美国教育博客

雷春的分享： 有没有家长帮助孩子在家自学？我记得Steve Jobs自学了不少数学。那些不愿意听讲的孩子如果培…

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雷春的分享： James Patterson 写的”Against Medical Advice&…

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来源：姐妹群之家庭关系   ZL：“关于夫妻和睦，圣经里讲：顺服就是蒙福。丈夫是一家之“头”，如果妻子尊重他们…

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  来源：姐妹群之家庭关系 问题一： H: 我现在和老公吵架时尽量忍。因为怕伤着孩子。我选择离开。但是还是能到…

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女儿8年级，被学校 suspension 一天，因为打了一个bully 她的男同学一拳 (女儿空手道黑带 ),…

Read More “天目一群：关于Bully的讨论” »

自闭症的孩子前额叶的连接不畅，后脑视觉神经发达，他们的思维是以图像的形式来表现的，没有语言，要变成语言有一个艰难的转换过程，需要从小得到训练。SM是焦虑抑制了语言中枢的神经。机理不同。

自闭症孩子的社交焦虑是因为他们不会用语言表达造成的。SM的社交焦虑是害怕受到评判和对陌生人不信任造成的。还是有区别。

经历我女儿三年的SM, 我回头看看，觉得我们父母可以帮助他们的是：1）把他们当正常人对待
2）当他们不愿意说话或做某件事情时，尊重他们的意见，千万不要强迫。
3）希望他们的老师是温和，有同理心的老师，在班上对待他们就像对待其他同学一样。
4）常常要让你的小孩知道你爱他，你理解他，你会尽你全力支持帮助他。
5）如果你觉得你参与小孩的活动给他一种安全感，而不是压力感的话，那你的参与是多多易善。

当时我在学校参与很多，同时又在教会当她班上的老师。

若学校的老师不理解这样的孩子，需要和老师沟通。还不行的话，我会考虑转学。

其余的都是因人而异。即使是SM,每个小孩都不一样，我们做父母的需要敏感一点。

窦维平：@雷春G12B15Fort Collins, Colorado 这个群估计内向的、有stage anxiety的孩子较多，可不可以清专家针对这些孩子还个讲座？
我们孩子还是相当不同的，有两点我比较struggle。1)上台可以表演比如弹钢琴一点没问题，但是不愿对着大家说话；2)跟完全陌生的人说话时不愿看着别人。
有合适的建议欢迎大家提供

蔡华俭：都属于社交焦虑或社交恐惧类的，需要多带出去进行群体活动。

Xiaoyan: 我老二以前在学校不轻易开口, 和熟悉的人在一起时没问题。后来我发现她和比她小的孩子, 就算不熟悉也敢说话, 就有意地找一些比她小一两岁的, 或者和她同龄但是各方面比她弱一些的孩子和她玩。感觉她开朗很多, 在学校也敢讲话了。所以有时觉得孩子不在外面讲话, 其实是自信心不够, 我们应该先树立她的自信心。

Sandra Liu: @ 窦维平 不愿说话要尊重孩子的意愿和性格。“不能”说话才是SM。她们很想说单身anxiety让她们不能震动声带或不能控制soundbox 肌肉。 是因为anxiety产生的肌体组织功能丧失。

Junelu: @Sandra Liu 说的非常好！ [ThumbsUp]。I could not agree more ! It took my kid three years to reach the first milestone: whisper to her teacher at school. Now, She is doing very fine at school, even better than her older sister.
For SM kids, never ever PUSH !
Keep in mind that it’s the anxiety that is the root cause, push will only make it worse.
We parents need to focus on how we can provide them a relaxing and comfortable environment so that they eventually will feel comfortable to come out. Last night, I was reflecting on what I have done during that time period and tried to pinpoint what helped her most.
I just could not single any out. I guess it’s a collaborative effect.

