What do parents of nonverbal and minimally verbal autistic children think about genomic autism research?

Kathryn Asbury*, Umar Toseeb, Naomi Barrow

*Corresponding author for this work

Research output: Working paperPreprint


Purpose: In Summer 2021 a genomic study of autism, Spectrum 10K, was paused due to backlash from the autistic community. This raised important questions about how the autistic and autism communities perceive genomic research. The PEAPOD study was established to address this issue among a range of sub-groups within these communities.
Methods: Twenty parents of nonverbal or minimally verbal autistic children took part. Data were provided in diverse formats including online interviews, telephone interviews and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis.
Results: Participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt excluded from the autistic and autism communities, and that the dominant voices in those communities do not represent them or their children.
Conclusion: Genomic researchers need to work with the autistic and autism communities to design future work, and it is important to ensure a representative range of voices are heard.
Original languageEnglish
Publication statusPublished - 6 Jan 2023


  • autism
  • nonverbal
  • minimally verbal
  • Spectrum 10K
  • reflexive thematic analysis
  • qualitative
  • inclusion
  • co-production

Cite this