My Parental Heroes

Today I was interviewing Sridhar Vembu, CEO of Zoho. They have a really cool suite of services you can use to collaborate with your coworkers. I am enjoying using several of their applications and Sridhar and Raju Vegesna (he writes Zoho’s blog) showed me a bunch of stuff and think they have some really interesting services that are going to change the way we work. But more on that when I get the video up.

During the interview, though, I asked Sridhar if he worries about Microsoft or Google crushing his 600-employee business. He said he doesn’t worry about such things cause his business has been around for 10 years and he says he’ll always find a way to compete. But in his eyes I saw something that most CEOs didn’t have. I’m not sure how to describe it, but I’d say it’s a deep confidence along with lack of fear that was coming from somewhere I didn’t understand. I didn’t know how to pull it out of him on tape, but after the camera was turned off they invited me to Peet’s for coffee and we started talking about our kids. I’m not even sure how the conversation turned that direction, but Sridhar told me his son was autistic and that turned the conversation in a whole new direction.

Maryam’s best friend from high school has an autistic child and I’ve spent some time with them so know the hell they go through. The parents, that is. Maryam’s friend’s kid is five. He doesn’t talk. He is hyper active, but doesn’t have conversations with you like normal kids do. Barely even recognizes that someone new is in the room. Other kids will at least look at you when you come in the room. His parents cry regularly and are different people than when I first met them. Somber. Older. Exhausted.

And it just gets worse from there. If you’ve never met a heavily autistic child you have no idea of the hell these parents are going through. They don’t have social ability to try to please you, which Sridhar told me is an important component in learning ability. They also frequently act out, or do very strange/embarrassing things in public. Because they often otherwise look normal these outbursts can prove especially vexing for parents.

Sridhar, over the next hour, gave me a personal tour of his life and the kinds of things they are trying to do to help their child become a functioning member of society (not likely for many of the worst cases).

He told me some things that blew my mind:

1) The cases of children with autism have gone up about 10 times in the past few decades. About 1 out of 100 children will be autistic now. He believes that something in our environment or vaccinations are causing this increase. Most people have never known an autistic child or seen how difficult raising one could be.
2) He personally believes that something about the vaccinations that we’re giving our kids triggers it, or plays a role. He understands that this is a controversial belief, but he says he noticed a major regression after his son had three vaccinations in one day.
3) Some kids do see improvement. He’s working with doctors around the world and said he’s seen a huge improvement in his son’s case with changes in diet and other treatments.
4) He says the Internet is a lifesaver for parents with autistic kids. Google’s result set for “Autism.” He told me that lots of families keep in touch with each other over YouTube (search for Autism, but be prepared to cry) and that he believes that information shared over the Internet is going to find what is causing this and also help in its cure. He says he and his wife participate in a Yahoo group on the topic that gets hundreds of messages a day.
5) The kids with the worst afflictions will cost millions of dollars each to school and then house over their lifetimes (in school they need almost 1:1 instruction) and many autistic kids will never be able to survive in regular society, so will need to be housed in homes where there’s a care-giver present.
6) Silicon Valley has a very high rate of autism, Sridhar told me, but he says that could be that Silicon Valley attracts parents with autistic children for two reasons. 1) The rate among educated people is higher. 2) Silicon Valley has the best trained professionals to deal with autistic children.

Anyway, early on in this conversation Sridhar turned to me and said something like “now you understand why I’m not worried about Google or Microsoft when I go home at night” and added that when you face something like this in your personal life that life at work seems pretty easy, even when facing challenges that the rest of us would think are pretty scary.

Sridhar also rattled off a list of CEOs and famous technologists who are raising autistic children and says he moved to Palo Alto because the schools there are especially good at working with autistic children.

After watching Maryam’s friend deal with her child I can’t even imagine the difficulties raising a child like this. My hat is off to all those parents who are raising kids like this. You are my heroes. I can’t even begin to understand. Thanks to Sridhar for sharing your story with me. I’m glad I took the time to turn off the camera and get to know you.

223 thoughts on “My Parental Heroes

  1. So he has, in your and others opinion…dysmorphic features. Ok. Fine. He does not have a genetic disorder. If I had the acumen to include a picture of his great great grandfather with the same head and down slanted eyes I would do it…but I’m not that saavy. It doesnt hurt my feelings that you and others believe that….its just not true. Are you saying that after testing him twice the doctors are wrong? He may, in your collective opinion have dysmorphic features but repeated testing (from a lab I believe even you all would agree is reputable) says a genetic issue is not present.

    Baxter’s 5 separate diagnoses came from 3 doctors, 1 school district and the Regional center. All independent from one another. The doctor of which I referred to in the previous post was a geneticist…so no he did not oversee his care. Baxter saw many many doctors to facilitate his healing. He wasn’t just autistic, he was a sick miserable little boy. I could not ignore this misery and just “let him be..” We saw the head of Pediatric GI at another large LA hospitial for his diarrhea running down his legs who said to us, “I’m sorry…most kids on the spectrum just have loose stools.” That was the extent of our help for his egregious GI issues. Changing his diet to gluten and casein free slowed the acidic nasty fungal-filled diarrhea and in two weeks of this change marked his first words again in years. The nurses at his pediatricians office were saying things to me like, “you know mom you have to change his diaper more often..” Referring to the open sores in his diaper area from that aformentioned acidic poop. That was not due to neglect…all I thought about was how sick he was! So…Baxter saw a few DAN! practitioners, a few “traditional western med docs” etc. he had a team of professionals lined to help him. And they did.

    With regards to the testing…Many doctors that I greatly admire and respect utilize this testing. I currently have no reason to believe they are not reputable. Anything you say especially a former disgruntled DAN! doc will not convince me. The diet didnt work for his kid so its quackery? Maybe they didnt do it correctly. The diet is PROFOUND for about 75% of the people that implement it well. Alas, I digress. Let’s just agree to disagree.

    My autism and your autism. Right. but the DSM says nothing of all the medical issues that are comorbid for many many many of our kids. So my point is…maybe your autism doesnt include horrific GI issues. Mine did. And his medical issues that went along with his autism were not quirkiness…they were miserable.
    dyslexic wrote:
    “I know that several of the experts locally (Pas included) will say that one really needs to wait till a child is age six to truly determine if they’re actually ASD.”
    Interesting. Love the names of those professionals to ask a few questions.

  2. Julia:

    It’s not “your autism” or anyone else’s “autism”, it’s the DSM’s and ICD’s “autism”. Also, the Regional Centers have been very helpful in covering more than strict autism diagnoses. We also know that in this town a certain diagnosis can be obtained in order to receive services — as should be. I know that several of the experts locally (Pas included) will say that one really needs to wait till a child is age six to truly determine if they’re actually ASD. I’ve known of many kids who have some kind of diagnosis at three and then lose it by grade school and none of them were chelated.

    But I do have a question: You state that had you done nothing for Baxter’s ill-health then you would’ve been brought up on neglect charges. So, who directed his medical care in that regard — was it the head of the largest Los Angeles hospital or was it a DAN! practitioner?

  3. Julia:

    It’s not “your autism” or anyone else’s “autism”, it’s the DSM’s and ICD’s “autism”. Also, the Regional Centers have been very helpful in covering more than strict autism diagnoses. We also know that in this town a certain diagnosis can be obtained in order to receive services — as should be. I know that several of the experts locally (Pas included) will say that one really needs to wait till a child is age six to truly determine if they’re actually ASD. I’ve known of many kids who have some kind of diagnosis at three and then lose it by grade school and none of them were chelated.

    But I do have a question: You state that had you done nothing for Baxter’s ill-health then you would’ve been brought up on neglect charges. So, who directed his medical care in that regard — was it the head of the largest Los Angeles hospital or was it a DAN! practitioner?

