How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism?

Authors

Abstract

A large body of literature examines parental interpretations of their child’s autism diagnosis. However, research examining intersections between parental disclosure of their child’s autism diagnosis to their child and their child’s identity development is lacking. The primary aim of this study was to analyze if parental decisions to disclose/withhold their child’s autism diagnosis influence adolescents’ perceptions of autism and identity development. Adolescent participants ( n = 19) and their mothers, recruited from an informal educational program, completed in-person interviews and online questionnaires, respectively. Adolescents were told about their autism diagnosis in varying ways. Adolescents whose parents voluntarily disclosed their autism diagnosis to them described autism and themselves more positively than adolescents who did not experience voluntary disclosure. Although parents and teens showed similarities on a group level when defining autism, parents and children expressed diverse themes in their definitions of autism. Findings suggest that parents can help their children develop neurodiversity-aligned perspectives about autism by mindfully discussing autism with them early in their development. Lay abstract There is a lot of research about how parents think about their child’s autism but we don’t know much about how parents talk with their kids about autism. How parents talk with their kids about autism may shape how kids see autism. A team of autistic and non-autistic people (including a mother of an autistic person) did a study. We wanted to know if how parents talk with their kids about autism shapes how their kids see autism. Nineteen teens from a summer camp did interviews and surveys. Their mothers did surveys. Teens learned about if they had autism in different ways. Some teens still didn’t know they were autistic. Teens whose moms chose to tell them about their autism talked about autism and themselves more positively than teens whose moms didn’t choose to talk with them about autism. Only teens whose moms chose to talk with them about autism described themselves as having social strengths. Teens had a harder time defining autism than moms. However, teens and moms talked about autism in similar ways. Our study shows that parents can help their kids see autism and themselves more positively by talking with their kids about autism early in development.

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