Injecting Sense

I'D CANCEL MY SUBSCRIPTION, BUT I ALREADY DID THAT

2011-10-14T21:14:00.002-05:00

Almost 21 months ago, we addressed an open letter to the Chicago Tribune, making it clear just why we felt it necessary to cancel our subscription. Today, I'm more disgusted than ever at what I used to think was a great paper. So I thought I'd revisit the letter.

January 21, 2010

Mr. Tony Hunter
President, Publisher
Chicago Tribune Company
435 North Michigan Avenue
Chicago, IL 60611

Dear Mr. Hunter:

A few days ago, we called the circulation department to cancel our subscription to The Chicago Tribune. We thought it appropriate to write and explain why we thought this necessary. Put briefly, the Tribune’s continuing written assault on the autism community and those who serve us has caused us to lose the high degree of respect we once held for your newspaper. Specifically, articles written (or co-written) by Trine Tsouderos have, in our opinion, strayed from the principles of balance, fairness, and the truth.

By way of background explanation, our family is one of the hundreds of thousands in this country who have felt the impact of the autism epidemic. We are part of a growing number of people who have chosen not to meekly embrace our son’s disability, but rather to seek biological explanations for the clinical manifestations that led to the diagnosis and to utilize the best medical treatments to treat the underlying physical conditions. We are not alone on this journey, and like most of the parents who embark on this course, we are well-educated. Both of us have professional backgrounds (including a background in mainstream medicine).

Each case of autistic spectrum disorder is unique from a standpoint of both cause and treatment. We have utilized some so-called “alternative” therapies together with more traditional treatments. The continued improvement of our son’s clinical manifestations has been nothing short of remarkable. Our story is not unique; there are many of us who have seen first-hand the success that can result from treating underlying physical conditions instead of just the symptoms by which autism traditionally has been defined.

Many in our community have attempted to speak to Ms. Tsouderos about the healing we have seen in our children, but she has shown little interest in exploring our perspectives. Instead, she chooses to rely on the same talking points we have so often heard from groups and individuals with vested interests, while ignoring scientific studies providing a basis for the treatments.. On those occasions when she does quote someone – whether a parent, a practitioner or a scientist – that quote is invariably taken out of context and is either inaccurate or incomplete. For example, an article this past November, mined several quotes from Dr. Martha Herbert, a distinguished neurologist at Harvard. This was Dr. Herbert’s response to the Tribune, which your paper chose to ignore:

I did a rather long interview with the Tribune to explain my thoughts on chelation and additional approaches to solving the health issues connected to autism. The only consequence of my interview is that you use a solitary quote to make me sound contentious and defensive. Is there a reason you chose not to use something I said that would actually illuminate the discussion surrounding chelation and other medical treatments for medical compromises that may exist in these children?

To be sure, this is a complex and often controversial subject. The Tribune’s editorial stance on autism treatments, however, seems inconsistent with other positions it has taken. Recently, your paper printed an exposé on overuse of drugs at nursing homes, a worthwhile subject. Why is the only focus of your autism coverage upon so-called “alternative” treatments? Why is no attention paid to the frighteningly large number of physicians who want to treat autistic children under the age of five with dangerous stimulants and psychiatric pharmaceuticals? And why does the Tribune not show outrage at the fact that the American Academy of Pediatrics endorses that off-label usage of pharmaceuticals in their published treatment recommendations for autism?

The Tribune has run recent articles on rising numbers of allergies (including one noting the difficulties the Army is having in filling its ranks due to high incidences of allergies and asthma). Is your paper at all interested in exploring the interrelationship in the alarming rise of various auto-immune disorders: childhood cancer, asthma, allergies, ADHD and autism spectrum disorders (although not unanimous, more and more scientists are acknowledging that disorders in the immune system can cause clinical manifestations of autism)?

Our kids are the canaries in the coal mine. Something is going wrong with an entire generation, and it is rooted in environmental causes: adulteration of our food supply, chemical pollution, contamination of our water, overuse of antibiotics, and quite possibly a public vaccination schedule gone haywire. It’s not just scientific research that’s needed to put these puzzle pieces together; we also need the illumination of the questions in order to solving the questions a public priority. The role of the press is to present the issues in such a manner as to fairly raise the questions. In that, the Tribune has fallen well short of its duty.

The articles by Ms. Tsouderos were given front-page treatment, including the latest, which came at a time when every other organ of the press was focused squarely on the recent tragedy in Haiti. The lack of proportionality in that is summed up in one question. Why did the Tribune not show equal alarm with a major front-page article last month, when the Centers for Disease Control announced new autism statistics? According to the CDC, autism spectrum disorders effect one-in-110 children (one-in–70 boys), which is a dramatic increase from the one-in 150 the CDC announced just two years ago.

This country is facing a public-health crisis of catastrophic proportions, in which too many families are having to make difficult decisions. Instead of amplifying the seriousness of the situation, the Tribune has chosen to blindly criticize some of the scientists and clinicians who are searching for the answers.

We have no doubt that the loss of our subscription will have little economic impact on your company. Further, the publication of the articles in question will have little adverse impact on the Tribune’s reputation – at least not immediately. What the Tribune has lost, however, is far more precious. It has lost the integrity upon which the paper’s reputation was built through generations.

Yours truly,

Sym and Wade Rankin

cc: Samuel Zell
Chairman, Tribune Company

THE LONG WALK

2011-09-17T19:38:00.002-05:00

This has been the season of nail-biting for my wife and me.

After years of steady progress in elementary school, the Little Rankster went into Middle School this year. He’s now learning to deal with the constant changing of classrooms, dealing with the locker, changing for P.E., etc. It’s a lot of change to throw at any kid—especially one on the spectrum.

The biggest change has been that he now rides the school bus. It’s not the “special” bus; it’s the “regular” bus with all of the neurotypical kids. And that’s a bit scary for us as parents.

We’ve tried to use it as an opportunity for fostering more independence. We only walk with him for about a third of the two-block walk to the bus stop. But it’s so difficult sometimes to let go.

This was the conversation the other morning as we left the house:

Dad: You don’t mind if I walk all the way with you, do you?

LR: Actually, I’ll just kiss you good-bye here.

Dad: Okay. But then I’ll walk you all the way.

LR: Actually, Dad, you’ll just walk me half-way.

As I watched him walk, weighed down by his backpack and his trombone, I thought back over the journey thus far.

I remembered the conversation when the developmental pediatrician gave us the Little Rankster’s diagnosis. He had three pieces of advice. The first two items were to put him on Ritalin (a recommendation for off-label use, by the way), and to immediately put him in a “special” school where they would know how to “best deal with his problem.” The third piece of advice was to get on the waiting list for an institution, because the likelihood was that he would never speak or be able to function in a mainstream environment. I was in shock, but my wife was energized into action. And her reaction saved my son.

So here we are now, with a boy who attends school in a mainstream environment without an aide. He plays—and even excels—in the school band. In Elementary School, he sang in the chorus, and served on the student council. To be sure, there are still struggles and issues, and we’re not finished yet. But the progress borders on the miraculous.

It didn’t just happen. There’s been a lot of work. There has been lots of biomedical intervention and assorted “voodoo.” There have been weekly visits to speech therapists, and summer programs to work on one thing or the other. There was a move from our beloved home to another state to have better access to services, and to be closer to a remarkable physician who has had an immeasurable impact on our family.

Through it all, there has been one person who’s worked at it harder than my wife and me. And as I watched that person walk to his bus stop, I came to a realization. Sometimes a one-block walk can be a hell of a long journey.

PROGRAM NOTE FOR AUGUST

2011-08-27T13:09:00.001-05:00

I took a month off from my Autism One Radio duties in July (resulting in a rerun of one of the more memorable prior episodes). This month, though, we’re back in a big way.

Tomorrow (August 28, 2011) at 1:00 pm Eastern/Noon Central, we’ll have a very special Injecting Sense: The Radio Edition. I have two guests for you, both of whom are shining examples of taking positive action.

First, I’ll be talking to Marcella Piper-Terry about the new-but-growing-at-a-rapid-pace billboard campaign to educate parents about their right to decline vaccinations for their children.

Then, we’ll take some time to talk to Harry Tembenis about how he and his wife were inspired to take positive action by their son, Elias. I guarantee you will be inspired.

Join us on-line at Autism One Radio. Or, as always, you can catch it later in the archive.

AMERICAN DECLINE AND THE NEW NORMAL: A VISIT TO SCOOTER CITY

2011-07-16T13:58:00.002-05:00

I see fat people. Riding scooters among regular people. They only see what they want to see. They don’t know they’re fat

How often do you see them?

All the time. They’re everywhere.

⎯ with apologies to M. Night Shyamalan

A couple of weeks ago, we made one of our pilgrimages to bow before the mouse with the white gloves.

The Rankin family is Disneyfied. Every few years (or more often if we’re able), we have to pack the car and head to Lake Buena Vista, Florida, home of the happiest place on Earth. We not only have a great time (all the wishes you can afford), but we get to look through a window onto America.

On this latest trip, I made two observations about the state of our people, and those observations are not terribly positive. One is about how people treat each other; the other is about how they have been treated.

First, the decline in courtesy and civility in our society continues to amaze me. You have to understand; I’m old school. I was raised to believe that the fabric of our people is held together by the display of good manners.

When I see adult men keeping their seat on monorails and busses when there are women and children standing, I am disgusted. I saw a few men do the right thing, but often it was out of a sense of shame after seeing someone like me do it. I was encouraged by one teenager who spontaneously get up and offer his seat to my wife and son. More often than not, though, I saw men in their twenties and thirties keep their seats and look down to pretend they didn’t see anyone else.

Another indication of the decline of cavity is one of my pet peeves: men wearing hats (usually baseball caps) in restaurants. Yes, I realize we were in a resort area, and that the old rules are relaxed. I can handle guys wearing shorts and decent t-shirts to nice restaurants. I can handle wearing caps inside the lobby of a hotel, inside souvenir shops, or even in elevators. But I always like to think of restaurants and dining rooms as the last refuge of civility.

This is not something restricted to Disney World. I see this absurd and disrespectful wearing of headgear in nice restaurants outside of resort areas. These aren’t guys wearing hats outside and not wanting to show their hat hair; most of the guys I saw doing it were bald or had buzz cuts. And it’s not just kids. I see middle-aged men doing it. Shame on their parents for not raising them right!

Okay, let me get off of that soapbox. My second observation is far more serious.

A day or two into our visit, my wife turned to me and asked, “have you noticed how many more scooters we’re seeing than we used to?” Some were the people we’ve always seen: the elderly, those with heart problems, those with extreme arthritis (a bad enough sign of the times). Mostly, though, we saw people who needed their scooters because they were just too heavy to ambulate on their own.

Don’t get me wrong. I’m carrying too many pounds on my frame (a situation I’m addressing). I’m not talking here about people who are “husky,” “heavy-set,” “big-boned,” “chubby,” or even just “fat. The people we saw on their scooters fit the category of morbidly obese. And they were everywhere.

They tooled around here and there, but even in one of the most ADA-compliant locations on the planet there were things they just couldn’t do. It was just too hard for them to maneuver through the crowds—not that it didn’t stop them from trying as the screams and howls of folks with run-over feet attested.

The level of obesity we see these days is not just a problem of too many people lacking discipline at the dinner table or spending too much time at the television. And even though we saw entire families that were way overweight, this isn’t a simple matter of genetics (there may be some genetic predisposition at work, but it’s too simple an answer). This is not a matter of personal behavior as much as it is a matter of environment.

The obesity epidemic is just one more part of the “new normal.” We’re a society packed with autoimmune disorders, developmental disabilities, and so many chronic health problems—like obesity. Is it all related?

The causes for all of these things are complex. Even the autism epidemic can’t be limited to just over-vaccination and vaccine toxicity.

The root of the obesity epidemic are the most basic parts of the underlying causal factors of the “new normal: as a whole. It all comes down to what we are putting into our bodies.

We live in a country in which the advertising empires have convinced us we must eat “low-fat” foods, and use artificial ingredients to avoid all of that bad natural stuff that will make us fat. So how come we’re going in the other direction?

Could it be that we shouldn’t be so focused on how much fat as we should the kind of fats?

Could it be that we shouldn’t be so focused on saving calories that we wind up putting pesticides in our bodies instead of real, raw sugar, honey, or natural alternatives?

Do we need to focus so much on food production that we feed things to cattle that God didn’t design their systems for, genetically design seeds to put the pest control inside of the food instead of outside (both bad alternatives), or poison the waters from which we get so much of our sustainable food supply?

Our family made a commitment some years ago to clean up our diet. We eat grass-fed beef, wild caught seafood species that are known to not retain mercury, pastured pork and free-range chicken, and organic produce. It’s made a difference in our lives. We feel better. We’re healthier. And on those occasions when overconsumption and inactivity bring on the extra pounds, we’re able to make relatively easy corrections that don’t involve riding on electronic devices.

A good place to start is the Weston A. Price Foundation.

PROGRAM NOTE FOR JUNE

2011-06-21T21:21:00.002-05:00

It’s that time again: time for my monthly assault on the web-waves. June’s installment of Injecting Sense: The Radio Edition will come your way on June 28th, at 1:00 pm EDT.

My guest will be Cynthia Cournoyer, author of What About Immunizations?: Exposing the Vaccine Philosophy. It’s a great read, discussing how vaccine interests have misframed the debate.

You can hear it here on the 28th. Or catch it later at your convenience when it hits the archive.

TAKING FLIGHT FROM THE COAL MINE

2011-06-04T14:02:00.001-05:00

This year’s Autism One/Generation Rescue Conference was filled with the usual opportunities for education and fellowship, and the annual attempt by a certain someone to show up for the sole purpose of being asked to leave (he wasn’t disappointed). And as often happens, the conference provided the stage for a special announcement.

On Friday, May 27th, the Age of Autism trio (Mark Blaxill, Dan Olmsted, and Kim Stagliano), along with my pal, Ginger Taylor, invited all to join with them in the Canary Party. Judging by the reaction within the packed room, it is an idea whose time has come.

Although it will have some of the trappings, this is not a party in the traditional sense of the world. It is, rather, a political movement. It’s a movement to use political means to bring honesty to the scientific endeavors of our nation’s public health sector. It’s a movement to use political means to bring fairness to the legal system. It’s a movement to steer our nation’s political leaders toward asking tough questions. It’s a movement that embraces all sides of the political spectrum: left, right, liberal conservative, and all other descriptions that have lost all of their traditional meanings in the mess of partisan politics.

Some, who are nonetheless enthusiastic about the mission, expressed some concern over the name of the party. The name, of course, comes from the old use of canaries in coal mines to warn miners of dangerous toxins. What I heard from some was “aren’t the canaries the ones who die?” Yes they are. And they do. Too many of our kids’ lives are cut short.

The fact is that the children of the autism epidemic are the canaries in the coal mine. They are the outward and visible sign of a much broader public health crisis; this is not just about autism spectrum disorders. Anyone who has worked in health care for 20 years or more—at least any that are willing to honestly answer—will tell you that the growth of all autoimmune problems in younger populations is alarming.

And the causes for this public health crisis include, but are by no means limited to a vaccine program that has run amok. Those causes include pollutants in the air, water, and soil. They include the adulteration of our food supply. They include the indiscriminate use of pharmaceutical products. And all of those toxic insults have occurred with the cooperation of various federal regulatory agencies that were charged with protecting the public.

Political pressure must be brought to bear on a regulatory system that has become nothing more than a career path for bureaucrats who want subsequent jobs in the various industries we pay them to protect us from.

Reaction from the “other side” has been predictable. One self-styled “skeptic,” a medical blogger with no child to worry about, dismissed us by commenting that the color adopted by the party reminds him more of a certain bodily fluid than it does canaries. Wow, that was profound. To him, and to those of like mind who would rather treat us with scorn and derision rather than debate us with intelligence, we have a message: bring it on.

This is the right movement the right time. Concern for the future health of our population is steadily increasing, and our numbers will increase with that concern. The only ones that can stop us are ourselves. We have a history in our community of letting internal politics tear us apart. That cannot happen with this endeavor. That’s why it was so important that this announcement came at a conference with a history of bringing together a wide range of groups who can coexist.

If we’re going to make this thing work, we need to check our egos at the door. We have to worry less about who is speaking and acting within our ranks, and worry more about who is doing what to the most vulnerable people. We must keep our eyes on the prize. There can be only one agenda: our children.

Our children have been endangered canaries for too long. It’s time to clean up the mines, and let them fly. Join us.

The only thing I did was wrong
Stayin' in the wilderness too long
Keep your eyes on the prize, hold on

The only thing we did was right
Was the day we started to fight
Keep your eyes on the prize, hold on

Hold on, hold on
Keep your eyes on the prize, hold on

FOR ALL THE SAINTLY MOMS

2011-05-08T08:04:00.001-05:00

I wouldn't be able to say "happy Mother's Day" any better than I did a couple of years ago when I posted this.

AN EASTER LESSON

2011-04-24T12:54:00.001-05:00

Today is Easter Sunday. This morning, I started thinking back to years past when my mother, Betty “Big Mama” Rankin, hosted the Moldy Fig Jam every Saturday morning on WWOZ radio. She showcased the best of traditional New Orleans jazz, and did so with love.

On the day before Easter, she always threw in a heaping helping of hymns played in the New Orleans style, and she saved a little time to play some Mahalia Jackson. For Big Mama, it made sense to pay tribute to the Lord by sharing one of the most glorious voices He ever created—a native voice that bridged the gap between the sacred and the secular souls. Playing Mahalia also educated the listeners as to the roots of the jazz they so loved.

So every year Big Mama played some Mahalia, and every year, like clockwork, some ignorant jerk would call the station and complain. Typically, the faceless voice on the phone would declare that if he wanted to hear that $&@ gospel !*%#, he would tune in the next day to hear the gospel show; he wanted to hear real jazz.

Big Mama was not the kind of person who could easily shrug off the meaness of others. She always left the studio in tears. But within hours her tears of sadness would turn to … well, not exactly anger; I’d call it determination. She’d immediately start planning out her Easter show for the next year. And there would be one more Mahalia Jackson song than she played that year.

I learned a lot from my mother.

Happy Easter.

IS THE MEDIA FINALLY CATCHING ON TO THIS GUY?

2011-04-19T21:49:00.002-05:00

For years, I’ve had a love-hate thing for Dr. Paul Offit. As a blogger, I loved the fact that he always seemed to come to my rescue when I couldn’t find anything to write about. As if on-cue, Dr. O would say something outrageous and a blog post would practically write itself.

On the other hand, as a parent, I grew so weary of what I perceived to be his arrogance and cavalier attitude toward the victims of the autism epidemic. Beyond all else, though, I have constantly wondered why the mainstream media kept buying the bill of goods this disingenuous salesman was pushing.

Now it seems that someone is catching on.

Back in August, 2008, the Orange County Register allowed itself to be used as a conduit for Offit’s rage directed at Sharyl Attkisson of CBS News, one of the few journalists who was willing to look beneath the surface of the vaccine safety issue. This week, though, the Register (at least in its on-line version) ran a “correction,” having found that “it appears that a number of Dr. Offit’s statements … were unsubstantiated and/or false.”

Specifically, the Register stated:

Unsubstantiated statements include: Offit’s claim that Attkisson “lied”; and Offit’s claim that CBS News sent a “mean spirited and vituperative” email “over the signature of Sharyl Attkisson” stating “You’re clearly hiding something.” In fact, the OC Register has no evidence to support those claims. Further, Offit told the OC Register that he provided CBS News “the details of his relationship, and Children’s Hospital of Philadelphia’s relationship, with pharmaceutical company Merck.” However, documents provided by CBS News indicate Offit did not disclose his financial relationships with Merck, including a $1.5 million Hilleman chair he sits in that is co-sponsored by Merck. According to the CBS News’ documentation recently reviewed by the OC Register, the network requested (but Offit did not disclose) the entire profile of his professional financial relationships with pharmaceutical companies including: The amount of compensation he’d received from which companies in speaking fees; and pharmaceutical consulting relationships and fees. The CBS News documentation indicates Offit also did not disclose his share of past and future royalties for the Merck vaccine he co-invented.

Better late than never. It will be interesting to see if anyone else in the mainstream media takes note.

For Ginger’s take, and a peek at the CBS story that led to all this, go here.

HERE’S SOME “AWARENESS” FOR YOU. IT’S GONNA COST SOMETHING.

2011-04-03T14:34:00.002-05:00

So here we are again: that time of year when everyone talks about “autism awareness.” It too often means making useless gestures, like putting in a blue light bulb. Sometimes though, it takes the form of a good, two-way discussion with a good friend. I had such a discussion, albeit via electronic means, with an old and very valued friend. Let’s call him “Bob” (mainly because his name is Bob).

It all started with one of those Hitler videos. You know the ones I’m talking about. They show up from time to time on You Tube. They all use the same footage from a movie, taking place in World War II, called The Downfall. Hitler is meeting with his military staff, and the staff breaks some bad news to the Fürher. That scene took on a whole new life when people with nothing better to do in their life started adding their own subtitles, placing the scene in different contexts (e.g., Hitler finds out Michael Jackson died and won’t be at his birthday party; Hitler gets banned from Wikipedia; etc.).

A recent version (go here because embedding is disabled) places Hitler in the role of a school district’s special-ed coordinator, meeting with his staff to plan their role in an upcoming I.E.P. meeting. He starts discussing the program they will foist upon the unsuspecting family, and the staff breaks the news that the parents are demanding an outside placement to meet the child’s needs. Worse yet, some of the staff members appear to agree that the outside placement is necessary.

It all sounds so familiar to far-too-many of us. Our children need particular help to truly receive a “free and appropriate public education,” as guaranteed by the Individuals with Disabilities Education Act (IDEA). But programs like that cost money, and so some districts instead try to throw kids into a one-size-fits-all program to partially address the needs of a lot of kids who sort of have the same needs. It seems like all they’re really trying to do is shut up parents for a while until it’s too late to do anything.

I did what so many of us do when we see stuff like that; I posted it to my Facebook wall. And that led to a conversation with Bob, who is the kind of guy who knows that good friendships not only survive spirited debates, but thrive on them.

Bob is a computer networking professional, who works with the special-ed folks in an area that takes its IDEA responsibilities very seriously. They apparently do some very innovative things to actually serve kids with special needs.

From his perspective, Bob thought the video painted with too broad a brush. Like me, he was viewing the satire through the lens of personal experience. Based on conversations with parents from across the country, though, I have to say that my experience may be closer to the norm.

That is not the fault of the professionals who work with our kids on a daily basis. Most of them want to see more done. Rather, the blame is shared between the federal government, the school districts who are responsible for carrying out IDEA, and most of all, the well-intentioned but poorly defined mandates that IDEA sets forth.

I can certainly understand that viewing the Hitler/I.E.P. video, if taken on its face, can lead one to the conclusion that an invidious comparison is being drawn between special-ed coordinators and the personification of evil. On that level, it can be called unfair. I have yet to meet any district representative who doesn’t seem like a nice person. This video, though, resonates with me as an expression of frustration with a system that tends to drive a wedge between people that might otherwise form a useful partnership.

IDEA is a product of the early stages of the explosion of developmental disabilities. Its noble purpose was to guarantee that kids with autism, ADHD, and other problems, could have the same opportunity to receive an appropriate education as any fully-abled child. After it became the law, though, the explosion hit.

The resulting situation is very similar to that described by the special services fürher in the video. The federal government mandated services, without properly funding them. And the response is all-too-often taking the easiest path of throwing together in-district programs that are based on proven strategies but don’t carry though the intensity needed to be truly effective.

That approach ignores the first word in IDEA: individuals. It pays lip service to the concept of “no child left behind,” but in fact, tries to sweep children along until they’re past the age of IDEA’s reach. Those kids never reach their potential; they never have a chance.

Almost as bad, that forces more and more parents, fighting for their individual children, to institute “due process” proceedings, which sometimes lead to court suits. Very rarely do the children get appropriate services during that process, and the districts waste precious monetary resources in the litigation (and make no mistake about it, “due process” means litigation).

To be sure, the opportunities and problems vary from district-to-district. One of the reasons we moved from Louisiana back in late 2006 was to find some place with a better school system. And we found that. But “better” doesn’t necessarily mean “good” or even “adequate.” Had all else been equal, we would have wound up in a place where, like Bob’s locale, the approach to special education is proactive and innovative. Other factors, including career opportunities and, more importantly, access to other medical and therapeutic services, dictated our move to where we are.