  4. If you look at a DDI lab report it basically says right there that the results mean nothing.

    What happens is that the quack dox give the kid a chelator in order to provoke a high level of metals in the urine (and some chelators actually are tainted with heavy metals… but that’s another topic) and then the cups that DDI uses seem to be contaminated with mercury, since Dr. James Laidler, a real MD and former DAN! official whatever… sent DDI two samples of known mercury free faux urine and got back two lab reports saing that they were both high in mercury, but with two different sets of numbers. I’m sure Dr. Laidler would be glad to answer questions on that. He’s in Oregon. He edits the webpage called
    autism-watch.org
    http://www.autism-watch.org/about/bio2.shtml
    I suggest all those reading this thread check out that biography of Dr. Laidler’s since he was a key member of DAN! and left.

    Anyway, the fine print on the bottom of the DDI labs say that the results are normed to non-provoked levels.. there are even more problems with the way DDI labs sets their norms, but suffice it to say, it’s all a scam but DDI covers their behinds with the fine print that no one seems to read.
    http://www.petitiononline.com/DDITESTS/petition.html
    98 of their customers seem to be pretty upset about this and have pleaded with DDI to change their reports… but NOOOOOO, DDI knows what it’s doing.

    http://autismdiva.blogspot.com/2006/03/prometheus-on-mercurial-laboratories.html

    Note that nearly all the DAN! quax are using the SAME expensive mail order lab and not using perfecting FINE local labs. Hello! Smell like a scam yet?

    No one can say (not even someone with an MD) that any kid has “heavy metal poisoning” based on these quack mail order labs. I can’t say it any plainer than that.

    Julia your kid has the exact appearance of a kid with a genetic disorder. I’m sorry if that hurts your feelings. His face and head are a record of his early development, that’s the truth. It’s possible that there was something that interfered with his development very early in the embryonic stage, it’s possible there was a teratogen that got to him, but I’m sorry that kid’s face is way not normal. He has a ridge down the center of his forehead like I have never seen in another kid, ever, that and his eyes are wide set and downward tilted at the outside edge. Whatever affected his development may also have affected his guts. I don’t know what would be so heinous about admitting that.
    http://www.autismvancouver2007.com/1stlevel/Speaker%20images%5Cjulia_baxter_berle.jpg
    The photo of Baxter that was put in the NYT in the full page add showed his dysmorphology quite plainly. Excuse me for pointing out the painfully obvious, Julia. He’s still cute! OK? He’s a cute boy! He’s also got a dysmorphic face.

  5. If you look at a DDI lab report it basically says right there that the results mean nothing.

    What happens is that the quack dox give the kid a chelator in order to provoke a high level of metals in the urine (and some chelators actually are tainted with heavy metals… but that’s another topic) and then the cups that DDI uses seem to be contaminated with mercury, since Dr. James Laidler, a real MD and former DAN! official whatever… sent DDI two samples of known mercury free faux urine and got back two lab reports saing that they were both high in mercury, but with two different sets of numbers. I’m sure Dr. Laidler would be glad to answer questions on that. He’s in Oregon. He edits the webpage called
    autism-watch.org
    http://www.autism-watch.org/about/bio2.shtml
    I suggest all those reading this thread check out that biography of Dr. Laidler’s since he was a key member of DAN! and left.

    Anyway, the fine print on the bottom of the DDI labs say that the results are normed to non-provoked levels.. there are even more problems with the way DDI labs sets their norms, but suffice it to say, it’s all a scam but DDI covers their behinds with the fine print that no one seems to read.
    http://www.petitiononline.com/DDITESTS/petition.html
    98 of their customers seem to be pretty upset about this and have pleaded with DDI to change their reports… but NOOOOOO, DDI knows what it’s doing.

    http://autismdiva.blogspot.com/2006/03/prometheus-on-mercurial-laboratories.html

    Note that nearly all the DAN! quax are using the SAME expensive mail order lab and not using perfecting FINE local labs. Hello! Smell like a scam yet?

    No one can say (not even someone with an MD) that any kid has “heavy metal poisoning” based on these quack mail order labs. I can’t say it any plainer than that.

    Julia your kid has the exact appearance of a kid with a genetic disorder. I’m sorry if that hurts your feelings. His face and head are a record of his early development, that’s the truth. It’s possible that there was something that interfered with his development very early in the embryonic stage, it’s possible there was a teratogen that got to him, but I’m sorry that kid’s face is way not normal. He has a ridge down the center of his forehead like I have never seen in another kid, ever, that and his eyes are wide set and downward tilted at the outside edge. Whatever affected his development may also have affected his guts. I don’t know what would be so heinous about admitting that.
    http://www.autismvancouver2007.com/1stlevel/Speaker%20images%5Cjulia_baxter_berle.jpg
    The photo of Baxter that was put in the NYT in the full page add showed his dysmorphology quite plainly. Excuse me for pointing out the painfully obvious, Julia. He’s still cute! OK? He’s a cute boy! He’s also got a dysmorphic face.

  6. To
    Diva and others that keep on with the Baxter-has-a-genetic-disorder-baloney:

    The FIRST thing we did with our son was genetic testing. EXTENSIVE genetic testing.

    Baxter was seen by the head of the largest Los Angeles hospital for genentic disorders. Because of my being adopted he had the most extensive panel for countless genentic disorders. We even redid the blood work to ensure nothing was being missed (again due to adoption). The entire panel of doctors concluded he does not have any genetic issues. How many times would you suggest I test his genes to prove you are correct? I know that you all from a million miles away believe him to in fact have a genetic disorder based on his appearance…but your armchair diagnoses mean nothing compared to the multitude of professionals that actually saw, analyzed and tested my child’s blood. You can keep repeating the same mantra of what you THINK is my reality alas you continue to be wrong.
    Repeatedly.
    Youe medical degree is from where?
    Ok fine. YOU don’t find the labs that do heavy metal testing reputable. Your opinion. Your medical degree is from where??? I can name countless doctors (with ACTUAL degrees) that do.

    You can continue to discredit my child’s recovery from autism even though you never actually laid eyes on him in person, spent any time with him, reviewed the years of analysis and countless testing/reports, have any credentials to diagnose…and again you will continue to be wrong.
    Calling me “stupid” for recovering my child with the DAN! protocol is ignorant. I was not scammed nor was my child harmed. If I had done nothing I would have been brought up on neglect charges for his ill health. Stop passing judgment on something of which you know nothing.

    AGAIN (AGAIN!!!!!!!!!!) your “autism” was not my “autism.”

    WAS
    being the operative word.

  7. To
    Diva and others that keep on with the Baxter-has-a-genetic-disorder-baloney:

    The FIRST thing we did with our son was genetic testing. EXTENSIVE genetic testing.

    Baxter was seen by the head of the largest Los Angeles hospital for genentic disorders. Because of my being adopted he had the most extensive panel for countless genentic disorders. We even redid the blood work to ensure nothing was being missed (again due to adoption). The entire panel of doctors concluded he does not have any genetic issues. How many times would you suggest I test his genes to prove you are correct? I know that you all from a million miles away believe him to in fact have a genetic disorder based on his appearance…but your armchair diagnoses mean nothing compared to the multitude of professionals that actually saw, analyzed and tested my child’s blood. You can keep repeating the same mantra of what you THINK is my reality alas you continue to be wrong.
    Repeatedly.
    Youe medical degree is from where?
    Ok fine. YOU don’t find the labs that do heavy metal testing reputable. Your opinion. Your medical degree is from where??? I can name countless doctors (with ACTUAL degrees) that do.

    You can continue to discredit my child’s recovery from autism even though you never actually laid eyes on him in person, spent any time with him, reviewed the years of analysis and countless testing/reports, have any credentials to diagnose…and again you will continue to be wrong.
    Calling me “stupid” for recovering my child with the DAN! protocol is ignorant. I was not scammed nor was my child harmed. If I had done nothing I would have been brought up on neglect charges for his ill health. Stop passing judgment on something of which you know nothing.

    AGAIN (AGAIN!!!!!!!!!!) your “autism” was not my “autism.”

    WAS
    being the operative word.

