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Exploring Autistic adults’ perspectives on genetic testing for autism

Published:January 19, 2023DOI:https://doi.org/10.1016/j.gim.2023.100021
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      Abstract

      Purpose

      To investigate the perspectives of Autistic adults regarding genetic testing for autism. Though previous studies have explored the perceptions of genetic testing for autism among a variety of different stakeholders, to our knowledge none have explored the perceptions of Autistic adults.

      Methods

      We distributed a web-based survey via social media to English-speaking Autistic adults. The survey assessed individuals’ experiences with, attitudes towards, and interest in genetic testing for autism, and their perceptions of its potential benefits and harms.

      Results

      In total 461 respondents completed the survey: while 27% would have wanted genetic testing during childhood, 74% felt that it should only be offered if the Autistic individual is able to consent and 49% felt that genetic testing for autism should not be done at all. Smaller proportions felt testing should be routinely offered to Autistic adults and children (35% and 26% respectively). 40% felt that genetic testing was only harmful, and 15% felt it was only beneficial.

      Conclusion

      Autistic adults have concerns about genetic testing for autism. Additional work is required to bridge the divide between the Autistic community and health care providers and families to identify if and when genetic testing should be offered.

      Key words

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