Autism (2025)
Authors: Jamie Koenig, Kiley J. McLean, Meghan Haas, Megan Horvath, Mariah Vigil, Nahime G. Aguirre Mtanous, Sarah Effertz, Lauren Bishop
Abstract: This study examined how autistic adults conceptualize health and whether their conceptualizations differed substantively from those of their emergency contacts (people who helped with health or healthcare management). We conducted semi-structured interviews with 10 dyads of autistic adults and emergency contacts. A thematic analysis with deductive and inductive codes identified four main themes: (1) health is subjective well-being; (2) healthy is the absence of pain; (3) challenging neurotypical norms; and (4) differences in health definitions were smaller than perceived. Autistic participants and emergency contacts endorsed the first two themes. Only autistic participants discussed the third theme. Despite broad agreement about what “healthy” means, emergency contacts perceived significant differences between their definition of health and that of their autistic counterpart. The data suggest these differences were primarily about health behaviors. We present a model for a Personalized Health Ecosystem, describing important factors for personal conceptualization of health among autistic adults. These findings demonstrate the need for individualized care, for healthcare providers to partner with autistic patients to best support their health, and for education programs for providers who work with this community