Interlude: Autobiographical Note

From 2018 to 2023, I experienced a series of episodes that I came to understand as autistic burnout, of varying degrees of intensity and persistence. Until 2022, I was self-diagnosed with autism but had not received a professional diagnosis, and neither I nor anyone else connected my symptoms of autistic burnout with autism. After a year of profound exhaustion, I began to undergo episodes of "brain fog" or semi-consciousness, which I eventually came to call dissociation, as a kind of personal shorthand. A friend of mine eventually called 911 for me (with my permission) and I was admitted to the hospital for a week, where they ruled out absent seizures, and then a wide range of mental health conditions, before sending me home without an answer. It was clear to the hospital's psychiatrists that I had PTSD, but for what reason no one could say. During the course of these five years, I strove to keep a demanding full-time job, with mixed success at best. I was often on leave and unable to work. At the same time, my workplace refused to give me almost any kind of meaningful accommodation while I was at work; the approach of HR was quite black-and-white. My situation was made more difficult since, for the majority of this time, I had no formal diagnosis other than PTSD. 

Over time, I began to link my speech delays, my difficulties with executive function and with dissociation, first to autism, and then to autistic burnout. Late in this interval (around 2022), I underwent an autism assessment and received a formal diagnosis. Over the course of the next twelve months, I attempted once more to return to work full-time, and found myself gradually sliding into a deeper period of exhaustion and autistic burnout than I had ever before experienced. I had been struggling to speak quickly for a long time; in the spring of 2023, however, I lost the ability to speak at all, and then I lost my ability to use my AAC. First, my struggles with ARFID (a restrictive eating disorder) became more pronounced; over time, I lost the ability to prepare meals, then to get out of bed, and then to feed myself. I was too exhausted and too lacking in motor skills to get out of bed. I worried that, if my condition continued to deteriorate, I would begin to have trouble breathing. At one point, I was able to call an RN hotline and was told to go to the hospital immediately, but I did not feel it was possible. Fortunately for me, my family had been checking on me regularly for a while, and when they visited me in this state, they packed me into a car and drove me the two thousand miles home. They doubted that I could handle an airport or a flight. 

While it was clear that my autism was in many ways the root of these troubles, it was not clear whether autism could fully explain what had happened to me; many or most autistic people, after all, do not experience such a spiral. In the last week, however, I began to have the glimmers of a possible answer. The first glimmer occurred when a new psychiatrist asked if it were possible that I had been so depressed that I had been catatonic. The term "catatonic" seemed like a fit, as a close family member had referred to one of my prior episodes as an "almost catatonic" state. But it didn't seem to me that depression was the cause. Not long after, I came across the term "autistic catatonia" in a very helpful discussion on reddit: one user suggests that autistic catatonia is the most likely cause of mutism among autistic people who are not nonverbal (apologies for the double negative; referring to some people as "verbal" would likely be confusing). As someone with a Level 1 diagnosis, who is not typically nonverbal, but who has had protracted periods of being nonspeaking, nonwriting, and noncommunicative, the phrase "autistic catatonia" really made me perk my ears up. I was especially intrigued because I had been referred to as quasi-catatonic or possibly catatonic by multiple people with ties to the medical field. I was very fortunate that a quick internet search for "autistic catatonia" led me to a number of useful sites and resources. Before too long, I had learned about the work of Dr. Amitta Shah, a leading scholar of autistic catatonia, whose earliest work on the subject had already been published by 2000. Since then, Dr. Shah--a distinguished clinical psychologist--has written numerous articles, in a range of venues, as well as a monograph entitled Catatonia, Shutdown and Breakdown in Autism. Dr. Shah's work has already been immensely helpful, and intriguing, to me, as so much of it seems describe my own recent condition (I'm basing this statement not only on my own subjective experiences, but also several others' observations and opinions of the matter).

Here I arrive at the point of this autobiographical note, which is otherwise outside the flow of this series of posts: I am confident at this point that, in my own case, my transition from moderate to severe "autistic burnout" was actually the onset of mild catatonia, which was steadily worsening as I was refusing to treat it seriously, and which eventually reached quite a dangerous stage--not only because it produced trauma and suicidal ideations, but because catatonia in itself carries a high risk of morbidity and mortality.

Furthermore--and here is the most important part--I have come to suspect in the last week that "autistic burnout," as a phrase and as a colloquialism within the autistic community, very often describes the onset of mild autistic catatonia, and that the overlap has not been recognized by researchers. Autistic catatonia is a much more well-established clinical term, but research on the phenomenon is nonetheless quite limited, with relatively few clinical studies on it having been published. "Autistic burnout," on the other hand, is quite well-established within the vernacular of autistic people and autistic communities, but it has only been introduced to formal academic study within the last three years. 

