Disrupting Autism with Courage and Technology

Carly Fleischmann was nervous. Carly was scheduled to speak on a panel at The Nantucket Project, a high profile event with many powerful and influential people in attendance. Carly was diagnosed with severe autism at age two and has an oral motor condition that prevents her from speaking. And yet, Carly has defied the odds. 

Carly Fleischmann at The Nantucket Project. Photo by Meghan Brosnan.

While doctors predicted that Carly would never intellectually develop beyond the abilities of a young child, Carly, who is now 17 years old, has an IQ of 130 and communicates by typing on a laptop or an iPad. Carly has ambitions to attend college and become a journalist, maybe even the host of her own TV show. Nonetheless, Carly was nervous about her speaking engagement, and she went to Facebook to seek advice.

Here’s what she wrote:

This weekend I’m going to be on a panel with some really big names typing in front of a good size audience and I’m a little nervous. My teacher said to picture them all in their underwear but they’re all old and that is gross. Now if brad pit comes than we are in business as my teacher says. lol So I am asking you for advice on how to get over being nervous. Do you have any tips or ideas that help you?

Carly’s Facebook friends weighed in with 454 comments, offering not only advice, but such an outpouring of support that Carly’s nervousness vanished, and was replaced by courage, not to mention audacity. On the morning of Carly’s scheduled appearance, she tweeted this challenge to Senator John Kerry, who was also scheduled to speak at the event:

@autismspeaks #TNP Good morning good morning good morning! Today is the day I make history as the youngest speaker ever to speak at The Nantucket project. However I am throwing out a challenge for @JohnKerry who will be speaking right after me. I am saving you a seat on stage and I CHALLENGE YOU TO TAKE IT. I have some questions for you in my head that I think the world would like to hear the answers to. @JohnKerry You and me one on one what do you say?

2,500 retweets later, Senator Kerry had agreed to take the stage with Carly, and he did so in one of the most moving and inspiring moments of The Nantucket Project, a festival of ideas that took place last weekend on Nantucket, Massachusetts. 

Watch Carly participate on this panel along with moderator Tom Ashbrook, Autism Speak’s Bob Wright, Marc Sirkin, her aide Howard Dalal and Senator Kerry in the video here:

What’s the Big Idea?

Autism is a spectrum of disorders that neuroscientist Dr. Gerald Fischbach defines as “impairments in social cognition, understanding and in restricted interests and repetitive behaviors.”

As Bob Wright, co-founder of Autism Speaks, points out in the video above, autism is much more prevalent today, and it is now considered the fastest-growing serious developmental disability in the U.S. 1 in 110 children are diagnosed with autism today, which is double the number it was a decade ago and 10 times the number it was a generation ago.

It is unclear whether this rise is due to increased awareness, a broadening of the criteria for diagnosis or a true change in incidence. There is no “cure” for autism (which is not a single disorder) and scientists are still debating whether autism is triggered by genes or the environment or whether a toxic environment triggers certain genes in people susceptible to this condition. The theory that vaccines cause autism has been widely discredited. 

While autism science has made great strides in recent years, scientists describe the search for a cure as “a marathon, not a sprint.” Indeed, the goal today is to improve the quality of life of people who experience autistic symptomology. To achieve this goal, we need to change the perception of the disorder, and that is one of the things that Autism Speaks, an umbrella organization, has set out to do. 

What’s the Significance?

Twenty years ago, we didn’t think people with severe autism could function in society, and so we tended to put them away in homes. It turns out that the barrier for autistic people is not about intelligence but the ability to communicate. Technology has opened that door today and helped reframe our perception. Just listen to Carly Fleischmann and you hear a voice that was trapped but is now playing hardball with a U.S. Senator. And that’s not all. 

Carly would like Senator Kerry to write her a letter of recommendation for Yale. That’s her latest Twitter campaign, and I imagine Kerry will be compelled to oblige her. 

To learn more about The Nantucket Project and how to attend the 2013 event visit nantucketproject.com.