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
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.
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.