My Hair Hurts — Autistic Shutdown
By Eric E. Cane
No fever. No sinus pressure, coughing or indicators of illness other than an increasing malaise that turns into full whole-body mental and physical depression where even easy things require tremendous effort.
Doctor’s visits always came with similar words “Well, you don’t test for anything. You probably just have a bug.”
This happened throughout my life. Similar responses like that. During some visits, they would give me antibiotics “just in case.”
I thought I had cancer. My autistic mind kept focusing on the fact that something was happening to me that none of the doctors could find. Clearly, it was cancer. Or MS (multiple sclerosis). Or any one of several (I had narrowed it down to several, at least) major — but often misdiagnosed — illnesses that only meant my eventual shutdown and death. Family history (several hundred of my kin to go through) only broadened the scope of the higher potential list, even though cancer wasn’t prevalent.
As usual, I did well perseverating. This only increased my depression. But until I heard (later in life) and then exhausted myself looking up everything I could on autism and autistic shutdowns, I thought I was slowly dying. This doesn’t help one plan for a future — which I have such difficulty doing, anyway. In the back of my mind, I always had that certain finality looming.
I want to say that fatigue is a part of this, but that’s not quite the best description of it for me. It’s like standing in one spot, but all the parts of me you can’t see are being squeezed and pulled in opposite directions by giant, unrelenting hands.
On the outside, I may appear fine, though I get decidedly slower, and my energy levels drop as I struggle to retain the shape everyone else is seeing. The desire to just collapse and sink into oblivion is immense. At times, it gets to where I don’t even have the energy to speak. How could I explain this to others who only know that ”sick looks like this” and ”not being sick looks like that“? The strain of retaining my interactions and appearance battles against the need to retreat from the entire world. It is a battle I lose.
This awareness and struggle is part of my early warning stage that a shutdown is imminent. Another is my hair hurting. This is where the slightest touch to my hair on the whole top of my head causes discomfort or outright pain. It took decades to finally narrow this hair thing down as relating to shutdowns.
As with a lot of pain I experience, I don’t really notice it as such. Some say I have a high pain tolerance, and this is true. But I think this also has to do with how some neurodivergent individuals perceive and define (or our inability to define) pain signals. We have a hard time defining it as pain. This is the main reason many of us struggle terribly with the doctor’s question of “what is your level of pain today?”
My hair hurting is a key indicator that I am on my way to or in a shutdown. I don’t have this sort of pain with any other illness I’ve so far experienced. And because I don’t always pay attention to pain, I often miss the cues before it’s too late. I don’t know the mechanism behind this, perhaps other than my brain trying to leave my body and being restricted by my skull.
Darn skull.
Took nearly three-hour nap today and, for me, it doesn’t seem to help — but such a thing is also a persistent influence, and I have to collapse in response to its demands. I don’t sleep well in general, that also is life-long and a part of many of our autistic kin’s experience. So, when all my thoughts turn to closing off to the world and collapsing in a heap indistinguishable from the pile of blankets and pillows, I know something is definitely not right. Fatigue I recognize. Even exhaustion. But this is shutdown. It’s worse, as it has to run its course. Rest doesn’t help. Isolation does, but even then it takes so long to clear out of me. Far longer than I’d like.
The other part of the experience is a brain challenged to think of much other than the sometimes *overwhelming* need to get away. Close off. Shut down. Heal. The persistent need to get away is subtext to all of my interactions with people. All of my daily activities.
I don’t know that I can convey the level of dislike I have for when this happens. I can only compare it to one of Spock’s struggles (Star Trek original series, Amok Time). This is when his intellect is consumed and redirected during pon farr. His immense embarrassment, distaste, and even shame for having his mental faculties hijacked for a biology that has different needs, are well-expressed through the actor Leonard Nimoy. A shutdown for me doesn’t have the explosions of anger, but definitely a fire-hot poker demand to hide away, to keep what I am going through from people.
The most I tell people is that I am coming down with a bug or that I am starting to feel sick. This is a social grease that allows me to exclude myself from their activities, as few want to be in the presence of someone sick.
When it gets to the point it is now, my appearance and interactions are easy tells (at least to those close to me) that something is off with me, that I am not feeling my best at all. It is definitely telling to myself when I have dreams of stepping out of a business building and my body is just crying — I mean sobbing — as soon as I step out of the glass door, and I don’t know why. In the dream, I tell myself “it’s okay, you’re okay,” but then I am aware of people around me and know that I have to dry my tears and move along.
Yes, I do feel it’s a weakness and I hate that it happens — and yes, I know that the reasons for feeling like that are not proper. They are indeed ableist. It took decades to form an image of myself based on characters of strength, functionality, and potential — only now to realize that self-image was based on neurotypical examples of those things.
Growing up, we rarely ever saw the “weaknesses” of those around us. This is such a travesty to truth and the understanding of human individual experience and expression. We rarely got to see the whole picture of humanity because of social conventions upheld that create an image of reality that isn’t quite real, but accepted as such all the same. The strain we all go through trying to uphold this is tremendous and, yes, I feel it is damaging.
It’s worse for myself and my neurodivergent kin because we hid away and never revealed to others something even we didn’t even understand about ourselves, but may have been shamed for it. That same type of shame ripples forward from humanity’s lack of understanding of itself and need to color everyone’s perceptions of each other with the same brushstroke and paint. And when that paint peels and cracks, we actually get a glimpse of what lies beneath.
This is part of why I work hard, in my own way, to share what is happening to me, so that others know it’s okay. You’re going to be okay as the person you actually are. I am learning to accept this myself, and hope what I write helps others to accept themselves.
The causes for my shutdown are too revealing and personal to go into, but I can say that it stemmed from a constant stimulation that I couldn’t escape. Greater combined and continuous levels of sounds, bodies in motion, textures, scents, too bright lights — all contributed to it. That, and excessive workloads (many self-inflicted) that added to my intense worry, lack of physical rest, and a lack of just being the f- alone and off-planet floating in space for a few days.
That would have helped.
Just shutting everything off. Everything. All sound, all stimuli. Just nothing for several hours at a time or even for a few days might have helped head it off completely. I didn’t get that time, didn’t realize my triggers early enough, and that got me to where I am now.
I think it’s a condition where our external turmoil rises to the level of our internal turmoil and something has to give. And since we have nothing left to give, we shut down.
It takes longer for me to write when like this. I was able to do it in a couple of days, though. Even this worries me. My self-imposed deadlines and lack of forgiveness when I don’t meet them is an ongoing tension. But I do have to forgive myself and accept that my body has other demands for me at the moment.
I hope you found something valuable in my writing. If you do, please clap and share to others who you think may find it worthy. Thank you.
