“What begins at this point is a 20-year battle—embrace, struggle, dodge-and-fake—with affinity,” said Suskind at a recent NIMH lecture, “Autism’s Powerful Affinities: Prison or Pathway?” The talk was in observance of National Autism Awareness Month. It’s a personal narrative he tells in his new book, Life, Animated: A Story of Sidekicks, Heroes and Autism, and it’s a story that has recently piqued the interest of some scientists.
A year into Owen’s silence, his one passion was watching Disney animated movies, an activity he loved before the disease’s onset. “He’s up all night, he’s irrational, he’s miserable, he’s silent,” recounted Suskind. “But somehow, sitting watching these movies—The Little Mermaid, his chosen movie that year—he just seemed to be settled, comfortable.”
Some doctors warned Suskind against encouraging a single affinity—in this case, Disney movies—to the exclusion of all else. But for the Suskind family, it was their one way forward and, for years, their only way to communicate with Owen. Suskind said he once tried to limit Owen’s dose of Disney; he even locked up the TV. “But it’s like we cut off his supply line,” Suskind said. “He was divorced from his nourishment.”
When Owen was 6, he repeatedly uttered a phrase from The Little Mermaid. But the family’s hopes were dashed when doctors described it as echolalia, an imitation. Owen didn’t comprehend what he was saying. Then one day, Ron Suskind picked up a puppet of Iago, the evil sidekick from Aladdin, and imitated Iago’s voice. Owen answered as the villain Jafar. This was their first conversation. Suskind said Owen didn’t understand the dialogue at that time, but he related to the exaggerated expressions and inflections.
Suskind advises parents of autistic children to look for opportunities to make some sort of connection. “Respect the affinity,” he said. “Find out what it is and simply share that joy instead of trying to fix them every day…I feel deeply how important it is to see things as they really are, not as we are.”
Photos: Ernie Branson
As Owen memorized lines from more than 20 Disney movies based on sound alone, his parents and older brother tried to help him contextualize the dialogue with acting, jumping, twirling and dancing. Ultimately, Owen learned language and social interaction skills through repeatedly watching Disney films and role-playing the characters with his family.
Disney characters became a channel through which Owen began to express his own emotions. “They’ll speak through their affinity if you can hear the language,” said Suskind. Owen most identified with sidekicks, saying they helped the hero fulfill his destiny. In Owen’s sketchpad, he drew his brother Walt as the hero and wrote, “I’m the protector of sidekicks” and “No sidekick gets left behind.”
Suskind spoke of Owen’s laser-like focus on his affinity and how that affinity unlocked what was deep within, helping his brain to navigate when traditional pathways got blocked. “Affinity leads to recognition and measurement of underlying capability that may be otherwise invisible,” Suskind said. “The brain is more nimble than we ever imagined.”
Some scientists agree. Today, neuroscientists at three universities—Yale, MIT and Cambridge (U.K.)—are collaborating on a study of affinity therapy in young autistic children. They’ll observe which parts of the brain are firing when kids are engaged with their favorite interests and what role this may play in the intellectual and social development of autistic children.
Suskind advises parents of autistic children to look for opportunities to make some sort of connection. “Respect the affinity,” he said. “Find out what it is and simply share that joy instead of trying to fix them every day…Once we respected his affinity and dove in and said, ‘Let’s make this joyous,’ even if we feel bizarre dancing in front of the screen, things occurred that surprised us…I feel deeply how important it is to see things as they really are, not as we are.”
Today, Owen is attending school in Cape Cod. When he first arrived, he started a Disney Club. For the first time, Owen has friends and they’re using their shared affinity for Disney to find comfort and build social engagement. “They’re context-blind in the world in which we walk; here they’re context-deep,” Suskind said.
A member of Disney Club, Owen’s girlfriend Emily told Owen’s dad she most identifies with Dumbo, whose ears made him different. “That’s why I’m a Dumbo person,” she said. “Over time, he learned what I have learned. The thing that made him different was his greatest strength.”