January 16, 2008

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.

21 comments:

mike stanton said...

You said,
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.


Wow! Does that mean religion causes autism?

Or would that be too silly? A bit like suggesting that a women with a distinguished professional career in medicine has been appointed to a prestigious position on a government committee in order to parrot her husband's point of view?

Ginger said...

Yes Mike, Religion causes autism. That was totally the point I was making.

Can we dispense with the sarcasm now?

Parroting is not the suggestion.

Married people most often agree on the big issues in their lives. That is what makes James Carville and Mary Matalin's marriage such a big deal. They are one of the rare exceptions to the rule.

The focus of Grinker and Chung's professional careers is autism. One of the main focuses of their personal life (presumably)is autism as their only child is autistic.

What are the chances that they disagree on Roy's stated theory? How shocked would you be to find out that Grinker's wife is a curbie?

If they did disagree, do you think their marriage would have survived his book tour? That is kind of a big point to agree to disagree on.

If they did disagree.. again.. don't you think we would know that by now?

If they are autism's odd couple, like Carville and Matalin, that would be fascinating, but until she says different, the VERY reasonable assumption is going to be that she is on board with Grinker's line of thought.

So give her a call and ask her?

mike stanton said...

Ginger,

they have two children. That is in Richard Grinker's book. Have you read it?

Dr Chung's professional focus was not on autism but on AIDS. Dr Grinker's focus has only recently turned to Autism. Apart from his book, which was part memoir, part anthropological discourse, his academic contribution is limited to an as yet unpublished epidemiological study in South Korea.

Handley and Rankin clearly believe that Chung is going to run IACC according to Grinker's agenda. Even if she agrees with her husband 100 per cent, it is odious to suggest that she will let her personal views override her professional duty in her new post.

Instead of prejudging her on the basis of her alleged beliefs and motivations, why not wait and see how she performs her duties and judge her on that?

Has it not occured to any of you in the mercury camp that professional integrity and personal morality might govern the actions of those with whom you disagree? If you always assume the worst in us we may come to believe that that is because you are judging us by your own standards.

Ginger said...

"they have two children."

I stand corrected.

"That is in Richard Grinker's book. Have you read it?"

Have not. Will not. I have read enough to find that I don't think it is worth the investment of my limited time. I have lots of other things that would be more constructive reading for me. I reject his premise that things are always as they have been with autism. Don't respect him personally for his 'commenting under an alias' in the autism community online, then throwing a fit when he was outed.

"Dr Chung's professional focus was not on autism but on AIDS."

Which makes it more curious that she was chosen for this position.

"Handley and Rankin clearly believe that Chung is going to run IACC according to Grinker's agenda."

Then clarify that with them.

"Even if she agrees with her husband 100 per cent, it is odious to suggest that she will let her personal views override her professional duty in her new post."

I think "odious" is a stretch. That is pretty much the way people work. Especially in the medical profession. People are hired for their school of thought as much as for their raw talent.

And frankly, that has been the behavior of the medical establishment's behavior towards autism since the days of Bettelheim.

"Instead of prejudging her on the basis of her alleged beliefs and motivations, why not wait and see how she performs her duties and judge her on that?"

I am not so much prejudging her, as I am NIMH. They HAD to know that this appointment would at the very least raise a few eyebrows, if not sent parents through the roof once again.

If I am going to make a potentially explosive appointment in such a volatile arena as autism research, when a billion dollars, or so and 1 in 150 children or so, hang in the balance, and I earnestly believe that this was the best possible appointee for all parties involved, then I might consider issuing a press release saying, 'yes she is married to Grinker the Epidemic Denier, but don't judge yet because this really is a good appointment because.....".

I am thinking by the fact that the CDC blackened her name out of the documents they were hoping no one would notice.

I am very harshly judging CDC, NIMH, IACC. I am trying to think of who might be a worse appointment, that would set off parents like me more... Fombonne, Offit and perhaps Grinker himself. It is a short list.

