6:29am September 23, 2014

All an autistic person might want to know about circadian rhythm sleep disorders.

Lots of autistic people seem to have circadian rhythm sleep disorders. This is one area that autistic people and our parents tend to agree on about the aggravating parts of autism — the fact that our sleep is completely disrupted compared to a normal day’s sleep. Parents hate it because it means they have to stay awake watching their children at all hours of the day and night. Autistic people hate it because it makes having a schedule impossible, it can make it hard to keep a job with regular hours, and it can disrupt things as diverse as cognition, sensory overload, and pain levels. Although some autistic people like it just fine, as well, and don’t seem to have any ill effects from it, a lot of us find it disrupts our ability to think and function and may add to overload and pain.

This post is super-long so the rest of it’s going under a cut. There’s a tl;dr at the end, or you can skim throughto the bolded sections that interest you.

Around 1998, there was a poll going around on InLv (one of the two by-autistic for-autistic mailing lists at the time) about what autistic people actually wanted fixed about their autism. And the absolute top two were sleep disorders, and sensory issues. These were the two areas that people pretty much unanimously wanted research into, if not getting rid of, at least making things better and understanding them better. Hearing that made an impression on me because neither sensory issues nor sleep disorders were in the criteria at the time, but it was clear that the overwhelming majority of autistic people experienced these things to a degree that was bothersome to us.

I have never had a good circadian rhythm. A lot of my nighttime childhood memories involve lying awake. I’d sleep for short intervals, but rarely the whole night. And then I’d be sleepy during the day, ending up napping randomly then, too.

I ended up getting a behavioral chart put on my wall that said that I needed to have a bedtime routine and stay in bed, and if I wasn’t observed to be in bed all night, I did not get a sticker on my chart for that day. As I’ve said elsewhere, people have always commented on how good I am for behavior modification. I succumb quickly and behave however people want me to behave, if it’s possible. So I learned to lie quietly in bed and not sleep. And if I went a whole week doing that, I’d get a toy or something else like that. So I got a lot of toys for pretending to be asleep, but I didn’t sleep any better.

Later on, a therapist tried to tell me that my circadian rhythm problems existed because I was an irresponsible child, and that I always would be an irresponsible child until I conquered this by willpower and melatonin. It takes more than willpower and melatonin to conquer a severe circadian rhythm disorder. This is the shrink who told me I wasn’t a real adult because I was in the psych system. But I could prove my real adulthood if I could sleep through the night. Then and only then would he tell my parents I was ready to try university. I did what I’d done as a child, and pretended to sleep.

He said that his word held so much weight with my parents that they would obey him, and this would force me to obey them, so I would always be obeying him, since I could not be trusted to be a Real Adult ™. I am very lucky, because I think if I’d not dropped him as a therapist he’d have tried to get my parents to file for guardianship. At this point, he was just trying to trick me into a state of de facto guardianship by telling me I lacked the rights of an adult when I actually had all my adult rights by virtue of having turned 18 without conservatorship or guardianship.

So circadian rhythm sleep disorders have always been a major aspect of my life. But autistic people are often not told about circadian rhythm sleep disorders. I’ve noticed when autistic people have autism due to a genetic condition that also affects circadian rhythms, then our problems are described in a much more physical light. We lack circadian rhythms because we are… I forget the word, it means not having rhythms in general. But when we have plain old idiopathic autism (or are falsely believed to), people tend to attribute our circadian rhythm disorders to behavior problems or emotional and psychological causes.

But in my research digging through university libraries and the like, I haven’t found any actual difference between the types of circadian rhythm problems reported in ‘primary autism’ (without an additional genetic disorder) and ‘secondary autism’ (with an additional genetic disorder). It’s all in how it’s looked at: People with secondary autism tend to be seen as having physical problems first, autism second, and people with primary autism tend to be seen as having emotional and behavior problems first, everything else second. Sometimes it’s amazing to see the exact same traits in two different autistic people, described in two totally different lights, because one of them has Down syndrome with associated autism, and another of them just has autism. The exact same traits will be described in such different ways that if you didn’t know what you were looking at, you’d never know they were talking about the same thing. <sarcasm>It’s good to know autism researchers are so unbiased.</sarcasm>

