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Unethical DAN doctor to be supervised by acupuncturist

31 Dec

An Illinois doctor who subjects autistic children to “unwarranted, dangerous therapies” must have her work reviewed by an acupuncturist. The state medical board also fined Dr. Anju Usman $10,000, ordered her to take additional medical education classes, and placed her on probation for at least one year, as part of her plea agreement with state regulators.

The acupuncturist, Dr. Robert Charles Dumont, is a pediatrician, and a member of the faculty of the Integrative Medicine Department of Northwestern University School of Medicine. According to the consent decree, Usman “shall submit ten active patient charts on a quarterly basis” to Dumont. When asked if Usman is allowed to select which charts will be reviewed, a medical board spokesperson referred the reporter to the language in the consent decree.

Usman suggested to regulators the doctor who will be reviewing her charts, according to Usman’s attorney.


Usman is director of True Health Medical Center in Naperville, Illinois and owner of Pure Compounding Pharmacy. She a is regular presenter at Autism One, an annual gathering of vendors, providers, quasi-researchers and desperate parents.

The Illinois Department of Financial and Professional Regulation says Usman provided “medically unwarranted treatment that may potentially result in permanent disabling injuries” to a boy that Usman started seeing in the spring of 2002, when the child was not quite two years old. Records indicate Usman diagnosed the boy with a calcium-to-zinc imbalance, yeast, “dysbiosis”, low zinc, heavy metal toxicity, and abnormally high levels of aluminum, antimony, arsenic, cadmium, copper, lead, nickel, silver, tin, titanium and selenium. Usman prescribed chelation, a hormone modulator, and hyperbaric oxygen therapy, which regulators describe as an “extreme departure from rational medical judgment.”

The complaint against Usman was filed by the boy’s father in 2009. A year later, he sued Usman and Dr. Daniel Rossignol of Melbourne, Fla. for harming the child with “dangerous and unnecessary experimental treatments.” A Chicago-area lab, Doctor’s Data, was also sued. The plaintiff voluntarily dismissed the suit in 2014, but will reportedly reinstate it in 2015 or later.

Usman was the subject of a 2009 Chicago Tribune investigation into questionable medical practices aimed at treating autism. The article noted that Usman and Rossignol “are stars of Defeat Autism Now!, having trained thousands of clinicians…  They are listed on the group’s online clinician registry, a first stop for many parents of children with autism seeking alternative treatment.”

Usman’s name is also connected to the 2005 death of Tariq Nadama, a five-year-old boy who died at the hands of Dr. Roy Kerry. Usman diagnosed the boy with high aluminum levels, then referred him to Kerry, an ear-nose-throat specialist in Pennsylvania. Kerry treated the child for lead poisoning, even though his blood lead levels were below that which indicates the need for chelation.

Cross posted from Autism News Beat

An update: Adverse reaction data for alternative therapies for autism?

24 Jan

With apologies for how long this took to put online: Last September I wrote an article Adverse reaction data for alternative therapies for autism? In it I pointed out how the Autism Research Institute (ARI) had a different standard for reporting adverse reactions for FDA approved drugs and for altnerative therapies. Jane Johnson graciously participated in the conversation and saw that the web page in question was changed. The page now includes this paragraph:

If your son/daughter experiences side effects from taking prescribed medications, please contact the FDA at: Since supplements may also lead to side effects, please report them to: You can also call: 1.800.FDA.1088 (1.800.332.1088) to report adverse effects associated with prescription drugs and supplements.

I greatly appreciate the change and again apologize for taking so long to acknowledge it here.

By Matt Carey

2011 – The Last Year For ARI’s DAN! Doctors

2 Jan

As late as just a few months ago, The Autism Research Institute (ARI), promoted their upcoming Fall 2010 Defeat Autism Now! conference in a monthly newsletter. Note the name of the conference:

“Fall 2010 ARI/Defeat Autism Now! Conference”

Now look at ARI’s promotion of their Spring 2011 conference.

“Spring 2011 ARI Conference
(formerly known as Defeat Autism Now!)”

Do you see the difference? It’s pretty hard to miss. What about all those practitioners (physicians, nurses, chiropractors, nutritionists, naturopaths, and homeopaths, etc.) who want to participate in the “DAN! Physician Training”, you know, become “DAN! Practitioners”? How does one become a DAN! doctor, if Defeat Autism Now! is a former identity?

