Coming out of a Sunday afternoon crash, I suddenly for the first time wondered if there were any links between autism and fatigue. I think that I mostly had just assumed that if my diagnosis had any bearing at all on my routine fatigue it would be as an aspect of my anxiety. But then, I finally asked myself, why does it hit even on days when my anxiety levels are not particularly high?
Enter a post by Undercover Autie, which almost made me cry out of recognition as I lay in bed waking up from my fatigue-compelled sleep.
I wake up and feel unrested. Getting my brain out of ‘sleep’ mode and into any kind of action feels like dredging the bottom of a lake. It’s heavy and slow and muddy. My eyes cross and blur because they’re so tired. I can’t concentrate very well. I try to write but it’s too much for my brain to focus and create anything of any quality. I rest my head back for a moment and notice how my body longs to lie down. But I don’t want to sleep through the day because, according to everyone and their dog, a good routine is the key to good sleep. So I try to distract myself with things that aren’t so taxing on my brain. I watch TV.
That’s recognizable enough but later on she could have been describing specific days I’ve actually had, like an eyewitness account.
I decide to pick up some groceries that my brain can make sense of so I walk 20 minutes to the shop, buy a few items, and then… Oh. I’ve overdone it. I thought a trip to the shops would be gentle enough but apparently not. I literally shuffle home, wondering with each step whether I could just have a quick lie down on the pavement and rest. My body feels like it can barely move and my lack of physical strength to continue means that my mental strength has to kick in in order to force it. I will myself to get home. Finally, I push open the front door, drop my back of shopping, and fall onto the sofa, coat and boots still on, and fall asleep.
So I’ve been doing some reading about any potential links between autism and fatigue; it doesn’t seem like a subject that’s gotten much attention. As I read personal stories like that on Undercover Autie, it strikes me that fatigue of this kind of course would necessarily and inevitably follow from the sorts of mental work autistic people need to do just to navigate, and maybe that’s why it doesn’t seem to be discussed as much as other aspects of autism.
But I’m now grossly curious.
When my fatigue hits, it isn’t like feeling tired. It isn’t like realizing you’ve been up a bit too long and really should go to bed. It’s not the almost-satisfying sort of tired you get after a full day of a job or hobby well-done. Instead it’s like someone slipped you a really fantastic decongestant without you noticing and you’ve had no time to prepare. “My body feels like it can barely move and my lack of physical strength to continue means that my mental strength has to kick in in order to force it,” she writes. That’s exactly it. That’s exactly right.
The amount of sleep I get at night appears to be irrelevant, as does the degree to which that sleep was or was not restful. The fatigue seems entirely divorced from the normal, patterned need for a good night’s sleep.
If there indeed is a connection between autism and fatigue, is this just something I have to accept, and therefore (among many concerns) something that’s going to affect my next job search? Is my fatigue something that can be managed or mitigated in some fashion other than just letting my body shut down on me in the mid-afternoon, no matter what else the world thinks is required of me that day?
If there isn’t a connection between autism and fatigue, then where, exactly, is all of it coming from? Will a doctor be able to tell me? (That’s a next step.)
I wish I could remember if I always was this way. I have a difficult time with memory. (I once said, “If events were pictures and emotions were sounds, my memories would play as silent movies.” If my brain doesn’t lay down that emotional track, I wonder if that impacts how well I hold onto events at all.) I’ve no idea if I felt fatigue during college, let alone during childhood. Then again, later in life (and in no small part because of what we know now were the imapct of my then-undiagnosed autism), I’ve had many years where, quite frankly, I could sleep in because I was not working.
It’s true what I said, that the amount and quality of sleep I get at night doesn’t seem to impact my fatigue, but maybe that formula doesn’t hold when you can sleep every day until noon.
Not all activities that are mentally- and psychologically-strenuous to me are created equal. I don’t tend to hit a mid-afternoon fatigue on Saturdays when I host our three-hour visiting time at The Belmont Goats, even if those hours are stressful with lots of visitor activity. Then again, awhile back I stopped covering Sunday hours, giving me an entire day for any needed recovery. Perhaps just knowing, on Saturday, that my next day will be free of any encumbrances is enough to make Saturdays different.
I’ll find out more in the coming month, I think.
I’ve taken a three-day shift at our county elections office, something I’ve done twice a year for maybe six years now. It’s something of an experiment. The six-month job placement I just left due to the sheer mental heath weight it imposed upon me has made me skittish about returning to any sort of normal work environment, but I feel like it’s worth finding out if an environment I’m used to, and have easily managed in the past, remains that comfortable and navigable.
Yesterday, I emailed my primary care physician asking if they knew anythign about potential connections between autism and fatigue, beyond the anecdotes I’ve been reading online, or living every day in my own life.
There are a lot of things I need to figure out over the next couple of months (if not exactly fatiguing, wearying in and of itself.) I’m beginning to think that my mental (and physical) health goal for May should be finding an answer to my fatigue, whether it’s an aspect of my autism or not. If not, it certainly cannot be helping.
In the meantime, just let me be quiet and rest.