By Beth Besen
Every parent knows the inexpressible and all-consuming love felt when embracing their newborns for the first time. It would seem there’d be nothing better, nothing deeper. But, then, miraculously, there’s more; the babies start to respond to us, they recognize our voices, they follow us with their eyes, they smile for the first time and smile back at us. Without words, we start to communicate our feelings.
Now imagine a different scenario. Your baby seems locked in his or her own world and doesn’t respond; doesn’t seem to hear let alone recognize your voice, and looks fixedly into space, inward, or everywhere but at your face and into your eyes. It’s heartbreaking, but it’s the reality experienced by many parents of children diagnosed with autism.
Autism, currently identified in one out of every 68 children,* is recognized as a spectrum disorder. This means that there’s a great range and diversity of disability. The hallmark of the disorder, however, is social impairment. And regardless of intellectual and other abilities, most of those diagnosed with Autistic Spectrum Disorder (ASD) will be mildly to severely impaired with regards to social skills development and will score so on any measurement thereof.
Enter five brilliant, thoughtful, energetic and motivated young men from Chappaqua and Armonk. Chirag Kumar, Daniel Shih and twin brothers Zachary and Nicky Eichenberger are 8th grade Bell students, and Tyler Harp is an 8th grade H.G. Crittenden student. Together, the boys are the Robobenders, and, with their innovative new App, What’s My Face, plus international recognition following their Semi-Finalist placement (one of only 20 teams chosen out of 527 entries) in the annual FIRST® LEGO® League (FLL®) Global Innovation competition, they are changing the ASD world for the better.
How the Team Got Started
“Friendship definitely came first,” laughs Chirag, while the others chime in with whole-hearted agreement. The boys are often in the same classes and, additionally, their families are all friends. According to Alexandre Eichenberger, who is not only the twins’ father, but also a self-described IBM “nerd” and mentor to the Robobender team, the boys came together three years ago. They were drawn to FLL®’s cooperative philosophy which, explains Alexandre, “is the equivalent of team sports applied to STEM study.”
While true that the boys met regularly that first year together, moms Christina Lee and Regina Eichenberger explain that the group really grew into something special a year later during Superstorm Sandy. The Eichenberger house was the only one with electricity and, says Regina, “food and laundry were very bonding.” There are smiles all around as parents and boys fondly remember the variety (it’s a multi-ethnic group, after all) and fun of their shared meals. Then, with an impish grin, Chirag adds, “the greatest advantage was so many days without school, and having plenty of time to brainstorm ideas and work them out.”
The Brainstorm that Led to Development of the App
The FLL® competition themes are specified annually, but, overall, the mandate is to develop “innovative solutions to real-world problems.” This year’s real-world problem topic: the future of learning. The boys came together last August to begin thinking about their project for the year, and brainstormed for about a month. They each have a specific area of specialized interest and talent. For Chirag, it’s research; for Tyler, content; for Zachary, outreach; for Nicky, programming and for Daniel, design. The final decision? That was inspired by Daniel’s brother, Martin, who was born severely autistic. The Chappaqua boys also had a classmate at Grafflin and Bell schools with ASD. Says Nicky, “Improving the way someone with autism learns” appealed to each of them. With that idea uniformly settled and agreed upon, the boys began their work in earnest.
Alexandre describes a disciplined schedule, “They met for the entire FLL season (Oct-April) for a couple of hours per week, and as the competition drew near, many weekends were spent on the project and the robot. In addition, Nicky and Zachary used the Xmas break to learn the Swift programming language to program an iPhone. They learned a lot of skills; teamwork to achieve a common goal, focus and dedication to reach this goal, robotic and mechanical skills to build a competitive robot (they won the robot performance in their first competition)and programming skills.”
It’s a Family Affair
Everyone participated in the project, kids and parents alike. The boys realized early on that music was going to be a key part of their invention. Says Regina, “Music stimulates the whole brain.” Nicky explains further, “Stimulating the whole brain creates a deeper understanding of the whole emotion. Video-modeling leads to raw memorization, but music goes further. You’d think it would just affect auditory processing but it actually evokes emotion.” Daniel and Christina attest to the fact that music had and continues to have a dramatic impact on Martin, changing his life, and therefore the entire family’s life too, for the better. The boys spoke and worked with Martin’s Chappaqua music therapist, Barbara Yahr, as well as the UK organization Music for Autism, as they developed and integrated music as an important component of their App.
With a Ph.D in Cognitive Psychology and current work in the area of decision-making, Chirag’s mom Poonam Arora, was also a valuable source for the boys, particularly in their research and development period. She worked with the team, helping them hone the critical neuroscience questions that led them to find and refine their answers. To this end, they exchanged emails and spoke with neuroscientists at Columbia and IBM. In fact, crafting emails to professionals and hearing back from them “de-alienated these famous researchers for us. It made them less imposing,” says Zachary on behalf of the team.
Even their eye-catching yellow polo shirts are an in-house team effort. Tyler designed the bold graphics, and Christina had the shirts stenciled; in fact, she shares that the shirts were still wet from the screening process as she packed them for travel to the FLL® Global Innovation Award Semi-Finalist competition in St. Louis. And, yes, every Robobender attended with at least one parent.
So, How Does the App Work?
One of the biggest surprises and a motivation for the boys’ work was the realization that autistic people can actually feel emotions very strongly, often even more strongly than do neurotypical people. With this in mind, Nicky explains that WHAT’S MY FACE was developed to help medium-to-higher functioning ASD school-aged children recognize and identify the four “most basic and necessary feelings: Happy, Sad, Angry, Scared.” It’s an easy-to-use Iphone App that connects the dots of music, gaming, social skills, computer interface and autism. At first, a player hears music associated with one of the four emotions. Slowly, with a deliberate delay built in so that the music has time to make the Associative Learning connection, a face takes form on screen and the emotion is clearly identified and spelled out. As the game progresses and points are awarded and accumulated, the player is slowly weaned off the music and better prepared to identify emotion in real life as well as in the game.
The boys and their families are still flying high after their return from the Semi-Finals in St. Louis. While they did not make it to the final three, they are proud of themselves and of their contribution. Regina reminds the boys that theirs was the only fully developed App, up and running at presentation time. Nicky remembers and shares that other participants came over to express interest in What’s My Face for people they know with ASD. The parents recognize what a great life and learning experience this year has been. In addition to all the technical work and hours of research and development, Alexandre speaks for them all when he says that the boys also learned, among many things, how to contact and present work to professionals in various fields, how to take constructive criticism and how to work truly collaboratively as a team.
And the best part of the whole experience from the boys’ points of view? Zachary puts it in perspective saying theirs is one step in the march of a million steps towards a cure for Autism. Chirag nods and suggests, “We’re 13 years-old, but we can still have an impact.” And Daniel adds, “We’re helping people like my brother so the world can be more meaningful.” Nicky points out they’re not actually finished because there are always ways to improve and update the App. And, while Tyler agrees with his teammates that “the best thing was being able to help and have an impact,” he then pauses for a brief moment, before adding one final thought, “oh, yeah, and hanging out with friends. That was the best too.”
*Estimate per the CDC’s Autism and Developmental Disabilities Monitoring Network
Familiar with the disappointments that can play all too frequent a part in the ASD world, Beth Besen was thrilled to meet the Robobenders, and share their story with Inside Chappaqua and Inside Armonk readers.