Challenging neurotypical norms: Autistic adults' understandings of health.

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.Lay AbstractAutistic adults experience worse health and have a higher risk of mortality on average. Many autistic adults say that physicians and other healthcare providers do not understand autism and autistic people's needs. This study wants to understand how autistic adults specifically understand healthy habits as this could inform better care. We interviewed 10 autistic adults and their emergency contacts (family or friends who help them with healthcare decisions) about how they understand health and what they do to be healthy. We compared what the two groups said. Both autistic adults and their emergency contacts said that being healthy could look different for everyone. Beyond physical health, participants talked about mental, financial, and spiritual health. Participants described "healthy" as the absence of pain, though the fact that you can be in pain and healthy was mentioned. Autistic adults and their emergency contacts described health similarly. Autistic adults, however, shared more non-traditional health-promoting behaviors. These findings can help healthcare providers better understand how to work with autistic patients. Physicians should work with autistic patients on how to be healthy, rather than assume that autistic adults do not understand health.