This study examined trajectories of daily living skills, behavior problems, body mass index (BMI), and health conditions spanning nearly a decade in adolescents and adults with fragile X syndrome (N = 134; age range at study end = 19–49 years), examining influences of sex and autism spectrum disorder (ASD) symptoms. Hierarchical linear modeling revealed early increases in daily living skills, with decreases at older ages. Behavior problems became less severe over time, with some increases at older ages. Individuals gained weight and had increasing health problems over time. Fewer ASD symptoms were associated with greater daily living skills and fewer behavior problems at study start. This study offers some of the first prospective quantitative analyses of behavioral and health life course trajectories in FXS.
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This work was supported by the National Institute of Child Health and Human Development to the IDDRC at the University of North Carolina (P30 HD003100-S1) to support a Fragile X Research Center at three additional sites (Research Triangle Institute International, the University of Wisconsin-Madison and University of Kansas). The present analysis was based on data collected by the UW-Madison Waisman Center site (M. Mailick, PI). Additional support was provided by the National Institute of Child Health and Human Development (T32 HD07489 and R01 HD082110, M. Mailick, PI) and the Waisman Center IDDRC (P30 HD03352 and U54 HD090256, A. Messing, PI).
Conflict of interest
All authors declare that they have no conflicts of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Usher, L.V., DaWalt, L.S., Hong, J. et al. Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade. J Autism Dev Disord 50, 2779–2792 (2020). https://doi.org/10.1007/s10803-020-04367-w
- Fragile X syndrome
- Behavioral phenotype
- Health phenotype