A quick look at the ARI Conference website answers that right away.

The Autism Research Institute Conference Formerly known as Defeat Autism Now!

The practitioner seminars are still part of the conference. But there’s something potentially newsworthy here too.

As of 12/31/11, ARI will no longer be maintaining a clinician registry (a.k.a “the DAN list”). No new names will be added to the registry in 2011.


You read that correctly – no new names in 2011, and at the end of this year, it’s over. No more list of DAN! Doctors.

According to ARI’s website, one is best served in finding a “talented clinician” by way a support group – local, or you know, out there on the interwebs.

As recently as 10 years ago it was nearly impossible for parents to find clinicians who approached treating patients with autism from a medical point of view, so ARI started keeping a clinician registry (the “DAN list”). We tried a number of measures to ensure that every clinician on our list provided high-quality care, but we are a small non-profit with limited resources. We have determined that those seeking a talented clinician are best served by connecting with support groups—either locally or online—instead of choosing from a list that cannot be vetted.


I’m not sure what they mean by having tried “a number of measures to ensure that every clinician on our list provided high-quality care”. I understand that there were special “clinician training” sessions at DAN! conferences in the past, but as far as I understood it in the past, becoming a listed DAN! practitioner might have required little more than attend a conference, sign a statement pledging to “conduct their practice in accordance with DAN! philosophy”, and ask to be listed. Although I could be wrong, I find it incredibly difficult to believe that there were in fact any significant measures taken by ARI to ensure the provision of high quality care by clinicians on its list. I seem to recall that Roy Kerry was added to ARI’s list of DAN! practitioners in 2006 after the death of Tariq Nadma in 2005.

ARI’s notes and disclaimers for the remaining year of life for the list of DAN! doctors seem pretty careful:

If someone claims to be “DAN-certified,” they’re overstating; neither ARI nor Defeat Autism Now! has ever had a certification program.

The following are practitioners who have asked to be listed as providing Defeat Autism Now!®- based interventions for patients with autism. Most are physicians, others are licensed health-care professionals in related fields.

ARI has no means of certifying the competence nor quality of practice of any practitioner. The lists are provided as a community service. The Autism Research Institute disclaims and does not endorse or support any individual or entity listed; makes no representations, warranties, guarantees or promises on behalf of or for those listed, and assumes no liability nor responsibility for any service or product provided. ARI does not ‘certify’ practitioners or guarantee competence, skill, knowledge, or experience.


So is that it? Is this really the end of DAN! doctors in less than a year? Isn’t there a D-List celebrity with apparent anti-vaccine leanings , who can save (or may have already saved) the day for all the poor physicians, nurses, chiropractors, nutritionists, naturopaths, and homeopaths who need be available to all those parents who are desperate to recover an “epidemic” of kids from autism, mercury poisoning, or “vaccine-induced” whatever?

Aha! Jenny McCarthy’s Generation Rescue! Where, from the home page, a parent can click on “Find A Doctor” and learn about the NGMD’s.


What’s an NGMD according to Jenny McCarthy’s Generation Rescue?

Answer: According to Jenny McCarthy’s Generation Rescue website, an NGMD is a “New Generation Medical Doctor”, and “These clinicians share Generation Rescue’s ideologies, practices, and philosophies of treating the underlying medical issues of individuals with autism.”


I think this is potentially an interesting development, because in the past, a parent brand-new to an autism diagnosis might have assumed scientific credibility from a movement’s (Defeat Autism Now!) list of practitioners associated with a name like “Autism Research Institute”. If nothing, ARI is a scientific sounding name. I don’t think that’s as likely to be the case for the “NGMD’s”, who could be seen by many as simply associated with a fringe anti-vaccine group promoted by Jenny McCarthy.

What do you think?

Safeminds defends treatments the FDA deemed “dangerously misleading”

18 Oct

The United States Food and Drug Administration (FDA) recently announced that they had sent warning letters to eight groups who were promoting chelation products without prescriptions and with unproven claims of efficacy.

