You know how you feel after a great night’s sleep? Refreshed, filled with energy and ready to take on whatever life throws your way? Children with autism feel that way too! Good sleep improves health and mood, reduces anxiety and tames aggression.
As a sleep doctor, I see many children with autism who struggle with sleep (about 40–80%). Their lives and those of their parents, are turned around when their sleep improves. Melatonin supplements are one way to improve sleep in autism.
Melatonin is a natural substance that is created in our brains when it becomes dark in the evening. It makes us drowsy, and helps set our brain’s internal clock to promote sleep. Figure 1 shows the pattern of our natural melatonin throughout the day and night.
Figure 1. Pattern of natural melatonin production. Melatonin production increases with darkness around 8 pm, peaks in the middle of the night, and falls to daytime levels by early morning. SOURCE: BrainWise: The Sandhills Neurologists Blog.
Meet Matthew*, a 6-year-old boy with autism whose evenings have become battles. He won’t turn off his iPad, screams when told to go to bed, and keeps leaving his bedroom to find his parents, Mark and Betty. Mark and Betty allow him to fall asleep in their bed out of despair. The three of them toss and turn all night.
Mornings are a struggle. Matthew won’t wake up to get ready for school. Matthew’s teacher has told Betty that Matthew is “disruptive” in class — when he isn’t falling asleep in class! Mark and Betty’s marriage is on the rocks due to the stress and strain of Matthew’s evening battles, restless nights, and morning struggles.
By the time Matthew’s parents came to me, they had earnestly tried to put a soothing bedtime routine in place for Matthew. They replaced his iPad with calming books and made sure that his bedroom was quiet and dark. He still screams and leaves his bedroom to find them. They are exhausted!
After taking a look online and talking with me, Betty decided to give Matthew 1 mg melatonin. She chose a credible brand (more about that in Part 2). Mark and Betty found that Matthew was able to relax with the melatonin and follow a bedtime routine. This included turning off his tablet, reading a book, singing a song with his parents, and falling asleep on his own within 20 minutes. He stayed asleep through the night, and woke up easily in the morning, without struggles. Matthew was better behaved at school and is making good progress in his speech and other therapies.
*Matthew is a composite of children I have seen over many years
Melatonin is one of the most studied medications for sleep, and carefully designed studies have shown that it is effective in helping children with autism like Matthew fall asleep. Melatonin supplements can be safely used alongside other medicines your child may be taking.
There is a dark side to melatonin though. In the last several years, there has been an uptick in overdoses of melatonin (Figure 2). Between 2012 and 2021, the yearly number of ingestions increased 530% with more than 260,000 ingestions reported. Children experienced drowsiness, dizziness, headache, vomiting, and more serious side effects, such as increased body temperature, low blood pressure, and increased heart rate. Although only a small number of overdoses (1.6%) resulted in serious outcomes, five children required mechanical ventilation (machine that breathes for them) and two children died.
Figure 2 shows the climbing number of serious outcomes related to melatonin ingestions. SOURCE: MMWR. 2022.
There is a lot of information on melatonin on the internet, and on social media. The number of posts has increased since COVID-19 began (Figure 3), perhaps because children’s sleep got worse, at least in some groups such as children with autism. How does a parent sift through all of these posts, and all the websites out there? How do you know what to believe?
Figure 3. Number of tweets related to melatonin increased during COVID-19 and was highest for melatonin. CBD = cannabidiol (substance found in marijuana that does not cause a “high.”) SOURCE: Sleep Health. 2023.
And if melatonin is safe, how do you know which of the multiple brands to buy? How much do you give? When do you give it? As a doctor, I want to help you navigate these questions on your own. I want you to learn how to find sources out there on the internet that you can trust. Why is that?
Because if you do your own research before you talk with your doctor, you will be working together as partners with your doctor (or nurse practitioner or physician assistant) to help your child. You will feel more informed and more empowered to decide if melatonin is right for your child.
In my next blog, I will present some of the questions parents are curious about related to melatonin, and how to figure out the answers. We will talk about how to choose a safe melatonin supplement, how much to give and when to give it, and more! I hope you will read on!