Exploring Lived Experiences of Receiving a Diagnosis of Autism in Adulthood: A Systematic Review

Background: Growing numbers of adults are seeking and receiving autism diagnoses. This systematic review collates, evaluates, and synthesizes evidence on the lived experiences of receiving a diagnosis of autism in adulthood.
Methods: A keyword-search was performed on six databases, with results systematically screened to identify relevant studies. Data extracted from the studies were analyzed using thematic synthesis. Results: Initial searches produced 12,785 articles, 26 of which were included and subjected to thematic synthesis. We identified two meta-themes: Constantly Struggling, related to (1) events that prompted diagnosis, (2) struggling to get a diagnosis, (3) haphazard supports, (4) costs of a late diagnosis, and (5) stigma; and Revelation, involving (1) emotional reactions to diagnosis, and (2) forging an autistic identity. Discussion: While diagnosis can grant understanding, acceptance, and community, autistic adults continue to struggle with stigma, regret, and inadequate support post-diagnosis. Understanding the first-person perspectives of those who have acquired an autism diagnosis in adulthood is vital in developing sensitive and effective assessment and support services for adults.