Tuesday, March 31, 2009


This past November 4th, I sat in my living room and watched an incredible moment unfold on television. The first African American to be elected President was giving an electrifying speech from Chicago’s Grant Park. I thought of just how far our nation had come in my lifetime. And I thought of John Hope Franklin.

I was raised as a white boy in the Deep South, but my parents did their best to keep me from growing up with the prejudices that had infected that part of the country ⎯ and the rest of the country as well ⎯ for too long. It was through my parents that I met John Hope Franklin.

Dr. Franklin, grew up in Oklahoma, and was raised to overcome the prejudices that would otherwise stand in the way of success. He attended Fisk University and Harvard, earning his Ph.D. in history in 1941. He went on become one of the eminent historians of his time, and even served as a consultant to the legal team arguing for the plaintiffs in the landmark desegregation case, Brown vs. Board of Education. He strove to tell the complete story of America, especially the lasting legacy from the early nation’s reliance on slavery. For his efforts, he was awarded a richly deserved Presidential Medal of Freedom in 1995.

I didn’t really know that man: the famous John Hope Franklin. The John Hope Franklin I knew was a warm and courteous man who was devoted to three things: his family, educating, and growing beautiful orchids. He and my father, himself an eminent historian, may not have been necessarily close, but they shard a friendship having its roots in a deep mutual respect for each other as historians and writers. In the few times I got to speak to Dr. Franklin, I came to share my father’s respect for a remarkable man.

One experience with John Hope Franklin stands out particularly in my memory. Dr. Franklin and his wife, Aurelia, came to New Orleans for a professional meeting. My mother offered to show them some of the sites, and she mentioned that she often took out-of-towners to see some of the nearby plantations. Mom immediately winced, realizing she had just volunteered to take the nation’s preeminent authority on the evils of slavery to a sugar-coated version of the scene of the crime. Dr. Franklin graciously declared that he would find such a trip to be interesting. I’m not sure if my mother thought including her youngest son, then in high school, would offer some level of emotional support for her, or if she merely thought I would get a little enlightenment courtesy of John Hope Franklin. In either event, I went along.

I don’t recall which plantation we were at, or exactly what was being said. I do recall that the tour guide was well into the Gone With the Wind version of history when I saw a slight smile come to Dr. Franklin’s face. He raised his hand, and proceeded to deliver a five-minute lecture that destroyed all of the myths that had just been thrown at us. Although it was indeed a lecture, it was delivered without a trace of anger, bitterness, condescension, or accusation. This was simply another opportunity for John Hope Franklin to do what he loved best: educating. He did it with a soft voice that demanded attention.

I looked at the others in the room. The tour guide looked impatient and upset that someone had gotten her off of her script. The other people taking the tour, however, looked thoughtful. None of them knew just who this gentleman was, who looked distinguished even in walking shorts and a sport shirt. It was clear, though, that he was someone who merited attention.

That was the key to John Hope Franklin’s genius as an educator. He was able to reveal the truth about the most inhumane acts, while never denying the humanity of those who benefited from the evil institution. And that drove the point that much farther toward home.

Dr. Franklin has been quoted as saying, “My challenge was to weave into the fabric of American history enough of the presence of blacks so that the story of the United States could be told adequately and fairly.” For him, it was a simple matter of setting the record straight.

John Hope Franklin passed away last week the age of 94. I thank God he lived long enough to see the last election, an outward and visible sign of the progress he worked so hard for. I also thank God that I knew the man, even if it was only a slight acquaintance.

Sunday, March 29, 2009


To date, I haven’t written anything about the Sky Walker case. It’s been hard to know what to say; there are so many questions and so few answers. The whole situation is tragic on so many levels.

Now I feel a little guilty for not writing sooner about a mother and son who are both victims. (For a great explanation of what I mean, see this recent post by Kim Stagliano at HuffPo.) I don’t feel ashamed for ignoring the true tragedy, but I cannot deny not speaking out sooner, and that’s to my discredit.

Recently, Age of Autism posted the comments of Sondra Williams. For those unfamiliar with her, Ms. Williams is an adult on the autism spectrum. For far too long, however, she was diagnosed as being mentally ill, and was subjected to a torture of institutionalization and medication. She now takes to task ⎯ and properly so ⎯ all of us in the on-line autism community (whether we be in the cure or ND side of things) who simply didn’t want to face this situation squarely:
. . . So this story itself is of making me quite ill but what is of making me more ill is the way much on the various list turn their backs away from such stories, as if wishing it away but this could be of any of our sons, and how would we be to have felt if those in the autism community turned of their backs to our child in such cases and left of him vulnerable to the systems.

