The Changing of the Clock

As a child, I never struggled with Daylight Savings time, because I either prepared for it by my family, or I just never noticed it. Nonetheless, in recent years, it has been harder and harder to overcome the change, yet I look forward to the time change in the spring, as it brings forward a sense of the mood eventually getting better.

For years growing up the Daylight Savings time began on the First Weekend in April and ended the last weekend in April. This occured during my youth, and it occuring on the weekend, hardly had any issue that I can easily recall, other than being up late.

By the Energy Policy Act of 2005, daylight saving time (DST) was extended in the United States beginning in 2007. As from that year, DST begins on the second Sunday of March and ends on the first Sunday of November. In years when April 1 falls on Monday through Wednesday, these changes result in a DST period that is five weeks longer; in all other years the DST period is instead four weeks longer.

This has been a struggle, as has been many in the autism community. Growing up, I have had the pleasure of visiting the Amish community in the adjoining county, and they elect not to observe daylight savings time, this confused me, but being mostly in our own car, and this was a house-by-house basis, it didnt seem as hard. One trip I made with my dad and his friend to a horse sale during Hurricane Ivan in 2004 did confuse me as it was in the State of Indiana, and at that time not all counties did not observe daylight savings time, and the county we were in did not because of the Amish population. I did not sleep well, and it was a misreable trip as a result. The following year the Indiana legisalture absolved this practice, and now the States of Hawaii and some parts of Arizona are the remaining two that follow this practice.

I have heard of legislation of Pennsylvania and other adjoining states such as Ohio and others attempting to abolish this practice. I would be happy if this were to occur. I personally feel that I suffer greatly from Seasonal Affective Disorder (SAD) due to the simple fact that I struggle emotionally during the standard months of missing daylight and the time changes. In the past few weeks I have been elated to be heading out to work in the daylight to not only have the clocks changed and yet again starting my day in darkness.

As I do look forward to the time changes as our local library has a book sale and a soup/chili walk. I do struggle after the change as I lack sleep in the fall and get too much in the spring. In the course of the past 24 hours, I have slept 13 of them, and now I do not feel like sleeping but I will do give it a college try. The thought processes running through my head make it difficult, but with medication, I am able to catch some sleep but oftentimes not enough.

All in all, I appreciate that extra hour in the fall, but the SAD symptoms do kill me so because I cant get out as much as I like during the week. By the time I get home from work I often in the colder months have less than a few hours to do something out of doors, or go somewhere on my own. The weather in winter, while better isnt all that warm although the weather is looking to be better with the appearance of birds this week.

I do like the spring change because of the things restarting, the ability to go walking, longer days, the tourist season of the mountains, and so forth. I just don’t like missing out by continious sleeping for hours on end to catch up.

Wide awake: Why children with autism struggle with sleep

Bramli was giving the stink eye to the grown-ups in her room, shooting resentful glances their way. Around 7:30 p.m. on a warm June evening, daylight was fading outside her home in Morgan Hill, California. A 5-year-old with curly brown hair, Bramli was dressed in pink-and-green pajamas and rigged from head to toe with more than 20 sensors. Crowning her head was a snug black spandex cap studded with electrodes connected to black wires that bunched together and ran down her back.

The girl was about to undergo an evaluation that would track her brainwaves, eye movements, heart, muscle activity and breathing as she slept. But Bramli, who has severe autism and is nonverbal, is an energetic, trampoline-loving whirlwind who doesn’t often sit still for long. Just putting all the monitoring equipment on her was no small feat.

Bramli wriggled, whimpered, moaned and sobbed as two Stanford University researchers gently cajoled her through the hook-up process. The girl’s mother, Haley Bennett, went all out to distract her with treats that were normally off limits after dinner: lollipops, soda and play time on the Nintendo and mini iPad.

Eventually, the girl quieted, sulking on her bed as she watched YouTube music videos. “None of us like to have our children be uncomfortable for any reason,” Bennett says. “But at the same time, when you’re looking at a life of never sleeping, day in and day out, it’s worth it in the end.”

It was worth it to Bennett and her husband if it could possibly bring some peace to their evenings. Their brood of four includes Bramli and 7-year-old Ryker, who also has autism. Each night, it takes hours for the two to fall asleep. Bramli, for example, often gets out of bed and climbs about in her closet, and her parents have to tuck her back in six or eight times before she finally goes down sometime between 10:30 p.m. and midnight.

With sleep disturbances afflicting at least half of children with autism, such bedtime horror stories are common in households such as the Bennetts’. “It’s very, very disruptive to the family,” says Ruth O’Hara, associate professor of psychiatry and behavioral science at Stanford University in California.

Wired for bedtime: Haley Bennett distracts her daughter Bramli with treats while researchers attach sensors to monitor the girl during sleep.

Bramli’s overnight assessment is part of a study that O’Hara is leading to understand why so many of these children have so much trouble sleeping. Sleep deprivation isn’t merely unpleasant, O’Hara points out: Increasingly, researchers are recognizing that sleep is critical for brain development and health. “Sleep disturbance impacts cognition, it impacts mood, and it impacts behavior,” she says — domains that are also affected by autism. By improving sleep, symptoms in these areas may also improve.

It’s unclear exactly why or how sleep is derailed more often in people with autism than in the general population, but a few theories have begun to emerge. One school of thought blames malfunctions in the body’s 24-hour biological ‘clock’ — called the circadian rhythm — perhaps due to dysregulation of the hormone melatonin, which is involved in controlling the sleep-wake cycle. Poor slumber is known to arise from any number of other causes, too: medication side effects, too much stimulation at bedtime or medical disorders ranging from anxiety and epilepsy to restless legs syndrome and gastrointestinal problems. O’Hara’s work suggests that problems with breathing during sleep could also be the culprit in many cases.

