My Friends Who Stutter

…made me a better person

A booklet by Elizabeth Wislar & Hope Gerlach

My son and I just returned from the 26th annual convention of Friends, The National Association of Young People Who Stutter. We started going to the meetings about 10 years ago when he was in middle school. Friends began as a support and educational organization for children who stutter, their families, and the professionals who work with them. Although their focus has always been on youngsters, from the outset they’ve welcomed older children and adults who stutter into their supportive community. Over the years, Friends has expanded into a national organization that hosts an annual convention each July, and a number of regional one-day conferences that provide invaluable support and educational opportunities to those who stutter, newly minted speech/language therapists, and graduate students studying speech therapy.

The annual three-day conferences are always remarkably uplifting, often life-changing events for all of the attendees, including me and my son. It’s both joyful and empowering to be a part of the vibrant, supportive, and inclusive environment that Friends provides for this community.

I think that the most inspiring part of the conference is listening to the personal stories of the resilient, courageous young people who have grown (or are growing) to accept and ‘own’ their stutter, and who are thriving despite the fluency challenges that they face.

It’s difficult — if not impossible — for those of us who don’t stutter to appreciate how frightening, frustrating and exhausting it can be to struggle with tasks as simple as telling someone your name, let alone navigating adolescence, college, a job interview, or becoming an engineer at Google, a staff writer at the Atlantic, a successful attorney, or a college professor (as several of this year’s attendees have).

In rare instances, stuttering can be brought about by injury or stroke. However, the vast majority of cases develop spontaneously. About 5% of the general population report having stuttered at some time in their life, and about 8% of preschool-age children develop a stutter. Of the latter, approximately 80% will regain fluency naturally within several years of onset. However, the remaining 20% will be lifelong stutterers. That amounts to about 1% of the population at large, or over 3 million Americans and 75 million people worldwide. Those affected include a number of famous people whom you may not realize are stutterers: John Lee Hooker, Samuel L Jackson, James Earl Jones, Boris Karloff, Nicole Kidman, BB King, Marilyn Monroe, Elvis Presley, Jimmy Stewart, Herschel Walker, Tiger Woods, Winston Churchill, and, of course, President Joe Biden, among others.

Stuttering is a complex neurological phenomena the mechanisms of which are still not well understood despite the fact that it disrupts one of our most fundamental human characteristics: fluid communicative speech. Although speech comes to most of us easily and naturally, it is an extraordinarily complex process that requires the millisecond-by-millisecond coordination of hundreds of muscles in the head, tongue, neck, and torso all of which, together, allow us to modulate our speaking rate, articulation, pitch, rhythm, loudness, and prosody. This remarkable ability requires the spontaneous, fine-tuned coordination of broad, dynamic neural networks that spread over multiple (cortical and subcortical) areas of the brain. Those of us who are fluent remain completely unaware of this complexity while we speak. People who stutter, however, have a keen understanding of just how intricate speech production can be.

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Speech-language cortical areas and their interconnecting neural pathways. Multiple studies have reported differences in connectivity between speech/motor and auditory cortical areas in those who stutter versus those who do not. AF/SLF: arcuate fasciculus/superior longitudinal fasciculus; BA: Brodmann area; EFCS: extreme fiber capsule system; FOP: frontal operculum; UF: uncinate fasciculus. Figure reprinted and modified from The American Physiological Society. A.D. Friederici (2011) The Brain Basis of Language Processing: From Structure to Function. Physiological Reviews.

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There are as many types of stuttering as there are people who stutter. And, anyone’s unique stutter can change from word to word, sentence to sentence, hour to hour, and even over months and years. Interesting, too, is the fact that hormonal fluctuations (such as puberty or menstrual cycles) can affect stuttering, as can stress.

Fundamentally, stuttering is a product of anomalies in information processing within the neural systems that control and modulate speech production. We know from the times during which people who stutter have periods of fluency (for instance, when singing) that stuttering is not an inability to produce speech, per se. It’s an inability to produce fluent speech consistently.

The children, young adults and speech therapists who attend the Friends conferences know that stuttering can’t be “fixed,” or “cured” as was the common (but erroneous and often counterproductive) therapeutic approach some years ago. Currently, the goal of the most effective speech therapists is to help their patients come to accept, embrace, and become comfortable and effective communicators using their own unique ways of speaking. In fact, the theme of this year‘s conference was “making friends with your stutter” — despite the fact that it can be a difficult friend to get along with — and coming to realize that “It’s OK to stutter”…Your stutter is actually your authentic voice.

Those who stutter neither ask for, nor expect special compensatory accommodations from the rest of the world. However, they do ask for respect and acceptance from non-stuttering people. For those of us who are fluent, this means learning to be a patient compassionate listener, to maintain normal eye contact as someone who stutters is speaking, to refrain from interrupting by inserting words or trying to finish their sentences, and to avoid making patronizing remarks such as “slow down,“ “take a breath,“ “relax,” or, worst of all, “don’t talk.” In short, people who stutter want us to listen to them actively and attentively — no matter how much time they take to express themselves — just like we’d listen to anyone else. And, people who stutter want us to respect them enough to ask for clarification if we didn’t understand what they said, just like we would in any other conversation.

From my perspective as a professor, as I listened to the college students who stutter describe their personal journeys, I reflected on the behavior of some very different kinds of college students: those who try so vigorously to stymie the speech of anyone with whom they disagree. I wondered to what extent those students would change their perspective — and come to value everyone’s right to speak — if they faced the challenges of dysfluency for just a few days. I wondered if those who would stop others from speaking might thereby come to realize how precious the gift of speech is.

Attending the Friends’ conferences with my son, and sharing his journey of self-acceptance, has changed me profoundly. From him, and other young people like him, I’ve learned to be more patient, kind, compassionate, and accepting of life’s diversity. And, by example, my son has taught me the meaning of resilience, and how to face life’s challenges with grace, dignity, and good humor.

I will forever be grateful for those lessons.

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Stuttering advocate Molly Davis answers FAQ’s about stuttering…