Summary
(E K Baker, T W Frazier, J M Phillips, A Y Hardan, M Uljarević)
- 2025
- This study looked at sleep difficulties in rare genetic neurodevelopmental conditions.
- The researchers recruited through several patient advocacy organizations, including SYNGAP1, ADNP, CSNK2A1, GRIN2B, STXBP1, HIVEP2, SCN2A, and MED13L participants in Simons Searchlight.
- Caregivers completed two surveys: the Children’s Sleep Habits Questionnaire and the Neurobehavioral Evaluation Tool. They also filled out a 7-day sleep diary.
- Sleep issues were found in all the conditions studied. Participants in the SYNGAP1 group had the most disrupted sleep, as compared with the other genetic conditions, and the most problematic sleep areas were shorter time sleeping and a higher sleep anxiety.
- The researchers suggested that people with SYNGAP1-related disorder might have more sleep disruption due to seizure activity.
- Similar to other sleep research, the analysis found that emotion regulation challenges and depressive feelings were related to sleep initiation and maintenance issues. Emotional dysregulation likely makes it difficult for a child to fall asleep at night, but also to return to sleep on their own when they wake up during the night. Depressive feelings were also linked to feeling very sleepy in the morning and poor sleep quality.
- Separation anxiety and not liking change to routine and/or rituals (insistence on sameness) were the biggest predictors of bedtime resistance. Children with sleep anxiety might have insistence on sameness behaviors to minimize their fears associated with sleep.
- Anxiety and sensory sensitivities were also related to decreased sleep length, and they might contribute to insomnia symptoms.
- The researchers suggested that sleep interventions for people with rare neurodevelopmental disorders should include the sleep disorder, the behavior, and emotional factors. This type of comprehensive approach is more likely to improve the quality of life for the person and their family.
