Selective Mutism: I Have No Mouth. But I Must SCREAM7 min read

“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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