積極面對自閉症   相信終會見到曙光

善加在兩歲多時確診自閉症。在為善加尋找合適服務的路上,善加爸爸形容就像是在茫茫大海中飄浮,「我們不停地尋找救生圈,但之前遇上的救生圈很快便漏氣,無奈地要不斷尋找下一個未知成效的救生圈!」可喜的是他雖然在困境中,仍然積極樂觀面對,更希望給同路人力量,爭取大眾關注自閉症這議題及政府增撥資源。

自閉症服務資源不足

從善加確診起,爸爸便全職照顧兒子。由於醫生只建議爸爸自行到不同的機構申請服務,他於是四處奔波為兒子尋找治療服務。爸爸曾與社工會面,只是獲安排輪候特殊幼兒中心(「S位」);現時四歲的善加,政府所提供的服務只限於一個月四堂的到校跟進服務,更不遑論很多基層家長眼中彷彿既是唯一但又遙不可及的救生圈(「S位」)。善加爸爸慨嘆:「政府資源分配很差,一切都要靠自己爭取。訓練的名額太少,收費又貴,輪候時間也很長。」在訪問當日,善加爸爸剛好收到醫院的電話,他不禁感嘆了一句:「等了一年多才通知約見醫生,資源絕對不足夠。」

 

家長無奈變身治療師  已成常態

善加之前在APF的家長資源中心接受了一個月一對一密集式應用行為分析(ABA)治療,爸爸觀察到善加的領悟力、吸收能力和表達能力都有所增強;然而,在資源不足的情況下,他還是需要繼續尋找救生圈。他更擔任了兒子的治療師,每天與善加進行45鐘的家居訓練。「我是無牌的(沒有接受正式的訓練),效果有時會弄巧反拙。很多家長都需要輔導和多方面的指導,最理想當然是有機構的專業治療服務。」

 

在幼兒階段打好基礎  加強公眾教育  消除歧視

自閉症孩子和其他孩子一樣,在不同的成長階段都會面對各種問題,孩子總有反叛期,自閉症人士也是一樣。善加爸爸說:「例如自閉症人士的工作或就業問題,實在很需要持續的支援;可是政府只有短期計劃,沒有長遠配套。坊間的服務不足,如ABA的合適及有效治療更缺乏。我們應該在幼兒階段就幫助孩子打好基礎,而不是待他們長大後才嘗試解決,屆時好可能為時已晚。」

 

自閉症的影響很長遠,又由於自閉症孩子的外表與其他小朋友沒甚麼差異,因而未必可以輕易地凸顯問題的嚴重性,善加爸爸希望政府會設立專門機構幫助自閉症人士及其家庭,讓家長有途徑尋求協助,不用那麼徬徨和擔心。他同時覺得大眾通常沒有主動去認識自閉症,對自閉症人士有許多誤解和負面標籤,部份人更可能會將個別自閉症人士的獨特行為延申至所有自閉症患者的問題。他希望政府及服務機構可以加強相關的公眾教育,講解自閉症人士的問題及其家庭或會遇上的困難,繼而令大眾接受自閉症人士。

主動帶孩子走進社區  凡事樂觀就會有轉機

面對旁人的歧視眼光,善加爸爸選擇了積極地面對問題。他不介意向別人透露善加的情況,「如果我怕被別人知道,我不就是第一個歧視自己兒子的人嗎?這樣其他人也會跟著歧視他。」他曾經在公園遇到有嚴重行為問題的自閉症孩子,其他家長馬上拉走自己的孩子;正當那位家長感到很尷尬的時候,我上前鼓勵對方不要害怕,邀請他們一起玩。樂觀的爸爸深信自閉症孩子要多與別人互動和走入社區才會有進步,因此他經常鼓勵其他家長多帶孩子出門。

 

善加爸爸相信只要家長抱著正面的態度, 加上安排子女接受有效的專業治療,就能夠幫助孩子健康快樂地成長。「身為父母不免會為孩子的情況傷心和擔憂, 然而,我們更要抱著希望和樂觀態度,積極地幫助子女,例如放大孩子微小的成功和縮小他們的弱點,相信終可以找到一大片新大陸及放棄洩氣的救生圈,與家人一起迎接一道又一道美麗的曙光。」

相關報道 Related News (Chinese Only)

[1] https://bit.ly/3x29oYT (Topick: 【關注自閉】兒2歲確診自閉症媽媽心痛難受 港爸轉售公司全職湊仔︰把握黃金治療期)

[2] https://bit.ly/2Qrtkna (HK01: 慈父為照顧自閉症兒子放棄全職工作 嘆6歲後政府支援大減感徬徨)

Facing autism positively – we will see the light

Sin Ka was diagnosed with autism at the age of two. During the journey of finding suitable treatments, Sin Ka’s father mentioned it was like floating in the sea, “We’ve been searching for lifebuoys (services), but the lifebuoys we caught leaked so quick that we had to constantly look for the next lifebuoy with unknown effectiveness.” Fortunately, he stays positive in difficult times and wants to empower other parents of children with autism. Hope that the public would then pay attention on autism and government would be willing to invest resources towards the issues of autism.

