“Goodnight, Jack,” I whisper gently as I crack his bedroom door.
“Mommy will leave the door open?” he asks anxiously.
“Sure, honey,” I open the door a little more. “Goodnight. I love you and I’ll see you in the morning.”
Restless, Jack begins to sing “Life is a Highway,” a song he finds calming, while he rocks methodically in his room.
I walk downstairs, brew a cup of hot tea, and sit at my computer, fingers poised over the keyboard ready to type when Jack walks downstairs, turns into the kitchen, opens a box of dried pasta from the pantry, and dumps its contents on the floor.
“Jack,” I say a little too sharply. “It is time to go to bed. Please go back upstairs.”
His eyes well with tears, “I am not sleepy mommy. Please I don’t want to go to bed.” Tears fall down his sweet face. I am so proud of his communication, the way he puts words to his emotions and conveys them with the purest sincerity. I also feel horribly guilt-ridden and want to kick myself for making him feel less than enough. I reach out for him, hold him, and say, “It’s ok, Jack. You sit down here with me. I love you and it’s ok.”
Jack has come a long way in the past four years, but sleep continues to be a struggle for him. One of the things that has helped us through the long, dark days of sleep deprivation is understanding why Jack struggles to sleep. Though research on the subject is in its infancy, studies have shown that as many as 80% of children on the spectrum struggle with sleep, and issues such as abnormal amounts of melatonin, anxiety, and difficulties interpreting sleep-related environmental cues may be the culprits.
Author Cynthia Kim provides an excellent summary of some of the top studies on her blog Musings of an Aspie:
There are a few theories about why so many people with ASD have sleep problems. One of the most prevalent theories points to abnormal melatonin levels.1 Consequently, many children with ASD-related insomnia are given melatonin to induce more regular sleep habits. From what I’ve read anecdotally, this works well for many children and results in unacceptable side effects for some.
Another, lesser-known theory that caught my attention suggests that neurodevelopmental disorders increase the likelihood of sleep disturbances due to an inability to perceive and interpret sleep-related environmental cues.2 This is obviously far more difficult to measure and quantify in a lab than melatonin levels (which are easily measured in blood plasma). But it got me digging for more details because so much of my Asperger’s seems to trace back to the dysfunctional processing and filtering of my environment.
Caution: amateur scientist at play: I learned that our circadian rhythm (the internal clock responsible for, among other things, when we sleep) relies on external inputs to regulate sleep. The natural light-darkness cycle is the primary input, but our circadian rhythm can also be affected by our rest/activity schedule, mealtimes and social interaction. All of these inputs pass through a “central pacemaker” in the brain, which “outputs” various hormones that act as signals to the rest of the body and regulate the sleep-wake cycle.
The really interesting part is that the body can’t maintain an accurate 24-hour circadian rhythm without the input of environmental cues. Our natural circadian rhythm, in the absence of environmental cues, is 25-27 hours. Whoa!
Perhaps dysfunctional processing of one or more circadian inputs throws off the circadian rhythm, leading to the abnormal levels of melatonin (a key output) found in many people with ASD.
The dysfunctional processing theory would explain why many of the things I do to help me sleep better qualify as circadian inputs: exercise, consistent activity cues around bedtime, no eating close to bedtime, and a dark room. Over the years I’ve developed inputs that tell my body loud and clear: calm down and go to sleep.
1 Souders MC; Mason TBA; Valladares O; Bucan M; Levy SE; Mandell DS; Weaver TE; Pinto-Martin D. Sleep behaviors and sleep quality in children with autism spectrum disorders. SLEEP 2009;32(12):1566-1578.
2 Williams, P. Gail et al. “Sleep problems in children with autism” J. Sleep Res. (2004) 13, 265–268.
I am no scientist either, but my observations of Jack over the years have told me that in addition to being anxious, requiring a tremendous amount of physical activity, and feeling overwhelmed by his environment, he also is unable to “shut off” his brain. It is working so fast, constantly seeking and absorbing new information that he can’t calm down enough to fall asleep. And, as our family settles in to sleep each night, he feels great anxiety about the pressure to stop the wheels turning in his mind, which in turn makes them spin even faster.
We suspect sleep troubles will follow Jack throughout his life; however, as Jack becomes more communicative, he is better able to express his sleep struggles (as noted earlier in this post), which is such a blessing. Understanding why sleep is so difficult for him helps us to remember that he is an extraordinary little boy whose mind was created as it is for a reason.
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Want to read more posts from the Sleepless Series? Click on the links below!
Post 1 – Encouragement for the Restless Heart
Post 2 – Sleepless in Atlanta
Post 4 – Understanding Sleep Deprivation
Post 5 – Sleepless Series Finale: Peace