Often the first sign comes in preschool or kindergarten: Although a chatterbox at home, a child never utters a single word to the teacher or classmates. Ever.
Or a child gives everyone but his or her parents the silent treatment—babysitters, neighbors, the family doctor, even perplexed grandparents. Some kids will whisper, point, or nod. Others freeze and go blank.
Cajoling doesn’t work. Neither does encouraging, bribing, or pushing.
Why won’t they talk???
This situational silence has nothing to do with intelligence. These kids are smart. Their vocal cords work just fine. Nor are they trying to get anyone’s goat. “I want to talk,” one child explained. “But my voice shuts off.” “It’s like someone stole my voice,” another told her mom.
When the child feels comfortable, safe, and relaxed—usually at home—speaking isn’t a problem.
But elsewhere? Especially school? It’s as if they’re mute.
These kids become so overwhelmed with fear and dread in a given social situation, they can’t form words. It’s like your worst nightmare of performance anxiety, only magnified. And it’s real.
Selective mutism is a type of social anxiety disorder we’re all hearing about more—not necessarily because it’s on the rise but because awareness is. “Anxiety disorders of all kinds, especially in young children, have been overlooked. Now things are being picked up on that weren’t even less than half a generation ago,” says UCLA psychologist R. Lindsey Bergman, who specializes in the treatment of selective mutism, OCD, and related anxiety disorders at the UCLA Child Anxiety Resilience Education and Support (CARES) Center.
Still, selective mutism often goes undiagnosed, misdiagnosed, or untreated.
About 1 in 100 kids ages 4 to 7 is diagnosed with selective mutism. Although that’s a small number compared to, say, ADHD (11 percent) or autism (2 percent), cases often fly under the radar. In one study, Bergman found that every school had at least one child who fit the criteria, even if they weren’t being treated. It’s not like a unicorn in its rarity, she told me. “It’s out there.”
Girls are affected about twice as often as boys. (They also have more generalized social anxiety disorders.)
Parents are often surprised to first learn of the situation from a teacher, because the child comes home and talks about everything that happened. But it can slip under teachers’ notice too. In large classrooms, disruptive behaviors get more attention. If they do see that a well-behaved student doesn’t seem to talk to anyone, next steps can be unclear. Whose role is it to deal with: A speech-language therapist? The school psychologist? The child’s doctor?
A study reported in 2006 in Clinical Pediatrics found that more than two-thirds of kids with selective mutism were never diagnosed by their primary-care doctor or referred for treatment. Referrals for evaluation and treatment typically didn’t happen until four or more years after diagnosis. As awareness grows, of course, this may be changing.
Getting on a path to help can be tricky for several reasons:
It’s often written off as “just shyness.” “It’s an honest confusion,” Bergman says. “Selective mutism is on a continuum with shyness. Most kids with selective mutism are shy, though kids are shy without having selective mutism. Is it problem or personality? The question is how much it interferes with life, is distressing, and is causing problems.”
Anxiety can be an inborn trait. Often kids who develop selective mutism were timid, slow-to-warm-up babies and clingy toddlers who struggled with separation anxiety. Most continue to show other kinds of social phobia—they dislike being introduced, having their picture taken, or doing something new, like going into a bouncy house. Some are perfectionists, afraid to make a mistake, which could attract dreaded attention.
It’s sometimes misdiagnosed as autism. “Some kids won’t even make eye contact or play in the doctor’s office—the professional doesn’t believe the parent that the child behaves normally in other situations,” Bergman says. “Then you see a video from home, and they’re engaging and socially normal.”
It’s sometimes confused with defiance. Current thinking is that these kids don’t have oppositional defiance disorder. “Many are strong-willed kids,” Bergman says. “But the way I see it, their motivation for not speaking isn’t to be a pain in the neck. They feel so uncomfortable speaking that they dig their heels in to avoid the thing that makes them uncomfortable.”
It can start as, or overlap with, another communication disorder. “Many children learning another language go through a ‘silent period’ in which they’re ‘taking in’ the language around them but not yet speaking it. This is perfectly normal,” saysSuzanne Hungerford, a speech-language pathologist at SUNY-Plattsburgh and selective-mutism specialist for the American Speech-Language-Hearing Association. “It’s possible that some anxious children learning a second language may get ‘stuck’ in this silent period, leading to selective mutism.” As many as one-third of kids with selective mutism attend schools where a language new to them is spoken. She thinks one reason that school districts might be seeing an increase in the disorder is that they’re enrolling more English-language learners.
In other cases, selective mutism can exist alongside a speech disorder. Some new research suggests that abnormalities in the auditory nervous system prevent some kids from desensitizing to the sound of their own voice, for example.
It’s still mistakenly chalked up to parental trauma or abuse by some. “That totally makes no sense, because at home is where the kids are fine,” Bergman points out.
