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 Rockville 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 school psychologist for Montgomery County Public Schools, 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.
Q&A with Dr. Lindsay Scharfstein
Psychologist and founder of the Rockville Therapy Center
What are the most common misconceptions you see around SM?
- That it’s nonverbal autism
- That it’s caused by trauma
- That it’s purely oppositional behavior
- That it’s just shyness. Kids with SM are not shy; they’re actually very, very chatty. It’s often a dual personality where at home they’re lively and talkative and may have difficulty waiting their turn to speak, but when the anxiety hits, they could be in the same classroom or the same school with friends for years, they desperately want to speak and aren’t able to. SM is really an anxiety disorder, not a personality style. These are children who want to talk. They are not choosing not to talk, so it’s important that we understand that it’s the anxiety driving the difficulty speaking in certain places with certain people.
How can you tell the difference between a child who’s “just shy” and one who has SM?
When thinking about shyness, we’re thinking about taking maybe 15 to 30 minutes to warm up to an activity or to chat with others. There may be some shyness, even at home, as well as other settings. For SM, we diagnose it only if it’s been at least 30 days — or if it’s the first year of school, six months — of consistent difficulty speaking in situations where it’s expected.
Shyness is more of a slowness to warm up and a personality style. SM gets in the way of their ability to share their ideas, to make friends, to have their learning assessed at school, and it’s pervasive and unrelenting.
What should parents do if they suspect their child might have SM?
- Talk to your child’s teacher(s) and/or counselors about your child
- Look for a provider who specializes in behavioral treatment for SM
- Check out the Selective Mutism Association for free videos, resources, trainings and events for families who want to learn more
What are some things a parent should avoid doing?
- Don’t put your child on the spot to speak. They benefit from the opportunity to rehearse and warm up before speaking.
- Don’t have too many conversations about talking. Only bring up talking if you really need to, no more than once a day. Instead of identifying what they’re not doing, praise what they are doing, such as maintaining eye contact or joining other kids to play. There are many ways to be brave that don’t necessarily involve speaking.
- Don’t punish non-speaking behaviors. Don’t withhold something because your child isn’t speaking or use speaking as a strategy to get something. They can’t control it and that’s just going to make it much more anxiety-provoking. We don’t want to punish non-speaking behaviors in the same way we wouldn’t punish someone who can’t see without their glasses.
- Don’t speak for your child; let them have their own voice. When an adult “rescues” them from having to speak, it negatively reinforces the behavior for non-speaking.
How can teachers support kids with SM in the classroom?
- Keep talking to kids with SM even if they seem unresponsive. You can’t tell how children with SM are feeling just based on how they look. They often go home and share stories of how much they enjoy their teachers and classmates during the school day. Keep spreading social breadcrumbs about your pets, your family, your vacation, so that when they are ready and comfortable, they have something to talk to you about.
- Ask multiple-choice questions rather than open-ended ones. It’s much easier to answer a multiple-choice question like, “Is the answer four, five or something else?” rather than a question like “What’s the answer?”
- Give a lot of wait time. Research shows at least five to 15 seconds after you ask a question is needed for kids to work up courage and think of an answer. Wait a full 15 seconds or even longer for an answer.
What treatment do you provide for SM?
There’s three components of the treatment I offer rooted in PCIT-SM:
- Caregiver training sessions so parents can learn the techniques and become their child’s advocate when helping their child speak in the community.
- School collaboration and intervention so schools are aware of what SM looks like and know how best to support these students.
- Individual therapy, helping children speak to me, so that I can help them speak to everybody else when they have something to say. That may look like in-office sessions and doing exposures where we walk around the building and talk to brand new people who are going to their doctor’s appointments, overcome the fear of talking to others to break those rigid rules and speaking boundaries so they can learn to talk when there’s something to say.
Is treatment and therapy always effective?
They may still have anxiety; they may still need to live what’s called an “exposure lifestyle” where they are finding opportunities in day-to-day life to use their voice and to make sure that they’re getting enough practice to keep those skills up. But often it’s a very, very treatable condition with the right support and intervention.
I have students who I saw when they were four or five who are graduating from college. I even have a student who is pursuing their career in voice acting. They’ve grown tremendously in their ability to succeed. SM just really doesn’t reflect who these children are; they are so smart, funny, creative, intelligent, and when we remove the barrier and help them overcome the anxiety, they end up developing more resilience than others because of their journey.
Resources
- Selective Mutism Association offers a variety of resources to educate about SM.
- SMA’s Toolkit for Caregivers
- Selective Mutism University: a virtual learning website for parents, other caregivers, educators and therapists
- “Lola’s Words Disappeared” by Elaheh Bos: a picture book that explores anxiety reduction and management techniques specific to SM, designed for grades 1-2
- Books by Dr. Eli Lebowitz