My point—and as usual, I’ve taken my own sweet time to get there—is that this country needs to wake up. We are in the midst of a true epidemic. As our kids reach adulthood, without the necessary tools to live independently, more and more financial resources will be needed to support them (which doesn’t even begin to address the tragedy of the impact on them as human beings). We, as a country, need to make a serious investment in appropriate educational services. And if that means spending more to outsource services, so be it.

Just as important, this country needs to take a real interest in the hard questions of just how we got here in the first place.

Stopping this epidemic and dealing with its victims is going to take more than screwing in a blue light bulb and talking about the fact that there’s a lot of autistic kids out there. We need more than a Khumbaya moment.

Autism awareness must lead to action.

Program Note for March

2011-03-27T12:46:00.002-05:00

On this month's edition of Injecting Sense: The Radio Edition, my guest will be that dedicated dad, the man behind the camera for F.A.I.R., and an all-around great guy, the one-and-only Erik Nanstiel. Tune your computers to Autism One Radio on Monday, March 28th, at 1 pm EDT, noon CDT. Or catch it later in the archive.

DON’T PRETEND TO SPEAK FOR ME

2011-03-26T13:32:00.002-05:00

As long as Autism Speaks squanders a small fortune on excessive salaries; as long as it fails to provide any meaningful support services to families in need; as long as it continues to waste its precious research dollars on dead-end projects — I will not “light it up blue.”

THE NO-CHOICE CHOICE

2011-02-26T20:43:00.002-06:00

The United States Supreme Court has now made it official in its ruling in Bruesewitz v. Wyeth LLC. Anybody looking for justice need not look at the courthouse. The Court has shut the door. There was no finding as to whether Hannah Bruesewitz was actually injured by the DPT vaccine. Rather, the majority opinion merely thought that the “compensation” available through the National Vaccine Injury Compensation Program is so “generous” that the vaccine industry should enjoy a complete pass on accountability for the safety (or lack thereof) of its products.

Never mind that the proceedings in the NVICP lack the basic trappings of due process (right to discovery, fact finding by a jury of one’s peers, etc.). Never mind that the manner in which the government—our government—fights each and every claim eliminates the possibility of speedy compensation promised by the laws that created the program. And never mind the fact that taking the manufacturers out of the equation altogether provides no incentive to create safe products that are tested for safe interaction with other vaccines.

All in all, it’s all just another brick in the wall. The NVICP and the corresponding immunity granted to vaccine manufacturers serves the mandatory nature of the vaccine schedule, which feeds the profits of the manufacturers. And all the while that the public-health/pharmaceutical complex enjoys freedom from oversight based on vaccines being “unavoidably unsafe,” they keep feeding us the party line that vaccines and the vaccine schedule are “safe and effective” for every child.

If the truth will ever be revealed, and if justice ever comes for all victims of the arrogance of the public-health/pharmaceutical complex, we must first win the political battle. An uproar must arise that is so loud that it drowns out the talking points being fed our legislators by high-paid lobbyists.

These are perilous times for the basic human right of determining what goes into our bodies and our children’s bodies. That makes it the right time for Vaccine Epidemic: How Corporate Greed, Biased Science, and Coercive Government Threaten Our Human Rights, Our Health, and Our Children , edited by Louise Kuo Habakus, MA and Mary Holland, JD. It’s a project of the Center for Personal Rights, which grew out of last summer’s America Rally for Personal Rights.

The format of the book lends itself to either reading from beginning to end, or simply browsing what looks most interesting at the moment. It is a series of essays by different authors that look at every aspect of the debate. The emerging science is discussed, of course, but primarily in the context of the suppression of valuable research. Are there gut-wrenching tales of vaccine injuries? Yes, and those stories lay the context for the real issue.

The real issue is whether we, as a country, are willing to support the most basic right of self-determination: the right to decide what goes into our bodies and our children’s bodies. It’s all summed up in the book by James Turner, JD, in his chapter entitled “Due Process and the American Constitution:”

In a moral society, there can be no mandated vaccinations. In a moral society, citizens must be allowed to choose which vaccines they and their children receive and when. Without vaccination choice, society places both public and individual health at risk. Vaccination choice is a fundamental human right.

The choice we now have is illusory. It is, in fact, no choice at all. Children cannot go to school without being vaccinated per schedule. Our military cannot serve without having multiple vaccinations shot into their bodies (can anyone say “Gulf War Syndrome?”). Health-care workers are subject to enormous pressure to get mercury-containing flu shots. And most of the states who allow religious and philosophical exemptions will only recognize those exemptions as an all-or-nothing deal. Parents cannot make informed decisions on each individual inoculation.

Exemptions have truly been labeled the “no-choice choice.”

Yes, it’s time to make your voices heard. And this is a book that can help you find that voice. As a matter of fact, I suggest that you buy four copies of Vaccine Epidemic. Keep one yourself, read it, and pass it on. Send one copy to your elected Representative in Congress. And the other two go to the United States Senators from your state. And on those copies you’re sending to Congress, inscribe them yourselves. Personalize them to the recipients, and give them your story in a few sentences.

Maybe, too, you should point the political leaders to another quote from James Turner’s essay. Throughout his chapter, Mr. Turner recounts investigatory work he did on vaccine safety through the years. Back in the seventies, one of the people he turned to for education on the subject was Dr. J. Anthony Morris, who at the time was a senior vaccine regulatory researcher and a control officer for influenza vaccines at the NIH. He recently asked Dr. Morris, now 92-years-old, what message he would give the American people. The reply: “Tell them I do not take the flu shot.”

Sorta says it all.

Tune in to Injecting Sense: The Radio Edition, on Autism One Radio, on Monday, February 28, 2011, at 1 pm EST. My guest will be Mary Holland, JD, and we’ll be chatting about this book. After the show runs, it can also be heard in the archive.

A TEACHER'S PERSPECTIVE

2011-02-13T10:46:00.002-06:00

Age of Autism posted a letter from a teacher who has a lot to say. Unfortunately, her work environment has degenerated to the point where she needs to say it anonymously.

I am a teacher and like other teachers, I am afraid of speaking up on the increasing numbers of ill, disabled and IEP students as I fear that my job will be on the line. I know others have spoken up who then had the hand of the dark Blogosphere then dial their Principals, Superintendents or Board of Education to make a complaint. It was not a complaint from a parent of a child at the school, a teacher there, or even a known person in the school district. It was a John Doe who scared that Administrator with words like "confidentiality," or "lawsuit."

Her fear is real.

Both doctor and teacher have information to share of what they are witnessing with their own eyes. Real evidence of a change, a pattern, a devastating increase in human suffering that they want to explore and discuss. But that message is ugly, toxic and so damning in its connection to public health that the messengers are being attacked.

What this teacher has seen speaks volumes about what others choose to ignore.

I am here to anonymously say that the number of teens with diagnoses of Autism, Seizure Disorders/Epilepsy, Specific Learning Disability, Non-Verbal Learning Disability, Speech and Language Disorder, Other Health Impaired (ADHD/ADD, Bipolar, Social-Emotional Disorder), Crohn's, Irritable Bowel Disorder, Allergies (with significant Food especially Peanut), Asthma, and Diabetes are horrific. Connections, like seeing Specific Learning Disability AND Asthma as paired diagnoses in many children, makes one wonder if anyone is doing research on that curious and sad occurrence. I am also here to tell you that the increase is NOT because of improved diagnoses of the children or a loosening of criteria. If anything, the elementary schools are really trying to raise the bar on entering special ed.

Through the years, we have encountered so many teachers who see the truth, and support us as best they can, but find themselves frustrated by the system. We also see others who are more-than-willing to turn a blind eye to the obvious.

Read the whole letter here.

THE LEVEL OF THE DEBATE JUST GOT RAISED A LITTLE BIT (A VERY LITTLE BIT)

2011-01-29T20:10:00.000-06:00

WITF, a public television station in Harrisburg, Pennsylvania recently hosted a lively discussion on its show, Smart Talk. The subject was the potential vaccine-autism connection, and the format essentially pitted Mark Blaxill against two representatives of the mainstream medical community. It was not a fair fight; there were only two on the other side.

There was a likely intent to stack the deck against the connection, but a couple of things stopped that from happening. First, the moderator allowed Mark to finish sentences—a mark of civility that seems to have been forgotten by the likes of Anderson Cooper. The second thing that happened was that one of the doctors, Jeanette Ramer, seems to have ignored the script. She clearly does not put any credence in the research suggesting a link (which may be due to the fact that she clearly had not actually read much—if any—of that research). And she did not have as great a grasp on the facts as she might have.

For the most part, though, Dr. Ramer made her points in a calm and rational manner, without resorting to over-the-top arguments, other than an unfortunate use of what I like to call “the O.J. argument.” You’ve heard it before; if only we didn’t have to worry about those pesky vaccine questions, we could put all our resources into hunting for the “real killers.” At least she did not try to make the absurd argument that there is no environmental factors at all, and that the rise in diagnosis is due solely to an broader diagnostic criteria and better awareness.

That was the type of argument handed to us, though, by the other doctor on the panel, Cynthia DeMuth. She was a through-and-through Offiteer. Dr. DeMuth recited the standard talking points, and even cited (I kid you not) the Danish study as proof that thimerosal didn’t play a role in the epidemic. She also talked about the convincing nature of some goofy study in which “experts” viewed birthday party videos of one-year-olds, who had not yet received the MMR, and they identified which children would later be diagnosed with ASD.

It seemed that at some point, the program became a two-person discussion between Mark and Dr. Ramer. Dr. DeMuth was out of her league, and was properly ignored.

I have no expectations that civility may spread to the ongoing debate in the media. I won’t hold my breath. But it sure was nice to see what Mark can get across when given a chance.

Watch the full episode. See more Smart Talk.

INJECTING SOME SENSE WITH GINGER

2011-01-26T23:00:00.003-06:00

This month on Injecting Sense: The Radio Edition, we'll be talking with Ginger Taylor about vaccine safety, vaccine rights, the Center for Personal Rights, and the new book, Vaccine Epidemic. Join us this Friday, January 28th, at 1:00 p.m. EST, on Autism One Radio (or catch it later in the AO Radio archives).

ADDENDUM

Listen to the show here.

WHY ARE CONSEQUENCES ONLY IMPORTANT ON ONE SIDE OF THE STORY?

2011-01-16T22:18:00.002-06:00

In the debates about vaccine rights, just as in the parallel debates about autism, one does not need to search too far to find hypocrisy. But then hypocrisy comes easily to those who want to oversimplify the issues.

The desire to oversimplify complicated issues leads to the tagging of anyone who might question the safety of the one-size-fits-all vaccination policy as an “anti-vaxxer.” The moral myopia required to use such a misleading moniker and maintain a straight face while doing so is staggering. It is nothing short of the demonization of concerned parents, physicians and scientists who are only asking legitimate questions.

What we hear are broad moralizations about how casting doubt on the vaccination program disrupts herd immunity, leading to the rise of dreaded disease and the death of children. One must first ask if there really is a rise in diseases such as measles among the population of, for the most part, vaccinated children? I am always suspicious of any answer that comes to us courtesy of epidemiology, a peculiar science in which results are completely dependent upon the manner in which the researchers decide to classify data.

Assuming there has been a rise in certain diseases like measles, is that rise due to a relatively small population that is avoiding vaccination, or is it the development of new strains that are resistant to any immunity flowing from inoculation? (Keep in mind that the same people who make the connection between unvaccinated kids and outbreaks of measles are the same guys who always tell us that correlation does not mean causation.) A similar question must be asked about whether the newly diagnosed cases of measles are necessarily more deadly than what we saw before the development of vaccines; this is a malady that was considered a normal part of childhood when I was growing up.

Am I completely off-base here? Let’s look at outbreaks of polio that have arisen on occasion in recent years. At first, we always hear how this was caused by a breakdown in herd immunity because some children weren’t getting vaccinated. Then comes the news that the strain of polio that had been diagnosed actually originated with the vaccine itself. (See, e.g., here, here, here and here). Although the authorities all emphasize that the outbreak is primarily among the unvaccinated, the question must still be raised. Why should the eradication of a “wild” disease result in the creation of a new disease?

But let’s leave aside the question of disease outbreak. Let’s assume that having a relatively small subpopulation of children avoid particular vaccinations might result in isolated outbreaks of disease and perhaps even death. I’m not buying it, but let’s assume it for the sake of a full discussion. Why are those consequences more egregious than the consequences that sometimes flow from receiving routine vaccinations?

Why do some people feel outrage over the death or hardship to a child who contracts a “vaccine-preventable” disease, but not one tear is shed over Elias Tembenis? Elias had his life cut short by the DTaP vaccine. The Vaccine Court did not want to address whether or not his all-too-brief life was made harder by autism brought on by vaccines, but the Special Master had to concede that his epilepsy and seizures, which led to his death, were the direct result of a vaccine reaction (pdf of decision here).

The Tembenis family, who strive every day to have their lost son live through their own good works, are not alone. The Vaccine Injury Compensation Program has awarded billions for death and injury directly caused by vaccine reactions. That money, however, can never repair the damage done.

And then there’s the damage and death that won’t be acknowledged because the cost to the vaccination program would be too great. How many young girls must die because their parents thought they were protecting them from cancer by immunizing them from a STD? How many other girls who get the Gardasil vaccine will live a life filled with suffering in the name of some “greater good,” like the daughter of Amy Pingel?

Then there’s autism. Despite the best efforts of the public-health/pharmaceutical complex to declare the debate over, we still have not determined once and for all what role might have been ⎯ and might still be ⎯ played by vaccinations in the environmental triggering of the ASD epidemic. If those of us who believe that role is significant are correct, then the denialists have a lot of blood on their hands, for there have been far too many lives lost to autism.

I am not asking for anyone to change their mind if they truly believe that the costs of the vaccination program outweigh the risks. It is clear that many of those people understand that vaccines can and do cause wrong, but they think the sacrifice is worth it. I have to say, though, that they scare me more than those who are only in the argument to protect profits. The willingness to ignore the harm is no less disingenuous just because they think they’re right.

If people like that truly believe that the children whose lives have been ruined or even taken by vaccine reactions are regrettable collateral damage whose sacrifice serves the greater good, they should at least have the decency to acknowledge that sacrifice. They should be willing to stand face-to-face with Harry and Gina Tembenis, and with Amy Pingel and her daughter, and explain why they think the sacrifice served society.

And if there’s anyone out there who thinks their child was harmed because some other child didn’t get fully vaccinated, I’ll be glad to talk to them and share with them the stories of countless children who have been harmed. To be unwilling to do so would be hypocritical.

STANDING

2011-01-08T11:08:00.004-06:00

On Wednesday, after the news outlets all broke the sensational headlines that “the” study linking vaccines to the autism epidemic had been reported to be a fraud, Mark Blaxill wrote the following:

The desperation of the medical industry to defend it profits and programs is never more on display when they launch a new attack on Andrew Wakefield. Today’s allegations are not new, they are just an attempt to capture another news cycle and ABC and CNN gladly oblige. This is a time that reminds me of Edmund Burke’s quote, “all that is necessary for evil to triumph is for good men to do nothing.” I stand with Andy.

There was a time in my life when I had planned on going into journalism. As it turned out, my life’s path took me in a different direction. There have been times when I wondered if I shouldn’t have stayed in that field. After this last week, though, I’m kind of glad I’m not a journalist; I’d hate to have to explain the complete lack of moral and/or intellectual integrity that was displayed by too many in that field.

I’m really not sure what was worse. Was it Brian Deer’s cynical and dishonest persecution of Dr. Andrew Wakefield, or was it the total buy-in of people like Anderson Cooper ⎯ one of the few guys in the mainstream media I thought was worth a damn? I was certainly wrong about him.

The media fell over itself breaking the astounding news that the British Medical Journal was calling the original case series by Dr. Wakefield, et al a “fraud.” Did none of those enterprising reporters have the time and energy to look past the headline and examine the story itself? Does the work of a tabloid journalist acquire credibility simply because it’s published in a “prestigious” medical journal with ties to the pharmaceutical industry?

The mainstream press has been pounding on its theme: pity the poor, misguided parents who desperately turned to a charlatan for answers. Well, to paraphrase J.B. Handley, we don’t need your sympathy; we need the truth, with all its details and nuances.

Reporting the truth, though, requires effort. And reporting the whole truth may conflict with the business philosophy of publishers and networks ⎯ an attitude that filters down to editors and reporters: simplistic sensationalism sells!

Why risk losing your audience by presenting all of the facets of a very complex issue. It’s easier to boil down a position (especially a position attractive to the industry that spends the most advertising dollars) to the personification of a single individual. In the view of the arrogant media, the public is far more prepared to watch the downfall of a man than they are willing to think about ideas that many men and women have developed and debate.

That’s the present Brian Deer gave to the mainstream media, to the absolute satisfaction of the pharmaceutical/public-health establishment. He created a straw man to knock down and create a loud noise in its fall.

What the media fails to understand, though, is that the only similarity between that straw man and Andrew Wakefield is the name. The Andrew Wakefield created by Brian Deer is a myth. He’s fictitious. And he’s as devoid of substance and truth as is his creator.

The real Dr. Wakefield is not so easily knocked to the ground. He has proven time and again that he can stand tall against lies. He stands with us.

And I stand with Andy.

A PROGRAM NOTE

2010-12-26T20:19:00.002-06:00

This month on Injecting Sense: The Radio Edition, we'll be talking with Lori McIlwain about the problems faced by caretakers of autistic individuals who wander or run off. I'm also reserving a little time to editorialize a little about my favorite shill and his pals. Join us this Tuesday, December 28th, at 1:00 p.m. EST, on Autism One Radio (or catch it later in the AO Radio archives).

THIS MONTH ON INJECTING SENSE: THE RADIO EDITION

2010-11-27T00:18:00.002-06:00

This month on Injecting Sense: The Radio Edition, we'll be talking with John Gilmore, the Executive Director of the Autism Action Network. We'll talk about advocacy in general, and discuss the battle for insurance coverage in New York. Join us this Sunday, November 28th, at 1:00 p.m. EST, on Autism One Radio (or catch it later in the AO Radio archives).

WHAT AMC WON’T SHOW

2010-11-25T23:32:00.000-06:00

This holiday weekend, several movie theaters in the AMC chain were supposed to run a pre-movie PSA prepared by SafeMinds. The message was simple. If you really have to have a flu shot this year, make sure you get one without thimerosal. It might cost a bit more ⎯ and heaven forbid, the manufacturer’s profit margin might not be as large ⎯ but it’s worth it.

Well, that message didn’t sit too well with some folks. There was an orchestrated effort to register complaints, and AMC decided that they wouldn’t run the PSA’s after all. Now this is a chain whose local theaters routinely run ads for political candidates. Some recently ran a spot for Glen Beck’s show. And this was too controversial for them?

The complaints were misinformed, and resorted to the pandering, shorthand label of “anti-vax.” Below, you can see what AMC was afraid to show you. And I defy anyone to explain how this spot is in any way “anti-vaccine.”

I don’t know what ad AMC will show instead. What I do know is that I won’t be there to find out.

DISASSOCIATIVE BEHAVIOR (OR ABSENCE THEREOF)

2010-11-06T12:45:00.002-05:00

There was a time when a civil dialog sprung up between some of us within the “curebie” community on the one side and a few members of the neurodiversity community (the folks who preach that the dignity of being autistic outweighs the value of recovery or cure) on the other side. This blog was one of the places where those discussions took place. Eventually, the thin patina of cordiality broke down, and the discussions ended.

Two issues were raised by some members of the neurodiversity crowd that seemed to play a large role in the cold shoulder that eventually was turned in my direction. One was my refusal to “disassociate” myself from another blogger who was vociferous in his belief in a vaccine-causation theory and in the necessity of cure, but who I would nevertheless describe as being not-at-all-representative of the feelings of most of us in the cure community. I saw no reason to disassociate myself from someone I did not consider myself to be associated with in the first place. (To be truthful, they also said I should disassociate myself from J.B. Handley; in that case, we had no formal association but I would have been proud to have had one.)

The second issue that seemed to fester within the neurodiversity crowd was my reluctance to immediately label the killing of Katie McCarron as a “murder” before all the facts were known and the matter had been adjudicated. Eventually, the legal process took its course, and I then felt it appropriate to comment on the justice of the outcome. The response from those who had been so critical was a resounding “whatever.”

Those incidents immediately came to mind as I read a recent blog post by Jonathan Mitchell. Jonathan is the author of Autism’s Gadfly, and he identifies himself as an “Autistic who wishes a cure could be found.” That obviously places him at odds with the neurodiversity crowd, and not surprisingly, he has been the object of their frequent scorn.

In this post, Jonathan commented on the lack or reaction to the recent arrest of Nick Dubin, a psychologist who has aligned himself with the neurodiversity movement. Dr. Dubin has been accused ⎯ and I stress that it is only an accusation at this point ⎯ of downloading child pornography. More to the point, Jonathan’s recent post was not about the arrest itself (although he has written about that previously), but rather to point out the lack of any reaction from the leaders of the neurodiversity movement, with whom Dr. Durbin associated himself.

Here’s the real meat of what Jonathan wrote:

Outside of the right not to be murdered, it would seem the right of disabled children not to be sexually molested would be about the most important of human rights that these august individuals would be crusading for. You would think that they would comment on this latest news story.

Consistent with my past conduct and still-held beliefs, I will not join Jonathan in commenting on the possible guilt of Nick Dubin. I’ll let the judicial system do the work it’s designed to do. But I think Jonathan raises a very fair question with regard to Kevin Leitch, Michelle Dawson, and others in the neurodiversity movement. If you’re going to decry criminal conduct that has not yet been adjudicated as such; if you’re going to call for others to disassociate themselves from people; well, you can’t just reserve your outrage for situations involving the other side.

Although Jonathan doesn’t use the word, what we’re really talking about is hypocrisy. It’s something I’ve talked about before. And it’s one reason we see such polarization in the ongoing discussion of important questions and issues.

HEARING SENSE

2010-10-28T08:11:00.002-05:00

Injecting Sense comes to the airwaves . . . well, net waves. The folks at Autism One Radio have taken leave of their senses, and have given me a half-hour each month to spout off.

The first installment of Injecting Sense (the Radio Edition) is scheduled for October 28, 2010, at 1:00 pm EDT. It should be available in the archives after that.

In the first installment, we’ll discuss the new book, The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic. I’ll play an interview I recently recorded with the authors, Dan Olmsted and Mark Blaxill.

Tune in, and let me know what you think.

* * * * * * * * * * * * * * * * * * * * * * * * *

The archived first show can be found here.

SHAPING THE FUTURE

2010-09-09T14:02:00.001-05:00

A couple of weeks ago, I observed a couple of anniversaries that raised some mixed feelings. It’s been five years since Hurricane Katrina devastated our beloved New Orleans and Gulf South, and it’s been one year since I joined the ranks of America’s unemployed.

(If anyone wants to know our Katrina story, it can be found in the archives of that time. Go to August 2005 in the archives in the sidebar of the blog, and then work your way up into September and beyond.)

About a year after the storm, we decided to move away from South Louisiana because the sparse services our son was getting before Katrina were nonexistent after. I left the practice of law and embarked on a new career path, working as a claims professional for a major insurance carrier. There was no reason to study for and sit through the bar exam up here; I had a good job in a related field.

Things went pretty well for a while, but then the economic collapse hit. It was a bad time to be employed in the financial services sector. When my position was eliminated, I thought my down time would be relatively short. After all, I lived in an area with lots of major offices for insurers, consulting companies, and other large corporations. What I hadn’t counted on was that my employer was not alone in scaling back. As one prospective employer told me on during an interview, “when we posted this position we had no idea there were so many of you guys out there.” I’ve lost count of the résumés that have gone out, but the result has been damn few interviews and no solid offers.

So lately I’ve had a lot to think about on the job front. Do I separate the family and return to Louisiana to practice law, while my wife and son remain here to continue the healing process? Do I invest time and money I don’t have into bar admission up here, with questionable job prospects for someone with no major connections and who’s been out of the game for a few years? Or do I look into yet another new career path?

Through it all, I have been able to maintain a sense of hope. Perhaps that is by virtue of being a New Orleanian in exile.

When we left Louisiana, we thought we could no longer call that part of the world our “home,” but we were wrong. We love living in the Chicago area, and we don’t picture pourselves moving back. But as the last few years have passed, we have realized what is meant by the expression that one is not “from” New Orleans, but rather one is “of” New Orleans. We miss the food, we miss the music, we miss the events, we miss the people, and we miss all of the little things that made it possible to live in what a truthful person has to admit was a banana republic (and please note my use of the past tense there).

