【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】
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If you like our show and want to support us, please consider the following:
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