Sleepless in Autism

By: Pinky Cuaycong

It is one of the most beautiful things in the world, the sight of a child sleeping the sleep of innocents.

In those few hours when the conscious mind voluntarily surrenders to rest, the whole world stops for the child and lets him be who he is. Young, carefree, untroubled, unburdened. Sleep lets him put his guard down. It removes his defenses from the world around him. And on those few hours of dormancy, he is simply a child. Sleep is the universe where there is no autism; it does not exist. Yet, for many children with autism, sleep is often the one thing they miss out on the most.

Our family was lucky for many years. For all of Alphonse’s aggression and self-injurious behaviors, we could always count on him to fall asleep at a reasonable time and stay asleep the whole night. We were always ran ragged during the day- exhausted, nervous, and tense- but nighttime was respite time, something to look forward to at the end of a miserably difficult day. As Alphonse grew older and the combination of age, education, exercise, and medication smoothened the edges of this high-strung, excitable child, sleep also became his respite time rather than just ours.

Child with Autism sleeping

Unfortunately, in the last three months, he has been having great difficulty going to sleep. When my husband and I discussed it today, we realized that Alphonse has had more sleepless episodes in the last three months than in the preceding three years combined. Last night, he was awake the whole night, falling into exhausted sleep only at five in the morning. Four hours later, he was up and about. A few weeks ago, he was awake for more than 36 hours, prancing and pacing throughout the night, sometimes laughing himself silly, sometimes shouting himself hoarse. A few days before that, he clocked in at four in the morning, beginning our day earlier than usual.

When he does not sleep, my husband and I do not sleep too. “Cannot sleep” is probably the right operative phrase. We watch him, keep him safe, keep him company, and attend to all his needs. On days following Alphonse’ sleepless nights, while he greets the world with chirpy smiles and bouncy Tigger jumps, his parents turn into robots on automatic pilot, with not much of an active intelligence. What gets us through the day, I really don’t know; we just do. Perhaps it’s the same thing that got us through more than five years of violence and aggression in our home- sheer grit.

On nights when Alphonse keeps us awake, I imagine a safe place for him inside our home. I imagine a room where the walls are safe, strong, and padded, where comfy furniture without hard edges allow him unrestricted movement without worry, where he has plenty of sturdy and safe toys to keep him company. As it is, our room (he shares our bedroom) is securely bolted from the inside to prevent him from wandering, some of the walls now have unsightly dents and marks from furniture slammed accidentally against them, and one wall of the wooden cabinets has a large hole where he kicked it from excitement.

Without this precious time for sleep, our house falls apart a little. And I think, so do we.

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"Pinky Cuaycong is Kittymama, full time mom of two boys (a 16-year-old high school junior and a 14-year-old with profound autism), part-time writer, and blogger. In Okasaneko Chronicles, she writes about her life’s deepest passions: her husband of 18 years, her teenage sons, autism advocacy, and Hello Kitty."