#AutisticAF

Content Warning: Intense emergency room scene. Brief mentions of suicidality, mild profanity.

Subscribe to hear new episodes when they publish…
Apple • Spotify • PocketCasts • Amazon/Alexa • Audible • All Platforms

INTRO

Hi! I’m Johnny Profane.

If you’re here… Good chance you know autistic folk. Maybe care for one. Work with some. Hell, you may be one…

So I’m guessing you already know many autistic kids learn language… differently.

And some remain nonspeakers for their whole life.

But one language processing difference seems to stump everyone. Even close friends & partners…

How can a seemingly well-spoken autist be enthusiastically jabbering away one moment…

Only to turn stone silent in the next.

Selective mutism…

Maybe the hardest disability for anyone to understand. Or… believe.

Even tho for folks like me… It’s frightening.

Real talk. About what it’s really like…

And I end with 11 easy strategies I use when I have trouble speaking. You’re bound to find a couple you want to try.

Maybe… some things to help you understand. Or share with folks you know… care.

Episode

I call this story… “Selective Mutism: I Have No Mouth. But I Must SCREAM…” cuz that’s what really happened.

“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…

And so I find myself in the ER. Again. Second time in 2 years. Suicidality.…

I try to answer. So 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 FRANTICALLY… but without words… Images, feelings, physical impulses, sense input…

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

Strapped to a gurney, unable to move my arms, NO CLUE what’s going on inside me… or out. Panicked. Is this…

Death?

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

“Not…” Long pause. “Jah… jah… jrah.” I pause. I 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’s going on. Or why my mind… is now 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. YOURS WILL DIFFER.
Also, the emerging term, “situational mutism,” is preferred by many autism activists. It is more accurate, not implying conscious control. Also it may be less stigmatizing.

Most folks know autistic kids can experience delays in speaking. Some may remain nonspeakers their entire lives.

But most non-autists… even parents… have no clue about other persistent language differences autistic folks may face…

Some kids get labeled “mute” by the education system… only to begin speaking in grade school… or later.

Some kids, like me, may begin verbalizing at the late end of the “normal” range… but speak in fluent sentences early. Sounding like tiny adults.

A lot of us also experience speech impediments like stammering or stuttering… under stress.

But selective mutism… an inability to speak in specific situations… yet well-spoken in others…? Seems to be the hardest for anyone to understand. Or… believe.

In my life, I’m known as an avid reader. Articulate. Sometimes an impassioned speaker.

Which is precisely why parents, teachers, employers, clients, friends… romantic partners… interpreted my mute episodes as purposeful. Willful. Even manipulative.

And cops & therapists? They projected even darker motivations…

See… Selective mutism means to involuntarily lose the ability to speak… in part or total. Under “select” circumstances. But not others.

Might be around certain individuals. Or certain types, like authority figures.

Sometimes it seizes control in specific situations. Say, social gatherings, public performance, or harsh sensory input.

For some autists, it becomes a generalized response to being overwhelmed.

For me, selective mutism is a range.

It can begin as overwhelming “reluctance” to speak… But under great stress? I can’t even force my tongue & jaw to form the few words I try to say.

Pros used to call the phenomenon “elective mutism,” cuz they thought it was voluntary.

It is NOT.

It’s an irresistible force. The effort to fight it?

Exhausting.

---

I don’t know how others experience mutism. And I can’t even imagine what nonspeakers go through.

So I “speak” only for myself. Hoping it sheds light.

To survive as an autist in straight culture, I rely on my learned, studied ability to say the right thing. At the right time. With the “proper” tone. Which takes a lot of skull work. Cuz none of this is natural to me.

Which makes my mind… my go-to survival device.

So… Losing my language ability?

Scares me shitless. Scares me more than being lost. At night in a forest. Without a compass. And no direction home…

Often it happens to me when I’m stressed… Usually overwhelmed by social contact. But it can also happen when I’m tired. Or… for that matter., joyfully excited.

I’m pretty damn articulate. I’m known for my wiseguy humor, intelligence, compassion…. But then, of course, there are those sudden meltdowns.

I’ll be 70 next year. So, I’ve been dealing with this for a long, LONG time.…

WHAT’S MY SELECTIVE MUTISM LIKE?

In social situations, I may become mute many times a week. It happens in stages… altho not smoothly. Mixed, overlapping.

