A 2014 graduate of Bryn Mawr College, Danica Cotov was diagnosed with selective mutism at age three. The anxiety disorder affects about 0.7 percent of young children, causing them to go mute in stressful situations, most typically in school. Cotov barely said a word in class from kindergarten through the 12th grade. In an interview with MIND Managing Editor Claudia Wallis, she discusses her years of anxious silence, the treatments that did and did not help, and how, with some key tools from a therapist, she ultimately broke free of her “silent prison.”*

>>Read about new research on selective mutism and programs that help kids with the disorder

*Editor's Note (5/12/16): Today Cotov is spreading the word about selective mutism and social anxiety and has, with her brother Matt Cotov, created a video to increase public awareness.

[An edited transcript of the interview follows.]

During the many years when you were selectively mute, with whom were you comfortable speaking?

I never had any problem speaking with family members, including siblings. At home, there was absolutely no indication that I had any sort of disorder or social anxiety. Although I also usually had one close friend that I was comfortable speaking with, it took a great deal of work on my mom’s part to cultivate that friendship. I joined a Girl Scout troop in kindergarten, and for the most part, I was also comfortable speaking with the girls in my troop, but that’s really the extent of speaking to peers.

Were you able to talk to therapists or teachers?

Although I was really never able to “talk” to therapists, I did try responding to teacher prompts as part of the treatment plan laid out by my therapists. Sadly, it was difficult to get teachers to cooperate by asking the necessary questions. Outside of the school environment, one treatment plan involved becoming comfortable responding to people in the public sphere (for example waving “bye” and saying, “thank you” in restaurants). This enabled me to become more comfortable speaking to strangers. I also had no problem selling Girl Scout cookies by going door to door with my mom. Although I became comfortable speaking to strangers in this way, I wasnever able to speak to people I actually had a “relationship” with (outside of family members and the occasional friend) such as soccer coaches, swimming coaches and dance teachers.

How did you participate in school?

In kindergarten I stood to the side—alone—during recess and simply watched everyone else play. During snack time I didn’t even want others to see me eating a snack. By the end of the year, I had one friend, and in subsequent elementary school years that grew to three or four friends. Ironically, these friends were always extremely outgoing and, I believe, sought my friendship out as somewhat of a challenge!

As the school years progressed, the treatment programs involved things like “talking buddies” but the school became concerned that other children were being too “burdened” by this and subsequently, my speaking in the school environment dwindled, even though I was getting more comfortable speaking to strangers outside of school. My communication was pretty much limited to nodding my head when it was necessary to respond. I did receive speech services for a short time in school and was able to "make sounds" and do the repetitive exercises with the school speech therapist but that never translated to speaking during other times of the school day.

Are you able to explain the anxiety that you felt?

Looking back, my anxiety was completely irrational. I lived in constant fear of being judged by my peers who I was certain would think negatively of me. I had a constant stream of thoughts and worries running through my head. I would spend all my time thinking of every possible situation that might occur—all of them negative, of course—trying to play out each one of them in my mind and what my responses would be. I never felt like I was able to “reset” or “let go.”

I've heard that it can be hard to start speaking after many years of being mute, in part because people would make such a big deal of it.

This was always my fear. I didn’t want anyone to hear my voice, partly because I didn’t want a fuss to be made and I didn’t want to hear, “I’m so proud of you. That’s so great!” That was my worst nightmare.

What kind of help or therapy did you receive, and was any of it effective?

I went to quite a few therapists when I was younger. Although I don’t remember a lot of the earlier therapists, I believe the main problem was that so few professionals had a working knowledge of selective mutism, and if they did, they certainly never understood its severity or how it specifically affected me. Finally, at the age of 12 or 13, my mom found someone who actually understood the disorder better than anyone else we had encountered, because her own child suffered from it: Dr. Elisa Shipon-Blum.

Although I never spoke in her presence, Dr. Shipon-Blum was instrumental in helping me begin to chip away at the prison I had built for myself. At each of our visits, she helped me “rank my scaries”—predict how difficult I thought a future task might be to complete and then reassess after doing the task, which was usually much easier than I had anticipated. She also helped me to be less fearful of having my voice heard by others and she played a big part in getting teachers onboard with asking me questions as part of my therapy. She encouraged me to make a habit of setting goals and was influential in increasing my level of comfort in speaking to strangers.

How did you finally overcome your fear of speaking?

In applying for college I knew I did not want to duplicate my high school experience. I knew I needed to push myself beyond my comfort zone and knew I needed to live away from home, no matter how difficult that would be. I chose to attend a prestigious, academically challenging college where speaking up in an intimate classroom setting was pretty much required in order to receive good grades. Although it started off shaky, I continued to push myself to do things that I knew would be extremely difficult and very uncomfortable. I wrote to each professor, explaining my history and asked—almost begged—them to call on me for responses. I chose to participate on a mission trip to Thailand the summer of my sophomore year, even though I knew no one in the group. I chose a study-abroad program in Australia in my junior year, knowing I would be away from home for almost five months. Although I wasn’t yet forcing myself to engage in “relationships” with others—that is, become friends—I was slowly broadening my comfort zone. It has always been easier for me to react when I felt forced to, rather than as the result of a promised reward, even though this is not the recommended route for achieving success.

How did your struggle with selective mutism influence your life today?

Selective mutism has enabled me to be more compassionate and has infused me with the desire to serve others. Right now I am serving as a missionary, traveling to 11 countries in 11 months as a participant in [The] World Race. In each country I am living with a group of five others in close community. I am learning how to be vulnerable with them and how to support them in relationships that I have never experienced growing up. We spend long days caring for people in remote villages who live in extreme poverty. We encourage them, teach them, pray with them and work alongside them in manual labor. I experience daily exhaustion but also daily peace, peace in finding my voice and sharing it with others. (I maintain a blog at DanicaCotov.TheWorldRace.org). My selective mutism has also gifted me with the ability to be introspective, enabling me to perceive things that others fail to notice. I have learned patience and am a master at “holding my tongue” when necessary, but now I am also learning how to share my voice when warranted.

Do you have any advice for those struggling with the disorder?

Be open to receiving help and to constantly push yourself to do the things you think you can’t. It is extremely important to find someone to be accountable to, with whom you can plan new goals and share your successes. Social anxiety affects so many individuals, and the sooner you can find the “right” treating professional the better. Don’t be afraid to find someone new if a particular therapist doesn't work out.

Take the time for objective self-analysis. Try to discover what produces the most anxiety and what is the most difficult and then try to strip the power from those things. Push yourself to do hard things! Then reflect on the process and try to see the irrationality of your fears. Although it is a "kid-friendly" childish term, we can all benefit from "rating our scaries."

Also, try to get involved in as many activities as possible and encourage the leaders of those activities to expect the best you can reasonably give. Too many teachers walked on eggshells around me and allowed me to remain in my anxiety. If you haven’t made participation in activities a habit in the past, it will only become more difficult with age and you may lose the desire for being with others altogether. Yes, being comfortable in solitude and practicing contemplation can be a joyful and rewarding experience but self-imposed loneliness can be a prison—a life sentence without any hope of parole.