DLD: The most common childhood disorder you’ve probably never heard of?

Irish study aims to improve diagnosis of developmental language disorder using an app

Julie Sweeney pictured with her son, Connor, who has been diagnosed with DLD. Photograph: Daragh Mac Sweeney/Provision

It has been described as “the most common childhood disorder you’ve probably never heard of”. Yet, with an estimated two children in every classroom of 30 affected, the chances are you, or your child, know somebody with it.

Developmental language disorder (DLD) is a condition in which there are unexplained and persistent difficulties acquiring language, including vocabulary, sentence structure and conversation. It hinders understanding as well as expression and is as common as dyslexia, yet far less recognised.

Dr Pauline Frizelle

"It affects children academically, but also more broadly in terms of social competence, their wellbeing and their ability to make friends," says Dr Pauline Frizelle of University College Cork (UCC). With language at the basis of everything we do, DLD has wide-reaching impacts on, for example, children's ability to do maths, to follow instructions at PE, to follow the rules of games in a school yard.

“A person might just think ‘that child is not very good in school’, rather than that they have an inherent difficulty in processing language to understand what people say, or to express themselves.” But, “without recognising DLD as a disorder, children won’t get the supports that they need”.


Are there signs parents can look out for?

Not until after the age of two, advises Frizelle, as before that a vocabulary ranging anywhere between 50 and 500 words is all normal. At age two and older, it’s quite common for children to be slow to use expressive language. “You can have a child at two or 2½ who doesn’t say a whole pile, but they understand. If they don’t understand then alarm bells begin to go off.”

There are children who are considered late talkers at age two, but they could be fine by age four. Equally, there are children who seem absolutely fine at age two who are not fine at age four, she says.

Part of the problem around awareness of DLD has been the lack of consensus around what to call it. Formerly known as specific speech and language disorder (SSLD), amongst other things, an international group got together in 2016 and agreed on DLD. Since then, there has been a global effort to raise awareness through initiatives such as a dedicated campaign website (radld.org) and the designation of an annual international developmental language disorder awareness day on October 15th.

I think the reason teachers haven't heard of it is because the terminology hasn't been officially adopted by the Department [of Education

Parents of children diagnosed with DLD are frustrated that the National Council for Special Education (NCSE) continues to refer to it as SSLD and they believe this has the potential to confuse people. "I think the reason teachers haven't heard of it is because the terminology hasn't been officially adopted by the Department [of Education]," says Julie Sweeney, whose son Connor has DLD. It's hard for a parent to go into a teacher and say their child has been diagnosed with DLD because if they then look up the department's NCSE website they won't find it mentioned.

“It’s frustrating and makes a difficult road harder. You’re trying to battle a lack of knowledge.” If the department isn’t recognising the term DLD, teachers can wonder where parents are coming from.

There are no visual clues to the condition and it is diagnosed by speech and language therapists through a combination of factors, says Frizelle, a lecturer in UCC’s department of speech and hearing sciences. Firstly, the child being assessed would be low on objective measures of speech and language, and the patterns of language they use and how they communicate in different contexts also need to be looked at. “There must also be evidence that the language difficulties persist and there is a functional impact on the child.”

Frizelle is involved in the development of an app to help improve the diagnosis of DLD. “It’s a different way of testing from the standardised tests that are currently available to test comprehension.”

She started working on the TECS-E app while on a scholarship at Oxford University, in 2016, and now is at the stage where she needs the help of hundreds of children in Ireland who do not have any diagnosed speech and language difficulty (see panel).

“There are so few tests normed on an Irish population. This is quite problematic because we end up relying on tests where what is typical is based on a population in the US.”

Children quickly learn strategies to hide the fact that they have difficulties understanding language, such as copying what their peers are doing

After gathering data from the participation of typically developing children, Frizelle and her team will then use the app with children who have been diagnosed with, or are at risk of, DLD, and they will be able to establish how well it confirms a child’s diagnosis.

