Anatomy of a Stutter
New findings from brain studies and genetics are illuminating the causes of this ancient affliction
The hardest word for Kurt Salierno to say is his own name. On a good day, the 42-year-old Atlanta carpenter and minister manages to squeeze out, "Kkkkkkk . . . kkkkkk . . . kkkkkurttt!" without spraying his neighbors. But more often, Salierno stalls and stumbles until he gives up and settles for the name that rolls most easily off his tongue. "Most people I meet know me as George," he says, chuckling.
When Salierno jumbled his speech as a child, his teachers decided he was mentally retarded. One therapist speculated that he harbored unresolved anger toward his father; another advised him simply to relax. In some ways, it's no easier today. When Salierno tried to order pizza a few weeks ago, the clerk thought it was a prank and hung up on him. Security guards recently surrounded him at a Wal-Mart because an employee mistook him for mentally ill. And last year, when he stood up to toast his father at a banquet, he knew full well what he wanted to say, but not a single word would come out. "It's like I'm trapped in a glass capsule," he explains. "I can see out, but there's no way to get out."
Like Salierno, more than 3 million people in the United States--and 55 million around the world--wrestle with this devastating and isolating disorder every day. A 39-year-old physical therapy technician in San Antonio, Diane Tijerina only wants simple things, like being able to ask where groceries are stocked without fearing that the word flour will come out mangled. David Berger, a 26-year-old doctoral student at the University of Pittsburgh, can write eloquently about ancient philosophers but needs 10 seconds to say the word hello on the telephone. And Stephen Essman, an eighth grader in Oceanside, Calif., has adjusted well in middle school but still has to face classmates who call him a "scratched CD."
What causes these people to trip up? "The simplest 4-year-old is more fluent than you," says Gerald Maguire, a psychiatrist who has stuttered for most of his 35 years. Indeed, the vagaries of the disorder have stumped scientists for generations. Why, for instance, do whispering, acting, talking to pets, and singing often make the disability disappear? Why does it occur roughly four times as often in men as in women? And why do some children eventually outgrow it?
A small yet energized group of researchers is now making headway toward a new scientific understanding of this ancient affliction. Coming from a variety of fields, including neuroscience and radiology, genetics and speech pathology, these scientists have begun to uncover the biological roots of this enigmatic disorder. "For a long time, stuttering was thought to be psychogenic, rooted purely in psychology," says Allen Braun of the National Institute on Deafness and Other Communication Disorders. "That's clearly not the case now."
Genetic quirk? Now the focus is on genes and the inner workings of the brain. Investigators announced last November at the American Speech-Language-Hearing Association meeting that they had found the first tangible evidence of a genetic aberration underlying at least some cases of stuttering. What's more, new PET imaging studies have revealed striking differences in the brain physiology of stutterers and nonstutterers. Stutterers, it turns out, may be using the wrong side of their brains when they speak. "The right hemisphere seems to be interrupting or interfering with the left hemisphere," says Peter Fox, neurologist and director of research imaging at the University of Texas Health Science Center.
The new findings don't mean that the crushing anxiety many stutterers feel has nothing to do with their affliction. But researchers now suspect that psychological factors, such as nervousness and stress, are not the starting point; instead they "aggravate, exacerbate, and perpetuate," says Edward Conture, professor of hearing and speech sciences at Vanderbilt University. A neurological mishap may cause a person to stutter on a word for the first time; later the stutterer might remember the embarrassing experience, making him more likely to stumble over the word again. "The memory locks in. All the associated feelings and emotions are locked in, too," explains Catherine Otto Montgomery, director of the American Institute for Stuttering in New York City.
Take Sean Lebowitz, an 18-year-old freshman at SUNY-Binghamton. His nemesis is the expression thank you. Like other stutterers, he can often anticipate trouble and talk around a vexing phrase. But there aren't any handy synonyms for thank you. Lebowitz recalls getting hung up on the words at some point during his childhood; now he dreads them: "My heart pounds. I start sweating."
Through the ages scientists have offered a variety of explanations for debilitating stammers. The Roman physician Galen believed that the stutterer's tongue was either too long or too short, too wet or too dry. Others have implicated everything from sibling rivalry to childhood trauma to too much sex. In the time of Freud, analysts blamed repressed psychodynamic conflicts, and even today some therapists view stuttering as an outward sign of emotional distress.
