Maternal Infection Requiring Hospitalization During Pregnancy and Autism Spectrum Disorders

4 May

One known possible environmental cause of autism is rubella infections in the mother during a pregnancy. This can lead to a condition called “Congenital Rubella Syndrome”. Many with CRS have very significant disabilities, including intellectual disablity and autism.

The epidemiological team at Aarhus, Denmark, has taken this one step further and looked at maternal infections in general. What they found was that viral infections in the first trimester and bacterial infections in the second trimester are associated with a roughly 3 times greater risk of autism for the child. The infections noted were severe enough to warrant hospitalization.

Maternal Infection Requiring Hospitalization During Pregnancy and Autism Spectrum Disorders.
Atladóttir HO, Thorsen P, Ostergaard L, Schendel DE, Lemcke S, Abdallah M, Parner ET.

Exposure to prenatal infection has been suggested to cause deficiencies in fetal neurodevelopment. In this study we included all children born in Denmark from 1980, through 2005. Diagnoses of autism spectrum disorders (ASDs) and maternal infection were obtained through nationwide registers. Data was analyzed using Cox proportional hazards regression. No association was found between any maternal infection and diagnosis of ASDs in the child when looking at the total period of pregnancy: adjusted hazard ratio = 1.14 (CI: 0.96-1.34). However, admission to hospital due to maternal viral infection in the first trimester and maternal bacterial infection in the second trimester were found to be associated with diagnosis of ASDs in the offspring, adjusted hazard ratio = 2.98 (CI: 1.29-7.15) and adjusted hazard ratio = 1.42 (CI: 1.08-1.87), respectively. Our results support prior hypotheses concerning early prenatal viral infection increasing the risk of ASDs.

Transcripts of the Rashid Buttar hearings–a peek at how alternative medicine treats autistic children

4 May

Dr. Rashid Buttar was recently reprimanded by the North Carolina Medical Board. The reprimand was basically a slap on the wrist. A weak one at that.

The inquiry into Dr. Buttar discussed a number of his patients. One, patient E, was autistic. Dr. Buttar has allowed us to read about his practice by posting the testimony from the hearings.

This, from the opening statements for Dr. Buttar’s hearing:

Patient E is a pattern-in-practice patient. Patient E is an eight-year-old school girl who is severely autistic. Her mother contacted the Board after receiving a solicitation from Dr. Buttar to support him in this matter.
Like the ?- like the cancer patients, Patient E’s mother came across information that Dr. Buttar could help her child’s autism. And without ever seeing the doctor, without ever traveling to North Carolina, Patient E was sent a kit to ?- to basically self-administer a chelation therapy on her own daughter.
And when things started going ?- deteriorating for Patient E, Patient E’s only interaction with Dr. Buttar was through his nurse practitioner or other staff members in his office.
And the nurse practitioner who essentially, from the medical records, as you will see, made all decisions about the treatment and diagnosis of this child’s autism across state lines without personally seeing the patient, has no formal training in autism or oncology, much like Dr. Buttar who does not have any formal training in oncology or autism.
Yet, nonetheless, they convinced Patient E’s mother to take the child off of her medication so that he can apply a transdermal chelation cream on the child. A cream, not so coincidentally, that is developed and invented and sold directly by Dr. Buttar to his patients.
The mother did as instructed and took her daughter off her medication and applied Dr. Buttar’s transdermal chelation cream. Her daughter began to deteriorate. The child began to have violent tantrums. She couldn’t leave the house or attend school. During the weeks and months as the child deteriorated, Dr. Buttar never followed the child.
And when the mother did not get a satisfactory responses to her concerns, she called the office, made an appointment to see Dr. Buttar and drove her family to North Carolina. However, when she got to North Carolina, she did not see Dr. Buttar, only the nurse practitioner.
And the result of that meeting was that the nurse practitioner attempted to convince the patient ?- the patient’s mother that the child needed to be converted to a more aggressive intravenous form of chelation therapy.
The evidence will show that Patient E’s situation mirrors that of the other patients. Little or no physician involvement with the patient. Patients are seen primarily, if not exclusively, by the nurse practitioner. The patients have serious illnesses and Dr. Buttar and his nurse practitioner have no formal training in those illnesses.
The patients are prescribed expensive treatments that come straight out of their pocket because insurance does not pay for the treatments. The treatments are arbitrary, one size fits all. They have no basis or evidence of science. The therapies are ineffective and not been subjected to clinical trials and are potentially unsafe.

