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Autism Spectrum Disorders and Sleep (by Natalie Roth, Ph.D., Clinical Psychologist at Alternative Behavior Strategies)

I remember being at dinner with some friends a few years ago. We were reminiscing about the early infancies of our children and how we celebrated the moment when our youngsters began sleeping through the night (or somewhere close). We joined in the discussion with the enthusiasm typical of mothers speaking to other mothers who’ve “been there”, but whose travail was somewhere in the past. That is, most of us did. One of my dear friends reacted to the conversation by putting her hands over her ears and joking that she “didn’t want to hear it”. Her two children had AutismSpectrum Disorders and, into early elementary school, were not predictably sleeping through the night. While her reaction was impressively good-natured, the long-term struggle with something as basic as sleep had real-life, everyday ramifications for their family, and underneath her lightheartedness, it wasn’t a casual matter.

Practitioners and researchers who work with AutismSpectrum Disorder have increasingly taken notice of the wide-spread and serious matter of sleep disruption in ASD children, teens, and adults. Sleep problems are very common in this population, with studies indicating difficulties in this area occurring for between 50 and 83% of ASD children, often extending into adolescence. More and more, as professionals are developing intervention priorities, improving sleep is at the top of the list. Sleep difficulties can take different forms including:

• Problems with sleep latency (difficulty falling asleep)
• Waking through the night; sometimes staying up for prolonged periods of time.
• Early waking
• Persistent need for co-sleeping
• Poorer quality of sleep, such as restlessness

The reasons for the rate of sleep disruption in this population is an on-going question for researchers, but some likely causes include:

• Possible abnormalities in brain systems that regulate sleep
• Differences in hormones such as melatonin and other brain chemicals that affect sleep.
• Poor sleep hygiene (the environment and routine that are provided to support sleep)
• Behavioral issues such as difficulties setting and maintaining limits.
• Medical issues such as epilepsy or gastroesophageal reflux that can disrupt sleep and are more common in children with ASD
• Psychiatric issues such as anxiety and/or depression
• Difficulties reading social cues: children with ASD may not “read” the signs that the family is getting ready for bed because they are not attending or interpreting the meaning of these behaviors.
• Sleep disorders such as apnea, sleepwalking, nightmares, night-terrors, and restless leg syndrome. (www.autismspeaks.org).

It can be difficult, especially for new parents, to determine when a child has a problem with sleep that may require intervention, and those that fall in to the category of “typical” disruption. It may be helpful to use the following as a guideline for trying to determine whether normal variations in sleep have reached the level of a sleep disruption:

• If it takes longer than 30 minutes from the end of the bedtime routine to get to sleep.
• If a child is unable to get to sleep without the presence of another person.
• Frequent night waking, particularly if he/she is not able to get back to sleep easily.
• If a child/teen/adult isn’t getting enough sleep per night. Based on review of the research in the area, The National Sleep Foundation recently revised their sleep recommendations for specific age groups and now recommends the following ranges:
  • Newborns (0-3 months): Sleep range narrowed to 14-17 hours each day (previously it was 12-18)
  • Infants (4-11 months): Sleep range widened two hours to 12-15 hours (previously it was 14-15)
  • Toddlers (1-2 years): Sleep range widened by one hour to 11-14 hours (previously it was 12-14)
  • Preschoolers (3-5): Sleep range widened by one hour to 10-13 hours (previously it was 11-13)
  • School age children (6-13): Sleep range widened by one hour to 9-11 hours (previously it was 10-11)
  • Teenagers (14-17): Sleep range widened by one hour to 8-10 hours (previously it was 8.5-9.5)
  • Younger adults (18-25): Sleep range is 7-9 hours (new age category)
  • Adults (26-64): Sleep range did not change and remains 7-9 hours
  • Older adults (65+): Sleep range is 7-8 hours (new age category)

We have all experienced the effects of the lack of good sleep on our daytime functioning, but these effects may have more profound implications for children with ASD. Research has shown that ASD children with sleep problems have lowered cognitive functions (particularly with verbal skills that typically require more effort and concentration on their part), have more difficulty with social skills and increased emotional distress, increased hyperactivity, and poorer motor control. These impairments in turn make it difficult for ASD children to benefit as much as they might from the schedule of interventions that often make up their day. Sleep problems in an individual child have implications for the entire family: studies indicate that the parents of children with autism sleep less, have poorer sleep quality, and wake up earlier than parents of neurotypical children.

I want to pause for a moment to acknowledge the obvious: Parents of children with ASD want their children to sleep well and in many cases have gone to great lengths and have made personal sacrifices to accommodate, let alone address, their child’s sleep difficulties. Sleep (along with eating and toileting) is behavior that parents can not directly control by physically manipulating or exerting their will on their child. There is a significant amount of stress involved in attempting to improve sleep, and parents need to feel supported rather than judged as they begin to make changes. I will be making some suggestions about how to support better sleep in the next few paragraphs, but acknowledge that sleep difficulties are rooted in problems with neurobehavioral regulation and, as such, are often challenging to alter.