This nascent body of research hasn’t yet coalesced into a coherent picture of why sleep is such a struggle in autism, but some studies are pointing to a few solutions that may help families like the Bennetts rest a little easier.

“Sleep disturbance impacts cognition, it impacts mood, and it impacts behavior.” Stanford University psychologist Ruth O’Hara.

Wide awake:

Sleep troubles have long taken a back seat in autism studies, not least because doctors and parents have their hands full addressing other pressing priorities. As a result, just about all anyone can say with certainty is that sleep problems are rife among people with autism, and that it’s a complicated biological puzzle to solve.

In the 1990s, Australian psychologist Amanda Richdale found that 44 to 83 percent of children on the spectrum have some kind of difficulty with slumber, based on parent reports. Since then, a growing number of studies using increasingly sophisticated objective methods — including video recordings and FitBit-like wristwatches that track movements during sleep — have confirmed the high prevalence of sleep disruptions in this population.

What they’ve found is that children on the spectrum most commonly struggle with insomnia that delays the onset of sleep. They also get less rest overall than do typically developing children, and frequently awaken during the wee hours, roiling the household. “I still remember the mother of a 19-year-old telling me that her daughter would wake for long periods of time at night, just lying in bed singing to herself,” says Richdale, associate professor of psychology at La Trobe University in Melbourne, Australia.

Also now evident is that sleepless nights can take a toll on autism symptoms. “Children with autism who have compromised sleep are at greater risk for poor daytime behavior,” Richdale says. Poor sleep exacerbates some of the classic difficulties of autism, such as being easily excitable, prone to repetitive behaviors and having trouble with social interactions, communication and attention. Chronic lack of shut-eye can intensify stress and anxiety in fatigued mothers and fathers, too, which may in turn affect their parenting and interactions with their children.

More recently, an intriguing finding that children with autism might have less rapid-eye movement (REM) sleep has added to general concerns that a lack of proper slumber may worsen cognitive functioning in people with the disorder. The REM phase, when most dreaming occurs, is thought to be key for memory and learning. Other scientists have begun exploring factors that might cause individuals on the spectrum to stay awake, ranging from psychological issues such as anxiety to a core neurobiological dysfunction in the circadian rhythm.

For the Bennett household, the cycle of sleeplessness and stress is all too familiar. Bramli “has dark circles under her eyes all the time,” says her weary mother, who herself suffers when her children can’t sleep. Bennett has had pneumonia three times this year, she says. “I get sick a lot more than I used to, just because I’m run-down.”

When Bramli first underwent testing in the Stanford study in October 2014, the researchers found one cause of her troubles: sleep apnea, a condition in which breathing repeatedly stops for seconds at a time throughout the night, triggering unconscious ‘micro-arousals’ as the sleeper briefly gasps awake. The breathing disruptions can result from a physical blockage of the upper airway by soft tissues, such as the tonsils and adenoids, or from a brain glitch. Partial airway closures can also cause shallow breathing, or hypopnea, which also can interrupt sleep.

According to the data, Bramli had 15 hypopnea and apnea episodes and 63 micro-arousals in just one night. Although it’s normal for sleepers to experience some arousals, the girl’s readings raised enough of a red flag for O’Hara to refer her to the Stanford sleep clinic. Bramli later had surgery to remove her tonsils, which made a big difference. The girl has been sleeping more deeply and is able to make it through the days with less crying. She is less manic, with more stable levels of energy, her mother says. But getting her to actually fall asleep is still a challenge, so the research team went back to the family’s home in June to see if any other issues might come to light.

That June night, after plugging all the sensor wires into a small portable computer that would record the data, the researchers left. It wasn’t until nearly three hours later that Bramli finally dropped into solid slumber, sleeping until 7:45 the next morning.


Home truth:

The Stanford researchers used an ambulatory version of the gold-standard objective technique for sleep studies, polysomnography. This is a laboratory procedure that records the brain’s electrical signals as a person cycles through different phases of slumber, such as REM sleep, and it reveals any abnormalities in this pattern, or ‘architecture,’ of sleep.

Usually, polysomnography requires the participant to spend the night sleeping in the lab, wired with 21 electrodes stuck onto the scalp, legs and chest. For many children with autism who may be sensitive to unfamiliar people, environments and tactile sensations, that has been a nonstarter.

So O’Hara, working with sleep medicine specialist Michelle Primeau and other colleagues, improvised. The researchers used standard ambulatory equipment to bring the polysomnography method into a child’s bedroom, and devised a ‘systematic desensitization’ protocol to help get youngsters on the spectrum comfortable with the testing process.

They begin with preliminary home visits, bringing used or broken versions of the black spandex cap (with its embedded scalp electrodes), leg electrodes and other sensors so that the child can become familiar with wearing them. “Sometimes the children try the equipment on their dolls,” O’Hara says. Getting used to the gadgetry might take a child multiple visits over a week to two months, but surprisingly, most children are eventually able to tolerate it. Some older participants even enjoy seeing the real-time data recordings on the researchers’ laptop computer.

So far, 80 participants with autism ranging in age from 3 to 25 years have completed the overnight evaluation, which includes collecting breathing data — something rarely done with children who have autism, who may not readily put up with nose tubes or other airflow-monitoring devices. The team also collected home sleep data on 20 children with developmental delay and 44 typically developing children.

Power lines: Electrodes embedded in a black cap detect Bramli’s brainwaves, with connecting wires sending the data to a portable computer.

