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

自闭症谱系障碍（ASD）通常被认为是一种未知原因的发育障碍（可能是环境、生物和遗传风险的结合），没有确定的治愈或治疗方法。自闭症谱系障碍是一个有争议的问题，它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运动和另类生物医学运动。神经多样性和另类生物医学运动团体都挑战了研究人员和医学专业人员对自闭症的看法和方法。神经多样性运动主要由自闭的成年人组成，他们认为自闭症是一种大脑差异，而不是疾病。神经多样性倡导者将自闭症谱系障碍视为社会和文化问题，要求承认、接受和适应。然而，另类的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，这种情况是一种由环境毒素引发的免疫紊乱，儿童可以通过各种饮食改变、补充剂和替代疗法（例如高压氧疗法、蠕虫疗法和离子解毒足浴）的组合来恢复。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经历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是如何经历、思考和随后处理自闭症的。该项目还将提供对改善自闭症成人的社会和保健服务（如获得安全住房、就业和支助服务）的重要问题的见解，并了解在自闭症相关护理中不参与免疫接种和替代药物的使用。本研究集中在三个领域的调查：经验与医疗条件，知识和专业知识，和健康的社会运动。现存的关于疾病经历的社会学文献通常以“生病”或受苦个体的视角为特权，但对以下方面的研究不足：(1)对“生病”个体有着高度参与和无限期承诺的看护人；(2)拒绝接受医疗状态的确诊个体。比较神经多样性和替代生物医学倡导者对ASD的多元经验，可以更深入地理解运动识别、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在ASD方面发展自己专业知识的过程。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另类生物医学事件，对倡导者进行深度访谈，以及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：倡导者如何参与和采纳运动议程？运动的倡导者是如何反对主流科学家和医学专业人士的？在他们的运动团体中，倡导者是如何产生关于自闭症谱系障碍的知识的？

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?