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Fragile X Syndrome (FXS) is the most common form of inherited intellectual and developmental disability (IDD), and is a genetic model for autism spectrum disorder (ASD). According to the National Fragile X Foundation (NFXF, 2012), the disorder affects people of all ethnic backgrounds, with an estimate of 1 in 3,600 to 4,000 males and 1 in 4,000 to 6,000 females. A majority of males with FXS have an intellectual disability and up to 50-75% of males with FXS meet the diagnostic criteria for ASD (Roberts, 2016). According to the CDC, a national parent survey found that 46 percent of males and 16 percent of females with FXS have been diagnosed or treated for ASD (Bailey et al., 2008). Additionally, about 10 percent of children with ASD have another genetic and chromosomal disorder, such as FXS (Hall, Lightbody, & Reiss, 2008). Individuals living with FXS experience difficulties with social interaction, communication, sensory processing, and behavioral excesses across their lifespan (Brady et al., 2006). The purpose of our qualitative research is to examine the lived experiences of families who have been touched by FXS through an occupational therapy lens. The research seeks to understand families’ perspectives and occupations via their own voice, through semi-structured, recorded interviews. By analyzing parent routines, behaviors, thoughts, interactions, and contexts, occupational therapists can create individualized interventions and promote research to further the recognition of family values and goals they have for their child.
Laura Greiss Hess, Ph.D., OTRL
Department of Occupational Therapy, Dominican University of California
San Rafael, CA
FXS, occupation-based, fragile X syndrome, qualitative research analysis, family, occupational therapy, full mutation
Jacala, Raechel; Snyder, Holly; Lee, Amanda; and Harden, Katelyn, "Fragile X Syndrome: An Occupation Centered Analysis" (2017). Student Research Posters. 63.