Tuesday, February 12, 2019

Delayed Sleep Phase Syndrome and PDA



What is DSPS?
DSPS (Delayed Sleep Phase Syndrome); also sometimes called DSPD, and DSWPD (Delayed Sleep-Wake Phase Disorder), is a circadian rhythm sleep disorder which causes an individual's sleep-wake cycle to be significantly later than the social norm. An individual's sleep delay may be anything from a few hours later than society's average (for example, sleeping from midnight until 8AM) to – in very extreme cases – over twelve hours later (e.g., sleeping from midday until 8PM).




It is common also for DSPSers to need more than eight hours sleep per "night", causing their natural wake times to be even later than might be expected following their already delayed sleep times.

Additionally, DSPSers commonly experience extended sleep inertia, whereby our brains are slow to fully wake. Sleep inertia may last from one hour to several hours. During this time, the individual will feel groggy, verbally limited, and clumsy. As well as causing sleep-deprivation, being woken before the circadian clock's wake time, for example for school or work, can exacerbate sleep inertia.

Sleep-deprivation caused by trying to fit society's time schedule can result in major health issues, including cancer, fibromyalgia, diabetes and heart disease. On a personal level, ongoing sleep deprivation caused me to develop long-term chronic fatigue syndrome and a major autoimmune disorder, which nearly killed my newborn baby when my bad antibodies passed to her. So, the common mythconception that it's healthy to force oneself up early every morning is very incorrect.

What causes DSPS?
DSPS is caused by the body's internal clock, not by insomnia; lack of self-discipline; poor sleep hygiene; anxiety; or other psychological issues: although this is not to say that these things cannot exacerbate circadian rhythm-rooted sleep delay.


DSPS as a Neurological Condition
Although circadian clocks exist within every body cell, DSPS can be thought of as neurologically-rooted (like ASD, PDA, and ADHD), as the master clock coordinating these cellular clocks is located within the brain.

Co-occurrence with other neurologically-rooted conditions
There are definite, scientifically proven links between circadian rhythm sleep disorders and more clearly neurologically-rooted conditions, such as ADHD and autism. For example, Dr Alexander Nesbitt, Guy's Hospital neurologist, writes  "well-known co-associations exist between DSWPD and neurodevelopmental disorders such as attention deficit hyperactivity disorder (ADHD) and autistic spectrum disorder (ASD)... Patients with ASD have a high incidence of sleep disorders, including circadian rhythm sleep wake disorders, of which DSWPD is the most common phenotype." (Nesbitt A, "Delayed Sleep-Wake Phase Disorder" © 2018 Journal of Thoracic Disease. All rights reserved. Link to full article )

Co-occurrence of DSPS and PDA
Although I am aware of no formal research into the co-occurrence of DSPS with PDA, I gathered comparative data of sleep problems reported by neurotypicals, non-PDA autistics and PDA adults as part of an informal study I carried out in 2016. This data suggests that PDA adults experience more sleep issues than the other neurogroups included in the study (please see the bar chart below). Although the precise nature of sleep problems was not queried, Nesbitt, (quoted above) similarly cites instances of unspecified ASD sleep disorders. Further, I have encountered large numbers of PDA adults, and parents of PDA children reporting co-occurring DSPS. It therefore seems probable that the DSPS has high co-occurence with PDA.


On top of DSPS, my PDA demand avoidance causes me to want to avoid going to bed and getting up. Anxiety has also caused me to be insomniac, but I have learned to manage this so anxiety-induced-insomnia is no longer a factor.


Living with DSPS 
I have experienced severe sleep delay since early childhood. I clearly remember the trauma I had every night lying in bed unable to get to sleep; and being terrified that monsters would get me; even that I'd never wake up if I did go to sleep. Yes, there was high anxiety there, but this alone did not account for my inability to get to sleep quickly at night even if – as I invariably was – I was extremely sleep-deprived and tired. As a younger child, I would often scream in genuine terror, and my mother or step-father would come to soothe me, even take me to sleep in their bed. I felt safer then; but they grew impatient with this, and decided I had to learn to sleep on my own. All I though learned was to pretend I was asleep if came to check on me so they wouldn't be cross.

