About the Author: Rita Thurman, M.S., CCC–BRS-FD received her Master of Science degree in Communication Disorders from Utah State University in 1977.  She has worked in the schools and in clinical settings in Utah, Idaho, Illinois, Montana and North Carolina.   She has been in private practice in Raleigh, North Carolina since 1985. Her practice focuses on the evaluation and treatment of children, teens and adults who stutter.  She is a Board Certified Specialist in Fluency Disorders and serves on the Executive Board of the American Board of Fluency and Fluency Disorders.  Ms. Thurman was awarded the North Carolina Clinical Achievement Award in 2012 and the NSA Speech Language Pathologist of the year in 2015 for her work to improve services for children and adults who stutter. Ms. Thurman is a National Stuttering Association Adult and TWST (Teens Who STutter) Chapters leader, coordinates a Parent-Child Stuttering Information Group and sponsors an annual Friend’s Workshop in North Carolina.

A few months ago, a 13-year-old boy and his father came to my office for an evaluation.  The son had been going to therapy for stuttering since he was four years old.  But when I asked the father the reason for the visit, the father said: “We want to find ways to help J. with his bumpy speech.”

Why is it so hard for parents, therapists and even people who stutter to say the “S” word?  Why do we insist on terms like “bumpy speech” or “dysfluency”?  The misuse of terms is not only confusing, but perpetuates the stigma of stuttering. If you can’t even say the word, it must be horrific.

Stuttering and the Preschool Years

But let me back up.  I use “bumpy”, “stopped speech”, “smooth” when a child’s developmental vocabulary requires description rather than labels.  At the age of three and four, those terms make more sense to a child.  But I also tell them: “Sometimes people call that stuttering and you may hear that word.”  I often hear a gasp from a parent when I say that or when I talk about a preschool child’s reaction to their stutter.

When I treat preschool children who stutter, I talk to them about what happens when they stutter, how it feels when it happens and how they react to it.  During a therapy session with a four-year old, after he experienced a significant block with struggle behavior, he stopped and heaved a giant sigh. When I said: “Wow, that was really hard, what did that feel like?”  He replied: “It felt like a big rock came up from my tummy and stuck in my throat so that the word couldn’t come out.”  Wow!  For someone that young to have that insight….it would be a shame to dismiss it or pretend we didn’t notice. It is important to give validity to those physical and emotional feelings as soon as they emerge.

During another session, a different four-year-old described his block by saying: “I don’t know what happens, the word just won’t come out.”  When I asked: “What do you do when that happens?” He said: “I use a different word.”  Avoidance behaviors can start young and need to be addressed.

During the NSA Research Symposium this past summer, Rick Arenas presented his work on anticipation in people who stutter.  His research indicated that a large percentage of people who stutter anticipate the moment.  If a child is reacting to his stuttering moment before it occurs, he has struggle behavior in the moment of stuttering, he senses shame/frustration/embarrassment following the stutter –you need to be there to validate those feelings, not dismiss it.

Sure…many preschoolers are oblivious to the repetitions and blocks, continuing to describe their latest Lego creation, playground adventure or tea party.  Is it OK to talk to those preschoolers about stuttering?  Absolutely! Let them hear the language from a concerned, caring adult–before they hear it from the gutter.

Recently, a Speech Language Pathologist who treats preschool children told me that her strategy for treatment was to make preschoolers think that they were coming in to play games, implying that she would never talk to a preschool child about the reason he was in therapy or the goals of the session. While games can certainly be an effective way to engage with children of that age, it can be very confusing for a child to know that even adults don’t understand why he stutters and worse, can’t talk about it.

Stuttering and the School Aged Child

As children grow, the way we talk about stuttering changes because the experience of stuttering changes.  As children develop and begin to experience stigma in communication situations, we need to recognize and give language to that experience.  In a study about stigma associated with mental illness, Biernat & Dovidio state: “When people reported concealing the true nature of their illness by using ambiguous terms, they were unable to face the challenges of their illness.”

Recently a parent of a third-grade child contacted me to say she was seeking therapy for a “fluency disorder.” When I asked the mother, what type of stuttering she saw at home, she said, “Oh, he doesn’t stutter, he has a fluency disorder.”  Although this family had met with multiple educational professionals when her child had been tested through school, none of them had used the term “stutter.”  I suspect they considered “fluency” a euphemism, when in reality it only served to confuse the true diagnosis and perpetuate the stigma of stuttering.

