Sunday’s Weekend Edition had an interview with Arianna Huffington about her new book, The Sleep Revolution: Transforming Your Life, One Night at a Time, which reminded me of a post I’ve been meaning to write about sleep.
Or as it were, sleeplessness.
Martin’s early autism was marked by profound inability to sleep. He took an hour or more (sometimes up to three hours) to fall asleep and managed only a few hours before waking again for long stretches, like from 1:00-5:00 am, and then, maybe, sleeping another couple hours. When Martin was awake, I was awake: He yelled and cried, climbed out of crib or bed, and usually needed physical restraint to rest, or for any hope of returning to sleep. (A weighted blanket made no difference.) For more than a year, I survived on as little as two hours’ sleep per night, and considered six hours a luxury. When I did sleep, it was often on Martin’s bedroom floor, or contorted around his body in a single bed, or upright in the chair next to him. I drafted a celebratory post when I could finally lie in my bed even though he was awake, and again the night that I lay awake in bed because I finally wasn’t exhausted.
I’ve said this before, and I believe I will say it many times again: Sleeplessness makes autism so much the worse. Autism is emotional turmoil. Adrian and I have had to fight the system to seek recovery for Martin. I endure constant guilt about whether my own actions contributed to Martin’s condition. I’ve given up on having a second child, and at times I questioned whether my only child would ever live independently. All of that notwithstanding, the single greatest challenge of Martin’s autism, for me, has been sleeplessness. I understand why sleep deprivation is considered a form of torture. When you’ve had only 20 hours’ sleep over an entire week, nothing makes sense. During the most challenging, jittery months, I had to avoid sitting down during the day, because I might fall asleep, wherever I was.
Even when Martin became a better sleeper, I regret to report, I continued to squeak by with too little rest, juggling writing, autism recovery, the bad nights Martin still sometimes had, and as close to a healthy a marriage as I could muster.
Now, three or four years after the Great Sleeplessness, I make an effort to get at least seven hours’ sleep every night, and eight full hours as often as possible. I’m doing pretty well. But I know that my health still shows the effects of having gone so long without sufficient rest. Before Martin developed autism, I caught two colds a year, one in the winter and one in the summer, and other than that rarely was sick. Since the Great Sleeplessness, I’ve endured as many as four major illnesses per year, despite eating a cleaner diet than ever. Nowadays when I feel “something coming on,” I can’t assume that if I take it easy for a few days and lay off the gym, I’ll be fine. “Something coming on” now means that I’m going to be effectively non-functioning. That’s what happened a few months ago, in January: On a Saturday afternoon, I felt vaguely unwell. By midday Sunday, I was coughing uncontrollably. I had to cancel a Monday afternoon flight to California and ask my law partner to cover the mediation I had been scheduled to attend; from Monday afternoon, when Samara arrived (thank goodness, she had been scheduled to come and care for Martin while I was in California) until Thursday, when Samara went home, I stayed in bed. After that, I was able to rise and get through the day, but I remained out of sorts, with a persistent dry cough, more than a week later—at which time a chest x-ray showed I didn’t have pneumonia, and the doctor asked me to please, please consider antibiotics. I suppose I’ve become too reluctant to use pharmaceuticals.
When I was 21 and living in India, I caught dysentery and quickly dropped from 110 pounds (those were the days) to 95 pounds (bad idea!). I’m 5’6″, and it took months for my weight to cross back into triple digits. I also started feeling cold, almost all the time. I wore extra sweaters and slept under piles of quilts. As I recollect, the cold feeling, which was ignited by being underweight, stuck with me four or five years before fading. I’m hoping for something similar now. Constant exhaustion weakened my immune system. Four or five years of taking care of myself—fingers crossed!—should just about alleviate the issue. Check back with me in 2018.
For now, I am done with sleeplessness. I hate sleeplessness. I hate sleeplessness all the more for these points:
- Chronic fatigue has imposed a heavy burden on my well-being. If this is what happened to my body, what did sleeplessness do to Martin, who was a growing toddler? Moments like these, I am so very thankful to understand that autism is medical, and to have found biomed as a way to restore Martin’s health, and mine.
- For children and adults on the spectrum whose symptoms are more severe than Martin’s, or whose health doesn’t improve with interventions, this kind of sleeplessness may persist for years. Years. And the same can be said for their parents/care-givers. Years. Remember the study that found that mothers of children on the spectrum can suffer damage comparable to combat stress? I think I know a big reason why that happens.
Oh, dear. I feel something coming on again, and this time it’s snark:
Tell me again why “autism is an important part of neurodiversity” and we “shouldn’t be trying to cure autism”?
I simply love your blog. I make my biomed reluctant husband read it as well hoping someday he will be an active participant(in mind at least if not physically). My son is 6 yrs old and still an ATEC in mid 60s. I am hopeful someday recovery is possible for us as well
Thank you for loving my blog! Recovery is possible for your son. It is. I hear from a lot of parents who have biomed-reluctant partners—I believe you’ve just coined a new term, “biomed reluctant”; look for me to steal it in future posts—and I know it makes your struggle that much harder. Adrian was never biomed-reluctant, but he was biomed-skeptical, until we started to see the results, which fortunately came very fast in the first few months. Maybe when your son has his first big breakthrough, your husband will start to come around. Please hang in there, and stay in touch.
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