Sandra Liu: @junelu whisper 是孩子自己的能动性起来了。真为你高兴。很快了。加油。

Junelu: But we parents do need to have acceptance and love: accept them as is, love them who they are unconditionally.
@Sandra Liu thanks! That happened 4 years ago when she was in kindergarten. The minute she whispered, I knew she would be fine. [Grin]

Sandra Liu: 坏消息是孩子可能SM，克服之后，99%仍是个anxiety爆棚的孩子。在各方面都容易表现出来。我女儿在小学前克服SM，坚持到三年级，虽然老师说没问题，我观察到孩子放学回来好像self regulation 已经耗尽的样子。越来越坏。三年级第二个月我就给她转到一个放羊学校。有点像“床前的小豆豆”学校。直到8年级。孩子现在性格坚毅，兴趣广，非常独特出色。@junelu 说的对，关键是减压再减压。这些孩子自我意识超强，减压之后焕发出的能动性比家长能引诱出来的不知道高多少。我每天感恩不尽！
@junelu OK，我太紧张了[Smile]当年的挣扎太痛苦。黑暗中摸索。网上找了一个SM组织，后来发现很不health表示家长彼此帮助的。 真希望给所有在摸索的妈妈爸爸们一点亮光！

Junelu: I know. It’s a tough journey and battle. I’m willing to help to shed any light. Still trying to gather my thoughts. Now only have the principles in mind.

Sandra Liu: 焦虑症不是public speaking 的问题。同意。我们家长先要稳住。我在AT&T工作，原来电话的网路设计是由一位严重害羞，非常不social的朋友一个人设计出来的。Jerry Ash. 我认识他时他都快退休了。我伸手，他竟然不伸手握手，反而脸红红的很不礼貌的样子。后来成为朋友。他太太EQ很高。学术会后的晚餐基本是他的代言人。 allow our kids be themselves, but help them to overcome anxiety disorder. 我们帮孩子忙的。we are only helpers not our kids owners.

Jinghua: 我家老大上幼儿园好几年都不怎么说话，只跟最好的朋友说。老师说他是沉默的反抗。跟中国人在一起就很愿意说。上台表演一点不紧张，但是要他当着大家说话或者唱歌，那就是难为他了。两年音乐课，愣是没有开口唱过歌，我很多次都要崩溃了。后来逼的太狠，他直接要求退出音乐课。早点知道这个是SM就好了，走了很多弯路。

Sandra Liu: @jinghua 不要逼逼没有用。跟孩子真是斗勇斗志[Grin]。

Jinghua: 所有的人都告诉我，既然他跟说中文的大人说话没有问题，那就没事，可能是英语落后。我们儿医也这么说，我觉得哪里不对，又说不上来。
后来我也明白了，现在他又肯去上音乐课了，虽然每次换新班就会别扭一下。

Sandra Liu: 我是在理解孩子之后，第二天孩子就开始whisper了。第二个奇迹是3个月后，我送孩子上幼儿园。正好学校有演出，当时音响坏了，冷场，我自告奋勇，抱着孩子上台，帮她唱一首她最喜欢的歌，给小朋友们。我唱歌很不好，第一遍太高了没唱下去，第二遍太低了没唱下去，第三遍才勉强唱完。孩子在我怀里僵硬的像一个石头。我觉得好心办坏事，非常内疚，向她道歉。她说“不，妈妈你很勇敢”。當天下午她開始大聲喊著說話，喊了一個星期，声音正常了。 她接纳了我的要命的尴尬情形，竟然自己克服了anxiety。 回想起来，这个孩子真是特别tough。让妈妈感动。 带孩子，尤其有问题的孩子，关键是制造机会，给环境，让他们里面的能动性起来。 尔后他们彰显出来的能力，能吓我们一跳！ 孩子们向上的能力太强了。我们只是负责让这个小火山喷发起来。
看上去像吹自己[Shy]。事后我想了又想，非常感叹孩子向好的心和努力的力度。我当时让她上两个学前学校。一个是她自己学校，一个是我们区中心办幼儿教育课的实习班 每个“小白鼠”有两个高中大哥哥姐姐带。每周四个半天。我变成12 点上班5点下班，晚上再补一点。事业一落千丈。家长这些实实在在的努力，孩子都知道。孩子的努力，我们可能看不见，但已经在积累。全家都是必胜的信心 （只是不知道哪天才能胜），我们做能做的，其他耐心等待。 她的whisper，她的喊话都突如其来，好孩子已经积蓄了多么大的内能啊。 分享了鼓励大家。孩子们比我们还想改变。我们是facilitate.
难处只是能不能真正接纳孩子 as-is。我老二非常善良，有点懦弱，不自信。今天学校有表演。完事了孩子们追逐嬉戏，我二女儿推个大拖把，一边拖地，一边很开心地看同学们玩。满脸都是笑。把个地拖的好像也在和同学一起嬉戏一样。我事后就夸她，“多么美的一幕啊”。其事我和老公对她的懦弱都挺犯愁。一次次讨论如何鼓励她改变。屡不奏效。最近意识到她就是她。也很美。将来谁娶她可有福了 （但娶我大女儿就得很她一样tough）
孩子不让我们改变她们，我们只能改变自己。
我大女儿说 “妈妈你本来是个tiger mom by nature. 我粉碎了你的虎妈梦，让你变成普通妈妈了”。 小家伙看得很准。孩子们教我们，还可以治愈我们自己的很多心态病。
大女儿说这话时11岁唉。这个小SM后来让妈妈心醉！