When not overcome by terror, I was excruciatingly bored. I would blur my eyes looking at the streetlight outside my bedroom window to produce optical effects (there were no distracting smartphones around in those days). I also had a travel alarm clock with luminous dots on its face and hands. I liked their pretty blue-green colour, but realising the creeping lateness of the hour caused me additional anxiety too; and besides, the luminosity wore off before long, and the streetlight went off at around 1AM, leaving me awake in the dark with nothing but my imagination for company and, on good nights, our cat. My PDA propensity for fantasy was my saviour here: as well as conjuring a whole host of terrifying imaginary monsters, my creative PDA brain was adept at inventing vivid soap opera-style serial daydreams, of which I was the glittering and popular star. These "life dream" soap stories helped me wile away countless sleepless hours.

Once finally asleep, however, I wanted to stay that way; or at least until I'd had enough sleep time for my body and brain's needs. However, there was school to go to and my parents would demand I got up for it. Their efforts to break my sleep felt exactly like physical assault. My brain and body screamed that I had to sleep. My bed – such hostile territory five hours before when I couldn't get to sleep – was now indescribably comfortable and warm. It was my blessed cocoon, and my parents' insistence that I leave it, and force myself to function in the waking world felt compassionless, unfair and aggressive. It would have been easier if I'd enjoyed school even slightly, but school was a whole other circle of Hell for me and the prospect of losing the sleep I craved in order to be imprisoned, humilated and bullied at school had less than zero appeal for me. Weekends were something of a reprieve, but my mother was convinced I was wasting the day away if I wasn't up by nine-thirty and harassed and guilt tripped me relentlessly to get up and embrace life. She was not the sort of mother who listened if I told her I'd not been able to get to sleep until two or three AM.


Once, reluctantly, out of bed, I felt like Hell on Earth. My whole body was in pain; my brain felt scoured by barbed wire and light assaulted my eyes like a torture device. On top of all this, I had extreme sleep inertia (as described above), so I could not properly form thoughts or words. I deeply resented having been forced out of bed and every part of our morning routine. It was during these times that I was most likely to go into what is thought of as classic PDA meltdown. I remember many occasions when, after a family member had encroached on my space before school, I would react defensively without really being aware of what I'd said or done and they would react back with high horse outrage at my extreme and unmerited bad temper. This just made me feel even more shit: I was a thoroughly bad, totally unacceptable misfit, and the world's expectations of me were completely out of synch with what I could comfortably give.

So off I'd go to school... well, to be honest, I would do everything in my creative power to avoid going to school and get back into bed. As a younger child, as crying and begging didn't work, the only available option was to feign being ill. I learned that the best illnesses to claim were head and stomach aches, as they entailed no external symptoms ofor my mother to call me out for not having. I also sometimes rubbed my forehead rapidly with my hand before she came in the room to make it feel fever-hot. She called me out once when I said I had a really sore throat and took me to the doctors, but – to her horror – he said I had mumps and both myself and my brother had to be quarantined at home for several weeks. My agonisingly swollen throat was so worth it for the uninterrupted sleep time it gifted me (and the fact that my mother never dared question my ill health stories again!) If, however, my mother sent me to school regardless of whatever "bad tummy" or headache" I'd claimed, I would tell my teacher that I was feeling really ill and try to wangle being sent home to bed. When older, I extended my school avoidance repertoire to sick note forging, but this is another story.

I have not spoken to a single DSPS adult who has not reported having experienced extreme prejudice and discrimination for their delayed circadian rhythm. From closest family, to friends, bosses, teachers and health professionals, the prevailing attitude is that sleeping and waking late is a slovenly habit meriting zero respect or accommodation. We are often offered deeply patronising advice, such as, "have you tried lavender oil?" For those of us who have endured living with an inability to wake refreshed to meet society's morning-centric timetable, and the accompanying agony of drastically reduced sleep, being patronised by morning chronotypes assuming that, just because they and many others can sleep before midnight, then we can too, but we obviously haven't really tried: well, this is non-empathy to an extreme degree. Of course we have tried. How many hours have we been gifted to lie wide awake in the dark racking our brains for solutions? How many exhausted daytimes have we spent seeking pointers to reduce our sleep delay?!

