrelated. This is something that in my doctoral research, we found came through time and time again, was, you know, the number one area that was consideration for stakeholders, such as parents and Teachers and Speech Pathologists, was literacy skills. And this comes through in the clinical work that we do, as well, whereby more often than not, I will be doing an assessment for DLD off the back of some concerns around literacy. And I think Teachers in particular are becoming better at identifying when children are struggling to read. We’ve got countries around the world who’ve got really strong legislation in place now about identifying literacy difficulties. So, one of the things that we can do, I guess, in our clinical research and policy work, is piggyback off this identification of literacy. We might call it specific learning disorder in reading, we might call it dyslexia. So, there’s lots of research to show that these two conditions often go hand-in-hand. If you were to ask me ten years ago, I would’ve said that a person with dyslexia couldn’t have DLD because it’s an exclusionary criteria. But we’re seeing some beautiful work by Suzanne Adlof and Tiffany Hogan that’s shown that actually having both diagnoses is really helpful for accessing services and supports. In my clinical work, I’d say that I’d see children with behavioural needs quite frequently, as well. Whether they’re behaviours that might challenge us. Certainly, there are behaviours that challenge me in the classroom and there are also behaviours that might look more like withdrawal behaviours, where they’re, kind of, pulling back, not participating in classroom discussions, maybe going to the library instead of the playground. And, you know, sort of, behaviours where they might look different to their peers, and of course, interplayed with all of that is their social emotional wellbeing. And so, I’d be remiss if I didn’t talk about the fact that we’ve now developed some really good understanding that DLD frequently co-occurs with difficulties in social emotional wellbeing, but one of the challenges that people with DLD face, of course, is that a lot of the therapies that we use are talking-based therapies. And if you don’t have language, you know, the ability to understand and use language like others, your ability to interact and participate in those therapies is, of course, going to be interrupted. So, I feel like that’s probably the first part. The second part was around what it’s not. So, one of the aspects of language, of course, is that language difficulties can be present with any number of other conditions. And, in fact, when the CATALISE papers, which were really seminal pieces of research that were published in 2016 and 2017 around identification and terminology, the recommendation was that we would use DLD to describe difficulties with understanding and using language for no known reason. And to use the term ‘language disorder’ when the cause is known, for example with autism, sensorineural hearing loss, intellectual disability, where these are neurodevelopmental conditions that are commonly associated with language. And I thought perhaps at the time maybe we were splitting hairs, you know, and really, kind of, questioned, “Well, do we need two separate terms? Is it a bit confusing? Could we just use language disorder or, you know, autism with DLD?” at the time. But what I’ve come to realise, through this work that we do in advocacy, in research, is the power of identity and that label is really about bringing people together and having a shared community. And if you don’t know the cause of your language difficulties, you know, using the term ‘developmental language disorder’, I often say we add the ‘d’ because we don’t know the cause, to the ‘ld’, you know, that actually having that identity where people can come together and understand each other and have shared experiences and actually engage in conversation, research, clinical practice, around this shared terminology, it’s really, really powerful. And I’m so thankful for Dorothy Bishop and the team with CATALISE, because that label has been so important and really effective in bringing people together from all around the world. Dr. Umar Toseeb And I think that the prevalence of DLD is, I think it was around 7%, I think is what we go for. Shaun Ziegenfusz Yeah. Dr. Umar Toseeb And I think one of the things that I find fascinating is it’s 7% of people who have DLD and that’s not people who have autism with language disorder or… Shaun Ziegenfusz Yes. Dr. Umar Toseeb …other things. It’s 7% of people will have DLD and that’s not a people who are autistic. Like – and it’s not the people who have… Shaun Ziegenfusz Hmmm hmm. Dr. Umar Toseeb …some sort of sensory impairments, etc., etc. It’s 7%... Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb …of people, or just over 7%, who have just – DLD is their thing. Shaun Ziegenfusz Hmmm hmm. Dr. Umar Toseeb And actually, the rest of the people will have other stuff going on, as well. Shaun Ziegenfusz Absolutely. I think if I was to look at Courtenay Norbury’s research in 2016, where we were looking at prevalence – and we’ve seen prevalence studies now. We’ve seen Bruce Tomlin’s research in the US looking at school entry. We’ve seen Courtenay’s publication in 2016, and others, of course. Many, many people involved in these massive projects, but you know, First Authors get right of way here. And then, more recently, in even Australia, we’ve looked at, with Dr Samuel Calder’s research, with the Raine Study data, that’s found, again, 6½/7%. But really interestingly, with the Raine Study data here in Australia, we found equitable distribution between boys and girls, which is a little bit different and, kind of, is, you know, counterintuitive to what we’ve seen in other epidemiological studies. And I think you were right in saying, like, it is really common. There’s some challenges with that. Firstly, from a clinical perspective, if I said to most Speech Pathologists or Psychologists who might be listening in, or even Educators, “Hey, if you’d have put everybody with a communication need in your space, in your clinical practice or classroom together, three quarters of those people should have DLD, based on epidemiological research, and a quarter have it associated with autism or an intellectual disability or hearing loss.” I would say that “Not only was probably the reverse true, where the majority of people that are being supported and – you know, identified and supported would be – you know, with other conditions, would far outweigh those with DLD.” So, that’s a really big problem that we have to face, that if the epidemiological research suggests they’re out there, we can extrapolate to say they’re probably undiagnosed. And the kids that I see would say, you know, “I felt like I was dumb or stupid and couldn’t read and, you know, behaved differently, and I felt lonely and scared.” And it was through understanding themselves with a label that they’ve come to really understand what their difficulties are, but also how we can support them. Probably if I was also to just take it a little bit further, because you’ll soon hear I – you know, I love talking policy. A lot of people don’t get into legislation and policy, as much as I love to talk about it. But one of the biggest challenges that we have around the prevalence data is when you start to look at 7. something percent of any population, that is a huge portion of the population that a) is under-identified, so services aren’t there supporting them. And as soon as you start advocating, most systems aren’t set up to support that many people with a neurodevelopmental condition. It’s actually easier, in some ways, if you’ve got a much less prevalent condition, that you can go in and advocate for funding because it might be a much smaller bucket of money. In Australia, we’ve got about 26/27 million people and if I go in and say, “Well, we need funding for about 1.8 million people,” and we’re a really small population with a large land mass, you know, if we start to then apply that in the UK and the US, it’s a really difficult conversation that we face. And that’s where I get stuck a lot with policymakers, is actually, “It’s too many people and what do we do about that?” So, I’m always interested, if anybody’s listening, in feedback or thoughts on that particular point. It’s a really interesting conversation to have. Dr. Umar Toseeb If we move onto the identification process. Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb So, I suppose if – let’s start from if we have a parent or a Teacher, for example, who suspects that the child might be – might have DLD. And I think we – you’ve talked a bit about this already. Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb What are some of the indicators that parents might want to look out for, or Teachers might want to look out for, or people who work with children on a regular basis? What are some of the things that people should look at and be like, “Yeah, that might be DLD. I should try and escalate this and refer this further”? Shaun Ziegenfusz Yeah. Well, I think it’s important to state that in many countries, Speech/Language Therapists, Speech Pathologists, Speech/Language Pathologists, are the primary diagnosticians. So, knowing where to go to access them, if you have concerns, is probably one point for conversation. In terms of risk factors, we can, kind of, group them into a few different categories. One of which is if your child isn’t making progress with their communication, particularly under the age of five, and you’re a little bit worried, particularly if you’ve got friends who’ve got similar aged children, cousins etc., and you’re going, “Look, they’re not probably saying as many words, understanding as many instructions, perhaps they’re not really putting stories together in the way that we’d expect them to,” that would be a really obvious, I think to a Speech Pathologist, flag, for getting them in for an assessment. Once we hit school age, we tend to see other flags that come up, one of which is, I’ve already mentioned, around literacy development. Often, difficulties with learning to read and language go hand-in-hand. Not always, but it is quite a common cause. Also, if a child is behaving differently, and this is a big one when I speak to schools, around if you’re referring a child for behavioural support, perhaps even as a part of your social emotional wellbeing support, consider a language assessment just to at least consider that language might be a part of the way in which we think about a child, because behaviour and communication go hand-in-hand. So, early milestones and listening to those, sort of, you know, words they learn, instructions they follow, putting stories together. And once they get to school, it’s probably more apparent with their learning, perhaps sometimes their social interactions. However, I’ve met some of the