Last updated on November 26, 2023
Podcast Episode 0033; Season 03, Episode 05; November 12, 2019
Getting to sleep and staying asleep are difficult for me and many autistics. Our daughters also struggle to fall asleep; they don’t remain asleep, either. We’ve tried melatonin, relaxation techniques, and quiet bedtime routines. A parent asked me for advice, but I’m still trying to find my own solution to the challenges of sleep.
Transcript (lightly edited)
Scott: Hello, and welcome to The Autistic Me Podcast. Hi, I’m Christopher Scott Wyatt speaking as The Autistic Me.
A parent emailed and asked how well I sleep. I believe that’s a common question among parents and caregivers of autistics. I also know that autistic adults with whom I communicate share my frustrations with the nighttime and sleep.
[00:00:35] Unfortunately, my answer to. “How well do you sleep?” is not what the parent wanted to hear.
I do not and have not ever slept well.
My mother can verify that I did not sleep well as an infant, toddler, child, young adult, et cetera. I have struggled with sleep my entire life and I have tried every solution proposed by friends, family, and experts.
[00:01:05] I can go through those and explain that none of them worked and why I continued to try. Sleep is essential, obviously, for working a normal job, eight to five or nine to five, in the business place. It is also
essential for someone like myself who teaches, even though the schedule might not be eight to five. It still helps to be awake and ready to function no matter when your classes are scheduled during the day or early evening. Without sleep, you tend to be easily agitated and more on edge.
[00:01:43] The lack of sleep can exacerbate sensory overload. It certainly affects someone’s mood, and I know it affects my ability to concentrate and work on problems.
So, knowing that I have never slept well, I have always wanted to try various suggestions to find that magical solution. I don’t clearly recall all of the things attempted as a child and young adult.
[00:02:15] I do know that I would read or listen to the radio well into the night in junior high and high school. When I had access to a computer at home, I would use the computer and write. I have also frequently sat at a desk with a pencil and paper to write late into the night. Or even [when] I wake up during the night, I will sometimes go back to writing.
[00:02:39] In fact, recently I wrote a ten-page story based on a suggestion of our six-year-old. And I did that between midnight and two or three in the morning. This has always been a problem for me and, unfortunately, I see this same insomnia in our youngest daughter, the six-year-old. She does struggle to stay asleep even if she falls asleep on time.
[00:03:04] For me, the battle has been both getting to sleep and staying asleep.
I am a light sleeper and, unfortunately, that means traffic noise and, locally, the noise of trains will awaken me. Growing up, I could hear the trains in our hometown of Ivanhoe, California. And before that we lived in Bakersfield. And again, we were near a freeway and a rail line, so I could hear those.
[00:03:30] I know that most recently we lived in Western Pennsylvania and the rail line was at least five miles away — and I still heard it. More interestingly, I could also feel it, which I know annoys my wife quite
a bit. Our Western PA home also ended up near a fracking site, and a fracking well causes vibrations and a low hum and that would affect my sleep.
[00:03:56] It was quite loud at some times, and because our foundation and basement walls were concrete, they would vibrate at a particular frequency and I could feel that throughout the night.
I don’t know why things seem worse at night. It might be because there’s less white noise and other noise around.
[00:04:19] But, definitely, at night, the sounds from the fracking, road noise, trains, airplanes and other things, do seem much louder to me, and I know that that’s a common perception by all humans. So, as we have less input, the input we do have seems exaggerated.
Locally, now that we live in Texas, the trains at night are a serious problem for me.
[00:04:47] The train is approximately a mile and a half away, and yet the horn and the sounds of the crossing gates and other safety issues also add to the noise of the running train. So, we have the horn being blasted in the required safety pattern, which is a number of long and short in sounds to warn that they are approaching the track crossing.
[00:05:13] The trains are very long. My oldest daughter and I have counted well over 120 cars on some of the trains. They also frequently have six or more engines. These are very large trains, hauling limestone, auto parts, steel rails, and other heavy equipment. And so the vibration seems all the more exaggerated.
