Raising a child with autism is no easy task, no matter where they fall on the spectrum. In fact, it's a long-distance marathon of sorts with no finish line. It's exhausting. It's frustrating. It's hard.
Now throw in the fact that about half of all those with autism have a sleep disorder and exhausting reaches a whole new level. The sleep issues are often related to the inability to fall asleep within a reasonable amount of time or waking up in the middle of the night without being able to fall back asleep quickly.
From time to time, most people experience their own sleep issues. During a stressful month, such issues may even occur frequently. The sleep issues discussed here are persistent and long term, and they're somehow related to autism. What can be even more frustrating is that nobody really knows why such a high rate of sleep disorders affects autistic individuals. Experts on autism are currently conducting research with families to discover the root cause. As of now, not much has been uncovered. "One theory suggests a malfunction in the body's circadian rhythm, which is the body's 24-hour biological clock, and the inability to regulate the brain's production of melatonin," reports Dr. Patricia Aguayo, MD, MPH, assistant professor and autism disorder specialist at University of Utah Health.
As a parent, the best thing you can do is to encourage and enforce good sleep habits, otherwise known as sleep hygiene. The plans you'd make for getting any young child to sleep apply to children with autism. The main difference is that the ramp-up to bedtime may take longer, and the routine needs to be much more regimented.
Turn off electronics
No less than an hour before bedtime, the digital fun should end. Watching TV, playing video games, and browsing the web can all inhibit sleep if done close to bedtime, when the mind needs to begin to shut down. Plus, the light from electronic devices can inhibit the production of melatonin.
Cut out the soda and snacks
Sugar and caffeine are some of sleep's worst enemies. Caffeine consumed even six hours before bedtime has a negative effect on sleep. But it can be difficult to say no or to totally hide the good stuff from a sneaky appetite. Keep the yummies away well before bedtime. Also, make sure young children don't have anything to drink less than an hour before bedtime. A bathroom break at 1 a.m. can undo all the work you did getting your child to sleep.
Routine, routine, routine
Autistic children perform much better when activity is predictable, and that's no different when it comes to bedtime. "Choose a simple routine that lasts about 30 minutes," Dr. Aguayo suggests. "It can involve things such as bath time, getting in PJs, reading a book, listening to soothing music, or slowly dimming the lights." Transitions from one bedtime activity to the next need to be done slowly and calmly. But if the child resists, it's best to be quietly firm and persistent. Don't give in to pleading and crying.
You've most likely heard of the type of melatonin that's sold in stores as pills or gummies. Because melatonin is naturally found in some foods, it is not considered a drug and therefore is not regulated by the FDA the same as drugs. Melatonin supplements can help encourage sleep, but knowing the right dosage and time to take it can be tricky. If you're considering the use of these supplements, consult your pediatrician. Be careful with the gummies, as they are disguised as treats. Melatonin taken during the wrong time of day can throw sleep patterns off even more. Although there have been no reported cases of overdose, the understanding of these supplements and appropriate dosage is limited.
Take a breath and take care of yourself.
Did we mention this was hard? Sleep deprivation in parents often creates problems at work, in relationships, and in other aspects of life. Extreme sleep deprivation can be downright dangerous, too. Sometimes a good scream into a pillow can help. But give yourself a break. You're doing the best you can. You need restorative sleep just as much as your child does. If possible, try to alternate bedtime duties between other family members. Take a deep breath, try to remain positive, and never "lose it" in front of your child. Remember that it's not their fault.
Another thing to remember: it is often easy to turn to medication. This should be a last resort. Consult your pediatrician for details and find out if medication is right for your child's situation.