most pro-social little people with DLD and you wouldn’t think that they were struggling to communicate. But I’d be honest in saying it can be really tricky to pick up. It is an invisible condition. You know, these children do talk, but they just don’t talk as well and they look like everybody else. There’s no soft tissue marker where you see them and go, “Oh, I need to change the way I’m communicating with you.” So, that makes DLD identification doubly difficult in some ways. Dr. Umar Toseeb And I think also, one of the things that I’ve always thought about, is it’s not that these kids don’t develop language. They do develop language, and I think it was – it’s Courtenay Norbury’s work… Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb …I think, that shows that they do develop language, even primary school, and even maybe… Shaun Ziegenfusz Hmmm hmm. Dr. Umar Toseeb …at the same rate as those who are typically developing, but they maintain a gap. They maintain the gap. So… Shaun Ziegenfusz Yeah. Dr. Umar Toseeb …you might find that these children are going through primary school and their language is getting better, but there is a gap… Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb …still. So, I think even for the fact that they are getting better in their own language ability, the fact that there’s a gap between… Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb …where they should be, I think is also something to think about. Shaun Ziegenfusz Yeah, absolutely. I think it was actually a presentation I sat in on Gina Conti-Ramsden many, many years ago, more than ten years ago. She happened to be in Australia and said, “We often think about typical development being,” if we were to, sort of, put it on a graph for our listeners, you know, “on one axis we might have skill and one axis we have time. And we often envisage it – typical development being, like, a 45° angle. Like, they just keep on getting better and better and better. But actually, if we were to, sort of, view typical development as a flat line and that we get the right amount of skill acquisition at the right amount of time, we’d often see, for typical language users, or peers without DLD, this, sort of, flat line for language. And then, for kids with DLD, if we track their language skills across their lifetime, there’s always a gap. They just never catch up.” In the same way that we wouldn’t expect, all of a sudden, somebody who has a physical disability, to all of a sudden, completely change their – you know, no longer needing to use a wheelchair or to no longer need to use a hearing aid. I think we still have, in some circles, this perception that because their language is improving, therefore, you know, they’ll eventually need – they’ll just eventually grow out of it. But it’s not entirely true, because they do progress with language, but there’s still always this gap and it’s our role, perhaps not to have – you know, I used to think I was a terrible Clinician because all of our goals were age-appropriate oral language skills, or age appropriate vocabulary and then, they never did it. And I thought, oh my goodness, I’m a really terrible Therapist. I’m really bad at my job. But it would be the same as saying, you know, “Okay, now let’s get out of our wheelchair,” or “Let’s get rid of our hearing aid because you have had enough of that now.” You know, there’s always going to be this gap. And really, my role is about creating an accessible environment and working with communication partners so that they can support them in those exchanges, rather than curing them of DLD. And that’s why I love this, you know, Social Valorisation movement, you know, neurodiversity affirming practice, is we’re acknowledging that people are just born different and language – difficulties with acquiring language is just a way of being born differently. The problem isn’t the person. The problem is the environment and the systems that sit around them that just don’t even think about language. Dr. Umar Toseeb Thank you, and so, I’m just going to move onto mental health. So, we know that young people with DLD, on the whole, there’s lots of variability, but on the whole, they will have poorer outcomes in various aspects. Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb So, like, education, employment, crime and offending, those kinds of things. But we also… Shaun Ziegenfusz Yeah. Dr. Umar Toseeb …know that they tend to have poorer mental health, so being the depression, anxiety, emotional difficulties, but also, behavioural problems. Shall we talk a bit about what that looks like? What are the things that people with DLD experience differently or experience in terms of their mental health? Shaun Ziegenfusz From my own research, probably the number one area that seems to come through is problems with peers. Interestingly, children with DLD can be as pro-social as typical language users or non-DLD peers, so they actually want friends. And one thing I didn’t point out earlier, as a part of the diagnostic process, is they don’t have an intellectual disability. They might have low average, average or above average cognitive skills, but they have difficulties understanding and using language. So, often, the children I see and work with will be aware that they’ve got difficulties, but in my research, the number one area that seemed to come through was they wanted friends, but they couldn’t maintain those friendships. They would seek them out, but really didn’t know