For me, the challenging part of being an autistic adult has never been about a neurodivergent social style, or even primarily about sensory processing. It’s about the daily struggle to control my own body.

Many autistic people have this to some degree. We frequently discuss a limited loss of voluntary motion: losing speech. We’ve seized on the term “selective mutism” (a separate diagnosis defined in the DSM to explicitly exclude autistic people), but most of us don’t report the “selective” pattern of mutism, where someone consistently speaks in one setting but not another, classically a child who speaks at home but not at school.

Instead, we go mute intermittently, when we’re experiencing sensory overload, are drained from performing at work or at an event, have anxiety over an interpersonal interaction, or have been alone for long enough to get out of the habit of speaking.

This intermittent mutism is, for me and many other people, part of a larger cluster of experiences: Chronic catatonia. Most symptoms of catatonia involve freezing up or slowing down, but an inability to inhibit repetitive actions or physical agitation can also show up. This is a recent example from my life:

I have been trying to finish a take-home exam. I can’t start. Every little thing I do seems to take forever, punctuated by long periods of sitting, kneeling, or lying down staring at nothing. At one point, I pick up my phone, wanting to email my professor asking for an extension on the due date.

Instead, I end up on YouTube. I watch one video, then another––two won’t hurt––but two hours later I realize I’m stuck in a loop, wanting to stop but unable to inhibit the next click every time one video ends.

I can’t move from my seat on the couch to do anything else, anyway. Eventually, late at night, I find myself stuck in an awkward position, half-kneeling on the floor and arms spread out on the couch, trying to reach my laptop to send that email. I can’t move at all for maybe 20 minutes, but I don’t panic––I’ve been through this hundreds of times before. I know that eventually I’ll get to my computer, and I do.

The catatonic spectrum

If you have intermittent mutism, you probably know very intimately that there are many different gradations and expressions of mutism, beyond the obvious one where you can’t speak at all. For me, levels of mutism include:

• Being able to speak normally, except to bring up one topic that I want to but am afraid to.
• Being able to speak but not say “no” or anything to that effect.
• Not being able to speak normally at all, but appearing normal-ish because I (not necessarily voluntarily) reply with empty niceties or whatever my brain assumes the other person wants to hear.
• Being very limited in my speech, slow and halting and not able to say what I mean directly, but able to utilize what I can say and people’s reactions to it to eventually get a situation resolved.
• Being unable to speak at all, but able to type or write.
• Being unable to speak, and having my hand freeze up when I try to write, or my legs refuse to move when I want to stand and get something to use for communication.

But this mutism is itself part of a broader spectrum of catatonic experiences, including:

• Being stuck in a weird pose, completely unable to move, yet displaying “waxy flexibility”––like a posable doll, if someone were to move my position, I would hold it.
• All of the above, but with only parts of my body impacted, e.g. I can move my left arm but not my right.
• Lying in bed unable to get up for hours after waking every day, unless I have a strict routine of getting up at a prompting event (like an alarm clock, or a certain amount of time before a bus comes that I really need to catch).
• Sitting in the car for half an hour after parking. Sitting on the toilet seat for over an hour after showering.
• Staring off into space while sitting/lying somewhere much of the time.
• Being able to move in most ways, but not to move to initiate a specific task. Starting anything that’s complex and unfamiliar will usually induce this. I’ve spent days or weeks trying to start a specific project at work and mostly doing anything else instead.
• Consuming media on my phone or laptop until I’m saved by the batteries dying, or perhaps for over 24 hours straight if it’s plugged in. Being unable to stop doing this no matter how increasingly desperate I get to do other tasks, take care of my physical needs, or stop consuming content that isn’t healthy for me.
• Spending hours on my phone or laptop because I can’t move well enough to do anything else.
• Automatically following instructions or assumed expectations from other people.
• Being able to walk again but only if I’m walking with someone.
• Moving jerkily and/or slowly, sometimes with bad balance.
• Various forms of mental shutdown in stressful situations, such as large sensory-overloading, unstructured social gatherings.
• Temporary physiological changes including extreme susceptibility to cold, reduced strength and endurance, and a difference in heart rate.

Of course, other people will experience catatonia in their own ways. I give these examples so you can start getting a feel for it. An internet search for “autistic catatonia” will turn up less-personal lists.

