Developmental Language Disorder: Talking about the 'hidden' speech disorder that affects 7.5 per cent of children - and how to get help
Developmental Language Disorder, or DLD, affects the way children understand and use spoken language and can have a negative impact on future education and employment. Speech therapists reckon that around 7.5 per cent of children have the 'hidden disability' but that it often goes undetected. Mairead Holland talks to Kirsty Beggs, whose son Robert is thriving through being supported with the condition, and to speech therapist Ruth Sedgewick about the urgent need for more speech and language therapists
IMAGINE the excitement of your first child starting to talk, copying words and then, for no apparent reason, losing those language skills and retreating into silence.
This is what happened to Glengormley woman Kirsty Beggs's son Robert; eventually he was diagnosed with a condition which is estimated to affect about 7.5 per cent of children yet has such a wide range of symptoms that it often goes undetected.
Developmental Language Disorder (DLD), formerly known as Specific Language Impairment (SLI), affects the way children understand and use spoken language and, if not addressed, can have a negative impact on education and employment, as well as resulting in social and emotional problems.
Although DLD is a long-term condition which persists into adulthood, the key is finding ways to manage it and developing coping strategies to live with it.
The Royal College of Speech and Language Therapists (RCSLT), the professional body to which all speech therapists in Northern Ireland belong, believes it is vital to raise awareness of the condition among teachers, parents and even GPs.
Now aged 11, Robert is a pupil at Thornfield House School in Newtownabbey which offers specialist provision for pupils with a range of speech, language and communication needs.
Recalling the early days when her son's problems first became apparent, Kirsty says: "It's as if the words had just left his brain. He didn't really speak, he would have pointed at things and made signs.
"The first person I approached was my health visitor and she organised speech therapy for him.
"As he got older, the words did start to come but the pronunciation didn't come with them. 'Cup' was 'up'. He was talking but it wasn't very clear and he would have got upset and frustrated when he couldn't make himself understood."
This is when the specialist help of Thornfield was enlisted, with the school initially providing outreach support.
However, as Robert's difficulties with speech and reading continued, he was eventually diagnosed with DLD and became a full-time pupil at the school from Primary 2 onwards.
"He thrived and I started to see a big difference in him as his confidence grew," adds Kirsty, who has three younger children.
A factor in Robert's progress was the use of Paget Gorman Signed Speech - a system first developed by Sir Richard Paget in the 1930s - which his mum was also taught how to use.
Explains Kirsty: "When there's a word Robert doesn't understand he uses the hand sign which helps him remember how to pronounce the sound. I know what he wants to say and can help him as well.
"At the first class I thought, 'How I am ever going to learn this?' but I learned it from Robert.
"When your child is suffering you will do anything to help them. He was this wee six-year-old in a world where a lot of his friends didn't have these problems.
"He's amazing now, a changed boy, very sociable. A few of his words are still unintelligible and if you don't know him that well, you mightn't catch what he says.
"He used to take it all to heart. He's just learning now that it's okay to be different."
Kirsty's second son Zach (8) is also a pupil at the school and has been since Primary 3, although his language problems are different and less severe than his brother's.
Unlike Robert, he was a "wee talker" when he was younger and his language was clear.
However, when it came to reading he had problems recognising words and being able to express himself and was struggling with literacy homework.
His problems were compounded when he fell from a trampoline and fractured his skull when he was five. Apart from the physical damage, he suffered emotional trauma which required specialist help but, like his brother, is now thriving.
"When Robert was first having problems, a lot of my elderly relatives would have said, 'Don't worry, he'll grow out of it' or 'When he gets to school he'll be fine', but when it doesn't get any better, you need help then and it's about knowing where to go," reflects Kirsty.
For her and her sons, the past nine years have been a journey, which isn't over yet.
"I am still learning how to help them communicate," she adds.
Ruth Sedgewick, head of the NI office of the Royal College of Speech and Language Therapists, says DLD is often described as a hidden disability as it is more commonly not accompanied by speech sound difficulties.
However, while there may be no obvious 'flags' there are tell-tale signs that parents and teachers should be aware of.
"The typical things you see in a classroom that would indicate DLD would be a child having difficulty paying attention, following instructions or retaining information," she says.
"Other issues would be problems in using the right word or naming really familiar things, using longer sentences, retelling a story in the right order or describing something that happened.
"There may also be issues with developing literacy skills, using correct grammar, understanding sarcasm or idioms and actually making friends.
"This can impact on their behaviour and social development as well as in learning and keeping up in the classroom."
Other indications include a child who is late to babble, who is saying single words but has difficulty putting the words together or children who find it very hard to understand what is being said to them or making themselves understood to others.
She adds: "We know that good communication leads to positive long-term wellbeing and mental health. If you have difficulties expressing your thoughts or feelings, or understanding them, it really can impact negatively on your mental health."
DLD affects about two children in every classroom, with most diagnoses not being made until the age of five or above.
Ruth says that although the causes of DLD are not known, some risk factors include a family history, being male and being the youngest in a large family. It can also co-occur alongside dyslexia.
However, she stresses there are children diagnosed with it who don't fall into any risk category.
Neither is it caused by a limited exposure to language.
"The risk factors may increase the chance but these are often out of our control and not the reason why a person has DLD, so there is no need to attach guilt to a diagnosis," she explains.
"Once DLD has been identified and strategies put into place for a child we hope their life in the classroom and at home becomes much easier.
"You want them as they grow to accept this is part of them and they will have their strategies for going through life and coping with it."
Meanwhile, with just over 770 speech and language therapists in Northern Ireland, Ruth believes more are needed to deliver the wide range of services required.
"There are over 30 clinical areas that we reach into - it's not just about helping people with a stammer," she explains.
"A lot of our work with adults is taken up with eating, drinking and swallowing, which affects people who have had a stroke or dementia, as well as patients with neck cancer, multiple sclerosis, Parkinson's or who are receiving palliative care.
"We are only training 28 this year at Ulster University and we need more places. There are so many more things we could be doing and need to be doing but we can't without the workforce behind us."
Anyone who is concerned their child may have developmental language disorder, is advised to contact their GP, health visitor or community speech and language team.