Autistic Catatonia and Autistic Burnout: Conclusions, Suggestions, and Take-Aways (Autistic Catatonia, Part 5 of 5)

Recognizing the overlaps between autistic burnout and autistic catatonia may help us to "pool" our knowledge about these disorder(s), in order to better understand how to prevent their onset. While clinicians writing about catatonia generally claim little knowledge of how and why catatonia might emerge, autistic people often have a very well articulated sense about what things might bring on autistic burnout. If in fact burnout and catatonia overlap, then it falls to reason that the autistic community has a well developed collaborative understanding of the natural causes and precursors of mild catatonia. These causes include major life changes, illness, and other well recognized stressors, just as clinicians have speculated, but they also include features that clinicians might be less prone to spot themselves. Autistic people, for example, are much more likely to focus on the demands of masking as a major source of autistic burnout. They are likewise much more likely to focus on unmasking as a source of recovery. 

Just as significantly: recognizing this overlap may help us to pool our knowledge in such a way as to treat these disorders more effectively. Autistic people have produced a wealth of treatment advice internal to their community, which often focuses on rest, on unmasking, and on taking leaves from work, school, and play wherever possible--sometimes much longer leaves than would seem normally advisable. Clinical psychology offers environmental and psycho-ecological approaches to catatonia, which underscore the wisdom of conventional autistic treatments for burnout, while simultaneously emphasizing the risks of letting burnout go unchecked. It also offers potential pharmaceutical treatments, as clinical studies have shown that lorezapam is very commonly effective among people with catatonia. A person suffering from extreme autistic burnout might inquire with a physician about trying a course of Ativan in order to help treat or to help rule out catatonia (although of course not all catatonia responds to lorezapam). Patients suffering from mild to moderate catatonia might benefit from reading Dr. Raymaker's "Defining Autistic Burnout," and in particular the wonderful and moving recommendations on pp. 138-139, as to how to recover from burnout. Patients suffering from more profound catatonia, or their families and caretakers, might benefit from reading Dr. Shah's Catatonia in Autism, which emphasizes the catatonic patient's intensive need for intensive care and support, and outlines what kind of support might be most helpful--in contrast to some writings on burnout, which emphasize the importance of independence and self-sufficiency. 

Dr. Raymaker's work on autistic burnout contains an invaluable table of suggestions for surviving or avoiding burnout. It bears noting that, elsewhere, Dr. Raymaker has explicitly distinguished between autistic burnout and catatonia, suggesting that catatonia may be feature in burnout but that burnout itself is a distinct, and generally broader, phenomenon. Yet these suggestions (found on pp. 138-139 of her 2020 article) may help those suffering from catatonia as well as those suffering from less severe forms of burnout. I also list them here in order to synthesize them with some of Dr. Shah's recommendations, discussed below.  

Many people suggest finding communities and social connections where masking is unnecessary, or otherwise finding ways to unmask:

"[My burnout] might have even come sooner than it did had I not been around some communities of people who were generally more accepting of ‘‘quirkiness,’’ and so provided some periods of time where I likely was needing to mask less, or less intensely."

"The biggest thing of all you can do to prevent, or at least mitigate burnout, is to start identifying what you do when you Mask and stop. Even just little things like eye contact, which so many of us do, or at least pretend to do. Allow yourself not to be sociable if you don’t want to be."

Many people also suggested withdrawing for a while, by self-isolating or by finding other ways to decompress: 

"Give yourself a break, go hole up in a cupboard under a blanket for a few hours, or.run or cycle really, really fast (sometimes the wind rush can literally help clear away the cobwebs because so much sensory information is cut out). A big sensory break every few days, or weeks, coupled with smaller sensory breaks throughout the day could make the world of difference."

"Take a spiritual retreat [laughs] like that’s not a definite way of curing it but that’s the only way I came up with is give yourself a break, withdraw into your own world and give yourself a break."

"I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could."

At the same time, those interviewed frequently emphasize reaching out to others and being able to request and accept support. Frequently, they emphasize the importance of a supportive and understanding network: 

"Have a healthy support system set up of people who will accept you as you are and not try to change, fix or shame you."

"Having a supportive person or persons who understood my anxieties in their complexity and helped me face what I could not change by understanding why it was so difficult for me. Having a loving support system that would respect and allow me to just be how I was until I could sort out the issues."

"Try to find people who.accept you and I know that’s not always, you know, not always possible but community is out there you know, if the person has a way to connect to it, the community, that’s a good source of support."

"Learning to be able to ask and accept help from trusted authorities (Ask and Tell by Stephen Shore is a good book)."

"Asking for help and accepting help is an important skill to succeed through autistic burnout."