And then there is the discrimination: from school & work having early morning starts, to hospitals demanding 7:30AM arrivals; to hotels charging guests extra for late checkout, the world is geared for those we night owls call "daywalkers".

Curing DSPS?
There is no known cure for circadian rhythm sleep disorders like DSPS.

While co-occurring insomnia may be eased by the following techniques, DSPS itself is not remedied:
  • Improving sleep hygiene does not cure DSPS
  • Cutting out caffeine does not cure DSPS
  • Sleeping pills do not cure DSPS
  • Reducing anxiety does not cure DSPS
  • Getting up early every day merely increases sleep-deprivation (which, as we have seen, can cause life-threatening health repercussions).
Some (but by no means all) DSPSers report varying degrees of success using the following treatments:
I personally take 0.5mg about 3 hours before my last natural sleep time, and – while the effect took a month to kick in – it causes me to sleep and wake on average two hours earlier.

Scientific studies have shown that, while melatonin doses of 1mg+ work as a temporary sedative, the circadian rhythm is more likely to shift earlier if microdose quantities of melatonin (0.5mg or less) are taken several hours before sleep time.

After having had my lifelong DSPS diagnosed by the UK NHS a few years ago, I requested a prescription of 0.5mg melatonin, only to be told the NHS will not prescribe doses below 3mg (which seems insane!) I tried using liquid melatonin, but found this ineffective (this seemed to be because the process of stabilising it in liquid form alters it in some way). I have since resorted to importing 1mg tablets and cutting them in half with a pill cutter.



Concerns about giving melatonin to children
While UK pediatricians commonly prescribe melatonin in doses of 3mg+ to children (one parent told me their child had been prescribed a 10mg dose!), I am concerned about this practice, not just because it disregards the solid scientific evidence for "less is more" with melatonin, but because of additional evidence that:
The importance of empathy and respect
As we have seen, while DSPS is not curable, treatments may not work, and our health becomes tattered through chronic sleep deprivation, we are subjected to massive prejudice and society-level discrimination.

A little empathy, however, goes a long way. It is perhaps beyond our immediate power to alter society's timetables to cater for night owl schedules, but we can choose to treat DSPSers with respect and make accommodations where possible.

I have had a lot of success in negotiating with hospitals to schedule later admission times for me, and my daughter's school accommodates my DSPS by setting afternoon parent/teacher meetings; however, I have found that people are more likely to respect my need to avoid morning appointments if I cite my chronic fatigue syndrome as the reason. Describing DSPS tends to result in rolled eyes and an attitude of "that's not a valid excuse."

I am lucky enough to be able to sleep to my natural, delayed schedule. My partner realised the reality of my DSPS after reading this Q&A published by the Circadian Sleep Disorders Network, and kindly volunteered to get our daughter up every morning so that I can get enough sleep. I have struggled with a lot of guilt and shame over not being there for her in the mornings, but there is no other way for me to maintain my health. Since having been enabled in this way to sleep for enough hours, the urticaria I developed when sleep deprived vanished, and my chronic fatigue is much more manageable (but still there).

I conclusion, I would like to say, please respect the reality of DSPS. It is not a choice and it cannot be removed through any amount of discipline and determination: just as autism and PDA do not go away for the convenience of others. If a child has a severe struggle with school because of their delayed sleep phase, then please do not persist in believing that it's their sleep that must change to accommodate the world: perhaps their world must change to accommodate their sleep, and, for example, your child and their school must part ways?

You can read more about DSPS here.





Monday, December 17, 2018

How I understand PDA (In language kids can understand)

Some people, both children and adults, have brains that say “no” to everything.
It’s a bit like a switch that flicks down as soon as we think of doing anything, even things we wanted, like eating cake. It makes the idea of doing these things feel very bad so we want to avoid them. This is known as pathological demand avoidance.

About pathological demand avoidance
Although pathological can mean a having a bad habit (like pathological liars), when doctors talk about pathological, they mean something is caused by an illness or by the body itself. The doctor who named pathological demand avoidance wanted to show that it is caused by the way brain is built - a bit like how wanting to run away from foxes is built into rabbits.

