What is Developmental Language Disorder?: a discussion for DLD Awareness Day 2023

For Developmental Language Disorder Awareness Day 2023 we pulled together a panel of two people living with DLD and a professor who is an expert in this field and one of the founders of the awareness day. 

We cover:
- What is DLD?
- Why is it important to get a diagnosis?
- What is tricky about living with DLD?
- Is there anything good about it?
- What can help?
- What needs to change?
- What is the focus of DLD Awareness Day 2023?

Interviewees:
Ioan Berry,  a young man with Developmental Language Disorder
Sophie Franks, dedicated RADLD Ambassador and adult with DLD
Professor Courtenay Norbury, Professor of Developmental Disorders of Language and Cognition Psychology and Language Sciences, UCL

Resources:
RADLD - Raising Awareness of DLD Day
RCSLT DLD factsheet
RCSLT DLD clinical information
Me and DLD: Living with a hidden disability
Giving Voice Twitter takeover by Ioan Berry, 2021
DLD DAY 15th October 2021 (Developmental language disorder) Sophie’s DLD in Adulthood
Speaking up for developmental language disorder: the top 10 priorities for research

The interview was produced by Jacques Strauss, freelance digital producer.

Please be aware that the views expressed are those of the guests and not the RCSLT.

Please do take a few moments to respond to our podcast survey: uk.surveymonkey.com/r/LG5HC3R

Transcript

Transcript Name: 

dld-awareness-day

Transcript Date: 

18 October 2023 

Speaker Key (delete/anonymise if not required): 

HOST:                         JACQUES STRAUSS 

SOPHIE:                    SOPHIE FRANKS

IOAN:                      IOAN BERRY

COURTENAY:            PROFESSOR COURTENAY NORBURY 

MUSIC PLAYS: 0:00:00-0:00:09

HOST:                         0:00:09 Welcome to another episode of the RCSLT podcast. My name is Jacques Strauss. 

This episode is being released on 20 October, which is DLD, that is, Developmental Language Disorder Awareness Day. We are really fortunate in having put together a great panel to discuss DLD. We have two guests, Sophie and Ioan, who both have DLD, as well as Professor Courtenay Norbury of UCL, one of the founding members of the RADLD Organisation, which stands for Raising Awareness of Developmental Language Disorder, which started DLD Awareness Day. 

Today, we are really going to look at why it’s so important to raise awareness of DLD. I started by asking the panel to introduce themselves. 

SOPHIE:                     0:00:58 Hello, my name’s Sophie and I’m an adult with DLD. I live in the south coast, in [Worthing 0:01:06]. For a living, I work with children with special educational needs, and I just like to raise awareness to DLD. 

IOAB:                       0:01:19 Hello, my name is IOAN, and I am also an adult with DLD. I’m 22 years old, and I attend university in South Wales, and I’m currently serving a two-year service mission, volunteering different places. And yeah, I’m just here to also share and spread awareness on DLD. 

COURTENAY:            0:01:44 Hi, I’m Courtenay, and I’m a professor at University College London, and my research is all about DLD and its impact on people’s lives. 

HOST:                         0:01:55 Courtenay, can you tell us what DLD actually is. 

COURTENAY:            0:02:02 It’s a condition in which people aren’t able to learn language in the expected way. And we know that it’s a biological condition, so we know that there are genetic influences on how the brain is developing, that makes it difficult for young people to learn from the usual input. Usually, young children learn because people are talking to them and that helps them learn words and sentences and stories and conversation. But in the case of DLD, something’s not quite right with how the brain is developing and it makes it hard for them to do that. 

And so, as a result, children and then adults with DLD can have difficulties understanding and remembering what people say to them, and they can have difficulty formulating words and sentences to get their message across, and this can make it difficult to learn and to interact with others. And so, it can give some real challenges for everyday participation. 

SOPHIE:                     0:03:06 There’s other things as well that people with DLD find hard. The little things, like word-finding, not being able to find the word. 

Actually, I was at the doctor’s today and I was trying to explain to the nurse about a computer system in the waiting room and I called it ‘the thingy’. She went, ‘What’s the thingy? You’ve got a bit a bit more clearer than that.’ And I said, sorry, I have a language impairment. 

Just little things all the time – reading and writing. 

