n*****s
发帖数: 343 | 1 【 以下文字转载自 Parenting 讨论区 】
发信人: hopenicole (Nicole), 信区: Parenting
标 题: 一个自闭孩子妈妈的亲身经历和感受（中）
发信站: BBS 未名空间站 (Fri Nov 16 04:00:56 2012, 美东)
有不少网友前面curious的问，ASD kids到底什么样？这个没有标准答案，因为每个孩
子的个体差异太大了。Autismspeaks.org有些孩子的录像。很多孩子平时看着和别的孩
子没什么区别，也很active，甚至engaging，不是大家想象的缩在墙角里面低着头来回
晃动身体。但是，他们在生活里的challenge，是真实到不能再真实的。
我找到一个印度的官方给老师看的文件，有很多图片介绍ASD孩子daily的struggle，和
对老师的建议，怎么把ASD孩子成功地include进来classroom。http://www.thenationaltrust.co.in/nt/images/stories/Other_Publication/handbook_for_teachers.pdf
医生诊断时，主要是看是不是communication（注意，是communication，不是language
），social，和behavior三大方面都有比较大的问题。我摘抄一段圈内大家相互推荐鼓
励的文章，是个ASD妈妈写的。其中讲到一些ASD孩子们眼里的世界。希望大家看完后，
对这些特殊的，可怜的孩子们能够多一点点爱心和容忍。很多ASD孩子，看着是很漂亮
的正常孩子样子，所以他们melt down的时候，很多人第一自然的反应，就是家长惯的
。我们家长受到的斜眼，真的很多。。请大家以后在公共场合看见一个表现异常的孩子
，下意识的给他/她的父母飞去一个异样的眼神之前，能够停一下，想想这个孩子其实
很有可能是special need的孩子。。 | n*****s
发帖数: 343 | 2 发信人: hopenicole (Nicole), 信区: Parenting
标 题: Re: 一个自闭孩子妈妈的亲身经历和感受（中）
发信站: BBS 未名空间站 (Fri Nov 16 04:02:01 2012, 美东)
网上找到的中文翻译，比较拙劣，不明白的地方请参照原文。
孤独症孩子希望你知道的十件事
一、首先，我是个孩子，虽然我有孤独症，但孤独自闭并不是我唯一的特质，这也是最
重要的
我身上有很多特质，孤独自闭只不过是其中的一个，你不能只用这一个特质来定义
我。就如同你是一个有各种想法、感觉和能力的人，又怎么能只用其中的一个特质来定
义你？你胖、近视甚至还有些笨手笨脚，但这绝不是你的全部特点。
作为大人，对于怎样定义自己，你有一种控制权。假如你想要特别强调某种特质，
就会单独提出来说。然而作为一个孩子，我还在成长。你和我都还不清楚我具有哪些潜
力。只用一个特点来对我进行定义，那会存在很大的问题，因为你们所设定的期望值可
能太低了。如果我感到你认为我“做不到”，我自然就会产生这样的反应：那还有什么
必要去试呢？
二、我的感官知觉是失调的
这句话的意思是，在日常生活中，很多的影像、声音、气味和触碰可能不会让你注
意，但却会给我带来极大的痛苦。对我来说，周围环境常常充满敌意。你可能会觉得我
不去接触社会或者对你有了攻击性，可我这样做只是想保护自己。所以，到超市这样行
为的简单事情，对于我来说都可能像是身处人间地狱。
我的听觉可能非常敏锐。好几十个人同一时间说话，扩音器里轰隆隆地介绍着当日
的特卖品，商场音响系统中传出的音乐就像是哀嚎，收款机的哗哗声、咖啡磨豆机的嗞
嗞声、切肉机的刺耳声、婴儿的号哭声、手推车的咯吱声、荧光灯的嗡嗡声，我的大脑
根本不能过滤这些声音，这已经让我感觉超负荷了！
我的嗅觉也有可能非常敏感。生鲜摊位的鱼不新鲜，站在我们旁边的男人今天没有
洗澡，熟食摊位正拿热狗给人试吃，排队排在我前面的那个婴儿该换尿布了，有店员正
在第三排的过道上用氨水擦洗地板上的污渍。这些味道，都混杂在一起，我快要吐了。
因为我是个视觉导向的人，视觉可能会成为我最易受到过度刺激的感官。荧光灯不
仅过亮而且还发出嗡嗡声，整个房间一闪一闪的，弄得我的眼睛疼，闪耀的灯光让所有
的影像都仿佛在跳动，让我看到的画面扭曲，空间好像时刻都在改变。周围有太多东西
让我不能集中焦点（我可能会用“缩窄视线”的方法来应对），比如窗外闪动的影像，
天花板上旋转的风扇，还有走来走去的人们，这些都会使我的平衡感和本体觉受到影响
。我简直连自己的位置都弄不清了。
三、请记得将我“不肯”（我选择不要）和我“不能”（我做不到）分清楚
我不是不听话，而是听不懂你所说的话。当你在房间的另一头对我喊的时候，不管
喊的内容是什么，我听到的只是：“@#￥%*&比利￥#&*@#。”相反当你走过来，直接用
简单的话对我说：“请把书放在桌子上，比利。该吃午饭了。”这才能让我明白你要我
做什么，让我了解接下来将发生什么事。这样我才会比较容易理解并按照你说的去做。
四、我的思考方式非常具体，因此，我通过字面意义来解释语言
当你想对我说“不要跑”，嘴里说的却是“牛仔，拉住你的马”，这会让我觉得十
分困惑。不要对我说某件事是“小菜一碟”，结果我没有看到任何小菜，而你真正的意
思其实是“这件事情对你来说是很容易的”。如果你跟我说：“Its pouring cats
and dogs.”Its pouring cats and dogs.英文字面含义为“猫猫狗狗倾泄出来”，
其实是俚语，意思是“雨下得很大”。——编者注我会以为投球机里将扔出一堆猫和狗
来。请直接对我说：“雨下得很大。”
成语、俏皮话、歇后语、双关语、隐喻、暗示、讽刺，这些表达我都弄不懂。
五、我掌握的字词是有限的，请对我多一些耐心
因为我无法用我有限的词汇来表达我的感觉，所以自然没法告诉你。我可能饿了、
遇到了挫折，或者感觉到害怕困惑，但这些词超出了我的表达能力范围。这个时候请注
意我的身体语言，退缩、烦躁或其他动作都可能是事情出错的征兆。
不过有时情况也可能会相反：我可能会像个教授或者电影明星那样背出长篇大论或
整个剧本，完全超出了我这个年龄的人可能具有的能力。这时候你应当知道我把平时听
到的信息都记下来了，从而弥补我语言方面的缺陷，因为我知道别人对我说话的时候，
我应当有所反应。这些字句可能从书本、电视或者别人的谈话中来。这种情况叫做“仿
说”（echolalia）。我可能并不了解自己所说的内容或者使用的术语。我只知道，只
