Selective mutism is an anxiety disorder, often mistaken for shyness, that robs a child of the ability to speak in certain social situations. Here, learn about the diagnosis and treatment of selective mutism and how it will affect your child's life.
Diagnosis: Selective Mutism
Selective mutism is a childhood anxiety disorder that affects a child's ability to speak outside the home. The major marker of the disorder is the contrast between how a child engages with family members at home and others outside the home. "Many kids with SM are described as 'chatterboxes' when they’re in their comfort zone, but outside the home they typically shut down and aren't able to speak," says Melissa Ortega, PsyD, a behavior therapist with Manhattan's Child Mind Institute who specializes in children's attention disorders.
Each child with SM is different in terms of which situations cause her anxiety. "School seems to be the one that's most stressful for kids," Dr. Ortega says. "That's when it starts really interfering with their life." SM is usually diagnosed between ages 3-7, when a child is first put in a situation—such as a classroom setting—in which speech is expected. It's more common in girls than boys by a ratio of about 2 to 1. Dr. Ortega says she expects this difference stems from the fact that girls are expected to be verbal and socially engaged at an earlier age, so the disorder is caught earlier.
A red flag for the disorder, before the child enters school, is a consistent failure to speak to extended relatives, neighbors, or others outside the home who the child sees fairly regularly. Another indicator might be seen on playdates if the child isn't able to separate from her parent or engage verbally with the other children.
Selective mutism is often mistaken for shyness but is much different. "[Kids with SM] don't look visibly anxious, so it can be hard for people to tell the difference," Dr. Ortega says. "A child who is shy will warm up eventually. A kid with SM never warms up. She can go an entire year in preschool and never say a word."
There is no direct cause of selective mutism, but as an anxiety disorder it is thought to be at least partly genetic. "Some of our research has shown that usually one or both parents have some sort of anxiety," Dr. Ortega says. "A lot of times we’ll sit down with parents and they'll say 'Oh I have trouble in social settings,' or 'I avoid speaking at parties.'" That said, the disorder is also influenced by environmental factors, as it tends to worsen when the behavior of not speaking is reinforced.
What It Means for Your Child
Eleven-year-old Ashley Johnson of Cambria Heights, Queens, suffers from both cerebral palsy and selective mutism. Ashley goes to school at the United Cerebral Palsy Association of Nassau, where teachers first noticed that she had trouble speaking and didn't use the bathroom at all during the day. According to Dr. Ortega, children with SM can be so anxious that they often don't eat or go to the bathroom in public, even in school, because they fear criticism or being the center of attention. "It's a touchy thing, because people who don't fully understand selective mutism think it's her choice," says Michael Johnson, Ashley's dad. "It's a big difference. It's not her choice not to talk or interact, she just can't do it. It's like when you're having a scary dream and the whole time you're looking for help, you're yelling and yelling, but nobody hears you."
A child's social life is most affected by SM, but it can also affect academics. "They're not able to advocate for themselves in the classroom. If they don’t understand something, they're unable to ask for clarification," Dr. Ortega explains. "And if they miss the core foundations, they can get behind." In extreme cases, SM can endanger a child's safety—for example, if she ever gets lost, she may not be able to ask for help.
What It Means for Your Family
Parents play a big role in diagnosing SM. While the disorder is often caught when a child starts school, it may be overlooked by teachers who don't understand it or aren't communicative enough with parents. "A lot of times the school doesn't alert the parent and parents don't think to ask," Dr. Ortega says, noting that sometimes an entire year of school goes by before a child is diagnosed—precious time that could be spent in treatment. "As a parent, you should ask, 'Is my child participating? Able to follow directions? Is she able to tell you what her needs are? Does she ask for the bathroom?'"
Once diagnosed, selective mutism is usually treated with behavioral therapy sessions at least once a week where the child practices verbalizing and interacting with others. Parents and family members are key to the treatment process, Dr. Ortega says, because they need to be conscious of not reinforcing the SM behaviors. For example, if the child is pointing to something she wants, don't say, "Let me get that for you," because then the child isn't expected to verbalize her needs. Instead, say, "If you need help, you can ask." Parents should also act as role models by verbalizing their own needs, which can be as simple as saying "I need some help with this," or "May I please have some water?"
