A quarterly publication of the Autism Research Institute

The Autism Research Review International is quarterly publication of the Autism Research Institute

Summer, 2023 | Number 3, Volume 37

Age at diagnosis may not influence well-being of individuals with autism spectrum disorders

While a recent study reported that people who learned they were autistic at a young age fared better than individuals diagnosed at a later age (see ARRI 2022, No. 3), new research suggests that age at diagnosis may not correlate with a person’s quality of life as an adult. 

Florence Leung and colleagues asked 300 autistic adults to report the age at which they learned that they were autistic, as well as the age at which they received a diagnosis. In addition, participants provided information about their autistic traits, as well as data on a wide range of personal and demographic factors. 

The researchers note that their study included a larger sample than the earlier study, and differentiated between the time when participants first learned that they were autistic and when they actually received an official diagnosis. In addition, the researchers analyzed many other factors contributing to overall quality of life, as well as exploring specific aspects of quality of life. 

“Contrary to the previous study,” they say, “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.” 

Leung says, “Our findings revealed that having more autistic personality characteristics—irrespective of when you learn you are autistic—was the strongest link to poor outcomes across all areas of quality of life.” Additionally, the researchers found that autistic women reported a higher quality of life than autistic men, and people with additional mental health conditions such as anxiety reported a lower quality of life. 

Study coauthor Lucy Livingston comments, “For some people, finding out they are autistic sooner rather than later was linked to a better quality of life. For others, finding out later was better. Overall, there was no overall link between the age they found out and their quality of life.” 

She adds, “There could be many reasons for this. Getting an autism diagnosis does not always lead to any meaningful additional support, so it could be that autistic people who learn they are autistic at an earlier age did not necessarily experience a benefit to their life quality. Equally, a late diagnosis in adulthood can be a positive experience, helping people to make sense of themselves, which may improve their self-reported quality of life. The take-away message is that the impact of an autism diagnosis on someone’s quality of life is different for everyone.” 

The researchers say, “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.” However, they say, “[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.”


Citations

“Re-examining the association between the age of learning one is autistic and adult outcomes,” Florence Y. N. Leung, Punit Shah, David Mason, and Lucy A. Livingston, Autism, June 14, 2023 (free online). Address: Lucy Livingston, Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, De Crespigny Park, London SE5 8AF, UK, [email protected].

 —and—

 “Finding out you’re autistic in later life can be a positive experience, say researchers,” news release, Medical Xpress, June 15, 2023.