Too Many Hours

A sleeping woman in an orange dress with the words N24 Awareness Day 2014Today, November 24th, is N24 Awareness Day.

While this is not specifically an autism topic, it is most definitely an autism-related topic. N24 (Non-24-Hour Sleep-Wake Syndrome, or hypernychthemeral syndrome) is a circadian rhythm disorder (CRD). “Circadian” means “about a day” and the circadian rhythm is the body system that keeps people in sync with the 24-hour day and the natural cycles of light and dark on our planet.

The main part of the body that keeps track of time is a part of the brain called the suprachiasmatic nucleus (SCN) but every cell of the body has a “clock” in it, even blood cells. You can think of the entire body as a sort of symphony of time-keeping with the SCN as the conductor and the sun (or light in general) as the musical score.

When a person has a CRD, something about the orchestra is broken. One example is Delayed Sleep Phase Disorder (DSPD) in which the conductor can’t stay on the right part of the score, so the person wakes up too late and can’t get to sleep on time. DSPD is often mistaken for insomnia but it’s not really, because a person with it can sleep just fine and for a full amount of time if they are allowed to go to bed very late and wake up very late.

Another example is the opposite – Advanced Sleep Phase Disorder (ASPD) in which a person wakes up too early and goes to sleep very early. In both cases, DSPD and ASPD, it’s not a preference. The person with one of these disorders can’t help it and no matter how hard they try to sleep on a normal schedule, it won’t work unless they get very specific treatment for the disorder. Just an alarm clock will never be enough.

N24 is a very serious CRD in which the conductor has broken so much that you could say there are extra bars inserted into the musical score — too many hours. The brain functions as if they day is longer than 24 hours and so the person with N24 can’t keep to a 24-hour schedule and “slips” around the clock over time. Depending on how long the brain’s day is, a loop around the clock could take anywhere from a couple of weeks to a couple of months to complete. During half that time, the person is sleeping in the day and awake at night. It is isolating and makes it difficult or impossible to keep a job, friends, even doctor’s appointments.

butterflies escape a broken clock with the words think there aren't enough hours in the day? There are too many in ours.

Why is this an autism-related topic? CRDs are three times as common in the Autistic population as they are in the general population. Sleep, generally, is a big autism topic with as many as 3/4 of Autistic people having some kind of sleep problem.

I am Autistic and also have N24 and I would have to say that the N24 is more disabling as far as working goes than the autism. There are employers who are willing to work with the needs of Autistic employees and there are accommodations that could allow me to hold on to a good job. But it is nearly impossible to accommodate an employee with a disorder that makes it impossible for them to even show up for work at all half the time.

There are treatments that hold me on a 24-hour schedule, but they require me to split my sleep in half so the best I could do would be to work half-time and then it would all fall apart the first time I got sick because I can’t hold on to entrainment when I’m sleeping off the flu and so I lose my 24-hour schedule and have to wait a month for my sleep to cycle back around before I can start therapy again and hold myself in that 24-hour schedule again.

I know other Autistic people with N24, but most of the people I know with N24 are not Autistic because even though we have three times the chance of developing it, there are about 99 times as many non-autistic people so there will always be more of them with N24 than there are of us Autistic N24 folks. So it really isn’t an autistic condition, just one of many health issues that we are more vulnerable to, due to our neurotype.

So, on this N24 Awareness Day, what do I want you to be aware of?

  • N24 exists, it is a real condition, it is seriously disabling and very hard to live with.
  • If you know someone who just can’t seem to get up in the morning and can’t seem to go to sleep at night, learn more about CRDs and try to have some empathy for their struggles — above all, don’t call them lazy! Sleep issues are not a matter of laziness. We have very little control over how our body responds to sleep.
  • If you are an employer, think about ways you might be able to hire someone with N24. Even though it’s a relatively rare condition, there are hundreds, possibly thousands of us and nearly all of us are unemployed against our wishes. If you have a job someone could do even though they are incapable of keeping regular hours, you could end up with a very loyal and productive employee if you consider giving someone with N24 a chance.
  • There are treatments but they are complex, time consuming, expensive, and not 100% effective. Don’t assume that treatment will always work perfectly and don’t blame us or try to make us feel guilty when our treatment falls apart or doesn’t make us able to work, despite all the effort we put in. Treatment can fall apart and many of us are still quite exhausted full-time, even when we are able to get our bodies into a 24-hour schedule.

Thank you for reading. If you think you or someone you know might have a CRD, a useful resource is the Circadian Sleep Disorders Network. There is a lot to explore on the site and if you have a CRD yourself, you may find information that will completely change your life there.

Advertisements

11 responses to this post.

  1. […] Click here to read the whole entry […]

  2. Reblogged this on ramblings of an autistic wordsmith and commented:
    I didn’t know there was an N24 Awareness Day, which goes to show just how *un*aware we are about this. I’ve never been diagnosed, but my lifelong struggles with sleep point very clearly in the direction of N24, a disorder I had no knowledge of prior to following Unstrange Mind. It’s a relief to know that my struggles have been (and are) real.

  3. Great post and very informative. I’m sorry you have this problem :-( I have some kind of sleep disorder…I rarely can sleep eight hours straight.

    Did you draw the butterflies and clock? That is real cool!

  4. We are overjoyed to read this post! My daughter (7) has this, and she is excited to know there is another person out there just like her. She too has autism and (we think) N24. She wants to know if you can share more about you, we have never heard of anyone else who has this. She is excited to find another person who might know what it is like. Thank you for posting this!

    • oh! Hello to your daughter! I know how exciting it can be to find someone else who is like you after thinking you were the only one.

      I know the mother of a few other kids around her age who have N24, too. I will write more about what it is like for me, living with N24, soon.

  5. Thanks for this wonderful article. I wish we could touch EVERYONE so afflicted immediately! We do what we can, right?

    I remember when, like Tami Booth’s daughter, I was positive that I was the only person afflicted with what I then referred to as “Rip Van Winkle Syndrome” (since my extreme fuzziness on “awakening” seemed more the problem than being unable to sleep until the wee small hours of the morning).

    It took me YEARS to find others so afflicted, and I was overjoyed and dismayed in equal measure at my discovery.

    BOY do I agree with your assertion that N-24 is far more difficult to accommodate than my other neuro-atypical struggles.

    I have linked this article, by the way, to my own N-24 2014 post, and have pinned your top graphic (which links here) to my “Sleep, Sleep Disorders & EFDs” Board on Pinterest.

    My first person with N-24 is linked to my own N-24 article this year. Be SURE to let me know whenever you write yours – I’ll help you get the word out.

    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    “It takes a village to educate a world!”

  6. This type of sleep disorders is not good for our health. We need to wake up and to do something that helps to recover from this disorder.

Comments are closed.

%d bloggers like this: