After her son was diagnosed with Developmental Language Disorder (DLD), Genna White became a Speech and Language Therapist to help families like her own. In this blog, Genna reflects on what DLD is and what she’d like parents, healthcare workers, and others working with children to know.
In 2012, at the age of 3, my eldest son was diagnosed with Developmental Language Disorder (DLD). Then, it was known as Specific Language Impairment (SLI). At the time, I had no experience of language disorders and no idea how I was going to help him.
The subsequent nine years have been a steep learning curve. I have spent them being my son’s researcher, therapist, educator and advocate, as well as his mum. I have also learned how to navigate bureaucratic systems and to fight for the help he needs. It has been a lonely, tiring and frustrating journey filled with worry.
Our journey has been life-changing in many positive ways too. My son has accomplished so much despite the obstacles he faces. Together we have built a support network of people who understand our challenges and appreciate our achievements. I have trained to be a speech and language therapist and hope to help families like my own.
DLD is still relatively unknown though, so I’m also keen to raise awareness through this blog.
So what is Developmental Language Disorder (DLD)?
DLD is a diagnostic term used when individuals have difficulty understanding and/or producing language. These difficulties are likely to persist beyond the age of five and are not associated with a known medical condition.
A diagnosis of DLD can be given when other neurodevelopmental disorders affecting speech, attention and motor skills are present and if there is a mismatch between verbal and non-verbal ability (Royal College of Speech and Language Therapists [RCSLT], 2020).
The term DLD was adopted following the CATALISE project (Bishop et al., 2016; Bishop et al., 2017) which aimed to achieve consensus regarding the criteria and terminology of children’s language disorders. Previously, a range of diagnoses were used to refer to language difficulties, including specific language impairment (SLI).
For every 100 children aged 4-5 years in mainstream schools in the UK, it is estimated that around 7 or 8 have DLD. This is equivalent to two children in every class.
DLD is a diverse condition with far-reaching effects; it not only impacts communication but also social, emotional and educational development.
What research is available about DLD?
DLD is around 7 times more common than autism spectrum disorder (ASD) (with DLD affecting 7 or 8 children in every 100, and autism affecting around 1 child in every 100).
Yet in a 2010 paper, Bishop documented that DLD received less research attention than merited given its prevalence and severity of impact. In a follow-up 2020 study, McGregor reported that research on ASD had tripled in the subsequent decade, whereas research concerning DLD had changed relatively little.
What we do know about children and young people with persistent language difficulties is that they face a range of communication, education and social challenges across their lifespan, including:
- a higher risk of academic under-attainment and school exclusion
- poorer quality friendships and higher risk of bullying
- problem and externalising behaviour
- emotional difficulties
- poorer health outcomes, higher rates of unemployment and lower relationship status
- higher risk of psychiatric disorders
In 2019, the RCSLT published their top ten research priorities for DLD. These include outcomes for individuals with DLD, evidence-based interventions to facilitate the goals of individuals with DLD, and effective ways of teaching self-help strategies to children and young people with DLD.
What would you like parents of children with DLD to know?
It’s not your fault
Even after all this time, there’s still part of me that feels responsible for my son’s difficulties. I know it isn’t true, but mum guilt is real!
You’re not alone
I’ve found connecting with other people with similar experiences to be invaluable. There’s comfort and power in sharing knowledge and experience and knowing there are people who really understand how hard it can be raising a child with additional needs.
There can be lots of barriers to getting the right help and support for your child but if you think your child needs it, don’t stop until they get it.
Spread the word
Tell people about DLD. It’s the only way we’re going to raise awareness and help make things better for our children.
What would you like health professionals, and others working with children, to know about DLD?
Most importantly, I would like people to have heard of DLD and know what it is.
It’s very easy to take language for granted but it is fundamental to so many different aspects of our lives. Language difficulties don’t happen in isolation either. An individual with DLD will experience challenges in a variety of health contexts, be it completing a form to register at a GP surgery, taking part in a sight test, following medication instructions or even just explaining how they’re feeling. Viewing individuals holistically and adopting an inter-disciplinary approach is one step toward improving accessibility and support for people with DLD.
I also think it’s important for people working in research and funding provision to consider why DLD is so under-researched and underfunded compared to other conditions and to take the necessary steps to redress this.
Chances are we all know someone with DLD so we should be thinking about the challenges they face and how we can help.
Links to support organisations and further resources
- Afasic: voice for life https://www.afasic.org.uk
- Engage with Developmental Language Disorder (E-DLD) https://www.engage-dld.com
- I CAN, the children’s communication charity https://ican.org.uk
- Raising Awareness of Developmental Language Disorder (RADLD) https://radld.org/
You may also be interested in reading:
- Living with a long-term condition: five perspectives – part 1. In the first part of a two-part blog, Brian, Ceri, Genna, Olivia and Emma reflect on the daily burden of work that comes with living with a long-term condition, how they’ve managed during the pandemic, and sources of information and support they find useful.
- Living with a long-term condition: five perspectives – part 2. In part two, Brian, Ceri, Genna, Olivia and Emma reflect on making treatment decisions, what they want healthcare professionals to know, and what they would tell their younger selves.
Join in the conversation on Twitter with @whitegenna and @CochraneUK or leave a comment on the blog.
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Genna White has nothing to disclose.