An Interview with a Mum of a Child with ASD
It is often said that children with ASD (Autism Spectrum Disorders) are like stars in the sky – being alone in their own world. For parents who take care of those children with ASD are undoubtedly a group that bears the pain of reality, but also a group of extremely strong and tough individuals, who spares no efforts on lighting the journey to the real world for their children.
Today we are happy to share with you a story of a strong mother, a journey of her and her young son with ASD.
Ms. Jia and her son, Haohao, are from Beijing, China, and they have been in our overseas consultation programs for nearly 2 years. Haohao joined Autism Partnership (AP) when he was at the age of 4 and after nearly 2 years of training with AP, Haohao is now 6 years old and will be attending a mainstream school this coming school year!
It is undeniably a blessing joy and pride for Ms. Jia as she shared with us the great progress made of her son in AP.
Ms. Jia:
Haohao was diagnosed with ASD at 2 years old. His language skills were very weak. He was not interested in anything and had weak attachment to us (his parents). The only things that excited Haohao were numbers, words and abstract matters. He had many rigid behaviors and emotional problems. His social and play skills were poor. He had no interest in communicating nor interacting with people, nor interest in playing games. He didn’t have much skills since he had no ability to learn through observation. In addition, Haohao had serious eating problems and other challenging behaviors.
What Ms. Jia mentioned above is not something unfamiliar for many parents of children with ASD. In fact, these are typical problems that many children with ASD exhibit. After having learnt that Haohao was diagnosed with ASD, Ms. Jia has consulted many other parents of children with ASD for advices. Meanwhile, she didn’t stop herself from learning more about ASD, through books, journals and documents, hoping to find a “solution” for his son.
Ms. Jia:
When I first learnt that Haohao was diagnosed, I felt that my world has collapsed. But I knew grieving would not solve the situation, so I immediately quit my job and started seeking supports from hospital and institutions, and looking for the right treatment options for my son.
My family was very supportive. However, it was hard for our grandparents to accept and they refused to believe this at the very beginning. But I thought that it was pointless to argue whether Haohao was autistic or not. When the diagnosed was confirmed, the top priority was to find the right training for him as soon as possible.
Ms. Jia devoted herself in searching for the best treatment methods and centers for Haohao. She has tried many different trainings, while some were not suitable, some were not effective. Regarding to the decision making on institutions and therapies, Haohao’s mother shared her points of view.
Ms. Jia：
The qualifications and standards of institutions and teachers are the most critical considerations, and teaching should be done systematically and professionally. I think that the training should be high-quality and intensive, and done systematically step by step to help improve and strengthen the skills of the children.
By chance from an ASD conference in Beijing, Ms. Jia learnt about AP and the intensive ABA method used in AP. She knew this was the training that Haohao needed. She didn’t want to send Haohao to overseas, so Ms. Jia decided to join the overseas consultation program, where AP helped Ms Jia to screen and hire local teachers in Beijing and provide monthly training, supervision and consultation for Haohao.
Ms. Jia:
AP consultant provided teacher training and parent training regularly. Before the training, it was challenging to communicate with Haohao. It was always an one-way communication; I asked him questions, he responded to my questions. He seldom took the initiative to express or share thoughts.
It was until I learned about a method called “Communication Temptation” from AP consultant, a method that encouraged Haohao to communicate and express spontaneously! And realized that interests could be expanded through games, Haohao gradually became more flexible towards different things and situations. The consultant also tackled Haohao’s eating problem, a problem that I have been struggled with Haohao the most.
The huge progress made during this 2 years period was truly remarkable. It gave us hope for the future.
When talking about the progress Haohao made during the past two years of training, Haohao’s mother showed excitement and delight.
Ms. Jia:
Before the training, Haohao was very robotic, inflexible, and with no problem solving skills. This was a weak area of Haohao, and AP consultant has designed many targeted programs to train up his problem solving skills, and ability to think outside the box.
One tremendous progress that I was most pleased to see, was his eating; he now can eat nicely and independently. He now can also get along with peers very well. The majority of his behavior problems have already been catered and well improved. Now, I can say no one thinks of him as a child with ASD.
Every day you will see progress bit by bit. In the training, you can see the professionalism and the clinical judgement that AP consultant applied in every moment. The programs were adjusted every month based on Haohao’s performance and changes were made to ensure Haohao was learning in the most effective and spontaneous way.
