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“Delayed sleep phase syndrome”: how about neurodiversity?!

January 4, 2010

This morning and afternoon were pretty rough. I woke up coughing from allergies several hours early, and felt groggy and hungover until I got back down for a nap.

While I was up in front of the keyboard, though, somebody on Twitter linked to an interesting piece: Earlier Bedtimes May Help Protect Adolescents Against Depression And Suicidal Thoughts.

Especially since sleep-related stuff was much on my mind already, seeing that prompted me to look further into what I’ve been experiencing.

Some years back, I had read something about being a confirmed night owl having been turned into a sleep disorder, and figured I probably had it. Yep, it does sound that way. They’re calling it Delayed sleep phase syndrome.

As one post, Eveningness vs. DSPS points out, this is apparently distinguishable from the more usual “eveningness” chronotype:

People with DSPS do not adjust to a new schedule easily, if at all…

Or, as Wikipedia puts it: “Attempting to force oneself through 9 – 5 life with DSPS has been compared to constantly living with 6 hours of jet lag.”…

When normal chronotypes shift their schedules, all the body’s rhythms catch up and are synchronized to each other within a few days. In DSPS, the dissynchrony may continue as long as the shifted, “unnatural” schedule lasts, even for years or decades, leading to physical and psychological disorders.

It’s clear that people with DSPS who (try to) work days, have much the same set of problems that many shift workers have, whether these always work nights or are on a rotating schedule. However, shift workers’ problems receive sympathy and understanding while people with DSPS are commonly stereotyped as undisciplined and lazy. Dagan again (PDF, page 7), on adolescents, points out that “[f]requently, the patients’ parents, teachers, doctors, or psychologists believe that the patients’ biological sleep-wake problem and the accompanying dysfunction at school are motivational or psychological in nature, a belief that during the years, the patients tend to adapt themselves. This attitude toward CRSD patients, to which [they have] been subjected since early childhood or adolescence, adds psychological distress to the practical difficulties of coping with life.”

Like normal people, we do adjust (entrain) to the earth’s 24-hour rotation, but, without treatment, we don’t “learn” to wake up at a conventional, early time of day.

Reading, I wondered about possible connections between frequently not getting enough sleep and a lot of the “sleep drunkenness” and “brain fog”–not to mention just plain fatigue and increased pain levels from it, which have been wearing me down lately. Not too surprisingly, they are indeed related.

I also can’t help but think of one of my cousins. I was at their house when a smoke alarm did not wake him up in the morning! The sleep thing no doubt had something to do with his dropping out of high school.😐 That’s the extreme end, but it’s not an unusual thing in my family. Guess our ancestors probably did a lot of night fishing and the like!

The other things I read were much the same as those first couple of articles linked above. The main point I picked up? I’ve been blaming myself again over something I really can’t help, echoing what other people have said out of misunderstanding.

Yes, this is another example of neurodiversity in action. It’s not a matter of “laziness” or Not Trying Hard Enough. Feeling obscurely guilty when I don’t get into bed before 4 a.m. or up before noon does not help, any more than kicking myself over the tics or dyscalculia did. I have even caught myself thinking that I somehow deserved to feel jet lagged, if I am unwilling to put in the “necessary effort” to totally change my sleep pattern. (Yep, tried it most of my life, it didn’t work!)

Not too surprisingly, this self-blame has been harder to kick, especially since not being up to paid work right now has made me far more sensitive to appearing “lazy”–the same thing that helped lead to physically exhausting myself beyond all reason, and aggravating the chronic pain. My blaming has tended to take the specific form of “Nigel will think I’m lazy, and I will disappoint him–surely I could straighten up if I tried”, even knowing rationally that this is unlikely. It is easily recognizable as a direct continuation of the kind of stuff I got to hear when I was younger.

The problem I see with a lot that has been written about this, too? It gets characterized as a “sleep disorder” requiring “treatment” (while writers admit that it’s very hard to “treat”). This is another area in which if your neurological setup does not match the majority’s, in terms of circadian rhythm, there is obviously something wrong with you. It couldn’t possibly be something wrong with expecting everyone to fit into the same rigid schedule.

Nah, that–on top of jet lag–wouldn’t give a person “physical and psychological disorders”. Not at all.

That same problem was what helped push me to look into this further, after reading the Earlier Bedtimes May Help Protect Adolescents Against Depression And Suicidal Thoughts thing. They’re approaching the very real problem of sleep deprivation amongst kids–BTDT–in a very inflexible and authoritarian way. Everyone must be the same, and this must be enforced by parents if they’re not. If they’re still sleep deprived and depressed, there are multiple people to blame for it! (Remember, at least 7% of adolescents fit the criteria for “Delayed sleep phase syndrome”, not to mention all the rest of human variation here!)

