Exploring the Adult Life of Men and Women With Fragile X Syndrome: Results From a National Survey Sigan L. Hartley, Marsha Mailick Seltzer, Melissa Raspa, Murrey Olmstead, Ellen Bishop, and Donald B. Bailey, Jr. Author information Copyright and License information Disclaimer The publisher's final edited version of this article is available at Am J Intellect Dev Disabil See other articles in PMC that cite the published article. Go to: Abstract Using data from a national family survey, the authors describe the adult lives (i.e., residence, employment, level of assistance needed with everyday life, friendships, and leisure activities) of 328 adults with the full mutation of the FMR1 gene and identify characteristics related to independence in these domains. Level of functional skills was the strongest predictor of independence in adult life for men, whereas ability to interact appropriately was the strongest predictor for women. Co-occurring mental health conditions influenced independence in adult life for men and women, in particular, autism spectrum disorders for men and affect problems for women. Services for adults with fragile X syndrome should not only target functional skills but interpersonal skills and co-occurring mental health conditions.
Fragile X syndrome is a neurodevelopmental disorder characterized by an expansion to 200 or more repetitions of the CGG sequence of nucleotides composing the 5' untranslated region of the FMR1 gene located on the X chromosome (Brown, 2002). Individuals who have 55 to 200 CGG repeats in the FMR1 gene are said to carry the premutation. The full mutation of the FMR1 gene is the leading inherited cause of intellectual disability, and researchers estimate that fragile X syndrome associated with intellectual disability occurs in 1 in 3,600 individuals in the general population (Crawford, Acuna, & Sherman, 2001; Hagerman et al., 2009). Researchers have described the fragile X syndrome profile of cognitive and communication impairments and co-occurring conditions, including attention problems, hyperactivity, anxiety, and autistic symptoms (e.g., Abbeduto, Brady, & Kover, 2007; Bailey, Raspa, Olmsted, & Holiday, 2008; Cornish, Turk, & Hagerman, 2008; Hagerman & Hagerman, 2002). Most of these studies focused on children or adolescents. Very little research has examined what this profile means for the everyday lives of adults with fragile X syndrome.
There is no single definition of what constitutes success in adult life for individuals with intellectual disability. However, several common goals for adult life have been articulated by organizations, government agencies, and in legislation (Luckasson et al., 2002; Rehabilitation Act Amendment of 1998 [P.L. 105–200]; U.S. Department of Health and Human Services, 2000; World Health Organization [WHO], 2001). These goals include living independently, gaining employment, developing proficiency in activities of everyday life, developing friendships, and participating in a variety of leisure activities. Virtually nothing is known about the extent to which men and women with the full mutation of the FMR1 gene are able to reach these levels of independence in adult life. In this study, we explored the adult life of men and women with the full mutation of the FMR1 gene, as reported by parents in a large national survey. In an additional goal, we focused on identifying factors related to achieving independence in the adult life of men and women with fragile X syndrome. This information is critical for understanding the needs of adults with fragile X syndrome and tailoring services and public policy to enhance their quality of life.
