Does The NIH Want To Study Jenny McCarthy’s Son?

22 Mar

Why would the National Institutes Of Health want to study Jenny McCarthy’s son?

Similarly, there are a large number of anecdotal reports of children with autism who, following intensive biomedical intervention (e.g., gluten/casein free diets, vitamin supplements, chelation), are indistinguishable from their typically developing peers.

Jenny McCarthy seems to have pretty much claimed she cured her son’s autism.

Yeah, I know, she’s apparently claimed a lot of stupid things though:

You know, I could in two months turn Evan completely autistic again. I could do it completely through diet. And maybe getting some vaccine boosters.

I really can’t keep up with Jenny McCarthy’s anti-vaccination and autism nonsense.

If you’re one of those types who’s attracted to McCarthy’s silliness like many are to a car accident, but are smart enough to just keep driving and later try to catch a thumbnail report of what much of the nonsense seems to be about, I recommend reading Kev’s recent piece in response to an article of hers in the Huffington Post.

An Open Letter To Jenny McCarthy

In that Huffington Post article, she wrote the following:

Parents of recovered children, and I’ve met hundreds, all share the same experience of doubters and deniers telling us our child must have never even had autism or that the recovery was simply nature’s course. We all know better, and frankly we’re too busy helping other parents to really care.

Uh huh.

And remember when Jenny McCarthy wrote this a couple of years ago at a CNN blog?

Evan is now 5 years old and what might surprise a lot of you is that we’ve never been contacted by a single member of the CDC, the American Academy of Pediatrics, or any other health authority to evaluate and understand how Evan recovered from autism. When Evan meets doctors and neurologists, to this day they tell us he was misdiagnosed — that he never had autism to begin with. It’s as if they are wired to believe that children can’t recover from autism.

So where’s the cavalry? Where are all the doctors beating down our door to take a closer look at Evan? We think we know why they haven’t arrived. Most of the parents we’ve met who have recovered their child from autism as we did (and we have met many) blame vaccines for their child’s autism.

Source (and emphasis mine)

Autism research was being funded and conducted by U.S. “health authorities” long before Jenny McCarthy entered and re-entered the public eye (rebranded from IndigoMoms.com to Generation Rescue back sometime between 2006 and 2008), of course. But I suppose it’s quite possible they weren’t interested in stories like Jenny’s. That’s apparently a thing of the past (and so should be McCarthy’s claim that they aren’t interested).

While it might not meet McCarthy’s apparent expectation of a personal contact, indeed the NIH is interested in the subject.

Identification of Characteristics Associated With Symptom Remission in Autism

Additional detail here.

This study has apparently been listed since June, and it’s still recruiting!

LBRB blogger, Sullivan, noted this not too long ago:

NIH to study recovered autistics

He had an interesting observation too:

This is a study that should be done, in my opinion. I will note that this study has supposedly been one of the key pieces being sought by multiple parent groups. I will further note that I have not seen any of them mention this study. Quite the opposite, in fact. I see comments occasionally on blogs about how their frustration that such a study is not being performed. Perhaps I missed it, but I am curious why their leadership doesn’t make a big deal out of this.

To repeat, a component of this study (which is also looking at other possible reasons for remission) is looking for Jenny McCarthy:

Similarly, there are a large number of anecdotal reports of children with autism who, following intensive biomedical intervention (e.g., gluten/casein free diets, vitamin supplements, chelation), are indistinguishable from their typically developing peers.

The Sponsor and Researcher for this study? The NIH.
(Note to Jenny: that’s a “Health Authority: United States: Federal Government”)

They’re looking for Jenny. They want to hear her/Evan’s story (they’ll want substantiating detail too, but that won’t be a problem).

I wonder how many of the “Rescue Angels” or other AoA followers have signed up to participate? Did Jenny McCarthy get the word out to her people? I’m sure she did, right? Like Sullivan, did I miss it too? I could have.

If you don’t think she might have, and if you know Jenny McCarthy (cause lord knows, I don’t), please make sure she gets this info:

Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
Fax: 301-480-9793

Electronic Mail:prpl@mail.cc.nih.gov

About these ads

25 Responses to “Does The NIH Want To Study Jenny McCarthy’s Son?”

  1. Joeymom March 22, 2010 at 13:10 #

    Wow, I think this will be fascinating. I hope they find that some of the stuff people do really does help, because… well, stuff that helps kids gain skills, self-regulate, and be able to function in society is a good thing. Which is why we love our OT and SLP so much. :)

  2. Broken Link March 22, 2010 at 17:18 #

    A while ago, on an ABC news story, I posted the link to this study (the link has now been edited out). I was suggesting that “Karen2Atlanta”, who claims her child is recovering from autism through biomed, take part in this study. Here’s here response as to why she wouldn’t take part:

