FXS: Late Adolescence and Early Adulthood

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FXS: Late Adolescence and Early Adulthood This application requests continued support for longitudinal research studying the bidirectional influences exerted between children with FXS and their mothers. During the proposed period, the children will transition to young adulthood, and we will examine how variables we have repeatedly measured since age 2 impact living arrangements, employment status, and quality of life as young adults. We will also continue to follow their premutation mothers, many of whom are facing transitions associated with their own aging process and the uncertainties of having a child exit schooling and potentially leave home. Our research has demonstrated that the FXS phenotype is driven in part by the dynamic interaction of biology, behavior, and the environment over time. Consequently, the early adulthood period represents an opportunity to investigate the impact of variables that have been influencing both the child and mother since early childhood (i.e., sex, autism symptomology, maternal responsivity, language, cognition), and new variables including transition planning and the family environment that may impact outcomes in adulthood. This project continues to be led by Drs. Nancy Brady and Steve Warren in collaboration with Drs. Kandace Fleming and Shelley Bredin-Oja at the University of Kansas. We propose to collect two additional data points per dyad from late adolescence to early adulthood. Among the strengths of our study is the retention from early childhood of 46 of the original 55 dyads (84% retention rate). Further, we plan to strengthen the generalizability of findings from the transition period by adding 12 new participants. We propose two aims. Aim 1: To what extent do early predictors (i.e., parenting behaviors, communication, problem behavior, autism symptomology, biomarkers) and later predictors (i.e., quality of transition plan, parental expectations and perceptions, SES) influence employment, communication, adaptive behavior, quality of life, independence, and self-determination of adolescents transitioning to adulthood? Aim 2: To what extent do early and later predictors (i.e., child behaviors and communication, and maternal mental health and biomarkers) influence mothers' executive functioning, word retrieval, perceived anxiety, depression and caregiver burden, partner support, satisfaction with IEP transition plans, and community support during transition to adulthood? Together these aims will provide empirical insights into a largely unstudied age period. The longitudinal nature of our study, with up to 10 data points per dyad, will be used to identify predictors of outcomes as well as possible treatment targets and timing for interventions on these targets for those who have poorer outcomes.