Giving a voice to kids with Down syndrome

Researchers from the University of Alberta are helping children with Down syndrome who stutter find their voice and speak with ease.

Stuttering is a common problem that affects almost half of all children with Down syndrome, yet despite the scope of the problem, little research exists about preferred treatment options—or even whether to treat at all. Researchers with the U of A's Institute for Stuttering Treatment and Research (ISTAR) point to a new case study that shows fluency shaping can indeed improve a child's speech.

"People who stutter, whether they have a developmental delay or not, can do very well with treatment," said study co-author Jessica Harasym, a speech-language pathologist and Elks clinician with ISTAR in the Faculty of Rehabilitation Medicine. "There is no difference between the way the child in our case study responded compared with other children and families we've worked with who don't have Down syndrome."

Co-author Marilyn Langevin, ISTAR's director of research, said there is little consensus in the speech-language pathology community about treating stuttering for kids with co-existing disorders like Down syndrome. Their descriptive case study directly challenges the notion that children with Down syndrome should not be taught fluency skills for fear that failure could lead to frustration and damaged self-esteem.

"The difference in treating a child with Down syndrome might be using more simplified terms and slight modifications in how skills are explained, more modelling of skills—the more you show, the better," Langevin says.

In the study, Harasym and Langevin worked with an eight-year-old girl, "Sarah," whose stuttering had affected her scholastic performance and ability to speak with friends and teachers at school. Four months of treatment, including the practice of prolongation—speaking at an exaggeratedly slow rate—plus breathing techniques and voice management skills inside the clinic and at home, helped Sarah improve her fluency by 98.6 per cent.

"This is front-line clinical research and it is making a difference in people's lives," Langevin says, explaining that stuttering can lead to social isolation, teasing and bullying. She says treatment helped Sarah find a way to get her words out, and helped with school work as well as interacting and making new friends.

"When there is less interference with communication, a child like Sarah can function that much better. She's functioning better with friends, she's functioning better with family, and she's able to reach her potential in a more robust way."

Langevin and colleagues at ISTAR plan to publish studies that report on treating young adults with Down syndrome who stutter, as well as those with Prader–Willi syndrome and other co-existing disorders.
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The research was funded by an anonymous donor and a grant from the Alberta and National Elks and Royal Purple. It was published in the December 2012 issue of Journal of Fluency Disorders.