    Sir I have no doubt that my son has improved with chelation I have it in paper and medically documented.I never set out to prove anything except to get him back, to stop the GI pain, find his words once again.At one point I hoped that he could could just express pain or say yes or no. That way in a group home he could state a preference or tell someone he was in pain. Instead we got so much more.We have a child living a very beautiful verbal life. The medical profession and NIH can not be trusted in my book ever again. I would never let the NIH poke or prod my kid. Their answers are 30 years out. My trust was forever violated when the CDC hid critical Simpsonwood documents vs banning Thimerosal and protecting my child.Information and Biomedical care needs to be expedited to parents as well as early therapy and ABA which also helped us. Incidentally it was our first DAN doctor that pushed behavioral/sensory therapy as much as everything else that would heal his body.I often say Thimerosal went through my poor baby like a hornet.It was absolutely stupid to use Mercury (particularly when it was banned topically after cord deaths) in infant vaccines. To cover it up was twice wrong.

    and

    I owe you or “science” nothing sir. You do not intimidate me.We happen to see a mainstream pediatrician as well a family practitioner who is also a DAN doctor.I was going happily along in life until vaccines loaded with Thimerosal injured my child. He met all his milestones, walked and talked early then fell off the map after Thimerosal loaded vaccines.As a medical consumer I have only shunned physicians who fail to give full consumer disclosure on lack of vaccine safety studies for all the combined childhood vaccines or the toxins and human DNA(aborted human diploid cells) in them. Physicians who ask how many pets we have but negate to notice or treat when my 2 year old stops talking.As a consumer I took my wallet elsewhere.You have seemed to stop commenting on this divorce case and chelation and are bent to discredit me.If you are an honest scientist you will demand a study with vaccinated vs unvaccinated kids, then we can explain the 6000% increase in Autism… or lack there of. If you are just the neuro-diverse targeting another parent just trying to help their own flesh and blood. Look, please just take the dx “Autism” we will define what happened to us with something else, like vaccine injury. My comments here is directed to ABC.By the way my son has been very well studied by doctors, teachers and evaluating therapists. I am happy as a clam to have my sweet little boy back. One day maybe he can tell you himself what it was like when he couldn’t talk.

    With that kind of cognitive dissonance, it’s no wonder there are no kids to study.

  3. RethinkingAutism March 22, 2010 at 17:24 #

    Have you seen this hysterical clip? http://www.youtube.com/watch?v=76Pf4ZPAJh4 .

  4. Broken Link March 22, 2010 at 17:25 #

    Just as an addendum, this person Karen2Atlanta, has a signature line that says: “Mom to xxxx 8 and recovered from very severe Autism.”

    I’ve removed the child’s name.

  5. Science Mom March 22, 2010 at 17:36 #

    @Broken Link, you have touched upon what I suspected would be the case. The NIH ‘remitted autism’ study requires diagnoses from qualified professionals, not DAN!s. So it is easy to delude oneself when your DAN! tells you what you want to hear, i.e. ‘your child is recovered/recovering, rather than take the child to a neurodevelopmental paed that will probably not confirm the DAN! evaluation. Well, this is their chance to show the world that their children have been ‘recovered’ by biomed so if they don’t participate, they can’t complain that no one is interested in their stories.

    @RethinkingAutism, Hmmm, so Evan is undiagnosed, not, “he lost his autism diagnosis”. Peculiar choice of words.

  6. Rethinking autism March 22, 2010 at 17:51 #

    @science mom, I am going to write an open letter to McCarthy and Redwood asking them to stop commenting on autism if both of their children are undiagnosed, misdiagnosed, recovered, whatever.

  7. Broken Link March 22, 2010 at 18:02 #

    I don’t think Lyn Redwood’s child would be eligible anyway. IIRC, he had a PDD-NOS DX, and this study is looking for kids with an original autistic disorder DX.

  8. Ian MacGregor March 22, 2010 at 19:14 #

    @ScienceMom. Do people go to DAN doctors for a diagnosis? It would seem more likely they first get a diagnosis, and then become aware of their existence.

    I am much more interested in the study as it relates to behavioral interventions.

    A couple of years ago, perhaps longer there were longitudinal studies showing some people come off the spectrum in JADD. None were attributed to biomedical interventions, IIRC.

    Finding out more about these children especially if a common profile can be established, would be fantastic.

    I would hope all you have had a child covered by any means at all would be thrilled that such a study is being done, and eager to help. I don’t understand the attitude of ,”I know my child has been cured, and I will not submit that fact to professional review”, makes me wonder if such parents are reluctant to have their claims scrutinized.

  9. Science Mom March 22, 2010 at 19:38 #

    @ScienceMom. Do people go to DAN doctors for a diagnosis? It would seem more likely they first get a diagnosis, and then become aware of their existence.

    No they don’t; I am referring to after they have fallen into the DAN! trap and accept the ‘diagnosis’ of their DAN! that their child has ‘recovered’ or is ‘recovering’. I agree that such parents are reluctant to have their children scrutinised by outside professionals, lest their house of cards comes tumbling around them.

    • Sullivan March 22, 2010 at 21:25 #

      TIME Magazine recently had an article on Jenny McCarthy. The author brought up the idea that perhaps Ms. McCarthy’s son had Landau Kleffner syndrome instead of autism. This caused much discussion on the net, and many people came to defend the idea that Ms. McCarthy’s son actually had autism. When Ms. McCarthy responded to the TIME article, she made no mention of the L-K syndrome idea.

