Although the benefits of diagnosis disclosure have been recognized for a number of pediatric medical conditions, there is a paucity of research about the process by which youth with autism spectrum disorder (ASD) are informed about their diagnosis. The aim of this study was to systematically characterize the antecedents, correlates, and outcomes of diagnosis disclosure to youth with ASD.
In this cross-sectional study, parents and guardians of youth with ASD (ages 8–25) completed a detailed online questionnaire about their experiences with diagnosis disclosure. The perceived impact of disclosure on affected youth was also assessed.
Five hundred seventy-five parents of youth with ASD (mean age: 14 years) completed the questionnaire, of whom 81% reported their affected child had been told that he or she had ASD. Most youth who had been told about their diagnosis (86%) were currently aware that they had ASD, according to the parent report. Youth awareness of the diagnosis was reported to be associated with improved self-advocacy skills (60%), enhanced self-awareness of personal strengths (69%) and weaknesses (68%), and other benefits. Youth who had sought information about ASD from support groups and other individuals with ASD had better outcomes regarding self-esteem [adjusted odds ratio = 2.73, 95% confidence interval: (1.34, 3.98)] and acceptance of the diagnosis (p = 0.001) than those who exclusively learned about ASD from other sources.
Given the numerous potential benefits of diagnosis disclosure, there is a need for physicians and other professionals to support parents in educating youth with ASD about their diagnosis.