how to handle it. And often, things like the rules of the game moved really quickly and so, they couldn’t follow the changes in the game and got frustrated, or friendships evolve and things become cool or uncool and they can’t follow along with that. So, all of the children that I’ve, you know, worked with across one particular study reported that peer problems was their number one area. Which of course, if you’re struggling to have friendships, it’s going to impact on your mental health, a lot of – especially when you’re as pro-social as your peers in this particular case. If we then start to think about anxiety and depression and other conditions that face the general population, these are conditions that impact everybody. People with DLD are just as likely, as the general population, to experience those mental health conditions, but actually, their DLD exacerbates that. They’re less able to engage in support strategies, proactive or preventative strategies that they might be able to use. So, you might be in a classroom setting or an employment setting that is quite open about talking about it, but people with DLD often will say things like, “I feel like the words are just washing over me. I’m not really getting it.” So, you might be putting them in place, but they’re not actually benefitting and understanding from those more broad supports. And then when we get to an individual-based support, when things are really starting to need intervention, we do it through talking, and talking is the one, you know, one key area that they really strug in – struggle with. But I’m really excited to see that we’re starting to see some research coming through on how to adapt, say cognitive behavioural therapy, for people who have language difficulties and how do we make that more accessible? I’m really excited to see that research coming forth over the next couple of years. Dr. Umar Toseeb Part of the underlying thing about talking therapies is – I think it’s – Hannah Hobson did some work on this around the ability… Shaun Ziegenfusz Yes, she did. Dr. Umar Toseeb …to recognise and label emotions. Shaun Ziegenfusz Hmmm hmm. Dr. Umar Toseeb And we know that young people with DLD might struggle to recognise and label the emotions that they are experiencing, and I think that might be the beginning of being able to seek support. If you don’t recognise what you’re experiencing and be able to put a label on it, then you can’t seek support. Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb And then – and even if you can, then difficulty with your own language means you probably can’t access the support that’s being offered. What is there… Shaun Ziegenfusz Yeah. Dr. Umar Toseeb …around helping young people with recognising and labelling their emotions, in the first instance? And then secondly, are there alternatives to CBT, ‘cause I often see papers or calls for research proposals on alternatives to mental health support for autistic people, for example? Shaun Ziegenfusz Yes. Dr. Umar Toseeb So, is there stuff going on in the DLD space around alternative mental health support that don’t rely on oral language? Shaun Ziegenfusz Feel like I should be flipping this question and asking you more so than anybody else, having just recently read your book, you know. I think that there’s a – there’s probably some conversation here, rather than me monologuing. In terms of recognising emotions, certainly, I see in clinical practice that that’s an area that Clinicians are aware that people with DLD often do struggle with. So, labelling and identifying emotions is important. However, emotions extend beyond happy, sad and angry and that we actually need to provide explicit instruction around the complexity and depth of emotion. Part of that can be sharing how – making things that are implicit explicit. I often talk to my clients and say, you know, “I’m feeling really hungry and that’s making me a bit cranky. I might just grab a snack or a drink of water or” – you know, talking about it. And they’re like, “Oh, I sometimes feel like that, too.” So, even just being a little bit willing to share how you’re feeling, making that implicit discussion more explicit, is helpful for them. But I think what I see is this gap around depth and humanity is – got a depth of emotion. And so, we often don’t extend into that depth and if there are Clinicians listening, and I’d encourage them to reflect on their own teachings around that and how we can work on that. I think there’s also a challenge in that Speech Pathologists are the primary diagnosticians of DLD. Most of the research we have is around providing direct intervention by Speech Pathologists. However, many people with DLD will require multidisciplinary support. So, in part, some of the mental health-based supports that a child with DLD, adolescent adult with DLD, might need, might actually sit outside my scope of practice. And I think I need to recognise that sometimes and go, well, how does speech pathology intervention intersect with mental health-based supports? And you’re right, there is research coming out in how to support autistic people that don’t rely on some of these more talking-based approaches. One strategy that I’ve been seeing coming through in my own work, and I’ll talk a little bit about some co-design that I did just recently, whereby – and we looked at visual supports. And in fact, visual supports are a really simple strategy for lots of neurodiverse people. They’re particularly powerful