      Isn’t this something people should know–whether Ms. McCarthy’s son’s progress was due to controlling the seizures rather than the treatments she claims worked?

  10. RethinkingAutism March 22, 2010 at 22:30 #

    @Sullivan, I believe we should know.

  11. cs March 23, 2010 at 00:26 #

    One thing I would like the NIH to produce in a study of McCarthy’s son is the date of Evan’s last vaccine before he had a seizure on the highway. She claimed that her son died in front of her from a vaccine injury. But the vaccine was a good year before the seizure. She claims “Boom! The light went out of his eyes.” But she also claims she didn’t notice the autism for quite some time. She didn’t notice a Boom?

  12. NightStorm March 23, 2010 at 02:02 #

    @Sullivan I think knowing whether or not Evan was really autistic is really important.

  13. lance March 23, 2010 at 02:34 #

    We’re doing a delayed vax schedule with our daughter. We believe in the theory behind vaxes but we just think its too much too soon.

  14. Chris March 23, 2010 at 04:00 #

    Lance, I am sorry but you would have to provide the studies that show the science behind your schedule. This is something that neither Dr. Jay Gordon nor Dr. Bob Sears have produced.

    Also, the list of “experts” on the website you listed are dubious at best. They are just usernames, and there is no way to assess their background. What is especially troubling are the “experts” who have ‘nyms like “concernedmama” and “novaxmama.”

    You are obviously spamming for an unscientific website.

  15. Corina Becker March 23, 2010 at 06:19 #

    I’m kinda curious: who made Evan’s autism “diagnosis” in the first place?
    After that clip RethinkingAutism provided, with the “undiagnosed” (does she even realize what that MEANS, undiagnosed means not-diagnosed, not losing the diagnosis), I really don’t want to subject my brain cells to more of the burning stupid.

    Given from what I have heard from McCarthy about Evan’s “recovery”, I do strongly suspect that Evan has L-K syndrome rather than autism. However, unless someone seriously takes McCarthy to task for her constant re-writing of events, I doubt it’ll ever be very clear.

    Say, wasn’t her mother writing a book about what really happened?

  16. Kate Gladstone March 23, 2010 at 16:30 #

    Of course, before Mrs. McCarthy started telling the world her son had autism and she was curing it, she used to tell the world that her boy was different because he was an “Indigo Child” — which means, as far as I can figure out, an enlightened spiritual being in contact with space aliens.

    (For more info on her claims before she decided it was autism instead, search for this on Google:
    “Jenny McCarthy” “Indigo Child”)

    She was saying this for years before she started talking about autism instead — and she was saying this for years *after* her son had his vaccinations.

  17. Aimee April 8, 2010 at 04:45 #

    Jenny McCarthy’s son never had autism. It’s amazing that more media hasn’t exposed this. This really shows what a scam the autism industry has become. The publishers of Jenny McCarthy’s book about her “autistic son” should be ashamed of themselves! What total IDIOTS! Also, the magazines that did articles how she “cured her autistic son” should be shut down for being liars and frauds. Or at the least, reckless disregarders for the truth and facts about a case of autism!!!!!!!!!!!!!!!!!!!

  18. Aimee April 8, 2010 at 05:19 #

    Oh yea, and I LOVE how the media conveniently FORGETS McCarthy’s INDIGO child website! I do feel sorry for her, however. I mean, her son did have seizures and it probably rocked her world and really scared her, so given her already unstable mind with this INDIGO new age crap, no wonder she just lost it and had to transfer her pain into something more powerful and popular like the “autism” diagnosis….which has become a total JOKE! What is severe autism on you tube is also a good video.

  19. angryblacautie October 9, 2010 at 07:43 #

    Jenny McCarthy’s book publishers should get cracking on a new book, called “jenny mccarthy’s son never had autism, we’re sorry we misled you.”

  20. Kate Gladstone October 9, 2010 at 14:17 #

    Jenny McCarthy’s Twitter account is JennyfromMTV — if what you have to say to her won’t fit in a single tweet, you can send her a super-sized tweet via http://www.twitlonger.com — just type @JennyfromMTV and follow it, as usual, with whatever you want to say (or just leave out the @JennyfromMTV part and post it publicly.

  21. Chris October 9, 2010 at 18:23 #

    Kate, Carrey has already blocked tweets he doesn’t like. Ms. McCarthy has also figured out how to block critical tweets, as noted in the comments of the link I posted.

  22. Kate Gladstone October 10, 2010 at 07:24 #

    Since Jenny McCarthy blocks critical messages sent to her, what about sending this page’s link to *all* of the Twitterverse?

  23. Chris October 10, 2010 at 14:34 #

    That would be a form of spamming, which more often than not backfires.

Trackbacks/Pingbacks

  1. A bit of irony from Generation Rescue: still citing Jenny McCarthy as the face of autism recovery | Left Brain Right Brain - August 5, 2014

    […] but later were diagnosed to be not autistic. Not just a coincidence, but years back my friend Kev Leitch not only discussed that study while it was in progress, but pointed out that if Jenny McC…. Here’s what Jenny McCarthy had to say back […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,158 other followers

%d bloggers like this: