Surprising 5 Things I Wish My Younger Self Knew About Stuttering

Woman talking.

When I was growing up as a kid who stuttered, I felt so isolated. I didn’t know anybody else who talked like me, and no one ever talked about my stuttering. My father would yell at me when I stuttered, which made me feel scared and ashamed. When I started school, I remember my kindergarten teacher also reprimanding me for the way I talked, which again made me feel so

I got teased a lot for my stuttering. Kids mimicked me and laughed and I began to not want to talk at all, because of the reactions I got and the feelings I had. It was a very lonely experience growing up thinking I was the only person who talked like this. I felt weird and awkward and like somehow
stuttering was my fault.

I worried about stuttering all the time and constantly figured out ways to not stutter openly. I developed a huge vocabulary as a kid, and became an expert at substituting words that I knew I would stutter on with words that were safer to say. And I also avoided speaking situations a lot.
Sometimes it was just easier not to talk – then it was guaranteed that I wouldn’t stutter.

As I got older, things changed. Dealing with stuttering became a little easier, because I learned to not care so much about what other people thought. And I met other people who stutter, which changed my life dramatically. I realized I wasn’t the only one and there was no need for me to feel so weird and awkward anymore.

These are the things I know now about stuttering that I would have liked to know when I was younger.

1. Stuttering is no one’s fault. It is a speech disorder that interferes with the normal flow of speech production. It is widely thought today that stuttering is neurological and also genetic. No one in my immediate or extended family stutters, but it definitely wasn’t my fault. I didn’t do anything to cause my stutter, and neither did my parents.

2. When you get older, stuttering is easier to deal with. It’s a bigger deal in our heads than it really is to other people. Adults have their own issues – they don’t care that someone else stutters.

3. Stuttering does not mean that we are less intelligent than others or that we have emotional problems. We are not nervous or shy. We just stutter. We’re as smart as anyone else and can do anything that anyone else can.

4. There are lots of people who stutter. In fact, there is a whole community of people who stutter, from all walks of life. People who stutter are very successful and have careers as lawyers, doctors, educators and many more. When I was growing up, I was afraid that I wouldn’t be able to get a good job just because of the way I speak. That’s just not true.

5. Stuttering make us unique. Only 1 percent of the general population stutters, which means I have something that 99 percent of the world doesn’t have. And that’s kind of cool.



Surprising Pathway Implicated in Stuttering

Researchers at Washington University School of Medicine in St. Louis have shown that at least some persistent stuttering is caused by mutations in a gene governing not speech, but a metabolic pathway involved in recycling old cell parts.

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Beyond a simple association, the study provides the first evidence that mutations affecting cellular recycling centers called lysosomes actually play a role in causing some people to stutter.

“This was extremely unexpected,” says senior author Stuart A. Kornfeld, MD, PhD, the David C. and Betty Farrell Professor of Medicine. “Why would impairment in a lysosomal pathway lead to stuttering? We don’t know the answer to that. Partly because we don’t know very much about the mechanisms of speech, including which neurons in the brain are involved. So we can’t fully explain stuttering, but now we have clues.”

Genetic clues to stuttering were first identified in a paper published in the New England Journal of Medicine in Feb. 2010. In it, Dennis Drayna, PhD, a senior investigator with the National Institute on Deafness and Other Communication Disorders and a co-author on the current study, and his colleagues reported results of genetic studies on members of a large Pakistani family, many of whom stutter.

Among most of the stuttering family members, they found mutations in three genes involved in directing proteins to the lysosome. These same mutations were present in many unrelated individuals in Pakistan, North America and Europe who stutter, but not in those with normal speech.

“They found mutations in three genes that encode a pathway for directing newly made lysosomal enzymes to the lysosomes,” Kornfeld says. “And it turned out to be a pathway we discovered years ago. So this is a nice collaboration.”

Until now, one of the three genes, NAGPA, had not been implicated in any human disorder. This is where Kornfeld and Wang-Sik Lee, PhD, research instructor in medicine at Washington University, chose to begin their in-depth biochemical investigation of the mutations that Drayna’s group identified.

NAGPA encodes an enzyme responsible for the last step in “addressing” proteins to the lysosome. Drayna’s work identified three separate mutations in NAGPA in individuals who stutter. And according to Lee’s biochemical analysis, all three of the mutations impaired the enzyme, but each did so in a different way. In general, mutations in a gene often cause the resulting protein to be folded into the wrong shape. Cells are very good at recognizing misfolded proteins and destroying them.

In this case, Lee’s biochemical analysis shows that two mutations appear to trap the proteins in the cell’s protein manufacturing center, though some get out before being destroyed.

“It’s not an all or nothing thing,” Kornfeld says. “Of the material that does get out, its activity is normal.”

But the third mutation causes a larger folding problem and the proteins are destroyed just minutes after being made.