We find ourselves reconnecting through television. Spike Lee’s documentaries on the disaster were spot-on. With Treme, the entertainment world finally got it right. Seeing our Saints’ journey last football season, along with the post-Super Bowl partying, made us yearn for home. And then there was the abundance of Katrina-related programming on television to commemorate the anniversary.

On occasional trips back home, we’ve done more than just fill up on the cuisine and listen to a few tunes. We’ve been able to see first-hand how the area is moving forward with its recovery. For a long time, it seemed like the entire populace still had the communal case of PTSD we saw in the year between the storm and when we moved away. Over time, though, we began to see and hear about changes we didn’t think possible.

Last spring, we saw for ourselves what Brad Pitt’s Make it Right Foundation is doing to encourage affordable and sustainable housing in the Lower Ninth Ward. We’ve heard about Wendell Pierce’s Pontchartrain Park Community Development Corporation, and how it’s working to restore a historic neighborhood that the government was ready to write off. Now, the City is starting over with a new mayor who brings an added optimism for the future even as he honestly acknowledges the problems.

What we see in New Orleans is a place that is reinventing itself to preserve what’s worth saving by reinventing the way it does things.

And so it goes with me. If my old career paths aren’t working, I’ll find a new one. I’m searching for a position that can use the talents and skills (analysis and writing) I’ve worked hard to hone. (Any prospective employers are encouraged to use the email link in the sidebar on the right.)

Like New Orleans, I am embracing change to shape my future.

LOST LIVES, CRIMINAL INDIFFERENCE, AND HYPOCRISY

2010-08-12T20:54:00.003-05:00

Lately it seems like every day my Google news alert, set to alert of any items involving “autism,” brings me a new story of an autistic child or adult whose life was snuffed out. The exact mechanism changes from case to case, but the root cause remains the same. The victim died, in large part, because he or she was autistic.

Often the victim slips unseen into a pond or pool due to an insatiable fascination with water. Or maybe the victim wanders off during a hike or camping trip. Sometimes, the victim just slips away.

Too often, we are finding out that a parent succumbs to whatever demons are inside of them, and they perpetrate a homicide. Other times, a homicide is committed by a professional caretaker. Our kids make easy targets; many lack an innate sense of danger.

A new site, maintained by parents of children on the spectrum, has sprung up to remember those victims. It’s called Lives Lost to Autism. It’s simply a posting of news items. There is no commentary to condemn any individual; that’s the job of the legal system. Comments by readers are not allowed, so there is no distracting political debate. The focus is squarely on the victims. This site is “autism awareness” in its most basic form.

Some time ago, in the wake of Katie McCarron’s death at the hands of her mother, some bloggers ⎯ including yours truly ⎯ were taken to task for something we weren’t saying. In essence, some thought we should have loudly decried the murder of an innocent, and condemn those who questioned whether the stress of raising an autistic child played into the killing.

My response at that time was that I was unprepared to label something as a “murder” (a word with a specific legal meaning) when the facts had not yet been adjudicated in court. I later commented when the jury meted out a measure of justice, and defined the action as a mnurder.

Frankly, my initial reluctance to discuss the case was also due to my complete inability to comprehend the actions of any parent who would take the life of his or her child. Unfortunately, there have been too many opportunities to try and understand those kinds of things since then. I still can’t comprehend it, but I can join in trying to honor the lives of the victims. Hopefully, if enough attention is drawn to the seriousness of this growing problem and enough people start caring, maybe someone in power will feel pressured enough to do something. A single web site can’t accomplish all that, but it’s a start.

Ironically, the first criticism of Lives Lost to Autism has come from the same person who led the criticism of our prior silence. Kevin Leitch argues that the new site goes about the task badly, because to “politicize it so graphically and so ham-fistedly is wrong.”

“Politicize” the issue?!? Really?!? The whole point of not inserting the poster’s commentary is to keep the focus on the victims without making them symbols for a political agenda.

But Kev says that the use of the phrases, “lives lost to autism,” and “lives cut short by autism” make it sound like autism itself is being blamed for murder. The site says that nowhere. Murder, by definition, is the act of a person or persons. The fact that a victim is autistic is most assuredly not a justification for homicide. Not all of the deaths listed at Lives Lost to Autism, however, are homicides. Moreover, one cannot ignore, however, that these victims died because they were autistic.

Kev’s real problem is not with the site or the way it’s been set up. His real problem is that his hypocrisy is showing. When Karen McCarron, who had been identified as being a member of the “cure” community, killed her daughter, Kev and the other members of The Autism Hub devoted an untold number of posts to the incident and its aftermath. Doing so was not in itself wrong; in fact memorializing a victim is a good thing to do. In doing so, however, the labeling of the incident as a “murder” before all the facts were known, and more to the point, taking others to task for not following the same course, was exactly what Kev now accuses the people behind Lives Lost to Autism of. They politicized a tragedy in a ham-fisted manner.

There have been far too many other incidents in which autistic children have been killed by their parents since the McCarron tragedy. To be sure, there have been a few mentions of those incidents by various members of The Hub. For the most part, however, the silence has been deafening. The only distinguishing characteristic between the McCarron murder and the other cases is that the accused perpetrators have no connection to the cure community. That deprives Kev from pointing a finger at those who would have the temerity to want to remove a disability, and say, “see, they are so hung up by what their children are that they don’t see their humanity.”

Not seeing the humanity of a child is not a function of believing that the process of cure or recovery can improve a child’s life. As I have often said, I accept my son just as he is, but I do not accept the inevitability of his current disability.

At the end of the day, Lives Lost to Autism is not about curing autistic children. It’s not against “celebrating diversity.” It’s about reminding a nation and the world that there is a cost for allowing this epidemic to get to this point. There is a cost for our government, our medical establishment, the media, and society itself turning its collective back on the problem and pretending it doesn’t exist. And the cost for society’s criminal indifference is all-too-human.

ADDENDUM:

After the above was posted, Ginger, who originated Lives Lost to Autism, posted her own explanation for the need. Go check it out here.

INDEPENDENCE

2010-07-05T19:27:00.001-05:00

I’m always a little cautious in how I use the words “cure” and “recovery.” When it comes to reversing the disabling manifestations that come with ASD, “cure” is a process, and not a result. And “recovered” is too final; who is to say how much recovery is possible? But every now and then we get a little reminder of just how far we’ve come.

The Little Rankster has come a long way from the dire predictions we received with his diagnosis. It’s the little moments that drive the point home for us.

Last night was the Fourth of July: Independence Day. To watch the fireworks display in our little suburban community, we found ourselves going to a nice green space some distance away from our neighborhood. We were surrounded by hundreds of families, none of whom we had ever met.

The fact that we were going to see fireworks at all would have been remarkable a few years ago ⎯ too much noise. A few years ago, the first time our son was able to just sit there and enjoy the beauty of the display, was one of those moments of victory. He eventually became a pyrotechnic aficionado. Last night, though, the Little Rankster was out for more than just sitting back with the noise and light.

We were worried about how we could keep the boy amused for the 45 minutes or so between our arrival and the start of the show. Our worries were needless. As soon as we started setting up the chairs, the Little Rankster informed us that he really preferred to run with the other kids rather than hang out with us. Many of the other families had come prepared with sparklers for their children. We had to apologize to our son for being so unprepared, but he had never been so bold as to want one before. But we watched as our little boy ran from family to family of complete strangers mooching sparklers. My wife and I weren’t sure if we should have been mortified or ecstatic. We chose the latter.

As it grew dark, we were having more and more difficulty keeping an eye on our son. There was no anchoring him to us, however. He was having fun joining in with other groups of kids. He was declaring his independence from his parents.

We’re not ready to declare victory just yet. The process of cure and recovery goes on. Every now and then, though, it’s good to just sit back, think about how far we’ve come, and enjoy the fireworks.

WELL, THIS JUST SUCKS

2010-07-01T15:35:00.001-05:00

SETTING THE RECORD STRAIGHT: A RALLY RECAP

2010-06-04T19:59:00.017-05:00

Last week was the combination of the Autism One Conference and the American Rally for Personal Rights. I was very involved in both, and I am justly proud of both events.

It’s been fun to see some of the commentary from bloggers on “the other side” of the issue ⎯ some, but not all, of whom were at the rally. They mischaracterized what was said; one pulled a juvenile prank; they trumpeted their bravery in showing up; but most of all, they just seemed incapable of counting.

The estimates from the neurodiversity and “skeptic” bloggers grossly underestimated the size of the crowd in a range of “100 or so” to “less than 200.” The smallest of those estimates came from Ken Reibel, who apparently was trying to dispel the myth that everyone on the spectrum is a math genius. Based on his blog post, he seemed to base his estimate on the fact that we had lots of bananas left over (those bananas were available in plentiful supply after being donated by a kind sponsor). Ken went so far as to address a comment to me on the previous post, asking if I was disappointed in the attendance. The short answer is “not at all.”

Every permit application we filed with the Park District and various City agencies (and I should know; I personally completed, signed, and filed each of them) clearly stated that we expected no more than 500 people, including “bystanders.” Indeed, if we had received the “thousands” of attendees one blogger said we were expecting, we would have faced some pretty stiff fines and penalties. The fact is, we anticipated anywhere between 200 and 500 people, and we had attendance in that range. And that was pretty good for a Wednesday mid-afternoon in downtown Chicago. Add to that the hundreds that joined on-line, and this inaugural event for the Center for Personal Rights did quite well indeed.

Some internet wags, who weren’t there, based extremely low estimates on what they saw on various movies or on the internet feed. Of course, most of those were shot from the middle of the grove, where the fewest number of people were congregated; most chose to sit off to the side in the shade (the day was quite hot).

So Ken Reibel based his estimate on the number of bananas left over and the fact that not all of the prepared signs were used. (The rally had 150 signs prepared; 100 were used; about half of the crowd held signs, and about one-third to one-half of those were signs made by the participants rather than provided by the rally. You do the math.) We chose a slightly more primitive method of crowd estimating. We counted people rather than fruit. I cannot represent any of our counts as being completely accurate given the roaming nature of the attendees at an event like this, but everyone who actually attempted to perform a count came in with a consistent figure of over 300.

What makes the underestimating of our attendance all the more comical are statements by those same commentators grossly inflating the number of “counter-demonstrators” there. In truth, it was the least demonstrative counter-demonstration one could imagine. Approximately five students stood on the sidewalk and passed out “Hug Me, I’m Vaccinated” leaflets to passers by. And of course, there were a few self-styled “infiltrators,” who have been quick to pat themselves on the back for their bravery on their various blogs, etc. We were more than willing to tolerate their presence provided they behaved civilly, and they did for the most part.

The one exception was the woman who gleefully approached Dr. Wakefield, pretending to be a fan so she could pose for a smiling photo, after which she passed him an insulting note. Don’t get me wrong, I’m as big a fan of sophomoric humor as the next guy. But it seemed an inappropriate act for someone who claims to be appalled by the societal dangers of making vaccination less-than-mandatory, particularly in the shadow of a stage where there were personal stories of death and crippling consequences of vaccines administered to susceptible individuals.

And that brings me to what I really want to write about rather than the side issues trumpeted by the rally’s detractors. The program was outstanding. To be sure, we heard experts in the law, history and public health give us solid intellectual reasons for viewing vaccine choice as a fundamental human right. And the main attraction was, of course, Andrew Wakefield, who has been sacrificed by the medical community he has served so well on an altar to the public-health establishment. But the true impact came from the people who were able to tell us in an all-too-personal way just why an inflated and mandatory immunization schedule presents a danger.

We heard from Amy Pingle, whose teen-aged daughter now breathes through a tracheotomy and is fed through a tube, all because of an adverse reaction to the Gardasil vaccine. We heard from Capt. Richard Rovet (U.S.A.F., Ret.), who as a nurse in the military saw what amounts to nonconsensual experimentation, and he kept records of thousands of adverse reactions to those who serve us. Capt. Rovet tearfully described watching one of his friends die as a result of one of those events. We heard from Alex Hintz, a brave 13-year-old boy, who has been recovering from a vaccine injury. We heard from Allen Tate, a college student (and an outstanding young man I got to know), telling the world of the vaccine injuries to his two siblings.

Those personal vignettes were not intended to deter anyone from making a choice to not vaccinate. Rather, those speakers merely laid out what we have come to know; adverse events do occur, and more often than the vaccine manufacturers, medical associations and public-health authorities want to admit. And if there is a risk, there must be informed consent. The current religious and philosophical exemptions ⎯ an all-or-nothing approach not even universally recognized ⎯ are insufficient to protect the fundamental right to choose what foreign substances we place in our body in the guise of medical treatment.

High-quality videos from the rally, with minimal editing, are starting to be posted on the official site, and should also soon be available at F.A.I.R. Autism Media.

Before closing this post out, I also need to say a few words about the annual Autism One Conference, also held last week (this year, with additional participation by Generation Rescue).

I really didn’t get to attend many of the sessions this year, as I was being kept pretty busy in my role as a volunteer for the conference. My wife, who coordinates the medical treatments in our house, made quite a few (and also presented a couple of times). The presentations I did see were all informative, and the presenters made themselves readily available for questioning.

Beyond the formal sessions, however. Autism One has always provided an amazing atmosphere for attendees. Parents are made to feel supported, and children are free to be as autistic as they are, without anyone batting an eye. Even recognizing the fact that most of us would have preferred to forego the necessity of meeting under these circumstances, I have made friendships that will last the rest of my life.

My thanks to Ed and Teri Arranga, Laura and Shawn Rowley, Lisa Rupe, and a host of incredible volunteers. I consider it nothing short of a privilege to have been a part of the AO family this year.

Even Ken came to support vaccination choice, informed consent, and parental rights!

THE CHICAGO PRINCIPLES

2010-05-24T13:22:00.001-05:00

The American Rally for Personal Rights, to be held in Chicago’s Grant Park this coming Wednesday, May 26, is not intended to be a one-day effort. It marks the birth of the Center for Personal Rights, dedicated to the same principles as the rally itself. Those principles have been reduced to a statement that has been dubbed “The Chicago Principles on Vaccination Choice:”

We, the people who affirm our belief in personal rights, in order to promote the general health and welfare for ourselves and our children and to establish justice, advocate the following principles:  

1. Vaccination choice based on complete and accurate information is a fundamental human right.  

 2. The right to conscientious objection from vaccination mandates, namely the right to a philosophical exemption, is a fundamental human right.   

3. Laws that make education, employment, daycare and public benefits contingent on vaccination status, except in the most extreme of public health emergencies, violate the fundamental human right to vaccination choice. 

 4. When vaccination is used as a preventive medical intervention for healthy individuals, the precautionary principle must apply. If there is no public consensus about the need for or safety of certain vaccines, they should neither be recommended nor mandated for universal use.   

5. Individuals who are in a position to evaluate, recommend and mandate vaccines must be free of all actual and perceived conflicts of interest.

CALLS FOR IMMEDIATE ACTION IN THE UNITED STATES  

1. Congress should conduct oversight hearings on the national vaccine program, including mandates for the military and immigrants, examining vaccine safety, conflicts of interest, suppression of science, evidence of vaccine injury, and comparative empirical data from countries with differing vaccine schedules.  

2. Congress should immediately initiate a study of vaccinated versus unvaccinated populations for long-term heath outcomes. Such a baseline study has never been done, suggesting that the vaccine schedule as a whole is an experiment on human subjects. This bill is called the “Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act” and was originally co-sponsored by Rep. Maloney (D.- N.Y.) and Rep. Osborne (R. – Ne.). 

 3. Congress should create an independent Agency for Vaccine Safety Research. This agency must be completely separate from the Centers for Disease Control, which promotes federal vaccination recommendations for state mandates. This bill is called the “Vaccine Safety and Public Confidence Assurance Act” and was originally co-sponsored by Rep. Weldon (R.-Fl.) and Rep. Maloney (D.- N.Y.)   

4. Congress should abolish the Vaccine Injury Compensation Program or make it optional. The Program has failed in its purpose to quickly, generously and administratively compensate families for vaccine injury and to improve vaccine safety.  

5. Vaccine manufacturers should be subject to ordinary tort liability and civil trials for vaccines. All statutes that shield vaccine manufacturers from ordinary tort liability for vaccine products, such as the National Vaccine Injury Compensation Act (1986) and the Public Readiness and Emergency Preparedness Act (2005), violate the U.S. Constitution’s Seventh Amendment right to a trial by jury in civil cases.

If you support this statement, please go here to sign the on-line petition. And join us Wednesday in Chicago (or on-line if you can’t be there in person).

HE PROBABLY THINKS THIS POST IS ABOUT HIM

2010-05-21T20:39:00.002-05:00

The President’s Cancer Panel (pdf here) recently issued a report detailing specific recommendations about potential environmental factors contributing to skyrocketing cancer rates and what we can do to minimize those risks. It’s all sounds pretty familiar to those of us whose experience living in the autism epidemic has caused us to look at the role environmental insults play in the spread and exacerbation of autoimmune disorders, including ASD. Gee, it turns out that organic produce, grass-fed beef and avoiding environmental toxins might actually be good for us. Who’d a thunk it?

The report is a remarkable ⎯ especially as it comes courtesy of the federal government ⎯ 240-page document that’s well worth a read. And it’s gotten praise from a couple of interesting sources.

First, we heard from the New York Times, in an excellent op-ed piece. It is beyond encouraging that the most mainstream of media outlets is willing to say that we just might need to rethink the way we live our lives, even if it means that corporate America might need to live with less profits.

Then I came upon a very surprising commentary on the report. I was not so surprised that the mighty Orac would want to discuss a report about cancer; after all, that is supposedly how he makes a living (as an oncological surgeon and researcher). But much of what he had to say brought a smile to my face.

I have to confess that I’ve always had a bit of an odd fondness for Orac. Not long after the Little Rankster was diagnosed as being on the spectrum, my wife began to attack the problem from a medical standpoint. She eventually became convinced of something that initially struck her as being counter-intuitive to everything she had learned ⎯ that ASD might be triggered by damage from vaccines (or something in them), and that it can be treated biomedically to undo that damage. My wife is one of the smartest people I’ve ever known, so when she became convinced, I knew I had to take a look at the hypothesis. My research led me to the oh-so-dangerous internet, where I became fascinated by the scientific and political debate. And that led me to Orac.

I don’t even recall what post it was at the Huffington Post, but there was a real lively discussion going on in the comments. The two most interesting people commenting, on opposite sides of the question, were both doctors: Alan Clark and Orac. Dr. Clark inspired me with his intelligence, his passion, and his integrity. (It is one of the great regrets of my life that did not get a chance to meet Alan before his untimely death, but I have been lucky enough to have a treasured friendship with his wife, Lujene.) Orac inspired me in a somewhat different way. After a little friendly sparring at HuffPo, I went to Orac’s blog and checked it out. My first thought was, “oh hell, I can do that.”

Despite sharp disagreement on the issues of autism causation and treatment (a dilemma Orac never had to face on a personal level), and the broader issue of vaccine safety, Orac and I stayed on fairly good terms for a couple of years, exchanging thoughts and greetings both on- and off-line. That ended after I declined his suggestion to “disassociate” myself from the instigator of a famous internet prank (in retrospect, it seems even funnier than it did at the time) which targeted Orac (see here and here).

It was probably about time anyway that we dispensed with the trappings of cordiality. By that time, Orac, despite the tongue-in-cheek tone of his blog, had started to take himself way too seriously. His pronouncements of what is and is not science began to take on the clothing (albeit the same cloth used to tailor the emperor’s new clothes) of purported infallibility.

But then again, he always had that white-coat arrogance wherein he refused to recognize any science that did not meet his expectations. Once he had determined for himself what the science of vaccine safety and autism was, no additional data would make him change his mind. And if those who thought differently might expand a hypothesis based on additional observation ⎯ a very reasonable exercise of the scientific method ⎯ such expansions would be laughed away as “moving the goal posts.”

Arrogance like that, though, borders on hubris, and often leads to amazing inconsistencies. And that leads me to Orac’s recent review of the President’s Cancer Panel report (or as Arlo Guthrie once said: “I told you that story so I could tell you this one”).

Orac has always been one to speak of the vaccine-autism controversy as a closed subject. He believes that science has spoken and clearly rejected any connection based on the epidemiological studies that vaccine defenders point to time and again. Like most such defenders, Orac ignores the fundamental flaws in the methodology of those studies as well as the obvious conflicts of interest that weigh against credibility. That’s why I found myself smiling to see the following passage in Orac’s discussion of the President’s Cancer Panel Report:

As tough as biomedical research is in cancer, to my mind far tougher is research trying to tease out the relationship between environmental exposures and cancer risk. If you want complicated, that’s complicated. For one thing, obtaining epidemiological data is incredibly labor- and cost-intensive, and rarely are the data clear cut. There’s always ambiguity, not to mention numerous confounding factors that conspire to exaggerate on the one hand or hide on the other hand correlations between environmental exposures and cancer. As a result, studies are often conflicting, and making sense of the morass of often contradictory studies can tax even the most skillful scientists and epidemiologists.

So let me get this straight. When one is trying to determine the relationship between environmental insults (including vaccines) and the triggering of autism spectrum disorders, even badly designed epidemiological studies can prove conclusive, no matter how provocative findings in clinical and laboratory settings may be. But in the case of cancer, it’s “complicated.”

That very same paragraph compounds the intellectual inconsistency:

Communicating the science and epidemiology linking environment and cancer to the public is even harder. What the lay person often sees is that one day a study is in the news telling him that X causes cancer and then a month later another study says that X doesn’t cause cancer. Is it any wonder that people are often confused over what is and is not dangerous? Add to this a distinct inability on the part of most people, even highly educated people, to weigh small risks against one another (an inability that has led to phenomena such as the anti-vaccine movement), and the task of trying to decide what is dangerous, what is not, how policy is formulated based on this science, and how to communicate the science and the policy derived from it to the public is truly Herculean.

Somehow you just knew, didn’t you, that Orac would get in a dig at what he labels the “anti-vaccine movement.” We differ, of course, on the semantics. I would call it the “safe vaccine” movement, but in Orac’s mind, if you ain’t 100% for the current schedule, you’re an “anti.” Besides, labeling those who disagree with you as “anti-” something makes for a nice, short-hand ad hominem (oh God, I don’t believe I said that).

Beyond the use of an inaccurate label, though, Orac displays arrogance of a truly Offittian magnitude. In his mind, anyone who does not wear a white coat to work is utterly incapable of understanding the subtleties of the scientific method. We are incapable of being able to exercise appropriate judgment in weighing “small risks.” Of course, he simply takes it on face value that the risk of adverse effects from vaccines is small, and any evidence to the contrary is discarded as unreliable.

Orac’s post is rich in irony. One of the recommendations of the panel, seemingly finding favor in Orac’s mind is the following:

The adoption of a new “precautionary, prevention-oriented approach” to replace our “current reactionary approaches in which human harm must be proven before action is taken to reduce or eliminate exposure.” As a part of this approach, it is recommended that the burden of proof of safety should be shifted to the manufacturer, rather than the current burden of proof being upon the government to prove harm.

Really. Would Orac agree that it might be a good idea to apply that same principle to studying the long-term impact of not just individual vaccines and components, but also of the synergistic effect of all of the vaccines on the current schedule? Up to now, he seems to have felt that members of the public, rather than manufacturers or the government, should bear the burden of funding any such research.

I almost shot my morning coffee through my nose when I read Orac’s whole-hearted approval of the Panel’s discussion of environmental factors in childhood cancers:

The report emphasizes quite strongly that what we know about the environmental contribution to cancer has lagged far behind our knowledge of other aspects of cancer. More importantly, one aspect of the environmental contribution to cancer that we often don’t consider strongly enough is that children tend to be more susceptible to environmental insults of many kinds, particularly carcinogenic insults:
An analysis by the National Academy of Sciences found that children are particularly vulnerable to environmental contaminants for several reasons. Due to their smaller size, children’s exposures to toxics are disproportionately large compared with adults. Because their metabolic pathways are immature (particularly during fetal development and in the first months after birth), they are slower to metabolize, detoxify, and excrete many environmental chemicals. As a result, toxins remain active in their bodies for a longer period of time than would be the case in adults. In addition, children have lower levels of some chemical-binding proteins, allowing more of a toxic agent to reach various organs, and their blood-brain barrier is more porous than that of adults, allowing greater chemical exposures to the developing brain. Children’s bodies also are less able to repair damage due to toxic exposures, and the complex processes that take place during the rapid growth and development of children's nervous, respiratory, immune, reproductive, and other organ systems are easily disrupted.