Chronic catatonia will generally involve recurring episodes of more severe catatonic symptoms alternating with ones so mild they blend into normal behavior or other conditions––inability to initiate tasks can look like ADHD; sitting dully on the couch after work can look like exhaustion; trouble getting out of bed can be mistaken for depression.

One common misconception is that losing speech or catatonic symptoms more generally are caused by anxiety. I find that just as inaccurate as the assumption that sensory overload is always experienced as (or caused by) anxiety. I can be catatonic seemingly due to any of these conditions:

• I just did something stressful or energy-intensive.
• I’m afraid of a negative social response, e.g. in reply to a text I sent.
• The next task is multi-step, unfamiliar, and/or involves unknown steps, so my brain figures it can’t start.
• Nothing’s wrong, but there also isn’t anything to prompt me into motion. My conscious mind feels like an irrelevant voice, shouting on the sidelines but unable to actually command whatever part of my brain controls motion.
• I’m lost in a daydream or in rumination.
• I’ve been engaged in an addictive habit so much that my dopamine system doesn’t respond as well to other needs.
• I’m anxious or conflicted about whatever I’m trying to do and thus freeze up.
• I’m tired.
• I’m extremely enthusiastic about some idea, with thoughts and excitement running so intensely through my brain that I paradoxically can’t actually move to implement it, something I refer to as “short-circuiting”.
• I’m in a stress vortex, where I urgently need to get something done (e.g. leave the house and go somewhere) but the catatonia that started for any of the above reasons threatens that goal, creating more and more stress in a downward spiral with worsening catatonia.

Managing chronic catatonia

I highly recommend Dr. Amitta Shah’s book on autistic catatonia for anyone trying to manage the condition––with the caveat in mind that it wasn’t written by or for autistics and has a small amount of hurtful rhetoric and not enough first-hand accounts. She identifies several key aspects of life that can reduce chronic catatonia: Structure, routine, stress management, and active relaxation.

Structure provides an external impetus to action. Catatonia seems to impact the ability to initiate actions for internal reasons severely, but sometimes makes movement automatic when it comes to following external orders. This, of course, can be dangerous for the catatonic person, but a milder version of an “order” that works for milder symptoms of catatonia can just be having a certain place to be at a certain time.

For me, I flourished in the corporate workforce beyond anything I could have hoped for given the severity of my struggles in high school and college––homework and studying were things I was supposed to do on my own in unstructured time, but a 9-to-5 corporate job provided external structure and reduced my catatonia.

Routine helps as well, in part because it’s associated with structure and in part because I can carry out a habitual sequence of actions almost on auto-pilot once I get started. I only have to overcome catatonia enough to start the first part, not fight it at every step.

Knowing how much routine helps and how much is too much is a tricky balance, and that makes stress management hard, too. Too much stress reduction, and you’ll be catatonic because you don’t have any reason to keep going. Even if that didn’t happen, I find that stress-induced catatonia can be a welcome price to pay for living the life I want to live.

On the other hand, sometimes catatonia alerts me to a stressor that really isn’t necessary––caring too much about what strangers online say, for example. But what really helped me in Shah’s book was the concept that you can reduce stress by doing more, a practice known as active relaxation.

Breaking the relaxation Catch-22

Trying to do too much causes catatonia. Most activities recommended for taking a break from the stress, like soaking in a warm bath or watching TV, only deepen catatonia because of their passive nature.

I remember trying to explain this to more than one frustratingly ignorant therapist over the years, and was even more frustrated by the Catch-22 in my day-to-day life. But it turns out that you can do things that are both active and relaxing, and that those will reduce catatonia symptoms.

For me, drawing is probably the best of these. It requires mental attention, unlike taking a walk which sometimes backfires because I remain lost in thought. Yet there’s nothing stressful about concentrating on drawing, unlike, say, reading all the doom on Twitter.

Yes, if I’m already catatonic I have to use techniques to break catatonia enough to gather my art supplies and sit in an appropriate position, but overall the physical difficulty is small enough to be therapeutic rather than overwhelming.

Doing chores on a routine schedule can also be helpfully relaxing, and picking up gardening during the pandemic has been really good for me. You probably have things you already like to do or would like to do, but you might cut back on them when stress and catatonia flare up because they don’t seem as important as whatever you’re stressed about––but that’s exactly why you need to do them.

