Journeys with Autism

I’ve been reading lately about Asperger’s and sleep disorders. From what I can gather, the problems fall into two categories. Some Aspies can fall asleep without a lot of trouble, but wake up several times during the night. Other Aspies have great difficulty falling asleep, but few problems staying asleep. At any given time, an Aspie can have one difficulty or the other, or a combination of both.

My Life as an Insomniac
I’ve experienced both types of difficulties, but my biggest challenge has always been falling asleep. As a child, it took me 2-3 hours to fall asleep at night. I had all kinds of ways of passing the time. My favorite was to hide a small transistor radio under my pillow and listen to talk shows about baseball or hockey. I’d turn the volume down low so that my parents couldn’t hear. In the absence of a radio show, I’d create an elaborate fantasy in my mind about becoming the first female baseball player and pitching a perfect game in the World Series. (For details about this particular portion of my interior life, see my earlier post.)

Outside of baseball and hockey season, I’d run through all the songs from Mary Poppins or The Wizard of Oz in my mind. We had LPs of each, and I’d listened to them so many times that I could recreate them verbatim in my head. If I were still awake, I’d make up stories about being adopted by some all-American family, like The Brady Bunch. This particular pastime would generally put me to sleep.

In the midst of the radio shows, the musicals, and the hope for a TV family, there was a constant anxious undercurrent. The only way I can express it is to say that I was just plain afraid to fall asleep. Specifically, I was afraid to lose consciousness. As a child, I was sure it would hurt to drop from consciousness into sleep, rather like falling from a second-story window onto my head. I used to go around in circles, believing that the longer I stayed awake, the worse it would hurt to fall asleep. Of course, the fear would only increase the wakefulness, and the wakefulness would only increase the fear.

As an adolescent, the problem became worse. High school meant loads of homework, constant sensory overload, and an alarming increase in the dysfunctionality of my home environment. I’d routinely stay up studying until 3:00 or 4:00 in the morning. I don’t think I was really learning anything. I was just keeping myself awake by staring at print and taking notes. Of course, having to get up a few hours later for a 7:30 bus didn’t help my stress level at all. By the time I left home, I was already chronically and painfully insomniatic.

As a young adult, I struggled with this condition for the next ten years. Not only was I unable to fall asleep easily, but I also started waking up in the middle of the night and often had difficulty getting back to sleep. For a short time, I used over-the-counter sleep remedies, otherwise known as The Pills From Hell. They suppressed my REM sleep, so although I slept, I woke up the next morning stressed from not having dreamt. The stress created so much pain in my body that I continued taking the pills just to fall asleep, which led to a vicious cycle of increasing stress, increasing pain, and increasing insomnia. The cycle ended two weeks later, when I finally realized why my mother’s friends had gotten addicted to sedatives. Never sleeping ever again was better than the alternative, and thus my two-week foray into the land of sedative medication came to an abrupt and bitter end.

I continued to struggle until 1987, when I was a graduate student and went to UC Santa Cruz for a weeklong conference. After three terrible nights of not sleeping at all, I drove myself to the emergency room, signed myself in, and told the attending doctor that he had two choices: give me pills to help me sleep or hit me over the head with a hammer. He gave me the pills. They were tricyclic antidepressants called Amitryptiline, and he had used them himself when he’d come back from Viet Nam in a state of traumatized exhaustion. After taking the first one, he’d slept for two straight days.

That sounded good to me. So I took the first tablet at 8:00 that night, and the next thing I knew, it was 6:00 the next morning. I had fallen asleep easily, I had slept through the night, and for the first time in my life, I felt happy to wake up and start the day. My heart was open, the birds were singing, and I was connected with everyone and everything. I felt, for lack of a better word, normal. At least, a lot more normal. Okay, a little more normal, but in a major way: I understood why other people got out of bed and looked forward to the day.

Fast Forward to the Present: Fighting Sleep
I’ve taken the same medication for over twenty years, and I no longer suffer from chronic insomnia and its associated physical and mental pain. The medication I take is non-addictive and non-narcotic. It allows me to get gradually tired and sleepy, like a, um, normal person. That’s the good news.

The bad news is that I now resist that effect of the medication. I resist going to sleep. Some people have a very good nighttime ritual, with a routine bedtime and everything. Some people can’t wait to get under the covers. Not me.

I’m okay until about 10:00 at night. I’ve generally had a good day. I’ve worked out, eaten healthy food, drunk plenty of water, spent time with my family, gone out to work, and immersed myself in writing or singing or art work. I’ve taken very good care of myself. Then 10:00 pm comes, and I stumble off the path. Consciously and willfully.

It starts with turning on the TV and watching some detective show, like Law and Order or CSI:NY. While I’m watching the show, I start getting hungry. At least, that’s what I tell myself. But I’m not really hungry. It’s more like my head saying, “Enough with the healthy food. Enough with the exercise. Enough with taking care of yourself. Let loose. Eat just to feel the food in your mouth. Eat whatever you want. In fact, bring up a spoon and a bowl, and eat in front of the TV, so you can feel worse and worse about the poor dead people on the show, and you can eat more and more to feel better. Won’t that be fun?”

That’s how it starts. If I’m very lucky, I can extricate myself from the TV by 11:00. You’d think by that point I’d be ready to call it a day, but you would be wrong. I come downstairs, and then I begin this strange, repetitive, non-functional routine (ever heard of those?). It consists of first going to the pantry and eating, in succession, some spoonfuls of almond butter (hmm, smooth and crunchy and healthy), some spoonfuls of tahini (hmmm, smooth and smooth and healthy), and some spoonfuls of granola (yum, refined sugar and crunchy stuff, too). Then it’s time to check the freezer, where I eat, in succession, spoonfuls of each kind of soy ice cream, spoonfuls of any other kind of ice cream, and then some chocolate. If there happen to be any large chunky things in the ice cream, like pieces of Snickers bars or cookie dough, all the better. I can begin excavating.

By this point, it’s about 11:30, and I’m almost literally stumbling around because I’m so tired. But I am determined to stay awake. So I go through the whole routine again, telling myself that I’ll just eat one more thing, and then that will be enough. It never is, of course. I finally have to close the freezer door and admit defeat. Whatever it was that I was searching for in the kitchen simply isn’t there. I could have avoided the entire last hour and a half and just gone to sleep.

But I never do. I’m like a kid again, afraid to go to sleep, afraid to let go of the day, afraid to lose consciousness.

Up to now, this problem hasn’t felt insurmountable. Lately, though, as I get more in tune with how the Asperger’s affects me, this strange late-night TV-and-food ritual has begun to make me feel literally sick. I go to bed feeling congested and sick to my stomach, and I wake up sick to my stomach and not wanting to eat or drink a thing.

I’m not sure how to work out of this pattern. I’m beginning to see its cause, however. Going to sleep means that I have to put in my earplugs, close my eyes, and stop ordering my world. I have to stop tracking and translating all the visual and auditory chaos I work so hard to keep in order.

How do I stop working so hard? How do I turn off the hypervigilance, the need to scan my environment and notice all its details? It feels like it hurts to stop. And I’m afraid. What will happen to the world when I sleep? What will happen to me? Will the chaos swallow me up? Will I awaken to a world that is completely overwhelming? Will I be able to put it back together?

So I use food and the TV to zone out while staying awake. I’m not working quite so hard. After all, the TV is creating its own order, and the food is just sitting there, waiting to be eaten. But I’m still vigilant. I’m still working. And ultimately, I have to go to sleep, and it never gets any easier.

There must be a better way.

© 2009 by Rachel Cohen-Rottenberg