I may feel as if I don’t have the energy to talk. Sometimes in mid-conversation. I begin to have trouble finding words. And forming sentences. I may substitute unusual or inappropriate words for common objects. Or people.

It’s like a tip-of-the-tongue experience on steroids. I know what I want to say… in that I have that feeling of knowingness. But words, phrases, they won’t come out. Or, in severe cases, can’t even come to mind.

This alone… struggling to find a word… may UP my anxiety or frustration level. I stammer or stutter. As if my jaw, lips, tongue, throat are flailing around. Something like when I lose my balance and my arms fly in all directions as I fall. Wild, panicked attempts to return to “balance.”

The internal urgency… maybe anxiety mixed with frustration mixed with forceful compulsion mixed with severe embarrassment… It may heighten from here fast. At some point, my brain freezes. Everything shuts down.

My mind and body… simply give up?

Sometimes the experience is so intense I have a “white-out”… Just bright white light in my head. For a moment, no awareness of surroundings. This is rare for me, I think fewer than a dozen times in my life. Each time I felt what I perceived as life-threatening levels of stress just before.

This process can seem like an eternity. Falling from intense conversation into wordless, animal-like moans & grunts… But to outside observers, it must seem rapid.

Even my wife, who knows me well, may not notice these “stages.” I go silent after brief stammering. Or sometimes I seem to transition into a nonverbal, but loud meltdown… Roaring. Perhaps attempting to avoid a shutdown?

In another style of mutism…

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

In that case, my internal experience is like waking up groggy.

I may be alert, experiencing my nonverbal intelligence… meaning sensory stimuli, even imagistic thoughts… But my jaw doesn’t want to move, words won’t come.

At least they don’t make it from my declarative mind to my mouth. Much like waking up from deep sleep… But only in the speaking part of my mind.

HERE ARE SOME MORE EVERYDAY EXPERIENCES OF SELECTIVE MUTISM. THEY MAY SOUND FAMILIAR.

In a business meeting with an important, but hostile client. Unable to contribute to the discussion. Despite my expertise, obligation, and desire to do so.

Called on in class by a domineering teacher.

Stunned into silence by a harsh or demanding comment.

When overstimulated by many sensory or emotional inputs.

Sometimes when ill or in pain.

Startled. By anything. A passing car shadow…

These are common situations that most humans face. And many folks may be shy, after all…

Still, selective mutism is different from what most humans experience. It’s totally unexpected. It’s out of your control. It tends toward complete inability to speak. And it happens enough that it impacts social life, career, education…

It’s a disability. Invisible. And… silent.

I’ve been mute more times than I can count in front of pros. Psychiatrists, psychologists, therapists, educators. Many interpreted my silence as intentional. I caught labels… “resistance,” “passive aggression,” “manipulation.” In other words, conscious or unconscious attacks aimed at them…

Um… No. Honestly… They weren’t the center of my world in that moment.

Same thing with doctors, dentists, lawyers, business partners…. even if they have different names for it.

Some educators, from elementary to grad school, had difficulty with my mutism. Because, in most contexts, their main complaint was I spoke too much. So my silence seemed resentful, rebellious…

Close friends or loved ones have accused me of being angry. Emotionally distant. Having affairs. Hiding something… “Playing mind games”…

You get the idea. Let’s just say, if I have such motivations for my unexplained silence, I remain… to this day… the last to know.

Ya know, law enforcement officers? Tend to interpret my difficulty speaking in, shall we say… “unfortunate” ways.

Fellow poker players, ditto. The few times I’ve played cards outside of childhood. I can’t seem to win anything that involves reading or masking emotion….

Another, random, unexpected interchanges in daily life… like a rude store clerk… can stun me into silence.

Just so you know, I believe some parts of my story do not relate to selective mutism… directly.

Stammering, stuttering, panic, embarrassment, brain freezes, “white-outs”….

They may be my panicked attempts to fight the process in public. And… or… to avoid the later shame from panicking or melting down in public.

And to my knowledge, selective mutism is not about losing consciousness or awareness. But panic attacks, caused by public shame, can be severe enough to cause weird symptoms. Including hallucination and dissociation. Trust me.

