Kerry stumbled and then responded, “For people who have been in office, you measure their record, and I am happy to have mine measured.” It was a good answer, but Kerry was visibly caught off guard. After all, Carly can’t talk, doesn’t demonstrate common social skills, and was fumbling around in her seat at the corner of the stage where our panel was discussing autism and technology.
Carly has oral motor apraxia, a condition common in people with autism that prevents them from speaking, which people often interpret as a lack of intelligence. Her sensory and impulse controls are impaired, so she can’t make her body cooperate to display the types of reactions that other children do. A decade ago, a child with such symptoms might have been confined to a special home for the mentally challenged and left to wither in solitude. Society would have assumed that she was a lost cause. Yet, thanks her Internet-connected iPad with the Proloquo2Go app and Dell laptop with goQ Software’s WordQ and speakQ, Carly is able to learn what is going in the world and communicate her thoughts. She wrote she dreams of going to college at Harvard, UCLA, or Yale and wants to become a journalist. She is conceiving of technologies such as a “prosthetic voice”—a speaker that goes in the mouth and plays back the words typed on a computer. “I would then have people look at me and not my computer or my device when I am talking,” she said via her computer.
Carly did not type these questions and answers while she was on stage, they were prewritten. Her assistant cut and pasted them into SpeakQ as she pointed. ABC producer Alan Goldberg told me by e-mail that he had spent many days with Carly while filming a segment for the news documentary 20/20. He says “she writes brilliantly and without assistance, providing invaluable insight about life inside the autism bubble.”
Carly’s mother, Tammy Starr, said to me at the event that, when Carly learned that Kerry was going to be in Nantucket to do an interview with MSNBC host Chris Matthews, she tweeted that she wanted the senator to do a question-and-answer session with her too. She had her followers echo her words repeatedly until she got Kerry’s attention. He changed his schedule to be there for the panel hosted by NPR On Point’s Tom Ashbrook. I was also on this panel along with Former NBC Universal President Bob Wright and Autism Speaks Chief Digital Marketing Officer Marc Sirkin.
Carly demonstrates what is possible—most importantly, that people with autism have unique capabilities, and that technology is a way to unlock them.
Autism is an umbrella term for a group of disorders that exist on a spectrum and that are formally referred to as Autism Spectrum Disorders (ASDs). People with one of these disorders aren’t necessarily intellectually impaired; instead they tend to have problems with social interaction and communication.