New directions for UK autism research

英国自闭症研究的新方向

• 批准号: ES/M00225X/1
• 负责人: Elizabeth Pellicano
• 金额: $ 3.85万
• 依托单位: University College London
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2014
• 资助国家: 英国
• 起止时间: 2014 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FM00225X%2F1
• 关键词: New; directions; UK; autism; research

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?

科学家们相信他们在了解自闭症方面取得了巨大的进步。这在一定程度上是因为在过去的十年里，自闭症研究在英国和国外有了戏剧性的扩张（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年至2011年期间，英国政府和非政府组织在自闭症研究上投资了近2100万英镑，分布在106个不同的项目中（Pellicano et al., 2013）。经济和社会研究委员会比其他任何组织都获得了更多的资金奖励，而医学研究委员会为自闭症研究提供的资金比其他任何资助机构都多。这些发展将受到极大的欢迎。在英国，每100人中就有1人患有自闭症，因此提高对自闭症的认识至关重要。更深入地了解这种疾病的性质及其潜在影响，显然具有重要的社会意义。然而，同样的综合审查也表明，自闭症患者、家长、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了基础科学，尤其是生物科学，这可能以牺牲其他基础但更实用的研究领域为代价，包括为自闭症患者提供的公共服务。针对自闭症及其相关症状的循证治疗，以及最近一些科学进展带来的社会和伦理挑战。这个拟议的系列研讨会将汇集一些世界上最著名的自闭症科学家，以及来自这些其他领域的主要专家和实践者，努力在每个关注的领域制定新的研究议程。他们将寻求建立跨学科研究人员的新网络，以便在未来几十年内实现这一新的议程。研讨会将是参与性的，首先提出关键的挑衅或问题，这些问题既应刺激立即的讨论，又应协助学者与社区成员合作，为将来制定更详细的研究问题。关于公共服务的讨论会将以下列问题开始：在获得服务方面的社会经济、种族和性别差异是什么？我们如何改善对自闭症儿童和自闭症成人父母的诊断后支持？让自闭症成年人投入工作并保持工作状态的最好方法是什么？关于循证治疗、干预和教育的研讨会将以以下问题开始：当提到自闭症干预时，我们所说的“证据”是什么意思？我们如何衡量采用“折衷”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”，谁来做这些决定？关于自闭症与社会的研讨会将以以下问题开始：我们是否应该致力于让自闭症患者“融入”社会？如果是，我们如何实现这一目标？自闭症团体在制定研究议程方面应该处于什么位置？我们如何知道我们是否，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提高对自闭症的认识（和接受）？

项目成果

AUT786721_Lay_Abstract - Supplemental material for Making the future together: Shaping autism research through meaningful participation

AUT786721_Lay_Abstract - 共同创造未来的补充材料：通过有意义的参与塑造自闭症研究

• DOI: 10.25384/sage.6958385
• 发表时间: 2018
• 作者: Fletcher-Watson S

Autism and Learning Disability Annual, Volume 2

自闭症和学习障碍年鉴，第 2 卷

• 发表时间: 2017
• 作者: Pellicano, E.

Making the future together: Shaping autism research through meaningful participation.

共同使未来：通过有意义的参与来塑造自闭症研究。

• DOI: 10.1177/1362361318786721
• 发表时间: 2019-05
• 期刊: Autism : the international journal of research and practice
• 作者: Fletcher-Watson S;Adams J;Brook K;Charman T;Crane L;Cusack J;Leekam S;Milton D;Parr JR;Pellicano E
• 通讯作者: Pellicano E