Autism and sleep
I see a lot of people on social media giving advice on how to get your autistic child to sleep. Most of the people offering advice are not themselves autistic. Some of the advice I’ve found to be useless. I am, after all, autistic and am the parent to autistic children and thus have a bit of experience in this area. Here, I’d like to explain my routine, the reasons for it, and why it makes sense for me … and thus might work for you.
The Research
A recent study in China examined the problem. The researchers found that the prevalence of sleep disorders in autistic children was significantly higher than that in typically developing children (67.4% vs. 51%, p < 0.01), and among them the four dimensions with the highest prevalence of sleep problems were bedtime resistance (25.6%), sleep anxiety (22.7%), sleep onset delay (17.9%) and daytime sleepiness (14.7%). They noted that autistic children with sleep onset delay or sleep anxiety had higher ABC, SRS scores and higher scores on communication warning behavior with sleep anxiety, with daytime sleepiness had higher Autism Behavior Checklist (ABC), Social Responsiveness Scale (SRS), and Child Autism Rating Scale(CARS) scores, and with bedtime resistance had higher SRS total scores. Differences in the neuro-developmental level were not significant in their study.
Another recent study notes the obvious: “… although descriptions of these issues appear in research, only preliminary suggestions exist for the causes and contributors toward the sleep problems or the interactions of sleep problems with psychopathology, although current research suggests a possible biopsychosocial interaction.”
Indeed, there’s so much of the “what” out there in the corpus of research. Unfortunately, there’s a shortage of “why.”
Hints at why
Looking way back to my childhood, I was very anxious about going to bed. You see, I had (and still have) terrible night terrors. Night terrors, according to the literature, are intense episodes of fear or terror that can happen while you're asleep. They're different from nightmares because they make you feel extremely scared, confused, and even panicked. During a night terror, you might suddenly wake up screaming, kicking, or thrashing around, but you're actually still asleep and not fully aware of what's happening. It’s a lot like a “horror movie” version of liminal dreaming. It can be really scary for both you and anyone who sees it. If you’re prone to panic and anxiety in your waking life, it can make life … complicated.
If you search through Google Scholar, you’ll find over 15,000 studies on the relationship between autism and night terrors, and a bunch of semi-helpful suggestions. There’s no convincing a child, or an adult, to go to sleep if they know that their mind will terrorize them upon falling to sleep. It’s just that simple. As a result, we tend to be “avoidant.” In our desire to avoid sleep, we ruin the next day.
My childhood night terrors meant that I was a basket case the next day. The fact that I’m a non-verbal autistic, and lacked the proper scripts (gestalts) to explain what was happening, meant that I received no support … or recognition that something adverse was happening to me. When my behaviours conspired against good sense, I was just labeled a “bad kid.”
Additionally, I couldn’t get my brain to “shut off,” or “shut up,” so I could fall to sleep. We call this “intrusive thoughts” or a hyperactive (ADHD) brain now. But then, I had no words for it. This many years later, I know now that these intrusive thoughts are not just a feature of my autistic system, they can also come from OCD and Bipolar interacting together within the same system. Being an adopted child, there was no awareness or access to a family history of any of these issues. Thus, it was thought that stern discipline was the answer. Sadly for me, it was not.
What to do about it?
Let’s admit first that mine is a rather extreme case. My trip through Kaiser’s psychology and psychiatry departments in my 20’s was fraught with its own problems. They offered a diagnosis, but nothing that was at all effective in helping me with the quantity or quality of sleep. They offered me drugs, lots of drugs. At the end of it, I was fat, sick, and nearly dead.
The drugs made me bloated and unhappy, though they knocked me out. They didn’t really deal with the underlying problem - the night terrors - as much as they made me black out. Their solutions weren’t compatible with employment, so I began to ignore them … preferring not to be homeless and hungry.
Later in life, an employer discovered that I didn’t seem to sleep much … and took advantage of it. I was often assigned consecutive shifts, sometimes as many as 5 eight hour shifts in a row. I could do it, but it ruined my health. I did it because the alternative was worse, night terrors, and the pay was excellent. The problem then became that my brain had a greater variety of subject matter from which to draw its terrors … all of the crime scenes I’d processed as a forensic scientist.