Replace the word “cancer” with your choice of “autism,” “autism Spectrum disorders,” or “developmental delays,” and he sounds like one of us. And wait until you see what Orac had to say about the dramatic rise in childhood cancers, even while the mortality rate dropped:

The reason for this increase is not known, but genetics is an unlikely cause for such a rapid increase. In addition, it is unlikely that better diagnosis due to the introduction of MRI and better CT scanning is likely to be the cause, because the increase is too steady. That leaves environmental factors as one suspect for a major cause.

Gee, Orac, are you sure that the rise in diagnoses was not just due to increased awareness? Or maybe it’s just a lot of parents that want all the services available to sick kids.

It seems that Orac is the perfect example of selective belief in the intractability of scientific “fact.” Because the science suggesting a link between vaccines and ASD is still emerging, the hypotheses are constantly being refined. Orac, and others of his ilk, scoff at that evolution and say that we are “moving the goal posts.” But when it comes to cancer science, his song has a different lyric:

One recommendation of the report that intrigued me was its assessment of how science has generally focused on one compound at a time without considering how they may interact. This reminds me of how in the past we concentrated on one gene at a time as a causative agent for cancer (such as oncogenes); yet over the past ten years it has become increasingly clear that cancer is often driven by many genes, each of which individually plays a relatively small role.

It’s easy to understand how Orac came to the arrogance that shines through his prose. First, it’s not an uncommon characteristic among his profession. Beyond that, however, it cannot be denied that he has become famous through his blog. He writes in a lively style, and his sophomoric humor plays well with jaded grad students. He purportedly gets site visits in numbers that any blogger would envy. That’s enough to give anyone a swelled head.

On a personal level, he’s probably not a bad guy. David Gorski is likely a faithful husband, I certainly doubt that he would kick his dog, and he might even take his turn at buying rounds when he’s at the local tavern. But as Orac, he’s so arrogant as to be completely blind to the inconvenient truth that is hitting him in the face. And he’s not alone.

Orac, and far too many of his ilk, look at things like the report of the President’s Cancer Panel, and they fail to see ⎯ or at least fail to acknowledge ⎯ that what they’re seeing is just one part of a multifaceted picture, showing what we’re doing to the immune systems of the latest generations. I pray that they start hoping their eyes and minds in time to start saving the generations to come.

BE THERE

2010-05-17T06:42:00.003-05:00

Wednesday, May 26, 2010. Chicago's Grant Park. For more information go here.

ALL IS NOT WELL

2010-05-13T12:53:00.002-05:00

Early in his movie career, Kevin Bacon played a character named Chip Diller, in the seventies classic, Animal House. His role was small, but he contributed two scenes that were oh-so-memorable.

During a pledging ceremony at the evil and exclusive Omega house, young Chip is repeatedly paddled on his posterior. With each new helping of pain and potential harm, the new pledge is made to exclaim, “Thank you sir, may I have another.” Later in the movie, we see Chip, dressed in his ROTC uniform, acting as a parade marshal for the homecoming festivities. In response to the mayhem created by those bad boys from Delta house, Chip screams out that everyone should “remain calm; all is well.” Of course, all is not well.

I’ve been thinking of Chip lately while observing the coverage ⎯ or to be more precise, the lack of coverage ⎯ of the disclosures that extraneous DNA from pig viruses (and other foreign bodies) was found in both of the Rotavirus vaccines.

For a good discussion of the problem, see these posts (here, here, here, here, here, and especially here) in Age of Autism.

Here’s the basic background. First, in March GSK’s Rotarix vaccine was found to contain DNA from PCV-1, a pig virus. The FDA suspended its use, pending review. Of course, in the meantime, that left the market clear for the sole competitor, Merck’s RotaTeq (developed by our old pal, Paul Offitt).

Then shortly before the FDA hearings on the Rotarix tainting, it was discovered that the RotaTeq vaccine, in fact, contained DNA from two pig viruses, PCV-1 and PCV-2.

The FDA meeting on the Rotarix fiasco occurred, predictably on a Friday. Traditionally, Friday afternoon tends to be when one releases news that one hopes will never be heard. The FDA’s (in)action was all too predictable. No vote on further suspension of the vaccines was taken. Although the panel did say that further long-range studies were advisable, and that parents should be informed that the errant viruses were found in the vaccines (and, of course, Friday afternoon is the ideal time to disseminate that thought, isn’t it?), the overall impression is that nobody on the panel thought there was any immediate concern.

One of the FDA panel members, Dr. Harry Greenburg, was quoted as saying: “The benefits (of the vaccine) far outweighs the risk.” Apparently there was a script floating around the meeting room, because another panelist, Dr. Melinda Wharton, was quoted as saying, “Based on where we are with current knowledge, to me the known benefits clearly outweigh the risks.”

And that was the theme of the scant attention paid by the media. The benefits outweigh the risks. Remain calm; all is well. That theme was based on two elements: the vaccines are effective, and there is a low risk of infection.

Despite lots of chatter in the media that the Rotavirus vaccines have been proven effective in preventing the disease, some studies presented to a recent WHO meeting, suggest that the reported efficacy rates in specific countries vary and depend in large extent to the overall development of the respective areas. In other words, it is difficult to determine whether it’s the vaccines that are preventing Rotavirus, or whether it’s improvements in sanitation, water supplies, and health care.

As to the risk of infection by humans, the FDA panel seems to take as gospel that there is little or no risk because there are no reported incidents of humans contracting PCV-1 or PCV-2 by ordinary contact with infected swine.

Apparently pigs are quite choosy about what infections they will transmit to humans.

Do the FDA panel members not appreciate that there might be a very real difference in transmission by external contact and by internal exposure to DNA? And even if the panel members base their lack of concern on the fact that no vaccinated children have been reported as having the same symptoms as pigs display, the assumption seems to be that clinical manifestations by one species, with no real means of communicating “where it hurts,” would be identical to the clinical picture in a very different species.

Autistic kids ⎯ at least those from families practicing biomedical interventions ⎯ tend to be exhaustively tested. Anecdotally, I am aware of numerous children on the spectrum who have been found to be carrying exotic diseases normally found only in primates, swine, and other non-human critters. I am certainly not proclaiming that those diseases, which are likely contracted through routine vaccines, contribute to the triggering of autistic symptoms. Nor do I know whether there is any harm at all. And that’s the point. We really don’t know. Nobody has been concerned enough to fund appropriate studies.

Maintaining a presumption of safety in the face of legitimate concerns does not serve our children’s interest. It serves only the profits of vaccine manufacturers and the eroding confidence in the sacred cow of public health: the vaccine schedule.

No, all is not well. But the response by the CDC, AAP, FDA, and the rest of the alphabet soup that delivers our health care, is that we should grit our teeth and say: “Thank you sir, may my child have another.”

WHY RALLY?

2010-05-07T22:17:00.002-05:00

Last week I blogged about the American Rally for Personal Rights, to be held in Chicago’s Grant Park on May 26, 2010. I thought I might say a little more about our personal commitment to this event and this cause.

Questioning our country’s regulation of vaccine safety could not be more timely. Every day we hear about more and more extraneous viruses being found in vaccines. A May 7th hearing by a FDA committee looked at such problems in the RotaRix vaccine, and it was acknowledged that there may be far more such viruses than have been identified. That meeting came just one day after the announcement that the competing RotaTeq vaccine developed by Paul “10,000 in a day” Offitt contained PCV1 and PCV2 virus DNA fragments. That’s right; kindly Doc O has been injecting our kids with a pig virus, with unknown effects on humans.

Just seven weeks before that news came out, the FDA announced that there was no such contamination in the RotaTeq. I wonder who at the FDA will get the same treatment afforded to Julie Gerberding, the former head of the CDC who is now the president of Merck’s vaccine division, the same company that manufactures and sells ⎯ you guessed it ⎯ RotaTeq.

Safety concerns are routinely swept under the rug, which should surprise no one considering the cozy relationship and revolving door between the industry and the agencies that are supposed to regulate it.

It makes us mad that science has been perverted into a vehicle to make huge profits with no concern for the safety of the consumer. And it makes us mad that our government aids and abets that process.

My wife has spent her professional life working in hospitals, and has seen an explosion of chronic disease and autoimmune disorders in recent years. All of this is happening in younger patients than ever before. That’s on top of the breath-taking rise in developmental disabilities in children. And nobody is asking why.

The causes of all these problems are no doubt complex, and include various environmental exposures and a tainted food supply, but one can’t help but observe that the rise in these problems has occurred at the same time our vaccine schedule has increased. Unfortunately, it took something happening to our family to open our eyes.

A few hours after he was born, our son’s pediatrician injected him with a vaccine for Hepatitis B, which contained thimerosal. Our son’s speech developed slower than normal, but he was otherwise a bright and engaging child. Like all good parents, we continued to let our child receive more vaccinations whenever our pediatrician said he was supposed to get them. What else were we supposed to do?

When he was a little over four-years-old, the Little Rankster received seven vaccines in one day. Overnight, he stopped making eye contact, all of his developing speech disappeared, and he lost control over his emotions.

Our son was diagnosed as being on the autism spectrum. We were told to put him on Ritalin, get him into a special school, and to start searching for an institution that would almost certainly be needed. Instead, we looked for the reasons our son regressed. It was then that we learned of the growing controversy and the possibility that vaccines or their components might play a role in triggering ASD. Our response to all of this was to try undoing some of the damage vaccinations did.

Almost immediately after commencing biomedical interventions, we started seeing remarkable improvements, and we continue to see that. The Little Rankster has progressed far more than multiple “experts” told us he would. He functions quite well in a mainstream academic environment, sings in the school chorus, and this past year was elected by his classmates to serve on the student council. We can’t say he’s completely “cured,” but he’s a lot closer than we were told he could ever be.

Yet the whole time we have followed this path, the mainstream doctors who saw our son told us that everything we were doing was quackery and unproven, because there were no double-blind placebo studies. The fact that our son has progressed remarkably, and is well on the road to a meaningful recovery, has impressed few of those mainstream physicians. Truly, there are none so double blind as those who will not see.

Those same doctors who told us we were following a false path, also told us that vaccines could not have played any role in triggering our son’s ASD. How could they be so sure? Did they make detailed studies of the science themselves? Well no, but they could assure us that public-health officials have studies the problem extensively, and have proved there is no connection. Ah yes, let’s just trust the public-health establishment ⎯ an unholy alliance between government regulators and the institutions they’re supposed to be regulating, and the 14 studies they keep citing to reassure us that our concerns are unfounded.

The problem is that nobody has yet asked the really hard questions. The science is far from settled, and the more the public-health establishment keeps protesting that it is settled, the more we all have to wonder why they aren’t interested in asking those hard questions.

Dr. Bernadine Healy, the former head of the National Institutes of Health, is one of the rare administrators who found a life outside of the industry. She is a vaccine advocate, who nevertheless believes that the issue is far from resolved. Why did she have to wait until after she left the NIH before acknowledging doubt in the safety of vaccines for particular individuals, as opposed to the general population?

The vaccine schedule is the sacred cow of public health. The protectiveness shown by so many comes from two different sources. For one group, it is purely a matter of profit; there’s too much money to be made on vaccines. The profit margin per dose may not be as high as some pharmaceutical products, but then again, there is no other product that is virtually mandatory for every child who will attend public school. The other group of protectors are those who might realize there is some danger, but act on the misguided belief that collateral damage is acceptable for the protection of a larger number of the population.

One-size-fits-all approaches to health care, though, are more than just bad medicine for individual patients; they represent a morally bankrupt policy. No child should be sacrificed for a hypothetical “greater good.”

It is past time for our public health establishment to ask difficult questions about the official vaccination schedule and the harm that might be resulting. Until those questions are asked, the regulators and regulated are not deserving of any credibility. In the meantime, all parents should have the right to make informed medical choices that are right for their particular situations.

The idea of a religious exemption recognized by some states is wrong not just because it encourages even atheist parents to claim religious views. It is wrong because it robs parents of the right to weigh the potential benefits against known risks with regard to each vaccine on the schedule.

As Americans, we deserve the right to make informed decisions regarding each medical procedure our children may undergo. That includes vaccinations. And that’s why we’ll be at the American Rally for Personal Rights. We owe it to our son, and we owe it to the grandchildren we will someday have.

PLEASE COME TO CHICAGO (WE CAN CHANGE THE WORLD)

2010-04-29T11:40:00.002-05:00

It’s been a while since I’ve posted anything. Life has been a little too hectic. That’s what happens when your autistic child recovers to the point that he gets involved in the world around him.

I’ve also been involved in helping with some of the arrangements for an extraordinary event that will take place next month. And I’d like to invite everyone to be a part of it..

It’s called The American Rally for Personal Rights, and it will be held in Chicago’s Grant Park on May 26, 2010. Starting in the late morning, there will be a family gathering, and the formal rally program begins at 3:00 p.m.

The reasons for being there are becoming more apparent every day.

Americans are steadily losing the right to direct the course of their own health care. The “reform” of the health-care system has the potential to strip us of rights to choose particular treatments. Congress is also currently considering measures that threaten to greatly increase the cost of safe alternatives to prescription pharmaceuticals or even take many such supplements off the market altogether (even though the Dietary Supplement Safety Act of 2010 ran into some roadblocks, Senator Henry Waxman is trying to revive the threat by slipping it into a fiscal reform measure

And then there’s the single greatest intrusion into our ability to choose effective health care for our families: the vaccine schedule promulgated by the Centers for Disease Control, the American Academy of Pediatrics, and school districts nationwide.

Why does the overall health of our citizens keep declining as the vaccine schedule expands? Why are we seeing a sharp increase in autism, allergies, and other auto-immune disorders? Why are babies inoculated for Hepatitis B ⎯ a disease spread primarily through unprotected sex and intravenous drug use ⎯ on the first day of their life, before their immune systems are developed? Most importantly, why do we, as citizens of a nation that values freedom, not have the right to determine which vaccines our children receive, and when they will receive them?

The reach into this most basic of personal decisions has an impact on adults as well as children. Throughout the country, health-care workers are forced to submit to vaccinations for influenza. It is not a stretch to imagine that many more of us, including police and teachers will be next.

Billions of dollars were spent on the false swine flu pandemic of 2009. It is now recommended that all Americans over 6 months of age get the flu shot (most available doses contain thimerosal). We‘ve been told that the 2010–2011 flu shot will contain the H1N1 strain, despite several adverse reactions (including development of Guillen-Barre). It’s even being recommended that sixth-grade boys get the HPV vaccine (which was disingenuously justified to the American public as a preventative for cervical cancer). Where will it al end ⎯ with Paul Offit’s dream of 10,000 vaccines?

The American public must take a large and visible stand against further intrusion into our lives.

All of this is being done with copious cover being provided by the mainstream media, whose presentations have, in effect, been bought by powerful interests. Even PBS has not been immune (no pun intended) from the influence of a lot of money. Its recent Frontline program on the vaccine wars perpetuated the falsehood that the controversy is between science on the one side and a bunch of deluded parents on the other. The producers chose not to present anything ⎯ or even mention the existence of ⎯ all of the physicians, scientists, researchers and public-health experts who question the safety of the current vaccine program. Instead we just got the usual suspects (e.g., Paul Offit) offering sound bite after sound bite with no mention of their own vested interests. And how can any unbiased look at the issue discuss the Danish studies without even mentioning the criticisms leveled at the methodology (or lack thereof).

Those of us who will gather in Chicago will, of course, be labeled as “anti-vaccination” activists. I have a lot of problems with semantic oversimplifications in general, and this one in particular. This is not about condemning the concept of vaccination. This is about the right to choose what vaccinations your child should get, and when he/she should get them.

Do not miss this opportunity to join with others who believe that compulsory vaccination cannot be legally and morally justified and that Americans should have the freedom to make personal health care decisions guided by the professionals of our choosing. You can hear what Dateline didn’t tell you.

Whether you attend or not, you can help support the rally (which is an expensive undertaking) by clicking on the “Chip In” widget on the sidebar of this blog. But whether you can donate or not, please participate. Come if you can. If you can’t make the trip, check out the rally’s web site for information on satellite rallies and web access.

As is ever the case with such gatherings, each one of us there will be standing for so many who won’t be able to make it. So please be among us. You’ll be among friends.

He was singing about a different struggle, but Graham Nash’s words from several years ago say it best:

Somehow people must be free, I hope the day comes soon
Won’t you please come to Chicago, show your face
From the bottom of the ocean to the mountains of the moon
Won’t you please come to Chicago, no one else can take your place

We can change the world, rearrange the world
It’s dying ⎯ if you believe in justice
Dying ⎯ if you believe in freedom
Dying ⎯ let a man live his own life
Dying ⎯ rules and regulations, who needs them
Open up the door

THE TRIB RESPONDS

2010-02-24T15:33:00.003-06:00

I seem to have gone back on blogging sabbatical. That probably won’t last much longer. I’ve got a few things on my mind, and some of them will likely lead to more frequent writing on my part.

In the meantime, we finally got a response from the Chicago Tribune to our open letter stating our reasons for canceling our subscription. Frankly, I’m a little surprised we got a detailed response at all. Curiously, although we received it just yesterday, it is essentially the same as a letter received approximately three weeks ago by acquaintances of ours who wrote their own letter referencing ours.

As I put our letter out there for the world to see, it is only fair to acknowledge the response by the Tribune’s Standards Editor in a similar manner. So here it is:

Monday, Feb 22

Dear Mr. and Mrs. Rankin:

I’m responding on behalf of Tony Hunter, who asked me to review your letter. As you note, autism is indeed a very complex and often controversial subject. At every step, the Tribune journalists have been mindful of how sensitive and difficult a topic this is, and how vital it is to address an important public health concern. I’m sorry that you are so disappointed in the articles and have chosen to cancel your subscription.

The reporters and editors decided, early on, that the topic required more depth than a summary of one group says this while another group says that. The Tribune reporting team took months to analyze and seek mote evidence about some of these alternative therapies. The question was not just why or how some treatments work but if they work. Our reporters found, in just one example, that some of the widely touted research papers fail to meet standards of respected medical journals.

There has been varied reaction. Some, like you all [sic], have felt strongly that these articles have unfairly characterized the alternative therapies. But we also hear from parents, scientists and physicians in the autism community who want to know more.

But it’s not a matter of how many people like, or dislike, coverage. Rather, the Tribune is obligated to seek more answers and truth about such issues that affect so many people. You suggest that the Tribune has failed to amplify the seriousness of the situation with these articles. I would differ with you on that point. If anything, the Tribune’s articles will do exactly what you suggest is important: amplify the seriousness.

There will be more stories, to be sure. Treatments will continue to change, too, as researchers continue their work.

Again, I’m sorry that you are so disappointed with the coverage and hope that at some point you will reconsider.

Sincerely,
Margaret Holt

Let me make it clear. Our problem with the Trib’s reporting was not that it was negative, or showed an editorial bias. Rather, it was that they feigned balance and fairness in presenting a biased series of reports. Our complaint is not that the Trib is ignoring the seriousness of the need for effective treatments; it is the fact that they focus on particular treatments without pointing a finger at the equally (and in my estimation, more dangerous) treatments utilized by mainstream providers. And they do so without acknowledging there is a crisis caused by the unprecedented explosion in ASD diagnosis.

The very first amendment to the United States Constitution guarantees the right of a free press. The drafters of the Bill of Rights understood that a free society needs the healthy and unfettered exchange of ideas and principles. The media therefore has the right to maintain its own editorial bias. A corresponding right vests in the people to ignore a media outlet and call it to task if the editorial bias hinders, rather than aids that healthy and unfettered exchange.

Writers and editors of newspapers, like the Tribune, are not evil if they slant the news to match an honestly held belief. But they have a responsibility to acknowledge (if only to themselves) their bias, and to avoid deception in presenting what they present as “accurate.”

Moreover, as citizens, if not as journalists, they also had a responsibility to acknowledge that there is a growing public-health crisis. The Tribune failed in its responsibilities.

I’m not sure what efforts the reporters went to when they “took months to analyze and seek more evidence.” The articles read much like the standard talking points we so often hear, mostly prepared by interested parties who have never raised or treated an autistic child. Clearly, however, the reporters chose to ignore the thousands of “anecdotes” showing improvement in our children. Is it just a coincidence that the “evidence” the Trib chose to highlight serves the interest of an industry that delivers a substantial amount of advertising revenue?

The one point on which Ms. Holt and I agree is that “[t]reatments will continue to change . . . as researchers continue their work.” Unfortunately, improvements in treatments will not change fast enough for many of us, given the public persecution of scientist and practitioners who are seeking answers. That persecution is fueled primarily by the mainstream press, which is more interested in sensationalism and revenue streams than it is in accuracy.

Okay, Ms. Holt, we’ve reconsidered. The Chicago Tribune, in my estimation, still lacks integrity and credibility. We will continue to get our news elsewhere.

A THREAT TO JUSTICE EVERYWHERE

2010-01-28T15:06:00.002-06:00

During the struggle to try and secure civil rights for all Americans in the sixties, Dr. Martin Luther King, Jr. found himself incarcerated in Birmingham, Alabama. His time in jail was put to good use, as he wrote a letter to a group of clergymen who, although sympathetic to Dr. King’s cause, were critical of the Birmingham demonstrations as being too confrontational. In other words, Dr. King was rocking the boat.

The letter Dr. King wrote from the jail, in my opinion, is one of the greatest pieces of prose in the English language, a call for all to do what is right. The whole letter is summed up in its most famous sentence:

Injustice anywhere is a threat to justice everywhere.

Those were the first words that came to me when I heard of the decision by the GMC in the ethics case against Andrew Wakefield and his colleagues, John Walker-Smith and Simon Murch.

Their wrong was simply to tell the truth. There were others who joined in the Lancet case study that found a potential connection between the MMR vaccine and autistic enterocolitis. The others were pressured to repudiate the article – or to say it more accurately, to repudiate a finding that was not made by the study. Dr. Wakefield and his colleagues never stated that the vaccine caused autism, but merely that there was a need for further study.

Even the recommendation for further study was a threat to a lot of powerful influences in the public health establishment and its allies in the pharmaceutical industry. And the Wakefield findings have been replicated on more than one occasion, so merely throwing competing studies out there would not kill the controversy.

Enter Brian Deer, a British “journalist” looking to make a bigger name for himself. By mangling together two different studies and reports Dr. Wakefield participated in, Deer presented ethics charges that objectively do not hold water. But the charges were not to be heard objectively.

For an excellent and dispassionate look at the charges and their fallacy, see the article by William Long (originally printed in The Autism File), which can be found here in pdf format.

Now, after years of proceedings, wasting God-knows-how-much money and resources, the General Medical Council found that there were violations. As a result, Dr. Wakefield and his colleagues will likely lose their professional licenses. Ironically, the evidence presented to the GMC against the three was primarily testimony by witnesses with far more-extensive conflicts of interest than those ascribed to Dr. Wakefield (see here).

Of course, there will be many who will say that this outcome proves the fallacy of the case study’s conclusions. It is a further piece of irony, that those who will most loudly deliver that collateral attack include many of the same people who would defend epidemiological studies performed by those with fatal conflicts of interest.

I listened to live coverage of the verdict on the Linderman Live program on Autism One Radio. I heard that Brian Deer made a statement that, “it’s a great day for children, a great day for medicine, and – dare I say – a great day for journalism.”

No Mr. Deer, in fact it is a tragic day for children, a tragic day for medicine and science, and – dare I say – a tragic day for journalism. We’ve already seen over on this side of the pond the kind of yellow journalism practiced by Deer. The once mighty Chicago Tribune has sold itself to the powerful interests who are more interested in the status quo than they are the truth.

Even if we were to take the provincial position that today’s announcement was an injustice only in the UK, there is a serious threat to justice here in the US. Without doubt, there will be moves made against many of the physicians and scientists who are helping our children. And the truth may not be a strong enough defense for them.

The truth will only be strong enough to defend us all when the emerging science progresses to the irrefutable point, at which time the Paul Offits, Julie Gerberdings, and Brian Deers of the world will not be able to deny what has happened to our children. Unfortunately, the research needed to bring out that truth is not being funded.

The attacks on Dr. Wakefield and his colleagues are also attacks on us and on our children. We stand with them.