This reminds me again of just how glad I am that my parents were not given to micromanagement, but instead took the “if she doesn’t get enough sleep, she’ll soon figure out she needs to” and “if she doesn’t do her homework, she’ll see soon enough that it’s a good idea” approach. That’s pragmatism, rather than authoritarianism, in action. And you’re more likely to find reasonable ways of dealing with difficulties–such as, in this case, working the night shift or finding a way to set your own work hours–if that’s the approach you’re using.

I think it’s been amply demonstrated by now that controlling other people does not produce better results, even when things like circadian rhythms are not involved! As witnessed, on a more individual level, here: The Support of Autonomy and the Control of Behavior (PDF) and We Perform Best When No One Tells Us What To Do.

16 Comments leave one →
  1. January 5, 2010 1:00 am

    “… there is obviously something wrong with you. It couldn’t possibly be something wrong with expecting everyone to fit into the same rigid schedule.”

    You’re right, of course. Society ought to be able to allow for us. In fact, because night work is necessary and many people get sick working nights, society ought to be glad to have us. Unfortunately, many of those night jobs require at least high school and often higher education which we can’t get without being able to function (well) in the middle of our biological night.

    Even if it is not very treatable, it is good that DSPS has a name and is recognized. We don’t have to accept the guilt. There’s no reason that having to be in bed by 10 PM is seen as virtuous while having to be in bed until noon is the opposite.

    BTW it’s officially no longer just a syndrome; it’s been “promoted” to disorder.

    • urocyon permalink
      January 5, 2010 1:34 am

      Yeah, more recognition is definitely a good thing, from a practical standpoint. I know where you’re coming from with the coping with educational and very possibly work settings. Just going heavier toward the idealism in this post, because it struck me as such a perfect example of the social model of disability.🙂

      Getting past guilt is all to the good! Placing value judgments–much less the moral ones a lot of people use–on when somebody else sleeps is pretty messed up. Even more so if you’ve learned to do that to yourself. With any luck, this will improve.

  2. January 5, 2010 10:51 am

    You might also want to check into “Non 24 Hour Sleep-Wake Syndrome” and Irregular Sleep-Wake Pattern”. I have a weird combination of the two, and non-24-hour can be confused with DSPS since it’s rare in sighted people so not often looked for. (I know a lot of autistic people with it though.)

    One of the hardest parts of either of those two conditions is being totally unable to keep to a schedule, because no matter what time of day I will at some time be asleep during it. I was reading that non24hour on it’s own can keep people from holding down jobs, and I remember it being he’ll in school because I would often lose sleep at night and then fall asleep in class if I had cycled around to not sleeping at night. And then the irregular sleep thing would mean that periodically my schedule collapses into total randomness that cannot be controlled in any way.

    Which is why I am up at nearly 6 in the morning after sleeping from 4:30 pm to 11:30 pm and then 2 am to 5:30 am. And why sometimes people think I sleep constantly on days when sleep has shifted into all daytime. (And why I can be on the net 2 hours a day but distribute it around the clock so it looks longer.)

    • January 5, 2010 10:15 pm

      It’s all very tricky, because we are so seldom really allowed to sleep and wake when our bodies think it’s right to do so. And we apparently react quite individually to sunshine and electric light at the various phases of our circadian rhythms. I’m convinced (and so is my sleep specialist) that DSPS and Non-24 are essentially the same thing except that the bodies/brains of people with DSPS strive to achieve a 24-hour schedule, however delayed, while Non-24 just ignores the light/dark cycle in nature. I agree that Non-24 is not all that rare in sighted people, and I think that research soon will admit that.

      From what I’ve read, Irregular Sleep-Wake Pattern is extremely rare except in connection with head trauma (injury or tumor) and dementia. That is, it doesn’t exist outside of some (known or unknown) physical cause. I think anyone whose body/brain at times strives for regularity (including Non-24 regularity), doesn’t really have it.

      I’ve had DSPS all my life. Now I’m retired and had expected my sleep schedule to settle into something regular. It hasn’t. About half the time I awaken between 11 AM and 12:30 PM, but I cannot make that regular, as I’d thought and hoped. Also, I’m sleeping much more than the normal one third of the time. I can’t really still be making up for lost sleep over the decades, though it feels like it.

      Amanda, you might want to look into the “niteowl” mail list at circadiandisorders.org, mirrored in a YahooGroup. We exchange information and support. It’s been almost literally a lifesaver for me. There are several groups on Facebook, too, but they tend to die out or turn into chatrooms. We try to keep the mail list on topic.