I took an offer to retire from public service early in 2016, and retired with four hours notice to my employer. My pension vested, I was quickly offered a job by the software company whose tools I had used on the job. With this new employer, and a new state of residence, I had new a insurance plan. This new insurance, a PPO, meant I could see anyone I wanted - a so-called “Cadillac Plan.”
The beginnings of relief
The beginnings of my relief came from a clinical nutritionist. I was having all the usual autistic GI problems. I hoped that they could help where Kaiser could not. For Kaiser, they couldn’t see past my size. I was huge, off their BMI charts. It didn’t matter that I was a championship athlete and in great shape. No, for them, losing weight was their chosen path. They suggested various diets. At their advice, I tried Vegan, vegetarian, gluten-free, and other fads. Nothing worked. It had to be my size, they thought. They were wrong, again and again.
This new specialist, this clinical nutritionist, understood the autistic system as designed, not as a disordered “typical” system but as one that works as it was designed. After a few simple and painless tests, she sat me down to explain what she thought was going on. As it turns out, my being autistic had little to do with my GI problems.
It turns out that I’m histamine intolerant. I also have anxiety. The two conspire together in my system. The lack of histamine regulation produces GI problems. The anxiety shuts my GI system down, trapping the problems inside. This produced a “blowtorch” like effect in my system. When one is experiencing GI distress, it’s obviously hard to sleep.
The solution proposed, a radical change in diet.
When you begin to realize the extent of histamine triggering foods in the typical western diet, you wonder if there is anything one can eat. At my size, I have to find a viable source of 3600 kcals / day. There are not enough foods that I can safely eat in a vegan, vegetarian, or gluten-free diet to produce that much energy each day. There is, however, a source of calories that I can safely eat that can produce that much - saturated animal fats.
With that, I switched. She provided me with a meal plan that was simple and easy to follow. I could find the foods on it anywhere that I would travel. It was / is portable and requires little in the way of preparation.
Here’s the plan that I use, and have used for the last seven years.
Rising (03:30)
1l water with 5g of salt and 50ml of lemon juice. This gets the body refreshed and electrolytes replenished. Now, I know what you’re thinking. That’s a lot of salt. Most books recommend around 0.9 grams per liter. But, the diet moves sodium from the system and thus supplementation is necessary. Here, I’m jolting my depleted system with ~2000mg of sodium.
Breakfast (05:00)
Tea - Not your ordinary tea, however. I steep 56g of salted butter with 5g of turmeric and 500ml of boiling hot water.
Walnuts and Almonds - 30g each of raw almonds and walnuts.
Lunch (07:30)
Viking Coffee - Viking coffee is a mix of ingredients common in the “keto” community. I blend 56 grams (g) of salted butter with 28g of whey protein isolate in 500ml of glorious Italian coffee. The brand of whey that I use has a nice branch chain amino acid profile.
Cheese - I eat two slices of Havarti cheese. Each slice has about 6g of fat and a bit of protein, with no carbohydrates.
Coconut fat bombs - I use a mix of coconut flour, butter, organic vanilla extract, and salt. These make for a nice soft biscuit. I’ll have a half a dozen small bombs at lunch. From scratch, each one of these contain about 2g fat and .5g carbohydrates.
Snack (10:30)
Coconut and flax seed bun - I use a mix of coconut flour, ground flax seed, butter, salt, and one egg per bun. Here I get the fat from a variety of sources, a bit of protein from the egg, and the wonderful micronutrients from the flax seed, butter, and egg.
Dinner (12:00)
Baked chicken breast - I eat a baked chicken breast, roughly 225g. The meat is seasoned only with salt and pepper.
Cheese - I eat two slices of Havarti cheese. Each slice has about 6g of fat and a bit of protein, with no carbohydrates.
Flax seed crisps - I have a very simple crisp recipe that uses only ground flax seed, salt, and water. I eat an ~30g piece.
And there you have it. This is what I’ve eaten without fail since then. It’s easy to prepare. It’s portable. It provides 85% of its calories from fat. It has the right amount of protein for my size and age (any excess protein gets converted to sugar and is stored as fat). It also has about 5% of calories coming from carbohydrates … and no sugars at all.
Getting used to such a drastic change
I will not lie. It took about 3 months for me to get over my psychological addiction to sugar. Most don’t realize how addicted we are as westerners. It was brutal. Some say that sugar is more addictive than heroin. I don’t know about that, but it’s a hard thing to eliminate in one’s life.
