For children with autism, sleep is the essential ingredient in any treatment plan

When Dr. Shafali Jeste first started seeing children through UCLA’s Developmental Neurogenetics Clinic, she expected most visits to focus on the medical management of epilepsy, attention deficit-hyperactivity disorder, or behavioral challenges.

Jeste, a behavioral child neurologist, specializes in children with rare genetic variants and syndromes associated with autism spectrum disorder. Almost half of her patients need medication for seizures, mood disturbances or behavioral outbursts.

Yet the issue she most often must manage in these patients is insomnia – a seemingly mild problem, but one that can have a significant domino effect in these families' lives.

“Difficulty falling asleep or staying asleep disrupts the well-being of not only the child, but the entire family,” said Jeste, an associate professor in psychiatry and neurology at UCLA. “Families come to the clinic exhausted and somewhat desperate for relief.”

Up to 80 percent of children with autism have insomnia, which exacerbates the symptoms a child is already experiencing. Insomnia is associated with greater cognitive and social communication impairment, reduced attention, irritability, impulsivity, challenging behaviors, and anxiety.

The good news is insomnia can be addressed through multiple strategies. Treatments can be tailored to the genetic syndromes underlying each child’s sleep problems. For example, a child with autism due to dup15q syndrome may wake up throughout the night because of seizures. A child whose autism stems from fragile X syndrome may have difficulty falling asleep because of anxiety. Some children with autism caused by a mutation in the CHD8 gene may have insomnia for days at a time.

Jeste often provides the following advice to families about insomnia.

1) Keep a sleep diary. Log the child’s bedtime each night, the time the child actually fell asleep, and the timing and duration of any nighttime awakenings. This helps Jeste identify triggers for insomnia and track the effectiveness of interventions.

2) Modify nighttime routines. Jeste works with parents to develop a more consistent sleep routine. The child’s evening exposure to light and electronic screens may need to be tweaked. Eliminating bedtime hunger or gastrointestinal distress may be an important piece of the puzzle.

3) Consider modifying medications. Certain medications, such as antiepileptic drugs, stimulants or mood stabilizers, can disrupt sleep. Jeste may modify the child’s medication regimen, particularly the dose or timing of administration.

4) Try melatonin. Melatonin is a hormone naturally released by the brain to cue the onset of sleep. It has been shown in clinical trials to reduce the time needed to fall asleep.

If melatonin is not the right solution, Jeste considers a class of drugs known as alpha agonists, commonly used to treat high blood pressure. She starts with a low dose and monitors children carefully for daytime sleepiness or irritability. These medications have been shown to reduce nighttime awakenings.

“We all have experienced the ill effects of a poor night’s sleep. Imagine the impact that chronic sleep problems can have on the well-being of a child with autism, particularly a child with an underlying genetic syndrome,” Jeste says. “With better screening and therapeutic trials, we can help children and their families feel more rested.”

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