自闭症：mrspock的回答
Judging from all of your conversation, my son, at age 25, is probably the oldest. When he was diagnosed at age 3.5, ABA was still considered controversial. Fortunately we were able to provide our own ABA program and he is doing well. He has 3 part time jobs (TJMaxx, CPA office, Insurance office) and enjoys playing saxophone, drum, and sing in a band that performs weekly. When he was young, he was super afraid of music and high pitched noise. It’s not until he was 19 years old when he went to music camp, started by his older sister for Friends of Children with Special Needs, and a flute teacher discovered his musical talents. So DO NOT GIVE UP. Your sons and daughters may not have special talents but will surprise you someday with his/her abilities. I firmly believe, with proper training, guidance, and love, they will all learn more and find a life of happiness. It may be as simple as enjoying Disney characters, or reading the same books every day. But do you know they are pure, simple, and happy in their own way!! If we don’t judge them with our worldly standards but try to be in their world, it will relieve a great deal of stress on ourselves, as well as our children and other members of the families. Accept them as they are, while do our best to help them learn basic communication and living skills. Find something they enjoy and let them be who they are.

下面是谢刚博士希望我转发给大家的：这位是我们 Fremont 的 王医生，Friends of Children with Special Needs 的创始人。应该对您的 自闭症群有用。

转一个有special needs 孩子家长的分享：Judging from all of your conversation, my son, at age 25, is probably the oldest. When he was diagnosed at age 3.5, ABA was still considered controversial. Fortunately we were able to provide our own ABA program and he is doing well. He has 3 part time jobs (TJMaxx, CPA office, Insurance office) and enjoys playing saxophone, drum, and sing in a band that performs weekly. When he was young, he was super afraid of music and high pitched noise. It’s not until he was 19 years old when he went to music camp, started by his older sister for Friends of Children with Special Needs, and a flute teacher discovered his musical talents. So DO NOT GIVE UP. Your sons and daughters may not have special talents but will surprise you someday with his/her abilities. I firmly believe, with proper training, guidance, and love, they will all learn more and find a life of happiness. It may be as simple as enjoying Disney characters, or reading the same books every day. But do you know they are pure, simple, and happy in their own way!! If we don’t judge them with our worldly standards but try to be in their world, it will relieve a great deal of stress on ourselves, as well as our children and other members of the families. Accept them as they are, while do our best to help them learn basic communication and living skills. Find something they enjoy and let them be who they are.

我在这篇博文里讲到这个孩子： http://www.overseaswindow.com/node/5963

@雷春 Thx for posting the piece from dr 謝剛 it’s the story of my son, first written here last night to hopefully support the hope of many parents here.