HERE I GO, RAILING AGAIN

2010-01-26T00:00:00.003-06:00

Fairly soon after our open letter to the Chicago Tribune (see last entry) was reposted at Age of Autism, some fellow by the name of Prescott Carlson posted a criticism at Chicagoist. That entry, entitled Parents of Autistic Boy Rail on Trib for “Editorial Bias,” referred to the letter as a “lengthy screed.”

Reading through Mr. Carlson’s brief post gave me the distinct impression that somehow the meaning of our letter had gotten lost, and that left me in a bit of a quandary. I felt an explanation was in order (even though the letter itself was already pretty clear), but a real explanation needs a little length, something which Mr. Carlson apparently disapproves of. So it would be rude to post a lengthy explanation as a comment at the Chicagoist, but here, on my own blog, I can be as long-winded as I please.

Length of prose is always a delicate matter of balance. Too short, and the message might not be clear. Too long, and some readers might focus on individual trees rather than the forest. Such is the case here. Mr. Carlson stated that we:

accuse Tsouderos of “[straying] from the principles of balance, fairness, and the truth” in her articles, and even hinted that the Trib's deciding to focus on the subject at all was misguided, saying:
The articles by Ms. Tsouderos were given front-page treatment, including the latest, which came at a time when every other organ of the press was focused squarely on the recent tragedy in Haiti.

We did not attempt to imply that the Tribune’s exploration of the issue was “misguided.” Had that sentence been read in the context of the complete paragraph from which it was cherry picked, the point becomes obvious. Believing that the OSR story (or non-story depending on one’s opinion) was more important than the tragedy in Haiti is a bit ridiculous, especially when the same paper has yet to devote any appreciable space anywhere in the front section to the latest CDC numbers released in December.

The Tribune is unwilling to acknowledge there is a public health crisis, but they are sure willing to say they know how not to treat the non-crisis. That is not just an editorial bias; it is nonsensical.

Moreover, the Tribune reporters have gone about their work in an intellectually dishonest manner. I spoke to one parent who Ms. Tsouderos interviewed for one of her early stories; that parent felt she had been lied to by a reporter who kept leading her into statements that did not reflect what was truly intended.

And it’s not just parents Ms. Tsouderos misquotes. As was noted in our letter, a distinguished physician and scientist at Harvard, Dr. Martha Herbert, complained about being quoted out of context, resulting a misleading expression of Dr. Herbert's opinions. But accurately quoting Dr. Herbert or any of the other qualified doctors and scientists who are looking into potential treatments does not serve the Tribune’s bias. It’s far easier for them to paint a picture of Dr. Boyd Haley as a snake-oil salesman than it is to acknowledge his extensive qualifications and his solid research.

I generally try to steer clear of discussing specific interventions and protocols we use. I will say that, based on what we have heard and seen, the Lupron protocol and OSR #1 (both of which were the subjects of Tribune smear pieces) may be appropriate treatments in particular circumstances. Each autistic child presents a unique clinical picture. What is right for one is not necessarily right for another. Whether a particular intervention is appropriate for an individual depends on the nature of the problems underlying the autistic symptoms, and should be chosen after a careful weighing of potential benefits against risks.

The Tribune, however, is not interested in the successes of our families, as they do not sell papers as well as sensationalism does. Nor is Ms. Tsouderos interested in the successes parents have had. For it’s far easier to get promoted to science reporter from the entertainment beat if you write a sensational exposé rather than a human interest story about families helping their kids.

It’s all a matter of proportionality. One of the comments left at the Chicagoist illustrates the lack of recognition that the Tribune’s articles are far too choosy in picking their targets. Somebody using the handle “Ward Up,” wrote:

The Rankins are frustrated and that is understandable. However, their frustration should not trump scientific evaluation.
If an autism drug has not been proven in a randomized, prospective trial, then that drug cannot be recommended by the Tribune or by anyone, for that matter. Doing so would be a disservice to families of children with autism.
The Tribune deserves praise for its articles on this subject. We need more light shined on these therapies to separate effective medicine from snake oil.

You know what’s frustrating, Ward? I’m frustrated that the same people – like Ms. Tsouderos, Mr. Carlson, and well … you – are so willing to decry so-called “alternative” therapies, but very few of you seem to have a problem with the all-too-common pediatric practice of prescribing Ritalin, Risperdol or even Prozac to autistic children under the age of five. Those are off-label uses of very dangerous controlled substances, and yet the FDA and AAP seem to condone it. Where is your outrage about that? Where is the Tribune’s exposé on that?

There’s nothing at all wrong about reporting on a controversial issue and newspapers are allowed to have an editorial bias. That all adds to a healthy debate of issues, which was certainly contemplated by the drafters of the First Amendment. Part of the bargain, however, is that the issue needs to be presented fairly, accurately, and completely. The Tribune reneged on its part of the compact between itself and its readers, and that was our complaint.

AN OPEN LETTER TO THE TRIB

2010-01-21T18:27:00.003-06:00

January 21, 2010

Mr. Tony Hunter
President, Publisher
Chicago Tribune Company
435 North Michigan Avenue
Chicago, IL 60611

Dear Mr. Hunter:

A few days ago, we called the circulation department to cancel our subscription to The Chicago Tribune. We thought it appropriate to write and explain why we thought this necessary. Put briefly, the Tribune’s continuing written assault on the autism community and those who serve us has caused us to lose the high degree of respect we once held for your newspaper. Specifically, articles written (or co-written) by Trine Tsouderos have, in our opinion, strayed from the principles of balance, fairness, and the truth.

By way of background explanation, our family is one of the hundreds of thousands in this country who have felt the impact of the autism epidemic. We are part of a growing number of people who have chosen not to meekly embrace our son’s disability, but rather to seek biological explanations for the clinical manifestations that led to the diagnosis and to utilize the best medical treatments to treat the underlying physical conditions. We are not alone on this journey, and like most of the parents who embark on this course, we are well-educated. Both of us have professional backgrounds (including a background in mainstream medicine).

Each case of autistic spectrum disorder is unique from a standpoint of both cause and treatment. We have utilized some so-called “alternative” therapies together with more traditional treatments. The continued improvement of our son’s clinical manifestations has been nothing short of remarkable. Our story is not unique; there are many of us who have seen first-hand the success that can result from treating underlying physical conditions instead of just the symptoms by which autism traditionally has been defined.

Many in our community have attempted to speak to Ms. Tsouderos about the healing we have seen in our children, but she has shown little interest in exploring our perspectives. Instead, she chooses to rely on the same talking points we have so often heard from groups and individuals with vested interests, while ignoring scientific studies providing a basis for the treatments.. On those occasions when she does quote someone – whether a parent, a practitioner or a scientist – that quote is invariably taken out of context and is either inaccurate or incomplete. For example, an article this past November, mined several quotes from Dr. Martha Herbert, a distinguished neurologist at Harvard. This was Dr. Herbert’s response to the Tribune, which your paper chose to ignore:

I did a rather long interview with the Tribune to explain my thoughts on chelation and additional approaches to solving the health issues connected to autism. The only consequence of my interview is that you use a solitary quote to make me sound contentious and defensive. Is there a reason you chose not to use something I said that would actually illuminate the discussion surrounding chelation and other medical treatments for medical compromises that may exist in these children?

CHRISTMAS 2009

2009-12-24T18:37:00.001-06:00

It’s been kind of a tough year for the Rankins in many ways. Some not-so-nice things happened. But still a lot of nice things also happened, and we manage to count a lot of blessings at the end of the year. First among those blessings is the continuing miracle of our son’s progress. We think of where we were just a few short years ago, and try to compare that to where we are today; it’s impossible because there is no comparison.

As it always was, and always shall be, this is the season of hope. Despite all of the not-so-nice things that have befallen us, we are hopeful for the days and years to come. My children give me that hope. Christmas ⎯ and all that it is and all that it represents ⎯ gives me that hope.

May you have a blessed Christmas and a hopeful New Year.

And so, as Tiny Tim observed, God bless Us, Every One!

P.S. Speaking of blessings and hope, GEAUX SAINTS!!!!

PHARMA HO-HO-HO

2009-12-23T17:29:00.003-06:00

I decided to break out of my current blogging sabbatical to briefly comment on the Christmas present Julie Gerberding just got. For those who have not yet heard, the former head of the Centers for Disease Control ¬⎯ the federal agency responsible for formulating our government’s vaccination policies ⎯ has just been named to be the new president of Merck Vaccine.

She won’t be able to officially take the job until January 25, 2010. You see, there’s this pesky law that prevents government officials from taking jobs that might otherwise appear to be a conflict of interest for a period of one year after leaving the government.

Maybe it’s just me, but it seems a little contradictory of at least the spirit, and perhaps the letter of the law that this deal was cut well within the one-year period. That both Gerberding and Merck feel comfortable making this announcement less than a year after her leaving the government shows just how toothless the one-year requirement is. The waiting period should be raised to at least five years ⎯ and maybe more ⎯ if it is to mean anything. And discussions of a job should not commence until that period has completely elapsed.

Of course, even a requirement that employment negotiations should await the end of the waiting period would have been much of a safeguard in this “wink-wink/nudge-nudge” world. Rather than expound on that point, I simply refer you over to Ginger’s blog, where she lays out the coziness that has always existed between these parties. When Gerberding first stepped down from the CDC last January, Ginger correctly predicted the outcome, with the only question being whether the final resting place would be Lily or Merck.

The predictability of this appointment does not make it any less shameful. If those holding positions of public trust in our government felt any shame at all, there would be hearings into this appointment to determine all of the circumstances surrounding the negotiations for the position in light of Dr. Gerberding’s actions (or lack thereof) at the CDC. I won’t hold my breath waiting for those hearings, though. If those holding positions of public trust in our government felt any shame at all, the crisis that is the ASD epidemic would not likely be nearly as bad as it is.

HOPE

2009-10-21T14:22:00.001-05:00

Oh my, Wired magazine has entered the fray with Amy Wallace’s unabashed love letter to Paul Offit. Whenever I see Doc O’s name pop up, I have an almost Pavolovian need to respond. In this case, though, nothing new was said. Besides, J.B Handley has already done a fine job, over at Age of Autism, of discussing this puff piece.

Although I see no need to directly address Ms. Wallace’s screed, I’d like to discuss the recurring theme we keep seeing from those who deny the very possibility that we are in the midst of an epidemic, and the related possibility that a program intended to protect our children might have played a major causative role in the creation of the epidemic.

Ms. Wallace writes that, “[w]hen a child is ill, parents will do anything to make it right.” She makes that sound like a bad thing: that parents would want to go to whatever lengths are necessary to heal a sick or injured child. Ms. Wallace apparently attended the Autism One Conference last May, but it’s difficult to know if she actually listened to much that was said. It’s not just that she seems to think ⎯ quite incorrectly ⎯ that the whole conference was about blaming vaccines, but she belittles the various advances in biomedical treatments that were discussed there.

Again saying it as if it was something bad, Ms. Wallace recounts her Autism One experience: “To a one, the speakers told parents not to despair.” Are we supposed to go through life without hope that our children can get better? Apparently that would be preferable to living with the hope that we are getting. Ms. Wallace makes sure that her new best friend’s views are stated: “Offit calls this stuff, much of which is unproven, ineffectual, or downright dangerous, “a cottage industry of false hope.”

I can only speak for my family, but we have chosen to live a life of hope, and that hope ⎯ and a lot of hard work ⎯ has brought rewards. I generally avoid writing a lot about our son on this blog. It’s mostly a matter of his privacy, and my belief that some day he will make his own choice as to what he wants to say. But I need to bend that self-imposed rule a little to talk about hope, and how sometimes hope and reality are not that far apart.

About five years ago, a self-styled “developmental pediatrician” told us that the Little Rankster was definitely autistic, and we needed to do three things: 1) get him on Ritalin; 2) put him in a special school; and 3) start looking into a residential placement he would probably need in a few years. He explained that the best we could expect from pharmaceuticals and special schools was a delay in the inevitable.

None of those recommendations were followed. We chose, instead, to use “unproven” biomedical treatments, which we mixed in with speech therapy and a little bit (but only a little bit) of traditional behavioral therapies. We made those choices, even when a multi-disciplinary team, at the end of a very expensive evaluation, gave us advice that was similar to the pediatrician’s, albeit a little less gloomy. It didn’t seem to bother any of these professionals that the one thing they all advised us to try, Ritalin, was “unproven” as to either efficacy or safety for children of our son’s age.

We chose hope for our son. It has not been easy. There are no magic bullets. Because the medical community serving our kids is still learning about how underlying conditions result in the clinical manifestations of autism, there have been a lot of changes in what we’ve done. Not everything we’ve tried has worked, but there have been a lot of successes. The process has required constant research and re-examination, mostly by my wife. Before trying anything, we look at what testing and clinical signs are pointing to, and whether there is a rational basis for what we intend to try. Most important, we weigh the potential risk against the potential benefits, and err on the side of safety.

Skeptics will say that “all children make progress,” and we can’t prove that any progress our son has made can be tied to the interventions we have used. Frankly, I don’t care about proving anything. The timing and the nature of the improvements we have seen tell us when we are seeing results.

Through the years, we have seen those results. Our son remained in public school in “regular” classrooms, first in Louisiana and then here in the midwest after we moved up here a few years ago. At first, he needed a lot of help ⎯ the kind that the schools are required to provide. But as his physical condition improved through the biomedical interventions we used, so did his school performance improve. He’s still under an IEP, but he hasn’t needed an aide for the last year-and-a-half.

The Little Rankster has steadily showed more interest in the world around him. This year, he’s in the school chorus. Let me restate that a different way. The boy who could not speak until a couple of years ago, is now singing, loudly, clearly, and happily. And then last week, something happened that we would not have believed possible not so long ago. Our son’s classmates elected him to the school’s Student Council. He showed an interest in running (a miracle in itself); his teacher felt he was worthy of nomination, he gave a short speech, and the other students voted for him.

The Church speaks of “outward and visible signs of an inward and spiritual grace.” I don’t intend to compare what we do to religion or faith; it is science. But what the Rankin family and our friends see on a constant basis can be called outward and visible signs of an inward healing. We aren’t ready to declare victory and proclaim that our son is completely “recovered” . . . not yet. But we’re getting closer to that every day. And throughout our family’s journey, the outward and visible signs have fueled hope.

Our hope is real. And hope is a good thing.

SHOULD WE BE FAST-TRACKING THE H1N1 VACCINE?

2009-08-12T20:25:00.002-05:00

In the vaccine debates, it seems that the most enlightened and enlightening reports in the mainstream media come from CBS News. And most of those reports come from Sharyl Attkisson. Here Ms. Attkisson moderates a civilized discussion of the safety issues surrounding the coming swine flu vaccine with Dr. Jennifer Ashton and Barbara Loe Fisher, Director of the National Vaccine Information Center. Neither of the panelists took an absolutist position. One must wonder if the discussion would have been so rational and thought-provoking if the NIH official, Dr. Anthony Fauci, hadn't backed out after initially agreeing to participate. Would he have acknowledged the relatively "mild" nature of the H1N1 virus as did Dr. Ashton? Would he have advocated a risk-benefit analysis as did Dr. Ashton?

Watch CBS Videos Online

SELF-ABSORPTION

2009-07-28T21:24:00.000-05:00

It’s times like these that I always default to the plaintive cry of Rodney King: “Can we all just get along?”

We are not a rich family. When I was actively engaged in the practice of law, I was very good, but I wasn’t one of those guys who made piles of money. The kind of practice I had and the region I in which I practiced were not conducive to wealth-building. And of course, a child on the spectrum has a tendency to drain economic resources, even in a family with two working professionals.

When we uprooted our family and moved to build a better life for the Little Rankster, it was with the knowledge that life was not suddenly going to be easy. The disparity in the cost of living meant going from a 3200-square-foot house on a quarter-acre lot to a 2000-square-foot townhome.

It’s a very nice townhome, but a townhome nonetheless. That means we have all the joys of having our next-door neighbor being just a common wall away. It wasn’t too bad for a year or so. The neighbors kept pretty much to themselves, and didn’t seem to require an explanation of the noises that very occasionally emanated from our side of the wall. They had a baby of their own, and even having a typical child these days exposes one somewhat to the fact that there are a lot of kids out here on the spectrum. Then they sold their unit.

Our new neighbor was a young lady, in her early-to-mid twenties. She seemed pleasant enough, and was terribly embarrassed when her little dog kept squeezing through the fence to come into our courtyard (I kept assuring her it was perfectly okay).

We first became aware of a problem in early April, when we got a phone message from the property manager who said she had received “several complaints and numerous e-mails regarding the noise” coming from our unit. She specifically mentioned our dog barking at an early hour, and “wild banging on the walls.” She then threatened to take the matter to “the Board” if we didn’t eliminate the problem.

We were taken aback by the fact that our neighbor (we are in an end unit with just one common wall, so there could be no doubt who the complaining individual was) would not simply approach us and discuss the matter as a neighbor. Instead, she took her complaint to the property manager, who compounded the problem by letting “several complaints” amass before deciding to tell us.

The dog thing was easily taken care of. My wife and I both need to leave early for work, and we would occasionally let our dog out in the front courtyard to answer nature’s call before we would leave him alone. Captain Percival would signal the need to come back in with a bark. In fact, there are other unit owners in the area who have their dogs out at that time of the morning, and there is often barking coming from across the street, but we assumed the objectionable noise came from our dog. So we no longer let the dog out in the front during those hours, and I started getting up even earlier to take him out for a walk. In other words, we considered that complaint to have a reasonable basis, and we acted accordingly as neighbors should.

The wall banging was a little more difficult to deal with. We assumed, though, that what our neighbor was hearing was the Little Rankster occasionally dealing with his sensory issues by banging on the tub during bath time, or very occasionally on his headboard when he was frustrated. Those were the loudest things we could figure out that could be coming from our unit. But he never, never banged on the wall.

Armed with our assumptions ⎯ and they were only assumptions since the property manager wouldn’t return our calls and didn’t provide (and still hasn’t provided) copies of the complaints ⎯ we wrote to management explaining the situation, and reminded her and the Board that the Fair Housing Act really took the situation out of their hands. It was really a matter to be discussed between neighbors, and we expressed our willingness to discuss the matter with out neighbor.

And indeed our neighbor did come to discuss it. Unfortunately, she chose a time in the morning when my wife was loading up the Little Rankster in the car to get him to before-school care and herself to work (I had long since left for work). My wife let the young lady know that it was not a good time to discuss the matter and suggested that she come back later. Our neighbor stormed off. At a later date, after not hearing anything further, my wife tried to approach the neighbor, and was met with what can only be described as overt hostility.

We heard nothing further until a couple of weeks ago, when we got a certified letter from an attorney claiming to represent our neighbor. I noted that it was the same kind of letter I used to find myself writing for friends and regular clients, albeit not as well written as those I used to write.

Still the letter was interesting. For one thing, counsel indicated that his client had begun complaining in the Fall of 2008. That meant that several months had gone by before we were made aware of the situation. Had our neighbor taken a chance on actually speaking to us directly when she first felt aggrieved, could we have talked it out? I’d like to think that would be the case for most people, but I’m not so sure that would be the case here.

You see, the letter referenced having been informed that one of our family members had a medical problem, which was leading to the noise. She could only have heard that from the property manager: the same property manager we instructed to keep our son’s condition confidential, so that we could control the manner in which his ASD was explained. We’ve learned the hard way that leaving the explanations up to other people tends to result in the wrong message. And indeed, in this case the manager’s breach of our confidentiality create a misapprehension that no amount of explanation could cure.

There were little clues in the lawyer’s letter that it was the ASD that was causing more of a problem than the noise itself. Although counsel said he was “sensitive” to our son’s condition, he alleged that his client’s “own health has been detrimentally affected by the interruption of her sleep and by the stress caused by this constant pounding.” Moreover, it seems our neighbor’s property values are also affected because “no one who would be aware of this problem would want to buy her unit, and, given the severity of this on-going problem, the seller would be legally required to disclose it.”

If the problem is excess noise coming through the walls, a seller might be required to disclose a problem with construction, but to state that living next door to an autistic child decreases one’s property value is absurd . . . and more than a little prejudicial.

As it turns out, we no longer think our son is the source of the alleged noise problem. That was short-sightedness on our part, caused primarily because we have never been given the opportunity to learn any specifics about the complaints. But the lawyer letter cited an ongoing problem of pounding on the walls: i.e., a problem that was continuing. Again, there has never been any pounding on the walls. More to the point, however, the Little Rankster’s been going through several good months, and hasn’t really been pounding on much of anything for a long time.

After reading the letter from learned counsel, I came to the conclusion that the problem stems primarily from our neighbor’s unrealistic expectations about living in a home with common walls (be it an apartment, a condominium unit, or a townhome). She is likely hearing the same things we hear from her side: people walking on the stairs, washer/dryer activity (in her case, that activity has often been late at night), and dogs barking (our neighbor’s dog is particularly enthusiastic about alerting passers to her presence). None of these things are ⎯ nor could they be ⎯ as disruptive as our neighbor seems to believe.

We could easily voice the same complaints about our neighbor that she has been so forceful in voicing. It is true that there might be more noise of one kind coming from a unit with a child in it, regardless of whether that child is autistic or neurotypical. Our child, on the other hand, has never thrown a loud party into the late hours (as our neighbor did on a recent Saturday), and our child does not leave behind a trail of cigarette butts on the sidewalk (one would think that someone who is in such a delicate state of health might want to refrain from smoking). We never considered complaining about her conduct because we understand the setting we are living in, and we have adjusted our expectations accordingly.

Any question that the problem is our neighbor’s expectations was put to rest about a week after we got her attorney’s letter. I got home from work, and found a message on the machine. That morning, probably no more than five minutes after my wife left for work, the 911 operator called to say that the police were outside and would like a word. My wife called 911 and got the story. Our neighbor had called in around 7:15 am, to report that there was an awful pounding on the walls that wouldn’t stop. By that time, the Little Rankster had been out of the house for at least 15 minutes. The only thing that could have made the noise was the dryer my wife briefly ran to take care of something she need to wear to work.

That’s right, the police were called out because we had the temerity to run the dryer after 7:00 am. The police came, heard nothing and left. Upon getting the whole story, the 911 operator had a pretty good laugh.

There is an obvious irony here. Some people label autistics as being self-absorbed and uncaring. The Little Rankster most certainly does not fit that absurd stereotype. But someone else surely does.

Actually, now that we’ve been up here for a while, we’re starting to think about taking advantage of the low housing prices and look for a real house. The only problem is selling our townhome. Who would want to purchase our unit after we have to disclose what kind of neighbor we have?

HAPPY FATHER’S DAY

2009-06-21T10:36:00.001-05:00

I was lucky to have the father I had. I don’t recall him ever giving me advice on any subject other than fishing (and Lord knows, he knew his stuff about that). But the life lessons I learned from him just by observing how he lived his life (especially how he acted toward other people) were priceless.

Those lessons from my father certainly have helped me to be a better father. The best lesson on fatherhood I got from him was to let my children show me how to be their servant. I’m not talking about being a slave, kowtowing to their every whim. I’m talking about being a servant in the best sense of the word: placing the needs of the children before my own.

I’ve met a lot of dads of special-needs kids over the last few years. Some simply don’t want to deal with the fact that raising their children isn’t easy. Others welcome their children’s disabilities, but primarily because it’s a way for them to be the center of attention themselves by shouting to the world that they are superdads. Those two types are the men who would be less-than-ideal as fathers regardless of their kids’ challenges.

On the other hand, I’ve met a lot of fathers who understand that fatherhood requires sacrifice ⎯ of time, of money, and of ego.

Although the challenges are different with every individual child, good fathering (and mothering) is always a function of sacrifice. Happy Father’s Day to all the servant dads out there.

PEOPLE OF ACTION AND HOPE

2009-05-24T21:07:00.002-05:00

Another Autism One Conference has come and gone. A-1 has become the best of the autism conferences. It covers the biomedical side of things in an inclusive and comprehensive manner, but it also includes so much more to connect attendees to the often-scary world of autism, from political and legal issues to educational strategies. Just as importantly ⎯ maybe more importantly ⎯ the people who come from around the country, and beyond our borders, meet and learn the most important lesson of all. We are not alone.

This year, I volunteered and made fewer of the sessions than I did in the past. (I was under orders to attend the talk my lovely-and-talented wife, Sym Rankin, gave with the also-talented Sonya Hintz, giving advice on getting mainstream physicians to look past the autism and understand the underlying physical problems. They did a great job.) Instead, I filled most of my time manning the registration/information desk, and just talking to people.

