“Aleks struggled because we were in a new place, nothing was familiar, and he was too excited thinking about the fun he was having to be able to wind down at night. While we understood his struggles, something had to change or our vacation was going to have to end early.”
Read moreI thought teenagers wanted to sleep? Sleep deprivation never ends with autism
“Being sleep-deprived lowers the immune system and takes a toll on the body physically and emotionally. I never feel fully rested and have no idea what being fully rested would feel like.”
Read moreA Dad’s Data-Driven Quest to Solve His Son’s Sleep Issues
“We've also struggled to identify why he wakes up in the middle of the night with potential causes being: Too hot? Too cold? Something to do with circadian rhythms? Too light? Too noisy? The list is endless.”
Read moreTry, Try Again: The Medication Guessing Game for Sleep Finally Pays Off
“Moral of the story, don’t give up. There is probably something out there that will work for your child if you keep pushing for answers.”
Read moreSomehow Surviving on 5 Hours of Sleep: The Life of an Autism Mom
“I’ve woken up to the sound of dishes breaking, walls being kicked and punched, and Jacob yelling vulgarities at the top of his lungs. I would jump out of bed as if the house was on fire and run to find him in this very sad and scary state of mind.”
Read moreAutism: The Nightmare of Life Without Sleep
This month our blog focuses on the torment of sleep deprivation in individuals with severe autism, and their families
By Jill Escher
There are various ways to torture a person. There’s whipping, “the rack,” painful electric shocks, needles, beatings, and so many other horrific methods. But another classic torture device is less bloody but plenty damaging: sleep deprivation.
Humans need sleep much like they need food and water, it’s a physiological necessity for both mental and physical health. Chronic sleep deprivation can cause high blood pressure, diabetes, heart attack, heart failure or stroke. It increases the risk for obesity, depression, confusion, memory impairment, reduced immune system function, lower sex drive, and even psychotic episodes. Because sleep is vital the daily processes of DNA repair, lack of sleep leads to increased risk of cancer. Lack of sleep is a serious medical issue that can be ruinous.
So we should be concerned about the epidemic of sleep deprivation affecting individuals with severe autism and their families. It’s estimated that sleep disturbance affects 40-80% of children with autism. Desperate families seek all sorts of interventions, from behavioral “sleep hygiene” practices, to special beds, to supplements like melatonin, to pharmaceuticals like trazodone. But in many cases, nothing seems to regulate the haywire circadian rhythm of the child or adult with autism.
This month we shine a light on the autism insomnia crisis by sharing the lack-of-sleep stories of five autism families. I certainly can relate to all of them. While my 16 year-old ASD daughter has always been a pretty good sleeper, my 23 year-old ASD son, from the day he was born, was highly dysregulated and just could not sleep through the night. I would often awake to crashing sounds at 2am, finding him throwing furniture or whatnot around or outside the house, or to the sounds of water flowing in various sinks, or to the shaking of an energized jumping. I would often (barely) function on 3 or 4 hours of sleep a night and then spend several hours cleaning up whatever mess was made overnight. It was a torment for all of us.
For my son, though I was very reluctant to use medications initially, the drug trazodone, which we started with him a few years ago, helped immensely. Combined with other treatments he has, more or less, been able to sleep most nights. It’s a … dream come true.
But others are not so fortunate. Please look out for our NCSA blog this month and we un-celebrate sleeplessness in severe autism.
Jill Escher is president of National Council on Severe Autism.