It sickens me to know of the heart of so many might have of compassion but not willing to discuss or be of proactive to this.

And Ms. Williams personal story carries a message for those who deny a connection between what happened and Sky’s condition: that is, to those who think all autism represents nothing more than a different point of view:
Autism is of so many things but often only to those who are of much higher functioning and or Asperger’s is it just a different frame of mind, but to me it has been of my hell much of life……the only things life powerfully teached me was the humans were to be avoided because they would cause of me great harm. My life grew up in mental wards designed for adults with mental illnesses and drug addictions and so it left me vulnerable to that situation and not appropriate for a child, Because of being of a female and also reacting to much abuse and neglect my presentation was of intermeshed and most were of not looking at autism in females so was of misdx much years much much year. And finally correctly dx with autism spectrum in 2001 and confirmed by 3 psychologist and 3 psychiatrist of autism. Not asperger’s type.

After the Katie McCarron murder, many in the cure community were rightly chastised for showing greater sympathy to Katie’s mother than to the victim. Some of the loudest of those accusers now seem to be oddly devoid of sympathy for anyone in the present tragedy. And that’s just wrong, as Ms. Williams points out:
Please do not let of them treat of him this way. Hims mother can in no way ever rest in a peaceful fashion as long as he is of not well. He is of being punished enough by removal of the home, not having hims main source of love and care being there for him, he has no awareness of where she is or why she is not coming and why he cant go home to the only place were all of hims life is. 

The sad is when one looks at the parents who murder their children of disabilities they are of often given less punishment towards them when they killed with intent and he not having the ability to be aware and did not do anything with intent is of punished by far more harshly.

Please read the complete post here. The tonight, say a prayer for both Gertrude Steuernagel and Sky Walker.

Sunday, March 08, 2009


Virginia has always had a special place in my heart. Although I grew up in Louisiana, I was born in Virginia, and spent many happy days visiting my grandparents up there. That’s why it hurts a little to find out their politicians play the same games that are played elsewhere. I always hoped they were above that sort of thing in the birthplace of presidents.

Over at Autism Online Today, Curt Linderman posted a couple of items out of the Old Dominion State that unfortunately rove that things are just as bad there as anywhere else

Like many states, there are efforts afoot to pass legislation to mandate health coverage for autism treatments. To get passed, however, the bill first has to be reported out of the subcommittee to which it was assigned. A convincing argument for the bill was put forth at a hearing, and the subcommittee’s response ⎯ or to be more precise, their lack of response ⎯ was breathtaking.
After what Lansdowne resident Pat DiBari called 45 minutes of “testimony and great questions and dialogue back and forth” there was “absolute silence” from the eight present subcommittee members, he said.

“Nothing. No action. Zero,” DiBari said Tuesday evening. “They chose not to vote. Families are stunned, outraged, disappointed, you name the emotion.”

The Delegate who introduced the bill, Republican Bob Marshall, was every bit as angry as the parents who are counting on the bill to have a chance of helping their children:
In a statement released Feb. 4, Marshall said the lack of action on the part of the subcommittee was a “display of complete indifference” and said he had told the members of the subcommittee who were present that “silence is not a morally acceptable response to this situation.”

Of course, state legislatures are not the only battle ground these days. Much is going on in the halls of Congress. I am planning to write more about that in the very near future, but for now, we’re just going to talk about the kind of representation Virginia is getting in Washington.

Again from Autism Online Today, we have a letter from Rep. Robert Wittman to a constituent who expressed concern about the plans to yet again run away from the idea of funding studies to determine whether the rise in ASD might be at all connected to the most sacred cow in the public health system. The Congressman’s letter is quoted here in its entirety:
Dear Friend:

Thank you for contacting my office regarding the Interagency Autism Coordinating Committee (IACC) and the Strategic Plan for Autism Spectrum Disorder (ASD) Research. I appreciate you taking the time to share your thoughts with me. I value your views on the important issues facing our Commonwealth and the Nation.

As you know, the IACC coordinates ASD-related research within the Department of Health and Human Services (HHS). The IACC also promotes federal and public collaborative efforts through public forums, educational initiatives and public outreach programs.

