Stuttering as Defined by Adults Who Stutter

Abstract

Purpose Numerous frameworks and definitions have sought to differentiate what behaviors and experiences should be considered as a part of stuttering. Nearly all of these efforts have been based on the perspectives and beliefs of conversational partners and listeners. This outside-in approach to defining stuttering lacks validation from people who live with the condition. Method In this study, 430 adults who stutter participated in a qualitative exploration of the term stuttering . Data were analyzed thematically to determine speakers' perspectives about moment of stuttering and the overall experience of stuttering in their lives. Results To adults who stutter, the term stuttering signifies a constellation of experiences beyond the observable speech disfluency behaviors that are typically defined as stuttering by listeners. Participants reported that the moment of stuttering often begins with a sensation of anticipation, feeling stuck, or losing control. This sensation may lead speakers to react in various ways, including affective, behavioral, and cognitive reactions that can become deeply ingrained as people deal with difficulties in saying what they want to say. These reactions can be associated with adverse impact on people's lives. This interrelated chain of events can be exacerbated by outside environmental factors, such as the reactions of listeners. Discussion Data from this survey provide novel evidence regarding what stuttering means to adults who stutter. These data are used to update the adaptation of the World Health Organization's International Classification of Functioning, Disability and Health as it applies to stuttering ( Yaruss & Quesal, 2004 ) to better account for the complex and individualized phenotype of stuttering and to develop a definition of the experience of stuttering that is based not only on the observations of listeners but also on the impact of stuttering on the lives of adults who stutter.

International expert perspectives on the principles and components of effective intervention for adults who stutter

“…Stuttering is, as Tichenor and Yaruss (2019: 1) note, an individualized ‘constellation of experiences’ and participants in this study concurred, highlighting the individuality of the experience of stuttering and the need for intervention to centrally reflect this. The necessity for individualization is known, having been previously documented in the clinical and educational literature, including professional clinical guidelines (RCSLT 2009) and educational texts (Manning 2018).…”

“…The necessity for individualization is known, having been previously documented in the clinical and educational literature, including professional clinical guidelines (RCSLT 2009) and educational texts (Manning 2018). Thus, our participants agree that adults who stutter arrive to intervention with a unique collection of behaviours, reactions and experiences of stuttering in their personal context (Tichenor and Yaruss 2019), and responding to these form the basis of an individualized and appropriate treatment plan. Further reinforcement for this focus was obvious in participants clearly not expressing preferences for particular therapeutic techniques.…”

The Communication Benefits of Participation in Camp Dream. Speak. Live.: An Extension and Replication

“…The idea that a speaker could be a strong communicator while also stuttering is out-of-sync with decades of clinical research, which considers communication effectiveness and fluency to be closely linked, and, in part or in whole, focuses on eliminating stuttered speech. Brayden's openness with regard to his stuttered speech coupled with the overall effectiveness of his communication is consistent with modern views that fluency is not required to lead a fulfilling life-a welcome concept for the estimated 78 million adolescents and adults who stutter worldwide who continue to suffer devastating psychosocial, [1][2][3] academic, 4 vocational, 5,6 and financial 7 consequences based on perceived communication skills.…”

Scientists, society, and stuttering

“…Adults who stutter are often underemployed and face stigma and discrimination in academic and occupational settings 7 . Despite the efforts to help others identify with people who stutter, 8,9 not being able to speak fluently is a struggle that only those who stutter truly understand. Therefore, as a scientist and a clinician who stutter, we believe if we want to confront this long‐ignored condition, we should start in our scientific and medical communities.…”