"Who Am I": The Self-Identity Journey of Autistic Adults
How do adults on the Autistic Spectrum perceive their self-identity, and how does this perception integrate with a formal diagnosis? This is an important question at the heart of a new study, which offers an in-depth look into the complex process of forming an autistic identity in adulthood.
The study, published in the Int J Qual Stud Health Well-being, 2026 Dec 31, aimed to examine factors shaping the self-identification process among adults who define themselves as autistic. It also explored the relationship between self-identification and formal diagnosis - whether self-identification is sufficient on its own, or if it serves as a transitional stage on the way to a formal diagnosis.
For the study, 12 adults from the United Kingdom participated. Participants were divided into two groups: six adults who identified as autistic without a formal diagnosis, and six adults who identified as autistic and also had a formal diagnosis. Data was collected through online focus groups and analyzed using a thematic approach.
Key Findings: A Dynamic and Personal Process
The findings indicate that self-identification as an autistic person is a dynamic and context-dependent process. It is influenced by long-term life experiences of difference, Camouflaging (Masking), lack of understanding from the environment, and structural barriers to diagnosis. For some participants, self-identification served as a sufficient and complete identity position. They felt that self-recognition of their identity was enough for them, without the need for formal recognition.
In contrast, for other participants, self-identification served as a catalyst for pursuing a formal diagnosis. The purpose of diagnosis in these cases was to receive external validation of their identity, or access to dedicated support and resources that could improve their quality of life. The study also found that identity development and co-occurring mental health conditions interact reciprocally, meaning they influence each other.
Implications for Autistic Adults in Israel
The study's findings emphasize that self-identification does not replace a formal diagnosis, but rather exists in a complex and context-sensitive reciprocal relationship with it. For adults on the spectrum in Israel, these insights are particularly important. They highlight the importance of recognizing the unique life experiences of each autistic person, and the possibility of different paths to identity formation and self-recognition.
The researchers recommend integrating identity-oriented discourse into assessment and diagnostic processes, with a deep understanding of the person's individual experiences. Such an approach could improve person-centered practice and ensure that diagnostic and support processes are more sensitive to the needs and personal journey of each individual.
It is important to remember that this is a qualitative study based on a small focus group in the United Kingdom. Its findings provide an important glimpse into the inner world of autistic adults, but do not necessarily reflect the experience of the entire autistic population. Nevertheless, they offer important points for thought and discussion, and call for continued research into the complex relationship between self-identity and diagnosis in the autistic world.