Check out this link. http://youtu.be/wKK160wPyoI

http://mp.weixin.qq.com/s?__biz=MzA3NzU2MjAwMQ==&mid=204345237&idx=1&sn=17fe380a2be9b59c1aad71da53a35cab&scene=1&from=groupmessage&isappinstalled=0#rd

如果你是在kaiser保險 可以考慮加入這個data bank
www.acphd.org/ddc

Spread the word! The child/young adult with autism does need to be a Kaiser member.

New Autism Family Genetics Study Launched

Quality

A three-year study of families and children is designed to make lives better by helping to speed the development of autism treatments and preventions.

By Janet Byron, Senior Communications Specialist, KP NCAL Division of Research

A new Kaiser Permanente study will gather genetic material from 5,000 member families in order to undertake urgently needed research on autism spectrum disorders.
“Our goal for this new research bank is to create a resource that helps guide the development of effective autism treatments,” said Lisa Croen, PhD, director of the Autism Research Program at the Kaiser Permanente Division of Research in Oakland.

Autism is a relatively common neurodevelopmental disorder — defined by impairments in social interaction and communication, and restricted and repetitive patterns of behavior — that occurs in 1 in 68 children.

“We don’t know what causes autism, or why it is increasingly prevalent,” said Croen, principal investigator on the new research bank. “This study can point us toward the answers.”
With the Autism Family Research Bank, researchers will for the first time have access to detailed genetic, medical, and environmental information on “trios” — two biological parents and their autistic child under age 26. (All data collected will be fully de-identified to protect member privacy.)
Research on twins and families has provided strong evidence for a genetic contribution to autism spectrum disorders, while a growing body of evidence also supports a critical role for environmental factors, especially during gestation and the early postnatal period.
The Autism Research Program received a $4.6 million grant from the Simons Foundation to create the autism research bank over the next 3 years, although the data will continue to be available to qualified researchers for years to come.
Because autism is a complex condition involving many genetic factors interacting with environmental conditions, studies require very large numbers of families to participate in genetic epidemiology research to find the underlying causes.
“Large numbers of participating families will also help speed the development of autism treatments and preventions by enabling the identification of patterns that would not be apparent by looking at each person individually,” said Neil Risch, PhD, director of the UCSF Institute for Human Genetics and co-investigator of the Autism Family Research Bank.
Members of Kaiser Permanente Northern California who have a child under age 26 with an autism spectrum disorder are being directed to email autism.research@kp.org or to call 866-279-0733. Researchers will be in touch this summer to request blood and/or saliva samples from both biological parents and the child with an autism spectrum disorder, and for completion of a short questionnaire.
“Family participation is critical,” Croen says. “We can’t do this without Kaiser Permanente members.”

NBC’S DATELINE INVESTIGATES AUTISM’S ‘AGING OUT’ CRISIS IN “ON THE BRINK”

Kate Snow Shares Powerful Stories Of Young Adults Living With Autism And Their Families’ Desperate Search for Specialized Support

Dateline’s “On the Brink” Airs Sunday, April 12 at 7pm/6c

NEW YORK – April 9, 2015 – On Sunday, April 12 at 7pm/6c, NBC’s Dateline will air “On the Brink,” a powerful new report, three years in the making, that puts a spotlight on autism’s ‘aging out’ crisis. Over the next ten years, an estimated half a million young people with autism will turn 21 and ‘age out’ — losing their eligibility for help through the education system. The stability and structure they have had nearly their whole lives will end, and there’s no equivalent support system to take over. “On the Brink” takes an unprecedented look at the lives of young adults with autism and the extraordinary measures parents take to provide their children with specialized services and a better future.

Over a three-year period, Dateline chronicles the raw and emotional journeys of two New York-based young adults with autism and their families, as they transition from graduation to adulthood and make a leap towards an uncertain future. NBC News National Correspondent Kate Snow interviews two mothers who devote their lives to caring for their sons and helping them find a voice. Snow shares their heartbreaking stories and the tremendous challenges of navigating a broken system of programs that will allow their sons to progress in life. “On the Brink” documents both families’ ongoing fight to help their children and revolutionize the way autism is perceived in the U.S.

