Those with severe autism are often unable to speak or communicate in any meaningful way, which makes 17-year-old Carly Fleischmann such an anomaly. After she was diagnosed with nonverbal autism and oral motor apraxia at age 2, Carly’s parents were told she’d never be able to communicate or develop beyond the intellect of a 6-year-old. Instead, at age 10 she found her voice through typing and has since become a brilliant student, has recently co-authored Carly’s Voice: Breaking Through Autism with her father Arthur (president of Toronto ad agency John st.), and is an active autism awareness advocate. Now, to further help people understand the autism experience, john st. has created Carly’s Café, an interactive website that mimics the sensory overload and confusion common to those with the disorder.
Carly’s Café is based on the last chapter of the Fleischmann’s book, the only chapter written entirely by Carly. In it she uses a loud coffee shop as a metaphor to provide insight into what life feels like for the severely autistic. “What you see on the outside is generally not what they’re feeling on the inside,” says Arthur Fleischmann. “Carly wanted to have this platform to explain to people what it really feels like, all of the sensory overstimulation that’s going on around you–from smells to sounds to sight to touch –and how they impinge on her ability to filter and have a conversation. She takes in far more information than the average person; she can hear, see, feel, smell things that the rest of us don’t, but then that clouds her ability to comprehend.”
Using a first-person perspective, Carly’s Café users are invited to pan around the room using their mouse or directional keys, putting you inside the autistic experience. At first, you can freely move between focusing on Carly’s father or sister (both actors), a group of girls entering the café, the espresso bar, or other patrons. As time goes on, things seem more disoriented, disjointed, and cacophonous, and gradually keyboard controls cease to work and you’re at the mercy of the chaotic surroundings. The final shot focuses on Carly, who was shot on green screen because Fleischmann says she’s very hard to shoot. “She wants to try to take direction but her motor planning skills are terrible, so you can say take your right hand and put it on your left cheek and she might not be able to do that without a couple of tries.”
Produced by Toronto production company OPC, directed by Miles Jay, and with the interactive experience developed by Heung Lee at Ransom, Profit, the site meshes five concurrent films to give users control.
Fleischmann says the production crew was given free rein to interpret Carly’s experience, resulting in a filmically beautiful and suitably jarring experience. His only stipulation: “Be factually correct and truthful to Carly’s experience, because I can’t think of anything worse than being nonverbal and having someone create an experience that represents your life and having it so wrong that you feel taken advantage of.”
Fleischmann says his daughter is pleased with the result, though it still only provides a glimpse of what living with autism is like. “Carly says it’s good, it’s not perfect. She says what you’re getting there is not as overwhelming as it really is. She said it’s even worse: You’re not getting that full immersion of over-sensory processing. Like when you smell perfume and all of a sudden you can’t hear anything because the smell of the perfume is so loud. The senses cross, so smell blocks hearing, taste blocks touch, they get convoluted for her. I don’t know how we could have represented that!!”
Still, the fact that Fleischmann is aware of these shortcomings is what makes Carly’s story so special. That such insights are unlocked represents a breakthrough for those caring for people with autism. “I wish I knew some of the things she’s able to tell people now,” he says, “like how to cope with toilet training, loud noises and sleep and that sort of thing. She’s got all sorts of insights.”
Part of Carly’s mission in life, and motivation for both Carly’s Voice and Carly’s Café, is to use her rare gift of communication to change the perception of autism. With over 50,000 social media followers, and celeb fans including Temple Grandin, Ellen Degeneres, and Joe Mantegna, Carly uses what her dad calls her “wicked dry sense of humor and incredible compassion” to express what others can’t.
“Our goal is to have real awareness,” says Fleischmann. “I think everyone now has heard of autism, but they don’t really understand it. It still looks like this weird thing; it’s misinformed awareness. Carly’s Café is a beginning. Hopefully it intrigues people enough to learn more.”