Posted in Parenting, Self-Care

Bad Advice: Autistics and Sleep

My little guy stayed up all night again last night.  He’ll sleep eventually, either later today or tonight.  One of the beauties of homeschooling is we can just work around these phases.

They do happen to kids who are traditionally-schooled, too.  They just have to deal with it (sadly) and go to school in their increasingly zombified states.  I imagine a fair number of times they have meltdowns at school.  (Speaking of meltdowns, I’ll repost something on those soon.  The brief version is they LOOK like tantrums, but unlike tantrums, they cannot be controlled by the Autistic.)

[Image: A British Shorthair with Siamese-like Markings (Black ears, paws, parts of the face, with whiter upper arms and head) sleeps on a sofa. This is a close-up of the cat’s face and front paws as he snuggles against the cream fabric that has orange and yellow capped-mushrooms on it;] image from Pixabay

The last time we went through this no-sleeping or limited sleeping phase was a few weeks ago.  In the middle of it, his neurologist’s office sent us an e-mail that I found bordering on offensive about trying to keep a routine to avoid sleep problems.  You see, the experts believe that if we keep a routine going then somehow, magically, our Autistic kids will sleep.  They think if we take away screens a million hours before bedtime, our kids will sleep better.  This is true, perhaps, of neurotypicals, but the amount of screen time our son has each day (Microsoft sends me an e-mail each week with the total of our son’s computer time) doesn’t seem to correlate at all with his sleep.  Take a moment and think over your own, adult life.  Do you always have a predictable routine, or not?  Doesn’t life happen?  Do some of your insomnia nights connect to being on the computer all night, but others just…happen?

It’s worth noting that sometimes when our bodies are growing, we either sleep a lot more or a lot less.  When my little guy was younger, he slept more.  Now, it seems, he sleeps less.  We also noticed, in speaking with my aunt who has a probably Autistic daughter around my child’s age, that the days she uses less executive function, she stays up later.  The more choices she has to make, the more she sleeps.  She used to sleep very early, like around 7 p.m. when she was traditionally-schooled, but since she’s been homeschooled, she’s calmer and gets a whole lot more schoolwork done…but some nights, she just can’t sleep.

So it can’t be JUST about routine.

Why should we keep our Autistic kids in a bubble of routine, exactly?

The Autistic Life: Routines Are Great…Sort Of

Let’s take a moment to talk about routine before talking about sleeping.  This way, you can understand a bit about what the experts mean about routine.  You see, they’re not wrong about routine.  Routines make it easy to limit the use of executive function because we always know what comes next.  The problem is, most people talk about routine as if it is something forced on the Autistic instead of the natural way life falls into patterns.  Since my son is homeschooled and my husband and I work at home most of the time, we have a sort of lab to see what happens when three Autistics can set their own routines.

My son gets up when he gets up.  He rolls out of bed and goes to the computer (yes, it’s in his room now…more on this later).  He wakes up with a Stampy or Dan the Diamond Minecart video.  If dad or I have anticipated his getting up, his breakfast might be at his desk, but otherwise he’ll watch until he wakes up enough to come down to get his own breakfast.  Then, he’ll go back upstairs and play various computer games for most of the day, breaking as it seems needed.  His dad or I will remember pills (he takes guanfacine three times a day: wakeup, afternoonish (depending on when he woke up), and before bed; guanfacine helps him to take a pause before making a choice without any sort of medicinal fog so he can do what he wants to do without being too distracted).  Sometimes, he’ll go in his other office (the basement) to play Wii-u or to work in the Lego room (yes, we have a Lego room; this is why his computer is in his room now).  He comes out sometimes to chat with us; we’ll play Mad Libs together sometimes or watch funny cat videos or talk about video games.  Sometimes he reads a book, but he does a lot of his reading online, where he researches for his various video game projects.

So, his routine is similar every day, but allows some deviations.

My husband and I have a similar routine: wake up, to go computer, check e-mail/Facebook/school stuff/blog stuff.  Eat breakfast while going into a video game to check craft sales or do daily missions.  Figure out what the goals for today are (groceries, bill-paying, cleaning, etc.) and what work responsibilities exist (I often work a 7:15-4:15 shift online) and just do them.  It doesn’t look much different to the average person, though my husband and I will be more likely to leave the house (individually; no, we don’t let the boy stay home alone) to do various tasks.

So, routine.  You’ll see that, left to our own devices, we all seem to fall into a routine.

