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 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.

Comments
Molly
I think I may have had Selective Mutism from 5th grade on, up until college, although I am not sure. I didn't speak at all throughout middle school and high school, except at home, but everyone just assumed I was really shy, and sort of weird because I didn't speak. It all started in 5th grade. My parents divorced, I was diagnosed with Epilepsy, I began to develop, and I was separated from all my friends at school. I remember my mom saying to my grandmother "I wish she just had cancer so I wouldn't have to deal with her meds and her seizures for the rest of her life." After that I started to feel deeply ashamed and different. The medication made me chubby also, and I developed severe depression as well. I remember trying really hard to speak, but I just couldn't. The other kids terrified me due to my low self-esteem. I maintained straight A's but I couldn't say hi to another student in the hallway.

As a senior, I volunteered at our local elementary school in a second grade classroom and I met a little girl who was diagnosed with Selective Mutism. She was only 7, but I couldn't help wondering if that was what I had. I talk freely now, because I worked really hard to overcome my social anxieties, but I have always wanted a name for what I struggled with in my ***** and teenage years, and I wonder if it was Selective Mutism.
3/10/2017 11:34:47 AM

Melinda
My daughter was diagnosed with this when she was four by a neurologist but the psychologist saw more Asperger's. Finally it was concluded she has both. Not one thing helps you have to do everything and more
We keep getting improved care but not one thing helps
1/31/2017 12:36:34 PM

Anon
It happened to my father several times after a panic attack. He was able to write down "can't talk".

The first time this happened, my mom and I got so scared that we called a suicide hotline asking for help. After all how could someone become mute due to depression. The volunteer (the idiot) demanded that I put my dad on the phone. When I explained (once again) that he couldn't talk, she said I was over-managing him.

I made him laugh and that allowed him to speak a word or two, but then he couldn't speak again.
What we did: Sleeping pill + anxiety pil.
In the morning, he was groggy but speaking.
1/26/2017 11:22:22 PM

Debra
I suffered with selective mutism as a young child and had no idea it was a thing. The condition was clearly brought on by trauma. After I began speaking I had a strong stammer and continue to have it. Most people don't know though because I work super hard to speak slowly and not stammer. But now I find myself not wanting to talk at all and sometimes unable to speak. It was a relief to read this post.
1/26/2017 1:55:18 PM

Jessica Lowry
My daughter does not have SM but she doesn't like to talk much and says she has to plan out everything she is going to say. I read everything I can find.
1/26/2017 11:31:00 AM

Anonymous
I had similar symptoms as a child and teen, however, now that I have conquered my social anxiety the selective mutism is no longer an issue. I found myself in an unhealthy relationship last year and not being able to speak during arguments was how I knew that my stress level and anxiety were way too high. Therapy helps.
1/19/2017 12:27:47 PM

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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