Neurodiversity

GOAL Neurodiversity will help ordinary people understand what it’s like to be autistic. Autism affects millions of individuals, but the “neurotypical” struggle to comprehend it. Although autism is diagnosed through behavior, I am convinced it has a sensory basis. Autistic people see, hear, touch and smell the world differently, and these differences affect every facet of their lives.

Here is a draft of the conceptual model I am using to describe autistic experience.

WHAT I’M CREATING Neurodiversity will be a multimedia installation and website that interprets the experience of autism. Like the portal in Being John Malkovich, people will enter the mind of an autistic person to see daily life from their perspective. The installation will be contained within a hemispheric video dome that incorporates immersive imagery, sound and elements of smell, touch and body awareness. I will offer the installation to museums, galleries, festivals and schools, and the website will contain video, links and supporting materials.

WHY IT’S IMPORTANT My installation should help people understand some of the mysterious ways autistic people behave. Why are autistic people socially aversive, even non-verbal? What inspires arm-flapping, screaming and other activities? Why do they focus on tiny details while ignoring entertainment? After experiencing Neurodiversity, you may realize there are circumstances where you would do the same.

HOW I’M PREPARING I have been speaking with autistic people and their loved ones, reading first-hand accounts, and reviewing scientific literature. Dr. Temple Grandin has generously granted an interview, and her books have been an invaluable guide. I’m synthesizing the data I gather into a model of the autistic person’s perceptual world. Since autism represents a variety of conditions called Autism Spectrum Disorder, my model needs to operate on a continuum, and Neurodiversity will present a range of experiences at varying intensities.

Here’s an article on Neurodiversity I wrote for Parentables.

WHO ELSE IS HELPING Dr. Thomas Armstrong, author of the book Neurodiversity, is an advisor, as are clinical psychiatrist Dr. Amy Mednick and Dr. Koan Jeffrey Baysa, a medical researcher and curator.

PURPOSE OF PROJECT  The word autism implies that people with ASD are self-involved, but autistic people who write tell a different story. They describe hyperacuity to sensation, a condition which leads to an overwhelming attention to details in their environment. Amanda Baggs created a video, In My Language, that shows how phenomena like running water captivate her. And Tito Mukhopadhyay, who moved from India to Austin, Texas, has written several books that describe the stories he hears from mirrors, fans and elevators.

With Neurodiversity I am working to understand the range of human experience. I am also trying to understand the specifics of autism. While it is often treated through behavioral intervention, I have found that autistic behavior can derive from attempts to compensate for perceptual instability. Take arm flapping, a behavior which occurs when an autistic person loses proprioception, or their awareness of body in space. It may seem disruptive, but for autistic subjects it’s steadying, because they regain spatial awareness. As a side note, my kundalini yoga instructor leads us in arm flapping for the same reason—she claims it “balances the hemispheres and orients the body in space.”

In cases like arm flapping, behavioral intervention may comfort neurotypical caregivers, but it may not address the core issue for the “autistic” person: a terrifying loss of body. Autism may be diagnosed through its attendant psychological and behavioral disorders, but it may stem from a more fundamental perceptual condition that starts in infancy.

Autism is a subject where art, science and philosophy can meaningfully interact. Science provides analytic tools for developing a clinical model, and neurology can illuminate where autistic processing differs from neurotypical. Because autism touches on human subjectivity, it also requires philosophic rigor, as it is tempting to apply scientific principles beyond their proven range. First-person accounts of autism should be weighted heavily against clinical observation, and I am using these as the primary source for my artwork.

HISTORY OF PROJECT My interest in autism began when I met Temple Grandin. I was a TV programming executive at Rainbow Media, and we were interested in a doing a series on animal perception. Temple is one of the world’s leading authorities on how animals perceive, a topic that fascinates me, and I was also keen to cultivate the world’s first autistic television host.

My personal interest in animal perception came from my background in philosophy, but, after conversations with Temple, my interest shifted to autism. She claimed that there are similarities between certain forms of mammalian perception and that of people with ASD, and it was these similarities that enabled her stunning insights into the way cows, dogs and other species behave.

Before I read Animals in Translation, I considered autism as a purely psychological condition. Why are autistic people seemingly self-involved? In the 1950s psychologists like Bruno Bettelheim promoted a now discredited theory that “refrigerator mothers” were the cause of autism in children. More recent explanations propose that ASD involves impairment in one’s theory of mind, in other words, the ability to read emotions and intentions, or in the mirror neurons that form the physiological basis of empathy.

The story I got from Temple led me in a different direction. She explained how the world terrified her when she was young because she lacked sensory integration. Associations that develop organically in the neurotypical (what may be called “normal”) don’t happen in people on the autism spectrum. Autistic people also have extraordinary sensitivities to phenomena that others don’t notice. Florescent lights, the contrast between letters and paper, abrupt sounds or movements: all these things can send the “autistic” subject into a sensory impasse.

I found other first person accounts of autism. Donna Williams explains the experience of being monochannel in her book Autism: An Inside-Out Approach. Monochannel perception occurs when a person’s brain can only attend to one sensory modality at a time. You can see, and you can hear, but you can’t see and hear at the same time. Monochannel makes for confusion, especially in social situations which require ongoing calibration. A friendly touch can be a shock if you don’t see it coming, which then leads to a cascades of awkwardness and withdrawal.

Why create an artwork about autism? Art expresses the human spirit. Even as technology-driven science explains the spiritual away, the human spirit remains the primary force that integrates our consciousness into a self – and it is the self, a divine fiction, that we experience directly, with all the joys and sorrows of everyday life. ASD can be tragic, but I don’t think the clinical “disease-based” understanding of autism creates sympathy. It may also miss key facets of the autistic experience that could be used for diagnosis, intervention and socialization.

Art integrates: at its best, art reinforces our identity as beings with a place in society and the cosmos. Unlike science or philosophy, it creates a matrix of experience, and I can use it to synthesize different strands of explanation, to test them for consistency. Ideally I can give a direct experience of the object of study. Without downplaying the pain associated with the condition, my artwork may help us look beyond our current conceptions of ASD. Perhaps it could even help us, meaning me and other neurotypical readers, to appreciate autism, as many activists are now asking us to do.