Anyway, lots of autistic people have not been taught about circadian rhythm sleep disorders, even though the vast majority of us, at least from what I’ve observed, seem to have them. There are a variety of different circadian rhythm disorders and I’m going to describe each one that I can find information on. I’ve been officially diagnosed with Circadian Rhythm Sleep Disorder (at the time, in the DSM, there were no specific ones — that may or may not have changed) since late adolescence, but I have had it my entire life. So this is, obviously, personal. I wish I’d known, growing up, that what I had wasn’t a character flaw or a lack of motivation, nor was it something fixable by simple “sleep hygiene” practices (another word for my sleep disorder is “disregard of Zeitgebers” — Zeitgebers are the cues used in “sleep hygiene” to cue some people with different disorders than the one I have, to sleep at certain times and wake at others).

Circadian Rhythm

Your circadian rhythm is your internal clock. When it’s functioning properly, it tells you when to get up and when to go to bed. It also regulates a number of different body systems unrelated to sleep. But for the purposes of this article, I’m going to only be talking about sleep.

So if you have normal circadian rhythms, your body is running on a 24-hour clock, and you get up and go to bed at roughly the same times every day.

Lots of things can disrupt circadian rhythms without being a neurological condition at heart. Shift work, having bright light in your face at night, and lack of the cues that tell you bedtime is near, are three of the more common ones. People who are blind enough to have trouble sensing light and dark, also have trouble with their circadian rhythms, because light is a big factor in regulating our circadian rhythms.

And autistic people can have pretty much every type of circadian rhythm disorder from what I’ve seen, including combinations of several at different times. For instance, I know a woman who normally has a non-24-hour rhythm, but after her sleep schedule has been pushed around the clock one too many times, she goes into what she has always called Schedule Collapse — which looks exactly like Irregular Sleep-Wake Pattern. Again, I’ve talked to people who insist that if you have one of these conditions, you have it all the time, it doesn’t cycle in and out like that, but that hasn’t been the experience of me or tons of other people I know.

Here are some of the circadian rhythm sleep disorders (CRSD). You’ve likely heard of some, and never heard of others.

Shift Work Sleep Disorder

This happens to people whose work shifts overlap with the time they’d otherwise be sleeping. They don’t have any innate sleep disorders necessarily. But their shift work messes up their relationship to time and sleep, so that they are groggy during the day and often fall asleep at random. No matter what they try, they generally can’t get enough sleep. So they’re tired, and irritable, and their ability to function cognitively suffers. The problem usually goes away once they get a job that doesn’t overlap with their normal sleeping hours. This is a good example of a CRSD that is entirely due to environmental factors and not due to innate neurological problems.

Diagnostic criteria:

Patients must have significant insomnia or excessive sleepiness that interferes with functioning and is associated with a work schedule that overlaps the usual sleep period.
Symptoms must be associated with a shift work schedule over the course of at least one month.
Misalignment between the body clock and environmental clock manifested by loss of a normal sleep-wake pattern has been documented by a sleep log or diary, and laboratory or sleep recordings.
Sleep disturbance is not explained by another sleep disorder; a medical, neurological or psychiatric disorder; medication use; or substance abuse disorder.

Delayed Sleep Phase Syndrome (DSPS)

This is where people fall asleep late (usually after midnight) and get up late. They usually sleep a normal amount of time (if allowed to sleep as much as they want), but their schedule puts them out of sync with the rest of the world, especially if they have work or school at normal hours. Often, they go to sleep and get up at the same times every day. So they have a circadian rhythm, it’s just pushed forward from normal.

Diagnostic criteria:

