Sam is 23 years old, and does not speak.
He has an anxiety disorder called selective mutism (SM). He understands language, but he is unable to speak to anyone other than his parents. A severe anxious feeling overtakes him when he tries. The disorder prevents him from nearly all social interaction. He has not had a friendship since he was 8, when a boy in his Island neighborhood stopped coming over.
Sam lives with his parents, and his social interaction is limited to them. He was dressed and groomed neatly when I met him and his parents in their home. He has a friendly way about him — he looked me in the eye and shook my hand, and smiled throughout the interview. He came across as the young man that he is. You would not immediately know that he suffers from such severe anxiety until you realize that he will not speak.
Sam cannot function in social settings outside of his home and church. He has been homeschooled since he was 4, and has been attending church his entire life.
Sam has a keen intellect, and spends most of his day on the computer at home. He’s been using the family computer since he was about 4, when he taught himself how to use it. At first, he played games, his mother said. She added, “But he seemed to be [more] interested in how the computer did that.”
When he was 8, he bought a computer program called “Stagecast Creator,” which uses visual language to teach programming. With Stagecast, he created his own version of “Wheel of Fortune,” a show he and his mother like to watch, and a game he calls the Marble Run, which drops marbles down a tube, and soon he was using a more sophisticated program to learn coding.
He learned to code in weeks, and how to instruct the computer to type words in certain circumstances, and to create databases and work with graphics. Sam has since moved up to an even more sophisticated computer coding program called Python. When Sam’s mother first learned of Python, she asked him if he was interested. He replied that “he was already working with it, and had written three programs.”
There is no shortage of creativity with Sam. He creates whole worlds using Fisher-Price Little People toys and Mr. Potato Head pieces. The worlds have hundreds of characters, each with his or her own name and voice. He has taken pictures of all the characters and put them with their names on his computer.
Sam is able to forget about his anxiety when he is creating. And computer programming seems to reduce his anxiety: Strict rules must be followed in programming, and from those rules flows the creation one has envisioned.
But notwithstanding his great intellect and creativity, he remains unable to talk outside his home.
It is hard for him to articulate why, or express what he is feeling. He may have a panic attack with a rapidly beating heart, or may become all tied up in knots inside when his anxiety is triggered.
There are aspects of obsessive-compulsive disorder to his illness: Everything must be done right. If for example, his father enters a room through one door, he must also exit through that door, rather than crossing behind Sam. And if his parents raise their cups to take a drink, then they must put them down in the same order.
The underlying symptom of SM, according to information on the disorder provided to his parents by a pediatric neurologist, is a pronounced fear of speaking in social settings such as school. It is not that folks with SM are shy. And it is not that they willingly choose not to speak. They simply are unable to speak.
The disorder prevents them from adapting well to social situations and from communicating effectively with others. Eye contact, nodding of the head, and other nonverbal communication may also be difficult. The fear of speaking prevents social interaction.
Sam met with the pediatric neurologist in 2009, when he was 15 years old. Everyone wanted to pursue further testing, but the insurance would not cover the charges, and they could not afford to pay.
When the sun is shining, Sam and his mother go for walks in the neighborhood. He is afraid of animals, and cannot go past the house with the dog. It is hard, Sam whispers to his mother in our interview, not to have friends, and he is often depressed.
Sam did not talk to me during our nearly 1½ -hour interview. But he did smile a lot as we discussed his creations, or for that matter his anxiety, and he seemed interested in his story being reported. When I asked a question, he often whispered an answer to his mother. He enjoyed showing me his computer programs and sharing, through his parents, the worlds he has created.
Sam has made vast improvements. He can shake hands now and make eye contact with his fellow parishioners at church. Still, he wonders what people think of him.
One senses a wonderful individual both on and beneath the surface. He can function in most settings — he just doesn’t talk.