Monday, October 31, 2005


The first day of November, is designated by some denominations, particularly the liturgical churches, as All Saints Day. When we speak of saints, we may be speaking of either of two different kinds of people, depending on our point of view. One group includes those who have been formally canonized by the Church, having earned their halos, usually through intercessory miracles occurring after their very holy lives on earth. The second group consists of more ordinary souls who may not be formally recognized as saints, but whose lives and faith stand out as an example to us all. To some extent, the Church draws a distinction by designating the day after All Saints Day as “All Souls Day.” I tend to blur the distinction between the two "classes” of saints.

In New Orleans, where Roman Catholicism has shaped the culture, All Saints Day is taken pretty seriously. People flock to our unique above-ground cemeteries to clean their family’s tombs and vaults. (The more literal minded folks say this is in preparation for All Souls Day.) This year, that custom will take on an added poignancy because some of the cleaning is necessitated by damage from Katrina.

I don’t have any graves to spruce up, so I choose to observe All Saints Day by thinking fondly of the one real saint I knew: my mother. Okay, I know what you’re thinking; everybody thinks his or her mother is a saint. But my mother really is. (She even has one miracle, but that’s another story for another day.)

Betty Bursley was born to an old New England family, a direct descendant of Mayflower pilgrims. Her father was a landscape architect for the United States Park Service, and she grew up primarily in Cleveland and Richmond. Education was valued in the family, and my mother earned a degree in biology from Randolph-Macon Woman’s College. During World War II, she met and married a handsome lieutenant in the Army Corps of Engineers, Hugh F. Rankin. After the war, Dad went back to school, and wound up becoming a professional historian. Throughout graduate school and beyond, my mother worked (mostly clerical jobs), helped entertain Dad’s professional colleagues, served as Dad’s typist and most-trusted editor, and raised three sons. She was not only our mother, but was also the best teacher any of us ever had. There was little about the world around us that my mother could not explain and help us understand.

Eventually, the family came to New Orleans, where Dad joined the faculty at Tulane University. Faculty pay in the fifties being what it was, my mother needed a job, and she became the secretary for the newly formed Jazz Archive (now called the William Ransom Hogan Archive of New Orleans Jazz) at Tulane’s Howard Tilton Memorial Library. She took notes at jazz funerals and second-line parades, assisted the curators in conducting oral histories, and helped organized a priceless collection of recordings, sheet music, photographs, and memorabilia. She developed a passion for the music and a genuine love for the musicians. Despite no academic background in musicology, Mom eventually became an associate curator of the Archive.

After retiring from the Archive, my mother (by that time known as “Big Mama,” a nickname she acquired partly because Dad had been dubbed “Big Daddy” by his graduate students) took on several volunteer positions with various groups. In the early eighties, she heard about a fledgling community radio station, WWOZ, which needed volunteers. For the uninitiated, WWOZ plays a wide variety of genres, but specializes in the musical forms that help to define South Louisiana. My mother started out typing letters and stuffing envelopes, but somebody soon realized the resource they had, and she was thrown in front of a microphone. For the next several years, Big Mama hosted what became known as the “Moldy Fig Jam,” a popular 90-minute program of Traditional Jazz and Ragtime on Saturday mornings. Mom took enormous pleasure in sharing her love of New Orleans music, and included far more background on the musicians than could be found anywhere else on the radio dial. After decades of being known as Hugh Rankin’s wife, she was now an internationally known personality (WWOZ’s web feed has made it a world-wide favorite).

Of course, the fact that she was a nice person who had a knack for teaching others what she knew did not qualify her for sainthood. The remarkable thing about Big Mama was the nature of the lessons she taught. And the best way to explain that is to write about her parting lesson.

During a heart operation in the eighties, Big Mama received some tainted blood, and contracted Hepatitis C. It went undetected for years, until she eventually started having active liver disease. My mother expressed no bitterness, and she blamed nobody. She faced this problem as she faced everything in life, good or bad: with equal parts optimism and acceptance.

In late 1997, Big Mama’s liver began to fail altogether, and she spent the next few months alternating between improving and falling into hepatic comas. Whether she was conscious or comatose, my brothers and I, and often our wives, were at the hospital a lot: reading to her, helping to feed her, or just spending time. She had a spell in the middle when she was alert, happy, and as full of life as anyone could hope to be. We talked for hours about lots of things: philosophy, religion (Mom was a lifelong Presbyterian; I am an Episcopalian), music, politics, and whatever happened to be going on in the world. It was important small talk, because no matter what plans we made, the unspoken reality was that she probably wasn’t going to be coming home.

Sure enough, Big Mama fell into another hepatic coma, from which she clearly wasn’t going to come out. A few days before she died, I got out the Bible from which we read during her last alert interval. Struggling to figure out what to read to her, I went to the assigned readings of the day listed in the Episcopal Book of Common Prayer I had left in her room. One of the readings was the familiar exhortation by St. Paul in his first letter to the Corinthians:
If I speak in the tongues of mortals and of angels, but do not have love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have faith, so as to remove mountains, but do not have love, I am nothing. If I give away all my possessions, and if I hand over my body so that I may boast, but do not have love, I gain nothing.
Love is patient; love is kind; love is not envious or boastful or arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice in wrongdoing, but rejoices in the truth. It bears all things, believes all things, hopes all things, endures all things.

There could be no more fitting passage to describe my mother’s relationship with her family, her friends, and the world around her. I looked up and saw my mother sitting upright in bed nodding her head. Her meaning was clear: “That’s it; that’s all you need to know.” She put her head back onto her pillow, still beaming a beatific smile. That was the first time in almost a week that her head had been off of the pillow or that any expression could be discerned on her face. It was the last time she communicated in any way.

My mother passed away on February 24, 1998, as I held her hand and my wife, Sym, stroked her hair. (In a last act of kindness, Big Mama held on until Sym could get there so I wouldn’t be alone.) Of all days, it was Mardi Gras morning. We were at Touro Infirmary, a hospital just a block off of St. Charles Avenue in New Orleans. Along the Avenue, families were gathered to celebrate life as it can only be celebrated in New Orleans. I like to think Big Mama, hoping to second line one last time, wandered around until she found the Irish Channel Corner Club making their annual “march” downtown to the beat of the Paulin Brothers Band. I can only hope the band was playing “When the Saints Go Marching In.”

Thursday, October 27, 2005


One of the reasons I write this blog is to hear challenges that make me reconsider an opinion. I maintain that nothing is worth believing in if it cannot withstand questioning. After writing “Why,” I found myself in a lively dialog with Michelle Dawson who left comments to the post. She invited me to review some materials, which I did. Although those materials, impressive as they are, do not convince me that my wife and I are wrong in responding to our son’s ASD with a biomedical intervention, the process has made me think a lot more about the decision-making process.

My post was part of an unplanned "blog swarm" that Ginger, Kyra, and I had addressing the propriety of our decisions to attempt “curing” our children. Ginger posed the question of whether an intervention may not only reduce the adverse impact of autism, but also change the child’s personality. Ms. Dawson feels that the question is irrelevant:
Autism has nothing to do with personality, any more than gender or sexual orientation or handedness do. That doesn’t mean that parental interventions against the gender, orientation, or handedness of their offspring--for whatever reason--are just fine.
. . .

This whole non-argument arises from a lack of understanding of what autism is, of how autistic brains are different, and of what this means with respect to cognition (perception, attention, memory, intelligence, and learning). Notice this has nothing to do with personality.

