ASD Journey for Children with Special Needs
This is the ASD journey of a family in Hong Kong. Isa Pin’s son was talking before most toddlers say their first word. By ten months old, he already had a growing bank of single words. By age one, he was ahead of nearly every milestone on Hong Kong’s Maternal and Child Health Centre checklist. For a first-time mum, it looked like nothing but good news.
Then, between twelve and eighteen months, something shifted. The words kept coming — but only single words, mostly nouns. No verbs joining them. No lengthening sentences. “Why has his language stayed at one level?” Isa remembers asking herself. Around the same time, a different pattern emerged: echolalia. Her son would recite entire lines from YouTube videos and storybooks, word for word, in the exact intonation he’d heard them. At first, she assumed it was simply a sign of a good memory — a boy who loved songs and stories enough to repeat them. There was also no sense of danger: climbing to dangerous heights at the playground, darting excitedly toward closing lift doors, not responding when called. It was these safety moments, more than the language quirks, that worried her most.
The Year Between Suspicion and Diagnosis
Isa raised her concerns with a nurse at the health centre when her son was 18 months old. The response: “He’s too young — keep observing.” She went back at two years old. Same answer. It wasn’t until two and a half that a doctor finally wrote the referral for a formal assessment. By then, Isa and her husband already knew, in their own hearts, what the report would say — a year of reading, researching, and watching every home video against what they were learning had already told them.
That year matters more than it might seem. Because Isa and her husband spent it educating themselves rather than waiting anxiously for an answer, the diagnosis didn’t land as a shock. “It was more like a sigh of relief,” she says. “Finally, an answer. Finally, access to the help he needed.”
It’s worth naming how differently this plays out depending on where you live. In Australia, the NDIS (National Disability Insurance Scheme) allows children under six to access funded support without a formal diagnosis. In Hong Kong, a diagnosis is usually the gatekeeper — to services, to school placements, to everything. For Hong Kong families sitting in the space between “something feels different” and “we have paperwork,” that gap can be the hardest part of the whole journey.
Seed and Soil: Rethinking the Environment, Not Just the Child’s ASD Journey
When her son started K1, the family had just moved house, changed schools, started ABA therapy, and received the diagnosis — all within weeks of each other. It was, by Isa’s own account, the hardest year so far. Full-day screaming. Leaving his seat to do his own thing. Meltdowns at every transition.
What got them through wasn’t a strict local school with rigid expectations — it was the opposite. Isa deliberately chose a small, unfashionable kindergarten in Hong Kong’s Central and Western District, not a “name” school, precisely because it felt warm and relaxed. When the diagnosis came through the week before term started, the principal and teachers called an immediate meeting. They arranged what was effectively a near full-time shadow teacher, despite having nowhere near the staffing ratio to justify it. “They didn’t have the experience,” Isa says, “but they had the heart.”
She describes her son as a seed: “If he’s a seed, then what we’re really looking at is the soil — how do we change the soil so he can grow into his best self?” It’s a mindset she credits partly to Australia’s more advanced approach to inclusive education, and one she thinks Hong Kong families would benefit from adopting even where systemic resources fall short.
Communication on His Terms for his ASD Journey
Now approaching primary school age, Isa’s son can produce a full, grammatically fluent sentence — when he wants something badly enough. Ask him what he did at school today, though, and you’ll likely get nothing. “If there’s nothing motivating him, he won’t engage,” Isa explains. It’s a pattern many parents of autistic children will recognise: rich, precise language in service of a strong want, and near silence everywhere else. Rather than reading this as regression or defiance, Isa has learned to meet her son inside his interests first — sitting alongside him, doing what he’s doing — before expecting him to notice or respond to her.
Two Parents, One Goal, Different Instincts for ASD Journey
Isa describes herself as an unusually relaxed parent — “cool to the point of extreme,” in her words — while her husband leans more traditional, believing their son needs to learn society’s rules early so he can navigate the world independently. The clearest flashpoint: stimming and echolalia at home. Isa’s husband wants it minimised, even in private. Isa disagrees. “He follows the rules all day outside,” she says. “When he comes home, I want him to be able to relax and be himself.” They never argue in front of their son — disagreements get worked through afterwards — and Isa’s advice to other couples is blunt: decide where your own line is, and hold it consistently. Children adapt far better to a stable boundary than to one that moves depending on the day.
The Gap Nobody Warns You About ASD Journey
Hong Kong’s early intervention system before age six, Isa says, genuinely rivals the best in the world. What worries her is what comes after. Children like her son — needing more support than a mainstream class can offer, but not enough to qualify for a special school place — fall into what she calls the “sandwich” group. International schools have limited SEN places and years-long waitlists. Mainstream schools may decline a child outright if they judge their resources can’t stretch far enough. Government schools in a family’s home network are obligated to enrol them — but a guaranteed seat isn’t the same as guaranteed support.
Her Message to Every SCN Parent
Isa’s closing words were simple, and she repeated them twice, unprompted: parents need to believe — in themselves, and in their child. Educate yourself regardless of where you are on the diagnosis journey. Find your people, because the SCN parenting road is a lonely one; friends who haven’t lived it often quietly drift away, not out of unkindness, but because they simply can’t relate. And advocate — loudly, specifically, and without apology. “Sometimes people don’t help you not because they don’t want to,” she says, “but because they don’t know what you need. You have to tell them.”