The sweet spot for treatment
The average age at diagnosis is 4 to 5 (when preschool or school begins). If you compare the numbers of kids with selective mutism in grades K to 2 with high school, it’s clear that many cases go away on their own, says Bergman, whose own daughter developed a mild case of not speaking during preschool that eventually disappeared—coincidentally after her mother had been working in this field.
What’s unknown is the toll that being paralyzed into silence takes on kids over time.
“Kids learn social skills as well as academic skills by using their voices—all kinds of important skills for getting along in the world, forming relationships with others, holding a job, and so on,” Hungerford says.
Kids with selective mutism are also vulnerable to bullying, teasing, and isolation. In extreme cases, kids become unable to eat or drink at school, use public bathrooms, open their mouth for the doctor, or even indicate that they’re in pain or need something.
The younger the child, the better the results from treatment, research has shown. Bergman says she won’t treat kids younger than around 30 months because they’re still just getting the hang of speech. But as a child grows into the school years, the more entrenched the habit becomes, with more social consequences.
“Four or 5 is the sweet spot for treatment,” she says.
Most professionals and parents prefer starting with behavior therapies in the youngest kids, but sometimes SSRI or SRI medications are used effectively for a short term, about 6 to 12 months, according to Bergman. There’s absolutely no evidence that diet remedies are helpful to selective mutism or other anxiety disorders, she told me.
The path to opening up
Help can begin with any professional who has knowledge about and experience with selective mutism. That’s typically a behavioral therapist, although some speech-language pathologists and developmental pediatricians also treat selective mutism, on their own or as a team.
“Treatment is standard evidence-based anxiety treatment,” Bergman says. Using age-appropriate cognitive-behavioral therapy, the problem behavior is broken down into easier steps. With repeated exposures, incremental progress is rewarded.
Very small steps. The therapist may start by helping kids make basic sounds, rather than words, or mouth words rather than say them aloud. The child might learn to talk to a person standing outside a door, or to talk toward them without actually looking at them.
“For example, a therapist might elicit nonverbal sounds—the sound of a motor, or an animal sound—from the child in the context of a game, with very low communicative pressure,” Hungerford says. Other low-demand approaches include turn-taking games and showing the child videos of him talking at home while in a place he usually associates with not talking, like school.
It’s important that some of the treatment takes place at school, because that’s where the mutism usually takes place. “Otherwise you get a child to talk to one middle-aged woman in an office, but that’s it,” Bergman says. Parents are usually given assignments to work on at home too.
Treatment typically takes 4 to 5 months, Bergman says. It can be slightly longer for older kids with entrenched social anxiety or other speech disorders.
More help at home
“This is definitely not just a leave-this-to-the-professionals thing,” Bergman says. Whether you’re seeing a lot of social anxiety or just want to avoid problems in a kid who seems normal, these strategies are useful:
Encourage socializing—especially with other kids. Playdates, playdates, playdates, say the experts. It’s especially important for young children to play with peers, not just hang out with grown-ups all the time.
Show them how to be social. Anxiety can run in families, so you might be reserved or socially avoidant yourself. Your child benefits enormously by seeing you make small talk with a restaurant server, say “Thank you” to the store clerk, and chat with neighbors.
Don’t be too overprotective of their discomfort. It’s not helpful to force a child to communicate with strangers, but you also want to avoid sparing them every possible social interaction. Without bullying, keep trying. “They’re not comfortable because they’re a bit afraid,” Bergman says. “It’s like when they’re not comfortable swimming, we don’t say ‘You don’t have to.’ We also don’t throw them in the deep end, but we do help them learn how.”
Check in with a new teacher. The technical definition of selective mutism calls for situational non-speaking lasting more than a month, not counting the first month of school. But don’t be shy about asking a new preschool or primary-school teacher, or a new daycare provider, how it’s going. Since a child with selective mutism may be talking to you but not anyone else, that’s info you want to know early.
Saying “Hello, new life, and thanks!”
Selective mutism is an especially gratifying disorder for therapists to treat because they can literally hear the difference they make. Parents routinely email them videos of their once-mute kids yammering away, even giving graduation speeches.
Hungerford remembers one girl whose very body language was sad and silent: hunched over, biting her hands. Then she saw her years later, at age 14. “The change was miraculous,” she says. “You could see the happiness in her face, and in her every movement and action—bigger gestures, the way she sat back in her chair.
“She became an intense social butterfly,” she adds, “like she was making up for lost time.”
Photos from top: Alex Barth/Flickr, Glen McCallum/Unsplash, Joseph Gonzalez/Unsplash, Rishabh Mathur/Flickr, delfi de la Rua/Unsplash, Leonid Mamchenkov/Flickr