My response to Ms. Dawson was to restate Ginger’s question by asking if an intervention -- be it biomedical or behavioral -- ever diminished the cognitive gifts in an autistic child. I then arrogantly provided a presumptive answer that I “certainly don't think we'll find anyone say they were diminished by an intervention.” After thinking about it some more, I am not so sure about the impact. But I am still sure of the decision my wife and I made.

Autism is a complex thing that defies any real understanding. Mental health professionals define autism, Aspergers, and PDD-NOS by a constellation of deficits, a construct that may be too simplistic. As a definitional tool, however, the DSM-IV-TR criteria are probably more accurate -- and are certainly more widely accepted -- than the proposition that autism is nothing more than a different way of thinking, in essence a genetic state of being.

In a comment to my last post, Anne made this point:

I think a good example for you might be perseveration -- defined in the criteria as “restricted repetitive and stereotyped patterns of behavior, interests, and activities.” It is treated as a dysfunction, with a couple of reasons usually being given: it “interferes with learning” and it bugs other people, especially when the special interest is one that is not widely shared. Interventions are deployed to discourage perseveration.

Yet maybe perseveration is part of autistic cognition. Maybe autistic kids learn better by engaging in perseverative activities than by learning to suppress their desire to do them. Learning driven by intense interest is much different (I would say better) than learning driven by forced compliance.

Ms. Dawson and Anne focus on cognitive differences, and they may be correct in saying that is a part of autism. But the clinical definitions of autism are not based on cognitive differences, but primarily by social deficits.

The parents who practice biomedical interventions, and I am certainly in that number, look upon autism spectrum disorders in primarily negative terms. Members of the neurodiversity community tend to look upon it in a more positive, or at least neutral, light. Perhaps we all are right, and we all are wrong.

My friend on the other side of the argument (and other side of the ocean), Kevin, likes to say we are doing nothing but treating comorbidities. Perhaps he is right, but many of us have seen enough to believe that treating those comorbidities seems to reduce the severity of the deficits by which our children have been diagnosed as being autistic. If those deficits are completely remitted, can we really call them comorbidities? Frankly, I don’t care what we call them. The more serious question asks whether positive traits, or “gifts,” or so entwined with the same processes that create the deficits that they can be lost as well.

When one looks at Dr. Temple Grandin, one sees an extraordinary example of how autism may shape a person’s thinking in a positive manner, resulting in a real benefit to society. Indeed, Dr. Grandin has contributed to bodies of knowledge in multiple fields, and the mental processes leading to those contributions may, at least to some extent, be attributed to her autism. There’s no way to know if Dr. Grandin would have retained those gifts had she undergone comprehensive biomedical or behavioral interventions as a child. But we must consider the very real possibility that those gifts would have disappeared.

On the other hand, Ginger recently posted the story of an adult on the spectrum who is missing, and may be in harm’s way, due in no small part to his autism. No doubt that gentleman has positive gifts, but he is unable to communicate that to those around him.

The fact is not all autistic children grow up to be high functioning. But neither are all autistic children destined for a lifetime marked by significant impairment. The problem is nobody can tell us at an early age which of our children will grow up to be a Temple Grandin, a Kathleen Seidel, or a Michelle Dawson.

As parents we have to weigh the potential benefits of any intervention against the known risks. As part of that weighing, we must also consider the fact that we might take something positive away from our children, and we must decide if the good we hope to achieve outweighs the gifts we may be taking away from our children.

Ginger received a couple of very interesting comments in response to her initial question.

Jackie M. said:
Your question at the bottom struck home to me. This summer we heard the wonderful news that my son no longer could be considered Autistic. The one thing that I noticed was he no longer had that amazing ability to spell any word after hearing or seeing it once. For example, at 2-1/2, a friend’s father was over at our house while the boys were playing. I have a magnetic board with letters. My son picked up the letters and started to spell his son’s name, which was a very long name. The man’s jaw almost hit the floor. His son (same age) could only identify one letter in the alphabet and my son could spell about 20-30 words including his son’s 8-letter name. He no longer has that amazing ability. He can spell but not only after seeing a word or hearing the letters once.

Personally, I’ll trade the super human spelling for a child that can tell me what he wants, what is wrong, how he feels, and what he did that day.

And Angela wrote:
My experience has been that my son has become less savant-like with nutritional supplement therapy and Pivotal Response Training. This time last year, he was constantly adding numbers and into spelling big-time (he was 4 then). Today, he is very interested in play-dates and has become aware of friendships the other kids have. His personality has changed to become more social, more engaged, less inwardly focused. He is also more willful -- which I view as a good thing.

I try to avoid discussing specifics of my son’s ASD on this site, but I will say this. He is at an age at which we have a pretty good idea of his strengths and his deficits. And we have a very strong belief that there is far more to be gained by a successful intervention than there is to be lost.

One of the more aggravating criticisms often directed at us is that we desperately seek a cure not for our children’s autism but really for our own shattered dreams. Nonsense! As the father of two older, neurotypical kids, I can confidently state that I gave up on having my children live out my dreams a long time ago. I simply want all of my children to live out their own dreams. But I still must confess that I have one dream about my young son. In my dream, he has reached the rebellious stage of adolescence. He angrily confronts me, and he demands to know how he could possibly be the offspring of someone so thoughtless as to deprive him of an integral part of his personality. Why, my son asks rhetorically, did I ever think it necessary to “cure” him; did I consider him “defective?” Without waiting for a response, my son storms out of the house the house and walks outside to his waiting friends, to whom he complains about how I just don’t understand him the way his friends do. If my son would only look to the front window of the house, he would see me peeking out from behind the curtain, listening to him interacting with his friends. And he would see me grinning from ear to ear.

Sunday, October 23, 2005


There’s an inane stereotype some people hold about those of us who use biomedical interventions to combat our children’s autism. According to that stereotype, we are all desperate parents who can’t face the fact that our genetic makeup will prevent our children from living up to the aspirations we have for them, and so we are willing to risk their health and well-being by resorting to dangerous treatments. The only part of that description that might fit is the word “desperate.”

Yes, I’m desperate. I’m desperate to help my son achieve a measure of independence. I’m desperate to prevent my son growing up to be seen as a victim. I’m desperate to see my son grow up with no barriers to hold him back. In other words, I’m a normal parent.

For awhile, I was getting wary of even mentioning the word “cure,” mainly because it seems to mean something different things to different people. I tried to explain my concept of a cure for autism, and hopefully I can use the word again and it can be understood that I am not trying to alter the laws of nature. So, why do we feel it necessary to resort to what some think of as experimental medicine to cure our children?

Ginger, over at Adventures in Autism, has addressed the “why” question in a couple of recent posts. First, in "How Autism Threatens Children's Lives," she passed on a recent news item about a young autistic boy who was found walking down the street in a town to which his family just moved. My immediate reaction was to recall the most terrifying 10 minutes of my life. We were in DisneyWorld not quite two years ago, and my son managed to elope from the stroller without our noticing his absence. The story had a happy ending; between a wonderfully trained staff and a big assist from the most potent child-finding force in the world, the volunteer “mommy brigade,” we soon had our son back in our arms. But at the time, “soon” seemed like an eternity.

My son could not tell anyone who he was, who his parents were, or even that he was lost. A mother who heard us describing our boy to the security staff walked up a hundred yards or so, saw him standing off to the side, and found the nearest employee (oops, sorry Mickey, I mean “cast member”). Had that happened anywhere other than DisneyWorld, would we have had our happy ending?