Chelation is a mainstay of many alternative medical practitions, especially in autism. There is a hypothesis that autism is caused by mercury poisoning. Autism symptoms don’t look like mercury poisoning and multiple studies have been performed testing the hypothesis and shown no link. But the idea lives on. Autistics, mostly children, are subjected to chelation “therapy” to remove heavy metals from the body. After over a decade of this practice, there is still no demonstration that chelation does anything to help autistics. There are studies on Peruvian hamsters which are used to support the idea that autism is caused by mercury poisoning. No, seriously, one of the supports for the mercury/autism link is a study on Peruvian Hamsters. Just goes to show how tenuous the “science” backing chelation is.

Here is part of the FDA statement:

Federal regulators are warning eight companies to stop selling so called ‘chelation’ products that claim to treat a range of disorders from autism to Alzheimer’s disease.

The Food and Drug Administration (FDA) says the companies have not proven their products are safe and effective in treating autism spectrum disorder, cardiovascular disease, macular degeneration, Parkinson’s disease or any other serious illness. Some of the companies also claim their products can detect the presence of heavy metals in the body in an attempt to justify the need for chelation therapy.

One of the more vocal organizations promoting the mercury/autism “link” is a group called SafeMinds. So it isn’t a surprise that they would respond to the FDA warnings..

Here is the opening paragraph from the SafeMinds response:

The FDA issued a media release and held a press conference on over-the-counter chelating products. A recording of the press conference was made available this afternoon (recording available at 800-839-7073). FDA issued warning letters to 8 companies promoting over-the-counter nutritional supplements for chelation therapy (HERE). Chelation is a method of removing heavy metals from the body. The FDA warning has no bearing on prescription chelation drugs which are used under the supervision of medical professionals.

“Nutritional Supplements”? How does a chelator count as a “nutritional supplement”? The human body does not produce chemicals like DMSA which are used for chelation. SafeMinds is well aware of the falacy of the “nutritional supplement” argument after the recent debacle over the chelator turned “supplement” OSR, which had to be pulled from production.

So, SafeMinds starts downplaying the fact that chelators are drugs and, as such, should be regulated.

But they quickly change the tune and acknowledge that these are drugs: “The FDA warning has no bearing on prescription chelation drugs which are used under the supervision of medical professionals.”

As I read this, I had to ask myself “Why did SafeMinds chose such imprecise language?” Let me explain:

Assume a medical professional, say a chiropractor or a nutritionist, “supervises” my use of the prescription drug DMSA, but sells the drug to me without a prescription (as these professionals can not write prescriptions). That would fit into the SafeMinds interpretation, but is clearly not the intent of the FDA statement.

Here is an accurate statement: The FDA warning does not have bearing on the use of chelation drugs prescribed by and supervised by a medical professional.

Continuing with the SafeMinds statement:

In its press conference, the FDA implied that chelation products were being used by parents of children with autism without a doctor’s supervision, but on questioning by reporters, FDA representatives were unable to back up the claim with any evidence of use of OTC chelation products by autism parents or of their use without medical supervision. The FDA asserted that the OTC products being promoted were dangerous and could lead to kidney damage, dehydration and death. On questioning by reporters, the FDA admitted that it had received no reports of adverse reactions to the products or to chelation in general, other than 1 death 5 years ago which was due to a medical error and in which a prescription drug was used.

Note that SafeMinds chose their words carefully. They don’t state that the practice doesn’t occur. SafeMinds just states that the FDA didn’t have the evidence on hand of the “use of OTC chelation products by autism parents or of their use without medical supervision.”

Is Safeminds so out of touch with the online autism community that they can’t find groups promoting over-the-counter (OTC) chelators by autism families? The practice is common. Surely SafeMinds members peruse the exhibitor booths at the parent-conventions (like Autism One).

Google search: “how to buy DMSA without a prescription”. Lot’s of hits.

Here is hit #2: Pretty clear they are targeting autism treatment there, just from the URL. The blurb on Google for this site? “This page IS intended to show you where to buy DMSA without a prescription. You can get DMSA prescribed, however the cost will range from $2-3 per pill. …”

I didn’t capitalize “IS” in that statement, they did. They wanted to emphasize that one could buy chelators without a prescription.

