拒絕擁抱的孩子——自閉兒的圍城世界

:::

1993 / 2月

文‧張瓊方 圖‧張良綱


自閉症?

「自閉症的孩子都很聰明喔!」「自閉症就是孤僻、不理人嘛!」一般人對「自閉症」這個名詞並不陌生,但對自閉症的了解,僅止於字面的意思,及來自電影「雨人」的印象。

這樣的了解與事實有很大的差距。究竟自閉症的真實面貌如何?當「雨人」在真實生活中上演時,會是什麼情況?一般人又該如何與自閉症患者相處?


高媽媽帶小明到醫院打預防針。在醫院堙A小明動來動去,護士小姐試幾次都沒能打進去。小明開始不耐、發脾氣,在醫院婺鶪W跳下、大聲尖叫著跑出醫院。高媽媽驚險萬分地在馬路上抓住他,只好針也不打了,趕緊攔計程車回家。

圍城裡的人

在計程車堣p明又丟煙灰缸、撕雜誌,高媽媽不停跟計程車司機解釋、道歉,換來司機同情的眼光,及「帶兒子去看精神科」的建議。

不得已提前在中正紀念堂下車,小明一股溜跑進去,拔樹葉、吐口水、躺在地上哭鬧,引來一大堆人圍觀,連警察先生都過來問:「需不需要幫忙?」哄騙了半個多小時,小明終於肯跟媽媽回家。

在計程車上平靜了一段時間,不料,在車子遇到紅燈停下來時,又不耐等待,開始吵鬧,高媽媽只得趕快跟司機說明、陪不是。

這個在現實生活中搬演的劇情,與電影「雨人」是不是差距甚遠?故事中的小明就讀小學三年級,是個自閉兒。

自閉症患者的外表既無特徵、也無病容,與正常人無異。但他的世界卻有如一座圍城,自己出不來,外人也進不去。有人說,他們像天上的星星,讓人覺得遙遠、迷惘。台大醫院兒童心理科醫師宋維村則形容:「自閉症患者的腦像電腦,必須找到開啟它的鍵語,才能輸入……」

我的孩子有問題?

雖然自閉症的病因至今仍是個謎,但已確知無法由後天的社會或心理環境造成自閉症,絕大多數都是「與生俱來」的。由於外表看來健康正常,在襁褓期不容易察覺,多半要到孩子一、二歲,甚至二、三歲時,家長才會感覺孩子不太對勁。

家住高雄的張美英連生兩個女兒之後,生下小兒子昊群。昊群從小白白胖胖,很安靜、很好帶。直到一歲多,兒子不講話、叫他也沒反應,卻喜歡整天踮腳尖、轉圓圈。張美英覺得有點奇怪,帶兒子去看小兒科、耳鼻喉科,醫生告訴她:「孩子沒問題,不必太多心!」

兩歲多昊群開始尖叫、咬自己、撞牆,整天按錄音機,開關衣櫃、紗門,一天不下一、二千次。「我愈來愈覺得有問題,但婆婆老罵我大驚小怪」,張美英說。

等到把孩子送進托兒中心,老師也覺得有問題,建議她帶兒子去台大醫院看兒童心理。經初診、復診,證實昊群是個自閉兒,這時昊群已經快三歲了。

另一位胡媽媽也在兒子兩歲多時,發覺孩子不跟人家玩,喜歡看電風扇、抽油煙機等會轉動的輪子,一看老半天。會說話、但停留在單字階段。醫生檢查說是「智能不足」,直到六歲才確定是自閉症。

跟孩子一起撞牆

當家長們得知孩子是原因不明的自閉兒時,總覺得莫名其妙,「怎麼會這樣?」多數家長不相信。台北市自閉症教育協進會理事李維娟表示,有位會員的丈夫,至今仍不承認自己的兒子患有自閉症,不僅阻止太太入會,還打電話給她,要求兒子說話,證明兒子沒有自閉症。因為他認為自閉症就是不肯說話的孩子。