As you may also know, the IACC does not have a dedicated research program on vaccines and autism. The IACC noted limited funding resources and inconclusive scientific evidence as an important factor in this decision. You may be pleased to know, that the IACC proposed to pursue autism and vaccine research through existing research programs. I am committed to continuing the effort to review emerging scientific data concerning vaccines and autism.

I want you to know that on the judiciary front, the U.S. Court of Federal Claims ruled on February 12, 2009 that childhood immunizations containing Thimerosal, a preservative found in some inoculations and the measles, mumps and rubella vaccine, are not linked to autism. The court noted that scientific evidence from medical studies conducted in various countries have failed to demonstrate that Thimerosal-containing vaccines can contribute to immune dysfunction, autism or gastrointestinal dysfunction. For more information on the U.S. Court of Federal Claims' ruling, I encourage you to visit the court's website at: http://www.uscfc.uscourts.gov/node/5026.

Additionally, as Congress considers the funding levels for FY2010, please be assured that I will keep your views in mind as the House of Representatives considers funding for autism research in the FY2010 Labor, Health and Human Services, and Education Appropriations bill.

Thank you again for sharing your views and opinions with me. I am committed to serving you to the best of my abilities. If I can ever be of assistance to you or your family, please do not hesitate to call me at (202) 225-4261 or contact me online at: www.wittman.house.gov.


Robert J. Wittman
Member of Congress

The whole point of there being a federally funded study into the issue is to at least try to avoid the conflicts of interest that make everyone so wary of “existing research programs.” It’s hard to tell if Rep. Wittman understands that. He clearly doesn’t want to actually have to discuss the issue. He would rather issue letters that are the written equivalent of a pat on the head and an “off you go.”

Condescension has been elevated to an art form in American politics.

I sometimes think back to an experience I had in Louisiana many years ago. I got one of those newsletters put out by my representative in the State Legislature, which solicited my opinion on a number of issues. On at least one issue (it’s been long enough that I don’t even recall what it was), I had a very sharp disagreement with the stated position of this particular Representative. I noted that disagreement in the form, and mailed it back.

A couple of weeks later, I got a phone call from the Representative, who was calling from the floor of the Legislature during a lull in the “action.” We spent nearly 20 minutes in a very honest exchange, discussing the issue. By the end of our conversation, we both maintained our original views, but I felt as though I was dealing with someone who was willing to listen to the complete reasoning behind disagreement so he could re-examine his own views, as well as show the moral courage to face disagreement and fully explain his own reasons. A guy who didn’t have my vote when he first ran had it when he was up for reelection. Unfortunately, his honesty did not play so well with the rest of the district, and he lost his seat to someone who was more willing to play the “politics as usual” game.

On other occasions when I have let elected officials know my views, the responses I have received have been along the lines of what our friends in Virginia are now getting: either silence or condescension. Maybe it’s time we make it clear that we expect more. We always talk about that, but we never take the time to back up our views. We need to make it clear to our elected officials that we will no longer allow them to cop out. They should not fear losing our votes if they express honest disagreement, for they will surely lose those votes anyway if they run away from discussing the issues with those who put them into office.

I expect to write more about this kind of issue in the future. In the meantime, remember to maintain an air of decorum and respect when communicating with your elected officials (such as Rep. Wittman). To turn the tide, we must be taken seriously, and that means expressing your opinions in a serious and sober manner.

Sunday, March 01, 2009


The other day, Age of Autism posted an item about a recent article in Pediatric News. AoA labeled the article as “irony.” I have a few other descriptive terms for it, but the bounds of civility precludes their use here.

The Pediatric News article, by Dr. Barbara Howard, addresses the ongoing struggle many physicians have in convincing us that “all is well,” despite all that we have seen and learned.

Specifically, Dr. Howard is trying to give advice to her peers as to how they can regain a semblance of credibility as they attempt to tell us about the “abundance of research disputing the connection between vaccines and autism,” when at the same time the mainstream medical profession “still can’t fully explain to parents or even [themselves] why rates of autism are increasing at a rapid clip.”

Dr. Howard’s willingness to accept the conclusions from that “abundance of research,” without truly looking at how those conclusions were reached, is typical of the intellectual laziness that permeates not just medicine but other professions as well. In the legal field, we used to refer to such practitioners as being “head note citers.” Those were the guys who, when writing a brief, cited certain cases for points that were abbreviated in a “head note” inserted by editors from the legal publishing house. Yet when the judicial decision itself was read, it became crystal clear that the case was being wrongly cited. That’s how lawyers lose credibility with their audience (the court).