Listen to the full episode at blackburnslp.com.au/resources | Follow Chloe: @phd.speechie.mum
說話說得早，卻突然停住了：一位媽媽的自閉症育兒路
Isa Pin的兒子開口說話,比大部分小朋友都早。十個月大的時候,他已經懂得說不少單字。一歲時,對照香港母嬰健康院的發展指標,他幾乎每一項都超前。對一位初為人母的媽媽來說,這看起來完全是好消息。
然後,在一歲到一歲半之間,情況起了變化。單字繼續增加,但一直停留在單字層面,大多是名詞,沒有動詞連接,句子也沒有變長。「為什麼他的語言一直停留在同一個層次呢?」Isa回想當時心裡的疑問。差不多同一時間,另一個現象出現了——仿說(Echolalia)。兒子會把YouTube影片和故事書的內容整段背出來,連語調都一模一樣。起初她以為這純粹是記性好,一個喜歡唱歌講故事,聽多了就背出來的小朋友。同時,他完全沒有危機意識——在公園爬到很高的地方,會興奮地衝向正在關閉的電梯門,叫他也沒有反應。比起語言上的疑點,這些安全問題其實更令Isa擔心。
由懷疑到確診,整整一年
兒子十八個月大時,Isa向母嬰健康院的姑娘表達過憂慮,得到的答案是:「太小了,再觀察吧。」兩歲時再去,答案一樣。直到兩歲半,醫生才終於寫轉介信讓她做正式評估。但其實到了那個時候,Isa和丈夫心裡早已有數——因為過去一年他們不斷閱讀、搜集資料,將家中影片一一對照所學的知識,答案早已呼之欲出。
這一年的意義,比想像中重要。正正因為Isa和丈夫用這一年來教育自己,而不是焦急地等待一個答案,確診那一刻並沒有帶來晴天霹靂式的衝擊。「反而是鬆一口氣,」她說,「終於有答案了,終於可以取得他需要的幫助。」
值得一提的是,不同地方的制度差異有多大。在澳洲,NDIS(國民保健計劃)容許六歲以下的小朋友毋須正式確診,已經可以申請資助。但在香港,確診往往是取得一切支援、學位、服務的關卡。對於身處「感覺不對勁」與「拿到證明文件」之間的香港家庭來說,這段空隙,可能是整段旅程中最難捱的部分。
種子與泥土:改變的不只是孩子,更是環境
兒子升讀K1那年,家人剛搬屋、轉校、開始ABA治療,又同時收到確診報告——全部事情在短短數星期內發生。Isa坦言,這是至今最難捱的一年。全日尖叫、擅自離開座位做自己的事、每次轉節都情緒崩潰。
真正撐過那一年的,不是一間要求嚴格的主流名校,反而剛好相反。Isa當初特意選了一間位於中西區、規模小、不算熱門的幼稚園,純粹因為感覺溫暖、輕鬆。確診報告在開學前一星期送到,校長和老師馬上召開會議,即使人手比例遠遠不足,依然為兒子安排了幾乎全天候的Shadow Teacher陪伴。「他們未必有經驗,」Isa說,「但他們有心。」
她形容兒子就像一粒種子:「如果他是一粒種子,我們真正要看的其實是泥土——怎樣改變泥土,讓他可以長成最好的自己。」這個信念,一部分來自澳洲在共融教育上走得比較前的經驗,而她認為,即使系統資源有限,香港的家長同樣可以借鏡這個思維。
視乎動機的溝通表達
現在快將升小學的兒子,已經能夠說出完整、文法正確的句子——只要他非常想要某件事情。但如果你問他今天在學校做了什麼,大機會你什麼答案都得不到。「如果沒有東西可以推動他的動機,他就不會理會你,」Isa解釋。這個模式,不少自閉症小朋友的家長都會感同身受:當有強烈需求時,語言豐富而精準;其餘時候,則近乎沉默。Isa沒有把這視為退步或不聽話,而是學會先走進兒子的世界——坐在他身邊,做他正在做的事——然後才期望他留意到自己、回應自己。
兩夫妻,同一個目標,不同的直覺
Isa形容自己是異常放鬆的家長——「冷靜到爆」——而丈夫則比較傳統,認為兒子需要及早學會社會規矩,將來才能獨立在社會生存。最明顯的分歧點,是在家中應否容許刻板行為(Stimming)和仿說。丈夫希望盡量減少,即使在私人空間也一樣;Isa則不同意。「他在外面一整天都跟著規矩,」她說,「回到家裡,我希望他可以放鬆,做回自己。」兩人從不在兒子面前爭執——分歧會在事後再談——Isa給其他夫妻的建議很直接:自己先想清楚底線在哪裡,然後堅持下去。比起一時可以、一時不可以,小朋友更能適應一條穩定不變的界線。
沒有人事先提醒你的斷層
Isa說,香港六歲前的早期介入服務,水平其實可以媲美全球最好的地方。真正令她憂慮的,是六歲之後。像她兒子這樣的小朋友——需要多於主流班別能夠提供的支援,但又未達到入讀特殊學校的門檻——正正落入她所講的「夾心」群組。國際學校的SEN學位有限,輪候動輒數年。主流學校如果認為資源無法應付,也可以拒收。校網內的官立學校雖然有責任收生,但「有書讀」跟「有足夠支援」是兩回事。
給每一位SCN家長的話
Isa最後的說話很簡單,她甚至不自覺地重複了兩次:家長一定要相信——相信自己,也相信自己的孩子。無論你身處確診旅程的哪個階段,都要不斷教育自己。要找到屬於自己的同路人,因為SCN育兒路是孤獨的——那些未曾經歷過的朋友,很多時候會不知不覺地淡出你的生活,並非無情,只是他們真的無法感同身受。還有,要主動、具體、毫不猶疑地為孩子發聲。「有時候,別人沒有幫忙,不是因為他們不想幫,」她說,「而是他們不知道你需要什麼。你要親口告訴他們。」
完整節目收聽：blackburnslp.com.au/resources｜追蹤Chloe：@phd.speechie.mum