Autism and Sleep
In a world where researchers have developed charts and tables for how much sleep you need, sleep becomes just one more place autists don’t fit in the box.
I dislike generalizations, but for purposes of discussion they are so darn convenient. One of the generalizations about autists is that they struggle with sleep.
As if that were not bad enough, sleep issues can impact relationships, sometimes significantly. When significant others, members of families, or even friends have different sleep schedules, it can take a toll on the relationships and/or the individuals involved.
As a person with a household of people with sleep issues, I totally understand the importance of sleep! For everyone involved!
I Need to Sleep
One of my favorite stories growing up (and still one of my favorites today) was “The Princess and the Pea.” I wrote about my love of this story in my post, “Lessons on Autism Acceptance from ‘The Princess and the Pea,’” but for purposes of this post, I want to note that the princess’s sleepless night hit home.
A bullseye actually.
A tiny little pea is all it takes to disturb my sleep…or a cold sheet, or a creaky furnace, or a drip from a faucet…. Don’t even talk to me about things like thunder and lightening!
I also absolutely love the scene in the movie Frozen where Anna wakes up looking a bit disheveled. It makes me howl every time I see it, because who hasn’t lived that moment?
I do need sleep.
Just like everyone else, I need to rest in order to be productive and keep up with my responsibilities. Who doesn’t? Yet, I would go to sleep in time to get the recommended amounts of sleep and find myself staring at the ceiling for hours. As a child, I used this time to teach myself to multiply and to memorize and practice my math facts. I outshined many others in this area. (I guess they got a good night sleep!)
As I got older, I used this time to think about answers to research questions or to ponder theoretical issues on which I was working. The time felt productive to me.
Yet, my doctors assured me that this sleep issue must in some way be taking its toll on my general health. Though they were unable to tell me how it was taking a toll, they began the process of trying to fit me in the box of getting sleep like a neurotypical person.
I Am Tired of the Neurotypical Box
I don’t like neurotypical people putting me in a box any more than neurotypical people like me putting them in a box.
Current research studies are largely conducted by neurotypical people, so we have these people who never experienced autism trying to define what autism is like and how we, as autists, ought to be. The questions seem to tend heavily toward asking, “How do we change the bodies and minds of autists to make them like us?”
I really, really struggle with this because I’m not neuro-typical, and I’m never going to be neurotypical.
But that’s the focus, right?
All too often, our focus is on how to make everyone the same.
I have never once seen an article that asks, “How do we get autistic people sleeping in a way that’s normal and healthy and good for them, given that their bodies/minds are actually functioning differently?” or maybe “What type and amount of sleep benefits autists most?”
Trying to fit people with autism in a neurotypical box is, I think, very limiting in terms of the types of identifying strategies we could use to try to manage the difficulties that people with autism have.
In fact, if someone hadn’t told me that I’m supposed to sleep between 10:00 p.m. and 6:00 a.m, I wouldn’t even know that my sleep was a problem.
I generally feel well-rested.
I am productive during the day.
In addition, researchers and doctors trying to put autists in the same box with neurotypical folks exacerbates issues in relationships that arise as a result of differences in sleep/relaxation schedules.
Because it provides support for those who best conform to the sleep charts and tables created by researchers. It tells people that those who do not conform to this standard of sleep are the ones who need to change, and it does so without adequate research regarding whether this is true.
Conversely, if researchers discovered differences in the sleep needs of autists and differences in ways to manage sleep, those relationships would begin to again move forward on a more equal level.
What Works for Neurotypical People Did Not Work for Me
I did try to conform. Really, I did.
At first I was given handouts with sleep tips. The standard stuff. I wish I still had the handouts so I could cite them for you, but in my frustration, I threw them away.
The only tip I really used from these informational handouts that worked suggested that when I woke up at night I should get up for a bit (20 minutes or so) and engage in a simple activity and then try to go back to sleep. The other things they suggested I was either already doing, or were things that had not.
This strategy actually did work for me, and though I hate getting out of bed in the wee hours, if I make myself do this, I do return to sleep much faster.
The other tips–not so helpful.
