被遗漏的自闭症女性:母职、伪装与迟来的确诊 TVO Today 2026-06-09

漏诊与刻板印象

Nam Kiwanuka: 欢迎收听《Mistreated》(被误诊的人),我是 Nam Kiwanuka。历史上,我们一直被告知**自闭症(Autism)**主要影响男孩和男性。但 2026 年 2 月的一项最新研究表明,女孩患自闭症的比例几乎与男孩一样高。区别在于,女性往往在人生的晚期才被确诊。在今天的节目中,我们将与 Julie M. Green 探讨,作为一个母亲,在 44 岁时被诊断为自闭症,同时还要抚养一个自闭症谱系孩子,是一种怎样的体验。她在她的回忆录《Motherness》(《母职》)中记录了这段经历。Julie 和我探讨了自闭症的历史,以及为什么女孩经常被漏诊和误诊。我们讨论了什么是“冰箱母亲(Refrigerator Mother)”,以及为什么她们曾经被指责是导致孩子自闭症的罪魁祸首。真是毫不意外,当有疑问时,永远责怪母亲。Julie 还公开反对一种有害的刻板印象,即认为自闭症患者没有同理心,并分享了为什么她担心自闭症正在成为我们这个时代的“妖怪”。Julie 现在加入了我们的对话。Julie,能请你做个自我介绍吗?

Original English

Nam Kiwanuka: You're listening to Mistreated. I'm Nam Kiwanuka. Historically, we've been told that autism is something that mostly impacts boys and men. But a recent study from February 2026 shows that autism is almost as prevalent in girls as it is in boys. The difference is that girls are often diagnosed much later in life. On today's episode, we speak with Julie M. Green about what it was like to be diagnosed with autism as a mother at age 44 while also raising a child on the spectrum. She documents this experience in her book, Motherness, a memoir of generational autism, parenthood, and radical acceptance. Julie and I talk about the history of autism, and why girls are often underdiagnosed and misdiagnosed. We talk about what a refrigerator mother is and why they were once blamed for autism in children. Surprise, surprise. When in doubt, blame the mother. Julie also speaks out against the harmful stereotype that people with autism don't feel empathy and why she's concerned about autism becoming the boogeyman of our times. Julie joins me now. Could you please introduce yourself, Julie?

Julie Green: 当然。我的名字是 Julie Green。我是一名居住在金斯顿的作家。

Original English

Julie Green: Sure. My name is Julie Green. I'm a writer based in Kingston.

Nam Kiwanuka: 你写了这本非常美丽的书,叫做《Motherness:代际自闭症、为人父母与彻底接纳的回忆录》。你能告诉我们更多关于促使你写这本书的原因吗?

Original English

Nam Kiwanuka: Uh you wrote this really beautiful book called Motherness, a memoir of generational autism, Parenthood and Radical Acceptance. Can you tell us more about what prompted this book?

Julie Green: 是的,大概有两个方面的原因。真正的动力实际上来自于我自己的自闭症确诊。我的儿子在三岁时被诊断为自闭症,然后十年后,我终于有了一点预感,觉得自己可能也是自闭症患者。我们稍后再详细谈这个。但在这个长达十年的过程之后,当时我已经 44 岁了,这算是相当晚的,但事实证明,女性在晚年才发现自己是自闭症患者其实很常见。在这个过程中,有一种可以说是“事后剖析”——虽然听起来有些病态——但我开始用一种新的视角回顾我的生活、所有发生过的情境以及人际关系,因为我现在明白了自己是自闭症患者。所以在所有这些分析中,我也在想,我的经历与我儿子相比如何?有很多相似之处,有很多重叠的地方,但同时也有很多不同之处。这给了我这本书的结构和灵感。所以,这本书的结构是交替进行的,一部分是我从怀孕到儿子 13 岁期间抚养他的经历,另一部分穿插了我自己的经历。我把它按自闭症特征或我们通常认为与自闭症相关的事物进行了划分。比如,对比他和我处理感官问题的经历。这本书也凸显了我们所有不同和相似的地方,因为大家都知道自闭症是一个谱系,但归根结底,我认为我们仍然期望所有人、所有自闭症都以同一种方式表现出来。

Original English

Julie Green: Yeah. Um kind of twofold. Uh really um the the real impetus came after my own autism diagnosis. So my son was diagnosed at three and then 10 years later I finally got an inkling that I might also be autistic. More on that later. But um it took 10 years in the process and then just look I was 44 at the time which is quite late but it turns out quite common um for women to find out late in life. And there was this process of sort of I guess this post-mortem, well sounds morbid, but looking back through my life and all these situations that happen and relationships and through a new lens now that I had that understanding that I was autistic. Um, so through all that analysis, I was also thinking, well, how does that compare with my son? There's so many similarities. um there's such overlap but yet there's so many differences as well and that just gave me kind of the structure an idea for the book. So um the way it is structured is that it alternates between my experience of of parenting my son from the time I was pregnant till he's 13 and interspersed with that are my own experiences and I've broken it down um by I guess autistic traits or things that we would associate with autism. So comparing, you know, for instance, his experience with sensory um issues compared to mine. Um and it also sort of highlights all the ways that we're we're different and similar because everyone knows autism is a spectrum yet what comes down to it, we still I think expect everyone to for it to present in one way. So...

母职与异类感

Nam Kiwanuka: 你刚才提到了很多我想跟进的话题,包括你在 44 岁时发现自己处于自闭症谱系的事实。但是,我想先稍微谈谈这本书的标题。我觉得 "Motherness" 这个词非常有趣,我想问你,它是什么意思?你为什么起这个名字?什么是 "Motherness"?

Original English

Nam Kiwanuka: um, you've, uh, mentioned a lot of things that I want to do follow-ups on to, uh, including the fact that you find out that you're on the spectrum at age 44. But, um, I wanted to just talk a little bit about the title of the book. I think the word motherness is so interesting and I wanted to ask you, what does that mean? Why did you What is motherness?

Julie Green: 哦,我必须为这个标题据理力争,因为你知道,出版商和人们都不太喜欢你自创词汇。你怎么敢这样?但对我来说,它是完美的结合,完美契合了这种**被异化(Otherness)**的概念。从小到大,你总觉得格格不入,但又不知道为什么。你只是有一种自己是“异类”的感觉。而且,作为一个抚养残障孩子的母亲,这种异化感同样存在,你经常被孤立。在某种程度上,你和那些抚养普通孩子的同龄人确实无法融合。你觉得自己不能参加同样的活动,或者参加活动非常有压力。人们并不真正理解你正在经历什么。所以,我也探讨了这种被异化的一面。因为除了我自己是自闭症患者之外,还有抚养一个自闭症孩子的整个旅程。我发现很多事情,甚至在自闭症社区内部都不常被谈及。我清楚地记得,在和儿子相处的早年里,我感到极其孤立、非常孤独,经历了各种各样的情绪。当然,事情并不总是像我们在媒体上看到的那么悲惨。情况并没有那么糟糕。我们一家人也有很多乐趣,但同时在很多方面,我也感到非常与世隔绝。所以,我也想探讨这方面的内容,因为我没有在其他书中真正看到过自己的影子。我想,这大概是第一本——或者据我所知是第一本——由一位本身是自闭症患者的女性、作为母亲记录抚养自闭症孩子的经历的回忆录。因为我们有自闭症倡导者写的回忆录,但他们大部分没有孩子;我们也有抚养自闭症孩子的父母写的回忆录。但我认为,还没有什么书真正把这两种经历结合起来。而这种经历现在越来越普遍,很多父母都是通过孩子才意识到自己的神经多样性,而不是更早。

