Help with a 19 year-old with ASD who does not sleep at night

Question: My 19-year-old severely autistic son no longer sleeps at night. He stays awake at night and is very agitated. He does not sleep during the day either, so it is not as if he is mixing up his days and nights. He simply does not sleep at all. Any ideas on what can be done? I have tried melatonin, but it does not help at all. Any direction would be appreciated.

Answer provided by Jill Matson, MSN, RN, CPNP Nurse Practitioner, AAOM Clinical Specialist

Individuals with Autism Spectrum Disorder (ASD) experience a higher rate of sleep problems than their typically developing peers. Studies estimate that sleep disorders among individuals with ASD range from 45% to 86%. Difficulty falling asleep, staying asleep, and early morning waking are the most common sleep problems seen in individuals with ASD, but other sleep disorders such as sleep walking, sleep talking, sleep apnea, bruxism (teeth grinding), and restless leg syndrome can also be problematic. Studies also suggest that sleep problems among children with autism are chronic in nature and not necessarily associated with young age.

Children with autism should be routinely screened for sleep problems. Obtaining a comprehensive medical history, including past and current sleep problems, is essential. Screening tools such as the BEARS, the Children’s Sleep Habits Questionnaire (CSHQ), and the Modified Simonds and Parraga Sleep Questionnaire (MSPSQ) are helpful tools that screen for a number of sleep problems in individuals with ASD. Keeping a sleep log or diary is an easy way to gather information about sleep habits as well. Polysomnography, which is a sleep study or test used to diagnose sleep disorders, may also be helpful, although not always necessary.

Once a sleep problem has been identified, medical factors that may be contributing to the problem should be ruled out first. Medical conditions associated with sleep difficulties include low levels of melatonin (an important regulator of sleep), gastroesophageal reflux (GERD), constipation, abdominal pain, seizures, nighttime coughing, snoring, eczema, and dental pain. Any of these symptoms can contribute to sleep problems and should therefore be identified and treated prior to initiating other interventions.

Once medical problems have been ruled-out, behavioral approaches should be explored. Behavioral interventions are typically recommended as a first line treatment strategy for sleep disturbances in cases where medical issues have been ruled out. There are a variety of behavioral strategies that may be effective. Behavioral specialists can be helpful in developing an individualized behavior plan to address sleep difficulties and assisting parents or caregivers with implementation.

Regarding pharmacological interventions, melatonin supplementation is the most widely studied and has been found to be the most effective medication intervention to treat children with ASD who have difficulty with sleep onset. Although fast release melatonin can be helpful in initiating sleep, it is often not very useful in keeping kids asleep throughout the night. Controlled-release melatonin, however, in which the medication is released in a more steady state throughout the night, has been found to significantly reduce nighttime awakenings as well as improve sleep latency and total sleep duration. Melatonin, which is available without a physician prescription is a reasonable pharmacological option to try in patients where behavioral strategies have failed as it is generally well tolerated with mild to no side effects. Additional medication options may include risperidone, clonidine, trazodone, secretin, multivitamins, and iron supplements, but there is less evidence to support their use for management of sleep disorders among children with autism.

Sleep problems are very common in individuals with autism. Initial assessment should include a medical history and physical by exam by the primary care provider to rule out any medical conditions that may be contributing or causing sleep related disturbances. Next steps include exploring and implementing behavioral strategies and then medication options, if needed. Treatment plans should be individualized and response to interventions should be monitored on a consistent basis so that appropriate adjustments can be made to the treatment plan as needed.