Change in the Behavioral Phenotype of Adolescents and Adults with FXS: Role of the Family Environment
Legend: Figure 1 displays the significant age by time interaction for adaptive behavior in a sample of 147 individuals with fragile X syndrome. There was significant improvement in adaptive behavior over time for individuals in the sample who were adolescents at the start of the study but there was no significant change for individuals who were adults at the beginning of the study. On average those who were 14 years of age at the beginning of the study were gaining almost half a point on the adaptive behavior scale per year. Not displayed in the figure, being female and older age was associated with greater independence in adaptive behavior whereas having a co-occurring intellectual disability was associated with lower scores. Higher numbers of psychotropic and non-psychotropic medications were associated with lower levels of adaptive behavior. Between families, a higher level of warmth was associated with greater independence in adaptive behavior.
Citation: Smith, L. E., Hong, J., Greenberg, J. S., & Mailick, M. R. (2016). Change in the behavioral phenotype of adolescents and adults with FXS: Role of the family environment. Journal of Autism and Developmental Disorders, 46, 1824-1833.
Abstract: The present study examined trajectories of adaptive behavior, behavior problems, psychological symptoms, and autism symptoms in adolescents and adults with fragile X syndrome (n = 147) over a three-year period. Adaptive behavior significantly increased over time, particularly for adolescents, and the severity of behavior problems decreased over time. Family environmental factors predicted phenotypic variables net of gender, intellectual disability status, and medication use. Maternal warmth was associated with higher levels of adaptive behavior, lower levels of autism symptoms, and decreases in behavior problems over time. Maternal depressive symptoms and criticism were associated with higher levels of psychological symptoms. Implications for interventions are discussed.
About the Lab: The Lifespan Family Research program is dedicated to understanding the impact of having a child with a developmental disability on the family as well as the role of the family in supporting healthy development for individuals with disabilities such as autism spectrum disorders (ASDs) and fragile X syndrome (FXS). In my work I examine trajectories of development for adolescents and adults with disabilities and the contextual factors associated with positive outcomes. My research also centers on developing and evaluating intervention programming for youth and young adults with ASD. For example, with funding from NIMH, we are currently conducting a randomized waitlist control trial of a psychoeducation intervention for young adults with ASD and their families. Also, in partnership with colleagues at the University of North Carolina-Chapel Hill and San Diego State University, we are employing an implementation science framework to test a comprehensive treatment model for high school students with ASD. This study includes a sample of over 500 students from 60 high schools across the country (including 20 high schools in Wisconsin). Through these efforts, we seek to understand how to best support individuals with disabilities and their families during life course transitions.