"Has it not occurred to any of you in the mercury camp"

A small request, will you not just simplify the whole theory by calling it the 'mercury camp'? Even 'curbies' is a less annoying term.

"that professional integrity and personal morality might govern the actions of those with whom you disagree?"

The professional integrity and personal morality of a huge part the American and International medical establishment is in question by us. And those questions never get answered with any integrity.

Yes Mike... I am cynical!! I have been listening for four years to Gerberding give press conferences saying that she is just as frustrated as I am about the state of autism, while she does JACK.

How is this appointment exactly supposed to encourage me?

After watching this absurdity play out time and time again, after lip service after lip service with no results, what kind of brain dead would I have to be to see this appointment and think, "Well gosh, they have been brushing things under the rug forever, but gee whiz... I am sure that this appointment, although she has insanely close ties to someone who thinks what he thinks, well golly... I am certain that she has my son's best interests at heart and will kick into high gear research on all the stuff that has been working so well for Chandler".

"If you always assume the worst in us we may come to believe that that is because you are judging us by your own standards."

I am not sure what this sentence actually means.

I am not sure who 'us' is, but yes... absolutely yes... I have come to assume the worst in CDC, ACIP, AAP et. al. Fool me once, shame on me, fool me 4,152 times, shame on the whole system!

When random mom's like me can pick up the research that they are stamping their seals of approval on, and basing national and international health care policy on, and find holes in them big enough to drive a truck through, then there is a problem. A huge, big, fat problem.

I have been waiting... and waiting... and waiting... to see actual good faith take place in the way that they deal with parents who want REAL answers, and nothing. I have been in this for four years, and nothing.

The burden of proof in on THEM to prove to us that they are right in their stances.

Because never in my life did I ever meet someone with severely impaired speech who did not have Downs. Until the 90's. And now they are popping up in my life everywhere.

So please stop telling me that this has always been there. School systems were not going broke in the 70's and 80's trying to school this many impaired kids. Teacher working for 30 years report never having seen a child with autism for the first two thirds of their career.

It is just a silly theory.

Mike... I am sure that you did not anticipate me ranting at you, and it may well be too much, but today was the first day that I have had to actually wipe poo off my face, and I have a very low tolerance for BS today.

Stop trying to sell me a bill of goods that there is no epidemic or suggest that this appointment might signal the beginning of integrity in the way health authorities will be approaching autism and dispensing CAA funds.

I will believe it when I see it.

If she comes in and actually deals with integrity, then I will be THRILLED to eat my hat with chocolate fudge on top, do a little dance in her honor and name an entire litter of kittens 'Joyce' in her honor.

I am not heating up the fudge just yet.

I am sorry for getting so heated.

/end rant.

Wade Rankin said...

Whew. I believe the phrase I'm looking for is, "you go, girl!"

I'm sure Dr. Chung is ever so qualified in her field, which apparently isn't autism. But then again, why should we need someone with a background in autism to study the epidemic when, after all, there is no epidemic.

Ginger said...

Here, here.

... and yet another person with a background in viruses is brought in to deal with autoimmune/toxicological/GI disorder.

jonathan said...

Hi Ginger I posted this on wade's blog and I think at some point I will write an entry about this in my journal also. I wonder how you feel about the fact that Rick Rollens has gotten funding for the MIND institute at taxpayer expense (both state and federal) has funded a one million dollar study stating equivocally there is an autism epidemic and is friends with SAFEMINDS and other people who are using this study as a linchpin in their argument to litigate against vaccine companies, that Mady Horning's mouse model studies were also funded with this money that Rollens lobbies at federal level for more money. I wonder why Grinker's wife's appointment presents such an impropriety and Rollens gross conflicts of interests and use of taxpayer's money to further his own agenda and help people compile evidence to sue vaccine companies in spite of the overwhelming evidence that vaccines do not cause autism (I know you don't believe this but i am sure nothing will convince you that Chandler's autism was not caused by a vaccine so i won't try) is not an impropriety. Seems you and Wade and JB Handley and many others have a double standard.

mike stanton said...

