Last week Boston hosted HUBweek, a special series of over 120 forums, workshops, and other events celebrating innovation and the future. Organized by The Boston Globe, Harvard University, MIT, and Massachusetts General Hospital, 130 organizations collaborated to host expert panels discussing everything from art and architecture to sustainability and public policy.
HUBweek hosted “Synaptic Gap: 21st Century Brain Science Meets Mental Health Policy,” a day-long forum focused on the future of innovation in mental health treatments and policy. The keynote presentation was delivered by Ron Suskind, Pulitzer-prize winning author of the book “Life, Animated” (now a major motion picture).
Suskind’s talk began with the emotional story of his son Owen, who was diagnosed with autism spectrum disorder (ASD) at age 3 after his mother Cornelia noticed that he was no longer speaking. “Our first move was to demonize the doctor,” explained Suskind, noting that this is a common response from parents in similar situations.
When Owen was diagnosed in the mid-1990s, autism was less understood than it is today, both within the medical community as well as by the public. Doctors told Suskind that this condition might erase Owen’s capacity to have normal human feelings and experiences. Part of what this meant, Suskind was told, is that his son might never speak again. Suskind described how he and his wife slowly came to accept their son’s condition, but never accepted that their son was incapable of feeling normal human emotions or understanding speech, and they never stopped trying to converse with him.
Their breakthrough moment occurred during one of many nights spent watching Disney movies, Owen’s favorite pastime. As he was watching The Little Mermaid, Owen exclaimed “juicervose!” Ron and his wife Cornelia at first thought he was only asking for juice, but soon realized he had repeated back a line from a song: “It won’t cost you much, just your voice.” Ron then thought to try and talk to his son using a puppet of the character Iago from Aladdin, and for the first time in years, he was able to converse with Owen. “How does it feel to be you?” he asked, in his best impression of Gilbert Gottfried. “Not good,” Owen replied, “because I don’t have any friends.”
The Suskinds began staging nightly performances using puppets and costumes to enable Owen to communicate his thoughts and feelings with the family. Over time, Ron realized that his son’s love for Disney and animated films was quite common among children with ASD. Owen started a Disney club where he and his friends talked about the ways in which they related to particular characters and bonded over their mutual interests. Observing this, Ron reached out to the inventors of SIRI to create Sidekicks, a smartphone app that allows parents and caregivers to communicate with children and young adults with ASD by displaying a character on the user’s phone that speaks whatever is input on the other end. Like a puppet, the app allows parents to speak with their children through characters, but with benefits of a smartphone app— mobility, ease of use, and general practicality.
Since Owen’s diagnosis, ASD has become better understood by the public as well as the medical community, however, people with ASD have not had a tool like Sidekicks that can provide them with cues and a familiar context to help them navigate day-to-day situations. In his closing remarks, Suskind hinted at where the app may be headed: a fully autonomous program which people with ASD could use independently of a caregiver, wherever they go, when they find themselves in need of a helping hand.
Sam was born and raised in Villanova, PA and attended the University of Pennsylvania. He majored in diplomatic history and spent a lot of his time writing for the Pennsylvania Punch Bowl, a student-run satire magazine. Since graduating in May of 2016, he has helped to establish Tiger Hills Coffee Company with a friend, a company whose mission is to export premium Indian coffee to the United States. He enjoys humor writing, dogs, craft beer, and very loud music.
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