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.

Published by

Robert Scoble

As Startup Liaison for Rackspace, the Open Cloud Computing Company, Scoble travels the world looking for what's happening on the bleeding edge of technology for Rackspace's startup program. He's interviewed thousands of executives and technology innovators and reports what he learns in books ("The Age of Context," a book coauthored with Forbes author Shel Israel, has been released at http://amzn.to/AgeOfContext ), YouTube, and many social media sites where he's followed by millions of people. Best place to watch me is on Facebook at http://www.facebook.com/RobertScoble

Comments

  1. Great post.

    Nice to see that people can drive on in their lives and careers with this kind of difficulty at home. So many people seem to carry home to work with them (in a negative way) or take their work worries home in the evening (and strain their personal lives and relationships).

    Best of luck to the Zoho team and here’s hoping they are right and the internet does help people find a way through these kinds of difficulties.

  2. Great post.

    Nice to see that people can drive on in their lives and careers with this kind of difficulty at home. So many people seem to carry home to work with them (in a negative way) or take their work worries home in the evening (and strain their personal lives and relationships).

    Best of luck to the Zoho team and here’s hoping they are right and the internet does help people find a way through these kinds of difficulties.

  3. Great entry. I didn’t realize the problem is no frequent, and I admire the parents of autistic children. Having two kids myself I can hardly imagine how hard it is to them.

    Making me think a little bit more realistic about the technology and business, too…

  4. Great entry. I didn’t realize the problem is no frequent, and I admire the parents of autistic children. Having two kids myself I can hardly imagine how hard it is to them.

    Making me think a little bit more realistic about the technology and business, too…

  5. Yeah, me neither. But as I learn more about it it really scares me how prevalent it is becoming. Palo Alto just opened up two more classes for autistic children.

  6. Yeah, me neither. But as I learn more about it it really scares me how prevalent it is becoming. Palo Alto just opened up two more classes for autistic children.

  7. Do you help out your friends? I mean, you could sell your beamer and lexus and get some ratty second hand car. Donate the money to an Autistic carer?

    Out of all the bloggers I read you do seem to be the richest.

    monk.e.boy

  8. Do you help out your friends? I mean, you could sell your beamer and lexus and get some ratty second hand car. Donate the money to an Autistic carer?

    Out of all the bloggers I read you do seem to be the richest.

    monk.e.boy

  9. Monk.e.boy, you’re just being rude. Besides, I don’t think that what they need most is money. How would money help in this case?

    BTW If Scoble is the richest blogger you read… come on.

  10. Monk.e.boy, you’re just being rude. Besides, I don’t think that what they need most is money. How would money help in this case?

    BTW If Scoble is the richest blogger you read… come on.

  11. Although I have a “normal” child, I too am still quite fascinated by autism. It’s such a complex societal and sceintific mystery: why have the numbers soared? And why do so many parents of autistic children see a difference when vaccines are administered?

    As my kid, 7, had go in for yet more painful shots just last week, I tried to count up the amount of vaccine’s she’s had since birth. And how many did we (forty-somethings) have in our childhood? And why are vaccines administered in twos and threes? And which twos and threes, as a child’s regime seems to vary from physician to physician, from what I can tell from informally polling other moms.

    Even if you don’t have an autistic child, the ever-increasing vaccine regime mandated for children gives one a TON of things to ponder. And I ponder a lot about the role of Big Pharm so very cozy with Big Gov… you can’t help but, especially after the recent HPV vaccine nonsense in Texas.

  12. Although I have a “normal” child, I too am still quite fascinated by autism. It’s such a complex societal and sceintific mystery: why have the numbers soared? And why do so many parents of autistic children see a difference when vaccines are administered?

    As my kid, 7, had go in for yet more painful shots just last week, I tried to count up the amount of vaccine’s she’s had since birth. And how many did we (forty-somethings) have in our childhood? And why are vaccines administered in twos and threes? And which twos and threes, as a child’s regime seems to vary from physician to physician, from what I can tell from informally polling other moms.

    Even if you don’t have an autistic child, the ever-increasing vaccine regime mandated for children gives one a TON of things to ponder. And I ponder a lot about the role of Big Pharm so very cozy with Big Gov… you can’t help but, especially after the recent HPV vaccine nonsense in Texas.

  13. Thank you for this post!

    My daughter didn’t start speaking in full sentences until she was 4. She was diagnosed with Autism when she was 2.5 years old. She is 11 now. In some ways appears very normal, but “quirky.” Technically her diagnosis is now “high functioning autism” or Asperger’s Syndrome depending on who you talk to, so she’s nothing like the kids in the videos. If you are familiar with Temple Grandin and the kind of Autism she has, that’s my daughter. No matter what, it sucks. But you do what you have to do for your kid and I wouldn’t trade her for anything.

    Autism is a spectrum disorder, so you’ll find kids like what you see in those videos, all the way up to people that you would never suspect have Autism, you just assume their parents didn’t raise them right because they say rude things, aren’t interested in conversation or don’t have eye contact.

    In some ways, individuals with higher functioning autism have it tougher because they are expected to function in a world they barely understand, but they don’t get the support and compassion that lower functioning individuals do. It’s very clear when a child is hitting his/her head against the wall or not talking that there’s a problem. Not so much for my daughter who sometimes sounds like she’s speaking as a robot, gets very upset at any change in routine, stims (compulsively tickles her fingers against the side of her head when she’s bored or overwhelmed) and has no interest in talking with other kids unless it’s about something that she’s already thinking about.

  14. Thank you for this post!

    My daughter didn’t start speaking in full sentences until she was 4. She was diagnosed with Autism when she was 2.5 years old. She is 11 now. In some ways appears very normal, but “quirky.” Technically her diagnosis is now “high functioning autism” or Asperger’s Syndrome depending on who you talk to, so she’s nothing like the kids in the videos. If you are familiar with Temple Grandin and the kind of Autism she has, that’s my daughter. No matter what, it sucks. But you do what you have to do for your kid and I wouldn’t trade her for anything.

    Autism is a spectrum disorder, so you’ll find kids like what you see in those videos, all the way up to people that you would never suspect have Autism, you just assume their parents didn’t raise them right because they say rude things, aren’t interested in conversation or don’t have eye contact.

    In some ways, individuals with higher functioning autism have it tougher because they are expected to function in a world they barely understand, but they don’t get the support and compassion that lower functioning individuals do. It’s very clear when a child is hitting his/her head against the wall or not talking that there’s a problem. Not so much for my daughter who sometimes sounds like she’s speaking as a robot, gets very upset at any change in routine, stims (compulsively tickles her fingers against the side of her head when she’s bored or overwhelmed) and has no interest in talking with other kids unless it’s about something that she’s already thinking about.

  15. Robert,
    Thank you for spreading the word on autism. I know Zoho can take care of itself, and it is the autistic kids that need real help!

    To be honest, it is my wife Pramila who is the real source of strength for me in all this. She has it 100 times harder than me, yet somehow she finds the strength to keep going. Having an autistic child has made both of us better people, better able to relate to and appreciate suffering of all kinds.

    Thank you again.

    Sridhar

  16. Robert,
    Thank you for spreading the word on autism. I know Zoho can take care of itself, and it is the autistic kids that need real help!

    To be honest, it is my wife Pramila who is the real source of strength for me in all this. She has it 100 times harder than me, yet somehow she finds the strength to keep going. Having an autistic child has made both of us better people, better able to relate to and appreciate suffering of all kinds.

    Thank you again.

    Sridhar

  17. Thanks for helping with autism awareness. I’m the parent of a teen on the autism spectrum–nothing like what your friend is going through, but I still have concerns about my daughter being independent and worry about her personal safety. She made me very proud this morning by telling me that she was going to do her persuasive speech in comm class on the importance of early diagnosis/intervention of autism. I told her that stories were coming out about Cho, the VTech shooter, and told her that VTech would likely never happened if Cho had gotten the care and intervention that is now proving to be very effective.

    Your friend is right about the Internet. It’s how I figured out 10 years ago what was going on with my daughter. At that time I was educating medical workers and teachers, but still couldn’t get a real diagnosis until she was 10 because they only understood classic autism.

    I think it’s especially important that the IT community acknowledges and understands autism. My personal theory is that the tech community has a much higher incidence of autism because there are very valuable skill sets. It’s not all negative and devastating. In fact, in my house, it’s celebrated.

    Robert–plenty more to read if you are interested. You can buzz me at Twitter (tinfoilraccoon). Very interesting to dig through archives on /. after the Columbine shootings–quite a sh*tstorm about autism, geekdom and bullying.

  18. Thanks for helping with autism awareness. I’m the parent of a teen on the autism spectrum–nothing like what your friend is going through, but I still have concerns about my daughter being independent and worry about her personal safety. She made me very proud this morning by telling me that she was going to do her persuasive speech in comm class on the importance of early diagnosis/intervention of autism. I told her that stories were coming out about Cho, the VTech shooter, and told her that VTech would likely never happened if Cho had gotten the care and intervention that is now proving to be very effective.

    Your friend is right about the Internet. It’s how I figured out 10 years ago what was going on with my daughter. At that time I was educating medical workers and teachers, but still couldn’t get a real diagnosis until she was 10 because they only understood classic autism.

    I think it’s especially important that the IT community acknowledges and understands autism. My personal theory is that the tech community has a much higher incidence of autism because there are very valuable skill sets. It’s not all negative and devastating. In fact, in my house, it’s celebrated.

    Robert–plenty more to read if you are interested. You can buzz me at Twitter (tinfoilraccoon). Very interesting to dig through archives on /. after the Columbine shootings–quite a sh*tstorm about autism, geekdom and bullying.

  19. Robert:
    We have a son with Asperger’s Syndrome which is one of the mildest forms of autism. We, too, think his condition is linked to his early vaccinations. Fortunately, years of occupation therapy worked wonders for him and most people that know our son don’t know that he is autistic.

    Rolling Stone published a controversial article by Robert Kennedy Jr. back in 2005 on the link between vaccinations and autism and on the alleged cover-up/damage control that has been done by friends of Eli Lilly, the maker of the additive that is believed to be the cause/trigger.

    It is definitely worth reading:
    http://www.rollingstone.com/politics/story/7395411/deadly_immunity/

    Thanks
    sm

  20. Robert:
    We have a son with Asperger’s Syndrome which is one of the mildest forms of autism. We, too, think his condition is linked to his early vaccinations. Fortunately, years of occupation therapy worked wonders for him and most people that know our son don’t know that he is autistic.

    Rolling Stone published a controversial article by Robert Kennedy Jr. back in 2005 on the link between vaccinations and autism and on the alleged cover-up/damage control that has been done by friends of Eli Lilly, the maker of the additive that is believed to be the cause/trigger.

    It is definitely worth reading:
    http://www.rollingstone.com/politics/story/7395411/deadly_immunity/

    Thanks
    sm

  21. Thats interesting

    I remmber a discusion internaly in British Telecom about the increased incedence of autisiam in Ipswitch which is where the main RnD site for BT was.

  22. Wonderful post.
    It’san impoortant part of what keeps us all coming back to your blog.
    As for monk.e.boy, he has to live with himself.

  23. Thats interesting

    I remmber a discusion internaly in British Telecom about the increased incedence of autisiam in Ipswitch which is where the main RnD site for BT was.

  24. Wonderful post.
    It’san impoortant part of what keeps us all coming back to your blog.
    As for monk.e.boy, he has to live with himself.

  25. Monk.e.boy, why are you trying to punish someone for using his public position to help a very good cause? Why should we expect Robert to do something that we don’t expect others to do?

    Maybe Robert’s ten times richer than you – I’m sure there are plenty of people who are ten times richer than him, and plenty of people who are ten times poorer than you.

    If you’re just trying to show how clever or moral you are, why not find someone with an autistic child and help them? Or come up with a clever way of raising money for research into autism?

    Good post, Robert. We have friends with a severely atypical autistic child. What a card for fate to play on you. Thanks for raising it.

  26. Monk.e.boy, why are you trying to punish someone for using his public position to help a very good cause? Why should we expect Robert to do something that we don’t expect others to do?

    Maybe Robert’s ten times richer than you – I’m sure there are plenty of people who are ten times richer than him, and plenty of people who are ten times poorer than you.

    If you’re just trying to show how clever or moral you are, why not find someone with an autistic child and help them? Or come up with a clever way of raising money for research into autism?

    Good post, Robert. We have friends with a severely atypical autistic child. What a card for fate to play on you. Thanks for raising it.

  27. Thanks for bringing some more light on a very big topic. I am a techie geek and I have a son with autism. We are blessed that he communicates but that does not make life easier. Thanks for bringing more attention to this epidemic.

  28. Thanks for bringing some more light on a very big topic. I am a techie geek and I have a son with autism. We are blessed that he communicates but that does not make life easier. Thanks for bringing more attention to this epidemic.

  29. Hi Rob,

    Great post! I’m proud that Sridhar hails from the same city as mine (Chennai). To add on to the subject, his company also runs one of the finest parenting blog http://www.jambav.com which is a veritable discussion forum on Autism and other subjects pertaining to kids and their development.

    regards
    Ramesh

  30. Hi Rob,

    Great post! I’m proud that Sridhar hails from the same city as mine (Chennai). To add on to the subject, his company also runs one of the finest parenting blog http://www.jambav.com which is a veritable discussion forum on Autism and other subjects pertaining to kids and their development.

    regards
    Ramesh

  31. Robert: Great post. I’ve often said that my son’s autism has given me clarity in business. I’ve been able to see through the morass of office politics, etc…because it is irrelevant to argue and take a stand on things that are, well, somewhat trivial. Ex: discussing who is taking ownership on a tactic in a project – arguing about it, just doesn’t matter when I had a meeting with a special needs doctor two hours before telling me my child has an abnormally low IQ. Somehow, I just ‘invest’ energy into things that don’t really matter.

    So, since I’m a technology PR guy, I decided to do what I can to put our ‘life’ with our autistic child (he is high functioning on the spectrum, as they say) in context, with a dash of humor and realism. How he relates to kids in school, what we worry about, what is said in public…the whole banana.

    Take a look…it ain’t Scobleizer…but its my little effort to the blog world about our life with autism.

    http://www.autisticdad.blog.com

  32. Robert: Great post. I’ve often said that my son’s autism has given me clarity in business. I’ve been able to see through the morass of office politics, etc…because it is irrelevant to argue and take a stand on things that are, well, somewhat trivial. Ex: discussing who is taking ownership on a tactic in a project – arguing about it, just doesn’t matter when I had a meeting with a special needs doctor two hours before telling me my child has an abnormally low IQ. Somehow, I just ‘invest’ energy into things that don’t really matter.