“We want to diagnose it early but it is very hard to diagnose it definitively under four. So we look at potential risk factors to identify children who are more likely to need additional supports.” Risk factors include hereditary links and social disadvantage.

Problems in understanding language are harder to identify than those of expression. Children quickly learn strategies to hide the fact that they have difficulties understanding language, such as copying what their peers are doing, so it is difficult for a primary teacher of a class of 30 to spot the issue.

There are tests for assessing a child’s understanding, but problems with these motivated Frizelle to develop a new approach. “Nowhere in the English-speaking world is there a comprehensive assessment that looks at children’s understanding of complex sentences. Typically children start to understand those sentences around the age of three. For example, ‘before you hang up your bag, put the pencil case on the table’,” Frizelle explains.

“If assessed on simple sentences, they can appear to be okay, but in reality they are struggling. Often there is a mismatch between what’s being tested in the standardised test and what children are actually hearing in the classroom.”

Existing tests use still images which can’t, she says, assess the use of more complex sentences. This app uses animations, which are also much more engaging and fun for children. She aims to have TECS-E established as an assessment tool for DLD by 2023.

As it is automated, including how it is scored, people don’t need to be highly experienced in tech administration to use it. So it is envisaged that, with parental permission, it could be used in pre-school settings, with the results forwarded to speech and language therapists, who could interpret the data and identify children who need extra support.

Julie Sweeney: ‘The way the HSE is resourced, if you don’t chase... and you don’t push, you can go to the back of a very long queue’

Julie Sweeney pictured with her son, Connor. Photograph: Daragh Mac Sweeney/Provision

Julie Sweeney knew when her son Connor was aged 18 months that he had speech issues, but she also knew that the reaction of everybody else would be “give him time, he’s not yet two”.

So she waited until his second birthday before bringing him the GP. Even then she was being told it was early days, “but I knew”, she says. “He wasn’t babbling, he wasn’t making any typical progression with his speech. He didn’t say ‘dada’, a bit of ‘mama’, that was about it.”

She was insistent with the GP that she wanted a referral right away because, “I loosely knew there were savage waiting lists.”

After about six months, they got Connor into speech and language therapy in primary care. “I was probably taken a bit more seriously because I could indicate there was family history, and also I wasn’t being fobbed off as a first-time mum.” She had two older children with whom to compare.

Connor started blocks of speech and language therapy through the HSE, but the sessions were spaced out “so a six-week block would have taken 14 or 15 weeks”, she says. While the therapists were excellent, Julie believes this system of sporadic sessions, “an hour with somebody he didn’t know”, wasn’t massively beneficial.

Between ages three and four, Connor was accepted for early intervention services. These included group sessions during which, for the first time, he could see children in the same situation. “He really enjoyed going to those group sessions. I think it is important for their self-esteem to realise they are not on their own.”

It wasn’t until the age of four and a half that “DLD” was used on any report on Connor, who also has verbal dyspraxia. “Not only is he battling the language element, but also the speech element of how to form words is quite hard for Connor,” she explains. He has to explicitly learn to say a word, which is a motor planning issue and is rarer than DLD.

Connor was allocated a place in a language class in north Cork, which was “absolutely hands down the right setting” for him, says Julie. However, it was hard telling him he wasn’t going to be starting in the national school a few hundred metres away from their home outside Mallow, which his siblings had attended and where many of his friends were going, but instead would be in a school 15km away where he knew nobody. “It was difficult but at the same time it was the right thing to do for him.”

He's back with his old pre-school friends and absolutely loving it

There was a class of seven with one mainstream teacher and a speech and language therapist assigned. He was getting both individual and group therapy, with more work to do at home. Connor did two years there, the maximum allowed, and now, aged seven, he has been in the local mainstream school since September. “He’s back with his old pre-school friends and absolutely loving it.”