要回答就能帮自己解围。
六、语言对我来说比较困难，但我极能借视觉导向的
你与其给我说怎样做一件事，不如示范给我看，并且，请你做好一定的心理准备，
或许这样的示范要重复很多遍，因为不断重复同样的动作能够对我的学习有帮助。
图像式的日程表有助于我的日常作息。它就像我的专用手册，让我不再感到有压力
，因为我不需要去记接下来该做些什么，不同活动之间的转换也会比较顺畅，能够帮我
管理好时间，使我的表现比较符合你的期望。下面这个网站会提供更多的图像式日程表
方面的信息：www.cesa7.k12.wi.us/sped/autism/structure/str11.htm
即使我长大一些，也同样需要图像式的日程表，不过我的“表达能力”也有可能改
变。在我可以进行阅读之前，我需要的是配有照片或者简单图画的图像式日程表，等长
大一些后，我或许就能够用图画加上文字来进行学习，再过一段时间，可能只有文字就
可以了。
七、请关注我能做的事，而不是我做不到的事
我跟其他人一样，如果做一件事时一直被“纠正”，感觉自己做得不够好时，就没
办法在那样的环境中学习，哪怕这件事对我有很大的“帮助”。当我很确定如果去尝试
做一些新鲜事就会遭受批评的时候，我就会避免去这样做。所以，请尽可能地找出我的
一切优点，你一定会找到的。
通往成功的路不止一条，同样，做很多事情的方法也不只有一种。
八、请帮助我与社会进行互动
从表面上看，似乎我不想跟运动场上的其他孩子一块儿玩，但是有些时候我只是不
知道该怎样开始同别人交谈或者参与到他们的游戏中。如果你可以鼓励其他的孩子来邀
请我一起去踢球或者投球，或许我会很高兴地参与。
我不知道怎样解读人的面部表情、身体语言或者其他一些情绪，所以，如果你不断
地教导我怎样作出合乎礼仪的反应，我会非常感激你。比如，艾米丽从滑梯上摔了下来
，我可能会哈哈大笑，不过那不是因为我觉得好笑，而是我不知道怎样做才是适当的反
应。请你教我问她：“你还好吗？”
九、请努力确定引发我消极情绪的因素
当我出现发怒、崩溃、发脾气或类似这种状况时，其实我比你们还要害怕。出现这
些状况是因为我的某个感官超负荷了。如果你能找到让我崩溃的原因，那么将会避免这
种状况的发生。你可以做一份笔记，记录时间、人物、情境和活动，可能会从中发现某
些规律。
请你要记住，我的障碍，所有行为都是沟通的方式，它们会告诉你，我只是没有能
力用语言表达对某件事情的感觉。
爸爸妈妈，也请记住一件事：持续行为可能是由潜在的药物引发的。食物过敏或敏
感、睡眠以及肠胃不适，都可能严重影响我的行为。
十、请无条件地爱我
请不要有这样的想法：“如果他可以……就好了”“为什么他就是不能……”。就
像你也没有达成你父母对你的每一份期待，也不喜欢一直被提醒一样，我也不喜欢如此
。因为，有孤独症并不是我选择的，但是请记住，这件事发生在我的身上，而不是发生
在你的身上。如果没有你的支持，我几乎不可能拥有成功而独立的成人生活。但如果有
了你的支持和引导，结果可能会超乎你的想象。我向你保证，我是值得你这样做的。
最后请记住三个词：耐心、耐心、耐心。
请不要把我的孤独症看成是残障，请把它当做一种不同的能力。请跳出你可能受到
的视角限制，看到孤独症给我的天赋。
的确，我可能不善于跟人进行眼神接触或者交谈沟通，但是你注意到了吗？我不撒
谎，玩游戏时不作弊，不会说同学的坏话，不去批评别人。同样，我也成为不了下一个
迈克尔？乔丹，不过，由于我的眼光不同寻常，我会更多地去留心细节，或许我会成为
下一个爱因斯坦、莫扎特，或是梵高。
因为，他们也有孤独症。 | n*****s
发帖数: 343 | 3 发信人: hopenicole (Nicole), 信区: Parenting
标 题: Re: 一个自闭孩子妈妈的亲身经历和感受（中）
发信站: BBS 未名空间站 (Fri Nov 16 04:01:18 2012, 美东)
Ten Things Every Child with Autism Wishes You Knew
by Ellen Notbohm
Some days it seems the only predictable thing about it is the
unpredictability. The only consistent attribute -- the inconsistency. There
is little argument on any level but that autism is baffling, even to those
who spend their lives around it. The child who lives with autism may look "
normal" but his behavior can be perplexing and downright difficult.
Autism was once thought an "incurable" disorder, but that notion is
crumbling in the face knowledge and understanding that is increasing even as
you read this. Every day, individuals with autism are showing us that they
can overcome, compensate for and otherwise manage many of autism's most
challenging characteristics. Equipping those around our children with simple
understanding of autism's most basic elements has a tremendous impact on
their ability to journey towards productive, independent adulthood.
Autism is an extremely complex disorder but for purposes of this one
article, we can distill its myriad characteristics into four fundamental
