Wide Awake: Autism, Insomnia and Me

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.

What my clock read this morning when I woke up.

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:

From “Exercise and melatonin in humans: reciprocal benefits” in Journal of Pineal Research by Escames et al.

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.

References:

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

76 thoughts on “Wide Awake: Autism, Insomnia and Me”

  1. I need complete darkness to sleep like you, with one exception: a muted TV. Sometimes I fall asleep fairly well with the TV on, other times not so well. I also prefer it to be relatively quiet as well. Recently I’ve been getting night sweats, so I prefer my room to be cooler also. I have a tendency to wake up at an odd hour & not be able to fall back to sleep. It’s frustrating. I’m not sure if my sleep issues are a result of having [undiagnosed] Aspergers or having [diagnosed] Fibromyalgia. I suppose it could be a combination of the two. It’s very hard for me to sleep if the fibro is causing me a lot of pain. Chronic pain sufferers refer to it as painsomnia. Not fun at all, either way.

    Very good blog post. Thanks for sharing. 😀👍

    1. I’m really curious about the relationship between the physical symptoms of insomnia and AS, if there is one. It’s such a chicken and egg problem. It sounds like the added challenges of coping with chronic pain compound your situation in a miserable way. 😦

  2. I’ve had insomnia since I can remember, about 5. My mom has told me she’d come in to check on me before she went to bed and I’d still be awake 3 or so hours after my bedtime. I also wake up multiple times a night. I must, MUST have a fan running or I wake up or stay awake at the slightest noise and I’ve found that I can’t seem to tolerate caffeine anymore or anything with artificial flavourings/colours. I discovered this recently after a rare junk food binge brought on by anxiety – my normal and gentle night awakenings were replaced by heart palpitations and being unable to close my eyes for hours on end.
    I prefer not to take anything for my insomnia; I try to change my environment and lifestyle – but your daughter has a good point; it’s hard to know how much it effects you when you’ve never know any different!

    1. Do you need the fan running because it creates a consistent background noise? I’ve found that cutting back on sugar in my diet has helped smooth out my moods but I’m not sure if it’s had any overall effect on my sleep habits. I’m also very sensitive to caffeine.

      Like you, I try to adjust my environment and lifestyle rather than turning to medication. I feel like I’ve got such a delicate balance going on, disrupting it with meds might fix one problem and throw me into a tailspin in other areas. Which might not be true at all.

      1. Yes – that kind of background noise is soothing. I’m guessing my brain likes to have something, ONE THING, to focus on. Total quiet for sleeping unnerves me, makes me more awake, like my brain is expanding into the space. I can handle some sugar, like a homemade dessert, but after weeks of “experimenting” I’ve narrowed it down to products with artificial additives + sugar = craziness and insomnia.

        1. The one thing does seem important. Years ago I moved to a house out in the country and it was so quiet that the quiet literally kept me up the first few nights. That shouldn’t be possible!

          I’m going to start paying more attention to additives. I don’t each much packaged food and mostly cook from scratch but I think restaurant meals could have additives. Something else to look out for.

  3. Ahhh, yes, sleep. As a baby he was an awesome sleeper, could set a clock by him he was so regular. When he slept, nothing disturbed him. His record, which took place May 27, 2009 (the day after he graduated from high school) is 26 consecutive hours. (my bladder simply cannot comprehend this) I often think that many hours of sleep is indicative of just how much being at school wore him out. Seriously. Now he has a very irregular sleep pattern and doesn’t sleep nearly as long as he used to, more like 6-8 hours, compared to his old normal of 10-12. He takes it in stride very much as you do. When he is up, be it 2 p.m. or 2 a.m. he is engaged in his activities.

    1. 26 hours of sleep is impressive! I went through a period in my late teens where I slept a lot more than is normal but that’s just a distant memory. If I get 6 consecutive hours these days, I’m happy. The ability to take it in stride is a blessing. I know a lot of people spend their night waking hours worrying and fretting.

