University of Antwerp & KU Leuven, Antwerp, Belgium.
Dev Med Child Neurol. 2019 Sep;61(9):1025-1029. doi: 10.1111/dmcn.14278. Epub 2019 Jun 17.
Autism is a polysemous concept. It is defined as a neurodevelopmental disorder that is diagnosed based on an assessment of behaviour and dysfunction. Autism also refers to a specific way of information or sensorial processing. For those diagnosed with autism, it is a real and shared experience. In this paper, I sketch the moral work that biological conceptions of autism perform. They help to conceptualize the diagnosis and associated challenges as real and they remove some of the blame from the diagnosed person and/or their parents. But such approaches also risk neglecting the role of behaviour as a meaningful reaction to experiences. In thinking about the ethics of autism research, diagnosis of autism, and autism care, the recent findings of epigenetics and systems biology may help us overcome the dichotomy between biology and psyche, and point the way to a more nuanced and ethical view. WHAT THIS PAPER ADDS: The meaning of 'autism' has different layers and as such autism is a polysemous concept. The lived experience of autistic people matters in research.
自闭症是一个多义词。它被定义为一种神经发育障碍，根据行为和功能障碍的评估进行诊断。自闭症也指一种特定的信息或感觉处理方式。对于那些被诊断为自闭症的人来说，这是一种真实而共同的体验。在本文中，我勾勒了自闭症的生物学概念所发挥的道德作用。它们有助于将自闭症的诊断和相关挑战概念化，使其变得真实，并将一些责任从被诊断的人及其父母身上转移开。但是，这种方法也有可能忽视行为作为对经历的有意义反应的作用。在思考自闭症研究、自闭症诊断和自闭症护理的伦理问题时，最近的表观遗传学和系统生物学发现可能有助于我们克服生物学和心理之间的二分法，并为更细致入微和更符合伦理的观点指明方向。本文的贡献在于：“自闭症”的含义有不同的层面，因此自闭症是一个多义词。自闭症患者的生活体验在研究中很重要。
