Getting the word out [The Journal]
by Hope Katz Gibbs
May 24, 1998
Aesop stuttered. So did Moses, Lewis Carroll and Charles Darwin.
So do actors James Earl Jones, Anthony Quinn and Bruce Willis and singer Carly Simon. They’re among the 3 million Americans who are disfluent. That clinical term simply means that speech has been disrupted by either the inability to start a word or frequent interruptions of that first syllable that seems to say, “No, I don’t want to get out.”
“Much of the stuttering phenomena is underground, in the sense that it isn’t as overtly seen by listeners as is the repetitions, blocks, grimaces and so forth [that a stutterer makes],” says Mary Weadon, 45, of Reston, VA.
She ought to know. She’s been stuttering—and trying to cover it up—since she was 4 years old.
“I’ve refrained from speaking, substituted words, which are easier to say, and changed sentence structure, feeling shame about the way I sound and feeling guilty because I didn’t speak up,” she says.
Weadon, a special education teacher at Floris Elementary School in Herndon, Va., says she was so embarrassed in grade school about her speech impediment that she’d deliberately answer questions incorrectly because the wrong words were easier to say.
She appealed to her teachers that she be able to submit written reports instead of oral ones. And although she wanted to run for class president, she didn’t dream of it due to the speech she would have needed to give in front of the entire student body. As an adult, she sat silent during dinner parties—fearing she’d embarrass herself by telling a story at the table.
Then two years ago, she decided enough was enough. She began attending Vivian Sisskin’s group therapy sessions. The speech therapist and instructor at the University of Maryland’s Hearing and Speech Sciences department helped her overcome her shame.
“I think I have finally moved forward,” says Weadon, who says she is no longer willing to hide the fact that the stutters. In fact, she recently decided to announce it to the world via her license plate, which reads: “MMMMARY.”
“When stutterers finally get into therapy, they face their deepest fears that others will know they will stutter,” Sisskin says. “They come out, in a sense. Oftentimes, their friends didn’t even know they stuttered because they hid it so well.”
WHY DO PEOPLE STUTTER?
To understand what causes someone to stutter, it is helpful to know that precise movements of the voice, throat, palate, tongue, lips and teeth produce speech. These movements are coordinated in the brain and monitored by hearing and touch.
As a person takes a breath, the vocal cords come together. The air held in the lungs is gradually released and as it passes through gently closed vocal cords, it causes a vibration. As sound passes through the throat and into the mouth or nose, the vibration then produces the voice. The. palate, tongue, jaw, and lips move in precise ways to modify sounds and make speech.
However, when the signal is crossed between the brain and nerves, or muscles that control speech, people stutter.
Like Weadon, Sisskin says most stutterers develop tricks to try to uncross the signals. Some stutterers avoid speaking altogether, and others avoid words that give them trouble.
One of Sisskin’s patients has a special taste for Guinness beer, but stutters on the word. So, when he orders it, he asks for a stout. The waiter almost always says the establishment serves Guinness, so would that be OK? He nods and smiles and avoided personal embarrassment at the same time, while getting exactly what he wanted.
What stutterers really want, though, is to speak clearly. They can’t, experts say, because stuttering is a physical problem. Researchers have found that people are born with a predisposition to stuttering and often it runs in families.
Frequently, it is the father the passes on the trait. Onset generally occurs in children between the ages of 2 and 6, when they are developing language skills. Boys are three times more likely to stutter than girls.
The good news for sufferers is that up to 80 percent recover—for only 1 percent of adults stutter.
For centuries, however, the cause of stuttering was unknown and treatments were often barbaric. At one time, doctors suspected that the stutterer’s tongue was too big for the mouth so cut off pieces of the tongue or snipped the frenulum, which is the small piece of tissue that connects the tongue to the mouth.
Some doctors told stutterers that speaking with rocks or marbles in their mouths would fix the affliction. Others advised patients to “chew” their words or change the pitch of their voices.
