Autism is a lifelong developmental disability that impacts individuals’ communication and interactions with the world (National Autistic Society, n.d.). Unfortunately, individuals with autism also face adverse health outcomes, with the UK government reporting a 16-year mean life expectancy reduction in autistic individuals (HM Government, 2021). Barriers to healthcare for autistic people may contribute to these negative outcomes. Research by Doherty et al. (2022) found that a third of autistic individuals did not seek medical treatment for potentially life-threatening conditions.
In an effort to understand these barriers, Shaw et al. (2023) conducted a qualitative study exploring the experiences of healthcare barriers and adverse outcomes for autistic adults. Using thematic analysis, they uncovered five main themes: early barriers, communication mismatch, doubt, helplessness and fear, and healthcare avoidance leading to adverse health outcomes. The researchers found that an overarching meta-theme of “epistemic injustice” connected these themes, with respondents feeling reduced to a singular label of autism in healthcare settings.
The researchers developed an explanatory model based on these themes, suggesting that the predictability and routine that autistic individuals rely on clash with the unpredictable and overstimulating nature of seeking healthcare. Communication mismatches, stemming from differences in sensory perception and masking behaviors, also contribute to barriers in accessing healthcare. Negative experiences with healthcare providers lead to feelings of helplessness and eventually healthcare avoidance, resulting in potentially life-threatening outcomes.
Shaw and colleagues propose the concept of a “triple empathy problem” in healthcare, highlighting the communication difficulties between autistic individuals and neurotypical doctors. They argue for the importance of addressing these barriers to ensure better healthcare outcomes for autistic individuals.
Strengths of the study include the inclusion of autistic adults on the research team, providing insider insights, and the use of an online survey for accessibility and a large sample size. However, limitations include potential loss of individual voices with a survey approach and self-reported healthcare outcomes.
Practical implications of the study suggest the need for healthcare providers to adopt a framework like Autistic SPACE, designed to meet the unique needs of autistic individuals. This framework emphasizes sensory considerations, predictability, accommodations, communication strategies, and empowerment for autistic patients in healthcare settings (Doherty et al., 2023). By addressing these barriers and improving communication, healthcare providers can better serve the healthcare needs of autistic individuals.