Ginger’s post drew a comment from Kevin, a blogger from the “other side” with whom I have developed a mutual respect and something of a friendship despite strong differences in opinion. Kev didn’t see how a lost child is related to a parent’s desire to “cure” the child’s autism. Specifically, Kev, the parent of an autistic child questioned the right to make a decision to cure:
… if our daughter came home to us in her teens and said on balance she wanted to be “cured” then I would move heaven and earth to make that happen. What we all do, we do for our kids right? But who are we to make such a drasticaly altering choice as “curing” their autism when they can have no appreciation of the way it would alter the core of who they were as people?

Ginger’s response was nothing short of perfect:
Who are we? We are their parents.

Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold.

We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.

Ginger expanded on the subject with a post entitled "Does Autism Treatment Change Personality," in which she explained:
… I think we have different ideas of what “cure” means. To me it is that he [Ginger’s son, Chandler] would no longer fit the DSM IV criteria. Most specifically, and most importantly, he would be able to accurately size up his environment, act appropriately in his own best interests and advocate for himself.

You see, the point is not trying to keep our children from being lost in a theme park or on the streets of a new city. It’s to keep our children from being lost in the world!

In addressing the usual criticism of seeking a cure -- that we’re robbing our children of that which makes them unique -- Ginger again hit the nail on the head:
The changes we have seen in Chandler have not made him different so much as they have made him ‘more’. We are finding that he has talents we didn’t know he had because now he uses them and even shares them with us.

I certainly recommend reading the entire post.

My wife and I remain committed to using whatever means seem appropriate to help reverse the dysfunctional characteristics we see in our son. That doesn’t mean that we don’t have bad days. But we often have the kind of day that opens our eyes to see the progress our son has made.

The other day I was talking to a good friend of ours who now lives in Texas, having lost the family home in New Orleans to Katrina. It has been a few months since I last saw her son, and I couldn’t believe what I was hearing in the background of the conversation. A six-year old child who just a few short months ago was struggling to put words together, was now stringing multiple sentences together in real conversations. He now shows interest in other people, and most especially, the feelings of other people. What made the difference? His biomedical treatment progressed to the point where chelation was added to the mix, and metals are being removed from his tissues.

That young man and my son have a long way to go before we can say they have reached maximum improvement. But we see improvement that seems to be related to particular changes in protocols. Yes, it would be nice to wait for the science to be all in place so we could know exactly what will work and what won’t. Autism, however, is a complex problem, and learning the solutions will take a long time. It may be that we will never learn one solution, because the impact on each child is so different. Perhaps the exact combination of genetic and environmental factors that leads to autism in each child is different.

We do what we can. As part of a responsible decision-making process, we weigh the potential benefits of any treatment against the known risks. And it doesn’t take much risk to outweigh uncertain benefits. Our friend in Texas put it this way: “I would rather have my wonderful boy the way he was than to put him in harm’s way.”

That statement shows the biggest fallacy in the stereotyped view so many hold of us. They think we’re only concerned with the destruction of our own self-image and our own dreams. Those who think of us in that way can’t see into our hearts. If they could, they would see that our response was, is, and ever shall be about the kids. I believe that those parents who reject biomedical interventions have the same motivations, the same fears, and the same love for their children. Their decisions may be right for their children; I am in no position to judge anyone but me.

Yes, we all do what we can. None of us, regardless of how we view and respond to our children’s ASD, know any other way to raise our kids. We’re parents.

Sunday, October 16, 2005


DISCLAIMER: The following post includes commentary on legal matters, including suits filed several years ago in the State of California. Although the author is licensed to practice law in the State of Louisiana, this commentary is by no means exhaustive or definitive. First, the author is not terribly well-versed in California law, and second, the author has career and family responsibilities that simply won’t allow time for the type of research this subject probably merits. Under no circumstances, should the following be considered as legal advice.

I really do not want this blog to become a continuous rant against Paul Offit. So hopefully this will be the last post devoted to him for quite a while.

Over the course of the last few posts, I have looked at some of the opinions Dr. Offit puts forth; I have discussed why I think he is wrong; and, most intriguingly, I have speculated on the reasons why Dr. Offit would continue to engage in questionable thinking and actions even though he should know better (thanks for that turn of the phrase, Kristina).

Much of what people on my side of the fence write about Dr. Offit is devoted to the issue of his conflicts of interest: perhaps too much. I must admit that I find it hard to believe that Dr. Offit’s passion stems solely from self-interest. It may well be that Dr. Offit’s motivation has more to do with a desire to protect a vaccine program that he looks upon with a certain degree of pride.

The two cries we hear so often from vaccine apologists are: (1) that the claims of a link between vaccines and autism discourage parents from having their children vaccinated, and (2) that we are all just tools of greedy plaintiff lawyers who don’t care if they wrongfully destroy a vital component of our national health-care policy. The first argument obviously has no teeth. Just this past July, the CDC announced that vaccination rates were at an all-time high, with about 81 percent of the nation’s 19-to-35-month-old children receiving all the vaccinations in the recommended series. So the real issue is whether vaccine manufacturers should be worried about baseless litigation.

Paul Offit gave an interview recently to U.S. News and World Report, and it certainly provides some illumination as to how seriously he takes the litigation threat. The word “thimerosal” was never mentioned in the interview; the occasion was an opportunity for Dr. Offit to hawk his new book, The Cutter Incident. For those who are not familiar with the story, Cutter Laboratories was one of the manufacturers of the original Salk polio vaccine. The Salk vaccine relied on killed polio virus to create the immunity, but somehow Cutter mixed in live polio virus into some of the doses. As a result, thousands of children were infected with polio, including 10 who died.

Despite the acknowledged mistake of putting a live virus into some of the doses, Dr. Offit blames the incident on a reliance on animal studies. (Of course, we know the low esteem in which Dr. Offit holds animal studies.) Dr. Offit blames the Cutter incident for what he sees as the sorry state of affairs in the vaccine industry today.

Does that mean that vaccines now can be just as dangerous?

No. Because of Cutter, vaccines go through thousands of tests to make sure they contain exactly what they are supposed to contain. They are tested in thousands of people before they are licensed, and they’re watched carefully afterwards to make sure they don't cause any rare side effects.

So things are good with vaccines?

Also no. Cutter spawned a lawsuit that eventually brought the vaccine industry to its knees, which is where it is today.

By “to its knees,” Dr. Offit is specifically referring to the dramatic reduction in the number of vaccine manufacturers that produce a greater number of required vaccines. Of course, Dr. Offit doesn’t attribute any other factors that just might have contributed to that reduction, such as the increased cost of testing that rightfully must be part of the development of a vaccine, or even the merger of pharmaceutical companies. But could a single lawsuit bring an industry “to its knees?” Possibly, but it certainly wasn’t the suit Dr. Offit describes in his interview.

Shouldn’t people who were harmed by Cutter have sued? And won? They got polio, after all.

I'm not saying they shouldn’t sue. But the jury found that Cutter was liable even though they were not negligent. That meant vaccine makers could be sued for any harm. And juries who don’t understand science, and who don't understand the difference between causality and coincidence, award giant sums of money. That scares companies away from making vaccines. Group B strep infections -- the leading bacterial killer of newborns -- could be prevented with a vaccine for pregnant women. We have the technology to do it. But nobody is willing to risk lawsuits from women with babies born with unrelated birth defects.

Once again, we’re confronted with Dr. Offit’s attitude that lay people are simply too stupid to understand the intricacies of medicine and science. But was he right about the Cutter suit and its impact on the law? No.

