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

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.

Exploring an e-learning community’s response to the language and terminology use in autism from two massive open online courses on autism education and technology use

“…Our findings highlight that it is important for families and professionals to recognise how language used during the disclosure process may cause conflict with autistic children and young people’s identity, and to carefully consider how best to take a person-centred approach and accurately describe one’s strengths and weaknesses in a way that aligns with the young person’s identity ( Riccio et al, 2019 ). Using language that accurately describes an individual’s strengths and weaknesses is especially important as in some cases, the lack of awareness of individual differences in autism presentation among professionals can lead to issues such as diagnostic overshadowing, where co-occurring issues (such as symptoms of anxiety or low mood) may be misattributed by professionals as part of the primary autism diagnosis.…”

Come as You Are: Examining Autistic Identity Development and the Neurodiversity Movement through an Intersectional Lens

“…Autistic college students have also reported that learning they were autistic helped them understand themselves (Huws & Jones, 2011). Au-Human Development 2022;66:93-112 DOI: 10.1159/000524123 tistic adolescents whose parents talked to them openly about being autistic tended to describe themselves and autism more positively than teens whose parents did not tell them or did so involuntarily (Riccio et al, 2021). Learning one is autistic earlier in development may be associated with better psychological outcomes in adulthood (Oredipe et al, in press).…”

Trauma-Informed Care for Hospitalized Adolescents

“…For example, to ensure safety, medical staff can ask a patient’s preference about where procedures should be performed, thus protecting the patient’s bed as a place of healing. To ensure trust and transparency, clinicians should provide early and honest discussion with adolescents about their differential diagnoses and ultimate diagnosis [ 28 ]. We acknowledge that many providers may feel underprepared to address patients’ trauma histories and the possibilities of de novo and re-traumatization [ 29 ].…”