Pathological demand avoidance happens without us thinking about it, so we often don’t notice it, and the bad feelings it gives us (like eating cake being horrible) can seem real.

We often only notice it when something is pushed on us by someone else, like brushing our teeth or going to school. We can’t just forget about it, because someone keeps telling us that we have to do it. This can create a big problem because our pathological demand avoidance will keep telling us “no, don’t do it, it’s bad!” This is one reason it’s called demand avoidance (instead of thing avoidance): it only really shows up when people demand things from us, even though it is there all the time, and can makes us not want to do things we had really wanted to do (like eating cake, going to play outside or reading a story we’d been excited about).

Another reason it’s called demand avoidance is because even things that weren’t demanded of us (like thinking of putting on a coat) can feel like nasty demands as well.



Features of PDA
Pathological demand avoidance is called PDA for short. It’s a bit it’s confusing because PDA means the action of the switch telling us not to do stuff, and also is the name for the type of brain we have.

The PDA brain is one of many different brain types. PDA brains aren’t all exactly the same, but they always have a few things in common with each other:

  •     Pathological demand avoidance
  •     Anxiety (worrying about stuff/feeling scared)
  •     Wanting to know what’s going on
  •     Wanting to be in control of what’s going on (for example, choosing the rules of a game)
  •     Getting overloaded easily (feeling tired out)
  •     Needing quiet time
  •     Having very strong feelings we can’t control    

People with PDA brains also often:

  •     Like to daydream or imagine things
  •     Like to pretend to be different people or animals
  •     Like playing with words (for example, making up new names, and making rhymes)
  •     Wanting things to be fair
  •     Judging people on how good they really are (instead of how we’re expected to see them)
  •     Having very strong ideas/wants that we can’t let go of

We often like other children and adults, but may:

  •     Find it difficult to understand what they want
  •     Find we made mistakes without realising it
  •     Want to get along well with them, but don’t know how
  •     Not know what to say
  •     Want to seem the same as them
  •     Want to hide how we are different from them
  •     Feel very strongly attracted to someone so we can’t stop thinking about them

PDA and the autism spectrum
PDA brains fit into something called the autism spectrum. The autism spectrum is the name for brain types that have difficulties understanding other people and find it hard to change ideas. PDA brains are different to other brains in the autism spectrum because of special features like our pathological demand avoidance and needing to be in control.



Meltdowns
Not all PDA brains are the same. Some of us can’t help shouting, screaming or hitting people when things feel too much; some of us might feel they have to run away; and others just cry a lot, or find ourselves arguing or demanding things we don’t really want. Whether we hit people, run away or cry, when we find ourselves stuck doing things we can’t control, it is called a meltdown. 

Other people are often confused and upset when we have a meltdown because we seem angry or difficult for no reason. They probably don’t understand that we can’t help what we are saying and doing.

Meltdowns happen when our PDA brains are overloaded and can’t cope any more. It’s a bit like shaking up a bottle of fizzy drink and unscrewing the lid. Having lots of quiet space helps us to avoid meltdowns (just like fizzy drinks don’t explode if you don’t shake them up before opening the bottle).

Having lots of demands put on us (things like “go to school”, “sit still”, “wash your face”) tire us out (put us into overload) because we have to fight with so much pathological demand avoidance.

People who don’t understand PDA can be surprised when we have meltdowns after they tell us what to do a lot.



Quiet time need
They may also not understand how much quiet time we need and call us lazy, but PDA brains need lots more quiet time than other types of brains. We may think we are lazy as well, because other children and adults don’t need as much quiet time as us, and our pathological demand avoidance stops us from doing things that other people do.



Burnout
As well as causing meltdowns (where our emotions take control), not having enough quiet time can cause burnout (where our brains run out of energy). It can take a very long time to get our energy back from burnout, and we need even more quiet time than normal to recover from it.



Creativity
PDA brains are often very creative. We are often good at coming up with new ideas.

We are also often good with words and may enjoy playing with them, for example, inventing new names for people and pets and making up rhymes.




Daydreaming and roleplay
PDA brains are often very good at imagining and making up stories. Some of us invent very complicated fantasy stories which we may daydream to ourselves, or act out in real life. When we act things out in real life it’s called roleplaying.

