029 美国华人移民自闭症儿童家庭的沉默政治与父母抗争 Advocacy of Autistic Parents

【聊了什么】 这一期是纽约文化沙龙线下活动的录音。我们从最基础的问题开始聊：自闭症到底是什么，为什么早诊断这么关键，为什么华裔家庭的诊断普遍偏晚。然后一路聊到更艰难的部分：神经多样性和残障权利框架之间的张力，高功能/低功能这套话语为什么害人，profound autism 这个新定义在争什么，ABA 到底该怎么看，以及所有家长最怕被问到的那个问题——我们老了、走了以后，孩子怎么办？ This episode is a recording of an in-person New York Culture Salon event. We start with the most basic questions: what autism actually is, why early diagnosis matters so much, and why diagnosis tends to come late in Chinese American families. From there we move into harder territory — the tension between the neurodiversity framework and the disability rights framework, why the high-functioning/low-functioning vocabulary does real damage, what's at stake in the new "profound autism" definition, how to think about ABA, and the question every parent dreads: what happens to our child after we grow old and are gone? 【时间轴】 00:50 什么是自闭症：神经发育障碍，以及为什么"不说话"不等于"没有表达" 04:20 冯爸讲 CAAC 的由来：研究者找不到社群，社群找不到资源 15:40 联邦还是州？Autism CARES Act、CDC 监测、Medicaid waiver，以及伊利诺伊州的"抽签" 21:20 神经多样性 vs 残障权利：两个框架之间的张力 26:40 学校对移民家庭的默认策略 37:40 倡导是一种劳动：制度排斥、资源缺口、同伴支持、生命危机 59:20 怎么向 Georgetown 的研究者解释"枪打出头鸟" 72:30 遗传有多大关系？公众最大的误解是什么？ 78:50 终极问题：我们老了以后，孩子怎么办 84:00 让医学生面对真实的残障"模拟病人" 00:50 What is autism: a neurodevelopmental disability, and why "nonverbal" doesn't mean "nothing to express" 04:20 Feng Ba on how CAAC began: researchers who can't find the community, a community that can't find resources 15:40 Federal or state? The Autism CARES Act, CDC surveillance, Medicaid waivers, and Illinois's "lottery" 21:20 Neurodiversity vs. disability rights: the tension between two frameworks 26:40 What schools default to when the family is an immigrant family 37:40 Advocacy as labor: institutional exclusion, resource gaps, peer support, life crises 59:20 How do you explain "the bird that sticks its head out gets shot" to a Georgetown researcher? 72:30 How much of it is genetic? And what's the public's biggest misconception? 78:50 The ultimate question: what happens to our children after we're gone? 84:00 Putting medical students face to face with real disabled "simulated patients" 【我们是谁 The Who】 选修课 Universus 是一档分享和探讨泛文化话题的中文播客，脱胎于2013年创办的纽约文化沙龙。 我们力求引发对学科方法和视角的认知和思考，而不仅仅是知识的传递。我们在组织活动的过程中积累了一些经验和人脉，尝试打造成年人的博雅教育，并在播客中拓展这样的探索。我们希望审视和反抗无意识的价值规训与随波逐流。我们希望冷酷地剖析自己的偏见，热忱地拥抱多元视角。我们希望去工具化，真诚地感知、理解、创造自己的生活和复杂的世界。我们追随原初的好奇而非代餐式的猎奇。话题可以轻松，方法力求严肃。在《选修课》里，我们互相映照，唤醒失落的维度。 嘉宾： Yovia Xu 许玥博士：伊利诺伊大学芝加哥分校医学院罗克福德校区临床助理教授，伊利诺伊州LEND教员，美国华裔自闭症联合会研究副主席。 冯斌：纽约自闭症家长倡导者，养育一名自闭症及多动症的孩子成长，业余服务华裔自闭症家庭社区二十多年 选修课 Universus is a Chinese-language podcast created by the same people who founded the New York Chinese Cultural Salon (纽约文化沙龙）in 2013. The past decade of organizing events and talks put us in a position of creating a sort of liberal arts education experience for those who have left school. We strive to go beyond merely transmitting knowledge to reflecting on complex topics using cross-disciplinary perspectives. We strive to resist conformity, to dissect our own biases, and to embrace diverse schools of thought. Our goal is to help professionals resist becoming just a tool of production, and to understand the world around us in earnest. We let our genuine curiosity be our guide. With a light-hearted tone, we approach each topic seriously. We hope that “选修课 Universus” creates a space to explore lost dimensions. Guest: Dr. Yovia Xu (许玥): Clinical Assistant Professor at the University of Illinois College of Medicine Rockford, faculty member of Illinois LEND, and Vice President of Research at the Chinese American Autism Coalition. Feng Bin (冯斌): Autism parent advocate in New York, raising a child with autism and ADHD, and a volunteer serving the Chinese American autism community for over twenty years. 【拓展链接】 CAAC 美国华人自闭症协会 CDC ADDM 患病率数据（1/31） 【买咖啡 Please Support Us】 如果喜欢这期节目并愿意想要给我们买杯咖啡： 打赏平台：www.patreon.com/universuspod 商务合作邮箱：[email protected] If you like our show and want to support us, please consider the following: 打赏平台: www.patreon.com/universuspod Business Inquiries Email: [email protected]