areas: sensory processing challenges, speech/language delays and impairments
, the elusive social interaction skills and whole child/self-esteem issues.
And though these four elements may be common to many children, keep front-of
-mind the fact that autism is a spectrum disorder: no two (or ten or twenty)
children with autism will be completely alike. Every child will be at a
different point on the spectrum. And, just as importantly – every parent,
teacher and caregiver will be at a different point on the spectrum. Child or
adult, each will have a unique set of needs.
Here are ten things every child with autism wishes you knew:
1. I am first and foremost a child. I have autism. I am not primarily "
autistic." My autism is only one aspect of my total character. It does not
define me as a person. Are you a person with thoughts, feelings and many
talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (
uncoordinated, not good at sports)? Those may be things that I see first
when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want
to single out a single characteristic, you can make that known. As a child,
I am still unfolding. Neither you nor I yet know what I may be capable of.
Defining me by one characteristic runs the danger of setting up an
expectation that may be too low. And if I get a sense that you don't think I
"can do it," my natural response will be: Why try?
2. My sensory perceptions are disordered. Sensory integration may be the
most difficult aspect of autism to understand, but it is arguably the most
critical. It his means that the ordinary sights, sounds, smells, tastes and
touches of everyday that you may not even notice can be downright painful
for me. The very environment in which I have to live often seems hostile. I
may appear withdrawn or belligerent to you but I am really just trying to
defend myself. Here is why a "simple" trip to the grocery store may be hell
for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The
loudspeaker booms today's special. Musak whines from the sound system. Cash
registers beep and cough, a coffee grinder is chugging. The meat cutter
screeches, babies wail, carts creak, the fluorescent lighting hums. My brain
can't filter all the input and I'm in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn'
t quite fresh, the guy standing next to us hasn't showered today, the deli
is handing out sausage samples, the baby in line ahead of us has a poopy
diaper, they're mopping up pickles on aisle 3 with ammonia?.I can't sort it
all out. I am dangerously nauseated.
Because I am visually oriented (see more on this below), this may be my
first sense to become overstimulated. The fluorescent light is not only too
bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes.
