Share this project


Share this project

Neurodiversity will help ordinary "neurotypical" people understand what it's like to be autistic.
Neurodiversity will help ordinary "neurotypical" people understand what it's like to be autistic.
49 backers pledged $5,015 to help bring this project to life.

Recent updates

A scientific experiment

I hope everyone has had a wonderful summer.  I've been immersing myself in the clinical literature, reading scientific studies on the sensory world and neurological basis of autism.  One challenge has been organizing the data, particularly when an item correlates to multiple factors.  My solution has been the Autism Chart which let's me correlate a trait across several domains or disciplines.

You'll see several columns in the chart, along with a page of references and notes. (To navigate look at the tabs on the bottom.) Of prime importance to the art installation is the one labelled Phenomenological. That's a mouthful, but it's a precise term from philosophy that means "the appearance of things." The items in this column will appear in the installation - this column describes how things look to some people on the autism spectrum.

Other columns are labelled Neurological, Functional, Psychological and Behavioral. These allow me to validate the phenomena scientifically, as I can cross-reference the elements of the installation to clinical studies that reference structures and activities in the brain. I'll also use them to generate events and narratives within the installation. As one of your fellow donors, Bill Roberts, always says, people understand things best through stories.

For the past week I've been studying how we become aware of others.  In science and philosophy this characteristic is called intersubjectivity, and it underpins our ability to form relationships with each other.  One of the prime factors in a diagnosis of autism is social impairment, so it is critical for me to learn the neurological origins of intersubjectivity and how its development might be altered in autistic people. I've found some fascinating research on social awareness in infants and on how primal structures in the brain regulate social interactions, and I'll post those in a wiki that will eventually replace my chart.

The best news is that my collaborators Dr. Francis McGlone and Dr. Stephen Fairclough have developed an experiment that will be embedded in the exhibition. Everyone who visits will thus have an opportunity to contribute to our scientific understanding of autism, and it is especially gratifying for me to see how art and science can work more closely.

Thanks again for your support!  I'll be in touch.


Science & friends

It's been a busy two months since you made my campaign a success.  The main initiatives are developing a phenomenological model of autism - that is, a systematic description of how the world looks to people on the autism spectrum - and recruiting partners from the scientific world.  On both counts I've made great progress, and here are some details.

Scientific collaborators

I'm very pleased that Dr. Francis McGlone and Dr. Stephen Fairclough, both of Liverpool John Moores University, have joined Neurodiversity.

Francis is a professor of cognitive neuroscience who studies the emotional implications of touch.  In scientific terms this is called affective touch, and it is of great importance to our understanding of autism since many people on the spectrum have an aversion to what we think of as affection.  Francis has also developed a "virtual touch simulator" which we can use for the exhibition.

Stephen is an expert on physiological computing, and he is developing a next generation human-computer interfaces that are nothing short of stunning.  Through his lab the project has access to EEGs and other sensors that will allow us to create interactive environments that respond to the audience's emotional state - again a major factor in the internal experience of autism.

 Thanks to Stephen and Francis the exhibition will present an important modality in autism - touch - based on the latest research and technologies.  They are also great collaborators who have devoted many hours to helping me achieve scientific accuracy.  And, in a wonderful development that makes me think of the Renaissance, they are working to integrate a clinical research component into the Neurodiversity exhibition.

 Autistic partners

In the past few months I've had the pleasure of meeting people diagnosed with autism, both socially as adults and in special education classes.  A highlight was live a panel featuring Larry Bissonette and Tracy Thresher, two charismatic autism advocates who were promoting their film  Wretches and Jabberers.

 In May I visited education programs for autistic children in Richmond, Virginia and Toronto, Canada, spending half a day at each school where I was allowed to interact with the kids and speak with the teachers.  And I've had some illuminating discussions in Denver and New York with adults with an ASD diagnosis and their families.

Clinical literature

I've been working studying the clinical literature on autism, and I'm learning just how varied the condition is from a neurological perspective.  My focus has been on the sensory basis of the condition, and I've noticed a distinct trend towards a sensory rather than behavioral approach from the 1980s through now.

Recent improvements in fMRI and other detection technologies has made the field very exciting, but they have also revealed the complexities of human consciousness.

The opportunity to do this research is particularly gratifying to me, as I've always pondered the fundaments of cognition.  Here are three papers I found particularly illuminating.

Enhanced Visual Functioning: An ALE Meta-Analysis

We've always wondered how some autistic people can perform incredible feats of visual memory.  These researchers perform a meta-analysis of current research on the visual perception of people with ASD, and they conclude that the clinical literature buttresses that impression.  Meta-analysis is a way of validating scientific claims by using statistics to examine the results of multiple studies, in effect, performing a larger and more accurate study.  This paper is important for the project because it can be used to model the visual acuity of certain conditions associated with autism.

 A Higher Order Bayesian decision theory of consciousness

Dr. Hakwan Lau uses Bayes' theorem to model the perceptual states that result in conscious awareness.  Bayes Theorem dates to the late 1700s, and it's used to judge the probability of an event given the probability of related factors.  I found this paper fascinating because it describes a possible mathematical model of conscious awareness that can be used to underpin higher-order descriptions used in philosophy and anthropology.

Pre-attentive auditory sensory processing in autism spectrum disorder. Are electromagnetic measurements telling us a coherent story?

Many autistic people are acutely sensitive to noises and changes in their auditory environment.  In this study the authors measured the mismatch negativity response, or MMN, which is a neuroelectrical signal that is generated in response to changes in stimuli.  For instance, if someone is vocalizing 'ssssssss' and they insert a 'd' to make 'ssssssssdsssss'.  Amplification of MMN responses in some autistic individuals comes at the expense of perceptual generalizations.  Put in visual terms, they see the trees, but have trouble perceiving the forest.

Great progress!

-  A new advisor, Dr Amy Mednick, has supplied me with a wealth of clinical studies about the neurology of ASD that I'm feeding into a model of autistic perception.

-  My sister Janann Hossaini arranged for me to observe an exceptional education class in Richmond, Virginia, and I spent several hours with children diagnosed with ASD.

-  British scientists Dr Francis McGlone and Dr Stephen Fairclough have joined as collaborators, and they bring a wealth of knowledge and technologies that include tactile interfaces, emotional sensors and augmented reality.

-  Reporters from the New York Times and Newsweek have contacted me about the project, thanks to publicist Blake Zidell's pro bono effort.

-  A specialist in medical education, Shannon Stearman, is donating her time to serve as liaison to the clinical research community.

-  I'm starting to write about my findings.  Here's a piece I recently did for Family Matters

Also many people have introduced me to autistic relatives and medical contacts in the medical community, so please keep sending your thoughts my way.