At 5:30 on a recent Sunday morning, Barb McCullen of Myerstown was up with her 9-year-old daughter, Ella. They hadn’t awakened early to get a head start on the day; Ella had yet to fall asleep from the night before. According to her mom, she was “still going strong.”
Ella has autism. Barb and her husband knew what they were getting into, as far as the sleep problems go. When they took Ella in as a 5-year-old foster child whom they later adopted, a prescription for clonidine — for sleep disturbances — came with her. “I knew her grandmother was on survival mode with her because of the sleep problems,” McCullen says.
The McCullens have two children with autism spectrum disorder (ASD) — Ella and a 6-year-old foster daughter. Both struggle with sleep issues, and the two have a loft bed in their parents’ room so that Barb and her husband can keep watch over their nighttime wanderings. While the younger girl’s sleep problems are less severe, Ella’s are chronic and disruptive. Most nights, she will awaken around 1:30 a.m. and want something, urgently. Because of her autism, she is unable to self-sooth, or be soothed, back to sleep.
“Ella will get up and start to spin and she’ll come up to me and say, ‘School IP. School IP. School IP,’ which means she wants her school iPad,” says McCullen. “Or she’ll say, ‘Fruit punch. Fruit punch. Fruit punch.”
McCullen explains that Ella just doesn’t seem to grasp when it’s nighttime. “We have all the lights out, but she wanders around like it’s daytime,” she says. “And with the fruit punch, she loves it. Over Thanksgiving, it was really cold, so I stored some fruit punch outside. So at 2 in the morning, she’s standing by the front door saying, ‘Fruit punch. Fruit punch.’ Finally at 4 a.m., I gave in and got some fruit punch for her.”
Whenever Ella does settle back down to sleep, it usually isn’t in her bed. She prefers the hardwood floor in the kitchen, in front of the heat register.
“She doesn’t even want a pillow or blanket. Don’t judge, but I bought her a dog bed, so at least she’d have something soft to lie on. It’s hard on the caregivers,” McCullen explains. Mom to eight and foster mom to two, she has four other children in addition to her two girls with ASD still living at home. “It’s hard on the rest of the kids.”
The silent majority
According to Autism Speaks, an advocacy and support group for those with autism and their families, as many as 80 percent of kids with ASD have sleep problems. For the neurotypical population, that percentage drops dramatically to less than 16 percent, reports the journal Sleep Disorders. Aside from the disruption it causes within families, nighttime sleep disturbances in children with ASD often result in a daytime increase in some of the challenging behaviors associated with autism.
For such a high percentage of children with ASD struggling to get an adequate amount of sleep, there hasn’t been much focus from the medical profession. The February 2016 issue of Pediatrics analyzed data from a children’s sleep habits questionnaire and found that while 71 percent of the parents surveyed identified a clinically significant sleep problem in their child with ASD, only 30 percent of those children received any sleep disorder diagnosis from their doctor. The reason, study authors opined, was that because of the “many needs of children with ASD, sleep concerns may be eclipsed by these other needs, especially in the limited time available at a clinician visit.” Parents, it seems, aren’t speaking up about the problem unless asked specifically. But help is available, and sleep studies aren’t typically required to get it.
Sam Al-Saadi, M.D., is a psychiatrist with UPMC Pinnacle who is board-certified in psychiatry and neurology and trained in sleep medicine. He also has a 6-year-old-daughter on the spectrum. He explains that children with ASD usually don’t come in for sleep studies unless there’s a concern about another underlying medical problem, like sleep apnea or seizure disorders (approximately 30 percent of kids with autism have epilepsy as well, although the type of epilepsy is not one that generally affects their sleep). When there’s no secondary medical cause, children with ASD average one hour less sleep each night than neurotypical kids; this is just the average — as McCullen experiences first-hand with Ella, there are some on the spectrum who experience far fewer hours.
Solutions for slumber
One of the first things parents reach for to help their children sleep is melatonin supplements. Melatonin is a naturally occurring hormone produced by our bodies that’s triggered by a reduction in light. As the hormone levels rise, we’re put into a state of ‘quiet wakefulness’ that helps promote sleep.
“We tell parents, reduce the light that last hour,” says Dr. Al-Saadi. When naturally occurring melatonin isn’t enough, parents may want to give their child over-the-counter supplements. And while he says that’s OK, Dr. Al-Saadi cautions that because melatonin isn’t FDA-regulated, “there’s no real proof that it’s what it says it is.” He further explains that melatonin adjusts the child’s circadian rhythm, and therefore after a few days it can lead to both falling asleep and waking earlier. He recommends it for short-term use only.
Dr. Al-Saadi says that to help kids with autism see lasting improvements in their sleep, parents should be open to prescription medications. “Taking a medicine is not negative,” he explains, adding that at some point, between 60 to 80 percent of kids with autism will be on some type of medication due to a secondary condition that becomes apparent later, “like anxiety.” And something like anxiety can cause sleep problems.
Providing the child with medicine that would reduce his anxiety would allow him to sleep better, Dr. Al-Saadi says. For other kids, ADHD could be the culprit. “If they’re jumping all over the place and they’re not shutting down to sleep, then perhaps a medication for hyperactivity is necessary for them at night to calm them,” he says.
The psychiatrist and sleep doctor also touches upon what McCullen has experienced with Ella. “When they’re younger, they’re really not in tune to their feelings as much,” says Dr. Al-Saadi. “They may wake up and not realize, ‘I should be tired.’ So they get up and do something” instead of going back to sleep. That tendency, he says, usually wanes as the child gets older.
Some parents realize that day will come. “I know these days are short in the overall scheme of things. They’re not going to grow up and still want to sleep in your bed,” says Kate Kalata of Carlisle. But understanding is not the same as accepting.
“Our sleep is completely dysfunctional,” she says. Her 5-year-old son, who has “high-functioning autism,” has shared his parents’ bed since August 2016. Kalata’s 3-month-old baby also sleeps in their room (but not their bed, she adds), while her 4-year-old son sleeps by himself in the room he’s supposed to share with his older brother.
Kalata is waiting to hear back from a sleep intervention program out of Pittsburgh that she learned about through an applied behavior analysis (ABA) program. “If there’s a service, and they can come to us, we want it. We want sleep,” she says.
Barb McCullen seems to dwell on her daughter’s floor-sleeping habit. She recounts a moment from the pilot episode of The Good Doctor, ABC’s new series about a young surgeon with autism, which shows Dr. Shaun Murphy sleeping on a floor without any pads or blankets.
“I called some of my friends and said, ‘Did you see that?’” She appreciates the way the show portrays the character, from what little she’s been able to watch of it. But back to Ella in the kitchen.
“Even our care worker says just leave her there,” says McCullen. “I’ll try to get her on that dog bed, but you don’t want to wake her.”
Before Ella, the McCullens only fostered teens. “When she was 5, she came to us, just for a few weeks. We were supposed to give her back. But we loved her, and couldn’t.”
Who needs sleep anyway?
Leslie Penkunas is the editor of Central Penn Parent.