Every progress a child with ASD made is not easy! Ms. Jia shared that as a parent of a child with ASD, care and companionship are crucial. In her journey, she has undertaken great challenges as well – from an ordinary mother who cannot accept ASD, to accompany her son to find the right treatment and path, and motivate her son to learn and strive like other children. The journey is full of bittersweet and she hopes her experiences can well motivate and bring inspiration to other parents of children with ASD.
Ms. Jia:
It will never be easy for any parent to discover that their child is with ASD. I’ve truly experienced that too and was in total distress, having useless arguments with families.
But in fact, the most effective way to help your child is to communicate and take prompt sensible action. Grief and despair do not help the situation. Grief and despair will only waste your chance to seize the right time and right intervention for your child.
For children with ASD, time is more important than life. My advice to parents is: do not struggle over whether the child is diagnosed or not, but to find the right training to help the child as early as possible.
Words from the Consultant:
Teri Mok（Senior Case Supervisor）
As a consultant, it is always motivating to see children making progress. When the children are learning, their parents are learning at the same time, and they always strive and eager to learn more for their child. This is what I found remarkable about our parents, that they never stop learning for their child.
Related Program – International Consultation for Overseas Families
Please share to let more people know about ABA Therapy Skills.
Facebook: APautism
Wechat: AutismPartnership_HK
Learn more about our ABA Services [:zh]
一位患有自閉症兒童媽媽的真實獨白
常有人說患有自閉症的孩子猶如天上的星星，一人一世界，孤獨地閃爍著微弱的光芒，他們被稱為“星星的孩子”。而養育照顧“星兒”的爸爸媽媽們，無疑是承受現實之痛，但內心無比強大堅韌的一個群體。他們在為“星兒”尋找點亮通往外界之路的明燈， 始終不遺餘力。
Autism Partnership自成立起，為世界各地的家庭提供專業海外諮詢服務。我們有幸邀請到來自北京的豪豪（化名）媽媽賈女士進行了一次訪問。豪豪（化名）自4歲時加入AP，已經接受AP海外諮詢訓練有1年多的時間，如今已準備好進入主流學校就讀。談及豪豪（化名）的成長點滴，媽媽賈女士一字一句中無不流露出喜悅和自豪！
賈女士:
豪豪（化名）2歲的時候被診斷患有自閉症。之後的兩年時間裡，他的語言能力非常薄弱，眼神空洞，對任何事物都沒有興趣，也不依戀爸爸媽媽；只是單純對數字和文字等抽象東西特別興奮；有很多固執性行為，情緒問題也非常嚴重；社交方面，沒有與人主動交流的意願，也不願意玩遊戲。很少透過觀察學習來獲得技能。此外，豪豪（化名）還有嚴重的偏食問題，不願意安坐等等。
