Barriers to healthcare predict reduced health-related quality of life in autistic adults without intellectual disability
Authors: David Nicole , Rahlff Pascal , König Hannah , Dückert Sophia , Gewohn Petia , Erik Frank , Vogeley Kai , Schöttle Daniel , Konnopka Alexander , Schulz Holger , Peth Judith 
Published: September 2024

Autistic adults frequently show increased physical or mental health conditions and impairments in social, occupational, and other life domains. Accordingly, they often report reduced health-related quality of life. Yet, numerous barriers prevent effective healthcare for autistic adults. To date, the impact of healthcare barriers on health-related quality of life in autism has not been investigated. We, thus, sought to investigate the health-related quality of life of autistic adults without intellectual disability in Germany and analyze previously reported and novel predictors of health-related quality of life including healthcare barriers using multiple linear regression. Within a nationwide online survey, 311 autistic adults completed the Short-Form Health Survey and the Barriers to Healthcare Checklist. Demographic, clinical, and healthcare-related predictors were also assessed. Participants showed below-average mental and significantly reduced physical health-related quality of life compared to a German normative sample. Several independent variables differentially predicted mental and physical health-related quality of life. Healthcare barriers resulted as the only predictor, which explained variations in both domains: the more barriers autistic adults experienced, the lower their mental and physical health-related quality of life. Barriers emerged as the strongest predictor for mental health-related quality of life. Our results raise awareness for the barriers autistic adults experience in getting appropriate healthcare and the possible consequences for the individual. Improved healthcare access might contribute to better health-related quality of life in autism. Lay abstract Health-related quality of life reflects a person’s perspective on their well-being in physical, mental, social, work-related, and other aspects of health or life. Autistic adults typically report difficulties in many or all of these domains and, thus, often experience their health-related quality of life being reduced. Nonetheless, they do not obtain the professional support they need and report barriers to accessing or receiving appropriate healthcare. We know little about the impact of barriers to healthcare on health-related quality of life in autistic adults. In the present study, 311 autistic adults without intellectual disability in Germany completed an online survey on their current health-related quality of life and the number of barriers to healthcare they experience. In addition, they were asked about their personal and clinical background as well as about the amount of healthcare and support they recently received. We investigated how this information and, particularly, barriers to healthcare explained variations in individual levels of health-related quality of life. We found that barriers to healthcare, compared to most other variables, were a strong predictor of health-related quality of life: The more barriers autistic adults reported, the lower their experienced psychological and physical well-being. To our knowledge, this is the first paper to examine the relationship between barriers to healthcare and health-related quality of life in autism. Our results suggest that healthcare providers need to become aware of the barriers individuals with autism have in seeking and getting healthcare. Improved access to services might contribute to better health-related quality of life in autistic adults.