Dr. Buttar did not see the patient. She was in a different state, after all. But, her mother drove her to North Carolina to see Dr. Buttar and he still didn’t see her?

Without seeing her, he took her off her other medications and gave her his own–and she became worse.

Here are sections from the actual testimony.

Q And your daughter never made a personal visit to Dr. Buttar’s office prior to these treatments?
A That’s right.
Q When you had these telephone consultations with Dr. Buttar’s office, did ?- was it with Dr. Buttar?
A No.
Q Who was it with?
A With Jane Garcia.
Q And who is Ms. Garcia?
A I understand her to be his nurse.

Dr. Buttar was not in contact with the family. His nurse practitioner was handling the case. Remotely. Without seeing the patient.

Q Okay. Did Ms. Garcia ever make any recommendations about what to do with your child’s medication she was presently on?
A Yes. She insisted that we remove my daughter from the medication or they would not pursue the treatment.
Q What medication was your daughter on?
A Lexapro for anxiety ?-
Q And ?- and how long did ?- how long had your daughter been on Lexapro?
A About a period of a year.
Q And who prescribed that Lexapro?
A Her local pediatrician.
Q Did Dr. Buttar’s office consult with your local pediatrician when they recommended that she be taken off Lexapro?
A No, they did not.
Q And at some point what happened to your daughter after she started ?- after you started self-administering this chelation cream?
A Initially, it was uneventful, but she began to deteriorate, regress is how it’s referred to, and the regression was extremely significant. We were unable to even get her to come out of the home when she had previously been very social and happy. She wouldn’t wear clothes. She was no longer sleeping through the night. She wasn’t eating properly and she was extremely restless.
Q Okay. And did you consult Dr. Buttar’s office about these issues?
A Absolutely.
Q And what was the response?
A That we just needed to continue because this was to be expected, that she was moving metal and that we just needed to keep doing what we were doing.
Q Okay. And ?- and did you continue to do that?
A Yes.
Q And at some ?- and how did your daughter respond even after you continued the ?- the treatments?
A She just continued to get worse.
Q And at some point did ?- what did you do after that?
A Well, we had made an appointment to come to the office in person and we had hoped at that point, with an in-person physical examination by the doctor, we would get some remedy and advice for the significant amount of deterioration we were experiencing.

Dr. Buttar’s office pulled the young girl off of her anxiety medication. They had the family apply a trans-dermal chelation cream. The girl started to “deteriorate”

Q And I’ll read to you a note and ask you to comment. It says: Discussed plan with Jane, concur on issue regarding Lexapro, reassess patient that worsening is to be expected due to Herxheimer’s response and due to mobilization. Due to age consider IV challenge for best metal yield.
Is that when you talked ?- is that when you and Dr. Buttar’s office began talking about ?-
A I’m sorry, can you repeat that? My phone calling interrupted.
Q I’m sorry. It says: Discussed plan with Jane, concur on issue regarding Lexapro. Is that when you had a conversation about taking your child off Lexapro?
A Yes, but I hope that’s not referring to me concurring.
Q Okay. And above that there’s a typed note that says: Plan to wean off Lexapro, discussed with Dr. Buttar.
But is ?- were you having conversations with Ms. Garcia to take your child off Lexapro and then start this chelation therapy for your child’s autism?

Dr. Buttar suggested a “challenge” chelation test. Here is what the Americal College of Medical Toxicologists has to say about “challenge” testing:

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.

I guess I am curious as to why Dr. Buttar thought an IV chelation was needed for the challenge. If his trans-dermal cream chelates, shouldn’t that be sufficient?