Here’s one last detail, before explaining how I’ve come to deal with mutism…

Two times I stayed on the psych ward for suicidality… which I now recognize as extended panic attacks. Medical staff 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 tho… I’ve never had any form of intoxicant within 24 hours of any trip to the ER.

Even tho… The blood test they “threatened” me with? Could only have revealed I drink about a six-pack a week. Rolling Rock. Cuz it’s cheap and decent.

See, in the scene that I began with, I tried hard to overcome the mutism. Struggled to get SOME words out. I wanted to explain what was happening to the med techs.

But all my long pauses between words, the poor oral-motor coordination… and a few nonsense syllables… only convinced them I was drunk.

#ThanksMedicalModel…

OKAY. HOW I DEAL WITH MY SELECTIVE MUTISM

First, I’ve explained this process to a few loved ones, most notably my wife. They know what to look for. OFTEN, they may see the symptoms before I do and alert me… I may get louder. I may stammer or stutter. Become fixated on finding “the right word.” Could speak over everyone else… May have longish pauses & glazed eyes as I focus on my chaotic experience inside…

Second, I use my own hypervigilance to observe me.

Like some autists, I suffer from alexithymia. Which means it’s hard for me to know my own feelings.

BUT, I’ve also become good at hypervigilant observation. If I’m talking to you, I’m glancing at your face every few seconds. Checking for micro-grimaces, vacant eyes, eyebrow gestures, tiny shrugs.

I may not… usually don’t… interpret what they mean correctly. But I know something’s up.

So I learned to look for my micro-gestures… to avoid or lessen social difficulties. Is my stomach nervous? Diaphragm or shoulders tight? Am I getting louder? Having trouble finding words?

But if I ignore that first warning, I’m likely to end up mute.

Third, I can’t afford shame anymore.

I don’t hide shit. I tell the person in front of me that I’m having trouble speaking. Sometimes just saying it out loud makes the effect subside. At least, it reduces their astonishment.

BTW, talking to myself out loud is another survival strategy. It clarifies my purpose. Gives me direction. It keeps me focused in a way internal thought frequently fails.

Fourth, I use techniques that I found help return balance…

• Asking for a moment to collect my thoughts. Then consciously pausing… observing my body, mind, breath. Sometimes it takes a while until they slow down enough I’m able to pick one to say. But after some practice, I can know in a few seconds whether I can continue a conversation… or must seek alone time.
• Another… A few deep, slow abdominal breaths… what some folks call “cleansing” breaths. Many times a day, this can head off some episodes.
• A brief break alone in a quieter, darker room. No Facebook!
• A brief walk alone. Without unnecessary stimulation. NOT the time to walk my dog, Buddy.
  • Focusing on any detailed, pleasurable, physical activity… sweeping the floor, watering plants, shaving… Anything not involving language.
• This one’s good… I carry a notebook. Scribbling a word or sketch can communicate something to those around me. At times, that alone re-establishes my emotional balance and language ability.
• Most of all… Late in life? I’ve learned I can find something to love in most humans… But I can’t talk with everybody. So now I choose to talk with those who love me.

THE PANIC OF A WORDLESS, “HIGH FUNCTIONING” AUTISTIC…

Who relies on articulate speech as his chief defense in the world…

Is never a pretty thing.

But I’ve found these strategies can help me, my loved ones & the public from the worst effects.

OUTRO

I want to share something.

I’m coming to terms with my variable ability as an Actually Autistic podcaster…

I’m finally admitting to myself I CAN’T predict new episodes…

I intended to publish a new episode approximately weekly.

Sometimes I can. Sometimes I go a long time when I can’t.

Looking like this is gonna always be true.

Many of you write to say you found value here. I want to do better for you.

But being real here… I suggest you subscribe to the blog, my YouTube channel… or wherever you get podcasts.

When I have the spoons… Trust me. I’ll be working to not disappoint you.

But I don’t want you to miss an episode. So consider subscribing. It’s free.

But… as always…

The best support you can offer…?

Share this episode with a friend that you know… cares.

---

Further reading

Reddit’s r/SelectiveMutism has some decent resources.

Wikipedia gives a good basic overview and some great links in their footnotes.

Subscribe to hear new episodes when they publish…
Apple • Spotify • PocketCasts • Amazon/Alexa • Audible • All Platforms

Support AutisticAF.me here: Paypal · Ko-Fi · Facebook Pay “Johnny Knapp Âû“