Brandeis University, United States.
Soc Sci Med. 2018 Jan;197:161-167. doi: 10.1016/j.socscimed.2017.12.008. Epub 2017 Dec 9.
Building on Michael Bury's "biographical disruption" and Kathy Charmaz's "loss of self," which describe the deteriorative impacts of chronic illness on perceptions of selfhood, I propose "biographical illumination"-a transformed conceptualization of self and identity that is facilitated by but extends beyond medical meaning, enriching personal biography and social relationships. The concept is perhaps most applicable to experiences with neurological and neurodevelopmental conditions in which brain difference and personhood are perceived to be closely intertwined. In this study, biographical illumination is used to describe the experiences of autistic adults who learned of their Autism Spectrum Disorder (ASD) diagnosis during teen years or adulthood. Through an ASD lens, participants found explanation for their atypicality and developed a more valued self-concept. Learning of the condition did not disrupt their biography; rather, it became integral to and constitutive of it. With a new self-concept, participants re-gauged personal expectations for normalization and accessed communities of alike others, forging relationships that affirmed identity.
基于迈克尔·伯里的“传记性中断”和凯西·查马兹的“自我丧失”,我提出了“传记性照亮”——一种自我和身份的概念化转变,它通过但超越医学意义而得到促进,丰富了个人传记和社会关系。这个概念也许最适用于神经和神经发育状况的体验,在这些体验中,大脑差异和人格被认为是紧密交织的。在这项研究中,传记性照亮被用来描述在青少年或成年时期得知自己患有自闭症谱系障碍(ASD)的成年自闭症患者的经历。通过自闭症的视角,参与者为自己的非典型性找到了解释,并发展出更有价值的自我概念。得知这种情况并没有打乱他们的生活;相反,它成为了生活的重要组成部分。有了新的自我概念,参与者重新调整了个人对正常化的期望,并接触到了类似的他人社区,建立了肯定身份的关系。