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自闭症

(2008-07-06 21:55:06) 下一个
滴血的心:
我从没想过我在坛子上发的第一篇大作居然是如此的内容。。。半夜醒来,我辗转反侧,心中的痛苦让我难以承受,只能寄托此文聊以抒发。从权威医生的那句“I have no doubt that he has autistic syndrome” 开始,我的世界已经崩溃了。。。

我从没觉得自己是如此不幸的人,也时不时地感叹虽然人生时有坎坷,但总还算通顺。没想到,autism居然发生在我唯一的宝贝身上,让我久久不能释怀。。。

我拿我儿子比较了一些妈妈描述的自闭症宝宝的症状,唯一的感觉就是自闭症的症状真的很难靠简单的几个症状来排除。我列出了些我儿子的症状,比较可能是他自闭症的诊断依据吧。

我儿子从出生到现在快3岁,吃饭一直都很好,发育指标超前,什么都吃,当然现在更爱吃肉。我怀孕期间及生产也是超级顺利,不算大龄妈妈。总之,在看大夫以前,我们唯一的concern就是他的语言问题,本来以为就是简单的speech delay, 却换来了晴天霹雳的诊断。

1。我儿子1岁会叫爸爸,妈妈(但分不清),20个月开始跟大人说简单的字,例如“烫,橘汁”等,而且他也明白他的意思。虽然当时我们担心过,但觉得是双语问题就没有特别在意。后来为了提高他的语言能力,我们还把他留在国内待了半年,主要的业余活动变成了看电视。结果回来后到现在,我们发现他的进步缓慢,至今加起来也就只说20个左右单字,而且最可气的是他不跟你学。想要什么东西在高处,就搬着小椅子争取自己拿,实在不行就拉着大人的手走到目的地。你让他说,他就是不说。大夫说,他的退步就是由于自闭症的发病期是从1岁半开始的,所以他没有了进步。

2。兴趣窄,不会模仿。不知道这是不是由于爸爸妈妈以前太忙,不怎么抽时间陪他玩的缘故。最喜欢拿2个东西打来打去,除此以外就是看电视了,而且就看那几个中文动画片。

3。不social,在国内的时候是看见小朋友多的地方就拉着大人往反方向走。可是现在在daycare,老师说他也跟别人玩。可能再加上我们交友面很窄,除了daycare,他很少有机会跟别的小朋友玩,他也确实不爱跟别人玩。

4。经常对你叫他名字无反应,好多时候也得走到他跟前,才能引起他的注意。但是如果你说一些他喜欢干的事,比如洗澡,他也会立刻跑过来。与家人很close,出门知道瞻前顾后,看看爸妈是否都在,睡觉的时候知道给大人盖被子。玩的时候,也会腻在大人怀里。

5。他与人有eye contact, 而且很爱笑。诊断的时候,大夫拿出个小球,翻过面来,按到桌上,能蹦到天花板上,他笑死了。而且,在家的时候,看着动画片,他也能乐个半天。

听到大夫的诊断,我一直在深深自责,是否是我们以前陪他的时间太少,是否是我们本身比较不social,影响了他的发育。但大夫说No. It is all because his genetics. 天哪,我们夫妻都博士毕业,家里也没这种情况呀。大夫还说,他的genetics会影响到他的下一代。。。

大夫说,我儿子的程度属于mild to moderate,早期intervention治疗,会很有帮助。他要上特殊的preschool, 一般的daycare是不行的。而且,特殊的speech therapy也是必要的。大夫还推荐了个“play and language for autistic youngsters” program, 就是教父母怎么在家教autistism的宝宝。

我本身从不信教,但如今为了儿子,我愿意天天祈祷,如果他能好了,我愿为此改变我的信仰。本来不甘寂寞的我打算重新奔事业的,为了儿子的未来,我愿放弃我的事业。本来我还在考虑老二的可能性,可谁能保证再生出来1个也是autism呢?人的一生真的很艰难,无论如何,我和老公都要放弃我们本身的所有,为儿子的未来撑起一片天!!!

