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.