即使接受事實的家長,也多滿懷希望地相信孩子只是一時失調,很快會好起來。做生意的許媽媽就毫不諱言地說:「當時我很樂觀,覺得兒子一定會好,說不定還有可能是個天才呢!直到他十三歲發生癲癇,我才覺悟,我的兒子是真的有病。」

的確,家長們了解愈多,愈覺得恐懼;孩子愈大,也愈感到壓力和無助。一位媽媽在兒子撞牆時,傷心地跟著一起撞;另一位媽媽在叫天天不應、叫地地不靈時,從公寓三樓一躍而下;還有一位無所遁逃的父親則丟下妻、子,跳河自殺。

自閉症不是絕症,但家有自閉兒的家長卻是孤立無助的,對他們而言,未來是一條艱辛、漫長,不能有絲毫鬆懈的路。

台大醫院兒童心理衛生中心日間留院部,是唯一一個學前自閉兒療育機構。雖然學費由社會局補助,但名額有限,患者必須排隊等候機會。

病況個個不同

目前日間留院部有廿幾位病童在接受療育,每個孩子都必須由家長陪同,工作人員詹和悅表示,家長在這媥Й|教孩子的技巧,回到家奡N可以自己教。

透過團體活動,各類玩具、遊戲,教導孩子與人互動、遵守秩序……。「一百個自閉兒一百個樣子,每個孩子的學習能力和個性都不相同,有的幾個月就會;有的一、二年還學不會」,詹和悅說,情況好的,就讓家長帶回去自己教。

自己教育自閉兒的艱難與辛苦,不是外人可以體會的。于媽媽利用吹蠟燭、吹泡泡、吸養樂多來教兒子發音,教了三年兒子才會發「ㄅㄚㄅㄚ」、「ㄇㄚㄇㄚ」等單音;花八個月的時間教會兒子坐馬桶;扣扣子則整整教了四年。許媽媽教兒子綁鞋帶,從早上六點教到晚上十一點。

然而,自閉兒的一點點小進步,都會讓父母欣喜若狂。孫媽媽每天在兒子耳邊自問自答,當有一天孫媽媽問:「小朋友,你叫什麼名字?」兒子第一次隨口答出自己名字時,她高興得眼淚奪眶而出。

即便家長這麼努力的在教自己的孩子,但自閉兒在一般人眼堙A卻常是個「沒有教養的孩子」。

再也不帶他出門

蔡媽媽帶兒子上陽明山,兒子跑來跑去,她怕萬一跑丟了,緊跟在後。一旁老先生問:「你為什麼不打他呢?這麼皮!妳不累,我在旁邊看了都累!」蔡媽媽跟老先生解釋:「這孩子有病才會這樣!」老先生卻說:「健健康康有什麼病?就是有你們大人這麼縱容,才會教出這種小孩啦!」

高媽媽每次帶兒子出門,身上總要帶很多錢準備賠人家。在餐廳吃飯,兒子情緒一來把人家的桌子掀了;到市場買菜,他捏碎人家的豆腐、砸爛人家的西瓜……,「弄壞東西可以賠錢了事,但人家以目光或口頭詢問:怎麼會有這種小孩時,我卻不知從何說起」,高媽媽無奈的說。

張美英也指出,每次帶昊群出去,他總要出狀況。在店堶捷]來跑去,拿這個、碰那個,惹老闆生氣;到市場什麼東西都要拿來聞一聞,結果只好他拿什麼就趕快買。「每一次我都會在心裡暗暗發誓:再也不帶他出來了」,張美英說。

破財能消災?