The suit to which Dr. Offit apparently refers resulted in a reported decision that reviewed the jury’s verdict. Gottsdanker v. Cutter Laboratories, 6 Cal.Rptr. 320 (Cal. App. 1 Dist. 1960) actually involved only two of the infected patients, with a total jury award of $147,300 (including medical expenses). Now in fairness to Dr. Offit, there were undoubtedly many other suits that resulted from this incident, and this suit acted as somewhat as a precedent for those suits (at least for suits filed in California), but it hardly seems that $73,650 per child qualifies as a “giant sum of money,” even in the 1950’s economy. Some children probably were awarded more, but some probably got less.

Dr. Offit’s description of the suit is almost accurate, but only “almost.” It is true that the jury inexplicably determined that Cutter was not negligent. Perhaps the judge charged the jury that actual knowledge of a defect was required; I really don’t know. The point is the verdict against Cutter was not without a legal basis existing outside of the negligence theory. What the jury found, with eventually the court of appeal agreeing, was that Cutter breached an implied warranty of fitness. In other words, Cutter’s express disclosure that “local and other untoward reactions have been very minimal” was not sufficient to counteract the implied warranty that the vaccine would not cause the very disease it was supposed to prevent. The court of appeal addressed the same sorts of policy issues that Dr. Offit claims have been lost through the imposition of liability in cases like this:

Defendant strongly argues that public policy will best be served by denying recovery in warranty for “new” drugs. The argument is that development of medicines will be retarded if manufacturers are held to strict liability for their defects. While this argument might have merit if the warranty involved had to do with the mere failure of a medicine to cure or of a vaccine to prevent, it seems to be of but little weight where, as here, the warranty is limited to an assurance that the product will not actively cause the very disease it was designed to prevent.
6 Cal.Rptr. 326.

The real question becomes the extent to which Gottsdanker had an impact on the development of liability claims against vaccine manufacturers. The answer to that question is “not very much.”

When the Sabin oral polio vaccine was introduced, it used a live virus to create the desired immunity, and predictably, some doses contained viruses that were not properly attenuated, and patients wound up contracting polio as a result of receiving the vaccine. One reported California decision reviewing jury verdicts against a manufacturer (for the “giant sums” of $60,000 and $80,000) discussed the Gottsdanker holding. The court in Grinnell v. Charles Pfizer & Co., Inc., 79 Cal.Rptr. 369 (Cal. App. 1 Dist. 1969) noted that the appropriate theory for suits against vaccine makers was really the more traditional tort theory of strict liability rather than a theory of implied warranty. (In most jurisdictions, strict liability denotes a species of liability in which the plaintiff must show a defect, but because of the superior position of the defendant to be on notice of the defect, the plaintiff is not required to show that the defendant had actual or constructive knowledge of the defect. The recent trend in most states is to eliminate theories of strict liability, particularly in products liability claims.)

The continuing trend in California continued to be that courts became increasingly protective of vaccine manufacturers. In Sheffield v. Eli Lilly & Co., 192 Cal.Rotr. 870 (Cal. App. 1 Dist. 1983), the court refused to apply strict liability on an industry-wide basis for defects in certain doses of the Salk vaccine, nor did it allow the plaintiffs to rely on the doctrine of res ipsa loquitur. That doctrine (literally, “the thing speaks for itself”) would have shifted the burden of proof to the defendants to show themselves free from fault. The court’s ruling kept the burden of proof on the plaintiffs to prove all elements of liability.

Finally. the decision in Kearl v. Lederle Laboratories, 218 Cal.Rptr. 453 (Cal. App. 1 Dist. 1985), signaled the death of the type of decision that Dr. Offit claims to be such a threat to the vaccine program. Therein, the court of appeal reversed a finding of liability against a manufacturer of the oral polio vaccine, and limited the causes of action available to plaintiffs:

We hold that although in standard products liability litigation a plaintiff may utilize a strict liability design defect theory, such a strict liability cause of action must be prohibited for public policy reasons if the court determines, after taking evidence, that the product complained of is “unavoidably dangerous”; in such special cases, a plaintiff may proceed on a design defect theory only on the basis of negligence.
218 Cal.Rptr. 454.

That holding specifically addresses the concerns of Dr. Offit, as stated in his interview, that we “learn things the hard way in medicine, when things do go wrong.” In essence, the court held that vaccine manufacturers could not be held to a standard of perfection.

I have not conducted in-depth research into the current state of affairs in California products-liability law. And while I am not an expert in products-liability law on a nationwide basis, I do have a more-than-passing familiarity with the national scene, and my knowledge of Louisiana law on that subject is pretty good. If any state allows the completely baseless manufacturers’ liability that Dr. Offit claims is out there, I certainly am not aware of it. Even the Gottsdanker case, while on the liberal side, had a rational basis under the law.

All industries are subject to being sued, and sometimes those suits turn out to be factually unwarranted. The medical field, including pharmaceutical companies, are no exception. Even when defendants prevail, just being sued can be an expensive proposition. Unfortunately, that is part of the cost of doing business in this day and age. By and large, however, the courts and legislative bodies do a pretty good job of providing a favored status for medical providers and pharmaceutical companies. For example, claims cannot be brought directly against a vaccine manufacturer unless they first go through what has become known as the “vaccine court.”

The vaccine court is an arm of the United States Court of Claims. Instead of suing vaccine manufacturers directly, plaint5iffs file suit against the United States, and awards come from a fund built up from a tax on vaccines. Not one penny of vaccine profits go to funding the awards. After going through the vaccine court process, plaintiffs who are dissatisfied with the outcome may opt out and refile their claim in an ordinary court, but, of course, that can delay the ultimate resolution of their claims by years. The system is designed to handle vaccine claims without threatening the economic viability of vaccine manufacturers.

Also, courts are now required to adhere to what has become known as the Daubert test for determining whether expert opinions are allowed to go before a jury. Not only must the party demonstrate that the witness is qualified as an expert, but a valid basis for the opinion must be established. That is, it must be shown that the expert’s opinion was formed through the scientific method, or the jury never hears from the expert.

As I have mentioned before, I represent corporations and insurers. My practice includes the defense of products-liability claims. I am all for putting an end to lawsuit abuse. If Congress decides to provide more protection to an already protected industry, that option is always available. The American people would prefer that we see no more last-minute riders to unrelated bills, but we would all have to live with any further provisions that are subject to a national debate. In my humble opinion, though, the vaccine industry already has all the protection it needs.

The perceived threat of litigation is simply not sufficient to provide a rational basis for the paranoia that fuels the deception we get from vaccine apologists. What worries Paul Offit and those like him is not the threat of frivolous litigation. It is the growing reality that parents of autistic children just may have a legitimate claim.

Tuesday, October 11, 2005


In my last post, I offered a critique of Paul Offit’s interview on Autism One Radio. That post prompted the following comment from “JP,” who maintains a site called JP’s comment reads as follows:


Again, I believe you're off-base on a few comments.

As I've stated numerous times on my blog - if you're trying to ask the question of whether vaccines (or mercury in vaccines) played a role in moving the needle towards the 1 in 166 number we see today, epidemiology is the ONLY way to answer that question. So I think Offit's right in that regard.

I haven't heard Offit's interview, but I don't think that's necessarily inconsistent with saying that autism might have an environmental component, but that component isn't necessarily vaccination. I personally think that's a real possibility - there are MANY factors at work with the increase in autism throughout the years. Some of them are expansion of the ASD criteria and availability of services. Some of them may be external.

I disagree with your assessment of the Burbacher study. The Burbacher study illustrated that ethylmercury clears the body faster than methylmercury, but leaves more inorganic mercury behind. In the study itself, Burbacher doesn't necessarily say that the inorganic mercury left behind is dangerous or even meaningful, because nobody knows if it is or not. (other than one study that postulates that fact) So Offit's again, right on that point.

