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Anticipation of a therapeutic odyssey following predictive testing for autism
Katherine E MacDuffie1,2, Aurora M Washington3, Catherine A Burrows4
1Seattle Children's Research Institute, M/S JMB-6, PO Box 537, Seattle, WA, 98145-5005, USA. kate.macduffie@seattlechildrens.org.
Insights
Parents receiving early autism predictions for infants may struggle to find services. Prior experience influences how families seek support and information, highlighting the need for pre-implementation family support.
Area of Science:
- Neurodevelopmental disorders
- Pediatric medicine
- Genetics and genomics
Background:
- Early identification of autism spectrum disorder (ASD) is advancing with brain-based tools.
- Presymptomatic interventions for autism are under development but not yet clinically available.
- Families face significant challenges accessing existing autism services.
Purpose of the Study:
- To explore how parents of infants would utilize early predictive results for autism.
- To understand potential family pathways to seeking support based on predictive information.
- To identify differences in anticipated support needs between parents with and without prior autism experience.
Main Methods:
- Qualitative study analyzing 55 interviews with parents of infants aged 6-13 months.
- Two parent groups: those with prior experience parenting an autistic child (n=30) and those without (n=25).
- Interviews focused on hypothetical steps parents would take upon receiving an "at-risk" prediction for their infant.
Main Results:
- Both groups intended to seek services, but parents with prior experience offered more detailed plans.
- Divergent anticipated support sources: experienced parents expected to pursue insurance/disability benefits, while inexperienced parents planned to consult pediatricians or search online.
- Anticipated challenges in accessing services due to the need for a formal diagnosis.
Conclusions:
- Families receiving infant autism predictions may encounter difficulties accessing services and benefits.
- Parental prior experience significantly shapes expectations and strategies for seeking support.
- Researchers must consider providing support for families receiving predictive results before implementing infant biomarker testing.
Abstract:
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.
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