IOAN:                       0:03:42 I think sometimes also there’s a difficulty with an understanding what is said by people. Sometimes that could be in what they’ve said in particular, whether it’s instructions – just generally understanding what people mean, sometimes how they mean it as well. There’s sometimes a miscommunication or misunderstanding with what is being spoken to them. 

HOST:                         0:04:06 Sophie, can you tell me a little bit about how you came to be diagnosed with DLD.

SOPHIE:                     0:04:13 My parents noticed I wasn’t reaching my milestones. I think, before I was three, I wasn’t talking, I wasn’t communicating, and my understanding was very low, so my mum took me to the GP and I got diagnosed. Well, back then it wasn’t called DLD, it was called a language problem or language impairment. I got diagnosed when I was three years old. 

I’m quite impressed about back then there was actually a nursery actually for children with language problems and language impairments. So, I used to attend there every morning – a school in Worthing, it was called John Horniman. Sadly, it’s not there anymore, which is a real shame. But yeah, I got a lot of support there. 

HOST:                         0:05:17 IOAN, what about your diagnosis?

JOHAN:                       0:05:19 My diagnosis was just a couple years ahead, beyond [a bit 0:05:23] three or four. It was round about when I was in reception, so about either five or six years old. And similar to what Sophie mentioned, my parents noticed that I wasn’t really speaking as much or communicating, and they noticed I’d be very quiet, and sometimes would feel like… or look and appear as if I’m not really focused as much. 

At first, they were worried. It’s like, is this a hearing issue? Was this a hearing problem? So, they examined a lot of the ears and hearing generally, and then they started to dig deeper, and it was brought up that this might actually be DLD – or back then, specific language impairment. 

So, from that point on I got the diagnosis, and immediately I was given loads of support in school, and they started to tailor… to get me out of mainstream, at least for a time being and more into a specialist environment in education. So, I started to move from into primary schools that had speech and language centres that would tailor to my needs. 

HOST:                         0:06:33 Sophie, so you were obviously very young when you were diagnosed. But how did and still does that diagnosis impact you? 

SOPHIE:                     0:06:43 Having a diagnosis back then, obviously, like you said, I was too young. But because my mum and dad were on the case, I always felt very supported in education. I don’t think I had those spouts of anxiety unless it came to out in the public, outside of school and stuff like that. 

But it has become helpful over the years to explain to people because I used to keep it a secret, and never say anything to anyone in interviews or workplaces. So, it is better nowadays that I can actually be more open over it and have that diagnosis so people know what I find hard. 

HOST:                         0:07:26 What about you, IOAN? 

IOAN:                       0:07:27 I’ll get this out the way straightforward, I am still a bit of an anxious mess! I’m not going to sugarcoat and say that having a diagnosis really made all this go away, because I think there have still been moments where I’ve either had doubts about myself and my abilities, even with just communication and with language. But it has brought a lot of clarity to really understand what’s been going on. And I think it’s also given me that patience to just slow down and process how I can, where I can, and understand a bit of myself in terms of skills and in strengths. 

I never kept my diagnosis with DLD a secret. But also, I never really wanted to focus on really sharing it for a lot of times. Like, it’s a part of me, so what? But the more I’ve gone around into different environments in school, university, at work, I’ve started to realise, yeah, it’s really not only helpful but necessary to ensure that we’re making sure people are aware that these needs need to be met. To say that, yeah, I have problems with communications, with language, please be patient with me. Can you repeat this? Can you help me out with this? Is there anything we could do to help with that? 

HOST:                         0:08:45 So, Courtenay, from a clinical perspective, why is diagnosis so important? 

COURTENAY:            0:08:51 Yeah, so I think Sophie and Johan have done a really good job in hitting the main points. Sophie noted that it’s actually quite a good ticket to services. You can’t argue that children need support if we don’t have a unified way of describing what it is that is going on and what supports they might need. 

We noted in terms of research several years ago that DLD is really underfunded relative to other conditions like autism or ADHD. And one of the reasons for that is because we didn’t have a unified diagnostic label that everybody uses. And so, we worked hard to get some consensus on what that should be. 

The more that we diagnose, the more people become aware that this is a condition and what its impacts are, and then we can argue for more and more equitable services. 

