Who “Speaks” For Autism and Who is “M[I]SS[I]NG”? Examining Autism Narratives and Advocacy in the Era of Genomics
Abstract/Contents
- Abstract
- Autism spectrum disorder (ASD) is a neuropsychiatric diagnosis defined by social and behavioral traits. The geneticization of ASD is connected to the historical developments of advocacy and biotechnology that collectively led up to the present era of autism genomics in the United States. Divisions within the autism community have evolved from the vast diversity of the autistic experience, including the emergence of the Neurodiversity movement spearheaded by self-advocates challenging autism genomics research and neurotypical representations of autism. This thesis addresses two key questions: (1) How do non-autistic persons develop their lived experiences into “autism narratives” that inform their understanding of autism as a medical impairment and/or personal identity? (2) How do these autism narratives shape their perceptions of autism genomics and neurodiversity? To collect primary data to construct these narratives, I conducted semi-structured interviews with individuals occupying at least one of three roles in the autism community: researchers, family members, and/or service professionals (n = 14). Data were thematically analyzed using the analytic frameworks offered from James Baldwin’s insights on identity, representation, and privilege, which I call “reflexivity.” This thesis builds upon scholarship in medical anthropology, disability studies, and science and technology studies to conceptualize autism advocacy and autism genomics research. Autism narratives form spectrums of their own, reflecting neurotypical participants’ views on the perceived utility of autism genomics research as well as their experiences occupying specific personal and professional roles in the autism community. Furthermore, autism narratives create spaces positioned between the social and medical models of disability by operating at the junctions of precision medicine, medical needs, and social perceptions.
Description
| Type of resource | text |
|---|---|
| Date created | 2020 |
Creators/Contributors
| Author | Kottakota, Harika |
|---|---|
| Primary advisor | Fullwiley, Duana |
| Advisor | Sato, Kyoko |
Subjects
| Subject | Science Technology and Society |
|---|---|
| Subject | Disability |
| Subject | Autism |
| Subject | Narrative |
| Subject | Precision Medicine |
| Subject | Medical Anthropology |
| Subject | Disability Studies |
| Subject | Autism Genomics |
| Subject | Autism Genetics |
| Subject | Autism Advocacy |
| Subject | Autism Representation |
| Genre | Thesis |
Bibliographic information
Access conditions
- Use and reproduction
- User agrees that, where applicable, content will not be used to identify or to otherwise infringe the privacy or confidentiality rights of individuals. Content distributed via the Stanford Digital Repository may be subject to additional license and use restrictions applied by the depositor.
- License
- This work is licensed under a Creative Commons Attribution 3.0 Unported license (CC BY).
Preferred citation
- Preferred Citation
- Kottakota, Harika. (2020). Who “Speaks” For Autism and Who is “M[I]SS[I]NG”? Examining Autism Narratives and Advocacy in the Era of Genomics. Unpublished Honors Thesis. Stanford University, Stanford CA.
Collection
Stanford University, Program in Science, Technology and Society, Honors Theses
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- Contact
- harika.kottakota@gmail.com
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