Today, November 24th, is N24 Awareness Day, a day set aside for raising awareness of non-24-Hour Sleep-Wake Syndrome, a rare and serious circadian rhythm disorder that anyone can have, but that is more common among Autistic people and much, much more common among totally Blind people. This year, we have a theme: Think Zebras.
In medical school, doctors are told, “if you hear hoofbeats, think horses, not zebras,” meaning think of a common cause for the symptom picture that is presenting, not a rare cause. Rare conditions are meant to be diagnosed through a process of elimination, treating them as if they were common conditions and only looking further if the common treatment does not relieve the symptoms of what was presumed to be a common ailment, then the doctor can venture closer to thinking of zebras.
N24, especially in people who are not Blind, is an extreme zebra. We really don’t know how many sighted people have N24, but the National Institute of Health (NIH) has only studied two people with N24. Ever. Today is a day to bring more awareness of N24 to doctors and to the general public. It may be much more common than we realized.
I travel around the country and often have occasion to mention N24, especially since an article about it (featuring me) came out in Scientific American Mind last month. I have been shocked by how many people I have met who have strong signs of N24 or know someone with strong signs of it. It is the same story each time: the thrill of recognition, the surprise to learn that others have it a well, the strength that comes from a name, from knowing where to turn for more answers.
But I don’t just have a zebra (N24), I also have a giraffe (autism) and the two together get up to quite a bit of mischief.
Because I have learned that when a person has a giraffe, their zebra often becomes invisible. So many of the symptoms are dismissed as being just an unusual part of the giraffe. It can be really hard to get serious attention for a horse, even, let alone a zebra.
So if you can’t sleep well? Autism. Your stomach hurts? Autism. Your joints are loose and floppy and dislocate easily? Definitely autism. It’s like trying to get treated for depression while elderly. Because of the pre-existing giraffe, the zebra is not merely mistaken for a horse but becomes invisible altogether.
So if you or the Autistic you love (or the Autistic you treat as a patient) complains of some health issue, resist the temptation to discount it as part of autism and look more closely. Don’t let the zebras get away!