Autism is a common disability, affecting as many as 1 in 54 children. With more than 50,000 children on the autism spectrum turning 18 each year, we are looking at more than 500,000 autistic individuals entering adulthood over the next decade. Sleep affects 50-80% of those with autism and is the most common co-occurring condition that parents report to their child’s healthcare provider. Insomnia, which has been defined as difficulty falling asleep, staying asleep, poor sleep quality, or short sleep duration, is the most common sleep problem within autism. As we will discuss in a future article, sleep affects health and well-being, in both the individual and family.

Causes of insomnia in autism and related disabilities can be placed into three simple buckets—medical, behavioral, and biological. The medical bucket includes other sleep disorders such as obstructive sleep apnea, which can affect both children and adults, especially those carrying excessive weight. Add restless legs syndrome, and psychiatric conditions such as attention deficit hyperactivity disorder, anxiety, and depression, all of which can affect sleep. Medical conditions such as seizures, gastrointestinal problems, pain, and eczema can also interfere with falling asleep or contribute to night wakings. Low or low normal ferritin (iron stores) levels below 50 ng/ml can cause restless legs, leg kicks, or restless sleep, and iron supplements can help. Medications to treat a variety of conditions, including antidepressants and stimulants, can make it harder to fall asleep. The good news is that many of these medical conditions are treatable and addressing them can restore restful sleep.

IT IS HELPFUL TO VIEW INSOMNIA AS A CONDITION THAT IS NOT "ONE SIZE FITS ALL" BUT INSTEAD SELECT TREATMENTS THAT MEET THE NEEDS OF THE CHILD AND FAMILY, WHILE ALWAYS SEARCHING FOR A POSSIBLE MEDICAL OR BIOLOGICAL CAUSE OR CONTRIBUTOR.

The behavioral bucket touches upon aspects of good sleep habits, also referred to as sleep hygiene. These include not only what happens at bedtime, but what occurs throughout the entire day. For example, getting enough light in the morning can actually make it easier to fall asleep at night, as any of us who have traveled overseas can attest to. Physical exercise has a similar effect on promoting sleep, although exercise too close to bedtime may keep us up. Limiting drinks with caffeine, including sodas, tea, and chocolate milk, can promote sleep. Screens—whether from video games, phones, laptops, or televisions—can keep us awake through the stimulating “blue” light they emit, the content they provide, or both. Even the timing of when we go to bed can make a difference, with teens who have gone through puberty finding they require later bedtimes (our brains release melatonin two hours later, on average, after puberty). In those with sensory sensitivities, the level of noises and light can affect sleep at bedtime. The firm pressure of a weighted blanket can be comforting and sleep-producing.

Bedtime routines, including visual schedules with photos or line drawings, in those with limited language, and checklists in those with more advanced language, can be very helpful. We also have found that simple visual aids, such as a stop sign on a child's door

to remind them to go "back to bed," coupled with bells or something else on the door to alert the parents to their awakening, can be very helpful. A bedtime pass is a small card (that may include a picture of the child's favorite animal or cartoon character) that encourages children to stay in bed and "exchange" their pass in the morning for a reward. Parents can also be taught strategies to comfort their children while minimizing interactions that stimulate them.

The biological bucket includes areas such as being overly arousable, having difficulty with processing melatonin, or having the genes for poor sleep. Many parents report that their children “can’t turn their brains off.” Overarousal, or hyperarousal, can tie together anxiety, insomnia, or being more sensitive to sensory stimuli in the environment. A vicious circle can be set up, with insomnia at night leading to more behavioral problems during the day, and then more insomnia at night. Daytime stressors can make everything worse, and result in increased levels of cortisol at night. Even when asleep, children on the autism spectrum have exhibited elevated heart rates, a sign of overarousal. Medications can often help with overarousal, but behavioral approaches (see above) can be helpful as well.

Melatonin, referred to as the "hormone of darkness," is released at night, with its production suppressed during the daylight hours. In addition to promoting sleep and synchronizing our biological clocks, it may act to decrease anxiety and decrease overarousal. Some studies have shown that melatonin is deficient in children or adults on the autism spectrum. Other studies have documented normal melatonin levels but have shown that melatonin supplements can promote sleep. Genes that regulate melatonin production or breakdown are altered in autism and other psychiatric conditions.

While insomnia is very treatable in many on the autism spectrum, or with related disabilities, we are still learning the best ways to provide treatment to children, teens and adults. While many benefit from working with a trained psychologist or therapist, there are some parents who can learn these strategies on their own. Older children and adults may also benefit from formal CBTI (cognitive-behavioral therapy for insomnia) but may also be successful with "do-it-yourself" strategies (see resources at end of article). It is helpful to view insomnia as a condition that is not "one size fits all" but instead select treatments that meet the needs of the child and family, while always searching for a possible medical or biological cause or contributor.

Behavioral treatments should be considered the "first-line treatment" for insomnia, given that they often help many children and do not have the side effects of medications. However, some children require supplemental melatonin or prescription medications to fall asleep or stay asleep. These should be used sparingly – to promote behavioral strategies rather than substitute for them. Whenever possible, work with the healthcare provider to use a medication that will treat a co-occurring condition such as epilepsy, anxiety, or depression. Starting at low doses can avoid excess sedation and other side effects. It is important to avoid adding more medications to those that aren't working but instead substitute new medications for those that aren't working. More studies of medication effectiveness for sleep, and side effects are needed, in real world settings that collect data from people with autism and related disabilities, and their families. •