for people with DLD, because if you think about it, language is very fleeting. And I often will say, and people who have heard me speak before, will hear – you know, hear me say this all the time, “If we can make language something that’s tactile, something we can touch and visible, something we can see, it makes it something that’s concrete, that we can interact with.” And visual support is such an easy way of creating a concrete representation of language. So, whether it’s in drawing, you know, I often use cartoon cells and we draw something out, or whether it’s in a visual support to help with comprehension, it creates a concrete representation of language. When I went through a co-design process with some autistic teenagers with language disorder recently, this was in getting the teenagers to design visual supports for adolescents with DLD. ‘Cause trying to get enough adolescents with DLD to participate in research is hard enough as it is, so I didn’t want to chew up my pool. But we got these wonderful autistic teenagers with language disorder to actually design the visuals for the study and watching them work was fascinating. And they ended up settling on using emojis, which I wouldn’t have picked as my visual support strategy, but because it’s on their phones and it’s something that they use routinely, they ended up creating this great five-point scale with a happy and a sad face that actually had a coloured gradient on it. And so, it went from green to red and for them, it really represented that there is not just block colours, but this, sort of, gradient of feelings about something. And we utilised that in our study with 11 adolescents with DLD about their experiences at school and all of the participants said that they found the visual really, really helpful, because when you’ve got DLD and you’re struggling at school, by hell it’s hard to then participate in research to talk about it. And I think that when we’re looking at designing these mental health supports for people with DLD, I think it’s going to be something we have to consider. Dr. Umar Toseeb Thank you, and I suppose the reason for International DLD Awareness Day is to raise awareness. What… Shaun Ziegenfusz Hmmm. Dr. Umar Toseeb …are some of the efforts that have been made to raise awareness of DLD, that you’re involved in, but also, that you might not be involved in, that you know about? Shaun Ziegenfusz DLD Awareness Day was started in 2017 following the publications of the CATALISE consortium papers. The original group was called RALLI, R-A-L-L-I, and I have to take my hat off to the RALLI, then RADLD, R-A-D-L-D, Raising Awareness of Developmental Language Disorder, team. They did such a fabulous job of just getting people talking about DLD. And at that point, they felt like they had done what they set out to do and they contacted a wonderful colleague of mine, Stephen Parsons, who’s at NAPLIC in the UK, and said, you know, “We’d really like to hand this day and RADLD over to you to see what, you know, you can do with it.” And I still remember getting a call from Stephen, he’s an Australian Speech Pathologist based in the UK for a very long time. And he rang me, and I was sitting out in front of work, and he said, “Oh, my gosh, what can we do with this opportunity?” And we’d only ever connected through social media. We talked about the idea of having this international group, because at that time, to be honest, DLD and even SLI, was still something that was very UK-centric and we really wanted to bust out of that UK-centric to a truly global perspective. And so, RADLD was formed as an international committee, with representation from many countries around the world. We started with, I think there were four/five of us, and it’s continued to grow, with membership changing. And at the moment, we’ve got representation in Australia and a colleague who’s from Hong Kong, you know, Canada, UK, US, and also committees then that have national committees that represent different countries around the world. So, each year, we have DLD Awareness Day. It’s the third Friday of every October, and each year we have a theme. This year’s theme is “Speak Up for DLD,” and we’ve had many, many, many wonderful themes over the different years, since then. And the focus is really around activating the DLD community to share. We know from a paper by Jae-Hyun Kim, that here in Australia, he – Jae is at Macquarie University, that less than 20% of the general population have heard of DLD, compared to 90-95% of the population who’ve heard of autism, dyslexia, ADHD. So, we’ve got a long way to go to have that more population level understanding, or even having heard of DLD, ‘cause if you haven’t heard of it, you’re not likely to do anything differently when you meet someone with DLD. So, some of those international days have just been phenomenal. We’ve had Niagara Falls lit up, light up locations from all around the world, just to shine light on the fact that there is DLD. And you see amazing events, like symposiums, around research into DLD that are hosted in local networks in different countries. You see popup picnics where they bring people with DLD together. We’ve got marathon runners. You know, DLD awareness raising can be as simple as seeing a post about DLD and the hashtag is #DLDday, you see a post and you share it. And I often say to people, “If that is as active as you are in raising awareness of DLD, that’s phenomenal in my books.” So, we often have, you