PDA daydreaming can help us through difficult times that we can’t get out of. Daydreaming can comfort us if we don’t want to, or can’t play with other children during school breaks; if we are stuck in a classroom; or if we can’t get to sleep at night. We may find ourselves daydreaming more often if we are very sad or worried. Our daydream stories are often about us being in control. Being in control is important for PDA brains, and daydreaming about it can help us feel better when we don’t have much control in real life.



Control need
The PDA need for control is very, very strong. It’s not about having power over other people, but about having control over our own worlds. Demands can be thought of as all the things we are not in control of (having no choice about going to school; brushing our hair, tidying our rooms, etc), so having control means we are avoiding demands (PDA brains always want to avoid demands). This is why it helps us to be given choices: choosing allows us to be in control of our worlds. Feeling like we might lose control (so not be able to avoid demands) can make us feel very anxious.



Anxiety
Although high anxiety (worry and fear) is a feature of PDA, many of us don’t even notice feeling it, because it has always been there so it is normal for us.



Intolerance of uncertainty
PDA brains can feel very anxious if they don’t know what’s happening. We can feel upset if we don’t know what will happen in the day. Sometimes we might panic if we hear people talking on the phone, but don’t know what the other person has said. We might also worry a lot if we don’t know what’s happening in a TV program and ask our parents or a friend to tell us what the story is. We might not want people to realise we don’t know though, because we want other people to think we know as much as they do.



Problems with other children and adults
Our PDA control need may make it hard for us to keep friends because they don’t like us telling them what to do. For others, we may feel very shy and find it difficult to even talk to other children.

We often find being with other people (children and adults) very tiring, and need quiet time to get our energy back. If we can’t have quiet time, we may get overloaded and find people annoying.

We may find it difficult to tell what other children and adults are thinking and feeling. This can be because our PDA brains aren’t able to read all the face, body and voice signals that other types of brains can see. Sometimes we may feel confused if other children treat us like we are stupid because we didn’t read all their signals, but we can understand people very well in other ways.



Obsessions about people
Although we may have these difficulties getting along with other children and adults, we do tend to be interested in people. Our interest in a particular person may become so strong so that we find it hard to stop thinking about them.



Masking
Many of us (both children and adults) want to seem the same as everyone else and hide what we feel is different about ourselves. We may try to not to show it if we feel upset, scared or angry. This is called masking. One type of masking is copying how other children or grown ups act and speak, this is called social mimicking.



Being fussy with food
We can have lots of problems with food. First of all, our pathological demand avoidance can cause us to not want to eat things if they feel like a demand. This could be because we weren’t asked what we wanted to eat; or because we are expected to eat it all up. Our pathological demand avoidance can then make these foods feel nasty to us so we want to avoid them.

Many PDA brains are also very sensitive to tastes, textures and smells. This means foods that might taste, smell and feel fine to other people, might not be nice for us.



Liking to help people
Although our pathological demand avoidance causes us to say “no!” if people ask us to do things, we often do like to be helpful. We just need to do it because we have chosen to. We probably won’t want to help though if people expect us to (because this may feel like a demand).





What doesn’t help us
Treating us as if we have a different type of brain doesn’t help us. Our PDA brains respond differently to things, such as demands, than other types of brains. Our pathological demand avoidance isn’t a habit that we can learn to let go of.

Punishing us for avoiding things or having meltdowns doesn’t help either.

Telling us that other children cope with things that we can’t cope with often just makes us feel bad, but we can’t change what type of brain we have.

Telling us we just have to do things will make our pathological demand avoidance worse.



What does help us
Feeling we have a choice can switch off our demand avoidance “don’t do it!” feeling, so it is much easier for us to do things if people give us a choice, instead of telling us we have to. We can even tell ourselves we have a choice (for example, “I don’t have to do that”), we may find our demand avoidance against it goes away.

Having enough quiet time helps us too. PDA brains overload easily (this might be because it is very tiring having to fight demand avoidance all the time). We are better able to fight demand avoidance if we have had enough rest.

Understanding how our PDA works helps us to feel OK about ourselves too.