Original English

Julie Green: Oh, and I I had to fight for this title because, you know, publishers, people don't take kindly when you want to make up a word. How dare you? But to me, it was it was like the perfect um you know, mashup to this whole idea of of being of being otherred um and having grown up feeling like you don't fit and you don't know why. You just do have this sense that you are other. Um, and even the sense, I guess, as a as a mother raising a child with a disability, there's also an othering there where you're often isolated. Um, at a certain point, don't really um fit with your peers who are raising typical kids. You feel like you can't join in the same events or it's quite stressful. People don't really understand what you're going through. So, there's that whole side of otherness as well. um that I I talk about um because even aside from me being autistic, there's this whole journey of raising an autistic child. And a lot of the things that I found even within the autism community weren't really talked about that often. And I know certainly in the early years with my son, I felt extremely isolated, uh, very alone, um, a whole range of emotions. And, you know, it wasn't it wasn't that it was always this this tragic narrative that we see. It wasn't it wasn't terrible. There were we had a lot of fun as a family and everything, but we also felt quite I felt quite cut off in a lot of ways. Um, so I wanted to explore some of that as well because I had not really seen myself in other books. So I I I guess it was the first or is to my knowledge the first memoir of a parent who is autist you know a woman who is autistic as a parent who is also raising an autistic child because we have memoirs by autistic advocates who by and large don't have children and then we have the memoirs by the parents uh raising autistic children but nothing really I think that that combined those those experiences which is increasing ly common now where a lot of parents are realizing their own neurode divergence through their children and not earlier.

Nam Kiwanuka: 这太有趣了,因为这种经历……我的意思是,当你成为父母时,它已经像是某种“你只有身在其中才能理解”的事情,然后现在你身在其中,却又感受到了一种异类感。

Original English

Nam Kiwanuka: That is so interesting because it's so it's this experience. I mean when you become a parent it's already kind of like this is not like you really have to be in it to understand it and then now you're in it but then you're you're feeling this sense of like otherness.

Julie Green: 没错。那大概是在 2012 年。我们当时的自闭症认知水平远不及现在。当时的互联网也不像现在这样发达。你不能在指尖上获取这么多信息,也没有所有这些你可以了解自闭症、或者听自闭症倡导者发声的论坛和社区。所以那是一个非常不同的时代。基本上我觉得,你见了一位社工,拿到了一份报告,上面写着:“是的,你的孩子被确诊了。祝你好运。走吧,去获取相关的服务吧。”而我,我伴侣和我当时对自闭症几乎一无所知。所以,那是一段非常陡峭的学习曲线。当时一切都围着我儿子转。根本没有任何关于我自己的预感。只有非常缓慢地,我才直觉上理解了他的一些事情。然后我想,好吧,也许这其中有某种联系。比如,我明白我想捂住耳朵的感觉,我也明白为什么他不能穿这件衣服,但可以穿那件。但随后也有太多不同之处,我只是把这种念头压在心底很多年。老实说,我太忙了,忙着去了解他,完全深陷其中,根本没时间去考虑关于我自己的任何事情。

Original English

Julie Green: Correct. Yeah. This would have been around 2012. We weren't nearly where we are with autism awareness. Um, I mean, the internet was wasn't quite what it is now. You didn't have all this information at your fingertips. You didn't have um all these forums and communities where you could learn about autism or or you know, by autistic advocates. Um, so it was a very different place. It was basically I felt like, you know, you had a social worker. You'd get the report saying, "Yes, your child has this diagnosis. Good luck. Off you go. Get the services." And I, you know, my partner and I knew virtually nothing about autism, uh, autism then. So, it was a really steep learning curve. And there at the time it was all about my son. And there was no inkling even that, you know, it was only very slowly certain things I understood about him intuitively. And I thought, okay, like maybe there's something to that. you know, I understand I want to cover my ears and I understand why he can't wear this, but he can wear that. And um but then there were so many differences too that I just pushed it in the back of my mind for many years. And I was I was too busy honestly just learning about him and and just you know deep in the weeds uh in the reads or whatever um to even consider anything about myself.

脸盲与社交伪装

Nam Kiwanuka: 你提到你和你的孩子有很多共同点,包括面容失认(脸盲症)。你在书中写道——我删掉了脏话——但你写道:“在我的情绪状态和面部表情之间存在着脱节。我平淡或空洞的凝视可能会让我看起来很无聊,甚至充满敌意,而我只是在专心致志。当我全神贯注时,我看起来可能非常生气。换句话说,我有慢性的‘臭脸综合症’。” 这个坦白让我笑出声来,因为这太有共鸣了。但这也让人感到沉重。写一本书是一回事,但不得不推广它、接受采访是另一回事。这个过程对你来说是什么样的?

Original English

Nam Kiwanuka: Um, you mentioned that you and your child um shared a lot of different things including face blindness. Um, and you write uh that you write this. I've taken out the swear words, but you write this. Between my emotional state and my facial expression lies a disconnect. A flat a flat or vacant stare may make me appear bored or even hostile when I'm simply concentrating. I may look downright peed off when I am wrapped and attentive. In other words, I have chronic resting beef face. Well, this admission uh this admission made me laugh out loud because it's relatable. Uh but it also felt heavy. Uh writing a book is one thing, but having to promote it and do interviews is another. What has this process been like for you?

Julie Green: 是的。从某种奇怪的意义上说,我很幸运,因为你知道,我们现在有了像 Zoom 这样的工具。当人们对我说:“哦,你的签售巡演……” 我会说:“不,根本没有巡演,这是刻意安排的。”我尽量安排了很多这类形式的露面。你知道,广播和播客是很宽容的。我可以在镜头外做些自我刺激(Stimming)动作。这要舒服得多,我不用离开家。它消除了很多不确定因素。但它仍然非常非常折磨人。我必须在安排日程时非常谨慎。因为我确实经历过濒临倦怠(Burnout)的阶段。我正在努力更自觉地保持真实,不要试图去伪装(Masking)。但这其中自然还是有一部分让人觉得,这些社交活动非常累人,尽管科技帮了很大的忙。因为作为自闭症患者,很多作家甚至不用是自闭症患者也会这样,你知道,作家倾向于内向,我们从事着私密、孤独的工作。然后突然在这个时代,你被期望走出去,无处不在,你知道,制作短视频、推销自己,成为一个品牌。这是非常不舒服的。仅仅是“被作为某种东西看待”的想法,也是许多自闭症患者(包括我自己在内)挣扎的地方。但你知道,这同时也是一种“必要的恶”。

Original English

Julie Green: Yeah. Um, you know, I'm I'm lucky in a in a strange sense that, you know, we have the likes of Zoom these days and because people will say to me, "Oh, your book tour." And I'm saying, "Well, no, there is no tour, you know, by by design." Um, I've made it so that I've I've done a lot of these sort of appearances. You know, radio and podcasts are forgiving. Like, I'm stmming off camera. I can um it's a lot more comfortable. I don't have to leave my home. It eliminates a lot of elements. Um still very very grueling and I've had to be quite conscious about how I schedule things and I've because I've I've had phases where I've been burning getting close to burning out. I'm trying to be more conscious about being authentic and and not trying to mask but there's still naturally an element of you know this is quite uh tiring and social um even though technology helps a lot. So, um, yeah, autist because autistic people and I mean a lot of writers, not even autistic people, but you know, authors tend to want to be um, introverted and we do this private solitary work and then suddenly in the age we're in now, you're expected to go out there, be everywhere, and, you know, making reals and promoting yourself and uh, being a brand. And it's it's very uncomfortable and um like just this idea of being perceived as something a lot of autistic people struggle with um myself included and it but you know it's also a necessary evil.