  8. For perspective:
    JB Handley’s Generation Rescue site is listed as a crank site on Crank.net.
    http://www.crank.net/medicine.html
    It’s also found on the ratbags site http://ratbags.com/rsoles/list04.htm

    If I recall correctly, JB Handley is referring to the report that came out of UCD (not directly from the MIND), in 2002, called the Byrd report said that they didn’t find diangostic substitution, but the conclusions are stated bizarrely in the face of facts that show there had to have been some diagnostic substition or diganostic drift. The rate of MR among autistic kids used to be huge, now about 65% the “new autstics” in the CDDS have no MR at all.

    That means lots of these “tragic cases” have normal or superior IQs and with supports many will go to college and become self-supporting, taxpayers and even get married and have kids. There’s the composition of that tragic
    “tsunami” that Rick Rollens keeps raging about.

    In the book “Unstrange Minds” the author points out that the Byrd report would have received a failing grade in an “intro to epidemiology” course at George Washington U (Dr. Grinker’s University). The paper is pretty well shredded in “Three Reasons not to believe in an autism epidemic.” by Gernsbacher, Dawson and Goldsmith.
    psych.wisc.edu/lang/pdf/Gernsbacher_autism_epidemic.pdf
    available free in pdf form. it was published in a peer reviewed journal which the Byrd report was not (that’s a big problem).

    People need to understand that the MIND Insititute was in line to receive money to get themselves a building (big $$$ coming from the state of California to build it) if they could convince the legislature that California was about to be destroyed by an autism epidemic. They acted in a very self-serving way and promoted a epidemic that HAD NOT OCCURED and I believe that a good number of those who should have known better, did know better.

    They just knew which side their bread was buttered on. Also, the DDS itself is in line to receive more and more funding the more they cry, ‘HELP! WE’RE BEING DESTROYED BY VAST NUMBERS OF INCOMING horrible autistic children.” Never mind that the majority of the new ones coming in were not retarded. The DDS speaks in a way that assures that it will get more and more funding. In California the governor seems like he keeps trying to kill off the poor and handicapped by grossly underfunding everything. No joke.

    It’s politics. Hello! Politics.

    http://autismdiva.blogspot.com/2007/05/epidemic.html
    This one refers to the gross flaws in the Byrd report pointed out by a DDS
    employee look for the bold print about halfway through the blog entry.

    http://autismdiva.blogspot.com/2007/02/only-mad-dogs-and-engrishmen.html

    Without the fake lab reports there wouldn’t be hundreds of parents convinced that their kids are mercury toxic and using sham and sometimes very dangerous chelators on little autistic kids.

    Kerry, who killed Abubakar is a DAN! doctor in good standing
    http://autismdiva.blogspot.com/2006/11/dr-kerrys-drug-of-choice-ugly-history.html

    http://autismdiva.blogspot.com/2006/11/hubris-dr-roy-kerry-and-abubakar.html

    Anyone who takes their kid to a DAN! doctor is taking big chances, in my opinion. If parents “buy into” the stupid mail order labs used extensively by DAN! quacks, they are just plain stupid. You can get the same labs (only they’d be accurate) for less money from local laboratories. It’s a scam Mr. Scoble. It’s a scam. Don’t help the scammers and their victims perpetuate it, please.

  9. For perspective:
    JB Handley’s Generation Rescue site is listed as a crank site on Crank.net.
    http://www.crank.net/medicine.html
    It’s also found on the ratbags site http://ratbags.com/rsoles/list04.htm

    If I recall correctly, JB Handley is referring to the report that came out of UCD (not directly from the MIND), in 2002, called the Byrd report said that they didn’t find diangostic substitution, but the conclusions are stated bizarrely in the face of facts that show there had to have been some diagnostic substition or diganostic drift. The rate of MR among autistic kids used to be huge, now about 65% the “new autstics” in the CDDS have no MR at all.

    That means lots of these “tragic cases” have normal or superior IQs and with supports many will go to college and become self-supporting, taxpayers and even get married and have kids. There’s the composition of that tragic
    “tsunami” that Rick Rollens keeps raging about.

    In the book “Unstrange Minds” the author points out that the Byrd report would have received a failing grade in an “intro to epidemiology” course at George Washington U (Dr. Grinker’s University). The paper is pretty well shredded in “Three Reasons not to believe in an autism epidemic.” by Gernsbacher, Dawson and Goldsmith.
    psych.wisc.edu/lang/pdf/Gernsbacher_autism_epidemic.pdf
    available free in pdf form. it was published in a peer reviewed journal which the Byrd report was not (that’s a big problem).

    People need to understand that the MIND Insititute was in line to receive money to get themselves a building (big $$$ coming from the state of California to build it) if they could convince the legislature that California was about to be destroyed by an autism epidemic. They acted in a very self-serving way and promoted a epidemic that HAD NOT OCCURED and I believe that a good number of those who should have known better, did know better.

    They just knew which side their bread was buttered on. Also, the DDS itself is in line to receive more and more funding the more they cry, ‘HELP! WE’RE BEING DESTROYED BY VAST NUMBERS OF INCOMING horrible autistic children.” Never mind that the majority of the new ones coming in were not retarded. The DDS speaks in a way that assures that it will get more and more funding. In California the governor seems like he keeps trying to kill off the poor and handicapped by grossly underfunding everything. No joke.

    It’s politics. Hello! Politics.

    http://autismdiva.blogspot.com/2007/05/epidemic.html
    This one refers to the gross flaws in the Byrd report pointed out by a DDS
    employee look for the bold print about halfway through the blog entry.

    http://autismdiva.blogspot.com/2007/02/only-mad-dogs-and-engrishmen.html

    Without the fake lab reports there wouldn’t be hundreds of parents convinced that their kids are mercury toxic and using sham and sometimes very dangerous chelators on little autistic kids.

    Kerry, who killed Abubakar is a DAN! doctor in good standing
    http://autismdiva.blogspot.com/2006/11/dr-kerrys-drug-of-choice-ugly-history.html

    http://autismdiva.blogspot.com/2006/11/hubris-dr-roy-kerry-and-abubakar.html

    Anyone who takes their kid to a DAN! doctor is taking big chances, in my opinion. If parents “buy into” the stupid mail order labs used extensively by DAN! quacks, they are just plain stupid. You can get the same labs (only they’d be accurate) for less money from local laboratories. It’s a scam Mr. Scoble. It’s a scam. Don’t help the scammers and their victims perpetuate it, please.

  10. Does Mr. Handley realize that his post makes him look dishonest? In his comment he cites the CDDS as being “recent” and on his webpage he properly references it as being from their 2002 report.

    Five years is a long time in Autism research. During that period there has been a flourish of research supporting the proposition that there has been no epidemic and that the changes have been due to diagnosis redistribution and other factors.

    Of course, without an epidemic, Mr. Handley would have to get a real job.

  11. Does Mr. Handley realize that his post makes him look dishonest? In his comment he cites the CDDS as being “recent” and on his webpage he properly references it as being from their 2002 report.

    Five years is a long time in Autism research. During that period there has been a flourish of research supporting the proposition that there has been no epidemic and that the changes have been due to diagnosis redistribution and other factors.

    Of course, without an epidemic, Mr. Handley would have to get a real job.

  12. Susan, Kev and all others on this blog–

    I brief comment in support of the challange to do what is right for your child. I have a child on the spectrum– he is not able to function in a mainstream classroom, indeed he does not function well in an SDC classroom. So many, by the above definitions, would classify him as severe.

    We have done many things on the DAN protocol and many things recommended by traditional doctors, each time carefully assessing the potential impact (upside and downside) and moving slowly to see effect for our child. WE apply the same criteria for each intervention– do we know three families who have a child like ours who have been helped by this intervention.

    I have discovered that often times the tradtional MD’s know no better than the DAN doctors how something will work for my child. WE tried Tenex to help my child sleep through the night, (bolstered by my knowledge from Susan’s book that it helped her son), and he became very hyper! We quickly concluded that it was not the right thing. It was finally this complete trial and error approach of the psychiatrists (as well as my own knowledge of the medical profession) that made me realize that allopathic doctors have little advantage over the so called “alternative” doctors who openly recommend the same trial and error approach.

    I do not know if my son’s autism is a function of a disease, genetic limitation or some combination thereof. I do know that I can enjoy each day with him and that as we get the interventions right (school, diet and biomedical) he does better, albeit very slowly. WE can accept our children for who they are, and still we can want more; we need to use our common sense, and keep our minds open if we want to help our children.

