Autism and Sleep Problems: An Interview with Yemi Kifle, MD
Yemiserach Kifle, MD, is associate medical director of Seattle Children’s Pediatric Sleep Disorders Center and clinical associate professor in the Department of Pediatrics at the University of Washington, School of Medicine. She is also associate director of the Pediatric Pulmonary Leadership Training Center. Her work focuses on diagnosis, management and follow-up of patients with sleep apnea. Her research interest is in looking at cognitive function of children with sleep apnea before and after treatment with continuous positive airway pressure (CPAP). Her other area of interest is the prevalence of sleep disturbance in children with autism.
It’s so underrated.
If you routinely sleep through the night, you likely won’t know what I’m talking about in this blog. If you’ve had a newborn in your home, you have some idea. If you’re a parent of child with an Autism Spectrum Disorder (ASD), you most likely know exactly what I mean.
I used to take sleep for granted until I had kids. Now it is one my most favorite things in the world, in large part because it is a precious commodity in our home due to the disrupted sleep patterns of our child with autism. Typically between two and four in the morning, I hear the familiar click of her light switch and then her door open as she heads down the stairs to place her order for an early bird breakfast. All these years of broken sleep and hypervigilance have turned me into an extra-light sleeper, ready to bounce out of bed after her.
Like a seeker of the Holy Grail, I’m forever looking for answers to why she doesn’t sleep and what we can do to change that. If you read our blog on Why Do Kids with Autism Do That? you know that our panel of experts shied away from that question. I decided to look to our sleep medicine department for more on the topic and that is where I met with Dr. Yemi Kifle. Here’s what I learned:
theautismblog: Dr. Kifle, please tell us how you came to work with children with autism.
Dr. Kifle: My interest in autism came about several years ago when we began to see more children on the spectrum and their parents seeking answers to sleep problems. This and the Autism Treatment Network opened my eyes to what a significant issue sleep is for children with autism. I was a bit timid at first, fearing I didn’t know enough to be helpful but I decided to learn as much as I could and to do my best to provide some answers to the common sleep issues families face. It became important to me to help others know that sleep disturbance is a problem that can be treated.
theautismblog: Do most children with autism have sleep problems?
Dr. Kifle: Many do. Study estimates of sleep disturbance in children with ASD range from 44-89%.
theautismblog: What are the most common sleep issues for children with autism?
Dr. Kifle: The most common issues we see are highly irregular sleep-wake cycles, unusual, problematic sleep routines (often accompanied by repetitive behavior), difficulty settling and delayed sleep onset, frequent and prolonged night-waking, short sleep duration and early morning wake times.
theautismblog: Why do children with autism have sleep difficulties?
Dr. Kifle: It is not known with certainty what causes these issues but abnormalities in circadian rhythm (our body’s “sleep clock”), disturbance in melatonin production, and perhaps abnormalities in other hormones or neurotransmitters may be involved. There may be other factors involved such as increased sensitivity to light, sound, touch, temperature and lack of bedtime routine.
theautismblog: Are the sleep recommendations for children with autism the same as those for typically-developing children? In other words, do children with autism actually need less sleep?
Dr. Kifle: There is great variation in what is considered “normal” when it comes to sleep, not just for children but for adults as well. Because we do know that children with ASD have more sleep difficulties than typically-developing children, the recommended sleep requirements may not apply. A child’s behavior during the day is a better indicator of whether he or she is getting enough sleep at night.
theautismblog: At what age do children with autism outgrow naps?
Dr. Kifle: Again, there is wide variation in the age at which children outgrow the need for naps but for most typically developing children, it is around age 4 or 5. Some children give up naps as early as a year and a half and 25% of 5 year olds still nap. Children with ASD vary in this regard as well. If a child is tending to nap later and later in the afternoon, it may be that he or she is getting to a place where a nap is no longer needed.
theautismblog: How are sleep problems evaluated?
Dr. Kifle: First, we get a good history of the sleep issues from parents and gather details that will inform next steps. For example, if a child’s symptoms possibly suggest a concern for obstructive sleep apnea (i.e.: snoring, restless sleep, mouth breathing, pauses in breathing during sleep, sleeping on stomach), we might begin with a visual examination or X-ray of the tonsils and soft tissue to see if there is enlargement. In some cases, a polysomnogram or sleep study may be indicated and this involves spending the night in our sleep lab. We work closely with parents to prepare for this, using child life specialists, desensitization, tour of the lab, and social story.
theautismblog: How are sleep problems treated?
Dr. Kifle: It depends on what the issue is. Possible treatments include removal of the tonsils and/or adenoids, use of a CPAP (continuous positive airway pressure) machine to help breathing problems caused by sleep apnea, medication or supplements and developing good sleep routines.
theautismblog: Melatonin is often a first sleep aid that parents try for their child’s sleep problems. How effective is Melatonin?
Dr. Kifle: It can be quite effective for some. Melatonin tends to help with onset of sleep rather than sleep maintenance. There are some newer extended release versions that may help a child sleep longer through the night.
theautismblog: If a child with autism tends to awaken very early, is it a good idea to try and have them go to bed later so they sleep later? (i.e. a 5 year old who falls asleep around 8 p.m. and awakens at 4 am and does not nap – does pushing bedtime to 9 p.m. help?)
Dr. Kifle: It may or may not. For some children this works but for others, it doesn’t and they continue to wake up early. It can be difficult to keep a child awake later and you could create a struggle.
theautismblog: If a parent has concerns about their child’s sleep patterns, who should they contact for help?
Dr. Kifle: Your child’s primary care physician or autism center provider can help and make any referrals if need be.
We’d like to thank Dr. Kifle for sharing her insight with us on sleep disturbance in children with autism. And to all you weary parents out there, ask for help if your child isn’t sleeping well and check out the Sleep Tool Kit from Autism Speaks.
We had a 11 yr old girl and it would take her hours to fall asleep at night
We struggled w this for years
We started melatonin 2 yrs ago and now she sleeps like a rock. No more tossing for hours and fidgeting
It is straight to bed and she sleeps 1000X better.
I think it has helped her behaviors throughout the day.
We started at 1mg and now she is 13 and takes 2mg.
Best thing we have done so far.
My son is 35 years old. He is an autistic and mentally challenged adult who has never slept throughout the night. He too has a sleeping pattern of falling asleep early, usually around 8:30 p.m. and awaking around midnight. He roams the house every hour from 2 am, while I patiently encourage him back to bed , until I finally awake at 5 am. This has been his routine for the past 32 years, and mine routine as well. We are both sleep deprived. He has epilepsy and is non verbal. He is on medication for seizure disorder and risperdone for combative behavior. I have never tried melatonin. It might be worth a try, of course , I believe diet is a factor in behavior. However, consistency is a challenge.