    So, since I’m a technology PR guy, I decided to do what I can to put our ‘life’ with our autistic child (he is high functioning on the spectrum, as they say) in context, with a dash of humor and realism. How he relates to kids in school, what we worry about, what is said in public…the whole banana.

    Take a look…it ain’t Scobleizer…but its my little effort to the blog world about our life with autism.

    http://www.autisticdad.blog.com

  33. hi

    so no wonder my post on autism got read.

    thanks a lot scoble.

    now when are u going to let my dad start his podcast on motivation?

    http://meganaths.blogspot.com/

    or ask kiruba to call me
    or email me = mega at resonet.in

  34. hi

    so no wonder my post on autism got read.

    thanks a lot scoble.

    now when are u going to let my dad start his podcast on motivation?

    http://meganaths.blogspot.com/

    or ask kiruba to call me
    or email me = mega at resonet.in

  35. Are Philanthropy and Entrepreneurship Compatible?

    “Odd thing for an office ’style’ company to go into – cartoons”

    “Brilliant strategic move or jumping the shark? I can’t decide.”

    “At least all their eggs arent in online software; office”

    “I unde…

  36. Interesting story, Robert. Thanks!

    As a father of an autistic child, I can definitely relate. Fortunately my son is very high-functioning, but we are still constantly faced with challenges.

    It really does put things in perspective though between your career and your home-life. My son really does come first, but I’ve learned to balance both. At the end of the day though, the problems and issues faced with my career always play second fiddle to my son….which is the way it should be anyways, right? :)

  37. Interesting story, Robert. Thanks!

    As a father of an autistic child, I can definitely relate. Fortunately my son is very high-functioning, but we are still constantly faced with challenges.

    It really does put things in perspective though between your career and your home-life. My son really does come first, but I’ve learned to balance both. At the end of the day though, the problems and issues faced with my career always play second fiddle to my son….which is the way it should be anyways, right? :)

  38. I can’t imagine how hard it would be to have a child with autism. That being said, there is a significant amount of research out there that strongly suggests that vaccinations have no link to autism. There’s a great site from the Centers for Disease Control here.

    Some of the important things to note – a lot of the critics of vaccines are concerned about mercury (including Robert F Kennedy), which is a preservative. According to our pediatrician, mercury is not used as a preservative any longer in the childhood vaccines that people are concerned about.

    Second, there is emerging research suggesting that there is a strong genetic link to autism. Studies of identical twins have shown high concordance rates (if one twin has it, so does the other).

    Third, while the loss of language skills in autistic children is very striking and typically occurs around 18 months (when the MMR vaccine is typically administered), doctors are realizing it is possible to diagnose signs of autism much earlier. They’re discovering that some traits in newborns (like not wanting to be held by their parents) may be a sign of autism. That strongly suggests that vaccines are not a cause.

    One of the challenges in analyzing the rise in autism is that standards for diagnosing it have changed. 20 years ago children who were probably autistic were labeled as mentally retarded.

    Autism is a tragedy, but I think it would be a bigger tragedy to chase phantom causes.

  39. I can’t imagine how hard it would be to have a child with autism. That being said, there is a significant amount of research out there that strongly suggests that vaccinations have no link to autism. There’s a great site from the Centers for Disease Control here.

    Some of the important things to note – a lot of the critics of vaccines are concerned about mercury (including Robert F Kennedy), which is a preservative. According to our pediatrician, mercury is not used as a preservative any longer in the childhood vaccines that people are concerned about.

    Second, there is emerging research suggesting that there is a strong genetic link to autism. Studies of identical twins have shown high concordance rates (if one twin has it, so does the other).

    Third, while the loss of language skills in autistic children is very striking and typically occurs around 18 months (when the MMR vaccine is typically administered), doctors are realizing it is possible to diagnose signs of autism much earlier. They’re discovering that some traits in newborns (like not wanting to be held by their parents) may be a sign of autism. That strongly suggests that vaccines are not a cause.

    One of the challenges in analyzing the rise in autism is that standards for diagnosing it have changed. 20 years ago children who were probably autistic were labeled as mentally retarded.

    Autism is a tragedy, but I think it would be a bigger tragedy to chase phantom causes.

  40. I have posted links to a couple of books on the subject of vaccinations, and how to be safe. I want to say that I am not an anti-vaccination activist, but I still believe we are way over-doing it – the number of shots we give our kids has gone up like factor of 3 in the last 15 years. See my post at http://blogs.zoho.com/general/scoble-on-autism/
    for more information.

    Robert, your post means a lot to me and countless parents in our situation. Thank you.

    Sridhar

  41. I have posted links to a couple of books on the subject of vaccinations, and how to be safe. I want to say that I am not an anti-vaccination activist, but I still believe we are way over-doing it – the number of shots we give our kids has gone up like factor of 3 in the last 15 years. See my post at http://blogs.zoho.com/general/scoble-on-autism/
    for more information.

    Robert, your post means a lot to me and countless parents in our situation. Thank you.

    Sridhar

  42. The UC Davis MIND Institute (one of the premier brain research institutes in the nation and world!) has information about vaccinations here:

    http://tinyurl.com/3683zm

    While it is a very complex subject, and we will never be sure, and there is almost certainly an environmental aspect to autism, the evidence does not currently point to vaccinations.

    Please take a look at UC Davis’s Center for Childrens Environmental Health at:

    http://tinyurl.com/2pe6zr

    for information about possible linkages of autism to PCB’s in the environment. These studies are being conducted by UCSF, UCD, and lots of other people who are much smarter than me and will get to the bottom of this eventually.

    There is a lot of misinformation on the web. Look at the studies yourself. I hope this helps…

  43. The UC Davis MIND Institute (one of the premier brain research institutes in the nation and world!) has information about vaccinations here:

    http://tinyurl.com/3683zm

    While it is a very complex subject, and we will never be sure, and there is almost certainly an environmental aspect to autism, the evidence does not currently point to vaccinations.

    Please take a look at UC Davis’s Center for Childrens Environmental Health at:

    http://tinyurl.com/2pe6zr

    for information about possible linkages of autism to PCB’s in the environment. These studies are being conducted by UCSF, UCD, and lots of other people who are much smarter than me and will get to the bottom of this eventually.

    There is a lot of misinformation on the web. Look at the studies yourself. I hope this helps…

  44. oh thank you. Your pal is right, in that here in Silicon Valley, there are so many children with this diagnoses [bit of a chicken and egg situation in many respects] I have two autistic boys and my husband works in techy land. If we lived somewhere else there would not have been the services.
    Best wishes
    http://whitterer-autism.blogspot.com

  45. oh thank you. Your pal is right, in that here in Silicon Valley, there are so many children with this diagnoses [bit of a chicken and egg situation in many respects] I have two autistic boys and my husband works in techy land. If we lived somewhere else there would not have been the services.
    Best wishes
    http://whitterer-autism.blogspot.com

  46. Robert, thank you for this post, and Sridhar, thank you for sharing your story with us in such an unexpected forum. I agree that the Internet is the perfect place for parents of kids on the spectrum to share what we’re learning out here on the front lines–whatever our individual stories may be. (I started a blog for that purpose a few months ago: http://www.familyroomblog.com). I’m always moved by people who have the courage to talk about this topic so compassionately and forthrightly. Cheers to both of you.

  47. Robert, thank you for this post, and Sridhar, thank you for sharing your story with us in such an unexpected forum. I agree that the Internet is the perfect place for parents of kids on the spectrum to share what we’re learning out here on the front lines–whatever our individual stories may be. (I started a blog for that purpose a few months ago: http://www.familyroomblog.com). I’m always moved by people who have the courage to talk about this topic so compassionately and forthrightly. Cheers to both of you.

  48. Thank you for this very insightful blog on the “dual life” many of us lead.

    To add to my husband (Sridhar)’s comments that you have detailed:

    1. Here is an important source on Safe Vaccinations that every parent I believe ought to read, in order to be informed and make the right choices. “What your doctor may not tell you about childhood vaccinations” by Stephanie Cave, M.D. It talks about safe vaccinating procedures. Here it is on Amazon http://www.amazon.com/What-Doctor-About-Childrens-Vaccinations/dp/0446677078/ref=pd_bbs_sr_1/002-0491714-3351242?ie=UTF8&s=books&qid=1178300569&sr=8-1

    2. Here are some pointers if you already have a child on the spectrum. Autism is treatable, and many of our kids who are being treated biomedically are making huge gains, and in some cases, complete recovery. In any case, not knowing what caused autism in our children, is no reason not to treat our kids. We may never know what caused it in every case. There is research emerging to suggest heavy metal toxicity, chronic inflammation, gut dysbiosis, immune dysfunction, chronic infections, and a variety of other treatable conditions, in our kids. Treating these conditions do improve the behavioral symptoms associated with autism. A starting point to look into treating biomedically is the website of the Autism Research Institute:
    http://www.autismwebsite.com/ari/index.htm

    or read these books:
    “Children with Starving Brains”, by Jacqueline McCandless, MD and
    “Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies” by Kenneth Bock, MD

    These books are about a holistic treatment approach including supplements, diets, improving the detox and immune systems, etc. Many Yahoo! groups and parent support groups are a wealth of information, from other parents who are going through this path.

    3. If your kids are not on the spectrum, wouldnt it be great for them to make friends with our kids?

    I am an engineer, about to plunge full time into autism work, so my heart goes out to many of us who are leading this dual-life, to fund the expensive treatments for our kids. When your child is head-banging/unresponsive/hyperactive/kicking/screaming…remember that your child is sick, and this is our wake-up call, to question the triggers, and clean up our environment.

    Again, thank you very much,
    Pramila
    ps: These comments are my opinion only, and do not constitute medical advice.

  49. Thank you for this very insightful blog on the “dual life” many of us lead.

    To add to my husband (Sridhar)’s comments that you have detailed:

    1. Here is an important source on Safe Vaccinations that every parent I believe ought to read, in order to be informed and make the right choices. “What your doctor may not tell you about childhood vaccinations” by Stephanie Cave, M.D. It talks about safe vaccinating procedures. Here it is on Amazon http://www.amazon.com/What-Doctor-About-Childrens-Vaccinations/dp/0446677078/ref=pd_bbs_sr_1/002-0491714-3351242?ie=UTF8&s=books&qid=1178300569&sr=8-1

    2. Here are some pointers if you already have a child on the spectrum. Autism is treatable, and many of our kids who are being treated biomedically are making huge gains, and in some cases, complete recovery. In any case, not knowing what caused autism in our children, is no reason not to treat our kids. We may never know what caused it in every case. There is research emerging to suggest heavy metal toxicity, chronic inflammation, gut dysbiosis, immune dysfunction, chronic infections, and a variety of other treatable conditions, in our kids. Treating these conditions do improve the behavioral symptoms associated with autism. A starting point to look into treating biomedically is the website of the Autism Research Institute:
    http://www.autismwebsite.com/ari/index.htm

    or read these books:
    “Children with Starving Brains”, by Jacqueline McCandless, MD and
    “Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies” by Kenneth Bock, MD

    These books are about a holistic treatment approach including supplements, diets, improving the detox and immune systems, etc. Many Yahoo! groups and parent support groups are a wealth of information, from other parents who are going through this path.

    3. If your kids are not on the spectrum, wouldnt it be great for them to make friends with our kids?

    I am an engineer, about to plunge full time into autism work, so my heart goes out to many of us who are leading this dual-life, to fund the expensive treatments for our kids. When your child is head-banging/unresponsive/hyperactive/kicking/screaming…remember that your child is sick, and this is our wake-up call, to question the triggers, and clean up our environment.

    Again, thank you very much,
    Pramila
    ps: These comments are my opinion only, and do not constitute medical advice.

  50. Hi Robert-
    I have a podcast focused on Learning disabilities called the LD Podcast (www.ldpodcast.com) While my kids have relatively garden variety issues, my friend and frequent contributor, Melody, has a 15 yr old son with Asperger’s syndrome. The things parents of kids with issues go through is tough, and yet, most of us feel lucky that we don’t have children with cancer, severe physical disabilities or other even more severe problems, that we see when taking our kids from one expert to another- it all depends on your perspective.
    Demographics for autism are really skewed because good programs are scarce, forcing parents to move to areas where the services are available, causing artificially high concentrations of kids on the autism spectrum in certain areas. Also, as the number of kids with autism has risen, the number of kids diagnosed with “simple” mental retardation has decreased at about the same rate, so part of the increase can, in part, be attributed to better diagnosis.
    I interviewed Dr. Perri Klass, the author of Quirky Kids on my podcast a few months ago, and she mentioned that as a pediatrician, she didn’t receive training in medical school about things like Asperger’s, so part of the problem is also in early identification and treatment of developmental problems.
    Thank you so much for talking about this on your blog, and for supporting your friend-dealing with these issues is tough and very personal, and so many parents are quiet because it is so very hard to discuss.

  51. Hi Robert-
    I have a podcast focused on Learning disabilities called the LD Podcast (www.ldpodcast.com) While my kids have relatively garden variety issues, my friend and frequent contributor, Melody, has a 15 yr old son with Asperger’s syndrome. The things parents of kids with issues go through is tough, and yet, most of us feel lucky that we don’t have children with cancer, severe physical disabilities or other even more severe problems, that we see when taking our kids from one expert to another- it all depends on your perspective.
    Demographics for autism are really skewed because good programs are scarce, forcing parents to move to areas where the services are available, causing artificially high concentrations of kids on the autism spectrum in certain areas. Also, as the number of kids with autism has risen, the number of kids diagnosed with “simple” mental retardation has decreased at about the same rate, so part of the increase can, in part, be attributed to better diagnosis.
    I interviewed Dr. Perri Klass, the author of Quirky Kids on my podcast a few months ago, and she mentioned that as a pediatrician, she didn’t receive training in medical school about things like Asperger’s, so part of the problem is also in early identification and treatment of developmental problems.
    Thank you so much for talking about this on your blog, and for supporting your friend-dealing with these issues is tough and very personal, and so many parents are quiet because it is so very hard to discuss.

  52. @35, before you pronounce “nonsense”, it is worth keeping in mind that a lot of parents have observed it. Second, biochemistry is sufficiently complex that even now we don’t understand a lot of what is going on inside our bodies from a biochemical point of view. That is why drug discovery is so hard, and so hit and miss. Most doctor’s understanding of the human body is “mechanistic” in nature (i.e what parts go where, how to fix them up etc), and while huge advances have been made in the surgical professions, illnesses like Asthma are still far from a cure (and incidentally, childhood asthma has gone up substantially too).

