Commentary: Addressing stigma through relational research design

Abstract

The history of research on parenting autistic children is complicated by the inheritance of “mother-blaming,” which continues to occur, albeit indirectly or implicitly. Parents of autistic children often experience and internalize stigma, which arises from the messaging that suboptimal parenting can exacerbate a child's autistic traits. This stigmatization is echoed by parents of other neurodivergent groups, including ADHD. For neurodivergent parents of neurodivergent children, this stigma may be compounded, since stigma is experienced both as a neurodivergent individual, and as the parent of a neurodivergent individual. Researchers have an ethical duty to pay attention to experiences of stigma when we study any vulnerable group so that stigma does not become a barrier to participation. In this commentary, I critically reflect on a study I designed, which did not adequately address parents’ potential stigma or sufficiently anticipate the impact of experiences of stigma on participation. I then outline the steps I took to modify the design, framed within a relational ethics of care, to acknowledge and account for the stigma that might have otherwise excluded parents of autistic children—especially parents who are autistic and otherwise neurodivergent themselves—from participating.