We still have a problem with underdiagnosis at the moment. And that’s unfortunate, because as both Sophie and Ioan said, many people find it helpful. We’ve heard adults say to us, I just thought I was stupid, and actually, now that I know that I have DLD, I know that I’m not stupid, I just have something that makes it harder for me to participate in communication, and now that I know what it is, it helps me to understand the things that I find challenging, and it helps me to have a way to start talking to other people about what they can do to help me and what things I do well, and what things I have some challenges with. That’s really important.

Sometimes we think that that DLD is just a thing that speech and language therapists should need to worry about. But actually, it’s much bigger than that. Sophie talked about going to the GP. We need language to go to the GP. Johan talked about having some social anxiety. Very many people with DLD need to access mental health services, and yet, they’re not set up to support people with language and communication disorders at all. And so, by having this diagnosis we can start that dialogue with other professionals, education, and we can start to have a common language for explaining what DLD is, how they can help, and this really supports advocacy and self-advocacy. 

One of the best things about DLD Day and our raising awareness efforts is that label enabled adults from all over the world to say, ah, that’s me, that’s a problem that I have, and other people have the same experiences and maybe we can talk to each other about that. It’s a way that young people have found to find each other and support each other, and that’s been a really heartening thing to see. 

HOST:                         0:11:41 For those listeners who are not speech and language therapists, how effective are the interventions? 

COURTENAY:            0:11:50 It’s such a difficult question to answer, because one thing I would say is, what do you mean by ‘effective’? We know that language interventions don’t cure DLD – ‘cure’ in inverted commas, whatever that means. Johan and Sophie both had intervention, they’ve both had a lot of support, they have improved their language a thousandfold. You can have conversations and really enjoy talking with them. But they, as they both say, still have some challenges. 

So, our goal is never really to make the DLD go away. Language interventions tend to do a couple of things. One, they try to give young people more language skills, so they will teach them new words, they will teach them sentence structures, they will give them lots of practice in using language for conversation, for telling stories, for doing essays at school, that kind of thing. 

But they will also do some other things. One is they will give them strategies. We’ve heard Johan and Sophie say things like, I tell people they need to slow down, or I give myself more time. So, they help people to be able to say, oh, I don’t understand that; could you say that again? So, a lot of it will be around strategies to maximise communication. 

And the other thing that good interventions should do is work with other people in the environment – giving strategies to parents and families to help kids to develop language, but also to facilitate communication, and to teachers and hopefully other health professionals as well, including those mental health practitioners, to say what aspects of language in your lesson or in your therapy session are going to be really challenging for young people? It might be, don’t ask so many questions. It might be, break this instruction down and get them to do one thing at a time rather than making it very complicated. Maybe it’s use more visuals, so they can see, or write things down so that they can remember what’s been said. 

The main tenets of intervention are to provide more language skills for the young person, help them develop strategies so that they can maximise their communication, and work with other people in the environment to foster better communication. 

HOST:                         0:14:13 Sophie, what’s the trickiest thing you would say about having DLD? 

SOPHIE:                     0:14:20 Getting people to understand and have patience to understand what DLD and have the time to listen. Because often in workplaces, where I am, it’s very hustle and bustle and you haven’t got time to talk. I think that’s really important. So, trying to be as good as everyone else in the workplace, being able to do the paperwork that they can do and I can’t do it. Understanding stuff in the workplace. 

Even interactions with children. Like the other day, I was working in a class and there was a lot going on and there were some children that had behavioural problems and there was a lot of noise. And the teacher said to me, Sophie, could you get the children to do something, please. And I’m only cover, and that was, well… that was too much for me. I think it’d be too much for a lot of people. 

Ioan:                       0:15:30 I remember when I was much younger – this is an interesting story – but there was one time we were staying at a Premier Inn hotel. Yeah, so just staying at a hotel and I had some rubbish that I wanted to put in the bins, but I couldn’t find it anywhere. So, I asked my mum, where’s the bin again? And then she just casually said, not realising the full ramifications, but just said, oh, it’s under the kettle. My young innocent self decided to lift the kettle up from its stand and check underneath, to try to be like, how does this thing work, not realising that the bin was under the shelf where the kettle was. And so sometimes there can be funny stories, like that one of just not getting the point, but also not fully reaching there to understand what’s being said. 

