Adults on the Autism Spectrum Face Significant Challenges Accessing Health Care Services

  •  Setareh Ghahari    
  •  Megan Widmer    
  •  Tom Heneghan    
  •  Methuna Naganathan    
  •  Thanusha Kathiravel    


Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by difficulties with social skills, verbal and non-verbal communication, repetitive behaviours and atypical sensory processing. Individuals on the autism spectrum face a higher prevalence of health conditions and have a higher mortality rate than the general population. There is a critical need to understand adults’ experiences on the autism spectrum when accessing health care services to understand how to improve accessibility to health care for these individuals. The purpose of this scoping review was to investigate how adults on the autism spectrum access and experience health care services. Four databases, including Embase, MEDLINE, CINAHL, and PsycInfo, were systematically searched for literature exploring how individuals on the autism spectrum access and experience health care. Results were extracted and categorized into five determinants based on the accessibility framework described by Levesque et al. (2013). Results indicated adults on the autism spectrum experience numerous barriers when accessing health care services. The dimension of access most frequently cited was the appropriateness of care, followed by the acceptability of care. It is essential to explore access as it is often conceptualized as the availability and affordability of services; however, results of this study indicate the broader experience of quality care provision and acceptance of the individual are important in understanding the complex experience individuals on the autism spectrum face. Based on these findings, there is a need to provide comprehensive education and clinical practice guidelines for health care providers to help reduce barriers to providing appropriate care for adults on the autism spectrum. Efforts to destigmatize intrapersonal and extra-personal perceptions of individuals on the autism spectrum will help overcome the barriers that affect care acceptability. Further research must understand how to design and implement strategies to maximize health service access for adults on the autism spectrum.

This work is licensed under a Creative Commons Attribution 4.0 License.