Selective Mutism: Frozen in Silence

By Traci Noelle | Jan. 09, 2017

 

There are some situations in which I’m literally unable to speak. I’ve been this way for almost my whole life due to an anxiety disorder called selective mutism. Selective mutism is considered a rare disorder, but the prevalence—which ranges from .03% to 1%—could be an underestimation.

I was within the typical range of onset, which is children under five. Most often, symptoms become apparent when a child begins school. Because my family struggled with their own mental health problems, I lived my entire childhood and much of my adulthood undiagnosed. Looking back, I can clearly see the symptoms. As a child, I hid behind my parents’ legs when someone tried to have a conversation with me. In some settings, I could only whisper to someone I felt comfortable with. Everyone thought I was just shy.

But selective mutism isn’t shyness.

German physician Adolph Kussmaul called it “aphasia voluntaria” in 1877. In 1934, child psychologist Moritz Tramer coined it “elective mutism.” Both terms reflect the notion that professionals considered this form of mutism a refusal to speak—an oppositional or defiant behavior. The DSM-IV adopted the term “selective mutism” in 1994, reflecting the reality of the disorder as the inability to speak.

According to the DSM-5, selective mutism is often accompanied by a social anxiety disorder. Separation anxiety disorder, phobias and situational oppositional behaviors are also common. At school, children bullied me for being chubby, and I couldn’t stand up to them. I couldn’t even ask my friends for help, and my silence perhaps implied consent. And because of that experience, I developed PTSD.

How to Help

Left untreated, selective mutism can have a devastating impact on a life. After a series of failed relationships and failed jobs, I had lost hope for a decent life. Angry and embittered, I had a meltdown on social media. After that, I was diagnosed with selective mutism, and a team of caretakers communicated with me via Pinterest. They helped me process my past and emotions using images.Treatment for those living with selective mutism often requires a bit of creativity, like this. It might include any (or all) of the following:

  • Encourage progressive communication—starting with signals, then one-word sentences and gradually full sentences. This can be done using cameras, recordings and play therapy.
  • Have the child sit in a room with someone they talk to and gradually bring other people into the room.
  • Make accommodations in the classroom and offer specific encouragement in other social settings, like extracurricular activities and parties.

If you know anyone who might be living with selective mutism, here are a few tips to communicate with them:

  • Use gestures, images, email or texting.
  • Let the person know what’s coming so they can mentally prepare, especially when something changes or a transition is imminent.
  • Choose activities that can be done with or without speech, like puzzles, watching movies, or reading.
  • Know their coping skills. Have non-verbal signals for distress, such as rubbing an ear.
  • Don’t call attention to their disorder in public. It can make the person anxious or cause setbacks.

Above all, please remember that people living with selective mutism are just like you. Don’t assume they are weird or stupid or unable to comprehend anything just because they can’t verbalize it.

 

Traci Noelle, author of “Two Hands: Use rituals to create your own peace from Borderline Personality Disorder,” has been running away from home on a sometimes bumpy, but always interesting road, since 1995. Traci settled in British Columbia, Canada, where she writes on her blog, Letters to a Young Borderline.

Comments
Mercedes
Thank you for writing this my son has it, and he brings me joy to know that I am taking the right steps to help him.
1/15/2017 10:43:51 PM

Anon
Thank tou for sharing. I stumbled onto this post at 4am and im glad i did. My husband has selective mutism when he gets to upset. And it took years for me to actually know that. You see he has depression and when he gets overwhelmed or upset he curls up anywhere couch, bed the floor once. And doesnt speak. Or nod. Or cry. I started off angry when it happened. Because as versed as i am on my own illness (bipolar disorder) i had never seen anything like this. It could go on for days. He WOULDN'T TALK TO ME. So i yelled at him. I cried at him. One time i poured water on his head and he barely blinked. And thats when it hit me something was very wrong. I mean i knew something was wrong but this was beyond anything i ever thought. So from them on i just cried. That song, say something im giving up on you, by a great big world, had become our anthem for our relationship.


One night i was sitting on the floor next to the couch staring into the muted eyes of someone who could be so vibrant. Someone who i felt i was losing. I was alternating between giving him space and whispering that i loved him and things would get better. They always get better. We could have been on hour 3 or hour 30. When his brain takes him away time becomes meaningless.
I asked him if he needed anything. No response.
I said, i love you.
No response.
I said, can you hear me?
No response.
And then i finally said something that had never occurred to me before.
Can you speak?
A slight head movement.
My heart stopped. But my brain went "Duh. Some advocate you are" So i said squeeze my arm once if you cant talk. He squeezed once.

TLDR: My husband didn't have the words to tell me he had selective mutism. So i had to guess. It only took 2 years.
1/10/2017 5:26:17 AM

Liza
This article hit so close to home. I have also had selective mutism for as long as I can remember and I also self-diagnosed it. I didn't talk AT ALL at school until about 6th grade. Then, I was forced to open up and I was a nervous wreck every second that I was at school. I'm doing better now, sm still gets the best of me sometimes. I recently wrote an amazon ebook about my experiences growing up with selective mutism and it really helped me put all of that behind me.

https://www.amazon.com/dp/B01N7QBBMO
1/9/2017 11:22:10 PM

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