Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults

Abstract

One in 68 Americans has autism spectrum disorder (ASD), and diagnosis is often delayed into adulthood in individuals without comorbid intellectual disability. Many undiagnosed adults resort to self-diagnosis. The purpose of this descriptive phenomenology was to explore the experience of realizing a self-diagnosis of ASD among 37 individuals who were not formally diagnosed. Results revealed five themes: feeling “othered,” managing self doubt, sense of belonging, understanding myself, and questioning the need for formal diagnosis. Healthcare professionals must have an understanding of self-diagnosis to help individuals transition to formal diagnosis and to adequately educate, support, and screen this population for comorbidities.