Adolescents Who Stutter: The Urgent Need for Support Groups (a Parent's Perspective)
About the presenter: Lee is the mother of an adolescent who stutters and a Speech Language Pathologist. She has served on the Board of Directors of the National Stuttering Project, Chaired the Youth Programs Committee, and organized and facilitated the Youth Day activities at the annual conventions. Most recently, Lee has co-founded FRIENDS, the Association for Young People Who Stutter. Caggiano has developed and facilitated workshops and conferences for children and adults who stutter, their families and clinicians. She has presented at NYSSHLA , ASHA and IFA conferences.
Adolescents who stutter: the urgent need for support groups (A Parent's Perspective)
by Lee Caggiano
New York, USA
My various roles in the stuttering community have strengthened my conviction of the enormous impact support groups can have on the lives of children and adolescents who stutter, and their families. As the mother of an adolescent who stutters I have been painfully aware of the need for support. As my son was growing up I realized I could not allow stuttering to hurt my son and it became necessary for me to search for help in minimizing the damage this disorder might have on our lives. I am grateful that the search led me to the National Stuttering Project. My families involvement with the NSP has provided me the opportunity to experience the changes participation in support groups can have on young people and their families. I have witnessed these changes through the years as I watched my son become more and more comfortable with himself. I credit my involvement with NSP for helping me find my way, from a very lonely and helpless time and place. I was able to see the incredible impact self-help/support groups can have on an adolescent once again, as I watched in awe at the tremendous change and growth in my son as he graduated from the Successful Stuttering Management Program. The compassion and support shown to and for each member in this program may well be the most powerful I have ever witnessed.
I know what a tremendous impact support groups can have on the lives of children who stutter and their families, and am deeply troubled that so many young people continue to live in isolation and shame. It is critical that we begin to provide all children with this support and sense of empowerment. It is this sense of urgency that created FRIENDS, the Association for Young People Who Stutter. At our first convention this past summer I was fortunate in having the opportunity to once again see and feel the effect of support on young children. Watching young children become comfortable with their stuttering, talking about stuttering, laughing about stuttering and sharing their feelings was inspirational. Children and parents left the FRIENDS convention with feelings of hope and empowerment. Similarly, at the NSP Youth Days I have experienced the impact meeting others who stutter can have on a young person. This becomes evident impact can be seen as young people slowly reach out to each other, as parents begin to openly share their feelings, and offer hope to each other. I have watched the lives of children and families change as they discover that they are not alone in coping with this often devastating disorder.
The significance and benefits of self-help/support groups has been well documented in the literature (Galinsky & Schopler, 1994 ; Goodman, 1991; Ramig, 1993a; Rollins, 1987), and are particularly beneficial to people who stutter (Krauss-Lehrman & Reeves, 1989 ; Ramig, 1993a). A search of the literature reveals a paucity of information regarding the efficacy of support groups for adults who stutter, and disturbingly no available research regarding the need for, and impact of, these groups on adolescents who stutter (AWS). Adolescence, which is typically characterized by increased peer pressure, need to conform (Conture & Guitar, 1993) and difficulty with self-esteem (Harper & Marshall, 1991) is especially troublesome for teens who stutter. Experiencing failure and self-doubt in situations perceived to be important to significant others, may also result in loss of confidence and lowered self-esteem during adolescence (Brooks, 1993). The evidence that support groups for people who stutter exist and continue to grow, suggests that traditional therapy is not meeting all the needs of individuals who stutter. Support groups must therefore fill this void in the lives of individuals who stutter (Cooper, 1987). However, since support groups do not exist for adolescents who stutter, the needs of this population are not being met.
Many adults who stutter experience the need to share and identify with others who stutter, in order to address issues specific to stuttering such as self-esteem and acceptance. These adults find self-help/support groups provide them with this opportunity. This population often experiences fear, isolation, frustration, and shame (Cooper, 1989 ; Krauss-Lehrman & Reeves, 1989 ; Ramig, 1993a), all which may be contributing factors to low self-esteem. Participation in self-help groups may increase self-esteem by providing emotional support, a sense of cohesiveness, peer interaction , a feeling of acceptance, and the opportunity to help others (Goodman, 1991 ; Rollins, 1987 ; Suarez de Balcazar, et al., 1989).
Although there is little research data available on the efficacy of support groups for individuals who stutter, those studies that have been conducted provide evidence of the positive influence these groups have on the lives of people who stutter. Krauss-Lehrman and Reeves (1989) provided support for the positive impact of these groups. A survey was distributed to members of the National Stuttering Project, and revealed the most important aspects of this support group were "sharing feelings, thoughts and experiences", followed by "giving stutterers a non-threatening place to talk", and "helping people who stutter feel better about themselves". The reason given for first attending a meeting, by the majority of respondents, was to meet others who stutter. Members of the National Stuttering Project reported that belonging to such a group provided them with support and acceptance, allowing them to realize they were not alone (Ramig, 1993a). Similar results were reported by members of Speak Easy, another self-help/support group. The subjects reported improved self-concepts, more self-acceptance and a decrease in anxiety since attending the support meetings (Ramig, 1993a).
