Attitudes of Autistic Adults toward Genetic Testing for Autism

Abstract

Abstract Genetic testing for autism has been a controversial topic within the autistic community. Opinions regarding benefits, risks, and limitations of genetic testing often differ between autistic people, researchers, and healthcare providers. The present study sought to understand the beliefs, attitudes, and intentions to pursue genetic testing of autistic adults, and compare perspectives of autistic people who have had genetic testing with those who have not. An international sample of 173 autistic adults (19 [11%] who had previously undergone autism-related genetic testing) completed an online survey with questions assessing beliefs, attitudes, and intentions to pursue genetic testing. Although beliefs and attitudes about genetic testing varied widely across the sample, the “typical” viewpoint was generally moderate (i.e., not strongly in favor of or against genetic testing). Autistic individuals who had received prior genetic testing had much more positive beliefs about autism-related genetic testing (d = 0.87, CI95% [0.37, 1.36]) and attitudes toward genetics (d = 1.10, CI95% [0.61, 1.58]) compared to those who had not received such testing, although there were no meaningful differences between those same groups regarding beliefs about genetic testing unrelated to autism (d = 0.02, CI95% [-0.45, 0.49], p = .93). Intention to genetically test oneself or one’s (hypothetical) children was also significantly predicted by autism-specific beliefs, attitudes, and prior genetic testing status. A large majority of the sample (78.6%) also agreed that autistic individuals would benefit from contact with a genetic counselor in certain situations. These findings suggest that the autistic community does not have a singular view of genetic testing, and for those autistic individuals who are interested in pursuing genetic testing for themselves or a family member, genetic counselors have the potential to play a key role in clinical care.