"If she comes in and actually deals with integrity, then I will be THRILLED to eat my hat with chocolate fudge on top, do a little dance in her honor and name an entire litter of kittens 'Joyce' in her honor. "

But until then you will promote the idea that she lacks integrity. OK.

jypsy said...

"A small request, will you not just simplify the whole theory by calling it the 'mercury camp'? Even 'curbies' is a less annoying term.
"


What is the preferred term? I don't use "curbies" and, if I did, not all "curbies" would be in the "mercury camp". There must be a term you folks use and prefer?

Jose Julian said...

Hi! I'm a behavior therapist that works with autistic children. I just started my own blog at http://autismchronicles.com. I've found your blog very informative and I've added to my blogroll.

Thanks!

jypsy said...

I am (still) hoping that you, or one of your friends/colleagues will answer my honest question posed above.

Ginger said...

Sorry Jypsy... I am out of town an not checking in here as I should.

I dunno... DAN parents? Medical Model Moms? Recovery Renegades? Biomed Heads? ;)

Probably something like DAN Parents.

Ginger said...

Jonathan,

I think the difference here is that Rollens applied for and got funding to research a recognized disorder, and what we are talking about is the person who is going to be in the position to effect where the funds go.

Everyone in research has biases. And those biases are to be considered when the research is considered.

What has the potential to happen here is that hundreds of millions of dollars that parents fought to be applied to medical research that will actually have an impact on their children's health and functioning level will instead keep going to research that yields zero towards improving the quality of life for people with autism, because it may be being dispensed by someone who is not really interested in finding the causes and cures of autism.

Has anyone gotten a statement from this woman yet on where she stands on all this?

mike stanton said...

"Has anyone gotten a statement from this woman yet on where she stands on all this?"

I would have thought that the people blogging how terrible it is that Dr Chung has been appointed ought to have checked with her on where she stands before jumping to conclusions.

They might also have checked on their facts and discovered that Dr Chung does not chair these meetings. She organizes them. Dr Insel chairs them.

They might also have checked on their facts and realized that this committee does not allocate funds. It facilitates consultations with concerned and interested parties on all sides of the autism debate and those who take no side at all. Their representations are considered and incorporated in recommendations that help to shape future research priorities.

No financial decisions are made at these meetings. No research contracts are allocated. Dr Chung has done nothing to earn these attacks on her character. Has anyone apologised to "!this woman" yet.

jypsy said...

I was referring to those "in the mercury camp" only - not those looking to biomedical treatments, those who follow the DAN protocol (of which I have a copy of the original), mothers who view autism from a medical model viewpoint or those set on recovery. I meant a term for people who subscribe to the "mercury causes/is autism" theory"

thanx

Angie said...

Hi I am just a worried mommy trying to figure things out. I keep hearing things about the 18 month vaccines causing autism. My daughter is now turning 1 and am wondering what I should look out for before the next visit to the doc. Of course the doc is assuring me there is nothing to be worried about but from what I hear (which isn't a lot not personally knowing any mothers with children aflicted with autism) the 18 month shots are what soes it. My daughter already has "seizure like episodes" that we are still investigating with EEGs and the neurologists are not finding anything causing these episodes and I am scared. Have I already ruined her chances by already immunizing her? I don't have a blog to respond at but if you could take a minute and e-mail me real quick I would appreciate it. I am at breeseangel at yahoo. Please any help you could give would be great. It's difficult to weed out the crap on the internet.

Ginger said...

Mike,

I am traveling and have no phone or outgoing email. It will be another week before I will be home and can even make any calls, so until further notice, your account of the facts can stand as far as I am concerned.