Q I’m sorry. It says: Discussed plan with Jane, concur on issue regarding Lexapro. Is that when you had a conversation about taking your child off Lexapro?
A Yes, but I hope that’s not referring to me concurring.
Q Okay. And above that there’s a typed note that says: Plan to wean off Lexapro, discussed with Dr. Buttar.
But is ?- were you having conversations with Ms. Garcia to take your child off Lexapro and then start this chelation therapy for your child’s autism?
A Yes, we had discussed it twice.
Q Okay. And ?- and then you began the autism treatments in January, correct?
A Correct.
Q And how did the materials get to you?
A By the mail.
Q And ?- and was there any lab testing involved?
A Yes, routine lab testing was urine, stool, hair.
Q And who did this lab testing?
A Either we did or if it required a blood draw, a local phlebotomy clinic.
Q And all this was occurring in Michigan?
A That’s correct.
Q And when your daughter got the chelation cream, who administers that?
A We did, the parents.
Q And how did you do it? Did you do it pursuant to instructions from Dr. Buttar’s office?
A Yes.
Q And ?- and all this is occurring without you ever coming to North Carolina to see Dr. Buttar or his nurse practitioner?
A That’s correct.
Q Did you have to send money to Dr. Buttar’s office before these materials were sent to you?
A Yes.
Q How much money did you send?
A The initial was right at $3,000.
Q Okay. You talked about your daughter deteriorating and then you said you made an appointment to see Dr. Buttar. Approximately when was that?
A Approximately April.
Q And what happened after you made that appointment?
A We were ?- we did another round of testing that was expected to arrive in the office prior to our visit for a review on that and other than that, we simply prepared for the trip.
Q Okay. When you got to North Carolina what ?- did you go to Dr. Buttar’s office?
A Yes.
Q Was he there?
A No, he was not.
Q Who did you see?
A Ms. Garcia.

Yes, Dr. Buttar charged $3,000 for them to work with his nurse practioner. They made an appointment to travel from Michigan to North Carolina (a distance of over 800 miles) and Dr. Buttar did not see them. His nurse practitioner saw them and did not examine the patient:

Q (By Mr. Jimison) Okay. Did you have a meeting with Ms. Garcia?
A We did.
Q Did Ms. Garcia examine your child during that meeting?
A She was in a room, but she didn’t have an examination, no.
Q Okay. And what was the result of that meeting with Ms. Garcia?
A The large part of the meeting was the — for lack of a better word — sell — to first do IV chelation.
Q And ?- and did you do that?
A No, we did not.
Q And why not?
A My daughter was already significantly deteriorating and appeared to be very sick and there was no way we were going to go get a more aggressive form ?-
Q Okay.
A?- when we haven’t even seen the doctor.
Q And how is your daughter doing now?
A She’s fine, she’s much better.

The young girl is doing much better since leaving Dr. Buttar’s care.

I’ve kept the commentary to a minimum. Take a read. Tell me what you think. Take a look at the actual transcripts and let me know if I’ve been cherry picking.

Frontline’s Vaccine War episode ignites…well, a war of words

3 May

I first heard about the Frontline episode on “The Vaccine War“, it was from supporters of Jenny McCarthy. They were online telling us all about this upcoming episode and even providing links to where we could order the DVD.

Times have changed.

The show aired and it was not about how Jenny McCarthy and the rest are right and that vaccines cause autism. Jim Carrey had made a statement a while back, “We aren’t the problem. The problem is the problem.” Aside from the fact that it is a very strange way to phrase what he wanted to say, Frontline showed that, yes, indeed, you are the problem.

The night that The Vaccine War aired, Dr. Jay Gordon (Jenny McCarthy’s pediatrician) blogged about how his interview was left out. Jenny McCarthy followed shortly afterwards. Both were on the Huffington Post. Dr. Rashid Buttar was also interviewed and not shown. He took to a free press release to express his opinion.

Since then, many people have been claiming that Frontline should have given more time and weight to the vaccine-causation side. I guess representatives from a “Parent Founded, Parent Led” organization are not enough weight. They need the opinions of some doctors. As Kim at the Countering Age of Autism blog points out, the Age of Autism blog put their piece complaining about Frontline twice. AoA just changed the title and a bit of the introduction.

The editors of the Frontline episode have responded to the criticisms that some interviews were not aired:

Many thanks for your feedback on the program. FRONTLINE went to considerable lengths to include a wide range of viewpoints, even in the face of very strong scientific evidence against the hypothesized autism link to MMR and thimerosal. Despite the consistent negative epidemiology and the definitive verdict of the federal vaccine court, we included views from people who wanted more and different studies. The program also gave a great deal of time to the arguments of vaccine hesitant parents who think the CDC schedule is bloated. The companion FRONTLINE website contains full interviews with different stakeholders, including Dr Robert Sears, who promotes an alternative spread out vaccine schedule. The website also hosts a robust public conversation where a full range of viewpoints are being aired and engaged.