    Ponder this: Would being trained as an auto-mechanic automatically lead to an understanding of the chemistry of gasoline or thermodynamics of internal combustion?

    Sridhar

  53. @35, before you pronounce “nonsense”, it is worth keeping in mind that a lot of parents have observed it. Second, biochemistry is sufficiently complex that even now we don’t understand a lot of what is going on inside our bodies from a biochemical point of view. That is why drug discovery is so hard, and so hit and miss. Most doctor’s understanding of the human body is “mechanistic” in nature (i.e what parts go where, how to fix them up etc), and while huge advances have been made in the surgical professions, illnesses like Asthma are still far from a cure (and incidentally, childhood asthma has gone up substantially too).

    Ponder this: Would being trained as an auto-mechanic automatically lead to an understanding of the chemistry of gasoline or thermodynamics of internal combustion?

    Sridhar

  54. A friend of mine here in Arizona has started a foundation for research in autism. Her teenager is autistic, and she decided to do something besides despair. SAARC has some of the finest researchers in the world, and alliances with Barrow and TGEN. If anyone needs introductions or links to resources, I’d be happy to provide.

    And to add to the comments on the perspective you gain about business when your child is autistic: this perspective comes with things like cancer, too. Some of these afflictions are left-handed gifts.

  55. A friend of mine here in Arizona has started a foundation for research in autism. Her teenager is autistic, and she decided to do something besides despair. SAARC has some of the finest researchers in the world, and alliances with Barrow and TGEN. If anyone needs introductions or links to resources, I’d be happy to provide.

    And to add to the comments on the perspective you gain about business when your child is autistic: this perspective comes with things like cancer, too. Some of these afflictions are left-handed gifts.

  56. @36, your analysis is spot on re: improved diagnosis of autism leads to an increase in the number of autistic people.

    @17, I remember reading an article in Wired alleging wherever you find the high technology industry, you find autism (especially HFA or Aspergers).

    Robert, you and I have met. I have aspergers and am pretty open about it. It doesn’t affect my work in the least. Indeed, it may be helpful in terms of focusing on one task at a time (in my case, it’s computer programming).

  57. @36, your analysis is spot on re: improved diagnosis of autism leads to an increase in the number of autistic people.

    @17, I remember reading an article in Wired alleging wherever you find the high technology industry, you find autism (especially HFA or Aspergers).

    Robert, you and I have met. I have aspergers and am pretty open about it. It doesn’t affect my work in the least. Indeed, it may be helpful in terms of focusing on one task at a time (in my case, it’s computer programming).

  58. What a fantastic post. Thanks for writing this!

    I have a 14-year-old high-functioning son, and I myself am a formally diagnosed adult Aspie (I have Asperger Syndrome).

    Now, to the people who want to broadly dismiss the vaccine connection, although I am not a “vaccines CAUSE autism”-type, I will point out my own theory. I BELIEVE, being on the spectrum MYSELF and knowing my family pedigree, that there is both a genetic component AND in SOME cases, an environmental trigger. The etiology is utterly unknown, however, there is no question that some treaments work on some people and not others, and that *some* kids have ABSOLUTELY correlatable onset of problems. Not vague, “oh at about 18 months s/he lost language”, but videotaped days of horrible reactions and screaming and fevers and debilitating diarrhea, followed by loss of language and social relatedness. This, incidentally is not the story of our family, but there are definitely people out there whose story that is.

    There is no question in my mind, having spoken to hundreds of parents over the years, that SOME kids respond to assorted biomedical interventions, and some DON’T. Some respond to particular therapeutic interventions, and some don’t. As a parent, one has to research and try many approaches.

    To me, it’s patently irresponsible to make blanket attributions (or denials!) of causality when there are so many possible treatments, and one can’t know until tried which, if any, will have an impact in a particular individual. It’s pretty intuitive to me that the underlying etiology of any particular case, in the long run, will prove out to *matter*.

    Thanks again for the fantastic post. I am sure you made a great impact, and awareness is crucial. :-)

  59. What a fantastic post. Thanks for writing this!

    I have a 14-year-old high-functioning son, and I myself am a formally diagnosed adult Aspie (I have Asperger Syndrome).

    Now, to the people who want to broadly dismiss the vaccine connection, although I am not a “vaccines CAUSE autism”-type, I will point out my own theory. I BELIEVE, being on the spectrum MYSELF and knowing my family pedigree, that there is both a genetic component AND in SOME cases, an environmental trigger. The etiology is utterly unknown, however, there is no question that some treaments work on some people and not others, and that *some* kids have ABSOLUTELY correlatable onset of problems. Not vague, “oh at about 18 months s/he lost language”, but videotaped days of horrible reactions and screaming and fevers and debilitating diarrhea, followed by loss of language and social relatedness. This, incidentally is not the story of our family, but there are definitely people out there whose story that is.

    There is no question in my mind, having spoken to hundreds of parents over the years, that SOME kids respond to assorted biomedical interventions, and some DON’T. Some respond to particular therapeutic interventions, and some don’t. As a parent, one has to research and try many approaches.

    To me, it’s patently irresponsible to make blanket attributions (or denials!) of causality when there are so many possible treatments, and one can’t know until tried which, if any, will have an impact in a particular individual. It’s pretty intuitive to me that the underlying etiology of any particular case, in the long run, will prove out to *matter*.

    Thanks again for the fantastic post. I am sure you made a great impact, and awareness is crucial. :-)

  60. the biggest difficulty i have with the autism-vaccination link is that it doesn’t explain family lineages where autism and austism-like traits are exhibited through generations, nor does it explain how vaccines ’cause’ autism. each of the alleged causative agents have been removed and yet there is no positive change in reported diagnoses. i am not saying there could be no link, rather i suspect the linkage was merely an association in time.

    a much stronger case can be made for a link between improvements in diagnosis, changes in funding models that require a diagnosed disability before schools and parents can get assistance, an increase in awareness of the existence of autism spectrum ‘disorders’ – and the probability of a genetic component in light of lineage evidence.

    it seems odd to me that autism spectrum disorders have a higher correlation with higher income/iq parents (many of whom display elements of autistic behaviours) and yet the cause must be ‘out there’ …

    after my diagnosis of aspergers (at age 33!) quite a lot of my personal history made more sense. as did some of the more ‘colourful’ members of my family tree.

    and yeah, i’m highly educated (undertaking phd) and associated with computer and information technologies. they may easier to understand than people – but my interest is in social/societal relationships to/with technologies. [always with the complex stuff :P]

    i’ve played with some of zoho’s tools. much fun to be had.

  61. the biggest difficulty i have with the autism-vaccination link is that it doesn’t explain family lineages where autism and austism-like traits are exhibited through generations, nor does it explain how vaccines ’cause’ autism. each of the alleged causative agents have been removed and yet there is no positive change in reported diagnoses. i am not saying there could be no link, rather i suspect the linkage was merely an association in time.

    a much stronger case can be made for a link between improvements in diagnosis, changes in funding models that require a diagnosed disability before schools and parents can get assistance, an increase in awareness of the existence of autism spectrum ‘disorders’ – and the probability of a genetic component in light of lineage evidence.

    it seems odd to me that autism spectrum disorders have a higher correlation with higher income/iq parents (many of whom display elements of autistic behaviours) and yet the cause must be ‘out there’ …

    after my diagnosis of aspergers (at age 33!) quite a lot of my personal history made more sense. as did some of the more ‘colourful’ members of my family tree.

    and yeah, i’m highly educated (undertaking phd) and associated with computer and information technologies. they may easier to understand than people – but my interest is in social/societal relationships to/with technologies. [always with the complex stuff :P]

    i’ve played with some of zoho’s tools. much fun to be had.

  62. Thank you for acknowledging this. We parents of those on the Autism Spectrum, often find ourselves on the defensive side of the fence.

    I truly appreciate that someone who does not live Autism, acknowledges that we are not bad parents. We probably are some of the best parents, most stressed parents, and confused by the multitudes of “opinions” out there.

    Thanks for making us recognize that we are doing ok!

  63. Thank you for acknowledging this. We parents of those on the Autism Spectrum, often find ourselves on the defensive side of the fence.

    I truly appreciate that someone who does not live Autism, acknowledges that we are not bad parents. We probably are some of the best parents, most stressed parents, and confused by the multitudes of “opinions” out there.

    Thanks for making us recognize that we are doing ok!

  64. Good to see comment 4 mentioning Simon Baron Cohen, the leading researcher in the field.

    A few points:

    1) The “explosion” in diagnoses occured from 1980 onwards: which was the same time that the official diagnosis of autism was expanded from classic autism to the full spectrum, including what we now call Asperger’s.

    2) The vaccinations: thiomiseral (spelling?), the mercury containing ingredient used in vaccines that is often blamed. Well, Japan removed it some years before others did and autism rates climbed at the same rate in Japan as elsewhere. There’s also an English researcher who says that it’s the measles part of the new MMR vaccine that causes it. Completely discredited (the Lancet withdrew his paper for example).

    3) There is still, over and above the change in diagnosis, a rise in autism. No one is ruling out an environmental factor, although Simon Baron Cohen’s explanation (he himself does not rule out enviro) seems to be the best supported. Assortative mating, as briefly discussed in that Wired piece. Put very simply more geeks are mating with more geeks (systemizers with systemizaers more formally) leading to reinforcement of the genes which lead to both geeks and autism. Thus the observed rises in both Silicon Valley and Ipswich (home of the British Telcom equivalent of Bell Labs).

    The reasons for the assortative mating are multiple….we all are more likely to date someone from work these days, compared to one or two generations ago and workplaces are sorted quite a lot on the systemizing/empathising axis (programming at one end, nursing say at the other). The general fluidity of society, the rise in status of geeks etc etc.

    One Simon Baron Cohen paper is highly instructive. He surveyed the students in the Faculty of Arts and also of Engineering at Cambridge University. In the extended families of the engineers there was vastly more autism than in those of the Arts students.

    4) There are a number of other explanations floated…one paper, using Freakonomics style data dredging indicated a correlation with TV watching…the rise of Cable across the US matches the rise in autism. However, that also matches the expansion in the diagnosis, 1980 onwards

    5) Yes, it is treatable to an extent. Just as non-autistic people need to learn about others, their emotions and desires, such things can be taught (to an extent). One recent thing that appears to help is a DVD (rather like Thomas the Tank Engine stuff) released by Baron Cohen a few months back.

    I don’t think that anyone believable really claims to have found “the” cause, but most seem to be concentrating on genetics, not environmental triggers.

    BTW, no, I’m not an expert on the matter. I simply run a blog on the subject.

  65. Good to see comment 4 mentioning Simon Baron Cohen, the leading researcher in the field.

    A few points:

    1) The “explosion” in diagnoses occured from 1980 onwards: which was the same time that the official diagnosis of autism was expanded from classic autism to the full spectrum, including what we now call Asperger’s.

    2) The vaccinations: thiomiseral (spelling?), the mercury containing ingredient used in vaccines that is often blamed. Well, Japan removed it some years before others did and autism rates climbed at the same rate in Japan as elsewhere. There’s also an English researcher who says that it’s the measles part of the new MMR vaccine that causes it. Completely discredited (the Lancet withdrew his paper for example).

    3) There is still, over and above the change in diagnosis, a rise in autism. No one is ruling out an environmental factor, although Simon Baron Cohen’s explanation (he himself does not rule out enviro) seems to be the best supported. Assortative mating, as briefly discussed in that Wired piece. Put very simply more geeks are mating with more geeks (systemizers with systemizaers more formally) leading to reinforcement of the genes which lead to both geeks and autism. Thus the observed rises in both Silicon Valley and Ipswich (home of the British Telcom equivalent of Bell Labs).

    The reasons for the assortative mating are multiple….we all are more likely to date someone from work these days, compared to one or two generations ago and workplaces are sorted quite a lot on the systemizing/empathising axis (programming at one end, nursing say at the other). The general fluidity of society, the rise in status of geeks etc etc.

    One Simon Baron Cohen paper is highly instructive. He surveyed the students in the Faculty of Arts and also of Engineering at Cambridge University. In the extended families of the engineers there was vastly more autism than in those of the Arts students.

    4) There are a number of other explanations floated…one paper, using Freakonomics style data dredging indicated a correlation with TV watching…the rise of Cable across the US matches the rise in autism. However, that also matches the expansion in the diagnosis, 1980 onwards

    5) Yes, it is treatable to an extent. Just as non-autistic people need to learn about others, their emotions and desires, such things can be taught (to an extent). One recent thing that appears to help is a DVD (rather like Thomas the Tank Engine stuff) released by Baron Cohen a few months back.

    I don’t think that anyone believable really claims to have found “the” cause, but most seem to be concentrating on genetics, not environmental triggers.

    BTW, no, I’m not an expert on the matter. I simply run a blog on the subject.

  66. I am parent to a severely autistic seven year old girl. I am horrified by some of the things said in this post. I really don’t appreciate the blanket judgement that my life is hellish thanks.

    Secondly, the vaccine hypotheis (it isn’t a theory as it is too weak to assume that term) has been found wanting numerous times. As has the very idea that what we are saying is an actual increase. To date, there is no reputable science (replicated, peer reviewed published in a credible scientific journal) to establish any link between any vaccination and autism. Conversely, there are many studies of this standard that refute these ideas.

    There is currently an Autism Omnibus case going through the US court system in which 4,700 cases are being brought at one time from people who believe vaccines caused their child’s autism. Part of the Omnibus rules state petitioners must find three cases to represent all. They can’t.

    I blog mainly about the dangerous quackery associated with autism. I wonder if Sridhar and his wife know that of the group of doctors they have just blithely recommended, one killed an autistic five year old trying to ‘cure’ his ‘vaccine induced autism’?

    Several are Scientologists and several have court orders against them.

    I think it is dangerously irresponsible for people to post half the story about these things. Vaccines have saved countless lives over the last century. There is no evidence to back up the idea they have anything to do with autism.

    I would also like to respectfully ask people to be more careful about the words they use to describe autism. ‘hellish’, ‘epidemic’ ‘disease’ are not respectful words to use of other people. If you want to hear about autism, then please listen to autistic people.

  67. I am parent to a severely autistic seven year old girl. I am horrified by some of the things said in this post. I really don’t appreciate the blanket judgement that my life is hellish thanks.