      1. Nope, Ted doesn’t fret at all. He has friends in almost every time zone and will get online and converse with someone irregardless of the time. Sleeping was the biggest problem in school, because he used it as a coping mechanism and his teachers would look at me and ask what I was going to do about his sleeping. There was nothing I could do. I simply could not make him fall asleep. We gave him melatonin, we took stuff out of his room, etc, but when I got really honest, I was powerless over his sleep. So we adapted. The teachers didn’t His classmates found him amusing in a positive way. He even inspired a skit in their senior follies called “Sleeping my way to Harvard.” 🙂 I hope you find good uses to your awake time, and you are absolutely right about exercise helping with sleep. Change what you can and make peace with what you can’t.

        1. It’s not surprising that your son used sleep as a coping mechanism. Often when I feel overwhelmed by a situation it makes me suddenly, incredibly sleepy. I love that you have a sense of humor and perspective about what must have been frustrating as a parent.

          And yes, I often use my awake time to think about things I want to write and to shape my ideas. 🙂

          1. I’ve never slept through the night either! At some point, my parents managed to teach me that as long as I stayed in bed (since they didn’t want a 5 year old wandering through the house at night/we had no heat and concrete floors so there wasn’t really any way on earth I would get out of bed at night in winter) and didn’t wake up my sister, it was fine. I think it was good that they taught me it isn’t a big deal how I sleep, but its just something different about me, because I never freaked out about it (my roommate at school was the worst the one or two nights that she had trouble sleeping and would stress out about it and make herself more and more tired), it never really bothered me much.

            But I find the sleep and ASD connection really interesting because all FIVE of those descriptions relate to me, and I’ve sometimes wondered why I am such an abnormal sleeper (and it is inconvenient when I have to share rooms with people because I can’t wander off as I would like).

            1. We were both lucky not to have “not sleeping is bad’ ingrained in us from childhood. That would turn a lifelong nuisance into a source of serious stress! Fortunately I’m married to a fellow insomniac so neither of us is bothered by the other’s odd sleep habits. My husband actually sleeps in shifts most nights, a few hours sleep, get and do something for a few hours, then sleep a few more hours. He’s super productive at 2 AM! 🙂

            2. (And I forgot to add this the first time)
              And sleeping as a coping mechanism… That definitely happened for me in college. Sometimes that would be the only way to avoid talking to my roommate would be to fall asleep (or sometimes, pretend I was asleep). Sometimes that would be the only way to get quiet time.

  4. 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.

    That is a fascinating piece of information. Why does humans’ natural circadian rhythm need continuous adjustment via environmental cues to adapt to Earth’s circadian rhythm? Science fiction worthy detail!;-)

    Great thorough post as usual! I am happy to say that for once this is a topic I can not relate to. I like your parents’ attitude. My parents had a similar attitude. Additionally, they did not care to avoid noise when my brother and I were sleeping but just went about their business relaxed and naturally… no ‘SSHHH!’ing or sneaking around nervously. I always thought that was why both my brother and I were not fussy sleepers because my cousins were (waking up easily, took time to fall asleep), and their parents were very considerate/afraid to wake them when they slept.

    My parents used to sometime send us to the cinema alone for a 4 hour cartoon movie session when we were small so they could get some private time together at home. I had the problem when the movies finished that my brother was snoring like a piglet, and I couldn’t wake him so we could go! I remember asking a man to help, and he held my brother in his feet and shook him upside down to wake him 🙂

    I may not even wake up if talked to and I answer – I can have a forced conversation without waking! I do wake up many times some nights for various reasons, but it doesn’t stress me and it is not usually hard to fall asleep again. I wish I could ‘hit the ground running at 5:00 AM with an energy level that seems to piss people off’! That sounds awesome.

    1. That’s exactly the question I asked myself when I discovered that little biological oddity.

      I bet being raised in a noisy household from birth does contribute to being able to sleep through anything. My husband comes from a large family and is the same way. Your story of your brother at the movies is hysterical. That’s some seriously deep sleeping!

      1. Precisely!

        Just came to think of something. While I don’t have any trouble falling asleep, I am not really trying either. Right now, for example, it is 4 am in the morning (I just didn’t go to bed yet and am still fresh). It is Saturday tomorrow, not a work day, and will be a daunting 40+ C over the weekend, so I figured I prefer the nights.