      • January 7, 2010 7:33 am

        Well, thing is, when I try (with medication, etc.) to force myself into any kind of regular sleep cycle, what usually happens is that I manage it for a day or two, during which my cycle is longer than 24 hours, and then it completely falls apart into totally random naps throughout different parts of the day and night. I’ve suspected that when I do manage something close to a regular pattern, what’s actually happened is that my random naps have all clustered together for a short time before jumping back to their normal state of completely out of control.

        When I was diagnosed with these circadian rhythm sleep disorders, I was simply told to keep a log of when I naturally slept. I took the log, by drawing the times I slept onto a sheet of graph paper, and then taping it end to end. The result, was sleeping at totally random times of day, in anything from 1 to 3 hour periods generally (and if it seems to be a longer period, I have usually woken up for a little while and gone back to sleep in the middle of it). Which I was then told was irregular sleep-wake pattern, and that’s been what I’ve been told ever since.

        Autism is often associated with irregular sleep-wake pattern. So is Parkinson’s and related disorders. And… guess what? I’m autistic, and I have a parkinson-related condition. And my brain is abnormal in a large number of other ways, some of which I started out with and some of which resulted from damage. (And I’ve been mistaken even in recent years by medical professionals for someone “with the cognition of an infant”, because of my appearance. Laypeople make that mistake all the time too.)

        So, basically, yes, I know all that (and given that it’s my diagnosis, I’ve actually researched it a fair amount, it is far from unusual in people like me), and I really have this condition, and I really fit into more than one category of people who often end up with this condition. And it makes me really uncomfortable when people make assumptions without even knowing me. Generally when people who do actually know me, find out about this condition, they go “Oh yeah that is totally like you,” not, “People who have that condition are different than you.”

    • urocyon permalink
      January 6, 2010 2:11 pm

      Thanks for pointing out the non-24-hour thing! It hadn’t occurred to me as a possibility. We’ll see if actually going to bed and getting up when my body wants to leaves me less prone to falling asleep at other times. I think the apparent instability in mine has just been coming from chronically trying to adjust to a more “normal” schedule, but there’s nothing like a reasonable baseline there. Yet. Non-24-hour is definitely a possibility to keep in mind!

      Funny how a lot of these supposedly rare things don’t seem to be nearly as rare if anybody bothers to look for them.🙂

      That does sound rough, trying to keep any sort of regular schedule. Glad you are at least aware of what’s going on. I would not be surprised if this is another thing that’s been treated as a psych symptom in past; mine has been.😐

      • January 7, 2010 9:43 am

        I know a fair amount of autistic people who are diagnosed with any (or some combination) of non24hour, dsps, asps, or irregular sleep/wake pattern.

        Regardless of what the other poster said, combinations do happen. Because… these conditions, they are abstract ways of describing common patterns among certain people’s experiences. That means that while some people are going to fit the classic patterns, most are going to be either somewhere in between, and some will be off in another direction entirely! A syndrome is just a collection of common patterns, and is not as real as our actual bodies are.

        And to say that a person has to have absolutely no pattern ever in order to have irregular sleep wake pattern, is like saying that real autistic people never communicate and never stop rocking, that real deaf people can’t hear even a tiny amount of sound, etc.

        I actually know someone autistic with the same two sleep diagnoses I acquired. But our patterns are totally different. In her case she is mostly non24hour except every time she goes through a cycle or two of waking times, she goes into full-bore random mode. In my case, I start out in full-bore random mode but if I use meds and many other things to create a cycle then if it works at all I have a couple to a few days of non24hour before it falls apart. So both of us have the same two diagnoses, but opposite amounts of each one.

        Regarding psych, geez yes. It was treated as anything from a sign of depression or mania (depending on which time of day I was awake or asleep when they observed me), to a behavioral problem, to a lack of responsibility.

        I had a psychologist who tried to convince me I was not a real adult because I had been in the system. I wanted to go to university. He told me in order to prove I could go, I would have to show him I could sleep in a regular schedule, and this would prove I had the responsibility to make it. University was a terrible idea indeed but using willpower to overcome a circadian rhythm disorder?!?!?! WTF. That whole nightmare of trying to prove my adulthood was what made me realize he wasn’t as good as I thought he was (I had very low standards).

        My psychiatrist also wrote a list of goals for me once which involved one goal that I needed to sleep consistently. And institution staff have been bothered by my not giving either the day OR night shift a break by sleeping through it (or then of course sleeping during activities). I got drugged into sleep countless times in those settings, but then I got in trouble for sleeping I’m the afternoon or something. That was a constant battle and I had no idea why my body didn’t comply.

