Barriers to Care for Autistic Adults: A Qualitative Study Understood Through the Double Empathy Framework

Communication challenges between autistic and neurotypical individuals often stem from fundamental differences in social cognition and expectations. These challenges are particularly impactful in contexts requiring collaboration and mutual understanding, such as healthcare settings. The double empathy phenomenon suggests the miscommunication in autistic-neurotypical pairs can be bidirectional. In healthcare settings, how autistic adults navigate cross-neurotype interactions with non-autistic clinicians is not well understood. The current study used Directed Content Analysis to qualitatively examine 118 autistic adults’ experiences with receiving a formal diagnosis and accessing support (e.g., therapy, accommodations). The results indicated that discrimination was a recurring barrier that prevented autistic adults from fully harnessing desired benefits from diagnosis (e.g., gaining access to resources, improving relationships, identity), therapy (e.g., goal-aligned therapy to support emotion regulation, advocacy, relationship boundaries, trauma), and accommodations (e.g., supporting emotional, social and sensory needs). These findings provide insights into how stakeholders can provide neurodivergent-affirming care and other universal design adaptations in school and work environments.