确诊后的释然

Nam Kiwanuka: 你提到了“伪装”,我想回到这个话题。我想谈谈你是如何得到这个确诊结果的。你写道,多年来,你一直在犹豫是否要在 44 岁时去接受自闭症评估。你最终在书中接受了评估。你这样写道:“‘你是自闭症患者’,医生说。不可能。我不可能在谱系上,这是你的第一想法。我不是《雨人》,不是谢尔顿·库珀,甚至不是天宝·葛兰汀(Temple Grandin)。” 天宝·葛兰汀是一位科学家和活动家,写过《自闭症大脑》。我觉得当时非常有趣的是,你正在抚养一个谱系上的孩子。回望过去,你能描述一下得到那个诊断感觉如何,以及你为什么会作那样的反应吗?

Original English

Nam Kiwanuka: You mentioned masking and I I want to come back to masking. I I want to talk about how you got to um know this diagnosis. You wrote for years that you sat on the fence about getting assessed with autism at 44. You finally get assessed in the book. You write this. "You are autistic. The doctor says now impossible. I can't be on the spectrum is your first thought. I am not Rainman, Sheldon Cooper, or even Temple Grandon." And Temple Grandon is a scientist and activist who wrote the autistic brain. Um, what I thought was really interesting at this time, you are um raising a child on the spectrum. So looking back, can you describe what it felt like to get that diagnosis and also why you reacted that way?

Julie Green: 是的。就像所有人一样,我们拥有的只是刻板印象。在很长一段时间里,这就是我对自闭症的全部了解。直到我遇到了另一位晚期确诊的自闭症女性,我才产生了一丝预感,并开始考虑这种可能性。当时我想:“哦,哇。好吧。你的意思是,自闭症不一定非要看起来像雨人、谢尔顿·库珀或者天宝·葛兰汀?”所以,那些人并非典型情况,那是一种罕见的情况。这是我互动的第一个女性自闭症患者。她是另一位家长,我们在当时的“博客圈”里认识。终于有一天,我向我的医生提出了这个话题,幸运的是她没有对我进行情感操纵(Gaslight)——没有对我说“哦,好吧,你不是有朋友吗?你还能进行眼神交流,所以你肯定不是自闭症。”因为我知道很多女性去寻求评估时都会被这样拒绝。幸运的是我有一位好医生,她很愿意倾听,并推荐我去做评估。然后我就在某种程度上忘记了这件事。一年后,我的名字从候补名单中排到了,很显然我接受了完整的评估。所以,以一种奇怪的方式,我已经在这个可能性上思考了非常非常长的时间。那种感觉很奇怪。当这些词语被真正说出口,当你拿到那份报告时,就像是一种释然:我终于确切地知道是什么原因了。这是我预料之中的。但同时,当你阅读那份报告时,你会觉得:“嗯,其实在某种程度上,我有点以为自己不是。”然后当你看到评分时,你会惊呼:“哦……”

Original English

Julie Green: Yeah. Well, like everyone, all we have are the stereotypes and that's all I knew of autism for the longest time until the only inkling that maybe made me start to consider it um was meeting another late diagnosed autistic woman and I thought, "Oh, wow. Okay. You mean autism doesn't have to look like Rainman, Sheldon Cooper, and even Temple Grandon? So, those people weren't, you know, it was it was a rare thing. And it was the first um autistic woman I had interacted with. She was another parent and we'd met through sort of the blogosphere as it was called back then. Um and then finally one day I just broached the subject with my doctor who luckily didn't gaslight me um and say oh well you know you have friends don't you and you can make eye contact so you must not cuz I know a lot of women approach it and they are shot down um but fortunately my doctor I have a doctor and she was receptive and she um put me forward for the assessment and then I kind of forgot about it in a way and then a year later I my name came up in the weight list and uh obviously then had had the full uh assessment done and so in a in a strange way I'd been mulling over the possibility for a very very long time. So um it was weird. So when the the the actual words were delivered and you get that report, um it was like relief like finally I know for sure that's what it is and I expected it but also it was like oh then you're reading the report and you're like well really in a way I kind of didn't think I was and then you're reading the scoring and you're like oh...

Nam Kiwanuka: 你终于明白了你是谁。在 44 岁的年纪,这可能是你有生以来第一次完全理解自己、了解自己,这种感觉是怎样的?

Original English

Nam Kiwanuka: um okay interesting for you to finally like understand uh who you are. What was it like to fully understand like to get you to know yourself perhaps for the first time at age 44?

Julie Green: 是的。这就是问题的关键。很多人反对标签,但是你知道吗,你会被贴上其他标签。如果我不称之为自闭症,那么我已经内化了许多其他的标签,比如“你非常死板”或者“你为什么会这样?” “你为什么这么公主病?” “你为什么不能处理这个?” “你为什么应付不了那个?” 我内化了大量的这种指责。坦白说,这给我的心理健康带来了很多问题。所以,我觉得在人生这么晚的阶段才确诊是一种遗憾。即使是现在,我仍需要不断提醒自己,因为要摒弃你一直以来深信不疑的观念是非常困难的。我现在必须尝试捕捉自己的负面情绪并对自己说:“好吧,不,你处理不了不是因为你有缺陷,而是因为你的不同之处,因为你的神经学构造。这不是性格缺陷。” 这需要时间。重写那些陈旧的自我叙事是一个正在进行的过程。

Original English

Julie Green: Yeah. I mean, this is the thing. So many people rally against labels, but it's you know what, you get these other labels. if I'm not calling it autism, then I I'd internalized a lot of other labels like you're you're very rigid or why are you why are you this way? Um um you know, why are you why are you such a princess? Why can't you handle this? Why can't you cope with that? And so I'd internalized a lot of that. Um and it just creates a lot of problems um with my mental health quite honestly. Um, so I think it's it's a shame it's this late in life, but it's and I still catch myself because it's very hard to unlearn what what you've believed all along. So I will have to try to catch myself now and say, well, no, you can't handle that because this, you know, because of of your difference um you know, your neurology, it's it's it's not um a character flaw. So it does kind of take take time. It's a work in progress um to try to um you know get sort of rewrite those those old narratives.

Nam Kiwanuka: 所以,我认为从历史上看,人们一直存在一种认知,认为自闭症主要影响男孩,而你与我们分享的经历表明了女孩不被确诊会带来伤害。我想念一段你在书中写的话。你写道:“自从奥地利裔美国精神病学家兼内科医生 Leo Kanner(里奥·肯纳)在 1943 年首次描述所谓‘早期婴儿自闭症’以来,自闭症的面孔一直都是白人、顺性别且为男性。并不是说自闭症女孩和女性不存在。我们一直都在这里,隐藏在众目睽睽之下。” 为什么拓宽我们对自闭症面貌的理解如此重要?

Original English

Nam Kiwanuka: Um so I think um I think historically there has been this perception that autism mostly impacts boys and what you are sharing with us. It's showing some of the harm that can come out of girls not being diagnosed or um and you wrote I wanted to read something that you wrote in the book. You write this. "Ever since Austrian-American psychiatrist and physician Leo Canor first described quote early infantile autism in 1943, the face of autism has been white cis and male. It's not that autistic girls and women did not exist. We have always been here hidden in plain sight." Why is it important to broaden the understanding of what the face of autism looks like?

