We all have a body clock that takes about 24 hours to cycle.

In fact, a classic Harvard study measured it to be 24.18 hours.

But 24.18 hrs is longer than our 24.00 hour day.

If we don’t do the usual things we do in a day - that is, stay indoors, limit our movement, and don’t get much light - our body clock will drift later and later each day.

And that’s what scientific experiments have shown.

Below is a graph showing two different people. The grey horizontal bars show the sleep of someone who sleeps well - the black horizontal bars show the sleep of a self-confessed ‘Night owl’.

As you can see, sleep drifts later and later for both of them.

But notice that the Night Owl drifts much later?

This is what happens when someone stays in a sleep lab. Where there are no windows. No clocks. No idea of what the time is. And they don’t do their usual tasks (eg, get up and get ready for the day).

So these experiments confirm that we need to keep a regular schedule in the morning so that we can maintain a regular sleep-wake pattern.

But it gets worse …

So imagine my surprise when I saw a 14 year-old teenager who came to my clinic, and showed me what her sleep had been like for the past 2 years.

As soon as I saw this teenager’s sleep diary, I knew what the diagnosis was.

Even though she was living at home, her sleep pattern was exactly like the Night Owl in the picture above. The time she was asleep each day changed. The time she was awake changed every day.

I diagnosed her with Non-24-Hour Sleep-Wake Disorder (or Non-24-SWD).

Instead of a 24.18 body clock - people with Non-24-SWD usually have a body clock >25 hrs.

This teenager began having sleep problems at the very end of primary school. It was so bad that she didn’t go to school.

Heck, it was so terrible she had not been to high school in the past 2 years.

Or to put it another way - she had never been to high school.

Top 1%

I’m considered a sleep expert - but even more so, one of the most prolific circadian rhythm (aka, body clock) disorder researchers.

Within the top 1% in the world. Here’s some proof (number 5):

I set out studying the sleep patterns of teenagers, and invented treatments for Delayed Sleep-Wake Phase Rhythm Disorder (ie, an extreme Night Owl).

If you were a parent who had a teenager who fell asleep after midnight - and struggled to go to school - then the treatments we were providing were the ones to help change your life.

But Non-24-SWD is much worse. And far more rare.

I’ve seen about half-a-dozen such cases from 2010-2020.

The Blind leading the Blind

Non-24-SWD usually occurs in blind adults.

You see, light is our sleep’s ‘stopwatch button’.

Your eyes see light in the morning, and even if your body clock still has some time left to finish, light hitting the eyes virtually resets the body clock timer to 0:00.

Thus, if you’re blind, you can miss this function.

But all of these teenagers I saw with Non-24-SWD could see.

I’ve tried hitting this rare sleep disorder with everything I know.

Whilst we’re really successful for treating Delayed Sleep-Wake Phase Disorder (80-90%), my strike rate for Non-24-SWD is about 50%.

You may as well flip a coin.

This means there is only 1 more treatment option left for these teenagers whose sleep constantly goes around the clock.

Adaptation

That’s right.

There was a case study published of a 30-year old adult male who had untreatable Non-24-SWD.

What he did was live his life around his moving sleep pattern.

He studied and became an IT consultant.

So he worked when he was awake. Which was different every single day.

Don’t fight it.

A couple of studies we did a few years ago showed us something interesting.

For people whose sleep pattern didn’t fit into the typical 9-to-5, they had 2 options.

1. Accept this is the way, and thus deal with it better.

2. Or - always struggle against it, and quite possibly develop an array of emotional issues and personality disorder traits.

Thus the last resort treatment I provided some of the Non-24-SWD teenagers was to accept their sleep pattern. Adapt to it.

On such teenager did.

But she was so fatigued from her condition that she did not have the energy and concentration to study.

So she applied for a disability pension when she turned 18 years old.

And her application was denied.

And her initial appeal was denied.

These rejections were for various reasons. But some of these reasons were around the doubt about her Non-24-SWD diagnosis.

We Fought the Law (and the Law Won)

This teenager’s family reached out to me when the Non-24 diagnosis was being criticised (at least one doctor and lawyer claimed she had depression - and later on autism).

So I wrote a letter, describing this teenager’s symptoms and how they matched Non-24-SWD.

And furthermore that treatment was ineffective for her.

Her appeal was denied again.

The family had one more final appeal.

So they escalated the request. This time I gave evidence as an expert witness.

After 2.5 hours of questioning - my qualifications, my expertise, my research, my diagnosis, my treatment - the judge stated:

“The credentials which Professor Gradisar has as a clinical psychologist to make a diagnosis of a psychological condition and to provide treatment through psychology are not in doubt. He has expertise in a specialised area involving sleep disorders. The evidence suggests that he and his colleagues at the clinic are at the forefront of research into rare disorders such as N24SWD. However, in the context of a claim for a Disability Support Pension, a diagnosis by a psychologist is not sufficient to meet the requirements of the Rules for applying the Impairment Tables in relation to this condition. Rule 6(4)(a) requires that the condition has been fully diagnosed by an appropriately qualified medical practitioner.”

COMING FULL CIRCLE

Research can improve our lives:

1. It can inform us how to better diagnose conditions.

2. It can inform us of how to best treat conditions.

3. It can also inform policies to help those who need the help.

Unfortunately in this case, a psychologist and a policy failed to improve the life of a teenager. And her options in life are very limited.

When one works as a health professional, we sometimes look back at the early part of our career. We think about some of the cases that were not successful. We wish we could go back in time - knowing what we know now - and help them.

In 2020, with this case ending up in a legal defeat, I’ve come full circle.

I can only hope that I - or others - will learn more about one of the most fascinating yet debilitating sleep disorders on earth.

And that one day the success rate for Non-24-SWD will be much more than 50%.

• Prof Michael Gradisar