Exploring Autistic adults' perspectives on genetic testing for autism.

Area of Science:

• Neurodevelopmental Disorders
• Genetics
• Autism Spectrum Disorder Research

Background:

• Previous research on genetic testing for autism has primarily focused on stakeholders other than Autistic adults.
• Understanding the perspectives of Autistic individuals is crucial for ethical considerations in genetic testing.

Purpose of the Study:

• To investigate the views of Autistic adults on genetic testing for autism.
• To explore Autistic adults' experiences, attitudes, and interest in autism genetic testing.
• To assess perceptions of potential benefits and harms associated with genetic testing for autism.

Main Methods:

• A web-based survey was distributed to English-speaking Autistic adults via social media.
• The survey collected data on experiences, attitudes, interest, and perceived benefits/harms of genetic testing for autism.

Main Results:

• 461 Autistic adults completed the survey.
• Significant portions of respondents expressed reservations: 49% felt genetic testing for autism should not be performed at all, and 74% believed it should only be offered if the Autistic individual can consent.
• Views on routine offering varied, with 35% for adults and 26% for children. Perceptions of harm and benefit were divided, with 40% viewing it as only harmful and 15% as only beneficial.

Conclusions:

• Autistic adults harbor significant concerns regarding genetic testing for autism.
• There is a need for enhanced communication between the Autistic community, healthcare providers, and families to establish guidelines for offering genetic testing.
• Further research is required to address the ethical and practical considerations of genetic testing within the autism community.