谨在此告慰我滴血的心,同时也渴望同病相怜的爸妈更多交流。。。

我的回答:


我大约在一年前在这里发过帖子,我和有的父母一样急得要命。你可以查一下:
http://web.wenxuecity.com/BBSView.php?SubID=kids&MsgID=899341
我的老婆是美国韩国人,我是中国人,我的女儿3岁便可以用韩文,英文和中文和人交流(次序按熟练程度排),可是我的儿子到了2岁半却什麽都不会。去年的今天我的老婆的心情和你一样,当时他们在韩国过暑假,整天吓自己,去看了那里的心理医生。面试了2天,又是录像什麽的,给个诊断:Pervasive development disorder。账单也不能在美国报。我自己是医生,但不是儿科,看了她的报告,有很多似是而非的东西,我总是不相信这样的诊断,最多是有趋向,不是论断。但是也是担心,万一自己错了怎么办。但是我想关键在于communication。我和他玩,我发现他不是不会和我交流,而是太专心他的玩具,又有strong will, 倔脾气,所以他不对语言交流感兴趣。我也看了好多书。我发现因为现在这个病的知名度很高,但是诊断方法没有变:还是靠观察。到底有多少是真正的自闭症,我不敢说,但是医生的观察往往有限,没有父母强。我不肯定我的儿子有这个病。再说了,就算诊断了autism,治疗方法是什么?speech therapy。我没有感情用事,也自己看了speechtherapy的治疗方案,不外乎是耐心引导开口,吸引注意力。
第一件事是换环境,虽然我老婆在家不工作,也是送他去daycare,和其他小朋友有接触的机会。第二还是和他多玩,在一边不停的说话,也不管他听不听,好像自言自语。不过最多我每天也只有和他有一个小时玩。第三照常过日子。
现在他3岁半了,他的韩国话我是早就听不懂了,有时候要老婆女儿翻译,英文还可以,开始说简单的句子,我没有让他学中文,也是怕给混了,但是现在开始要加强这个方面的教育。他自己的长处:对数字和字母异常感兴趣,会26个英文字母和韩文字母,自己可以念出不知道的单字(phonics),会写一些英文字,会5以内的加法。我们没有刻意去教他,总是发现他无师自通了,然后给他一些challenge。这些他超出同龄很多很多,但是讲话比起来还是慢。我老婆现在又说他是Asperger's。我无语,他就是和别的孩子不一样一些,非得带个病吗?

看了你的描述,我觉得你儿子没有事,关键在以下你自己的观察:
3。可是现在在daycare,老师说他也跟别人玩。
4。经常对你叫他名字无反应,好多时候也得走到他跟前,才能引起他的注意。但是如果你说一些他喜欢干的事,比如洗澡,他也会立刻跑过来。与家人很close,出门知道瞻前顾后,看看爸妈是否都在,睡觉的时候知道给大人盖被子。玩的时候,也会腻在大人怀里。

5。他与人有eye contact, 而且很爱笑。诊断的时候,大夫拿出个小球,翻过面来,按到桌上,能蹦到天花板上,他笑死了。而且,在家的时候,看着动画片,他也能乐个半天。

这些都是似是而非的,肯定不足以诊断autism,或者其他fancy diagnosis Asperger's and Other Pervasive Developmental Disorders. 当然这些都是观察,到底尺度是什麽很难掌握。我不知道你所说的权威医生是谁,但是我是医生我明白,如果病人说有症状,我至少不会排除,先给个working diagnosis,万一有而我说没有,我不是有lawsuit吗?
我给你的建议如下:
1.不要再去找别的医生要2nd opinion.确诊是不可能的。除非很典型,你儿子肯定不典型。
2.耐心观察,多和他一起玩,尽量开阔他的视野,不要因为他不喜欢做carseat,或者在饭店里大叫而放弃出去玩的机会。
3.照顾好自己,不要整天想着这事折磨自己
4.你如果想开始speech therapy,也可以,但是不是光靠它,住要是你们父母的爱和耐心。
过个半年或一年再看看。
我也有一些书和video,现在没有用了,可以转让给你。如需要,留下你的Email,我会和你联系。

I like what you put thing together. I just do not appreciate that you should label every small kid who has probably speech delay into probable autism. Pay attention, probable. You have no idea what that meant for a family. Such a big diagnosis!! Just like that bleeding mother who is going through hell now. I went through the whole process. Do not jump your gun. I know the figure, and I know the fact. All I am saying is to wait and watch. Nothing has to be dramatic, there is no black and white in this disease.

I am not pediatric of any kind. This is what I found. Let us see if her kid fulfill the diagnosis.


