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\u7de8\u8f2f\uff1a\u8521\u66c9\u5f64<\/p>\n

https:\/\/health2.mingpao.com\/ftp\/Health2\/20170724\/news\/_24yc101.jpg\u58d3\u529b\u7206\u7172\u2014\u2014\u7167\u9867\u6709\u7279\u6b8a\u5b78\u7fd2\u9700\u8981\u7684\u5b69\u5b50\uff0c\u5bb6\u9577\u58d3\u529b\u6c89\u91cd\uff0c\u6975\u9700\u8981\u89aa\u53cb\u548c\u793e\u6703\u5728\u80cc\u5f8c\u4f38\u51fa\u63f4\u624b\u3002\uff08SvetaZi\uff20iStockphoto\uff09;<\/inline><\/p>\n","protected":false},"excerpt":{"rendered":"

【明報專訊】自閉症是長期發展障礙，家人需要長年照顧患者，更要承受社會的歧視目光，構成沉重的壓力及負擔。<\/p>\n

留一段獨處時間，做自己喜歡的事，休息不是偷懶，只是為家庭加油。因為只有這樣，家長才有力氣陪子女走更遠的路。<\/p>\n

■「阿娟﹕<\/p>\n

我帶他走啦，你放心，我會帶着他。分析過後，如果他在生，各方面都是負面的，大家都辛苦，他不在的話，全家都安寧，我無更好的方法。本來想拖多兩年，但我很怕有什麼閃失就後悔莫及，再者，當我和你都離開後，我真的不敢想像阿強要每日對着哥哥的日子是怎樣，我身體日差，很累了。有用的東西捐給有需要的人，如果火化後把骨灰拋下大海，以後不用拜啦。」<\/p>\n

■「強仔﹕<\/p>\n

爸爸真的不捨得你，但是我更不想你在這種情况下成長，爸爸和哥哥去移民啦，你可以過正常的生活，不用記掛着我，聽媽媽的話就是！」<\/p>\n

以上的家書，是由一名父親攜同患自閉症的兒子輕生前，寫給太太和另外一名兒子的遺書所改編。每次讀起來都覺得格外傷感，不期然感受到自閉症患者家庭所承受到的巨大精神壓力。自閉症是一種長期的發展障礙，家人不但需要長年照顧患者，也要承受社會的歧視目光；患者父母更會因為過分集中照顧子女，構成沉重的壓力及負擔。<\/p>\n

九成人遭歧視 壓力指數爆燈<\/p>\n

2012年，協康會與香港中文大學賽馬會公共衛生及基層醫療學院合作，調查本地自閉症兒童家長的壓力。研究於協康會13間特殊幼兒中心進行，對象為2至6歲泛自閉症障礙學童的家長。結果發現，260名受訪者的平均壓力指數及抑鬱指數均遠超於正常水平。<\/p>\n

另外，香港教育大學的心理研究學系及幼兒教育學系，於2015年以問卷形式，訪問了424名由2至18歲的自閉症學童家長，發現逾六成受訪家長需要全職照顧子女，平均每天長達十五小時，九成受訪家長曾遭受不同程度的歧視；七成家長有感別人看不起自己和不願與自己交友，更有兩成人想過輕生。<\/p>\n

日照顧15小時 兩成家長想輕生<\/p>\n

不要以為攜子自殺的父母，一定是兇殘成性，其實有一部分行兇者出於極度愛護家人，害怕自殺後家人沒人照顧，所以先殺害家人後自殺。早前筆者研究了1989至2005年間98宗本地的謀殺後自殺案件，發現本地類似案件與西方社會不同，大部分本地受害者都是行兇者的子女（48.0%）或配偶（46.5%），受害者和行兇者並不認識的只佔大約兩成，以上的遺書就證明了這一點。<\/p>\n

■專家札記<\/p>\n

獨處唞一唞 休息不等於偷懶<\/p>\n

謀殺後自殺其實屬稀有事件，每年的發生率約為0.12\/100000，但要防止這類慘劇，其實並不輕易。筆者對有特殊學習需要兒童的家長亦有一些建議：<\/p>\n

一、定期抽空檢視自己的壓力狀態及精神健康徵狀。能夠好好照顧自己，才能好好照顧孩子。家長應特別留意環境轉變帶來的需要，如﹕孩子將要上學、未來安置規劃等等。面對未知數及改變，往往構成無形的額外壓力及憂慮，牽動家長的身心狀態。<\/p>\n

二、多問多學習。尤其是家庭收入較低，或恐怕被其他人白眼的家長，可善用社會資源與社會網絡，從中獲取社會支持，協助家庭與孩子得到更好及適時的服務。<\/p>\n

三、留些時間做自己喜愛的事情。例如：每天撥一段安靜的時間獨處，做自己喜歡的事。休息並不是偷懶，只是為家庭加油。<\/p>\n

以上三項建議都針對家長自身的需要及健康，因為只有這樣，家長才有力氣陪子女走更遠的路。<\/p>\n

加強託管服務 關注家長身心<\/p>\n

另外，建議社會服務單位在發展幫助有特殊學習需要患者的服務時，同時可考慮提供給照顧者喘息的空間，例如發展託管服務，讓家長有時間處理其他事件，或與親友相聚，甚至讓他們無後顧之憂地參與切合自己的課程和工作坊，達到學習與休息的歷程。<\/p>\n

同時，加強對自閉症兒童的家長身心健康的關注，協助家長面對自己身心健康的變化。從完形心理學（Gestalt Psychology）和家庭為本的角度看，「部分之總和不等於整體，因此整體不能分割；整體是由各部分所決定。反之，各部分也由整體所決定」。由此一觀念推論，家庭中每一名成員的起落都影響了整個家庭，所以患自閉症的雖然是孩子的事情，面對和接受服務的應該是以家庭為單位。<\/p>\n

■爸爸札記<\/p>\n

不只一雙膊頭擔起一個家<\/p>\n

請容許我用爸爸的身分分享一點。在香港，縱然孩子沒有特殊學習需要，做爸爸都並不輕易。現在做爸爸的要理性與感性兼備，一邊養家，愛護太太，另一邊要盡量尋找時間，成為子女的朋友。有時候，難免分身不暇，感到膊頭上的壓力難以再承受下去。如過度受壓，希望你能做兩件事﹕<\/p>\n

一、與太太分享你的感受，如之前所說，家庭中每一名成員的起落都影響了整個家庭。<\/p>\n

二、莫忘初衷，不要忘記我們當初為什麼作了做父親這個決定。世界就算怎樣大，會陪我們走到最後的始終都是那幾個人而已。走筆至此，從頭把文章讀一遍，心仍隱隱的痛。<\/p>\n

文：黃蔚澄（香港大學社會工作及社會行政學系副教授）<\/p>\n

編輯：蔡曉彤<\/p>\n

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