While keeping this in mind, parents should know that there is encouraging evidence to support the idea that parental efforts at improving sleep can lead to very positive outcomes. Researchers at Vanderbilt University have been studying sleep disruption in children with ASD for over a decade and have found that educating and supporting parents in understanding sleep disruption was critical to improving sleep for their children, and that most families in the study were able to make long-term improvements with parent-implemented interventions (Malow, Adkins, Reynold, Weiss, Log, Fawkes, Katz, Goldman, Madduri, Hundley, & Clemons, Parent-Based Sleep Education for Children with Autism Spectrum Disorders, Journal of Autism and Developmental Disorders, 2014 Jan 44(1): 216-228).

The first step in addressing sleep problems is to discuss the issue with your child’s primary health care professional. This is an important step because your doctor can help rule out potential medical issues or determine whether a more specialized appointment is necessary (such as a sleep specialist, ENT, or a neurologist). Your primary care provider would also be the appropriate person to see in order to discuss whether medication or a supplement such as Melatonin would be a reasonable avenue to consider. Melatonin is a naturally occurring neurochemical that assists in regulating the sleep-wake cycle. Children with Autism Spectrum Disorders have been found to have abnormal Melatonin levels, particularly at night. Over twenty clinical studies have shown a significant improvement in sleep length and sleep latency for ASD children who were given Melatonin before bedtime, even at relatively small doses (1-3 mg.). Negative side effects have been described as “minimal”, although experts note that long-term effects deserve further investigation. (Rossignol DA, Frye RE. Melatonin in Autism Spectrum Disorders, Current Issues in Clinical Pharmacology, 2014; 9(4):326-34). Medications used to treat other ASD symptoms can sometimes affect sleep regulations and sharing information about this dynamic will be important for your pediatrician or psychiatrist as they work with you to find an optimal regimen.

Regardless of the cause or nature of sleep disruption, there are environmental and behavioral mechanisms that can be put in place to support sleep. While the initial effort required to implement some of these strategies may seem overwhelming, often substantial change can be seen within a relatively short period of time (two weeks is a commonly reported time frame for seeing improved response). One of my preferred resources for sleep intervention is the “Tool Kit” offered without cost by Autism Speaks. A tool-kit is also available for teen and young-adults: (http://www.autismspeaks.org/docs/sciencedocs/atn/sleep-tool-kit.pdf). Their research-based suggestions focus on the following strategy for tackling sleep problems:

1. Provide a Comfortable Sleep Setting: Think SENSORY issues at this stage. Is the room too hot, too cold, too bright, too dark (a dim night light is usually optimal)? Pay attention to trying to keep the room and the surrounding environment quiet. Some children benefit from increased sensory input such as weighted blankets.  Enlist the advise of your Occupational Therapist for suggestions about what alternations might best incorporate your child’s sensory profile.
2. Establish a Regular Bedtime Routine: A reasonable routine should be between 15-30 minutes before bedtime and followed primarily in your child’s bedroom (other than tasks that require the bathroom). The routine should be done in the same order each night. To the extent possible, it is important that all adults involved in putting the child to bed follow the same routine. The more consistently the routine is implemented, the more it will be useful in helping your child regulate to sleep.
   1. Tips for ensuring a successful bedtime routine:
      1. Consider the use of a visual schedule to help your child anticipate sleep. The Autism Speaks tool-kit has a variety of examples that can be modified depending on your child’s language abilities.
      2. Choose activities that are calming (listening to music, rocking, reading a book, a massage) rather than those that are stimulating. For example, if bathing is a stimulating rather than a relaxing activity for your child, move this activity to a time earlier in the day.

• Try as best as possible to keep bedtime and wake-time the same throughout the week.

1. Restrict the use of electronic equipment while a child is winding down at night as this can be emotionally and visually stimulating, and the light from the equipment may interfere with Melatonin production.
2. Try to create a “getting ready for sleep” environment across the household, including dimming lights, speaking in quieter tones, helping siblings and other family members understand the need to model self-regulation behaviors.

3. Teach your child to fall asleep alone: Many modern parents place some value on co-sleeping, which is not necessary wrong in itself. However, if a child is unable to get to sleep by him/herself they will not be able to independently get back to sleep after experiencing the normal periods of wake/sleep that occur throughout a night of sleep. One approach to teaching a child to sleep alone incorporates principles of graduated sleep training (e.g. increasing the distance between parent and child on a gradual basis as he/she learns to regulate to sleep). The Autism Speaks Toolkit also describes the use of a “Bedtime Pass” that helps to communicate rules and a system of reinforcement around staying in bed long enough to get to sleep.
4. Promote Daytime Behaviors: Regulate nap-times to end before 4:00 p.m. to ensure that a younger child is appropriately tired when bed-time rolls around. Avoid giving your child caffeine (watch the chocolate!) and sugar close to bedtime. Daytime exercise can make it easier to fall asleep and children who exercise tend to have deeper sleep. Children with a high need for sensory input may require more intense, “heavy” sensory-oriented activities throughout the day.

If you’d like to explore more detailed information about sleep in children with Autism Spectrum Disorders, the following resources may be helpful:

• Solving Sleep Problems in Children with Autism Spectrum Disorders: A Guide for Frazzled Families by Terry Katz & Beth Ann Malow, 2014.
• Sleep Better!: A Guide to Improving Sleep for Children with Special Needs, Revised Edition, by Mark Durand, Ph.D.
• The Autism Show Podcast: Dr. Beth Malow: Solving Autism Sleep Problems (http://autismshow.org/beth/).

As always, the providers at Alternative Behavior Strategies are here to support you. Feel free to reach out with further sleep questions if you have them.

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