This week, we will highlight an Illness Narrative from the September 2016 issue of the journal (available here). Here we feature Ellen Badone, David Nicholas, Wendy Roberts, and Peter Kien’s article “Asperger’s Syndrome, Subjectivity and the Senses.” To read the full article, click here.
As previous blog highlights suggest, the intersections of research and illness narratives are important to an anthropological perspective on subjectivity and experience. Badone and colleagues situate their article within narrative phenomenology. They discuss how constructing an illness narrative gives patients and families hope, and frames their experiences in a positive direction. The personal narrative, then, allows individuals to express their agency in hostile structural and environmental settings. The narrative also serves as a valuable first-hand account from which medical anthropologists can learn more about the subjective experience of illness.
The authors perform a close reading of an autobiographical narrative recounted by Peter, a young man diagnosed with Asperger’s Syndrome, a type of autism spectrum disorder (ASD.) Badone and colleagues aim to describe Peter’s case to widen understandings of the lived experience of people with autism. Responding to Olga Solomon’s 2010 article “Sense and the Senses: Anthropology and the Study of Autism,” this paper calls into question key assumptions in the clinical and popular literature about ASD relating to theory of mind, empathy, capacity for metaphorical thinking, and ASD as a life-long condition.
Badone and colleagues begin with a brief history of the diagnostic label of ASD, then describe the ethnographic-autobiographical process. Peter, the pseudonym chosen by the young man whose story is told in this article, reflects on his life experiences and articulates his awareness of autism and its impact on his life. An important recognition that Peter makes is that he senses many of the places he encountered were characterized by the “opposite of accommodation.” In the context of his elementary and high school for example, Peter describes how his need for calm and respite were disregarded in the noisy, abrasive environments. But it is Peter’s mother who is his metaphorical, and social, link to the world he felt dislocated from. Peter describes how it was his mother’s love and guidance which kept him alive and motivated to improve his life.
As Peter continues to narrate his experiences, however, he begins to intentionally seek out interactions in unwelcoming social environments. To Badone, Peter’s later decisions to submerse himself in activities that he found difficult, such as unexpected social situations and interactions, was an unconscious therapeutic response. This response mirrored the principles of cognitive behavioral therapy (CBT). To Badone’s astonishment, Peter had unintentionally started a treatment regimen to gradually lessen his anxiety, decrease his “meltdowns,” and become more independent. But to do so, Peter had to alter his own connection to a social environment that initially felt closed to him.
Badone and colleagues conclude, upon analyzing Peter’s narrative, that quality of life improves when individuals with autism are allowed to flourish in a social milieu of acceptance and understanding. Through the narrative, and through phenomenological examination of moments in Peter’s life, Badone and Peter hope to foster understanding and to urge others to create inclusive communities where social interaction is supported and individuals are not made to feel unwelcome. They seek to make autism more coherent to the non-autistic world and thereby to promote the larger ethical goal of creating flexible communities open to accommodating neurodiversity.