作者： 凯波

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.

孩子晚上不容易入睡除了大脑兴奋还可能是melatonin 分泌推迟。特别是青少年会比成人晚一两个小时。制造睡眠环境：暗淡的灯光、柔和的音乐、泡脚、按摩、打坐都会有帮助，要根据自己的情况选。另外就是睡觉前30分钟吃3mg的melatonin；如果看书，尽量看纸质的书，不要看电子的。我女儿从小就是晚上不容易睡，早上醒不来的。Melatonin对她入睡起了很大的作用。青少年的身体代谢melatonin 的速度比成人慢，他们早上还会有melatonin 在大脑中，因此不容易醒，醒来了也感觉情绪不好，没睡够。提前至少半个小时叫是个好办法，醒一下睡一下，慢慢清醒。到了一定年龄应该自己控制起床时间。我也有过一段时间的挣扎。她12岁上七年级了还是不愿意醒，叫她她还发脾气。我就准备采取让她迟到的方法。但还是有个几天的过程，前提是她自己并不想迟到。第一天她的闹钟响了，她不醒，我叫了她，告诉她这是第一次，我只会叫三次，之后就不会叫了，她第三次就真的起来了；第二天，她的闹钟还是叫不醒她，我说我会叫两次，之后就不叫了，她第二次就自己起来了；第三天，我又去叫她，而且说是最后一次，她也就起来了；第四天我期望她自己起来，但她就是不能被闹钟叫醒，我等到差10分钟校车要走了才叫她，说如果赶不上校车她要么自己走到学校（1.7英里），要么不上学了。她以最快的速度收拾完冲去坐校车，早饭也没来得及吃。第五天，她自己设了两个闹钟，都放在离床头较远，必须起来才够得着的地方。她自己把闹钟设置在出门前一个小时前叫她起床，吃完早饭她还会练20分钟左右的小提琴。从此以后，我就很少叫她起床了。周一是最难起床的，特别是如果周日有活动，睡得晚了，因此，偶尔我也会要叫她一下。她最近在iPhone上买了一个$1的App: sleep cycle，帮她调解睡眠周期，起床时还测她的心跳，告诉她她的睡眠质量，闹钟的声音柔和，但却能闹醒她！

关于副作用：
Melatonin 是帮助睡眠的药中副作用最小的，人体本身就分泌它。但每个人不一样，如果用，还是要观察孩子的反应，极少数人会更亢奋，就像有的婴儿和儿童在睡前要大哭大闹才能睡一样。有的孩子睡眠周期调节好了也可以停用。不会有withdraw或上瘾的现象。
Melatonin 的剂量要因人而异，小的孩子1mg可能就够了。为了准确，可以用液体的。Natrol牌子的melatonin 有液体的。

关于sleep cycle这个App：
它可以program从什么时候开始响，最后几点把你叫醒，可以是音乐也可以是铃声。女儿放了几段音乐给我，还以为是帮助睡觉的，但她能醒来。

关于网络：
我家孩子自控能力比较强，我们不限制他们的网络使用。儿子一直是不用操心，女儿有过一段挣扎，但现在好了。如果你培养对孩子的信任，他们最终不会让你失望；如果你总认为他们不可信，总想管着，放不开，他们不会相信自己能管住自己，也就不会向那个方向努力。当然这种培养是相当有挑战性的。

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欢迎鲁一思！她4岁提前入学后发展成选择性缄默，她母亲是中学老师，而且她小学1-4年都有一个非常好的老师做班主任，在各方面的帮助和支持下，她逐渐从焦虑中走出来。她也可以分享她的成长经历，对有SM孩子的家长们会是很好的启发。

我是鲁一思，很高兴通过雷春加入群! 我从一年级到四年级选择性缄默一度比较严重，是通过老师和我妈妈的不断鼓励+参加多种课余活动才慢慢走出来，虽然在初中和高中时也有一定的反复情况，但最终还是越来越好!

因目前在从事一些中文教学活动时，发现有一些选择性缄默的孩子，我非常能够理解他们并希望能够通过我的努力帮助他们改善! 也希望通过这个群和大家交流，更多帮到孩子们!