        Sleep has always been a touchy area for me because I spent the time until my diagnosis either being blamed for random sleeping, or having someone make pronouncements about my physical or mental health on the basis of either seeing me sleep at an odd time or awake at an odd time. And of course my parents didn’t get it until I was diagnosed either, so that was a different neverending battle.

        I am just glad things are different now. Although I am yet again in a situation where I didn’t realize people were gauging physical health by sleep patterns so I have some more explaining to do.

  3. January 5, 2010 9:47 pm

    Oh, this is so completely me. At the moment, i typically go to bed between 4 and 5am and get up at about 2pm (well, actually, wake up at about 12, but not manage to actually get up until about 2, which is another problem i seem to have). I think my DSPS is linked to my SAD (or, at least, it feels a lot worse in winter, which is probably at least partly because of the lack of daylight – as it’s usually a couple of hours between me getting up and me leaving the house, for a couple of weeks either side of the solstice, on more days than not i didn’t get outside before sunset at all – but i do also think that my sleeping/waking times do actually become later in winter), but i do have it, even if not to the same extent, all year round. (Oddly, as a child i was a very early riser, and only starting having notable difficulty in getting up at around 17/18, which might be linked to a virus – which was probably either laryngitis or glandular fever, although i never went to a doctor about it – which i had around that time, and distinctly remember my sleep phases being shifted afterwards.)

    I totally agree with you that this is a perfect example of social stigma making something a “disorder” rather than anything biological. It’s amazing how much “moral” crap society attaches to the issue of when one gets up and goes to bed (some of which i think ties into general puritanism and cultural associations of night/sleeping with sexual activity, but also into the whole nasty complex of ideas around “laziness”, the “Protestant work ethic”, unemployment, etc) – in a rational society, where “work” wasn’t structured in such authoritarian and social-control-oriented ways, it wouldn’t matter at all (unless it mattered to the individual). It’s definitely an issue that i struggle massively with guilt and self-blaming over (although in my case there is also a personal well-being dimension, as i do need more sunlight than i get, especially in winter, with the hours i sleep… but then, for that should i “blame” society, myself or the axial tilt of this bipolar planet??? Maybe i should blame the people however many thousand years ago who thought it was a good idea for a species which evolved near the equator to settle this far north…)

    I’m pretty sure i have DSPS rather than non-24-hour syndrome, although i can both sleep and stay awake for considerably longer than the usual periods (generally, keeping on doing anything is always easier than stopping it for me – which might well be related to the well-known autistic “resistance to change”, which i think is something of a misnomer) – this, for example, would be easily possible for me at a time of year when i would get sufficient daylight while doing it – but i also know a lot of neurodiverse people whose sleeping patterns are unorthodox, inconsistent or both.

    That “We Perform Best When No One Tells Us What To Do” link is pretty awesome too – another example of science supporting an anarchist society, i’d say😉

    • urocyon permalink
      January 6, 2010 2:22 pm

      Strange, I was also a very early riser when I was little, to the point that people kept sending me back to bed so they didn’t have to get up at 5 am.🙂 That changed by the time I was 8 or 9, though.

      I know what you’re talking about with the sunlight in winter. This has been more of an issue since I’ve been living at a higher latitude, but it could be a problem before that. I try to at least open the curtains and blinds to make sure I get some through the windows, even if I don’t make it out of the house before dusk. Have you tried a light box? Mine helped some, but it’s been out of commission so far this season, since I can’t find where the cats knocked the front panel and prefer to keep my retinas unseared.🙂

      in a rational society, where “work” wasn’t structured in such authoritarian and social-control-oriented ways, it wouldn’t matter at all (unless it mattered to the individual)

      I definitely agree. Turning this kind of thing into a moral issue and/or one cloaked as a psychiatric symptom is ludicrous.

  4. January 5, 2010 9:53 pm

    Oh, i also meant to say re the bedtimes/depression study – did they look at which way the cause/effect goes? It looks like one could just as easily assume from that correlation that depression causes difficulty sleeping as that inadequate sleep results in depression – or, indeed, that both those things are caused by a third thing – such as, in their sample, the kind of toxic and stressful relationships with parents that result in teenagers needing to spend time alone and awake after their parents go to bed to “detox” from them…

    • January 7, 2010 2:25 am

      …the kind of toxic and stressful relationships with parents that result in teenagers needing to spend time alone and awake after their parents go to bed to “detox” from them…

      This is a good point! Funnily enough, I have this need, and I have terrific relationships with my parents. I’m just enough of an introvert that I need to have time every day when there’s no one else stirring in the house.

