Selective Mutism: I Have No Mouth. But I Must SCREAM

“Okay. Looks like this one’s just a drunk.”

The other tech says, “Try again. It looks like he’s trying to say something.”

“Are you okay? Are you okay? ARE YOU OKAY?”

Like they’re talking to a Japanese tourist, and if they just shout loud enough… he’ll understand English…

I’m in the ER. Again. Second time in 2 years. Suicidality.…

I try to answer. So very hard. My jaw won’t move. My tongue’s a stranger in someone else’s mouth. The best I can squeeze out is yet another groan….

Yeah. I’m fully aware, fully awake. Thinking URGENTLY… but nonverbally. Images, feelings, physical impulses, sense input…

Harsh lights. Another patient moaning down the hallway. A LOUD crash — one cart into another, unidentified metal things clattering on the floor…

Strapped to a gurney, unable to move my arms, I have NO IDEA what’s going on inside me. Panicked. Is this…

Death?

I moan. But can’t get words out… Scared out of my mind. Finally…

“Not…” Long pause. “Jah… jah…jrah.” Pause. Swallow. “Drunk.”

“Sure, hon.” Says the first tech. Then to the other guy, “Listen, let’s go do the gunshot. Come back and check on this one in 20.”

He taps a quick note into the laptop, “alcohol inebriation,” then they rush out. And that’s that.

I’m alone. Confused. Disoriented. Panicked. No idea what is happening. Why my mind… Which has been my only reliable strength in my life… is failing.

Have I mentioned I’m now alone in a room filled with sharps… AND suicidal?

I want to, I must SCREAM. But I have no mouth…

Selective mutism isn’t just embarrassing…

It can be dangerous.


Note: This is my personal experience. And, below, personal coping strategies.

I don’t know how others experience mutism… and can’t even imagine what non-speakers go through.

And as is my autistic habit, this may be way too detailed…

I’m in my 60s, and generally, pretty damn articulate. Despite my other autistic weaknesses, I’m known for my wiseguy humor, intelligence, compassion… and sudden meltdowns.

To survive straight, neurotypical culture, I rely on my learned, studied ability to say the right thing at the right time. My mind is my only real strength….

Losing my language ability? Shudder.

It happens frequently for me when I’m stressed, usually socially overwhelmed, but it can also happen when tired or even joyfully excited.

I’m really old (for an autistic male). So, I’ve been dealing with this a really LONG time.…

What’s MY selective mutism like?

It happens in stages– although not smoothly, but mixed, overlapping… insert video of dam bursting in slo-mo here…

Editor’s note: I wasn’t sure if Johnny meant this literally or not. But I thought my confusion would be amusing, so here’s the best I could find– just in case.

In social situations,

I can become mute many times a week.

  • It may begin by having trouble finding words. Like a tip-of-the-tongue experience on steroids. I know what I want to say in that I have the feeling of knowingness… but words, phrases won’t come out. Or, more severely, can’t even come to mind.
  • This alone, simply struggling to find a word, may ratchet up my anxiety or frustration enough that I begin to stammer or stutter. As if my jaw, lips, tongue, and throat are flailing around, something like when I lose my balance and my arms flail in all directions as I fall– emergency, wild, panicked attempts to return to “balance.”
  • The internal urgency– which may be anxiety mixed with frustration mixed with forceful compulsion mixed with severe embarrassment– may heighten from here rapidly. At some point, my brain freezes. Everything shuts down. Not a rational choice. It’s just that mind and body… Give up?
  • Sometimes the experience is so intense I have a “white out”… Just bright white light in my head. Briefly, there’s no other awareness of surroundings.

This process, falling from intense conversation into wordless, animal-like moans and grunts, can seem to take an eternity to me, but outside observers apparently see it happen rapidly.

Even my wife, who knows me well(!), may not notice these “stages.” I’m just suddenly silent after brief stammering. Sometimes I seem to segue into a largely nonverbal, but loud meltdown, perhaps attempting to avoid shutdown?

In another style of mutism,

I may simply have been alone for a long time. When my wife visits, or company shows up at the door, I either feel like I’m not “inclined” to speak, or can’t find many (or any) words for a few minutes… sometimes an hour or more.

  • In that case, the internal experience is very similar to grogginess upon waking up. I may be fully alert, experiencing my nonverbal intelligence, sensory stimuli, even imagistic thoughts, but my jaw doesn’t want to move, words don’t come, or don’t make it from my declarative mind to my mouth. It’s very much like waking up from deep sleep, but only in the speaking part of my mind.

Here’s one last detail, before explaining how I’ve come to deal with it: In two of the times I’ve been hospitalized for suicidality– which I now recognize were extended panic attacks before I recognized what they were and how to deal– medical staff have notated I was drunk. Once they even “threatened” to test me.

In fact, alcohol abuse is now part of my “permanent record,” mentioned by every service provider who takes the time to look at my history.

Even though, I’ve never had any form of intoxicant within 24 hours of any time I’ve resorted to the ER. Even though a simple blood test could have revealed I drink no more than a six-pack a week.

