Why Fact is Fiction and Fiction Fact: Representations of Autism Spectrum Disorders in Life Writing Narratives and Life Science Debates
With the proliferation of life writing accounts written by people on the autism spectrum, the foundation of research centers, political and self-advocacy groups, as well as the publication of popular movies like “Rain Man,” autism has gained considerable prominence over time. Not only in the disciplines of medicine, the neurosciences, psychiatry, epigenetics, and sociology has it evolved into a hotly debated and extensively researched topic, but also in the field of literature Autism Spectrum Disorders have developed into a much discussed subject. And still — since its “discovery” in the 1940s by Leo Kanner and Hans Asperger — autism has been framed predominantly in a scientific context. Only recently, representations of autism have become an integral part of the literary landscape, to a degree to which its narratives have emerged into an independent sub-genre; stories about autism are no longer exclusively told by clinicians, scientists, or other professional experts, but by autistic people or their families themselves.
The genre of life writing is closely linked with larger ethical questions and implications with regard to authenticity and personhood. However, the ethical debate surrounding life writing narratives in terms of “authentic authorship” and credible self-representation becomes even more complicated when we engage with accounts written by and about people with autism. Given that many people on the autism spectrum often communicate in non-standard ways and may even lack the ability to narrate their own experiences, problems with regard to narration and narratability inevitably arise. How do we know if a life story told is true or not? Does it even matter? Who has the authority of defining what autism is and how to live with it? Is it the predominant explanatory models provided by biomedical, epigenetic and neuroscientific research or rather the stories of lived experience written by people who are either directly or indirectly affected by autism, such as parents and close relatives? And, in what way do the fields of life writing and life sciences interact and inform each other, thereby functioning as producers of meaning and knowledge about autism? After all, there is a great number of different stakeholders that are involved in the controversy surrounding the different attitudes towards and concepts of autism, which raises the condition from an individual to a collective level of political and cultural relevance.
In my dissertation I argue that narratives about autism are not usually understood with regard to their “facticity,” as it seems more accurate to explore them in a continuum between “fact” and “fiction.” I will demonstrate that the fields of life writing and the life sciences are mutually contingent on one another. Ultimately, it will be my goal to go beyond the existing fact and fiction debate and show how the narratives I investigate can possess a transformative significance as epistemic meeting grounds through which lived experience and a shared reality are (re)negotiated on both an individual and a collective level.
Author: Natalie Kruse