[00:05:38] At night, I will wake up to the sound of the horns and I will sometimes wake up to the sounds of the nearby expressway. And again, when I say nearby, I don’t mean that we live next to the tollway and
expressway. It is a distance away. But it’s close enough that it bothers me.
This leads back to the question of what have I tried to overcome the challenges, both going to sleep and staying asleep.
[00:06:01] I have tried melatonin and other medications prescribed by doctors. The melatonin was over the counter, the other medications have been prescriptions. Those did not work. I continued to struggle staying asleep, even if I could fall asleep.
[00:06:23] I have found that painkillers for my back and other challenges that I have, including the shoulder pain and neck pain, the medications, the painkillers, can sometimes help me get to sleep… because the pain is intense.
I do have a pinched nerve in my lower back. I do have scoliosis. I also have Erb–Duchenne palsy, which causes some pain in my upper brachial plexus area.
[00:06:50] So, painkillers can help, especially the acetaminophen PM, which is Tylenol PM.
But, I don’t remain asleep with those medications.
Staying asleep.
I have tried white noise. I have tried music, particularly classical music. I have tried nature sounds over the years. I developed the habit of listening to old time radio shows, which helps create just enough white noise and ambient sounds that it’s like daytime and I can sleep a little bit better.
[00:07:22] More recently, I have tried podcasts and audio books, but I find that I want to follow the audio book, so probably not the best choice as I want to know how a chapter ends.
I have tried reading again, but reading is not as effective as I might hope. I don’t find myself falling asleep as my wife might, or my children.
[00:07:44] Most people read and get drowsy, as where I read and I want to keep reading until I finish. And I don’t know if that’s common or not, but clearly not a good coping strategy. If you have problems getting to
sleep and staying asleep, anything that not only requires attention, but actually heightens your attention, is not a good approach.
[00:08:04] I currently try to exercise both in the mornings and at night. I have an exercise bike that I ride six and a half to eight miles in the morning and six and a half to eight miles at night. That’s a 30-minute ride in the hill climb mode. Unfortunately, it doesn’t put me to sleep. And if anything, it wakes me up in the morning. And after riding at night, I take a shower and I’m wide awake again.
[00:08:29] Maybe a couple of hours before bed would be a better approach, but with the children, the children need to be in bed before we really have a chance to do anything else.
Teaching, I was putting in more than 20,000 steps at the university. Well, teaching in a public school, you’re not as mobile as you are at a college campus.
[00:08:51] The campuses tend to be self-contained, so I quickly discovered that my step count was much lower on a K-12 campus, too.
I don’t know if the exercise change matters because I didn’t sleep any better when I was getting the 15 to 20,000 steps versus getting 10 to 15,000 steps in, per day. I wish that exercise helped me more and I’ve tried to come up with a routine that would help, but I have yet to find that.
I have resorted in the past to trying things like chamomile tea.
[00:09:23] I was told that “sleepy time” tea would help. Unfortunately, it didn’t, though I love tea and I drink it throughout the day. Sleepy time tea did not help me sleep.
I have tried lavender soaps and bubble baths. I was told that chamomile and lavender would help me relax and sleep. Soothing. I certainly like the bath, but it did not help me sleep.
[00:09:46] I have tried sleeping in the guestroom, which is, in theory, darker and quieter than the master bed, but I don’t sleep any better when I am in a different room from my wife and the pets. My wife has two cats that really like to cuddle up, and, unfortunately, they don’t help or hurt.
[00:10:09] I guess it’s not really unfortunate, it’s just they don’t seem to have an effect. As where, I would argue that when the cats cuddle up with the kids, it makes the kids feel safe and they fall asleep, just
like hugging a stuffed animal.
So, unfortunately, my answer to “How well do I sleep?” is “Not very well.”
And in terms of suggestions, I don’t have many good ones.
