Caregiver reports of sleep problems on a convenience sample of children with fragile X syndrome.
Half of kids with fragile X have clinical sleep problems—screen all, treat early, and expect parent benefits too.
01Research in Context
What this study did
MacDonald et al. (2009) asked 62 parents of kids with fragile X to fill out a sleep survey. They used the Children’s Sleep Habits Questionnaire, a quick checklist you can finish in 10 minutes.
The team wanted to know how many kids had ‘clinical-level’ sleep trouble. They did not test any treatment; they just counted the problems.
What they found
Almost half of the kids (a large share) scored above the cut-off for serious sleep problems. Bedtime resistance and night wakings were the top complaints.
Age, IQ, or use of sleep meds did not predict who struggled. In short, sleep trouble was everywhere in this sample.
How this fits with other research
Hayse et al. (2025) later used the same caregiver-survey style in autism families. They added parent-fatigue data and showed that variable child sleep hurts parents too. The 2009 fragile X snapshot now feels like step one of a bigger story.
Capelli et al. (2025) looked at autistic people across the lifespan with wrist sensors, not surveys. They still found broken sleep, proving the survey method wasn’t exaggerating the problem.
Tilford et al. (2015) went a step further and treated sleep in autism. Child sleep gains also boosted caregiver quality of life, giving the 2009 numbers real-world value.
Why it matters
If you serve kids with fragile X, treat sleep as a core symptom, not a side note. Screen every intake with the same 10-item parent survey. When scores are high, move straight to treatment—melatonin or brief bedtime plans—because later autism work shows both you and the parent will feel the payoff within weeks.
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02At a glance
03Original abstract
Caregivers reported on sleep in a convenience sample of 90 children with fragile X syndrome utilizing a standardized assessment tool, the Children's Sleep Habits Questionnaire (CSHQ), and a 14-day sleep diary. CSHQ data indicated that 47% of participants had sleep problems at a level that suggested referral and further evaluation. Sleep diary data indicated high rates of several sleep problems. These problems did not appear to follow a typical developmental trajectory and were not related to gender or demographic variables. Nineteen percent of the sample was currently receiving medication to improve sleep; however, there were no significant differences between those receiving medications and those not receiving medications.
American journal on intellectual and developmental disabilities, 2009 · doi:10.1352/1944-7588-114.6.383