Julie Green: 这太重要了。不仅因为我刚才提到的原因,还因为现状是——并不是自闭症女孩不存在。我们是被漏诊了,我们中的许多人在很晚的时候才被确诊。我们没有得到任何理解或支持。我们在没有任何理解或支持的情况下度过了童年、青春期以及成年早期。这在许多层面上显然是至关重要的。在心理健康方面,我们经常被误诊。这也是为什么这对你们的播客来说是一个非常完美的主题。通常,女性或女孩被诊断为抑郁症,这其实是一种共病,但它并没有说明全貌。或者经常被诊断为像边缘性人格障碍(Borderline Personality Disorder)之类的疾病,这也非常普遍。在健康方面,我们倾向于患有其他健康问题,比如我在书中大量谈到了偏头痛,在我的案例中,现在已经有明显的关联性证明了这一点。我们还会有一些胃肠道问题。自闭症女性的饮食失调、生殖系统疾病(如子宫内膜异位症)的发生率要高得多。所以,如果我们没有意识到这些女性患有自闭症,那么她们不仅没有得到心理健康方面的支持,更因为我们没有用正确的名字来标记它,我们也就没有真正理解、也没有为她们因自闭症并发的躯体医疗状况提供支持。所以我们需要看到全貌。这还不算最糟糕的,最严重的是,人们在成长过程中充满了自我厌恶(Self-loathing),不知道自己是谁。而如果她们早点知道,她们就可以为自己发声。她们就可以了解自己需要什么才能变得更健康、更快乐。所以我认为这在任何年龄段都是至关重要的。正如你所说,现在是时候改进研究和科学了。因为如果所有的研究都仅仅涉及那些年轻的白人男孩以及那个版本的自闭症是如何表现的,那么即使是现在的诊断标准也需要迎头赶上。我认为现在可能有一种测试能实际测量“伪装(Masking)”程度。所以,我认为他们确实在试图采取措施来纠正这一点。因为如果我们使用的诊断标准完全是针对男孩的自闭症表现、或者仅仅是某一种非常具体的表现的话,女性和女孩当然会继续被漏诊。

Original English

Julie Green: Well, it's Oh, it's so important like for the reasons I said as well because what's what's happening is is not that autistic girls weren't existing. We were missed and so many of us are diagnosed later. Um, and we're not getting any, you know, we're not getting we we've gone through childhood, adolescence, whatever, early adulthood without any understanding or support. So that's obviously crucial on a lot of levels. So in terms of mental health, we're often misdiagnosed. Um which is why, you know, it's such a perfect theme for for your podcast. So uh frequently women or girls were diagnosed with depression, which is kind of a core morbid thing, but it doesn't tell the full picture. Or often things like borderline personality disorder, also very common. Um and also health we tend to have other um health conditions like um I talk about in the book a lot and migraines in my case there's now like proven correlation we have issues with um some gastrointestinal issues um you know there's a higher incidence of like eating disorders um reproductive disorders endometriosis there's like a much higher incidence this in autistic women. So, if we're not realizing that these women are autistic, then not only are they not getting mental health support um because we're not we're not labeling it giving it the right name, we're not so we're also not really understanding and viewing getting them the support for for the medical conditions that we you know that we have in tandem with autism. So, we need to sort of see the the full picture. Um so yeah and not least which that uh people are growing up sort of uh full of self-loathing and not understanding who they are when you know they can they can have they can be advocating for themselves. They can be getting to know um what they need to be healthier and happier. So I think that's vital at any age. Um but you know as you say it's it's time it's trying to revamp the research and the science because if all the research um was just involving these young white boys and how that version of autism presented then even the diagnostic criteria now needs to catch up. Um there may be I think a new test that actually measures masking. Um, so I think they're are trying to take steps to redress that because, you know, of course, women and girls will continue to be missed if we're using diagnostic criteria that was solely aimed at the presentation of autism for boys or a very select presentation.

伪装的沉重代价

Nam Kiwanuka: 你几次提到了“伪装”。什么是伪装?

Original English

Nam Kiwanuka: You've mentioned masking a couple of times. What is masking?

Julie Green: 我觉得很多人想象它是像演戏一样。与其说它是一种有意识的行为,不如说它是一种保持安全、融入群体的方式。在我的案例中,很大一部分是镜像模仿。比如,表现得非常沉默、害羞,观察并试图模仿别人,比如模仿你观察到的女孩们的举止。我过去经常读很多书。这实际上可能是我成为作家的原因。我非常痴迷于读小说,因为我实际上是在研究人们是如何行动的。所以,很多人也会看电视节目,试图学习、复制和模仿人们。他们会试图做出同样的非语言动作。我们称之为脚本化。我们经常在心里排练对话,或者演练人们使用的某些短语。这是一种非常有压力和不自然的行为,但同时,我们中能做到这一点的人,在某种程度上会更安全,因为我们可以“蒙混过关”,可以被当成普通人。我们不显得突兀。因此,我们的自闭症更加隐形,不那么明显,但这背后的代价是长期的压力,我认为这些情况会对神经系统造成伤害。你知道,我从小到大一直经常生病,我现在仍然如此,但我现在对它有了更好的理解。那种神经系统的失调最终会找上你,而且经常导致彻底崩溃(Burnout)。

Original English

Julie Green: Yeah. Um, it's it's I think a lot of people imagine it's like acting. It's not a it's not a conscious thing so much as um a way of being safe um and and fitting in. So in my case a lot of it is mirroring. So in my case it was it was like being quite mute and shy and observing and trying to copy things you know copy how you've read girls. I used to read a lot of books. It actually is probably the reason I I became a writer. I got very into reading novels because I was actually studying how people act. So, a lot of people will also watch TV shows and try to learn and copy and mimic people. So, um they'll try to um you know make the same kind of non-verbal gestures um scripting. We often rehearse rehearse conversations or certain phrases that people use. Um it's like a very stressful and unnatural thing to do, but at the same point those of us can do it um are are safer in a way because we can we can pass um we can pass for typical. We're not standing out. So, our autism is more invisible and it's not as obvious, but the cost of that is um a lot of just chronic um stress and and these conditions I think on the nervous system. You know, I kept getting I kept getting sick all through my life and I I still do, but I'm I have a better understanding of it now. Um but that kind of disregulation in your nervous system catches up with you and um it can lead it often leads to to burnout.

Nam Kiwanuka: 你所说的真是令人心碎。因为你意识到自己应该以某种特定的方式行事,而这违背了你在自己身体里的真实感受。你几次提到了差异。因为我认为,当我们想到某人处于自闭症谱系时,我们会联想到男孩可能表现出的样子——比如某人在某个地方大发脾气,也许他们只是个孩子。总之,在我们的社会中,对于它看起来是什么样子有这些固有的观念。那么,与男孩相比,女孩的自闭症表现在哪些方面有所不同?

Original English

Nam Kiwanuka: It's really it's heartbreaking what you're saying because you're aware that you should be behaving in a certain way which goes against how you feel in your own body. Um, you mentioned a few times the differences because I think when we think of someone being on the autistic spectrum, we think of uh maybe how boys present, someone who is maybe um having a tantrum somewhere, maybe they're just a child, but anyway, we have these ideas in our society of what it looks like. What are the So, what are the differences in how girls present with autism when compared with boys?

