Sugarman syndrome

FOR STUTTERERS, SPEAKING IS NOT JUST A DEVASTATING PHYSICAL HANDICAP BUT A CRIPPLING PSYCHOLOGICAL PROBLEM. NOW GAINING POPULARITY IS A RADICAL--AND CONTROVERSIAL--NOTION: THAT STUTTERERS ARE BETTER OFF LEARNING TO ACCEPT THEIR IMPEDIMENT RATHER THAN STRIVING TO OVERCOME IT.

Head bobbing, face grimacing, Vicki Schutter stood before a microphone in a Cleveland hotel and let everyone in on a childhood secret: often, when she came home from school deeply discouraged, her mother fled to the bathroom in tears and prayed that her daughter would someday "get better." Now the 46-year-old secretary from Houston, Texas, introduced her parent from the stage and declared proudly: "Mother, your prayers were answered."

Many people would find that hard to believe. From the time she was 3 1/2 years old, Schutter has stuttered severely--and she still does so today. Giving her impromptu speech, she struggled through every sentence, opening her mouth unnaturally wide and clamping it shut in the effort to get out her words. But to her audience, members of the National Stuttering Project meeting at their annual convention, Schutter was a triumphant example of the organization's philosophy: that a stutterer's goal should not be achieving fluency, which is nearly impossible, but rather acquiring the coping skills that allow one to stammer openly and to shed the shame and embarrassment that accompany the speech impediment.

In a society where oral fluency is considered a mandatory life skill, such a radical notion strikes many as heresy. And, in fact, the vast majority of people who stutter remain committed to overcoming their problem. Many speech-disorder experts, too, find it difficult to fathom how anyone would willingly go through life wrestling with their words. "I wonder if those people who feel there is no need for professional help or a cure one day have the same feeling about any other disease--cancer, for example," says Ehud Yairi, Ph.D., a professor of speech and hearing science at the University of Illinois at Urbana-Champaign. "Would they say, `Let's just learn to live with it?'"

In many cases, the answer is "Yes." Self-acceptance is a growing movement these days. From the deaf to the obese, people with physical differences are asserting themselves in new ways, challenging the conventional wisdom that they have defects requiring correction and sympathy "It's like everybody's saying, `If you don't like me, fuck you,'" says Lowell Handler, whose book and film Twitch and Shout (Dutton, 1998) chronicle the lives of people with Tourette's syndrome, including himself. "For so many years, what happened was the opposite--everybody had to fit the mold of the Midwestern, all-American, go-to-work-at-9-and-come-back-at-6-type person. People are finally saying, `This is the way I am. I don't want to fix myself to suit everybody else.'"

Stutterers who subscribe to the idea of self-acceptance, as well as speech pathologists who have aligned themselves with the movement, point out that unlike cancer, which is a deadly yet treatable and often curable disease, stuttering is a physical impediment for which little can be done. In fact, fluency remains a pipe dream for most stutterers, despite all the touted remedies. "When I think of successful outcomes, I don't even think of words like `stutter' or `fluent,'" says Stephen Hood, Ph.D., a professor of speech pathology and audiology at the University of South Alabama. "I think of being a good communicator--someone who can talk to anyone at anytime, with minimal negative emotion."

Stuttering afflicts about 2 million adult Americans, and four-fifths of those are men. It also tends to run in families, which suggests a genetic link. The incidence is higher in children, though most seem to recover spontaneously for reasons scientists don't understand. For some, stuttering means an intense and visible struggle to force individual syllables through their lips, a phenomenon that is physically exhausting for the speaker and mentally awkward for the listener. Others stutter mildly, occasionally getting stuck or tripping on sounds. Some manage to avoid outward symptoms by substituting words and feigning ignorance. "They can be so good at avoidance that their coworkers and even their spouse or family doesn't know that the person stutters," writes Thomas David Kehoe, author of Stuttering: Science, Therapy & Practice (Casa Futura, 1997) "Even though their speech sounds fine, these `covert' stutterers can be crippled by severe psychological fear and anxiety."

Accompanying the speech problems are often a whole host of "secondary" behaviors that the stutterer has developed as gimmicks to force out the words. Ward Harkavy, a 51-year-old newspaper editor in Denver, recalls that for years he shut his office door every time he had to make a telephone call. "I had to pound on my leg to get the sound out," he says. A secondary behavior might help temporarily, but eventually it stops working; then the stutterer is stuck with one more socially inappropriate symptom.

Though stuttering is believed to be primarily a physical phenomenon, the stigma attached to it creates a whole array of psychological problems. Every person who grows up with the impediment knows what it's like to feel defective, to break a parent's heart, to have trouble navigating the social milieu of the schoolyard.