“We spent countless hours with these two families for over three years and it truly was an eye-opening experience,” said Snow. “It’s one thing to know that services end for people when they turn 21, and it’s another to see it play out. We are grateful that both families allowed us into their private lives, so we are able to share their compelling stories and shine a much-needed spotlight on this important issue.”

Snow also speaks about concerns surrounding the ‘aging out’ process with Sharon Lewis, Senior Advisor on Disability Policy to the U.S. Secretary of Health and Human Services, and Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, a non-profit organization devoted to studying the issues facing adults with autism.

Watch a preview of “On the Brink” here: http://www.nbcnews.com/dateline/preview-brink-n338436

Early excerpts from Snow’s interviews will air on TODAY and NBC Nightly News, Friday, April 10. Dateline’s “On the Brink” airs Sunday, April 12 at 7pm/6c on NBC.

http://mp.weixin.qq.com/s?__biz=MzA3NzU2MjAwMQ==&mid=204314064&idx=1&sn=ffd7058c0c86a23c85c1835c1435b605&scene=1&from=groupmessage&isappinstalled=0#rd

Reading the earlier posts about genetics, sibling issues, I’d like to provide some science based answers.

sorry I type Chinese way too slow so using English. If anyone would like to translate this into Chinese and share with those in China, or those here who do not read English, please feel free to do so.

First, I’m a father of a 25 year old son with autism. He has an older sister, nearly 3 years older, and a younger sister, a little over 5 years younger. I am a physician, although trained and practice Internal Medicine so do not see children so do not have more than a handful of patients with autism. I am also on the Community Advisory Council of the MIND (Medical Investigation of Neuro-developmental Disorder) Institute, a premier research institute based in UC Davis doing research primarily on autism. I will qualify my statement by indicating whether my comments are research based or more my personal observation.

About genetics, this is research based and pretty up to date information. The current belief, based on the California Autism Twin Study conducted by UCSF, Stanford, UC Davis, etc with nearly 200 pairs of twins (some monozygotic, some dizygotic), is that genetics is responsible for roughly 55% of autism cause and environment about 37%. And because autism appears to start at a very young age, the environmental influence appears to be at a very early age, or even in the womb.

In the old days, some small studies have shown 90% concordance rate (both twins having autism) for monozygotic twins so autism was thought to be largely a genetic disease. It is no longer true.

Other studies have shown siblings (non-twin, different age siblings) rate of concordance between 3-14%. This is in answer to the question someone posted about concern about having another child. I had the same concern about my 3rd child. Since she was a girl, the rate would be much less than for a boy (as you know the rate of male to female is about 4 to 1).

Now the part that isn’t science. My own experience, and my observation of many other families with autism and normal developing siblings, is that it is definitely a positive to have a sibling for the autistic child.

Whether it is positive for the normal developing sibling is less certain. In my case, it was great for all. Both sisters just love my son and they are very helpful in helping him with social skills, communication. They form the base of “play groups” and bring their friends too. They also benefited by learning that there are people who are different and perhaps less fortunate. They learn to love people more and both have done a lot of volunteer work in different areas.

My youngest did have some concern about showing her friends she had a brother who is different. She also felt a little left out since the family’s focus was on her older brother ever since she was born. But as she gets older and matures into her teenage years, these feelings disappeared and she was proud of her brother’s overcoming so much difficulties and she became his best helper. She also volunteered in the organization I and my wife helped to found to support mainly Chinese families with disabled children. She took on a very young autistic boy and essentially became his older sister, helping him in our programs for some 8 years, watching him grow up. This boy is fairly severe and has little language and is hyperactive. But he responds to her very well. It is a great learning experience for my daughter, and helped someone in need at the same time.

@sophia Heavy metal is considered one of the environmental factors. However this probably accounts for a very small number of cases.