Julie Green: 是的,伪装正是女性容易被漏诊的很大一部分原因,因为我们具备这种能力。其中有几点不同:首先,我们在社交上更有动机。所以有人可能会说,“哦,但你有朋友啊”。可是如果你深究表面之下,你会看到那是付出了巨大的努力换来的。我们在社交上仍然可能会犯很多错误。我们可能要在心里反复排练这些对话,或者不断地踩坑,仍然会有很多社交上的困惑,但我们可能确实拥有一个朋友。其次,我们的兴趣点可能更趋于常规。我们依然拥有非常强烈的兴趣,但可能是极其痴迷于芭比娃娃、帽子、马、或者某个流行歌星之类的事物。所以有时候这些兴趣并不会显得突兀,因为它们与同龄群体里的其他女孩非常吻合。但区别同样在于那种痴迷的强度和程度。你知道,就像那种分类的执念。我回想起来,我一直非常喜欢音乐,很多人也都喜欢音乐。但我会收集几百张碟片,并且把它们全部按照字母顺序排列好、分门别类地归档,这是一种非常严谨的系统化……你知道,这就稍微倾向于更自闭症的特质了。另一件事,就像我刚才说的,纯粹是性别偏见的因素。男孩倾向于以更外向的方式表现他们的自闭症,而当女孩感到痛苦或挣扎时,往往是更内向的。所以就像我说的,会有很多饮食问题、很多感官问题。我儿子和我之间(以及很多女孩对男孩)的巨大差异在于:男孩——我是说女孩也会崩溃(Meltdowns)——但我儿子会有巨大的过激反应,比如攻击性、扔东西、摔东西、大规模的爆发。而很多女孩则会经历我们所说的“停机(Shutdowns)”,也就是她们几乎会蜷缩成一团、精神崩溃、或者很长一段时间无法说话,她们必须退缩起来,从任何社交活动中慢慢恢复。所以,你知道,这就导致在学校里女孩们不会引起太多注意,因为你会低下头,你想要取悦别人,你完成了你的作业。但这并不意味着你不挣扎。它只是不那么明显罢了。

Original English

Julie Green: Yeah. And that's part of the re masking is like a big part of the reason that girls do get missed because we have this ability. So a few things would be um that we're more socially motivated. So we might someone might say well you have friends but well if you scratch the surface you'll see that there's a lot of like striving. We might still get a lot of social things wrong. Um, you know, we may rehearse these conversations or constantly like misstep and there's still a lot of social confusion, but we may actually have a friend. Our interests are a little can be a little more conventional. So, we still have quite intense interests, but it might be like that we're really obsessed with um Barbies or or hats or horses or or whatever. So sometimes the interests don't stand out because they're very much in line or like say a pop star or something like that, you know. So that wouldn't really stand out among um other girls in our peer group. But again, it's kind of like the the intensity and the level of it, you know, where it's like the cataloging and just the level of interest, you know? I think about it now, like I've always been really into music, but lots of people are into music, but I would literally have hundreds of things and I would have it all aletized and cataloged and it was all like a real um you know that that points it gears it a little bit to something a bit more um more autistic. But um the other thing too as I said is just the gender bias element that um you know boys tend to show their autism in a more external way whereas what when girls are distressed or struggling it tends to be more internal. Um so as I said a lot of um eating issues, a lot of sensory issues. Um and it so the big difference with my son and I and a lot of girls versus boys is the boys I mean girls would have meltdowns too but these my son would have these huge reactions where you know aggression, throwing things, breaking things, massive explosions. Whereas a lot of girls would have things called shutdowns where they would just pretty much curl into a ball, break down or not be able to speak for a while, like have to retreat um and recover from any social outing. Um so, you know, it's things like in in school the girls wouldn't get much attention because you you'd put your head down, you'd want to please, you'd do your work, but it doesn't mean you're not struggling. It's just less visible.

历史研究与漏诊

Nam Kiwanuka: 这里是《Mistreated》。您正在收听我们与 Julie M. Green 的对话。她的书《Motherness》是一部关于抚养自闭症谱系儿童以及她自己在 44 岁被诊断为自闭症的回忆录。我们稍后会回到对话,但我想花点时间探讨为什么自闭症谱系上的女孩在历史上一直被忽视,以及这种情况正在如何改变。

几十年来,研究人员一直在研究男孩的自闭症症状。对自闭症的首次描述归功于 Leo Kanner,一位奥地利裔美国精神病学家,他在 1943 年将其称为“早期婴儿自闭症”。一年后的 1944 年,Hans Asperger 单独描述了一种类似的疾病,后来被称为阿斯伯格综合征(Asperger Syndrome)。但在 Asperger 被指控在二战期间与纳粹勾结后,这个名字已被撤回。根据英国国家自闭症协会的说法,“过去被称为阿斯伯格综合征的情况是自闭症谱系的一部分,不再需要一个单独的术语。” 在 20 世纪 80 年代,自闭症被认为是一种存在于连续体上的神经发育状况。正是那时,“自闭症谱系障碍”(ASD)一词应运而生。今天,倡导者呼吁使用“状况”或“神经系统差异”等词汇,以消除“障碍”一词的负面含义。

虽然标签可能随着时间的推移而改变,但有一件事保持不变。自闭症女孩的症状尚未得到广泛认可。2022 年的一篇论文显示,“近 80% 患有 ASD 的女孩被漏诊了”。在 2026 年 2 月,《英国医学杂志》(BMJ)发表的一项来自瑞典的研究表明,自闭症在男性和女性中的发生率可能相近,但男孩在童年时期被确诊的可能性是女孩的四倍。该研究发现,到了 20 岁时,男性和女性的确诊率几乎相等。该研究的主要作者 Dr. Caroline Fe 说:“我们的研究结果表明,自闭症患病率的性别差异比以前认为的要小得多,这是由于女性和女孩被漏诊或确诊较晚。”

根据美国疾病控制与预防中心的说法,这是因为“患有 ASD 的女孩具有较少被认可的症状组合,或者有更高的智力能力、更好的语言能力以及看似更好的社交技能。” 但这些看似更好的社交技能往往是女孩们“伪装”或掩饰她们症状的结果,这与她们处理 ADHD 的方式经常类似。Aid Canada,一家分享自闭症和其他智力残疾资源的全国性非营利组织指出,90% 的女性曾进行过“伪装(Camouflaging)”。这种行为可能会使识别女性自闭症患者变得更加困难。一些自闭症患者将伪装归功于她们的社交和职业成功,因为当她们的自闭症特征不那么明显时,她们在这些空间中遭受的耻辱感和边缘化较少。

但是,伪装对个人来说是极度消耗精力的,并且是自杀的风险标志。伪装也会阻碍或延迟自闭症的确诊,并可能强化性别如何常常影响自闭症患者健康结果的现象。及时确诊有助于发现其他共存疾病。自闭症谱系上的女孩和女性更有可能经历癫痫发作、胃肠道疾病、头痛和偏头痛、唐氏综合征、子宫内膜异位症、自身免疫性疾病、哮喘和食物过敏。研究还显示,自闭症与 PCOS(多囊卵巢综合征,现称 PMOS)之间存在联系。及时确诊也可以帮助个体更好地理解自己。2023 年的一项研究发现,患有 ASD 的女性和神经典型的女性发生让她们事后后悔的性经历的数量相当。但是,与神经典型的同龄人相比,患有 ASD 的女性同意进行不受欢迎的性行为的可能性要高出两倍。

尽管研究正在追赶现实,但仍然存在许多错误信息。回溯到 2025 年 9 月,美国总统唐纳德·特朗普指责母亲在怀孕期间服用泰诺导致了自闭症。而这并不是母亲们第一次因这种情况受到指责。在 50 年代,所谓的“冰箱母亲(Refrigerator Mothers)”被指责因情感冷漠而导致她们的孩子的自闭症。在 1990 年代,一位医生将自闭症归咎于 MMR 疫苗。尽管他的论文被撤回并被吊销了行医执照,但麻疹疫苗可能引起自闭症的观点依然存在。虽然加拿大在 1998 年成功消灭了麻疹,但我们在 2025 年又失去了消除状态。现在回到 Julie,我们来进一步讨论“冰箱母亲”。