As to whether methylmercury exposure is more dangerous than ethylmercury exposure, well, there is the pesky fact that methylmercury is everywhere. We can't get away from it. It's in the food we eat, the water we drink and the air we breathe. If mercury is a cause of autism, it would be logical to assume that methylmercury is the prime culprit. You are correct in saying we have no studies to know that for sure, but it's a reasonable hypothesis.

And as I said above, Offit giving more weight to epidemiology IS appropriate. It's how you're going to make decisions about population-based issues. Reductionist studies aren't going to help shape public health policy. They can't, they're not powerful enough, they're not right often enough.

As to the Verstraeten study - while Verstraeten did classify the study as "neutral", I've now talked to three different folks involved with the study who disagree with that assessment. They all agree, however, that a more probative study (and there's one being conducted based on a similar Faroe Islands study several years ago) is necessary.

And as I said on my blog (and confirmed by two different individuals involved with the CDC) the data used in the Verstraeten study IS available for anyone who wants to use it. I've heard that fallacy of the "data is missing" so long now that it's become almost a given, which is a shame.

And as to your claim in a previous comment that Offit has deeply entrenched "vaccine industry ties" - I guess I'd like to see some actual proof of that. Offit himself has said, on numerous occassions, that he does NOT take money from drug companies. I've yet to see someone counter with hard evidence that he does, other than the claims of Merck hush money or misuse of "unrestricted educational grants" that is to date unfounded.

Wade, all in all, I think that Offit's position - while anathema to you - has a fair amount of validity. And as I told Ginger Taylor a while back - you have every ability in the world to prove me wrong. Epidemiological studies. Clinical trials of chelation therapy. Rather than rush headlong into curing kids with treatments that are of questionable validity and effiacy, why not do the due dilligence to know you're right first?

I started to compose a reply to JP in the comments section, but I soon realized there was enough to say for a whole new post.

First of all, JP’s comment that the astounding increase we saw in ASD over the course of 10 years results from changes in diagnostic criteria and availability of services is an argument that even the most tireless vaccine apologists are beginning to abandon. Note that in Dr. Offit’s interview, he acknowledged that autism “has apparently become more common.” I hate to parse oral statements, but Dr. Offit did not say that “reported cases of autism have increased.” Granted, the use of the word “apparently” leaves a little wiggle room, but Dr. Offit’s phrasing is consistent with what we hear from public health officials who, even though they do not wish to give credence to a vaccine connection, admit that there seems to be a rise in the incidence of ASD. Genetics cannot account for that rise. For a less scientific confirmation, simply ask any elementary school teachers who have been on the job for more than 15 years if they see more kids on the spectrum. (I should note that statements attributed to Dr. Offit have been all over the board on the issue of whether there is an epidemic.)

Epidemiology can get us to the one in 166 number, but it can not show the impact of the increased exposure to thimerosal (or the combined impact of thimerosal-containing and live-virus vaccines) after a large number of vaccines were added to the schedule. Only clinical and biological studies can show that, and Dr. Offit’s insistence that epidemiology can definitively provide and answer leads me to question either his intellectual honesty or his scientific competence.

With regard to the Verstraeten report, let me quote the author: “The bottom line is and has always been the same, an association between thimerosal and neurological outcomes could neither be confirmed nor refuted and therefore more study is required.” Dr. Verstraeten did not say that his study indicates a lack of an association, but it needs to be replicated. Rather, he said his study was inconclusive.

I believe that in making that statement, Dr. Verstraeten showed more intellectual honesty as a full-time employee of a vaccine manufacturer than Dr. Offit has ever displayed as a part-time consultant. Dr. Verstraeten knew that limiting the scope of his study to a strictly defined definition of autism as opposed to the full scope of ASD, together with including a cohort too young to be diagnosed with autism, dramatically altered the outcome of his report. It went from showing a probable association to being “neutral.”

While I have not spoken to anyone at the CDC as JP claims to have done, my understanding is that the raw datasets are gone. At least that’s what the CDC indicated when a member of Congress looked into the matter. What may be available are the final “archived” sets that do not include all data that was examined. Moreover, anyone who wishes to examine the data is given very limited access, reportedly on privacy grounds, even though all personal identifying information has already been removed. The only means of either replicating or refuting Dr. Verstraeten’s published “findings” is to have access to the original raw data with the same unhampered access as Dr. Verstraeten had.

The Danish and Swedish studies Dr. Offit finds so convincing as replication have no relevance at all to the Verstraeten report. First, the level of thimerosal exposure in those countries was far lower than the exposure to our children here in the United States. Moreover, the use of different populations in the “before” and “after” numbers provides a textbook example of data manipulation.

I can only assume that the “Faroe Island” studies to which JP refers are the same studies Dr. Verstraeten described as being “as comparable to our issue as apples and pears at the best.” He fought against using those studies as part of his report despite the fact that “many experts, looking at this thimerosal issue, do not seem bothered to compare apples to pears and insist if nothing is happening in these studies then nothing should be feared of thimerosal.” Of course, Dr. Verstraeten wrote that before he left the CDC for the greener pastures of Glaxo-SmithKline. One cannot help but wonder how Dr. Verstraeten’s report would have ended up had he not opened it up to the “suggestions” of others with vested interests.

JP correctly argues that a single reductionist study cannot control public policy. But that is the nature of reductionist studies; they each comprise a single part of a larger puzzle. When enough pieces of the puzzle come together, one can see the whole picture. Enough of those pieces are coming together now that we can see the plausibility of a link, but Dr. Offit -- and apparently JP as well -- will not put the pieces together.

For example, I cannot argue with JP’s statement that the Burbacher study, in itself, does not show the harmful impact of inorganic mercury in the brain. But it does show that inorganic mercury can accumulate in the brain, if ethylmercury is not excreted. And the Jill James study shows the plausibility of some children being genetically hampered in their ability to excrete ethylmercury. Moreover, I can’t help but be reminded that Dr. Offit’s primary criticism of Richard Deth’s in vitro studies of ethylmercury was that there was no evidence that ethylmercury crossed the blood-brain barrier. That answer was supplied by the Burbacher study. Dr. Deth’s study shows a probability that ethylmercury is every bit as dangerous as methylmercury. But again, one has to put the pieces of the puzzle together by looking at a number of reductionist studies, something Dr. Offit apparently does not have the patience to do.

JP’s argument about the pervasive risk from methylmercury is almost word-for-word the same argument we often hear from Dr. Offit. Certainly potential exposure from methylmercury is a risk factor, and can present a possible envoironmental trigger for all sorts of things, including ASD. But the bolus dose of ethylmercury my child received in any of his thimerosal-containing vaccines exceeded the exposure of methylmercury from other sources, especially considering the ethylmercury was injected directly into his body. Mercury poisoning just doesn’t get any more efficient than that.

JP may be willing to take Dr. Offit’s claim that he does not take money from vaccine manufacturers at face value, but I think he is hopelessly naïve to do so. Dr. Offit acknowledged that he has been a consultant for Merck, although he has refused to say what remuneration he receives for his services. Dr. Offit and his partner received a $350,000 grant from Merck for the development of their rotavirus vaccine, and then got to keep the patent. In essence, Merck paid to have the option to use the patent. Merck purchased 20,000 copies of Dr. Offit’s book, Vaccines: What You Should Know, to distribute to physicians. There is nothing dishonest about entering into these arrangements, but to pretend that the relationship doesn’t exist is wrong.

