The concept of self-help or support groups for people who stutter is not new. In the United States the movement began thirty years ago in the mid 1960's. The growth of such groups both nationally and internationally would suggest that traditional modes of therapy alone do not meet the needs of many people who stutter. There has been a tendency in the past for there to be a somewhat adversarial relationship between these groups and the professional community. That relationship was fostered in part because many stutterers' harbored negative feelings of frustration and anger because "fluent" speech, or significantly improved speech, had not been attained and/or maintained through therapy. Some members of the professional community countered with the thought that the client was simply not willing to perform or follow through with the tasks necessary to achieve improved fluency . There was certainly some truth in each position and while some of those feelings continue to exist today the spirit of cooperation and mutual understanding between the consumer support group organizations and the profession of speech-language pathology is not only evident but welcomed. This unique forum is but one example.
The fact is that while support groups may supplement the speech therapy process survey data clearly indicate that support groups are viewed by their members as distinctly different from and serving purposes other than those provided by speech therapy.(Krauss and Reeves,, 1989). That is to say that support groups are not viewed as equal to or in competition with formal stuttering therapy. They are viewed as quite different.
What role then if any can a consumer based self-help/support group organization play in the outcomes of speech therapy? I believe there are both direct and indirect roles that can lead to more positive outcomes. They are to provide a base of support, a forum for practice and transfer, a tool to prepare individuals for therapy, a resource for training students, and a vehicle for educating the public.
Providing a Support System
It is my belief that developing or incorporating a support system must be included in any therapy for stuttering. That system begins with the establishment of a relationship of mutual trust and respect between client and clinician. However, I also believe that for sustained success that support must extend beyond the confines of a clinical setting. The support system can be composed of the therapist, family, spouse, siblings, best friend, teacher, etc. or a combination of those. However, even the most loving and best intentioned individuals lack the basic understanding of what it is like to live in a world that does not stutter and often has very little patience for those who do. It is unfortunate but I believe most would agree that a significant number of speech-language pathologists are ill equipped with the counseling skills or experience necessary to deal with many of the issues that people who stutter must confront. This is particularly true in chronic stuttering. Many of those issues are commonly confronted and discussed in support group meetings. In the survey referenced earlier when asked about the focus of meetings the most selected response was to "share feelings and experiences" along with "providing stutterers a non-threatening place to talk" and "to help people who stutter feel better about themselves" . By incorporating a self-help/support group into the treatment plan it offers the client an opportunity to address many issues surrounding stuttering that may enhance the outcome of therapy. In addition because the management of stuttering for most adults is a life long endeavor such organizations provide a long term base of support and encouragement.
Practice and Transfer
Support group meetings provide an excellent opportunity for individuals to practice skills learned in therapy. The non-threatening and nurturing atmosphere provides an ideal opportunity to extend treatment from the therapeutic setting. In addition by encouraging such practice the individual involved in therapy is not the only one who benefits. Others attending meetings benefit by being educated about a particular therapeutic philosophy as well as specific treatment techniques. The process of explaining to others the specifics of one's therapy is a powerful reinforcing tool and is a further benefit to the client.
One of the most critical and difficult phases of therapy is to transfer the progress gained in a therapeutic setting to real life or day to day situations. A major obstacle in transferring treatment beyond the privacy of a clinicians office is the act of disclosing oneself to others. By encouraging individuals to become active in a support group and to practice their newly developed skills the phase of transfer will have already begun. The group itself often becomes a motivating force to encourage the individual to expand their own level of comfort by discussing their stuttering with friends, family and co-workers. Practice and transfer are keys to the successful outcome of treatment and incorporating a support group into the treatment plan potentiates that success.
It has been said that timing is everything. Stuttering therapy is no different. Perhaps one of the most significant reasons for a poor outcome to any therapy is that the individual seeking treatment was not prepared to participate at the level necessary to change speech patterns as well as attitudes. This was certainly true in the case of the author. Many people come into a self-help/support group meeting either having never had therapy or having had no therapy for some time . They are neither looking for a therapist nor are they inclined to be interested in treatment at that moment. However, over a period of time they have the opportunity to come in contact with individuals who have had success from one form of therapy or another. Seeing the positive affect that the different therapies have had often prompts discussion about the various therapy models. Armed with the understanding and support that the group provides many become motivated to consider treatment again with a more realistic and more positive attitude. In short they have become educated and have seen and heard what it takes to be successful in formal therapy and are willing to try again or for the first time. If by participating in a support group an individual becomes educated and motivated the potential of a successful outcome to therapy will increase.
This not only applies to adult or chronic stutterers. It also applies to young children through the education, motivation, and support of their parents. In 1991 the National Stuttering Project held its first "Youth Day" for children who stutter and their parents in conjunction with the NSP annual convention. That program brought parents, children who stutter, professionals, and members of the self-help/support movement together in an unprecedented and unique forum. The effort to reach that population was enhanced in 1996 when " The Year of the Child Who Stutters " was launched as a joint effort by the NSP, ASHA, and the SFA. By combining efforts with professionals self-help/support organizations are playing a key role in educating parents and reinforcing the importance of early intervention , parental support, and seeking the services of a qualified stuttering therapist. If through self-help/ support organizations we can help present to the professional speech-language pathologist a more educated and motivated parent the outcomes in treating children have a significant potential for improving.
Consumers as Teachers
As mentioned previously many speech pathologists are ill equipped to manage stuttering. Much of this is due to a lack of knowledge and understanding of the disorder partially resulting from insufficient exposure to stuttering during training. Some educators have known for years the tremendous potential of incorporating adults who stutter into their teaching programs. With the incorporation of parents into the self-help movement this invaluable resource is also beginning to be used. By enlisting individual stutterers and/or parents to share their stories or conducting panel discussions these programs are providing students with invaluable information not available from any other source. This is particularly true in the wake of the lowering of academic standards in the training for the treatment of fluency disorders in the United States. Organizations of consumer based self-help/support groups are an untapped resource for teaching. Future outcomes of therapy can be enhanced by incorporating the valuable experience and willingness of the consumer to help teach students about the human side of stuttering.
One of the most important roles that self-help/support organizations have is to advocate for people who stutter and to educate the public. Stuttering has always been associated with a negative stereotype by the public. This stereotype has been partly responsible for many of the negative feelings that stutterers have about themselves. It has also led to erroneous negative attitudes many employers possess that lead to discrimination in the workplace. By educating society about stuttering self-help/support organizations help to create an environment that is perceptually as well as genuinely less hostile toward stutterers. A more positive outcome to treatment should be aided by removing the stigma associated with stuttering.
I believe that the role of self-help/support groups in determining the outcome of stuttering therapy can be significant. The key to that role is the realization that formal therapy and participation in a support group are viewed as distinctly different by people who stutter. Both are important to the successful long term management of this most perplexing of speech disorders.
It has been gratifying to participate in helping to bridge the gap between speech-language pathologists and consumer based self-help/support group organizations over the past few years. We have much to learn from and to teach one another. The foundation for the continued growth of the relationship will be mutual respect and understanding. International Stuttering Awareness Day is an important milestone because it is a world wide effort between consumers and professionals to work together to improve the lives of children and adults who stutter. A special thanks to Judy Kuster and Michael Sugarman for making this internet experience possible.
Krauss-Lehrman, Tricia and Reeves, Lee, Attitudes Toward Speech-Language Pathology and Support Groups: Results of a Survey of Members of The National Stuttering Project, Tejas, Vol.XV #1, 1989.