自閉症兒童的成長之路，
要怎麼走？

Jour2106|Team 0|2019/20 Final Project

找答案

社工當時問了一個很好笑的問題，「這麼遲才來見社工？」

我在孩子一年級剛發現有問題的時候就開始排期診斷，排到三年級，三年級暑假那一年才輪到我們...


本來言談溫柔的Vivien (化名)，說到孩子過去的診斷情況時，情緒變得有點激動。Vivien是一位九歲孩子的媽媽，亦是一位自閉症孩子的媽媽。她的小孩於7歲時被確診患有自閉症。從最初發現孩子小學一年級時寫字異常困難，到正式確診患有自閉症，她們一家足足等待兩年。在見學校的心理學家，到見政府心理專家的過程中，她的孩子已從小一念到小三。當時已將近八歲的孩子，早已錯過自閉症兒童四至六歲的黃金時期。


Talking to Vivien about her nine year old son’s diagnosis two years ago, the soft spoken mum can’t help but get emotional. Her child was diagnosed with autism two years after he displayed signs of dyslexia in his first year of primary school. By the time he was able to meet with psychiatrist from the school and then the government, he had already turned eight, missing out on the prime time for treatment from four to six years old.


Vivien一家對抗自閉症的故事剛要開始

「自閉症Autism」

人們過去經常稱呼的「自閉症」（autism），目前已正名為自閉症光譜系障礙(Autism spectrum Disorder, ASD)。患有自閉症光譜系障礙的兒童通常會出現社交能力發展障礙 、溝通能力障礙 ，或者有重複行為、興趣、和活動模式等等，同時在日常行為中伴有感知體驗異常、情緒表現異常等情況。

目前自閉症並不是一個非常罕見的疾病，但是每位自閉症人士都極有可能有差異性極大的症狀與表現。自閉症大部分在出生後二到四年可以被診斷出來，通常會通過一些密集的行無治療例如職能治療、語言治療等途徑來協助自閉症人士康復。

如今香港政府在自閉症的評估，自閉症兒童的教育支援服務方面，福利範疇方面，就業支援服務方面為自閉症患者和家庭提供支援。

自閉都市

Vivien的經歷絕非單一例子，在許多香港家庭裡都可以看到相似的影子。

事實上，香港的自閉症患病率(prevalence rate)在世界排名第八。根據香港政府的人口統計數據，2018年確診為自閉症的人士約有21150位以上，而18歲以下自閉症兒童則有超過10000人。

「你知道嗎？」

2018年確診為自閉症的人數約

21150


香港的自閉症患病率世界排名第

8

政府2019年用於社會福利措施的預計撥款

200億元

「香港現狀」

而近年來，香港的自閉症人士有明顯上升趨勢。
根據政府統計處資料，2018年年底的香港人口的臨時數字約為748萬人，而在2018年確診的自閉症人士應不少於 21,150名，其中全港自閉症患者總數逾10萬人。
根據WorldAtlas統計顯示，在香港每一萬人中有49名自閉症患者，自閉症患病率在全世界排名第八位。
而教育局數據中指出，於主流學校就讀的確診自閉症學生，每年有20%增長。

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重擔難支

照顧自閉症人士的額外開銷往往造成家庭的負擔，在密集治療、特殊教育以及社會適應等方面也需要許多資源的協助。近年來，香港政府嘗試提供資源予自閉症家庭以及特殊教育機構，讓自閉症人士能獲得更合妥善的照顧與教育。然而，在自閉症確診人士逐年增加的情況下，政府與社會所提供的資源真的足夠嗎?

The extra spendings to take care of people with ASD often creates financial burden for families, and intensive therapies, special education and social adjustment all require a large amount of assistance in resources. In recent years, the Hong Kong government has began trying to provide more resources to these families and SEN organizations to provide better care and support to ASD patients. However, with the increasing number of confirmed patients, is the government and society giving enough support and resources to them?


