Re-examining the association between the age of learning one is autistic and adult outcomes

Abstract

It was recently reported that learning one is autistic earlier in life is associated with greater quality of life and well-being in university students. In a pre-registered extension of this work, we addressed several limitations of this study by (a) recruiting a larger sample of more diverse ages and education levels, (b) distinguishing between learning about and receiving an autism diagnosis, (c) accounting for additional confounding variables, and (d) studying different quality of life dimensions. Autistic adults ( N = 300) reported when they first learned they were autistic, as well as when they actually received an autism diagnosis, and provided detailed socio-demographic information. Participants also completed measures of their autistic traits, as well as well-being and quality of life across multiple domains. In contrast to recent research, we found the age participants first learned they were autistic did not significantly and uniquely predict their quality of life and well-being. Rather, having more autistic traits was the strongest predictor of poorer quality of life and well-being, while other socio-demographic factors were also relevant. We discuss the implications of these findings for understanding and improving outcomes in autistic adults and call for higher quality open science on this important topic. Lay abstract An interesting recent study found that people who learned they were autistic at a younger age felt more positive about their lives (i.e., had better quality of life) than those who learned at an older age. However, this study has some limitations: (a) the study only involved a fairly small group of university students, (b) whether ‘learning one is autistic’ referred to learning about one’s diagnosis or receiving one’s diagnosis was unclear, (c) the influence of other factors on the link between age of learning one is autistic and quality of life was not considered, and (d) the assessment of different areas of quality of life was limited. Addressing these limitations, we re-examined whether the age at which one learns they are autistic relates to quality of life in adulthood. Contrary to the previous study, we found the age at which one learns about their autism does not have a significantly independent impact on their quality of life as an adult. Rather, other factors (e.g., autistic traits, sex, and additional mental health conditions) may have a greater impact. Given our participant sample was larger and more diverse in age and education level compared to previous research, this finding is likely to be more applicable to autistic adults from different backgrounds. Importantly, however, we are not suggesting that individuals should be made aware of their diagnosis later than sooner. Getting a timely diagnosis remains crucial for autistic people and their families to access appropriate support.

Autistic identity: A systematic review of quantitative research

“…For example, Oredipe et al (2023) spoke to 78 Autistic university students using an online survey about when and how they found out they were Autistic and found that, while participants who learned they were Autistic at a younger age had higher quality of life and wellbeing in adulthood, participants who learned they were Autistic at an older age had more positive initial reactions about being Autistic. Leung et al (2023), however, failed to find a significant relationship between the age of learning one was Autistic and well-being when Autistic traits were accounted for. Riccio et al (2021) examined the impact of how one's autism was disclosed to them (i.e., voluntary versus involuntary parental disclosure) and found that adolescents whose parents voluntarily disclosed their autism diagnosis to them were more positive about being Autistic than those whose parents involuntarily disclosed.…”

Happier on the outside? Discourses of exclusion, disempowerment and belonging from former autistic school staff

“…A complicating factor and potential limitation of this study is that not all participants knew themselves that they were autistic while working in schools, and although research indicates that sharing a diagnosis at work does not always feel safe for autistic people in the school sector (Wood & Happé, 2021) and elsewhere (Romualdez et al, 2021), it may be that this information could have helped the participants in this study at the time. It is also not clear whether late diagnosis per se has a negative impact on individual outcomes (Leung et al, 2023). Furthermore, the growth of the neurodiversity movement, which posits, inter alia, strengths-based approaches to disability and difference (den Houting, 2019), is potentially sowing the seeds for better understanding of autistic and otherwise neurodivergent school staff across a range of work sectors.…”

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

“…He added that this made him react aggressively: "Only in fth grade did I agree, or sixth grade -I nally agreed to listen". Emma (27) who was told at age 16, said: "At rst, I felt so uneasy that I said, I don't have it. I think it was hard for me to accept… my diagnosis because it's hard to be different".…”

“…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. Rather, having more autistic traits was a strong predictor of poorer outcomes.…”