When making long form documentaries like FRONTLINE, it often happens that some interviews don’t make it into the finished program. Several interviews failed to make the final cut of “The Vaccine War”–not just yours but also interviews with contributors who support the CDC vaccine schedule.

One interview which did not air was that of Arthur Allen. He has commented on a few blogs. Not complaining about his interview being cut, but about people like Dr. Jay who don’t understand that in journalism these things happen. Interviews get cut.

That all said, let’s consider the argument that Frontline should have aired more of the vaccine-skeptic viewpoint. That people like Rashid Buttar should have been given more air time. Dr. Buttar, who was recently reprimanded by his state’s regulatory agency. Dr. Buttar who has used urine injections on autistic children.

For those who would like to have seen more of the opinions of such doctors, consider if Frontline does another episode entirely. This time, instead of “the Vaccine War”, they consider a show on “Curing Autism”, showing alternative medical practitioners.

I bet at this point many in the biomed community are saying, “yes!”

I put it to them that they didn’t learn their lesson. There is no good evidence behind the alternative medicine used in autism. Just like they thought that “The Vaccine War” was going to finally tell their story, another Frontline episode would not go their way. Yeah, it would tell their story, just as The Vaccine War did.

Let me put it another way. Think of two short words….Trine Tsuderos. I could have just as easily said Pat Callahan, as she worked with Ms. Tsuderos on the articles at the Chicago Tribune, but somehow it is Trine who gets the attention. It is her name that calls up the memories.

For those asking “Trine who?”, Ms. Tsuderos and Ms. Callahan wrote a series of articles for the Chicago Tribune. One article should give you an idea of how that series went: Autism treatments: Risky alternative therapies have little basis in science.

You see, the team of Callahan and Tsuderos took a look at alternative therapies and gave some balance–they asked the experts in areas such as neuroinflammation in autistics whether the alt-med practitioners were correctly applying the science. They weren’t.

So imagine if you will, Fronline putting Dr. Jay, Dr. Bob, Dr. Buttar’s interviews on the air. Together with Dr. Geier and his “lupron protocol”. Together with Prof. Boyd Haley and his industrial chelator turned nutritional supplement. Together with people “treating” neuroinflammation before they know whether it is harmful or beneficial.

Consider that team. Then consider the responses from experts in medical toxicology. Experts in neuroinflammation. Experts in hormones and autism.

Consider how that would play out before the American public.

It would not go well for the alternative medical community. Not because of any bias, but because their “science” is woefully poor.

High powered vistors to the IACC meeting

3 May

The Interagency Autism Coordinating Committee met last Friday. The agenda included talks by Department of Health and Human Services secretary Kathleen Sebelius, National Institutes of Health director Francis Collins and White House Staffer Mike Strautmanis.

Let’s put this in some perspective. Secretary Sebelius is one step down from the President of the United States in the Executive Branch of government.

The IACC is already chaired by the director of the National Institute of Mental Health, Dr. Thomas Insel. Dr. Insel holds a rather high level position to be chair of this committee, indicating a strong commitment to the IACC. Dr. Collins would be, in effect, Dr. Insel’s boss. His presence at the IACC meeting is significant.

The White House sent Mike Stratmanis is chief of staff to Valerie Jarrett, who is one of President Obama’s senior advisors. Mr. Stratmanis is also the father of an autistic child.

The Federal members of the IACC include a number of people at the director level in the NIH and elsewhere.

I think it is safe to say that autism research has the attention of the U.S. government.

The IACC is the focus of a lot of scrutiny and a lot of pressure. Given the importance of the IACC’s mission, some pressure and scrutiny is very much warranted. I think one can be critical of the IACC and its members–I’ve done so here on this blog. But, I think it is important for the discussion to remain respectful and factual. Often the discussion has, well, gone past those boundaries.

The IACC and Dr. Insel became part of the “enemy” to many in the online parent community when they decided to not fund vaccine-causation research.

