Scobleizer - Latest Comments in My Parental Heroes

Re: My Parental Heroes

Sam — Thu, 05 Jun 2008 06:29:40 -0000

It's a very good article. This give hope for many parents.

Re: My Parental Heroes

angsuman — Mon, 03 Sep 2007 15:43:09 -0000

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.

Re: My Parental Heroes

malcolm stanley — Thu, 21 Jun 2007 08:56:42 -0000

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 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

Re: My Parental Heroes

Claire — Sat, 19 May 2007 04:14:56 -0000

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.

Re: My Parental Heroes

Amanda — Thu, 17 May 2007 13:05:55 -0000

"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.

Re: My Parental Heroes

Les — Sat, 12 May 2007 17:25:02 -0000

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.bl...

Re: My Parental Heroes

Baxter's mom — Fri, 11 May 2007 02:00:29 -0000

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.

Re: My Parental Heroes

dyslexic_angeleno — Fri, 11 May 2007 01:06:11 -0000

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/v...

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.

Re: My Parental Heroes

Babu — Thu, 10 May 2007 23:57:46 -0000

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

Re: My Parental Heroes

Ms. Clark — Thu, 10 May 2007 16:15:59 -0000

"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....

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/cont...
http://www.ncbi.nlm.nih.gov...

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)

Re: My Parental Heroes

baxter's mom — Thu, 10 May 2007 08:49:49 -0000

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.

Re: My Parental Heroes

dyslexic_angeleno — Thu, 10 May 2007 00:55:20 -0000

Julia:

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

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

Re: My Parental Heroes

Ms. Clark — Thu, 10 May 2007 00:08:39 -0000

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

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

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

http://autismdiva.blogspot....

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

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

Julia your kid has the exact appearance of a kid with a genetic disorder. I'm sorry if that hurts your feelings. His face and head are a record of his early development, that's the truth. It's possible that there was something that interfered with his development very early in the embryonic stage, it's possible there was a teratogen that got to him, but I'm sorry that kid's face is way not normal. He has a ridge down the center of his forehead like I have never seen in another kid, ever, that and his eyes are wide set and downward tilted at the outside edge. Whatever affected his development may also have affected his guts. I don't know what would be so heinous about admitting that.
http://www.autismvancouver2...
The photo of Baxter that was put in the NYT in the full page add showed his dysmorphology quite plainly. Excuse me for pointing out the painfully obvious, Julia. He's still cute! OK? He's a cute boy! He's also got a dysmorphic face.

Re: My Parental Heroes

Baxter's mom — Wed, 09 May 2007 23:31:01 -0000

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

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

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

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

AGAIN (AGAIN!!!!!!!!!!) your "autism" was not my "autism."

WAS
being the operative word.

Re: My Parental Heroes

Ms. Clark — Wed, 09 May 2007 18:33:14 -0000

For perspective:
JB Handley's Generation Rescue site is listed as a crank site on Crank.net.
http://www.crank.net/medici...
It's also found on the ratbags site http://ratbags.com/rsoles/l...

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

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

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

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

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

It's politics. Hello! Politics.

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

http://autismdiva.blogspot....

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

Kerry, who killed Abubakar is a DAN! doctor in good standing
http://autismdiva.blogspot....

http://autismdiva.blogspot....

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

Re: My Parental Heroes

TheProbe — Wed, 09 May 2007 15:28:25 -0000

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

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

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

Re: My Parental Heroes

Elisabeth E — Wed, 09 May 2007 14:04:45 -0000

Susan, Kev and all others on this blog--

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

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

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

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

Best wisshes to every family with children on the spectrum.

Re: My Parental Heroes

Do'C — Wed, 09 May 2007 13:43:40 -0000

Will the real JB Handley please stand up?
http://www.kevinleitch.co.u...
http://www.kevinleitch.co.u...
http://scienceblogs.com/ins...
http://www.autismstreet.org...

Re: My Parental Heroes

Ms. Clark — Wed, 09 May 2007 13:04:24 -0000

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

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

http://www.theglobeandmail....

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

Re: My Parental Heroes

Umesh — Wed, 09 May 2007 10:41:34 -0000

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

Re: My Parental Heroes

malcolm stanley — Tue, 08 May 2007 22:46:47 -0000

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

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

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

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

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

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

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

/malcolm

Re: My Parental Heroes

Eowyn — Tue, 08 May 2007 17:06:27 -0000

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

Re: My Parental Heroes

JB Handley — Tue, 08 May 2007 13:44:20 -0000

Wow.

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

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

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

http://www.generationrescue...

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

http://www.generationrescue...

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

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

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

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

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

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

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

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

I like the old Kev better!!

JB Handley
Generation Rescue

Please note: Nasty insulting posts guaranteed to follow!!

Re: My Parental Heroes

Baxter's mom — Tue, 08 May 2007 12:58:23 -0000

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

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

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

Re: My Parental Heroes

monk.e.boy — Tue, 08 May 2007 05:21:18 -0000

"As for monk.e.boy, he has to live with himself."

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

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

Awareness = nothing.
Help = something.

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

So I have to live with myself.