Just so that we’re all on the same page. This is not totally science based since no research has been done to prove it. But in generally all mainstream autism experts believe “autism” is not one disorder. It is simply lumped together based on a set of diagnostic criteria. It is really a “syndrome”, or a group of symptoms. It is like running nose+sore throat+cough and + possibly fever is what we know as “cold”. But it doesn’t mean we knew at the time this condition was described that it was caused by a virus. Similar symptoms can be caused by allergies, other infections, etc. So “autism” as defined today should not be thought of as having one cause. In fact, most experts believe there are numerous causes. This is partly why it’s so hard to find “the cause”. If we study 100 children with autism by comparing their genes, environmental exposure etc, and there are 25 causes, we won’t find any statistically significant pattern to determine any cause.

I remember seeing something about genetic testing for parents or the child with autism. There has been numerous studies on this and many genes were found to have some link to autism. But none is even close to being predictive, again because it is likely an interaction between many genes plus the environment that cause autism. So don’t believe people who tell you they can do a test and tell you whether you have the “autism gene”. There’s no such thing.

Fragile X is a well defined genetic disorder that makes children behave with autistic patterns. It is one of the causes of autism, but again it’s not 100% and only a very small number of autistic children (and adults) have Fragile X.

Gotta get back to work. Will continue when I have time. Sorry I’m so darn busy I cannot answer individual questions or I won’t get anything done in my life. If you have questions you can post it here and I will answer some (sorry, cannot answer all as my life is already busy enough) I think may benefit others. Like all of you, I’m a parent. I’m not an expert in autism but I have scientific training in medicine to help decipher some of the confusion and am happy to do so. But don’t think my word is the bible and take it as you see fit.

UCLA 和UCSD 都是自閉症研究重點中心。UCI 比較不清楚

GI issue for autism is very controversial ever since the days when my son was diagnosed back in the early 90’s. ‘Leaky gut’ is the center of this controversy. When I have more time I can write a simplified summary about the theory and controversy.

Generally speaking, if gluten and/or caseine free diet isn’t too hard to implement, I would say give it a try for 6 months and monitor. Testing for gluten sensitivity might be helpful but by no means definitive.

Because there’s variation of behavior, it’ll take time to see progression. There’s also residual gluten and caseine metabolites in the system that takes time to clear. So it’s best to do it for a long time.

It does need to be completely gluten and/or caseine free. I’ll write about the theory behind this so you’ll know why even a little bit of caseine may not work. Gluten is less so

The theory behind Caseine causing autistic behavior is as follows. I stress this is “theory”, not scientific fact.

In our nerve system, the communication is done by substance called neurotransmitters. There are various kinds of neurotransmitters. And most are “peptide”, or a molecule made up of amino acid. Proteins are peptides, but much larger (longer) than the neurotransmitters. Caseine, as the mild protein, is theorized to contain amino acid sequences similar to some neurotransmitters. Protein molecules, or even peptides of significant size, cannot cross the gut surface to go into our blood stream. Usually our digestive enzyme cuts such molecules into amino acid to be absorbed and used. If the gut is “leaky”, it may allow peptides to cross and get into the blood stream. If this peptide happens to be similar, or identical, to some neurotransmitter, it will confuse our nerves and brain. Usually neurotransmitters are tightly controlled with our own neuron’s signals. This is like a communication system such as telephone switch board or in a computer. When additional, uncontrolled random signals get into the system, you can imagine the confusion it will cause.

as to whether it should be continued lifelong, there are two “theories”. One is that of course it has to be continued as such confusing signal will affect people at any age. The other side of the argument is that, while the child’s brain is still developing and can be “damaged” by such confusion, a mature brain may have ways to sort things out and not be affected by it as much. Neither has scientific research backing it up, as far as I know (I’m not closely following this any more so it’s possible there might be some research study more recently published showing one way or the other).

BTW, “leaky gut” is not a universally accepted science either. There’s still a lot of argument over whether it exists? Or if it does whether it really leads to problems like the above, and a whole slew of others many non-traditional medicine people claim.

