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One syllable at a time

Cite Magazine
Issue 28 - Summer 2016/17

It is the indiscriminate and awkward disorder that affects children, adults and even British monarchs. Curtin University researcher and clinician, Associate Professor Janet Beilby, is now tackling the mysterious condition of stuttering from a new angle – investigating it as a genetic condition – as she helps people all over the world find their voice, one syllable at a time.

We have all been lost for words at one point or another. For most us the prospect of public speaking or talking to an attractive member of the opposite sex is enough to make the words catch in our throat.

But for the one per cent of the world’s population who stutter, being unable to verbally express themselves is an all too familiar feeling and happens whenever they try to have a normal conversation with another person.

Stuttering is a problem in the ongoing rhythm of speech where the person knows exactly what they want to say but involuntarily loses control of their speech muscle patterns just as they are about to speak.

“It is called the silent disorder because by its very nature these people often feel impotent and 80 per cent of children who stutter are bullied significantly through their school years.”

It manifests itself in either repetitive speech or a dragging or cessation of speech but no matter how stuttering affects an individual they are perfectly eloquent if they are singing, whispering or talking in time to a beat.

“If they use their speech muscles in any other way than face-to-face emphatic conversation they are perfectly fluent,” Beilby says.

“So the mechanism is intact therefore it is something that triggers the source of control when they engage in adult conversation and we don’t truly understand it, yet.”

People who stutter start to do so between two and three years of age when children begin mastering adult speech development.

“That is the perfect age to nip it in the bud. Like any potential health issue, if we can stop the child practising it then we set them up successfully for life,” Beilby says.

Similar to other conditions like epilepsy and Sudden Infant Death Syndrome (SIDS) stuttering is more common in boys with the disorder affecting a ratio of four boys to every one girl.

However, if left untreated, or if treatment is unsuccessful, the individual will live with their stutter for the rest of their life and as they get older the disorder will become more deeply ingrained and therefore harder to treat.

Living with a stutter goes beyond the difficulty to speak in that it affects every aspect of the person’s waking life, Beilby says.

“School-aged children who stutter are sometimes educationally delayed because the child is less likely to put up their hand in class and say to the teacher ‘I didn’t understand that can you go over that again?’,” she says.

“It is called the silent disorder because by its very nature these people often feel impotent and 80 per cent of children who stutter are bullied significantly through their school years.”

As children reach adolescence they have difficulty engaging in social repartee, which forms the basis of adolescent social networking.

“These young people can’t do the joke telling and the quick witticisms with verbal repartee through which adolescents build familiarity “Beilby says.

“I am generalising because you certainly get very happy and well-adjusted adolescents who stutter but there are a large percentage who struggle with the psychosocial impact of the disorder.”

Historically, theories on what causes stuttering have centred on emotional or psychological origins or a result of the individual’s environment, such as their family life.

Their ultimate aim is to identify which genes are responsible for stuttering so that they may screen for and identify the risk of this disorder in children enabling early treatment and prevention before it takes hold.

Much of these theories were based on misconceptions and misinformation about stuttering, Beilby says.

They are among the first researchers in the world to investigate stuttering via genetics instead of considering it from an environmental or behavioural angle.

Some of misunderstanding about stuttering was depicted in the 2010 film The King’s Speech where King George VI was treated by Western Australian speech therapist Lionel Logue to overcome a severe stutter. In the film, King George admitted to being made to write with his left hand instead of his right which Logue said was common for stutterers.

Beilby says attributing things like changing handedness and tickling a baby’s feet as causing stuttering were major misconceptions.

“These are all instances of it being emotionally-based and fortunately we have debunked those now,” she says.

“We still don’t know what causes stuttering, but we know what doesn’t cause it and I think it is a complex interplay between a multitude of factors.”

To uncover new information on stuttering, which recent studies suggest may affect as much as 11 per cent of Australia’s population, Beilby is embarking on a large-scale research project.

The research will be based at the Curtin University Stuttering Treatment Clinic to examine the person’s genetic makeup and identify the genes responsible for stuttering.

Beilby and her collaborator Dr ShellyJo Kraft from Wayne State University recently received US$300,000 (AUD$391,000) from America’s National Institute of Health to conduct the study by taking saliva samples from 4,000 participants at the Curtin clinic.

They are among the first researchers in the world to investigate stuttering via genetics instead of considering it from an environmental or behavioural angle.

The researchers will recruit participants and collect DNA over the next six months and while Beilby says they will accept anybody who stutters they are keen to collect samples from multiple generations of people who stutter in the same family.

Within the family cohorts already, they have 15 members of the same family across four generations who stutter while Bonnie (pictured) will also contribute to the study along with two of her first cousins who also stutter.

“What we are doing now is hunting for the genes for stuttering. We haven’t found them yet and I suspect there will be multiple genes,” Beilby says.

“But the hunt is proving very interesting because along the way it is uncovering a lot of very unique findings, one of which is a strong penetrance in Western Australian families.”

The study follows on from a 2014 project called the 1,000 Family Study, where Beilby found the current young generation of stutterers were far more likely to suffer from the disorder compared to their older family members who also stuttered.

“We haven’t found this anywhere else in the world,” she says. “In England or Europe you may find only a handful of people through a few generations of the same family who stutter but in WA we are finding an increased penetrance with a whole generation of people with these particular symptoms.”

Their ultimate aim is to identify which genes are responsible for stuttering so that they may screen for and identify the risk of this disorder in children enabling early treatment and prevention before it takes hold.

Currently, Beilby and her colleagues at the Curtin Stuttering Treatment Clinic treat children who stutter by approaching it with natural parenting practices and empowering parents to manage this behaviour in their child’s development like they would any other.

They do this by directing their young child and asking them to avoid speaking in a certain way.

“We treat it in a very simple, positive parenting way but unfortunately, those principles get less effective the longer it has been in the child’s system,” she says.

So, as individuals reach adolescence or adulthood, the clinicians need to implement increasingly robust techniques to manage this complex disorder.

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