A parent's sharing on autism treatments

VILL

Some people often make use of the psychological condition of the parents wth autistic kids to make money for their own.  The parents with autistic kids are very desperate and hope their kids would be recovered from autism one day. I am also a parent like that.

My kid 11 years old is autistic and tried many therapy treatments like biomedical, acurpuncture, natural therapy, music therapy, ...taking many supplements...for many years. The effect is not significant or no effect. I've realized that some scientific-like therapies are in fact not scientific. The so-called experts are really over-priced the treatment fee for making huge money from this group of parents. To a certain extent, it is not very moral.

The parents' time with the kids is the most important factor for improving the autistic condition. Since 5 years ago, my kid stopped trying the alternative treatments like biomedical, acurpuncture and natural therapies, etc.  The training methods like Louis Program, floor-time and sensory integration exercises etc are found effective and useful to my kid. Once the parents leart these methods, the parents themselves can train their kids at home / playground.

a328

i can't agree more, I did met a psychiatrist who is unethical as well just 2 months ago, more worse is he is my husband friend ( not really a familiar one ). He had conducted 2 tests with our son and give us the the strict mark to make us feel our son really have problem and very severe, and keep emphasizing the test he perform is very accurate and he is not very strict already bla bla bla.... He never describe how will the test will be conducted like the time need, need parent involve or not, unless we make a strong request

When conducting the test, he is very clumsy which make you feel he is not familiar to conduct the test and not experiece to handle kid ( my son is just below 3 ), i almsot make a lot of help to conduct the test beause my son dun like him at all, he is not such person which kid will find him approachable ( neither adult will feel he is approachable )

he turn on keep saying government service and assessment is suck ( he dun want us to  ask governemnt to do the assessment ) and the program like floortime, sensory integration is useless and he can tailor made sth for our son. He claim he study neuroscience as well and only 2x people have the same high level of qualification as him in Australia

However he never disclose what kind of treatment, he seems just expect us to pass the son to him and he will close the door to do the treatment, and he just concern the money, more worse is each time he use the 'miscalculation excuse' to charge us more.

when explaining the report, this is the worse part, I totally dun understand what is he talking about, end up I need to find my friend who have done the test or her child to explain the report to me. that is totally not professional!!  He keep emphasizing and exxagerate my son bad part and the good sign he just left it, the report  is just a very short one and when we request slightly detail, he need to charge us , and he never mention at the begining what will include or exclude in the money charge.

End up I went to other private centre to seek for 2nd opinion, i also went to the government to do the assessment ( not the same assessment ) turn out the private centre and the government make the same conclusion - my son is not as worse as the report describe, he did have some asperger character but he core one does not exist and he is not serious one.


Right now I am consulting my 2 friends who are psychiatrist in USA for consultation, one of them working state child hospital and have done the research on autism for several years,  one of them are working for government, they provide many valuable information about parenting at home, they never ask me for money and just concern my son development and progress. I am not asking for free service, I just want to emphasize U can feel the good one and bad one.

My experience is if you have meet a psychiatrist who has threat you about how serious ur child is and keep say some bad word for other service outside and he is jsut the one can help ur son, please seek for 2nd or even 3rd opinion.  Also if u met someone who rarely teach you parenting skill and just expect you to pay him money for treatment, run away please.

a328

1 more thing, I just follow my friend suggestion to do more social interaction activity at home and to improve his eye contact, my son have a great improvement already just for a month. (I did join the course outside but at this stage just lining up, therefore just DIY at home recently )

sochi81

謝謝分享。籍這些機會揾錢係好唔道德。好與壞真係有比較就知。

Ononma

Hi a328,

請求可否分享吓在家父母可以做什麼去train-up 小孩，特別係 eye contact 和 相向溝通嘅 social skill?  

a328

if he request sth, he must ask me and look into my eyes, if he is not looking at me, i will hold his hand to my chin, then he will look at me.

when u pass him sth, do not let go ur hand at once, let ur kid use some force, then they will look at you.

when i read storybook, i will ask him the content inside like asking him what animal si that, is the girl crying etc.

