Indian caregiver’s perceived acceptance of their child’s autism diagnosis and the influence of caregiver stress and knowledge

Purpose Cultural differences in the construct of “autism” combined with limited knowledge or availability of services have been shown to greatly impact a family’s well-being. As caregivers are vital to the development of autistic youth, it is necessary to understand their perspectives as well as misconceptions to more effectively offer resources or support. The purpose of this paper, therefore, was to understand the impacts on the expectations of Indian caregivers after their child’s autism diagnosis and how the social environment and immediate community members may influence a caregiver’s stress or acceptance of such a diagnosis. Design/methodology/approach A convenient sample of 29 caregivers from urban settings in India was gathered through an online survey distributed through local physical therapy clinics and social media groups. Participants were asked to complete the Autism Stigma and Knowledge Questionnaire, Parental Stress Scale, Societal Attitudes Toward Autism scale and Intolerance of Uncertainty Scale. Data were examined for relationships among variables based on the caregiver’s perceived acceptance of their autistic child at the individual, spouse or society. Findings Caregivers, individually, reported an overall perception of a positive acceptance of their child’s diagnosis; however, caregivers perceived more pervasive negative responses from their spouses and those from their community (i.e. society). Significant differences in how parents perceived the stigma, attitudes, stress and uncertainty were seen between their responses regarding: (1) self (individual); (2) their spouse; and (3) society; however, post-hoc t-tests failed to demonstrate significant differences between groups. Originality/value These findings suggest that empowering caregivers with knowledge about autism is an important first step to ensuring the acceptance of their child’s diagnosis, particularly for two-parent households. Additionally, the misconceptions about autism need to be counteracted at the societal level to reduce the additional burden on caregivers.