SELF ESTEEM
Adolescents who stutter would clearly benefit from the increased self-esteem these groups reportedly provide for adults who stutter. There are several contributing factors to the difficulty adolescents who stutter have with self-esteem. Self-perception is one of the strongest influences of self-esteem and can be viewed as the difference between our ideal self (how we would like to be) compared to how we see ourselves (Brooks, 1993). Adolescence is the developmental period when we become most self critical (Lackovi'c-Grgin, & Dekovi'c,1990). Failure to accept oneself as a person who stutters is difficult for adults, and even more so for adolescents.
Another contributing factor to lowered self-esteem is the sense of failure, the belief that one does not meet their own standards or other people's standards, and is unable to cope with the self perceived failure or rejection (Eskilson, Wiley, Muehlbauer, & Dodder, 1986). Many adults who stutter report childhood feelings of failure due to the belief that if they "just tried hard enough" they would stop stuttering. The often unrealistic, and possibly unattainable goal of perfect fluency, encouraged by years of traditional speech therapy can result in the belief that one is not meeting other people's expectations (fluency), thus resulting in a sense of failure. The inability to cope with feelings of failure and rejection will increase the difficulties with self-esteem.
Self-esteem is also influenced by how an individual believes they are perceived by others (Lachovi'c-Grgin & Dekovi'c, 1990). Despite evidence that children who stutter are normal, well-adjusted and capable, and very similar to non-stuttering children (Huiliit & Wirtz, 1994 ; Ramig, 1993a), research has reported young people who stutter are perceived as displaying negative stereotypical behaviors by school administrators, teachers, special educators, university professors, clerks, and speech clinicians. These negative behaviors are perceived as insecurity, nervousness and shyness (Huiliit & Wirtz, 1994; Lass, Ruscello, Pannbacker, Schmitt, Kiser, Mussa, & Lockhart, 1994 ; Ramig, 1993a).
Parental attitudes may also impact the self-esteem of an adolescent who stutters. Starkweather discusses the "conspiracy of silence", as contributing to the sense of failure (Personal communication, October 16, 1995). Parents often do not discuss stuttering with their child, resulting in the child's belief that there is something terribly wrong with him/her (something no one will discuss with the child). Fortunately, many clinicians suggest that parents no longer continue this "conspiracy of silence", and encourage parents to discuss stuttering with their children (Ramig, 1993b). However, this critical advice comes too late for adults and adolescents who stutter. They have spent far too long believing their stuttering was something to be ashamed of, resulting in lowered self-esteem and for many, difficult and painful childhoods.
NEED OF SUPPORT
The information obtained from a study conducted in 1994 (Caggiano, unpublished) was consistent with previous research (Krauss-Lehrman & Reeves, 1989; Ramig, 1993a) and supports the hypotheses that 1) there is a need for additional support services for adolescents who stutter; and 2) support groups would have a positive impact on the self-esteem, consequently increasing the communicative ability of adolescents who stutter.
Results of this survey indicated 100% of the participants felt children/young people would benefit from support groups. All reported adolescents would benefit the most, however the children and parents reported that children 6 years and older should participate. The children reported meeting "friends that won't laugh at me", "helping other kids who stutter" and not "feeling so alone" as possible benefits. Parents indicated the benefits gained from support group participation might include receiving emotional support, meeting others who stutter and learning coping strategies to build self-confidence. The adults who belong to support groups also suggested that participation would be beneficial to adolescents providing a "chance to socialize without being stigmatized". In this environment " they won't have to go through the tough times alone", and might "help young people realize stuttering is not their fault". An additional benefit to be gained would be discovering that "it is O.K. to stutter".
Feelings of isolation have consistently been reported by children and adults who stutter, in this study and previous research. The results of this study indicated that subjects belonging to support groups reported knowing 9-10 people who stutter, contrasting with 1-2 people known to subjects not belonging to a support group. Clearly support groups provide members with the opportunity to feel less alone and different, which are the greatest concerns of the children in this study. Prior research regarding the benefits of groups supports this study's findings that support groups benefit participants by modeling behavior of others, sharing similar problems, providing emotional support and information, and a sense of helping others and universality. These benefits contribute to people feeling less alone (Goodman, 1991). The parents in this survey indicate participation in annual National Stuttering Project conventions has improved their children's self-image by reducing feelings of isolation and introducing successful adults who stutter, as role models. Psychologist Julius Segal considers one of the most important factors in determining self-esteem is the presence of at least one adult who shows respect and acceptance, and with whom the child can identify and gather strength (Brooks, 1993).
The descriptions of feelings towards stuttering indicate evidence for the need for adolescent support, and the positive impact support groups have on self-esteem, as evidenced by adult responses. The children in this study, none belonging to a support group (other than the three subjects who have participated in annual meetings), all expressed negative feelings. The adults report both positive and negative feelings. Whether this was due to maturity, or participation in support groups by all but seven adults, adolescents will obviously benefit from support during this difficult time.