  5. Hello Fellow Insominiac! I spent most of my childhood watching midnight episodes of The Honeymooners, followed by I think it was 1 a.m. episodes of Star Trek! Then, I got up and went to school the next morning. I don’t know if my parents were immune to my staying awake, gave up on trying to put me to bed, or plain old didn’t care to notice. As an adult, nothing has really changed. It takes forever to fall asleep, if at all–and for me, melatonin has been a life saver in our house. I have two children that don’t sleep either, a 13 yr old and 8 yr. The 8 yr old in particular cannot sleep without the melatonin…well it is melatonin, bath, bedtime show, and then Mom laying down with him…in that order. If the anything is missing or the order changed sleepy time does not happen.

    I giggled at your hitting the ground running at 5 am, since I first read your post at 5:30 this morning 🙂 When hubby and I were first married it drove him bonkers that I was up and rambling on and on and on first thing in the morning. My brain is fully awake, and I used to tell him that was the best part of my day because no-one had pissed me off yet!

    1. I guess we grew up in a time when how much sleep kids got wasn’t a big deal? My parents’ biggest concern seemed to be that I wasn’t pestering them.

      Since you have experience with melatonin, I have to ask – is it ever prescribed for adults that you know of? I’ve read so many stories of it working wonders for children. It sounds like routine is as important for your son as the melatonin, though.

      My husband is also amazed (and sometimes annoyed) by my energy levels early in the morning. I can be a babbler too, if I wake up with an exciting thought. Hadn’t considered that it’s too early for anyone to have pissed me off, but that’s definitely true!

      1. Ha! Mine too were most interested in my not pestering them.

        The melatonin has worked wonders for me as well! So yes, it is definitely used for adults. I bought mine on Amazon, the fast melt tabs because the kids take it too, but it can be purchased as walmart or any natural foods store (but much more expensive)…I take 5mg nightly.

  6. I (well, both of us, I think) need a small air purifier going outside our door for the sound, and I need the ceiling fan on, both for the sound and the air motion. Even when the room is cool enough (another story–I need a pretty chilly room to comfortably fall asleep) I need to feel the sensation of moving air. An absolutely still-air room really bothers me.

    Flickering lights do me in as well. Channel surfing while I’m trying to sleep–argh. I’d start worrying that it would trigger a migraine, then that worry would become its own thing. Keyboard clicking from another room when I was trying to sleep was awful, too, never knowing how or when the pattern would change.

    1. I hadn’t thought about the air movement aspect but I do sleep much better with a window open, the point that I’ll leave the window open a couple of inches when it’s 30 degrees out. Still air can feel suffocating or something. The flickering light of a TV really stresses me out, to the point that I start to feel ragey if it doesn’t stop. This whole post is making me feel really high maintenance but it’s like basic nonnegotiable stuff for me.

  7. Thank you for your insight. My 7 year old grandson is an Aspie and has irregular sleep patterns. He taught himself to read at 2 and has entertained himself after dark in much the same way as you. He will on occassion sleep for 14 hours straight.What are your thought on this?mentioned.

    1. If his 14-hour nights are just occasional and they don’t seem to be interfering with other things, I think I’d let him be. He may need an extra long sleep occasionally to catch up if his sleep is generally irregular.

      I know that I sometimes need a long period of sleep to recover from stressful events. Last Friday I did a lot of stressful traveling and socializing. I slept awful Friday night and was miserable Saturday, but Saturday night I slept 13 hours and woke up feeling terrific. It might be worth noticing if he tends to sleep overly long after he’s had a stressful day. It may be his way of “resetting” his emotional balance.

      The aspie brain has some funky wiring!

      1. Thanks for the insight…HIS aspie brain also has a chemical additive complements of his birth mother’s use of crystal meth in the first 6 weeks of the pregnancy. So he has metal toxicity on top of all else. But he is a good kid, and I will have his mom keep a log and see if the sleep routine has a pattern. (They just moved away and I miss them a lot–my daughter adopted them but I have always lived with them til now.