Yes, autism research and the IACC have the attention of powerful people. This was very important last year when the President allocated large amounts of economic stimulus money to autism research. The fact that the IACC had a Strategic Plan in place to justify this expenditure should go down as one of the successes of that committee. Without the Plan, it is very possible that the Stimulus money might not have been applied to autism research.

Next year comes a major date for the IACC. The Combating Autism Act has, as most governmental programs do, a “sunset clause”. Read the Act and you will find this phrase repeated: “Sunset- This section shall not apply after September 30, 2011.”

Read the proposed budget for autism research–the final year is 2011.

I doubt that the IACC will be dissolved and that autism funding will cease in 2011. I believe autism research is a good investment for the American people and should continue. But it is time to admit to ourselves that we, the autism communities, are not entitled to this support. It can be taken away or reduced.

Finding common ground at the IACC

1 May

The Interagency Autism Coordinating Committee (IACC) met Friday. New members were introduced, including Ari Ne’eman of the Autistic Self Advocacy Network.

The autism communities are far from unanimous in goals and methods. Given the makeup of the IACC, consisting as it does of governmental agencies plus public members of organizations that have been highly critical of each other, one might wonder if it anything could get accomplished.

But, in the end, most groups have more than a single goal. And, if you remember back to your set theory lessons, that leads to intersections–overlap–common ground.

I was reminded of this watching the IACC meeting. I could only watch bits and pieces during the day. One standout part of the morning came when Jim Moody of the National Autism Association gave a public comment talking about issues of safety, elopement, drownings–preventable deaths of autistics young and old.

Towards the end of the meeting I listened to a number of people refer back to this presentation. Amongst these commenters was Ari Ne’eman. Mr. Ne’eman obviously took the idea seriously and was calling for serious consideration of how this could be implemented into the Strategic Plan, calling for input from the services subcommittee.

I know the idea of safety are not new to Mr. Ne’eman. I contacted him recently when I was preparing a piece, Search and Rescue and autistics.

The members of the IACC span a wide diversity of ideas and viewpoints. Diversity, that’s a good thing.

But, working together for the common good: that’s common ground. Ideas that span diverse organizations and viewpoints. That is a very good thing.

Interagency Autism Coordinating Committee welcomes new members

30 Apr

The Interagency Autism Coordinating Committee (IACC) is a U.S. government committee which oversees autism research activities of the various U.S. agencies. The committee is made up of a representatives of those agencies plus members of the public.

The current public members are:

Lee Grossman
President and CEO
Autism Society

Yvette M. Janvier, M.D.
Medical Director
Children’s Specialized Hospital

Christine M. McKee, J.D.

Lyn Redwood, R.N., M.S.N.
Co-Founder and Vice President
Coalition for SafeMinds

Stephen M. Shore, Ed.D.
Executive Director
Autism Spectrum Consulting

Alison Tepper Singer, M.B.A.
President
Autism Science Foundation

Here is the announcement for the new members

Secretary Sebelius Announces New Members of the Interagency Autism Coordinating Committee

Health and Human Services Secretary Kathleen Sebelius announced today the appointment of five new members to the Interagency Autism Coordinating Committee (IACC), a federal advisory committee created in an effort to accelerate progress in autism spectrum disorder (ASD) research and services.

The committee is composed of a diverse group of federal officials from HHS agencies and the Department of Education, as well as public members that include people with ASD, parents of people with ASD, and leaders of national ASD advocacy and research organizations.

In January 2009, the IACC released its first strategic plan for autism research. The IACC released a second edition of its strategic plan in January 2010.

“Today I am pleased to announce new members of the IACC, who will bring additional points of view and expertise to the committee,” Secretary Sebelius said. “I look forward to hearing from the committee members on important matters that affect people with autism and their families as we continue our efforts to address this urgent public health challenge.”

ASDs are a group of developmental disabilities that cause major social, communication and behavioral challenges with symptoms that present before age 3. ASDs affect each person in different ways and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. The Centers for Disease Control and Prevention estimates that an average of 1 in every 110 children in the United States has some form of ASD.