Drug and alcohol addiction are common; so is depression. As recently as two years ago, "I'd wake in the mornings, get the girls off to school with a smile and crawl into a ball position in bed," recalls 38-year-old Sally Butcher, a deputy court clerk in Cleveland. "I stayed there until I heard my husband's car pull in the driveway and then would jump up and paste that smile on for all to see. No one knew that anything was wrong. One night, a friend called me and found me sitting here, daydreaming of the way I was going to end my life."

Woody Starkweather, Ph.D., a communication sciences professor at Temple University, calls stuttering a "disorder of the spirit" because it forces so many people to make unsatisfying life choices. "There's a guy in our clinic who's married to somebody," Starkweather says. "He talks about the woman he really wanted to marry but didn't because he couldn't ask." Other stutterers choose careers that minimize their need to speak, giving up their dreams of being teachers, lawyers or journalists. "The thing that makes stuttering a tragic disorder is that people lose touch with where they want to go," he says. "We're all on a path, and the path is, in a way, there already Stuttering can take you away from that."

Much of this stems from the fear of listeners' reactions--and, to a degree, those fears are valid. As a stutterer myself, I've been laughed at, mocked, hung up on; I had the host of an upscale restaurant refuse to make a reservation because "we don't seat people with speech impediments." I had a favorite professor tell me I'd never succeed professionally until I could speak fluently It's not surprising, then, that most stutterers have looked desperately for the cure. "If you limp and use a cane, people open doors for you. If you use a hearing aid, they talk louder," says Jim McClure, a Chicago public-relations consultant. "But if you stutter, people think you're very dumb or psychologically disturbed or a homicidal maniac. That's had generations of us chasing fluency"

Over a 20-year period, I sought help from a psychologist, a hypnotist and myriad speech pathologists. I learned to bounce my hard consonants and prolong my soft ones; talk with a breathy voice a la Marilyn Monroe; "cancel" blocks by repeating the stuttered word; speak at unnaturally slow rates; and let a tranquil air stream dribble from my lips before talking. I've used biofeedback devices that measured my body stress; delayed auditory feedback machines that repeated my own words after a quarter-second pause; and all sorts of relaxation techniques. Though I now have tools to make speaking less stressful, the fact is that I still stutter.

The problem is that stuttering remains a medical mystery. Over the years, there have been all sorts of bizarre explanations. In 1928, Freud protege Isador Coriat suggested that the disorder stemmed from unresolved oral-erotic needs; two decades later, Otto Fenichel claimed in his book The Psychoanalytic Theory of Neurosis that stuttering related to an anal-sadistic fixation. Nowadays, scientists ascribe it to a variety of neurological, biological and psychological factors. There's still no definitive answer, partly because the nature of scientific research "has made it hard for researchers to adopt a cross-disciplinary approach," writes author Marty Jezer in his autobiographical Stuttering: A Life Bound Up in Words (Basic Books, 1997). "Instead of trying to find points of agreement, researchers tend to circle their academic wagons, exaggerate their differences and ward off ideas that challenge or undermine their certainty."

Even though there's no known cure, thousands have put their faith in the latest fad--then blamed themselves when they still stuttered. Vicki Schutter started speech therapy during childhood and continued it well into her 20s. "Back then, my goal was fluency because I thought that was what my goal was supposed to be," she says. In the therapist's office, "I would always get fluent fairly easily The problem was that I couldn't stay fluent. That pattern, which would happen over and over again, was terribly debilitating to my self-esteem."

Michael Sugarman describes a 1977 disability rights sit-in at San Francisco's Federal Building as a pivotal moment in his self-image as a stutterer. "What I came away from the disability-rights movement with was that I didn't want my behavior to represent who I was," he says. That year, he helped found the National Stuttering Project (NSP), which for several years remained a small organization tightly focused on the Bay Area. Today, with 4,000 members, it is the largest self-help organization for people who stutter.

John Ahlbach, a northern California school teacher, recalls the first meeting he attended around the same time. "The camaraderie, the feeling was so deep, I would have walked from here to Bombay if the Project needed it," he recalls. Ahlbach went on to attend some 500 NSP meetings and in 1981 became the organization's director for the next 14 years. Over that time, he strived for one main goal at local gatherings: "making the atmosphere stutterable." He wanted people to have permission to stammer openly; after all, he says, "stuttering isn't something you get over in a week. It's something you need to learn to live better with, week after week and month after month, until guilt is replaced by acceptance and solidarity."

That was not an idea most stutterers--or speech therapists--subscribed to. To them, stuttering was a problem to be eliminated, period. Around the same time, Martin Schwartz, Ph.D., a professor at New York University, was claiming an 89% success rate in curing stuttering, a feat he advertised in a book called Stuttering Solved. "My purpose in writing this book ... is to put an end to stuttering," Schwartz wrote in his foreword. "It is my hope that stuttering as a clinical problem in the United States will become extinct within the near future."

