A Diagnosis Buried in the Closet: How Autistic People Learn of Their Autism Diagnoses
Dakyeom Lee, Insuk Ryu, Joonheon Kwon, wn-ho Yoon, Hee Jeong Yoo, So Yoon KimBackground:
Learning that one is autistic can be a pivotal turning point in self-understanding, but autistic people learn of this information under highly variable conditions. How these disclosure conditions shape autistic people’s experiences of learning and making sense of the diagnosis remains underexamined, particularly for those who received an autism diagnosis in childhood but learned about it later, and in non-Western contexts.
Methods:
We conducted semi-structured qualitative interviews with 22 formally diagnosed autistic adults in South Korea from two diagnostic pathways (11 self-initiated diagnosis in adolescence/adulthood; 11 received a childhood diagnosis and learned about it later). Among participants who received a childhood diagnosis, disclosure conditions varied, with some receiving direct disclosure and others learning about the diagnosis unexpectedly (e.g., through records hidden in the closet). We conducted one-on-one interviews and analyzed the data using reflexive thematic analysis.
Results:
The analysis suggested that core themes transcended diagnostic pathways. Participants described learning of the diagnosis as an identity-relevant turning point marked by mixed emotions, shifting from self-blame toward more coherent self-understanding while also experiencing grief about time spent not knowing. Disclosure contexts, including epistemic positioning, interpretive support for connecting the medical label to everyday life, and prior understanding of autism, shaped whether the diagnosis became valuable self-knowledge or a source of stigma. Participants’ accounts indicated that supportive disclosure involves framing autism without stigma or idealization, balancing timing with stigma risk and developmental readiness, prioritizing trust and rapport, and providing follow-up support.
Conclusion:
The findings highlight the importance of autistic people knowing their diagnosis to support positive, self-determined identity development, as well as directly disclosing the diagnosis as information autistic people are entitled to know. We need more efforts to develop neuro-affirming training for parents and professionals to share a diagnosis in ways that support self-understanding, alongside broader stigma-reduction efforts in South Korea.