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

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.

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.

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.

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.