Such findings offer a glimpse at possible future therapies for stuttering. For two of the mutations at least, the problem is not that the protein can’t recycle, but rather that it can’t get out of the cell’s protein manufacturing center and go to the lysosome. If some compound can be found that helps the protein escape, Lee’s work suggests that it would function normally. But Kornfeld cautions that this type of therapy for stuttering is a long way off.

“There are billions of neurons in the brain, and we have very little idea which neurons are involved in speech,” he says. “Our main finding is that these three mutations in NAGPA in people with persistent stuttering all have harmful effects. This is biochemical evidence that these mutations are meaningful, and not just markers of some other genetic change that is the real cause.”

Having described the three harmful mutations in NAGPA, Kornfeld’s group is now performing biochemical analyses on the other two mutated genes Drayna’s group identified – GNPTAB and GNPTG. Drayna and his colleagues estimate that these three mutated genes account for only about 10 percent of people who stutter with a family history. As such, they are continuing the search for additional genes responsible for stuttering.



‘So… What Does Stuttering Feel Like?’

hand drawn chalk illustration of woman with dots anad lines coming out of her mouth

Although it’s impossible to describe exactly what stuttering feels like, there are a few comparisons that closely resemble the struggle that takes place:

First, try thinking of the mouth as a “gate.” Only once the tension grows strong enough to force open the gate do the words finally tumble out, much to the stutterer’s relief. As you know, every sound requires its own unique formation in the mouth. Each of these sounds comes to the gate and pushes… and pushes… and pushes with all its might until it finally breaks through. This pushing causes a lot of tension in the mouth, neck, and shoulder area for the stutterer. I often feel my neck tighten, my shoulders scrunch together, and my tongue push against my teeth.

From this description, I’m sure you can imagine how exhausting it is to stutter. It is much more than just messing up words sometimes. It is a daily battle to break free and to make one’s voice heard. But it is a worthy battle, a battle that strengthens character, teaches endurance, and reminds me of just how precious this life really is.

Secondly, try thinking of the mind and voice as two conflicting sides in this battle. Although stuttering mainly affects speech, it wages quite a war against the mind. The mind stands on one side, absolutely bursting with things to say. The voice stands on the other side, fearing it will crack under the weight of all those words. As I look at the person standing in front of me waiting for my answer, my mind screams out a beautiful response, but my voice freezes. My voice knows what to say, how to say it, and when to say it, but it just can’t bear the load. Finally, my mind and my voice compromise, and I blurt out the first thing that will come out. Sometimes, this means that I end up with a caramel iced coffee instead of a vanilla iced coffee.

In the past, I really let moments like that get to me and make me feel like less of a person. As soon as I was out of sight, I would cry until I couldn’t cry anymore, staring at an iced coffee I really didn’t want. On the hardest days, my mom was right there to encourage me: “Kenzie, you may not be the average speaker, but why in the world would you want to be ordinary when you can be extraordinary? Of all the people in the world, your voice makes you uniquely unforgettable.” I love you so much, Mom.

I would be lying if I told you I still don’t have moments like this. I am still human, just like you. To be honest, there are days when I just want to scream. Stuttering makes me feel so vulnerable. But I’m slowly learning how to find beauty where I used to see brokenness. 

All of us have struggles, but those struggles can be a gift we give to the world. If we can just learn to harness the stutter’s incredible power and redirect it for good, we can encourage someone else who is struggling. We can remind them that they have every reason to dream big and give them the courage to say what is in their heart. I don’t know about you, but I think that’s pretty beautiful!



What It Actually Feels Like to Stutter

I’ve stuttered for as long as I can remember. Anywhere, everywhere. When answering a question in class, talking to friends and family, giving directions to lost tourists, asking to pass the salt in restaurants. The stutter popped in like an uninvited guest, waving a cheery “hello” and digging its heels into the ground as I tried to push it out the door. The answer to living a stutter-free life should have been simple: Just talk slower and the words would sort themselves out. Just think about what you say before you say it.

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But that wasn’t the case. Stuttering was more than peppering a sentence with a few extra syllables. It was the heart-wrenching realization that the word wasn’t coming out of my mouth no matter how hard I tried. I’d stand there, eyes wide, frantically trying to figure out a synonym to use instead. Some other word — any word — that was able to express what I wanted to say while seamlessly placing a band-aid over my damaged sentence. The word eventually came, but with a few modifications. It was distorted, as if a magician took out a bouquet of dead withered roses instead of blossoming red ones. No one knew about the clearly thought-out sentence in my head, or that I’d been silently repeating the correct word over and over.

