I first heard the term selective mutism in 2015 at age 29. In the groggy haze after waking up and not yet completely awake, I mindlessly scrolled through my Twitter feed while lying in bed. My eye caught a New York Times headline that made me stop and open the link. “Coaxing Children with Selective Mutism to Find Their Voices.” I had never heard the term selective mutism before, but somehow recognized it as familiar. I only had to read the first few sentences before I recognized my childhood self.
Completely alert now, my mind raced over all of the time I spent as a child and young adult wondering what was wrong with me. At best, I frustrated myself and at worst, I hated myself. I sat at the edge of my bed with the urge to share my discovery with someone, anyone. With nowhere to direct my emotions, I cried instead. Not from sadness, but with a sense of relief that the puzzle pieces finally fit together. I felt a mix of excitement, relief, and validation knowing that nothing was fundamentally wrong with me as a person, but that this was something with a name that happened to me.
From that New York Times article and further research, I learned about selective mutism. Selective mutism is a childhood social anxiety disorder characterized by a child’s inability to speak and communicate in select social settings, such as school. As I read more about selective mutism, the pieces started to fall into place. So many aspects of the disorder applied or still apply to me. I was a perfectionist afraid to make mistakes, embarrassed to eat in front of others so I often tried to hide in a bathroom during lunch periods, had/have anxiety in crowds, and was/am especially sensitive to sounds, light, and touch (Sensory Processing Disorder). As a child, I hated having to wear socks or underwear. They felt so uncomfortable on my skin that I would hide them in the house so my mother couldn’t force me to wear them. Thankfully, I’ve grown out of that phase, but still prefer loose clothing and low sound volumes.
Many kids with selective mutism come from multilingual families or have been exposed to another language during their formative language development — my mother is German and I spent time with family in Germany as a child. It’s also common for kids with selective mutism to suffer from depression as adults, as I do. And although I never received an OCD diagnosis, I wouldn’t be surprised if I had a mild case. I’d often do things like repeatedly pour beads out of their container and put them back according to color and shape. Every school photo until later in high school shows me with a frozen, blank facial expression, a common characteristic of selective mutism and a perfect visual expression of the fear that gripped me during any social situation, no matter how minor.
There wasn’t much information available about selective mutism during my childhood, but my mother was my lifeline and helped me through it as best as she could. She suffered from the same disorder as a girl and encouraged me to push my boundaries, but with a gentle touch. She may not have known at the time, but what she was practicing with me was behavioral therapy, a recommended treatment for selective mutism and other mental health disorders. She guided me to accept risks, including entering the elementary school spelling bee which, looking back, was a huge feat.
I also had teachers, two in particular, who helped me through it. One of my teachers had the idea to keep a running journal since I couldn’t speak in class. He wrote in it then handed it off to me during class. I wrote back to him and brought it back. To this day, I feel more comfortable and my thoughts flow much easier when I write rather than when I speak.
Over the years, the severity of the disorder slowly and gradually lessened, but I remained a quiet and anxious child and young adult who avoided interaction and didn’t stand up for herself. As much as I tried to self-isolate in order to protect myself from situations that triggered anxiety, they were unavoidable. I sunk deeper and deeper into myself, internalizing the trauma of everyday life. I’m still not sure if I completely understand all the ways selective mutism has shaped who I am and why I do the things I do.
My lowest point happened in middle school. In some ways I was the typical adolescent, insecure and uncomfortable in my own skin. I wore big, baggy t-shirts to cover my body and stayed on the periphery to avoid drawing any attention to myself. I just wanted to be invisible then go home, even though I couldn’t leave my problems behind at school. One day at home, I was sitting in the basement at the computer, a place where I spent a lot of time alone. Loneliness and social anxiety left me in a distressing limbo at all times. Being alone was familiar and comfortable, but damaging and sometimes dangerous. Loneliness turned into self-hate. Everyone else had the ability to speak and be social. What was wrong with me that I couldn’t do such a simple, human thing? I’ve never hated anything or anyone as much as I hated myself in that moment. The thoughts swirling in my head were relentless. Clearly those games of Spider Solitaire I was playing over and over didn’t help to numb my mind. I knew there was a boxcutter in the desk drawer so I directed all my anger and self-hate at my arm, cutting and stabbing, desperate to relieve some of what I was feeling inside. Luckily, I couldn’t do serious damage with the dull blade and after I calmed down a bit, I went upstairs to bed.
That deep feeling of loneliness, of a hole within me, has never completely left. Depression is a common consequence of having a childhood social anxiety disorder. Being able to attach a name to what I experienced as a child helped me to legitimize not only that experience, but also my ongoing experience with depression. I can finally accept that even though my depression is no longer severe, it does affect my quality of life and will not go away on its own. It’s not a sign of weakness to admit this; it’s simply what has to be done in order to move forward.
Looking back, I was lucky to grow up in a relatively friendly and resourced school environment and to have a mother who was understanding, supportive, and did all she could to help me through each day. By encouraging me to push my boundaries, she helped me to be brave and know that I am capable of more than I believed.
Despite all the pain caused by selective mutism, I am strangely grateful for it. For better or worse, it shaped who I am as a person. As I get older, I learn to appreciate myself more and more, even if I need to remind myself daily and play mental tricks to fight negative self-talk. Without selective mutism, I don’t know if I would be as compassionate and sensitive to others’ feelings as I am. I may not be as observant or be able to examine a situation through anyone’s lens but my own.
Now that I can name my social anxiety disorder, it no longer makes sense to put the blame and anger squarely on my own shoulders. I can’t automatically undo all the negative feelings I internalized, but going forward, I know I’m not defective — I’m actually a survivor. There are other kids going through the same thing who, hopefully, are able to name their selective mutism much earlier than age 29 and receive the benefits of increased clinical knowledge. Naming my selective mutism made me realize something that keeps me going whenever I’m having a hard time — it’s not my fault, I am much stronger than I thought, and ultimately, I’ll be okay.