And yes... as unfair as it is, she is guilty by association until proven innocent. Her marriage to Grinker and an absence of any statement distancing herself from his theory is the only evidence we have to go on. So until some kind of statement or history to the contrary comes to light (and it already may have, I am not currently in a position to look into this and my days are spent trying to manage a homesick autistic 5 year old in a hotel room) she has something to prove as far as I am concerned.

Mike you are an educator and not a parent, yes? Seeing as my hands are full for now, might you be the gracious one and try to get a statement from her or from the IACC?

Ginger said...

Jypsy,

I hate to be contrarian on this, but I think you might have your theories mixed up or be out dated.

The DAN or medical model or recovery approach is not a 'mercury=autism' theory.

There may be straight autism is always mercury poisoning people out there, but I wouldn't speak for them or presume to know what they would want to be called.

The DAN approach is that autism is not one physical syndrome, but "Autisms". Most are caused by a genetic predisposition with an environmental insult as its trigger, and the most frequently occurring trigger may be vaccine ingredients, and of those ingredients, mercury may be the worst offender.

These "Autisms" usually involve autoimmune disorders and other immune dysfunction, toxicological problems of varying kinds (again mercury being the biggest offender, but not the only offender by any stretch since we also find lead, aluminum, cadmium, antimony and lots more metal in these kids), GI disorders and a whole host of vitamin and mineral imbalances and multi system and organ dysfunction.

Mercury and vaccines continue to be the focal point of the discussion, because health authorities don't argue that lead, air pollution, and diets or processed foods full of sugar, dies and preservatives is good for kids and that all kids should have them. They do with vaccines.

And if the original DAN protocol was just attacking mercury (which I don't think is accurate because Bernie Rimland was doing tests on B vitamins in the 60's or 70's as I recall) then that must have been quite early in the unraveling of the medical model for autism treatment. I have been attending DAN conferences for 4 years and it has been much more complicated than Hg=autie since then.

I wish it were that simple! We could just chelate and go!

So if you are looking for mercury only people, I can't really help you there.

I don't know anyone who is treating via DAN that is mercury only.

jypsy said...

"The DAN or medical model or recovery approach is not a 'mercury=autism' theory. "

That is absolutely the point I was making and why I felt "DAN parents" was not a good substitute for "mercury camp". I think the point I *did* miss was that you (and/or others) no longer want to be pinned to mercury but have expanded your focus. Still, my question would stand. Given that there are parents involved in biomed approaches to autism who do not believe that mercury, especially thimerasol has contributed to autism, what term would you give to those people, like yourself, who do? As I said I have the *original* DAN protocol and it is a far cry from the recent one. Mercury was not the issue then that it is now. (My own approach, BTW, is that there is not one autism but many "autisms" as well). So, (correct me if I'm wrong), "DAN Parents" all believe that there is a link between mercury and autism, that in those genetically predisposed to autism,. mercury can and has caused autism. If this is the case, "DAN parents" would do but then it excludes everyone who believes the autism/mercury link but doesn't follow the DAN protocol.

See my problem? I'm not looking for "mercury only" but I'm looking for a word to only describe people who subscribe to that theory (though they may subscribe to 1,000 others) without including people who subscribe to many other theories you do, but not the mercury one, (like "curbie", "Medical Model Moms", "Recovery Renegades", "Biomed Heads") and without attributing a treatment protocol (DAN) to them that they may never have even heard of.

It could be I'm looking for "people who believe mercury causes autism" is the best we'll come up with which would make me ask whether it was the words "mercury camp" or the context they were used in that offended you?

jonathan said...
This comment has been removed by the author.
Joseph said...

Ginger: You seem to be making too many assumptions about someone's beliefs. I'm married. You are too. How would you feel about someone making assumptions about your beliefs based on what your husband believes?
You also seem to be making a conspiracist suggestion: That she was hired *because* of her presumed beliefs.