But here’s the kicker, within the first few days, my GI tract began to feel better. Within a month, I had lost about 30lbs of the bloat that the meds I was taking had put on. By the time I was past the sugar cravings, I was off all but one of the eleven medications I was taking to support my eating the western diet.
Time Restriction / Intermittent Fasting and Sleep
Now, you might have noticed the timing of the meals. I’m done eating by noon. I’ve crammed in all of my calories within a short window of time. There is method to this madness.
In my system, gigantic rushes of energy (calories or caffein) trigger long bouts of sleeplessness. Thus, restricting my calorie and caffein intake to the period from rising until noon means that my system will run out of steam by bedtime. For me, bed time is around 20:00. In this way, I can try to get the 7-8 hours of rest that I need to recharge.
Intermittent fasting has a long history of effectiveness. It’s been used to treat a variety of diseases and disorders. The same is true for diets that limit carbohydrates to a minimum and feature an abundance of saturated animal fats. So what I’m doing isn’t new, or some sort of fad. It’s a back to basics approach that resembles how our ancient ancestors ate.
There are other benefits to this way of eating. When the body isn’t digesting food, and sleeping, it can heal the parts of the GI tract that have been damaged. It can create the necessary hormones we need for sleep out of the cholesterol that we vitally need.
An aside, most of our cholesterol is internally produced. Very little comes from external sources. We need it in our skin to help generate vitamin D. We need it to produce our own melatonin and serotonin, vital hormones. So much our vitality depends upon this wonderful compound. Yet, western medicine declares it the villain. We’re just now finding out what a low cholesterol state looks like in our aging population. Statin drugs are causing all sorts of problems in our elders. But, I digress.
It’s no fun
I’ll grant you that my meal plan is not fun. My food is fuel, nothing more. I get no “joy” from it. It’s not Instagram-worthy. There’s also a social penalty to eating in the morning when parties and the like are generally in the evening. What does one do when everyone is eating “yummy” things? We each have our own strategy.
For me, I use it as an opportunity to explain the benefits. I eat almost 4000 kcals / day. This usually shocks people that don’t understand what Total Daily Energy Expenditure means or how it relates to the amount of kcals / day one should consume. I would also explain what happens when you go drastically under the TDEE (hint: it’s not good).
I would also explain that I gained no weight during the COVID pandemic. None. Zero. Thinking economically, at my size, suits are expensive. I don’t want to have to have new suits made for me if I gain weight unnecessarily. Thankfully, my diet doesn’t cause that problem.
I look a lot younger than my peers because of the fats and cholesterol that protect my skin. So there’s that benefit. But there’s also the benefit of being able to sleep, and thus repair my body each night.
Side Effects?
There is one interesting side effect to my new lifestyle and my night terrors. I found liminal states / liminal dreaming years ago as a possible therapy for my night terrors. I found Jason Louv, the mastermind behind Magick.me, and P.D. Newman, author of Alchemically Stoned and others. I found that with my diet, my body was producing it’s own DMT. I found that in fasting, my body was creating it’s own “clean” tripping experience. I learned that shaman across all cultures had entered into these altered states beginning with fasting. With these sources as my guide, I learned how to work in these liminal spaces to minimize the terror.
Now, in all honesty, there are still times when the terrors are beyond my control. But they are fewer now that I’ve been practicing this routine. What is more common is that liminal space between waking and being fully awake. Sometimes, my brain is in two conscious places at once and it’s a bit difficult to pull out of the space an into waking reality. But this mainly occurs due to being fatigued before sleep - lacking the power / energy / will to fully wake up in the morning. But, it does happen.
Conclusion
This has been a long, winding essay on one person’s journey to a night’s sleep. As a Freemason, I’ve had access to resources that aren’t generally available to the public, though I’ve linked to publicly available sources from those Masons. I’ve access to conversational spaces where I can be completely open and honest about what I’m dealing with, and receive others’ honest replies. I’m grateful that Jason, P.D., and others have published their thoughts so I can share. Jason’s Magick.me is an amazing resource and I’m happy to have the ability to talk about it.
I realize too that not everyone has the privilege or place to be able to be as regular with their diet and sleep. Nevertheless, I share my story and the links to guide your quest. Hopefully, it helps. In the spirit of sharing, let me know what has / hasn’t worked for you in the comments below.