know, amazing reach on DLD Day, with, you know, millions of people interacting around the awareness day, but still, we’ve got a long way to go before DLD is recognised alongside other neurodevelopmental conditions. Because it’s through recognition that we actually get the policy change, the funding change, that we need to best support people with DLD. So, DLD Day is really, in my books, a really big deal, but we can celebrate DLD Day any day of the year. We can always talk about DLD. Dr. Umar Toseeb And I think the raising awareness efforts are working, as in it’s very anecdotal for me, like, and I haven’t done research on awareness, but I know that when I’ve – like, in 2018, and when I started my current job, around that time, when I did talks on DLD, I’d always start by asking, “Who’s heard of DLD?” And I try and do that still and the numbers of people who raise their hands, as the years have gone on, has definitely increased. But that is – like, I mean, that’s academic circles, but I don’t know what that looks like in the general population, but I imagine it’s probably similar. But in – definitely in academia, in psychology circles, people are more aware of DLD and have become more aware as the years have gone on. Just to – if people want to learn more about DLD, what resources would you recommend? Shaun Ziegenfusz So, there’s some really great information available. If you are just wanting to come to understand a little bit more about it, check our radld.org, Raising Awareness of Developmental Language Disorder. It’s the international group that I’m very, very, very fortunate to be a part of and we have some great resources, videos, amazing YouTube channel, that people can go on and check out. Of course, there are other organisations doing great local work. I am the Co-CEO and Co-Founder of the DLD Project, which is the peak national body for DLD in Australia. People can come to visit the dldproject.com and we’ve got information, resources and training all around DLD. Used to be very Australian focused, but we now get hits from all around the world. So, we tend to be a bit more, you know, global in our – even our perspective, but one thing you’ll notice on our website is you’ll never see people with DLD portrayed as sad or suffering. We really celebrate people with DLD. So, we always promote it as yes, it’s different, but people with DLD are amazing, phenomenal people, and, you know, you will see that in our materials all the time. And if you’re interested, we also have our own podcast, called the “Talking DLD Podcast.” I’ve been a little bit lax, over the last few months, while I’ve been working on my PhD, but we’re about to ramp up with some great new episodes, so check those out. There’s also DLD and Me, which is an organisation of Academics in the US. They release some really fantastic blogs and summaries that people can access and share. There’s also, of course, NAPLIC in the UK, which is a professional association around language impairment, really bringing Educators and Clinicians together. And if you’re interested in research and perhaps even recruiting and connecting with family and people with DLD, Engage with DLD is a amazing group of academics from around the world who are really trying to, a) make research accessible for people with DLD and those supporting them, as well as connecting Researchers with people with DLD. ‘Cause at the end of the day, the – what we really want to do is continue to push our understanding of how we can best support people with DLD, and we can only do that together. Dr. Umar Toseeb And finally, what’s your take home message for our listeners? Shaun Ziegenfusz I think it’s been said a few – in a few different ways, but DLD is one of the most common neurodevelopmental conditions that people will face. If you see a person who is struggling to communicate, struggling at school, maybe they have difficulties with their behaviour or their mental health, if you can just think that language might be a possible cause, it may mean that somebody who previously wasn’t identified, will be identified and get the right support. And the stories that I am so privileged to hear from people with DLD, and this is coming from a background of being very anti-labels and the idea of, you know, labelling people and “Why do we need labels?” has been that when you listen to people with DLD share their experiences, where they’ve come to understand themselves and what their needs are. You know, I’ve had children who’ve been on the brink of their mental health. These are children who I did not think would be able to come back from where they were, in a very dark, scary place. And it’s been through a very supported identification process and explaining to them what their condition is, they’ve gone on and completed their high school studies. They’re gainfully employed, happily in relationships. And I think for me, it’s their success that continues to drive me forward, so that people with DLD can be identified and supported and live their life of their own choosing. Not just the one that’s laid out for them when they don’t even know what’s going on. Dr. Umar Toseeb Thank you so much, Shaun. Fascinating conversation. For more details, please visit the ACAMH website, www.acamh.org, and Twitter @ACAMH. ACAMH is spelt A-C-A-M-H, and don’t forget to follow us on your preferred streaming platform, let us know if you enjoy the podcast, with a rating or review, and do share with your friends and colleagues.