I want to provide some background too, on my comments. There are different levels of strength of evidence supporting some theory. The strongest is something out of controlled, doubled blind study. These are very very likely to be true. There are other evidence that is derived from some studies by comparing population groups doing different things, while controlling for all other variables (making the study and control group otherwise the same except for the variable being studied). these are pretty good too, but sometimes is subject to confounding factors. For example, there was a statement above that dementia is highly associated with “leaky gut”. I have not studied this so not sure if this is true. If it is, people may draw the conclusion that leaky gut causes, or at least leads to dementia. But maybe there’s some factor X that cause both dementia and leaky gut. And neither dementia causes leaky gut nor leaky gut causes dementia. They just happen to co-exist. So this degree of evidence is good, but must be taken with a grain of salt.

The next level is observation, like “his child has autism and did the GFCF diet and got better”. This is pretty unreliable since nearly all autistic children are also doing other therapy in addition to diet. And there are cases of spontaneous improvement of autism in kids without doing much of anything. And autistic behavior also improves with age. This is a good start to think about doing real scientific research on this topic, but by no means should be considered as facts. The last is some theories that have undergone research and proven to be false. There are not too many of these in autism yet since we’ve not done enough long term studies.

And of course all scientific research is based on statistics. It is basically saying that it is very very likely to happen each time such variable is applied to such disease/behavior, etc. But statistics isn’t fool proof. You can say that if you buy a lotto ticket you pretty much is not going to win the grand prize. But every so many drawings someone does win the grand prize. In the case of science research, buying a lottery ticket would be considered throwing money down the drain and it’s “proven a bad idea”. But anyway, we all know the odds of winning the lotto so in the great great great great .. . majority of the cases, research finds will hold.

Sorry to be so long winded. Just want to explain how I look at things and why sometimes it may seem like I don’t agree. It doesn’t mean I’m always right. Just means there’s a very high probability I would be right. Same should be applied to anyone else trying to sell you something or some service. At least I don’t intend to profit from information I provide here.

@mrspock 你是研究什么的？你的逻辑思维非常强，表述简洁易懂，论证基本符合事实也很严谨。大赞！谢谢分享！希望其他家长看得明白！

@mrspock 你怎么看疫苗？

Thanks. Gotta do more work. later!

Have a few minutes, thought I’d answer a few questions and give a bit of my experience.

To answer what I do, I’m an internal medicine doctor, practicing adult primary care. THE most important trait for a doctor is to be able to critically evaluate evidence since there’s so much mis-information in the very lucrative medical field. And I remember the Dean of my medical school’s speech during new student orientation. He said “starting today you will need to be careful with what you say. A doctor carries great responsibilities and credentials. Others will believe what you say so be sure to think twice before you say anything”. I remember this very well until this day, 35 years later!

As to blood brain barrier, some neurotransmitters can cross blood brain barrier. And they do not need to get directly to the brain to cause confusion in the nervous system since the sensory nerves all over our bodies feed signals to the brain based on inputs from its own (like ear for hearing and balance).

Also want to provide my basic rule for whether to try something.

Because so little research has been done on the exploding forms of “treatment” for autism, I cannot just rely on scientific evidence. So I follow the following basic rules you may want to consider.

It is actually very basic cost-benefit analysis. 1) Unless it is proven effective to be worth it, it should not cause harm (minimal side effect). This harm doesn’t just mean physical health harm. And it doesn’t mean just harm to the child. For example, if you’d like to try gluten free diet, but your child doesn’t eat much of anything and taking away gluten will cause malnutrition, you would want to think twice. And if making a child take Vit B6 creates serious commotions in the family each time the child resists taking it, you should also reconsider.

2) Unless it’s proven therapy, you should consider the cost. I know we would give anything to help our children improve. But spending too much money on one unproven therapy may mean you cannot afford to pay for another, more effective therapy.

3) Therapy should some common sense. shining some “special light” on the child makes little sense it would help a child get better. if it’s easy to do and cheap, I may consider. But if someone claims he can cure autism by doing something like this and charges thousands of $$, I would stay away.