Two decades later, stuttering is hardly extinct. But the National Stuttering Project has grown into a national organization. Its annual conventions are three-day events without a common orthodoxy; they offer seminars on topics ranging from Eastern healing to "How to Succeed in Business With Stuttering." There are workshops for spouses of stutterers as well as for Internet users and people struggling with addictions. Successful role models, like sports photographer Howard Bingham, give keynote addresses. Not-so-famous people, like Vicki Schutter, try their hand at open-mike sessions, usually to thunderous applause and standing ovations. And the atmosphere is still stutterable. "The weight of perfection has been lifted from us," says Marty Jezer, the author.

Still, many NSP members attend speech therapy. The organization, once perceived as being hostile to speech therapists, now welcomes them. Part of the change comes from a concurrent trend in the profession: the growing number of speech-language pathologists who have ditched the fluency model and see groups like NSP as an important part of the healing process for their clients.

Charlie Diggs, Ph.D., director of consumer advocacy for the American Speech-Language-Hearing Association (ASHA), credits stutterers themselves with helping change professional standards for therapy "The trend is away from a medical model" where the doctor has all the power, he says. "Rather, there's a trend toward a mentoring model--the person who treats the stuttering and the person who stutters are in it together."

But not everyone in the profession has embraced the self-help movement and its goal of self-actualization rather than total fluency. While much of ASHA's leadership has proven sympathetic, that reaction hasn't always filtered down to the rank and file. "The typical generalist, they're so heavily trained in speech production and behaviorism that they can't really see it another way," says Temple's Starkweather. And the problem is self-perpetuating, because many universities still teach wholly physical techniques such as relaxed breathing, slowed speech and the fluent repetitions of stuttered words. "You can teach someone how to do it in an hour," he says. "The graduate students are up to their eyeballs with things to do, so the idea of learning something quickly to deal with stuttering--that's so tempting."

Graduate students who want to take a more modern approach to stuttering sometimes meet with hostility from their departments. Peter Reitzes, a speech-pathology master's student at New York University, discovered last year that one of the conditions of being assigned to a practicum was that his own speech needed to be absent of stuttering. "Communication skills must be free from any identifiable disorders," wrote the associate dean in a 1997 letter to Reitzes. "In general, speech must be free of sound and syllable repetitions, prolongations and blocks."

Martin Schwartz, who now heads the National Center for Stuttering, is downright hostile to groups like the NSP, which allow their members individual choices about whether to proceed with speech therapy. "Since I am committed to treating the problem, I would contend that the best possible adjustment a person could make is not to stutter," Schwartz says. "That organization is composed of individuals who have not received continued treatment, and because of their failures are resolved to make the best adjustment, having concluded there is not hope for themselves."

Russ Hicks, a jocular computer consultant from Dallas, begs to differ. He credits his 12-year experience with NSP with helping him face his fear of public speaking. Today, though he still stutters, Hicks is a member of the Toastmasters club, entering and winning local and regional speaking contests.

"This old concept of the gift of stuttering--it's real," says Hicks, 58. "We've gotta use it. We've gotta get out there and let other people hear us stutter. We can be role models for people who need role models. Being able to motivate people--that's so cool. I wouldn't trade that feeling for anything in the world." Anything? Even the chance not to stutter? Declares Hick, "If a person were to say, `OK, Russ, here's a pink pill, you're going to be 100% fluent now,' I would say, `Take a flying leap.'"

RELATED ARTICLE: IS STUTTERING A PSYCHIATRIC DISORDER?

Though stuttering was once believed to be a psychiatric illness, most speech experts now flatly agree that it is not. Yet it is still listed in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Critics believe that listing is not only improper, but leads to incorrect treatment.

"The vast majority of physicians and psychiatrists and psychologists have little or no training with stuttering," says John Wade, Ph.D., a psychologist and counselor at the University of Missouri. "But by inference, if something is in the DSM manual, that implies that the psychiatric community should be able to treat it successfully." Wade has reviewed the psychiatric literature on stuttering, and the few articles he found recommend discredited therapies such as talking to the beat of a metronome.

NSP is trying to get stuttering removed from the next edition of the DSM and is now discussing the issue with the American Speech-Language-Hearing Association. Wade sees a similarity to the withdrawal of homosexuality from the DSM in 1973. "It was removed not on the basis of conclusive research," he explains, "but on the consensus that it was not a proper classification."