As such, routine is not bad, but the difference between the experts’ routine and our routines is that the experts have OUTSIDE controls over the routine.  A teacher tells you what to do and when and your mom and dad tell you when to wake up and when to sleep and when to eat (etc.).  You even get told when to go to the bathroom!

Do you see a little why coming home for the summer after such a routine could be unsettling?  It takes enormous amount of executive function to create a routine and the choices available are alarming.  So, yes, it will help in the short-term for mom and dad to make a routine for the child in the summer.

But in the long-term, when is a better time to learn what your body needs and when than childhood, when you don’t have to work?

Autistics and Sleep

I was reading Cynthia Kim’s amazing book and she talks about sleep in a part adapted from this blog post.  The biggest takeaway I got from the book is that sleep problems are typical in Autistics (she gives a figure of 40-80% in children), and that my little guy has to learn to live with them.  She wrote about her own parents generally expecting that sleep was up to her, and though they gave her a bedtime (as we give him), they pretended not to notice when she was up late reading.

My husband talks about being up all night sometimes, himself, and watching a lot of late-night movies.  The experts say to turn off the tv before bed, but in his experience, he needs to be watching tv or listening to a podcast to sleep.  (I, however, do better reading and usually fall asleep fine, but I’ll wake up sometimes at 3, 4 a.m. and begin writing or something; I did that even as a child).

So, we turn off our son’s monitors and cover his keyboard that lights every night and only allow him the Kindle with the bluescreen.  He even has f.lux on his computer (https://justgetflux.com/) and I do, too, and it turns down the monitor at night so he has a visual signal that bedtime is coming and it starts to become more calming.    We have a rule that he can read in bed (he’s read many a book, sitting up all night) or use the Kindle to watch videos or read, but he can’t game anymore.  He usually falls asleep this way, but some nights it doesn’t work.  I’ll wake up at 3 or 4 and see the Kindle still on or he’ll call to me as I walk to the bathroom.  I do my best not to react as I assure him that it’s okay, and that he can get up when it’s light outside or he hears the birds.

I usually visit his room when I get up in the night myself, and usually pile blankets on him.  We are investigating weighted blankets, but since blanket textures are important to him, we have to figure this out (if anyone has tips on this, we’d love to hear them!).  In the meantime, getting the blanket collection back on him does tend to help him to fall asleep faster.

I would be remiss here if I didn’t tell you about the Melatonin.  Melatonin is a naturally-occurring hormone that we all have, to some extent.  It’s the thing that tells us, hey, it’s getting dark, so maybe we should go to sleep.  Teenagers have Melatonin available for them later than children, and this is why they have to stay up later…their bodies literally cannot fall asleep sooner.  Some of us apparently didn’t get in the Melatonin line since we don’t have enough of it whatever our age.  As such, we can take supplements and these are common for Autistics.  My little guy takes it at bedtime most of the time, but when he’s in an insomnia phase, we just stop taking it since it doesn’t do anything.  While it does help Autistics to stay asleep better, you can overpower it especially if your brain is going through the “don’t need to sleep” cycle.  My husband rarely needs it since he uses podcasts to fall asleep (though he doesn’t usually go to bed until 2-3 a.m.) and getting up early isn’t necessarily a problem for me since I get a lot of work done while everyone else is sleeping.

But since the insomnia is normal for Autistics, whatever type of insomnia we have, we want to be training our son for the long-term.  Routine won’t help him sleep, not really, but learning what to do when he can’t sleep is a life-long skill.  He may get married and have kids someday, so if he can figure out what to do at night when he’s the only one awake now, it’ll benefit him for the future.

It’s also why we homeschool; we want him to hone his programming and game design talents so that he CAN work at home, on his schedule, whatever it turns out to be.

No One Said Sleep Would Be Easy

On the nights with little or no sleep, every one of us can be a bear the next day.  We have fewer spoons in our drawers and we’re all prone to meltdown.  But the more we can practice, as a family, working with the sleep problem, it seems to get better for everyone.

But the best tip I can give you is to not to overbook your life with activities.  That will, I guarantee you, backfire.  We need more time to rest and relax and recharge than most folk, and our sleep schedules aren’t predictable.  The more you can make work tasks occur “whenever” and be flexible, the better.

If you do, you can “ride out” the insomnia battles.

 

Update: From the archives, and as true today as it ever was…but before I went back to work outside the house.  My son has effectively outgrown the need for the guanfacine, though, as he is better able to make decisions that are not so impulsive and dangerous.

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