    Secondly, the vaccine hypotheis (it isn’t a theory as it is too weak to assume that term) has been found wanting numerous times. As has the very idea that what we are saying is an actual increase. To date, there is no reputable science (replicated, peer reviewed published in a credible scientific journal) to establish any link between any vaccination and autism. Conversely, there are many studies of this standard that refute these ideas.

    There is currently an Autism Omnibus case going through the US court system in which 4,700 cases are being brought at one time from people who believe vaccines caused their child’s autism. Part of the Omnibus rules state petitioners must find three cases to represent all. They can’t.

    I blog mainly about the dangerous quackery associated with autism. I wonder if Sridhar and his wife know that of the group of doctors they have just blithely recommended, one killed an autistic five year old trying to ‘cure’ his ‘vaccine induced autism’?

    Several are Scientologists and several have court orders against them.

    I think it is dangerously irresponsible for people to post half the story about these things. Vaccines have saved countless lives over the last century. There is no evidence to back up the idea they have anything to do with autism.

    I would also like to respectfully ask people to be more careful about the words they use to describe autism. ‘hellish’, ‘epidemic’ ‘disease’ are not respectful words to use of other people. If you want to hear about autism, then please listen to autistic people.

  68. Robert, with 1 in 150 diagnosed, soon everyone will know someone who is or has an autistic child. There is hope with early intervention, although it might feel as there is no light at the end of the tunnel for many parents going through this. My heart goes out to Sridhar and his wife, who are both heroes. While it might be easier for them to remain silent in their anguish, like so many parents, they’ve decided to openly discuss their child’s diagnosis and embrace the families of other autistic children. For this, I’m sure they are doing more good for families than any software as a service could provide.

  69. Robert, with 1 in 150 diagnosed, soon everyone will know someone who is or has an autistic child. There is hope with early intervention, although it might feel as there is no light at the end of the tunnel for many parents going through this. My heart goes out to Sridhar and his wife, who are both heroes. While it might be easier for them to remain silent in their anguish, like so many parents, they’ve decided to openly discuss their child’s diagnosis and embrace the families of other autistic children. For this, I’m sure they are doing more good for families than any software as a service could provide.

  70. Kev: thanks for adding to the conversation here. The words I used came right out of the mouths of parents who have autistic children. Agreed that “hellish” shouldn’t be used to describe all parents who find themselves in this situation. My heart goes out to those who do consider it one of the most difficult things they’ve ever faced.

    I find it interesting that you also didn’t note that I also put a blanket statement down about parents with autistic children being heroes of mine. It’s interesting that you didn’t refute that generalization, but did the negative ones.

    As for the debate on vaccinations, I actually really appreciate your point of view here. My wife and I are about to bring a new life into the world and this discussion is a good one for us to have.

    Thanks and sorry if we offended you.

  71. Kev: thanks for adding to the conversation here. The words I used came right out of the mouths of parents who have autistic children. Agreed that “hellish” shouldn’t be used to describe all parents who find themselves in this situation. My heart goes out to those who do consider it one of the most difficult things they’ve ever faced.

    I find it interesting that you also didn’t note that I also put a blanket statement down about parents with autistic children being heroes of mine. It’s interesting that you didn’t refute that generalization, but did the negative ones.

    As for the debate on vaccinations, I actually really appreciate your point of view here. My wife and I are about to bring a new life into the world and this discussion is a good one for us to have.

    Thanks and sorry if we offended you.

  72. Great post! I met and worked with a family who had an autistic son. Somehow, he really wanted to ice skate so we rallied to get companies to donate skates, got him out on the ice 1x a week, etc. The littlest things would set him off – too much light, too much sound, change in temperature and he would fall apart, yelling, screaming. It was really hard. You are absolutely right it’s a huge challenge to raise an autistic child. The parents that do definitely deserve a shout out.

    They, too, thought it was from the vaccinations. Hopefully, people will keep pushing science to find out.

  73. Great post! I met and worked with a family who had an autistic son. Somehow, he really wanted to ice skate so we rallied to get companies to donate skates, got him out on the ice 1x a week, etc. The littlest things would set him off – too much light, too much sound, change in temperature and he would fall apart, yelling, screaming. It was really hard. You are absolutely right it’s a huge challenge to raise an autistic child. The parents that do definitely deserve a shout out.

    They, too, thought it was from the vaccinations. Hopefully, people will keep pushing science to find out.

  74. My son is 23 now, he has Asperger syn. (high functioning autism) – He could say the alphabet and talk, he was out of diapers – but didn’t want to look at you and wanted things the same all the time, nothing on his plate could touch, we went through the complete lose of speech, all bathroom use stopped(he was horrified of the bathroom) so from 2-5 we made a portable for another area of the house not resembling a bathroom in any way. He seemed at about 2-4 to totally regress and stopped talking, we went through the pointing/grunting indicating what he wanted, the head banging and the screaming rolled into a fetal position on the floor (no matter where we were, in a store, at home, outside). Noises would set him off, lawn mowers,and sudden loud noises.

    We lived in Dallas, had a great neurologist, we went to N.Tx Women’s college who refered us to others that could evaluate and help us. 20 some years ago there was not much help and autistic promblem solvers were few and far between.
    But we ended up with a therapist who worked with him in several areas, but most importantly as he started to grow and age and work with us, I am thrilled to say he finished High School with a full diploma, he was main streamed throughout all of school and only had resource help as needed. It was hard for all of us, but we didn’t give up.

    He just finished his first (started spring) semester at the University, he took only one classs English 1010. He did great, B+, he wants to be a writer.

    My point in writing this is to encourage other parents or those who work with autistic children, they are in there, they just can’t communicate, they require a gentle touch and understanding, but don’t give up, some can be helped to a wonderfull fulfilling life. Bless all those who volunteer sometime helping the parents also, just to get a few minutes rest, or a break from the worries would be great for them.

    Money is always an issue, insurace is difficult if you have it, many times charges get refused or denied. So, if you are helping please continue, if your not, please consider it.

  75. My son is 23 now, he has Asperger syn. (high functioning autism) – He could say the alphabet and talk, he was out of diapers – but didn’t want to look at you and wanted things the same all the time, nothing on his plate could touch, we went through the complete lose of speech, all bathroom use stopped(he was horrified of the bathroom) so from 2-5 we made a portable for another area of the house not resembling a bathroom in any way. He seemed at about 2-4 to totally regress and stopped talking, we went through the pointing/grunting indicating what he wanted, the head banging and the screaming rolled into a fetal position on the floor (no matter where we were, in a store, at home, outside). Noises would set him off, lawn mowers,and sudden loud noises.

    We lived in Dallas, had a great neurologist, we went to N.Tx Women’s college who refered us to others that could evaluate and help us. 20 some years ago there was not much help and autistic promblem solvers were few and far between.
    But we ended up with a therapist who worked with him in several areas, but most importantly as he started to grow and age and work with us, I am thrilled to say he finished High School with a full diploma, he was main streamed throughout all of school and only had resource help as needed. It was hard for all of us, but we didn’t give up.

    He just finished his first (started spring) semester at the University, he took only one classs English 1010. He did great, B+, he wants to be a writer.

    My point in writing this is to encourage other parents or those who work with autistic children, they are in there, they just can’t communicate, they require a gentle touch and understanding, but don’t give up, some can be helped to a wonderfull fulfilling life. Bless all those who volunteer sometime helping the parents also, just to get a few minutes rest, or a break from the worries would be great for them.

    Money is always an issue, insurace is difficult if you have it, many times charges get refused or denied. So, if you are helping please continue, if your not, please consider it.

  76. I don’t want to take away from the job that these parents have, but wanted to point out another side:

    It’s possible that the rise in autism can be attributed to better diagnosis. As doctors understand it more, they can identify it better and the numbers rise accordingly.

  77. I don’t want to take away from the job that these parents have, but wanted to point out another side:

    It’s possible that the rise in autism can be attributed to better diagnosis. As doctors understand it more, they can identify it better and the numbers rise accordingly.

  78. Your “help” here, Mr. Scoble is not helpful. Not at all. If you think parents of autistic children are heros, how about those “really autistic” children who grow up and have children. Here’s a clue: it happens alot, and the kids are sometimes autistic and sometimes normal.

    I am an autistic adult, and have a “middle functioning” (disabled) autistic adult child and a typically developing adult child. I do NOT want to be anyone’s hero or heroine. Especially, not the hero of someone who is dumb enough to buy the autism epidemic hype and the lies about vaccines. If you want a real education about autism you can check out the 600+ blog entries about autism on the Autism Diva blog. Autism Diva has some insights on the MIND institute and even quotes Pramila (commented above) in one entry. She has details on the death of Abubakar by way of chelation you won’t get in the mainstream media.

    Sorry, dude, get a clue, please. Just one clue would be nice. Talk to autistic adults through their blogs (autism-hub.co.uk). The parents you learned about autism from are badly misinformed, even if they are your friends and are nice people.

    Just because the child doesn’t react to you normally doesn’t mean he doesn’t know you are in the room. You might want to check out the “Strange Son” book which details how aware an Indian boy, Tito is. It’s a pretty awful book, but you can learn about how aware autistic kids are when they look like they aren’t aware.

  79. Your “help” here, Mr. Scoble is not helpful. Not at all. If you think parents of autistic children are heros, how about those “really autistic” children who grow up and have children. Here’s a clue: it happens alot, and the kids are sometimes autistic and sometimes normal.

    I am an autistic adult, and have a “middle functioning” (disabled) autistic adult child and a typically developing adult child. I do NOT want to be anyone’s hero or heroine. Especially, not the hero of someone who is dumb enough to buy the autism epidemic hype and the lies about vaccines. If you want a real education about autism you can check out the 600+ blog entries about autism on the Autism Diva blog. Autism Diva has some insights on the MIND institute and even quotes Pramila (commented above) in one entry. She has details on the death of Abubakar by way of chelation you won’t get in the mainstream media.

    Sorry, dude, get a clue, please. Just one clue would be nice. Talk to autistic adults through their blogs (autism-hub.co.uk). The parents you learned about autism from are badly misinformed, even if they are your friends and are nice people.

    Just because the child doesn’t react to you normally doesn’t mean he doesn’t know you are in the room. You might want to check out the “Strange Son” book which details how aware an Indian boy, Tito is. It’s a pretty awful book, but you can learn about how aware autistic kids are when they look like they aren’t aware.

  80. Thank you for putting this out to the universe. The more this message is heard the more we will be able to do for these children. My sweet grandson is autistic. My fears for his future are many but therapies have also given him a chance. That is why awareness is crucial. As a grandparent my heart aches in many ways. For my grandson and for my own child. It is a double edge sword for a grandparent.
    You are appreciated!

  81. Thank you for putting this out to the universe. The more this message is heard the more we will be able to do for these children. My sweet grandson is autistic. My fears for his future are many but therapies have also given him a chance. That is why awareness is crucial. As a grandparent my heart aches in many ways. For my grandson and for my own child. It is a double edge sword for a grandparent.
    You are appreciated!

  82. I understand that my husband’s points and my comments on vaccinations and biomedical treatments have stirred some discussions.

    There are children and adults with the autism diagnosis who are functioning at the point where they may not risk trying experimental treatments. Its upto parents and patients whether or not to treat something.

    However, there are real children, who you never see in public places, who cannot function well in any setting. They are head-banging, hyperactive, screaming, not potty-trained, smearing feaces. I understand how those parents feel, because I was there once. My son has come a long away out of those dark ages, but he still cannot converse or make friends. These parents, or their children, do not have the time or the energy to be writing in Blogs or “spreading the word”.

    It is for these children, and to prevent more of them, that we have to look deeply into every clue we get from these parents. Whether it is vaccines, environmental toxicity, pathogens… it is worth looking with an open mind.

    Our child has significant immunological problems, and cannot control many common pathogens that could affect his neurological function. For example, recently a certain anti-viral treatment has helped him in his reading and focus.

    Autism treatment seems to require careful experimentation for each kid, and careful observation. So it is a case where personalized treatment seems to be the way to go.

    And no, my kid did not watch TV, still doesnt, because most of our kids do not understand stories and are over-stimulated by the input.

    The “official treatment” for autism is behavioral therapy (or ABA) which, trust me, doesnt work for every kid, either (apart from costing about $50K a year)!

    I know parents from all strata of society who have kids with autism, but I see more highly educated/PhD/engineers (like ourselves) writing in blogs! As I said, there are many struggling families.
    They are selling their homes, taking loans, doing multiple jobs, exhausted and struggling to pay for treatments. You dont hear from them here…

    Pramila

  83. I understand that my husband’s points and my comments on vaccinations and biomedical treatments have stirred some discussions.

    There are children and adults with the autism diagnosis who are functioning at the point where they may not risk trying experimental treatments. Its upto parents and patients whether or not to treat something.

    However, there are real children, who you never see in public places, who cannot function well in any setting. They are head-banging, hyperactive, screaming, not potty-trained, smearing feaces. I understand how those parents feel, because I was there once. My son has come a long away out of those dark ages, but he still cannot converse or make friends. These parents, or their children, do not have the time or the energy to be writing in Blogs or “spreading the word”.

    It is for these children, and to prevent more of them, that we have to look deeply into every clue we get from these parents. Whether it is vaccines, environmental toxicity, pathogens… it is worth looking with an open mind.

    Our child has significant immunological problems, and cannot control many common pathogens that could affect his neurological function. For example, recently a certain anti-viral treatment has helped him in his reading and focus.

    Autism treatment seems to require careful experimentation for each kid, and careful observation. So it is a case where personalized treatment seems to be the way to go.

    And no, my kid did not watch TV, still doesnt, because most of our kids do not understand stories and are over-stimulated by the input.

    The “official treatment” for autism is behavioral therapy (or ABA) which, trust me, doesnt work for every kid, either (apart from costing about $50K a year)!

    I know parents from all strata of society who have kids with autism, but I see more highly educated/PhD/engineers (like ourselves) writing in blogs! As I said, there are many struggling families.
    They are selling their homes, taking loans, doing multiple jobs, exhausted and struggling to pay for treatments. You dont hear from them here…

    Pramila

  84. I just wanted to add a few points to those above concerning the lack of evidence linking vaccines to autism. I began exploring this issue in November 2002 in a piece I wrote in the New York Times Magazine suggesting the possibility of a link between thimerosal (the ethyl mercury-containing preservative that was used in some pediatric vaccines until about 2000) and autism.

    I’ve since become quite convinced there is no link. The most indisputable evidence of this comes from California, where the number of autism diagnoses continues to climb in cohorts of children who received less thimerosal than kids did in the 1950s, (as I explain in more detail at http://www.huffingtonpost.com/arthur-allen/autism-mercury-and-the-a_b_46488.html).