The pulsating light bounces off everything and distorts what I am seeing --
the space seems to be constantly changing. There's glare from windows, too
many items for me to be able to focus (I may compensate with "tunnel vision"
), moving fans on the ceiling, so many bodies in constant motion. All this
affects my vestibular and proprioceptive senses, and now I can't even tell
where my body is in space.
3. Please remember to distinguish between won't (I choose not to) and can
't (I am not able to). Receptive and expressive language and vocabulary
can be major challenges for me. It isn't that I don't listen to instructions
. It's that I can't understand you. When you call to me from across the room
, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*???" Instead, come speak
directly to me in plain words: "Please put your book in your desk, Billy.
It's time to go to lunch." This tells me what you want me to do and what
is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language very
literally. It's very confusing for me when you say, "Hold your horses,
cowboy!" when what you really mean is "Please stop running." Don't tell me
something is a "piece of cake" when there is no dessert in sight and what
you really mean is "this will be easy for you to do." When you say "Jamie
really burned up the track," I see a kid playing with matches. Please just
tell me "Jamie ran very fast."
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and
sarcasm are lost on me.
5. Please be patient with my limited vocabulary. It's hard for me to tell
you what I need when I don't know the words to describe my feelings. I may
be hungry, frustrated, frightened or confused but right now those words are
beyond my ability to express. Be alert for body language, withdrawal,
agitation or other signs that something is wrong.
Or, there's a flip side to this: I may sound like a "little professor" or
movie star, rattling off words or whole scripts well beyond my developmental
age. These are messages I have memorized from the world around me to
compensate for my language deficits because I know I am expected to respond
when spoken to. They may come from books, TV, the speech of other people.
It is called "echolalia." I don't necessarily understand the context or the
terminology I'm using. I just know that it gets me off the hook for coming
up with a reply.
6. Because language is so difficult for me, I am very visually oriented.
Please show me how to do something rather than just telling me. And please
be prepared to show me many times. Lots of consistent repetition helps me
learn.
A visual schedule is extremely helpful as I move through my day. Like your
day-timer, it relieves me of the stress of having to remember what comes
next, makes for smooth transition between activities, helps me manage my
time and meet your expectations.
I won't lose the need for a visual schedule as I get older, but my "level of
representation" may change. Before I can read, I need a visual schedule
with photographs or simple drawings. As I get older, a combination of words
and pictures may work, and later still, just words.
7. Please focus and build on what I can do rather than what I can't do.
Like any other human, I can't learn in an environment where I'm constantly
made to feel that I'm not good enough and that I need "fixing." Trying
anything new when I am almost sure to be met with criticism, however "
constructive," becomes something to be avoided. Look for my strengths and
you will find them. There is more than one "right" way to do most things.
8. Please help me with social interactions. It may look like I don't want
to play with the other kids on the playground, but sometimes it's just that
I simply do not know how to start a conversation or enter a play situation.
If you can encourage other children to invite me to join them at kickball
or shooting baskets, it may be that I'm delighted to be included.
I do best in structured play activities that have a clear beginning and end.
I don't know how to "read" facial expressions, body language or the
emotions of others, so I appreciate ongoing coaching in proper social
responses. For example, if I laugh when Emily falls off the slide, it's not
that I think it's funny. It's that I don't know the proper response. Teach
me to say "Are you OK?"
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups,
tantrums or whatever you want to call them are even more horrid for me than
they are for you. They occur because one or more of my senses has gone into
overload. If you can figure out why my meltdowns occur, they can be
prevented. Keep a log noting times, settings, people, activities. A
pattern may emerge.
Try to remember that all behavior is a form of communication. It tells you,
when my words cannot, how I perceive something that is happening in my
environment.
Parents, keep in mind as well: persistent behavior may have an underlying
medical cause. Food allergies and sensitivities, sleep disorders and
gastrointestinal problems can all have profound effects on behavior.
10. Love me unconditionally. Banish thoughts like, "If he would just??"
and "Why can't she?.." You did not fulfill every last expectation your
parents had for you and you wouldn't like being constantly reminded of it.
I did not choose to have autism. But remember that it is happening to me,
not you. Without your support, my chances of successful, self-reliant
adulthood are slim. With your support and guidance, the possibilities are
broader than you might think. I promise you – I am worth it.
And finally, three words: Patience. Patience. Patience. Work to view my
autism as a different ability rather than a disability. Look past what you
may see as limitations and see the gifts autism has given me. It may be true
that I'm not good at eye contact or conversation, but have you noticed that
I don't lie, cheat at games, tattle on my classmates or pass judgment on
other people? Also true that I probably won't be the next Michael Jordan.
But with my attention to fine detail and capacity for extraordinary focus, I
might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
The answer to Alzheimer's, the enigma of extraterrestrial life -- what
future achievements from today's children with autism, children like me, lie
ahead?
All that I might become won't happen without you as my foundation. Be my
advocate, be my friend, and we'll see just how far I can go. |
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