    Best wisshes to every family with children on the spectrum.

  13. Susan, Kev and all others on this blog–

    I brief comment in support of the challange to do what is right for your child. I have a child on the spectrum– he is not able to function in a mainstream classroom, indeed he does not function well in an SDC classroom. So many, by the above definitions, would classify him as severe.

    We have done many things on the DAN protocol and many things recommended by traditional doctors, each time carefully assessing the potential impact (upside and downside) and moving slowly to see effect for our child. WE apply the same criteria for each intervention– do we know three families who have a child like ours who have been helped by this intervention.

    I have discovered that often times the tradtional MD’s know no better than the DAN doctors how something will work for my child. WE tried Tenex to help my child sleep through the night, (bolstered by my knowledge from Susan’s book that it helped her son), and he became very hyper! We quickly concluded that it was not the right thing. It was finally this complete trial and error approach of the psychiatrists (as well as my own knowledge of the medical profession) that made me realize that allopathic doctors have little advantage over the so called “alternative” doctors who openly recommend the same trial and error approach.

    I do not know if my son’s autism is a function of a disease, genetic limitation or some combination thereof. I do know that I can enjoy each day with him and that as we get the interventions right (school, diet and biomedical) he does better, albeit very slowly. WE can accept our children for who they are, and still we can want more; we need to use our common sense, and keep our minds open if we want to help our children.

    Best wisshes to every family with children on the spectrum.

  14. “Severe cases” are around 20 in 10,000. Last time I checked. If you take the 1950′s or 1960′s definition of autism and filter a population with that definition, you’ll get very few kids. If you apply the hugely expanded definition that takes in kids who used to be considered just dumb, or rude, and now are called (more accurately, for sure) PDD,nos and Asperger’s you’ll get up to 1% of the population in some places.

    Julia Berle’s son has the appearance of having a genetic disorder. She says he was checked for some of them, but it doesn’t change the fact that he has the definite appearance of having a genetic disorder, or the fact that she has slides of the quack laboratory reports that she shares to show that her son was “mercury poisoned”. Based on those lab tests one can say nothing accurate about his “heavy metal” “body burden.” I’m not kidding. DDI labs is famous for it’s bad labs, that’s the one Juila used to “prove” her kid was heavy metal poisoned, and treated him as such.

    http://www.theglobeandmail.com/servlet/story/RTGAM.20070508.wlautism08/BNStory/specialScienceandHealth/home

    The quack labs are mentioned here. Tim Buie is considered a hero by many of the alternative med crowd, even though he’s a straight MD and not a quack. He’s OK by me.

  15. “Severe cases” are around 20 in 10,000. Last time I checked. If you take the 1950′s or 1960′s definition of autism and filter a population with that definition, you’ll get very few kids. If you apply the hugely expanded definition that takes in kids who used to be considered just dumb, or rude, and now are called (more accurately, for sure) PDD,nos and Asperger’s you’ll get up to 1% of the population in some places.

    Julia Berle’s son has the appearance of having a genetic disorder. She says he was checked for some of them, but it doesn’t change the fact that he has the definite appearance of having a genetic disorder, or the fact that she has slides of the quack laboratory reports that she shares to show that her son was “mercury poisoned”. Based on those lab tests one can say nothing accurate about his “heavy metal” “body burden.” I’m not kidding. DDI labs is famous for it’s bad labs, that’s the one Juila used to “prove” her kid was heavy metal poisoned, and treated him as such.

    http://www.theglobeandmail.com/servlet/story/RTGAM.20070508.wlautism08/BNStory/specialScienceandHealth/home

    The quack labs are mentioned here. Tim Buie is considered a hero by many of the alternative med crowd, even though he’s a straight MD and not a quack. He’s OK by me.

  16. My cousin’s son is autistic and i know how difficut their life is. They have literally shut themselves from all of us. They seldom attend functions in our family and visit places on vacations. Really Sad

  17. My cousin’s son is autistic and i know how difficut their life is. They have literally shut themselves from all of us. They seldom attend functions in our family and visit places on vacations. Really Sad

  18. Thanks so much for posting this and creating both the dialogue and the spin off posts that help evangelize an awareness of autism in the blogosphere.

    We have a three year old daughter with Autism. She is termed high functioning, whatever that means. We live in Ontario Canada and are navigating the government processes required to get help so we can adequately provide therapy for our daughter.

    As you can see from the posts Autism is a topic with many perspectives, and not nearly enough data. What I mean by this is:

    – root cause is not established,
    – the spectrum is thought to be a basket or collection of related issues, but what those issues are no one really quite knows
    – parents of children are NOT provided, by anyone, reliable sources of information regarding what Autism is, and what treatments do and do not work
    – studies that look at things like DAN and Vaccine theory are all significantly flawed,
    – Genetic and Epigenetic studies, which may provide root cause analysis and provide linkage for all these subjects, are years away from completion
    – Social services agencies are paralyzed by the suddenly increasing scope of the burden and the lack of consensus on treatments, stranding millions of parents to find their own way, expensively, painfully, and with sometimes tragic results for the children involved.

    There is a desparate need for research money and for therapy money. Here in Ontario I post on my own blog figures regarding the waitlists for social services funding for therapy for Autistic Children. The wait for funding averages 1.5 to 2.5 years from date of acceptance into the program. Once funding is granted the facilities provided, if therapy is government- provided, are not necessarily run well. If you take direct funding you quickly learn about critical shortages of care providers ina ll areas of the value chain.

    I’m copying your post to my blog and to the Geneva Centre for Autism, which is the hub for Autism related issues here in Toronto.

    Oh, and to the guy who wants to do a web 2.0 thing for Autism parents, I’m in. I have ideas. I’ve thought about it a lot. Let’s go.

    /malcolm

  19. Thanks so much for posting this and creating both the dialogue and the spin off posts that help evangelize an awareness of autism in the blogosphere.

    We have a three year old daughter with Autism. She is termed high functioning, whatever that means. We live in Ontario Canada and are navigating the government processes required to get help so we can adequately provide therapy for our daughter.

    As you can see from the posts Autism is a topic with many perspectives, and not nearly enough data. What I mean by this is:

    – root cause is not established,
    – the spectrum is thought to be a basket or collection of related issues, but what those issues are no one really quite knows
    – parents of children are NOT provided, by anyone, reliable sources of information regarding what Autism is, and what treatments do and do not work
    – studies that look at things like DAN and Vaccine theory are all significantly flawed,
    – Genetic and Epigenetic studies, which may provide root cause analysis and provide linkage for all these subjects, are years away from completion
    – Social services agencies are paralyzed by the suddenly increasing scope of the burden and the lack of consensus on treatments, stranding millions of parents to find their own way, expensively, painfully, and with sometimes tragic results for the children involved.

    There is a desparate need for research money and for therapy money. Here in Ontario I post on my own blog figures regarding the waitlists for social services funding for therapy for Autistic Children. The wait for funding averages 1.5 to 2.5 years from date of acceptance into the program. Once funding is granted the facilities provided, if therapy is government- provided, are not necessarily run well. If you take direct funding you quickly learn about critical shortages of care providers ina ll areas of the value chain.

    I’m copying your post to my blog and to the Geneva Centre for Autism, which is the hub for Autism related issues here in Toronto.

    Oh, and to the guy who wants to do a web 2.0 thing for Autism parents, I’m in. I have ideas. I’ve thought about it a lot. Let’s go.

    /malcolm

  20. The problem of Autism is way more widespread. They call it a spectrum and rightly so. There are many highly functioning children who was and never will be evaluated & diagnosed. Yes, severe cases are 1 in 100 but we are missing on a lot more cases. There are so many children with various degrees of deficit in the areas of sensory, learning, behaviour, fine motor skills, sleeping disorders, social skills etc. I think definition of a norm is being shifted. A degree of disability become a norm. In 15-20 years time, when all this children will grow up, we will be living in a different world. It’s a scary thought.