這些失常行為頂多讓家長們「破財消災」,或被冠上「疏於管教」的罪名。而真正讓自閉兒家長戒慎恐懼的是——情緒困擾和青春期可能發生的癲癇症。

自閉症的孩子不太能忍受挫折,凡是固定行為被打斷、意思無法被了解等挫折,都會引起自閉症患者的情緒反應。詹和悅舉例,一個自閉兒不斷的復誦「我長大要自己去逛街」,其實他是擔心、害怕長大後要一個人逛街。如果身旁的人回答:「對,你長大後可以自己去逛街!」就會引起他的焦慮、生氣。如果回答是:「長大後我陪你一起逛街」,就可以緩和他的情緒了。

自閉兒的情緒困擾因人而異。嚴重的會自傷,咬自己、撞頭、哭鬧。高太太形容兒子發起脾氣來,會完全失控。「人間地獄在那堙H在我家堙C午夜夢迴想到兒子,我就睡不著覺」,高太太說,雖然兒子情緒困擾嚴重,但他也努力在克制,漸漸已有些改善。

至於併發症——癲癇,那就得碰運氣了。宋維村表示,約五分之一到三分之一的自閉症會併發癲癇,大部分在青春期發生。于小弟則自幼即發生,從一星期一、二次,吃藥控制到半個月一次。「每到該發病的時問我就坐立難安,深怕他在上下樓梯、馬路上突然發作倒下」,于媽媽說。

學校教育分擔重任

一般自閉兒的家長熬到孩子小學入學,才好不容易有學校老師可以分擔教育重擔。

由於醫生建議學前經過矯治、情況較穩定的自閉兒,最好進普通班就讀,有助於自閉兒學習正常的語言溝通和人際關係。於是部分孩子進入普通班就讀,但是福是禍,全憑老師是否能接納。

孫銘在小學三、四年級時,天天回家發脾氣,吵著要搬去「不用上學的非洲」。直到五年級換了老師,情況好轉,媽媽才知道,原來三、四年級的老師天天打他、捏他,還警告他「回家不許告訴媽媽」。

坤彥則有幸遇到好老師,即使他在教學觀摩那天,當眾演出了一場「鬧學記」,第二天有位家長竟然不願讓自己的孩子跟自閉兒同班,要求轉班,這位老師依然沒有放棄坤彥。

在正常班的自閉兒,一、二年級靠記憶,認字能力通常不錯,成績還不算太差。到三、四年級思考性的應用問題出現,則開始明顯落後。雖然放學後家長仍努力的補救,但數理方面通常不如人意。到了國中繼續留在普通班的不多,大多改念啟智班或進啟智學校。

今年國三的孫銘是少數智商、行為能力較高的自閉症患者,他不僅在正常班成績維持中等,而且還準備參加明年的高中聯招。孫媽媽始終不肯為兒子申請殘障手冊,並告訴孫銘:「你的自閉症已經好了,我們把機會留給別人。」

畢業之後,何去何從?

自閉症會好嗎?即使像孫銘這樣「高功能」的自閉症兒,仍有許多強迫行為,如每天回家都要重演一次學校的情形。他也有表達上的障礙,如關心在美國的阿媽,孫銘會說:「阿媽不知道會不會被車壓死?」爸爸要出國洽公,孫銘問:「爸爸,飛機會不會掉下來?」

台灣唯一一位大學畢業、目前在美國學電腦的自閉症病患,在人際溝通上也有調適的問題。有一次他寫信告訴所有住台北的同學,他要搭幾點幾分的火車到台北車站,以為同學們都會來接他。下了火車卻不見半個同學,大失所望。

但能像他們這樣過正常生活,已是少數中的少數。多數自閉兒在啟智學校畢業後,就不知何去何從了。父母肩頭的重擔、心頭的壓力,至此仍未能稍減。只要稍一放鬆,孩子就可能出現退化現象。

就讀啟智學校高一的許文龍,近來的退化現象就叫許媽媽憂心忡忡。由於併發癲癇,許媽媽對文龍較放鬆,不忍再要求太多,不料近來文龍的異常行為愈來愈多,喜歡用手去碰小女生;看到人家身上有頭髮,非動手幫人拿掉不可;喜歡看學生制服上的學號,有時會拿手去碰人家。這些舉動常會嚇到別人。

被遺忘的一群

家有自閉兒的父母真是片刻不得休息,甚至連找個暫時「托兒」的地方都不可能。張美英說:「親戚朋友都覺得我兒子『好可怕』,因為他們不了解他,沒有人敢幫我帶兒子。」

這樣全心投入的帶自閉兒,還會惹來其他子女的抱怨。「媽媽,弟弟為什麼不早點死掉!」「媽媽,我是不是你親生的,為什麼你只疼弟弟?」當母親聽到這樣的童言稚語,仍不免感到歉疚與辛酸。