我个人觉得每个孩子得选择性缄默的原因各有不同，最重要的是家长要理解并找出那个原因，然后帮助孩子做心理建设，并寻求一些科学的方法帮助孩子慢慢走出焦虑和缄默。

我当时的表现是很少跟班上同学说话，上课无法回答问题(虽然知道问题答案)，有时候祖父母到学校来看我我也不愿与他们说话。

有些孩子只是内向不到缄默的程度，多鼓励他们参加活动和大家交流就行。

分享点我的心路历程，我小时候和大家口中的孩子很像，宁可自己难受或凑合都不愿意张口问人。如果我父母强迫我去我会更紧张和害怕，直到默默流泪心里想干嘛要逼我但还是默默一句不讲。

后来我妈妈看了一些心理方面的书籍，开始不用逼而是尝试用引导的方式，举个小例子，比如买冰淇淋，如果有其他小朋友在买我妈就会在旁边看似无意的说:哇，你看那么多小朋友在买，一定很好吃，咱们也去买! 到了真买的时候开始我妈妈只是让我完成付钱和说要什么口味这一个动作，然后每次买完我妈就会再给我做心理建设说你看自己说了也没什么吧，自己买了来吃很高兴吧，反正就是尽量让我觉得得这不是什么大事而且自己买很愉快，，几次下来我自己慢慢发现也觉得说了也挺好。

总体来说，一方面我有我自己的世界并且我自己觉得呆在自己世界挺好的不太愿和别人分享，另一方面我太在意别人的想法怕张口受到嘲笑，所以我的父母一直在努力让我在不自觉的情况下感受到分享的愉悦和it’s not a big deal!

我记得当时如果我能明显感觉到这是我爸妈在锻炼我或者逼我说话，我就会很抗拒，但如果是我在不觉察的情况下完成了，返回头想我自己会体会到分享的愉悦。

我父母还让我参加了很多文体的活动，但每次去之前都非常困难，因为我比一般小孩“难说话”，哭个鼻子不愿意去什么的很正常，都要做好长时间心理建设。不过我记得我妈妈的带入感很强，比如去画画前我妈会表现出自己有非常大的兴趣，讲她小时候就梦想当个画家还有看到什么都能画出来会很神气之类，我在家完成画画作业的时候她有时候也会跟我一起画并和我分享怎么画之类，后来还邀请我班上的小朋友到我家一起画画。

我心理转变过程是非常漫长的过程，感谢我父母那么有耐心，从来都是循序渐进不逼迫我。

其实我并不觉得如果家长不关注和改变缄默的孩子就一定会更加不好，我觉得也许时间长了我自己慢慢长大也会慢慢变好，但是我后来很感谢我父母在早期就帮助我打开世界，这让我自己更加快乐的成长和发展。

我4岁上的小学，从那时就开始有类似症状，一直延续到五六年级才有比较明显的好转。

希望我的分享你能够帮助大家了解“我们”的心理从而更好的帮助孩子们。

我觉得我父母的方法中有一点让当时的我比较容易接受，就是他们一直都表现得很随意很自然，我在压力较小的情况下是容易被带入被感染的，虽然后来他们告诉我他们心里是很“刻意”的。

分寸确实不好拿捏 不是每次都能拿捏好 虽然我妈妈已经很注意但有时候也会over 我六岁生日时她好心为了弄了个party 却在吃蛋糕的时候因为想让我和朋友疯玩一起就带头把蛋糕抹在我脸上结果是我当场大哭。

所以我觉得这个分寸还是要不断尝试才能知道，每个孩子的情况和心理底线都不一样，还是父母最了解，要慢慢摸索。
她当时觉得我的状态已经很好，和同学一起很开心，就想让我更进一步，结果太着急没有考虑我还是个缄默的小孩啊。

不过我觉得所有努力都是好的，你会更了解孩子，你这么用心孩子一定会越来越好，加油。

我小时候好长时间都适应不了，每次去个要跟大家交流的活动都跟上刑一样难受。
我现在仍然算是个内向的人，虽然不是那种会特别主动和别人交流的人，但工作上的社交和朋友的相处都没有问题。
举一个例子，工作上我给两千多人在大礼堂做过培训，我主讲，大家反应还不错。
从我自己的心理来讲我自己在后来的学习生活和工作中，每当遇到压力又不愿意表达或讲话时我会自己给自己做心理建设，就像小时候父母帮我做的一样，类似是一种惯性，这也是为什么像之前一位朋友在群里说的那样，对于选择性缄默父母较早引导会比较好。

而且这是一种自然而然的过程，当我越来越发现分享的快乐和，越来越长大心理承受能力更强时，我就越来越会去表达和分享，这种需要心理建设的机会也就会越来越少。

我在国内读的本科和硕士，因为感兴趣在大学选了几门心理选修课，记得当时那个教授说讲这个词来源于孙中山的《建国方略》主要是说要攻破人们心理上的大敌把思想认知问题作为革命的首位，后来一些心理学家就用这个词表示用说服心理暗示等方式帮助解决心理问题的认知过程。
我也只是希望通过我的经历给大家些启发，每个孩子都是独特的。

跟大家说明下，我知道的心理知识都是些皮毛，心理学专业知识还是要求教育于专业医生和专家!

另外，每个孩子都是独特的，我的经历未必都适用，还需要听专家的意见和父母自己总结适合的方式。