          1. Thank you. My visits will most likely be via SKYPE–however that can be a bit overstimulating for him…so it will be infrequent. My hope once I get to my next destination is to be able to travel at will–a huge undertaking for me. (I tend to get lost–a lot) hence the full name of my blog…I don’t know where I’m going but I’m makingreatime…but time will tell. Thanks for your insight–it helps so much to be able to glimpse into a mind with such depth. Blessings,

  8. I am up almost every morning (except catch up days) by 3am. Today is was 12:30AM! But being a single Mom with 5 children (4 at home) I enjoy my “me time”!! I am actually grateful for it, since it is my opportunity to journal and read. Although, I should be cleaning. My teen daughter has sleep deprived seizures, so I can no longer clatter in the kitchen doing dishes.

    But I did not begin doing this until I married and stop working. This was 12 years ago, at age 30 years. Now, I am lucky if I get over 4 hours of sleep. The problem is, I am so exhausted by the end of the day I can not stay awake past 10pm. It would be heavenly if those 4 hours were uninterrupted too!! haha But I have learned to utilize and adjust.

    1. I know what you mean about being exhausted at the end of the day. Some nights I’m ready for bed at 8 PM. Not exactly the life of the party!

      It’s great that you’re able to put your quiet time to good use. Finding some me time with 5 children must be a huge challenge.

  9. haha, yes that was me last night! That meant waking up at midnight :/
    I always end up getting sleepy again just as I am supposed to get ready for work. I know your daughter was so correct when she said, maybe it is a problem and we just don’t know it. I am still in shock that this is an identity I can relate too! I am uninsured, so not sure how I could get a proper diagnosis. I will definitely be looking into it. It also explains how I allowed emotional and physical abuse for so long. Something else I will be looking into to! 🙂

    1. I’m so excited that this is opening up a whole new area of exploration for you! Diagnosis for adults is usually not covered under insurance and can be quite expensive. However, if you have an autism resource group in your state or area, you may be able to find some leads through them. Some universities do evaluations on a sliding scale-type basis, with supervised grad students conducting the testing. However, there are also many adults who are self-diagnosed (via research, reading, talking to/communicating with other autistic/asperger’s adults), mainly because of how expensive and difficult it is to get an evaluation as an adult.

  10. Sleep was a “special interest” of mine for awhile, and I learned a lot that I have applied to my life. I now set my alarm for the same time every morning, even on weekends. I too stop eating a few hours before bedtime. I have a white noise machine. In the summer I use a fan. Something that has been quite helpful is that I turn off bright screens and bright lights after 9pm. I’ve found that if I want to be online after that, I can use my iphone and change the setting to accessibility — white on black, so the screen is black with white writing. I read to fall asleep. It distracts me from perseverating, etc. But most important, I take magnesium with calcium an hour before sleep, and that has made a huge difference.

    The book Dreamland: Adventures in the Strange Science of Sleep, by David K. Randall, was fascinating to me. I learned that until the advent of artificial light, the world’s sleepers would sleep for about 4 hours, wake up naturally and do something else for a couple hours, and then go back to sleep. It’s called the first sleep and the second sleep. That’s how humans were for thousands of years. The idea of sleeping a solid 8 hours is a very new construct. So, when I do wake up in the middle of the night and don’t fall right back asleep, I no longer stress about it, and I can enjoy that quite time, usually reading.

    1. I just read somewhere else that magnesium has a calming effect, but I can’t remember what it was in relation to. I’d never heard that as a sleep aid. I’ll keep it in mind for when other people ask about sleep difficulties.

      Oh, I read that somewhere, about the first and second sleep! It was a comfort to me too and is how my husband sleeps more often than not. The nice thing about living with another insomniac is that neither of us stresses much about our unconventional sleep habits. And we take lots of naps. 🙂

      1. Yes! When completely in my own rhythm, I tend to go for first and second sleeps as well. It’s just that I stress out too much about all the demands made on my time that don’t fit that sleeping schedule. Somehow work and social obligations always seem to get in the way of my sleeping needs. Or maybe I’m just worrying too much, catastrophising and seeing problems where there actually are none. Maybe I should take a more realistic look at what kind of sleep I need and set up a routine accordingly.

        1. It is hard to sleep in shifts when you have a job schedule that requires waking up early, etc. I’ve noticed that when my husband can sleep on his own natural schedule, he’s a lot more productive and happy. When he has to get up early to meet a work schedule, he’ll end up really sleep deprived and stressed because it forces him to feel like he has to sleep a certain number of hours straight every night. I’m not sure what a good solution would be though, given that work schedules tend to be pretty inflexible.

