Brighton and Sussex Medical School, UK.
Michigan State University, USA.
Autism. 2024 Jul;28(7):1746-1757. doi: 10.1177/13623613231205629. Epub 2023 Oct 17.
Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth.
自闭症患者比非自闭症患者更容易出现精神和身体健康问题，平均寿命也更短。尽管人们普遍致力于解决这些问题，但自闭症患者在获得医疗保健方面仍然面临各种障碍。本文旨在从自闭症患者的角度深入探讨这一领域。这项研究的优势在于由自闭症患者领导，为自闭症患者服务——所有研究人员都是自闭症患者，我们大多数人也是医生。作为一项大型调查的一部分，以书面意见和故事的形式收集了数据。在这里，我们探讨了这些常见主题和经验中可能存在的更深层次的意义。参与调查的人报告了各种各样的障碍。在这里，我们用他们自己的话来表达他们的故事。主题包括：早期障碍；沟通不匹配；对自己和医生的怀疑；无助和恐惧；以及回避医疗保健和不良健康结果。我们的研究结果使我们能够创建一个模型，旨在根据先前已知的后果来理解和解释报告的障碍。我们还借鉴了更广泛的自闭症理论，更深入地解释我们的发现。
