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[1]原注:像高功能低功能这类术语本身就存在问题。例如,威廉姆斯和格兰丁现在可能会被某些人归类为高功能,但她们都说,在发育早期,她们想说什么词语时很难通过口语表达出来。甚至直到威廉姆斯的第一本书出版时(Williams,1989),她都要让记者们事先准备好要提的问题,她打字作答,再念出所打的文字内容并在此基础上进行延伸。所以,高功能低功能这类术语并未能抓住孤独症个体乃至其他任何人在交流方式上表现出的复杂性。

[2]原注:英国桂冠诗人特德•休斯(Ted Hughes)担任此次竞赛的评审主席。W.H.史密斯集团董事长西蒙•霍恩比(Simon Hornby)爵士,为获奖选集的图书珍藏版《灵活的手》撰写了序言。

[3]原注:这里引用的是凯纳论文1985年的重印版。

[4]原注:虽然,我见到过很多孤独症人接不住球,但我也见到过能接住球的——如果把球直接扔给他们,而他们又能下意识做出接球的动作。但如果把球抛向空中,好比一个腾空而起的球,需要跑过去才能接得住,他们就觉得做不到。他们当中有些人似乎可以执行机械的、无意识的行为(即不需要思考行动步骤的行为),但完成刻意的、有意识的行为(即需要思索行动步骤的行为)就很成问题。

[5]原注:近年来,阿斯伯格这一名称用来特指这样一些具有孤独症特征的孩子:“即使他们的语言发展开始得较晚,又即使他们的语言在用来交流时明显显得怪异,他们通常能在五岁前开始流利说话;而在互动交往中,他们总会表现出社交上的笨拙。”

[6]原注:仿说的(echoed)和模仿语言(echolalia)经常用于孤独症领域,指一个人重复别人所说的语言这一现象。这指的有可能是对刚刚听到的一个短语的重复,或者是对一段时间之前,甚至是几年前,听到别人说的一个短语或一句话的重复。

[7]原注:对质性研究者来说,凯纳和阿斯伯格关于孤独症的解释还是颇具吸引力的,因为他们采用归纳法来理解他们的病人。当然,在一定程度上说,他们是不得已而为之。他们没有现成的框架可以用来描述他们观察到的这些孩子。他们意识到如果现行的残疾类别都不适用,而他们又想取得一个新的实用的诊断类别,唯一可行的手段就是细心的观察,以及带保留性质的判断、分析和阐释。

[8]译注:“NT”是“Neurotypical”的简写,可直译为“神经发育正常的人”。这个词由孤独症人士发明,用来特指所谓的“正常”人。20世纪90年代,在孤独症权益运动(Autism rights movement,ARM)兴起之际,孤独症人士创造了“神经发育正常的人”(neurotypical)、 “神经发育多样性”(neurodiversity )等词汇,提出孤独症是神经发育多样化的一种表现,而非内在的病理缺陷;提倡将孤独症视为一种“不同”(difference)来尊重,反对将其视为疾病或障碍去进行治疗;希望社会能更加接纳孤独症人的行为表现,理解他们对周围世界的体验,并支持他们以自己的方式融入社会。

[9]原注:这一结论似乎被发表在《大脑与语言》(Brain and Language)杂志上的一项研究所证实。在该项研究中,科研人员修改了心理理论实验的测试条件,他们让孤独症人打出自己的应答,而不是说出来。在这篇题为“孤独症人的交流能力:注意力缺损之证据”的论文中,研究人员(Bara,Bucciarelli,Colle,2001)报告说他们招募了“20名年龄在七到十八岁之间[平均年龄:十一岁,根据DSM-IV诊断标准],被诊断为孤独症的男性聋童”。他们都能通过打字进行交流(p.226)。在进行真正的“心盲测试”研究之前,实验人员让每一位孤独症被试和对照组成员(非残疾人士)参加了“认知测验”,包括按顺序给图片排序,以及让“被试注视一个序列的图片,并用一套卡片中的一张完成图片排序”,以检测记忆力和注意力(p.227)。在这些预试中,孤独症被试比非残疾对照组成员的表现差很多。然而,在做真正的心理理论测试,被问及莎莉和安妮类型的问题时,孤独症被试实际上比非残疾被试表现得还要稍好一些。巴拉和同事引述了其他证实孤独症人得益于“计算机指令和互动游戏”的研究(例如,Heimann et al.,1995),认为他们自己研究中的被试之所以能在心理理论的测试任务上有成功表现,可能是使用了电脑打字和书写形式的结果,这样能帮助这些“儿童将注意力集中在他们所要完成的任务上”(p.233):
可以确定的是,在常规情况下,孤独症人的交流表现受到了极明显的干扰;然而,一旦获得注意力和情感上的支持,他们的表现即可得到复原。我们的实验结果否定了孤独症人缺乏交流能力的假设。(p.234)
虽然,巴拉及其同事所提供的解释不如在格拉斯哥会议上进行演讲的孤独症人所表述的更为细致入微,但二者的推论却如出一辙。

[10]原注:汤姆森(Thomson,1997)在她的《离奇古怪的身体:美国文化及文学中的肢体残疾塑造》(Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature)一书中首次使用常人一词,意指社会构建的“正常人”的概念。我在这里以及本书其他部分采纳此词用法,为的是提醒人们注意,“正常”是一个纯粹的人为构建的观念,它的创造和应用极为主观,它的含义也在不断变化着。

[11]译注:《浮出水面:贴上孤独症标签》原书名为Emergence:Labeled Autistic,又译为《星星的孩子》。

[12]译注:《用图像思考:与孤独症共生》(Thinking in Pictures: My Life with Autism,Grandin,1995)中文简体版2014年由华夏出版社出版。

[13]译注:《男孩肖恩》(There’s a Boy in Here: Emerging from the Bonds of Autism)中文简体版由华夏出版社2015年出版。

[14]原注:在编辑此书过程中,理查德告诉我他觉得加上“我不是弱智”这句话有问题。他不想中伤仍留在护理中心的那些人。关键是,这些中心已基本演变成当代的休闲娱乐室。当初在精神病院等隔离机构的病房,这些人与世隔绝;他们会被安排做些手工或参加其他一些“活动”;而所谓工作,如果有事可做的话,往往只是些简单的活计。现在这些中心与隔离机构也没有什么太大不同。在我看来,理查德说“我不是弱智”这句话并不是在对中心的其他人进行价值判断,但我很赞赏他的敏感。

[15]原注:他后来被诊断患有圆锥角膜。

[16]原注:亦即意识到他人有独立于孤独症人自己的观点之外的观点。

[17]原注:我并不想暗示说,那些没能欣欣向荣成长起来的儿童,从某种角度上说是母亲拙劣或不当的养育方式的牺牲品。毕竟,父亲在抚育子女的过程中也可以扮演重要角色,还有学校和其他社会环境也都有影响。但当前与残疾相关的社会实践中的确存在着性别分化的特点,我在此提及是希望引起人们的关注。已有人写过有关这一实践中性别特质的论文和书籍,并阐述了这样的事实——成功的经验取决于某种程度的中产阶级特权,以及抵制主流的意愿,因为对残疾占主导地位的专业论述往往极为悲观(Harris,2003; Morris,1991; Traustadottir,1991a; 1991b)。父母,特别是母亲所扮演的角色,在许多被称为高功能孤独症人士的自传中凸显了出来,所以它在那些所谓“低功能”人士的生活中呈现也丝毫不足为奇。同时,也有文献显示个体寻找到其他人和其他机会支持其发展的例子(参见Williams,1989,1994)。