Again, this could be with instructions, this could be with just… even in conversations. I could be having a great conversation with someone and in the middle of it all, I’m finding difficulty to catch up and process what’s being said. And I’m lingering on just one point, instead of being able to understand and comprehend everything that’s said. So, I won’t be able to really focus on everything that said, so I’ll only just have like one tidbit. 

Likewise, sometimes I’ve noticed, on the other side, I could go on and on talking about something, whether I’m focusing on one point and I’ve already covered the gist of the point, but I like to expand upon it and I’m losing the focus of everyone around me. I would say it is a lot of the just the communication and that focus, and with that the confidence. 

SOPHIE:                     0:17:13 Often as well I find tricky is that someone will be talking and explaining something, but my mind completely switches off, and I’ll be thinking about something completely different. And then I get myself in a pickle because then they’ll go, Sophie, so what do you think of that? And you’re like…! So yeah, especially when you’re in the workplace, it’s like, oh, they must I’m silly or stupid or something if I haven’t listened or paid attention, so that can be really hard. 

HOST:                         0:17:53 You were both diagnosed fairly young and got specialist support, which obviously was very important. But you also both said that there were periods afterwards when things got a bit tricky. Starting with you, Sophie, I wonder if you could just tell us a little more about that. 

SOPHIE:                     0:18:10 When I left [inaudible 0:18:11] school at 16, you were just left to get on with it. I went to the local college. I was on a special needs course. It was a bit of everything – hairdressing, I remember doing stained glass windows! Bit of cookery, floristry. But it wasn’t a course for people were DLD, it was a course for people with all different backgrounds. So, I did get bullied at college. There was a lot of horrible things said to me. Maybe back then I was only 16 and I took it very literal. But I think when you’re being wrapped up in cotton wool for most of your life, you get very upset about these things. But I did a work experience in a nursery and they were impressed with my work and asked me if I wanted to be an apprenticeship... do an apprenticeship there in early years, which I did. Still kept my DLD quiet and struggled on the way. I think I opened up a little bit to my assessor and she was helpful. She did a lot of writing when I spoke because she’d write it for me, so that was kind. 

But there’s been really, really big struggles in the workplace for me. Being told that I don’t concentrate, I don’t interact properly the way I should with the children, I don’t listen, I’m often daydreaming. I’ve been bullied in the workplace where people don’t talk to you because they know you’ve got a disability, which is a horrible feeling. Or they report you a lot for not doing things or they don’t come and talk to you personally, they’ll go to management, and then you’ll get pulled into a room, and then for me that’s a very upsetting experience. 

And actually, I kept a lot of that to myself because I didn’t want to let my parents think I was failing in the workplace. A lot of it, I didn’t really tell anyone, I used to keep it to myself. Because I used to think, if I was to tell my colleagues in the workplace what had happened, they may just think, yeah, they’ll probably agree. And then I feel patronised that they’re probably trying to support me, but that they actually agree what they say. 

At the moment, I’ve got two jobs and I take children in the minibus to their special schools, and I work with one other lady who’s the driver, so I’m the PA, and she’s really supportive. And it’s just me and her. And I can just be who I am. 

And then my second job is actually working in a school, so I work for an agency and I’m in different classes. And I was saying this the other day about that being a good thing, because people can’t get to know me if I’m in different classes. People can’t get to know me, because then they can’t get to know what my disability is and what my thoughts are. They only learn a little bit about me before I really settle in there. For me, at the moment, that’s a really good thing. It scares me and I have great anxiety in the workplace, still. I overthink things, if someone said something to me or... I misunderstood something the other day. I said to someone, I asked a question and I said, oh, does this gate push or pull because it was a bit stiff. And they told me it pulled, and I got confused at that and pushed, and I was pushing back and forth. And she said to me, I’ve told you it’s pulled, like that. And I said, oh, sorry. I said, I do get confused at times. 

But like I said, I’m in that busy environment where people haven’t really got time to listen to you. But if people knew what DLD was, I wouldn’t have to worry about that. And people, hopefully, would be more understanding. 

HOST:                         0:22:42 Thank you for being so open with us. It can’t be easy. And it’s very generous of you. I think it really highlights the importance of awareness and the struggles that people with invisible disabilities have. 