Attempts at cures have been no less peculiar. Ancient doctors advised everything from blistering the tongue to wrapping it in little towels soaked with lettuce juice. From the mid-1800s on, practitioners tried surgical remedies such as drilling holes into the skull or cutting out pieces of the tongue. Even today, one of the most common treatments for stuttering--intentionally prolonging syllables--is not a radical departure from the puritanical preacher Cotton Mather's 1724 advice to speak in a "very deliberate Way . . . a little short of Singing." Although this approach to therapy has helped many stutterers--including Salierno, who attended an intensive prolonged-speech program in January--it does not work for everyone.
But new remedies may be at hand. The quest to decode stuttering now has new life, as it benefits from technological advances, especially in the field of neuroscience. For example, Roger and Janis Ingham, professors of speech and hearing sciences at the University of California-Santa Barbara, have been peering into the brains of dozens of stutterers with PET scans to find out what is going awry. Over the past few years, and most recently in the November issue of Brain, the duo, working with UT's Fox, have reported evidence of neurological "miswiring," primarily in the right side of stutterers' brains. PET scans of nonstutterers show both hemispheres lighting up when they speak, with more activity on the left. By contrast, a stutterer has more hot spots on the right, possibly interfering with what should be left-sided speech production. When stutterers have moments of fluency, interestingly enough, their scans start to resemble those of nonstutterers.
Tuning out. The researchers also found that a region of the brain that processes hearing is deficient in stutterers while they are speaking. This region is active in fluent speakers, but it's nearly silent in stutterers. The finding seems to indicate that the stutterer is tuning himself out as he's trying to speak, thus contributing to or simply blocking out the stammering speech.
These unusual brain patterns emerge even when stutterers merely imagine that they are stuttering--without actually moving their mouths or emitting a sound. Such data suggest that the brain's irregular activity isn't simply a byproduct of the contorted and noisy struggles of speaking. Rather, it is directly related to the underlying defect, the researchers conclude.
All of this aberrant neural activity probably sends faulty messages to the main speech-producing muscles--the vocal cords, tongue, diaphragm, and lips. "Stutterers don't have a problem planning a message. They have adequate language and grammar skills," says Janis Ingham. "Where they lose it, it looks like, is in selecting speech sounds, sequencing them, and figuring out which muscles need to be turned on or off to produce them."
But the roots of stuttering most likely go even deeper. Research groups in Utah, Illinois, and Maryland have been searching for a stuttering gene--or, more likely, genes--and they have some tantalizing leads. For example, for the past three decades researchers have studied twins, adopted children, and large families to tease out inheritance patterns. The findings have discredited the commonly held view that stutterers "learn" to stutter because they are surrounded by stuttering relatives. Instead, the studies bolster the notion that the problem arises from a heritable predisposition--in at least some cases. About half of stutterers have an afflicted relative.
"Pen in a haystack." Now, using more sophisticated genetic tools, scientists can try to home in on the actual genes underlying the disorder. One team of researchers, led by University of Illinois-Urbana-Champaign scientist Nicoline Ambrose, discovered through statistical analysis of inheritance patterns that stuttering may be due to a single major gene along with a few less important ones. "It was a first glimpse of aha!" says Ambrose. "That made it a little bit more findable than a needle in a haystack. Maybe more like a pen in a haystack."
The genetic trail has gotten hotter recently. University of Chicago geneticist Nancy Cox and her team scrutinized hundreds of samples of DNA from an isolated religious community, known as the Hutterites, in rural South Dakota. Genetically isolated populations like the Hutterites provide a valuable research opportunity because there is less variability in their DNA pool. After analyzing the data last fall, the scientists found three different locations in the genome where stuttering genes may lie. Another research group, led by Dennis Drayna of NIDCD, also believes it has found the general location of a stuttering gene. His team examined DNA from a diverse group of stutterers, from California to Canada to Puerto Rico. The findings, due to be published soon, may help illuminate the genetic roots of stuttering in the general population. Cox's team also plans to scour the human genome for DNA snippets linked to children who "outgrow" their stuttering, as 40 percent to 80 percent eventually do. These children's genetic makeup might be different from that of children whose stuttering persists into adulthood.