Sharing a seminar info with you in case you’re in the Bay Area, especially if you have older children. FCSN SOUTH BAY Free Seminar Topic: “Learn Options to Custom Design Support Services for Our Special Needs Loved Ones”

Speaker: David Grady, M.A., State Council on Developmental Disabilities

Date/Time: Apr. 18, Saturday, 4:30-6:20pm
Place: Westhope Presbyterian Church, 12850 Saratoga Ave., Saratoga, CA 95070
Cost of Seminar: FREE
Children Classes and Dinner : ONLY available for registered South Bay Regular Family Support Gathering families (not available for walk-ins)

Self-Determination will soon be a reality in California. The new law, SB 468, has the potential to dramatically alter service delivery for people & their families and significantly impact their quality of life. This presentation will provide an overview of the law, with real-world examples. It will focus on the basics, assuming most people have only a vague understanding of the new law’s requirements and potential impact.

About the Speaker:
David Grady, M.A.
Mr. David Grady is the executive director at State Council on Developmental Disability, Area Board 7, San Francisco Bay Area Government Administration, which supports and advocates for the special needs community of 4 counties, Santa Clara, San Benito, San Cruz, and Monterey.

seminar is free. There are seminars in either Fremont or Saratoga every other week during school year, ending at the end of May. Next week’s will be about insurance coverage of autism issues. It’ll be in Fremont at the FCSN Center. This should be of great interest to many of you. Speakers Kristen Jacobson and Feda Almati are seasoned advocates. Their efforts have helped CA state legislature to pass insurance mandate for autism coverage, with some exceptions unfortunately.

@张钰鹏 北京可莘爸爸 don’t treat me as an expert. I’ve been on this road much longer than probably all of you. So I learned over time and also have historical perspective. But by no means I’m an expert.

I recall vaguely someone asking me about vaccines a few days ago. Sorry I’ve been too busy and also sick with a bad cough to spend much time here. Here’s my own impression on vaccines.

There are two possible problems with vaccines (theory, not proven). One is the direct toxicity of Thimerosol, a preservative containing mercury used to prevent contamination of vaccines. The other is the aberrant immune response of some children, causing one’s own immune response to attack his/her nervous system and causing neurologic problems. Many studies have been conducted on these. So far essentially none has found vaccine to cause increases in autism. Around year 2000, Thimerasol was removed from children’s vaccines (except some flu vaccines). Autism rate continued to increase after that, suggesting Thimerasol probably does not play a role in causing autism.

All that being said, you may recall the generally accepted concept of autism being just a “syndrome” (group of symptoms) and likely has many causes. So it may be possible that, if a study sample isn’t large enough that each of the many causes had many cases represented in the study group, some differences won’t show up as statistically significant if the sample size is too small. For example, if 100 children were in a study and there’s 10 different cause equally represented in the 100. An increase of 20-30% in that 10 kids may not show up as statistically significant in the larger 100 total population. So it won’t be detected. So if vaccines is causing 2% of autism cases, it will require an extremely large total sample to have enough of these cases. Even then, when divided into the large sample size, it will show up as a small difference only. Hope this makes sense.

So my “feeling” (not scientific at all) is that maybe in a very small number of cases vaccines played a small role (still need to have some predisposition, either in conjunction with other illnesses, toxic exposure, or genetics) in developing autism.

So what should we do. I can share with you what I did, but again without scientific evidence, just my gut feeling.

Since an immature brain is more likely to be damaged by toxins or an immunologic attack, just like a baby is more vulnerable to many infections, I had my third child (recall my second child is the one with autism) delay some of the vaccines until she was about 3-4 (can’t remember, she’s 20 now). I figured, in the relatively clean environment here in suburban California, her chance of catching stuff is pretty small in a 2 year time span. But I did have her vaccinated because, with international travelers everywhere, the risk of catching something serious is still real. So I feel it’s important to protect her. Vaccination also has very important public health benefits. If a population is, say 80% vaccinated, it’s much harder to transmit some disease when only 2 out of 10 people an infected person meets can get it and pass it further. So instead of 1-10-100-1000-10000, it’s more like 1-2-4-8-16. You can see the reasoning behind this.

Other than the part about studies showing no relationship between vaccines and autism, the rest of the above are my own thoughts based on my general knowledge of medicine, immunology, epidemiology, etc.