      (And, no, I don’t think living alone is the answer; my self-care skills aren’t at the level needed to make that work).

    • urocyon permalink
      January 7, 2010 3:19 am

      I didn’t have time to reply to this one earlier, but I also wondered about which way that one was really going.

      The need for alone time, usually after other people had gone to bed, was particularly obvious when I was living in a really stressful environment, but I seem to have it under other circumstances. Last month, Nigel took the whole month off to keep from losing the holiday time and was home most of the time during the day, so I frequently ended up staying awake later. I wouldn’t be surprised if the need for some down time alone did have something to do with a lot of kids getting to sleep later than they might otherwise.

  5. robert roberto mergotroid permalink
    June 2, 2015 8:19 am

    my dspd is effecting my dog…crazy isn’t it? he’s got my sleep hours of 9am to 5pm,,trazodone and lunesta have been my routine at bed time now for several years.While many people with dspd might not want to resign to unemployment and collect total disability,i had no choice..having anxieties on top of the dspd,if I have anything planned,even as much as a date for coffee with someone,i won’t sleep at all..so if one can’t sleep,one can’t work..that wouldn’t last for 3 or 4 days before one would be in the hospital..(and it has almost occurred in fact)..I wouldn’t wish dspd on my worst enemy..i don’t hate anyone THAT much!

  6. ricky agnew permalink
    November 24, 2015 10:23 am

    i thought i had delayed sleep phase disorder but fits also in alignment with non 24..i’ll be awake ,sooner or later ‘around the clock’ visiting each period,awake then sooner or later,asleep at those same periods and awake at the times i was previously sleeping a week or days or a month ago..I’ve had many of those times that i’ve slept around the clock literally and wound up in a week or so (or more ) going to bed again at the same time again.. this kind of thing has been repeating since 1980..i was diagnosed as bipolar but have always known i have an accompanying sleep disorder as well..and sometimes i wonder if i just have the sleep disorder and was misdiagnosed..am also diagnosed as having severe anxieties..this sleep thing has been hell..living in an apartment is not the place to live with this sleep condition..too many neighbors with preconcieved notions based on my lifestyle over it..been accused of being drug user,seller,narc,thug,undercover cop,etc..landlords want in at times that are inconvenient and downright kept me awake and caused suffering..socierty doesn’t have any understanding for invisible disabilities..finding a serious romantic partner is impossible(at least in my case)..this condition is horrid..i’m used to the condition but it keeps me lonely as hell none the less!!

  7. ricky agnew permalink
    November 24, 2015 10:34 am

    as i mentioned above,the sleep thing is misunderstood by society..have any of you that have this sleep disorder been able to have serious relationships ??if so,please give me advice..women i’ve become interested in (for the past 20 years)don’t have any tolerance for a man that doesn’t hold a job,regardless of the reason.and the sleep disability renders me useless if someone is relying on me as being somewhere for absolute certain day or night..even though i’m more likely to be awake all night and sleep days..that’s my current routine now for weeks..sleeping 9am to 5pm or thereabouts..sometimes an hour to bed later and sleeping an hour later for it..depends…that could change anytime..i might not get sleepy until 11am or 12 noon sooner than later..taking my sleep meds when not sleepy doesn’t work well..i don’t stay asleep and then am in bed longer or get up and stay awake, and that REALLY messes stuff up!!i hate this condition..like i said i’m used to it and work with it easily enough,but i remain totally lonely and alone because of it..even acquaintances don’t eventually become good friends as they don’t understand it

  8. May 21, 2016 10:19 am

    Re-reading this post and its comments six years later, I realize that one desired change does seem to be occurring! Quoting a comment above: “…re the bedtimes/depression study – did they look at which way the cause/effect goes? It looks like one could just as easily assume from that correlation that depression causes difficulty sleeping as that inadequate sleep results in depression…” There is progress, if slow.

    The US NIH and the various disease classification manuals tend more and more to consider these conditions as comorbidities rather than the one being secondary to the other. In addition, NIH units* involved with sleep seldom mention sleep without the addition of the word circadian: “sleep and circadian research”.

    Also, the non-profit organization CSDN**, only four years old, now has a “patient representative” member on the SDRAB.

    *SDRAB, the Sleep Disorders Research Advisory Board, within NHLBI, the National Heart, Lung and Blood Institute, within NIH, the National Institutes of Health
    **CSDN, Circadian Sleep Disorders Network, http://www.CircadianSleepDisorders.org

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