Washington Post: The voice we might never have heard

Nantucket Project-2Carly Fleischmann had a question for Sen. John Kerry (D-Mass.).

“Next year, I turn 18 and I am in your [district],” Fleischmann said to the senior senator during an October gathering hosted by the Nantucket Project, “How do I, someone with autism, pick the candidate that is right for me when a lot of the candidates don’t keep their word?”

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.

According to the National Institutes of Health (NIH), there is no cure for ASDs but there are ways to help minimize the symptoms and to maximize learning. These include therapy for speech, occupation, and physical movement. Schools can also provide individualized education tailored to the needs of the child.

But we need to understand the magnitude of the problem and focus our scientists and entrepreneurs on solutions.

Bob Wright said that he had convinced the government of South Korea to study the prevalence of ASDs in its population. Shockingly, it found that 2.64 percent of children 7 to 12 years of age—or one in 38—was affected. Most of the cases had been previously undiagnosed.

Bob and his wife Suzanne Wright founded Autism Speaks in 2005 after their grandchild was diagnosed with autism. At the Nantucket Project event, Bob said,“evidence suggests we are also underestimating autism prevalence in the U.S. due to current research methods that fail to capture cases in the general population, enrolled in typical classroom settings that are generally higher functioning.” The Wrights have made it their mission to increase awareness and catalyze cures.

Autism Speaks and the Center for Disease Control (CDC) recently entered into a collaboration to replicate the South Korean study case-finding methodology at test sites in the United States. The organization has also partnered with the Beijing Genomics Institute in China to sequence the genome of approximately 10,000 individuals from families living with autism in China and the U.S. They plan to make these data freely available to anyone who wants to research the disease. They have launched a Web site to bring together a community to “hack autism.”

The Nantucket Project event was billed as a gathering of about 400 “visionaries, thinkers, innovators, and performers.” Attendees included tech celebrities such as Google Chairman Eric Schmidt and Paypal co-founder Peter Thiel, actor Mark Ruffalo, political activist Grover Norquist and former lobbyist Jack Abramhoff, former Senator Bill Frist, and former treasury secretary Larry Summers.

In my talk on the autism panel, I challenged the attendees to marshal their resources to help solve these problems. Entrepreneurs and philanthropists can make the difference. I also hope that Kerry keeps his word to write a recommendation letter for Carly to gain admission to his alma mater: Yale.


Link to article on Washington Post’s website