PBS Newshour: Robert MacNeil Looks At Autism Prevalance

Another good report from MacNeil on the diversity seen in our kids and showing that the speculation that autism has always been with us is speculation (Grinker) and that those with experience know that what is happening is new.

Watch the full episode. See more PBS NewsHour.

Shenanigans at the IACC

The Combating Autism Act of 2006 set aside almost a billion dollars for autism research, some of which was to go to environmental causes, some of which were to be vaccine research.

CAA created the Interagency Autism Coordinating Committee, to be made up of both federal officials and members of the public to put together a strategic plan deciding who would get the money to research what.

We got a good idea that the fix was in when Joyce Chung, wife of Roy Grinker, autism epidemic denier, was appointed the committee coordinator, and Thomas Insel, committee head, began making decisions to cancel chelation research (claiming that chelation procedures that are currently the standard of care for metal toxicity and have been so for the last half a century, were suddenly too dangerous to be tested on children with autism.)

Our suspicions were confirmed last week when, after giving the thumbs up to vaccine research in the previous meeting, a surprise revote was held, and the IACC decided to reverse itself and decided that vaccine research into the causes of autism was not necessary.

And it is not just the revote itself that stinks to high heaven, but stories of individual dramas surround the revote are coming to light, most notably Alison Singer's decision to resign from her VP position at Autism Speaks the night before the surprise revote because she knew that she was going to have to vote in opposition to the AS's stance that vaccine research is needed. But wait... if the revote was a surprise... how did Alison know the night before that the vote was coming and that it would be on the topic that it was on and that she would be voting the way she would and that AS would not like it?

What did Alison know and when did she know it?

And is Alison being given any incentives, financial or otherwise, to vote thusly? I mean quitting a six figure income job as VP in the biggest autism org in the world over one vote is quite a step, especially in this economy. She has been dining with Paul Offit and Every Child by Two was the first to run her press release on leaving AS. Merck funds Offit and Wyeth funds ECBT. Is Pharma money making its way into Alison's bank account in exchange for her vote to kill research into whether or not vaccines cause autism?

And wouldn't that be a criminal offense?

Today we learned that Generation Rescue and some friends have been tracking a large number of shenanigans that have been going on at the IACC, and that legal inquires may be on the horizon. Turns out that the committee is not being run by the rules. Shocker right?

The Federal Advisory Committee Act sets the rules on how federal advisory committees, (which IACC is) are to be run. Makeup, prior notices, input, disclosures and the like. But apparently Insel's IACC is above these rules and can just do what it likes.

Stay tuned... this is going to get interesting.

UPDATE: Katie's pissed.

It Just Keeps Getting More Absurd

So apparently the woman hired by NIMH to coordinate the attack on the autism epidemic, may not believe that there is an autism epidemic.

The new head of the Interagency Autism Coordinating Committee(IACC)is Joyce Chung, who is the wife of Roy Grinker, who wrote a book and tours the nation, claiming there is no autism epidemic.

I feel like I am taking crazy pills.

So are the bajillions of dollars in CAA money now going to research that proves Grinker's head in the sand theory is true, rather than actually looking for the causes and cures of autism?

A year or so before I became a mom, me and 4 of my friends started a prayer group/bible study type thing. Two of the five of us now have autistic sons. Another has a daughter with severe autoimmune disorder.

When I was in Jr. High my best friends were identical twins that lived next door, two of the three of us have autistic sons. The third has a son with a severe autoimmune disorder.

I am wondering what the stats would be for my groups of girlfriends gone by if I tried to get back in touch with all of them.

But Autism Speaks and now NIMH are propping up proponents of the idea that there is no epidemic.

All I can think of is sarcastic comments to make, so I will just stop here and let Wade, the voice of reason, and JB, the voice of pissed off parents everywhere, take over.

Full Disclosure in Correcting My Error In Writing About Other's Errors

Last week David Kirby posted this HuffPo piece. I posted it to my site.

A short time later, Mr. Kirby posted this to the EOH list, outing well known autism author, Roy Richard Grinker, Ph. D., as someone who was posting anonymously in the comments section.

RE: This comment on Huffpost:

“Unfortunately, Mr. Kirby continues to believe that California's DDS enrollment figures constitute epidemiological data. They do not. The author even makes a claim about statistical significance! He also introduces a new term into the discussion -- "full spectrum" -- (which he suggests is equivalent to Autistic Disorder) -- and states that the DDS counts only Autistic Disorder, not PDD-NOS, or Asperger's, or Down's Syndrome children with autism, or any other phenotype. This is absolutely wrong. Not even the best epidemiological studies are particularly good at distinguishing among the subtypes. It is truly disappointing to see the Huffington Post continue to publish phony epidemiology.”

Signed: Mfano

But “backstage” I see that his email is actually rgrink@gwu.edu

If Dr. Grinker would like to debate this subject out in the open, using his real name, I would be more than happy to take part. You would think that someone of his stature would have more pressing things to do with George Washington University’s time and bandwidth than send anonymous, erroneous comments to national political blogs.

I also posted this to my site.