Ioan:                       0:22:58 My experience with school and definitely support through that is like a mirror opposite to Sophie. I was, at first, mainstream, and then when I got diagnosed, they started to integrate me more and more into specialist schools, especially in primary school, as I mentioned in speech and language centre. And I think that was the environment that really got me to understand myself better. That was the environment that got me to really understand my diagnosis with DLD as a whole. Because for a long time, especially because I thought it was a speech and language problem, but then it was then clarified ultimately that it’s just a language problem, there is nothing more, nothing else to it. 

It really got me to look into what I want to do with interests. It was one of those places where I actually found I enjoyed being creative. I preferred looking at visual communication, visual language, and not just oral language in a sense, and it really made things easier for me to really understand and process and register all sorts of things – things that really helped me to develop as an individual. 

Then when I went to secondary school, I had went mainstream. Let’s just say almost everything that was worked for in that specialist school almost went out the window! It was quite a battle with quite a few teachers and a few specialists and individuals who really didn’t understand it. Because for a lot of time they were trained a lot more with other disabilities, with other needs that needed… and not as familiar with DLD. And so, they were trying to backpedal and be like, let’s approach it as if it were this. And it’s like, no, we need that. 

So, struggles like that alongside obviously stuff like bullying. And I think also a general difficulty in understanding people. Especially during those years at secondary school – anyone can really feel that when they’re trying to find out who they are, who they belong… they’re figuring stuff out and continually do so. 

It’s an added challenge to have to experience that alongside not being able to understand what people say, what people mean, trying to understand what you are saying and meaning sometimes! Again, I would use a creative outlet to express myself. Sometimes I got into trouble, but that’s only a sometimes, because the rest of time I decided to use an art subject as my excuse, and I got away with it! 

But then when university started to roll back around, there was a lot more of that independence that opened, and I really wanted to focus on that creative outlet. And there, there was a lot more of a general understanding and openness to learn from lectures and from specialist staff, who obviously weren’t as familiar or as trained in that environment, but were willing to learn. And yeah, they were able to provide for general care, mental health, as well as obviously just making sure on an educational level that those needs were provided. And it was… created a very safe space to really be open and express and develop. 

COURTENAY:            0:26:28 I just wanted to say, they’re such powerful examples that you’ve both given. And it’s interesting to me that our politicians and many other people really prioritise early intervention. And I understand that, and it’s important that we can intervene early. But I find it quite distressing that, actually, the allocation for speech and language therapy probably halves when young people go into secondary school, because we think we can’t change language anymore, and the support for adults is pretty much non-existent. And yet, the challenges just get bigger, and they have more of an impact, I think, on people’s wellbeing. 

If I could do anything, I would try to get the powers to be to understand that, and to understand that supporting young people through that secondary school period and into the transition for work could save us enormous amounts of money down the line, and also improve your quality of life enormously. I think that’s really important. 

HOST:                         0:27:36 Courtenay, I wonder if you could tell us a little more about DLD Awareness Day. 

COURTENAY:            0:27:41 We started DLD Awareness Day in 2017, and I have to say, the response to it has been far greater than I think any of us ever expected it to be. It’s now a truly global phenomenon. There’s an international committee. The theme this year is DLD around the world, and I just am so humbled when I see people from all over the world sharing their stories and their experiences. RADLD has just been an excellent forum for people to come together and raise that awareness and share their stories. So yeah, I just think it’s a terrific thing. 

HOST:                         0:28:28 Sophie, I understand you’ve made the TikTok videos. Could you tell us a little more about that? 

SOPHIE:                     0:28:31 I just think it was about raising awareness. TikTok is a big platform, and I was hope- I still hope now that that big platform will get people to understand DLD. I just started off explaining, really, about what DLD was. And then I just did little comical videos as well. This is all these jokey videos, so I’m planning to make some more in the next couple of weeks, ready for DLD Day. I look forward to doing that. 

HOST:                         0:29:13 And Johan, you’ve created a YouTube video. 

Ioan:                       0:29:15 Yeah. I did a video a few years ago, this was back in the ye olde Covid days, [inaudible 0:29:22]! I’d actually just finished my first year of uni, and I wish I could say there was a divine inspiration that came along, but in truth, it came about from a boredom and an itch to try to do something new. And then when I heard that the DLD Day was coming around I figured let’s try something new, let’s bring an awareness. 

