The Sleep Cycle | Organization for Autism Research

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Ah, Summer!

Typically known by many as a “break” from the rigor and routine of the school year. Whether or not you have school-age children in your home, our lives still revolve loosely around this schedule. Ever try planning a work meeting in August?

AAAHHHHH, Summer!!!!

For parents of those who happen to have Autism Spectrum Disorder, summer is the time to buckle down and work harder than ever before. Juggling house chores, work tasks, and keeping the kiddo on routine, calls for nothing short of super parenting strength.

While our son is a young teenager, one of our biggest challenges has been keeping his sleep schedule intact during the summer. Not only is the sun shining when bedtime rolls around, but there are usually more exciting activities happening during the warmer evening hours. We’re almost relieved that back-to-school season has rolled around!

We’ve often been questioned about our strict sleep schedule for Jake, as he goes to bed at 6pm and gets up at 6am. Even at nearly 15 years of age, he knows that when he’s tired he’s not a very nice guy. He knows his body requires brain rest, in addition to resting his muscles.

Fatigue often leads to shorter fuses, sharp tongues, and less patience in the strongest of adults. Imagine what it can do to our sensitive super heroes. Jake loses all ability to control his impulses when fatigued.

On well-rested days, he spends all of his energy trying to control himself. It’s exhausting, as his body needs to move constantly. Just trying to sit still and focus is draining for him. Tired Jake usually gets in trouble, too!

During this current period of great growth (puberty), Jake seems even more tired than usual. Even we were having trouble understanding how he could possibly be requiring more hours of rest. We wanted a sleep evaluation without undergoing an expensive sleep study in a strange and sterile setting.

Our solution: we gave Jake my FitBit. While we were slightly shocked by the fact that he takes nearly 100,000 steps per week, we were more fascinated by the sleep tracking. It’s not a perfect readout, but it does track deep sleep, REM sleep, light sleep, and wake hours.

We’ve discovered that Jake does typically get 8-10 hours of sleep nightly, but the other time in his room was a mystery. So we asked him (without violating teen boy privacy), what he does during those hours that register on the FitBit as “light sleep” or “awake” but during the time in his room. 

Jake was able to explain that while he may go to his room at 5:30 or 6pm for the night, he sometimes doesn’t sleep until 8 or 9pm. He said he enjoys those hours in the dark, under his heavy blanket with no input/stimulation in order to calm down. That’s totally OK!

We use his room in this way when he’s agitated and bordering on aggression, but we were not aware how important the “wind down” time is to his ability to actually fall asleep.

This isn’t to say that we never do evening activities.  We do gauge their importance very carefully. Would we push him to go sit through a big sporting event or concert because we want to go? Not likely. If there was a school event, speaking engagement or special visitor in town, yes. Then the fallout is worth the risk. 

After Jake has a night of poor or little sleep, the day after is a day of few expectations. Behaviors are very near the surface and our management must be on point.

While many are baffled by our “lights out while it’s still light out” routine, it’s a matter of our safety and his security. Don’t discount lack of sleep as a possible root of appetite, attitude and behavior troubles.

About the Author

Jenn Lynn Headshot

Jenn Lynn feels passionately about helping families touched by autism. She has extensive behavior training from her work in special education (in both public and private schools), ABA experience, and raising her own son on the spectrum. The former TV news producer is the founder and family navigator at Empowering Autism Caregivers, speaks and writes about her family’s own experiences in, and is the executive director of Upcounty Community Resources, Inc. 


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