Poster - #VH-00558 - Keywords: autism stigma behavior co-residence caregiver

Perception of Stigma in Family Caregivers of Autistic Adults

Daphne Chakurian, PhD, RN, PHN, CCM Lori Popejoy, PhD, RN, FGSA, FAAN
University of Missouri-Columbia

ABSTRACT:
Background: Family caregivers (FCG) of autistic adults provide lifelong care and experience stigma, social isolation, and negative health outcomes. Stigma and social isolation are attributed to public reactions to autism behaviors, e.g., meltdowns, and to time demands of caregiving. Evidence suggests stigma causes health disparities via social isolation. To date, little is known about factors predicting FCG affiliate stigma (self-stigmatization). The aim was to determine if FCG affiliate stigma was different if FCGs had observed recent (prior 2 weeks) autism behaviors by or co-resided with the autistic adult. Methods: Guided by the Transactional Model of Stress and Coping, this was a cross-sectional study of 79 FCGs of autistic adults recruited through autism community agencies. IRB approval was obtained, data were collected online between September 18, 2023, and January 24, 2024, and analyzed using measures of central tendency and one-way ANOVA. Results: FCGs that observed recent autism behavior (44%) had significantly higher affiliate stigma, F(1, 68) = 18.565, p < .001, η 2 = 0.21, 95% CI [0.065, 0.368]. Recent autism behavior explained a large amount (21%) of the variance in FCG affiliate stigma. FCGs that coresided (91%) had significantly higher affiliate stigma, F(1, 68) = 7.040, p = .010, η 2 = 0.09, 95% CI [0.005, 0.236]. Coresidence explained a moderate amount (9%) of the variance in affiliate stigma scores. Conclusions: The findings highlight the importance of developing strategies to decrease stigma among coresiding FCGs of autistic adults to reduce social isolation and associated negative health outcomes.