How do autistic adults and their families experience, understand, and manage gastrointestinal (GI) symptoms in daily life? A qualitative manuscript from the GI Wanna Talk About Autism Study

Authors

Abstract

Background: Gastrointestinal (GI) symptoms are common, chronic, and often disabling among autistic individuals. Research has largely focused on children, with limited attention to experiences in adulthood. Prior qualitative work highlights substantial unmet GI-related healthcare needs among autistic children, including negative care experiences and limited access to autism-informed services. Methods: Using a community-based participatory research (CBPR) framework, we conducted qualitative interviews with 26 participants (21 autistic adults, 5 parents reporting on behalf of an adult autistic child), of varying race, sexual orientation, genders, socioeconomic and educational statuses, and ages. Interviews were conducted on Zoom, ranging from 22-110 minutes long, exploring the physical, emotional, and functional impacts of GI symptoms; how these experiences relate to autism; barriers to treatment; and participants' needs and priorities for improving GI health care (priorities reported elsewhere). We conducted a reflexive thematic analysis following Braun and Clarke, using an interpretivist-constructivist epistemological stance. Coding and theme development were inductive and data-driven. Themes were refined collaboratively through repeated engagement with the data, analytic memoing, and discussion of areas of interpretive uncertainty until shared meaning and coherent thematic structure were achieved. Once the codebook and thematic structure were finalized, all transcripts were systematically coded for analysis. Results: Participants described gastrointestinal symptoms as chronic, unpredictable, and highly consequential, shaping physical functioning, emotional wellbeing, daily routines, autonomy, and social participation. Symptoms were understood as arising from interacting biological, sensory, emotional, and contextual factors, with triggers often difficult to identify or anticipate. Experiences with healthcare were frequently characterized by dismissal, communication barriers, system complexity, and prior trauma, contributing to delayed or avoided care and heightened distress. In response, autistic adults and caregivers relied on individualized, trial-and-error management strategies - including avoidance of triggers, routine and environmental planning, dietary and pharmacologic approaches, and sensory or emotional regulation - alongside social support and peer communities to cope with persistent uncertainty and limited clinical guidance. Conclusion: GI symptoms in autistic adults frequently have dramatic negative impacts on everyday life, reducing both quality of life and restricting the ability to fully engage in society and desired activities. Despite the clear magnitude of impact, knowledge and support are lacking and management remains difficult, confusing, and often unsuccessful. Improving care will require multi-layered, neurodiversity-informed approaches that recognize autistic adults as central knowledge-holders and active partners in research and clinical decision-making.

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