Towards A Personal Autism Glossary
AFTER TWO WEEKS of not being entirely clear why I was seeing a psychoconsultant again beyond the idea that it’s what I’m “supposed” to be doing, today we did something of a pivot after my thoughts about being nitroglycerin and my attempt to define and distinguish reactions from responses.
For two weeks in a row now, I have left my psychoconsults feeling like it was being argued that how things affect me is my fault. While I don’t actually believe this is what my psychoconsultant was arguing, for whatever communications breakdown reason it’s how things have been coming across.
So we are going to have to come to terms, literally, in that we need to be using the same language to describe things. For me, it’s a matter of stimuli, reaction, and response.
One problem with today’s conversation is that monotropism and its restrictions on multitasking mean that even under normal and comparatively relaxed conditions, I cannot simultaneously listen to the person talking to me, think about what they are saying, have my own thoughts on the matter, and hold onto those thoughts for when it’s my turn to speak. That makes it difficult to guarantee that I and the other person actually are talking about the same things. (Toss in my tendency to be deferential to the other person if it’s a close-quarters, high-pressure, me-on-display, one-on-one conversation, and miscommunication practically is a sure thing.)
I’m thoroughly a layman, so it’s unclear to me how on the one hand the researchers state that no real links were found “between measures of cognitive function and sustained connectivity” and yet also suggest that their results might be consistent with “another hypothesized physiological mechanism in autism, that of decreased ability for shifting of attention” in autistics, since I would think that one aspect of cognitive functioning in fact is the ability to shift from the attentional tunnels discussed under monotropism, but mostly I am just sort of astonished that one the same day I learned about monotropism I also ran across an fMRI study that seems to support it, at least in part.
So, I am not entirely sure, even with what progress was made today, that terms necessarily were getting defined in a common way.
Last week here, I tried to nail down the difference between what I consider to be the innate reactions of my autistic brain to stimuli and the responses I might have to those reactions, and as well to nail down the idea that sometimes there is a “beat” between the two that might be taken advantage of to steer some responses (although, necessarily, this means there also sometimes either isn’t such a beat, or it’s impossible to notice it, because of the sheer numbers of stressors happening at once).
This week it’s got to be about defining some terms. A sort of autistic glossary, because I think some things have been getting confused and conflated. I should note that I don’t think there’s even any particular consensus among actual autistic people about what words mean what. All I can do here is use the terms that most suit and reflect my own experiences, and how they feel from the inside.
The terms “overwhelm” and “shutdown”, for me, are related to each other and related to Spoon Theory. When I’ve run out of spoons (and it’s important to point out that on any given day you don’t really have a known spoons count to keep track of) and am running on fumes, that puts me into a state of overwhelm, the most common response to which is an at least partial shutdown. It could last for moments, as I just have to stop walking, for example, and stay perfectly still for awhile, going mostly mentally blank, or it could be uncontrollably passing out on the bus.
The spoon theory is a disability metaphor (for a combination of ego depletion, fatigue, and other factors) and neologism used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness. Spoons are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.
There’s no real advance notice, per se, or ability to control an overwhelm. It’s going to happen when the spoons run out. (Although, I’m going to come back to this.) In a sense, running out of spoons is the stimulus, overwhelm is my brain’s innate reaction, and shutdown is my autonomic response.
“Breakdown” (or, sometimes, “meltdown”), however, are more circumstantial. Situational. These for me are linked to stimuli, and are environmentally caused. The crying fits I started having at my Vocational Rehabilitation job placement last year, and still have today, are examples of breakdowns. The shouting matches I get into when I catch someone feeding the goats and I respond not just to that individual person or instance but to every single time it’s ever happened are examples of meltdowns. They’re a bit different, but related in that they are the result of specific, although not always identifiable, stressors in the environment. Concrete triggers that conflict directly with the way my autistic brain is wired.
So there are energy-based states of overwhelm in which I will tend to shut down, and environment-based states of stress in which I will tend to break, or melt, down. There’s not much you can do about the former, but the open question for me, I guess, is to what degree there are things to do about the latter.
That’s with the proviso that if environmental stressors are sufficient in number and intensity, environment-based states quickly can become energy-based states, and I’ll go straight to an overwhelm.
“Burnout” is something else. It’s almost a life stage, in that most of my awareness of burnout relates to autistic adults, and in my case late-diagnosed autistic adults. Burnout is a kind of overwhelm but linked to long periods of camouflaging (masking), such as the lifetime of it that late-diagnosed autistics likely were engaged in for decades without knowing.
I’ve described burnout before as the result of the buildup of a sort of psychic plaque over a long period of time, caused by long-term camouflaging. Like arterial plaque can cause heart attack or stroke, this sort of psychic plaque can cause burnout.
So, burnout is not what happens when you run out of spoons for the day, or the week. It’s more disruptive than that because it isn’t about a discrete time but about one’s entire life (or a significantly long or intense period of it)—and so, in a sense, about one’s entire self. It’s existential.
With all of these different states in mind, it’s important to talk about “stimming”. Stimming is not a bad thing. Unless your stimming happens to be causing you or other people actual harm, stimming isn’t a thing that requires control.
Stimming primarily is a self-regulatory mechanism for calming, a coping and a survival mechanism in stressor-filled moments and environments. (This does raise the question: is stimming a potential means of avoiding, delaying, or mitigating an oncoming breakdown?) Arguably, if the outside world is going to have an opinion about the appropriateness of stimming at all, that opinion maybe should be that autistic people should do more of it, not less of it.
It also can sometimes (remember I said I was going to come back to this) keep you going through an overwhelm when your spoons have run out.
It’s a way, in those moments, to keep your body driving forward through the day, e.g. when I’m on fumes but am all the way across town and still need to get home. My rocking and swaying and hand fidgets don’t require any expenditure of mental or emotional energy but are a way to keep my body engaged in the outside world that I can’t escape until I actually get home. You aren’t, strictly speaking, controlling the overwhelm so much as putting it into a kind of suspended animation.
None of which necessarily give me any clarity on why I am seeing a psychoconsultant again, other than to say that living a life with overwhelm, shutdowns, breakdowns, meltdowns, and burnout is exhausting and too often hurts too much, and I need there to be a way for that part of it to stop.
What parts of this, strictly speaking, simply are the autistic wiring of my brain, period, and what parts might be elements of anxiety, OCD, or, perhaps, even depression over which there might be even some small element of control?