This emphasis on finding and receiving help is also found in Dr. Amitta Shah's recommendations in Catatonia, Shutdown and Breakdown in Autism. Shah's book is an invaluable read, and cannot be fully summarized here, of course; my selection of her advice is very partial and my selection process was entirely subjective. Shah is very transparent that the book is designed for clinicians and caretakers; it is definitely not a DIY guide to recovering from autistic catatonia. Some autistic people may even find its language (including use of terms like "high-functioning") to be a bit off-putting.  Shah is very direct about the challenges of living alone for those who might be recovering from catatonia; one of the strongest recommendations of this book might be for the person in burnout to find a way to get as much direct support as possible. She suggests that a great deal of support may be necessary for recovery, and that even one-on-one support might be necessary in the early stages of healing.

Many of Shah's recommendations for managing catatonia echo those provided by autistic people for managing autistic burnout. This is so both at the level of individual suggestions and at the level of broad themes. The studies of Shah and of Raymaker et al. are united in recommending lots of support. They differ, however, in two major ways. First, while (as I am suggesting) there is substantial overlap between burnout and catatonia, the overlap is not total, and catatonic breakdown is frequently much more severe than other forms of breakdown or burnout, requiring much higher levels of support. Second, while the advice collected by Raymaker's study was directed toward autistic adults, Shah's advice is intended for those who support them.

Perhaps as a result of these functional differences, the recommendations of Shah and of Raymaker can sometimes diverge in important ways. In those cases, I typically found Shah's work to be counterintuitive and sometimes even corrective of my own approach to healing. One example had to do with its attitude toward total rest. Shah also points out that the wrong kind of rest and immobility can actually make the problem of catatonia much worse, especially when it produces too much withdrawal and isolation. The divergence of Shah and Raymaker's advice may suggest that many of the strategies which are useful in states of mild autistic burnout can in fact become counterproductive, or even dangerous, in cases of catatonic burnout. 

Far from secluding themselves in order to rest until they are fully recovered, Shah suggests, the catatonic person should receive as much support as possible in order to help them maintain their day-to-day physical routines. (The demands of this kind of care are major. For many autistic people, receiving this kind of care would likely involve moving into a group home or moving in with family.) In fact, much of the role of the one-on-one carer as envisioned in Dr. Shah's book is to help catatonic people to maintain as much of these daily routines as possible. She writes, 

“It is extremely important that the person should be given support, assistance, and as much help as they need to complete activities and to keep to their routine as much as possible. Although this seems obvious, parents and staff are often unsure as to how much help to give a person and how much to leave them to their own devices. I have come across very well-meaning parents, carers, or teachers who have left the individual to complete activities like eating, washing and dressing even if it is taking hours to complete. They, understandably, find it difficult to provide help and assistance to an individual who has been independent previously. I cannot emphasize enough how important it is to provide the help and support and to keep the person moving through their routine of activities throughout the day.”

Elsewhere as well, Shah cautions her readers against either a) too much passive rest or b) too much focus on independence and self-sufficiency. Instead, she proposes that people in catatonic breakdown might seek all necessary and possible support in order to continue going about their daily round, and especially to participate in their favorite activities, rather than be homebound as a result of their growing catatonia. She suggests that it is better for people in catatonic breakdown to travel to favorite places, in supported ways--for instance, by being driven, or even using a wheelchair as necessary--than simply to stay homebound.

Helping the catatonic person maintain physical routines should not necessarily require the catatonic person to speak extensively: “It is more important to relate to the individual through physical activities than through verbal discussions." At times, expecting too much spoken communication--especially around decision-making--can actually increase the pressure on the catatonic person, in a way that can lead to further deterioration. Prompting the catatonic person to act can often be extremely important in helping a suffering person go about their daily round, especially if they are prone to freeze or to get "stuck," but this prompting is often most effective when it takes the form of a gentle touch or a nonverbal form of signaling. She writes, for instance, that if the autistic person is "standing still and staring into space," an effective prompt might be "a light touch," rather than explicit verbal direction. The picture that emerges from many of Shah's examples is that of a friendly, companionable, even communicative silence. 

Shah's writing underscores the value of even silent or relatively passive companionship for those struggling with catatonia. She writes,

“Providing one-to-one support to the individual is effective and beneficial at various levels. It provides security and reassurance to the person that they will not be left in a ‘paralytic’ state (which must be very frightening and stressful in itself)." 

The traumatic and traumatizing aspects of catatonia are not always well understood, but it is my view any my experience that PTSD is a very likely outcome of autistic catatonia, especially among people who are not supported and who are accustomed to living independently.  Undiagnosed and untreated PTSD among sufferers of catatonia may also contribute to the risk of suicide, which is a documented risk of both catatonia and burnout.