See, in the scene I began this post with above, I tried extremely hard to overcome the mutism and get SOME words out to explain what was happening. Apparently the long pauses between words and the poor coordination of mouth, jaw, and lips, and a few apparently nonsense syllables convinced the techs that I was drunk.

#ThanksMedicalModel…

How I deal with my selective mutism

  1. First, I’ve managed to explain this process to a few loved ones, most notably my wife. They know what to look for. Often, they may notice the symptoms before I do and alert me
  • I may get louder
  • I may stammer or stutter
  • I may become fixated on finding “just the right word”
  • I may start having longish, glazed-eye pauses as I focus on the internal experience of overcoming that “tip of the tongue” feeling
  • I may unknowingly begin to speak over everyone else, caught up in the unfolding internal drama
  1. I use my own hypervigilance to observe me. Like some autists, I suffer from alexithymia, difficulty knowing my feelings, motivations, and other internal states. But, I’ve also become adept at hypervigilant observation, noting tiny cues in others: micro-grimaces, glazed eyes, eyebrow gestures, tiny shrugs. I may not, usually don’t know what they mean, but know something’s up. So I’ve learned to  carefully observe myself whoever I’m with, frequently avoiding social difficulties. AND now I’ve learned to use that skill on myself:
  • Is my stomach nervous?
  • Diaphragm tight?
  • Am I getting louder?
  • Having trouble finding words?
  • Etc
  1. I tell the person I’m with, if I have reason to trust them, that I may be having trouble speaking. Sometimes simply acknowledging out loud it may be happening can make the effect subside. At the very least, it reduces their astonishment. (By the way, talking out loud to myself is another survival strategy for me. It clarifies my purpose, gives me direction, and keeps me focused in a way internal thought frequently fails.)
  2. I try a number of techniques that I’ve found may return balance:
  • Asking for a moment to “collect my thoughts.” Then consciously, mindfully pausing, observing my body, mind, and breath. If the rush of verbal thoughts returns, continuing to observe my internal states until they subdue enough to pick one thought to express. In detail, it sounds tough. In practice, within a few seconds, I know if I can continue or must seek alone time.
  • Three or so deep, slow abdominal breaths– what some folks call “cleansing” breaths– many times a day. This simple practice can head off my more severe difficulties, including mutism.
  • A brief break alone in a quieter, darker room. No Facebook!
  • A brief walk alone without unnecessary stimulation. This is not the time to walk my dog, Buddy.
  • Focusing on any detailed, pleasurable, physical activity… sweeping the floor, shaving, watering plants– anything not involving language.
  • Sometimes scribbling a word, brief note, or sketch can both communicate something to those around me, or even re-establishing balance and language ability

The panic of a wordless “high-functioning” autistic, who generally relies on articulate speech as their main defense in the world, is never a pretty thing. These are some strategies I’ve found so far that may protect the public, loved ones, and myself from the effects.

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8 Comments

    1. Author

      It was awful for me for a very long time.

      I just didn’t know it.

      It may have even been harder on others. I’ve become aware just how much I used anger to cover up the experience… As in lashing out before full shutdown set in to distract or deflect….

      As I began to understand I was autistic, and with support of my non-autistic 3rd wife, it got much awfuller… For a time. As I noticed how often it happened, understood what was happening, more aware of the effects on others….

      With the changes I made mentioned in the post, it has gone to being much better.

      And in a weird way, joyful.

  1. Out of curiosity: if I were to meet someone with selective mutism who was struggling, would it help to say something like “take your time; there’s no rush”?

    1. Author

      Damn fine question….

      Not absolutely sure.

      My wife says similar things quietly. At first, it didn’t help, I think. I was so caught up in the internal anarchy, I think it was one more sensory & emotional input….

      A distraction.

      But as I’ve learned she’s patient and loving… And doesn’t judge me…

      I don’t feel like it’s my duty to protect or reassure her. Not another social situation where I MUST protect the Other…

      I think it’s become a comfort.

      So I’m NOT sure… A wise question. One worth thinkng about…

      Perhaps caution?

      1. I’ll think about it. My hope would be to help remove pressure and stress if possible, and to show that they don’t need to worry about me judging them or becoming impatient.

        It must be frustrating to be unable to speak when you want to.

        1. Author

          I’m still learning… Turns out my tendency to become silent in large groups of intimates and what I think of as speaking “grogginess” (difficulty speaking after periods if silence) are likely also less dramatic signs of selective Mutism….

          I had no idea.

          But it makes sense.

          The biggest frustration?

          Neurotypicals’ tendency to assign motive to my varying language abilities, from easy and verbose in non-stressful situations… To silence & resting bitch face in family & purely social gatherings.

          It’s not Manipulation, superiority, disapproval, prudery, anger, etc. Etc. ETC…

          It’s shutdown.

          1. Thank you for sharing. I did not know about some of those things.

            Neurotypicals assign motive to a lot of neurodivergent traits, it seems. Even something as simple as wearing headphones!

            I wonder if it’s the neurotypical “mind-blindness” of not understanding that others’ brains and thoughts might be different from their own. They put themselves in our shoes instead of listening to us.

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