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巨大的进步。这部分是因为在过去的十年里，英国和国外的自闭症研究急剧扩展（Dawson，2013）。最近对英国自闭症研究进行的最全面的审查发现，2007年至2011年期间，英国政府和非政府组织在自闭症研究中投入了近2100万英镑，分布在106个不同的项目中（Pellicano等人，2013年）。经济和社会研究理事会比其他任何组织都提供更多的资金，而医学研究理事会比其他任何资助者都提供更多的资金用于自闭症研究。这些发展将受到极大欢迎。每100个英国人中就有1个是自闭症谱系，我们对自闭症的理解至关重要。进一步了解这种情况的性质及其潜在影响显然具有重大的社会意义。然而，同样的全面审查也表明，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，但更多的应用领域，研究，包括自闭症患者的公共服务，证据-基于自闭症及其相关症状的治疗方法，以及一些最新的科学进步所带来的社会和伦理挑战。这个拟议的研讨会系列将汇集一些世界上最著名的自闭症科学家和领先的专家以及从这些其他领域抽调的实践者，努力在每个关注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，能够在未来几十年内实现这一新议程。研讨会将是参与性的，开始时提出关键的挑衅或问题，既应激发立即讨论，并协助学者制定更详细的研究问题，为未来，与社区成员合作。关于公共服务的研讨会将开始提出的问题包括：在获得服务方面存在哪些社会经济、种族和性别差异？我们如何改善对自闭症儿童和自闭症成年人父母的诊断后支持？让自闭症成年人投入工作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开始：当提到自闭症干预时，我们所说的“证据”是什么意思？我们如何衡量遵循“折衷”方案的学校的教育方案的有效性？我们在干预中应该使用什么样的“结果衡量标准”，谁来做这些决定？关于自闭症和社会的研讨会将开始：我们是否应该以自闭症患者“融入”社会为目标，如果是的话，我们如何实现这一目标？自闭症社区在制定研究议程时应该占据什么位置？我们如何知道是否、何时以及如何干预自闭症儿童、年轻人和成年人？我们应该如何最好地促进对自闭症的认识（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?