When Jennifer Lopez gets her well-known goosies during an episode of World of Dance, we do too. This is exactly what happened after she heard Naia, a member of the Crazy 8’s junior division dance team and a child with a disorder called selective mutism, utter a single word.
Hearing Naia say “hi,” led JLo to break down in tears. That’s because when a child with selective mutism speaks, it’s not just beautiful; the moment is monumental. In Naia’s case, whispering the two-letter greeting was captured on video for the world to see.
Naia’s story resonated with our family. Our close friends have a child who was diagnosed with selective mutism, and last year one of my children had a classmate with the same diagnosis. Over the years, we have learned about the many challenges a child with selective mutism faces in their daily lives.
Selective mutism is not a well-known disorder, so oftentimes children who aren’t speaking are dismissed as being shy. Sometimes they are incorrectly assumed to be disrespectful, intellectually disabled, or defiant. Teachers and parents might believe their child has a different diagnosis, such as autism. As a result, it can take years for a child to be accurately diagnosed and get the help they need.
1. Selective mutism is a spectrum.
According to Dr. Elisa Shiphom-Blum, selective mutism is “a complex childhood anxiety disorder characterized by a child’s inability to speak and communicate effectively in social settings.” Kids are sometimes able to communicate in settings in which they feel safe and relaxed.
The disorder is a spectrum. Some children are able to communicate with those they are closest to, such as relatives or friends, while some have extremely limited communication. Some children will nod or gesture but not speak, while others might speak only in a whisper.
2. Selective mutism looks different in different settings.
In a social setting such as school, a child with selective mutism might appear frozen and expressionless, unable to communicate when asked a question or engaging in play with peers. The inability to speak is particularly challenging because the child may not communicate their basic needs, such as needing a pass to go to the restroom or requesting assistance to open their lunchbox to eat.
The Selective Mutism Association explains, “Although there may be no logical reason for fear, the feelings that the child with SM experiences are just as real as if an actual threat or danger were present.” Essentially, a child with selective mutism in a social situation experiences the feelings similar to someone with stage fright.
3. Children are most often diagnosed with selective mutism between 3 and 8 years old.
According to the Smart Center, selective mutism is usually diagnosed when the child is between three and eight-years-old. The reason? This is the timeframe when a child starts school, and symptoms are more apparent.
Children with selective mutism tend to have a predisposition to anxiety. They often show signs of the disorder as early as infancy, including extreme separation anxiety, frequent tantrums and crying, an inability to be flexible, sleep issues, and extreme shyness. When such struggles continue past their developmentally appropriate time-frame, parents might suspect something else is going on.
4. Getting diagnosed with selective mutism can be tricky.
Getting an accurate selective mutism diagnosis can be tricky because less than 1% of children have the disorder and not every doctor is educated on it. Parents should start by taking their child to the pediatrician, which is usually necessary to then be referred to a qualified specialist.
Sitsofe Luh Nutsukpui, mother of a child with selective mutism, took her then five-year-old child to a pediatric psychologist for testing after observing them speak at home but not in the preschool setting. The evaluation entailed parent reporting, questionnaires, and observations.
She shares that it can be difficult to get an accurate diagnosis and subsequent help, so parents have to be relentless in their pursuit to assist their child. She told Scary Mommy that parents must follow their instincts.
5. There are treatment options for selective mutism.
Once a child is diagnosed with selective mutism, there are treatment options. The go-to is cognitive behavioral therapy where the child is encouraged to practice “brave talking.” This is a gradual process in which the child learns to communicate in social settings.
Treatment isn’t just for the child. Additionally, parents can be trained in helping coach their children, as well as communicate the child’s needs to the school. When necessary, anxiety medication may be a helpful option when behavioral therapy isn’t enough.
6. If a child has selective mutism, they may qualify for a 504 or IEP.
A child who is diagnosed with selective mutism may qualify for a 504 or Individualized Education Plan (IEP) through their public school. Both an IEP and 504 are legal documents that lay out the help the child is entitled to due to his or her documented disability.
A few accommodations that have helped children with selective mutism include utilizing a tablet to communicate via pre-recorded audio and a typing program. Spending time with the school social worker to focus on communication skills and anxiety management may also be helpful. There are many other options, all of which should be considered when tailoring a plan to the severity of the child’s selective mutism.
7. Selective mutism can be challenging.
Nutsukpui shares that selective mutism is challenging, both physically and mentally. “Speaking is a major aspect of life, so to go through a whole school day and not say a word until you get home is unimaginable.” This is especially difficult if the child has a need that requires help, one that they cannot communicate, such as feeling ill, getting hurt, or needing to use the restroom.
She goes on to say that kids like her child “sometimes get overlooked or taken advantage of” and are generally misunderstood. As a parent, she has to constantly check in with her child and teacher, advocate for her child’s needs, and continue to encourage her child to practice the aforementioned “brave talking.”
Ultimately, all parents want their children to be happy and successful. In the case of a child with selective mutism, the path to success starts with a diagnosis, then finding the appropriate help, and steadfastly pursuing treatment. The journey can be both tumultuous and rewarding.
And when the child with selective mutism does speak? Truly no sweeter word has ever been spoken.
This information is not intended to be medical advice. Please consult your child’s physician with medical concerns.