Original English

Nam Kiwanuka: This is Mistreated and you've been listening to our conversation with Julie M. Green. Her book, Motherness, is a memoir on raising a child on the spectrum and receiving an autism diagnosis herself at age 44. We'll get back to it shortly, but I want to take some time to examine why girls on the autism spectrum have historically been ignored and how that's changing. For decades, researchers studied autism symptoms in boys. The first description of autism is credited to Leo Cannor, an Austrian American psychiatrist who referred to it as quote early infantile autism in 1943. A year later in 1944, Hans Asperger separately described a similar condition and it became known as Asperger syndrome. But that name has been clawed back after allegations that Asperger collaborated with Nazis during World War II. And according to the UK's National Autistic Society, quote, what was referred to as Asperger syndrome is part of the autism spectrum and there is no need for a separate term. In the 1980s, autism became recognized as a neurodedevelopmental condition that existed on a continuum. That's when the term autism spectrum disorder or ASD emerged. Today, advocates call for using words like condition or neurological difference to remove the negative associations with the word disorder. While labels might change over time, there's one thing that stayed the same. The symptoms of autistic girls have not been widely recognized. A paper from 2022 reveals that quote, nearly 80% of girls with ASD are missed. And in February 2026, a study from Sweden published by the BMJ suggested that autism may occur at similar rates in males and females, but boys are four times more likely to be diagnosed in childhood. The study found that by the age of 20, diagnosis rates of men and women were almost equal. And the lead author of the study, Dr. Caroline Fe said, quote, "Our findings suggest that the gender difference in autism prevalence is much lower than previously thought due to women and girls being underdiagnosed or diagnosed late." According to the US Centers for Disease Control and Prevention, that's because, quote, "Girls with ASD have less well-recoognized symptom profiles or higher intellectual ability, better language skills, and perceived better social skills." But these perceived better social skills are often a result of girls masking or camouflaging their symptoms as they also often do with ADHD. Aid Canada, a national nonprofit that shares resources on autism and other intellectual disabilities says that quote 90% of females have engaged in camouflaging. This behavior may make it harder to identify autism in female presenting people. Some autistic people credit camouflaging for their social and vocational successes as they experience less stigma and marginalization in these spaces when their autistic traits are less pronounced. But camouflaging is exhausting for the individual and is a risk marker for suicide. Camouflaging also prevents or delays diagnosis for autism and can reinforce how sex and gender often shapes health outcomes for people with autism. Getting a timely diagnosis can help to identify additional conditions. Girls and women on the autism spectrum are more likely to experience seizure disorders, gastrointestinal disorders, headaches and migraines, Ella's down syndrome, endometriosis, autoimmune disease, asthma, and food allergies. Studies also show a connection between autism and PCOS, now PMOS. And a timely diagnosis can also help individuals better understand themselves. A 2023 study found that ASD and neurotypical females had a comparable number of sexual experiences they later regretted. But ASD females were two times more likely to have consented to an unwanted sexual event compared to their neurotypical peers. While research is catching up with reality, there is still so much misinformation. Back in September 2025, US President Donald Trump blamed mothers taking Tylenol during pregnancy for autism. And this wasn't the first time that mothers have been blamed for this condition. In the 50s, so-called refrigerator mothers were blamed for being emotionally cold and causing their children's autism. In the 1990s, a doctor blamed the MMR vaccine for causing autism. Even though his paper was retracted and his medical license revoked, the belief that the measles vaccine could cause autism persisted. While Canada successfully eliminated measles in 1998, we lost our elimination status in 2025. Back to Julie now to talk more about refrigerator mothers.

冰箱母亲的污名

Nam Kiwanuka: 人们普遍很喜欢责怪母亲。这太容易了,不是吗?有些人甚至把责任推到母亲身上,一直推诿到孩子成年。

Original English

Nam Kiwanuka: People just love blaming mothers generally. It's just so easy, isn't it? Um, some people blame mothers all the way into adulthood.

Julie Green: 是的,这大概是在上世纪 50 年代。他们当时对自闭症一无所知,也不明白这里面很大一部分是遗传的。所以他们理所当然地把这两者联系起来,认为情感冷漠的母亲最终导致了孩子的自闭症。而研究和科学花了相当长的时间来反驳这一观点。这个观念根深蒂固的时间远远超过了它本该存在的时间,这也是非常令人遗憾的。

Original English

Julie Green: Um yeah, so this was um I guess in the in the 50s they they didn't really understand anything about autism. They didn't understand that so much is is hereditary. Um so of course they they made this connection that well mothers who were emotionally cold ended up um causing the child's autism. And it took quite a while for that idea for you know research and science to disprove that and it just it just took hold for way longer than it should have and that's um...

Nam Kiwanuka: 而当时针对所谓的“冰箱母亲”,有一种被称为“Parent Talk To Me(父母跟我说话)”的解决方案。那是什么?

Original English

Nam Kiwanuka: well the solution for that the solution for this refrigerated mother was something called a parent talk to me parent talk to me. What is that?

Julie Green: 哇,你把我带回了那个时代。我已经有一段时间没有写和探讨这些了。那是指……当时一些孩子实际上被强行从他们的家庭中带走。在现在看来,这有多么可怕可想而知。而且重点是,许多这些母亲也许并没有以人们期望的方式扮演母亲的角色。坦白说,很多母亲自己很可能也是自闭症患者。所以她们被断定为情感冷漠,孩子也因此被夺走。这真是令人震惊。

Original English

Julie Green: I see you're taking me back. It's been a while since I've uh written and and done all this. that was um some children were actually forcibly removed from their families. Um which you can only imagine how horrific that is now. Um and the point is too many of these mothers maybe weren't performing motherhood in the way that it was. Many were probably autistic quite honestly. Um, and they weren't performing motherhood in in maybe the way that was expected. So, they were assumed to be emotionally cold and they had their children taken away. It's it's shocking.

Nam Kiwanuka: 我还有几个问题想问。我想花点时间谈谈书中关于同理心的那一章,因为我觉得那一部分写得太美了。你写道:“关于自闭症患者最伤人的刻板印象之一——尽管还有很多其他成见——就是我们缺乏同理心。其实并不是自闭症患者不关心别人。我们极其关心。更确切地说,是我们并不总是按照世界的标准来表达同理心。” 你能详细谈谈吗?

Original English

Nam Kiwanuka: Um, I have a few more questions to ask. Um, I wanted to spend a little bit of time on the chapter on empathy because I thought that was just so beautifully written. Uh, you write, "One of the most hurtful stereotypes about autistic people, there are many, is that we lack empathy. It's not that autists don't care about others. We care tremendously. It's more that we don't always enact empathy according to the world's standards." Can you tell me more about that?

Julie Green: 是的,我想这也是我自己曾经内化的偏见之一。因为有些人并没有以传统的方式表现同理心。有些人则表现得太多了。或者我觉得它被放错了地方,或者它没有以符合社会期望的方式表达出来。我在书里也谈到了这一点。比如,我失去了一位非常亲密的祖母,但我当时觉得自己并没有太多反应,我对自己非常苛刻,心想“我怎么了?我是个怪物吗?” 有时候只是处理时间的问题,仅仅是我们处理事情的方式不同。所以,我认为研究已经证明了——虽然我不认为那个研究写在了书里——但关于……哦,我可能会说错,同理心有两种类型。一种是你如何感受同理心,另一种是你如何表现出同理心。研究发现,自闭症患者在内在的体验式同理心上展示出完全相同的水平。我们不同的地方在于我们表演和展示同理心的方式。当然,人们总是非常急于去评判。如果你没有以正确的方式展现出同理心,那么你看起来就是冷漠的,或者无情的,或者麻木不仁的,或者看起来像是在小题大做。你知道,比如当我失去了我的宠物时,我度过了一段非常艰难的时期。自闭症患者往往对动物表现出像对人类一样深厚的依恋。但我当时在想,“这太不平衡了,相比失去祖母,我的狗去世让我更加崩溃、悲痛欲绝。” 但一切只是以不同的方式和形式表现出来罢了。你会因此招来很多羞辱感,我自己也内化了很多羞耻感。我认为我要么没有以被认可的方式展现同理心,要么表现得太过了,或者对我不该投入这么多感情的事情反应过度,要么就是表现得不够,或者没有在对的时间点表现出来。这很不幸。因为我们对于悲伤、什么是可接受的、什么是不可接受的,有很多社会建构的标准。这很不幸,因为这又是自闭症患者长期背负的沉重枷锁,我认为很多人仍然深信我们缺乏同理心。