「日後有什麼打算?」這是親朋好友最常詢問的;「你好辛苦喔!」這是親友經常掛在嘴上的安慰。前者無解;後者無濟於事。

「老天爺把這樣的孩子交給我,表示我能力很強」,一位媽媽這樣安慰自己。長久以來,自閉兒的家長們就像被遺忘的一群,孤獨的在黑暗中摸索,對付這個病因未明,療育方式仍在實驗的疾病。

也許你要問,社會大眾可以怎麼協助自閉兒及其家庭呢?詹和悅說:給他們機會、給他們空間。一切要從尊重和了解開始。

〔圖片說明〕

P.98

自閉症患者總是沈浸在自己的世界中,即使在人群中,也有如天邊孤星,教人感覺遙遠又迷惘。

P.98

八歲的韋韋有很好的記憶力,教過的字過目不忘。他喜歡讀字,看到有字的書就想把它「帶回家」。

P.99

不聽話被罰站,他依然自己跟自己玩,樂在其中,一點也不覺得委屈、寂寞。

P.100

對一切未知的事物,自閉兒會莫名的恐懼。在一次野外烤肉活動中,家長們讓孩子嘗試一些野外遊戲,孩子恐懼,家長也緊張。

P.100

慈父心、豆腐心,自閉兒挑食的厲害,為了讓兒子喝碗湯,爸爸顧不得燙嘴,一口吞下兒子不要的豆腐。

P.101

上課老半天了,偉明尚未進入情況,連課本都不知道拿出來,一旁的同學幫著在他書包娷膚銦C

P.102

為了防止文龍忘了吃菜,導致癲癇發作,許媽媽把每天的藥量貼在月曆上,時時提醒自己監督孩子吃菜。

P.102

十六歲的文龍下了課就幫忙做家事。炸排骨時,他專心忙著挑出自己愛吃的油酥邊。

P.103

自閉症患者很難找到適當的工作,像圖中的柏彥能在自家工廠中從事縫衣工作,是少數幸運的例子。

相關文章

近期文章

EN

Children That Refuse to Be Hugged

Chang Chung-fang /photos courtesy of Vincent Chang /tr. by Peter Eberly

Autism?

"Autistic children are very intelligent!" "Autistic people are aloof and eccentric!" Most people aren't unfamiliar with the term, but their understanding of it is limited to a superficial impression acquired from the film Rain Man.

That sort of understanding is a far cry from reality. Just what is autism really like? How does Rain Man play out in real life? And how should ordinary people get along with the autistic?


Mrs. Kao took her son Hsiao-ming to the hospital for a shot. He fidgeted around, and the nurse tried several times to put in the needle without success. He started to get impatient and lost his temper, jumping up and down, shouting and screaming and then running right out the door. Terrified, Mrs. Kao grabbed him on the street. She gave up on the injection and caught a taxi to take him home.

Cities under siege:

In the taxi, Hsiao-ming flung an ashtray and ripped up a magazine. Mrs. Kao kept apologizing to the driver and trying to explain. In return, she received a look of sympathy and the suggestion that she "take the kid to see a psychologist."

She had no choice but to get out of the cab early, at Chiang Kai-Shek Memorial Park. Hsiao-ming ran in, spat, tore up some leaves and lay on the ground howling, drawing a crowd of onlookers. Even a policeman came over and asked if she needed help. After being coaxed for half an hour, Hsiao-ming finally consented to go home with his mother.

He was quiet for a while in the cab. Suddenly, when they stopped at a red light, he became impatient and started to make a racket. Mrs. Kao quickly apologized to the driver and tried to explain.

Isn't this story from real life a far cry from Rain Man? Hsiao-ming is an autistic child in third grade.

