Finding a voice through technology

Alyssa Davilla, who lacks most verbal capability, uses an iPad app to communicate. One of the things she relies on the technology for is the ability to introduce people to her service dog, Elmo, pictured here.

Many of us consider our personal devices to be our lifelines to the rest of the world. They are our primary means of communication and connection. But for those without verbal capability, like 19-year-old Lucile Packard Children’s Hospital Stanford patient Alyssa Davilla, these technologies can assume transformative roles that allow for self-expression in ways that may not otherwise be possible.

Alyssa was born missing a large region of chromosome 5, a genetic defect that has caused neurological complications, including seizures. She has undergone frequent hospitalizations at Packard Children’s to treat aspiration pneumonia and other conditions. Alyssa also has autism-like symptoms that have left her with a very limited ability to speak. For most of her life, she has only been able to communicate a handful of feelings and phrases.

In the latest issue of Stanford Medicine magazine, which focuses on the theme of listening, Alyssa’s story was profiled for the unique way that she has learned to engage with those around her.

For years, Davilla’s parents, Monique Davilla and Matt Volkman, had few tools to communicate with her. She could say “food” and “water.” She could point to cards that said “Yes,” “No,” “Want more,” “All done” and “Want to play a game.” Beyond this tiny vocabulary, the family used a lot of guesswork.

But this all began to change last year thanks to an iPad application introduced to Alyssa by Ali Steers, a speech therapist based in Southern California. The app, called PODD with Compass, is designed to help people with limited verbal and reading capabilities communicate using illustrated icons in place of words.

Users tap words and pictures to create phrases that are spoken by a recorded device. In just over a year of using the app, Alyssa has become able to express herself in ways her family never knew was possible.

This winter, when Alyssa had a cold, she could say that her head ached; she’d never expressed pain before. For the first time, she’s showing a sense of humor, sometimes deliberately answering questions wrong, then waiting, smiling, to see if anyone realizes she’s being silly.

 

“More and more, we’re seeing her personality come out,” her mother says. “I thought she was shy. She’s not; she’s actually pretty social, but she didn’t have a way of communicating.”

When asked how the new technology’s capability makes her feel, Alyssa responds: “Good, awesome, smart.”

Read Alyssa’s full story in the Spring 2018 issue of Stanford Medicine magazine.