This might be a new regular or occasional feature. How’s that for a commitment? There are a lot of little things that come up during the week that I’d like to share but they’re too small to make a proper post about. Instead, I’m going to roll them all up into one hot mess of a post on Mondays.
News from the Melatonin Front
I accidentally bought 3 mg melatonin tablets rather than my usual 5 mg tablets. Cue three nights of bizarre dreams before I realized my mistake (followed by a frantic midweek trip to Target). Yikes. Now I see why some people can’t take melatonin. I didn’t have nightmares but I did have some freaky dreams and woke up feeling like the night had been about a week long.
Research on Using the Internet as a Communication Medium
Amy Woodham, a masters student in psychology in the UK is doing a study on how women with Aspergers and High Functioning (ack!) Autism use the internet for communication. It’s a short, mostly multiple choice survey that took me about 15 minutes to complete. To participate, you need to be a female over the age of 18 with an official diagnosis of AS or HFA (I know that rules a bunch of you out, sorry). If you’re interested, you can find details here.
**Updated to add that you’re welcome to participate in the study if you are self-diagnosed/suspected AS/HFA. See the comments for the source of this additional information.
A-dar is an Actual Thing
I live next to an elementary school now. It has a giant playground with a forest of colorful plastic playground equipment, as playgrounds do these days. Last Tuesday when I took the dog out for our midday constitutional, I saw just one girl on the playground. She was walking around the paved play area, making loud vocalizations while looking at the numbers and shapes painted on the ground (for playing hopscotch and such). There were four adults nearby, chatting and paying no mind to girl’s unusual behavior.
“Wow,” I thought, “best recess ever.”
As I rounded the corner of the playground and headed out into the nearby field, I noticed another girl, hunched over at the end of a slide, scraping up and sifting through the bark mulch. Then a boy, kneeling under another slide, doing something in the dirt I couldn’t make out. Oh, and a second boy, sitting in the middle of yet another slide, flapping his hands, which were hidden in his shirt sleeves.
This seriously looked like the best recess ever to me. As I walked by the fence, feeling happy for these kids who were getting to whatever they damn well pleased on the playground, the flappy boy slid down the slide and ran over to the chain link fence to watch me. I waved. He licked the fence.
This would be even more fun if you all had things to share too. What’s going on with your week? Find anything new or exciting or interesting you want to tell everyone about? Could be ASD-related or not. I have no idea how this might work, except that we should do what makes us happy.
Last November I wrote about my insomnia and nightmares. Since then, I’ve been conducting some experiments. Here’s an update on what I’ve learned:
In early December I started taking melatonin and I immediately felt like I was sleeping better. To be certain I wasn’t just imagining that my sleep had improved, I conducted a 2-week sleep study on myself.
The Scientist hooked me up with an armband that monitors sleep quality. I wore it while I slept for two weeks, one week on the melatonin and one week off. Thanks to the software that came with the armband, here’s a graphic representation of how well I slept during each of the weeks:
I was surprised by how frequently my sleep is interrupted on any given night. There is one night out of each week that I got a long uninterrupted period of sleep. On most nights the longest period of continuous sleep is a couple of hours or ninety minutes. I knew that my sleep patterns were disrupted, but I didn’t know the problem was this bad.
I also found it interesting that I have to spend 9-10 hours in bed to get 8 hours of sleep.
So does the melatonin work? I averaged 25 minutes more sleep per night when I was taking it, which added up to an additional 3 hours of sleep for the week.
Since doing the sleep study two months ago, I’ve continued taking melatonin and it feels like my sleep has continued to improve. There are still nights where I only get 5 hours of sleep (last night, in fact) or I’m wide awake at 3:30 AM, but they’re less frequent. In general, I fall asleep more quickly. The melatonin creates a pleasant drowsiness that makes it easier to fall back asleep when I wake up during the night. Some days I feel a little sleepy in the morning, but that fades after I exercise, which I do first thing after getting out of bed.
If you’re considering taking melatonin as a sleep enhancer, there are some things you should know:
Melatonin makes you sleepy. Take it only at bedtime. I take 5 mg about 30 minutes before bed.