[00:10:31] As I said, if you made a checklist, I have gone through that checklist of sleep ideas and suggestions. My physicians over the years have offered a number of insights into why this could be. The most common thing that they go back to is hypervigilance or sensory sensitivity, because it’s not just the sound of the railroad, but the actual vibration, and it wasn’t just the sound of the fracking, but the vibration.
[00:10:58] There is no way to easily mask that sort of sensory input. Unfortunately, there’s no solution to that that wouldn’t have horrible side effects.
Some of the autistics I know are using prescription sleep aids. I found that they actually had an adverse effect on me and caused me to feel queasy and shaky.
[00:11:25] The best way I could explain it is as if someone else had a high dose of caffeine or another stimulant. So for me, the sleep aids left me agitated and shaky, which is not a feeling that I want or desire. As
you might expect, having gone through this experience for 50 years, it is something I’m acutely aware of.
[00:11:52] In terms of my daughter, I don’t want our youngest daughter to go through what I go through, which is this lack of sleep. I worry about her and I worry about her future in terms of getting a good night’s
sleep and being functional during the day.
I wish that I had the ability as a parent to find out what will work for her. And so far, working with her doctors, we haven’t found the ideal solution for sleeping through the night.
[00:12:20] We have found that getting her to sleep… for her, the sleepy time teas combined with a basic melatonin over-the-counter [chewable] is somewhat effective.
I understand that the parent asking me for advice is in the same situation that I’m in. We have children. We want them to sleep and perform well in school.
[00:12:40] We want them to be rested and active during the day so they can be at their best. I know I am not always at my best because of my insomnia and poor sleep habits. I do not wish this upon any child or any
adult. I encourage the parent asking me to work with their physician. I encourage seeking expert help — and I am not an expert.
[00:13:06] I also wanted to caution that parent and others that you may not find a solution.
I know that that is a frustrating answer to hear. We all want to solve problems and when there isn’t a solution, it is disappointing and frustrating. When you are searching for that solution for your own child, it
feels heartbreaking.
[00:13:33] It feels like you’re failing your child, that you’re not providing the best you can as a parent.
Take from this podcast, that you might not be able to address the issue and do your best to provide a quiet, safe space for the child having problems sleeping or the young adult having problems. Experiment with the white noise, experiment with nightlights or projection lights, whatever might help the individual feel safe and secure.
[00:14:02] Experiment with white noise, nature sounds, and music. Experiment with workout routines.
The best I can offer is try everything until you find something that might not solve the problem, but [still] reduce the problem.
[00:14:20] For me, the listening to old time radio where I know many of the episodes and it’s really just the sound of talking and the sound effects, making it feel like daytime. OTR provides just enough ambient
noise that I at least eventually fall asleep. I appreciate that my wife tolerates that background noise.
She can sleep through the train. She can sleep through the fracking.
[00:14:50] She slept well when we lived in an urban setting. And she sleeps well here in our semi-rural setting of Texas. She… she sleeps anywhere! It’s unbelievable to me. She can sleep on an airplane, in a car, she can sleep in a chair.
I need… I don’t know what I need. Obviously. That’s the whole point of this podcast.
[00:15:12] I don’t know what I need to sleep, but I’m not going to stop looking for it.
To that parent who asked, I wish you all the best and I hope that you are able to find the solution for your autistic child. I hope your physician is able to guide you in the right direction.
I will say that, again, for our littlest one, the over the counter melatonin in a higher dosage than we had started with, but that’s okay, the over the counter melatonin paired with the sleepy time tea does seem to be working with getting to sleep.
Now we are going to be hoping that she starts to sleep throughout the night.
This has been The Autistic Me Podcast. I am Christopher Scott Wyatt, and I appreciate you listening to this and future episodes.
[00:15:59] Remember that we are on Facebook. My wife and I monitor The Autistic Me on Facebook, @AutisticMe on Twitter, and, of course, we have The Autistic Me blog, which is easy to find using Google or Bing.
Thank you for listening and I look forward to our next meeting.
https://www.tameri.com/autisticme/