On Thursdays at noon Yhouse holds a lunch meeting at the Institute of Advanced Study, in Princeton. The format is a 15 minute informal talk by a speaker followed by a longer open-ended discussion among the participants, triggered by, but not necessarily confined to, the topic of the talk. In order to share I am posting a synopsis of the weekly meetings.
Synopsis of YHouse Lunch Talk 2/16/2017
Eiko Ikegami presented “Avatars on the Spectrum: Rashomon and Mysteries of Autistic Experiences”.
Present were: Eiko Ikogami, Piet Hut, Yuko Shihara, Susan Schneider, Nicolaas Rupke, David Fergusson, Ayako Fukui, Michael Solomon, Olaf Witkowski, Jeff Ames, Monica Manolescu.
Eiko shared that 10 years ago she began using an Avatar on a virtual reality site to communicate with people on the Autistic Spectrum. These people often had difficulty interacting with others related to sensory overload and other factors that could be reduced in virtual reality. She compared the reality of people on the autism spectrum with the 1950 movie Rashomon directed by Akira Kurosawa. In the movie, set in feudal Japan, Kurosawa uses flashbacks told by four characters to describe an event in which a woman is raped and her husband is murdered, but any other details of what happened are not at all clear. The Rashomon effect is used now to describe the circumstance when the same event is given contradictory interpretations by different individuals involved. She noted that what is currently missing in Autism research is the subjective experience of autistic people. She described three elements of the autistic experience: 1) sensory perceptual experiences, 2) Mental experiences, and 3) Social Experiences. One woman could write fluently, but could not speak. Temple Grandin has described how her perceptions differ from those of people who are not autistic allowing her to identify more immediately with animals. Satsuki Ayaya is a Japanese woman whose autobiography describes her own experiences. With permission, Eiko attended over 100 weekly support sessions between 2012 and 2016 in the form of her Avatar. An autistic woman, Anice, has acted as moderator of the group for years. Anice described how in her own life she was unable to help their mother in the kitchen, while her sister could. Anice said she could see and hear, but not in the same way as non-autistic people. Eiko reviewed multiple theories of Autism including the Theory of Mind (mind blindness), Systematizing (a strength) vs Empathizing (a weakness), the Weak Central Coherence Theory (inability to see the big picture), genetic markers (over 800 autism related genes known), and concluded that it may be time to give up the search for a theory that covers all the characteristics of this spectrum, from Ashberger’s to those who are completely nonfunctional and dependent. Her research is aimed at adding the subjective experience of those with autism to the picture. She compared the use of the avatar to the use of a medium in Rashomon to allow the dead husband to speak.
Discussion began with Susan Schneider describing her own experience with Second Life, a Virtual Reality site, and noting that there was still difficulty knowing the experience of those with lower functioning on the autism spectrum, as they were not able to participate in the support group. Michael Solomon discussed neural mechanisms for interpreting sensory input focusing on the heteromodal cortex as the site where the brain processes input from many other sites to create a coherent model of the world. This processing might be deficient (or different) in autism. Eiko responded that this had overlaps with the 20 year old weak central coherence theory that had some limitations. She described an ongoing study in Japan comparing Olympic athletes with Autistic people focusing on the mind/body connection with possible applications for robotics and A.I. Monica Manolescu shared her perspective on the use of “I”, first person, in literature. “I” is the person who says, “I”. Autistic people have difficulty establishing an “I” or may have a truncated sense of self. She reported that I and You are persons, but He, She, and It are non-persons, and some autistic people, like many children under the age of 4 or 5, refer to themselves in the third person. Perhaps the use of Avatars in virtual reality allows them to have an identity more easily. Nicolaas Rutke referred to a recent astrophysics seminar and asked, “Can you imagine a world in which all intelligent beings are autistic, or a world where we would all be considered autistic?” Eiko responded that approaches to Autism started as a medical Model in the pediatric population as parents were unable to manage the children. The condition was labelled a Disorder. Now with grown ups being able to define their own condition, those models may not apply. Her own experience with English as a second language might be analogous in some ways as she may miss details and subtleties in English that she would note in Japanese. Susan asked for more specifics on what the people said in virtual reality. Eiko replied that some have Kinesthesia, i.e. letters or sounds have colors or other sensations. One woman said she had this lifelong but never knew what it was. For her, sound has taste just like food does. Some in the group made rules to help them interact, such as asking if something she was about to say was for her own benefit or the benefit of the group. She also had a rule that allowed breaking rules. David Fergusson asked about the outcomes for those in the group. Eiko responded that this activity was not a therapy but was a socializing exercise. The fact that it has lasted as 2 hours/week for 7 years was a statement about the benefit. Olaf asked if we agree that different populations may have different norms for behavior, then do we use suffering as a basis for treatment? Is it better to be in a comfortable cocoon than to interact despite painful or uncomfortable sensory distractions? Once again, there is a strong argument for obtaining first person subjective accounts from those living with autism in order to understand what it is.
Respectfully submitted, Michael Solomon