Chronic Autistic Catatonia 101
Do you sometimes lose the ability to move, completely or partially? Do you go completely mute at intervals, or find that you can only say certain things? Do you chronically struggle to initiate various sorts of actions? Do you find yourself glued to your phone or computer for hours on end because you can’t actually get up or focus and do the thing you really want/need to do? Does it take you hours to get out of bed in the morning? Do you get stuck in the bathroom or in the car? Do you sometimes move very slowly, and/or jerkily? Have you ever gotten stuck standing in place when you try to go through a doorway?
If you have symptoms like these, you might be experiencing chronic autistic catatonia. If you’re like me, you may not even know for sure you’re autistic, and you’ve been to many mental health and medical practitioners over the years, none of whom had any insights into your symptoms.
Luckily, we can finally have answers to this mysterious disorder. Psychologist Amitta Shah published Catatonia, Shutdown and Breakdown in Autism: A Psycho-Ecological Approach last summer, the first detailed explanation of this condition. And she offers ways to manage it. The rest of this post draws on her work, my own experiences, and stuff I remember from articles that come up when you google “autistic catatonia”.
What is chronic autistic catatonia?
Catatonia is normally thought of as an acute condition, most characteristically where someone is lying around in a stupor or stuck holding a certain pose for a prolonged period of time, but there’s a ton of other variations. Those can include just having very slow movements, or even very excited movements. The insight with autistic catatonia is that a significant subset of autistic people experience catatonia as a chronic condition, varying from low-level symptoms where it’s hard to initiate actions and we might appear “lazy” or fatigued, to intermittent episodes of complete immobility. Intermediate stages can include being able to move to do certain activities but not others, or being able to move some limbs but not others.
A lot of what autistic people call “selective mutism” in themselves is part of the spectrum of autistic catatonia, too. Instead of being proper selective mutism, where the person can’t speak in certain situations but can in others, chronic catatonic mutism is usually intermittent rather than selective. That is, you may normally be able to talk to your family, but one day when you’re particularly stressed out you can’t. Or you can bring up some topics but not others that you find threatening–for example, you might be able to talk to your boss as required to support them and do your job well, but not to ask for anything (favors, a raise) from them.
There can also be autonomic nervous system symptoms. I sometimes experience lowered heart rate, extremely low blood pressure, or lowered body temperature that seem to be stress-related.
Who gets chronic catatonia?
Autistic people of all “functioning” levels are equally likely to get chronic catatonia. Catatonia is commonly misunderstood and poorly researched, but it affects people across many psychiatric diagnoses, so my personal suspicion is that we’ll find out that non-autistic people can also have chronic catatonia with similar symptoms to those described in autistic people.
Shah finds that catatonia is most common in those autistic people who fit the passive subtype. That means that if you look back to how you socialized as a kid, you didn’t necessarily do a lot of odd things socially and you were more-or-less capable of interacting appropriately in response to someone initiating social engagement with you, but you were unlikely to initiate social contact yourself.
There isn’t a hard-and-fast rule to what age autistic catatonia manifests at, but it most often has its first clear onset in teens and young adults. It can be precipitated by school stress, interpersonal conflict, or loss of external structure, routine, and activities. For instance, someone graduates from school and doesn’t have a job. They’re spending a lot of time at home without much to do, and they’re not able to create new routines and initiate activities for themself. This becomes a downward spiral, with them becoming less able to initiate actions the less they’re doing, until they’re in a stupor.
Or, like with me, the increased rigors and demands of higher levels of education coupled with inadequate structure and support leads to a crisis. I first become fully immobilized one morning when I was 16 and a senior in high school, the day an important college scholarship application was due. I hadn’t written the essay for it, and indeed hadn’t been able to write essays or do most homework for years. Once I worked through the immobility, I was in fact able to write the essay, but the catatonia symptoms kept recurring and worsened during my second semester in college. It’s been a decade since then and I’ve never been free of at least the low-grade symptoms, like having trouble getting out of bed or initiating certain actions, not for a single day.
Can medications treat chronic catatonia?
The jury’s out on this one. There’s no medications proven to treat autistic catatonia, but there are many, many incidents where someone with chronic autistic catatonia was given medications that drastically worsened their condition. This is because medical practitioners often overreact to a catatonic episode and administer high doses of medications like benzodiazepines, anti-psychotics, and anti-depressants that result in extrapyramidal side-effects that worsen the catatonic symptoms. Seeing the condition getting worse, practitioners often up doses or pile on more meds instead of removing the one that isn’t working. So it’s actually more likely that your condition will improve if you’re on medications and reduce them, than if you’re not on them and add them. (Talk to you doctor and don’t take this blog post as medical advice, though.)