For more information on the IACC, visit http://www.iacc.hhs.gov/

New Members of the Interagency Autism Coordinating Committee

Geraldine Dawson, Ph.D.
As chief science officer for Autism Speaks, Dr. Dawson works with the scientific community and stakeholders to shape and expand the foundation’s scientific vision. She also is a licensed clinical psychologist with a research focus on early detection and intervention, early patterns of brain dysfunction and the identification of biological markers for autism genetic studies. Dr. Dawson also serves as research professor of psychiatry at the University of North Carolina at Chapel Hill, adjunct professor of psychiatry at Columbia University and professor emeritus of psychology at University of Washington.

Gerald D. Fischbach, M.D.
Dr. Fischbach is the scientific director for the Simons Foundation where he oversees the Autism Research Initiative. He has spent his career as a neuroscientist studying the formation and maintenance of synapses, the junctions between nerve cells which allow signals to be transmitted. Before joining the Simons Foundation, Dr. Fischbach served as the Director of the National Institute of Neurological Disorders and Stroke from 1998 to 2001 and as the Executive Vice President of Columbia University Medical Center and Dean of the faculties of medicine from 2001 to 2006.

Ari Ne’eman
Mr. Ari Ne’eman is the founding president of the Autistic Self Advocacy Network, where he works to increase the representation of autistic people in public policy discussions. He is an adult on the autism spectrum and a leading advocate in the neurodiversity movement. Mr. Ne’eman has served on the New Jersey Adults with Autism Task Force and the New Jersey Special Education Review Commission, where he authored a minority report advocating legislative action against the use of aversives, restraint and seclusion. He is a board member of TASH, an advocacy group for people with disabilities, and is involved with the Maryland Coalition for Inclusive Education.

Denise D. Resnik
Denise Resnik is the co-founder and board development chair of the Southwest Autism Research & Resource Center (SARRC). She is the mother of an 18-year-old son with autism. Ms. Resnik serves on the Autism Speaks Family Services Committee and Advancing Futures for Adults with Autism (AFAA) Steering Committee. She participated in the 2006 NIMH Autism Matrix Review and the IACC Scientific Workshops to develop the IACC Strategic Plan and subsequent updates.

Marjorie Solomon, Ph.D.
Assistant professor of Clinical Psychiatry at the University of California, Davis

Dr. Marjorie Solomon is an Assistant Professor of Clinical Psychiatry in the Department of Psychiatry and Behavioral Sciences at the University of California, Davis. She serves on the Faculty of the Medical Investigation of Neurological Disorders (MIND) Institute and the Autism Research Training Program where she conducts research on a social skills training intervention for high-functioning children with ASD, incorporating parents and siblings in the research. In addition to her clinical research work, Dr. Solomon studies cognition and learning in high-functioning individuals with ASD.

Ari Ne’eman, autistic adult, serving on the IACC

30 Apr

The videocast of today’s IACC meeting has gone live, and I’m pretty sure I recognize Ari Ne’eman of the Autistic Self Advocacy Network (ASAN) at the table.

Stephen Shore is already serving on the IACC, so this brings to (at least) two autistic adults on the IACC. I saw “at least” because I don’t know who else new may have been added to the IACC.

Interagency Autism Coordinating Committee live broadcast

30 Apr

The Interagency Autism Coordinating Committee is starting.

The purpose of this IACC meeting is to welcome the new members of the IACC and to discuss IACC activities including the 2009 IACC Summary of Advances and the 2009 Portfolio Analysis. There will also be presentations on the Autism Treatment Network, autism in the DSM-V, stem cell research, nonverbal autism and comparative effectiveness research.

You can find the broadcast video here

Conference call information:

Conference Call: USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Autistic child belted to chair at school

30 Apr

Here’s one of those news stories you hate to read–a mother came to her child’s school for a meeting and found her son belted to a chair.

Mom: Son With Autism Tied Up By Teacher’s Aide

From the story:

IPS Special Education Director Robb Warriner said the aide who belted the boy to the chair made a very poor decision, and that the aide had been disciplined.

You don’t get much detail, but there were three adults in the room, a teacher and two aides. Why only one was disciplined? Why the aide? Did the teacher try to stop the restraint?

Who deserves a seat on the IACC?

29 Apr

There is a lot of lobbying for a seat on the Interagency Autism Coordinating Committee. This committee’s job is to plan and coordinate research efforts in autism amongst the various U.S. governmental agencies involved.