There is an intractable delay in the phase of the major sleep period in relation to the desired clock time, as evidenced by a chronic or recurrent complaint of inability to fall asleep at a desired conventional clock time together with the inability to awaken at a desired and socially acceptable time.
When not required to maintain a strict schedule, patients will exhibit normal sleep quality and duration for their age and maintain a delayed, but stable, phase of entrainment to local time.
Patients have little or no reported difficulty in maintaining sleep once sleep has begun.
Patients have a relatively severe to absolute inability to advance the sleep phase to earlier hours by enforcing conventional sleep and wake times.
Sleep–wake logs and/or actigraphy monitoring for at least two weeks document a consistent habitual pattern of sleep onsets, usually later than 2 a.m., and lengthy sleeps.
Occasional noncircadian days may occur (i.e., sleep is “skipped” for an entire day and night plus some portion of the following day), followed by a sleep period lasting 12 to 18 hours.
The symptoms do not meet the criteria for any other sleep disorder causing inability to initiate sleep or excessive sleepiness.
If any of the following laboratory methods is used, it must demonstrate a delay in the timing of the habitual sleep period: 1) Twenty-four-hour polysomnographic monitoring (or by means of two consecutive nights of polysomnography and an intervening multiple sleep latency test), 2) Continuous temperature monitoring showing that the time of the absolute temperature nadir is delayed into the second half of the habitual (delayed) sleep episode.

Advanced Sleep Phase Syndrome (ASPS)

This is like the reverse of DSPS: People go to sleep early in the evening, and wake up very early in the morning (such as 3 in the morning). It’s basically the same as DSPS in all other ways, it’s just the schedule is pulled earlier in the day instead of later. For some reason, I can’t find nearly as much information on it as I can find on DSPS.

Diagnostic Criteria: Advanced Sleep-Phase Syndrome (780.55-1)

A. The patient complains of an inability to stay awake until the desired bed- time or an inability to remain asleep until the desired time of awakening.

B. There is a phase advance of the major sleep episode in relation to the desired time for sleep.

C. The symptoms are present for at least three months.

D. When not required to remain awake until the desired (later) bedtime, patients will exhibit the following findings:

1. Have a habitual sleep period that is of normal quality and duration, with a sleep onset earlier than desired

2. Awaken spontaneously earlier than desired

3. Maintain stable entrainment to a 24-hour sleep-wake pattern

D. Polysomnographic monitoring during a 24- to 36-hour period demonstrates an advance in the timing of the habitual sleep period.

E. The symptoms do not meet the criteria for any other disorder causing inability to maintain sleep or excessive sleepiness.

Note: If the sleep disorder is believed to be socially or environmentally induced, state and code as advanced sleep-phase syndrome (extrinsic type). If there is evidence that the sleep disorder is due to an abnormal circadian pace- maker or its entrainment mechanism, state and code as advanced sleep-phase syndrome (intrinsic type).

Minimal Criteria:A plus C plus E.

Severity Criteria:

Mild: The patient is habitually unable, over a two-week period, to stay awake until within two hours of the desired sleep time; the disorder is usually associated with mild insomnia or mild excessive sleepiness.

Moderate:The patient is habitually unable, over a two-week period, to stay awake until within three hours of the desired sleep time; the disorder is usually associated with moderate insomnia or moderate excessive sleepiness.

Severe:The patient is habitually unable, over a two-week period, to stay awake until within four hours of the desired sleep time; the disorder is usually associated with severe insomnia or severe excessive sleepiness

Non-24-Hour Sleep-Wake Disorder

It can also be called Free-Running Disorder, Hypernychthemeral Syndrome, CRSD nonentrained type, and a bunch of other names. But it basically means that a person has a circadian rhythm, but that rhythm is not 24 hours in length. Sort of like being set up to sleep on another planet with a different length of day.

This sort of thing can happen artificially, like when someone is living entirely in the dark with no light cues as to what time it is. Which is why it’s common in severely blind people. It sometimes starts out as DSPS and then changes into non-24 later on as it progresses. It’s supposedly extremely rare in sighted people, but I would bet that nobody’s looking for it too hard in autistic people, because I know a lot of autistic people who have it. It basically makes it impossible to carry out a normal work or school schedule, and people who try, end up with all kinds of cognitive and physical problems as a result of their efforts.

Diagnostic Criteria: Non-24-Hour Sleep-Wake Syndrome (780.55-2)

A. The patient has a primary complaint of either difficulty initiating sleep or difficulty in awakening.

B. Sleep onset and offset are progressively delayed, with the patient unable to maintain stable entrainment to a 24-hour sleep-wake pattern.

C. The sleep pattern has been present for at least six weeks.

D. Progressive sequential delay of the sleep period is demonstrated by one of the following methods:

1. Polysomnography performed over several consecutive days on a fixed

24-hour bedtime and waketime schedule

2. Continuous 24-hour temperature monitoring over at least five days that shows a progressive delay of the temperature nadir

E. The symptoms do not meet the criteria for any other sleep disorder causing inability to initiate sleep or excessive sleepiness.

