Exploring Autistic adults' perspectives on genetic testing for autism.

Researchers surveyed 461 autistic adults about genetic testing for autism. Nearly half (49%) felt genetic testing shouldn't be done at all, while only 27% would have wanted it as children. Most (74%) believe testing should only happen when the autistic person can agree to it themselves. Many saw genetic testing as harmful rather than helpful. The findings show that autistic adults have serious concerns about genetic testing that differ from what doctors and families might think.

This web-based survey of 461 English-speaking autistic adults explored perspectives on genetic testing for autism. Key findings revealed divided opinions: 27% would have wanted genetic testing during childhood, while 49% felt genetic testing for autism should not be done at all. Most respondents (74%) believed testing should only be offered when the autistic individual can provide consent. Only 35% supported routine testing for autistic adults and 26% for children.

Perceptions of harm versus benefit were polarized, with 40% viewing genetic testing as only harmful and 15% as only beneficial. The study highlights significant concerns within the autistic community about genetic testing and suggests a disconnect between community perspectives and healthcare practices.

Healthcare providers should be aware of significant concerns within the autistic community regarding genetic testing. The preference for individual consent suggests need to reconsider pediatric testing protocols. The disconnect between community views and current practices indicates need for better dialogue and shared decision-making approaches when discussing genetic testing options.

Study limitations include potential selection bias through social media recruitment, focus only on English-speaking participants, and lack of information about response rates or demographic characteristics of respondents. The study design and methodology details are not fully described in the abstract.

This study aimed to investigate the perspectives of Autistic adults regarding genetic testing for autism. Although 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. We distributed a web-based survey via social media to English-speaking Autistic adults. The survey assessed individuals' experiences with, attitudes toward, and interest in genetic testing for autism and their perceptions of its potential benefits and harms.

In total, 461 respondents completed the survey: 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). A total of 40% felt that genetic testing was only harmful, and 15% felt it was only beneficial. 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.