Date of Award

Spring 2023

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Katy Drazba

Abstract

Many professional medical organizations recommend some level of genetic testing as standard of care for those diagnosed with autism spectrum disorder. However, genetic testing related to the diagnosis of autism is seen as controversial by many in the autistic community. While opinions about genetic testing have been well-documented from the perspective of the parents of autistic children, our understanding of the autistic adult perspective remains limited. We implemented a descriptive, web-based survey of autistic adults to assess their awareness of, attitudes towards, and interests in genetic testing for autism (n = 145). Our data demonstrated that half of our participants are unfamiliar with genetic testing for autism, and 86% are unaware of current medical guidelines recommending genetic testing for autism. A minority of participants held an overall positive opinion towards genetic testing (19%) and want genetic testing for themselves (17%). Furthermore, none of the commonly perceived benefits of testing were endorsed as benefits by a majority of participants. Regarding the potential development of a prenatal genetic test for autism, 16% are in support of its development and 74% are concerned that it could lead to an increase in terminations of pregnancies suspected to develop autism. These findings highlight a disconnect in perspectives about genetic testing between autistic individuals, their parents, and the medical community. Future research should continue to explore the autistic adult perspective on this topic and ensure that autistic voices are heard during the development of new tests and professional guidelines involving genetic testing related to autism.

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