Chronic fatigue, the feeling of exhaustion which remains np matter how much rest a person gets. Many adult PDAers seem to suffer from some form of chronic fatigue, though whether this is a direct result if living with demand avoidance or a result of another comorbid (comorbids are a common occurrence in those on the spectrum), it is difficult to tell.
Indeed, further research in this area would be of great benefit, not just in understanding the difficulties that can arise from being PDA but in also better supporting adults and children to reduce existing difficulties and minimising future difficulties too.
But does PDA create chronic fatigue in adults? Does living in a society which causes constant stress and triggers for PDAers cause us to develop chronic fatigue? Or is there another reason so many of us suffer cfs (chronic fatigue syndrome)?
I myself have PoTS (postural tachycardia syndrome), this often causes cfs. Add in some kind of, undiagnosed, sleep disorder. Who knows whether my chronic fatigue is because of PoTS, the sleep disorder, PDA or a combination of these.
It is a mystery, but one worth looking into.
So how would, if it does, PDA cause csf?
There have been studies that show extreme stress can cause an array of mental and physical health issues, anything from PTSD to fibromyalgia, including cfs. The extreme stress can be anything from a difficult house move to living in an abusive relationship, from mistreatment of a disability to being in the army, from bullying to being poor. Studies showed that the longer a person is living in extreme stress for, the worse it will impact on the individual.
The question we need to ask is ‘is living with PDA an example of living with extreme stress?’ My answer would be ‘yes, undoubtedly’.
PDA is where our brains think everything we try to do, or try to stop ourselves doing, is a danger, this triggers the fight/flight/freeze mode to protect us from the perceived threat.
Everything and anything can be perceived as a demand. All those little things that people do everyday that they might not even realise they are doing, they are all potential demands.
Having to get out of bed, having to use the toilet, having to clean ourselves, having to flush the toilet, having to wash our hands, having to dry our hands, having to close the toilet door as we leave, having to walk downstairs, having to get a bowl out for breakfast, having to choose which cereal to have, having to pour the cereal, having to put the cereal away, having to add milk, having to get a spoon, having to eat the cereal, having to put the bowl in the sink, ect, ect.
Exhausted yet? Every single little thing we do triggers our brain to see danger. Every little thing puts us on edge, sends adrenaline flooding through us, getting us ready to fight or run or freeze. All day, every day.
And studies have shown having adrenaline and cortisol pumping through us that much will have a detrimental affect on our health.
Cortisol is released in response to stress, it helps start the fight/flight/freeze responses to danger.
Adrenaline helps prepare the body for fight/flight/freeze by giving you more energy during times of stress.
With potential demands literally everywhere, PDAers are constantly triggered into a stress state which releases cortisol and adrenaline.
Add in parents who may not know about PDA, they may only see wilful defiance, chosen refusal, so they may push, they may force, they may cause us to feel even more on edge, more anxious, more trapped and scared.
Even if the parents know and understand PDA, there may still be a bit of pushing, because parents are human and it is ever so hard to undo traditional parenting thinking methods.
Add in siblings who may fight against the PDAers attempts to exert control over their environment. Siblings who may be PDA too so their triggers bounce off one another. Siblings who may place demands on the PDAer because they just want to play with them, not realising it’s causing stress.
Add in teachers and classmates, add in extended family members, add in doctors and dentists, librarians and bus drivers, add in social expectations that are literally everywhere ‘say “please” and “thank you”, be good and follow gender norms, listen to adults, keep off the grass!’
If the PDAer in question is an adult then add in adult expectations ‘pay the bills, clean the house, follow road signs and say “hi” to your neighbour’.
Add in work and social events, add in laws and rules, add in birthdays and holidays, changing of the clocks and seasons, add in politics and news, add in Facebook and YouTube.
Stress and stress and stress, anxiety and anxiety and anxiety, adrenaline and cortisol and adrenaline and cortisol. Is it any wonder PDAers try to hide away at home where it’s safer (not safe, never fully safe, but safer than outside).
PDAers spend years and years having stress placed upon them day after day after day. How long can a person go having cortisol flooding through them every hour of every day before it starts to negatively impact them? Can our bodies still have a decent amount of energy after years of dealing with high levels of stress? Or does this extreme stress cause our bodies to start to fail, to experience chronic fatigue? Are we so worn down by the constant stress of being in fight/flight/freeze that we simply have no energy left to cope anymore?
As people age the body slows down, organs stop working as well as they used to. It would make sense that if a person was constantly releasing cortisol and adrenaline that getting older the body would struggle to cope with the same levels of stress as it used to. We might find ourselves in states of high stress without as much adrenaline needed to get through it, leaving us exhausted and weakened. This could cause cfs.
Of course research is needed to prove or disprove this, and I’m not biologist so can only guess, but it does appear that many adult PDAers are suffering with chronic fatigue, and PDA could very well be the reason for it. If we are able to ascertain whether this is true, it might help the next generation of children to suffer with this less by putting in place strategies to reduce triggers and times of stress so the body isn’t as badly worn out by the time they become adults.
Riko's blog: PDA and more. 
Thanks for sharing this. So much to think on re possible causes of fatigue in PDA. I for one hate the word fatgieu in this sense, as it isn’t enough of a descriptor for what I endure. I prefer exhaustion, as it is more of a physical thing than just feeling tired.
I’m enjoying reading your blog posts from the past. Your comments in this post make a lot of sense.
The Easter Holiday demands are getting on top of me (I self Identify with the PDA profile after thinking I was Aspie for years but don’t want a formal diagnoses as the pressure would be too much).
We been trying to have another child for years. No problems with my first 2! I’m pretty sure PDA is stopping baby #3. I wonder if any other PDA women are struggling with secondary/thirdly(!) infertility?
Sorry – I’m not of Facebook as I would find it too demanding with all the constant messages and info overload x
Sounds very similar to my Asperger’s ,sort of feel I’ve got both. What you say is PDA is like a hiker that won’t start till every possible scenario is thought out and any problems foreseen be addressed before the first step out of the parked car is taken. Where’s the cliff where’s the snakes what about cell phone battery what if I break a leg,what if I need to sleep in the woods till someone finds me, water, fire every basic need 4 backpacks stuffed,, later,,, okay ready to go ….
Oh it’s dark now might as well not start it’s safer that way.
It makes sense that there could be a link. Then again, I’ve read about ‘autistic burnout’ before, and that also makes sense (as it was described to me, that was more to do with constantly processing sensory input on a more conscious level, and perhaps also linked to executive functioning differences). A follow on question to all of this, is how do we cope once the chronic exhaustion is a fact..? xx
I’d say reduce activity to better cope with the fatigue but it’s likely that’s already low as it is so not sure how much more people would be able to reduce. I’d recommend getting blood testing done though to rule out any vitamin or mineral deficiencies which make be factoring in too as sometimes upping our vitamin levels can help somewhat.
That sounds like really great advice, thank you Riko xx
Hi. Thanks for sharing . Might help to have masssges or other complementary therapies on a regular basis to counteract the constant cortisol/ adrenaline release; also possibly highlights the importNce of physical activity and – like you say- the importance of building in long rest periods .
My life has demonstrated this perfectly! Thanks for mentioning it.