  21. The problem of Autism is way more widespread. They call it a spectrum and rightly so. There are many highly functioning children who was and never will be evaluated & diagnosed. Yes, severe cases are 1 in 100 but we are missing on a lot more cases. There are so many children with various degrees of deficit in the areas of sensory, learning, behaviour, fine motor skills, sleeping disorders, social skills etc. I think definition of a norm is being shifted. A degree of disability become a norm. In 15-20 years time, when all this children will grow up, we will be living in a different world. It’s a scary thought.

  22. Wow.

    Pramila and Sridhar, I both admire and salute the two of you for your gracefulness.

    You are being challenged by a microscopic community that seems to scour the web criticzing anyone who thinks autism should be “cured.”

    For those interested in alternative vaccine schedules, please read here:

    http://www.generationrescue.org/vaccines.html

    To read the published science supporting the position of those of us who believe vaccines have played a role in our children’s autism, read here:

    http://www.generationrescue.org/studies.html

    Here’s what California’s DDS said in a report recently:

    “There is no evidence that a loosening in the diagnostic criteria has contributed to increased number of autism clients…we conclude that some, if not all, of the observed increase represents a true increase in cases of autism in California…a purely genetic basis for autism does not fully explain the increasing autism prevalence. Other theories that attempt to better explain the observed increase in autism cases include environmental exposures to substances such as mercury; viral exposures; autoimmune disorders; and childhood vaccinations.”

    And, here’s what the guy “Kev” said a few years ago when his daughter was first diagnosed and before he decided that there is no cure for autism, it just IS:

    “Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab.

    I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different. There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.

    I’m sure that I’m not the only parent of an autistic child that just doesn’t know what to think anymore. We believe that the 3 in 1 jab Megan had triggered her autism and we also believe that there was mercury used as a suspension fluid in her DTP jab.

    So why exactly is the Thimerasol (the mercury preservative used in the jabs) so bad in the whooping cough vaccine that it warrants removal of the vaccine and yet the Thimerasol in the DTP (and plenty of other) vaccines is not considered an autism causative?

    Maybe I’m missing something here but the evidence for me is mounting that the Gvmt in this country need to urgently investigate mercury based vaccines of all kinds.”

    I like the old Kev better!!

    JB Handley
    Generation Rescue

    Please note: Nasty insulting posts guaranteed to follow!!

  23. Wow.

    Pramila and Sridhar, I both admire and salute the two of you for your gracefulness.

    You are being challenged by a microscopic community that seems to scour the web criticzing anyone who thinks autism should be “cured.”

    For those interested in alternative vaccine schedules, please read here:

    http://www.generationrescue.org/vaccines.html

    To read the published science supporting the position of those of us who believe vaccines have played a role in our children’s autism, read here:

    http://www.generationrescue.org/studies.html

    Here’s what California’s DDS said in a report recently:

    “There is no evidence that a loosening in the diagnostic criteria has contributed to increased number of autism clients…we conclude that some, if not all, of the observed increase represents a true increase in cases of autism in California…a purely genetic basis for autism does not fully explain the increasing autism prevalence. Other theories that attempt to better explain the observed increase in autism cases include environmental exposures to substances such as mercury; viral exposures; autoimmune disorders; and childhood vaccinations.”

    And, here’s what the guy “Kev” said a few years ago when his daughter was first diagnosed and before he decided that there is no cure for autism, it just IS:

    “Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab.

    I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different. There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.

    I’m sure that I’m not the only parent of an autistic child that just doesn’t know what to think anymore. We believe that the 3 in 1 jab Megan had triggered her autism and we also believe that there was mercury used as a suspension fluid in her DTP jab.

    So why exactly is the Thimerasol (the mercury preservative used in the jabs) so bad in the whooping cough vaccine that it warrants removal of the vaccine and yet the Thimerasol in the DTP (and plenty of other) vaccines is not considered an autism causative?

    Maybe I’m missing something here but the evidence for me is mounting that the Gvmt in this country need to urgently investigate mercury based vaccines of all kinds.”

    I like the old Kev better!!

    JB Handley
    Generation Rescue

    Please note: Nasty insulting posts guaranteed to follow!!

  24. Wow! Kevin, Ms. Clark, Orac…Robert you attract all the big names!!!
    Hey gang. nice to see you all again.

    Its always interesting to me that people interpret OTHER’S experiences as their own. If I have a headache do you know how that feels? Is it on the right side or left? Is it throbbing or a dull ache? Is it a full blown migraine that is going to make me sick? How do you know?

    Everyones autism is not the same. You may not like the term “hellish” or anything else previously described but to some, it is. I am grateful that many of you that are affected by autism do not have this feeling but dimishing someone else reality by clouding it with your own is ….can’t think of a non-offensive word here
    My son had 5 separate diagnoses of autism and all have been removed. He is considered 100% neurotypical. We have no affiliation with Scientology though My friend Kev who lives 7,000 miles away and whom I have never met… will try to tell you otherwise. My experience with autism through my son WAS hellish. He screamed and cried all day, never slept and had acidic nasty diarrrhea that ate away at his skin. His life was pure hell. He was miserable. The DAN protocol SAVED my son from that hell. I shudder to think of his life if I had done nothing. Is that EVERYONES experience with autism? Obviously not. But a few people of whom I have never met telling me it never happend doesnt make it any less true.
    It would be nice if we could all respect one anothers experiences and see the positive in what Scoble was trying to say here. I for one heard it and am grateful he blogged it.
    Thanks Scobleizer….
    Baxter’s mom
    http://www.childrenscornerschool.com/video/bax3.wmv

  25. Wow! Kevin, Ms. Clark, Orac…Robert you attract all the big names!!!
    Hey gang. nice to see you all again.

    Its always interesting to me that people interpret OTHER’S experiences as their own. If I have a headache do you know how that feels? Is it on the right side or left? Is it throbbing or a dull ache? Is it a full blown migraine that is going to make me sick? How do you know?

    Everyones autism is not the same. You may not like the term “hellish” or anything else previously described but to some, it is. I am grateful that many of you that are affected by autism do not have this feeling but dimishing someone else reality by clouding it with your own is ….can’t think of a non-offensive word here
    My son had 5 separate diagnoses of autism and all have been removed. He is considered 100% neurotypical. We have no affiliation with Scientology though My friend Kev who lives 7,000 miles away and whom I have never met… will try to tell you otherwise. My experience with autism through my son WAS hellish. He screamed and cried all day, never slept and had acidic nasty diarrrhea that ate away at his skin. His life was pure hell. He was miserable. The DAN protocol SAVED my son from that hell. I shudder to think of his life if I had done nothing. Is that EVERYONES experience with autism? Obviously not. But a few people of whom I have never met telling me it never happend doesnt make it any less true.
    It would be nice if we could all respect one anothers experiences and see the positive in what Scoble was trying to say here. I for one heard it and am grateful he blogged it.
    Thanks Scobleizer….
    Baxter’s mom
    http://www.childrenscornerschool.com/video/bax3.wmv

  26. “As for monk.e.boy, he has to live with himself.”

    That’s confusing… I have to live with myself for suggesting the obvious? What was the point of this post? To raise awareness of autism? Are there actually people out there who thought this information was insightful and new?

    Are you all so removed from reality? Don’t any of you know parents with disabled kids? And how hard it is for them? Is this really news. I hope not.

    Awareness = nothing.
    Help = something.

    1,000 replies and blog posts = nothing.
    $10 for an ice cream = something.
    $50 for a fun day out = something.

    So I have to live with myself.

  27. “As for monk.e.boy, he has to live with himself.”

    That’s confusing… I have to live with myself for suggesting the obvious? What was the point of this post? To raise awareness of autism? Are there actually people out there who thought this information was insightful and new?

    Are you all so removed from reality? Don’t any of you know parents with disabled kids? And how hard it is for them? Is this really news. I hope not.

    Awareness = nothing.
    Help = something.

    1,000 replies and blog posts = nothing.
    $10 for an ice cream = something.
    $50 for a fun day out = something.

    So I have to live with myself.

