November 24th was N24 Awareness Day and in true N24 style, I missed getting this post out on time.
N24, or Non-24-Hour Sleep-Wake Disorder, is a serious, incurable circadian rhythm disorder. Circadian rhythm disorders are neurological conditions in which the body is not synced with the natural 24-hour day like most humans.
Some people might describe themselves as night owls or morning larks, but beyond those relatively small differences, the typical person is mainly awake in the daylight and asleep at night. Some of us, however, have something glitchy in our wiring that makes us not able to keep to the sort of schedule typical people — and thus most of the world — keep.
This is especially important for us Autists because the genetics of autism tend to go hand-in-hand with the genetics of circadian rhythm disorders. No one knows for sure how many of us Autistic people have circadian rhythm disorders, but they are far more common among us than in the general population (although plenty of people with circadian rhythm disorders are not autistic.)
If you’re confused about what N24 is, you can read a good layman description of it here: What You Need to Know About Non-24 and you can read a Scientific American Mind article about my own struggle with N24 here: Out of Sync. (Out of Sync was written before I came out as Transgender so the pronouns and name will not match how you know me today.)
What I want to say today is that people in the helping professions — especially those who work with an Autistic population — need to understand N24 because it has a direct impact on the kind of help we need and the kinds of help that will not be useful for us.
N24 has meant that I cannot keep the sort of schedule required to go to school or work a regular job. I had to drop out of graduate school in 2013 because of N24. I went to my state’s Department of Vocational Rehabilitation to get help and was turned away. Because I cannot keep a regular schedule and punch a time clock, the counselors at VocRehab were unable to help me. Their advice was just to get used to living on disability because that was all I could hope for.
That is an unacceptable answer.
Am Autistic leader had another answer for me: get a really good alarm clock. She knew nothing about circadian rhythm disorders and assumed, like so many do, that I am just lazy or undisciplined. To her thinking, if I couldn’t get up for school or work every day I just needed a really loud alarm clock to get me out of bed. That is like telling someone with narcolepsy to just drink some coffee or telling someone with epilepsy to just hold off and have their seizures when they get home.
That was also an unacceptable answer.
I can stay more-or-less entrained by living outdoors. That might mean I could work as a park ranger, but even that would be difficult because I have to sleep outside, too. Right now I migrate with the seasons. I keep myself, as much as possible, in places where the temperature ranges between 40 degrees and 80 degrees Fahrenheit. That way it is safe for me to stay outside for as many hours of the day as possible. I had to come up with this solution by myself because people who help disabled people are never trained to think of a solution like living outside to get enough light or migrating with the seasons to stay warm/cool enough to live outside.
If I ever manage to become financially successful enough to build my own house, I’d like to live in a specially designed greenhouse — a variation on the Naturhaus — in Colorado where there is a lot of sunshine. The greenhouse would let sunlight in, to keep me entrained and keep winds and cold out so that I could safely live “outside” year ’round. This is a solution I came upon after years of thought and research. I am very pleased with this solution and hope I am able to achieve it someday.
All the professionals whose job it is to help me with my medical issues or with my government disability benefits either try to talk (or force) me out of my current lifestyle or only grudgingly accept that I have chosen to live in my minivan. Helping professionals need to learn that circadian rhythm disorders are real conditions, have no cure, and are not brought on by laziness, stubbornness, or willfulness. Likewise, no amount of self-discipline can “train” the N24 out of me. It is a permanent neurological difference that I must learn to accommodate for the rest of my life.
Since leaving graduate school, I have developed a fresh life plan. I am applying to a low-residency MFA program in Colorado. I will have to be present for two weeks in the summer and one weekend each in the fall and spring semesters for the next two years. The rest of my work will be done long-distance, through online study. If I am accepted into the program, I will spend the rest of my year camping in New Mexico (summer) and Arizona (winter), working on my classwork at a table set outside in the sunshine.
I had to devise this life plan all alone and, other than academic financial aid, I will have to fund it by myself. Because I won’t be able to stay in one state all the time, which is a Medicaid requirement, I am getting my passport in preparation for buying affordable insulin in Mexico. I am grateful that I have been clever and resourceful enough to figure out a way to move ahead with my life despite this very real and very limiting disability — my N24 is far, far more disabling than my autism at this point in my life — but I am also displeased that the systems and helping professionals who are supposed to support and assist me as a multiply disabled person have failed me so badly because of lack of understanding of circadian rhythm disorders.
This N24 Awareness Day, our theme is Through the Looking Glass, because being so far out of sync with the rest of society feels like stepping through a looking glass into a confusing Wonderland where normal things become strange and foreign to us. N24 too often makes us strangers in a strange land, understood by no one, often not even ourselves. I would like to invite all helping professionals to peer into the looking glass and strive to understand what life is like on our side of that invisible barrier. You cannot help us until you are aware of our realities and work to understand what circadian rhythm disorders are and what sort of limits they present.
If you have a patient or client with N24 (or any circadian rhythm disorder) please learn more about what they are going through and what sort of assistance is going to be useful for them. Please wait to judge an unusual lifestyle until you have more information about what problems that lifestyle has been constructed to address.
To so many people, I look like a devil-may-care, irresponsible hippie coasting through life by indulging in an alternative lifestyle. What I actually am is a dedicated and driven individual who has been forced to think outside the box in order to keep reaching for my goals.
While N24 is rare, it is much less rare among people with developmental disabilities, so there is no excuse for not learning more about it. Helping professionals need to understand circadian rhythm disorders.
Thank you and happy (belated) N24 Awareness Day.