Membership in the IACC is split between government employees representing these agencies and public members. It is the public membership that draws attention. Many groups would like a seat at that table. Generation Rescue has lobbied in the past for a seat one the IACC or, better yet, on an “autism advisory board” which would oversee even the IACC.

Katie Wright, board member of SafeMinds, the National Autism Association and Generation Rescue, has been rather vocal on the subject on their group’s blog. She has voiced an opinion that the public slots should go to people who represent groups with large constituencies. She was highly critical of one IACC parent member, claiming (falsely) that this parent was only on the IACC due to connections with Tom Insel (the IACC chair). While she has acknowledged her error, Ms. Write remained of the opinion that a mere parent does not belong on the IACC.

Given that the IACC is scheduled to announce new members tomorrow, I thought I would look at the membership requirements. The IACC membership is discussed in the Combating Autism Act, as follows:

(c) Membership-

(1) IN GENERAL- The Committee shall be composed of–

(A) the Director of the Centers for Disease Control and Prevention;

(B) the Director of the National Institutes of Health, and the Directors of such national research institutes of the National Institutes of Health as the Secretary determines appropriate;

(C) the heads of such other agencies as the Secretary determines appropriate;

(D) representatives of other Federal Governmental agencies that serve individuals with autism spectrum disorder such as the Department of Education; and

(E) the additional members appointed under paragraph (2).

(2) ADDITIONAL MEMBERS- Not fewer than 6 members of the Committee, or 1/3 of the total membership of the Committee, whichever is greater, shall be composed of non-Federal public members to be appointed by the Secretary, of which–

(A) at least one such member shall be an individual with a diagnosis of autism spectrum disorder;

(B) at least one such member shall be a parent or legal guardian of an individual with an autism spectrum disorder; and

(C) at least one such member shall be a representative of leading research, advocacy, and service organizations for individuals with autism spectrum disorder.

There is no mention that public members must all represent a substantial constituency at all.

My own opinion, for whatever that may be worth, is this. Public members on the IACC should

(a) represent the diverse viewpoints of the autism communities
(b) be willing to put in work on the committee
and
(c) be able to work as a part of a team on the committee.

Somehow, when groups like SafeMinds, Generation Rescue, the National Autism Association and the Autism Research Institute belittle IACC members with blog posts depicting them as “baby eaters“, I doubt whether they meet criteria in [c]. But, hey, that’s just my opinion. The opinion of someone who needs the IACC to work.

That said, is a constituency needed on a governmental committee? I would argue not. Perhaps the most well known public member of a US governmental committee was the late Prof. Richard Feynman. He served on the committee to find the cause of the destruction of the space shuttle Challenger. Prof. Feynman didn’t represent any constituency. He wasn’t a part of the space program. He was just a guy who got things done.

But, if we are going to talk about which big groups deserve to be on the IACC, we should recall that the IACC exists to manage a research plan. Groups that are involved in research should have a seat at the table.

You may recall that last year I discussed Autism research funding: who is paying and how much?. The IACC had put together a document on nationwide (public and private) research funding into autism. It turns out that the largest private group, in dollars, funding autism research is the Simons Foundation. They even outspend Autism Speaks, whom many would assume would be the largest autism organization. Heck, the Simons Foundation outspends the CDC.

Autism Funding by Agency

Another autism organization that doesn’t get heard much on the blogs is the Marks Foundation. Last year they committed $29M to start an autism center for all ages at Boston General Hospital.

It will be interesting to see who the new members are on the IACC. The world is made up of a lot more than just the vaccine-causation groups. Groups who are not as big as they would like us to think. The vaccine-causation groups are already well represented by Ms. Lyn Redwood. I’ve never heard anyone say that she doesn’t represent their ideas ably.

As noted above, there is one parent on the IACC who is not affiliated with any organization. I find this wholly appropriate and would not be surprised nor put off should the IACC appoint a second unaffiliated person–be they autistic or parent. Frankly, another autistic would seem appropriate. I thought Wolf Dunaway was very impressive when he served on a subcommittee.

Tomorrow morning new members will be welcomed. They have my gratitude for being willing to serve in what is an unnecessarily contentious position.

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