Doctoral Dissertation Research: Challenging Autism: The Neurodiversity and Alternative Biomedical Movements

博士论文研究：挑战自闭症：神经多样性和替代生物医学运动

• 批准号: 1636976
• 负责人: Peter Conrad
• 金额: $ 1.13万
• 依托单位: Brandeis University
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-07-01 至 2017-06-30
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=1636976&HistoricalAwards=false
• 关键词: Doctoral; Dissertation; Research; Challenging; Autism

SES-1636976Peter ConradCatherine TanBrandeis UniversityAutism Spectrum Disorders (ASD) is generally characterized as a developmental disability of unknown cause (potentially a combination of environmental, biological, and genetic risks) and with no sure cure or treatment. ASD is a divisive issue that has inspired the emergence of different movement groups of which the two major ones are the neurodiversity and alternative biomedical movements. Neurodiversity and alternative biomedical movement groups both challenge how researchers and medical professionals think about and approach ASD. The neurodiversity movement is primarily comprised of autistic self-advocating adults who argue that ASD is a brain difference, as opposed to disorder. Framing ASD as a social and cultural issue, neurodiversity advocates demand recognition, acceptance, and accommodation. The alternative biomedical movement, however, is dominated by parents of children with ASD. Alternative biomedical advocates contend that the condition is an immunological disorder triggered by environmental toxins, from which children can be recovered through various combinations of dietary changes, supplements, and alternative therapies (e.g., hyperbaric oxygen therapy, helminths, and ionic detoxification foot baths). This research studies neurodiversity and alternative biomedical advocates, to better understand how experiences with ASD influence health social movement participation, shape beliefs about ASD, and orient challenges against the dominant paradigm. This study seeks to understand how advocates of these two groups experience, think about, and subsequently, approach ASD. The project will also offer insights into issues important to the improvement of social and healthcare services for autistic adults (such as access to safe housing, employment, and support services), and to understanding immunization non-participation and alternative medicine use in ASD-related care. This study focuses on three areas of inquiry: experiences with a medicalized condition, knowledge and expertise, and health social movements. Extant sociological literature on experience of illness often privileges the perspectives of "sick" or suffering individuals, but have under-explored (i) caretakers with highly involved and indefinite commitments to "sick" individuals and (ii) diagnosed individuals who reject their medicalized statuses. Comparing neurodiversity and alternative biomedical advocates' pluralistic experiences with ASD enables deeper understanding of movement identification, ASD beliefs, and movement goals. Furthermore, the researchers will examine the processes through which movement groups and advocates develop their own specialized knowledge on ASD. This knowledge can compete with and challenge mainstream paradigms, therefore the researchers will identify the strategies advocates employ to expand and preserve neurodiversity and alternative biomedical fields of expertise. The study implements qualitative methods that will include observations of neurodiversity and alternative biomedical events, in-depth interviews with advocates, and textual analysis of materials issued by and written about the movement groups. These research methodologies aim to address the following questions: How do advocates come to participate in and adopt movement agendas? How do movement advocates frame their opposition against mainstream scientists and medical professionals? And, within their movement groups, how do advocates generate knowledge about ASD?

SES-1636976 Peter Conrad Catherine TanBrandeis UniversityASD通常被描述为一种原因不明的发育障碍（可能是环境、生物和遗传风险的组合），并且没有确定的治愈或治疗方法。 ASD是一个分裂的问题，激发了不同运动团体的出现，其中两个主要的是神经多样性和替代生物医学运动。 神经多样性和替代生物医学运动团体都对研究人员和医疗专业人员如何思考和对待自闭症谱系障碍提出了挑战。 神经多样性运动主要由自闭症自我鼓吹的成年人组成，他们认为ASD是一种大脑差异，而不是障碍。 将ASD视为一个社会和文化问题，神经多样性倡导者要求承认，接受和适应。然而，替代生物医学运动是由自闭症儿童的父母主导的。替代生物医学倡导者认为，这种情况是由环境毒素引发的免疫紊乱，儿童可以通过饮食改变、补充剂和替代疗法的各种组合（例如，高压氧疗法、蠕虫和离子解毒足浴）。本研究研究神经多样性和替代生物医学倡导者，以更好地了解ASD的经验如何影响健康社会运动的参与，塑造对ASD的信念，并针对主导范式提出挑战。本研究旨在了解这两个群体的倡导者如何体验，思考并随后接近ASD。该项目还将深入了解对改善自闭症成年人的社会和医疗保健服务（如获得安全住房，就业和支持服务）以及了解免疫接种不参与和替代医学在ASD相关护理中的使用至关重要的问题。这项研究的重点是三个领域的调查：经验与医疗条件，知识和专业知识，健康的社会运动。现存的社会学文献的经验，疾病往往特权的角度来看，“生病”或痛苦的个人，但未充分探讨（一）照顾者高度参与和不确定的承诺，“生病”的个人和（ii）诊断的个人谁拒绝他们的医疗地位。比较神经多样性和替代生物医学倡导者与ASD的多元经验，可以更深入地了解运动识别，ASD信念和运动目标。此外，研究人员将研究运动团体和倡导者发展自己的ASD专业知识的过程。这些知识可以与主流范式竞争和挑战，因此研究人员将确定倡导者采用的策略，以扩大和保护神经多样性和替代生物医学领域的专业知识。该研究采用定性方法，包括观察神经多样性和替代生物医学事件，深入采访倡导者，并对运动团体发布和撰写的材料进行文本分析。 这些研究方法旨在解决以下问题：倡导者如何参与并通过运动议程？运动倡导者如何反对主流科学家和医学专业人士？而且，在他们的运动团体中，倡导者如何产生关于ASD的知识？