The New York Times: Autistic Burnout as a "Secondary Pandemic" (Autistic Catatonia, Part 1 of 5)

In the middle of COVID-19, the New York Times ran an article which I have since sent to more people than I can count, as it explains, in part, what happened to me during the pandemic (and which never stopped). The title of the article was "'The Battery’s Dead': Burnout Looks Different in Autistic Adults." In autistic communities, the term "burnout" generally means something almost entirely different, and radically more severe, than in neurotypical communities. In the Times article, the reporter--Beth Winegarner--attempts to explain the phenomenon of "autistic burnout" for a lay audience. As she writes, "[A]utistic people, at some point in their lives, experience [burnout] on a whole different level. Autistic traits can amplify the conditions that lead to burnout, and burnout can cause these traits to worsen. They may become unable to speak or care for themselves, and struggle with short-term memory." Winegarten reports on the experiences of autistic adults who are unable to do anything but their jobs (no cooking, cleaning, socializing), and on others who can't get out of bed for days. During COVID-19, Winegarten suggests, burnout was so prevalent among autistic people that it had become a "secondary pandemic." 

Perhaps the greatest value in Winegarten's article is how strongly it validates the experience of autistic burnout and how persuasively it shows it to be a large-scale social problem. As Winegarten acknowledges, none of her proposed recommendations can be complete on its own. Moreover, all of them pose enormous challenges for already-burned-out autistic people. Most burned-out autistic people are likely already trying to sleep and/or unable to do anything else. Likewise, most burned-out autistic people likely already understand themselves to be lonely (if not outright despairing of human connection). Yet Winegarten's own article provided me, at least, with a sense of imagined or vicarious human connection, simply by showing that my experience of profound autistic burnout was not occurring in isolation from others but was itself, in a sense, a social phenomenon, one that linked many people together. Her piece is well worth reading even years after its publication, for its discussion of how burnout arose during the pandemic and for its careful and empathetic treatment of individual examples. 

While noting the paucity of sources on "autistic burnout," generally speaking, Winegarten's NYTimes article does note a small 2020 study by Dr. Dora M. Raymaker et al., titled "Defining Autistic Burnout." Dr. Raymaker is Research Associate Professor at the Regional Research Institute for Human Services in the School of Social Work at Portland State University. They are also a founding member of the International Society for Autism Research’s (INSAR) Autistic Researchers Committee--a fact I note here to point out that Dr. Raymaker, themself, is autistic, and that their research is more knowledgeable about and concerned with the use of the phrase "autistic burnout" as it occurs within autistic communities.

Notably, the work of Raymaker et al. focuses on those who are in what I would personally consider to be mild to moderate. These individuals are often losing executive function and self-care skills, but not yet losing motor skills. They are too exhausted to do anything but work, but not yet unable to get out of bed. They avoid speaking, or may have problems speaking, but are not yet nonspeaking or nonwriting. Raymaker et al themselves acknowledge that further work on the topic could benefit from including those with higher support needs in their study; I would suggest that it could also benefit from including those who were diagnosed with minimal support needs but who experience more profound forms of burnout. 

Perhaps the most beneficial, and moving, dimension of Raymaker's work is found in Table 3, on pp. 138-9 of the study: in it, Raymaker outlines a page and a half of suggestions made by a number of autistic people as to how best to get support from or recover from a period of burnout. Of particular note is Dr. Raymaker's observation that suicide prevention programs should consider the potential role of burnout: it is a persistent finding of such studies that autistic people in autistic burnout are at significantly increased risk of suicide. The study is very worth reading, in general, but even if it were not, it would be worth reading for Table 3 alone (which I will discuss in more detail later in this series of posts).