    Mr. Scoble’s admirable and talented friends seem to belong to the community of parents of autistics who believe their children have benefitted from various biomedical interventions. Not having an autistic child myself I wouldn’t stand in judgement on those who try such treatments, although obviously it would be a good idea to exercise caution about the more dangerous ones such as chelation and Lupron. But the idea that they are healing some damage done by vaccines has very little credibility.

    The MMR vaccine link to autism, as noted in posts above, is entirely discredited, even more so than thimerosal.

    As to the theory of an increased number of vaccinations per se causing an increase in autism, there is no evidence supporting it. First, autism is increasingly being diagnosed in countries that give far fewer vaccinations than we do. Second, there’s no even decent explanation(now that thimerosal is out) for a pathophysiology of a vaccine link. Third, vaccines aren’t the only thing that have increased during this period of greater autism diagnosis– how about cell phone use, or certain chemicals in the environment, or computer useage, etc. ad nauseum? All just as good, or bad, theories as vaccines.

    As I’ve stated before, on Slate.com, Huffington and elsewhere, the most likely case is that whatever increase has occurred is relatively small. Most of the increase is attributable to better diagnosis and changing attitudes toward autism. Reach Richard Grinker’s book Unstrange Minds to get a good explanation for this. And read my book Vaccine: the Controversial Story of Medicine’s Greatest Lifesaver for a detailed account of the origins of the autism theory, as well as background on the blame-vaccines-first crowd.

  85. I just wanted to add a few points to those above concerning the lack of evidence linking vaccines to autism. I began exploring this issue in November 2002 in a piece I wrote in the New York Times Magazine suggesting the possibility of a link between thimerosal (the ethyl mercury-containing preservative that was used in some pediatric vaccines until about 2000) and autism.

    I’ve since become quite convinced there is no link. The most indisputable evidence of this comes from California, where the number of autism diagnoses continues to climb in cohorts of children who received less thimerosal than kids did in the 1950s, (as I explain in more detail at http://www.huffingtonpost.com/arthur-allen/autism-mercury-and-the-a_b_46488.html).

    Mr. Scoble’s admirable and talented friends seem to belong to the community of parents of autistics who believe their children have benefitted from various biomedical interventions. Not having an autistic child myself I wouldn’t stand in judgement on those who try such treatments, although obviously it would be a good idea to exercise caution about the more dangerous ones such as chelation and Lupron. But the idea that they are healing some damage done by vaccines has very little credibility.

    The MMR vaccine link to autism, as noted in posts above, is entirely discredited, even more so than thimerosal.

    As to the theory of an increased number of vaccinations per se causing an increase in autism, there is no evidence supporting it. First, autism is increasingly being diagnosed in countries that give far fewer vaccinations than we do. Second, there’s no even decent explanation(now that thimerosal is out) for a pathophysiology of a vaccine link. Third, vaccines aren’t the only thing that have increased during this period of greater autism diagnosis– how about cell phone use, or certain chemicals in the environment, or computer useage, etc. ad nauseum? All just as good, or bad, theories as vaccines.

    As I’ve stated before, on Slate.com, Huffington and elsewhere, the most likely case is that whatever increase has occurred is relatively small. Most of the increase is attributable to better diagnosis and changing attitudes toward autism. Reach Richard Grinker’s book Unstrange Minds to get a good explanation for this. And read my book Vaccine: the Controversial Story of Medicine’s Greatest Lifesaver for a detailed account of the origins of the autism theory, as well as background on the blame-vaccines-first crowd.

  86. One info tech comment which is not heard often enough yet within autism circles, from another Valley venture CEO who is a parent of an autistic child: It is true that the treatments for the vaccine-triggered/vectored biochemical injuries/imbalances that are the cause of the vast majority of the exploding number of autism cases will be generated through Internet-based parent-biochemist (when competent physicians are involved it is in a biochemist capacity) mass collaboration.

    But today’s dozens of >200-tagless-posts-per-day 1990s-style Yahoo groups can not serve as that wonderful Internet basis. There is an ACUTE need for the huge autism community to adopt web 2.0 mechanisms.

    I welcome – and would be keen to take part in – any multi-autism-organization preparations for adopting these mechanisms.

    A big thanks to Robert for helping create even wider awareness!

    PS: No, given the typical severity of the condition it is not possible that improved diagnostication is behind the rise in registered occurrence – you don’t need a degree in anything to recognize autistic behavior.

  87. One info tech comment which is not heard often enough yet within autism circles, from another Valley venture CEO who is a parent of an autistic child: It is true that the treatments for the vaccine-triggered/vectored biochemical injuries/imbalances that are the cause of the vast majority of the exploding number of autism cases will be generated through Internet-based parent-biochemist (when competent physicians are involved it is in a biochemist capacity) mass collaboration.

    But today’s dozens of >200-tagless-posts-per-day 1990s-style Yahoo groups can not serve as that wonderful Internet basis. There is an ACUTE need for the huge autism community to adopt web 2.0 mechanisms.

    I welcome – and would be keen to take part in – any multi-autism-organization preparations for adopting these mechanisms.

    A big thanks to Robert for helping create even wider awareness!

    PS: No, given the typical severity of the condition it is not possible that improved diagnostication is behind the rise in registered occurrence – you don’t need a degree in anything to recognize autistic behavior.

  88. “It is for these children, and to prevent more of them, that we have to look deeply into every clue we get from these parents.”

    _To prevent more of them_.

    You should really think about what you said there Pramila because you’re talking genocide. There are always groups of people whom certain bigoted others would like to prevent from being born or living their lives. You owe it to your child to be a more thoughtful person than you are today.

    Oh, and btw, if it weren’t for auties you wouldn’t be communicating via the internet and your husband would be in another line of work.

    As for you Robert: You’re not “spreading the word” on autism (as Sridhar claims), you’re spreading hate and bigotry. I don’t appreciate it. My amazing child does not appreciate it. Since you’re soon to “bring a new life into the world” it would behoove you to begin to honor neurodiversity among all peoples.

  89. “It is for these children, and to prevent more of them, that we have to look deeply into every clue we get from these parents.”

    _To prevent more of them_.

    You should really think about what you said there Pramila because you’re talking genocide. There are always groups of people whom certain bigoted others would like to prevent from being born or living their lives. You owe it to your child to be a more thoughtful person than you are today.

    Oh, and btw, if it weren’t for auties you wouldn’t be communicating via the internet and your husband would be in another line of work.

    As for you Robert: You’re not “spreading the word” on autism (as Sridhar claims), you’re spreading hate and bigotry. I don’t appreciate it. My amazing child does not appreciate it. Since you’re soon to “bring a new life into the world” it would behoove you to begin to honor neurodiversity among all peoples.

  90. One of the key considerations with ASDs is that there are a range of co-morbid (such a lovely medical term) disorders/issues that complicate the whole thing.

    Many people identified on the spectrum also have one or more other distinct issues – physical, physiological, and/or psychological. This not only complicates diagnosis, but the efficacy of any proposed interventions.

    Some of us do learn way of coping, or of adapting, to the demands of the masses to ‘be normal’ (whatever ‘normal’ might be). Many others either cannot, or find it too taxing to do so.

    We do hear form struggling families, but since they’re often wrapped up in their struggles, they often don’t have the time or resources to be regular players.

    I am more than a little concerned when I see or hear of a family that have thrown all of their resources into so therapy or other for their child, in spite of whether it is having a positive effect or not. I live in a country where we haven’t quite yet thrown human beings into the maw of “the market” (that great social experiment of ours) – but even here, resourcing the kind of one-on-one interventions postulated by some from the “autism can be cured” cluster is impractical.

    Each child may be special (I have one of my own), but one wonders at the effect of investing whole lives (usually several lives) into individual children in the off chance that the particular regime being tried might produce a smile (for example).

    I was not diagnosed until I was 33. Much has changed for the (subjective) better for me since then. But I am sufficiently ‘high’ in the Asperger spectrum that adapting is merely hard. Society’s demand that we all behave in certain ways might be great for uniformity – but humans are not uniform. And the costs of homogeneity are vastly underrated by the masses, and many commentators/experts.

  91. One of the key considerations with ASDs is that there are a range of co-morbid (such a lovely medical term) disorders/issues that complicate the whole thing.

    Many people identified on the spectrum also have one or more other distinct issues – physical, physiological, and/or psychological. This not only complicates diagnosis, but the efficacy of any proposed interventions.

    Some of us do learn way of coping, or of adapting, to the demands of the masses to ‘be normal’ (whatever ‘normal’ might be). Many others either cannot, or find it too taxing to do so.

    We do hear form struggling families, but since they’re often wrapped up in their struggles, they often don’t have the time or resources to be regular players.

    I am more than a little concerned when I see or hear of a family that have thrown all of their resources into so therapy or other for their child, in spite of whether it is having a positive effect or not. I live in a country where we haven’t quite yet thrown human beings into the maw of “the market” (that great social experiment of ours) – but even here, resourcing the kind of one-on-one interventions postulated by some from the “autism can be cured” cluster is impractical.

    Each child may be special (I have one of my own), but one wonders at the effect of investing whole lives (usually several lives) into individual children in the off chance that the particular regime being tried might produce a smile (for example).

    I was not diagnosed until I was 33. Much has changed for the (subjective) better for me since then. But I am sufficiently ‘high’ in the Asperger spectrum that adapting is merely hard. Society’s demand that we all behave in certain ways might be great for uniformity – but humans are not uniform. And the costs of homogeneity are vastly underrated by the masses, and many commentators/experts.

  92. >#51 It’s possible that the rise in autism can be attributed to better diagnosis.

    That is true, but I never have seen a child like Maryam’s friend has when I was a kid. Palo Alto schools are adding classes for autistic kids at a quite rapid pace. Have you ever seen an autistic kid? You can’t miss these children. I seriously doubt they were missed in the past. You CAN’T miss these kids. They aren’t functioning normally and would stand out in any society.

  93. >#51 It’s possible that the rise in autism can be attributed to better diagnosis.

    That is true, but I never have seen a child like Maryam’s friend has when I was a kid. Palo Alto schools are adding classes for autistic kids at a quite rapid pace. Have you ever seen an autistic kid? You can’t miss these children. I seriously doubt they were missed in the past. You CAN’T miss these kids. They aren’t functioning normally and would stand out in any society.

  94. That is true, but I never have seen a child like Maryam’s friend has when I was a kid. Palo Alto schools are adding classes for autistic kids at a quite rapid pace. Have you ever seen an autistic kid? You can’t miss these children. I seriously doubt they were missed in the past. You CAN’T miss these kids. They aren’t functioning normally and would stand out in any society.

    Don’t be silly. Of course these kids have always been around. I took care of a couple when I worked at a group home in the 1980’s. It’s largely because of a broadening of the diagnostic criteria and better recognition, plus improved funding for services that allow them to remain in schools that’s responsible for the apparent increase in incidence, evidence for which was presented in this study. Before the early 1990’s many children now diagnosed as autistic were diagnosed with mental retardation or other classifications. Most likely, the incidence of autism has remained relatively stable or only increased somewhat.

    As for the alleged link between vaccines and autism, that is based on the worst kind of pseudoscience. Andrew Wakefield, the man responsible for a scare over the MMR supposedly causing autism, was paid by attorneys for plaintiffs claiming “vaccine injury,” and his paper was disavowed by 10 of the original 13 authors, all of whom removed their names from it. As for the mercury in thimerosal used as a vaccine preservative, except for flu vaccines (which most babies don’t get), thimerosal was removed from childhood vaccines in the US in 2002. Autism rates have not declined one iota since then, even though we are now five years out. That doesn’t stop Mark and David Geier from trying to twist the data to say otherwise, but the bottom line is that the epidemiological evidence does not support a link between mercury in vaccines and autism, either. Also, as Mr. Allen points out, autism is increasing in countries that give fewer vaccines than the U.S. Bottom line: There is no good scientific evidence that there is a link between vaccines and autism (and a lot of good scientific evidence against such a link), and it’s highly irresponsible of you to suggest that there is.

  95. That is true, but I never have seen a child like Maryam’s friend has when I was a kid. Palo Alto schools are adding classes for autistic kids at a quite rapid pace. Have you ever seen an autistic kid? You can’t miss these children. I seriously doubt they were missed in the past. You CAN’T miss these kids. They aren’t functioning normally and would stand out in any society.

    Don’t be silly. Of course these kids have always been around. I took care of a couple when I worked at a group home in the 1980’s. It’s largely because of a broadening of the diagnostic criteria and better recognition, plus improved funding for services that allow them to remain in schools that’s responsible for the apparent increase in incidence, evidence for which was presented in this study. Before the early 1990’s many children now diagnosed as autistic were diagnosed with mental retardation or other classifications. Most likely, the incidence of autism has remained relatively stable or only increased somewhat.

    As for the alleged link between vaccines and autism, that is based on the worst kind of pseudoscience. Andrew Wakefield, the man responsible for a scare over the MMR supposedly causing autism, was paid by attorneys for plaintiffs claiming “vaccine injury,” and his paper was disavowed by 10 of the original 13 authors, all of whom removed their names from it. As for the mercury in thimerosal used as a vaccine preservative, except for flu vaccines (which most babies don’t get), thimerosal was removed from childhood vaccines in the US in 2002. Autism rates have not declined one iota since then, even though we are now five years out. That doesn’t stop Mark and David Geier from trying to twist the data to say otherwise, but the bottom line is that the epidemiological evidence does not support a link between mercury in vaccines and autism, either. Also, as Mr. Allen points out, autism is increasing in countries that give fewer vaccines than the U.S. Bottom line: There is no good scientific evidence that there is a link between vaccines and autism (and a lot of good scientific evidence against such a link), and it’s highly irresponsible of you to suggest that there is.

  96. This is why I never vaccinated my kids. There is too much we don’t know about. These parents must be very special as God wouldn’t give a challenge to someone without giving them the powers to handle the challenge.

  97. This is why I never vaccinated my kids. There is too much we don’t know about. These parents must be very special as God wouldn’t give a challenge to someone without giving them the powers to handle the challenge.

  98. #57, Please, don’t get into semantics: it’s obvious Pramila referred to the prevention of this condition, not the children (“genocide”). I don’t believe you seriously think she meant what you accused her of.

  99. #57, Please, don’t get into semantics: it’s obvious Pramila referred to the prevention of this condition, not the children (“genocide”). I don’t believe you seriously think she meant what you accused her of.

