(Ireland) Calls for DLD awareness; "most common childhood disorder"

Oct 14, 2021, Irish Times: DLD: The most common childhood disorder you’ve probably never heard of? https://www.irishtimes.com/life-and-style/health-family/parenting/dld-the-most-common-childhood-disorder-you-ve-probably-never-heard-of-1.4692628

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…. 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)…. 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…. 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 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.”… 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…. 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.”… 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.