My Parental Heroes

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

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

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

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

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

He told me some things that blew my mind:

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

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

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

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

223 thoughts on “My Parental Heroes

  1. 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.

  2. 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.

  3. 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

  4. 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

  5. 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.

  6. 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.

  7. “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.

  8. “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.

  9. 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/

  10. 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/

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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

  16. 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

  17. “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)

  18. “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)

  19. 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.

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