Autism: 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.