But it’s too early to know how he is going to cope. “School is very, very tiring for him as he works harder than everybody else just to keep up. I think that’s quite common with DLD.”

She has been “emailing and fighting and chasing resources” to make sure Connor doesn’t fall into any cracks between leaving language class and starting in mainstream. She didn’t want him to go from having three sessions of speech and language therapy a week to getting nothing and he has transferred into the HSE’s progressing disability services, with which he will get a block of therapy this autumn.

Julie regards herself an “accidental” advocate. But “unfortunately the way the HSE is resourced, I think if you don’t chase and you don’t follow up and you don’t ask and you don’t push, you can go to the back of a very, very long queue quite quickly”.

Connor is very sociable and she and her husband Jonathan reckon they’re lucky with his personality. “He is quite happy in himself and for now, I think, can keep up.”

But language requirements for socialisation increase as children get older and she worries he might fall behind. Speech and language therapy can enable huge improvements in children with DLD but it is a lifelong condition, she stresses.

“That is why I would fight so hard for interventions now. It takes a ferocious amount of time and effort as a family to be constantly chasing up all these appointments but I would see the benefits long term. If we can get the interventions now, maybe he will be able to keep up with conversations when he’s older.”

Brenda Mockler: ‘You have to be aware... and try to speak as plain and straightforward as possible’

September marked the big transition to secondary school for Robert Mockler (13) of City West in Dublin, who was diagnosed with DLD at the age of six – or specific speech and language impairment as it was called then.

“When Robert was about 2½ he wasn’t reaching all of his milestones in terms of language and he also made strange quite drastically,” says his mother, Brenda. “He would scream at people if they came too close to him; he was afraid. There were emotional issues and he babbled a lot. He was having conversations with us but it wasn’t language.”

Having received early intervention services for ages three to six, due to “global delay”, he progressed so well, he wasn’t deemed to be in need of school-age services. He has been attending a six-week block of speech therapy through the HSE once a year.

She recalls reading an observation by Aoife Gallagher of the University of Limerick that people with DLD "can't read between the lines".

“That was like a lightbulb moment for me – that’s Robert all over. He’d be lost but you might not know he’s lost.”

Idioms are very tricky, as children with DLD take them literally. She laughingly recalls the time that she mentioned how dad was great that he did the school run and Robert was looking at her strangely, saying “Dad does not run to school”.

“You have to be aware of that and try to speak as plain and straightforward as possible.”

They had Robert assessed privately during sixth class and, while some things had improved, his diagnosis of DLD was confirmed. A few weeks into secondary school, all is going okay, says Brenda, who believes it suits him that the school uses iPads. When she had asked him his preference for an iPad versus books, “He said ‘well Mam if I don’t understand a word when I am reading a book, I can’t zoom in on it, but I can on the iPad. I can zoom in on that word, really look at it and concentrate’.”

Through involvement in last year’s DLD awareness day, Brenda says she and Robert learned so much more about the condition. “The self-awareness it brought for him was amazing. It was great for him to talk about it.”

She hopes sharing of experiences might prompt other parents or teachers who know a child with similar issues to seek professional help.

How your child can help with research to benefit others

Children aged five to nine with no speech and language issues are needed to help in the development of an app to diagnose those with DLD.

"We have developed a set of fun and engaging animated films, which children watch and respond to, and which allow us to uncover the specific areas of language the child is finding difficult," says Dr Pauline Frizelle, who is leading the project, funded by the Health Research Board. To make the TECS-E (test of complex sentences) app ready to be used by speech and language therapists or teachers, they need to find out how children with no difficulties respond at different ages online. Participation by up to 1,000 children is needed to establish what is typical.

TECS-E can be downloaded free, only on an iPad, from the app store, and should take your child about 20 minutes to complete. It is really important that children do it without help from an adult, says Frizelle. They will also be seeking children aged three to four to do it, but that will be done with in-person support.