That said, in my anecdotal experience, medications prescribed to treat ADHD have made it easier for me to initiate actions. This makes sense, because people with ADHD often have motivational issues that, well, make it hard for them to initiate actions unless there’s a stimulating factor like novelty, urgency, or behavioral addiction or special interest. The neurological basis for autistic catatonia is unknown, but one hypothesis is that catatonia is caused by drops in dopamine levels. If that’s the case, the apparent symptoms and neurological causes of inability to initiate action in ADHD and chronic autistic catatonia overlap. I’m taking low doses of methylphenidate and bupropion, both of which increase dopamine levels. Other medications I’ve tried in the past (SSRI and SNRI antidepressants) did more harm than good.
Can talk therapy treat chronic catatonia?
Forms of talk therapy like CBT don’t seem to help with chronic catatonia symptoms, though of course you might want talk therapy to support you emotionally in the struggle and help you make decisions and formulate strategies for living a full life with chronic catatonia.
Well, what works then?
Prompting
One of the characteristics of chronic autistic catatonia that I didn’t mention above is that the catatonic person can often follow external orders or prompts, and may in fact be compelled to obey what they know or think another person wants even against their will. A lot of the time partial mutism or partial immobility takes the form of being able to go along with someone, but not to contradict them or assert oneself. That’s the bad side of this aspect of the condition, but the good side is that other people can usually get someone moving again if they know how to do it. Sometimes people with chronic catatonia can even find ways to prompt themselves, or get an external device to do it.
Prompting can be verbal or nonverbal. A nonverbal prompt might be something like walking alongside the catatonic person, or putting your hand on their arm if they need a little bit more–most of the time they’ll be able to walk with you. Or it could be holding an object out to someone that they need to do their next action, like handing someone their shoes when they’re struggling to get ready. Pointing or other gestures to indicate the next action might be useful as well.
Verbal prompts are what they sound like–telling someone to do something. These will have to be broken down into more-specific steps the worse someone’s catatonia is. For example, to get out of the car, I might need to prompt myself like this: Lean over and pick up your bag. Put the strap on your shoulder. Grab your keys, put them in your pocket. Open the door. Put your foot on the ground.
Shah says that not even high-functioning autistic people can prompt themselves, but after reading her book I decided to try and it usually works. I just mentally verbalize commands like the ones above, until I regain fluid motion and can just do something by, well, doing it, or nonverbally sending the command to my body. That simple trick has revolutionized my everyday life. Other people might need to try other methods–for instance, Shah describes someone who records herself giving various commands she might need later on her phone, and plays them back when she needs them.
Another way I prompt myself is by using the productivity gamification app Habitica, where I’ve listed tasks that the app will hold me accountable to doing on the days they’re scheduled.
Routine
It’s way easier to autopilot yourself through a conditioned, routine action than it is to initiate one-off actions. Additionally, routine can just keep you used to being active, and reduces stress for autistic people.
Routines attached to external structure or prompting of some sort are probably going to be necessary. If you’re struggling with chronic catatonia, your ability to create a routine for yourself without structure is likely highly impaired. It doesn’t matter how hard you try to willpower yourself into it.
A regular, 9–5, Monday-Friday job is great external structure. College class schedules can be chaotic and overwhelming, but if they’re not, that’s great structure too (and even if they are, they may be better than no external structure). Scheduled tasks in Habitica are doing a great job providing structure for me right now (in fact, that’s why I’m writing this post today).
If you have a caregiver or are a caregiver, don’t make the mistake (Shah sees it a lot in various forms) of failing to provide external prompting or routine out of some misguided belief that the catatonic person will learn to function better without help. They’ll function better with help. Having the support you need to live a life you want to live is a key factor in achieving independence, not a hindrance to it.
Active Relaxation
Catatonia symptoms are stress-related. To manage them, you need to relax. But there’s a problem. What does relaxing look like? Lying in bed reading on your phone? Watching Netflix from the couch? Soaking in the bath daydreaming? All of these look… exactly like some forms of catatonia, including full stupor.
I struggled for years with the fact that anything I tried to do to relax either just deepened the stupor, or turned into an addictive habit. Maybe I’d go on an 8-day binge reading a fantasy series and barely doing anything else, including eating or sleeping. Maybe I’d spend years spending many hours a day on a certain website centered around entertainment or social media, feeling ever-increasing despair about losing myself and all my opportunities in life. Addictive behaviors are related to catatonia in two ways: one form of catatonia is getting stuck looping through a repetitive behavior, unable to inhibit the action the same way you’re usually unable to initiate actions; and behaviors like browsing social media that only require very tiny amounts of movement may be a refuge from catatonia when they’re the only thing you can do.
