Interlude: Autobiographical Note (Autistic Catatonia, Part 2 of 5)

My interest in the topic of Raymaker's research is profoundly personal. 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. 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: I suspect at this point that, in my own case, my transition from moderate to severe "autistic burnout" was actually the onset of mild autistic 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, sometimes (not always) describes the onset of autistic catatonia, and that the overlap has not been well recognized by researchers. Autistic catatonia is a much more well-established clinical term than "burnout" (which is still quite colloquial), 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 few years. Scholarship on autistic catatonia has heretofore suggested that catatonia is most common in young people, especially adolescents and young adults. However, a comparison of the literature on autistic catatonia with the literature on autistic burnout may show us that autistic catatonia is much more common among adults than has previously been realized.