Actually, pitch alteration—or even adopting a foreign accent does help. For a while.
“Anything that distracts a stutterer, or takes away the fear of faltering on their speech will be an improvement,” Sisskin says.
In fact, some sufferers slap themselves on the leg when they think they are about to verbally stumble. The jolt temporarily unlocks the blocked word or phrase. Eventually, though, the slap doesn’t work and the sufferer needs to find new tricks.
This is “avoidance behavior,” and unfortunately the stutterer becomes a walking museum of mental tricks that ultimately are debilitating. “They may be clever momentary solutions, but eventually the stutterers will draw deep inside themselves, ashamed to even make eye contact,” Sisskin explains.
But there is help. Fluency shaping is one approach some psychologists and speech therapists take, which teaches the stutterer a new way to speak. They are taught new speech, voice and respiration patterns.
Another approach is stuttering modification, which is Sisskin’s treatment of choice. Therapist and stutterer work toward achieving forward-moving speech patterns—not total fluency. The reason, Sisskin says, is that some stutterers just won’t overcome the disorder completely.
In fact, Sisskin has helped her husband, Peter Kupferman, overcome his stuttering. Although he’s had years of treatment and is able to speak fluently, moderate telecommunications conferences and speak in public—he admits that down deep he’ll always be a stutterer.
“Stuttering is a physiological problem with psychological and emotional components,” Sisskin realizes. “The severity of the disorder is more related to a stutterer’s ability to cope with the situation. Those who don’t care that they are disfluent tend to move through it and speak anyway. Those people are the most successful in terms of recovery.”
However, those who hang every problem on the fact that they stutter—and change their life’s goals because of it—are the ones that perpetuate more stuttering, Sisskin says.
Doctors and researchers, though, are working to find ways to give stutterers more choices.
Researchers continue to study the problem, including Dr. Allen Braun, acting chief of the Language Section of the National Institute on Deafness and Other Communication Disorders in Bethesda, Md. Last year, he took scans of stutterers brains, hoping to find out if their brains functions differently than fluent speakers.
He found that during stuttered speech, the anterior regions of the brain—the parts that play a role in the regulation of motor functions—were disproportionately active in the right hemisphere. But the part of the brain that plays a role in perception and decoding of sensory information was relatively silent in both hemispheres. So even when stutterers are speaking fluently, their brains work differently than non-stutterers.
The finding is dramatic, Braun knows, for it puts him one step closer to finding a cure. Braun is currently pursuing another research project to identify the gene responsible for causing stuttering. Find the gene, he says, and perhaps doctors will be able to pinpoint other effective therapies.
Already, researchers suspect that stutterers may have differences in the functioning of dopamine—a chemical messenger that carries information from one nerve cell to another and is essential to normal nerve activity in the brain. Dopamine is involved in everything from cognitive processes to the mechanism that regulates movement. Too little dopamine is present when someone suffers from Parkinson’s disease. Too much dopamine is produced when someone has Tourette syndrome.
There are now drugs available to affect the dopamine levels, such as anti-psychotic drugs like risperidone or Haldol. But the side effects can be prohibitive and include intense drowsiness, dry mouth, and anxiety.
The best treatment Braun and Sisskin agree, is early intervention. Children as young as 2 that show signs of stuttering should be looked at for the risk factors.
“Do not just look at a child’s disfluency because some stuttering is normal when they are learning to speak,” Sisskin says. “It may be time to be concerned when their speech includes holding sounds for long periods, or if their repetitions include uneven stress and rhythm.”
Additional warning signs include awareness, concern or frustration on the part of the child, such as if they butt their heads against something, or say, “Mommy, I can’t talk,” then a specialist should be consulted.
And, don’t just ignore a child’s disfluency and hope it will go away.
“If your child is aware of the problem, then it is better to acknowledge that speech is bumpy, and tell them that is OK,” Sisskin advises. “Simply ignoring the situation may make your child think it is so bad that even Mom and Dad can’t cope with it.”