A similar loss of credibility occurs when doctors tell us that the potential connection we worry about was disproven by the Danish studies, in which the criteria for inclusion in the populations studied changed between the two groups being compared. And how can we believe in their professional judgment when they tell us that the Verstraeten study ¬⎯ which we know showed a link that was later lost after the Simpsonwood conference radically altered the parameters of the study, resulting in what the authors termed a “neutral” result neither proving nor disproving a connection ⎯ likewise stands as concrete evidence that there are no safety concerns.

Hey, I’m still convincible. All it would take is a little honest talk from a doctor armed with enough real science to refute the questions that have been raised. But what do I know. I’m just one of those lay persons Dr. Howard referred to when she wrote:
If their concerns are based on faulty logic or scientific confusion, remember that their theory could make perfect sense if you hadn’t studied microbiology, immunology, physiology, and metabolism, not to mention statistics.

There you have it: the irony. Once again, we’re subjected to the myth that the only people feeding this issue are the uneducated parents who really don’t understand science. Like so many others, Dr. Howard completely ignores the work of Boyd Haley, Jill James, Thomas Burbacher, and so many others. Although those scientists have not necessarily proven a definite connection, their work has raised serious questions to which mainstream medicine has not yet given any answers. And unlike the “abundance of research” Dr. Howard and others rely on, the work giving rise to those questions is in the nature of microbiology, immunology, physiology, and metabolism. What Dr. Howard relies on consists primarily on epidemiology: i.e., statistical analyses that often fall victim to the accounting principle of GIGI ⎯ garbage in, garbage out.

I don’t question Dr. Howard’s sincerity. My problem with her, and others like her, is that they are willing to use flawed logic and compromised science to prop up a program they believe in with the best of intentions. Dr. Howard’s motivation is obvious in her advice to the profession:
Finally, if we’re being perfectly honest here, we must admit to ourselves that we have a covert agenda when it comes to vaccines.

Vaccination protects individual children, but its real value is in mediating risks across populations.

Are we really prepared to tell Mr. and Mrs. Johnson that we do care about Susan, but we also have an obligation and a responsibility to consider societal benefits and risks in an ever-increasing ripple effect from our office door to the neighborhood, the community, the state, the nation, and the world?

This is the same crap we’ve heard from Paul Offit and his ilk over the years. But every time we hear them say something, it’s only hinted at. Their belief in the concept of “herd immunity” (a theory based upon the inherent unreliability of vaccines) is so strong that they feel the sacrifice of a statistically small set of children is acceptable to ensure a relatively small percentage decrease in the incidence of some diseases. That’s what they believe, but convincing us that our children may be part of a sacrifice is not easy. It’s far easier to give us the false reassurance that our fears are unfounded.

Sometimes I think these mainstream physicians picked up their sense of morality from Star Trek. Like many, I wiped away some moisture form my eyes at the end of Star Trek 2: The Wrath of Khan, when Spock sacrificed himself for his shipmates. That sacrifice was based on his logical conclusion that the needs of the many outweigh the needs of the few, or the one. That’s an awfully easy maxim to believe in when you aren’t the one or the few, or the one. But even more to the point, what made Spock’s sacrifice noble was that he willingly took it on. Our kids didn’t volunteer to be sacrificial lambs. There’s nothing noble about their sacrifice other than the courage with which they and their parents get through each day.

If the theory of herd immunity is sound ⎯ and that’s a might big “if” ⎯ I certainly understand that there are other parents who could just as easily say that I am suggesting their children be put at risk of being sacrificed. There are no easy answers to the question of whose needs are more important. To reach the correct answer, we need an honest dialog. Dr. Howard, however, thinks that is too difficult:
One of our many arguments in favor of vaccines has to do with the balancing of weighted risks and benefits, according to statistical models.

There’s a big disconnect here, because people in general, and even doctors, are not particularly good at making decisions when we’re given information in SAT-like formulas. (“This vaccine would reduce your chances of getting disease x by a certain percentage; disease x carries this percentage risk of serious sequelae or death; the vaccine carries this percentage risk of serious sequelae or death.”)

Try us doc. We’re really not as dumb as you think. We can have an honest discussion of the risks of not vaccinating, including the risk to other kids in society. But before we can have that discussion, you need to be willing to acknowledge that there just may be a potential for serious sequelae from not just a particular vaccine, but from rigid adherence to the recommended vaccination schedule. At the very least, you need to acknowledge that there is an open question needing further study. And that’s the hard part, isn’t it?