Autistic Adults’ Experiences Seeking and Receiving Support for Mental Health and Suicidal Thoughts and Behavior

Abstract

Background: Autistic adults have a high incidence of mental health challenges, including suicidal thoughts and behavior (STB). Our objective was to gain a nuanced understanding of autistic adults’ experiences in seeking and receiving support for their mental health, including STB, presented in a format that could be operationalized to improve service provision for autistic adults. Methods: We applied an integrated codesign approach involving autistic adults at every stage of the research, acknowledging them as experts on their own lives. Thirty-three autistic adults with a history of STB participated in semi-structured narrative interviews, discussing their experiences seeking and receiving support for their mental health. We analyzed data using reflexive thematic analysis. Results: We constructed an overarching theme, “We Don’t Know What We Don’t Know,” representing the bidirectional misunderstandings that occur between health care providers and autistic people. Within the overarching theme were four central themes: (1) Communicate with Me (understanding the uniqueness of autistic communication); (2) Understand Me (developing a nuanced understanding of autism and being autistic); (3) Help Me to Understand Myself (developing self-understanding); and (4) Support Me (empowerment when supported). We constructed an underpinning theme, “Trust and Safety,” representing the need for psychological safety in all domains of mental health care. We centered the lived experiences of autistic adults to acknowledge the need for autistic people to feel safe and for service providers to build trust to effectively support the mental health of autistic adults. Conclusions: Our analysis demonstrates the need to facilitate access to mental health care and improve the quality and effectiveness of service utilization for autistic adults. Recommendations include improving understanding of and communication with autistic people, embedding education, cultural humility, and psychological safety, acknowledging power imbalances, adapting interventions, and validating autistic experience. Our thematic map serves as a framework to inform and improve health care services for autistic people.