Upon learning of my autism, I began to read up on sleep issues in autists.
What did I find?
Lists of virtually the same tips (plus a tip about watching for sensory pitfalls) I had previously been given by my doctors who knew nothing of my autism. Because that is what we know how to do.
Some common suggestions include:
- Having a bedtime routine (I have one and it includes spending hours not sleeping after I go to bed. LOL!);
- Avoiding caffeine as you come up on bedtime (I totally adhere to this one!);
- Eliminating stimulating activities prior to bedtime such as video games, television, wrestling, etc.,
- Ensuring that the environment meets your needs: not too much light, noise, right bedding, etc.;
- Getting up for about 20 minutes and doing something restful and relaxing when you wake up during the night before trying again (this suggestion also works well for me!);
- Taking a supplement like Melatonin (Melatonin does nothing for me. Prior to using, check with your doctor!).
Trying to fit autistic people in a neurotypical box, I would argue, is not working. If I were to follow these suggestions and only these suggestions, I still would not sleep.
The Goal Matters
Again, the goal of my doctors was to fit me in the box of achieving sleep according to the charts developed by researchers for neurotypical folks using largely the same suggestions given to neurotypical people.
If I were neurotypical, those efforts would probably benefit me. Heck, if I, an autist could achieve them, they may also benefit me.
What I found instead was that if I chased this goal of sleeping according to the chart recommendations, I became sufficiently frustrated that I got LESS sleep than I had been getting. My anxiety levels went up, I began worrying about health issues that may arise as a result of lack of sleep, I felt pressure to fall asleep, etc.
I went backwards.
It occurred to me that prior to all of this drama around sleep, I had been just fine. I had felt rested, productive, and healthy. It wasn’t until my physicians realized that my sleep did not fit their notions of what healthy sleep should look like that this circus had begun.
My goal had always been to feel rested, productive and healthy. It had never been to sleep according to a chart.
Though I did not know about my autism until later in life, I had treated my difficulty sleeping like anything else — I had found workarounds, and I needed to get back to them!
How I Make Sure I Get Enough Rest
I manage my sleep 24 hours a day/7 days a week. That is the level of focus it takes me to make sure I am well enough rested to keep up with all I have on my plate. That said, it is so familiar to me that it takes little or no effort during those 24 hours a day/7 days a week. It is also worth mentioning that this focus is most likely invisible to those around me. Having lived like this for years, it takes really no effort. It also seems commonsensical to me as sleep is a lifestyle choice, not an activity that takes an hour before bed (for a bedtime routine) plus the time in bed.
Here are some of the things I do to make sure I am at my best:
Work/School/Household Management Strategies:
1. Manage my workload. I seek to increase productivity while reducing stress which makes me feel good and improves my chances of good sleep;
2. Reduce the number of transitions during the day. The fewer times I transition from one thing to another over the course of the day, the more relaxed I am and the better I sleep;
3. Batch my work. Doing my work in batches (all like things at one time) makes me feel like I have fewer transitions so that I am still able to get a lot done, but I don’t change activities often. This strategy goes hand in hand with the one above, but is somewhat different and so worth mentioning here;
4. Take breaks during the day such that when I am working it is intense and productive. As I indicated above, I need to work intensely (not unpleasantly) during the day, but functioning at that level of intensity requires a few breaks. I can go at a rapid, efficient pace, but I have to take a bit of time to just zone out. If I alternate, it seems to keep my mind running at a rate that is not overwhelming and allows me to wind down in the evening;
5. Stay on top of my workload so that I am never behind. There is no point in my going to bed if my work is not done. Though I struggle with mild ADD issues, my need to keep up with my workload seems to more than balance any hindrances my ADD causes. Going to bed without finishing just means I will be up in a bit getting the work done;
Relationship Management Strategies
6. Monitor and adjust the amount of time I spend with other people. I love being around others, but if I have too much “people time” over an extended time, it is overstimulating to me. By managing my time with others, I am at my best for both myself and for them which again enables me to optimize my ability to sleep;
7. Avoid drama and people who stir up drama. Conflict or unrest in my relationships is a sure fire way to train wreck my sleep patterns. Having drama in my life is about the equivalent of taking caffeine tablets at bedtime;
8. Remember others. I work with others impacted by my sleep needs and try to be understanding of the needs of others so that relationships are not only not damaged, but strengthened;
9. Avoid caffeine/stimulants after 3:00. Consuming caffeine after 3:00 p.m. guarantees I will not sleep a wink. I sometimes do it, but I know going in the price I will pay. Enough said;
10. Stop eating after 6:00ish in the evening. This strategy bums me out, but it works for me and well, also for my waistline, so I just do it. I do have to make sure I eat enough before 6:00 p.m. or I will be awake then, too! There is a balance to be had;
11. Engage in intense intellectual or physical activity every day. “Intensity” could be my middle name. I think one of the best things I can do to move toward intense (hehe!) sleep is wear myself out mentally physically. Either one works about the same. I tend to favor intellectual activity, but after a super intense day, I sleep like a baby (a happy baby);
12. Allow myself more or less quiet time before bed depending on the type of day I had. More or less generally starts at about two hours and is a prerequisite for sleep. As I mentioned above, I usually get some productive thinking done during this time;
