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要減少誤解   便要從認識開始

To reduce misunderstanding
We have to start with awareness

「我們很晚才發現Jacob有自閉症。」Jacob媽媽憶起兒子大約一歲半時,還未懂得說話,而且情緒起伏很大,十分擔心。Jacob爸爸覺得媽媽過份緊張﹐認為男孩子普遍會晚點才開口說話。媽媽透露她當時複雜的心情:「我曾懷疑Jacob有自閉症,但一直以為自閉症很大機會是源自遺傳,而我和先生的家庭並沒有人患有自閉症,所以我一直不願意相信和面對Jacob或會有自閉症 。」

"We found out very late that Jacob had autism." Jacob's mother recalled that her son, who could not speak and had emotional extremes when he was one-and-a-half years old. The father thought that the mother was overly concerned, as he believed that boys usually started to talk later. The mother revealed her mixed feelings at the time, "I once suspected that Jacob had autism, but I thought that autism had a great chance of being genetic. Neither someone from my husband’s nor my family had autism, so I had always been unwilling to believe that Jacob might have autism."

奈何Jacob到了三歲仍不會說話,而且開始有些行為問題。媽媽看到兒子每況愈下的情形,不能再視而不見,決定帶兒子去接受評估。評估診斷出Jacob確實患有自閉症。媽媽得知此消息時,難過、崩潰和迷惘的情緒一一湧現。「我沒料到Jacob的情況會是這般。我真的很難受,不知如何是好 。腦裡浮現出一堆疑問,Jacob還能上學嗎?他的社交狀況會怎樣呢?他能享受校園生活嗎......」兩夫妻之前對自閉症不甚認識,因此十分擔心兒子的成長。「我們一向覺得自閉症人士會自殘,沒有社交生活,不知道Jacob日後如何獨立生活。」他們於是開始搜尋有關自閉症的資訊和相關治療的服務,發現自己過往對自閉症有相當大的誤解,逐漸地接受Jacob患有自閉症的事實,並積極地為他安排適合的治療。

 

Jacob媽媽很關心兒子的社交發展。由於Jacob未懂說話,他會用尖叫來表達所需,而且只顧活在自己的世界裡,不太理會其他人。當 Jacob接受治療後,情緒管理和行為上都有顯著的進步,媽媽開始願意敞開心扉,與別人分享兒子的情況。「Jacob的改變讓我深切明白到,讓自閉症孩子盡快接受適切的治療尤其重要,這樣他們才能有更大的機會去克服自閉症所帶來的問題。」

When Jacob was three years old, he still could not speak and started to have some behavioural problems. Jacob’s mother noticed the deteriorating condition of her son, decided to stop turning a blind eye and take her son for an accessment. Jacob was eventually diagnosed with autism. When the mother heard the result, sadness, emotional breakdown and confusion emerged one by one. "I didn't expect autism indeed to happen to Jacob. I was really upset and stumped. A bunch of questions came to my mind: Can Jacob go to school? How about his social skills? Can he enjoy school life..." The couple lacked awareness of autism before, so they worried about the growth of their son very much. "In our cognition, people with autism would self-harm and no longer lead to social life. We wondered how Jacob would live independently in the future." Therefore, they began to look for autism-related information and treatment, discovered that they had many misconceptions towards autism in the past, gradually accepting the fact that Jacob had autism, and actively arranging suitable treatment for Jacob.

 

Jacob’s mother was very concerned about Jacob’s social development. Since Jacob did not know how to speak, he would scream to express his desires. He also lived in his own world and did not care about others. After treatment, he has had significant improvement in emotional and behavioural regulations. The mother has been more willing to open up and share her son's situation with others. “Jacob's changes has made me deeply understand that if children diagnosed with autism could get appropriate treatment at the soonest possible, they would have a better chance to overcome the problems caused by autism.”

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當被問及曾否遇過歧視的狀況時,Jacob媽媽表示兒子在大部份外人的眼中是頑皮的,更笑指這已是很溫和的評價了,更難堪的情況也有遇過。「Jacob的自理能力十分弱,未懂得自己上廁所,不理解他的人會評論:『怎麼還未戒尿片?』另外,有次在火車上,Jacob看風景時很興奮地站在座位上大叫,有一位旁人便責備:『他已長這麼大還尖叫,你怎樣當媽媽的?』 亦曾經有家長目睹Jacob的情況便趕緊帶自己的孩子離開,抗拒與我們接觸......我很自責、無助,但也理解旁人的想法,因為就像我過往不認識自閉症一樣,所以我會盡量帶兒子離開現場。」Jacob爸爸則表示不會理會旁人的目光,堅定地說:「Jacob是我的兒子,最重要是他開心快樂地成長。」

When the mother was being asked if she had ever encountered discrimination, she stated that Jacob was very naughty in the eyes of most of the outsiders, and laughed that this was already a very mild comment. She even encountered more embarrassing situations. "Jacob's self-care ability was weak, couldn’t go to the toilet on his own. People who misunderstood him would comment, ‘Why hasn’t he quit diapers?' Besides, once on a train, Jacob stood on a seat excitedly and shouted while looking at the scenery. A passenger scolded, ‘Why does he still scream at this age? How can you allow him to do so?’ And some parents saw Jacob, they would quickly take their children away and resisted getting along with us...I felt guilty and helpless, but I also understood why people view us in this way, just like I didn’t know autism before, so I would take my son away from the scene.” Jacob’s father would ignore the gazes of others, “Jacob is my son, and the most important thing is that he grows up happily,” he said firmly.

在陪伴Jacob成長的漫漫長路上,除了讓Jacob持續接受有效的訓練之外,父母二人還盼望社會大眾可以嘗試認識和接納自閉症。爸爸表示:「自閉症不是傳染病。希望大家能給予耐性,不要戴著有色眼鏡看待,甚至攻擊或標籤自閉症人士。」媽媽期望不同的機構和學校能推動公眾教育,讓更多人了解和支持自閉症人士:「自閉症小朋友是不懂得如何控制自己的行為,他們需要時間去接受專業訓練方能進步。如果大眾多點認識和關懷這群小朋友,家長便能更安心帶孩子探索世界。」

To accompany Jacob in his growing journey, apart from helping him receive effective training continuously, the couple has longed for understanding and acceptance amongst the public. Jacob’s father said, "Autism isn’t an infectious disease. I hope everyone can show patience. Do not look at people with autism with distorted views, nor to attack and label them." And the mother hopes that public education can be promoted at institutions and schools, so that people can lead to a better understanding and show support to people with autism. "Children with autism aren’t able to control their behaviours, they need time to make progress while receiving professional training. If more people understand and care for these children, their parents can bring them to explore the world at ease."

Jacob爸爸及媽媽受訪於愛培自閉症基金,分享他們對自閉症和在本機構接受ABA治療服務的經歷。Jacob曾是愛培自閉症基金的受惠兒童。

Jacob’s father and mother were invited to share their perspectives on ASD and ABA services with Autism Partnership Foundation (operating in Hong Kong) (APF, HK). Jacob is a past beneficiary of APF, HK

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