New directions for UK autism research

科学家们相信，他们在理解自闭症方面取得了长足的进步。这在一定程度上是因为在过去的十年里，英国和国外对自闭症的研究有了戏剧性的扩展(Dawson，2013)。最近对英国自闭症研究进行的最全面的审查发现，在2007至2011年间，英国政府和非政府组织在自闭症研究上投入了近2100万GB，涉及106个不同的项目(Pellicano等人，2013年)。经济和社会研究理事会获得的资助比其他任何组织都多，而医学研究理事会为自闭症研究提供的资金比其他任何资助者都多。这些发展将受到极大的欢迎。每100个英国人中就有1人患有自闭症，我们对自闭症的理解至关重要。更多地了解这种疾病的性质及其潜在影响显然具有重大的社会意义。然而，同样的综合审查也表明，自闭症患者、父母、临床医生和服务提供者担心，英国的研究概况在很大程度上优先考虑基础科学，特别是生物科学，可能会牺牲其他基础但更实用的研究领域，包括为自闭症患者提供的公共服务，自闭症及其相关症状的循证治疗，以及一些最近的科学进步带来的社会和伦理挑战。这一拟议的研讨会系列将把世界上一些最著名的自闭症科学家与来自这些其他领域的顶尖专家和从业者聚集在一起，努力在每个令人担忧的领域制定新的研究议程。他们将寻求建立新的跨学科研究人员网络，能够在未来几十年实现这一新议程。研讨会将是参与性的，首先提出关键的挑衅或问题，既应激发立即讨论，又应帮助学者与社区成员合作，为未来制定更详细的研究问题。关于公共服务的研讨会将首先提出一些问题，包括：在获得服务方面存在哪些社会经济、族裔和性别差距？我们如何才能改善对自闭症儿童和自闭症成人父母的诊断后支持？让自闭症成年人进入工作岗位并让他们留在那里的最好方法是什么？关于循证治疗、干预和教育的研讨会将从以下几个方面开始：当我们提到自闭症干预时，我们所说的“证据”是什么意思？我们如何衡量遵循“兼收并蓄”课程的学校的教育课程的有效性？我们应该在干预中使用什么‘结果衡量标准’，谁来做出这些决定？关于自闭症和社会的研讨会将从以下几个方面开始：我们应该致力于让自闭症患者“融入”社会吗？如果是，我们如何实现这一目标？自闭症社区在形成研究议程方面应该有什么地位？我们如何知道我们是否应该、何时以及如何对自闭症儿童、年轻人和成年人进行干预？我们应该如何最好地促进人们对自闭症的认识(和接受)？

Scientists believe they are making great strides towards understanding autism. This is partly because there has been a dramatic expansion of autism research in the past decade in the UK and abroad (Dawson, 2013). The most comprehensive review of UK autism research ever undertaken recently found that almost £21 million was invested in autism research between 2007 and 2011 by UK government and non-government organisations, spread across 106 different projects (Pellicano et al., 2013). The Economic and Social Research Council made more funding awards than any other organization, while the Medical Research Council awarded more money for autism research than any other funder. These developments are to be hugely welcomed. With 1 in every 100 UK people on the autism spectrum, it is vital that we develop our understanding of autism. Greater knowledge of the nature of the condition and its potential impact is clearly of significant social import. The same comprehensive review has also shown, however, that autistics, parents, clinicians and service providers are concerned that the research profile in the UK has largely prioritised basic science, especially biological science, potentially at the expense of other fundamental, but more applied areas, of research, including public services for autistic people, evidence-based treatments for autism and its related symptoms and the social and ethical challenges posed by some of the more recent scientific advances.This proposed seminar series will bring together some of the world's most celebrated autism scientists with leading experts and practitioners drawn from these other fields in an effort to develop a new research agenda in each area of concern. They will seek to build new networks of inter-disciplinary researchers capable of pursuing this new agenda in the decades to come. The seminars will be participatory in nature and begin by posing key provocations or questions that should both stimulate immediate discussion and assist scholars in developing more detailed research questions for the future, in collaboration with community members. The seminars on public services would begin with questions including: What are the socioeconomic, ethnic and gender disparities in access to services? How can we improve post-diagnostic support for parents of children with autism and autistic adults? What are the best ways to get autistic adults into work and keep them there? The seminars on evidence-based treatments, interventions and educations would begin with: What do we mean by 'evidence' when referring to autism interventions? How do we measure the effectiveness of education programmes in schools who follow 'eclectic' programmes? What 'outcome measures' should we use in interventions and who gets to make these decisions?The seminars on autism and society would begin with: Should we be aiming for "inclusion" of autistic people in society and, if so, how do we achieve it? What place should the autism community have in shaping the research agenda? How do we know if, when and how we should intervene with autistic children, young people and adults? How should we best promote awareness (and acceptance) of autism?