  28. @ 85. Dr. Kenneth Bock’s book is not specifically about autism, but on his “healing” protocol for the “4-A” disorders.

    @ 86. Regarding “no autism epidemic,” see also the Chronicle of Higher Education (May 11, 2007), for a thoughtful presentation of analyses of the epidemiology.

    On the limitations of the biomedical understanding of autism, I have recorded some of our experiences in regard to these with our son Charlie in this post.

    best wishes from kc

  29. @ 85. Dr. Kenneth Bock’s book is not specifically about autism, but on his “healing” protocol for the “4-A” disorders.

    @ 86. Regarding “no autism epidemic,” see also the Chronicle of Higher Education (May 11, 2007), for a thoughtful presentation of analyses of the epidemiology.

    On the limitations of the biomedical understanding of autism, I have recorded some of our experiences in regard to these with our son Charlie in this post.

    best wishes from kc

  30. LOL
    As you can see, there are lots of passionate heros out there.

    I agree with Mr. Vembu’s perspective. We’re lucky to have these special kids because they constantly remind us of what’s really important. We may have our ‘hell-ish’ moments but I’m betting we also get more heavenly ones than most other folks get! Nah-nah-nah-nah-nah-nah!

  31. LOL
    As you can see, there are lots of passionate heros out there.

    I agree with Mr. Vembu’s perspective. We’re lucky to have these special kids because they constantly remind us of what’s really important. We may have our ‘hell-ish’ moments but I’m betting we also get more heavenly ones than most other folks get! Nah-nah-nah-nah-nah-nah!

  32. As i mentioned before, everybody makes their own decision as to whether to treat or not to treat. Our son has real medical problems and treating them do result in improvement of autism symptoms.

    For example, treatment of recurrent oral herpes (prescribed by a doctor who did not know about his autism) resulted in sudden improvements: focus, attention, school performance overall.

    Yes he is also a child who started out with abnormal urinary porphyrins, which are since much better. (I do run several of these tests on myself and do not see the same problems). It is the same issue with oxidative stress.

    In any case, for those of you who may be interested, the upcoming Autism One conference in Chicago (has a good mix of educational, biomedical and alternative treatments) is a good place to learn about recent advances.

    Thank you for the positive comments on what we could do to help from a technology point of view. That is a good thought.

    Thank you Robert, for this discussion, my last post in this as well,

    Pramila

  33. As i mentioned before, everybody makes their own decision as to whether to treat or not to treat. Our son has real medical problems and treating them do result in improvement of autism symptoms.

    For example, treatment of recurrent oral herpes (prescribed by a doctor who did not know about his autism) resulted in sudden improvements: focus, attention, school performance overall.

    Yes he is also a child who started out with abnormal urinary porphyrins, which are since much better. (I do run several of these tests on myself and do not see the same problems). It is the same issue with oxidative stress.

    In any case, for those of you who may be interested, the upcoming Autism One conference in Chicago (has a good mix of educational, biomedical and alternative treatments) is a good place to learn about recent advances.

    Thank you for the positive comments on what we could do to help from a technology point of view. That is a good thought.

    Thank you Robert, for this discussion, my last post in this as well,

    Pramila

  34. Sridhar Vembu,

    Have you ever sent your child’s urine or other biological samples to the laboratory called Doctor’s Data Inc? Have you made decisions about what to dose your child with based on that information? That is if you don’t mind telling me. If you haven’t you are an unusual DAN! parent.

    Doctor’s Data Inc. is a patently bad source of information. I doubt there is an analogous group involved in cell telephone technology. If there is, those people need to be arrested and put in jail. Do you understand what I am saying? This is how bad some of these entities are that are part and parcel of DAN!

    As far as I know, no DAN! doctor has “recovered” his child, though Bradstreet, after years of supposedly treating his own son (of cheating parents with faux secretin and encouraging htem to bill their insurance companies for “heavy metal poiisoning” for unneeded treatements based on the lying lab results mentioned earlier) finally claimed his kid was “coming back” to him.

    The parents who show video of unrecovered teens and pre-teens have kids who look a whole lot like the kids who other parents are claiming are “recovered”.

    Nearly everything associated wtih DAN! and the false epidemic is a scam, guys. A hoax. If your doctor got your kid on the GFCF diet and he benefited from that, well, that’s great. But the GFCF diet also has lots of placebo by proxy effects as the parents are putting great amounts of effort into making it work and so put great amounts of expectation and hope into their child (that they might have given up on).

    Scientific American MIND has an article in the current issue about how there was no epidemic. NO epidemic, no need to blame vaccines or anything else “new”.

  35. Sridhar Vembu,

    Have you ever sent your child’s urine or other biological samples to the laboratory called Doctor’s Data Inc? Have you made decisions about what to dose your child with based on that information? That is if you don’t mind telling me. If you haven’t you are an unusual DAN! parent.

    Doctor’s Data Inc. is a patently bad source of information. I doubt there is an analogous group involved in cell telephone technology. If there is, those people need to be arrested and put in jail. Do you understand what I am saying? This is how bad some of these entities are that are part and parcel of DAN!

    As far as I know, no DAN! doctor has “recovered” his child, though Bradstreet, after years of supposedly treating his own son (of cheating parents with faux secretin and encouraging htem to bill their insurance companies for “heavy metal poiisoning” for unneeded treatements based on the lying lab results mentioned earlier) finally claimed his kid was “coming back” to him.

    The parents who show video of unrecovered teens and pre-teens have kids who look a whole lot like the kids who other parents are claiming are “recovered”.

    Nearly everything associated wtih DAN! and the false epidemic is a scam, guys. A hoax. If your doctor got your kid on the GFCF diet and he benefited from that, well, that’s great. But the GFCF diet also has lots of placebo by proxy effects as the parents are putting great amounts of effort into making it work and so put great amounts of expectation and hope into their child (that they might have given up on).

    Scientific American MIND has an article in the current issue about how there was no epidemic. NO epidemic, no need to blame vaccines or anything else “new”.

  36. Get medical tests for the child to find out whether vaccine injury is present. Skip the online posturing and start the healing.

    I know a boy with vaccine-strain measles in lesions lining his intestinal mucosa. I know children whose urinary porphyrin profiles show the biomarkers of mercury toxicity. I know children whose lithium level is almost zero.

    I know children whose health, behavior and mood have improved drastically after receiving nutritional supplements to treat deficiencies. Look into testing and treatment. Read “Children with Starving Brains” by Dr. Jacquelyn McCandless.

    Don’t be be swayed by others’ financial and political agendas; look at the studies on mercury toxicity and gut permeability (Discover, April 2007), look at children’s lab work. Check out the new book by Dr. Ken Bock, or the Autism Research Institute website.

    Read the reports to the Vaccine Adverse Events Reporting System. Ask why the Vaccine Safety Datalink report by Verstraeten has gone missing in time for the Federal Autism Omnibus Proceedings.

    Don’t confuse vaccine investigation with being anti-vaccine… researching your shots as well as you research buying a car doesn’t make you “anti-car.”

    What matters is safe, prompt testing and treatment for children who are suffering with chronic diarrhea and/or constipation, allergies, asthma, head banging, mood swings, hyperactivity, etc. ad nauseam. Every child deserves the right to a healthy, happy life.

  37. Get medical tests for the child to find out whether vaccine injury is present. Skip the online posturing and start the healing.

    I know a boy with vaccine-strain measles in lesions lining his intestinal mucosa. I know children whose urinary porphyrin profiles show the biomarkers of mercury toxicity. I know children whose lithium level is almost zero.

    I know children whose health, behavior and mood have improved drastically after receiving nutritional supplements to treat deficiencies. Look into testing and treatment. Read “Children with Starving Brains” by Dr. Jacquelyn McCandless.

    Don’t be be swayed by others’ financial and political agendas; look at the studies on mercury toxicity and gut permeability (Discover, April 2007), look at children’s lab work. Check out the new book by Dr. Ken Bock, or the Autism Research Institute website.

    Read the reports to the Vaccine Adverse Events Reporting System. Ask why the Vaccine Safety Datalink report by Verstraeten has gone missing in time for the Federal Autism Omnibus Proceedings.

