Estimates suggest that around 7% of all young people over the age of 5 meet criteria for a diagnosis of Developmental Language Disorder or DLD – a persistent language difficulty that cannot obviously be explained. Yet, many of these children will never receive a diagnosis or see a speech and language therapist which is leading to long-term negative impacts for individuals, their families and for wider society.

These are some of the stark warnings from researchers behind a new project launching today that coincides with International Developmental Language Disorder Awareness Day. Led by psychologists at the University of Bath with colleagues at City, University of London and the University of Cambridge, the team wants to engage parents and carers of children with DLD, as well as those unsure about diagnosis.

Their aim is to help parents feel more informed about latest developments in the area by making academic research more relevant and applicable, but they also want fresh ideas and input from families about the challenges they face which could inspire future studies.

DLD is typically understood as a condition where children have problems understanding and/or using spoken language. There are no obvious reason for these difficulties, for example, there are no hearing problems or other neurodevelopmental disorders that explains them, yet they are common: estimates suggest that around 7% of all young people over the age of 5 meet criteria for a diagnosis of DLD.

The new website ‘Engage with DLD’ will support families with links to resources to help parents worried about their child’s language development, including signposting to get support from speech and language therapists in local areas around the country. As well as making research more accessible, a key aim is to provide a platform for families to get actively involved in new and ongoing research from a wide variety of research groups across the UK and beyond.

Project lead, Dr Michelle St Clair from the Department of Psychology at the University of Bath explained: “DLD is a very real problem for a number of young people and their families but all too often we see the diagnoses are missed and the ramifications of this on individual’s lives can be profound.

“One of the issues is around awareness of the condition within schools and other education settings. Another is the fact that it is very difficult to conduct research on these families and therefore it’s hard to breakdown some of the barriers which persist for them in getting help.

“By launching this project today, we really want parents and carers from right around the UK and beyond to get involved by sharing their experiences and feeding in ideas that can shape future research and, we hope, make a difference to the lives of many.”

Professor Nicola Botting at City, University of London added: “Families have told us for many years that they struggle to access the research about DLD, even when the papers are open access. It will be great to create some really accessible resources that are quick and easy to read, and which emphasise the key messages. This will help parents to understand DLD better, but also to discuss the challenges with professionals in an informed way and build cases for support via EHCPs* and other routes.”

*EHCPs refer to Education, Health and Care Plans.

Dr Jenny Gibson at the University of Cambridge said: “Our long-term hope is that better research collaborations, including partnerships with those affected by DLD and between research centres across the UK and beyond, will lead to improved access to diagnosis and subsequent support for children with DLD.

“At present the condition is so under-recognised that many studies tend to be small, making it difficult to draw definitive conclusions about the best treatments and support. Our goal is to build momentum in this research area so that we can make a significant difference to the lives of everyone affected by DLD.”