A list member on the Evidence of Harm list noted that Dr. Grinker has a habit of posting anonymously to talk about his own work.

Update: From "celiacdaughter" on the EOH list:
...If you search some of his (Mfano) previous posts you will also note that he enjoys using the third person when discussing himself:

"So Foresam, tell us: how Grinker should look for autistic adults? The woman Grinker and Chew wrote about in the blog wasn't on record anywhere as autistic. Grinker doesn't say, but she probably bit herself and smeared feces too. No one missed her. She was called mentally retarded and given lots of treatment and care. She just wasn't called autistic"...

I also posted this to my site.

Then a little while later, Mr. Kirby announced that he had inadvertently broken the HuffPo privacy policy in making the information public and apologized for the breach.

Dear List members

I have been informed by the editors of the Huffington Post that it is against the rules to reveal the identity of people who post comments on the blog.

I was not aware of that rule.

I apologize to Huffpost and, particularly, to Dr. Grinker, for the violation. Please do not attempt to contact him directly. He made his comment in the full belief that his identity would not be revealed, and we all need to respect that decision.

Again, my apologies to everyone.

David

I did not see the post.

Kristina Chew Ph. D. wrote to me and asked that I remove the information on Dr. Grinker. Dr. Chew is a co-author of Dr. Grinker.

I checked the EOH list and found Mr. Kirby’s apology. And sent her this reply.

Hi Kristina,

I just read all this and am genuinely unsure of what to do here.

Let me think about this.

Ginger

As I was thinking about the ethics involved, an email arrived from Mr. Kirby arrived asking me to remove the information in deference to Dr. Grinker.

I then decided to remove the information in an attempt to “keep the peace”.

Dr. Chew noted that I had forgotten to remove Dr. Grinker's name from the labels, so I did.

I also removed four comments from the post that referred to the deleted information as they only served to pique one's interest in the deleted information.

kristina has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

In your "update," you quote David Kirby's message on the EoH Yahoogroups List in which he revealed Roy Richard Grinker's identity, as well as some additional messages from the EoH Yahoogroups List on this matter. Mr. Kirby's revelation of Prof. Grinker's identity was a violation of the policy of the Huffington Post. It is therefore inappropriate for the EoH messages to still appear on your blog.

Thank you very much.
Kristina Chew
Auitm

Sincerely,
Kristina Chew
http://www.autismvox.com

kristina has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Thanks very much, Ginger. As you've removed the update, perhaps it might also be possible to remove the tag for Roy Grinker? Best wishes from Kristina Chew

autismvox.com

Posted by kristina to Adventures in Autism at 7:07 PM

Camille has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Any comment on the way David Kirby outed the commenter he didn't agree with to the EoHarm yahoo! group?

Do you think it's OK that he outed an anonymous commenter? I guess you did because you posted the details of the outing here, approvingly.

Do you think Kirby ought to apologize to Grinker in public? Do you think Arianna needs to apologize for bamboozling her commenters into thinking they were anonymous to the bloggers?

Posted by Camille to Adventures in Autism at 12:17 AM

Ginger has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Well Camille, commenting on all that would kinda defeat the point of taking it down, now wouldn't it?

Posted by Ginger to Adventures in Autism at 9:11 AM

After reading discussion of the incident today, I realized that I had fallen into the same trap that I accuse main stream media of doing, making editorial decisions based on politics. I have replaced all the information so everything is back on the record.

I should not have taken the information down.

I apologize for doing it.

Today I reposted the information and sent the following email to Kristina Chew, Roy Grinker and David Kirby:

At the request of Dr. Chew and Mr. Kirby (who related Dr. Grinker's wish), the information on Dr. Grinker's anonymous posting on HuffPo was removed from my site. I was very reluctant to do it, but did so to keep the peace and try to honor the requests of those involved.

After seeing the fall out from my decision, it is apparent to me that my choice was a poor one and I have corrected it by reposting the information. I will be following it up with a discussion of the matter in a separate post. All of this information is relevant to the autism debate, Dr. Grinker's deception, Mr. Kirby's breaking of HuffPo rules (unknowingly or not), Mr. Kirby's public apology, Dr. Grinker's lack of any kind of mea culpa (as far as I know), Mr. Kirby's and Dr. Chew's request to have the information taken down, and my poor choice to self-censor after the fact.

One of my central complaints in the autism debate is the strangle hold on information that prevents the public from making informed choices on who to trust and what advice to take. When I removed the information I violated my own policy and took part in something that I have been criticizing for three years.

If any of us are to be of help to those with autism and their families, openness, transparency and integrity are essential. To be as frank as I can be, everyone needs to stop worrying about their bull shit reputations and do the right thing. If you make a mistake, then apologize and clean up your mess as best you can and face the consequences.

Any of us with letters after our name or books on autism don't have the maturity to do that, then we should not be a part of this discussion. Too many people's lives depend on its outcome.

Sincerely,
Ginger Taylor, M.S.

I try to run an honest blog, I have tried to be as open and transparent as I have challenged others to be. I will work harder to maintain that standard in the future.

I am sorry for the lapse in judgment.