  100. Mr. Scoble,

    I dare you to read these blog entries…
    Before you educate yourself on autism and where all the autistics have been you really are doing my community great disservice by offering hideously ill-informed opinions. It’s like you standing on a stump and informing a mixed group (in your nicest manners) that black people are ok for playing basketball, and they eat watermelon and fried chicken all the time, but you wouldn’t want one for a president of the US.

    You are hideously ill-informed as were your sources. Some of the bloggers you see who say they are autistic were in special ed classes as kids, have been diagnosed as retarded and/or schizophrenic (autism is a fairly new diagnosis for many communities and many parents used to refuse the dx, preferring no diagnosis or mental retardation) . You have no idea if a given blogger was a head-banging nonverbal child at age 4. You have no idea.

    Check out the ballastexistenz blog. Amanda Baggs was featured on a CNN report over two nights on Anderson Cooper, ballastexistenz is her blog.

    Really, don’t repeat bigoted and bad information until you get some more information. Please.
    http://autismdiva.blogspot.com/search?q=hidden+horde
    Especially look at this one:
    http://autismdiva.blogspot.com/2006/10/mark-blaxill-and-hidden-horde.html
    Please, it will only take a few minutes of your time.

    There’s a large bit of information on the question “where are all the adults with autism?”
    Also, you should read, “Unstrange Minds: Remapping the world of autism.” before you write another word on autis. Please. Please.

    Wave magazine from Silicon Valley had it figured out two years ago…
    http://www.thewavemag.com/pagegen.php?pagename=article&articleid=25361

    You don’t know how much you are hurting people like me and my autistic child when you write untrue things as if they were true.

  101. Mr. Scoble,

    I dare you to read these blog entries…
    Before you educate yourself on autism and where all the autistics have been you really are doing my community great disservice by offering hideously ill-informed opinions. It’s like you standing on a stump and informing a mixed group (in your nicest manners) that black people are ok for playing basketball, and they eat watermelon and fried chicken all the time, but you wouldn’t want one for a president of the US.

    You are hideously ill-informed as were your sources. Some of the bloggers you see who say they are autistic were in special ed classes as kids, have been diagnosed as retarded and/or schizophrenic (autism is a fairly new diagnosis for many communities and many parents used to refuse the dx, preferring no diagnosis or mental retardation) . You have no idea if a given blogger was a head-banging nonverbal child at age 4. You have no idea.

    Check out the ballastexistenz blog. Amanda Baggs was featured on a CNN report over two nights on Anderson Cooper, ballastexistenz is her blog.

    Really, don’t repeat bigoted and bad information until you get some more information. Please.
    http://autismdiva.blogspot.com/search?q=hidden+horde
    Especially look at this one:
    http://autismdiva.blogspot.com/2006/10/mark-blaxill-and-hidden-horde.html
    Please, it will only take a few minutes of your time.

    There’s a large bit of information on the question “where are all the adults with autism?”
    Also, you should read, “Unstrange Minds: Remapping the world of autism.” before you write another word on autis. Please. Please.

    Wave magazine from Silicon Valley had it figured out two years ago…
    http://www.thewavemag.com/pagegen.php?pagename=article&articleid=25361

    You don’t know how much you are hurting people like me and my autistic child when you write untrue things as if they were true.

  102. #51>>It’s possible that the rise in autism can be attributed to better diagnosis.

    As many others pointed out, it is impossible to miss an autistic kid, and particularly so in a school setting. School districts are struggling to create special needs classes for our children, because there is just no way most of our kids can function in a normal classroom.

    The US achieved universal schooling decades ago, and if autism rates 30 years ago were as high as they are today, it is just not possible for teachers of that time to not have noticed these kids. So the only possible other explanation would be that these kids were kept at home. Where would those autistic kids be now (i.e the ones who didn’t go to school)?

    I want to emphasize that it is not just “quirkiness” or “not being sociable” we are talking about here. I am not a very social person myself, and many people would consider me a bit quirky, but that is far, very far from the condition that afflicts my son. People who are talking about accepting diversity cannot possibly be talking about the same condition. At this point, I would be overjoyed if my son (and countless others like him) could post a comment in a blog someday.

  103. #51>>It’s possible that the rise in autism can be attributed to better diagnosis.

    As many others pointed out, it is impossible to miss an autistic kid, and particularly so in a school setting. School districts are struggling to create special needs classes for our children, because there is just no way most of our kids can function in a normal classroom.

    The US achieved universal schooling decades ago, and if autism rates 30 years ago were as high as they are today, it is just not possible for teachers of that time to not have noticed these kids. So the only possible other explanation would be that these kids were kept at home. Where would those autistic kids be now (i.e the ones who didn’t go to school)?

    I want to emphasize that it is not just “quirkiness” or “not being sociable” we are talking about here. I am not a very social person myself, and many people would consider me a bit quirky, but that is far, very far from the condition that afflicts my son. People who are talking about accepting diversity cannot possibly be talking about the same condition. At this point, I would be overjoyed if my son (and countless others like him) could post a comment in a blog someday.

  104. Sorry I hit
    “submit comment” before proofreading… got distracted. I meant to write:

    “Before you write about autism educate yourself on autism and about where all the autistics have been. You really are doing my community great disservice by offering hideously ill-informed opinions.”

    There’s some great information on unstrange.com , too. There’s enough there to let you know if you want to buy the book “Unstrange Minds:..” . It’s a fabulous book.

    You can buy the DVD “Autism is a World” too, to get a clue about how “what you see is NOT what you get.” “Autism is a World” is about Sue Rubin and was played on CNN a couple of years ago. Autistic people can look and be tested as mentally retarded as a children and end up doing college assignments (even if they still can’t speak at age 18) with autism.

  105. Sorry I hit
    “submit comment” before proofreading… got distracted. I meant to write:

    “Before you write about autism educate yourself on autism and about where all the autistics have been. You really are doing my community great disservice by offering hideously ill-informed opinions.”

    There’s some great information on unstrange.com , too. There’s enough there to let you know if you want to buy the book “Unstrange Minds:..” . It’s a fabulous book.

    You can buy the DVD “Autism is a World” too, to get a clue about how “what you see is NOT what you get.” “Autism is a World” is about Sue Rubin and was played on CNN a couple of years ago. Autistic people can look and be tested as mentally retarded as a children and end up doing college assignments (even if they still can’t speak at age 18) with autism.

  106. I have a child with ASD. However, my child does not have gastro-intestinal problems, does not smear feces or head-bang. My child is one of the many who would not have been diagnosed in the past, but is now on the spectrum.

    The California CDDS numbers show that the majority of people with autism receiving services in California do not have either mental retardation or severe behaviors. In the 1980’s, 90% of people with autism were considered to be mentally retarded (as well as having autism). That statistic alone should tell you that there are a huge number of children presently being diagnosed that would not previously have been diagnosed with autism.

    I am well aware that there has been a lot of publicity around autism recently. In many ways this is a good thing. But the increased publicity should not lead one to conclude that there has been an epidemic. And without an epidemic, there is no reason to assign a “modern” cause for autism. In particular, it is not sensible to assign vaccines as a cause for autism – there is no evidence for this assertion, and in fact, we know that neither thimerosal nor the MMR are responsible for autism in the vast majority of cases.

  107. I have a child with ASD. However, my child does not have gastro-intestinal problems, does not smear feces or head-bang. My child is one of the many who would not have been diagnosed in the past, but is now on the spectrum.

    The California CDDS numbers show that the majority of people with autism receiving services in California do not have either mental retardation or severe behaviors. In the 1980’s, 90% of people with autism were considered to be mentally retarded (as well as having autism). That statistic alone should tell you that there are a huge number of children presently being diagnosed that would not previously have been diagnosed with autism.

    I am well aware that there has been a lot of publicity around autism recently. In many ways this is a good thing. But the increased publicity should not lead one to conclude that there has been an epidemic. And without an epidemic, there is no reason to assign a “modern” cause for autism. In particular, it is not sensible to assign vaccines as a cause for autism – there is no evidence for this assertion, and in fact, we know that neither thimerosal nor the MMR are responsible for autism in the vast majority of cases.

  108. Thank you, Robert, for posting this.

    There are indeed many, many heroes and heroines in the autism world. My husband and I have given up jobs (including tenured positions) and career choices, moved our household (we now live with my elderly in-laws), spent all kinds of $$$—-all in search of the best education and services for our autistic son, Charlie. I chronicled a very difficult period in his life on Autismland at

    http://www.kristinachew.com

    —a period in which many of the difficult, some would say “hellish,” things happened to us. My son has self-injurious behaviors. He is minimally verbal. He is just learning to read (sight words for familiar objects on a special reading board) and he will be 10 years old in a few days. Etc. etc.. And every day of our life with him is filled with more light than dark, I can assure you.

    The heroes and heroines in the autism world are the autistic children who become autistic adults. Regarding autistic adults, and the “better diagnosis/better understanding” argument, is this essay by Roy Richard Grinker and myself, “If There’s No Autism Epidemic, Where Are All the Adults With Autism?”

    http://www.scoop.co.nz/stories/HL0705/S00047.htm

    Many regards from Kristina Chew
    http://autismvox.com

  109. Thank you, Robert, for posting this.

    There are indeed many, many heroes and heroines in the autism world. My husband and I have given up jobs (including tenured positions) and career choices, moved our household (we now live with my elderly in-laws), spent all kinds of $$$—-all in search of the best education and services for our autistic son, Charlie. I chronicled a very difficult period in his life on Autismland at

    http://www.kristinachew.com

    —a period in which many of the difficult, some would say “hellish,” things happened to us. My son has self-injurious behaviors. He is minimally verbal. He is just learning to read (sight words for familiar objects on a special reading board) and he will be 10 years old in a few days. Etc. etc.. And every day of our life with him is filled with more light than dark, I can assure you.

    The heroes and heroines in the autism world are the autistic children who become autistic adults. Regarding autistic adults, and the “better diagnosis/better understanding” argument, is this essay by Roy Richard Grinker and myself, “If There’s No Autism Epidemic, Where Are All the Adults With Autism?”

    http://www.scoop.co.nz/stories/HL0705/S00047.htm

    Many regards from Kristina Chew
    http://autismvox.com

  110. Thank you, Zoli Erdos. Yes, I meant the prevention of the pain and suffering. When my child had potty training issues, he probably had severe gastro-intestinal and bowel issues. Similarly kids who are banging their heads are probably in severe pain and cannot articulate it. The condition is what I was referring to.

    #52: Regarding the sad death of the child following IV-EDTA, it was concluded later that it was due to the administration of EDTA, as opposed to CaEDTA. The former could cause a sudden calcium depletion. (This is my understanding). Please note that many of us doing biomedical treatments do not all do chelation, and we do try other methods to trigger detox. Most of us do supplements, diets and several other necessary treatments. Treating pathogens and boosting immune function is another common approach. Chelation using CaEDTA is a dramatic treatment and needs careful supervision by the physician and parents to prevent mineral depletion, yeast overgrowth etc. However, some parents do report improvement of some symptoms after such treatments because it triggers the removal of lead. (CaEDTA may have other benefits). I understand it is a controversial treatment.

    I do not follow Autism Diva but I believe that the reference to me was in the context of efficacy of transdermal DMPS (another chelator). I quoted a speaker at a conference and I possibly minsunderstood his statement about its efficacy. Later that matter was clarified in my blog. I personally do not have experience with transdermal application of DMPS.

    We do not know what history books will say. It is possible that our children suffer from a physical condition that is different from the classical autism, and possibly environmentally triggered. We are just trying to do the best for our kids, at this point,

    Pramila

  111. Thank you, Zoli Erdos. Yes, I meant the prevention of the pain and suffering. When my child had potty training issues, he probably had severe gastro-intestinal and bowel issues. Similarly kids who are banging their heads are probably in severe pain and cannot articulate it. The condition is what I was referring to.

    #52: Regarding the sad death of the child following IV-EDTA, it was concluded later that it was due to the administration of EDTA, as opposed to CaEDTA. The former could cause a sudden calcium depletion. (This is my understanding). Please note that many of us doing biomedical treatments do not all do chelation, and we do try other methods to trigger detox. Most of us do supplements, diets and several other necessary treatments. Treating pathogens and boosting immune function is another common approach. Chelation using CaEDTA is a dramatic treatment and needs careful supervision by the physician and parents to prevent mineral depletion, yeast overgrowth etc. However, some parents do report improvement of some symptoms after such treatments because it triggers the removal of lead. (CaEDTA may have other benefits). I understand it is a controversial treatment.

    I do not follow Autism Diva but I believe that the reference to me was in the context of efficacy of transdermal DMPS (another chelator). I quoted a speaker at a conference and I possibly minsunderstood his statement about its efficacy. Later that matter was clarified in my blog. I personally do not have experience with transdermal application of DMPS.

    We do not know what history books will say. It is possible that our children suffer from a physical condition that is different from the classical autism, and possibly environmentally triggered. We are just trying to do the best for our kids, at this point,

    Pramila

  112. […] “Autism is a tragedy.” “It is a tragedy to find out that your child has autism.” “It is a tragedy that so many children today are being diagnosed with autism.” How often have you heard statements such as these? (Try here and here.) Or a reference to life with autism as “hell,” as recently mentioned on Scobleizer? […]

  113. I want to emphasize that it is not just “quirkiness” or “not being sociable” we are talking about here. I am not a very social person myself, and many people would consider me a bit quirky, but that is far, very far from the condition that afflicts my son. People who are talking about accepting diversity cannot possibly be talking about the same condition.

    I would like to suggest to you the possibility that since you don’t know the people you are talking about you are in no position to second guess their ‘severity’.

    My daughter is low functioning. Her IQ is below 70. And if I may allude to a comment Mr Scobble made, I am not suggesting life is not difficult. It frequently is. It is very, very far however from ‘hellish’.

    Mr and Mrs Srinivasan: I am talking about *exactly* the same sort of child as you are. She needs help. Good science, quality education. What she does not need is to be subjected to dangerous quackery, or that quackery promoted by people who really should know better.

    The EDTA was administered to Tariq on the advice of his previous Doctor, DAN! favourite, Dr Anju Usman. This is in Kerry’s case notes. Shortly after killing Tariq, Kerry himself was accepted as a DAN! Doctor.

    The people that Mr Srinivasan dismisses as ‘high functioning’ and who cannot possibly understand what his child – and others like him – are living as a life actually used to be those children. Please see the video I posted earlier. The only difference between these adults and your child is that very thing – they are adults.

