In the study titled "Autistic Adults' Experiences of Diagnosis Disclosure," researchers examined the experiences of autistic adults when disclosing their autism diagnosis in various contexts. The study involved 393 participants aged 17 to 83 years from two longitudinal surveys. Most participants had disclosed their diagnosis to someone, most commonly to friends. However, a significant minority of participants studying and/or working at the time had not disclosed to their education provider or employer.
The study found that participants desired understanding and support from disclosure but feared prejudice. While some received support, others encountered dismissiveness and misunderstanding. The main reasons for disclosure were to help others understand them and to seek support. Participants used disclosure to explain their differences and alert others to their support needs, especially in situations where autism might interfere with relationships or work demands. Common reasons against disclosure included avoiding misunderstanding and prejudice, lack of relevance or necessity, and not wanting to be labeled.
Participants described a variety of consequences following disclosure. Positive outcomes included understanding and acceptance, professional or social support, and improved relationships. Negative outcomes included dismissiveness, negative judgment, and misunderstanding. Some participants reported that others did not treat them differently after disclosure, either because they already suspected autism or disregarded the diagnosis altogether.
The study highlights the need to improve autism understanding and reduce stigma within and beyond educational and employment contexts. It also emphasizes the importance of knowledge, support, and stigma reduction measures for increasing the net benefit of disclosure in workplaces, higher education, and the wider community.
Huang, Y., Hwang, Y. I., Arnold, S. R. C., Lawson, L. P., Richdale, A. L., & Trollor, J. N. (2022). Autistic adults' experiences of diagnosis disclosure. Journal of Autism and Developmental Disorders, 52(5301-5307).