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.
May 4th, 2007 at 1:08 am
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.
May 4th, 2007 at 1:23 am
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…
May 4th, 2007 at 1:30 am
Thanks for sharing..
May 4th, 2007 at 1:31 am
Good post Robert . Here in Cambridge UK we have a leading expert in Autism, Simon Baron-Cohen, http://en.wikipedia.org/wiki/Simon_Baron-Cohen (Interesingly a cousin of Sacha Baron-Cohen) maybe next time you are over you could interview him - or even do it on the phone.
May 4th, 2007 at 1:31 am
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.
May 4th, 2007 at 1:46 am
A video I did on this subject. Perhaps it should be passed around that community?
http://www.rockvideos.us/voicesalex.htm
Rocky-
Scoble Show Editor
May 4th, 2007 at 1:55 am
Very touching.
May 4th, 2007 at 2:21 am
A good explanation of autism in Silicon Valley — http://www.wired.com/wired/archive/9.12/aspergers_pr.html
May 4th, 2007 at 3:06 am
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
May 4th, 2007 at 3:15 am
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.
May 4th, 2007 at 3:24 am
[...] well-known tech blogger and podcaster (and soon-to-be-parent) now facing parenthood, recently spoke to Sridhar Vembu, CEO of Zoho. As it turns out, Vembu is the father of a boy with autism. and reminds us of [...]
May 4th, 2007 at 3:54 am
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.
May 4th, 2007 at 4:04 am
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.
May 4th, 2007 at 4:44 am
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
May 4th, 2007 at 4:45 am
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.
May 4th, 2007 at 5:01 am
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
May 4th, 2007 at 5:08 am
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.
May 4th, 2007 at 5:08 am
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.
May 4th, 2007 at 5:09 am
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.
May 4th, 2007 at 5:10 am
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.
May 4th, 2007 at 5:33 am
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
May 4th, 2007 at 5:55 am
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
May 4th, 2007 at 6:25 am
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
May 4th, 2007 at 8:06 am
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…
May 4th, 2007 at 8:20 am
Thank you for this great post.
May 4th, 2007 at 9:03 am
Great post Robert!
I’m too a father of an autistic child, and I find blogging a great way to express my feeling: http://www.ensimismo.com (it’s in spanish).
But for a great blog on autism, I recommend: http://www.autismvox.com by Kristina Chew, PhD.
Thank you, Eduardo.
May 4th, 2007 at 9:12 am
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? :)
May 4th, 2007 at 9:23 am
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.
May 4th, 2007 at 9:41 am
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
May 4th, 2007 at 10:03 am
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…
May 4th, 2007 at 10:13 am
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
May 4th, 2007 at 10:31 am
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.
May 4th, 2007 at 11:36 am
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.
May 4th, 2007 at 11:57 am
Robert: This is probably one of your best posts. Ever. Thanks for sharing.
May 4th, 2007 at 12:14 pm
Here is one of my favourite bloggers, a surgeon who often writes about the mercury/vaccination/autism nonsense.
http://scienceblogs.com/insolence/medicine/autism/
May 4th, 2007 at 12:18 pm
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.
May 4th, 2007 at 1:23 pm
[...] Scoble makes this point implicitly, but very well, in this post about Zoho CEO Sridhar Vembu and his autistic [...]
May 4th, 2007 at 1:39 pm
@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
May 4th, 2007 at 3:50 pm
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.
May 4th, 2007 at 4:01 pm
@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).
May 4th, 2007 at 4:53 pm
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. :-)
May 4th, 2007 at 6:25 pm
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.
May 4th, 2007 at 6:30 pm
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!
May 5th, 2007 at 12:40 am
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.
May 5th, 2007 at 3:40 am
[...] a post interview chat with Sridhar Vembu, the CEO of Zoho, the discussion turned to Sridhar’s autistic son and how challenging it is to raise a child with the disease. The number of cases of autism seems to [...]
May 5th, 2007 at 5:30 am
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.
May 5th, 2007 at 6:14 am
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.
May 5th, 2007 at 6:33 am
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.
May 5th, 2007 at 6:36 am
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.
May 5th, 2007 at 10:21 am
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.
May 5th, 2007 at 11:27 am
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.
May 5th, 2007 at 12:11 pm
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.
May 5th, 2007 at 12:34 pm
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!
May 5th, 2007 at 2:19 pm
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
May 5th, 2007 at 2:24 pm
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.
May 5th, 2007 at 3:31 pm
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.
May 5th, 2007 at 4:51 pm
“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.
May 5th, 2007 at 5:33 pm
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.
May 5th, 2007 at 6:09 pm
>#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.
May 5th, 2007 at 7:29 pm
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.
May 5th, 2007 at 7:56 pm
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.
May 5th, 2007 at 8:15 pm
#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.
May 5th, 2007 at 8:20 pm
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.
May 5th, 2007 at 8:41 pm
#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.
May 5th, 2007 at 8:46 pm
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.
May 5th, 2007 at 8:58 pm
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.
May 5th, 2007 at 9:18 pm
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
May 5th, 2007 at 10:15 pm
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
May 5th, 2007 at 11:56 pm
[...] “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? [...]
May 6th, 2007 at 12:07 am
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.
May 6th, 2007 at 3:21 am
[...] Robert Scoble: I appreciated your blog post about autistic children, and know that just by blogging it, awareness will be raised. However, I really hope that [...]
May 6th, 2007 at 7:23 am
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.
May 6th, 2007 at 8:22 am
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.
May 6th, 2007 at 8:28 am
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.
May 6th, 2007 at 10:30 am
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.
May 6th, 2007 at 3:20 pm
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
May 6th, 2007 at 3:47 pm
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?
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.
May 6th, 2007 at 5:24 pm
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
May 6th, 2007 at 5:54 pm
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.
May 6th, 2007 at 6:14 pm
Half a Million Kids in the US Have Autism
May 6th, 2007 at 10:30 pm
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
May 7th, 2007 at 1:09 am
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.
May 7th, 2007 at 7:19 am
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.
May 7th, 2007 at 9:33 am
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
May 7th, 2007 at 10:07 am
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.
May 7th, 2007 at 11:14 am
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 havenR