How my lived experience of DLD shaped my work as an SLT

As part of developmental language disorder (DLD) Awareness Day, Lydia Knight, a paediatric SLT working in the NHS, reflects on growing up with DLD. She shares how her lived experience shaped her professional journey, and why she believes self-advocacy should be developed across the lifespan.

 

My journey with DLD

I was diagnosed at three years old with what was then described as “severe receptive language disorder”. As a young child, I struggled to understand spoken language, was late saying my first words, and attended a language resource unit between the ages of four to eight. Returning to mainstream education was challenging. I experienced bullying and isolation and eventually agreed with my mum and teachers to repeat a year. Looking back, this was pivotal.

The additional time helped me consolidate learning, build confidence and develop secure friendships.

Throughout secondary school, GCSEs, A-levels and university, I continued to need adjustments such as extra time and extended deadlines. As a teenager and young adult, I began speaking publicly about my experience and became involved in youth projects with Afasic, a DLD support charity. I later completed a Bachelor’s in English and History, a Master’s in Education and Inclusion: Special Educational Needs, and eventually a Master’s in Clinical Communication Studies.

Seven years ago, I became a practising paediatric SLT. I was also assessed by an educational psychologist and diagnosed with a specific learning difficulty. This helped me understand some of the cognitive differences that continued to affect me, including working memory and auditory processing.  For example, I can find it difficult to follow conversations in noisy environments, may need information repeated and sometimes need additional processing time to formulate my response.

 

From lived experience to clinical strength

My experience of DLD has become an important strength in my work as an SLT. As a child, I often relied on facial expressions, body language and environmental cues to help me understand what was happening around me. I believe this contributed to my ability to notice emotions, empathise with children and families, adapt my communication and think holistically about people’s needs. It also helps me connect lots of ideas together to problem solve in innovative ways through thinking laterally.

When appropriate, I share aspects of my own experience with children and families.  Sometimes hearing that someone else has faced similar challenges can help a child feel less alone. I also want them to give them hope and knowledge that their current communication challenges do not have to determine their future. Focusing on their strengths and passions can help them achieve and thrive with the right support.

My experience has taught me that DLD can look different across the lifespan. We may develop strategies and strengths that enable us to manage difficulties differently as we grow.

This is why “lifelong learning” has become an important motto for me we may take longer to learn some skills, but with the right support, understanding and encouragement, we can continue to develop.

 

Why self-advocacy matters

One of the biggest lessons from my own journey has been the importance of self-advocacy. As a child, adults often advocated for me and explained my strengths and needs with me openly, especially my mum. Over time, this support, as well as repeated positive experiences, helped me learn how to advocate for myself, such as asking people to repeat information, explaining what helps me to process information and requesting reasonable adjustments.

I see self-advocacy as something that develops gradually rather than a skill that suddenly appears in adolescence or adulthood.  Parents, carers, teachers and professions can begin laying these foundations from an early age. This might involve modelling phrases such as:

“I need some thinking time.”

“Can you say that again?”

“Show me what to do please”

“It is okay to ask for help.”

These everyday interactions can help children develop a positive sense of identity and understand that communicating their needs is a strength. Research also highlights the importance of self-advocacy for people with disabilities and neurodivergence, including potential benefits for employment, wellbeing and relationships (Fenn & Scior, 2019; Tilley et all, 2020).

 

Self-advocacy across the lifespan

Self-advocacy is a preventative measure as well as a pro-active way of helping children and young people’ needs be understood and met by others in their environment. However, it often takes years of coaching from key adults around the young person to build these self-advocacy skills over time.

Self-advocacy works better when the right support is in place, the adults around the young person responds positively, and there is space for the child/young person to practise self-advocacy in a safe environment.

For example, parents/carers and school staff in primary schools can play a key role such as by regularly modelling in conversation the child’s strengths and needs, and reading story books showing affirming self-talk around the child with speech, language, and communication needs (SLCN). This starts to build the child’s sense of self, which is all preparation work for self-advocacy skills.

As a result of my experiences, I can see how vital self-advocacy skills are to future success and wellbeing. This is why I am drafting a ‘Self-advocacy Across the Lifespan’ guidebook.  It is important that I co-design this with the DLD and other neurodiversity communities for this to become a reality, as well as experts in self-advocacy therapy, to make sure it is evidence-based, accessible, and gives bite-sized activities that are easy to deliver in everyday life. If you would like to get involved, please get in touch Lydia.knight@swyt.nhs.uk.

 

Read the RCSLT’s developmental language disorder (DLD) guidance