Marina Sarris

Date Published: April 22, 2025

At least half of autistic children have trouble sleeping, but studying those problems can be difficult. Imagine a family having to travel to a sleep lab where their autistic child – who craves routine and sameness – must spend the night. In a strange bed. In a strange room. With sensors stuck on their head and body.

What if autistic children could participate in sleep studies at home, and these studies could collect data that was at least as good as what is gathered in a specialized lab? That is the goal of a new project of the Simons Foundation Autism Research Initiative (SFARI). Researchers with the Simons Sleep Project created an advanced way to study sleep at home. They have also made their data available to scientists worldwide to increase research into sleep.

The research team, led by Ilan Dinstein, Ph.D., hopes that a better understanding of sleep problems will lead to effective treatments for autistic people.

Sending a Big Box of Sleep Devices to Families

For the project, Dinstein’s team collected a range of sleep data from 102 autistic adolescents and 98 of their siblings, all while they slept in their own homes. The youth were ages 10 to 17 and members of another Simons Foundation project, the SPARK autism study.

Researchers sent three different data collection devices to the youth’s families. “We got a big box full of equipment,” recalls Carrie Best, whose two sons took part in the sleep study. “The study team did a nice job of making sure everything was labeled and clear. They included a binder of instructions with pictures.”

Study participants wore two of the devices, a wristband and a headband. The Embrace Plus wristband measured heart rate, skin temperature, and movement during the day and night. The Dreem3 head band, which was only worn for sleep, measured electrical activity in the brain, just like EEG equipment in a sleep lab. EEG measurements show when a person is sleeping, and how deeply, among other things.

The third device, a Withings sleep mat, was tucked under the teen’s mattress. The mat records breathing, heart rate, and movement. This data showed when the youth went to bed and got up during the night.

Setting up the study equipment became part of the family’s nighttime routine, Best says. “Even though researchers weren’t in your house, I felt very connected to them if I needed advice on the equipment.” She got same-day responses to questions that she emailed to the research team.

The autistic youth used the devices for three weeks. Then their siblings, who do not have autism, used them for three weeks. The researchers wanted information about siblings because they share similar home factors that affect sleep. Those factors include exposure to light, noise, temperature, screen time, bedtime routines, and caffeine.

Families received a cell phone with an app that collected data from the devices. “All the data streamed through the cell phones to the Simons Foundation servers. This enabled us to collect a wide variety of data from participants in their home environments over multiple days,” says Dinstein, senior visiting research scientist at SFARI, and professor of psychology and cognitive and brain sciencesat Ben-Gurion University of the Negev in Israel.

A New Way of Studying Sleep

This is the first study to use the three devices together, and to collect information from each person over three weeks’ time, Dinstein says. This method had advantages over at-home sleep studies that only used one sleep monitoring device, as well as over studies at sleep labs that collect data from only one night.

“When you have so many recordings from an individual, you can see what the reliability of findings are and to what degree the sleep difficulties are repeating night after night,” Dinstein says.

The data from the three devices agreed with each other more often than any of the devices agreed with the information from questionnaires and diaries that parents filled out.¹ That suggests that the devices accurately measured sleep and wakefulness, he says.

At the end of the study, the families received a report about their children’s sleep. Carrie Best found the information surprising. “My kids slept less than I thought they did,” she says. Her 13-year-old son, who does not have autism, slept less than his 16-year-old brother on the spectrum, according to the devices.

Creating a Resource for Sleep Researchers

The Simons Sleep Project had a larger goal than collecting data for one study. The raw and processed data went into a Simons Foundation database that can be used by other researchers to study sleep. Because the youth participate in SPARK, information about their development, medical conditions, and genetics is also available to scientists for approved research. The youths’ identities are removed from the information.

To encourage more research, the project made the sleep data available to other scientists as soon as that data was checked for accuracy and organized. “It makes a lot more sense to open this up immediately so people can address many different questions in parallel,” Dinstein explains.

The Mysteries of Sleep

Sleep is an important part of overall health. Researchers do not know why sleep problems are three times more common in autistic children than they are in their typical classmates. At least half of autistic children have trouble falling or staying asleep.^2-3 From 69 to 87 percent of independent adults in SPARK report problems with sleep, according to studies.^4-5

“Sleep is kind of mysterious,” says Carrie Best, a SPARK member from Rhode Island. She knows from experience. Jude, her son with autism, slept poorly as a baby and young child. His doctors did not have much useful advice for how to reduce his insomnia, she recalls. When Jude didn’t sleep, she didn’t either. “There were no good answers,” she says.

Like the researchers, she hopes to learn more about the causes of sleep problems so that interventions can be found. “I would love to see interventions or therapies that are tested that can help people of all ages and could address sleep problems,” Best says. “Sleep problems take such a toll on people, not just the person experiencing the problem, but parents and siblings too in some cases. That just impacts quality of life for everyone.”

Early Findings of the Simons Sleep Project

Autistic adolescents in the Simons sleep study took an average of eight minutes longer to fall asleep than their siblings.¹ That supports previous research by Dinstein that suggests that autistic children are less sleepy at night, based on EEG tests.⁶

In the Simons study, the autistic youth got about the same total amount of sleep as their brothers and sisters. They also were similar to siblings in how often they awoke during the night.¹

Dinstein’s team found another similarity between autistic youth and their siblings. Those who had behavioral concerns were more likely to have problems falling asleep, whether they have autism or not. Behavioral concerns were measured by surveys that parents completed about ADHD symptoms, depression, sensory sensitivities, and daily functioning. Dinstein is interested in learning how ADHD and other conditions that autistic youth may have, as well as the medication they take, affect sleep.

The Simon Sleep Project’s methods could be used in studies with more participants. A large study using the project’s methods could help scientists measure different types of sleep problems, understand their effect on behavior and sensory sensitivities, and discover the relationship of a person’s genetics to sleep, Dinstein explains. This information could improve our understanding of some behavioral challenges that autistic youth experience and lead the way to tailored interventions, he says.

Dinstein hopes many other researchers will use the data to answer their own questions about sleep. “We were very focused on organizing the data in a way that would be easy for as many researchers as possible to use. In many ways, the success of the project is dependent on how many scientists end up using it,” he says.

Interested in joining SPARK? Here’s what you should know.

Photo credit: Ilan Dinstein.

References

1. Hacohen M. et al. bioRxiv (2025) Preprint
2. Solomon S. et al. J. Neurodev. Disord. 16, 29 (2024) PubMed
3. Reynolds A.M. et al. Pediatrics 143, e20180492 (2019) PubMed
4. Bishop L. et al. Autism Res. 16, 569-579 (2023) PubMed
5. Williams Z.J. and K.O. Gotham Autism Res. 15, 761-770 (2022) PubMed
6. Arazi A. et al. Sleep 43, zsz309 (2020) PubMed