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

• Published in: Autism : the international journal of research and practice Vol. 28; no. 2; pp. 433 - 448
• Main Authors: Leung, Florence YN, Shah, Punit, Mason, David, Livingston, Lucy A
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.02.2024; SAGE PUBLICATIONS, INC
• Subjects: Adult; Adults; Age; Autism; Autism Spectrum Disorder; Autistic adults; Autistic Disorder; College students; Demography; Educational Status; Humans; Learning; Limitations; Medical diagnosis; Mental health; Original; Quality of Life; Recruitment; Sociodemographics; University students; Well being; well-being; diagnosis; disclosure; quality of life; outcomes; adults
• DOI: 10.1177/13623613231173056
• ISSN: 1362-3613; 1461-7005

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.