So passive relaxation isn’t the answer you’re looking for. Instead you want to do active forms of relaxation. Here’s some examples:
- Drawing or various other art forms
- Having a gentle one-on-one conversation with an accepting person
- Exercise
- Actively learning or exploring
Active relaxation may be hard at first, because you might not be able to initiate the activity. Prompting and routine can help. Or just wait until you can, and do it then. It should put you into a positive feedback loop, where the active relaxation activities reduce your catatonic symptoms, which make it easier to do the active relaxation.
What does it feel like when you can’t move or speak?
Mostly frustrating. It’s very rare for there to be any slowdown in the catatonic person’s thought processes or sensory functioning, though there was one period of a couple months when I was in a deep depression when those were slowed down. But normally we’re mentally alert and nimble-minded, thinking all sorts of things we want to do or say but unable to. Eventually I might give up and drift into a daydream or something.
It can be scary if I’m in a situation where I might not be safe–maybe there’s a cop or security guard nearby who might not understand my behavior, or maybe I have to walk home alone in the middle of the night or cross a street when I might not be able to move fast enough to avoid getting hit by a careless driver. I often feel scared and desperate when there was someone with me, but then they leave the room and leave me alone, or I think they’re about to. Sometimes I follow people around with my eyes, silently pleading for them to come and talk to me or walk close enough to prompt me into following them or something. One time someone called an ambulance on me, which was totally unnecessary and stuck me with hundreds of dollars of out-of-pocket costs, so sometimes I worry about that happening again, too.
It’s very frustrating when I’m in a partially-mute or partially-catatonic state and can’t set boundaries with someone. I’ve been in boring or even traumatic intimate situations as a result of that. Sometimes I might give in and try to enjoy going along with them, since that’s all I can do, but if the situation’s serious, I’ll work toward being able to communicate in some way–maybe by grabbing a phone and typing on it what I can’t say, maybe by abruptly standing up, maybe by starting with an innocuous line of conversation and slowly working up to what I want to say.
This condition sounds severe, can you live independently with it?
Yes! I’ve lived on my own for almost 12 years since I was 17, including for several months when I was 17–18 and immobile for most of the day almost every single day. I wouldn’t advise leaving someone to fend for themself with that level of impairment, but we can adapt to the condition and do what we need to, both to survive and to accomplish what we want in life.
I’m highly accomplished. I was valedictorian of my high school, graduated summa cum laude with my bachelor’s degree, and quickly received promotions at my professional job. At 24, I reached a six-figure income. I became the youngest team lead in my department, and my team scored the highest on an internal performance metric the one calendar year I was the lead the whole time.
At 27, I quit my job to live off my savings and be an activist, doing what I felt was most urgent and important for me. I became a major organizer of some of the highest-profile activist campaigns in my state, and I went into high-intensity, dangerous situations again and again as part of our tactics of nonviolent civil resistance.
I did all of these things while experiencing catatonic symptoms on a daily basis and without caregivers or other support for my symptoms (even when I lived at home in high school my parents weren’t very present). It required dedication and persistence more than anything else.
I’m not saying everyone with chronic autistic catatonia can be high-achievers by normal cultural standards. I achieved what I did by sacrificing some areas of my life, and I failed at many things I tried, desperately wanted, and thought I “should” be able to do. Luck, adequate financial resources, and my own unique profile of abilities all contributed to my successes. Like with anyone, my achievements were all based on societal support and interpersonal collaboration–we don’t accomplish anything alone, and some people just don’t have as favorable of circumstances as others. And I don’t even agree with the cultural norms that people “should” be successful or high-achieving, or live up to any other standards other than to avoid harming others when possible. But I’m proud of what I’ve accomplished, and grateful that I was able to make my life contain more than just the daily struggle and the self-loathing created by internalized ableism over autistic catatonia symptoms that I didn’t have any word or explanation for.
I want to counter the narratives about autistic people and about people with chronic autistic catatonia in particular that portray us as inept, as less-than neurotypical people, and our lives as less valuable, important, or interesting. You’re just as important and your life is just as meaningful if you haven’t graduated school, held a job, or been able to engage in many activities. Survival, experiencing the world, and being yourself are their own tremendous accomplishments–and they’re the ones that really matter when all the insecure social B.S. is stripped away. I hope knowing more about autistic catatonia makes you more accepting and proud of yourself, as well as happier, more relaxed, and however much more competent you can be with greater knowledge of techniques for managing the condition. I’ve found that one of the best things about having this kind of disability is how deeply I can enjoy so many things in life that others take for granted but that I might be experiencing for the first time or the first time in a long time. Work toward the life you want, whatever that looks like, however you can, with the abilities you have–that’s what success really is.