Significantly, while Shah is explicit about the risks of pressuring autistic people to speak or to relate to other primarily through speaking, she says very little about other forms of social performance such as masking, whereas autistic people themselves frequently put a very great degree of emphasis on masking as a factor in all forms of burnout. Patients suffering from catatonia might also be encouraged to unmask, as by stimming freely, by feeling free or having "permission" to avoid eye contact even in social situations, or in whatever ways feel safe and comfortable to them. Some autistic people choose to wear a face mask, even when not at risk of respiratory illness, because it lessens some of the burden on them to manage their facial expressions. Many autistic people are hyperaware of the ways that they mask in social situations and might welcome a chance to discuss these masking strategies, with a goal of figuring out how to circumvent them in order to avoid or lessen burnout. 

In general, Shah emphasizes the importance of helping the autistic person maintain physical routines; relating to them through physical activity (rather than excessive verbal demands); and helping them stay connected to the things and places they most enjoy. She cautions the reader against over-emphasizing independence or self-sufficiency. Instead, she suggests that the caretaker or helper should do whatever they can to help the sufferer maintain consistent, timely, fluid physical routines, and to maintain strong attachments to their favorite things in life.  The words "joy" and "favorite" emerge several times in Shah's work: the catatonic person should be directed toward activities and venues which have previously brought them maximal joy, and they should be provided with any assistance necessary to help them seek out their favorite things: favorite activities, favorite meals, favorite social settings. Again, Shah suggests that, where an autistic person's mobility prevents them from going out into nature or visiting favorite restaurants in the way that they ordinarily might, they should be supported in any way they can to make this visit safely. 

An implication of Shah's advice is that autistic people in catatonic burnout might have to make peace with relying on others and even giving up some independence and self-determination for at least a short time, and perhaps longer--a sacrifice that can be very difficult for many of us to make, for a range of reasons both good and bad.  On reflection, I feel that Shah's recommendations--with their emphasis on giving and receiving support--offer those with lower support needs a chance to interrogate some of their own internalized ableism. Independence and self-sufficiency are sometimes treated as self-evidently valuable by those who write about autism. Yet valuing independence can be a way that people with minimal support needs aim--often subconsciously--to distinguish themselves from those with higher support needs, typically because of unexamined and internalized prejudice against more visibly disabled people. An excessive focus on "independence" can thus divide the autistic community along lines drawn by internalized ableism. These kinds of distinctions--and a subconscious drive, common among some autistic people, to differentiate themselves from those who need too much help, too much support--may not ultimately be the best foundation for autistic activism or autistic politics, since they exclude so many people for whom self-sufficiency is neither possible nor desirable. A politics of seeking and giving help might not only be the best for our community; it might also serve as the best basis for the recovery from burnout, especially burnout so profound that it has become catatonia. 

If indeed it is the case, recognizing that autistic burnout and autistic catatonia are related are related phenomena could have many benefits for autistic people. Here are a few that come to mind. 

* The first is simple safety. Catatonia is a dangerous condition, and autistic catatonia is progressive if unchecked, often moving from mild to severe. Autistic people experiencing burnout should understand the signs of autistic catatonia so that they can self-monitor. They should know when to request medical supervision or even go to a hospital for care.

* Another benefit has to do with disability rights and disability advocacy. People with autistic catatonia frequently have a hard time seeking or explaining their need for accommodations, which may differ from the accommodations needed by other autistic people in the same workplace, or from the accommodations needed by the same person before the onset of catatonia. Recognizing autistic catatonia as a disorder with its own prognosis, separate from the autism itself, may help sufferers of catatonia to articulate their needs better and to get better supports at school or at work. 

*Likewise, understanding the link between autistic burnout and autistic catatonia might help autistic people to seek better medical care. Autistic people are used to being turned down, minimized, and even gaslit when they bring their concerns about autistic burnout to doctors. The term "burnout," which is commonly used to refer to a depressive lack of interest in work or to a period of normal strain and fatigue, may obscure the seriousness of the medical problems that autistic catatonia actually entails. It is possible that, if autistic people were to inform their doctors or psychologists about medical catatonia/catatonic deterioration, and to use the language of catatonia/catatonic deterioration, they might be able to have an easier time communicating their medical concerns, and thus to have more helpful conversations with their doctors. The risk of further deterioration might thereby be avoided. 

* 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. By providing autistic people with the language of catatonia, we may lessen their isolation and thereby even their PTSD symptoms and suicidality. 

* Studying the link between autistic burnout and catatonia might 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 milder forms of autistic burnout and 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. The term "catatonic burnout" might usefully enter the lexicon of phrases to describe these conditions (along with "catatonic-type breakdown" or "catatonic deterioration") in order to help bridge the language of these two communities (autistic people and clinicians).