“You Become Yourself,Your Full Self,the True Self”: A Systematic Review of Neurodivergent Adults’ Experiences of Identity Reconstruction Following Diagnosis of Autism and/or ADHD in Adulthood

Abstract

Background:

Growing numbers of adults are being diagnosed as autistic or having ADHD later in life, leading to a range of emotional responses and queries around identity. This review explores the process of identity reconstruction in late-diagnosed autistic and ADHD adults, examining both shared and distinct aspects of identity in each group, to better understand how diagnosis affects self-perception and to guide future post-diagnostic support.

Methods:

Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and Joanna Briggs Institute (JBI) guidelines, we entered search terms relevant to autism, ADHD, delayed diagnosis, and identity into multiple databases. After screening titles and abstracts, two raters reviewed full-text articles to determine their inclusion with substantial inter-rater reliability. We extracted and coded qualitative data, with themes identified through thematic analysis.

Results:

The search strategy identified a total of 6894 articles, of which 5470 were duplicates. Reviewers screened 1423 articles. A final set of 25 articles was identified, with 12 articles exploring ADHD diagnoses and 13 articles exploring autism diagnoses. Our thematic analysis of the articles suggests that individuals experience a profound reevaluation of their identity following diagnosis in adulthood. Three overarching themes were identified, reflecting experiences shared across autism and ADHD, as well as distinctions unique to each condition: 1. Reconfiguring the self; 2. Finding the self through others; and 3. Emotional integration of the self. Participants grappled with confusion, reinterpretation of past experiences, and developed a more authentic sense of self, a process that was facilitated through finding belonging among neurodivergent peers. Emotionally, this process required navigating grief, internalized stigma, and negative self-perceptions. Diagnosis was transformative, offering validation and empowerment to participants. Overall, the process of diagnosis appears to foster growth toward a more integrated identity.

Conclusions:

Findings from this review highlight both shared and condition-specific impacts on identity, highlighting a need for post-diagnostic support that acknowledges the identity-related impacts of diagnosis in both autism and ADHD. Current evidence largely reflects majority populations, highlighting a gap in understanding of how underserved groups, such as ethnic minorities, experience and negotiate identity after diagnosis. Clinicians should be aware of the need for community connection, self-acceptance, and informed decision-making about disclosure, and provide affirming, tailored care following diagnosis.

Community Brief

Why is this an important issue?

There is a rising increase in adults being diagnosed with autism or ADHD later in life, especially those from marginalized or underrepresented groups. Receiving a diagnosis as an adult can be both a relief and a challenge. It often leads people to rethink who they are, how they understand their past, and how they see their future. This process can be complex and emotional, with a huge impact on well-being. Learning more about this experience helps families, professionals, and communities better support those who receive a late diagnosis.

What is the purpose of the review?

We reviewed published studies to find all the available studies that may have looked into the process of identity changes in people who have been diagnosed as autistic or ADHD in adulthood. We wanted to understand how the diagnosis changes the way people see themselves and to identify what kind of support might help them after diagnosis.

What did the authors do to review the literature?

We designed a search method to find all the articles that discussed identity in adults following clinical autism and ADHD diagnoses. We searched multiple academic databases and the reference lists of the articles that were included in the review. 

What studies did the authors find?

Through a screening process, we found 25 sources about Autistic and ADHD experiences of identity following adulthood diagnosis. Twelve of these sources focused on the experiences of autistic individuals, and 13 of these focused on the experiences of ADHD individuals. We then did a thematic synthesis to describe key themes within the texts.

In summary, what did those studies show?

We found three overarching themes from the included literature as follows: Reconfiguring the self, Finding the self through others, and Emotional processing of the self. We found that after being diagnosed, people often rethought who they were, which was a complex process of making sense of past experiences and learning to accept themselves in a new way. Some found relief, but others felt uncertain or overwhelmed. Many described a mix of emotions, including grief, frustration, and empowerment. The diagnosis affected how people felt about their place in the world. Some felt more connected after finding communities, but many still struggled with feeling different or misunderstood. Deciding whether to tell others about their diagnosis was a complex process.

What are the remaining gaps in the literature?

The limited diversity of people in the included studies may influence the way we understand identity development in late-diagnosed autistic and ADHD adults and reduce how broadly these findings can be applied. More research is needed to explore how factors like cultural background, formal vs. self-diagnosis, and personal views on diagnosis shape identity. It is also important to include people from more marginalized and underrepresented groups, as autism and ADHD are still underdiagnosed in these communities, and they are therefore more likely to experience late diagnosis. Long-term studies are also needed to better understand how identity changes over time and how support needs may shift. 

Based on this review, what do the authors recommend?

We hope our review can lead to the development of better support for autistic and ADHD people in the time following their clinical diagnosis in adulthood. This support should be informed by research and consider the process of identity development from an intersectional lens. Future research and development of supports should be centered around the views and needs of the autistic and ADHD communities so they can improve the lives of people who are diagnosed in adulthood.