Original English

Julie Green: Yeah, and again, this was, I think, something I had internalized as well. Um because I mean some people don't don't show it in conventional ways. Some people have too much of it or I feel like it's it's misplaced or it doesn't come out in the way that's socially acceptable. Um and I talk about it in the book. For instance, I I lost my grandmother that I was very close to, but I felt I didn't react much at the time and I was very hard on myself thinking like what is wrong with me? Am I a monster? Um sometimes it's just processing times and just the way we process things is different. So it's um I think what they have proven as well I don't think the research is in the book but in terms of um oh and I'm going to get it wrong there's there's two types of empathy. So one is um how you experience empathy and one is sort of how you act empathy. So autistic people were found to show exactly the same levels of you know experiential whatever I forget the actual term of empathy whereas where we we're different was in the way we were performing it and showing empathy. And of course though people are like so quick to judge. Um if you're not displaying empathy in the right way then you look you look cold or you look unfeilling or you look insensitive. um or you just look like melodramatic and you know like I had a really difficult time when I lost my pet and you know autistic people tend to be just as attached to the pe our animals as they are with our people but I was thinking this is just so offkilter I'm way more destroyed and griefstricken over my my dog than I am my grandmother but it was all just in different ways and shapes that it came out and you get a lot of shame around that and I internalized a lot of shame thinking I'm not I'm not performing empathy in an accepted way is either way too much in a way or you know over something that I shouldn't be feeling so much about or it's not enough or it's just not on the right timeline. Um and that's unfortunate. we just have so many social constructs around around grief and what's acceptable and what's not acceptable. Um, and that's that's unfortunate because again this is something that's really dogged autistic people and a lot of people I think still still really buy into that idea that we we lack empathy.

时代的自闭症恐慌

Nam Kiwanuka: 我想读另一段你写的话。你写道:“自闭症成了我们这个时代的妖怪(Boogeyman)。这似乎是发生在你孩子身上最糟糕的事情,一种显然比死亡或者因为某种迄今为止已被根除的疾病而毁容还要糟糕的命运。” 父母们成了直言不讳、强烈反对疫苗以及他们孩子饮食或环境中其他所谓毒素的反对者。像往常一样,妈妈们发现自己站在了这场看似道德十字军东征的最前线。为这本书做了这么多研究,同时作为一名身在谱系之上、抚养着一个谱系孩子的母亲,你认为关于自闭症,最被误解的是什么?

Original English

Nam Kiwanuka: Um, I I want to read something else that you wrote. Um, you write, "Autism became the boogeyman of our times. The worst possible thing that could happen to your child, a fate apparently worse than death or disfigurement from some hitherto eradicated disease." Parents became fierce and outspoken opponents to vaccines and other supposed toxins in their children's diet or environment. As usual, moms found themselves at the forefront of what appeared to be a moral crusade. Having done the research for this book and also being a mom on the spectrum with a child on the spectrum, what do you think is most misunderstood about autism?

Julie Green: 哦,天哪,太多了。同理心是我们刚刚谈到的大问题之一。另外就是,关于自闭症患者能力的上限。其实我们和常人一样,是有血有肉、复杂多面的人。不幸的是,很多时候在媒体中我们并没有被那样描绘。我认为,除非人们的生活中真正有一个自闭症患者,并看到他们是多维度的人,否则我们只能被困在这些刻板印象中。比如,人们认为自闭症患者要么是个学者综合征患者(Savant),是个了不起的神经外科医生什么的。或者走到另一个极端,认为我们是人类的灾难。你最好不要去阅读某些新闻下的评论区,因为不幸的是人们依然会这样说:“我宁愿希望我的孩子死掉,也不愿他患有自闭症。” 我真读到过这样的话。这恰恰表明,尽管我们在提升认知、推进神经多样性运动方面似乎取得了很多进展,但未来的路依然漫长。许多人不幸地仍然紧抓着许多非常落后的观念不放,他们宁愿让我们倒退回那个把自闭症患者制度化收容的时代,宁愿让我们从社会上消失。

Original English

Julie Green: Oh, wow. Gosh, there's so many. I mean, the empathy was the big one that we touched on. I mean, just the the capacity of, you know, what's what's possible that we're we're complex humans like anybody else. Um, and unfortunately a lot of the times in the media we're not portrayed that way, you know, and I think unless people have someone who's autistic in their their lives and they they really see them as multi-dimensional people, we're stuck with these these stereotypes that someone's a savant um you know, some amazing neurosurgeon or whatever. um or um you know on the flip side that we're just a blight on humanity and you know you don't want to read the comment section on some things because unfortunately people will still say this like I would I would hope I would hope my child is is dead then has autism. I've read it. It just shows that for all the awareness and all the forward progress we feel like we've made in terms of neurodiversity and this this movement um there is still a long way to go and a lot of people unfortunately are still holding on to a lot of very backwards ideas and would sooner have us back in the ages of having people in institutionalized and not having people out there.

Nam Kiwanuka: 你确实写到了这种恐惧。我想念一下书中最后一段。你写道:“最让我感到恐惧的是其他人:其他孩子、老师、父母、政客。自闭症患者面临着更高的被欺凌和受害风险。那些非二元性别或性别不认同的人被进一步边缘化,身心健康状况更差,获得医疗保健的渠道更少,并且与普通人群相比,更容易遭受性侵犯、性骚扰和言语骚扰。” 作为一名母亲,也是一个做过研究的人,你会对那些怀疑自己或者自己的孩子可能处于谱系上的人说什么?

Original English

Nam Kiwanuka: Well, you do write about this uh fear and I want to read one one last passage from the book. You write, "What scares me most are other people, other children, teachers, parents, politicians. Autistic people face an increased risk of being bullied and victimized. Those who are non-binary or gender non-conforming are further marginalized, experiencing poorer physical and mental health, less access to health care, and a greater likelihood of sexual assault. sexual harassment and verbal harassment compared with a general population. As a mother and also a person who has done the research, what do you say to someone who thinks they may be on the spectrum and may or may not also be raising a child on the spectrum?

Julie Green: 这是一个很艰难的问题,对吧?我们生活在一个非常可怕的时代,有时闭口不谈是一种诱惑。你以为只要不给孩子贴上标签,就能保护他们免受伤害。但事实是,他们无论如何都会受到污名化的对待。你知道,人们很容易察觉到差异。我记得在儿子上幼儿园的时候,我在班里做志愿者,纯粹是为了帮他、支持他。当时甚至连幼儿园那么小的孩子都会跑过来问我:“他为什么那样做?他为什么不回答我?他为什么会这样?” 他们立刻就能看出来,人们总是对“不同”异常敏感。如果我们不直呼其名,指出这是自闭症,就会出现其他难听的称呼。他们会被欺凌,会被称为怪胎。因此,对我来说,与儿子以及我遇到的其他孩子进行这样的对话非常重要,我要打下基础,告诉他们:“是的,他确实与众不同,这就是他运转的方式。” 我们总是把它比作不同的操作系统,比如 Mac 对抗 Windows。如果我们试图忽略这一点,人们只会被进一步异化。我认为我们越是将它常态化,让自闭症患者被大家看见,让大家真正把它看作一个谱系,这其中的污名感希望也会减少。这就是我写这本书的原因。父母们总是想要保护自己的孩子,但你不可能把他们跟整个世界隔离开来。更可怕的是,在很多方面,我们现在的处境仿佛正在开历史的倒车。