Note: If the sleep disorder is believed to be socially or environmentally induced, state and code as non-24-hour sleep-wake syndrome (extrinsic type). If there is evidence that the sleep disorder is due to an abnormal circadian pacemaker or its entrainment mechanism, state and code as non-24-hour sleep- wake syndrome (intrinsic type).

Minimal Criteria:A plus B plus C.

Severity Criteria:

Mild:Mild insomnia or mild excessive sleepiness, as defined on page 23; usually associated with a mild impairment of social or occupational functioning.

Moderate: Moderate insomnia or moderate excessive sleepiness, as defined on page 23; usually associated with a moderate impairment of social or occupational functioning.

Severe: Severe insomnia or severe excessive sleepiness, as defined on page 23; usually associated with a severe impairment of social or occupational functioning.

Duration Criteria:

Acute:6 months or less.

Subacute:More than 6 months but less than 1 year.

Chronic:1 year or longer.

Irregular Sleep-Wake Pattern (ISWP)

Otherwise known as (or having keywords of) “no circadian rhythm”, “disregard of zeitgebers”, “grossly disturbed sleep-wake rhythms”, “low-amplitude circadian rhythms”.

This is where basically a person has naps between 2 and 4 hours at random times throughout the day and night. They add up to a full night’s sleep within a day, but there’s no time the person generally sleeps or is generally awake. It makes it difficult to get the kind of deep, restorative sleep that’s necessary for people’s health (which may explain why my pain levels are so bad on the days when it’s more pronounced, for me). It’s generally found in people with neurological disorders. This includes autism, intellectual disability, Parkinson’s, brain injury, brain tumors, and dementia, among others. I have read complaints before that it’s hard to study this disorder because so many people who have it are institutionalized and not accessible to researchers. Also, people with this condition may have a lack of the normal daily fluctuations in hormones and other things that fluctuate throughout the day according to a circadian rhythm.

Diagnostic Criteria: Irregular Sleep-Wake Pattern (307.45-3)

A. The patient has a complaint of either insomnia or excessive sleepiness.

B. The patient has an irregular pattern of at least three sleep episodes during a

24-hour period.

C. The sleep pattern has been present for at least three months.

D. Total average sleep time per 24-hour period is normal for age.

E. Disturbed chronobiologic rhythmicity is demonstrated by either of the following:

1. Continuous polysomnographic monitoring for at least 24 hours shows a loss of the normal sleep-wake pattern

2. Continuous temperature monitoring for at least 24 hours shows a loss of the normal temperature

F. No medical or mental disorder accounts for the symptom.

G. The symptoms do not meet the criteria for any other sleep disorder causing insomnia or excessive sleepiness.

Note: If the sleep disorder is believed to be socially or environmentally induced, state and code as irregular sleep-wake pattern (extrinsic type). If there is evidence that the sleep disorder is due to an abnormal circadian pacemaker, its entrainment mechanism, or brain dysfunction, state and code as irregular sleep-wake pattern (intrinsic type).

Minimal Criteria:A plus B plus C, or B plus E.

Severity Criteria:

Mild:Mild insomnia or mild excessive sleepiness, as defined on page 23.

Moderate:Moderate insomnia or moderate excessive sleepiness, as defined on page 23.

Severe:Severe insomnia or severe excessive sleepiness, as defined on page 23.

Jet Lag

Jet lag is a temporary circadian rhythm disorder that results from traveling between time zones. Most people know what it is, so I won’t go into a lot of detail. Basically your brain thinks it’s in one time zone, but you’re actually in another, so your brain takes awhile to catch up to where you’re actually at.

Reverse Sleep

This is an unofficial term that some people use to talk about people whose sleep schedule is 100% reversed: They sleep all day and stay up all night. This is usually caused by one of the other conditions. It was noted in the first major paper on autistic catatonia, as well (reversal of day and night as one of the common symptoms).

