Social-cultural perspectives on diagnosis: autism as a case study

诊断通常被理解为将症状与疾病、失调或疾病相匹配的医疗过程。为了有效，诊断需要截断点或阈值，据此可以确定个人是生病还是健康，患病还是健康，残疾还是没有。医学社会学家对诊断类别与他们的病情理所当然的契合提出了质疑，相反，他们认为这些诊断类别是由更广泛的社会力量和相互作用形成的社会框架和塑造的（Brown, 1995; Jutel, 2011）。因此，诊断虽然通常被认为是一种医学或临床活动，但不能与人类机构和审议的更广泛影响分开（Jutel, 2011）。虽然临床医生在很大程度上负责诊断，并将一种疾病标记为一种或另一种，但诊断过程本身就是一种互动。前来诊断的人往往是自己行为方面的专家；文化和医学对一种特殊疾病的理解融合在一起，因为外行人塑造了大众对这种疾病的想象，而临床医生则找到了以这种或那种方式对症状进行分类的方法。诊断本身，以及患者和家属如何解读诊断，为疾病和障碍创造了意义，同时也提供了一种管理这种障碍的机制。ESRC奖学金将探讨临床医生如何在二级护理中对自闭症做出诊断决定，并考虑患者对诊断决定的理解及其对家庭的影响。当在社交沟通和社交互动中存在持续的困难模式，并伴有受限和重复的行为、兴趣或活动模式时，就可以诊断为自闭症（APA, 2013）。自闭症的症状被认为是多种多样的，严重程度也很广泛，这意味着决定诊断阈值在哪里可能是具有挑战性的。近年来，自闭症患病率急剧上升，从1966年2000年的略高于1% （Lotter, 1966）上升到约占人口的1.1%至1.2% （Brugha et al., 2012; Sadler et al., 2017）。尽管神经科学取得了进步，基因研究也取得了重大进展，但我们仍然不了解自闭症的潜在原因，而且这种情况还不能通过任何明确的生物标志物（如血液、尿液或基因检测）来诊断（Klin等人，2000；Vllasaliu等人，2016）。这些因素使自闭症成为更广泛的诊断检查的一个有趣的案例研究。我感兴趣的是临床医生如何在“正常”和“病理”之间划清界限，以及这对患者和家属意味着什么。虽然我的博士研究侧重于临床决策，但拟议的ESRC奖学金将把研究结果扩展到更普遍的诊断角度。这将有助于我参与合作生产和参与医疗保健研究的关键领域，并将我的研究传播给那些可能无法访问它的人。我提议的奖学金有两个主要目的：a)使我能够根据我的博士研究提供高影响力的产出；b)制定计划，在我的博士研究学习和我未来的研究事业之间建立桥梁。a)我打算巩固我的博士研究成果，并想办法将它们传播给更广泛的受众。这将包括为学术期刊撰写文章；促进与临床医生和患者的知识交流讲习班；塑造创造性的非学术产出，包括一部动画短片和一篇在线文章。b)我打算从事网络和专业发展，这将有助于在我的博士学位和未来的研究生涯之间架起一座桥梁。这一目标的核心将是向惠康信托基金会申请一项为期三年的奖学金。此外，我将在会议上展示我的研究；在自己的研究部门和更远的地方建立网络；并进行适当的培训。

Diagnosis is commonly understood to be a medical process that matches symptoms to disease, disorder or illness. To be effective, diagnosis requires cut-off points, or thresholds, whereby individuals can be identified as ill or well, diseased or healthy, disabled or not. Medical sociologists have challenged the taken-for-granted fit of diagnostic categories to their conditions and instead consider them as socially framed and shaped by wider social forces and interaction (Brown, 1995; Jutel, 2011). Diagnosis, therefore, whilst generally considered to be a medical or clinical activity, cannot be separated from wider influences of human agency and deliberation (Jutel, 2011). Whilst clinicians are, for the most part, responsible for diagnosis and for the labelling of a condition as one thing or another, the process of diagnosis itself is an interaction. People coming for diagnosis are often experts in their own behaviours; cultural and medical understandings of a particular condition merge as lay people shape how that condition is seen in the popular imagination, and clinicians find ways to categorise symptoms one way or another. Diagnosis itself, and how patients and families interpret the diagnosis, creates meaning around disease and disorder, as well as providing a mechanism for managing that disorder. The ESRC Fellowship will explore how clinicians make diagnostic decisions about autism in secondary care and consider patients' understanding of the diagnostic decision and impact on their families. Autism is diagnosed when there are persistent patterns of difficulty in social communication and social interaction, combined with restricted and repetitive patterns of behaviour, interests or activities (APA, 2013). Symptoms of autism are considered to be diverse and wide-ranging in severity, meaning that decisions about where the diagnostic threshold lies can be challenging. Prevalence rates for autism have increased dramatically in recent years from just over 1 in 2000 in 1966 (Lotter, 1966) to about 1.1% to 1.2% of the population (Brugha et al., 2012; Sadler et al., 2017). Despite neuroscientific advances and significant genetic research, we still do not understand the underlying causes of autism, and the condition cannot yet be diagnosed by any clear biomarker such as a blood, urine or genetic test (Klin et al., 2000; Vllasaliu et al., 2016). These factors make autism an interesting case study for the examination of diagnosis more broadly.I am interested in where clinicians draw the line between 'normality' and 'pathology' and what that means for patients and families. Whilst my PhD studies have focussed on clinical decision-making, the proposed ESRC Fellowship will extend the findings into lay perspectives on diagnosis more generally. This will help me to engage in key areas of interest in co-production and participant involvement in healthcare research as well as disseminate my research to people who might not otherwise access it. There are two main aims of my proposed Fellowship: a) to enable me to deliver high impact outputs based on my PhD research; and b) to develop initiatives which build a bridge between my PhD research study and my future research career. a) I intend to consolidate the results of my PhD studies, and find ways to disseminate them to a broad audience. This will include writing articles for academic journals; facilitating knowledge-exchange workshops with clinicians and patients; and shaping creative non-academic outputs which will include a short animated film and an online article. b) I intend to engage in networking and professional development which will help to provide a bridge between my PhD and future research career. The core of this aim will be to write an application to the Wellcome Trust for a three-year Fellowship. In addition, I will present my research at conferences; engage in networking within my own research departments and further afield; and undertake appropriate training.