Thanks to the study’s creative approach, another important part of the sleep puzzle may be falling into place. The results are not yet published, but O’Hara says the most striking finding is that, like Bramli, 32 of the children with autism, or 40 percent, have apnea, compared with 11 children, or 25 percent, in the typically developing group. The implication is that at certain points during sleep, these children’s vulnerable brains don’t get enough oxygen. “That’s just not ideal for a growing and a developing child,” says O’Hara.

The Stanford investigation is “very well done” and valuable in highlighting the need to look for conditions such as sleep apnea in people with autism, says Beth Malow, a neurologist at Vanderbilt University in Nashville, Tennessee. But she notes that other studies have found sleep apnea in only about 1 to 6 percent of the general pediatric population — far lower than the 25 percent O’Hara’s group found.

O’Hara says that’s because earlier reports may have massively underestimated the problem. Those were based on surveys rather than on objective polysomnography — her study appears to be among the few to systematically assess breathing problems in autism using this gold-standard sleep-monitoring method — and do not reflect a newer diagnostic definition for pediatric sleep apnea. In any case, Malow agrees that apnea in any child is worrisome. The condition is associated with hyperactivity, she notes: It’s almost as though sleep-deprived youngsters try to fight their fatigue by being overly active.

Sleep patterns:

The Stanford home sleep data also revealed abnormalities in sleep architecture. The group with autism took a long time — about 160 minutes — to enter REM sleep and spent only 15.5 percent of the time in that sleep stage, which experts believe is crucial for normal brain development as well as processing of fear and emotions. By contrast, the control group took 100 minutes to reach REM and spent 25 percent of their sleep in that phase. (Bramli’s REM sleep looked relatively normal.)

The REM findings echo those from another small polysomnography study, which found that 60 children with severe autism were in the REM sleep stage only 14.5 percent of the time, compared with 22.6 percent of the time among their typical peers. In that study, those with autism also got more slow-wave sleep, which is important for memory retention too.

O’Hara is analyzing whether the REM abnormalities she observed correlate with cognitive function or social responsiveness in the participants. She and her colleagues are also conducting another round of home polysomnography exams. To explore the origins of the REM differences, they are testing the children’s melatonin levels to examine whether a delayed circadian clock prevents them from getting sleepy during typical bedtime hours — keeping them from entering the first cycle of REM sleep and thereby reducing total REM time.

The research is still at an early stage, and in general, some of the most promising explanations for why sleep is elusive in autism have not yet provided any clear answers. About a decade ago, there were high hopes that differences in melatonin would explain the conundrum. Some groups had found that people with autism have low levels of the hormone, and other reports suggested that melatonin supplements can be helpful for many insomniacs on the spectrum.

But studies seeking to pin sleep disturbances on genetic mutations that cause shortages in melatonin have generated mixed and seemingly contradictory results, says Malow. These studies did not account for other factors that may interfere with sleep. “You have to look at the total picture,” Malow says. Some people with autism might have terrible ‘sleep hygiene’ — bad bedtime habits — or apnea. Others might have gene variations that disrupt other regulators of the circadian rhythm or that change how the body metabolizes melatonin.

Malow and her colleagues have been trying to clarify the picture by screening their study participants for sleep-disrupting medications and medical conditions, taking a comprehensive sleep history and educating parents on good sleep habits. Her group recently confirmed that some children with autism and delayed sleep onset do have mutations that lower their production of melatonin. But these children can also carry mutations that slow down the hormone’s breakdown in the liver, so that their overall melatonin levels are close to normal, Malow says.

Nailing down the relationship between sleep disturbances and melatonin is going to require large, well-controlled studies that carefully sort participants into subsets based on their sleep issues, melatonin levels and genes influencing melatonin production and metabolism. For now, she says, “we’re kind of in that middle zone where we haven’t come up with the solid answers yet.”

Combination therapy:

Although the various reasons for sleep problems in autism are still being explored, there is good news for exhausted families: Sleep disorders are often treatable. “You can actually do something about it in a lot of cases,” O’Hara says.

The first step is for a doctor to suss out what’s contributing to a child’s sleeplessness, whether that is apnea, epilepsy, low melatonin levels or something as simple as a bedroom that’s too warm. O’Hara says a full polysomnography assessment should be part of that evaluation, and because conditions such as apnea or periodic leg cramps may not be obvious, she advocates including the overnight sleep-monitoring procedure in the standard clinical workup for all children with autism. Doing this testing at home rather than in a lab is potentially cheaper and easier, and O’Hara notes that home polysomnography results generally correlate well with data recorded in the clinic.

Family ties: Haley and Cody Bennett have four children. The younger two, 5-year-old Bramli and 7-year-old Ryker, both have autism and chronic sleep problems.

With a comprehensive sleep evaluation in hand, a clinician can tailor the best combination of behavioral therapies, medications or other treatments to each individual with autism. For instance, in cases in which bad sleep habits are involved, children can benefit when parents establish better routines — from minimizing caffeine intake to restricting video games before bed.

When sleep apnea is part of the problem, addressing the condition can sometimes lead to dramatic improvements, as Malow and her colleagues saw in the case of a 5-year-old Tennessee girl on the spectrum. After the child had surgery to remove her tonsils and adenoids, she became more alert, affectionate and interactive, and her habit of spinning in circles resolved. Although it didn’t fully alleviate her autism symptoms, sleeping better probably eased the girl’s hyperactivity and generally “set the tone” for her to become more sociable, Malow says.

Finding the right combination of solutions can be a journey, as Haley Bennett and her husband have learned. The family always had well-structured bedtime routines, and melatonin therapy didn’t make much difference for Bramli. Although the girl definitely turned a corner after the tonsil surgery, Bennett suspects both Bramli and her brother Ryker have out-of-whack circadian clocks. Although the kids tend not to be very social during the day, once it’s time to go to bed, Bennett says, “all of a sudden, they’re more social; they’re happier; they want to play with a toy that they never want to play with.”

