SELF-DETERMINATION IN ADOLESCENTS AND ADULTS WITH FRAGILE X SYNDROME: THE RELATIONSHIP BETWEEN SELF-REPORT, PARENT PERCEPTIONS, AND INDIVIDUAL CHARACTERISTICS Public Deposited

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  • March 20, 2019
Creator
  • Villagomez, Adrienne
    • Affiliation: School of Education, School Psychology Graduate Program
Abstract
  • Self-determination is a characteristic that encompasses an individual’s abilities and attitudes to act as one’s own agent (Wehmeyer, 1992). Individuals with increased self-determination may act according to their beliefs and preferences more than individuals who are less self-determined, which in turn may lead to increased decision-making opportunities. Encouraging self-determination is a key strategy to reduce disparities faced by individuals with intellectual and developmental disabilities (I/DD; Shogren, Wehmeyer, Reese, & O’Hara, 2006). Although fragile X syndrome (FXS) is the most common known genetic cause of intellectual disability and autism spectrum disorder, no studies have examined factors associated with self-determination in this population. Eighty-six individuals with FXS (56 males and 30 females) between the ages of 12- and 40-years old and their parents completed questionnaires about self-determination. Individuals with FXS completed the Arc’s Self-Determination Scale (Adolescent and Adult versions, Wehmeyer, 1995); their parents completed the Self-Determination Questionnaire (Carter et al., 2013), which covered a range of skills and experiences and parental perceptions of importance. Data on parental perceptions of barriers and strategies to encourage self-determination were examined qualitatively. Cognitive ability (i.e., FSIQ), functional skills, autism symptoms, and anxiety data were also collected on individuals with FXS. Age, adaptive behavior, and social avoidance predicted scores on the autonomy domain of the self-report measure and gender predicted scores on the remaining three domains. Parent-reported self-determined behaviors were predicted by adaptive behavior. Most parents rated all self-determined behaviors as “very important” for their child. The strength of the relationship between self- and parent-report was significantly influenced by all child variables (e.g., ASD, FSIQ). Many parents identified emotional support, behavioral support, and providing opportunities as important areas of support for their child’s development of self-determination. In comparison, parents reported anxiety, self-efficacy, communication, and cognitive functioning as the most significant barriers to their child’s development of self-determination. Findings from the present study highlight the importance of considering functional skills in individuals with FXS in predicting and ultimately promoting the development of self-determination. These findings also underscore the need for parent-report as well as information on the role of family in the development of self-determination.
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  • In Copyright
Advisor
  • Ware, William
  • Evarrs, Sandra
  • Wheeler, Anne
  • Wasik, Barbara Hanna
  • Simeonsson, Rune
Degree
  • Doctor of Philosophy
Degree granting institution
  • University of North Carolina at Chapel Hill Graduate School
Graduation year
  • 2016
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