High doses of melatonin have been associated with increased depression and psychosis in people already suffering from these conditions. Also, women who are pregnant or trying to become pregnant, nursing mothers, and individuals with cancer, leukemia, lymphoma, multiple myeloma or Hodgkin’s disease should not take melatonin. It’s a good idea to consult with your doctor before starting the use of a melatonin supplement, especially if you are being treated for any other condition or taking any type of medication.
In the US, you can buy melatonin over-the-counter at stores that sell vitamins and supplements. It comes in 0.75 to 5 mg doses. Taking the smallest effective dose is safer.
Melatonin makes you feel drowsy and relaxed but not drugged, so you should still be able to easily wake if necessary, for example to respond to an emergency call from a family member.
It’s often recommended that you take melatonin every other day so you don’t inhibit natural production. (Personally, I think my natural production is already screwed beyond all hope and always has been, so I take it every day.)
Some people take melatonin for a few weeks then take a week off on the belief that it loses it’s effectiveness if taken continuously. I’ve been taking it for 5 months with only two weeks off (one due to illness and one for the sleep study). I haven’t seen a drop in effectiveness.
If you feel groggy in the morning, try reducing the dosage.
Some people experience nightmares when taking melatonin. (I’ve found that my nightmares have lessened–more on that in the next part).
Other side effects can include: mild headache, upset stomach, lower sex drive and depression. Again, reducing dosage can alleviate side effects. Most people don’t experience any side effects at a dosage of 1 mg.
Some people experience rebound insomnia when they stop taking melatonin. I stopped twice for about a week each time and didn’t feel like my insomnia was any worse than it had been before beginning the melatonin. One way to avoid potential rebound insomnia is to taper off, using lower dosages over 1-2 weeks if you decide you no longer need to take it.
My Nightmare Journal
When I wrote about nightmares, I suspected that they were connected to unprocessed bouts of anxiety. To identify trigger events, I started a log of my nightmares along with some details like possible triggers and whether I’d felt like I processed the triggering event. My goal was to become more aware of triggers and spend time working through them during my waking hours rather than letting my sleeping brain get creative with them.
According to my log, here is # of nights that I had nightmares each month:
Nov 15th-30th: 4 nights
December: 10 nights
January: 3 nights
February: 1 night
March: 0 nights
April : 0 nights
I know what you’re thinking: You did it! You learned to identify your triggers and process your anxiety!
Well, no. I tried that all through December and failed miserably. Then in January, I said “fuck you, anxiety” and I wrote this. And hey, the nightmares disappeared!
Two things seem to be at work here. First, melatonin helps me sleep more deeply, which makes my dreams harder to remember and less vivid. Of the 14 nightmares I had after starting on the melatonin, I rated 6 mild and 2 moderate. That alone is a relief.
The other thing that’s happening? I’ve become autistic in my sleep! On January 23rd, I got my flap back in a dream. After that, I had only 2 nightmares and 1 of them didn’t fit my typical nightmare profile at all. I’ve started dreaming in an entirely different way.
In my dreams now, I often tell people that I’m autistic or consciously think of myself of as autistic. That’s completely new. Twice, when it seemed like someone was going to attack me, setting off a typical nightmare scenario in which I had to physically defend myself, the police showed up and took the threatening person away! That’s never happened before. Another time, I was lost and couldn’t find my new (in the dream) apartment. I told some people who worked in the building that I was autistic and couldn’t remember where I lived and they all offered to help me. That never happens in my dreams either.
This is really exciting. I feel like the way I’m thinking about myself and my relationship with the world around me is changing in a profound way. The changes to my dream life are concrete evidence of this.
That’s not to say I don’t have any disturbing dreams. I have plenty. I dream that I’m late for important events. That I need to call 911 but no one answers or the phone doesn’t work. That I need to run but my legs don’t work. That I’m blind. That I’m in school but don’t know my class schedule. That I have a baby but keep forgetting to care for it.
I also still have weird, inexplicable dreams. That I’m playing golf, but in the opposite direction of everyone else on the course. That I’ve accidentally rubbed the ink from my tattoo off and when I check it in the mirror I notice that I’m also pregnant.
All of those dreams are unsettling, but they aren’t nightmares. I don’t wake up sweating with my heart pounding out of my chest. I don’t cry myself awake. I don’t startle awake because the dream has become so intensely physically painful that I can’t stand it anymore. I don’t spend most of the next day trying to forget frightening images. I’m not reluctant to go to sleep the next night.
