首页|期刊导航|新医学|基于神经多样性范式的孤独症谱系障碍领域研究者与孤独症社群合作框架探讨

基于神经多样性范式的孤独症谱系障碍领域研究者与孤独症社群合作框架探讨OACSTPCD

Establishing a co-production framework between researchers and the autistic community:embracing the neurodiversity paradigm

中文摘要英文摘要

孤独症研究正从医学范式向更具包容性的神经多样性范式演进.医学范式着重于孤独症的缺陷和损害,研究目的局限于"修正"孤独症的表现.此外,过往的研究孤立于孤独症社群,致使研究与孤独症社群脱节,不能支持孤独症个体的需求.神经多样性范式则强调孤独症是人类多样性的一部分,呼吁研究者以更全面的视角进行研究,并使用参与式研究方法以鼓励研究者与孤独症个体共同生产知识.这一转变有助于提高研究质量和与孤独症社群的相关性,以促进社会支持系统的完善.然而,实现研究者与孤独症社群的有效合作仍需破除权力失衡等壁垒.文章介绍了神经多样性范式和参与式方法在孤独症研究中的实践及意义,并提出了研究者与孤独症社群合作的潜在框架.

Autism research is evolving from a medical paradigm,which emphasizes deficits and interventions,to a neurodiversity paradigm that values autism as an integral part of human diversity.Historically,the medical paradigm's focus on"rescue"efforts has distanced researchers from the autistic community,often failing to address the community's real needs.In contrast,the neurodiversity paradigm advocates a comprehensive understanding of autism and the adoption of participatory research practices.This shift encourages active collaboration between researchers and autistic individuals,fostering inclusive knowledge production that is both meaningful and impactful for the autistic community.However,achieving this collaborative approach requires dismantling social barriers,such as power imbalances,that hinders effective partnership.This article explores the principles and practice of a neurodiversity-aligned participatory research approach and proposes a co-production framework designed to support researchers and the autistic community in advancing autism research that is relevant,respectful,and responsive.

披垒;青衫

青衫Aspie,广东 广州 510000||中国孤独症谱系人士身份认同研究(iCAP)咨询协作组,广东 广州 510000青衫Aspie,广东 广州 510000||中国孤独症谱系人士身份认同研究(iCAP)咨询协作组,广东 广州 510000

孤独症孤独症谱系障碍神经多样性参与式研究合作生产

AutismAutism spectrum disorder(ASD)NeurodiversityParticipatory researchCo-production

《新医学》 2024 (12)

971-978,8

10.3969/j.issn.0253-9802.2024.12.003

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