The family moved to North Dakota in August, but Bramli’s parents hope to bring her back for further research at Stanford. Bennett says their participation has taught her a lot about sleep already, and she plans to give melatonin or other recommended sleep strategies another try, in the hopes that they will help at some point when the children are older.

Meanwhile, she says, the family members cope as best they can in the nightly struggle to get enough shut-eye. “I try to have a sense of humor about it and keep perspective that there are worse problems to have.”

Originally published on Spectrum

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How treating sleep may ease all forms of autism

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In a clinic I run at the University of California, Los Angeles (UCLA), I see children who have various genetic syndromes associated with autism. These children have a wide range of features, including intellectual disability, language problems and seizures. But they have one thing in common: poor sleep.

The inability to fall or stay asleep, called insomnia, can have far-reaching consequences. Sleep helps us to consolidate memories, learn and grow. Insomnia can aggravate cognitive and social and communication problems, behavioral challenges and anxiety; it can also exacerbate seizures.

Behavioral interventions and medications can help children with autism-related syndromes sleep better, but the treatments must be tailored to the cause of each child’s sleep disturbance.

For instance, dup15q syndrome is a condition characterized by intellectual disability, seizures and autism, caused by an extra copy of a stretch of DNA on chromosome 15. A child with this syndrome who wakes up throughout the night because of seizures is likely to need a different treatment than a child with, say, fragile X syndrome, who has difficulty falling asleep because of anxiety.

Understanding how sleep patterns vary across these genetic syndromes, and how disrupted sleep affects development, may improve our ability to treat each child’s specific needs. For this reason, I ask families about sleep at every clinic visit and carefully track their child’s response to sleep treatments.

Dream scheme:

Many of the children I see at the UCLA Developmental Neurogenetics Clinic are sleep-deprived, and their parents are usually exhausted, too. Sleep problems affect up to 70 percent of children with autism, compared with about 20 percent of children in the general population1,2.

Sleep disturbances can be particularly severe among children who have genetic syndromes associated with autism. For instance, some children with CHD8 mutations are awake for days at a time3.

Many parents of children with complex neurodevelopmental conditions do not complain about insomnia because other issues, such as epilepsy, require more urgent attention. In other words, sometimes sleep problems are a lower priority than a child’s other challenges. I always ask about sleep problems, as poor sleep is associated with problems with daytime behavior, adaptive skills and cognitive function 3,4.

The first step toward improving sleep is to identify the modifiable factors that could keep the child up at night. These include the child’s evening routine, exposure to light and screens before bedtime, hunger or gastrointestinal distress and sensory sensitivities. Certain medications, such as antiepileptic drugs, stimulants or mood stabilizers, can also disrupt sleep.

After taking inventory of these modifiable factors, we can begin to make changes. For instance, I may work with parents to develop a more consistent sleep routine or modify the child’s medication regimen. I strongly discourage parents from sleeping with their children, as this can undermine healthy sleep for both parties.

If these behavioral strategies do not help, we can explore medications. I often recommend melatonin, a hormone naturally released by the brain to regulate our sleep-wake cycle. Melatonin can help people fall asleep, but it does not prevent nighttime awakenings.

If melatonin is not the right solution, I consider a class of drugs known as alpha agonists. These medications are commonly used to treat high blood pressure. I start with a low dose and monitor children carefully for daytime sleepiness or irritability.

Tracking sleep:

I ask parents to keep a sleep diary, in which they log their child’s bedtime each night, the time the child actually fell asleep, and the timing and duration of any nighttime awakenings. This helps me track the effectiveness of interventions and identify triggers for insomnia. I order a formal sleep study only if I suspect sleep apnea or nocturnal seizures or if I cannot determine whether the child’s sleep is truly disrupted.

Although sleep diaries can tell us much about the overall sleep schedule and pattern, we need more sophisticated tools to assess the impact of poor sleep on daytime behaviors. There are standardized questionnaires for assessing sleep-related behaviors in children, but we need revised questionnaires for children with significant intellectual disability, language impairment or developmental delay. Such questionnaires, administered during routine clinic visits or before and after an intervention, could give us rich data about sleep over time.

National registries sponsored by advocacy groups for rare genetic conditions are beginning to collect detailed information about sleep. Ultimately, better data will lead to improved clinical trials, as we will know exactly what features of sleep we need to improve, and at what age or stage of development to target them.

We also need to understand the neurobiological underpinnings of insomnia in these various conditions.

Last year, my colleagues and I identified a pattern of abnormal brain activity in children with dup15q syndrome. In an ongoing study, we have found that this signature persists during sleep, potentially fueling sleep disruptions and interrupting critical processes that unfold during slumber.

Healthier sleep can have a profound domino effect on other areas of functioning. I hope that we can one day effectively treat insomnia in autism in a manner that is informed by the specific genetic cause. I will certainly sleep better when I know that the children I see and their caregivers are all well rested.

Shafali Jeste is associate professor of psychiatry and neurology and the University of California, Los Angeles.

  1. Malow B.A. et al. Pediatrics 137, S98-S104 (2016) PubMed
  2. Calhoun S.L. et al. Sleep Med. 15, 91-95 (2014) PubMed
  3. Bernier R. et al. Cell 158, 263-276 (2014) PubMed
  4. Veatch O.J. et al. Autism Res. 10, 1221-1238 (2017) PubMed

Originally published on Spectrum

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How to get children with autism to sleep

When Nick was a toddler, he struggled to make sense of language, coordinate his own limbs and orient himself in the world. His mother, Brigid Day, got some sympathetic advice from his neurologist. It was permission, essentially, to soothe her child into sleep by lying next to him in bed. “His pediatric neurologist even said, ‘That is something you can do to make his life calm and easy for him when a lot of things are hard,’” Day says. Nick had multiple delays — in crawling, walking, pointing, speaking — and at age 4, he was diagnosed as being on the autism spectrum.