SafeMinds states that the FDA has received no reports of adverse events from chelation in general. I find this odd. The FDA must not follow online autism parent groups such as those on Yahoo. The FDA must not have read transcripts of the Omnibus Autism Proceeding, which included a description of a child who regressed after being given chelation therapy (under the watchful eye of a prominent alt-med doctor). The FDA must not have performed a google search on chelation deaths with site set to

First hit, “Deaths Associated with Hypocalcemia from Chelation Therapy — Texas, Pennsylvania, and Oregon, 2003–2005“.

When it comes to the question of “why” adverse events are not commonly reported I am again reminded of the OSR fiasco. The company that sold OSR specifically told their clientele to contact the company in case of adverse reactions. No mention was made of contacting the FDA (which can be done here). I guess I could search the websites of the groups that promote OTC chelators to see if they inform their clients of the ability to report their drug/supplements to the FDA. Somehow I feel confident that I would be able to find groups (possibly many or most) do not give that information.

SafeMinds posted their statement on the blog they sponsor, The Age of Autism. Another sponsor of that blog is Lee Silsby, a compounding pharmacy. They list chelators such as DMSA and EDTA under the category “autism treatments” (Specialties | Autism Treatments | Transdermal DMSA Cream, or Specialties | Autism Treatments | EDTA (calcium)). Not under “heavy metal poisoning” treatments, autism treatments.

The Autism Research Institute, a group which promotes much in the way of alternative medicine as therapies for autism, has a chart that is often used to promote chelation. In their survey, they claimed that over 70% of parents reported that their child got better with chelation. The survey has been often criticized as being unscientific and very biased. Even with this biased sample, 3% of parents reported that their child “got worse” with chelation.

A couple side notes are worth mentioning. First, in that survey the ARI list chelation under “Biomedical/Non-Drug/Supplements”. Non drug? Supplement? I doubt the FDA will agree. Second, the ARI survey lists secretin therapy as beneficial for autism. Secretin hit the news in the 1990’s as a potential autism therapy and has since been shown to be no more effective than a placebo. The survey is very, very biased towards “biomedical” treatments.

Surely SafeMinds is aware of this survey. As in, definitely they are aware of it. Just as Safeminds are certainly aware of the child in the Omnibus proceeding who suffered after chelation. But SafeMinds pretend as though there are no adverse reactions. It is disingenuous, to say the least.

SafeMinds ends their statement with this paragraph:

SafeMinds agrees with the FDA that products being promoted as drugs and biologics should have thorough and unbiased assessments for safety and that parents should work with their healthcare professionals when considering health interventions. SafeMinds feels that FDA has tried to cast autism parents in a negative light without any supporting evidence, by implying that autism parents were giving their children dangerous products without medical oversight. Only on questioning by the media did the FDA have to back off from its wild claims. SafeMinds feels the FDA owes the autism community an apology.

Basically, SafeMinds have taken the Human Shield defense. Rather than actually discuss the facts, SafeMinds attacks the FDA for “wild claims” and claims that the FDA owes the autism community an apology.

From the perspective of this autism parent I would say, yes, the FDA owes us an apology: for taking so damned long to address this issue. The abuse of chelation as a “treatment” for autism has been going on for many years. It is about time that the FDA cracked down and made the “wild claim” that a prescription drug should be given by perscription.

Heck, the FDA isn’t even making the “wild claim” that toxicology treatments should be performed by toxicologists. Just someone with a prescription pad.

Why isn’t SafeMinds telling autism families to seek out medical toxicologists to test and treat heavy metal poisoning? The answer is painfully clear. The methods of diagnosis and treatment that groups like SafeMinds promote do not compare to the methods used by those trained specifically to treat heavy metal intoxication.

Should make one pause to wonder.

Nature Fubar

13 May

Nature, the usually reputable Science magazine have launched a Scitable Autism section and with it screwed up their usual impeccable attention to detail.

Who for example thought it necessary to put:

Determining the cause of — and the cure for — autism is crucial for our society

I wonder. And who thought it necessary to link to no less than three anti-vaccine links on the home page of this….blog? Wiki? Two links to Autism Speaks whose controllers recently attended a DAN! conference and one link to ARI itself.

Its a ridiculous and desperately sad state of affairs when even Nature, that bastion of good science resorts to scaremongering about autism and promoting an anti-vaccine viewpoint.

Listen to parents…except when they say things you don’t want to hear

25 Mar

How many times do we hear, “Listen to the parents” on medical issues involving their autistic kids? Usually this comes from alternative medical groups who don’t have the science to back up the safety and efficacy of their therapies. What happens when a parent disagrees with these groups?

In Lawsuit against alternative medical practitioners Usman and Rossignal we discussed a father who has brought suit against prominent Defeat Autism Now (DAN) doctors Usman and Rossignol, and the laboratory Doctor’s Data.

Orac, at Respectful Insolence, has discussed this case as Suing DAN! practitioners for malpractice: It’s about time, where he uploaded the actual complaint.

In that complaint the father is alleging many things. High amongst them is the question of whether the “challenge” chelation tests are valid, These were used on his child and supposedly showed heavy metal poisoning. In a challenge chelation test, a chelator drug is given to a child before a urine test is taken. Chelators are designed to draw metals out of the body and allow them to be excreted through the urine (and other ways). There are no standardized references for metal contents in challenge testing. The American College of Medical Toxicology has made a very clear statement about challenge chelation testing. Here is their conclusion:

It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

Recall, challenge testing is noted in the lawsuit. From the section of claims against the Doctor’s Data (who are also defendents in the lawsuit):

The non-standardized method of testing that Defendant utilized on or about April 22, 2004, January 27, 2006, January 13, 2007, February 26, 2007, May 26, 2007, August 6, 2007, October 30, 2007, November 13, 2007, January 12, 2008, January 26, 2008, April 26, 2008, October 29, 2008, and March 27, 2009, wherein specimens were collected after the administration of a provoking agent and compared to unprovoked or unchallenged specimens was an improper method of determining whether A.J. had a potentially toxic level of heavy metals in his system

So, challenge chelation testing isn’t scientifically validated, has no benefit, but was used to justify certain therapies on this child. How did the Autism Research Institute respond to this? They blame the parent’s marital situation.

No, really, I’m not making this up. Rather than accept the complaints on their face and give this autism parent respect, they dismiss his multiple complaints as being…well, you read it:

Recent articles by ABC News and the Chicago Tribune on M.D.s who subscribe to the Defeat Autism Now! approach to treatment indicate the spread of misinformation and misunderstanding in recent months. The complaints about Drs. Usman and Rossignol resulted from a custody case– a painful situation for any family, one that can lead to accusations that must be sorted out in a court of law—not the media

Yes, it isn’t because the father is really annoyed that he was told challenge chelation testing is valid, or that his family spent lots of money on testing and on chelation. It couldn’t be that the father has not seen benefit from these therapies. It isn’t any of that. It is a custody battle issue. For the record, the defendants in the case do not include his wife.

ARI defends their approach in rather vague terms:

The Defeat Autism Now! approach to autism invites the medical community to be more responsive, inquisitive, and knowledgeable about treating these disorders.

The approach is not in itself a source of controversy, since many treatment interventions are commonly prescribed by traditional health professionals.

My view differs from the ARI statement. It would seem to this observer that the approach is the source of controversy. From their own website:

The best diagnostic test for toxic metal overload is the chelation challenge test. The chelation drug is administered, followed by a timed urine test to help assess the body’s burden of toxic elements.

This is in direct contradiction to the statement from the American College of Toxicologists. The ARI approach (including challenge testing) is a key point of the lawsuit. I am not able to reconcile this with the idea that the “approach itself a source of controversy”.

The great problem is rather that chronic, unaddressed illness plagues many, if not most, of the children and adults on the autism spectrum. These conditions, thoroughly documented in the scientific literature, often involve the gastrointestinal system and/or the immune system, but the medical establishment has been professionally insensible to what is a desperate situation in the expanding autism population.

Odd. If anyone outside of the alternative medical community ever makes a statement that the is driven by “desperation”, they are sure to get jumped on.

The focus of the Defeat Autism Now! approach is twofold: to provide patients with allergen-free nutritional support, to uphold and to repair the immune system as needed, and, if appropriate, to reduce the body burden of environmental toxins; to provide clinicians in-depth medical and scientific information, with Continuing Medical Education credits.

