Situational Mutism: All the Things I Never Got to Say

I’m Max, and I have situational mutism.

I always thought it was just me. It was just in my head. Just a personality flaw. I was just shy… I was just too quiet… it was just out of my control.

As long as I can remember, I’ve had trouble speaking. To classmates. To teachers. To professors. To waiters. To strangers. To friends. Even to my parents.

It’s not something I can fully explain, even now at age 19… but sometimes when I want to speak, when I need to speak, I just can’t.

Imagine writer’s block for your vocal chords. You’ve got a conversation you want to join or start and you want to speak. You have the words right there, swimming in your head. You know what you want to say. You open your mouth. You try to speak…

But you can’t.

And you don’t even really know why. You try to talk, try to move your vocal chords, but your throat won’t let your voice out. You could try for hours and it wouldn’t work. You’ve tried before. You’ll try again.

I’ve lived like this for a long time. Far longer than I’m willing to stomach. These “mute attacks” rule my life. I couldn’t speak to my classmates, my teachers, the school nurse, other kids I didn’t know. It took massive efforts to break the silence, and now I’m way better at speaking than I used to be, but muteness still prevents me from so much conversation I desperately want to have.

Of course, I wasn’t mute all the time. When I was around people I was comfortable with, like my brother, my parents, or quiet friends at school, I could talk freely… and when I was most relaxed, I spoke my fair share! I screamed, yelled, laughed, annoyed the hell out of my parents, joked, conspired – everything kids are infamous for.

But being mute always got the fattest slice of my time. I was known as the really quiet girl, and I’ve been living under the weight of that label for a long time. It’s so lonely, so frustrating, so depressing. Imagine being an extrovert who goes mute (it’s… wild. Trust me.) People lose interest… and they treat you like an object.

Both kids and adults seem to think that a person without a voice is a person undeserving of respect. They mock you to your face, and when you don’t laugh they mock some more; they get angry and punish you; they ignore you. They think you have no personality, no opinions, no intelligence, nothing worth listening to.

Dead wrong. 

But how would they ever know that? They can’t hear that joke you cracked, that point you made, that tidbit of information you had to offer. They can’t hear you desperately hoping you’ll finally break the silence this time, repeating the dog-eared words you wanna say over and over, but failing time and time again to get them out.

They don’t know that deep down, you believe that you’re a radiant, funny, playful, affectionate, dimensional person trapped in the labyrinth of your vocal chords. You are the only person who’ll believe in you, because you’re the only person who knows. But the years go on and you keep being that boring quiet kid… how can you prove who you really are when you can’t say a word?

I don’t know how to begin to describe how trapped, stupid, useless, cowardly, boring, bored, frustrated, enraged, isolated, etc. ad infinitum living like this has made me feel. See, I never knew that this “mute switch” was something that other people suffered from too. Until a week ago, I thought it was just me. 

Because a week ago, I realized that all of the above – the silence that’s swallowed me whole, trapped me in my head, crippled my voice – isn’t normal. I realized that my quietness is a pattern. I realized that even though I’ve made huge strides in overcoming my mutism, I have a long long way to go. I realized that this is not living, and if I want to start, I have to overcome this. So I did what any self-respecting person with a question and a keyboard would do. I Googled it.

Selective mutism – sometimes known as situational mutism – is a childhood anxiety disorder in which a child is physically unable to speak in certain social settings because the expectation to speak makes them so anxious – 90% of children with SM also have social anxiety. It’s caused by genetic predisposition, an inhibited personality, childhood loss, even seemingly nothing at all, and it’s most often diagnosed between the ages of 3 and 8. The earlier you spot it, the better chance you have at beating it, because it’s not something you just “grow out of” yourself.

My first thought: oh my God! I’m not crazy! IT’S NOT JUST ME! I’m not a freak! It’s not all my fault! There’s a name for this!

My second thought: holy shit, I’ve got a LOT OF WORK to do.

I have a few thoughts bouncing around my head about how religion and my situational mutism intersect… and I’m sure I’ll share ’em soon. But for now, I thought I’d make this rambly post just to celebrate, get out 19 years of silence for the first time out of my system, and spread some awareness! Maybe there’s someone else out there whose AAH! AHA! moment is waiting for them. If so, here it is 🙂

If you wanna learn more, check out Amber Colon’s blog (she’s an advocate, making a documentary, & recovered from SM), iSpeak (by actual people with SM), and SMIRA (lots of good resources for parents & teachers).

PS: I know this post is not the most concise or eloquent… but my whole life, I’ve been held back by wanting to make things perfect, being afraid of how people will respond. I refuse to do that today. My hands have got a lot of slack to pick up! 🙂

Photo credit: Pedro Ribeiro Simões, Flickr ]

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4 thoughts on “Situational Mutism: All the Things I Never Got to Say

  1. Ubi Dubium August 3, 2016 / 2:03 pm

    My youngest is like this too. She has social anxiety, ADD, and Aspergers. She won’t talk, or when she does talk in public it comes out in hesitant spurts of a few words, and many times she just gets stuck and gives up. At home, or in situations where she’s comfortable she’s mostly fine. Even then, sometimes we have to have her stop, breathe, think about what she is going to say, and then start over. Trying to do a presentation for school is just beyond her. Usually she has to make her presentations to the teacher one-on-one, because getting up and speaking in front of a group is just not happening.

    Is there anything specific that you have been doing that has been helpful for you?

    Liked by 1 person

    • maxgoesgodless August 4, 2016 / 2:04 am

      Hmm… well, there are differences between being socially anxious, going nonverbal when you’re autistic, and having SM. With SM, you physically cannot speak in some situations, often without even understanding why (I still don’t really.) This differs from social anxiety or shyness (although 90% of kids with SM have social anxiety too.) So what works for me might not work for your daughter if she doesn’t have SM.

      Easing out of my SM was VERY self-driven (no one realized I had SM so I had to help myself), mostly by “riding” new life changes. When you’re SM, you develop a reputation for being the “girl who doesn’t speak,” but when you meet a new group of people (moving schools, joining an activity) you get a new chance. Each time I set goals for myself that felt huge (like speaking to one person) and over the years I painstakingly won more ground.

      But your daughter’s already way ahead of me 😉 she has you on her side! If she does have SM, early treatment is CRUCIAL because SM does not just get better with time. It’s great to hear that her teacher is accommodating. Treatment plans I’ve seen for kids involve behavioral, CBT, or art therapy, and working with the teacher, family, and even whole class via stimulus fading and video (http://www.selectivemutism.org/faq/faqs/how-is-sm-treated)

      The key is to never pressure her to speak and NEVER give up on her no matter how frustrated or disinterested you may feel. 🙂

      Liked by 1 person

      • Ubi Dubium August 4, 2016 / 2:52 am

        We’ve learned about not pressuring her to speak. She’s also often the “girl who doesn’t speak” But she can usually do very well if it’s just 1-on-1 with a teacher, enough that she won a couple of departmental awards. But getting teacher accommodation will be a lot harder for her next classes, since she just graduated high school and we’re contemplating how to handle college. I think our local community college may have an office for Special Ed, and I think we’ll be talking to them next.

        Like

      • maxgoesgodless August 9, 2016 / 5:50 pm

        Well, best of luck to her and you, and I hope she finds the accommodations she needs. If your daughter ever wants advice, or empathy, or even just someone to commiserate with 😉 just shoot me an email! 🙂

        Liked by 1 person

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