Of course, Dr. Offit’s grasp on the concept of a “conflict of interest” is a little shaky. He served on the Advisory Committee for Immunization Practices for the CDC. While on the committee, Dr. Offit voted three times in favor of adding a Wyeth vaccine for Rotavirus to the national vaccine schedule. Because his association was with another manufacturer, he saw no reason to cast a vote on the issue even though the first vaccine’s approval would make it easier to gain later approval for alternatives like Merck’s vaccine. It was not until the committee met again -- after the Wyeth vaccine killed 10 children in a two-week period -- that Dr. Offit thought that the appearance of impropriety might be enough to prevent him from voting on the vaccine’s removal from the schedule.

I practice in a profession that takes conflicts of interest pretty seriously. I should be thankful for people like Dr. Offit, because his actions make shady lawyers look relatively honest.

Let us suppose for the sake of argument that Dr. Offit did not have close ties to the industry, and that he speaks out simply because he believes so very much in a vaccine program that has saved countless lives. (Indeed, that is the reason JP gives for his own involvement in the debate.) The arrogant statements Dr. Offit has made, such as “full disclosure can be harmful,” from a New York Times Magazine article, show his attitude toward patients and parents. Look at the following quote from the interview he gave David Kirby for Evidence of Harm:

… you did more harm than good in sort of, quote/unquote, allowing the parent to be fully informed. There’s no politically correct way to say this, but being fully informed is not always the best thing.

I can picture Dr. Offit on the witness stand, shouting out: “You can’t handle the truth!!!”

Dr. Offit’s stated concern in making those statements was that parents were being deterred from having their children vaccinated. That concern may be laudable, but I would submit that Dr. Offit has done far greater damage to the vaccine program by making it easier to conceal the truth than would have been done if the problem would have been openly acknowledged. In his view, it may be better to hide some of the truth and sacrifice a minority of the children for the greater good. I have a hard time seeing that greater good, because I live with one of Dr. Offit’s sacrificial lambs.

JP says that we “have every ability in the world” to prove he is wrong. I am not sure what planet JP lives on, but here on Earth, research takes a lot of money. As long as men like Paul Offit provide cover for politicians and bureaucrats, some of whom benefit from the contributions of vaccine manufacturers, it will be difficult to convince government to allocate the necessary resources to definitively determine the causal connection between vaccines and autism. So the inquiry will take much longer than it should. Still, JP, tell Dr. Offit not to get too comfortable. It may take some time, but we’re going to find the answer.

Sunday, October 09, 2005


I have come to the conclusion that I have been wrong to repeatedly refer to Dr. Paul Offit as Darth Vader. Resorting to such juvenile name-calling is the style of some other bloggers (who shall remain nameless, since they don't use their real names anyway), not me. Although I offer my apologies to Dr. Offit for my little joke, his appearance on Autism One Radio gave me no reason to actually start respecting the man or his opinions.

Autism One Radio provided coverage on the Power of Parents Rally in Washington being held to give the physicians attending the American Academy of Pediatrics a little something to think about. In the midst of that, Paul Offitt was interviewed. I suppose I should give Dr. Offit credit for actually agreeing to be interviewed live on October 8th by Teri Small, but it would be a lot easier to do so if direct answers had been given to Ms. Small’s questions.

I can’t say I was very surprised at anything Dr. Offit had to say, other than his admission that autism “has apparently become more common” in the United States. I suppose that is as close as he can come to using the “e” word. Dr. Offit further vacknowledged that autism probably results from an environmental trigger acting on genetically predisposed children. And he also agreed that some children have genetic predispositions to vaccine reactions. Dr. O just can’t admit that those two concepts have any relation to each other. Why not? In Dr. Offit’s view, the epidemiological reports are irrefutable, no matter what clinical and biological studies indicate.

When Teri asked for a comment about the Burbacher studies, and its finding that ethylmercury crosses the blood-brain barrier, Dr. Offit chose to address the broader question of whether he thought thimerosal was delivered in harmful levels in vaccines. (Was he trying to stick to a script?) He tried to ignore the Brupbacher study, and instead focused on the four epidemiological studies that we have all discussed time and again.

Despite Dr. Burbacher’s findings that indicate the opposite, Dr. Offit continues to insist that methylmercury accumulates in greater and more dangerous quantities than does ethylmercury. With that opinion as a backdrop, Dr. Offit implied that the presence of methylmercury in the environment makes infant formula, or even breast milk, more dangerous than thimerosal in vaccines.

Throughout the interview, Dr. Offit continued to stick to his baseless opinion that methylmercury in the environment presents a greater danger than ethylmercury that was directly injected into our children.

Teri attempted to gently steer Dr. Offit back on track to discuss the implications of the Burbacher study, but he insisted that he had no idea why it should be significant for there to be inorganic mercury in the brain. He insisted that animal studies are not predictive in the least, and that the only proper measure of harm is to study humans. The superiority of human studies is difficult to argue with, but Dr. Offitt feels that the four epidemiological studies tell the whole study.

After Dr. Offit brought up the superiority of human studies, Teri commented that some human tissue studies seemed consistent with the animal experiments, and questioned whether further tissue studies would be useful. Dr. Offit made it clear that he prefers epidemiology to provide a complete answer rather than tissue studies he refers to as “reductionist.”

Let us be clear about reductionist studies. That term refers to the concept that complex problems can be better understood by reducing them to simpler component parts. Reducing complex problems is usually considered a pretty good approach in science; it prevents researchers from traveling down the wrong road. Yet Dr. Offit spit out the word as if it were a curse.

Dr. Offit believes that only epidemiological studies can answer the question of whether thimerosal can be related to the development of autism. When confronted with the statements by Dr. Verstraeten that the study he prepared neither proved nor disproved a connection, Dr. Offit said Dr. Verstraeten merely meant that the study was not probative until it was replicated, and that the other three studies successfully replicated the findings. Is he kidding???

The other three studies had nothing to do with Dr. Verstraeten’s report. They addressed different populations using different criteria. If one wanted to replicate the Vertsraten study, one would need to access the same data upon which the report relied. But as we all know, that replication cannot occur because the data is now “unavailable.”

Epidemiology has a place in the inquiry, but it cannot form the only basis for answering the question of whether component parts of a vaccine can trigger autistic symptoms in a susceptible child. Epidemiology can be too easily manipulated to produce the result the researcher (or the researcher’s principle) wants. For that reason, I have always likened epidemiology more to forensic accounting than to hard science. A well designed epidemiological study (and I certainly do not think any of the four studies at issue were well designed) can help define the questions, but it cannot provide final answers. Only if you are Paul Offitt can epidemiology be the only research one needs to perform.

This is the one question I would like to address to Dr. Offit. Why is it that vaccine manufacturers (and I hope we can all agree that Dr. Offit is an industry insider) have not conducted any clinical or biological research into the possible link between thimerosal-containing or live-virus vaccines and the onset of autism? There seems to be huge fear of legal liability. As an attorney who spends nearly all of his professional time defending corporations and insurance companies, including a lot of products-liability suits, I can tell you that a good scientific defense can save both indemnity and defense costs. It seems to me that the manufacturers would be eager to definitively refute any connection, using the same types of science relied on by those of us who believe in a connection. That would give them the best evidence of all. Their failure to fund that research speaks volumes.

Those studies will not be performed (or if they have already been quietly done, we will not hear of them) because the hypothesis of a connection is simply too plausible. So industry spokesmen like Dr. Offit will continue to talk down to us as if we don’t understand science. And that’s why I find Paul Offit so offensive. He assumes we’re stupid.

Thursday, October 06, 2005


Little by little life is getting back to normal where I live in St. Tammany Parish, Louisiana. We no longer hear the constant sound of helicopters overhead. Slowly, the debris crews are getting to various neighborhoods to pick up the remains of trees. The make-shift radio network that sprung up in New Orleans, with on-air talent from most of the stations in town sharing the mike is starting to break up, with some of the stations returning to their normal broadcasting.