Results indicated that adult subjects belonging to support groups reported perceive their speech therapy as successful, as opposed to non- participating subjects, who report speech therapy as unsuccessful. It was not the level of fluency attained, but the communicative comfort and ability that determines this positive rating. All subjects had previously received speech therapy and report varying levels of fluency. The difference between these two groups appears to participation in support groups. Although the sample of adults not belonging to support groups was small, this was a significant finding. These findings must be considered in speech therapy treatment plans for adolescents who stutter. Treatment can be considered effective when it results in a child who stutters exhibiting the ability to communicate easily "whenever, wherever, and to whom ever he or she wants" (Conture & Guitar, 1993). The implications of the results of this study suggest that although there may be no significant impact on fluency, support group participation has a positive influence on improving the communicative ability of people who stutter. The goal of fluency is debatable however, the ability to communicate effectively can have a profound effect on the quality of one's life. "The greatest tragedy of stuttering is that it forces people to be other than themselves" (Starkweather, W. personal communication, October 30, 1995). Support groups improve the ability of people who stutter to communicate comfortably, thus freeing them to be themselves. Many respondents in this study included personal experiences in their surveys, expressing gratitude to this writer for researching this topic, and encouragement to continue. "I spent most of my life feeling like I was the only one who stuttered, like there was something terribly wrong with me. It is a shame I had to wait until I was 30 years old to feel the freedom in knowing I was not alone" (Butcher, S. personal communication, October 11, 1995). "You can't imagine what a feeling of profound relief it is to finally meet and talk to others with the same problems. I only wish there had been something like this when I was younger" (Schutter, V. personal communication, Oct.10, 1995).
CONCLUSION
In conclusion, this writer is hopeful that the results of this research establish the urgent need for support services for adolescents who stutter. Stuttering can be a profoundly devastating disorder, consequently, support at all ages can be beneficial. As evidenced by the results of this study, the population of adolescents who stutter will clearly benefit from such support. While conducting this research it became very clear to this writer that although many of the adults in this study have gone through much counseling and personal growth to cope with their stuttering, the pain and fear still remain. It is not clear whether providing support at an earlier age might have prevented the severity of these emotions. However this study provides evidence that support during adolescence is not only necessary to help them cope, but has the potential to prevent or minimize the damaging effect stuttering has had on the lives of those who stutter. This is a call for immediate action. The implications point toward the urgent need of providing support for adolescents who stutter, rather than allowing the pain and fear of stuttering to continue to haunt them into adulthood.
References
Brooks, R. (1992). Self-esteem during the school years. Pediatric Clinincs of North America, 537, 549.
Conture, E., & Guitar, B. (1993). Evaluating efficacy of treatment of stuttering: School age children. Journal of Fluency Disorders, 18, 253-287.
Cooper, E. (1987). The chronic pervasive stuttering syndrome: Incurable stuttering. Journal of Fluency Disorders, 12, 384-388.
Eskilson, A., Wiley, M., Muehlbauer,G., & Dodder, L. (1986). Parental pressure, self-esteem and adolescent reported deviance : Bending the twig too far. Adolescence, XXI, 417-422.
Galinsky, M., & Schopler, J. (1994). Negative experiences in supoort groups. Social Work in Health Care, 20, 77-95.
Goodman, C. (1991). Perceived social support for caregiving: Measuring the benefit of self-help/support group participation. Journal of Gerontological Social Work, 16, 163-172.
Harper, J., & Marshall, E. (1991). Adolescent problems and their relationship to self-esteem. Adolescence, XXVI, 799-807.
Huilit, L., & Wirtz, L. (1994). The association of attitudes towards stuttering with selected variables. Journal of Fluency Disorders, 19, 247-267.
Krauss-Lehrman, T., & Reeves, L. (1989). Attitudes towards speech-language pathology and support groups: Results of a survey of members of the National Stuttering Project. Texas Journal of Audiology and Speech Pathology, XV, 22-25.
Lackovic-Grgin, K., & Dekovic, M. (1990). The contributions of significant others to adolescents' self-esteem. Adolescence, XXV, 839.
Lass, N., Ruscello, D., Pannbacker, M., Schmitt,J., Kiser, A., Mussa, A., & Lockhart, P. (1994). School administrators perceptions of people who stutter. Language, Speech and Hearing Services in Schools, 25, 90-93.
Ramig, P. (1993a). The impact of self-help groups on persons who stutter: A call for research. Journal of Fluency Disorders, 18, 351-361.
Ramig, P. (1993b). Parent-clinician-child partnerships in the therapeutic process of the preschool- and elementary- aged child who stutters. Seminars in Speech and Language, 14, 226-236.
Rollins, J. (1987). Self-help groups for parents. Pediatric Nursing, 13, 403,408.
Suarez de Balcazar, Y., Seekins, T., Paine, A., Fawcett, S., & Mathews, R. (1989). Self-help and social support groups for people with disabilities: A descriptive report. Rehabilitiation Counseling Bulletin, 33, 151-156.
September 22, 1998
