17- Understanding ableism in grant application abstracts for genetic and genomic autism research

The language of research is an indicator of its evolving priorities and ethics. Research documentation, including abstracts in grant applications, are subject to both formal requirements and explicit and implicit norms. Evaluating the language of research can prompt researchers and research institutions to reflect on how they pursue their work, leading to changes that promote greater inclusion and equity. In recent years genetic and genomic autism research has come under increasing scrutiny, moving to the center of debates about autism acceptance and the future of research and care. Many recent critiques of genetic and genomic autism research hinge on the idea that such research is often ableist: that it values abled over disabled and nonautistic over autistic life, and assumes that autistic children and adults require interventions in order to meet societal expectations rather than vice versa. We conducted a mixed-methods analysis of 200 abstracts associated with NIH-funded genetic and genomic autism research since 1980, to explore the prevalence of ableist language and discourse about autistic people and to identify when they are more likely to be used. Our results indicate a consistent and very high prevalence of ableist language and discourse in genetic and genomic autism research abstracts. We identify an overarching ableist narrative that researchers draw on when describing their research. We argue that researchers must reflect on their language and on the conception of autism that it invokes, with a view to reducing generic and ableist assumptions and describing their research and its impact with greater precision.

Authors: Chris Gunter, National Human Genome Research Institute, National Institute of Health; John Kee, Thomas Jefferson University; Nicola Sugden, National Human Genome Research Institute, National Institute of Health