Stuttering as Defined by Adults Who Stutter.

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 . 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 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.