I’m okay with having occasionally unpleasant dreams, as long as the really bad nightmares stay away. Will they? Who knows. I’m in a fairly stressful period right now, one that would have typically triggered a nightmare cycle in the past. So far, nothing.
Like a lot of what I experience because of Asperger’s, until I started reading about insomnia, I didn’t realize that I’ve suffered from it on and off since I was a child.
Apparently, I’ve always had slightly abnormal sleeping habits. Sometimes it takes me a long time to fall asleep. Some nights I wake up a half dozen times; others (like today) I wake up at 3:00 AM feeling like it’s the middle of the afternoon. I can hit the ground running at 5:00 AM with an energy level that seems to piss people off.
In more technical terms, I have classic signs of autism-related insomnia:
prolonged sleep latency (time to fall asleep)
reduced sleep efficiency (decreased time asleep/time in bed)
reduced total sleep time
reduced sleep duration and continuity
night awakening exemplified by of long periods of time awake1
I was shocked to learn that the prevalence of insomnia in children with ASD is 40% to 80%.2 When you read about typical symptoms of autism and Asperger’s, sleep disturbance is not only missing from the core list of diagnostic symptoms, it’s rarely mentioned at all.
A Budding Insomniac
My parents adopted a benign disinterest when it came to my sleep habits. They put me in bed at eight o’clock and the rest was up to me. I’d make multiple trips to the bathroom for a drink of water or to take one last pee (three or four or more times) but as long I didn’t bother my parents, they didn’t make a fuss about whether I was actually sleeping.
I had a nightlight beside my bed and most nights I’d hang over the side of the bed, reading until I felt tired. Before I was old enough to read, I would sit at the top of the steps and listen to what was going on downstairs to pass the time until I felt tired. In my teens I got a portable black and white TV for my birthday and I’d watch TV, using earphones so I wouldn’t get caught.
I think my parents knew about these habits–they occasionally pointed out that I’d go blind if I kept up my “reading in the dark” and more than once they shooed me back to bed from the bottom of the steps. On an average night, though, my parents’ bedside lights had been turned off by the time I made my last couple of trips to the bathroom.
When I woke in the night, which happened most nights, I’d call my dad and he would lie down in my bed while I went to the bathroom. I’m not sure what purpose this served except that I remember being a little afraid of the dark after walking into a wall and getting a bloody nose one night. I guess it was reassuring to know that if I did it again, at least my dad would be there to hand me some tissues.
My parents’ laissez-faire attitude toward my sleep problems taught me two things: (1) it’s not a big deal and (2) you’re responsible for putting yourself to sleep. The second part sounds a bit harsh, but because they never made an issue out of when or how much I was actually sleeping, it never felt that way. A little lonely perhaps, but I also liked those few hours at night when everyone else was asleep and the house was quiet. I got to indulge in my special interest (reading) and that was calming, which eventually lulled me to sleep.
Granted, if I’d been destructive or intent on going out to roam the neighborhood, this strategy wouldn’t have worked.
What Works for Me
As an adult I’ve learned that having the right sleep conditions makes a big difference for me. Some things that help me sleep better:
1. Plenty of exercise during the day. I need to be physically tired to sleep well so getting in at least an hour of walking, running and/or swimming every day is essential.
2. Heavy blankets. The slight pressure of a heavy comforter and blankets relaxes me. If I only have a sheet or light blanket, I’ll wake up repeatedly.
3. A cool room. I tend to overheat when I sleep. I’m not sure if this is Aspergers-related, but if the room is even slightly warm, I’ll wake up sweating.
4. Comfortable clothes. As a kid I wore snug fitting pajamas. I still can’t sleep in anything that’s too loose, like a nightgown, because I end up feeling like it’s strangling me the first time I turn over.
5. Familiar surroundings. It’s much easier to relax when I’m in a familiar environment. If I go on vacation or move to a new place, it takes me a few days to “learn” to sleep there because my brain needs to catalog the unfamiliar sounds and smells.
6. A quiet environment or consistent noise. I need either total quiet or a consistent natural noise (wind, waves, steady traffic) to fall asleep. Something like intermittent voices, a radio or a television–even one playing in the apartment above or below me or in an adjoining hotel room–will keep me awake until it stops. In fact, I’ll usually be awake long after it stops because of the anxiety it generates.