If the exact mechanisms can be worked out--which genes, how those genes create proteins, and how those proteins function in the disorder--scientists foresee a future in which stuttering could be treated like other medical problems. "Nervousness is not a molecule we can do something about," says Drayna. "Genes and proteins are." Indeed, stutterers might someday visit a doctor's office, get a prescription for medication, and eradicate their disability much the way patients treat high blood pressure and childhood diabetes today. Or parents could swab their child's cheek and use the DNA sample to determine if early intervention is necessary.
These medical advances are most likely years off in the future, although some psychiatrists are already experimenting with antianxiety and antipsychotic medications, such as Alprazolam, Risperdal, and Zyprexa, to ease stutterers' symptoms. Risperdal, for example, blocks the actions of the neurotransmitter dopamine and has helped relieve symptoms for some stutterers.
But for many others, the most immediate hope comes not from drugs but from behavioral therapy that aims to rebuild speech from scratch. After years of frustration with unsuccessful treatments, Kurt Salierno was willing to do just about anything; he wanted among other things to be able to toast his father before his death. So Salierno decided to try Hollins Communications Research Institute near Roanoke, Va., one of the best known of several boot-camp-style therapy programs around the country. The 19-day institute has graduated high-profile alumni like Annie Glenn (wife of astronaut and former Sen. John Glenn) and ABC news reporter John Stossel.
Hollins's basic approach is based on deliberately prolonging syllables, first quite slowly and then much more quickly. Acquiring this new way of speaking, says assistant director Catherine Wohlberg, is "like learning how to play an instrument and getting it up to tempo." Sitting in front of a computer, Salierno stretched out thousands of words--like economy: "eeeeee . . . caaaah . . . nooooh . . . meeee"--all the while meticulously trying to move his jaws, tongue, vocal cords, and breathing muscles the way nonstutterers do.
After more than 80 hours of training, Salierno tested his new speech on the phone and at the local mall. He called up a restaurant to see what time they opened and closed; he asked the price of a model airplane in a hobby shop. These types of interactions normally would not have been worth the trouble to Salierno, but with his new speaking skills, he felt comfortable enough to try, and it worked. And since then, Salierno reports, he hasn't even stuttered on his name once. "People have asked me almost every other day, `You're not stuttering anymore--what happened?' "
The thrill of fluency has delighted many graduates of the program. Three out of four alumni retain their speaking skills after a year, according to follow-up studies by Hollins. But critics of this and similar approaches contend that speakers often talk so slowly that they sound robotic. What's more, it often takes an iron will to maintain the skills. And most worrisome, they say, success may be fleeting. "You gain this deep-rooted fear of speaking, and if you don't deal with it, you won't get rid of stuttering," says Jane Fraser, president of the Stuttering Foundation of America.
Strategies like Hollins's assume such fears will disappear with the onset of stutter-free speech. But more and more, therapists and school speech pathologists are intentionally confronting these kinds of psychological issues directly. One program in New York City, for instance, asks participants to deliberately put their stuttering on public display, by cold-calling people on the phone or introducing them- selves to strangers on the street. (Such an exercise is emotionally wrenching: One apprehensive stutterer said she'd rather walk down the street naked.)
Social stigma. Many stutterers, in fact, seem more worried about the social stigma they face than the actual fact of their garbled speech. "If you asked me whether I'd rather have a cure for stuttering or for people to know about it and understand it, I'd rather have people know," says Jack Braha, a recent University of Pennsylvania graduate. When Braha sent out resumes to Wall Street last semester, he got interviews at several top-notch firms. But he received no job offers, except one from a company where he had previously interned. Braha knew he faced stiff competition, but he suspects that wasn't the only factor: "The minute they heard me--and I know it, it was so obvious--I was laughed at, like what's wrong with you?"
Braha isn't alone. Studies of attitudes toward stutterers reveal widespread bias. In one 1997 survey, nurses filled out questionnaires about a hypothetical stuttering doctor and were asked to appraise the physician's personality traits. They deemed the stutterer more afraid and nervous and less mature, intelligent, and educated than a hypothetical physician who did not stutter. Even a poll of speech pathologists found that more than a third of the group expressed the view that people who stutter have psychological problems. Reviewing these findings, Gordon Blood, a professor of communication disorders at Pennsylvania State University, says that the persistence of such potent stereotypes can in itself worsen a stutterer's plight. "A listener's reaction plays a huge part in this disorder," he says. "What we're really asking is for people to be civil" (box, Page 48).
