Resilience in the face of fragile X syndrome

Abstract

In this article, we communicate transformative findings from a case study on the resilience of a young woman with fragile X syndrome (FXS), a genetic condition involving mental impairment and physical, emotional, and behavioral challenges. We explored the resilience of “Lucy,” a spirited 16-year-old North American, using informal interviews with her, formal interviews with significant adults in her life, and observations (visual and anecdotal) over 20 months. In reporting the information-rich case of Lucy, well supported by her ecology to rise above full-mutation FXS, we encourage a positive perspective of living with FXS. Although we recognize the limitations of a single case study, our findings offer tentative, process-oriented insights into resilience in contexts of genetic disability, previously unreported in conjunction with FXS. We concluded that the processes informing Lucy’s resilience were partly her responsibility and partly her social ecology’s, and comprised intrapersonal agency, unconditional positive acceptance and belonging, and support toward mastery.