I did make a couple of sessions that helped to place a context on where we are in this troubling time. One was Friday evening’s talk by Mark Blaxill, entitled, “Intellectual and Moral Failures in Autism Science.” It was thoughtful, provocative, and perhaps a little controversial. The basic theme was that the autism epidemic demands moral action, and we simply aren’t getting it from the intellectual elite. Rather than open their eyes, most people in the sciences are content to let the elite do their thinking for them; they are caught up in “expert worship.” (As we saw in recent examples of the worst in mainstream “journalism,” the elite have a willing partner in the media: see here and here).

Mr. Blaxill drew parallels ⎯ and he was very careful to note that parallelism is not the equivalent of proportionality, so this is not meant to be an invidious comparison ⎯ between the silence of the “good Germans” in Nazi-controlled Germany and that of scientists who might suspect there is a truth beyond what they are told to believe. There is a moral requirement to bear witness that is simply not being fulfilled, and we all need to hold the world of science accountable.

Mark Blaxill was also part of the other session I want to mention. He, Kim Stagliano, and Dan Olmsted were part of a panel discussion ostensibly about Age of Autism, which has become the daily news organ of record for some if us. And while they did discuss the history and mission of AoA, they decided to focus on the single most important story they have covered (see here and the links therein). To do that, they turned the program over to three members of the Somali community (two from the community in Minnesota, which has been deeply affected by autism, and one from Toronto). They spoke of the incredible outbreak of ASD within their ethnic group, a people that had no need for the word “autism” in their language until they came to America. What they experienced here told them that the regression of their children into ASD was a result of vaccinations being forced upon them with little explanation and no real justification.

At first, I shared the Somalis’ anger. I felt a twinge of shame that my country, with its tradition of doing right by those who seek its shelter, could first force these newest Americans into a vaccination program that triggered a disease they had no prior knowledge of, and then the same country ignored their plight. But their story did not end with anger. They took action. They organized and found ways to get people to listen to them. And they have hope.

Action and hope: that pretty much sums up my 2009 Autism One experience. I was expecting to see a smaller-than-average turnout, considering the economy and the media attacks on our opinions. I was surprised to see that attendance was actually quite heavy. Many old friends were unable to make it, but there were lots of new friends to be made. And they weren’t shy about asking the veterans for help. I referred several people to the TACA moms, who took a lot of time to give fantastic advice (you ladies are the absolute best, and a special shout-out to Linda and Christina).

The newbies there helped to energize me for the continuing fight. They are already taking action to help their children. And they are filled with hope, something I share with them.

Action is required, and the hope is real.

IT'S THAT TIME OF YEAR

2009-05-20T21:49:00.001-05:00

I'm looking forward to seeing a lot of friends, both old ones and new ones, at Autism One. If you spot me, make sure to say "Hi."

WHY DO WE STILL SEE THIS

2009-05-17T08:59:00.004-05:00

Most of us are tired of the whole concept of "autism awareness." Shouldn't the world be aware enough already? But every now and then I see something that tells me the job is not done yet.

There was apparently a recent letter to The Arizona Republic, in which some cranky individual decried the fact that disruptive children are seen in public. In response, Mr. David Cuddeby wrote the following response (go here to see the original post and comments):

The behavior of some children in the store where letter writer Cherie Anderson works describes the way my 3-year-old grandson occasionally acts ("Stores no place for unruly children," Letters, Friday). I guess we could get him a little T-shirt that says, "This is how autism looks."

Perhaps we will take her advice and just leave him at home. As she points out, it is our problem, not hers.

The sarcasm in Mr. Cuddeby's last sentence was lost on the folks around there. Here's one of the comments left at the on-line posting of the letter:

Mr. Cuddeby, you're quite correct in you last statement in your letter; it IS your problem, not anyone else's.

Is your child better served, during those periods of time his behavior becomes uncontrollable, in a public place, where he can - and does - become an object of ridicule by others unaware of his health condition or with his other parent, at home, in an environment he knows to be safe for him?

I want to be clear - I am not saying you should lock your child away at home. I'm suggesting that you, as a responsible parent, need to determine what lengths outside activity has a beneficial effect on your autistic child, and have an option available for those periods of time you child enters one of his autistic fugue states.

Actually, that was one of the nicer comments. Here's one that seem to lay the real feelings of some folks in Arizona on the line:

Okay, let's give a little of this unruly behavior to autistic children who represent 1 out of 150 kids. Now please explain away the other 149 brats screaming at the top of their lungs. God, we have become such wimps and seek to victimize every thing we do. Nipple sucking liberals always have a "reason" for why criminals committ [sic] crimes and how it;s [sic] not their fault and why kids act like brats. Sad.

The general tone of the more civilized comments was that parents of autistic children should not subject their kids to more than they can handle. Loosely translated, that means, "please don't bring your children anywhere where we might be reminded that this autism thing exists."

So despite our desire to move on, we still need autism awareness. We need for the world to be aware that this is not just our problem; it is everyone's. If we don't get help in determining cause and treatments, and if we don't get help in caring for our kids now, then the rest of society will become all-too-aware after we're gone that they have a problem.

Go here to read Mr. Cuddeby's letter and all the comments. Feel free to add to the comments yourselves. Spread a little awareness.

POSTSCRIPT: I went back and did a little editing on this post, realizing that was being a little too broad in my condemnation of folks in Arizona. There's too many good people there, and what we see in these comments may better be characterized as merely being an open and obvious example of attitudes we encounter too often everywhere.

HAPPY MOTHER’S DAY

2009-05-09T18:37:00.002-05:00

The Autism File, in both its print and on-line incarnations, has paid tribute to autism mothers everywhere. It’s oh-so-timely, and oh-so-deserved.

I am in constant awe of the mothers of special needs kids that I have met over the last several years. They are relentless. They spend endless hours searching for answers, and wind up becoming the real experts. I’ve seen some of them, with little or no formal medical training, not only become conversant in technical jargon, but they have learned the fine points of clinical application.

Special needs mothers do whatever it takes to stand up for their kids. They educate themselves on their children’s rights, and they become tireless advocates.

I have the privilege of sharing my life with such a woman. There is not a day that passes without my looking at her and marveling that God could create such a person.

It’s not entirely inaccurate to say that what motivates special-needs mothers is the same thing that motivates any mother: an endless supply of unconditional love for their children. That’s the saintly quality of motherhood. What sets apart “special needs” mothers is the opportunity to show an extra measure of maternal devotion on a daily basis.

With that in mind, I’d like to re-post a portion of something I first wrote at the end of October, 2005. I posted it for All Saints Day of that year [the complete post is here], because I wanted to explain to the world why it was that I claimed sainthood for my own mother.

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.”

It doesn’t matter whether there is a label; every child is a “special needs” child. Each is unique. Each is deserving of the saintly love of a great mother.

Happy Mother’s Day to all the wonderful women who give that kind of love.

ADDENDUM: For more on the saintly quality of motherhood, go here to Ginger's blog.

FOLLOWING THE MONEY

2009-05-03T14:27:00.004-05:00

I’m really not blindly anti-vaccine, but there can be too much of a good thing. Over the last couple of decades, as we’ve seen the vaccine schedule expanded to include more and more shots ⎯ and earlier and earlier sat that ⎯ we’ve seen a steady decline in overall health. (Okay, I don’t really have any stats to back that up; I’m relying mostly on the observations of heath-care professionals I know who tell me they are seeing more and more autoimmune problems in younger and younger people.) Isn’t that the opposite of what we should be seeing?

The amazing expansion of the vaccine schedule runs counter to the constant pronouncements from the defenders of the vaccine program (who have become known as “the Offiteers”) that pharmaceutical companies really don’t make much in the way of profits from vaccines. Why would the companies go to great lengths to develop new vaccines and get formal approval for them? How can they afford to pay such tremendous royalties to patent holders if they aren’t making money.

Barbara Loe Fisher (founder of the National Vaccine Information Center) addressed those questions in a recent post on her blog. The post, “Politics, Profits & Pandemic Fear Mongering,” could not be more timely. With everyone going into panic mode over the outbreak of swine flu, thee is a legitimate fear that our government might repeat the mistakes of the last swine flu panic back in the seventies. The feared pandemic never appeared, and the emergency vaccination program was nothing short of disastrous in terms of the number of deaths and diagnosed cases of Guillen-Barre.

Who’s in charge of our public health policy? Who influences how that policy is depicted in the mainstream media? All one has to do is follow the money.

TALKIN’ SENSE IN NEW BRUNSWICK

2009-04-21T22:42:00.001-05:00

When I first saw that Alison Singer, Karen London and Paul Offit had joined forces to found the inaptly named Autism Science Foundation, my first thought was “birds of a feather flock together.”

The reaction of Canadian blogger, Harold Doherty, had a somewhat less juvenile take on it. He posted his thoughts on the obvious truth that there is more politics than science behind this new organization. (Read it here.)

What is most striking about ASF is that its statement that vaccines are not involved in autism takes up m ore space in its stated goals than stating just what it is they do intend to research. At a time when more and more voices in medicine and science are agreeing that the vaccine-autism issue is not dead, ASF is insisting that there is no issue. As Harold writes:

Given the existence of legitimate questions concerning possible vaccine autism questions it seems odd for an organization founded to provide quality scientific research to make such a dogmatic statement conclusively ruling out those very questions. It also seems odd that the founders of this organization believe that public confidence in the vaccine program will be maintained by shutting the door on areas of research in which substantial numbers of the population believe are legitimate areas of inquiry - including members of the public like Dr. Bernadine Healy, Dr. Julie Gerberding, Dr. Duane Alexander and Dr. Jon Poling.

If the issue were as dead as the folks at ASF want us to believe, there would be no need for them to talk about how they’re not going to study it; they’d tell us what it is they plan to delve into. Ms. Singer and Dr. Offit are telling us to pay no attention to that man behind the curtain. But if we take a peek, we’ll see what it is that makes all the smoke and noise.

Go here to read Harold’s post.

MR. PRESIDENT, DON’T MAKE ME REGRET MY VOTE

2009-04-09T20:21:00.001-05:00

Imagine, if you will, that we’re back in the sixties. Imagine that President Lyndon Johnson wants to appoint a national coordinator to oversee all of the civil rights programs that are being enacted. Now, imagine that LBJ appoints Lester Maddox to the post.

Sounds ridiculous, doesn’t it? Yet, there’s something in the air that could prove to be every bit as ridiculous.

Over at Adventures in Autism, Ginger is reporting the rumor that Alison Singer is lobbying to get appointed to the position of Federal ASD Coordinator, which is being created under the new administration. I’m not usually ne to report rumors, but then neither is Ginger. If she’s blogging it, I can only assume that there must be some substance there.

Alison Singer assuming that kind of leadership role would be so wrong in so many ways. Please go here to Ginger’s blog, and read her post. Then leave your comments there.

THE DEBATE ON LARRY KING LIVE

2009-04-05T11:36:00.002-05:00

Below is an edited version of the recent Larry King Live, addressing the open question of the role of the absurdly expanded vaccination schedule and the autism epidemic. Although Jenny McCarthy and Jim Carrey were the main attractions, the real stars of the evening were Dr. Bernadine Healy and J.B. Handley.

The video includes a remarkable display of intellectual integrity from Dr. Healey, the former Director of the NIH. Unfortunately, this edited version does not include any of Mr. Handley’s remarks.

I have always been thankful for Mr. Handley’s contributions to keeping this debate in the forefront. I must admit that there are times when his past demeanor may have elicited a slight wince and the occasional chuckle. On this night, however, he displayed the complete package as a spokesman. He was in control of the facts to a far greater extent than the medical “experts” on the other side, and his manner was a fine balance of rationality and emotion. Very nice job, indeed, JB.

Those who saw the show were introduced to a young girl, with what appears to be relatively profound autism. As every parent of an autistic child knows, however, ASD does not indicate a lack of intelligence or a lack of desire to communicate. Carly Fleischmann has started her own blog to express her thoughts. She was in communication with the show, and some of her comments were posted to the Larry King Live blog. One of those comments was: “I don’t think we can cure autism but I wish we could. The goal should be to get are inner selves out.” I hope that young Ms. Fleischmann elaborates on that thought in her blog in the days to come.

AUTISM YESTERDAY

2009-04-03T10:30:00.000-05:00

Each family on the journey of recovery has its own individual story. We all have our own ideas as to how we got here. We all have different approaches to the process of cure, arrived at in consultation with professionals and by considering the specific underlying problems our kids have. The one thing we all share is hope.

Here’s a new film from Generation Rescue, in which five families share their stories.

"AUTISM YESTERDAY" Autism is Reversible from JB Handley on Vimeo.

WORLD AUTISM AWARENESS DAY

2009-04-02T06:58:00.001-05:00

It’s World Autism Awareness Day, as declared by the United Nations General Assembly. How nice.

And of course, this WAAD is simply a lead-in to “Autism Awareness Month.” Over at Age of Autism, Kim Stagliano has suggested renaming it “Autism Epidemic Action Month,” because:

We’re doers ⎯ not do-gooders. There’s a difference. Awareness is no longer enough. It never was.

That’s a fine suggestion, but for now we’re stuck with the observances recognized by mass media.

It all begs the question; why do we need to be more aware? Is there really anyone out there that doesn’t understand there’s a lot of autism out there these days?

But I suppose there is a need for awareness. The world needs to be aware that we are seeing a real epidemic, that it’s not just a matter of better diagnosis. The world needs to be aware that the question of “why” has not been answered, and that we need to get to the truth, or things are going to get worse. The world needs to be aware that the so-called mountain of evidence supposedly leading away from particular causes has disproved nothing.

The world needs to be aware that we take very seriously our responsibilities as parents. Harold L. Doherty, at Facing Autism in New Brunswick addressed that the other day. He confronted those who attack parents for daring to suggest that there may be non-genetic components in causation, and there may be a hope for a better life through the process of cure. In his well-written post, Harold states:

It is parents who represent our children, protect them and advocate for their best interests. We are not advocating for an abstraction, we are not advocating on behalf of “autistics”, whatever is meant by that expression when used by people who claim to be autistic but claim that autistic disorder is not really a medical disorder. Attacks on parents advocating for their children with autism disorders are attacks on autistic children by attacking those who protect and advance their children's interests.

Reading that reminded me of something my friend, Ginger, wrote a few years ago, in response to a comment questioning who we are to undertake the “drastic” step of attempting to cure our children of autism:

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.

Indeed. Our everyday reality is to constantly weigh potential benefits against known risks, and to inform all of our decisions with love.

On this World Autism Awareness Day, I’m aware that the life of my family has been made infinitely more difficult because of ASD. I’m also aware, however, that ASD has provided the opportunity to be inspired in my life. I am inspired by people like Ginger and Harold, and all of the others I would never have met but for the common struggle. I am inspired by my older children who constantly demonstrate unconditional love and patience for their younger sibling. I am inspired by my wife, who works with a small team of amazing professionals to make my son’s life better. And most of all, I am inspired by the Little Rankster. He isn’t ready to give up; why should I be discouraged.

Be aware. Be very, very aware. Be aware that we are here for our children.

BACK TO THE SOMALI MATTER

2009-04-01T10:01:00.002-05:00

A few months back, we were talking about the perceived rise in diagnosed ASD among the families of Somali immigrants living in the Minneapolis area (see here, here, and here). Well, it seems those parents just might not be crazy after all. Of course, the powers that be are not yet willing to acknowledge that point.

As the Associated Press reported:

The Health Department studied Minneapolis public school autism programs for the three years starting with the 2005 school year. Researchers found the percentage of Somali children in the programs was two to seven times higher than non-Somali children.

“What that doesn't prove is that more Somali children have autism,” Health Commissioner Sanne Magnan said Tuesday. “That is the question that is still on the table.”
. . .
. . . the report said that one of the big questions is whether children might be misclassified when evaluators aren’t familiar with the child’s language, culture and behaviors that might be routine among some racial or ethnic groups.
Here’s a little clue for the Minnesota Health Department. If the parents have been confronted with something they never (or at least rarely) saw in children in their native land, and it’s now occurring at an alarming rate after they moved here, something is going on.

The New York Times quoted a CDC official, who seems to indicate that the agency is willing to take its usual head-in-the-sand approach:

The study was done in consultation with the federal Centers for Disease Control and Prevention. Coleen Boyle, director of the agency’s division of birth defects and developmental disabilities, called the study well done but preliminary, adding, “It highlights the importance of ongoing monitoring.”

There are no plans yet to study autism in Somalis elsewhere or to do genetic studies, Dr. Boyle said.

Why is no thought given to a study that might actually tell us something: an examination about what might be different between these families’ lives in Somalia and their lives here in the US. Is it because such a study might actually tell us something?

JOHN HOPE FRANKLIN

2009-03-31T12:40:00.001-05:00

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.

A SHARED TRAGEDY

2009-03-29T12:00:00.002-05:00

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.

POLITICS AS USUAL

2009-03-08T14:46:00.002-05:00

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.

Sincerely,

Robert J. Wittman
Member of Congress
www.wittman.house.gov

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.

SACRIFICE

2009-03-01T20:02:00.001-06:00

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?

ANOTHER FAT TUESDAY

2009-02-24T08:32:00.002-06:00

It’s hard to believe, but this is our third Mardi Gras away from New Orleans. Oh, we still know when it’s coming. I get a clue when I start getting a lot of new visitors to the blog based on Google searches for “If Ever I Cease to Love.” Then, friends and family start sending us things so we don’t feel left out. (See picture below.)

Like other parts of South Louisiana culture, we have managed to bring Mardi Gras with us to the Great Midwest.

There was a local media personality in New Orleans who used to deliver nightly editorials on television. On Mardi Gras, he always came on and said simply that the station reserve the right to be serious tomorrow, but not today. Don’t we all need that one day a year?

Wherever you are, let a little Mardi Gras into your lives today.

For past posts discussing the sweet and the bittersweet of Mardi Gras in our lives (some of which were not written on Mardi Gras itself), go here.

READ OUR COLLECTIVE LIPS: IT AIN’T OVER

2009-02-19T19:08:00.003-06:00

Last week, after the decision came down from the Court of Claims, we started seeing some amazing statements coming from prominent people within the mainstream medical establishment. Doctors who ordinarily curse the legal system and swear that it’s absolutely the wrong place to decide scientific and medical questions were immediately transformed into true believers. Suddenly, a disputed scientific and medical question was deemed to be settled because a special master (in essence, an assistant judge) decreed it so.

Dr. David Perlin, Director of the Public Health Research Institute at New Jersey Medical School, was one such doctor. He wrote a letter to the editor of The New York Times, which is discussed paragraph-by-paragraph below.

I empathize with the thousands of parents who struggle to raise children with autism and desperately seek answers to its cause. But I am outraged as a scientist and infectious diseases specialist that a vocal group of media personalities and politicians, latching onto a badly flawed vaccine-link hypothesis, could have so wrongly influenced society.

Speaking only as one parent, I would like to thank Dr. Perlin for his empathy, but I’d like to suggest that what we’d really like is for him to understand that this our hypothesis is not the product of media personalities and politicians. First of all, if he would take the time to actually look at the issue fairly (if we are to give Dr. Perlin the benefit of the doubt and assume that he is expressing an honestly-held-albeit-sloppily-arrived-at opinion), he might understand that there is not a single hypothesis at issue here, but several hypotheses that are all subsets of a large and very broad hypothesis.

It is gross oversimplification to speak (or write) as though this was simply a question of blaming thimerosal, in and of itself, the MMR, in and of itself, or even a simple combination of thimerosal-containing vaccines and the MMR. That oversimplification has been the weapon of distraction that many of the more disingenuous defenders of the status quo have used. By resorting to that oversimplified thinking, Dr. Perlin is “latching onto a badly flawed” argument.

Next, Dr. Perlin writes:

By casting doubt on vaccine safety and dismissing extensive scientific evidence to the contrary from a wide spectrum of experts, they instilled fear in parents and detrimentally disrupted vaccine practices worldwide. The consequences of this action may have harmed many more children and adults than they had hoped to help.

Puhleeze! I’ve seen no evidence that vaccination rates are appreciably lower than they ever were.

And just who are this “wide spectrum of experts?” Is he talking about the assembled group at the Simpsonwood conference, who managed to take a study showing a positive connection and convert it to a neutral study (and for some reason, people like Dr. Perlin seem to interpret the word “neutral” as meaning absolute proof of there being no connection). Or maybe he’s talking about our friends in Denmark who realized that the best way to study the impact of thimerosal would be to change the criteria for inclusion in the two populations they supposedly were trying to compare. Dr. Perlin’s right; there are soooo many scientific studies against the hypotheses we cling to. If only any of them had an ounce of scientific integrity, we might actually be convinced.

Next, we get another glimpse of the empathetic Dr. Perlin:

Equally important, it diverted scarce resources away from getting at the true underlying causes of this devastating disorder, leaving the parents of autistic children without the answers they deserve.

Okay, is it just me, or is anyone else thinking about OJ looking for the “real killer” on golf courses all over America? Hey, maybe that’s where they’ll find it ⎯ you know, the gene (the one that’s solely responsible for all cases of autism without the slightest environmental influence).

Finally, Dr. Perlin leaves with this little nugget:

We need to learn that engaging in amateurish science makes for bad public policy.

I couldn’t agree more. That’s why I choose to be highly skeptical of all of the “science” used to validate the safety of the vaccine schedule that’s currently being shoved down the throats of the American public.

SNOOKS EAGLIN (1936 ⎯ 2009)

2009-02-18T19:03:00.005-06:00

Snooks Eaglin at the 2006 New Orleans Jazz and Heritage Festival (with George Porter, Jr. on bass)

There’s some sad news from New Orleans. Snooks Eaglin, the blind bluesman who was one of this country’s greatest musical treasures, passed away today. He had a unique guitar style that influenced countless players, and a stage presence that won him fans around the world. He was known as “the human jukebox” due to his ability to play anything at any time, but always in his own style. One of his best known recordings was “Funky Malaguena,” which was just what the title indicates: the flamenco standard played with a decidedly New Orleans beat.

I was lucky enough to see him for the first time when I was still an impressionable teenager and learning that there was a lot of great music that wasn’t on mainstream radio. I saw him many times through the years, the last time being at the 2006 JazzFest. He never failed to leave me in awe.

An obit from WWOZ (the world’s greatest radio station) can be found here.

Below, enjoy Snooks.

THE LAST PLACE TO LOOK FOR JUSTICE

2009-02-15T19:56:00.002-06:00

After the Court of Claims issued its ruling denying recovery in the thee vaccine-induced autism cases, SafeMinds issued a statement, which included the following quote:

“The government has its thumb on the scales of justice,” said Jim Moody, director of SafeMinds and an advisor to the Petitioners Steering Committee of the U.S Federal Court of Claims. “The Vaccine Injury Compensation Act passed by Congress in 1986 gave immunity to vaccine manufacturers and removed the incentive to create safer products. Meanwhile, the law only gives the illusion that parents will have their day in court. The process is dysfunctional and many families will not see justice done.”

As was stated in the reaction issued by the National Autism Association: “Advocates say they are disappointed in today’s rulings, but not surprised.” Indeed, the decision did not come as a shock to anyone who as spent time around the legal system.

For the last several years that I actively practiced law, I often said that the last place one should go to find justice is the courthouse. As a corollary to that idea, I would add that the further removed from a jury decision one gets, the more remote the chance of achieving justice becomes. And it doesn’t get much further removed than special masters.

The cases pending in the so-called vaccine court never really stood a chance. No matter what anyone says about a reduced burden of proof, the fact remains that there was still a burden imposed on the plaintiffs, and that burden made ruling against the plaintiffs the far easier path for the finders of fact (in this case, the special masters). Add in the fact that a plaintiffs’ ruling would have meant taking a stand against a powerful, mainstream establishment of vested interests, and the ruling of February 13th was a fait accompli.

Even though the “science” supporting the defense in these cases was bullshit ⎯ and there’s really no other word for it ⎯ that bullshit had widespread support in the mainstream, and the emerging science showing a connection between vaccines and the onset of ASD did not. The court system is not prone to accepting emerging science.

I need to make it clear that I am not questioning the personal integrity of the special masters. But judges (even the in-for-life federal judges who will determine the appeals of these cases) tend to take the easy road. There’s nothing easy about questioning what too many in the medical community accept as an unquestionable article of faith.

