Problem Sleep in Children and Young Adults with Fragile X Syndrome with and without Autism Spectrum Disorder

Principal Investigator: Jennifer Accardo

This study will examine relationships between sleep difficulty and autism in boys and young men with full mutation Fragile X syndrome (FXS). This study will analyze retrospective cross-sectional data collected by anonymous survey on subjects with FXS whose parents participated in a nationwide survey.

Our sample will be limited to male subjects with full mutation FXS, age 4-18 years. Autism is defined by parent report of professional diagnosis. Problem sleep is defined by a survey item asking whether the child or young adult currently experiences sleep difficulties. Anxiety is defined by parent report of diagnosis or treatment for anxiety.,/p>

Logistic regression models will be used to examine associations between current sleep difficulty and factors including parent-reported autism diagnosis, anxiety, seizures, and quality of life among the full sample. A subset of subjects will be matched on anxiety had occurred and age within six months to compare the proportion of reported sleep problems between subjects with and without autism. We hypothesize that children and young adults with FXS and autism will have a higher proportion of sleep difficulties, which will also be more severe than in subjects without autism.

The information gained from this study will help evaluate whether children and young people with FXS may serve as a genetically homogeneous model in the study of sleep problems among children with autism. It will also contribute to the literature on whether autism is associated with increased sleep problems among children and young adults with intellectual disability.

The database is available to the primary investigator electronically. It contains no identifying information in terms of medical record number, date of birth, contact information, etc. to which participants could be linked. The survey was extended to families of children in foster care, and subjects in foster care will be excluded from analysis. Dr. Kaufmann has a data use agreement with the originator of the survey, Dr. Donald Bailey.