There is the mention of what is a main crux of the lawsuit, “body burden of environmental toxins”. That’s it. No mention of challenge testing. They mention that the approach includes reducing “the body burden of environmental toxins”, but doesn’t address the key question: when is this approach “appropriate”. How is that decided? The challenge testing approach has not, to my knowledge, ever been defended in court. This case is

The ARI press release doesn’t discuss the real questions here. Brushing this off as a custody issue is not doing anyone any good and is rather insulting to the parent bringing this suit forward and his child.

Lawsuit against alternative medical practitioners Usman and Rossignal

5 Mar

A lawsuit has been filed in Chicago claiming that a child has been harmed by the treatments prescribed by Dr. Dan Rossignol and Dr. Anju Usman.

This is being reported in a story, Father of 7-year-old autistic boy says treatment harmed son. (also now on the Chicago Tribune’s website)

Doctor’s Data has also been named:

Coman also alleged that Doctor’s Data Inc., the St. Charles laboratory that performed the tests Usman and Rossignol used to justify these treatments, was negligent for using an “improper method” of testing.

We here at LeftBrainRightBrain have commented many times about the concept of “challenge” testing to “prove” heavy metal toxicity.

The suit spotlights a test often used to diagnose metal poisoning in children with autism. To conduct the test, doctors give children a chelation drug that forces the body to let go of some of the metals that exist in everyone – healthy or sick – in trace amounts. Those metals show up in urine, which is sent to a lab for screening.

In the case of Coman’s son, Doctor’s Data then compared those drug-provoked results to a reference range calculated for people who had never been given a chelation drug. Based on this apples-to-oranges comparison, Coman’s son was found to have elevated levels of lead, aluminum, tin and mercury – some with results Doctor’s Data listed in the “90% range of metal contamination,” according to the lawsuit.

According to the story, there are no comments from Doctor’s Data, Dr. Rossignol’s office nor Dr. Usman’s office.

Age of Autism to Autism Families: Make your children suffer

24 Nov

Your pretty red house is engulfed in a roaring fire. You keep feeding the fire. Maybe petrol will help. Pour it on. Maybe some oil. Pour that on too. You don’t know. Nobody knows. Some guy you met on the internet tells you he’s a fireman and that the best way to stop a fire is to try and smother it with bone dry hay.

Your burns are bad. Your kids burns are worse. Do you throw them out of a window where a few other ‘firemen’ are holding on to a sheet made of melting plastic? Or do you push them down the stairs, where the rest of the injured and dead families are?

Thats my response to the utterly asinine response Kim Stagliano posted on the Age of Autism blog today to the Chicago Tribune’s series of articles on the quacks and hacks infesting the autism community. She wheels out the same old strawmen…

That’s my response to the Chicago Tribune accusing us of performing “uncontrolled studies” on our kids. (Our medical doctors are thorough and safe, by the way.)

I know of at least two doctors associated with the biomed movement who are on sex offenders registers. I know of one DAN! doc who is associated with the death of a child. I know of one other who hospitlaised a child. I know another who performed exorcism on autistic kids. I know another who is under investigation for more than one complaint.

And why does it bother journalists like Trine Tsouderos and Pat Callahan that some of us are improving our children’s lives?

I can’t speak for these journalists but I’ll speak as the parent (and step-parent) of two autistic kids. You’re not improving your childs autism. Thats the claim that these journalists are challenging. I challenge Kim Stagliano or Mark Blaxill to show the autism community where a biomed treatment discussed by the Tribune led to a measurable and scientifically documented improvement in their child’s autism. In fact, I can’t think of a child belonging to the founders of Autism FAIR Media, Generation Rescue, Age of Autism, SAFE MINDS or the NAA that has either been cured of their autism or made any sort of progress towards that end result as a sole consequence of biomed treatments. Why? Because in terms of curing/recovering/treating autism *they do nothing* . As a direct consequence of that obvious fact, parents continuing with detox, urine injections, exorcism et al are – as the Tribune indicate – experimenting on their children.

The war on Tom Insel and the IACC

23 Oct

Tom Insel is director of the National Institute of Mental Health (NIMH) but he is better known to readers of this blog as the chair of the Interagency Autism Coordinating Committee. If you read other autism blogs, he’s probably very well known to you, as he has been the target of a concerted attack from the vaccines-cause-autism groups for a few months now. They even got the publicist, David Kirby, to take their battle to the public in a CBS interview.