Unfortunately, the science demonstrating a link between the currently insane vaccine schedule and the triggering of disorders on the autism spectrum is “emerging.” Science always takes time; in this case, it is taking even more time than it should. It’s hard to march uphill carrying the weight of the conventional “wisdom” that is being challenged. So it’s going to be a while longer before the rest of the world is ready t even consider the possibility that we might just be right.

Dan Olmsted, at Age of Autism, likened the recent decision to an early move in a long chess game. Although I don’t think this is a game we’re playing (and I also don’t think that Dan is implying it is), the analogy fits. We still have a long way to go.

For the immediate concern of the three families that got screwed by the decision, and for the thousands of families that were relying on a favorable outcome to give them hope in their own claims, there is the hope of the appeals process. I regret to say that I’m not expecting any different outcome.

But winning monetary awards was never what this struggle has been about. The Court was just one venue of a much broader struggle. That struggle is to get the world to understand what happened to our children, and to get our society to recognize its obligation to help. That’s the justice we need.

There have been many steps on this journey. In reflecting on what the rulings mean, I thought back to April, 2006, and the Mercury Generation Rally in Washington. Like thousands of parents who wanted to be there, I was stuck at home working. The whole day of the rally, however, I kept hearing an old refrain going through my head:

We shall not, we shall not be moved.
We shall not, we shall not be moved.
We’re fighting for our children,
We shall not be moved.

I went home, and I wrote a post, which included the following:

. . . Everything I’ve seen in the last couple of years tells me we’re on the right track. I recall visiting relatives living in tobacco country as a boy. I can still hear my father’s cousin, who operated a wholesale business for tobacco products, railing about those litigation-seeking agitators who were trying to draw a connection between cigarettes and cancer. He could cite lots of impressive studies that “disproved” the connection, but we came to find out those studies were dictated more by interests than science. In the autism controversies, both sides claim that it’s the other guys using “tobacco science.” It says a lot to me that only one side says the debate is over. That side needs to be reminded that there are a lot of us out here, and we’re not going away any time soon.

Yes, there are a lot of us out here, we're everywhere, and we’re not going away any time soon. We’ll be here until the truth is known. Once the truth is known to a degree that nobody can argue against it, we’ll have justice for ourselves, for our children, and for children yet to be born. Let’s not get lose faith just because that justice could not be found in the last place we should be looking.

BE BACK SOON

2009-02-14T17:35:00.001-06:00

I was planning for my sabbatical to last longer, but I think it's almost time for me to get back into the game.

Or as my favorite philosopher, Popeye T. Sailor put it: That's all I can stands, and I can't stands no more!

BE A SCROOGE THIS CHRISTMAS

2008-12-20T07:53:00.002-06:00

I couldn’t resist sticking my head up from my hole long enough to share a yuletide thought.

Why is it that we call people “Scrooge” when they aren’t “Christmas people?” Far too often when we think of Dickens’ classic A Christmas Carol, we focus on the pre-visitation Scrooge, and we forget that it is a tale of redemption. Scrooge at the end of the story is what we should be focusing on. After all, Dickens tells us in his last paragraph that Scrooge was able to keep Christmas as well as any man.

By means of illustration, I’m posting the last two scenes of the 1951 movie version (my particular favorite), with a sublime performance by Alastair Sim. Watch them, enjoy, and resolve to be a real Scrooge this Christmas. Let the spirits of Christmas visit you.

Now if you’ll excuse me, I’m back to my blogging sabbatical. Happy Holidays to one and all.

OBSERVING RADIO SILENCE

2008-12-13T08:10:00.000-06:00

It’s been awhile since I’ve posted anything. Oh, I started a few posts, but always seemed to let them go when they were half-finished. When I couldn’t get around to finishing one on the continuing wit and wisdom of Paul Offit, I realized that maybe it’s time for me to take a little break.

There are still many things to be said. Every day something happens in our little corner of existence that I could spout off about. But there’s simply too much going on in my life at this moment for me to do this blog justice. So it’s time for me to take a little break. I’m not sure if I’m exercising selfishness by focusing on my family and myself, or if it’s really an act of selflessness by sparing you folks from my ramblings. In either event, I’ll be leaving . . . at least for now.

I will still be keeping up with the on-line autism world, and I’ll probably still be piping up every now and then. So this is not some melodramatic announcement of a retirement that will be rescinded in a couple of months. I’m just taking a little break.

Finally, in keeping with the season in which I am writing this: Merry Christmas to you and your families, and God Bless us, every one.

OUT OF AFRICA (AND INTO THE STATE OF DENIAL)

2008-11-25T09:46:00.002-06:00

Nobody writes about autism issues better than Mark Blaxil when he's on a roll. And he's on a big-time roll over at Age of Autism, writing about how the Minnesota health authorities are not surprisingly burying their collective heads in the sand rather than ask tough questions as to why the autism rates are so high among Somali refugee families in Minneapolis. Check it out here.

DON’T STRETCH OUT THE SCHEDULE; THERE’S TOO MANY MORE TO BE ADDED

2008-11-21T14:25:00.001-06:00

A television station in San Diego recently ran a balanced story on the growing use of alternative vaccination schedules. And whom do you suppose the American Academy of Pediatrics got to tell us all that it’s all a lot of hooey and we should just shut up and listen to the authorities? Why, it’s our old pal, Paul Offit!

There’s really no need for me to take on Dr. O this time; Ginger’s already done it. You can find her post and a link to the video here.

AGAINST MEDICAL ADVICE

2008-11-21T12:41:00.003-06:00

I was approached a little over a month ago, and was asked if I would be interested in reviewing a new book, Against Medical Advice (Little, Brown and Co., 2008). In the email I got from the publisher’s representative, I was told that I, and visitors to my blog would “find it very relatable and moving.” [Disclosure: I was sent a free copy of the book in order to read and review it.]

The book is written by James Patterson, the well-known novelist (Kiss the Girls; Along Came a Spider), and an old friend of his, Hal Friedman. Despite Patterson’s background as a writer of thrillers, this is a piece of nonfiction. It tells the story of the struggle by Friedman’s family to deal with “an agonizing medical mystery:” his son’s Tourette’s Syndrome.

I’ve been struggling with this review ever since I read the book. It’s not that I didn’t find it “very relatable and moving;” I did. I think it’s a very good book that’s well worth the time spent reading it. It’s just that I wanted to like it a whole lot more.

The book’s strong points are also its weaknesses. The story is told not from the standpoint of Hal Friedman or his wife, but rather it’s written as if by his son, Cory. This was done with the full cooperation of Cory (now a young adult), and is seemingly based in part on his own writings. Presenting the story with Cory’s point of view, filtered through the fast-paced style of an experienced novelist, takes the reader on a harrowing ride through what can only be described as Hell.
And Hell it was for Cory. His Tourette’s has unique aspects (some would call them comorbidities) that befuddled the “experts,” and made everything that much more difficult:

In sophomore year, it’s becoming clear that obsessive-compulsive disorder, or OCD, is a bigger part of my condition than we thought. Right now I’m mostly experiencing the kind of OCD they call intrusive thoughts ⎯ ideas that can take over your thinking. The worst thought I have now is that there’s no point to anything in life. This obsessive idea has suddenly paralyzed my desire to do anything . . .

The fact that the focus is on Cory’s own Hell rather than that of his family keeps it from becoming a “pity party.” On the other hand, knowing that the book was written as nonfiction by experienced writers makes the use of Cory’s point of view to be almost gimmicky at times. Moreover, there’s a lack of perspective, which can be somewhat effective but leaves the reader wanting more information that actually comes through.

And it’s that lack of information that is somewhat maddening. There are gaps in the chronological narrative that leave many questions unanswered. And indeed, one of the central questions the book raises ⎯ why Cory got better ⎯ is answered only by the educated guess of Hal Friedman in one of the few passages not told in Cory’s voice.

Enough information comes through, though, to make clear the real theme of the book: that the medical establishment the family relied upon to help Cory deal with his condition did nothing but make things a whole lot worse.

After years of being moved from one pharmaceutical to another, with ever-increasing dosages, Cory eventually resorts to self-medicating with alcohol. After a particularly bad episode involving alcohol, Cory wrote a long letter to himself, that includes the following:

Am I insane? It would seem so. I can’t stop hurting myself.
My parents don’t know what I’ve gone through. If they did, they’d be saying every word to me as if it were their last.
I deserve the world.
And I am stronger than the worst things that happen to me.

That episode is the turning point of Cory’s life. In the view of Hal Friedman, in the only chapter written in his voice rather than his son’s, Cory’s “recovery” comes about because “he made the decision to change.”

At some point, Cory’s parents joined in that decision as well. The opening chapter of the book relays the incident from which the title is drawn. Mr. and Mrs. Friedman are checking their son into a rehab facility to combat the alcohol addiction that is claiming their son. Cory is the one who recognizes that particular institutional setting will be a huge mistake, and he pleads with his parents to not leave him there. For the first time, the parents decide to trust their son’s instincts rather than the mainstream medical advice that has led them from one pharmaceutical product to another. They leave “against medical advice.”

Unfortunately, it is hard to tell just where that incident falls in the otherwise chronological narrative following that chapter. As most of the latter part of the book details Cory’s success with various programs and strategies, more context would have made that section stronger.

As I mentioned, the only part of the story told from the father’s perspective consists of a five-page epilogue, indicating that Cory’s improvement is attributed to Cory’s desire to get better, and also to the elimination of the “medications prescribed in good faith but with unhappy results.” Although Mr. Friedman uses the word “recovery,” it is acknowledged that Cory still experiences many clinical manifestations of his Tourette’s. It is unclear how much of Cory’s “recovery” is due to an acceptance of the level of the syndrome Cory lives with in the absence of the aggravating factor of being treated as a walking pharmaceutical experiment.

At 269 pages (not including some appendices), the book is a little on the “light” side. I think some time could have been devoted to the parent’s experience (including their expectations) without removing the focus from Cory. Moreover, giving voice to the parents might have made the representation of Cory’s perceptions to be less awkward.

All that being said, I liked the book ⎯ just not as much as I wanted to. Its flaws notwithstanding, it’s a good read.

. . . AND HERE'S YOUR CONDESCENSION

2008-11-18T04:54:00.002-06:00

As a follow-up to the last post about the outbreak of ASD among the children of Somali refugees in Minneapolis, Age of Autism has posted accounts by both David Kirby and Nancy Hokkanen regarding a recent forum involving heath officials in Minnesota and the Somali families (here and here). Not surprisingly, most of the officials spent their time refuting any connection between the numerous vaccines the children were subjected to in the United States that they did not have to take in Somalia. Their stating that opinion is not really a problem; I certainly would not want anyone to refrain from doing so. What bothers me is the condescension shown toward the families.

Families complained about the fact that they really had not been told anything they didn't already know, and that there was no plan discussed to discover what the problem is if it is not vaccines. But the real indication of a lack of concern is that the health officials had, for the most part, disappeared by the time the parents presented their own panel. The Minnesota health commissioner had started the day off by declaring: “Today is the start of a dialogue, of listening to your concerns and frustrations, and looking for solutions together.” Words like that can be empty in any language.

WELCOME TO THE UNITED STATES; HERE’S YOUR AUTISM . . .

2008-11-15T08:44:00.001-06:00

David Kirby has a new piece on the Huffington Post, looking at the development of autism in American-born children of Somali refugees in the Minneapolis area. Those families are now seeing an ASD rate that is truly alarming: one-in-28.

Not surprisingly, many of the affected families are focusing on one of the aspects of American life that is different than their native country: the vaccination program. Mr. Kirby covers that, and also one hypothesis addressing what might make for the difference among the Somalis. Dr. Gregory A. Plotnikoff, medical director for the Institute for Health and Healing at Abbott Northwestern Hospital, believes that the move to an area at a higher latitude has had an impact on the Somalis, who may have a naturally lower ability to produce Vitamin D. And the decreased Vitamin D levels translates to less creation of glutathione in the body, and that deficiency makes it more difficult for children “to handle heavy metals and oxidative stress.” (I need to point out that potential exposures to heavy metals and oxidative stress may include vaccines, but are certainly not limited to them.)

It should go without saying (but I’ll say it anyway) that the Somali cases ⎯ at this point anyway ⎯ are nothing more than anecdotal, and prove nothing. But as I have tried to point out before, anecdotes are an important part of any scientific inquiry. They signal the need to ask particular questions. And the questions in Minneapolis require the full attention of the scientific and medical communities.

Unfortunately, the medical establishment is predictably slow in responding. At least one mother states that she brought the Somali-autism problem to the attention of state and local health officials as early as April, 2007. Those pleas for help were ignored until the news media began to ask questions. Now the state’s health department has assembled a team under an epidemiologist. That team will soon be meeting to discuss what they need to do to figure out if there is even a problem that needs to be studied.

In the meantime, many of the affected families are returning to the country they came here to escape.

OF RED HERRINGS AND STRAW MEN

2008-11-08T17:12:00.001-06:00

I always wince a little whenever I see phrases like “red herring” and “straw man” bandied about in our little internet discussions. I always get the impression that the person using such a phrase is more interested in scoring debate points than he/she is in actually listening to the other side. So it is with great irony that I find myself writing these words.

Our old pal, Dr. Paul “I’m not really interested in the millions I’ve made; only in your children” Offit recently published his latest manifesto, entitled Autism’s False Prophets. As I mentioned in my last post, I don’t intend to review the book, as that would involve actually purchasing it. But I am fascinated by the recent media coverage surrounding the release of the book.

The press seems content to accept at face value Doc O’s pronouncements that there have been all those epidemiological studies that refute any connection between the increases in the vaccine schedule and the rise in diagnosed autism spectrum disorders. After all (insert sarcastic tone here), it’s far too difficult for the average reporter to actually look at the studies and see what was actually being measured, or even to find the various published critiques of those studies. And surely kindly Dr. Paul wouldn’t mislead anyone by asserting that there is absolutely no scientific evidence to suggest the possibility of a connection. (For the umpteenth time, let me emphasize here that I do not believe the connection has been established beyond doubt, but I do believe that there is enough clinical and biological evidence to warrant a lot more study).

No, the press isn’t interested in taking a critical look into the science. They aren’t asking why a pediatrician who has never been active in the treatment of autism should be considered an expert in causation of autism. And they sure aren’t troubled by the vested interest Paul Offit has in absolving vaccines of any guilt in being one of the possible triggers of the ASD epidemic. But what they are interested in is lurid details that have nothing whatsoever to do with Dr. Offit’s thesis ⎯ that’s right, a red herring.

Reportedly in his book, and certainly in his interviews, Dr. Offit has alleged getting hate mail, assaults, and even death threats. He specifically has spoken of getting an anonymous phone call, mentioning the name of one of his children and the name of the school the child attended. Now before I go any farther, let me emphasize that nothing could possibly condone that kind of conduct. If Dr. Offit did indeed receive such threats, I would certainly hope that the authorities aggressively investigated the incidents. No matter who is the recipient of such threats, I would hope that the perpetrators are found, prosecuted and appropriately penalized.

It’s terrible that I have to show any skepticism as to Dr. Offit’s veracity, but let’s face it, we only have his word for it and he’s not someone that I find very credible. But assuming arguendo that there is at least some shred of truth in what he’s reporting, the question arises: what does that have to do with whether overvaccination and/or vaccine components may be a potential trigger of ASD.

Yes, I get it. This is an emotional subject for many of us, and part of Dr. Offit’s argument is that we are so blinded by our rage that we are willing to listen to the “false prophets” instead of the “real doctors” like him. Bullshit! That does nothing to prove that Paul Offit is right; it is merely a red herring that he threw out as bait for a ravenous press, and they bit down hard.

As at least one story by ABC reports, there has been an ugliness to the debate that goes beyond the bounds of decency. The ugliness extends to both sides. One TACA representative recounted being labeled a “baby killer.” I can relate to that. I’ve been called a child abuser because my wife and I choose to attempt curing our son of the disabling aspects of his ASD, and I’ve even been called an accomplice to murder because I dare to talk about biomedical interventions in public. I’ve never received anything that I would consider to be a credible threat to my safety or to the safety of my family ⎯ but it would only take a minor bit of exaggeration to imply the existence of threats.

Is Paul Offit exaggerating when he describes the threats to his and his family’s safety? I hope so; I really don’t want to believe that anyone’s safety has been placed in jeopardy because of participation in our little debate. And as I have said, if threats have actually been made, I truly hope enough of a trail was left so that the authorities can take appropriate action. But again, real threats would not make Dr. Offit right.

For some reason, the issues of cure (and I always feel the need to clarify that I view that concept as a process rather than a result) and the potential connection between vaccinations and the triggering of ASD wind up creating a passionate debate in which there is no middle ground. All too often the words that are used can easily be termed “hate speech,” and gas is thus poured onto the fire.

To be sure, that gas has been thrown by both sides. On “our side,” there was a blogger named John (he probably still has a blog, but his irrelevance has finally caught up to him) who regularly engaged in the worst imaginable hate speech. Some on the “other side” called upon me, on multiple occasions, to disassociate myself from John. And on multiple occasions I made clear that I saw no need to disassociate myself from someone with whom I did not associate in the first place. I went so far as to warn one of the prominent voices from the “other side” that he and his friends were spending too much energy directing hatred at that blogger, and they were making John a much more important figure than he otherwise would be.

Ironically, those people who railed at John were the same ones who forever scream at the logical fallacies they believe they can spot in others arguments. And here they created the ultimate straw man to try and knock down. I’m still not certain that the creation of that straw man was not intentional, so that there would be an easy target to direct hate at. Likewise, I’m not at all sure that the focus on the alleged threats against Paul Offit ⎯ which threats may or may not be genuine ⎯ is not intentional. Threats are a sexier issue than sufficiency of science, and there is no bait the press enjoys more than fresh red herring. As long as the press is biting down on that bait, they’re too busy to ask real questions.

A FRIEND'S RESPONSE TO THE FALSE (PR)OFFIT

2008-10-26T14:16:00.006-05:00

Paul Offit recently published his book on his belief that we have all been taken in by false profits when it comes to the potential link between the administration of vaccines and the rise in autism spectrum disorders. Predictably, the mainstream media has taken him very seriously, despite the fact that he has not actively diagnosed or treated autism. It’s enough that he is Paul Offit.

Of course, one part of the story feeding the media attention is the claim by Dr. O that he has been the target of death threats. I have no way of determining whether those threats actually exists, or if their existence is nothing more than the “victim’s” magnification of seriousness of the crap that all of us who have publicly debated this issue receive from one side or the other. I have said before that I find any personal attacks to be distasteful, and I gladly join in condemning threats of violence directed at anyone ⎯ even Paul Offit. Whether or not such communications are intended to be serious, they are potentially illegal and morally reprehensible.

No matter how sympathetic I might be toward Dr. O’s concerning the alleged threats made toward he and his family, however, I still find myself disgusted at his disingenuous arguments, and his cavalier attitude.

I have not read his most recent book, so I can only comment on what he is saying in his media blitz to promote the publication. But I would only be repeating the things I have written time and again because Paul Offit is saying nothing new. Instead, I’ll let someone else do the talking.

In connection with a recent fluff piece on Dr. Offit’s book, Newsweek posted a few videos on its website. In one, kindly Doc O talks about how sad it is that we’re all too dumb to understand science. In another, the blogger, Kristina Chew, explains why she does not believe vaccines had anything to do with her son’s autism. But Newsweek also posted the video I include below, consisting of an interview with Bob Krakow, a guy who gives lawyers a good name and who I am proud to call my friend. As always, Bob speaks for a lot of us, even when he is just talking about the singular experience of his own family.

ADDENDUM:

Please see the comments section to see what Bob Krakow has to say about this video. As could be expected, much wound up on the cutting room floor, and there was also a lack of communication about the nature of the story.

SOMETHING ELSE THAT MAY HAVE BEEN SWEPT UNDER THE RUG

2008-10-21T06:41:00.002-05:00

Over at Age of Autism, Kent Heckenlively looks into the potential role that SV-40 (a/k/a "the monkey virus") may have played in the development and rise of a host of auto-immune disorders, including autism. It's a big question that has not been given much attention in the vaccine wars. Check it out here.

OH GOD, HERE WE GO AGAIN

2008-10-15T20:05:00.004-05:00

I once was a fan of Denis Leary. He’s funny, irreverent, and often he’s pretty insightful. But now, it seems he doesn’t know the difference between “insightful” and “inciteful.”

It seems that Mr. Leary recently wrote a book with the provocative title, Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid. In it, he decided to include a chapter that could have been written by Michael Savage.

It has been reported that the book includes the following:

There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you – yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.

In a recent interview, Mr. Leary said he wouldn’t mind if his book tour would be picketed by Jenny McCarthy because it would help sell more books. I suppose that’s what it is all about. Spout out anything that comes to mind as long as it sells.

Maybe I wouldn’t mind if his ignorance was pointed in another direction. That’s my failing; I should be just as pissed off at any of his rants that picks unfairly at one group or another. I suppose I should be grateful. Mr. Leary has showed me something about myself that is a little uncomfortable. I can work on that. He’s also shown me something about himself, and I can work on that too. I can henceforth ignore Mr. Leary in all of his endeavors.

ADDENDUM:

Within a half-hour of posting the above, I got a Google news update indicating that Denis Leary is trying to explain his comments. According to one story, Mr. Leary says that we all need to read the book so that we may see:

. . . the sections I thought made my feelings about autism very clear: that I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.

He goes on to say:

The point of the chapter is not that autism doesn't exist—it obviously does—and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know," Leary continued in the statement he released today.

The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.

Of course, this entire misunderstanding can be easily avoided simply by doing one thing — reading the book. Taking one or two sentences out of context — especially when it involves an entire chapter devoted to the subject — is unfair and ill-advised.

Fair enough. I haven't read the book. But assuming the quote from the book is reasonably accurate — not necessarily complete, but reasonably accurate — there is an obvious disconnect between what he wrote and what he says he intended. I'm not buying it.

ADDENDUM 2:

Check out what Ginger has to say on this. Her post is thoughtful, balanced, and right on target.

IT’S GETTIN’ UGLY ⎯ MAYBE WE ALL NEED TO TAKE A CHILL PILL

2008-10-13T10:04:00.000-05:00

Yeah, I’ve been away from blogging for awhile, but I haven’t been in a cave. The news lately has been overwhelming: the economic collapse (and I don’t think that’s too strong a word), the ongoing tragedy of the war we’ve found ourselves in, and in our little corner of the human race, the continued pronouncements that all is well and there’s really nothing to all this wild theory about a connection between autism and over-vaccinations (pronouncements that are empty of true backing when the basis is critically examined). And permeating everything is the trauma our nation inflicts upon itself every four years: the presidential election.

As has increasingly become the case with each election, it’s getting ugly. The mud that has traditionally been slung by surrogates in the print media and airwaves has now moved to the internet, where it has gotten way out of control. Because there are no checks or restraints on what gets anonymously posted on the web, any rumor can take on a life of its own and quickly be magnified. Where once we rolled our eyes at half-truths being spouted about one candidate or the other, now we have to sift through outright falsehoods.

Add to that the rhetoric designed to appeal to our prejudices. When times are perilous – and surely they are perilous now – the language of the debate begins to include those little code words that impugn the “other guy” because he or she is what he/she is.

The bitterness spills from the campaigns into the community a large. Recently the on-line autism community has gotten as ugly as I have ever seen it. What usually unites us now divides us, and all based on our perceptions of who is “our guy.” We dissect their stated positions and examine their past records viewed through the lenses of our own self-interest; and we buy so deeply into one side or the other that we fail to see the big picture.

There are two things we all need to keep in mind.

First, these are perilous times (I know I said that before, but it bears repeating). The issues our country faces are many, and all of the issues will have an impact on all of our lives. As deeply as autism effects my family, the economy and healthcare issues are almost as important to that concern (and other concerns) as who will support particular research on autism. And those of us with neurotypical children at or near military age all feel the anxiety of what our foreign policy may bring next. The world is larger than our little corner.

Second, acknowledging that autism is the number one issue in my family and possibly yours as well, we have to recognize that talk is cheap and good intentions don’t always translate into reality. Nothing will be accomplished for our families without action by both the executive and legislative branches, and arguably the judicial branch as well. And the only way that will happen is if we continue to stick together, concentrate on what unites us, and make our collective voice heard by whoever is in the Oval Office, and in Congress as well. We cannot count on politicians to be advocates for our children; we must fill that role ourselves.

