Non-24 Awareness Day! (Part 2 of 2)

November 24th is...

For Non-24 Awareness Day, I’m sharing interviews with two people. The first was in my last post with Yosuke. He lives in Japan and has had a diagnosis for over 20 years. This one is with a mother of a Non-24 child (Sunny, a pseudonym), who shared their family’s experience and also words from her teen. 

I hope you will find these interviews informative. Since Non-24 Sleep-Wake Disorder is considered rare in sighted people, it’s often overlooked or dismissed as a diagnosis. 

Could you share a bit about how you found out your child has Non-24? 

Yes. When I received your e-mail with the question above I actually could not pinpoint the time I figured out my child had n24. Nights bled into days and days bled into nights, my mind traveled down Sunny's early childhood and marked all hints of n24 in my mind, mixing and confusing the timeline. But then we had a long-awaited appointment with a sleep neurologist Sunny saw for the first and only time at the age of 12. At that time Sunny was diagnosed with DSP (Delayed Sleep Phase) and the doctor casually suggested that homeschool might be the only option. I really liked that doctor but very shortly after she read our sleep study, which was normal, she left the practice. Fast forward 6 years later, I saw her name and her face in the newsletter from another local hospital network advertising her new pediatric sleep neurology practice. I called and scheduled an appointment at which Sunny was officially diagnosed with n24.

Only during an 1.5 hr appointment, after answering countless behavioral and sleep history questions, I remembered how I found out my child had n24. Sunny dreamt of independence and, specifically autonomous living. At 16, they graduated from homeschool High School with several college credits and a perfect GPA in college and high school classes, and a large scholarship offer to the local Art College with a national name. Sunny was excited to move to the dorms and to start their college experience. With a previous diagnosis of DSP and a recent memory of Sunny staying up for 48 hrs to get on the same schedule as a college class or as their friends’ event, I knew that Sunny will have problems with their sleep in college but hoped that the sleep discipline would emerge from Sunny’s deep-seated desire to be a college student. Sunny tried. 

But every time they could not go to sleep or had to wake themselves up with only 2 hours of sleep, they got an excruciating migraine which forced them to miss a class.  The school had a policy that 2 missed classes result in a lower grade and 3 missed classes result in an academic probation. Sunny would have lost their scholarship if the grade was lower than a B. We had engaged with a school in an unending communication about proper accommodations but the school did not budge. And after 2.5 months at college Sunny came home. Sunny was sick and drained. Coincidentally, they were finally diagnosed with MCAS and active mold poisoning which required a difficult treatment with lots of side effects in the first few months. Sunny and their treating physician decided that the next 3 months of their life, before the spring semester starts, they need to only concentrate on mold detox. This meant that I let them be. I let them sleep and eat at whatever times they preferred. I let them do whatever they choose to do. In other words, they had full permission to free-run for the first time in their life. 

If free-running started in October, then by December I noticed a pattern very different from originally diagnosed DSP. Sunny would have one week of staying up at night and about one full week of staying up during the day with a week of something in between sandwiched between those two. This pattern repeated twice by the end of that year and I started googling. I do not remember clearly but I think my first search query was something like “sleep disorder wake at different times”, and “sleep disorder chaotic sleep time”. Thinking back, I am surprised that these search queries produced good enough results that allowed me to find n24. And my eyes were opened. Mid-January, I knew for certain that my child had n24 but I wanted to track their sleep for a few more months before sharing my findings with them. My realization was overwhelming to me. Because the belief, that things are temporary and things will change once Sunny matures more or once Sunny finishes the mold detox protocol, no longer was grounded in reality. We had to find other beliefs that would give us hope. 

I am curious about how life is now for Sunny. Also, is there anything they'd like the public (including doctors and sleep specialists) to know about Non-24?

I asked Sunny your questions. They said for them life is normal because they have learned how to accommodate their life by adjusting expectations of what it means to be successful and what it means to be autonomous. From my point of view, although I could be wildly mistaken, Sunny had an easier time with adjusting their expectations than me or their dad. We still struggle with this. Sunny envisioned a life in which n24, and autism, are fully incorporated and supported in a way that does not create any friction or additional burden. They talked about befriending the internet as their best resource. They go to college online. They have friends who live in different timezones online. This means that they can have conversations with one of their friends at any time of the day or night. For a very long time I was devaluing internet friendship pushing my kid to experience real-life presence of other human beings in the same room. And they tried. But they do not crave a lot of sitting together time with other humans outside of their parents (for now), they crave meaningful activity together which is difficult to get in NT (neurotypical) world. With rare exceptions of a very successful in-person D&D campaign, my kid truly gets more value from deep and long-lasting online friendships. 

Sunny knows that because of their multiple comorbid conditions, with n24 being the most inflexible and unchangeable centerpiece, they are barred from any unskilled employment that young people get into during college years. Sunny tried working in a grocery store and was taken off the schedule after 3 weeks due to a very restricted availability. However, if Sunny gets into a position of a highly valued specialist in a specific industry, for them it is film and media, they can enjoy relatively high income, flexible work time, and project-based employment. The path to position oneself as a highly valued specialist in any industry can be long and arduous and, without our support, Sunny would have a hard time getting there. Sunny had to come to terms with this too. Teenage rebellion is very difficult with n24. 

Another aspect of living with n24 in the States is mobility and physical accessibility. We live in midwestern suburbs which means most of the streets around our house do not have sidewalks and are not lit. And most of them lead to even larger streets without sidewalks. Sunny cannot walk outside at night when their day flips to hours between 8 pm and 10 am. They cannot access grocery stores, pharmacies, malls or any other social places for 50% of their waking time. The only help is the internet. We are looking at a city living for Sunny. Searching for a city that doesn't sleep as long as any Midwestern town does and has accessible public transport and can be affordable to a disabled young adult. We could not find any city like that in the US. Another avenue of research are northern European countries that enjoy unconventional light cycles, with much longer light days in the summer and much shorter light days in the winter. From what we read, these communities are not as attached to the normal 24 hour day cycle and their stores, schools, and libraries have more flexible working hours. I am not certain if it is true. We are yet to visit. 

When I asked Sunny what advice they would give to kids and teens newly diagnosed with n24, they said: “Learn to plan”. Sunny is still learning how to plan. I am there to handle the brunt of planning for now but I see how they are getting these skills slowly but surely. I met a very successful n24 sufferer online. They had several high level careers in IT and now teach at a university. They told me that the university offers accommodations to them by allowing them to teach their normally 12 pm course at 7 pm one week per month. This professor told me that the skill that made the single biggest impact on their quality of life is ability to plan equipped with the factual data of their sleep. 

As to what to tell doctors, Sunny had a general statement born out of multiple medical traumas experienced on their way to diagnosis and proper medical care: “Believe your patients! Stop saying ‘It's all in your head’ like this is a valid excuse for your ignorance or lack of attention.” I would add, please know, n24 is not a choice, it is a biological fact. 

Much gratitude to Sunny and their family for sharing with us!

Naomi Mittet is a board member of the Circadian Sleep Disorders Network. 

For more information about Non-24, check out the Q&A page from Circadian Sleep Disorders Network: https://www.circadiansleepdisorders.org/docs/N24-QandA.php