Autism Diagnosis Later in Life: What Does it Mean?

Researchers at the University of Bath surveyed 303 autistic adults to find out which factors had the greatest impacts on their quality of life. They looked at education, employment, household income, relationship status, independent living, sex, ethnicity, mental health, age at diagnosis, and autistic traits. For many of the study’s participants, learning about their autism as an adult has less of an impact than some other factors (Leung et al., 2023).   

Strongest Predictor of Quality of Life  

In this study, having more autistic traits had the biggest impact on well-being and quality of life (QoL). Researchers used the Ritvo Autism and Asperger Diagnostic Scale-14 (RAADS-14) to measure the number of autistic traits each participant experienced, both as children and as adults. Those with more autistic traits reported a lower QoL, whether they received an autism diagnosis in childhood or adulthood. 

Factors Linked to Better QoL   

Researchers in this study looked at several quality-of-life domains. Study participants who reported a higher psychological quality of life were older, had fewer autistic traits, and had no co-occurring mental health conditions. Greater physical quality of life was associated with: 

• Being employed independently 
• Being White 
• Having fewer autism traits 
• Not experiencing other mental health conditions 

Higher social quality of life was linked to:  

• Being female 
• Being in a relationship 
• Having fewer characteristics of autism 

Overall, sex, mental health, relationship status, and autistic traits influenced well-being to a greater degree than a person’s age at diagnosis.  

It’s important to note that other studies have come to conflicting conclusions about the relative impacts of these same factors (Mason et al., 2018). Some studies, for example, highlight the powerful sense of relief and regret autistic people sometimes feel when a diagnosis happens later in life (Ghanouni et al., 2023). 

Key Messages 

Autism experts have long said that early identification and intervention improve long-term outcomes for many people. That’s especially true when an autism diagnosis helps people get the support and services they need to feel good about themselves in school, in relationships, and at work (Oredipe et al., 2023).

For those who learn they’re autistic in adulthood, age at diagnosis may not be as important to well-being and quality of life as other factors. Studies like this one can help researchers, practitioners, and autistic people understand more about how to move forward when autism is identified in adulthood. 

Articles Related to Autism Diagnosis Later in Life:

• Autism is Cross-Cultural. Shouldn’t Your Assessments Be, Too?
• Lived Experiences: Autistic Girls and Women
• How Does Autism Present Across the Lifespan?

Research and Resources: 

Ghanouni, P., & Seaker, L. (2023). What does receiving autism diagnosis in adulthood look like? Stakeholders' experiences and inputs. International Journal of Mental Health Systems, 17(1), 16. https://doi.org/10.1186/s13033-023-00587-6

Leung, F. Y., Shah, P., Mason, D., & Livingston, L. A. (2023). Re-examining the association between the age of learning one is autistic and adult outcomes. Autism, 13623613231173056. Advance online publication. https://doi.org/10.1177/13623613231173056

Mason, D., McConachie, H., Garland, D., Petrou, A., Rodgers, J., & Parr, J. R. (2018). Predictors of quality of life for autistic adults. Autism Research, 11(8), 1138–1147. https://doi.org/10.1002/aur.1965

Oredipe, T., Kofner, B., Riccio, A., Cage, E., Vincent, J., Kapp, S. K., Dwyer, P., & Gillespie-Lynch, K. (2023). Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students. Autism, 27(1), 200–212. https://doi.org/10.1177/13623613221086700