My brother, John, came in from his temporary home in Nashville to check out his home in the Mid-City section of New Orleans for the first time since Katrina. He was unbelievably lucky. The flood waters stopped rising a mere inch from the floor boards of his raised house, thus saving the musical instruments by which he earns his living.

With the passage of time, the scale of the destruction of lives and property that Katrina caused seems to diminish. But whenever I start to forget that people are still suffering, I’ll see something that jolts me back into the reality of the hurricane’s aftermath. Yesterday I got that jolt from Operation Eden.

Clayton Cubitt is a frighteningly talented photographer who lives and works in New York. For the last week or so, though, he has been posting to a blog called Operation Eden, in which he chronicles his journey to Pearlington, Mississippi to help his mother and brother. There are pictures of gut-wrenching devastation, but what really got to me were the portraits -- in both pictures and words -- of the people of Pearlington and New Orleans.

Pearlington was a quiet little town that hardly exists anymore. After the storm, it was forgotten by FEMA, by the media, and by people like me who were too focused on the petty inconveniences Katrina caused. Clayton Cubiit made sure I will never again forget Pearlington.

Sunday, October 02, 2005


Foreword (a look back at this post with the perspective of time): One of the few regrets I have about doing this blog is the title of this post. It was childish and disrespectful -- not so much to Dr. Offit as to the tenor of the debate. You see, it makes a joke, and I've come to realize that there's nothing at all funny about Paul Offit or anything he has to say. For more, see That's His Story and He's Sticking To It, A Response to JP, The Cutter Incident and Paranoia, Here We Go Again, The Disingenuous Salesman, The Willingness to Confront Uncomfortable Questions, Why Is Anyone Taking This Guy Seriously, and A Friend Responds to the False (Pr)Offit.

Regular readers might know that I make one exception to my rule of “civility at all times.” That exception exists for Paul Offit, who never met a neurotoxin-containing vaccine he didn’t like. Well, he’s back!!!

Dr. Offitt recently published an op-ed piece in which he weighs in on the tragic death of Abubakar Nadama. Like too many other people, Offit just couldn’t wait for all the facts to come out. Instead, he decided to use this boy’s death -- before we even know what went wrong or what really happened -- to further his agenda of discrediting anyone who dares to question the wisdom of adding neurotoxins to vaccines, or who dares to question the wisdom of adding more and more and more vaccines to an already bloated schedule.

We get unintended irony this time from Dr. Offit, who now complains that the press is being too sensationalistic because they don’t give a balanced look at the issue. Many of us, though, remember the hatchet job by Dan Rather when 60 Minutes ran a story on the thimerosal controversy. On one side was a small group of “mercury moms,” who were made to seem like modern-day Luddites shunning anything smacking of science. On the other side was kindly Doc Offit, who oozed sympathy for the poor, misguided parents who just didn’t seem to understand that there was no science at all behind this crazy theory about an environmental trigger for autism. There was no mention of any of the scientists or physicians who believe there is evidence of a link between thimerosal and/or live-virus vaccines and the triggering of ASD. There never is (except for the relatively recent segment on Meet the Press).

Dr. Offit dismisses scientists and physicians who disagree with his position as a “few marginal scientists and clinicians.” Well, I’ll stick with those marginal scientists and clinicians who freely admit that their clinical and biological studies are still in the early stages, rather than with a doctor, no matter how many titles he may have, who refers to a small handful of extremely flawed epidemiological studies as having “answered the question of whether vaccines cause autism.” First, Dr. Offit misstates the hypothesis; the belief is that vaccines may play a role in triggering ASD in genetically susceptible children, not that vaccines, in and of themselves, “cause autism.” Second, regardless of the hypothesis, the epidemiologicial studies did not answer any questions. Certainly, safety studies for thimerosal prove nothing about long-term effects, primarily because there have been no such studies.

Of course, Dr. Offit will never tell the whole story, because he will not even tell the whole story about himself. The only information ever given about him is that he is the Chief of the Division of Infectious Diseases at The Children's Hospital of Philadelphia, and a professor of pediatrics at the University of Pennsylvania School of Medicine. Not once in any of Dr. Offit’s numerous media forays has it ever been mentioned that he holds a patent for a thimerosal-containing vaccine, or that he has numerous ties to the vaccine industry, including a consulting contract to “educate” physicians and the public about vaccines. In other words, when Dr. Offit appears on television or publishes a piece in the newspaper, he is paid to do so under the guise of “educating” us.

I’ve had about all the "education" I can stand from Paul Offit.


A couple of weeks ago, I wrote a post about respect, which was prompted in part by the dialog that occurred after I wrote about wanting to find common ground with the neurodiversity movement. Toward the end of the post, I wrote the following passage:

In the biomedical community, we often throw around the word “cure.” When I use that word, I know what I mean and most other people who practice biomedical know what I mean. We are seeking to alleviate the dysfunctional aspects of ASD in our children. We will never alter the genetic makeup of our children, and to the extent genes make them autistic, they will remain autistic. I can live with that. But I believe that one or more environmental insults has acted in concert with my son’s genetic makeup to create stumbling blocks that keep him from using all of this gifts. I cannot believe I am wrong in trying to reduce the effects of those environmental insults.

My hope in writing that was to explain that the concept of a cure should not be perceived as a threat to those who view autism in terms other than dysfunction. I apparently did not do a very good job, as some folks on both sides of the biomedical-neurodiversity line apparently misunderstood my intentions and beliefs. I apologize for length of the following tome, but I need to make sure I am understood.

Not long after I wrote the above, Kevin Leitch, a blogger with whom I seldom agree but almost always respect (and who I have come to like on a personal level) referred to my words to contrast something attributed to Lenny Schafer on the Evidence of Harm listserve. Kev wrote that he considers Lenny to be a “borderline bigot,” and he even suggested that I should lead my own listserve to take the place of Lenny and the EOH board. Well, in the words of the always quotable William Tecumseh Sherman, a yankee who knew his limitations: “If nominated, I will not run. If elected, I will not serve.”

There is no need to discard the EOH listserve, and no need to replace Lenny. Like any other internet group, it serves a purpose of forming a collective wisdom among those who share a common interest or ideal. That does not mean that everything that is posted therein qualifies as “wisdom.” I am quite sure the same holds true for any listserve, including the AutAdvo group to which many in the neurodiversity movement belong.

I think language is important, but I think tone is equally important because it sheds much light on a speaker’s intent. And often the best means of determining the tone in a conversation is to examine the context of the words the writer chooses. For example, Kev, on a few occasions, has excoriated Lujene Clark for a comment she wrote to him on one occasion. Now, I can’t really say that I know Lujene, but I’ve exchanged emails with her in the past, and I’ve read much of what she and her husband, Alan, have written. She has always struck me as a very reasonable person. So I looked at the context of the message Kev found so offensive, and found it to be at the end of a heated on-line exchange. The strange part was the bile seemed to start with Lujene making an innocent mistake about Kev’s name. Otherwise, her remarks struck me as pretty reasonable, although I’m certain Kev took offense at the suggestion that his daughter might benefit from a biomedical intervention. In any event, the tone of Kev’s response to Lujene was inflammatory, as was his response to another person who left a comment but unfortunately misspelled one word for which Kev openly ridiculed her.

Yes, I believe that words are important, but I believe the tone of a conversation is equally important. The second post I made on the blog criticized the self-appointed defenders of skeptical science for the attitude that it was perfectly acceptable to introduce harshness into a debate so long as the insult was relevant. I still believe civility matters, but I also understand that it gets difficult to keep turning the other cheek.

