FXS: Late Adolescence and Early Adulthood

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.

Grant Number: 5R01HD084563-09
NIH Institute/Center: NIH
Principal Investigator: NANCY BRADY