The nightly ritual worked well, Day says, but eventually it got old. Nick usually took less than 15 minutes to nod off, but he sometimes remained awake for an hour. “I would be very frustrated,” says Day, who lives in Brentwood, Tennessee. Many nights, she would fall asleep in her son’s bed. On others, she would quietly get up, steal an hour or two for herself and then settle down in the downstairs bedroom she shares with her husband Mike. On such nights, though, between 1 and 3 a.m., she would inevitably hear Nick call. Because of his weak balance and motor skills, she didn’t want him negotiating the stairs in the dark, so up she would go to get back into his bed and reassure him. A soft-spoken woman who seems deeply in sync with her child, Day felt torn between addressing his needs and meeting her own. As Nick’s 10th birthday approached last year, she became increasingly convinced that something had to change. “It was disrupting my life,” she says.

Jaxon Tyler’s parents also spent years in a state of perpetual fatigue, wrestling with a different set of sleep problems. From the time he was a toddler, Jaxon, now a bright, energetic 7-year-old with mild features of autism, could take as much as an hour to fall asleep and then seemed to have no idea when nighttime was over. He would sometimes awaken his parents at 3 a.m. to ask if it was time to get up. Bedwetting was also an issue; his parents would wake him every night at around 10 p.m. to take him to the bathroom. Even so, they had to change his sheets about one night a week.

As far as parental exhaustion was concerned, “it was an 8, 9 or 10 on a scale of 1 to 10,” says Jaxon’s mother, Dawartha Tyler, who lives in Murfreesboro, Tennessee. “By the time we’d finally get him back down and settled again, it basically would be time to get up and start the day.”

At least half of children with autism struggle to fall or stay asleep, and parent surveys suggest the figure may exceed 80 percent. For typical children, the figures range from 1 to 16 percent, depending in part on how insomnia is defined. The precise nature of the problem varies from child to child, but the consequences are fairly universal. For parents and caregivers, sleep issues deepen the stresses they may already feel managing the needs of a child on the spectrum on top of life’s other demands.

For the child, sleep problems can make everything else more difficult, night and day. Poor-quality sleep may exacerbate many of the challenging behaviors associated with autism, such as hyperactivity, compulsions and rituals, inattention and physical aggressiveness. A study of 81 children with autism last year strongly linked waking up in the night to acting out during the day. Another study found that sleep problems in children with autism are among the strongest predictors of hospitalization. And yet another study last month linked sleep disturbances to extreme autism traits in children at the severe end of the spectrum.

Busy days: More outside play helps 7-year-old Jaxon Tyler get more rest at night.

Despite the toll it takes, sleep trouble was a somnolent research area until the past decade or so. Part of the issue for scientists has been how to study it. Researchers have relied mainly on parent reports, rather than on more objective measures, such as actigraphy, to determine the prevalence and nature of sleep issues associated with autism. Polysomnography — the ‘gold standard’ for some types of sleep studies — is difficult to conduct in children with autism. Those children who can tolerate spending a night or two in a sleep lab with a variety of sensors on their face and chest may be on the milder end of the spectrum to begin with, a selection bias that can skew results. Sleep research in autism is just beginning to benefit from the sort of rigorous methodology it needs, says Ruth O’Hara, associate professor of psychiatry and behavioral sciences at Stanford University in California. O’Hara has developed techniques to make polysomnography more bearable for children on the spectrum.

There is another reason for the field’s sleepy start: Compared with other features of autism, such as difficulties with language or behavior, insomnia can seem less urgent, says Beth Malow, professor of neurology and pediatrics at Vanderbilt University in Nashville, Tennessee. Malow led a sleep study involving more than 1,500 children with autism ages 4 to 10. She says she was surprised to find that although fully 71 percent of the children had difficulty sleeping — according to a standardized assessment completed by their parents — only 30 percent had received a diagnosis for any kind of sleep-related problem. And less than half of those children were prescribed any kind of medication.

“The pediatricians are just swamped,” Malow says. They have to prioritize many things, including the child’s behavior, how she is doing in school or how her language is developing. And yet, Malow says, “it may very well be that if the child is sleeping better, [she is] going to do better in terms of learning and behavior.”

A decent night’s sleep is not an impossible dream for most children with autism. The first step is to manage any pressing medical problems, such as sleep apnea or seizures. After that, basic, consistently applied changes in the child’s routine to encourage more physical activity during the day and less stimulation at night can make a huge difference. Malow is a leading proponent of this approach and has been studying efficient ways of spreading this kind of “sleep education” to families in her region.

“It’s really the low-hanging fruit,” says O’Hara, who, like Malow, is trying to expand access to sleep education in her local area. “There’s a lot we could be doing to tell parents how to implement some very simple and straightforward behavioral modifications.”

A huge need:

Why people with autism struggle with sleep issues is poorly understood. Chances are that these particular challenges converge from many biological directions, just like autism itself. Many of the medical problems that commonly trouble people on the spectrum may play a role: Anxiety disorders, attention deficit hyperactivity disorder (ADHD), gastrointestinal distress and seizures can directly interfere with sleep or may require medications that disrupt sleep. ADHD stimulant drugs, for instance, commonly cause insomnia. And many psychotropic drugs can cause daytime sleepiness that harms the quality of nighttime rest.

