The Inspiration behind TAP
The Affinity Project began with a story — 52 of them, in fact, housed in the mind of a seven-year-old boy whose story, in turn, would radically transform how we see the way our brains work to make us who we are. It drew together a team of researchers, thought leaders, neurologists and technology experts who were eager to create ways of helping people be more engaged with the world around them. And, for the people who heard his story, it made them think about what it is to be a truly successful person.
The boy’s father, Pulitzer Prize-winning author Ron Suskind, had always been drawn to stories, himself — and as a journalist he was used to looking for the underlying truths in them: what divides us, what draws us together. As Senior National Affairs Reporter for the Wall Street Journal, it was his job to chase down leads, follow the thread of the story, to become expert on a subject quickly and deliver the finished product.
And then his son, Owen, was diagnosed with autism at the age of three. He slipped into silence. But as much as Owen changed, his family did as well: they tried to see the world through Owen’s eyes, to find the pathway back to him. Ron’s work began to center around marginalized people who had no voice. He found them everywhere, in the land of the left behind. They found him. He found himself asking them what they thought was most important, what made them feel safe and connected in their worlds. The answer surprised him with its simplicity: the things they loved. Whatever they were — whatever specific people, pastimes or places — the things they loved made them feel like who they really were.
When Owen was seven, his parents realized that he had silently memorized 52 animated Disney movies — word by word, scene by scene. If they quoted a line to him, he could throw back the next one. They realized they could communicate to Owen through the Disney dialogues. Over the next several years the family played and replayed scenes from his favorite movies in the basement, and Owen gradually recovered his speech. The power of Owen’s love for those 52 stories had become the pathway toward communication, and a way of engaging with and understanding the world.
When a book was published about the Suskinds’ journey, people started talking about how passions are pathways into engaging with the world for all of us, not just those on the autism spectrum. They started talking about how, now more than ever, the digital world has the potential to connect us — not just to the subjects and passions that make us feel like who we are, but to each other, as well. But trying to navigate an increasingly dizzying digital landscape without a map made that impossible. So they started The Affinity Project, a community of thinkers in technology, behavioral science, art, and culture, to find a way forward.
First we started with what we know best: the special community of people on the autism spectrum and their loved ones. Scientists rarely seem to agree about much, but there’s one notion they hold in common: to know autism is to understand the human brain. For people on the autism spectrum, who struggle with the social cues and sense-integration that people who are neurotypical take for granted, other skills such as pattern-recognition and memory acuity tend to become predominant. Of course everyone is different, but one thing we observed from people on the autism spectrum is that they tend to share a powerful, self-directed interest that we have chosen to call Affinity.
For Owen, it was the Disney films; for someone else on the spectrum, it might be dinosaurs, or train schedules, or sports statistics. Have you ever heard kids with Asperger’s referred to as “Little Professors”? These people’s all-encompassing, all-consuming knowledge of their affinities is their pathway to engaging with the world in a way that can seem intense or arcane to others.
At the same time, they call it a spectrum for a reason: we are all on it. The intensity of affinity in people with autism spectrum disorder (ASD) might be more intense, but for all of us, we are what we love. We are what connects our brains to our hearts and then to the outside world. Brain scans suggest that, when presented with images of things that we love, our brains literally light up. That is the power of affinity in all of us. And we wanted to find a way to facilitate that power through a digital experience that could eventually let people of all stripes connect to their affinities and connect to others who shared them.
We started with Sidekicks! — a phone application that was developed to support communication between people on the autism spectrum who could share their affinities by viewing videos, side by side with a parent or therapist. We thought that having the ability to share materials in this way — and then talk about what the video made them feel, or think about, or how it might resonate in their own lives — could leverage technology to help unlock the power of affinity. Studies at Harvard, Massachusetts General Hospital, and MIT are validating what we suspected when we developed Sidekicks!: namely, that technology really can help work as a therapeutic and educational tool for people on the autism spectrum, especially through its ability to persuade people with autism to engage and communicate.
But what we also learned from the ASDers is that they did not need us to fix them. What they wanted was for us to help them help themselves by providing a place to share affinities. As one ASDer said, “If I could just find other people who love what I love, and share what we love in real time I’ll have the life I’ve always wanted.” We took this and expanded Sidekicks! to include a “clubhouse” — a piece of digital real estate where they could share their affinities, have fun with friends, and be their own authentic selves.
We thought hard — harder than others have — about how these digital visitors could share their content with others, but preserve their privacy. We created a digital landscape called Bongo, where those clubhouses can live. It’s a sort of virtual town where there could be a house for Bruce Springsteen fans, a Disney movie club, and other houses created and curated by people with all sorts of affinities — for film clips, for music, for photos. Each house is an expression of the owner’s face to the world. But instead of being about affiliations, these houses are about affinities. Because what is most interesting isn’t necessarily where you live or what your job might be; what is interesting is the pathway to your individual passion. And the chance to share it.
What we love doesn’t just draw us. It drives us to become who we are, and to connect to others. For ASDers in particular, the self-directed interests that are affinity help filter out, or “gate” the noise and the overstimulation of everyday interaction, stimuli that they are particularly sensitive to. We believe that technologies like Sidekicks! and Bongo can help filter the noise of everyday life and provide a place to share what really matters.
But don’t we all want that, really? Wherever we are on the spectrum, as the digital landscape gets denser and louder, it is harder for all of us to use it for what we really want: to connect to the things that we love, and to share them.
Social media as it currently behaves doesn’t celebrate what we love; it amplifies that we hate. All too often it exists as an echo chamber of outrage, a place we go to when we crave what Justin Rosenstein — inventor of Facebook’s “like” button — describes as “the bright dings of pseudo-pleasure.” It isn’t real. It’s loud. It’s lonely.
We want to upend that.
We want to give people anywhere on the spectrum the space to share who they are by showing what they love.
We know it isn’t easy. It’s easier to filter our drives and desires into the surface stuff we’ve been conditioned to care about. How many “friends” you have. How many toys. How many distractions.
But when you discover — or rediscover — something that draws you, or challenges you, or makes you fall in love with it, where do you go to share that?
Through the Affinity Project, we want to help people use their passions as a pathway for change. Whether it’s as small as one person’s Bongo clubhouse or as big as a map of the brain, we want to be incubators of great ideas.
We think we know how to do this.