The new Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) which defines all known medical disorders for the purposes of diagnosis, describes six characteristics of ASDs. To qualify for a diagnosis, a person must have a total of six or more items from (1), (2), and (3), with at least two from (1) and one each from (2) and (3):

1. Qualitative impairment in social interaction, manifest by at least two of the following:


A. Marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures and gestures, to regulate social interaction

No.他与人有eye contact, 而且很爱笑。诊断的时候,大夫拿出个小球,翻过面来,按到桌上,能蹦到天花板上,他笑死了。而且,在家的时候,看着动画片,他也能乐个半天。

B. Failure to develop peer relationships appropriate to developmental level

可是现在在daycare,老师说他也跟别人玩

C. Lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by lack of showing, bringing, or pointing out objects of interest)

Might be

D. Lack of social or emotional reciprocity

NO.

2. Qualitative impairment in communication, as manifest by at least one of the following:

A. Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

Yes

B. In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

might be
但是如果你说一些他喜欢干的事,比如洗澡,他也会立刻跑过来。

C. Stereotyped and repetitive use of language, or idiosyncratic language

not mentioned

D. Lack of varied, spontaneous make-believe, or social imitative play appropriate to developmental level

not mentioned

3. Restrictive repetitive and stereotypic patterns of behavior, interests, and activities, as manifested by at least one of the following:


A. Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

might be

B. Apparently inflexible adherence to specific nonfunctional routines or rituals

not mentioned

C. Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

might be 最喜欢拿2个东西打来打去

D. Persistent preoccupation with parts of objects.

not mentioned

Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:


1. Social interaction
2. Language as used in social communication
3. Symbolic or imaginative play


So I would say he has some symptoms that suggested autism, but inconclusive for the diagnosis. Or there are somethings she did not share with us.

While making the diagnosis, the mother and father would go through all different questionairs. Then the physician would observe the kid himself. If fulfill above, the diagnosis is reached. If not, then he got Pervasive Developmental Disorder Not Otherwise Specified (or atypical autism). There are many specific types. You can google them.

Name calling is just an experiment, so far not included in the diagnosis.

Now comes the difficult part: can it be cured?
autism, No. But, successful story is one can reach the level of simple communication with daily life through specific education.

PDD: nowadays some people choose the aggressive approach as autism, just like what you just mentioned. This is the grey area I am challenging you: Is it necessary to label these kids as autism?
I do not know if you already let the public know the difference between just simple speech delay or PDD with ture autism.

Failure to talk enough words at certain milestone or failure to respond to his name while he was too preocupied with his toys would send him to the pediatric's office for autism? Give me a break!

I think all of people know how to log into this website are not dumb enough to notice his/her children's behavior problem until too late. They are probably too sensitive. Your warning might cause public panic.

I think the pediatric or pediatric neurologist or pediatric psychiatrist would appreciate the booming business of autistic alike.

我大体的意思也不是要轻视这个疾病,因为大众对它的认知率比往年大大的增加,和对此病的科学研究的深入(细分有好几十个),这个病的患病率在大幅增加。有人怀疑和vaccine中的mercury有关,有个有名的女演员Jenny McCarthy是这个理论的倡导者。我看过她的interview,个人认为她有点hysterical,她的孩子现在好好的,便说是早治疗的结果。我没有让我的儿子接受任何治疗,我去看了speech therapy,确实有可取的地方,但是光光要取得孩子的信任就要很长时间。不能说它没有用,但是最主要工作是在家里父母的耐心和关爱。
我当时顶着很多压力的,来自老婆,自己,自己的爸爸妈妈和岳父母,我坚持观察。这么小,送去效果不一定明显。
大家都知道自闭症是好事,但是不好的是引起的不必要的恐慌。我个人认为在2岁-3.5岁之间的男孩晚说话要引起重视,但是没有必要恐慌,可以等一段时间观察。配合儿科医生的指导。如果情况严重,要去看儿科神经科 (pediatric neurologist),需要验血和脑CT以便排除其他疾病。关于早治疗,至少没有坏处,可以尝试,在各个州小学都有这样的服务,是免费的,有年龄限制,我忘了是几岁,好像是4岁。我当时没有送是因为我觉得我能做的比他们好,至少我不用花那么多时间得到自己儿子的信任。你要说我治疗他,也行,但是我只接受了儿科的课堂训练和3个月的实习,加上恶补,水平实在有限。
最不可取的是像我老婆一样,急病乱投医,那个韩国的pediatric psychitrist也是,把她吓得六神无主。
滴血的母亲,静下来好好分析一下,天没有塌下来。
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