I recalled some of the worst stuttering moments I’ve ever experienced and I came face-to-face with what stuttering actually felt like. It’s having the blood rush to your cheeks and feeling your ears burn. It’s the short breaths and sweaty palms, the occasional light-headedness and the feeling of someone squeezing your heart until it beats wildly in your chest. It’s the feeling of wanting to run away and never come back, of dashing to make the connecting flight but being too late or making it to the subway only to have the doors close in your face. It’s enough to bury your face in your hands and cry. It’s the hot tears streaming down your face and feeling the pressures of the world consume you, of falling but never touching the ground. It’s the feeling of reaching for something just out of your grasp, of the helplessness and hopelessness swelling inside until you feel like there is nothing you can do, weighing you down until you can’t take it anymore and clench your fists by your side. Only one word manages to slice through the chaos: Why?

Growing up, I’ve been in speech classes and sessions where I learned different techniques to help alleviate the difficulties which resulted in stuttering. At home, there were more times than I can count where, jaw clenched, I repeated tongue twisters in front of the mirror until memorized. I became best friends with Sally who sold seashells by the sea-shore, Peter Piper who picked a peck of pickled pepper and even Susie who was sitting in a shoe shine shop.

But over time, I’ve come to terms with my stuttering. I know I stutter. I’ll probably continue to stutter until the day I die. But the best feeling related to stuttering? The exhilarating, skydiving-through-the-air moments occur whenever I say a sentence without stuttering. When I focus on each syllable of each word of every sentence and execute it correctly, that’s when I feel the adrenaline rush. Everything, from the thoughts in my head to the breath and air in front of me, is just right. When the person I’m talking with replies and we have a conversation, that’s when the confidence builds. We have a back-and-forth game of volleyball with the words being passed across the court until it eventually falls out-of-bounds when the stutter emerges. But when that happens, I’m ready. Because I’ll pick it back up and serve, and score another point in the game of fluent conversation. And when it’s over, and we go our separate ways, I’ll continue to perfect my speech and practice tongue twisters in front of the mirror until the next conversation.



‘Stuttering’ mice may help unravel mystery of human speech disorder


Mice supposedly don’t speak, so they can’t stutter. But by tinkering with a gene that appears to be involved in human speech, researchers have created transgenic mice whose pups produce altered vocalizations in a way that is similar to stuttering in humans. The mice could make a good model for understanding stuttering; they could also shed more light on how mutations in the gene, called Gnptab, cause the speech disorder.

Stuttering is one of the most common speech disorders in the world, affecting nearly one out of 100 adults in the United States. But the cause of the stammering, fragmented speech patterns remains unclear. Several years ago, researchers discovered that stutterers often have mutations in a gene called Gnptab. Like a dispatcher directing garbage trucks, Gnptab encodes a protein that helps to direct enzymes into the lysosome—a compartment in animal cells that breaks down waste and recycles old cellular machinery. Mutations to other genes in this system are known to lead to the buildup of cellular waste products and often result in debilitating diseases, such as Tay-Sachs. How mutations in Gnptab causes stuttered speech remains a mystery, however.

To get to the bottom of things, neuroscientist Terra Barnes and her team at Washington University in St. Louis in Missouri produced mice with mutation in the Gnptab gene and studied whether it affected the ultrasonic vocalizations that newly born mouse pups emit when separated from their mothers. Determining whether a mouse is stuttering is no easy task; as Barnes points out, it can even be difficult to tell whether people are stuttering if they’re speaking a foreign language. So the team designed a computer program that listens for stuttering vocalization patterns independent of language. The program listens to the number of vocalizations per minute and the length of pauses during bouts of vocalization. In humans, it can distinguish a person who stutters from a control subject 79% of the time.

The program showed that mice with mutant copies of the Gnptab gene had less frequent vocalizations and more long pauses than normal mice. However, the afflicted mice produced all of the same sounds in the same proportion as their wild-type siblings, indicating they were still physically capable of normal vocalizations. And an array of cognitive and physical challenges showed that the stuttering mice were otherwise healthy. That suggests that despite the vast differences in complexity between human and mouse vocalizations, mutated copies of Gnptab have similar effects, the researchers write today in Current Biology, which makes the mouse a potentially valuable model for studying stuttering. “We can throw every drug in the book at it,” Barnes says. “We can try to figure out which part of the brain is affected.”

“I think it’s further support that the genes in this pathway do have something to do with speech,” says Stuart Kornfeld, a cell biologist at the Washington University School of Medicine in St. Louis, who was not involved in the study.

But how a single mutation in a common cellular housekeeping gene can result in stuttered speech remains unknown. One possibility is that the neurons involved in speech are particularly sensitive to the waste accumulation caused by missing lysosomal enzymes, Kornfeld says. But there’s no evidence for this yet, he adds; in fact, scientists don’t exactly know which neurons are involved in speech.

The buildup of undigested waste products from a malfunctioning lysosome system is just one possible cause, says Tim Holy at the Washington University School of Medicine in St. Louis, Missouri, one of the paper’s co-authors. “Another possibility is that these genes have another function that has not yet been recorded in any other context.”