Michael First, M.D., Text and Criteria Editor for the DSM-IV Task Force, calls that analogy flawed. Until its removal, "homosexuality was literally considered a mental disorder," says the New York research psychiatrist. But not every condition listed in the DSM-IV is considered a mental disorder; for example, the manual includes lisps, articulation problems and narcolepsy. Listing stuttering, he says, helps educate mental health providers about the speech impediment, which they might encounter with their patients.

"We really don't mean to imply that the APA considers stuttering a mental disorder," First maintains. If there is confusion about this, "we would want to help clarify. I hope we wouldn't have to delete it as the only solution to this problem."--B. Y.

RELATED ARTICLE: SEARCHING FOR A CAUSE

Given how complicated speech production is, it's a small wonder that more people don't stutter. Speech engages a wide swath of the upper body, starting with inflation of the lungs and expansion of the chest cavity and diaphragm. Vocal chords vibrate in the larynx; muscles in the lips, jaw and tongue help articulate the sounds; and the ears provide quality control.

Command central for speech--as well as most everything else--is the brain. "From a neurological perspective, language takes up more parts of the brain than any other task, and it doesn't take much of an error to throw it out of whack," observes Lawrence Molt, Ph.D., a speech pathologist and neuroscientist at the Auburn University Neuroprocess Research Laboratory. "If you hold the motion of a muscle 20 milliseconds, often the system will break down. It will all tumble like a deck of cards."

Do the brains of stutterers behave differently from those of normal speakers? Scientists have been trying to figure that out since the 1930s. In fact, some of the earliest EEG research involved people who stutter. "Unfortunately, the technology of the time for neurological function couldn't tap into subtle differences," says Molt.

The next 50 years did bring some discoveries, including the finding that stutterers did worse than others in distinguishing competing sounds that were presented to them at the same time. But only since the late 1980s have scientists been able to figure out what's really going on inside the stutterers' heads, by mapping blood-flow patterns.

Positron Emission Tomography (PET), which creates color scans of the functioning brain, have provided the clearest picture yet of what happens when people speak. Gerald Maguire, M.D., an assistant professor of psychiatry at the University of California, Irvine, has shown that when stutterers stammer out their words, they have low levels of activity in two parts of the brain key to speech: Broca's area and the striatum. These sites also show elevated levels of dopamine, a neurochemical that regulates the striatum.

Scientists had suspected a link between dopamine and stuttering even before PET scans were available. As part of experiments in the 1970s, people who stutter were given dopamine-receptor blockers like haloperidol (Haldol), which depress the neurochemical's activity in the brain. Though speech improved somewhat, the drugs had intolerable side effects: participants felt like they were mired in quicksand. "Even people who experienced benefit said, `Ah, I'd rather stutter than walk around like a zombie,'" remembers Molt, who stutters himself and was involved in the early trials.

In the last five years, scientists have been developing new medications, particularly risperidone and olanzapine, that block dopamine's activity by at least 50%, but with fewer of the numbing and debilitating side effects. Clinical trials are now under way with these drugs.

So far, according to Maguire, the results are promising. The medications seem to reduce the frequency of stuttering by about half. "It doesn't cure the problem," says Maguire, "but it helps treat it." The drugs are not perfect, however; users complain of lowered sex drive, missed menstrual periods, weight gain and fatigue. Maguire says the initial results warrant further testing, but people shouldn't get too excited, since stuttering appears to be a disorder without a single cause.

Because so many stutterers also have relatives who stutter, one area drawing attention is whether stuttering has a genetic component. Studies of families with multiple stutterers-especially those with stammering twins--strongly suggest a genetic link. Scientists believe that many genes play some part in stuttering, but hope to identify one that is more critical than others.

Still, notes Ehud Yairi, Ph.D., a professor of speech and hearing science at the University of Illinois at Urbana-Champaign in a recent issue of Asha, the official publication of the American Speech-Language-Hearing Association, "the knowledge of how stuttering is being transmitted does not tell us what is being transmitted. We still do not know if stuttering evolves from an inheritance of abnormalities in one or more biochemical pathways involved in speech fluency, or even from structural difference." Faulty brain processing or motor skills as well as altered emotional states or any combination could have an impact.

One of the mysteries of stuttering is why it appears more commonly in men than women. Researchers offer many possible explanations, covering everything from sex-linked genetic factors to the effects of testosterone on the brain. One theory holds that stuttering might be linked to other apparently brain-related syndromes that appear with greater frequency in males, including attention deficit hyperactivity disorder (ADHD), learning disabilities and language development problems. Another popular theory holds that men's brains deal with language differently than do women's when it comes to neural organization and function. "That may make men a bit more susceptible," says Molt.

More research and more sophisticated technology, say scientists, will yield the ultimate answer to why people stutter.--B.Y.

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