Circadian Rhythm Sleep Disorder (Generic)

Since the DSM-IV-TR just has criteria for CRSD without always specifying what type, I thought I’d add in those criteria too:

A. A persistent or recurrent pattern of sleep disruption leading to excessive sleepiness or insomnia that is due to a mismatch between the sleep-wake schedule required by a person’s environment and his or her circadian sleep-wake pattern.

B. The sleep disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.

C. The disturbance does not occur exclusively during the course of another Sleep Disorder or other mental disorder.

D. The disturbance is not due to the direct physiological effects of a substance (e.g. a drug of abuse, a medication) or a general medical condition.

Specify type (code):

Delayed Sleep Phase Type (327.31 after 10.01.2005): a persistent pattern of late sleep onset and late awakening times, with an inability to fall asleep and awaken at a desired earlier time
Jet Lag Type (327.35 after 10.01.2005): sleepiness and alertness that occur at an inappropriate time of day relative to local time, occurring after repeated travel across more than one time zone
Shift Work Type (327.36 after 10.01.2005): insomnia during the major sleep period or excessive sleepiness during the major awake period associated with night shift work or frequently changing shift work
Unspecified Type (327.30 after 10.01.2005)

Some links (not exhaustive at all):

Circadian Sleep Disorders Network — while they mention all of the above conditions, they seem to focus mostly on DSPS and non-24. I think it was someone from this network who told me (without knowing a thing about me) that I couldn’t have ISWP because only people with severe neurological disorders have that. But I think it was just a member, not anyone running the place.

American Academy of Sleep Medicine Fact Sheet (PDF) — gives overviews similar to what I’ve given you here. Only with a little more information.

Circadian Rhythm Sleep Disorders (Medlink) — Provides links to each major type of CRSD, with more detailed information on some of the rarer ones than I’ve seen elsewhere. I had to take the frame out of its site to get an address that would actually send you to the pages, so in the original version there’d be frames with buttons around all the edges of the window. Unfortunately, in order to read the full content, you have to be a subscriber, which I’m not. But even the less full content has more information than I’ve seen elsewhere on some of these conditions.

Circadian Rhythm Sleep Disorder: Irregular Sleep-Wake Rhythm (PDF) — a scholarly paper on ISWP, which I’ve included because usually information I find on ISWP is a couple paragraphs at best.

Irregular Sleep-Wake Pattern (project NEURON) (.docx file) — Some of the classic old-school views on ISWP from what I’m able to tell — mostly happens in severely neurologically disabled institutionalized patients, etc., etc., etc. But does have some useful information, including diagnostic criteria.

Delayed Sleep Phase Syndrome (project NEURON) (.docx file)

Non-24-Hour Sleep-Wake Syndrome (project NEURON) (.docx file)

Shift Work Disorder (Project NEURON) (.docx file)

Non-24.com — a website of resources for people with non-24-hour sleep-wake disorder.

Conclusion

Anyway… what basically happens with me, is if I’m heavily medicated enough to sleep longer than those two-hour naps, then my sleep pattern acts like a non-24-hour sleep pattern. But normally, it acts like irregular sleep-wake pattern. I’ve been told that this isn’t how it’s “supposed to” work, but it’s how it does work, for me, and for a lot of other autistic people I’ve known. So don’t be surprised if you seem to switch between more than one of these sleep patterns, rather than fitting criteria for just one. No matter what anyone tells you is possible.

TL;DR: The circadian rhythm is how our body’s clock normally functions, by “knowing” what time of day it is. This is one way that most people sleep the same time every day. Autistic people, among others, often have circadian rhythm sleep disorders. These are a number of ways that sleep can be different from a normal circadian rhythm — being pushed further forward or back in the day than normal, having a circadian rhythm different than 24 hours, or seemingly having no circadian rhythm at all or a very weak circadian rhythm. Sometimes we change between more than one of these based on various factors. I’ve included links to as much information as I could quickly find, as well as the diagnostic criteria to as many as I could find (which wasn’t all of them). I hope this helps someone out there. Autistic people are routinely told that our problems with sleep are behavioral, all our fault, psychiatric, emotional, or otherwise anything but neurological. But they’re usually neurological with possibly some environmental and behavioral aspects that make them worse. Some autistic people like their circadian rhythm anomalies, others of us hate them. I hate mine, because when I sleep totally randomly, my physical impairments get worse, including chronic pain.