Some researchers point to evidence that children with autism tend to be in a heightened state of physiological arousal. For example, many have increased sensory and gastrointestinal sensitivities, elevated levels of anxiety and even — according to a few studies — faster-than-average heart rates while sleeping and while awake. “Hyperarousal can be a contributor to poor sleep in this population,” Malow says.

The body’s natural sleep-wake cycle may also be off-kilter. One small study found that some people with autism have mutations in the so-called ‘clock genes’ that govern the body’s circadian rhythms. And a number of studies have detected below-average levels of melatonin in this population. The hormone is secreted throughout the night by the pineal gland in the center of the brain, inducing and maintaining drowsiness.

Still, it is not clear how much any of these differences contribute to sleep problems in people with autism. While researchers try to sort this out, families are in desperate need of solutions. “Determining the cause is important,” says Robert L. Findling, vice president of psychiatric services and research at the Kennedy Krieger Institute in Baltimore. “But doing something about it while the cause is being elucidated is equally important.”

That pragmatic principle also drives Malow. She started out as a sleep specialist and was drawn into the intersection of autism and insomnia by personal experience: She has two sons on the spectrum. Although her own children did not struggle with sleep, she perceived a “huge need” for solutions to this problem and started investigating it about 14 years ago. She and a few other researchers began developing techniques to teach parents how to shape a child’s schedule and home environment so as to encourage good “sleep hygiene” — life habits conducive to getting a solid night’s rest. From the get-go, Malow was interested in scalable solutions that could be made widely accessible at a low cost.

Master plan: A chart showing Jaxon’s bedtime routine hangs on his bedroom door.

After conducting some smaller studies, Malow and several collaborators devised a sleep education program for the parents of children with autism. The program involves one or two hours of in-person instruction and two brief follow-up phone calls. It combines elements from the standard sleep-hygiene tool kit with tactics that address proclivities of people on the spectrum. From sleep hygiene came ideas such as: Set consistent times for going to bed and rising; darken the bedroom at night and brighten it upon wake-up; ensure plenty of outdoor activity by day; strictly limit caffeine and, before bed, enforce a tranquil period of winding-down time — without digital screens, whose blue light can upset circadian rhythms. From the autism field came strategies such as: Use visual cues, take advantage of a fondness for routine and sameness, and be attuned to sensory differences — no itchy sheets or pajamas and no noise from the dishwasher or other appliances at bedtime.

Malow and her colleagues tested the program with the parents of 80 children with autism, aged 2 to 10, who routinely took more than 30 minutes to fall asleep. Specially trained sleep educators at medical centers in Nashville, Denver and Toronto followed a detailed manual but were encouraged to personalize the program for each family. The results, published in 2014, showed a significant drop in the time it took the children to fall asleep after getting in bed (an interval researchers call ‘sleep latency’). Sleep latency went from an average of 58.2 minutes before the education program to 39.6 minutes afterward. To collect the sleep-related data, parents kept sleep diaries for their children, and each child wore an ‘actigraphy’ device that measured the duration of their sleep and awakenings based on their movements.

Not every child benefited, but 29 of the 80 participants, or 36 percent, were reliably falling asleep in less than half an hour on five or more nights per week after the treatment. The next step for Malow was to take the intervention out of the university and into the community.

“There’s a lot we could be doing to tell parents how to implement some very simple and straightforward behavioral modifications.” Ruth O’Hara

Teach the parents well:

The Tylers learned about Malow’s newest sleep education study when they spotted a flyer in their pediatrician’s office early this year. They called and were connected with Susan Masie, an occupational therapist who oversees a group practice in Franklin, Tennessee. Masie is one of six therapists in the greater Nashville area — a mix of occupational, speech and behavioral therapists and a nurse — trained by Malow’s team to deliver the same program tested in the 2014 study. The Tylers participated in the trial, which aims to ultimately include 30 families, to see whether the approach works in a real-world setting.

The Tylers completed a set of questionnaires about Jaxon’s sleep habits and their primary concerns. Then came the most exciting part for Jaxon: He got to wear the watch-like ‘actigraphy’ device to provide two weeks of baseline data on his sleep patterns. “They warned us he wasn’t going to want to take it off,” his mother says.

In May, both parents met for an hour with Masie, who walked them through an 18-slide PowerPoint presentation, stopping to chat about what was most relevant to them. Masie encouraged them to think about structuring Jaxon’s entire day so that it would culminate in restful sleep. For instance, Jaxon liked to play indoors, often in his bedroom. Masie urged them to get him outside during the day, and to move the toys out of his bedroom, which should be reserved for sleep. She also suggested more exercise. “It seems like he’s moving constantly, but he probably doesn’t get the kind of exercise he needs,” Jaxon’s father, Maurice, admitted during the session. Jaxon didn’t take naps, but he often fell asleep in the car going to and from activities. Turn on some dance music or play car games like “I Spy,” Masie offered. “Even a short nap will give him a little bit of a second wind.”

Then, together with Masie, the parents devised a simple, relaxing 30-minute bedtime routine. Masie recommended moving Jaxon’s bedtime from around 7:30 to 8 p.m. so that he would be more tired. It was possible the earlier time fell in his ‘forbidden zone’ — the period just before a person gets sleepy, when he is especially peppy and alert. Stimulating activities, such as splashing in the bathtub with his twin sister, Jordyn, or playing with his older sister, Jadyn, would have to happen before 7:30; nothing but low-key elements belonged in the bedtime routine. The schedule, hung as a colorful visual chart on Jaxon’s bedroom door, wound up like this: Quiet play→brush teeth→read→say prayers→lights out.

Quiet time: Jaxon avoids stimulating activities half an hour before bed.

To keep Jaxon from bothering his parents in the wee hours of the morning, Masie introduced another visual: a sign on his parents’ bedroom door showing a sleeping moon wearing a nightcap. Jaxon was not to knock while the sign was up.