Autistic people look no different from normal people. But the world of their psyche is like a city under siege, where those outside can't go in and those inside can't get out. Someone once likened them to stars in the the sky, remote and distant. Sung Wei-tsun, a child psychologist at National Taiwan University Hospital, makes another analogy: "The brain of the autistic is like a computer, where you have to find the right key code to give it input. . . ."

Does my child have a problem?

Although the cause of autism remains a mystery, it has been determined that it is not caused by the social or psychological environment and the vast majority of cases are congenital. Since the afflicted are healthy and normal in appearance, autism is difficult to detect in early infancy. Most parents of autistic children don't realize there is anything wrong until their children are one or two years old or even two or three.

Chang Mei-ying, of Kaohsiung, had two girls before giving birth to a boy, named Hao-chun. He was cute and plump, quiet and easy to care for. In his second year he still couldn't talk or react to his own name, and he liked to stand on his tiptoes and turn in circles. Chang Mei-ying felt this was a little strange and took him to see a pediatrician and an ear, nose and throat specialist, but the doctors told her not to worry; nothing was wrong with him.

As a two year old, Hao-chun began to scream, bite himself and bang his head against the wall. He would play the tape recorder all day long and open and close the closet or the screen door hundreds of times a day. "I sensed more and more that there was a problem, but my mother-in-law said I was just a worrywart."

When he was sent to nursery school, the teacher also felt something was wrong and suggested she take him to National Taiwan University Hospital to see a child psychologist. Subsequent examinations confirmed that he was autistic. By then he was nearly three years old.

A certain Mrs. Hu discovered when her son was two that he wouldn't play with other children and liked to watch rotating things like the blades of the fan all day long. He could talk but was stuck at the level of one syllable words. The doctor examined him and said he was "retarded." It wasn't until he was six that she confirmed he was autistic.

Banging her head along with him:

When parents find out that their children are autistic, they always wonder, "Why us?" Many refuse to believe it. Li Wei-chuan, president of the Taipei Educational Association of Autism, relates that the husband of one member still won't admit that his son is autistic. He tried to stop his wife from joining the foundation, and he even called her up and put the child on the phone to prove he could speak because in his mind autistic children won't speak.

Even parents who accept the fact that there's a problem usually nurture the hope that their child is just temporarily maladjusted and will soon recover. A Mrs. Hsu, who runs her own business, freely admits, "I was very optimistic. I was sure my child would get better--maybe he was a genius! It wasn't until he was 13 and had epilepsy that I realized my son really was sick."

Indeed, the more parents understand about the affliction, the more fearful they are, and the older the child, the more stress and helplessness they feel. One mother was so distressed when her son banged his head against the wall that she banged hers right along with him. Another was so desperate she jumped from her third-story apartment. And a father who didn't know where to turn left wife and child and committed suicide. Autism is not a fatal disease, but the parents of an autistic child feel isolated and helpless. For them, the future is a long, hard road ahead.

The only treatment center in the country for preschool autistic children at present is the Child Psychology Health Center at National Taiwan University Hospital. Part of the tuition is paid by the government, but openings are limited and there's a long waiting list.

Each case different:

The center has over 20 children in therapy at present. Each child must be accompanied by a parent. Health worker Chan Ho-yueh says, "Parents learn the knack of teaching their children here so they can do it themselves when they go home."

Using group activities and various toys and games, the children are taught to interact with others and stay in order. "A hundred autistic children come in a hundred different kinds. Each of them differs in personality and learning ability. Some learn in a few months, while others can't get anywhere even after a year or two," Chan says. In better cases, the parents are asked to take them home and teach them themselves.

The difficulties and hardships of teaching an autistic child are beyond the grasp of someone who hasn't been through it. A Mrs. Yu used blowing out a candle, blowing bubbles and sipping a drink to teach her son pronunciation, but it still took three years before he could say such simple words as Mama and Papa. It took eight months of teaching before he could go to the toilet, and buttoning a shirt took a full four years. When Mrs. Hsu tried to teach her son to tie his shoelaces, she worked at it from six in the morning to 11 at night.

