“The Wrong Supports Are Worse than no Support”: Autistic Perspectives on Early-in-Life Infant Autism Supports

Authors

Abstract

Background: Evidence suggests that the earlier supports are provided to young Autistic children, the better the overall outcomes. Supports have typically only been available after an autism diagnosis but with increased knowledge about early developmental trajectories, clinical supports can now be offered prediagnosis for infants showing early autism features and/or those with a family history of autism. Nevertheless, we currently know little about the Autistic community perspectives on the acceptability of prediagnostic supports, and without this information, we cannot be confident that these supports align with community preferences and priorities. Methods: In this study, we interviewed 16 Autistic adults—10 parents and 6 nonparents—about their views on very early-in-life (i.e., prediagnostic) infant autism supports. We analyzed the data using reflexive thematic analysis. Results: Participants expressed that a range of supports should be available based on individual family needs, with design and delivery informed by meaningful input from the Autistic community. Participants strongly opposed supports that encouraged children to mask, camouflage, and/or comply with non-autistic norms. They endorsed supports where caregivers were aided to recognize and respond to infant attempts to communicate and interact, and which optimized infant quality of life and wellbeing. Beyond their perspectives on what very early supports should look like, participants also reflected on the challenges Autistic individuals—including themselves—faced trying to navigate neurotypical service systems, including often feeling unrecognized, judged, and unsupported, something that was especially difficult for Autistic adults of all genders who were new to the parenting experience. Conclusion: These findings can inform what future very early supports look like for neurodivergent infants/young children and how we can best support new parents who are themselves autistic.

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