Speech-language pathologists have made progress in treating children who stutter, yet some parents still receive outdated advice about stuttering from physicians and other professionals. People who stutter report greater success with speech treatment that focuses on attitudes than on speech modification. And active participation in self-help activities appears to reduce the negative life impacts of stuttering. These were among the findings in a survey conducted last year by the National Stuttering Association (NSA).
The NSA, the largest group of people who stutter in the United States, surveyed 710 of its members in 2002 to gather information about stuttering from the perspective of people who stutter. Respondents included 544 adults who stutter and 98 parents of children who stutter, perhaps the largest group ever surveyed about these subjects. The findings suggest some preliminary conclusions and will lay the groundwork for more detailed study.
The survey confirms anecdotal evidence suggesting that parents of stuttering children do not always get sound advice from professionals. One-quarter of the parents surveyed said they had been advised (primarily by physicians and pediatricians) to postpone speech treatment until their children were older. While this was conventional wisdom years ago, many clinicians today feel that children have the best opportunity to recover from stuttering when treatment begins as early as preschool.
Consumers who stutter often find it difficult to evaluate stuttering treatment because little comparative data exist on treatment outcomes. Some treatments claim success rates based on short-term clinical results, but long-term success is elusive and relapses are common. Because the greatest consequence of stuttering is the effect it has on a person's life, traditional measures that count the number of times a person stutters are not the most relevant indicators of the success of treatment.
The survey confirms that while virtually all stuttering treatments are effective for some, no one approach works for everyone. Some treatments aim at completely fluent speech, others help clients stutter more easily with less struggle, and still others use desensitization and other methods to achieve attitude change. Since the NSA does not endorse any specific treatment or approach, the findings from this survey represent a variety of experiences in treatment.
Adults who stutter who were surveyed reported greater success from attitude-changing treatments than from those that emphasize speech mechanics. "Changing my attitudes toward speaking and stuttering" was rated very successful by 50% of those who had undergone that kind of treatment, somewhat successful by 39%, and not at all successful by 10%. "Teaching me ways to stutter more easily" was considered very successful by 30%, somewhat successful by 57%, and not at all successful by 13%. "Teaching me ways to speak so that I would not stutter" was judged very successful by 19%, somewhat successful by 53%, and not at all successful by 27%.
The survey also confirmed that speech treatment is not a one-time solution: 85% of adults who had undergone speech treatment had two or more different treatment experiences, and 31% had five or more.
Many survey respondents also had tried alternative remedies ranging from hypnosis and psychiatry to assistive devices, motivational courses, medication, and herbal remedies. Although some respondents reported success, these methods were significantly less successful than speech treatment.
In addition, 51 respondents reported trying an extraordinary variety of other treatments, including electroshock, acupuncture, chiropractic treatment, tongue surgery, Native American sweat lodges and vision quests, and a faith healer, indicating how determined some people are to find something—anything—to end their stuttering.
The study confirms anecdotal evidence of the life impact of stuttering. Eight out of 10 adults who stutter say that stuttering interferes with their performance at work or at school. Nearly four out of 10 report being denied a job or promotion because of their stuttering. Stuttering interferes with the social and family life of nearly two-thirds of respondents. Eighty-one percent say they avoid speaking situations, and 69% say they feel embarrassed when people find out they stutter.
These negative effects of stuttering may be significantly reduced for people who participate in stuttering support activities such as local support groups, workshops, and conventions. These activities create a peer-counseling environment in which people can compare experiences, share information, and learn from one another. This emotional support and encouragement helps give people who stutter the motivation to keep communicating, fluent or not, in their daily lives.
Although all survey respondents were NSA members, less than half had attended a national convention, regional workshop, or local chapter meeting. Respondents who participated in these activities, compared with those who had not, reported significantly less interference with work and social life, avoided speaking situations less, and were less likely to feel embarrassed about their stuttering.
Findings from this preliminary survey establish the value of support group participation for at least some adults who stutter and provide the foundation for future research that more directly examines the experiences of people who stutter.
The NSA (800-We Stutter; http://www.westutter.org/ ) is a nonprofit organization that helps adults and children who stutter with support activities, educational programs, publications, and advocacy. Founded in 1977, it is the largest organization of its type, with more than 80 local support groups across the United States. The NSA is directed and staffed by people who stutter, parents of children who stutter, and SLPs.