  114. I want to emphasize that it is not just “quirkiness” or “not being sociable” we are talking about here. I am not a very social person myself, and many people would consider me a bit quirky, but that is far, very far from the condition that afflicts my son. People who are talking about accepting diversity cannot possibly be talking about the same condition.

    I would like to suggest to you the possibility that since you don’t know the people you are talking about you are in no position to second guess their ‘severity’.

    My daughter is low functioning. Her IQ is below 70. And if I may allude to a comment Mr Scobble made, I am not suggesting life is not difficult. It frequently is. It is very, very far however from ‘hellish’.

    Mr and Mrs Srinivasan: I am talking about *exactly* the same sort of child as you are. She needs help. Good science, quality education. What she does not need is to be subjected to dangerous quackery, or that quackery promoted by people who really should know better.

    The EDTA was administered to Tariq on the advice of his previous Doctor, DAN! favourite, Dr Anju Usman. This is in Kerry’s case notes. Shortly after killing Tariq, Kerry himself was accepted as a DAN! Doctor.

    The people that Mr Srinivasan dismisses as ‘high functioning’ and who cannot possibly understand what his child – and others like him – are living as a life actually used to be those children. Please see the video I posted earlier. The only difference between these adults and your child is that very thing – they are adults.

  115. Wait a minute, everybody. Maybe Robert didn’t have or take the time to deeply research autisim but you know what? I haven’t thought about Autisim in nearly seven years. Not once.

    Thanks to this post, I’ve been thinking about how we in tech could help. He shouldn’t have to ramp up to be an expert on the topic to get the most important message out: people need to notice this because something needs to be done.

  116. Wait a minute, everybody. Maybe Robert didn’t have or take the time to deeply research autisim but you know what? I haven’t thought about Autisim in nearly seven years. Not once.

    Thanks to this post, I’ve been thinking about how we in tech could help. He shouldn’t have to ramp up to be an expert on the topic to get the most important message out: people need to notice this because something needs to be done.

  117. Patricia: thanks, but they do have a point. Karoli’s words to me and Maryam made a big impact: http://www.drumsnwhistles.com/2007/05/06/noble-scoble-and-a-teachable-moment/

    The thing is, I’m just passing along what parents of autistic children have told me. I’m just the messenger. I think this whole discussion has been very valuable and, actually, I’m more on the camp of the scientists than even the parents who think vaccines caused, or played a part in, their child’s autism.

  118. Patricia: thanks, but they do have a point. Karoli’s words to me and Maryam made a big impact: http://www.drumsnwhistles.com/2007/05/06/noble-scoble-and-a-teachable-moment/

    The thing is, I’m just passing along what parents of autistic children have told me. I’m just the messenger. I think this whole discussion has been very valuable and, actually, I’m more on the camp of the scientists than even the parents who think vaccines caused, or played a part in, their child’s autism.

  119. Kev: >It is very, very far however from ‘hellish’.

    The child’s parents I know and have observed have VERY difficult lives. OK, maybe I shouldn’t have used the word “hellish.” But it’s not a life I’d volunteer for, that’s for sure. That’s why I said these parents are heroic. My hat is off to you for having such a great attitude. I don’t think I’d have that same attitude if I were in your shoes.

  120. Kev: >It is very, very far however from ‘hellish’.

    The child’s parents I know and have observed have VERY difficult lives. OK, maybe I shouldn’t have used the word “hellish.” But it’s not a life I’d volunteer for, that’s for sure. That’s why I said these parents are heroic. My hat is off to you for having such a great attitude. I don’t think I’d have that same attitude if I were in your shoes.

  121. I’m with Kev. Some could definitely call my 17 year old “low-functioning,” and for want of a better term, I have called him “severe.” That is one aspect, one way of looking at him. But it is the sum of only one part. Nat is a complex human being, and it takes more work, blood, sweat, and tears to figure him out than my other two supposedly normal sons. Sometimes. Funny how one’s perspective changes as children age! You learn from the “hell,” and when it is over, you truly are in “heaven.” The smallest triumph can make you weep with joy. You find strength you never knew you had.

    And you mention how your friends have aged. I feel for them, I really do. They have not gone through the entire cycle of understanding, learning,and acceptance yet. Autism is not a tragedy, but not knowing how to cope with it or other challenges is. Not having the right education program or the right supports is a tragedy. Not having the right adult services is a tragedy. But truly, autism is one of many difficult things life can throw your way, but it doesn’t make your child a wild beast, it just makes him tougher for you to know him. Things get better, sometimes in terms of pure development. My son is doing better in general now than at 10 or 12. He even had a bar mitzvah. He still has terrible tantrums and scares my youngest son. But I would not trade my family, my life for anything.

    And by the way, in terms of our appearance, my husband Ned Batchelder and I probably look better 25 years after we met, 17 years ofter the birth of our autstic son, than we did when we were younger, because we understand life a little better, and have learned what true strength and love really is.

  122. I’m with Kev. Some could definitely call my 17 year old “low-functioning,” and for want of a better term, I have called him “severe.” That is one aspect, one way of looking at him. But it is the sum of only one part. Nat is a complex human being, and it takes more work, blood, sweat, and tears to figure him out than my other two supposedly normal sons. Sometimes. Funny how one’s perspective changes as children age! You learn from the “hell,” and when it is over, you truly are in “heaven.” The smallest triumph can make you weep with joy. You find strength you never knew you had.

    And you mention how your friends have aged. I feel for them, I really do. They have not gone through the entire cycle of understanding, learning,and acceptance yet. Autism is not a tragedy, but not knowing how to cope with it or other challenges is. Not having the right education program or the right supports is a tragedy. Not having the right adult services is a tragedy. But truly, autism is one of many difficult things life can throw your way, but it doesn’t make your child a wild beast, it just makes him tougher for you to know him. Things get better, sometimes in terms of pure development. My son is doing better in general now than at 10 or 12. He even had a bar mitzvah. He still has terrible tantrums and scares my youngest son. But I would not trade my family, my life for anything.

    And by the way, in terms of our appearance, my husband Ned Batchelder and I probably look better 25 years after we met, 17 years ofter the birth of our autstic son, than we did when we were younger, because we understand life a little better, and have learned what true strength and love really is.

  123. Kev,
    I am not trying to tell you what is right for your kid, and same way, just grant us that we are smart enought to evaluate what works for our kid. And I have been around both academia and industry enough never to accept authority without question. I have seen numerous times in my technology career how authority figures have been wrong or on the wrong track, and how unheralded engineers and scientists, toiling in obscurity, have made critical breakthroughs.

    If “quackery” is the word you want to use for what I would call honest experimentation (which by definition admits the possibility of failure), that is fine by me. I am not here to persuade. All I ask is for people to investigate these things for themselves, and not accept their pediatricians (or anyone’s word, including mine) as gospel truth.

    I wish you well for your kid.

    Sridhar

  124. Kev,
    I am not trying to tell you what is right for your kid, and same way, just grant us that we are smart enought to evaluate what works for our kid. And I have been around both academia and industry enough never to accept authority without question. I have seen numerous times in my technology career how authority figures have been wrong or on the wrong track, and how unheralded engineers and scientists, toiling in obscurity, have made critical breakthroughs.

    If “quackery” is the word you want to use for what I would call honest experimentation (which by definition admits the possibility of failure), that is fine by me. I am not here to persuade. All I ask is for people to investigate these things for themselves, and not accept their pediatricians (or anyone’s word, including mine) as gospel truth.

    I wish you well for your kid.

    Sridhar

  125. “honest experimentation”

    On kids.

    Not cool.

    I’ll tell you about a recent story I blogged about. Someone who – just like you – thought vaccines caused autism and – just like you – decided to ‘treat’ that. She carefully researched the options, read all the information on the internet, weighed her options and then decided to chelate her son with intravenous shots of garlic and vinegar. She even went ahead a filmed it for a YouTube video. Nice.

    Turns out the doctor in charge of this procedure is no stranger to medical boards where he was found grossly negligent in the past.

    Honest experimentation?

    How about this story – an eight year old autistic boy died after being suffocated during an exorcism to rid his body of evil spirits.

    Honest experimentation? If not, why not? What’s the difference?

    My hat is off to you for having such a great attitude. I don’t think I’d have that same attitude if I were in your shoes.

    I appreciate the sentiment but the word ‘hellish’ is troublesome. Autistic people – and people of various other disabilities – are often dehumanised. ‘Souless’, ‘changeling’ – not a short hop, skip and a jump to ‘hellish’. I know you meant no harm but I do not want my daughter to have to grow up with these connotations.

    re: the great attitude. I want to point you to one of your fellow countrymen – the comedian Chris Rock. He explains it much better than I could.

  126. “honest experimentation”

    On kids.

    Not cool.

    I’ll tell you about a recent story I blogged about. Someone who – just like you – thought vaccines caused autism and – just like you – decided to ‘treat’ that. She carefully researched the options, read all the information on the internet, weighed her options and then decided to chelate her son with intravenous shots of garlic and vinegar. She even went ahead a filmed it for a YouTube video. Nice.

    Turns out the doctor in charge of this procedure is no stranger to medical boards where he was found grossly negligent in the past.

    Honest experimentation?

    How about this story – an eight year old autistic boy died after being suffocated during an exorcism to rid his body of evil spirits.

    Honest experimentation? If not, why not? What’s the difference?

    My hat is off to you for having such a great attitude. I don’t think I’d have that same attitude if I were in your shoes.

    I appreciate the sentiment but the word ‘hellish’ is troublesome. Autistic people – and people of various other disabilities – are often dehumanised. ‘Souless’, ‘changeling’ – not a short hop, skip and a jump to ‘hellish’. I know you meant no harm but I do not want my daughter to have to grow up with these connotations.

    re: the great attitude. I want to point you to one of your fellow countrymen – the comedian Chris Rock. He explains it much better than I could.

  127. Kev,
    I am not here to persuade you of the merits of what we do. We have seen progress with our son, and we are encouraged by that. If we stop seeing progress, we will try something else. You are overinterpreting the word “experimentation” – in my book, I would call everything we do, including “approved” therapies, like ABA, an experiment, meaning that the outcome is not known in advance. In that vein, not doing anything is also an experiment – a null experiment, if you will.

    We are not injecting ginger and vinegar, I assure you. Don’t conflate a the entire universe of parents trying various things with this.

    Sridhar

  128. Kev,
    I am not here to persuade you of the merits of what we do. We have seen progress with our son, and we are encouraged by that. If we stop seeing progress, we will try something else. You are overinterpreting the word “experimentation” – in my book, I would call everything we do, including “approved” therapies, like ABA, an experiment, meaning that the outcome is not known in advance. In that vein, not doing anything is also an experiment – a null experiment, if you will.

    We are not injecting ginger and vinegar, I assure you. Don’t conflate a the entire universe of parents trying various things with this.

    Sridhar

  129. 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.

  130. 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.

  131. 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

  132. 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

  133. 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.

  134. 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.

  135. 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.

  136. 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.

  137. 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

  138. 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

  139. 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.

  140. 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.

  141. 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”.

  142. 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”.

  143. 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

  144. 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

  145. 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!

  146. 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!

  147. @ 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

  148. @ 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

  149. “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.

  150. “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.

  151. 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

  152. 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

  153. 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!!

  154. 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!!

  155. 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.

  156. 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.

  157. 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

  158. 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

  159. 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

  160. 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

  161. “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.

  162. “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.

  163. 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.

  164. 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.

  165. 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.

  166. 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.

  167. 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.

  168. 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.

  169. 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.

  170. 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.

  171. 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.

  172. 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.

  173. 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?

  174. 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?

  175. 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.

  176. 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.

  177. “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.””

    I don’t know where that doctor got that. The majority of autistic kids don’t have any major gut problems. There is a slight increase in problems with digesting sugars like lactose and fructose, and those kids might benefit from digestive enzymes (that comes from Dr. Buie who dismissed the parents’ quack mail-order lab reports in the Canadian article I linked to earlier) . Of the autistic kids with real digestive problems the majority have constipation. Autistic kids with diarrhea might be very stressed, as stress causes diarrhea (and constipation) and besides that most normal kids have lots of gut problems like diarrhea and constipation.

    http://autismdiva.blogspot.com/2007/04/stress-causes-tummy-trouble.html

    Autism is not diarrhea, and treating gut problems does NOT cure autism, though it might make an autistic kid feel 10 times better so that he can engage with the world better, the same as treating it would help a typical kid engage with the world better.

    Wide-set downward slanting eyes and a ridge down the center of the forehead and your son’s kind of mouth are not found in typical people, if your husband’s father had them, then he either was affected by a teratogen in early development or he has a genetic problem, too.

    It’s like your son is a walking poster for a glitch in part of his embryonic development. I don’t know how to say it any plainer. I’m not an MD but I do have a recent bachelors degree in psychology from UCD where I took courses in developmental psych and neurodevelopmental psych and brain structure. I have more background in this stuff than the average Joe, partly because my child has a dysmorphic face, and so do I (wide set eyes) and that is in my father’s family along with the Asperger’s characteristics. I’m a dysmorphology geek. If I were you, I’d go ask a geneticist with a specialty in dysmorphology to give you an opinion, because maybe the other guys were afraid to tell you what they saw.

    I’m happy the GFCF diet worked for your son, but autism comes from early brain wiring not from food allergies, contrary to popular opinion.

    http://jmg.bmj.com/cgi/content/abstract/jmg.2007.049312v1
    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16980810&query_hl=1&itool=pubmed_docsum

    These two papers give an idea of how common undiagnosed specific genetic disorders are in “autism”. Some very subtle kinds of genetic defects are not tested for and so parents don’t know what the genetic problem is that their kid has. They just know “autism.” Which is not helpful, in my opinion.

    For the geeks out there… I’m a second cousin once removed of Jim Clark, co-founder of Netscape and Silicon Graphics… his father and my father were first-cousins both shared a Clark grandfather, who was probably Aspergersish and a mildy dysmorphic man. (I have that guy’s photo, degeurotype, or whatever)

  178. “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.””

    I don’t know where that doctor got that. The majority of autistic kids don’t have any major gut problems. There is a slight increase in problems with digesting sugars like lactose and fructose, and those kids might benefit from digestive enzymes (that comes from Dr. Buie who dismissed the parents’ quack mail-order lab reports in the Canadian article I linked to earlier) . Of the autistic kids with real digestive problems the majority have constipation. Autistic kids with diarrhea might be very stressed, as stress causes diarrhea (and constipation) and besides that most normal kids have lots of gut problems like diarrhea and constipation.

    http://autismdiva.blogspot.com/2007/04/stress-causes-tummy-trouble.html

    Autism is not diarrhea, and treating gut problems does NOT cure autism, though it might make an autistic kid feel 10 times better so that he can engage with the world better, the same as treating it would help a typical kid engage with the world better.