So, I made a video on my YouTube channel called ‘Me and DLD, living with a hidden disability’, which is as unedited as possible video of me just explaining what DLD is about, what impacts it has, sharing a lot about my experience. 

The year after that, I did a Twitter takeover for DLD Day. Again, [inaudible 0:30:14] exploring a lot more of my story, my experiences, and also hearing perspectives from family members and from trained and qualified professionals who have had experience with me and with DLD generally, just getting more of an insight into what it is like living with DLD and the struggles that you come through. And also, what insights you’ve gathered from living with something that’s like DLD. 

HOST:                         0:30:40 So, Courtenay, I guess this was the intention behind DLD Awareness Day – getting people who actually have DLD telling their stories, rather than just the clinicians telling us what we need to know?

COURTENAY:            0:30:53 Yeah. When we first started, we thought we would do academic lectures. We had the good fortune to come across Natalie [O-r-a-n-g-e 0:31:00], who said, do not do that! One- or two-minute videos, make them fun, make them catchy. And so, our goal was to try and share our expertise. But the really fun, amazing and most incredible thing was people coming back to us with their videos and their stories. And I have learned an enormous amount from that. I’m also just thrilled that we now have all these advocates who are shouting out, and I can tell you that your stories are way more powerful than anything I could ever say about DLD! They definitely get much more attention and more notice so that’s a really good thing.

                                    I do think again, just as a platform for bringing people from across the world together and to unite for DLD is just a really powerful and amazing thing. It’s surpassed all of our expectations, for sure. 

HOST:                         0:31:56 In terms of support for people with DLD, what is something that you would like to see change? 

COURTENAY:            0:32:05 There’s a lot that needs to change. We are on the beginning of quite a long journey, I think. But one of our immediate priorities is to get NICE guidelines. We have an NHS plan for autism, we have NICE guidelines for autism, we have NICE guidelines for other developmental conditions like intellectual disability, ADHD. These provide a really good framework for how we assess, diagnose, treat, and support young people who have these conditions that have a major impact on their lives. We need something like that for DLD. 

At the moment, it’s a bit of a postcode lottery. It depends on whether you’ve got amazing parents who are able and willing to advocate and fight like crazy. Most parents say it’s a constant battle to get the support that they want to need for their children. We really think if there was some NICE guidelines that showcased the best in evidence informed practice and gave that structure, we would have much more equitable access to services, and this would be a really good starting point for getting people like Johan and Sophie the kind of support that they need, so that they can participate fully in society. 

HOST:                         0:33:21 Sophie and Johan, any final thoughts that you have, what message would you like to get out there? 

SOPHIE:                     0:33:30 I really, really, really, really want DLD to be a known condition. It’s just a big thing in my life that I just want people to know about it. And I think I said it nearly ten years ago, or maybe less. I said, in ten years’ time, I want to say to someone, I have DLD, and then them to say, I totally know what that is. And that’s what I’m still wishing from this day on that happens. And that’s my… that’s the way I think about it. 

Ioan:                       0:34:03 I just think everything that’s being done to bring awareness for DLD is incredible, and is something that is really, really important, because I think the work that we do here is going to help build a community and environment that is not only limited but is… yeah, basically worldwide, that will bring light to DLD to a more general public knowledge. And I think with everything that’s been done so far, and everything that’s yet to come, I think, is going to be exciting. And I’m more than confident in saying that I know the day is going to come where people will… as Sophie says, you can easily say DLD, that you have it, and there’ll be that acceptance or at least that understanding. However, I’m very impatient, so I hope this day comes sooner! Those are my thoughts. 

SOPHIE:                     0:35:03 I do think we have come a long way since we started RADLD, there’s no doubt there’s a long way to go. I think I would leave with that message that early intervention is important, definitely. But to provide support throughout the lifespan will enable people to live fuller, richer lives, where they can participate more fully in society. Ultimately, that’s the goal of all of our efforts. So, I wouldn’t want that support to end when children get to be six or seven. And we can see with the support that that Johan and Sophie [inaudible 0:35:37] amazing people they’ve turned out to be, so every child should have that opportunity, I think. 

HOST:                         0:35:45 Thanks very much to Courtenay, Johan, and Sophie for making time to talk to us today. Please do see the links in the show notes and resources, and the videos that Sophie and Johan have made. 

Until next time, keep well. 

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