Given that effort, just a little progress makes parents wild with joy. Mrs. Sun would ask her son questions and answer them all day long. When she asked him, "What's your name?" one day and he answered correctly, she was so happy her eyes filled with tears.

Even though parents work so hard at teaching them, in many people's eyes autistic children are "just plain spoiled."

Swearing not to take him out again:

When a Mrs. Tsai took her son to Yangmingshan, he ran all over the place and she followed closely behind, afraid that he might get lost. An old man said to her, "Why don't you just spank him? He's so naughty! Even if you're not tired, I am just watching him!" Mrs. Tsai explained to the old man that he was like that because he suffered from an illness. "What illness?" the old man replied. "Why he's as healthy as can be. It's just that you parents have been so lenient you've brought him up like that!"

Every time Mrs. Kao takes her son out of the house, she always brings along a lot of money to pay in compensation. In a restaurant, her son may turn over someone's table if the mood strikes him. In the vegetable market he pinches the tofu or smashes a watermelon. . . . "If he breaks something, I can pay for it. But when people look at me or ask me in so many words how he can be that way, I don't know where to start," she says helplessly.

Chang Mei-ying says that Hao-chun acts up every time she takes him out. If they're in a store, he runs around and snatches this or wrecks that, upsetting the owner. If they're in the market, he has to pick up everything and smell it, and she winds up hurriedly buying whatever he touches. "Each time I swear to myself not to take him out again."

Complications:

That sort of behavior, at most, costs parents money or causes them to be accused of lax discipline. But what really frightens the parents of autistic children are severe reactions to emotional distress and epilepsy, which may occur with the onset of puberty.

Autistic children handle frustration poorly. Whenever they encounter a setback, such as interruption of a fixed behavior pattern or being misunderstood, an emotional reaction may be triggered. Chan Ho-yueh cites an example. An autistic child who constantly repeats, "When I grow up I want to go shopping on my own," may actually be worried that when he grows up he will in fact have to. If people answer, "That's right. You can go shopping on your own when you grow up!" he'll become distressed and angry, whereas an answer like, "I'll go shopping with you when you grow up," will assuage his anxiety.

Each child reacts differently. In severe cases, they may cry, make a racket or hurt themselves by biting an arm or banging their head against something. Mrs. Kao says that when her son loses his temper he goes completely out of control. "Hell on earth? It's right here in our home. If I dream of my son in the middle of the night, I wake up and can't get back to sleep." Even though her son suffers severe lapses, she says that he tries hard to control himself and has gradually been making improvement.

As for the second complication--epilepsy--that depends entirely on luck. Epilepsy strikes about one fifth to one third of the autistic, Sung Wei-tsun says, usually during puberty. A younger son in the Yu family had it even as a child. Attacks came once or twice a week, although now that he takes medication to control it they occur only once every two weeks. "Whenever an attack is due, I'm on tenterhooks." Mrs. Yu says. "I'm afraid it'll strike when he's out on the street or going up or down stairs."

Sharing the burden:

Having put up with so much, most parents are relieved when their child is old enough to enter grade school, and the teacher can help share the educational burden.

Doctors recommend that autistic children who have been treated as preschoolers and are comparatively stable should be enrolled in a regular class to help them learn about normal language communication and personal relationships. Entering a regular class can be a mixed blessing, however; it all depends on the teacher.

When he was in third and fourth grade, Sun Ming would come from school every day in a temper, fussing that they should move to Africa, "where you don't have to go to school." It wasn't until he was in fifth grade and got a new teacher that the situation improved and his mother found out that his previous teacher used to spank him and pinch him and warn him not to tell her mother when he got home.

Kun-yen was lucky enough to find a good teacher. She stood by him even though he threw a tantrum on parent-teacher day and one of the families demanded the next day that their child be transferred to a different class.

Since they can rely on memory, autistic children are usually pretty good at learning to read and don't do too badly in a normal class during the first couple of years. But by third and fourth grade, when applied thinking problems come up, they clearly begin to fall back. Even though their parents may work with them at home, they often can't keep up in math and science. By middle school, few of them remain in regular classes. Most change to remedial groups or special education schools.