Original English

Julie Green: Well, that's the hard thing, right? We live in really scary times and it can be it can be tempting to just sort of bury your head thinking you're going to protect your child from harm and by not stigmatizing them, but the fact is they're going to be stigmatized anyway. You know, people people pick up on difference. I I know from just being in my son's class in kindergarten, people would run up to me. I was volunteering just as a means to sort of help him and support him. And all these children were coming up to me as young as kindergarten going, "Why is he doing that? Why isn't he answering me? Why is he being like that?" Um they knew right away like people just latch on to difference right away. And if and if we don't if we don't call it what it is, um there'll be other names, you know, they're they're they'll be bullying, they'll be called a freak. Um, so it was important for me to have those conversations with my son and with other kids that I encountered to try to lay the groundwork to to say yes, you know, he absolutely is different. This is sort of how he ticks and this is, you know, this is why it's like we always likened it to like a different operating system, you know, like Mac versus Windows or whatever. um as opposed to because the more we try to ignore this people will just be otherred and I don't know I think the more we we normalize it and we we have people u autistic people who are visible and we can generally really see it as a spectrum and hopefully it'll be less stigmatizing. I mean that's why you know that's why I wrote the book. I mean parents all we want all want to protect our children but you you can't protect them from the world. Um and it is it is quite scary now that it does feel like we're going backwards in so many so many respects.

Nam Kiwanuka: 但仍有很多人想法不同。所以我们必须继续探讨它,让自闭症被社会看到。非常感谢你写了这本书。我认为这将会拓展公众的讨论边界,而且它也探讨了历史,因为这是现实中正在发生且已经发生过的事情。我的最后一个问题是,在你生命的大半时间里,你因为真实的自己而受到评判。但对你最苛刻的人可能就是你自己。你在书中写道,“我搞砸了。我总是把事情搞砸。” 写这本书在哪些方面帮助你更好地理解了自己?

Original English

Nam Kiwanuka: Um but a lot of people think differently. So we have to keep uh talking about it and making autism visible. Well, thank you so much for writing the book. I think it's going to expand the conversation and it's also um goes into history as this is something that happens and has happened. Uh my last question to you is that for most of your life you've been judged for who you are. Uh but you were probably the hardest on yourself. In the book you wrote that quote, "I screwed up. I always screwed up." In what ways did writing this book help you to understand yourself better?

Julie Green: 你知道,这很艰难。回忆录是个奇妙的东西。人们总是问,“哦,你是怎么面对那些的?” 但其实,那些写起来最痛苦的部分,也是在写作中获得最强烈释放感的部分。所以在很大程度上,重温那些童年、青春期或者刚成年的经历,真的帮我重新审视了那个女孩、那个年轻女人,让我能对她给予更多的宽容和同情。我想这也是带我回到过去,回到那个我还没觉得自己是个“异类”之前、在我意识到自己与众不同并封闭自己之前的地方。因为那才是我所向往的。你看,我儿子其实就不怎么伪装自己,他就是原本的他。不管是好是坏,在某些方面如果他能伪装可能会更容易,但这并不健康。而我非常喜欢看到他展现出真实的、有趣的自己,书里有很多幽默的地方,因为他真的很搞笑。我认为这是一份礼物,我永远不希望他被迫把自己装进某个“隐喻的盒子里”。那太艰难了。但现在我正努力从那个盒子里走出来,找回原本的自己。如果你从小就不觉得自己可以做真实的自己,你就会失去自我。如果你伪装了这么久,你甚至都不知道那个真实的自己是谁。所以,这是一个不断“反学习(Unlearning)”的过程。

Original English

Julie Green: you know, it's difficult. Um, memoir is such an interesting thing because people like, "Oh, how did you deal?" Like the parts the parts that were the most difficult to write were also the most cathartic to write. So in a lot of ways revisiting some of those instances from my own childhood or you know adolescence early early adulthood um I think it really helped me to look back on that girl or young woman and just give her more grace and compassion and I think get back to that place before I knew before I felt otherred before I realized I was different and and kind of um cut myself off because I mean that's what I would love like my my son doesn't really mask he is who he is which you know for better or for worse like in some ways it would be easier if he could mask but it's not healthy and I I love seeing that he's his authentic funny like there's so much humor in the book because he's so funny um and I I just think that is such a gift that I would never want someone to have to put themselves into this like metaphorical box, you know, and it's just it's very hard, but I'm I'm trying to get out of that box now and to get back to the person I am. Uh, and it's you you lose yourself if you've if you've grown up um not feeling you could be yourself. you you don't even and you've masked so along you don't even quite know who is that person. So is this whole process of unlearning.

Nam Kiwanuka: Julie,能邀请你来播客真是太好了。非常感谢你腾出时间。在书中,我觉得写“猫王(Elvis)”的那一章真的让我笑出声来。非常感谢你花时间和我交谈。你还有什么想补充的吗?

Original English

Nam Kiwanuka: Julie, it's been really lovely having you on the podcast. Thank you so much for making time for us. And uh in the book, I think the chapter on Elvis um had me like laughing out loud. Uh thank you so much for taking time to speak with me. Uh is there anything else that you'd like to add?

Julie Green: 我只是非常高兴能来到这里,和你交谈真的非常棒。

Original English

Julie Green: I'm just um so glad to be here and it's it's really great to talk with you.

Nam Kiwanuka: 这里是《Mistreated》。感谢收听。您可以关注我们的节目,无论您在哪里下载播客,都能在每次有新一集播出时收到通知。我们非常乐意听取您的反馈。您可以写邮件到 mistreatedodcast@tvo.org,或通过社交媒体联系我。感谢您发来的所有邮件和评论。我们非常感谢大家对播客的反响。我想读一条我们在讲述“子宫内膜异位症为何表现得像癌症”那期节目里的评论。Sarah 写道:“感谢你们展开了这场对话。我今年 31 岁,我已经受折磨 18 年了。我上个月刚做完手术,并确诊为三期子宫内膜异位症。这是一种挣扎。我很高兴能得到一个答案,而且我非常感激那些愿意倾听患者心声、并愿意学习和寻找新途径来帮助我们康复和管理这种疾病的医疗保健专业人员。感谢你们制作这期视频。” 本周的节目由 Tiff Lamb 和我制作,Colin Kish 剪辑。数字短片由 Ariana Longley 负责。摄像由 Max Tussy 和 TVO 工作室团队负责。提词器由 Christy Mloud 负责。制作支持来自 Jonathan Hallowell 和 TVO 的数字媒体服务团队。Lorie Fuse,数字执行制片人。Vanessa Casease,媒体副总裁。非常感谢收听。

Original English

Nam Kiwanuka: This was Mistreated. Thanks for listening. You can follow our show wherever you download your podcast so you can get notified each time a new episode is available. We would love to hear your feedback. You can write me an email at mistreatedodcast@tvo.org or reach out to me on social media. Thank you for all of your emails and comments. We appreciate the response to the podcast. I'd like to read a comment from our episode on how endometriosis behaves like a cancer. Sarah writes, "Thank you for holding this conversation. I'm 31 years old and I've been suffering for 18 years. I just had my surgery last month and properly diagnosed with stage three endometriosis. It's been a struggle. I'm happy to have an answer, but I'm grateful for the health care professionals who are listening to their patients and willing to learn and find new paths for us to heal and manage this. Thank you for having this video. This week's episode was produced by Tiff Lamb and me and edited by Colin Kish. Digital shorts by Ariana Longley. Camera work by Max Tussy and the TVO studio crew. Teleprompting by Christy Mloud. Production support from Jonathan Hallowell and TVO's digital media services team. Lorie Fuse, executive producer of digital. Vanessa Casease is vice president media. Thanks so much for listening.

📌 文中提及的人物和组织

媒体/书籍: Motherness

关键字: autism-spectrum gender-bias social-masking neurodiversity stigma