For Frank Garcia, trying to hide his stutter in high school for fear of get- ting teased was so exhausting that he dropped out during junior year. The 32-year-old San Antonio businessman says stuttering has always depleted his self-confidence. But when he signed up--with one of his brothers, who also stutters--for the Inghams' brain-scanning study and learned there was some kind of neurological defect behind the disability, he felt a renewed sense of self-worth. "It's a validation of who I am, no different from the color of my skin or the color of my hair."
For Kurt Salierno, the disorder that has made him twitch and tremble has actually propelled him forward in unexpected ways. Salierno grew up thinking he was doomed to work at a gas station, but he took his stuttering and made something of it. For 25 years, on top of his other jobs, he has been a motivational speaker to young adults, using stuttering to bolster his message. "I challenge the kids to be sensitive," he says, "and to accept yourself for who you are, not to let a handicap slow you down." Salierno also helps run and ministers at a homeless shelter for about 1,000 men in Atlanta a few days a week. "My compassion for people in need developed from my stuttering," he explains. "The guys can relate to me and my struggle. I can be a kindred spirit."
In the end, scientists hope their findings will help debunk stereotypes and stigmas, even among stutterers themselves. "People who stutter are relieved to find out that they are not crazy, that they don't have a defective personality," says Janis Ingham. "To know `my brain is different than yours but my soul isn't' is a tremendous thing."
The stuttering brain
Sluggishness in the brain's auditory cortex and hyperactivity in the speech center may both contribute to the disorder. Activity in the brain's visual area-not involved in speaking--is identical in stutterers and nonstutterers.
[PET scan data are not available.]
[Scan key] Highly active areas; Relatively inactive areas
PET scans taken while reading aloud
Speech-producing area Auditory area Visual area
Nonstutterer Inactive Active Active
Stutterer Hyperactive Less active Active
Source: University of Texas Health Science Center at San Antonio
An etiquette guide
How to make conversation with a stutterer a less frustrating experience for everyone involved:
Patience and pacing. The cardinal rule is never finish a stutterer's sentence. It's insulting--and even worse when the completed sentence is wrong. Also, use a relaxed pace in your own speech, but never so slow as to sound unnatural.
Body language. Use natural eye contact and facial gestures to show you're listening. Also, be aware of the special difficulty of phone conversation, in which such cues are missing.
No advice. Avoid remarks like "slow down," "take a deep breath," or "relax." Such simplistic, often demeaning advice doesn't help a stutterer.
Famous stutterers
1. Jack Welch
General Electric's CEO beat expectations. "Here was this short, stuttering guy who only knew the plastics business," says a former GE exec.
2. John Updike
The author chose to express himself in writing because, when he stuttered, his upper lip hardened and his mouth distorted like "a leather purse being cinched."
3. Marilyn Monroe
Her breathy voice may have been an attempt to be fluent rather than sexy.
4. James Earl Jones
He discovered in high school that he could overcome stuttering by reciting Shakespeare or Edgar Allan Poe.
5. Moses
His brother, Aaron, spoke for him because, as he told God in Exodus, "I am not eloquent. . . . I am slow of speech and of a slow tongue."
6. Carly Simon
She felt so strangled when talking that she "did the natural thing, which is to write songs, because I could sing without stammering."
7. Winston Churchill
His teacher warned: "Because of his stuttering he should be discouraged from trying to follow in his father's political footsteps."
[Picture captions]
Syllables first
After years of speech therapy, 13-year-old Stephen Essman entered an intensive program at Hollins Communications Research Institute in Roanoke, Va. The goal, says his mother, Marti, was "to fix the problem and then see what happens to his anxiety."
Mall challenges
As part of a 19-day treatment for stutterers, Jack Braha, 21, tested his new speaking skills by asking for assistance at a local shopping mall. A budding investment banker, he wants to refine his speech for the high-stress, highflying atmosphere of Wall Street.
Teenage tolls
Frank Garcia, 32, plans to run for mayor of San Antonio someday, and 38-year-old Edward Garcia is a market manager at a local supermarket. But the brothers paid a price early on, withdrawing socially to avoid the stresses commonly endured by stutterers.
Daily maneuvers
When Sean Lebowitz, 18, takes a taxi, he jots his destination down on a slip of paper to avoid talking to the cabbie: "From the moment you get up, every decision you make is based upon your speech."
This story appears in the April 2, 2001 print edition of U.S. News & World Report.