The antecedents, challenges and benefits of an autism self-diagnosis.

Abstract

Background: An increasing number of adults are self-diagnosing with autism spectrum disorder. While this may be a first step to obtaining a formal diagnosis, little is known about the motivations behind self-diagnosis or whether individuals pursue a formal diagnosis.

Aims: The study sought to determine why individuals come to regard themselves as autistic, their experiences of seeking a diagnosis and whether self-diagnosis has benefits.

Methods: This study collected data from 130 self-diagnosed adults who had not yet obtained a formal diagnosis. Questionnaire responses and free-text comments were analysed using qualitative content analysis.

Results: Initial motivation for self-diagnosis stemmed from encouragement from friends, family or identifying with traits exhibited by autistic celebrities. Most participants desired a formal diagnosis, but lengthy waiting lists and perceived inadequacies in healthcare were significant deterrents. Participants reported that self-diagnosis was largely positive, facilitating occupational and educational adaptations and fostering personal compassion. Ten per cent of participants did not wish to pursue a formal diagnosis, though many who desired a diagnosis faced obstacles in securing one.

Conclusion: The study's findings provide insight into the process of self-diagnosis, including how individuals arrive at a self-diagnosis and whether they subsequently pursue a formal diagnosis.