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“自閉症兒童的成長之路,

要怎麼走?”


Vivien

社工當時問了一個很好笑的問題,
「怎麼這麼遲才來見社工?」
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.



但Vivien一家面對自閉症的故事,才剛要開始...

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。


What most people call “autism”, is now officially named the Autism Spectrum Disorder (ASD). Children with ASD usually display challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as abnormality in perceptual experience and emotional expression, etc.
Autism is not a rare disease, though each person with ASD may vary largely in symptoms and behavior. Diagnosis can be made at two to four years old usually, and treated through intensive behavioral treatments such as occupation therapy and speech therapy.

自閉都市

「香港現狀」

據教育局數字,患上自閉症的小學生人數,由2014/15學年的3801人,增加約五成,至2018/19學年的5693人;至於中學生,被確診自閉症的學生人數由2014/15學年的1985人,增至2018/19學年的3844人,增幅約94%,患自閉症的中小學學生合共達9,537人

According to the Education Bureau, there are currently a total of 9537 autistic students in Hong Kong. Primary students with ASD has risen over 50% from 3801 in the 2014/15 school year, to 5693 in the 2018/19 school year. As for secondary students, the numbers rose by 94% from 1985 to 3844 in the same time period.

「日益增長...」

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年全港自閉症人士約有21150位以上,而18歲以下自閉症兒童則有超過10000人。

Vivien’s experience is not at all a singled out case, but a common occurrence for many Hong Kong families.
Eighth in the world of the ASD prevalence rate, there are up to 21150 autists in Hong Kong and over 10000 of them are under 18.



特殊學校老師林巧婷


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。
「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...」

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.
“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.


8
香港 自閉症患病率 在世界排行
21150
2018全港自閉症人數約
8000
治療每月 開銷至少
200
2019財政預算於社會福利措施(/億)

重擔難支


「開銷和支援」


「直觀體驗」

"自閉症孩子每月花銷多少? "

--->>>自閉症孩子每月花銷多少?"

「政府津貼」


「但是...」

有教無類?


「現狀」



「爭議」

「老師說...」



盧美玉老師


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.


「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(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。
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.

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。
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:未來」

「Contact Us」

Angie Chan
FangYi CHEN
Cheung Yan Yi
ZHAO Minzhu

「Thanks」

明愛賽馬會黃大仙青少年綜合服務-幸福童學會
親切TREATS & Mable
林巧玲老師 王蓉蓉老師 盧美玉老師
Vivien(化名)
Hu Pili
Lewei & Ivy & Tianzheng

Thanks all who have helped us for the final project