    Don’t confuse vaccine investigation with being anti-vaccine… researching your shots as well as you research buying a car doesn’t make you “anti-car.”

    What matters is safe, prompt testing and treatment for children who are suffering with chronic diarrhea and/or constipation, allergies, asthma, head banging, mood swings, hyperactivity, etc. ad nauseam. Every child deserves the right to a healthy, happy life.

  38. Ms. Clark,
    I respect your view point. Again, all we can go by is our own observation and experience. The science here is still in a fairly unsettled state. So I will *not* make any blanket statements (i.e about what works for other autistic kids), but I will say that our kid regressed fairly late (his diagnosis itself happened just around 5 years, and that diagnosis had used phrases like “higher functioning” – yet after that came a fairly serious regression, which we would attribute to the last minute catch-up shots we did, to get the school to admit him).

    Our experience with DAN was *not* the way you have outlined. We researched a lot, spoke to parents, met parents, and at no point were we made any promises. In fact, most DAN doctors will tell you that *even* with all this, there are many cases where the kids haven’t made much progress. Heck, one of the doctors told us, in our very first meeting, that their own kid didn’t make much progress. So much for marketing.

    What we tried in the beginning was something simple – remove wheat and milk from our kid’s diet (which is perfectly harmless to try). That had one specific, remarkable result: he got potty trained within a couple of weeks of that (which was well after his 6th birthday).

    Since then, he has made steady (if at times slow) progress. Could we be on a completely wrong track? That possibility always exists, but at this point, we have a fair degree of conviction in what we are doing. Your mileage may vary, of course. Each person has to evaluate the claims and counter-claims and come to their own conclusion.

    Let me finish my last post on this thread with an anecdote from my professional career. In digital cellular, there are two prevailing technologies GSM and CDMA, with today CDMA being accepted as the superior technology (GSM is also moving to a flavor of CDMA in the next generation). I worked for the company behind CDMA(Qualcomm), as an engineer in the mid 90s, and worked on aspects of CDMA technology.

    At that time (early to mid 90′s) a famous technology journalist said “CDMA will never work, it is against the laws of Physics”. There was swirling controversy around CDMA. Qualcomm was accused of peddling snake oil. I vividly remember being an engineer in Qualcomm, when the press was carrying a lot of stories on this controversy (there wasn’t much of an internet then). It felt bad to be talked about in those terms, yet working on the technology, we knew it was solid.

    Fast foward 12 years, today, CDMA is widely accepted as the superior technology in cellular.

    So for those of you who think of science in black-and-white (truth or falsehood) terms, realize that it is a messy, rough (and very human) process for anything new to get accepted. Truth doesn’t make a glorious appearance on the stage. It makes tentative, halting steps towards eventual acceptance, with a lot of backsliding along the way.

    So all I ask of the critics: keep an open mind.

    Sridhar

  39. Ms. Clark,
    I respect your view point. Again, all we can go by is our own observation and experience. The science here is still in a fairly unsettled state. So I will *not* make any blanket statements (i.e about what works for other autistic kids), but I will say that our kid regressed fairly late (his diagnosis itself happened just around 5 years, and that diagnosis had used phrases like “higher functioning” – yet after that came a fairly serious regression, which we would attribute to the last minute catch-up shots we did, to get the school to admit him).

    Our experience with DAN was *not* the way you have outlined. We researched a lot, spoke to parents, met parents, and at no point were we made any promises. In fact, most DAN doctors will tell you that *even* with all this, there are many cases where the kids haven’t made much progress. Heck, one of the doctors told us, in our very first meeting, that their own kid didn’t make much progress. So much for marketing.

    What we tried in the beginning was something simple – remove wheat and milk from our kid’s diet (which is perfectly harmless to try). That had one specific, remarkable result: he got potty trained within a couple of weeks of that (which was well after his 6th birthday).

    Since then, he has made steady (if at times slow) progress. Could we be on a completely wrong track? That possibility always exists, but at this point, we have a fair degree of conviction in what we are doing. Your mileage may vary, of course. Each person has to evaluate the claims and counter-claims and come to their own conclusion.

    Let me finish my last post on this thread with an anecdote from my professional career. In digital cellular, there are two prevailing technologies GSM and CDMA, with today CDMA being accepted as the superior technology (GSM is also moving to a flavor of CDMA in the next generation). I worked for the company behind CDMA(Qualcomm), as an engineer in the mid 90s, and worked on aspects of CDMA technology.

    At that time (early to mid 90′s) a famous technology journalist said “CDMA will never work, it is against the laws of Physics”. There was swirling controversy around CDMA. Qualcomm was accused of peddling snake oil. I vividly remember being an engineer in Qualcomm, when the press was carrying a lot of stories on this controversy (there wasn’t much of an internet then). It felt bad to be talked about in those terms, yet working on the technology, we knew it was solid.

    Fast foward 12 years, today, CDMA is widely accepted as the superior technology in cellular.

    So for those of you who think of science in black-and-white (truth or falsehood) terms, realize that it is a messy, rough (and very human) process for anything new to get accepted. Truth doesn’t make a glorious appearance on the stage. It makes tentative, halting steps towards eventual acceptance, with a lot of backsliding along the way.

    So all I ask of the critics: keep an open mind.

    Sridhar

  40. Thank you so much Robert, Sridar and Pramila.
    It’s great to see an honest, sensitive post on this topic. Some of us live with the great difficulties posed by our children’s severe illnesses, 24/7.

    It is most unfortunate however that there is so much mis-information and simply false information promoted by some posters, some of whom have the audacity to claim to speak for people such as my daughter. Obviously there are some very vocal people who do not have the same problem as the children I am referring to, such as my own.

    There are so many examples it would be inappropriate for me to list them all here, with appropriate references. So here are just a few:

    (1) Anyone who thinks thimerosal is safe should read the MSDS (material safety data sheet) for it. You can find it. There is tons of research showing how dangerous it is, and *none* showing it is safe. It also has not been removed from all the vaccines (and RhoGam shots) that are of interest, see e.g. flu vaccine.

    (2) If you think Wakefield’s work was discredited, please read the actual Lancet 1998 paper, and read the retraction later published. What was “retracted” was something that was not in the paper in the first place. While Wakefield has been vilified, nobody has been able to show that what he actually did write was not correct. His work has been replicated. Even his original 1998 paper examined more subjects than the original Kanner work that defined autism.

    (3) It is logically incorrect to state that if there is no epidemic there cannot be an environmental cause. It is correct however that if there is a real increase in the incidence of a problem it cannot be purely inherited (a special case of being genetic). That is why so much effort gets expended trying to convince everyone that there must not be an epidemic – it’s the only way to blame inherited genetics.

    (4) For those who claim there is no real increase in autism (Autistic Disorder in particular, to avoid confusion with Aspergers and the unofficial high functioning autism), to support such a position you would have to find the many tens or hundreds of thousands of adults who would have to be living now who have Autistic Disorder. This appears to be impossible.

    (5) The two famous recent articles about large scale genetic studies and autism did *not* a heritable genetic explanation, despite numerous public false statements to to the contrary. Please read the papers yourselves.

    It’s essential to recognize the Autistic Disorder and the other disorders with formal criteria (PDD-NOS, Aspergers, etc.) are *defined* by psychologically measurable behavioral characteristics. As such, those labels don’t say anything at all about what causes those characteristics. There could be any number of causes. Some people may have inherited them, some may be the result of spontaneous genetic copy number variations (see previous paragraph), some may be the result of heavy metal and/or pesticide or PCB poisoning, something else, or any combination.

    Finally – the New York Time’s headline last year that it is Parents vs. Science is simply false. The vast majority of the parents I know want real science work to be done. Unfortunately good science on the neurodegeneration that afflicts so many is sparse, due to severe political considerations and associated lack of funding, while most of the money that is being spent is going towards continuing to search for the elusive autism gene.

  41. Thank you so much Robert, Sridar and Pramila.
    It’s great to see an honest, sensitive post on this topic. Some of us live with the great difficulties posed by our children’s severe illnesses, 24/7.