Sun Ming, who is a third-year middle schooler this year, is one of the few "high-functional" autistic children. He not only manages to maintain mid-level grades in regular classes; he's getting ready to take the high school admission examination next summer. Mrs. Sun refuses to apply for a disabled card for him. "Your autism is all better now," she tells him. "We'll leave the slot for someone else."

Can it get better?

Even "high-functional" autistic children like Sun Ming persist in certain forms of compulsive behavior, such as insisting on reenacting what went on in school every day after coming home. He also has a problem in expressing himself. When he's concerned about his grandmother in the United States, for instance, he may say, "I wonder if she's going to get run over by a car?" Or if his father is getting ready to go on a business trip, he may ask, "Will the plane crash?"

The only sufferer from autism to graduate from a university in Taiwan, who is now studying computer science in the United States, still has a problem in communication and emotional adjustment. He once wrote a letter telling his classmates in Taiwan that he would be arriving at the Taipei train station at such-and-such a time, expecting they all would come to meet him. When he got off the train and not one was in sight, he was greatly upset.

But autistic people who are able, like them, to live normal lives are few and far between. After graduating from a special education school, most have no idea where to go. The burden and stress their parents feel doesn't let up. Relax a bit, and their child will start to regress.

Hsu Wen-lung, who is a first-year student at a special education high school, has regressed recently, making his mother very worried. Because of his epilepsy, Mrs. Hsu had been rather lenient on him and wouldn't demand too much. Unfortunately, his abnormal forms of behavior have been increasing lately--touching little girls, pulling the hair on people's bodies, staring at the numbers on his classmates' school uniforms, reaching out and touching people . . . actions that frighten others.

Forgotten group:

Parents with an autistic child have not a moment's rest. Even finding a sitter can be impossible. "Friends and relatives all think our child is 'awful,'" Chang Mei-ying says. "They don't understand him and they're afraid to help look after him."

Their total commitment to caring for the child may lead to complaints from their other children. "Mommy, why doesn't Little Brother hurry up and die?" "Am I your real daughter, Mommy? Why is it you only love my brother?" When a mother hears her children talking like that, she can't help feeling miserable and bitter.

"What do you plan to do in the future?" is a question that friends and relatives commonly ask. "It's really tough!" is the consolation frequently on their lips. The first comment is no solution; the second is no help.

"God sent me a child like this to show that I'm strong," is how one mother consoles herself. For a long time now, the parents of autistic children have been a forgotten group, groping alone in the dark, trying to deal as best they can with an affliction whose causes are not known and whose treatment is still in the experimental stage.

What can the public do to help autistic children and their families, you may ask. Give them a chance and give them space, Chan Ho-yueh says. It all begins with respect and understanding.

[Picture Caption]

p.98

Autistic children are shut off in their own parivate worlds. Even in a crowd they seem as distant and isolated as a star in the sky.

p.98

Eight-year-old Wei-wei has a photographic memory for Chinese characters. He likes to read and wants to take home every book he sees.

p.99

Ordered to stand on a chair for misbehaving, he doesn't seem to mind the punishment a bit and goes right on playing by himself.

p.100

Autistic children are often terrified of the unknown or unfamiliar. The parents have them try some outdoor activities at a barbecue picnic. The children are scared and the parents are nervous.

p.100

"A loving father's heart is as tender as tofu," the Chinese saying goes. Autistic children are picky about food. A father eats a piece of tofu, which his son doesn't like, to get him to finish to his soup.

p.101

Halfway through class and Wei-ming still hasn't even taken out his textbook. A classmate helps him rummage through his book bag.

p.102

So that Wen-lung won't forget to take his anti-epilepsy medication, Mrs. Hsu tapes each day's dosage on the calendar as a constant reminder.

p.102

Wen-lung, 16, helps with the housework each day after school. When frying meat, he likes to scrape off the crispy edges for himself.

p.103

It's difficult for the autistic to find suitable jobs. Po-yen, who works as a garment worker in his family's factory, is one of the lucky ones.

X 使用【台灣光華雜誌】APP!
更快速更方便!