Family Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Ecological Associations
Objectives: To develop a parent-reported scale of community ASD stigma. To assess child, family, and health system associations with community ASD stigma.
Methods: A random sample of Latino and non-Latino white parents of children with ASD seen at specialty clinics in California, Colorado, and Oregon in 2014-2015 (n=370; response rate 76.2%) were surveyed about experiences with ASD stigma and barriers to ASD diagnosis. The mixed-mode survey was performed in English or Spanish, and ASD diagnosis was verified via medical record review. Confirmatory factor analysis was used to create a scale of perceived community ASD stigma. Bivariate and multivariable analyses then compared associations of child, family, and health system characteristics with community ASD stigma.
Results: Confirmatory factor analysis results supported a single factor solution with 8 of 11 possible survey items best reflecting community ASD stigma. These eight items demonstrated good internal consistency (α=0.80). Nested regression model results suggested that child characteristics associated with greater community ASD stigma included having public health insurance and experiencing moderate or severe ASD. Family characteristics associated with greater ASD community stigma included having more children with ASD per household, having lived outside the U.S., and having a family structure that was divorced, separated, or widowed. Experiencing a greater number of barriers to ASD care was associated with greater community ASD stigma.
Conclusions: Factors at several ecological layers may influence perception of stigma among parents of children with ASD. These results may be notable to those attempting to reduce stigma about ASD as the identified child, family, and health system factors could be target points for future campaigns.