  11. If you only had the foggiest idea of the trouble I have to go to just to get some sleep…

    Thing is, when a doctor reads my history, they are well inclined to wonder if the sleep difficulty has anything to do with the fact that I am autistic… or the astounding levels of abuse that I have suffered as a result of being born in the wrong generation. I think that such is a valid question that, sadly, normies are too stupid, ignorant, and invested in their ignorance, to seek a proper answer to.

  12. Earplugs are genius for me. Once I’m asleep, I sleep like a log and almost nothing can wake me up short of pain or high-pitched noises – hence why my alarm is a high-pitched beepbeepbeep. Until I fall asleep, however, the slightest intermittent or unexpected noise bounces me back to wakefulness.

    No joke: the jingling of the tags on the collar of my parents’ dog as it moved about at night once kept me up all night. And you know those commercials from about a decade ago about someone getting increasingly aggravated as a leaky tap keeps them up all night? Done that too.

    Earplugs are the only reason I get any sleep, living in the city as I do.

    1. I use earplugs occasionally to sleep, if I’m in a noisy environment or the neighbors are being unusually annoying. Do you find that they bother your ears? If I wear them all night, my ears hurt in the morning. Maybe I need to try a different kind?

      Also, I take my dog’s collar off at night because her tags would keep me up. Sometimes I wake up because she’s licking herself too loud. She likes to groom herself around 4 AM for some reason. She’s lucky she’s so cute.

      1. I used to have that problem (and also I was getting a lot of ear infections that I thought might be related to having something pressing on my ear canal all night every night), so I switched to wax earplugs that go on the outside of the ear. It can be a pain in the rear to get the seal right (they don’t work at all unless they form an airtight seal around your ear), but once I get it, I sleep beautifully w/o any ear pain.

          1. These things. They’re available from most drug stores (not necessarily that brand), and some types are made so they’re in-ear like the foam ones, while others are designed for outer-ear use. Swimming-style wax earplugs are good, too. Help?

  13. I can totally relate to all you are saying. Thank you for this post. Prior to reading this today: https://medium.com/matter/70c3d64ff221, I didn’t really classify myself as Asperger’s. Maybe I will not in the future too, as it seems there is a bunch of things wrong with all these classifications. BTW, I listen to music, podcasts and audiobooks in the night waiting for sleep.

  14. oh god, sleep. sleep is sooo precarious for me. i need quiet except for ambient noise from a fan, it needs to be cool (the fan helps with this), i need weight from 2 blankets and a sheet, i need 1-2 hours of minimal interaction and screen time before sleep, and i’ve found i sleep better with my boyfriend a lot of the time–even when he snores. i’ve often found that i get the best sleep in the early morning hours (4-6AM).

    even with all of the above, i still find myself waking at least 2x per night, often more. and i cannot function very well without good sleep. i’ve taken more sick days from work due to bouts of insomnia than for any other reason. benadryl helps, but it also make me groggy in the morning.

    1. I sleep best in the early morning hours if it’s a shift sleeping day. Sometimes I’m just up at 4 or 4:30 and that’s it for the night because I’m wide awake. I’ve been noticing that my sleep seems to come in cycles–a few normal nights, a few nights of shift sleeping, a few nights of waking up really early. And by ‘a few’ I mean anything from two to twenty. 😀

      Have you ever tried melatonin? It doesn’t have the drowsiness side effect that benadryl has.

      1. I have tried melatonin but it doesn’t have much effect on me. I am trying to stay away from all the chemical drugs as they are mostly toxic to the body. Raw foods, fasting and detoxing can definitely improve your sleep.

  15. I’ve always been up all night and when I was a teen, I REALLY was up all night. And sleep was a war in my house. My parents came down on me with nearly the same force they did my sister during her troubled years. Apparently not sleeping on a “normal” schedule is right up there with kicking puppies and robbing gas stations at gun point. When left alone, I prefer to cycle out my days on that 25-27 range. Sleep is still an issue. If I’m not on a “normal” schedule, even the other people who stay up all night criticise me for my “laziness”. It’s become a very bitter subject.

  16. I’m a 53 year old AS women, and I have pretty bad insomnia off and on. I’m going to try being more physically active during the day, as I spend many hours doing jigsaw puzzle, using iPad, etc.