「面對高昂的支出，政府為自閉症兒童提供了什麼支援？」

「分析」

現時香港政府的關愛基金設置了津貼以資助接受學前康復服務的兒童，目前採用輪候方式提供0-6歲的低收入家庭兒童補助。目前政府提供每月$2,615的學習訓練津貼，讓自閉症兒童可以盡早到政府認可之社福機構參與學習活動，這筆津貼亦於2014年納入社福署的恆常資助項目。同時，政府轄下的特殊幼兒中心亦設立多個自閉症兒童教育講座及訓練課程。另外，在學校方面，政府撥出專款用於在公營主流學校推動「融合教育」計劃及支援在主流學校學習的特殊需要的學生。在特殊學校方面，也撥出專款用於特殊需求學生（包括自閉症學童）的教育支援。

The Hong Kong government’s Community Care Fund has set up a subsidy to sponsor children who are receiving pre-school rehabilitation services. It currently has a waiting list for zero to six year old children of low-income families. It provides a monthly training subsidy of $2615 to allow autistic children to participate in learning activities within government verified social welfare institutions. In 2014, it has become one of the Social Welfare Department’s regularly funded projects. Also, special child care centres under the government has also hosted multiple lectures and training programmes on education for autistic children.



「但是...這樣夠嗎？」

申請政府自閉症兒童補貼的手續繁複，Vivien在申請資助時，就因職員也不清楚補貼發放程序，而在銀行等待近一個小時。而各項參加教育講座或訓練課程就更是困難，輪候時間往往都需要一年至兩年，無法為自閉症兒童提供及時的幫助。

However… The process to apply for the subsidy is very complicated. While Vivien was trying to applied, she waited at the bank for over an hour due to the bank teller’s lack of knowledge in the procedure. It has been proven even more difficult to join either lectures or training programmes as they’re waiting lists last for over a year or even two, hence stripping these autistic children’s rights of receiving timely help.




特殊學校的林巧玲老師

在特殊學校有十年服務經驗的林巧婷老師，接觸過不少的SEN學生，身為第一線服務的教師，談起香港社會給予SEN學童的資源相當有感觸。
Miss Lam Hau Ting has taught in a special needs school for over 10 years and met numerous Special Education Needs (SEN) children. As a frontline person in this uphill battle, she has much to say about the resources given to these SEN children.
「社會大眾對於SEN的了解越來越多，政府撥款在增加，但是依舊不夠...」
“Our society is beginning to learn more about SEN and the government is giving us more funding, but that is just not enough,” said Miss Lam.

「自閉症學童現狀」

近年來，據統計，香港自閉症學童逐年增加。香港政府自1997年開始，推行融合教育，讓一些有輕微學習困難的學生，可以選擇入讀主流學校，除了可以讓有特殊教育需要的學生學習如何去融入主流的社會之外，還可讓所有的同學、教師及家長「認識、接受和尊重個別差異，甚至欣賞差異的可貴，從而成為推動個人成長，建構和諧社會的動力」。另一方面，由於自閉症患者身體的客觀原因，他們很難在中學畢業後進入大專院校修讀學位課程進行進一步的學業深造，但近年來，修讀全日制自資學位和學士學位的自閉症學生也在增加。



有教無類

自閉症學童的教育方面，政府採用"雙軌制"推行特殊教育。把自閉症學生分為輕度或嚴重等級，對於自閉症較嚴重或有多重殘疾的學生，教育局會根據專家的評估和建議，在家長的同意下， 轉介他們入讀特殊學校，以便他們接受加強支援服務。而其他沒有需要入讀特殊學校以接受加強支援服務的有特殊教育需要學生，則入讀普通學校，也就是所謂的「融合教育」計畫，讓他們與普通學生互動、從主流教育中獲益，並且安排社工、心理輔導專家駐校為特殊學生服務。


Education for autistic children is separated into two kinds by the government. By separating these students into mild or severe, the Education Bureau would refer them to special needs schools, according to assessments and recommendation, alongside the parents’ agreement, to give them the extra help they need. As for the others, they would go into mainstream schools under the “Integrated education” scheme where they interact and learn alongside regular students. Social workers and therapists would be put into these schools to assist these students.


香港特殊教育的雙軌制已經推行二十多年，然而成效方面在教育界其實不斷地有爭論。在同時採訪過服務於主流學校以及特殊學校的老師後，可以發現老師們的看法也有很大的不同。


This kind of system has been used for over 20 years, and remains controversial in the industry of its effectiveness. Teachers of mainstream schools and special needs schools seem to hold a vastly different opinion when it comes to the process and its results.


「老師有話說...」



特殊學校的林巧玲老師

在主流學校服務超過二十年的盧美玉(Lo Mei Yuk)老師，認為融合教育的推行對於特殊學生其實有幫助，可以訓練SEN學生去融入社會。她提到可能是服務的學校規模小，全校師生人數合計只有百餘人，在學生的品格教育方面相當重視。
Miss Lo Mei Yuk is a teacher with over 20 years of experience in mainstream schools. She believes that the integrated education scheme is actually helpful in training SEN students in integrate into society. She mentioned that due to the small scale of around a hundred people in the school she works in, the students’ character education is highly valued.
主流學校盧美玉老師:「我們都會教小朋友要互相友愛包容，其實在我服務的學校比較沒有特殊生無法適應的問題，小朋友反而會覺得一些比較特殊的學生很特別，反而會更想跟他們親近、一起玩。」
“We teach our children to be friendly and inclusive. The schools I work at usually don’t have problems of SEN students having trouble fitting in. But rather, children often finds the SEN students special and want to be closer with them, play with them,” Miss Lo said.



王蓉蓉老師

王蓉蓉(Wong Yung Yung)老師投入教職九年，同時擁有在主流學校與特殊學校服務的經驗。王蓉蓉老師表示，她個人相對支持送孩子入讀特殊學校，因為孩子在特殊學校可以受到老師全心全意地照顧，師生關係以及老師與家長的關係都比較緊密，同時特殊學校在職能治療、語言治療等課程方面也相對完善。 對於融合教育中特殊學生的適應問題，王蓉蓉老師也認為其實特殊學生會感受到自己與其他同學的差異，而部分主流學校的老師在帶領特殊學生時多少也會感受到困難。
Miss Wong Yung Yung has been teaching for nine years, with experience at both mainstream and special needs schools. She said that she personally supports children to be put into special needs schools, because children there can receive the teachers’ undivided attention, and relationships between teachers and students, even parents are closer. Furthermore, special needs schools are better equipped for occupation and speech therapy as well.As to whether SEN children are able to fit in within the integrated education scheme, Miss Wong feels that these children can feel the difference between themselves and the others regardless, and some mainstream school teachers may find it difficult to lead these SEN children as well.
王蓉蓉老師提到過去在主流學校服務的經歷:「我的同事曾經在一位小二自閉症學生的週記裡，看到小朋友寫說她想自殺，因為她覺得自己跟同學不一樣，沒有辦法跟其他人一起玩，然後課堂上的東西她也不是很明白，覺得特別辛苦。」
“One of my colleague has had one primary two autistic student write in her diary saying that she would want to suicide, because she feels that she is different from the others, and cannot play with the others, nor does she understand the things taught in class, and find all of this very toilsome.” Miss Wong said.



尾聲

自閉症孩子與一般的孩子不同，因此註定他們要踏上一條不同的道路。這條路不能僅僅因為他們特別，就讓他們特別難走。畢竟每一個孩子的笑臉都一樣，不管有沒有自閉症。

Children with Autism is different from normal kids, hence they are destined to walk a different path. This path not only make them special, but also make it more difficult for them. But regardless of Autism, every child’s smile is inherently the same.

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