Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students

Abstract

Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is “ready.” In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students ( n = 78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted contextual factors to consider when telling a child about autism. Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive in adulthood. Lay abstract People learn they are autistic at different ages. We wanted to know if telling kids they are autistic earlier helps them feel better about their lives when they grow up. We are a team of autistic and non-autistic students and professors. Seventy-eight autistic university students did our online survey. They shared how they found out they were autistic and how they felt about being autistic. They also shared how they feel about their lives now. Around the same number of students learned they were autistic from doctors and parents. Students who learned they were autistic when they were younger felt happier about their lives than people who learned they were autistic when they were older. Students who learned they were autistic when they were older felt happier about being autistic when they first found out than people who did not have to wait as long. Our study shows that it is probably best to tell people they are autistic as soon as possible. The students who did our study did not think it was a good idea to wait until children are adults to tell them they are autistic. They said that parents should tell their children they are autistic in ways that help them understand and feel good about who they are.

Phenomenology of gender dysphoria in autism: a multiperspective qualitative analysis

“…Previous qualitative findings have indicated that autistic YP often distance themselves from the autism label (Calzada, Pistrang, & Mandy, 2012 ; MacLeod, Lewis, & Robertson, 2013 ). Recent quantitative research demonstrated that length of time since autism diagnosis was associated with more positive well‐being: it is possible that over time, autism diagnoses are assimilated into one's sense of self‐leading to more positive outcomes (Oredipe et al., 2022 ), and the qualitative findings in this study support this hypothesis. Parents and YP clinicians often placed more emphasis on autism as an important part of their child's identity than the YP themselves.…”

“…Furthermore, it was not possible to record characteristics of potentially eligible participants who declined to share their details with the research team: possible factors for declining to participate could be having less positive rapport with healthcare clinicians, less investment in one's autism diagnosis, more severe mental health needs or in the case of YP, having parents who are unsupportive regarding their gender identity: such individuals may therefore be underrepresented in our sample. Half the autistic adults were diagnosed with autism in adulthood and therefore may well have had different perspectives on autism (Oredipe et al., 2022 ). However, a strength of IPA analysis is that context and idiography directly inform the analysis, so these different perspectives and life experiences are considered throughout the analysis.…”

Understanding language preference: Autism knowledge, experience of stigma and autism identity

“…Ritsher et al suggest that although one’s individual history of discrimination may affect their morale and view of their disability, the impact of stigma on well-being is malleable. It might also be that for those who receive their diagnosis later in life, the diagnosis can represent a sense of relief or sense-making about their experience (Harmens et al, 2022; Oredipe et al, 2022) or include sources of information that are more neurodiversity-affirming (e.g. social media; Bury et al, 2022), and thus be more positively associated with their own identity.…”

The Why-When-How-What Model: Autistic Persons Advise Parents on Diagnosis Disclosure

“…Most used at least one informational resource to help their child understand the diagnosis (Kiely et al, 2020). Oredipe et al (2022) asked autistic university students when and how they would "tell their own autistic child about autism?" The participants offered several recommendations, such as considering the child's developmental level, curiosity, and personality, but all emphasized the importance of early disclosure.…”

“…Riccio et al (2020) found that autistic adolescents who had been voluntarily informed of their diagnosis by their parents tended to incorporate their unique strengths into their personal de nitions of autism, compared to adolescents whose parents had not told them about the diagnosis, or had told them involuntarily. Oredipe et al (2022) examined the effects of autism disclosure on well-being and quality of life (QoL) in a sample of autistic university students, and found disclosure at a younger age was associated with higher well-being and QoL. In contrast, Leung et al (2023) examined a more sociodemographically diverse sample of autistic adults, and found that age of disclosure did not predict QoL and well-being in adulthood.…”