Date Revised: October 19, 2023
Even as a toddler, James slept poorly. Sometimes he would awaken in the night and try to leave the house or play with the stove. Once he took apart a chair with an Allen wrench and put the chair back together without the screws. His family discovered his handiwork when someone sat in the chair, and it collapsed.
Safety was not his parents’ only concern about his night-time awakenings and daytime sleepiness. They also worried about what his poor sleep would mean for his development, learning, and behavior. “Sleep is critical to our health and when your child isn’t able to sleep on the same cycle as the rest of the community, that can really impact the rest of their life,” says James’ mother, Erin.
James, who is now 10, is among the almost 40 percent of autistic children in the SPARK autism study who have sleep problems.1 A larger proportion of independent autistic adults in SPARK ─ from 69 to 87 percent ─ report problems with sleep.2-3
Studies have found a link between autism symptoms, learning ability, and poor sleep. Researchers are trying to figure out why sleep problems are more common in autistic people, and what role genetics might play. And they are increasingly using a relatively new tool that will allow them to study more people, with greater accuracy.
A “Wristwatch” That Measures Sleep and Wakefulness
One such study is underway with independent autistic adults in the SPARK study. As part of a SPARK Research Match study, participants wear actimetry devices that use sensors to measure motion. These devices, which look like wristwatches, measure sleep, wakefulness, physical activity, light, and temperature during the day and night. These devices are more objective than surveys that ask people to recall their sleep habits, says the study’s co-leader, Maja Bućan, Ph.D., professor of genetics and psychiatry at the University of Pennsylvania’s medical school.
Wearable devices may also be less challenging for research participants than polysomnography, an overnight sleep study that is used to diagnose sleep disorders, Bućan says.
Overnight studies, which often take place in clinics, usually require a person to be connected to devices that measure brain waves, oxygen level, heart rate, and breathing.
Autistic people who have sensory sensitivities, or who prefer routine, may have difficulty sleeping in a strange place with sensors and wires attached to their bodies.
An actimetry watch may not provide the same data that a sleep study in a clinic does. But it has the advantage of collecting data while a person is awake and asleep over several weeks, rather than just one night, she says.
Bućan and her team will combine information from participants’ actimetry watches, questionnaires they complete about autism-linked conditions, and their DNA. This is believed to be the first study to analyze genetics, autism traits, and sleep traits together. “This makes our study very different from other studies that are published,” she says.
Her team hopes to learn more about how genes influence autism and sleep, and whether autistic people with sleep problems have a different subtype of autism than autistic people who sleep well.
Some of the genes that cause autism have also been linked to sleep disorders, she says. “By using this genetic information, we are more likely, in the best-case scenario, to find the genetic basis for sleep disturbances in autism,” she says.
That could lead to better, more targeted treatments for sleep disorders in autistic people, she explains.
What Sleep Disorder Treatment Did for One Child With Autism
For James, the 10-year-old in SPARK, medication for his sleep disorder led to major improvements, his mother says. He takes two prescription pills along with melatonin, an over-the-counter supplement, Erin says. He now sleeps through the night more often and stays awake during school. He is less likely to take an afternoon nap. Always a good math student, James has made major improvements in reading, she says.
With better sleep, James is having fewer meltdowns, or intense emotional outbursts, Erin says. Youth on the autism spectrum are more likely to have problems with managing emotions than others. “He went from having multiple meltdowns a day ─ banging his head, crying, screaming, turning red in the face, and not being able to engage with us ─ to having one meltdown every week or two. It’s a huge change. It’s not just easier for the people around him, it means he’s not suffering so much.”
The family still has alarms on the doors and cameras that were installed to keep James safe when he was younger. But Erin no longer awakens at 4 a.m. to the sound of pots crashing on the kitchen floor. When James does wake up during the night, he will play a game on his iPad rather than wander.
Last year, James was diagnosed with sleep apnea, a potentially serious condition that occurs when someone’s breathing stops and starts during sleep. He is scheduled to have his enlarged tonsils and adenoids removed, a common treatment for sleep apnea in children, his mother says.
The Sleep-Autism Link
As Erin observes, sleep problems can affect a child’s ability to manage emotions during the day. But do emotion regulation problems and anxiety, both of which are more common in autism, also affect sleep? And how can treatment affect them?
“Poor sleep can exacerbate difficulties with emotion regulation that many autistic individuals grapple with,” explains Edward S. Brodkin, M.D., associate professor of psychiatry at the University of Pennsylvania’s medical school.
“This is a common experience for anyone, whether on the autism spectrum or not: if you don’t sleep well, you may feel more irritable or emotional the following day. On the other hand, therapies that improve sleep can have a downstream effect of improving emotion regulation, which may in turn increase the person’s capacity to navigate the stresses of daily life and social interactions,” says Brodkin, who is co-leading the SPARK sleep study with Bućan.
Anxiety is another culprit in poor sleep. “In addition, anxiety, which affects many people on the autism spectrum, can make falling asleep or staying asleep more difficult, so treatments aimed at reducing anxiety may in turn improve the quality and duration of sleep,” Brodkin says.
Bućan discusses “Sleep and Physical Activity Patterns in Autism” in a recorded webinar for SPARK. She hopes that eventually doctors will be able to use data from actimetry wristwatches to help people who have sleep problems and autism spectrum disorder (ASD). “One day the sleep and activity patterns collected by a wearable device will be an actionable part of the clinical care of an individual with ASD,” she says.
Interested in joining SPARK? Here’s what you should know.