Breanna was a typical child at home. She shared with me in an interview that she would “play, run, sing, dance,” but in social situations, Breanna was “turned off” and unable to speak. Her parents had her tested, and she did not have autism. That’s when a psychologist diagnosed Breanna with Selective Mutism, an anxiety disorder that’s rare, effecting about .03%-1% of the population, most often diagnosed in children.
Today, Breanna is a 24-year-old psychology major and full-time paraprofessional to children with disabilities. Her Selective Mutism is still a significant part of her life. Having an anxiety disorder that few understand isn’t easy and can effect almost every situation Breanna, and others who have the same diagnosis, face.
What Is Selective Mutism?
Selective Mutism is an anxiety disorder in which a child, like Breanna, appears to be a typical child in familiar settings, such as their home. (Adults can also be diagnosed.) However, when they enter more social situations, such as school, that’s usually when parents (and teachers) begin to notice the symptoms. Selective Mutism is sometimes dismissed as shyness or opposition, but it is neither. Sometimes a child with undiagnosed Selective Mutism is told they will grow out of their “shyness” or apparent refusal to participate.
Symptoms of Selective Mutism
There are two main symptoms of Selective Mutism. The first is that the person “speaks freely at home and with family but is nonverbal due to anxiety in public settings or around strangers.” The second is that the person is “paralyzed with fear or shuts down completely when unable to communicate.” There are also additional symptoms that someone with Selective Mutism might have. These include “pointing, nodding, writing” instead of sharing answers verbally, having a “trusted individual” speak on their behalf, “struggle to make eye contact when uncomfortable,” and “present as behaviorally inhibited.”
How Selective Mutism Is Diagnosed
Sometimes the journey to a diagnosis can be difficult. According to the NCBI, “Beyond information from parents and teachers, health professionals, such as audiologists, psychiatrists, psychologists, and speech/language pathologists, may be involved in the multidimensional assessment.” Susan told me that her son went from preschool to third grade before he was properly diagnosed. She said they tried everything they could to help their son, even offering rewards if he would talk. It’s only when she jumped into online research that she began to figure out why her son was unable to speak.
How Selective Mutism Is Treated
Once a patient is properly diagnosed, typical treatment options include play therapy, behavioral therapy, family therapy, and medication to address the anxiety disorder. Susan reports that therapy alone wasn’t enough to help her child, so they added medication to his treatment plan which helped significantly. Breanna, on the other hand, shares that she didn’t participate in therapy or take medication. Additionally, a child may qualify for a 504 plan in public school to address their needs.
How Selective Mutism Impacts Daily Life
Selective Mutism sometimes “co-occurs with other forms of anxiety, particularly social anxiety.” Susan, a mother of a middle schooler with Selective Mutism, shared with me that her son’s disorder concerned her for his well-being and safety. She offered the example of when he had to use the restroom at school, or if he needed to “report an injury or illness.” Breanna told me that she tries to be herself, and that has been her “greatest challenge” in her journey. Furthermore, she has to contemplate what she’s going to say or ask for aloud, practice her words, and deal with feeling like a social outcast. She has shared her diagnosis with people before, but fears she’ll be judged and misunderstood. She adds, “We live in an interdependent world that is based on communication. Having the ability to speak, but a hard time doing so, is like being trapped within yourself.”
What Selective Mutism Is Not
Susan shared with me that she’s learned from her son’s journey that Selective Mutism is not a child exercising “defiance,” nor are they “attention seeking.” The assumption is that the child is manipulative or is purposefully misbehaving, that when they don’t speak, they are being disrespectful. Breanna told me that having Selective Mutism is not a person merely being “shy or quiet.” She adds that Selective Mutism “is not a choice.” She is physically unable to speak at times, and this doesn’t mean she’s “rude or stuck up.” She also shared something important, that just because she has Selective Mutism, it doesn’t mean she doesn’t understand what the person is saying to her, nor does she lack intelligence.
Susan reports that she and her family are “happy, proud, and at peace that our son is finding and using his voice,” as well as “advocating for himself.” It was difficult to find qualified professionals to truly understood the disorder and provided the appropriate help for her son. Breanna said that her self-determination, in acknowledging that she “needed” to use her voice, helped her. She shares that “nothing helped me more than pushing myself.”
Breanna has also used her diagnosis to pen a powerful poem about her experience. With her permission to share, she wrote, “My name is Breanna I said in my head/But they looked at me strangely and walked away instead/So, I sit here all alone, just staring all about/I don’t know why, but my words just won’t come out.” Though Breanna and Susan’s son still face adversity, they have also grown to live more courageously.