7. A dark room. I can’t sleep unless the room is completely dark. Light shining in my room through a window or under/around a door will keep me up. The flashing light of a muted television drives me nuts.
8. Reading (or enjoying a special interest) before bed. Reading has been one of my special interests since childhood. Like any special interest, it distracts and calms me. I think it’s also become a sleep cue. When I pick up a book in bed, my brain starts sending out sleep signals to my body. It usually only takes 15-20 minutes of reading before I start to feel myself drifting off.
9. A light dinner and no snacks after dinner. I fall asleep faster and sleep better if I have a low-fat, low-sugar dinner and give myself at least a few hours to digest it before going to bed
Those are the things that I’ve discovered over the years work for me. I’d love to hear from others on the spectrum who’ve discovered tricks for getting to sleep or staying asleep.
Recently I was talking with my daughter about my sleep habits and she asked why I don’t try to resolve my insomnia. I told her that it doesn’t bother me–I use my middle-of-the-night time to read or think–or impact my daily life. Her response was, “Maybe it does impact you and you don’t realize it because you’re so used to it.” There’s a lot of wisdom in that statement. Something to think about, for sure.
(Unless you’re a geek like me, you can safely stop reading here.)
A Little Geekery About Melatonin and Circadian Rhythm to Wrap this Up
There are a few theories about why so many people with ASD have sleep problems. One of the most prevalent theories points to abnormal melatonin levels.2 Consequently, many children with ASD-related insomnia are given melatonin to induce more regular sleep habits. From what I’ve read anecdotally, this works well for many children and results in unacceptable side effects for some.
Another, lesser-known theory that caught my attention suggests that neurodevelopmental disorders increase the likelihood of sleep disturbances due to an inability to perceive and interpret sleep-related environmental cues.3 This is obviously far more difficult to measure and quantify in a lab than melatonin levels (which are easily measured in blood plasma). But it got me digging for more details because so much of my Asperger’s seems to trace back to the dysfunctional processing and filtering of my environment.
Caution: amateur scientist at play: I learned that our circadian rhythm (the internal clock responsible for, among other things, when we sleep) relies on external inputs to regulate sleep. The natural light-darkness cycle is the primary input, but our circadian rhythm can also be affected by our rest/activity schedule, mealtimes and social interaction. All of these inputs pass through a “central pacemaker” in the brain, which “outputs” various hormones that act as signals to the rest of the body and regulate the sleep-wake cycle.
Here’s a nifty graphic showing the “input” and “outputs” of the human circadian system4:
The really interesting part is that the body can’t maintain an accurate 24-hour circadian rhythm without the input of environmental cues. Our natural circadian rhythm, in the absence of environmental cues, is 25-27 hours. Whoa!
Perhaps dysfunctional processing of one or more circadian inputs throws off the circadian rhythm, leading to the abnormal levels of melatonin (a key output) found in many people with ASD.
The dysfunctional processing theory would explain why many of the things I do to help me sleep better qualify as circadian inputs: exercise, consistent activity cues around bedtime, no eating close to bedtime, and a dark room. Over the years I’ve developed inputs that tell my body loud and clear: calm down and go to sleep.
It doesn’t always work but I have a feeling things could be a lot worse.
1Goldman, Suzanne et al. “Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence” J. Autism Dev Disord, 2012, (42) 531-538.
2Souders MC; Mason TBA; Valladares O; Bucan M; Levy SE; Mandell DS; Weaver TE; Pinto-Martin D. Sleep behaviors and sleep quality in children with autism spectrum disorders. SLEEP 2009;32(12):1566-1578.
3Williams, P. Gail et al. “Sleep problems in children with autism” J. Sleep Res. (2004) 13, 265–268.
4Escames, G., Ozturk, G., Baño-Otálora, B., Pozo, M. J., Madrid, J. A., Reiter, R. J., Serrano, E., Concepción, M. and Acuña-Castroviejo, D. (2012), Exercise and melatonin in humans: reciprocal benefits. Journal of Pineal Research, 52: 1–11. doi: 10.1111/j.1600-079X.2011.00924.x