“Doable?” Masie asked. The Tylers agreed that it was. Masie reminded them to complete their “homework” of pressing a start button on the actigraphy watch at bedtime and keeping records required for the study. They agreed to meet or talk again in about a week.

Over the next few days and weeks, Jaxon and his family benefited from the new routines. The fact that school was out for the summer made it easier to move bedtimes and also to spend more time outdoors in the sun. “I was amazed what a big impact it had — not just for him, but the whole family — in regard to routine and everybody having a restful night’s sleep,” Jaxon’s mother says. At Masie’s suggestion, the Tylers began to take Jaxon to the bathroom at his new bedtime, 8 p.m., rather than waking him in the night. “That was huge,” his mother says. The actigraphy readings confirmed the improvements. Jaxon’s average bedtime moved from 7:46 p.m. to 8:28 p.m., and his wake-up time went from 5:54 a.m. to 6:55 a.m. It took him, on average, just 16 minutes to fall asleep, compared with 23 before the intervention.

Brigid Day was also recruited to the study through her pediatrician’s office. She worked directly with Lydia MacDonald, a registered nurse on Malow’s team who fills in as a sleep educator. Like the Tylers, Day was encouraged to move her son’s bedtime later and to add more outdoor activity by day and less stimulation at night. MacDonald and Day created a bedtime schedule that was customized to Nick’s preferences. He was attached to petting their beagle, Fiona, at night, so that became part of the routine: Toilet→pajamas→pet Fiona→vitamins→lights out.

The tough part for Day was breaking the co-sleeping habit. After brainstorming with MacDonald, Day decided on a variation of the so-called ‘rocking-chair method.’ She would sit on a couch in the next room while Nick tried to go to sleep. If he called, she would say, “I’m right here,” but not get up. MacDonald encouraged her to be “brief and boring” in all their exchanges after bedtime.

To manage his separation anxiety, Nick was given ‘bedtime passes,’ a strategy developed by sleep researchers in the late 1990s. These are colorful laminated cards that, as MacDonald puts it, serve as “a ticket for parent interaction.” Day says they helped Nick cope with the new routine: “He could decide when it was too much … like when it made him too sad or when he was too lonely.” If, on the other hand, he got through the night without using a pass, he would earn a reward — usually a special activity with his mother. Nick’s actigraphy numbers did not improve, but since they completed the program, Day happily reports, “we can walk upstairs, do the routine, I say goodnight, give him a kiss, we turn the light off, and I see him again in the morning.” As for Day herself: “I’m getting a whole different level of sleep,” she says.

“It may very well be that if the child is sleeping better, [she is] going to do better in terms of learning and behavior.” Beth Malow

A tiny pill:

Malow hopes to complete the community-based trial in 2018. It’s too soon to say whether the final results will match those from the academic setting, but Malow is optimistic. Her team is already making plans to bring the approach to a wider range of families. For instance, a pilot study last year showed that the therapy also works for adolescents with autism. The study’s 18 participants took less time to nod off, on average, and spent more time in bed actually sleeping.

Malow has also hatched a plan to introduce sleep education at public schools for children with autism or other conditions, such as ADHD. “Not every community has a therapy practice,” she reasons, “but every community has a school.” One elementary school near Nashville has agreed to begin offering the program early next year.

“One thing I’m really excited about is we’ll be able to take direct measures of how children are performing in class,” Malow says. “Are they staying on task? Are they attentive? Are they engaging in disruptive behavior less if they’ve had the intervention, and they are sleeping better? I think these are really important measures.”

Behavioral therapies have their limits. Malow says that, when done faithfully, these techniques can improve sleep for roughly one-third of the children who try them. There’s a sizeable group, however, who have underlying conditions that must be addressed separately. One 2016 study, for example, found that children with autism are more likely to be diagnosed with sleep-disordered breathing, including apnea, than controls are. Others may have restless leg syndrome, which presents as an irresistible urge to move the legs and therefore interferes with sleep, O’Hara says. It is difficult to assess in children on the spectrum but can be treated with dietary changes or a variety of medications.

Many children with autism and diagnosed sleep problems take drugs to help them get more rest. Although non-prescription melatonin is by far the most popular, some children are prescribed epilepsy drugs, sedatives, alpha agonists such as clonidine or antidepressants such as trazodone, depending on the nature of their problem.

A new long-acting melatonin mini-pill, just 3 millimeters in diameter, could be a game changer if its early results are borne out. Ordinary melatonin has a short half-life in the bloodstream; it may help people fall asleep but not necessarily stay asleep. The slow-release version better approximates the way the body’s own melatonin is released throughout the night. The manufacturer, Neurim Pharmaceuticals in Israel, already makes a sustained-release melatonin tablet (Circadin) approved for use by adults aged 55 and older in many European countries. But the large pill is difficult for children to swallow, and it loses its long-acting properties if crushed. In a trial of 125 children with autism or a related condition, the tiny pill yielded big results: Nearly 70 percent of the children got better sleep than before. The pill helped the children fall asleep faster, by 40 minutes compared with 13 for placebo. It also extended their total sleep time by nearly an hour — a significant improvement.

Lights out: Better sleep has helped Jaxon’s concentration at school, his mother says.

An important aspect, from a clinical perspective, is that the children were able to swallow the pill, says Paul Gringras, a lead researcher on the trial. The researchers plan to follow the children for 80 weeks and collect information on their social behavior, sleep and any possible side effects. The company hopes to make the drug available by prescription in Europe by October 2018, and will aim for U.S. approval after that.

