Title

Fragile X Syndrome: An Occupation Centered Analysis

Graduation Date

5-2018

Document Type

Master's Thesis

Degree Name

Master of Science in Occupational Therapy

Department or Program

Occupational Therapy

Department or Program Chair

Julia Wilbarger, Ph.D., OTR/L

First Reader

Laura Greiss Hess, Ph.D., OTR/L

Second Reader

Susan Morris Ph.D., OTR/L

Abstract

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.

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