ERIC Number: EJ1426569
Record Type: Journal
Publication Date: 2024-Jun
Pages: 12
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: EISSN-1461-7005
"I'm Dealing with a Health Care System That Doesn't Get It": Barriers and Facilitators to Inclusive Healthcare for Autistic Adults
Kiley J. McLean; Meghan Haas; Jamie Koenig; Megan Horvath; Mariah Vigil; Nicole E. Werner; Lauren Bishop
Autism: The International Journal of Research and Practice, v28 n6 p1382-1393 2024
Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56 years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults.
Descriptors: Access to Health Care, Adults, Autism Spectrum Disorders, Barriers, Affordances, Individual Characteristics
SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://bibliotheek.ehb.be:2993
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (DHHS/NIH); National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH); National Institute of Mental Health (NIMH) (DHHS/NIH); US Department of Health and Human Services
Authoring Institution: N/A
Grant or Contract Numbers: P50HD105353; U54HD090256; UL1TR002373; KL2TR002374; KL2TR000428; R01MH132218; UT6MC45902; UT2MC39440