Primary complex motor stereotypies (p-CMS) are repetitive, rhythmic, and predictable involuntary movements which occur in typically developing individuals. To date, research has focused on observational data involving parents, leaving a lack of first-hand information about the effect of p-CMS on experiencers’ quality of life and wellbeing in adulthood. This phenomenological study, grounded in Bronfenbrenner’s ecological theory, explored lived experiences of six young adults, ages 21 to 29 years, who self-identified with p-CMS, through in-depth telephone and Zoom interviews. I aimed to answer how p-CMS affected participants in academic, work, and social settings, what meaning participants assigned to their p-CMS, and what participants wished family, doctors, and teachers would know about p-CMS as a social phenomenon. Data were analyzed through the application of Colaizzi’s method of data analysis in combination with open and axial coding. Participants viewed p-CMS as mostly positive and serving a definite purpose in terms of emotional and learning processing, while indicating that p-CMS manifestations needed less focus from caregivers and medical/mental health personnel and underlying comorbidities required more focus. Results of the study revealed unobservable firsthand experiences of p-CMS, the role of p-CMS in processing and regulation of emotional and academic information, and effect of comorbidities. Implications for positive social change include more informed insight by caregivers, family, medical personnel, and teachers into the role of p-CMS on experiencers’ lives and development of future treatments and approaches