Behavior therapy for SM usually entails exposure-based therapy, where the therapist puts the child in a situation that causes anxiety and then helps her through it. These situations might include speaking to new people, initiating interactions, responding to questions, and playing a game with another child. "We label it 'brave talking,' and we pair it with reinforcement so they get excited by a sense of accomplishment," Dr. Ortega says. Children might receive stickers or other small awards when they 'brave talk.'
"A lot of what we do is training parents so they can continue to practice in some way every single day. [These kids] need constant rehearsal and practicing," Dr. Ortega says. For example, if someone asks your child "How are you?", the parent shouldn't jump in and say "She's fine." Instead, the parent should encourage the child to answer for herself.
The amount and length of treatment needed depends on each individual. "We go with the pace of the child. We don't want to overwhelm them," Dr. Ortega says. Some kids open up all of a sudden, while others chip away at their anxiety.
Because SM is an anxiety disorder, there's a chance that kids might also be affected by similar disorders such as social phobia or a more generalized anxiety disorder, though every child is different. "It doesn’t mean they'll definitely have something else down the road, but it's a possibility," Dr. Ortega says.
Overall, selective mutism is very treatable, and the prognosis is better the earlier a child starts treatment. "A lot of these kids will return to within normal peer interaction after treatment," Dr. Ortega says. "The sooner you seek treatment, the sooner you can resolve the anxiety and help them be themselves in all situations." And if anxieties pop up down the road, kids can attend a "booster session" that offers a heavy dose of behavioral therapy packed into a day or a week. "It has proven to be extremely helpful, like getting a big boost of antibiotics," Dr. Ortega says.
Check out this video, in which Dr. Ortega speaks about the effectiveness of intensive treatment for children with SM:
While medication is not usually necessary, Prozac or Zoloft is sometimes prescribed to older children who haven't shown much progress after behavioral therapy. "I'd say about 25 percent of our kids are on medication," Dr. Ortega says. "They can be extremely helpful. But it's only when we see they’re not progressing at a rate we would expect." Per the American Academy of Child and Adolescent Psychiatry, there are no specific medicines designated for SM, though SSRIs are the treatment of choice for childhood anxiety (and no one SSRI has proven to be consistently better for treating SM).
Check out these links for more information about selective mutism:
American Academy of Child and Adolescent Psychiatry
American Psychiatric Association
American Psychological Association
Anxiety and Depression Association of America
Children's Center for OCD and Anxiety
Selective Mutism Group of the Childhood Anxiety Network
Selective Mutism Online
The Child Anxiety Network
The Silence Within
Columbia University Medical Center
Division of Child and Adolescent Psychiatry
Harkness Pavillion, 180 Ft. Washington Ave., Manhattan
Provides information for parents and clinical services for children suffering from anxiety disorders
Child Mind Institute
445 Park Ave., Manhattan
Offers the Brave Buddies intensive group behavioral treatment program designed to help children ages 4-8 with selective mutism speak in school and other public places.
NYU Child Study Center
NYC campus: 1 Park Ave., 7th Floor, Manhattan
Offers Camp Courage three-day intensive treatment summer program for children who have SM and have some experience with behavior therapy.
How to contribute to research on selective mutism and lend a helping hand to the cause:
NYU Child Study Center
Selective Mutism Foundation
Suggested reading on selective mutism:
The Anxiety Cure for Kids by Elizabeth DuPont Spencer, Robert L. DuPont, and Caroline M. DuPont (Wiley; $14.95)
Helping Your Child with Selective Mutism by Angela McHolm, Ph.D., Charles Cunningham, Ph.D., and Melanie Vanier (New Harbinger Publications; $15; selectivemutism.org)
Helping Your Socially Vulnerable Child: What to Do When Your Child Is Shy, Socially Anxious, Withdrawn, or Bullied by Andrew R. Eisen and Linda B. Engler (New Harbinger Publications; $15.95)