Limited resources for autism

Sin Ka’s father has been taking care of Sin Ka full-time since the boy was diagnosed with autism. The doctor he consulted only advised him to apply for services from different institutions on his own. He therefore ran around to look for treatments for Sin Ka without specific directions or comprehensive information. Sin Ka was then arranged to apply for Special Child Care Centres after the father meeting with a social worker. Sin Ka is now four years old and receiving only four sessions of onsite pre-school rehabilitation services a month. Special Child Care Centres seem to be the only but faraway lifebuoy for Sin Ka and many other parents from the grassroots. Sin Ka’s father exclaimed and shared, “The government’s resource allocation is poor. We have to fight for everything by ourselves. The training quotas are very limited and the fees are expensive. The waiting time for subvented services is long as well.” On the interview day, the father received a call from a hospital. He sighed and said, “We’ve been waiting to see a doctor for more than a year. The resources are definitely insufficient.”

 

Parents have no choice but to become therapists

Sin Ka received a month of one-on-one intensive Applied Behaviour Analysis (ABA) treatment at APF’s Parents Resources Centre. Sin Ka’s father observed that his son’s comprehension and expression were improved. However, there is a lack of resources. Sin Ka’s father had to look for the next lifebuoy. He has therefore become Sin Ka’s therapist and conducts 45 minutes of home training with the boy every day. “I’m not a qualified therapist (without formal training), so I may make mistakes. Besides, many parents need counseling services and guidance. The most ideal solution is to receive professional treatment services.”

 

Build up a solid foundation at early age, strengthen public education and eliminate discrimination

Like most of the children, children with autism face a variety of challenges at different developmental stages, such as rebellion. Sin Ka’s father said, “People with autism would also face problems at the workplace and in applying for jobs. Continuous support is very important. But the government only has short-term plans; families like us don’t have sufficient services, not to mention suitable and effective ABA treatment. We should help children build up a solid foundation in their early childhood instead of solving the problems generated after they have grown up. It would be too late by then.”

Autism has long-term impacts, and because children with autism cannot be distinguished by their appearance, it may not be easy to emphasise its seriousness. Sin Ka’s father hoped that the government can set up a dedicated department to help individuals with autism and their families. Parents would worry less if they have channels to seek help promptly. He also stated that the public does not take the initiative to understand autism and there are many misunderstandings and negative labels on autism. Some people would have prejudice against the whole autism spectrum due to some specific behaviours of a single individual with the same problem. He wished that the government and other service organisations can strengthen public education and explain the challenges that people with autism and their families may encounter, encouraging the public to accept people with autism.

Take the initiative to go into the community Optimism Brings Hopes

Facing discrimination and exclusion, Sin Ka’s father has chosen to handle them positively. He does not mind revealing that Sin Ka has autism. “If I’m afraid of revealing the truth, I’ll be the first one to discriminate my son. Others will follow.” He once met a child with autism displaying serious behaviours in a park, other parents immediately brought their children far away from that child. While that child’s mother felt embarrassed, Sin Ka’s father stepped forward to encourage her and also invited them to play together. He believes that children with autism would improve if they have more opportunities to interact with others and connect with the community, therefore he always encourages other parents to bring their children out.

Sin Ka’s father also believes that children can grow up happily with positive parents and also effective and professional treatments. He shared, “Being a parent, we definitely feel sad and worry about our children. However, we must look on the bright side of things and actively help our children. For example, we can focus on our children’s little successes and accept their weaknesses. We can discover a new land, give up the frustrating lifebuoy and welcome a beautiful dawn.”

關於愛培自閉症基金 (APF)

About Autism Partnership Foundation (APF)

​​ APF是於香港註冊的慈善機構,我們一直致力幫助自閉症兒童及其家庭。我們為來自基層家庭的自閉症兒童提供免費*的密集式「應用行為分析」(ABA)治療,並且舉辦家長講座及培訓,協助家長及早改善小朋友的行為問題。APF同樣重視公眾教育,肩負上宣揚認識自閉症及接受自閉症人士的訊息的責任,以改善自閉症人士的生活質素,讓他們在社會上得到應有的尊重與權利。

​APF is a registered charitable organisation in Hong Kong. We are committed to making a difference to the lives of the children with Autism Spectrum Disorder (ASD) and their families. We provide ​complementary* intensive Applied Behaviour Analysis (ABA) therapy to children with ASD from low-income families and organise ABA skills training and workshops for parents, aiming to improve the behavioural problems of their children as earliest as possible.  APF also generates public awareness and knowledge about ASD through various public education and publicity campaigns in order to help individuals with ASD enjoy respect and rights in society.

* 需要通過入息審查 A means test is applied

聯絡 CONTACT 

電話 Tel           3583 0668

電郵 Email        event@apf.org.hk

網站 Website   www.apf.org.hk  

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