Everyone has “tripped” over their own words before. But while stuttering obviously exists, what is it, really? Well, developmental stuttering is stuttering as the average person knows it: a disorder that affects the smooth flow of speech production.
Stuttering affects 1 percent of the world’s population, or about 70 million people. Five percent of children stutter for six months or more. While there are risk factors, there’s no concrete marker yet to indicate future habits. And treatments in adulthood can be inefficient, allowing plenty of opportunity for relapse.
“It’s a very interesting disorder,” said Soo-Eun Chang, Ph.D., CCC-SLP. “It’s called a ‘medical mystery’ because it’s one of those conditions where people don’t know exactly what’s going on. The cause is not clear, yet most people know of people who stutter … we have very little information on what causes a child to continue to stutter versus others who are allowed to recover.”
Chang would know, as she is also the principal investigator and director of the Speech Neurophysiology Lab (The Lab), a nonprofit study conducting research on the neural bases of stuttering; The Lab is, in fact, one of the first longitudinal studies ever to truly tackle the difference in developmental trajectories between children who stutter and those who don’t.
Funded by the National Institute of Health (NIH), there are two sites for The Lab’s objectives: Michigan State University (MSU) as the MSU Developmental Stuttering Project and the University of Michigan in Ann Arbor. MSU collects data through activities such as recruiting preschool-aged children, collecting MRI tests and more; the Ann Arbor site then analyzes the data. Each site consists of both undergraduate and graduate students.
“It’s important to study these young children, because they’ve not been stuttering for a long time. If you study just adults who stutter, now you’re studying a brain that’s been reacting to the fact that you have stuttering or making compensations to the fact that you’ve been stuttering,” said Chang.
Saralyn Rubsam, CCC-SLP, is a speech-language pathologist and research coordinator at the MSU Developmental Stuttering Project. She works directly with families on the process of the study and finds ways to keep children rewarded for their patience during data collection.
“We make it a lot of fun for the participants … we also do assessments, as well as mock MRI training to get kids comfortable, to make it a positive experience,” said Rubsam. “They also get to watch a movie and, at the end of their time, take home a picture of their brain.” Parents also receive a copy of reports for all testing.
Lab Manager Chelsea Johnson helps to organize the daily activities behind scheduling and managing the time of The Lab, as well as mentoring employees and participants. A graduate of MSU, she enjoys all the opportunity this kind of local research of international importance has brought her, as well as the chance to make a real difference in the lives of others.
“My hope would be that the research we do here helps drive research-based therapies for kids that stutter in the future and better identify kids that are at-risk to persist into adulthood, so we can get them the early-prevention treatments that they need,” said Johnson.
Leading a lab is about jumping all in: one must wear many hats and pull off the style of each one. Some of Chang’s responsibilities include making sure everyone’s serving their function, representing the research and securing funding, which hasn’t been an issue so far — the NIH recently renewed The Lab’s research grant in 2016, ensuring five years of funding.
The NIH’s interest in continuing this significant work was a good message of encouragement, and it’s no wonder. Describing East Lansing as the “mecca” of stuttering research, Chang believes that The Lab is on the right track; it will only stay that way as the community gets more involved.
“We have a real opportunity to make contributions to this field and to make a difference for people who stutter in the future. If you participate in this study with your children, you have a real opportunity to make a difference and contribute to the science,” said Chang. “I don’t think a lot of people know that this is really a special study right in the middle of East Lansing.”
Because of the work at the MSU Developmental Stuttering Project, better treatment for millions of people who stutter grows closer to becoming a reality. To find more information about goals, publications and how a child may qualify to participate, please visit neurostutteringresearch.com.