Let me take a moment to make a side point. The vaccines-cause-autism groups (SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA)…I’m probably missing one or two), are basically a single consortium as evidenced by their single blog and their shared membership. I don’t see the need to treat them as separate entities. I really don’t see that they should be given multiple representations on the IACC.

I’ve been watching the IACC pretty closely for some time. I’ve also been watching the vaccines-cause-autism consortium. I’ve been watching the consortium build pressure against Dr. Insel.

One thing I’ve noticed: this level of pressure directed at Dr. Insel wasn’t always the case. Less than a year ago, Dr. Insel was not their target.

Take a look at one of the classic pieces of IACC intimidation: a piece called “Grinkers Stinker“. This is dated January, 2008. It was timed to coincide with a 4-day workshop that was the kick-off for the Strategic Plan process.

“Grinker’s Stinker” was a piece about the Dr. Joyce Chung, the former IACC coordinator. She is the wife of Prof. Roy Richard Grinker, anthropologist and author of the book Unstrange Minds. Dr. Grinker has publicly stated that he accepts the scientific consensus that vaccines did not cause an epidemic of autism. Dr. Chung has made no public statements (at least that I can find), but the lack of actual information about her or her opinions didn’t stop a blog post decrying her position on the IACC. From the blog post:

Does Joyce Chung agree with her husband? Did they ask her this question before she took the job?

Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

History has proven that, no, the Age of Autism can’t put an end to the mudslinging. Unfortunate, that.

Take a look at the blog post. There is no mention of Dr. Insel. No one decrying his “lack of leadership”, no one claiming “collusion” or “malfeasance”. None of the mudslinging terms currently used against members of the IACC, especially Dr. Insel. In fact, the first mention of Dr. Insel is in the comment by Ms. Davis. In her comment Ms. Davis suggests that Dr. Insel will be watching out for conflicts of interest.

Times certainly have changed. The Age of Autism likes to demonize those it disagrees with, and Dr. Insel certainly has been a recent target.

What happened?

Dr. Insel (a) had the IACC reconsider an initiative to call for a vaccine-autism study to be included in the Strategic Plan and (b) spoke before a congressional hearing about why vaccine/autism studies are not a high priority.

Not surprising to many of the readers here, I am sure, the vaccines-cause-autism consortium have a single issue (vaccines). As long as Dr. Insel’s position on vaccine/autism research, there was hope for the consortium and they left him alone. Once his current opinion formed and was public, he was public enemy number one. Yes, Dr. Paul Offit (vaccinologist and outspoken critic of the notion that vaccines cause autism) has been superseded.

Recently, Dan Olmsted (owner of the Age of Autism website) called for Dr. Insel to resign. Again, it boils down to the single issue: vaccines.

So, here we are. The vaccines-cause-autism consortium has declared war on Tom Insel for opposing their single-item agenda. If you think “war” is too strong a word, take it up with Mr. Olmsted. In referring to the recent incident where notes from an IACC member were made public:

…notes dropped on the floor (see the notes here) at the IACC, recovered by friendly forces and reported on our blog…

Yes, the Age of Autism people are “friendly forces”.

Here’s my perspective on Dr. Insel, for whatever it may be worth. He is the chair of the IACC. In my opinion, his role is to run the meetings and manage the staff. He should be getting good people in to serve on the IACC and the subcommittees and good people to consult on the topics that are discussed. Basically, his role is that of a facilitator–get good people together with the tools they need to do their job. He needs to be knowledgeable enough on the subject (autism) to do this.

You know what? Given the fact that his full time job is director of the NIMH, he’s actually done a pretty good job.

Is there room for improvement? Heck yeah. How about putting a greater emphasis on research into the needs of autistic adults? The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.

But, of course, the squeaky wheels (the vaccines-cause-autism consortium in this case) get the grease. The squeaky wheels have been calling for research into environmental causes of autism. Tens of millions of dollars are being focused on this. Why are the squeaky wheels unhappy? Because the squeaky wheels didn’t really mean “environmental causes”. That was only a code word for vaccines.

This level of tension is not just sad. It is detrimental to the progress of the IACC. There are a lot of autistics, parents, professionals and organizations who are interested in working with the IACC. Why spend any more effort on the groups that have declared war?

(note, I made a number of changes in this piece shortly after publishing it)

It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA
. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.