Strengthening Qualitative Research Through Methodological Innovation and Integration: Networks of Expertise and the Autism Spectrum

标题：通过方法创新和整合加强定性研究：专业知识网络和自闭症谱系首席研究员：吉尔·艾尔机构：哥伦比亚大学在过去的10年里，美国自闭症谱系障碍的诊断数量呈指数级增长。 为什么会发生这种情况？ 这个研究项目的出发点是，到目前为止，对解释的探索一直受到生物原因（因此是“真实的”）和社会原因（因此是“人为的”）之间站不住脚的对立的阻碍。相反，它建议将自闭症作为一种生物社会现象进行研究，这是由复杂的反馈回路引起的，一方面，我们如何思考，分类，治疗和机构处理自闭症患者，另一方面，这些人如何对他们的治疗做出反应。 主要的一点是，我们需要以不同的方式思考专业知识。 生物学方法认为专业知识是从外部描述和解释自闭症流行病。 社会方法认为专业知识是孤独症的“构建”。 但在自闭症的情况下，将专业知识视为分布在网络中更为现实，因为患者和父母已经成为“外行专家”，对如何看待和治疗这种疾病有相当大的投入。 为了研究这种复杂的网络和反馈回路，研究人员正在对诊断和治疗自闭症的诊所和学校进行民族志参与者观察。 研究人员还采访了父母、患者、专家和倡导者。拟议活动的更广泛影响有望使人们对目前自闭症诊断的流行以及如何解决这一问题有更清晰的认识。自闭症很可能在未来被证明是一个重大的社会问题，这项研究的主要目的是强调，在多大程度上，这不仅是一种生物学上的状况，这是一个关于社会成员标准的深刻的伦理和经济问题，在我们这个时代，比以往任何时候都更成为一个有意识的人类选择问题。

Title:Strengthening Qualitative Research Through Methodological Innovation and Integration: Networks of Expertise and the Autism SpectrumPrincipal Investigator: Gil EyalInstitution: Columbia UniversityThe number of autism spectrum disorders diagnoses in the U.S. has risen exponentially over the last 10 years. Why has this happened? This research project begins from the sense that the search for explanation has up till now been impeded by an untenable opposition between biological (therefore "real") and social (therefore "artificial") causes. Instead, it proposes to examine autism as a bio-social phenomenon, caused by complex feedback loops between, on the one hand, how we think about, classify, treat and institutionally process individuals with autism, and on the other hand, how these individuals react to their treatment. The main point is that we need to think differently about expertise. The biological approach thinks of expertise as describing and explaining the autism epidemic from the outside. The social approach thinks of expertise as "constructing" autism all by itself. But in the case of autism it is much more realistic to think of expertise as distributed in a network, since patients and parents have become "lay experts" with considerable input on how the disorder is viewed and treated. To study such complex networks and feedback loops, the researchers are conducting ethnographic participant observations in clinics and schools where diagnosis and treatment of autism takes place. The researchers also interview parents, patients, experts and advocates. The broader impact of the proposed activity would hopefully be a greater clarity of vision about the current epidemic of autism diagnoses and how to address it. Autism is likely to prove a major social problem in the future, and it is already changing the nature of schooling in the U.S. The main thrust of the proposed research is to highlight the extent to which what is at stake is neither simply a biological condition for which a cure may or may not be found, nor a social construction which can be dispatched by being unmasked, but a deep ethical and economic question about the criteria of membership in society, which in our era, more than any previous times, have become a matter of conscious human choice.