    It is most unfortunate however that there is so much mis-information and simply false information promoted by some posters, some of whom have the audacity to claim to speak for people such as my daughter. Obviously there are some very vocal people who do not have the same problem as the children I am referring to, such as my own.

    There are so many examples it would be inappropriate for me to list them all here, with appropriate references. So here are just a few:

    (1) Anyone who thinks thimerosal is safe should read the MSDS (material safety data sheet) for it. You can find it. There is tons of research showing how dangerous it is, and *none* showing it is safe. It also has not been removed from all the vaccines (and RhoGam shots) that are of interest, see e.g. flu vaccine.

    (2) If you think Wakefield’s work was discredited, please read the actual Lancet 1998 paper, and read the retraction later published. What was “retracted” was something that was not in the paper in the first place. While Wakefield has been vilified, nobody has been able to show that what he actually did write was not correct. His work has been replicated. Even his original 1998 paper examined more subjects than the original Kanner work that defined autism.

    (3) It is logically incorrect to state that if there is no epidemic there cannot be an environmental cause. It is correct however that if there is a real increase in the incidence of a problem it cannot be purely inherited (a special case of being genetic). That is why so much effort gets expended trying to convince everyone that there must not be an epidemic – it’s the only way to blame inherited genetics.

    (4) For those who claim there is no real increase in autism (Autistic Disorder in particular, to avoid confusion with Aspergers and the unofficial high functioning autism), to support such a position you would have to find the many tens or hundreds of thousands of adults who would have to be living now who have Autistic Disorder. This appears to be impossible.

    (5) The two famous recent articles about large scale genetic studies and autism did *not* a heritable genetic explanation, despite numerous public false statements to to the contrary. Please read the papers yourselves.

    It’s essential to recognize the Autistic Disorder and the other disorders with formal criteria (PDD-NOS, Aspergers, etc.) are *defined* by psychologically measurable behavioral characteristics. As such, those labels don’t say anything at all about what causes those characteristics. There could be any number of causes. Some people may have inherited them, some may be the result of spontaneous genetic copy number variations (see previous paragraph), some may be the result of heavy metal and/or pesticide or PCB poisoning, something else, or any combination.

    Finally – the New York Time’s headline last year that it is Parents vs. Science is simply false. The vast majority of the parents I know want real science work to be done. Unfortunately good science on the neurodegeneration that afflicts so many is sparse, due to severe political considerations and associated lack of funding, while most of the money that is being spent is going towards continuing to search for the elusive autism gene.

  42. Great post! The more we talk about autism the more we can educate the public. A good friend of ours son also had the same experience after his shots. I recently learned about zoho.com and am blown away how great it is. I will be recommending to everyone I know. My prayers are with Scridhar Vembu and his beautiful wife and their special child.

  43. Great post! The more we talk about autism the more we can educate the public. A good friend of ours son also had the same experience after his shots. I recently learned about zoho.com and am blown away how great it is. I will be recommending to everyone I know. My prayers are with Scridhar Vembu and his beautiful wife and their special child.

  44. Hi! I’m a big fan from the Philippines. I would like to repost your article on autism in my blog. I have a couple of posts on autism, a subject I hold close to my heart as I served Elsie Gaches, home of our mentally challenged brothers and sisters, sons and daughters. The links are at http://anitokid.blogspot.com/2007/04/sonia-roco-i-kid-you-not.html and http://anitokid.blogspot.com/2007/04/april-is-autism-awareness-month.html.
    Hoping for your kind consideration regarding this matter. More power! Mabuhay!

    Leslie Mapugay aka AnitoKid

  45. Hi! I’m a big fan from the Philippines. I would like to repost your article on autism in my blog. I have a couple of posts on autism, a subject I hold close to my heart as I served Elsie Gaches, home of our mentally challenged brothers and sisters, sons and daughters. The links are at http://anitokid.blogspot.com/2007/04/sonia-roco-i-kid-you-not.html and http://anitokid.blogspot.com/2007/04/april-is-autism-awareness-month.html.
    Hoping for your kind consideration regarding this matter. More power! Mabuhay!

    Leslie Mapugay aka AnitoKid

  46. Pingback: Zoli's Blog
  47. Sridhar Vembu,

    Surely you love your child, but some of us have been knee deep and neck deep in following what “alternative treatments” have been offered to autistic kids and we know the psychology of how parents are entrapped by the DAN! doctors and other “alertnative medicine” practictioners, homepaths (it’s water with big promises of cures attached).

    First parents are given a worst case scenario prognosis from pediatricians who don’t know how autistic kids can change, some metamorphose into almost normal adults, or into geeky techies — surely you’ve all met them in the IT industry. Some like my autistc adult child mostly can’t live on their own, or not without major support. Some of the folks who need major support are also very bright and can write better than the average person (see: Amanda Baggs, ballastexistenz blog).

    But the parents have this bleak future in mind when the quacks roll in with “autism is treatable” all you need to do is x, y or z. Listen, if you really really really love your child you’ll pay me for the cadillac version of my treatment. First send your kid’s urine off to this one lab, which will give you the impression of high heavy metals in the kids’ uring (watch for these people to get shut down in the not too distant future, they are lying and ripping people off and working with the DAN! dox), then after we’ve convinced you that your kid is heavy metal poisoned, we’ll give you either a fake chelator and we all wait to see if your kid has one of those typical autistic bursts of development that we can attribute to the sham treatment.

    Or we can put your child’s health and life in danger with real caustic and poisonous IV drugs. THEN, and here’st he really cool part, so long as the kid doesn’t die, if he gets really sick THAT’S A GOOD THING. No, really, it’s a “healing regression.” If the kid gets a major fever, that’s good. If he can’t eat, that’s a good sign. Breaks out in a rash? Good! soon he’ll be normal. No, really, this is how it works.

    And then after a while and the parents have spent tremendous money on high priced tests and supplements and drugs, the parents give up and adapt, if they haven’t killed the kid…

    And the kids that would have become more normal anyway, well that progress is attributed to the quack and his or her genius.

    Please don’t aid in the entrapment of other parents into this. It’s very serious. It’s not a game.

  48. Sridhar Vembu,

    Surely you love your child, but some of us have been knee deep and neck deep in following what “alternative treatments” have been offered to autistic kids and we know the psychology of how parents are entrapped by the DAN! doctors and other “alertnative medicine” practictioners, homepaths (it’s water with big promises of cures attached).

    First parents are given a worst case scenario prognosis from pediatricians who don’t know how autistic kids can change, some metamorphose into almost normal adults, or into geeky techies — surely you’ve all met them in the IT industry. Some like my autistc adult child mostly can’t live on their own, or not without major support. Some of the folks who need major support are also very bright and can write better than the average person (see: Amanda Baggs, ballastexistenz blog).

    But the parents have this bleak future in mind when the quacks roll in with “autism is treatable” all you need to do is x, y or z. Listen, if you really really really love your child you’ll pay me for the cadillac version of my treatment. First send your kid’s urine off to this one lab, which will give you the impression of high heavy metals in the kids’ uring (watch for these people to get shut down in the not too distant future, they are lying and ripping people off and working with the DAN! dox), then after we’ve convinced you that your kid is heavy metal poisoned, we’ll give you either a fake chelator and we all wait to see if your kid has one of those typical autistic bursts of development that we can attribute to the sham treatment.

    Or we can put your child’s health and life in danger with real caustic and poisonous IV drugs. THEN, and here’st he really cool part, so long as the kid doesn’t die, if he gets really sick THAT’S A GOOD THING. No, really, it’s a “healing regression.” If the kid gets a major fever, that’s good. If he can’t eat, that’s a good sign. Breaks out in a rash? Good! soon he’ll be normal. No, really, this is how it works.

    And then after a while and the parents have spent tremendous money on high priced tests and supplements and drugs, the parents give up and adapt, if they haven’t killed the kid…

    And the kids that would have become more normal anyway, well that progress is attributed to the quack and his or her genius.

    Please don’t aid in the entrapment of other parents into this. It’s very serious. It’s not a game.

Comments are closed.