A study conducted at Yale found that in adults with autism or Asperger’s, the region of the brain activated during face processing corresponded to the region activated in nonautistic subjects during object processing. Autistic people with fixations, however, may recognize those in the area where most people register faces. So one autistic boy had the same region in his brain light up for his mother as for a teacup. But he was enthralled by Japanese Digimon characters, and when he saw those, the area where most of us process our intimate connections suddenly flashed on.
妈妈 = 茶杯,数码宝贝 = 亲密,这妈得多难过
One clinician told me about a patient who at age ten ran into the street in the middle of traffic, nearly getting run over and causing an accident. His mother said, “But I told you to look both ways before you step into the street!” He said, “I did look both ways.” A psychiatrist I met described a patient who was a math genius, IQ 140, fully verbal, but socially disabled. When the pretty woman at the counter at McDonald’s asked what he’d like today, he said, “I’d like to touch your crotch, please.” He was completely befuddled when the police were called; he had answered her question and said “please.”
虽然早就听说阿斯伯格人倾向于理解字面意思,但也没想到能字面到这个地步…
Cece has actually spoken four times in her life, and every time the words were appropriate to the situation. When Cece was three, Betsy gave her a cookie; she pushed it back at her, saying, “You eat it, Mommy.” Jeff and Betsy exchanged glances and waited for their world to change. Cece said nothing more for a year. Then one day Betsy stood up to turn off the TV, and Cece said, “I want my TV.” At school, three years later, she turned on the lights and said, “Who left the lights on?” Then one day a puppeteer visited Cece’s class; when he asked, “Hey, kids! What color is the curtain?” Cece responded, “It’s purple.” The capacity to formulate and deliver these sentences suggests a tantalizing lucidity below the silence.
我突然想起小时候听到的一个笑话,说是一个小孩子一直不开口说话,家人都以为他哑巴,直到有一天吃饭的时候他说:菜太咸了。家人都惊了,问他之前怎么都不说话,他说之前没有什么好抱怨的。
我现在感觉这不是个笑话,这小孩是不是自闭症…
In this world of infinite variety, Catherine was just another variation on the idea that the only normality is nonnormality.
“I was so sure I was the parent who was not going to be able to deal with a child who was in any way different,” she said. “I was just relieved to love her. She was very lovable. All my friends had these children they thought were perfect, and then they’ve had to come to terms with their children’s limitations and problems. I had this baby everyone thought was a disaster, and my journey has been to find all the things that are amazing about her. I started off knowing she was flawed, and all the surprises since then have been good ones. She’s one of the nicest, kindest, most thoughtful, sensitive people that I’ve ever met. She’s funny. She always highlights the positive; I don’t know how much of that is personality or if that’s Down syndrome. When she makes up her mind that she’s not doing something, that is that, which is also typical of Down syndrome.”
I know from personal experience how kind sympathy can be a noxious prejudice; I do not care to spend time with people who pity me for being gay, even if their sympathy reflects a generous heart and is offered with egregious politesse.
“Prenatal diagnosis reinforces the medical model that disability itself, not societal discrimination against people with disabilities, is the problem to be solved. Prenatal genetic testing followed by selective abortion is morally problematic and it is driven by misinformation.”
这一章在讲一个有唐氏综合征的孩子,他妈妈在育儿方面非常积极,从小给他各种丰富的刺激,促进智力的发育,结果他就真的很聪明,七岁的时候会用 12 种语言数到 10,讲话没问题,在学校里也是模范学生。以上都是他付出了比常人多得多的努力的结果。然而渐渐地就发现他在理解人类社会方面问题很大,比如他会到处拥抱陌生人,会想开一家店专门告诉顾客某部电影的主旨。学校里的孩子们不喜欢他,工作之后因为独特的工作方式也很不招人待见。他比绝大多数唐氏综合征的人都聪明,但是对健全人类来说他又太笨了,所以就完全没有同类。
但看到书中的描写我没有觉得他很笨,他就是没有正常人那些条条框框,比如这一段:
Jason found his first job at Barnes & Noble, tearing the covers off magazines destined for recycling. He found it excruciatingly boring and kept making up ways to amuse himself. When his supervisor insisted that this was not his job, he replied, “I’m an independent adult person and I make my own decisions”—showing the very spirit that Charles and Emily had fostered, applied in exactly the wrong context. He was fired soon thereafter.
哇 “I’m an independent adult person and I make my own decisions” 这句话哪里说得不对吗??
还有他妈妈纠结自己坚持把孩子教育成高功能有没有错的这一段:
A couple of years later, Jason was depressed again, and Emily reflected with concern on her original attempt to make Jason the highest-functioning DS kid in history. She said, “With perfect hindsight would I have done it differently? His intelligence has enriched our relationship so much and I would never want to give that up, but I’ll admit that lower-functioning Down kids are happier, less obsessed with how unfair it is. They have an easier time in many ways, but is that better? He takes such pleasure in words, in using his mind.” I went to a reading at Barnes & Noble that Jason and his friend did when their book was reissued. Jason answered the audience’s questions with fluency and poise. Emily was aglow and Jason was aglow, their pleasure in his intelligence a mutual delight.
总之感觉是一个很好的人,是社会不够接纳他。
“Raising a kid like Jason,” she said, “the kid is the least of the challenges. Jason was there to put his arms around me when the bureaucracies had nearly killed me.” Services are seldom available to anyone who does not have the wherewithal to battle agencies. Doing so often requires education, time, and money—which is a painful irony given that these services are intended to benefit people who may be short on all three.