Tuesday, April 2, 2019
13 Appian Way
Cambridge, MA 02138
When journalist and author Ron Suskind’s son Owen turned three, he, in Suskind’s words, “vanished.” He stopped speaking. He lost coordination. He would stare into space and wouldn’t make eye contact. “It doesn’t make sense,” Suskind wrote in The New York Times Magazine, “You don’t grow backwards.” Like many other parents around the world, Suskind learned Owen had Autism Spectrum Disorder (ASD).
Suskind will recount his family’s experiences with autism and identity at the Askwith Forums on Tuesday, April 2, World Autism Awareness Day. He has written powerfully about reaching and reconnecting with his son through Owen’s passion for Disney movies and characters — sidekicks in particular. His book, Life Animated: A Story of Sidekicks, Heroes, and Autism, was turned into an Academy Award–nominated documentary.
Suskind has used his own experience as the parent of a child with autism to form The Affinity Project (TAP) which leverages the passions and strengths of people with ASD to form connections and communities around the things they love. According to the Life Animated website, the Suskind family’s experience engaging with Owen as a child has sparked exciting new research. Neurologists are using fMRIs to study the mechanisms that govern how children with ASD find their deep interests, in order to help map abilities and inform therapy models.
TAP also launched an app called Sidekicks to allow neuro-diverse kids to communicate with each other, their parents, and their therapists through avatars. “It’s a new kind of supportive technology that really deals with at-need populations. It lifts them, helps them help themselves,” Suskind said in a forum in the Disability and Equity @ Work conference at HGSE.
Suskind has continued to look for ways to help parents and kids with ASD leverage their strengths. “You know, look, any kid [with ASD], it’s a question of a square peg and a round hole,” Suskind told Democracy Now!. “And for years, we’re saying, ‘Let’s shave off those edges.’ Well, the fact is, those edges are the best part. And so that’s the big change. Help them be larger versions of themselves, because they actually are quite self-directed. They know their strengths.”
These strengths are powerful levers, not just for people with ASD, but for everyone. TAP’s website points out that brain scans show that our brains “light up” when presented of images of the things we love. If educational objectives can be aligned with our passions, doors will open for all learners. However, the current model of education inhibits the opportunity for these kinds of connections as many experts focus on measuring deficits rather than promoting strengths.
“Difference doesn’t mean less,” Suskin observed, “The way neuroplasticity actually works is that for every area of deficit, the brain finds an equal and opposite strength… It’s not a question of if, but where.”