Akbulut Canfer, Bird Geoffrey
University of Oxford, UK.
University College London, UK.
Autism. 2025 Jul;29(7):1740-1753. doi: 10.1177/13623613251325934. Epub 2025 Mar 25.
The formation of autism advocacy organisations led by family members of autistic individuals led to intense criticism from some parts of the autistic community. In response to what was perceived as a misrepresentation of their interests, autistic individuals formed autistic self-advocacy groups, adopting the philosophy that autism advocacy should be led 'by' autistic people 'for' autistic people. However, recent claims that self-advocacy organisations represent only a narrow subset of the autistic community have prompted renewed debate surrounding the role of organisations in autism advocacy. While many individuals and groups have outlined their views, the debate has yet to be studied through computational means. In this study, we apply machine learning and natural language processing techniques to a large-scale collection of Tweets from organisations and individuals in autism advocacy. We conduct a specification curve analysis on the similarity of language across organisations and individuals, and find evidence to support claims of partial representation relevant to both self-advocacy groups and organisations led by non-autistic people. In introducing a novel approach to studying the long-standing conflict between different groups in the autism advocacy community, we hope to provide both organisations and individuals with new tools to help ground discussions of representation in empirical insight.Lay AbstractSome autism advocacy organisations are run by family members of autistic people, and claim to speak on behalf of autistic people. These organisations have been criticised by autistic people, who feel like autism charities do not adequately represent their true interests. In response to these organisations, autistic people have come together to form autistic self-advocacy organisations, or groups in which activists can spread awareness of autism from an autistic point-of-view. However, some people say that autistic self-advocacy organisations do not sufficiently represent the needs of all autistic people. These tensions between organisations and individuals have made it difficult to determine which organisations can make the claim that they represent all autism advocates individuals equally, instead of showing preference to a sub-group within the autism community. In this study, we try to approach this issue using computational tools to see if, in their Twitter posts, both kinds of organisations show a preference for the interests of autistic people or parents of autistic children. We do so by comparing a large body of Tweets by organisations to Tweets by autistic people and parents of autistic children. We find that both kinds of organisations match the interests of one group of autism advocates better than the other. The insight we provide has the potential to inspire new conversations and solutions to a long-standing conflict in autism advocacy.
由自闭症患者家庭成员领导的自闭症倡导组织的形成,引发了自闭症群体部分人士的强烈批评。为回应他们认为自身利益被歪曲的情况,自闭症患者成立了自闭症自我倡导团体,秉持自闭症倡导应由自闭症患者“为了”自闭症患者来引领的理念。然而,最近有人声称自我倡导组织仅代表自闭症群体中一个狭隘的子集,这引发了围绕组织在自闭症倡导中作用的新一轮辩论。尽管许多个人和团体都阐述了他们的观点,但这场辩论尚未通过计算手段进行研究。在本研究中,我们将机器学习和自然语言处理技术应用于来自自闭症倡导领域组织和个人的大规模推文集合。我们对各组织和个人之间语言的相似性进行了规格曲线分析,并找到证据支持与自我倡导团体及由非自闭症人士领导的组织相关的部分代表性主张。在引入一种研究自闭症倡导群体中不同团体之间长期冲突的新方法时,我们希望为组织和个人都提供新工具,以帮助将代表性的讨论建立在实证洞察的基础上。
一些自闭症倡导组织由自闭症患者的家庭成员运营,并声称代表自闭症患者发声。这些组织受到了自闭症患者的批评,他们觉得自闭症慈善机构没有充分代表他们的真正利益。作为对这些组织的回应,自闭症患者联合起来成立了自闭症自我倡导组织,即活动人士能够从自闭症视角传播自闭症认知的团体。然而,有人说自闭症自我倡导组织没有充分代表所有自闭症患者的需求。组织与个人之间的这些矛盾使得难以确定哪些组织能够声称他们平等地代表所有自闭症倡导个体,而不是偏袒自闭症群体中的一个子群体。在本研究中,我们尝试使用计算工具来处理这个问题,看看在他们的推特帖子中,这两类组织是否都更倾向于自闭症患者或自闭症儿童家长的利益。我们通过将组织的大量推文与自闭症患者及自闭症儿童家长的推文进行比较来做到这一点。我们发现这两类组织与一类自闭症倡导者群体的利益匹配度高于另一类。我们提供的见解有可能激发新的对话,并为自闭症倡导中一个长期存在的冲突带来解决方案。