相信上述問題對於很多患有自閉症兒童的家長來說都曾或正在經歷。而在得知豪豪（化名）確診自閉症後，媽媽諮詢了很多“老家長”的意見，自己也很勤奮地查閱了很多外國文獻和書籍，賈女士的行動力也著實讓人佩服！
賈女士:
剛知道豪豪（化名）確診的時候，感覺世界都崩了。很緊張、難過。但是我馬上就把工作辭了，花了一天多的調整情緒，學習相關知識，找醫院，機構。家人都齊心協力處理問題，老人家可能不太願意接受，覺得孩子沒什麽問題。但我覺得基本上都確定了，不需要再浪費時間在糾結孩子到底是還是不是自閉症。只要發現，就一定需要盡早接受正規專業訓練。
從確診後，媽媽賈女士一直沒有放棄為豪豪（化名）尋找合適的治療方法和機構，有些訓練因為效果甚微，而有些療法可能並不適合。在對機構和療法的選擇上，豪豪（化名）媽媽分享了她覺得最重要的一些衡量標準。
賈女士:
機構及老師的資質和水準是考慮的首要因素，教學的系統性和專業性也是考察的重點之一。我認為對孩子的訓練要有高度和深度，要循序漸進地幫助孩子一點點提升加強。
在參加AP北京舉辦的研討會上，豪豪（化名）媽媽賈女士第一次了解到AP及高效密集式ABA治療方法。為了能讓豪豪（化名）在當地接受治療訓練，媽媽賈女士選擇了海外咨詢服務，聘請北京本地老師及接受AP治療顧問每月訓練督導。
賈女士:
AP顧問定期提供老師訓練和家長訓練。以前，我和孩子溝通方式有很大問題。爲了讓孩子多説話，都是問答式，示範式，所以他很少主動表達。學習誘發溝通技巧後 (Communication Temptation)，才知道原來有方法可以讓孩子主動溝通和表達。而興趣也可以透過遊戲來擴展提高興趣，慢慢讓豪豪（化名）對不同的事物及安排更靈活，不再刻板。而顧問更幫我解決了豪豪（化名）最頭痛的吃飯問題…… 用時間見證成長的力量，讓原本絕望的我和孩子一起看到希望的曙光！
談及豪豪（化名）在短短1年多的治療過程中，收穫哪些進步的時候，豪豪（化名）媽媽語氣裡透露著藏不住的喜悅。
賈女士:
以前豪豪（化名）很多東西都感覺是機械化背起來的，沒有思考處理問題的過程。現在，在AP顧問的干預治療下，配合不同針對性訓練課程，他變得開始主動動腦去想，不停推動他跳出舒適圈。我最開心看到他的成就就是，豪豪（化名）現在吃飯表現好；和同齡玩伴相處融合的也非常好；大部分行為問題都得到了很好的解決和提升，出門在外沒有人覺得他有自閉症。
小朋友的進步是點滴的，每天都可以看到他在进步。可以看到AP顧問在課程轉換和制度上從輔助削弱到自我形成監督的過程，又科學又神奇。顧問每個月都會為他調整制度，讓他從被動接受知識模式變成自主學習模式。
患有自閉症兒童的成長之路，每一步都不容易！賈女士提到全身心照顧和陪伴是最重要的。作為自閉症兒童的媽媽，她的心路歷程也發生了很大的轉變，從一個不能接受現實的普通母親，到陪孩子一起嘗試各種治療，希望他在某一技能上有小小進步，再到开始有信心讓豪豪（化名）步入主流學校，及以後融入社會。這不單單是一個母親的美好期望，更是豪豪（化名）每一個小小進步給家庭帶來的巨大動力。她更希望將自己一路走來的心得與每一個患有自閉症兒童的家長分享，以此鼓勵所有的同路人，要與“星兒”一起勇敢堅實地踏出早期干預治療的第一步！
賈女士:
當得知自己的孩子確診患有自閉症，對於每一個家長來說都如同晴天霹靂。曾經我也為此和家裡人吵架，但其實溝通和智慧地處理問題最重要。不要浪費太多時間在難過絕望，你浪費的都是孩子黃金的干預實踐。對於這些孩子來說，時間比生命還重要。家長要做的不是糾結于孩子是不是確診，程度深與淺，而是第一時間尋找合適的機構訓練，幫助孩子儘快解決問題。
顧問的話
莫渼琳（高級行為分析治療課程監督）
作為一位督導 ，見證學生的進步是一件很鼓舞的事! 在學生學習的過程中，看見家長不斷在旁學習、 永不放棄地為孩子得到更好的生活作準備的心情， 也是十分感人的。 在過去一年多的時間，豪豪（化名）的成長得來不易。 從我第一次看見豪豪（化名）時，他的學習態度、 行為管理 、表達及語言、 遊戲技能、社交技巧、自理能力和小組學習技能跟同齡的孩子相比有一定的距離。
為了幫助豪豪（化名）提升各方面的技能， 我們為他定立 一系列個人化及有系統 的課程，目的是讓豪豪（化名）循序漸進地鞏固提升各項技能的同時，亦努力為進入主流學校做足準備。語言方面，為了提升豪豪（化名）說話清晰的能力， 我們先從學習物件模仿入手， 進而學習仿說，逐步加入聲調聯繫和延展訓練， 接著引入音量調節的概念，最後實現讓豪豪（化名）在自然環境下能輕鬆自然地發出正確的音調。訓練過程中，配合輔助訓練以達致最終泛化的目的。
此外，在提升對同伴的興趣方面，我們為豪豪（化名）設立了階段性目標，及相應的活動內容。從最初的的建立同伴共同興趣、增強相互好感，到共同完成任務、體驗同伴的重要性，再到最後的泛化階段，提升豪豪（化名）的社交意願和技能。
當然，我們提供的一對一密集式ABA訓練滲透到豪豪（化名）治療和學習生活的各個範疇。如今，豪豪（化名）已經做好了上主流學校的準備，實現了父母的期望，這也令我們為之歡欣雀躍。希望他今後能夠不斷進步，為社會貢獻一份自己的力量！
相關服務 – 海外家庭諮詢服務
請分享，讓更多人了解自閉症及學習更多應用行為分析（ ABA）的治療技巧。
Facebook: APautism
微信號: AutismPartnership_HK