My belief is that, if these phenomena are indeed sometimes the same thing, there is much to be gained by linking them formally and recognizing them as equivalent terms. Here are a few of the benefits, in no particular order other than that in which they occur to me:  

First of all, recognizing "autistic burnout" as the onset of mild catatonia can help allistic people to understand that, while "autistic burnout" shares the same name as work-related burnout, it is in fact an entirely distinct and much more severe condition, one with potentially major medical implications. This awareness could help medical professionals respond quickly and appropriately to the onset of autistic catatonia--as quick response times are critical for the successful treatment of autistic catatonia--and it could also help autistic people get some of the accommodations they need from workplaces who may otherwise treat their conditions as passing or trivial, akin to a more severe form of normal fatigue. "Autistic burnout" is often referred to as "exhaustion," but in fact, in the experiences of many autistic people, the symptoms of "burnout" often run well beyond those of even normal exhaustion. A well-established link with mild catatonia would help to make this dimension of autistic experience clear; it would also shed greater light on the support needs of individual autistic people, who may in fact be experiencing the onset of mild catatonia much more frequently than is currently realized. 

Second, drawing a link between "autistic burnout" and "autistic catatonia" would greatly promote understanding of both phenomena, as it would involve both areas of research to be drawn together, and it would enable researchers working within both of these small areas to maximize the resources and prior research on which they could draw. Scholars of autistic catatonia might find they had a wealth of already-conducted interviews and self-descriptions on which to draw; scholars of autistic burnout might find that they had a wealth of relevant scholarship to draw on, even while they documented a new phenomenon and a new language for discussing it. 

Third, studying the link between autistic burnout and catatonia would help autistic people draw distinctions among the wide range of experiences and conditions sometimes described as burnout, especially among online communities, and to distinguish between normal or even extreme workplace fatigue and the experience of catatonic burnout. If this link were better understood, it might also enable many self-diagnosed and self-diagnosing people to understand exactly what is meant by "autistic burnout," as they seek to assess their own experiences of fatigue as it might be relevant to a potential autism diagnosis. 

(As I write, I find myself wanting to distinguish between "normal burnout" and "catatonic burnout," and this distinction strikes me as so potentially useful that I will keep it. It might even be useful for us to describe a kind of spectrum of burnout, however casually: we might refer to "normal burnout," or the burnout that everyone experiences from time to time; "severe burnout," which is basically exhaustion; and a "catatonic burnout," which is really mild to moderate moderate autistic catatonia, and which many autistic people experience, and describe as "burnout" to one another, but have an almost impossible time explaining to the outside world.)

A fourth important benefit is that, by recognizing "burnout" as the onset of catatonia, we could better understand why so many autistic people experience burnout with dread or terror, and we could better understand how and why autistic people in burnout may be at risk of suicide, even though burnout is not at all the same thing as depression. Catatonia is a medically dangerous condition, one which can and should lead to hospitalization if it becomes severe enough, and which is often associated with morbidity and mortality. In my own case, I found myself experiencing increasingly severe and dangerous catatonia without any language to describe what was happening to me, or even any understanding of what I could say to an EMT if I called an ambulance: "I'm autistic? I'm too tired to get out of bed?" This fear, confusion, and ignorance about my own experience kept me from calling 911 as soon as I should have. It also led to the resurgence of my PTSD symptoms and the onset of new ones, as one primary cause of PTSD is the fear of major harm or death. Without the possible label of catatonia, I knew that I was afraid I would eventually stop breathing, but had no idea why I might be afraid of such a thing, and dismissed it out of hand. Reading about autistic catatonia, however, has shown me that untreated catatonia can, in fact, lead to the cessation of breathing. This knowledge helps me to understand my fear, and to commit to managing any such risk in future, which in turn enables my PTSD symptoms to retreat, as I can understand this dangerous and isolated state of growing catatonia as a thing of the past.

In what follows I will begin the work of drawing a comparison between "autistic burnout" and "autistic catatonia," to show their quite suggestive similarities. My point here is not to make a conclusive case--I am not a medical researcher, or a public health researcher, and in any case I only thought of all these things this past weekend. It is only to provide food for thought, and perhaps some casual "aha!" moments, for other people, and maybe to provide a basis for my own and others' further reading and writing.