Is Online as Good as the Lab? Retesting, Refining, & Revolutionising Online Approaches in Autism Research

社会科学家正在调整他们的方法，以适应2020年3月后加速发展的在线环境。在线方法对自闭症研究至关重要，因为许多自闭症成年人在临床上很脆弱，在大流行期间无法参加面对面的研究。正如我们一直在开拓的那样，这些方法被证明是一种强大的方式，可以让数量惊人的、多样化的和包容性的自闭症患者参与社会科学研究。此外，在线方法对于减少面对面研究的长期问题有很大帮助，例如无法进入实验室设施(例如，由于自闭症患者的感官敏感性)。他们还大幅削减了参与者前往研究中心的财务、环境和心理成本。展望未来，显然需要持续不断的在线方法来增进对自闭症的理解，并支持自闭症患者。然而，关键的是，必须首先解决几个基本问题：自闭症患者是如何体验在线研究的？它感觉像面对面的研究一样有价值吗？让自闭症患者参与设计研究的最好的在线方法是什么？在线样本中的自闭症患者是谁，包括那些自我认定为自闭症患者的人，他们是自闭症人群的代表吗？在线自闭症研究是否像实验室方法一样有效和可靠，它们是否可以改进？在一个由自闭症成年人、国家自闭症协会(NAS)的工作人员和一个英国在线研究平台(多产)共同开发的首个此类项目中，我们将解决这些重要的问题。首先，我们将调查与面对面研究相比，自闭症患者对在线研究的真实想法和感受。这将是一种比较不同在线方法(例如，不同规模和结构的焦点小组和调查)产生的见解的广度和深度的新方法。对丰富的定性数据的分析将为吸引自闭症患者参与在线研究过程的参与者和合作伙伴提供新的指导方针。其次，一项大型在线研究将调查4000名自闭症患者和非自闭症患者。参与者将完成关于他们的社会背景的深入问题，一般精神能力的测试，以及关于自闭症和其他诊断的信息。使用与自闭症患者共同开发的高级统计学，我们将把在线数据与现有的人口水平的结果进行比较。这些分析将首次在该领域进行，揭示对在线自闭症样本的洞察，并对更普遍的自闭症成年人做出新的发现。我们的数据还将形成世界上第一个免费访问的神经多样性数据库。允许来自世界任何地方的研究人员招募参与者并建立在我们的数据基础上，这将给自闭症和神经多样性研究带来革命性的变化。第三，使用最近开发的社会认知测试，我们将在实验室对自闭症患者的在线表现进行世界上第一次比较。一系列高级分析将为在线认知测试是否像实验室中那样有效和可靠提供亟需的洞察。我们还将询问自闭症患者他们对参与的感受，比较他们的在线和实验室经验，并了解如何改进这些方法的新教训。总而言之，这将产生关于对自闭症和非自闭症成年人进行在线和面对面研究的最佳方式的新想法。总体而言，这个创新项目是重新测试、完善和革命性在线方法的先锋，朝着将它们牢牢嵌入未来自闭症、神经多样性和社会科学研究的方向迈进。我们的发现将通过i)世界级的学术论文和会议，以及ii)科学家和其他利益相关者(例如，神经分歧的人、临床医生、政策制定者)的国际在线知识交流活动来广泛宣传。

Social scientists are adapting their methods for the online environment, which accelerated after March 2020. Online approaches have been crucial for autism research as many autistic adults were clinically vulnerable and unable to attend in-person studies during the pandemic. These approaches, as we have been pioneering, are turning out to be a powerful way to engage an incredibly large, diverse, and inclusive group of autistic people in social science research.Further, online approaches are going a long way to reducing longstanding problems of in-person research, such as inaccessible laboratory facilities (e.g., due to autistic people's sensory sensitivities). They are also slashing the financial, environmental, and psychological costs of participants travelling to research centres. Moving forward, there is clearly an ongoing need for online approaches to advance understanding of autism and support autistic people. Critically, however, several fundamental questions must first be addressed: How do autistic people experience online research? Does it feel as valuable as in-person studies, and what is the best online method to involve autistic people in designing research? Who are the autistic people in online samples, including those who 'self-identify' as autistic, and are they representative of the autistic population? Are online autism studies even as valid and reliable as laboratory approaches, and could they be improved? In a first-of-its-kind project, developed with autistic adults, staff at the National Autistic Society (NAS), and a UK-based online research platform (Prolific), we will address these important questions. First, we will investigate what autistic people really think and feel about online compared to in-person research. This will double up as a novel way to compare the breadth and depth of insights generated using different online methods (e.g., different sized and structured focus groups and surveys). The analysis of rich, qualitative data will feed into new guidelines for engaging autistic people, both as participants and partners in the online research process. Second, a large online study will survey 4000 autistic and non-autistic people. Participants will complete in-depth questions about their social background, a test of general mental ability, and information about autism and other diagnoses. Using advanced statistics, co-developed with autistic people, we will compare online data to existing population-level results. These analyses will be conducted for the very first time in the field, revealing insights into online autism samples, and making new discoveries about autistic adults more generally. Our data will also form the world's first freely accessible neurodiversity database. Allowing researchers from anywhere in the world to recruit participants and build on our data, this will revolutionise autism and neurodiversity research.Third, using recently developed social cognitive tests, we will conduct the world's first comparison of how autistic people perform online to the lab. A series of advanced analyses will provide much-needed insight into whether online cognitive tests are as valid and reliable as in the lab. We will also ask autistic people how they felt about participating, comparing their online and lab experiences, and learn new lessons about how these approaches could be improved. Together, this will generate new ideas on the best ways to conduct online and in-person research in autistic and non-autistic adults.Overall, this innovative project is at the vanguard of retesting, refining, and revolutionising online approaches, towards firmly embedding them in future autism, neurodiversity, and social science research. Our findings will be widely publicised through i) world-class academic papers and conferences, and ii) an international online knowledge exchange event for scientists and other stakeholders (e.g., neurodivergent people, clinicians, policymakers).