At this age, stigma can frequently lead to bullying. Janet Beilby’s research revealed “that young people who stutter experience greater adverse impact on their lives and more bullying than their fluent peers.”  Children often don’t want to discuss bullying because they want to handle it themselves, are embarrassed by the event, or are worried that their parents will overact.

But like stuttering, talking openly about bullying can have a positive impact. I have a monthly “communication group” for children ages 7-11 years of age who stutter.  Our meetings give them a chance to develop communication skills but also to talk about stuttering openly with their peers. In the course of our discussions, we often role play bully situations.  When we present the skits and role playing to parents at the end of the session, parents are usually more uncomfortable discussing these topics than the children. But like stuttering, bullying needs to be acknowledged and addressed.

Stuttering and the Teen/Adult

The two greatest social sins a teen can commit is to do something that is “awkward” or something that makes them appear vulnerable.  Stuttering can often result in either or both. In order to elliminate this awkwardness, I like to tell the teens that I work with a quote from one of my favorite comedians: “Tragedy + Time = Comedy.”  Although it can be tough, it is possible for teens to find humor in stuttering-with guidance. This is best accomplished but putting teens who stutter together in a supportive environment while discussing those awkward situations and how to deal with each.

One night in my NSA TWST (National Stuttering Association– Teens Who STutter) chapter, we were discussing jokes, bullying, and teasing.  One teen reported that his first-grade teacher asked him a question in front of the class and when he blocked on his answer, she said sarcastically: “Do we need to call an ambulance?” Although the parents in the room became teary eyed, the teens recognized the enormity of the situation and then created humorous ways that the teacher should have been tortured. They were able to reflect on an upsetting incident with humor….together.

In both my TWST and adult chapters, we try to use the word “stutter” to describe and desensitize to the word.  Some of my teens and adults will tell other people they have a “speech impediment” or say: “I have trouble saying….” This ambiguity leaves the listener questioning whether the person who stutters had a stroke, has word retrieval issues or learning difficulties.  Just saying: “I stutter, so sometimes you will hear that” can be freeing and kind to the listener who is trying to figure out what is going on or how to respond.

Disclosure or “advertising” a stutter can help reduce anxiety and stress in a situation.  The authors Blood, Blood, Tellis and Gabel discuss the importance of talking about stuttering and telling people about your stuttering to reduce stress and isolation. Conversely, in his studies involving people with social anxieties and depression, Goffman, found that patients’ attempt to avoid disclosure resulted in stress, isolation and a sense of shame.

Desensitizing to the word may be a first step for many people.  I give homework assignments to teens that require them to say the word at least once a day.  I believe that saying the word out loud empowers the person who stutters and takes power away from the word that often connotes shame and sadness. After all, the famous villain in Harry Potter was referred to as “he who must not be named.”  What power Voldemort held because everyone was too afraid to even say his name!

When I pair mentor groups in therapy (an adult working with a teen, or a teen working with a child) I always ask the mentor to tell their mentee about their stuttering before we start.  I love the look on a child’s face when a teen says: “When I stutter….” Or “I stutter…” –They have connected in a unique way and were not afraid to say the word out loud.  Often in this situation, the child says: “Wow, me too!”

As we all strive to develop a World that Understands Stuttering, let’s start by using the real vocabulary:  STUTTERING, STUTTERING BLOCKS, STUTTERING PROLONGATIONS, STUTTERING REPETITIONS.

Words have power and energy.  Let’s direct that power and energy towards positive outcomes for people who stutter.  Go ahead…say it out loud.

References

Arenas, Richard M. Ph.D., University of Mexico  Contextual Variability of Stuttering:  Its impact on quality of life and how anticipation may be playing a role.  2017 National Stuttering Association Research Symposium

Biernat & Dovidio—Stigmas and Stereotypes The Social Psychology of Stigma 2002

Beilby, Janet. —Social Impact of Living with a Stuttering Disorder: Knowing Is Not Enough. Seminars in Speech and Language. 35 (2)–2014

Blood, Blood, Tellis, Gabel  —The social and communication impact of stuttering on adolescents and their families:  A preliminary study of self-esteem, stigma, and disclosure in adolescents who stutter  –Journal of Fluency Disorders–Volume 38, Issue 4, December 2013,

Goffman E. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs NJ: Prentice Hall; 1963.