13. Nap if needed and time allows.
14. Maintain my bed/bedroom in a manner that ensures comfort, eliminating anything that may cause sensory issues. One of the most harmful things to my sleep used to be the feel of a cold spot on a sheet if I moved during the night. Imagine the joy I felt upon being introduced to flannel sheets! Eliminating things that wake you up or keep you from falling asleep is imperative and for the folks around you, understanding some of the things that bother you may be difficult, but their inability to understand does not make those things easier for you tolerate;
15. Read cheesy material once I go to bed. Cheesy books bore me, and so off to dreamland;
16. Sleep under a “heavy blanket.” Long before anything was known about weighted blankets, my sister made me a double crocheted afghan which came to be called my “heavy blanket.” It is just the best! Over twenty years old, it still looks new and still works wonders;
17. Keep my anxiety levels in check. I include this one as a catchall for anything not covered in the other points, but note that many of the other points point directly at keeping my anxiety levels in check. Anxiety and sleep do not mix;
18. Take prescription medication when I get behind and need to catch up. I really do try to live my life without medication. But there are times when I have to set one or more of my strategies aside in order to reach a goal. Just like anyone, I sometimes have periods where I get less rest than I would desire and for that I don’t take any medications. But on those rare occasions where I experience an extended period without sleep and am not, even when engaging in the above strategies, I need some help. Just a few times a month generally, I take a prescription medication to assist me in sleeping.
Not Sure What Will Work for You? Keep a Log!
So how can you begin to identify ways to get better sleep as an autist?
I have to admit here that I am not a sleep expert. I am an expert on me, and one of the reasons for my expertise is logs.
You can read more of my thoughts on logs in my post, “The Best Free Resource for Autism Diagnosis and Management,” but know that I am a huge proponent of them. I love them!! Keeping track of what does and does not work will move you forward faster and provide you with data/information to present to your doctor should the issue ever arise.
Logs can be especially important if you are trying to help a dependent work out sleep issues since you cannot always feel what they are feeling.
So if you are tired of being tired, tired of solutions for neurotypical people that do not work for you the autist, allow that you are different and find what works for you!
A log can be an EXCELLENT, FAST, EASY, AFFORDABLE way to get this information. I am realizing I need to write a post on how to keep a long, but for now, simply track your life. What do you eat? When do you sleep? What were your daily activities? Were there any stressors or relationship issues? What woke you up?
You get it.
Keep a running list every day, recording the times of the main events in your life and then just note things you think you could change for improvement!
If you find that this log does not help you, change the things you are tracking or ask your physician/therapist to take a look at it for you. The goal is to produce enough data that you can identify things that you could change in yourself or your environment to help you get more sleep!
The most important thing is that you set your goals. Determine what amount and type of sleep works for you to keep you feeling rested, happy and healthy. Include professionals in your decision-making process to the extent you feel comfortable.
After all, every night should not be a nightmare. You should not feel like the princess in “The Princess and the Pea.” You should wake feeling rested and ready to go out and conquer life!