Yes, Lenny Schafer and I often use different tones in our writing, but I’ve never been vilified like Lenny has. Now I’m sure that Lenny would be able to give one version of how the feud started, and those who speak ill of him would give a completely different version. I’m not particularly interested in who started the war of words. What I am interested in is sharing my observations about Autism, and, in turn, learning about autism from others who have something to say.

When Kev quoted me in his blog, he left out much of the context. Here’s part of what I said before the part Kev found so interesting:

When you get right down to it, we have far more in common that we have real divisions. The divisions are largely the result of semantic differences. As we continue to discuss things in a rational and respectful manner, we develop a common lexicon and we learn.

Anything worth believing in should be able to stand up to scrutiny. I firmly believe in what my wife and I are doing for my son through biomedical interventions. The respectful conversations I have had with those who think otherwise have not shaken my belief. I will continue to encourage others to consider walking the same path we are walking. But I have learned enough from my new friends that I am starting to recognize the limitations of what we are doing.

The word “cure” may not have a place in the common lexicon of the conversation between the biomedical and neurodiversity communities. But that is only because most members of one of the two groups do not see the need to recognize that word as necessary. So I try to be careful about using the word in that context. My semantic caution when writing in a particular context, however, cannot change my belief that my wife and I are curing our son.

How either community chooses to describe autism is irrelevant. Medical science does not define autism by a particular genetic makeup, but rather by a constellation of dysfunctional characteristics found in autistic individuals. By definition, if one permanently rids the autistic individual of the dysfunctional characteristics, they cease to be autistic. Ergo, the individual is “cured.”

The biomedical interventions my wife and I use cannot change our son’s genetic makeup. So to the extent his autism results solely from genetics, he’ll still have that. And if he remains autistic, I can live with that and be content knowing I did all that I could. That being said, I don’t think genetics alone explains my son’s ASD, and I don’t think he’ll have the diagnosis after we complete the intervention.

I freely admit that I am not a scientist. But I learned enough about science and the scientific method, and I have read enough of the emerging science as well as the countervailing studies, to understand that we are still in the early stages of discovering why some children are on the spectrum. I have also spoken with people of science for whom I have a great respect. I think I have at least a rudimentary idea about the nature of my son’s condition with which my family lives on a daily basis.

I am not sure that all cases of ASD were triggered by environmental factors like exposure to thimerosal. But the increase in diagnosis over the last few decades cannot be adequately explained by differences in diagnostic criteria and increased awareness. Something has been happening to our children, and, at least in the case of my son, I think I know what.

I believe my son was born with a genetic predisposition that impaired his immune system and left him susceptible to certain environmental insults. I believe the first insult came within hours of his birth when he was given his first vaccination for Hepatitis B, a disease primarily communicated through activities my son will not even be capable of engaging in for several years to come. That vaccination contained thimerosal, a purported preservative and purifying agent with a makeup, by weight, which is nearly half mercury. I believe that dose of thimerosal, and the bolus doses that followed in subsequent vaccines, produced some degree of neurological impairment, manifesting itself primarily by a mild development in speech delay. I believe, also, that the thimerosal my son received did further damage to his already impaired immune system, leaving him more susceptible to damage from live-virus vaccines. I believe that my son regressed to a point where he was diagnosed as autistic as a direct result of having received the DPT, Polio, and MMR vaccinations -- that’s seven vaccinations in all -- in a single day! I am not against vaccinating our children, but the way we go about it is absolutely insane.

I believe that the biomedical interventions my wife and I use are curing my son of the characteristics that led medical professionals to label him as autistic. I do not believe that any gifts he has received through genetics will disappear, and I don’t believe his genetic predisposition to certain environmental insults (e.g., heavy metals) will magically vanish. But I do believe we will permanently rid him of the damage that was done by prior insults. If we fail to cure him, I can find hope in the courage and dignity I see in my friends from the neurodiversity community.

On the question of “curing” our children, I gladly and proudly stand with Alan and Lujene Clark, with Lyn Redwood, with J.B. Handley, and with Lenny Schafer. I may disagree with some of them on certain particulars about autism (e.g., the emphasis that has been placed on thimerosal as a causative factor to the exclusion of other factors). And I may disagree with them as to whether the cure we seek is appropriate for all who share the ASD diagnosis because I am not sure that all ASD is triggered by the same environmental factors. I consider those disagreements minor.

Certainly my style is a little different from that of some of those other folks, at least when it comes to public pronouncements. As a good Episcopalian, I have always been better at personal belief than I am at evangelism. But that does not diminish my belief in the least.

So what common ground can we possibly find with the neurodiversity community? I still believe the common struggle we have to defend the dignity of each individual on the spectrum is just as important as our search for a cure. (Here’s a great post by Kristina Chew on that subject.) All of us who are parents have had to cry when we see other kids avoid or mistreat our children. We’ve had to roll our eyes at the ignorance of adults who can’t seem to distinguish autism from mental retardation. And we’ve had to fight school officials who don’t seem to understand their obligation to help our children. The battle against ignorance and injustice is worth fighting, and so I will gladly and proudly stand beside Kathleen Seidel and Kevin Leitch in that battle.

The fact that battle is necessary explains why I cannot agree with my friends in the neurodiversity movement that I should concentrate on healing the world and forget healing my son. I obviously disagree with them on the question of whether healing is appropriate and possible (and I hope I have stated that disagreement with sufficient clarity). The fact is that the world will not soon change to embrace those with autism. The differences between autistic individuals and neurotypical members of society is not based on a mere ethnic difference. Unlike ethnic diversity that will strengthen a society, autism can (not will or shall, but can) cut the individual out of society to an extent that contributing to, and benefiting from, society becomes problematic.

If you read what I have written before, it should be obvious that I am well aware of the contributions many autistic people make on a daily basis. But how many autistic individuals reach a high-functioning level. It is simply not an answer to reassure us that all children progress at different levels, but that they all learn to communicate; that attempted answer only raises two questions that are impossible to answer. Can anyone tell me when that ability kicks in, and can anyone tell me that my son will reach a certain level?

The problem we face is that, like it or not (and you can mark me down for the “not” side), our society has reached a point that children are expected to begin achieving immediately. We know too many children at school that are exceptionally bright, and yet they are years behind in grade level, or they are unable to pass tests required to advance to the next grade. I am not trying to have my son live out my dreams; I just want him to be able to utilize his talents and gifts.

Much has been written in various blogs about a site called “Getting the Truth Out.” As I have stated before, I was very moved by this presentation. A young woman lets us into her world, and debunks several myths. I respect her intelligence; I admire her courage; and I will gladly fight for her right to dignity and self-determination. But if anyone asks me if I want my son to face the same struggles this young woman does, my answer is an unqualified “NO.”

We are two communities that need to talk and work together on the issue of human dignity, but that cannot happen if our differences on the question of a cure distract us. Unfortunately, a productive dialog is impossible if we in the biomedical community do not resist the urge to try and shove our cure down the unwilling throats of people who have made rational decisions to walk a different path. On the other hand, those who differ with us need to avoid telling us how deluded they think we are, or how we really don’t have our children’s best interest at heart. And for God’s sake, don’t tell us we just don’t get it. We understand autism all too well.

Human nature compels us to question the motives of those who disagree with us. Sometimes it takes a conscious effort to move past that. Trying to cure our children, and defending someone else’s right to reject that cure are not mutually exclusive. Let the civil dialog continue, but understand from the outset: we will cure our children.