PhD candidate advocates for those with hidden disorder

Parker, 15, is the face of Developmental Language Disorder.

Griffith University PhD candidate Shaun Ziegenfusz is working to raise awareness for a common condition you have probably never heard of.

Developmental Language Disorder (DLD) affects 7.6 per cent of the population, which is about two children in every classroom, and impacts a person’s ability to speak and understand for no known reason.

People with DLD may have reduced vocabulary in comparison to others of the same age, leave words out, say them in the wrong order, or confuse tenses.

October 16 is DLD Awareness Day, with this year’s campaign message, “DLD — See me” aiming to make DLD visible to the world.

PhD Candidate Shaun Ziegenfusz.

Shaun, who has a background in speech pathology and founded social enterprise The DLD Project, said there is plenty that can be done for people with DLD, but admitted it is difficult to treat when people do not know the disorder exists in the first place.

“It’s definitely hard to put the right support in place if families and children don’t even know what they have,” Shaun said.

“When I work with adolescents with DLD, they often tell me others call them “dumb” or “stupid”, despite research showing their IQ is normal.

“It’s their language that is impacted.”

DLD is considered a “hidden” condition as there are no soft tissue markers, but the impact it has on a person’s life can be devastating if it goes undiagnosed.

“DLD is lifelong and puts people at greater risk of unemployment, academic failure, mental health issues and there is even an increased risk of sexual assault,” Shaun said.

“Approximately 50-60 percent of incarcerated youth have previously undiagnosed DLD.”

Shaun also graduated from a Master of Special Education at Griffith and said greater awareness of DLD and of typical speech and language development are key to better outcomes for these people.

After diagnosis, Shaun said The DLD Project helped to break down complicated research into information that was easy to understand.

“The DLD Project is focused on knowledge translation to help make research-based information accessible for consumers,” he said.

“It could be showing them how to adjust language, reading with their child or supporting their understanding.”

Parker’s story

Parker is a 15-year-old who loves photography and has almost 4000 followers on Instagram.

He also has DLD.

Parker loves photography and has DLD.

DLD often overlaps with dyslexia, which was the case for Parker.

Parker was originally diagnosed with dyslexia in Year 3 after having difficulties with NAPLAN.

He then started working with a dyslexia specialist but continued to have difficulties at school that were not totally explained by dyslexia and received a diagnosis of DLD in early 2020.

“Having a label has been life changing for Parker,” Shaun said.

“It explains why he finds it difficult to understand when a teacher gives him an instruction and why he finds it hard to concentrate, with his mind often going blank.”

“Knowing you have DLD means you don’t beat yourself up over it — it’s not that you’re not listening or paying attention,” Parker said.

“DLD feels like everything is going over my head all the time and when I talk, it feels like I’m about to stutter.

“It would be easier if more people knew about DLD.”

Shaun is conducting research on DLD as part of his PhD at Griffith Health, investigating the needs and necessary supports for students with DLD from the perspective of key stakeholders.