The big hope for all of these treatments is that apart from improving sleep, they will benefit daytime behavior and learning in children on the spectrum. Anecdotally, at least, some parents say they see an improvement. Brigid Day reports that with uninterrupted sleep, Nick seems “more attentive to details.” Jaxon’s mother says she sees something similar: “I think sleeping through the night has helped with his concentration and focus at school, as well as his ability to deal with issues that would sometimes impact him emotionally.”

Jaxon is doing well in second grade, she says, and at home he’s busy creating his own pop-up books and building extravagant structures with Legos. And the entire family is sleeping better at night. “I go to bed now,” Jaxon proudly declares. His parents smile, and his father nods in agreement: “Yes, you do.”


This article was republished in Scientific American.

Originally published on Spectrum

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What’s the connection between autism and sleep?

For many people with autism, a good night’s sleep is an elusive thing. As much as 86 percent of children on the spectrum experience disrupted sleep, which can leave them feeling out of sync with the rest of the world. This video explores the connection between autism and sleep, and offers steps autistic people can take to feel more rested.

Originally published on Spectrum

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Sleep problems in autism, explained

A good night’s rest isn’t guaranteed for anyone, but it is downright elusive for many people with autism. Individuals on the spectrum often have trouble falling and staying asleep.

And that may worsen certain features of their condition, such as repetitive behaviors, which can, in turn, make sleeping even more difficult.

Given this disruptive feedback loop, sleep problems are among the most urgent concerns for families grappling with autism. But so far, this also happens to be among the least-studied aspects of autism.

Here’s what researchers know so far about the causes and consequences of — and treatments for — sleep problems in autism.

How common are sleep problems in children with autism?

Between 44 and 86 percent of children with autism have a serious problem with sleep1. By comparison, between 10 and 16 percent of children in the general population have difficulty sleeping. This range among people with autism may be wide because studies use different measures to study sleep.

What types of sleep problems are common in autism?

People with autism tend to have insomnia: It takes them an average of 11 minutes longer than typical people to fall asleep, and many wake up frequently during the night. Some people with the condition have sleep apnea, a condition that causes them to stop breathing several times during the night.

Sleep in people with autism may also be less restorative than it is for people in the general population. They spend about 15 percent of their sleeping time in the rapid eye movement (REM) stage, which is critical for learning and retaining memories. Most neurotypical people, by contrast, spend about 23 percent of their nightly rest in REM.

Does this lack of good sleep have consequences?

There is mounting evidence that too little sleep can exacerbate autism features, such as poor social skills. Children who do not get enough sleep often have more severe repetitive behaviors and a tougher time making friends than other people on the spectrum. They also tend to score lower on tests of intelligence. However, it is unclear whether these problems stem from poor sleep, contribute to it or both.

One 2009 study found that children with autism who have sleep difficulties are more hyperactive and easily distracted than those who sleep well1.

Why do people with autism have difficulty sleeping?

Many people with autism have other conditions, such as gastrointestinal problems, attention deficit hyperactivity disorder (ADHD) or anxiety, and each of those is known to disrupt sleep. Cramps from constipation, for instance, may keep a person with autism up at night.

People with these other conditions may also take medications that affect sleep. For example, many people with ADHD take stimulants, which are known to cause insomnia.

In some cases, people on the spectrum carry mutations that make them prone to sleep problems. A 2015 study suggests that individuals with autism are twice as likely as typical people to have mutations in genes that govern the sleep-wake cycle. Some studies suggest that people on the spectrum carry mutations that affect levels of melatonin, a natural hormone that controls sleep.

How can researchers assess sleep problems in people with autism?

Polysomnography is the most common and thorough type of sleep test. It tracks a person’s brain waves, eye and limb movement, and breathing patterns during sleep. Because it requires multiple sensors, wires and computers, it is typically done in a lab.

But this gold-standard method is not always practical for people with autism, many of whom require specific routines at bedtime. At least one research group has brought polysomnography equipment into the homes of people with autism to try to get around this problem.

A less cumbersome sleep test is actigraphy, in which a wristwatch-like device records a person’s movements throughout the night. People can use the device at home to record the amount of time a person sleeps each night.

Researchers can also learn about sleep patterns by interviewing families or asking them to maintain sleep diaries. But these methods are error-prone because they rely on people’s memories.

Are there treatments available to help people with autism sleep better?

In some ways, the fix can be straightforward: Establishing a routine, such as an order of activities at bedtime, can often help a person fall asleep; so can changing the temperature or lighting in a bedroom. Sticking with regular bed and wake times can put the brain and body on a schedule that makes sleep more reliable.

The U.S. Food and Drug administration has approved insomnia drugs, such as Ambien, for adults with autism but not for children. For more serious problems such as sleep apnea, clinicians sometimes recommend a nighttime breathing device such as a continuous positive airway pressure (CPAP) machine or, in rare cases, surgery.

But for many sleep issues, melatonin supplements may be a good option. Some research suggests the supplements help children with autism fall asleep faster and get better-quality sleep.

Would better sleep improve quality of life for people on the spectrum?

Maybe. No large, definitive study exists on this topic. But research has shown that typical children and those with autism who undergo surgery to alleviate breathing trouble during sleep show better social communication and attention as well as fewer repetitive behaviors. Parents reported similar improvements in a small study of children with autism who took melatonin supplements.

Better sleep is “not going to cure autism,” says pediatrician Angela Maxwell-Horn, assistant professor of pediatrics at Vanderbilt University in Nashville, Tennessee. But, she says, children with autism who get back on a regular sleeping schedule seem to learn better, are less irritable and have fewer problem behaviors.

  1. Goldman S.E. et al. Dev. Neuropsychol. 34, 560-573 (2009) PubMed

Originally published on Spectrum

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