  17. I wish that I had found this blog when it was more active. But I completely understand why the Author needs time for R&R. I have a relationship with someone who appears to be an Aspie. She definitely has real problems with insomnia and irregular sleep cycles. But she also talks about …. “I don’t like silence!”.

    Is there anyone else here who has this feeling … that Silence gives them a very uncomfortable feeling? How do you handle it?

    thanks,
    Pete, California

    1. Only around certain people. There are some people I know that it’s okay to be quiet for abnormally long periods. Just a normal part of conversation. And then with some people it’s that “awkward silence”.

      Um, or are you talking about having to have a box fan or something at night? My husband is like that, but it doesn’t take much noise to keep me up all night. It’s very awkward for us to share a bed at night. Me with all my blankets and him needing none. Him with his noisy fans, me needing quiet.

  18. I’m so glad I found this blog. I’m an almost 54 year old woman with Asperger’s, not diagnosed until I was 38. I have perimenopause and recurrent depression, and I’m in a depressive time now. Talk about a cocktail of messed up brain functioning and hormones. At any rate, I think I need to a) exercise more regularly, no matter how tired I feel and b) learn not to get so anxious and desperate about my insomnia, and to accept it as normal for me.

  19. So it’s not just me! 🙂

    My sleep cycle is really wierd. Some nights I will sleep okay for hours on end, other nights I’m tossing and turning until 3 or 4 AM. Sometimes I’ll go to bed at 9 and wake up at 6 or 7, other times I’m not sleepy till after midnight, even though I go to bed at a reasonable hour, and I don’t wake up till 8 or 9. Sometimes I will feel ready for bed at 8, then I’ll go to bed — and I won’t sleep all night.

    Like others here, I have to have it completely dark (even if it means putting a blanket or something over my eyes), I use a white noise machine, earplugs, many blankets and stuffed animals, a fan, my air conditioner is in my bedroom, and I open as many windows as I can (I need it cold, too.) Reading in bed is also a must (I thought I was the only one who read underneath my night light as a child — except I got in trouble for it!), and sometimes watching TV before bed helps me to get sleepy. It doesn’t help, though, that I have a cat who likes to wander around and around my bed, jump on and off it, claw the mattress, and climb on top of me just as I’m trying to sleep!

    Does anybody else feel like they have Restless Leg Syndrome? Sometimes, right when I’m about to sleep, my arms or legs (or both) start hurting, and I feel like I need to move them a lot before they finally wear themselves out and I can sleep. Sometimes this takes hours. It’s really annoying, and I often wonder why I do that.

  20. After years of wondering what was wrong with me and why I was “different”, I finally was diagnosed with Asperger’s. It was definitely an “a ha” moment that has helped me learn about myself. After another night of no sleep, I came across this article. I felt like it was written about me; especially “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)…”

  21. As usual past 1:30am being up though laying in bed in the dark my mind was wondering. I started to wonder if insomnia could be linked to my Asperger’s so I googled “Asperger’s and insomnia” which resulted in me reading this entry. First, thank you for posting your thoughts as I could relate and felt less insane. Growing up, i had difficulty sleeping and struggled with insomnia. Even with melatonin, I would stay awake though mentally exhausted. Like you, I would read past hours while everyone surrounding me (family and strangers in my city) were deep asleep. I admit, I used to stay up and finish an entire book. Once, I recall my dad coming into my room, it was 6am, time had fled by, I was still reading a book. I felt alarmed. I inquired what would happen as I had not slept at all. His response, “it won’t hurt you though may feel tired throughout the day”. In retrospect, I don’t think he took my insomnia as an issue.
    Like you, even in summer, I must sleep with a comforter. The more layers and weight, the better. My tricks to tell myself it is time for bedtime, I read a book or I do kenken, sudoku. Doing math or fixating on numbers seem to help me shut off other parts of my brain who cannot cease overworking. My mind is constantly wondering and trying to make sense of everything. I suppose it is why I am told I suffer anxiety though I have always been this way.
    Anyhow, I also wanted to add, I agree with you, I think that having a neurological disorder may be a factor affecting and increasing my inability to perceive and interpret sleep related environmental cues.

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