    Wide-set downward slanting eyes and a ridge down the center of the forehead and your son’s kind of mouth are not found in typical people, if your husband’s father had them, then he either was affected by a teratogen in early development or he has a genetic problem, too.

    It’s like your son is a walking poster for a glitch in part of his embryonic development. I don’t know how to say it any plainer. I’m not an MD but I do have a recent bachelors degree in psychology from UCD where I took courses in developmental psych and neurodevelopmental psych and brain structure. I have more background in this stuff than the average Joe, partly because my child has a dysmorphic face, and so do I (wide set eyes) and that is in my father’s family along with the Asperger’s characteristics. I’m a dysmorphology geek. If I were you, I’d go ask a geneticist with a specialty in dysmorphology to give you an opinion, because maybe the other guys were afraid to tell you what they saw.

    I’m happy the GFCF diet worked for your son, but autism comes from early brain wiring not from food allergies, contrary to popular opinion.

    http://jmg.bmj.com/cgi/content/abstract/jmg.2007.049312v1
    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16980810&query_hl=1&itool=pubmed_docsum

    These two papers give an idea of how common undiagnosed specific genetic disorders are in “autism”. Some very subtle kinds of genetic defects are not tested for and so parents don’t know what the genetic problem is that their kid has. They just know “autism.” Which is not helpful, in my opinion.

    For the geeks out there… I’m a second cousin once removed of Jim Clark, co-founder of Netscape and Silicon Graphics… his father and my father were first-cousins both shared a Clark grandfather, who was probably Aspergersish and a mildy dysmorphic man. (I have that guy’s photo, degeurotype, or whatever)

  179. I was (and still somewhat is) quite close to quitting my job as a software architect to take care of my 3 year old who is autistic. This story has given me some more strength to see if I can realistically balance work and life. Sridhar is right in one aspect – things that used to keep me worried at work no longer worry me when I go home (though my worries are no way comparable to competing with MS and Google:-))

    Thanks Scoble

  180. I was (and still somewhat is) quite close to quitting my job as a software architect to take care of my 3 year old who is autistic. This story has given me some more strength to see if I can realistically balance work and life. Sridhar is right in one aspect – things that used to keep me worried at work no longer worry me when I go home (though my worries are no way comparable to competing with MS and Google:-))

    Thanks Scoble

  181. Actually Julia I’m not going to “agree to disagree” because you’re just simply wrong and you do not have the backing of medical science. Someone can be autistic and have health issues, but those health issues are not part of the how the DSM determines autism and you cannot change it. As far as I’m concerned, you and JB and Sridhar are newbies. Anti-virals? Did those in the 90s. We were doing what I suppose would be termed ‘biomed’ years ago.

    In fact the first health issue discovered was what Ms Clark referenced with the allergy or intolerance toward sugars (specifically lactose and fructose). Further, it appears we’ve actually been forced to deal with more health issues than you have. But recovery from health issues does not make an autie become an NT.

    Perhaps your son presented with “autistic features” and, like many, was given a diagnosis in order to obtain services? I wouldn’t count the Regional Center (Lanterman?) or School District (PUSD?) as actually being able to truly diagnose as both of those entities are fraught with too many conflicts of interest (in my long experience with both).

    As for your being brought up on neglect charges, I’ve gotta really wonder how that would’ve occurred given the “head of Pediatric GI at another large LA hospital” didn’t appear to think your son was in need of treatment.

    Sorry, but I wouldn’t want to post the names of the local docs you asked about because of my concern about their being bothered (not by you, please understand, but by someone else in the ‘mercury camp’).
    http://chronicle.com/free/v53/i36/36a02601.htm

    I think we could be much further ahead in autism research had it not been for those groups who’ve been so insistent it’s been the thimerosal in the vaccines. You and others who hold on to this premise are not doing anything bold, brave or cutting edge — you are just huddling together holding on to a worn-out conspiracy theory. Think about JB taking out that blasted ad in the NYT and making it appear like many well-known scientists agreed with his deranged premise: That was so extraordinarily unethical on his part and yet you permitted your son’s image to be associated with such an unethical act.

    Oh, yeah, and for all the geeks out there, like Ms Clark I’ve also got a relative in tech whom everyone would likely know. As for myself, I was in IT before it was even half-way cool. Those of us with differently wired brains are out there every where and we’re excelling in all kinds of brilliant ways. We are not making other’s lives hellish; only a bigot would think such a thing.

  182. Actually Julia I’m not going to “agree to disagree” because you’re just simply wrong and you do not have the backing of medical science. Someone can be autistic and have health issues, but those health issues are not part of the how the DSM determines autism and you cannot change it. As far as I’m concerned, you and JB and Sridhar are newbies. Anti-virals? Did those in the 90s. We were doing what I suppose would be termed ‘biomed’ years ago.

    In fact the first health issue discovered was what Ms Clark referenced with the allergy or intolerance toward sugars (specifically lactose and fructose). Further, it appears we’ve actually been forced to deal with more health issues than you have. But recovery from health issues does not make an autie become an NT.

    Perhaps your son presented with “autistic features” and, like many, was given a diagnosis in order to obtain services? I wouldn’t count the Regional Center (Lanterman?) or School District (PUSD?) as actually being able to truly diagnose as both of those entities are fraught with too many conflicts of interest (in my long experience with both).

    As for your being brought up on neglect charges, I’ve gotta really wonder how that would’ve occurred given the “head of Pediatric GI at another large LA hospital” didn’t appear to think your son was in need of treatment.

    Sorry, but I wouldn’t want to post the names of the local docs you asked about because of my concern about their being bothered (not by you, please understand, but by someone else in the ‘mercury camp’).
    http://chronicle.com/free/v53/i36/36a02601.htm

    I think we could be much further ahead in autism research had it not been for those groups who’ve been so insistent it’s been the thimerosal in the vaccines. You and others who hold on to this premise are not doing anything bold, brave or cutting edge — you are just huddling together holding on to a worn-out conspiracy theory. Think about JB taking out that blasted ad in the NYT and making it appear like many well-known scientists agreed with his deranged premise: That was so extraordinarily unethical on his part and yet you permitted your son’s image to be associated with such an unethical act.

    Oh, yeah, and for all the geeks out there, like Ms Clark I’ve also got a relative in tech whom everyone would likely know. As for myself, I was in IT before it was even half-way cool. Those of us with differently wired brains are out there every where and we’re excelling in all kinds of brilliant ways. We are not making other’s lives hellish; only a bigot would think such a thing.

  183. Ok. So you are unwilling to agree to disagree.
    We certainly aren’t going to convince one another.
    I’m not really up for more arguing.
    How shall we part our separate ways?
    Flowers? Avoidance? “dear john” letter?
    Whatever your personal preference..consider it done.

    dyslexic_angeleno wrote:
    “As for myself, I was in IT before it was even half-way cool. Those of us with differently wired brains are out there every where and we’re excelling in all kinds of brilliant ways.”

    Yes. yes you are.
    Congratulations.

  184. Ok. So you are unwilling to agree to disagree.
    We certainly aren’t going to convince one another.
    I’m not really up for more arguing.
    How shall we part our separate ways?
    Flowers? Avoidance? “dear john” letter?
    Whatever your personal preference..consider it done.

    dyslexic_angeleno wrote:
    “As for myself, I was in IT before it was even half-way cool. Those of us with differently wired brains are out there every where and we’re excelling in all kinds of brilliant ways.”

    Yes. yes you are.
    Congratulations.

  185. Autism is not a mystery. What happened is that in 1994 Fred Volkmar et al. changed its definition to include childhood schizophrenia, and Asperger’s which used to be called schizoid personality, and mental retardation. Because average paternal age is so high sporadic “autism” was bound to drastically increase. The research on the fact that severe autism is the ultimate autoimmune disorder explains the dramatically horrible reaction the kids have to vaccinations. One can have an autistic child if the mother had an older father when she was born. Also a family history of type 1 diabetes, Hashimoto’s, and other autoimmunes is a strong risk factor for autism. Any family history of any Austism Spectrum Disorder or schizophrenia is a very strong risk factor. New research says that a family history of ADHD, obsessive compulsive disorder etc. are risk factors too. Meanwhile paternal age keeps rising and so will autism rates. http://autism-prevention.blogspot.com/

  186. Autism is not a mystery. What happened is that in 1994 Fred Volkmar et al. changed its definition to include childhood schizophrenia, and Asperger’s which used to be called schizoid personality, and mental retardation. Because average paternal age is so high sporadic “autism” was bound to drastically increase. The research on the fact that severe autism is the ultimate autoimmune disorder explains the dramatically horrible reaction the kids have to vaccinations. One can have an autistic child if the mother had an older father when she was born. Also a family history of type 1 diabetes, Hashimoto’s, and other autoimmunes is a strong risk factor for autism. Any family history of any Austism Spectrum Disorder or schizophrenia is a very strong risk factor. New research says that a family history of ADHD, obsessive compulsive disorder etc. are risk factors too. Meanwhile paternal age keeps rising and so will autism rates. http://autism-prevention.blogspot.com/

  187. “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 “avoid confusion” with them?

    Do you realize that “high functioning autism” officially means “autistic disorder” with an IQ above 70, and that most people with “autistic disorder” (including those often labeled low-functioning with standard IQ tests) seem to have an IQ over 70 if measured with the proper testing, and are therefore classifiable as “high functioning”?

    Not that I subscribe to the HFA/LFA dichotomy at all (it would require that I split myself in half, among other things) but it’s good to know what you’re talking about, and “HFA” is “autistic disorder,” not some other diagnosis.

  188. “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 “avoid confusion” with them?

    Do you realize that “high functioning autism” officially means “autistic disorder” with an IQ above 70, and that most people with “autistic disorder” (including those often labeled low-functioning with standard IQ tests) seem to have an IQ over 70 if measured with the proper testing, and are therefore classifiable as “high functioning”?

    Not that I subscribe to the HFA/LFA dichotomy at all (it would require that I split myself in half, among other things) but it’s good to know what you’re talking about, and “HFA” is “autistic disorder,” not some other diagnosis.

  189. My son has NOT got a dysmorphic face, wide set eyes, or a mother whose ‘father was older’ etc.!!! I was young when I had him and he has no obvious genetic predisposition – no one in the family has ASD. However, together with his diagnosis of ASD (Asperger’s Syndome)he does have gut, intestinal and dietary problems. He also shows all the hallmarks of being unable to properly detoxify and of toxic poisoning. Strict changes to his diet and the killing of excessive build up of yeast in digestive system has returned him to almost ‘normal’ behaviour and attentiveness. Considering his high IQ I do not think his problem is dysmorphic. Considering the vast improvements in condition, appearance and behaviour when treated for physical symptoms I think it is highly likely that ASD is caused by environmental, vaccine or dietary factors. I sometimes wonder whether ASD also involves a physical and mental response to stress/abuse/trauma – my son was once abused by someone – and abuse/stress/trauma to children has, like ASD, become more widespread during the last generation. Abuse/stress/trauma often causes mental and developmental regression, difficulty understanding personal space, difficulty interacting empathetically with others and behavioural problems. I would not be surprised if it also has a physical toll. Counselling is a main GP reccommendation and success story in ASD treatment these days. It helps these children understand and deal with their feelings.

  190. My son has NOT got a dysmorphic face, wide set eyes, or a mother whose ‘father was older’ etc.!!! I was young when I had him and he has no obvious genetic predisposition – no one in the family has ASD. However, together with his diagnosis of ASD (Asperger’s Syndome)he does have gut, intestinal and dietary problems. He also shows all the hallmarks of being unable to properly detoxify and of toxic poisoning. Strict changes to his diet and the killing of excessive build up of yeast in digestive system has returned him to almost ‘normal’ behaviour and attentiveness. Considering his high IQ I do not think his problem is dysmorphic. Considering the vast improvements in condition, appearance and behaviour when treated for physical symptoms I think it is highly likely that ASD is caused by environmental, vaccine or dietary factors. I sometimes wonder whether ASD also involves a physical and mental response to stress/abuse/trauma – my son was once abused by someone – and abuse/stress/trauma to children has, like ASD, become more widespread during the last generation. Abuse/stress/trauma often causes mental and developmental regression, difficulty understanding personal space, difficulty interacting empathetically with others and behavioural problems. I would not be surprised if it also has a physical toll. Counselling is a main GP reccommendation and success story in ASD treatment these days. It helps these children understand and deal with their feelings.

  191. I just wanted to write a quick note and let you know that we have set up a community blogging, discussion, and community knowledge sharing web site at http://www.soaringhorse. com. Any member of the Autism community may easily set up a blog, participate in discussions, and document their knowledge, for the benefit of all.

    I hope you will take the time to visit, register, and participate. It is totally free to do so. While it is early days and our community is just getting going, we have heard again and again that there is a
    requirement for such a site, so we have taken the plunge, and it’s doors are now open to you. We hope you find it a useful addition tothe community efforts already under way here.

    If you have any questions about this community site, or suggestions on how to make our community better, please do not hesitate to contact me directly at the coordinates below.

    Thanks

    malcolm

  192. I just wanted to write a quick note and let you know that we have set up a community blogging, discussion, and community knowledge sharing web site at http://www.soaringhorse. com. Any member of the Autism community may easily set up a blog, participate in discussions, and document their knowledge, for the benefit of all.

    I hope you will take the time to visit, register, and participate. It is totally free to do so. While it is early days and our community is just getting going, we have heard again and again that there is a
    requirement for such a site, so we have taken the plunge, and it’s doors are now open to you. We hope you find it a useful addition tothe community efforts already under way here.

    If you have any questions about this community site, or suggestions on how to make our community better, please do not hesitate to contact me directly at the coordinates below.

    Thanks

    malcolm

  193. Very true. Not just for parents of autistic kids but for anyone who have seen pain and suffering of people they truly care about, office and business appears to be trivial and easy. Nothing compares with the trauma of personal life.

  194. Very true. Not just for parents of autistic kids but for anyone who have seen pain and suffering of people they truly care about, office and business appears to be trivial and easy. Nothing compares with the trauma of personal life.

  195. […] the hotly debated link between vaccines and autism spectrum disorder–after reading “My Parental Heroes” by Robert Scoble. I’ve since read a number of books and countless articles on the […]