Gregarious. Imaginative. Involved. That’s how Dr. Lisa Kovac described her daughter Noelle’s personality as a child. Young Noelle would put on plays at home and was talkative with her sisters, so Kovac was stunned when that same child wouldn’t say a word at school.
Noelle wasn’t shy; she had selective mutism (SM) — an anxiety disorder in which a person otherwise capable of speech becomes unable to speak in certain social situations. Noelle had no trouble speaking around her immediate family, but outside of the house was uncharted territory. SM typically first occurs between the ages of 3 and 6 and is diagnosed when the child enters school.
A Different Kid in School
Kovac, a school psychologist in Orlando, Florida, first decided to seek help when Noelle’s preschool teacher informed her that Noelle wasn’t speaking in school—a play-based learning environment.
“Her teacher came to me and described my daughter and her play,” Kovac recalls. “She said, ‘I played with Noelle in the kitchen area today… I asked her to hand me the spoon, and she handed me the spoon. I asked her to hand me the knife, and she handed me the knife.’ That was how I found out that there was a problem.”
Kovac says it was then that she realized her creative, bright daughter was a different kid at school. Noelle’s teacher hadn’t said that Noelle was lacking cognitively, but in hearing about her daughter’s play, Kovac knew that Noelle was capable of much more than she was letting on in the classroom.
“It was a dissonance of knowing the type of play that she was demonstrating at home versus what her teacher saw at school and what she was doing at school,” Kovac says.
Kovac had read an article about selective mutism, but she had “no idea” what was going on at the time, which prompted her to seek treatment to help Noelle. In doing so, Kovac faced obstacles, such as a lack of professionals specializing in SM and other parents insisting that Noelle would eventually “grow out of it.”
The truth is that children with SM might not grow out of it. In fact, symptoms of SM get worse the longer they go untreated because the child becomes accustomed to not speaking, according to Dr. Lindsay Scharfstein, a clinical psychologist in Maryland who specializes in SM and social phobia.
“Educate yourself about selective mutism. Believe in yourself and your instincts,” Kovac urges. “When someone tells you they may grow out of it, be sure to advocate for your child. Educate yourself on evidence-based treatments.”
Finding Their Voice
One effective treatment for SM is parent-child interaction therapy for selective mutism (PCIT-SM), an approach that aims to improve verbal communication. In this approach, since the child is comfortable speaking to a parent, the next step is for them to speak to the parent while the therapist is in the room. Next, the goal is to speak to the therapist with the parent in the room, and finally, to speak to the therapist with the parent no longer in the room, Scharfstein says.
This process is repeated and gradually built upon to have the child feel comfortable enough to speak to others.
Another treatment option is integrated behavior therapy, which involves 20 weekly sessions over six months that focus on gradual exposure to verbal communication. Katelyn Reed, a psychologist and president of the Selective Mutism Association, says exposure therapy involves doing the action that causes the child some discomfort so they learn that it’s uncomfortable but not unmanageable.
Some people with SM benefit from medication in addition to behavioral therapy—the most well-researched being selective serotonin reuptake inhibitors, such as Prozac or Zoloft, to alleviate anxiety, according to Reed, but not all pediatricians are comfortable prescribing SSRIs to a child.
Jonathan Kohlmeier, a board member of SMA, was diagnosed with SM when he was 5 years old and received professional treatment.
“The easiest way to explain it is just very systematically and very deliberately conquering those fears and those things that make a kid anxious,” Kohlmeier says. “It sounds almost too simplistic that the way to get over your fears is just to do them.”
In early elementary school, Kohlmeier wouldn’t speak, sit in the classroom, drink water, use the bathroom or participate in class. Some of his teachers and peers thought he was stubborn or refusing to speak on purpose.
“A lot of people, even school professionals, thought I was being very oppositional and wanted to give strict punishments for me not speaking or not participating,” Kohlmeier says. “I sometimes wouldn’t even nonverbally communicate, so [people] thought I was being defiant and not wanting to communicate with them. That was very much a misunderstanding. It was more so I was paralyzed by anxiety.”
Navigating the Classroom and Beyond
Melissa Ruiz, a Maryland public school psychologist, says parents of a child with SM should educate their child’s teacher that SM isn’t a choice. It is extremely difficult for children with SM to speak in some situations.
Another misconception is that people with SM are unable to speak, and that because of their nonverbalism, they aren’t as smart as their peers.
“A lot of people who see kids with SM might think that they’re impaired in many other ways that they aren’t; it’s just the anxiety that’s causing them to be that way,” Kohlmeier says.
Experts are unsure which children with SM will go on to be comfortable at school or in public without treatment and which might continue being nonverbal. Reed works with some teenagers and young adults who have “severe and very persistent” symptoms of SM; others “self-treat” within a couple years.
As the parent of a child with SM, Kovac is glad that there are many more available resources and specialists for SM than there were when her daughter was a child. Noelle is 19 now and earning straight As in her college classes.
Kohlmeier is the author of a coming-of-age memoir about his childhood with SM, titled “Learning to Play the Game: My Journey Through Silence.”
Though both still experience anxiety, they have found their voices.