Breaking out of catatonia in the moment

Those are all things that can lessen the experience of catatonia overall, but what helps when you can’t move right now? Shah recommends caregivers provide prompts––verbal commands or understandable gestures––that may need to be more specific, breaking down a complex motion into simpler ones, depending on the severity of catatonia.

To my astonishment, I found that mentally ordering myself to move (“Left arm, open the door, right arm, grab your keys, loop bag around your shoulder, swing your legs around”––now I’m out of the car!) actually worked. I can’t always get myself to mentally give the orders, but it’s a habit I try to cultivate.

I also have many other techniques I’ve discovered by trial-and-error:

• If I can get to my phone and turn on an audiobook, I can often then put my shoes on or take the trash out or do other rote tasks. 
• When I was in my late teens and often got stuck in poses standing, I noticed my body made tiny muscular adjustments to keep my balance. I couldn’t make a movement happen, but I could block the micro-adjustments toward one side but not another, until I fell forward in a facsimile of a step. 
• Walking with other people, close enough that I’m swept up in their momentum or actually asking one of them to put their hand on my arm.
• Having a one-on-one conversation.
• Emailing whoever I’m responsible to that I need more time to reduce the stress and break the catatonia. 
• Texting someone to schedule an event can create structure that lets me move, especially if I know I have to complete a list of things in a couple hours or less before the scheduled event. 
• I’ll also “work through” the catatonia, making what movements I can when I can and eventually transitioning from being stuck to moving slowly and jerkily to eventually moving fine, much the same way I might start moving my mouth silently and work up to speaking audibly to break out of mutism.
• Using the app Habitica to get into the habit of following certain checklists, which can then act like the verbal prompts discussed above––but only if I don’t get in the habit of ignoring them!

Living with catatonia

Overall, I had a good life that I’m proud of long before I knew why I couldn’t move or initiate tasks and faced so many other challenges. Catatonia can stop you from moving or speaking, but it doesn’t stop you from living. Here are some of the ways I’ve coped with ongoing catatonic experiences:

• Reminding myself every night of the things I did do. Despite being catatonic most of the day, I could easily have done multiple things that moved my life forward, created good memories, or contributed to others’ well-being that just didn’t take a lot of time or movement.
• Working and pursuing other activities on the computer. I was a professional software developer for several years, and am now back in school online. I find it’s a lot easier to complete tasks that don’t require movement beyond typing.
• Working with teams of people, both professionally and in the community, so I can make significant contributions in short bursts and other people build on that work even when I’m incapacitated. Teams also create external structure and obligations that can provide the impetus for motion.
• When I can’t move very much, doing something that “gets the ball rolling” for future activities––requesting a form, messaging someone to ask if they want to hang out in a couple days, emailing someone asking for advice, creating a list of supplies for a project.
• Appreciating life––thinking about everyone who is out there enjoying themselves, gazing at the patch of sky I can see through the window from whatever weird angle I’m stuck at, meditating, daydreaming, feeling the texture of the carpet or the coolness of the air I breathe.
• Pursuing my goals and responsibilities with persistence and grit, even when that means doing something difficult while experiencing catatonic symptoms of often rapidly-varying severity.

Going forward –– Co-creating catatonia knowledge?

One thing I haven’t been able to do is access medical care from anyone who knows anything about treating chronic catatonia. I’m on ADHD meds, stimulants that I think coincidentally help with my catatonia––but whether a given drug helps or hurts is specific to the individual and terribly under-researched.

Too many autism researchers are fixated on a narrow and in many ways misguided conceptualization of what it means to be autistic, and the psychiatric field as a whole has unjustifiably sidelined catatonia research for decades. Amitta Shah’s groundbreaking book, the first on autistic catatonia, only came out in 2019––twelve years after the first time I found myself in a state I described as “being buried alive in my own body.”

I didn’t frame this article as chronic catatonia vs selective mutism to demand that we all stop using the term “selective mutism.” Nor do I want people who don’t truly experience chronic catatonia to try to read it into their experiences just because they sometimes lose speech.

Rather, I know that “selective mutism” is part of how many autistic people understand their experiences, as a result of one of our great strengths: Autistic co-creation of knowledge about autism.

Since selective mutism is something we already know, it seems like a good hook into a topic many of us know implicitly, a basic reality of our lives, but haven’t had a name for. Autistics and others with chronic catatonia can build on the limited work of researchers and clinicians in understanding this condition, and together we can find more and more of the answers we need.