Stuttering Expert Upends Decades of Ineffective Treatment Guidance

“For many years, the field was talking about evidence-based practice, but it wasn’t walking the walk,” she said. Her research is based on rigorous analysis of historical data from such techniques and finds no evidence that they changed speech patterns. 

Stuttering is a neurological and genetic speech disorder that affects roughly 3 million Americans, and some 12 million have stuttered at some point in their lives. It often appears around age 2. Although stuttering is popularly seen as a disorder that causes people to repeat parts of words, most of those who stutter instead describe a feeling of being stuck: They know what they want to say, but something blocks them from speaking. 

For as many as 80% of children, stuttering disappears within two years. That can be a relief to parents and children alike, but this makes it hard to gauge the value of clinical interventions.

Various disorders, including stuttering, “come on unexpectedly in childhood, and they seem to go away unexpectedly in childhood,” Bernstein Ratner points out. “If you have a disorder that goes away quite frequently, it's going to look as though your treatments work really well.”

Overall, research shows that how well parents follow the advice they’ve been given has no impact on the speech of their children, she said. If a parent who follows the recommendations closely is no more likely to see their child’s speech change than a parent who ignores them, then the recommendations can’t be the reason for the changes. 

Using primary data from TalkBank, an international repository of original communications research, Bernstein Ratner and her colleagues transcribed and analyzed more than a hundred recordings of parents’ conversations with children who stutter. They paid particular attention to caregiver speech patterns, a dynamic that had been largely ignored in past research. 

In one of these studies, published last year in the American Journal of Speech-Language Pathology, she looked at speech rate and latency, intentional pauses in speech meant to model slow talking for children. She found no evidence that having parents slow down their speech or add pauses led to the desired outcomes for children.

In another study currently under review for publication in the Journal of Fluency Disorders, she looked at cases in which parents were advised to shorten and simplify their speech. As with other interventions, the data don’t show an impact.

All the well-intentioned but ineffectual advice creates an unnecessary burden for parents and children even if the stutter goes away. Those who don’t grow out of it can carry lasting shame, frustration and anger, incorrectly blaming themselves for the failure of these techniques. 

But if these widely recommended approaches don’t work, what’s a parent to do? 

Vivian Sisskin, a clinical educator and speech-language therapist at UMD’s Hearing and Speech Clinic, helps parents who come seeking an end to their children’s stutters to deepen their goals for therapy. 

“What will fluency bring your child?” she asks them. They typically say they want their kids to have friends, a good job, success in school and healthy self-esteem. Sisskin replies, “Okay, let's talk about how we do that in therapy, because that is stutter-affirming therapy.”

Adult clients here also shift from tracking how often they stutter or feel shame and focus instead on positive goals like speaking up for themselves or having meaningful connections from conversations.

Sisskin is working with other researchers to develop a first-of-its-kind tool for measuring such progress, focused on the experience and priorities of the speaker rather than the listener. “We're asking two questions,” she said. “How often do you do this? And we're also asking, how important is this to you?”

Now 43 and an assistant professor at the Peabody Institute of Johns Hopkins University in Baltimore, Timberlake still stutters but is discovering the life-changing benefits of hiding it less. She was in a group session run by the UMD clinic when she had her exhilarating breakthrough. In her words, stutter-affirming therapy is “transformative.”

She thinks many things would be easier if her stutter went away, but she also knows that’s not going to happen. Instead, she draws a parallel with her hard work to learn German, which she speaks well but imperfectly. 

“I’m completely at ease with having an accent,” she said. “I would love to feel the same way about stuttering — that it’s just a feature of my speech, not a thing I feel bad about.”