If he like to play lego, try to buy a set with bldg, let say my son like ambulance, i but a set with hospital, then play the lego house with him with him, pretend someone injured, need to lie on bed etc

if bldg block, try to build up one by one with u, ur turn, then his turn, build it as 'group project'

each day ask him what he ave done for today, if he is not able to answer, try to give him an answer or him and ask it is yes or no etc.

give him some little reward if he is doing good to encourage him, for me his reward is 20 minutes Thomas and Friend TV progranmme, or some snack or go to the park or swim etc.

play bubbles at park, point to the bubbles or ask ur kid to point.

keep-calm

Thanks for your useful tips! I'm still very frustrated on what training I can arrange for my kid. Can you please share what formal training your son is having now? Any experience with ABA?

a328

i am lining up, not yet start

Ononma

A328,  

好多謝你嘅分享！有D points 我已經做緊，係幾有效的，其它 points 我會開始試，真係吾該晒！

a328

buy some small figure for role play.

cooking set / tea set is very good for interaction.

Ononma

a328, 你招 "hold his hands to my chin" 好有效，我試左幾日，萬試萬靈，有效過我用雙手碰起亞仔個頭向住我，

Ononma

a328, 你招 "hold his hands to my chin" 好有效，我試左幾日，萬試萬靈，有效過我用雙手碰起亞仔個頭向住我，

Ononma

a328, 你招 "hold his hands to my chin" 好有效，我試左幾日，萬試萬靈，有效過我用雙手碰起亞仔個頭向住我，

a328

glad that it work, i was taught by the nurse as well :)

a328

Point 3 修正一下：
如你俾一包餅，pass 俾佢時唔好放手，鬥下力，佢一望你先放手。個point 係俾佢知唔望唔俾，一望即俾。

Ononma

A323, 你真係好有心，我又試左你個方法，比玩具佢之時 我用雙手hold 住，佢一慣作風吾望我，就想直接取玩具，我就同佢講，要望住我同埋講 thank you,

試左幾次又得啦，好開心，我要教埋屋企人同姐姐先得

Ononma

同埋又感謝樓主出呢個post, 分享自己嘅經歷，仲令我有意外收穫。

其實我一路覺得自己個小朋友有D問題，雖然拖拖吓，好彩自己注意又間吾中有人(包括老師）share吓小小方法, 睇住佢一路有進步。

之前同家庭醫生傾過，佢話社會進步左，資源多左，有好多以前無人去留意嘅問題現在都有人去留意，並且可以做訓練，只要我地肯 pay。

佢話睇住我個仔不斷成長又有進步，或者某方面比同齡小朋友弱，但不至於係去到要好擔心。最後佢 suggest 話如果擔心，可以先搵私人評估（我 feel 到佢話CAC 多數會覺得問題吾嚴重）

再睇埋呢個post D分享，我又再繼續全家人一齊努力，多D比時間同個仔溝通，觀察佢嘅發展，再作打算。

a328

其實去cac不防，keep 住做training 便可，大口環話我個仔is neither autism nor asperger, but 有少少特質，keep 住training is fine, 我地自己train 1-2 months, already see the progress, suggest u to visit autism speak website，好有用！另政府會offer some seminar for parent. 政府要排，早好過遲，唔好逃避。另政府even 資源不足，但如做正式assessment, 你係就係，唔係就唔係，they won't tell lies, yes they will admit need to wait for the service, but they won't give u a wrong diagnosis. So you can trust them.

a328

另外我先生join 咗個online training, about floortime , 以便自己train, 我個仔較特別，唔留心較難發現佢有問題，我同朋友話我個仔有少少特質，，they all very surprise. 因為最typical and core 嘅症狀冇係佢身上出現，佢只係有的週邊嘢，大口環個醫生都話要好留心先注意到佢有症狀。although he is not autism or asperger, 大口環鼓勵我地做training, 丨keep progress, 唔好退步。

Luckily Step 終於有位，開始做training, 另外樹苗軒報感統及社交speech.
Anyway, 加油！

Ononma

A323,  我想問吓去CAC 評估要排幾耐？

同埋可吾可以介紹我join 個online training?

Thanks!