Anticipation of a therapeutic odyssey following predictive testing for autism

Brain-based tools are being developed to identify infants at ultra-high likelihood for developing autism and enable presymptomatic intervention, though such interventions are not yet clinically available. Given persistent challenges in accessing autism services, we sought to understand how families might use early predictive results to seek support. We analyzed 55 interviews with parents of infants aged 6-13 months; one group had experience parenting an older autistic child (n = 30), the other had no prior autism parenting experience (n = 25). All parents were asked what steps they would take if told their infant was likely to develop autism. Both groups described an intent to find appropriate services; parents with prior autism experience provided more specifics based on prior knowledge. The groups diverged in their anticipated supports and information sources. Parents with autism experience anticipated seeking financial support via insurance and disability benefits; those without autism experience reported they would consult their pediatrician for information or search online. This qualitative study was conducted with a sample of parents selected for their specific life experiences, but likely does not capture the full range of potential responses to biomarker testing in infancy. Given that most services and benefits require a formal diagnosis, families receiving predictive results in infancy will likely face challenges finding appropriate services. Prior to implementing predictive testing in the first year of life, researchers should consider their obligation to support families who receive predictive results.