I can’t help but believe that whoever wins will be a huge improvement over what we’ve had the last eight years. Like everyone else, I have preferences in this election. No matter what the outcome of the election is, however, we all have to recognize that our civic rights and responsibilities do not end when we step out of the voting booth.

Our democratic process belongs to us all: those who voted for the “winner,” and those who did not.

POST 200: RENEWING MY COMMITMENT TO THE PROCESS OF CURE

2008-08-28T20:34:00.000-05:00

I’ve had to do a lot of traveling for my employer lately. Frankly, it sucks. I really don’t enjoy long flights, bad hotel beds, and driving rental cars in unfamiliar places. Mostly, I don’t like being away from home and family.

The only positive thing about being away from home is that it gives an opportunity for self-reflection. There have been a few things going on in my life that are prompting me to take a hard look at myself. And I can’t say that I like everything that I see. I’ve got some things to work on.

But there are things I’m doing right. I certainly try to do right by my children. I love all three, and I can’t say that any of them is more important to me than the others. That being said, though, there can be no denying that the Little Rankster probably takes up a lot more of my thoughts and efforts than do the older two.

In looking at my life of late, one thing has come through with amazing clarity: how much the Little Rankster means to me, and just how much richer my life is because he’s a part of it. I simply cannot imagine a life without him. And that’s why I feel I need to do everything I can to alleviate the negative aspects of the ASD he has.

I used to have on-line chats with friends from the neurodiversity movement. Eventually, those discussions fell by the wayside. Most of them could never quite grasp the fact that I absolutely accept my son the way he is. What I do not accept is the inevitability of obstacles that keep him from using the gifts that are inside of him.

THE TIMES, THEY ARE A-CHANGIN'

2008-08-02T23:51:00.003-05:00

Ginger reports that Drugs.com is now listing autism as a potential adverse reaction to Sanofi Pasteur's Tripedia vaccine. Will we be seeing that for more vaccines?

GETTING IT RIGHT (OR NOT)

2008-07-29T19:19:00.003-05:00

There are certain people I've gotten tired of hearing from in this ongoing autism debate. They're the people who are more interested in being heard and believed than they are in getting it right. Paul Offit is one of the people I'm tired of, despite all the great material he's given me through the years. Roy Grinker is another one of them.

Grinker is an anthropologist, who wrote Unstrange Minds, which was an instant hit with those who would deny the existence of the epidemic before their eyes. As Dan Olmsted recently wrote over at Age of Autism, though, Grinker made a surprising number of errors in his book. To be sure, not al of the errors can be considered critical to his basic thesis (that there is no epidemic). But the obviousness of the errors provides ample cause to question his attention to detail and his skills (or lack thereof) as a researcher.

One has to wonder if he's been this sloppy with any scholarly writings in the real field of his expertise.

Read Dan's report here.

MY FELLOW AMERICANS . . .

2008-07-28T19:25:00.002-05:00

On occasion, we need to look beyond and envision a different world. Are you still deciding which candidate in the upcoming election gets your vote?

Submitted for your approval . . .

(With thanks to Van, the campaign manager.)

CONFLICTS . . . WHAT CONFLICTS?

2008-07-26T09:06:00.002-05:00

Ginger has posted the recent CBS story about the economic ties between the vaccine industry and three of their biggest fans: the AAP, Every Child by Two, and our old pal, Dr. Paul Offit. It's not earth-shaking news to those of us who follow this issue with special interest, but it's good to see a major news outlet spreading the word to the general public. Kudos to CBS and Sharyl Attkisson.

Check it our here.

A SAVAGE TWILIGHT

2008-07-26T09:00:00.002-05:00

It is Michael Savage's right to say what he wants. It is equally our right to make sure Mr. Savage's benefactors know how we feel about his exercise of free speech. It seems that a whole lot of advertisers are listening to us.

Special thanks are due to John Gilmore and Autism United for leading the charge.

AN OPEN LETTER TO ADVERTISERS ON “SAVAGE NATION”

2008-07-21T21:23:00.005-05:00

To:
Radio Shack
Budweiser (Anheuser-Busch, Inc.)
Home Depot
AFLAC

It is my understanding that your company advertises, on either a national or local basis, on the radio show hosted by Michael Savage. As you have probably heard by now, Mr. Savage recently commented on the growing epidemic of autism in terms that go beyond ignorance and offensiveness. The transcript of his diatribe reveals that he maintains that “[i]n 99% of the cases, it’s a brat who hasn’t been told to cut the act out.” According to Mr. Savage, we can solve this worldwide health crisis by simply telling our children to quit acting like “morons,” “putzes,” or idiots.

As the father of a child who has been diagnosed as being on the autism spectrum, I can assure you that the problems my family and hundreds of thousand other families face are very real. Rhetoric like Mr. Savage’s makes our lives that much more difficult by spreading irresponsible notions about the challenges we face every day.

Mr. Savage’s recent explanation that he was merely trying “to boldly awaken parents and children to the medical community’s attempt to label too many children or adults as ‘autistic’ ” does nothing to remove the sting from his words. His explanation is nothing short of inane. Moreover, his stated intention to open his show up to those who disagree with him is a hollow gesture. As was reported in the New York Times, Mr. Savage prefers to stand by his remarks and has no intention of apologizing.

Indeed, an apology from Michael Savage would be empty, as it would undoubtedly result from pressure brought to bear by his sponsors or affiliate stations. I am not suggesting that you bring that kind of pressure. Instead, I am suggesting that you do the right thing and follow the example of Home Depot and AFLAC, both of whom have indicated they will pull all advertising from Michael Savage’s show.

I understand that some have indicated that they do not advertise on the show, but I also understand that Radio Shack, Budweiser, Home Depot, and AFLAC all carried ads on his show today, at least in some markets. Without doubt, pulling advertising may take more than one day. But be aware that you will be judged by more than promises. It is not enough to stop advertising on a national basis, and close your eyes to what goes on at individual affiliate stations. Ignoring the problem is exactly what leads to things like Savage’s contemptuous actions. To act in good faith in this matter, you should communicate to all of your advertising agencies that you will not tolerate advertising on that show.

Every consumer has a choice on where to buy hammers and nails, where to get electronic devices, or what beer to drink. Most of us like to feel good about the products and services we spend our money on, and feeling good about the providers of those products and services is a large part of that.

Too many consumers now know the reality of autism that Michael Savage would deny. (As some of us say, we are everywhere, and we’re not going away any time soon.) Many of us have been your customers; many of us have felt good about being your customers. We ask that you keep us in mind as you make your corporate decision on whether you really wan to have your name associated with that of Michael Savage.

Wade Rankin
http://injectingsense.blogspot.com

UPDATE: POSITIVE RESPONSE FROM RADIO SHACK

I received the following response from Radio Shack. Although it was also left in part as a comment, I thought it important to put it here as an update in its entirety. It is a thoughtful response, showing that Radio Shack wishes to be a good corporate citizen.

Thank you for your email to RadioShack’s Media Relations Department. We appreciate and share your concerns.

We would like to emphatically state RadioShack was not and is not a sponsor of the Michael Savage radio show. In fact, our agreement with the radio network airing his show specifically excludes his program (along with several others) as one on which our commercials may appear. The fact that one or more of our ads did run on the July 16 broadcast of this show was in direct violation of our advertising contract with the network. The network has admitted their mistake to us and apologized for the confusion they have created. Likewise, we are investigating whether any other radio stations who air the syndicated version of the program may have violated our advertising contracts and instructions. If so, we will demand a proper remedy.

Unfortunately, the network’s mistake was heard by many individuals such as you who have since spread the word that RadioShack sponsors this program. Likewise, Web sites that were quick to post our name as a sponsor without investigating the actual facts have been very slow to correct the record online. Until that happens, we would greatly appreciate your help in spreading the facts through your own personal network.

Once again, thank you for writing and allowing us the opportunity to set the record straight.

Sincerely,

Charles Hodges
Director Media Relations

UPDATE 2: HOME DEPOT

And here's a generic response from The Home Depot (not that Radio Shack's reply wasn't a form as well). The support by Bernie Marcus the release mentions is a lot of money given to Autism Speaks, a group that I'm not all that fond of. I have to observe that Mr. Marcus and Home Depot had a far more positive and forceful response to the Savage attack than did AS.

Thank you for contacting us in this matter. The Home Depot does not
currently advertise on The Michael Savage Show, nor do we have any kind of sponsorship in place with the program. We strive to ensure that the programs we support through advertising reflect our core values. Feedback from customers like you plays a large role in helping us to maintain these standards and I really appreciate you bringing this matter to our attention. Again, we do not advertise with this program and any suggestion of such support is false.

In fact, one of our company's founders, Bernie Marcus, is very active in the effort to build awareness and raise funding for autism research. We join him in this effort and have supported several of his campaigns. Learn more about his programs for autism at www.marcus.org.

The Home Depot

UPDATE 3: SHORT AND SWEET FROM THE BEER GUYS

Dear Wade,

Thank you for your recent e-mail to Anheuser-Busch.

Please understand that Anheuser-Busch is not a sponsor or supporter of the Michael Savage Show.

Again, Wade, thank you for taking the time to contact Anheuser-Busch and allowing us to explain our position.

Your Friends at Anheuser-Busch

BEYOND IGNORANCE; BEYOND OFFENSIVE

2008-07-17T19:42:00.004-05:00

Until recently I was blissfully unaware that there was an infestation of the airwaves known as Michael Savage. Apparently his radio show is widely syndicated, and he recently addressed the autism epidemic:

SAVAGE: Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden ⎯ why was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], ‘I don’t know, the dust got me.’ ” See, everyone had asthma from the minority community. That was number one.
Now, the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That’s what autism is.
What do you mean they scream and they’re silent? They don't have a father around to tell them, “Don’t act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”
Autism ⎯ everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said ⎯ “Don't behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.

Mr. Savage apparently didn’t take his father’s advice. He’s behaving like a fool. Mr. Savage is an idiot. No, that gives idiots everywhere a bad name. There really is not a good adjective to describe him. Does he really think that families all over the world are going through this for all the perks that come with having an autistic child? Does he really think that the stimming, the sensory problems, the communication problems, the gut issues, and the rest of the laundry list of symptoms you can add in here are voluntary?

Mr. Savage, stop acting like a putz!

Now, if you’ll excuse me, I’m off to find out if one of my local radio stations carries this A-Hole’s show. If so, I’ve got to make sure the buttons in my car radio don’t include that station.

UPDATE:

NAA has asked for an apology and retraction from Savage, as well as time on his show to educate this buffoon. It's a nice thought, but I won't hold my breath.

SECOND UPDATE:
The response to this post has been overwhelming, albeit not surprising. Thanks to all. For my open letter to Savage's advertisers, see the next post.

GINGER'S SNARKY AND ANNOYED . . . AND RIGHT!

2008-07-03T08:39:00.004-05:00

The Rankins are on vacation, but I've been trying to keep up with my favorite blogs while we're gone. My pal, Ginger, posted what amounts to an open letter to Julie Gerberding, and she's snarky and annoyed. I'm right there with 'ya G.

DEATH BY IGNORANCE

2008-06-19T21:34:00.002-05:00

This is just wrong. We all struggle with schools, trying to educate the educators so that our children can get the most out of their time in the classroom. But we never expect we have to teach them how to avoid killing our children.

It's just wrong.

THE HYPOCRISY OF SOME

2008-06-15T14:08:00.001-05:00

In my last post, I touched on one of the many things I’ve found to criticize in Paul Offit and his ilk:

. . . using scare tactics and misrepresenting his opponent’s position is what Paul Offit does best. He is finally acknowledging that the debate is broader than just the MMR or just thimerosal. But he does so by sneering about “shifting hypotheses.” Maybe I’m just a layman when it comes to science, but I thought the entire idea was to keep exploring until you find the truth. What we seem to be finding is that neither the MMR hypothesis nor the thimerosal hypothesis were wrong per se, but neither were right in an of themselves. Both appear to be part of a broader process that we are only starting to understand. Understanding the problem, however, may not be in Paul Offit’s interest.

My criticism on that point is not restricted to Dr. Offit. It seems that a running theme we hear all the time is about “shifting hypotheses” and “moving goalposts.” I find it astounding that the ones who scream the loudest about adhering to good scientific principles are so quick to suggest that scientific knowledge is static, and that we should not change the focus of our inquiry.

We were not wrong to ⎯ and are not wrong ⎯ to demand full inquiry into the potential roles that thimerosal-containing vaccinations and live-virus vaccinations play in triggering ASD. The only mistake anyone made was focusing in on those problems in isolation of the broader questions of the interaction of all of the vaccinations our kids get, and of environmental issues in general. That we now recognize the need to look at those issues does not indicate that we were ever wrong.

Those who mock our willingness to re-examine our direction are clearly attempting to create the impression that we are hypocrites for not sticking blindly to ideas that were simply too narrow (albeit true). But who are the hypocrites?

J.B. Handley recently wrote a post on this subject at Age of Autism, entitled “Goalposts.” It’s a great rejoinder to our critics, and J.B. spends a little time giving a brief history of the “scientific” hypocrisy of those who would deny the problem. It’s a good read.

And lest I forget, Happy Father’s Day to all the dads out there who make the extra effort to be involved in their autistic children’s lives, who work with their children on a daily basis to help them get through a not-always-so-kind world, and who never stop fighting for all of our children.

WHY IS ANYONE TAKING THIS GUY SERIOUSLY?

2008-06-08T21:01:00.002-05:00

Before I joined the corporate world, I spent many years as a litigator. One of my most frustrating experiences in the courtroom came when a judge (who was well past his prime) allowed the other side’s expert testify in technical areas well beyond his expertise. I have much the same reaction whenever I hear Paul Offit speak.

Dr. Offit, of course, is a specialist in infectious diseases. My understanding is that he does not have a private practice. Indeed, he would have almost no time for it. He spends his time working on the development of new vaccines, acting as a spokesman for the vaccine industry, writing books, and generally holding himself out as an expert in a variety of fields regardless of any expertise he may have in those fields.

Reportedly, he is presently at work on a book about autism, although I doubt he has ever treated a single patient for autism. And without really understanding what autism is, does he really have the qualifications to expound on what may trigger ASD?

Of course, Doc O has never let a little thing like lack of qualifications stop him before. It is his repeated pronouncements on the deficiency of the American legal system ⎯ an area I know a little about ⎯ that drives me crazy.

Doc O recently presented at a teleconference for pediatricians sponsored by the Pennsylvania Immunization Education Program. It’s now available on-line. The subject was how to reassure parents that they should continue to rigidly adhere to the official vaccine schedule in the post-Poling era.

Although he spent time discussing his opinions on the theoretical dangers of the number of vaccines (or in Offit’s opinion, the absence of any potential danger at all), most of the presentation was devoted to a hysterical rant about the manner in which the legal system deals with cases alleging vaccine damage.

Keep in mind that Doc O was speaking as an expert in public policy and the legal system, yet he insisted on parading his ignorance of that system by continually referring to the “decision” made by “the court” in the Poling matter. There was no decision by the court; there was a concession by the attorneys representing the government (i.e., the defense), which has paved the way for the Poling family to recover damages (an award has not yet been determined). Offit repeated that mischaracterization of what happened several times, to the point of specifically criticizing the special masters (attorneys appointed by the Court of Claims to hear the matter in much the same way as a judge does and to make findings of fact). Finally, when the floor was opened for questions, one of the doctors listening corrected Doc O, the “expert” brushed aside the distinction as mere “legal language” and pronounced that it was a “decision” because they had to decide to concede. Huh?!?!

Offit’s believes the vaccine compensation system once served a purpose, but has now gone into dangerous turf because the court is having to address claims that do not fit neatly into the vaccine compensation injury table. Parenthetically, I have to admit to getting the giggles when I heard Doc O extol the virtues of the table, which in his own words, “includes injuries, which clearly have been shown either biologically or epidemiologically to be caused by vaccines.” In criticizing the hypothesis of a vaccine connection to ASD, Offit has relied almost exclusively on epidemiology, especially since the mounting biological evidence does not support his beliefs.

In any event, Doc O’s thesis is that we shouldn’t have lawyers making medical decisions. Indeed, there is always a danger of empowering courts of law to determine broad scientific or technical issues. Nobody should believe that the issue will be decided simply because a legal decision is made. The only thing that can happen is that the court will attempt (or not, if one remains skeptical) to reach a just decision based on an understanding of the present state of scientific knowledge. The court’s understanding, of course, may be right or wrong.

The answer, though, is not to take the decision-making power away from the courts. That is the answer Paul Offit clearly wants: to take the issue away from courts of law altogether, and hand such cases over to some kind of body run by the mainstream medical community. That solution puts us on the slippery slope of removing the power entrusted by the founding fathers to the judiciary simply because the subject matter is technical.

There is no doubt that the system is a mess. By mandating the filing of claims within a short temporal window, we are seeing the Court of Claims trying to make sense of a scientific question that is far from settled. There s no easy solution. The interests of potential claimants, dealing with a relatively short period of limitations, have to be balanced against the interest of potential defendants (the industry and/or the Vaccine Compensation Fund) in a reasonably certain period in which they must face liability. But Dr. Offit advocates a lack of balance.

The debate as to how we fix the system is legitimate, and it is important. All interested parties deserve to be heard, but having a spokesman like Paul Offit does nothing to foster a reasonable discussion.

Dr. Offit, in addition to apparently not understanding the most fundamental aspects of the legal system (i.e., the difference between advocates and the finders of fact), continually resorts to utilizing the plaintiffs’ bar as a bogeyman to scare the bejeesus out of us all. He’s done it before in his well-accepted (an acceptance I don’t understand) book on the “Cutter Incident,” in which he deconstructs a very bad court decision from a few decades ago, and then waves it around as a cautionary tale while ignoring some very real corrections the courts took upon themselves.

He’s still using the same scare tactics. In the recent presentation to the pediatricians in Pennsylvania, Doc O said one of the dangers of the Poling “decision” is that personal injury lawyers will now be alerted ” to an area that might become “lucrative,” and they’ll take their claims to state courts.

Now, I am not a big fan of the plaintiffs’ bar. I’ve spent my professional life fighting those guys. I think I know pretty well what motivates them, and they’re not going to see a defense concession in a single case as being a green light on the road to riches. Those guys want easier pickings with a lot less waiting time. That’s why the vast majority of plaintiff lawyers who jumped on the bandwagon jumped off a long time ago.

But using scare tactics and misrepresenting his opponent’s position is what Paul Offit does best. He is finally acknowledging that the debate is broader than just the MMR or just thimerosal. But he does so by sneering about “shifting hypotheses.” Maybe I’m just a layman when it comes to science, but I thought the entire idea was to keep exploring until you find the truth. What we seem to be finding is that neither the MMR hypothesis nor the thimerosal hypothesis were wrong per se, but neither were right in an of themselves. Both appear to be part of a broader process that we are only starting to understand. Understanding the problem, however, may not be in Paul Offit’s interest.

My overriding interest in this question is the health and wellbeing of my son. That interest dictates that I constantly reexamine the validity of what I believe the truth to be, so that I may help my child. Paul Offit’s interest in seeing that the status quo is not disturbed seems to be a very curious approach for someone who constantly preaches science and the scientific method. Science, like the law, is not meant to be static. Our understanding must evolve as we continue to learn.

In a casual conversation, a pediatrician once told us that he really didn’t have the time to take a good look at issues like the potential connection between vaccination and the triggering of autism. Rather, he simply adopted the position of the AAP as a default. And that’s the same attitude demonstrated by some of the doctors who asked participated in the recent Pennsylvania teleconference. They wanted to know when they could get a “tear sheet” of talking points. One pediatrician bemoaned having to spend five minutes of uncompensated time whenever she was asked questions about vaccine safety. She said that Offit’s argument s would be convincing to “intelligent parents,” a comment which triggered a sarcastic, “yeah, good luck” from Doc O.

That’s the arrogance of Paul Offit. He refuses to use the words “intelligent” and “parents” in the same sentence. He refuses to acknowledge that lawyers and other laypersons are capable of understanding scientific explanations that come forth in a court of law. He refuses to acknowledge that he may not have a monopoly on “the truth.”

Paul Offit is an expert in the field of infectious diseases. Although one may disagree with his opinions in that field, he certainly deserves a respectful listen when he speaks on issues relating to his specialty. He is woefully ignorant, however, about autism, and he has demonstrated repeatedly a complete lack of understanding about the American legal system (which one would think is a lot easier to understand than infectious diseases). Why is it that he continually speaks as an expert on the issues he is least qualified to address.? Why is anyone taking this guy seriously?

ADDENDUM:

After drafting this post, I found out that Paul Offit will be on a panel for the 2008 US Court of Federal Claims Judicial Conference. The session is entitled “Vaccine Compensation Under the Act: A Mix of Science and Policy?,” and it appears that Offit will be the only physician to participate. Could the conference coordinator not have done better?

THE GATHERING

2008-06-05T21:54:00.003-05:00

Yesterday the news media devoted the lion's share of their resources to covering the big news about the Democratic primaries. It was almost as an afterthought that any coverage was given to other stories. One that deserved more attention than it got was a remarkable gathering in Washington: the "Green Our Vaccines" rally.

My friend, Ginger, was there, and has posted some remarkable pictures of some of the participants. Check it out.

Also newly posted is the video below from the rally, which comes from an unusual source: Autism Speaks (or someone associated with them). As did not endorse the rally, nor does it seem to want anything to do with the message that was being proclaimed by Jenny, Jim, and a few thousand of their friends. But they seem willing to at least acknowledge us. Although this video lacks the intimacy of Ginger's pictures, it gives a good sense of what the rally was all about, and for that I would give credit where it is due.

UPDATE:
Here's another video from the rally,this one from Lighthouse Studios, which has been a source of "good stuff" telling our side of the story. This one shows a bit more of Jim Carrey's address to the crowd.

GOIN’ HOME

2008-05-28T19:34:00.001-05:00

Last week we missed the annual Autism One conference for the first time in a few years (and by all accounts, it was a memorable conference). Instead, we were back down in New Orleans for a special family gathering. It was the kind of trip that helped provide a little perspective on where we were, where we are, and where we’re going.

It’s always enlightening to get reactions from people who don’t see our Little Rankster on a frequent basis. Those people aren’t privy to the daily struggle of raising an autistic youngster and the efforts to reverse the negative aspects of our son’s ASD. So they don’t see the small daily changes. But boy can they see the big changes that occur over the course of a year; and they did see them.

Then there’s the other side of that coin. Although we do our best to maintain protocols, trips like this mean some degree of interruption in the voo-doo we do-do. Add to that the inevitable gluten infraction, and . . . well, let’s just say we got a good lesson in the value of the biomedical track we’re on.

“Home” can be a nebulous concept. It doesn’t necessarily mean the place you came from. It may not even be a place. This latest trip back to New Orleans reaffirmed for us that no matter how much we love that city ⎯ and no matter how deeply rooted in our souls the city and its culture will always be ⎯ it is not our home anymore.

But even the city we now live in is not “home.” Our home is wherever we are doing the best for our family. Home is where we’ll be on the day when we’ll know that we have done all we can to give our son the best possible opportunity to make the most of his life.

We’re going home.

WHAT YOU DO UNTO THE LEAST OF THESE . . .

2008-05-18T14:05:00.002-05:00

A recent article in the Star Tribune, in the Minneapolis-St. Paul area, speaks to a problem that is far too common: a problem of interest to all families of autistic individuals.

The Race family in St. Cloud, Minnesota attends church services, Mass at the local Catholic parish in their case, as a family. Their family includes 13-year old Adam. Adam is autistic.

In 2005, the Roman Catholic Diocese of St. Cloud presented Carol Race, Adam’s mother, with an award, recognizing:

. . . her efforts to encourage families with disabled children to attend mass, she said. The award cited her “untiring efforts ... to educate and advocate for others who have children with disruptive disabilities such as autism and seek to participate as a total family at Sunday mass.”

What a difference a couple of years makes.

Last summer, their parish priest, the Rev. Daniel Walz, appeared at the Race’s doorstep with a temporary restraining order, intended to keep Adam away from services at the church.
It is beyond ironic that the Church, which adamantly would resist the jurisdiction of civil courts on issues of internal governance, seems to have no problem turning to those same civil courts when trying to add a little oomph to its internal decrees.

Carol Race was, to say the least, perturbed at the lack of understanding on the part of Father Walz:

“He said that we did not discipline our son. He said that our son was physically out of control and a danger to everyone at church,” she said. “I can’t discipline him out of his autism, and I think that’s what our priest is expecting.”

The Race family defied the order, and they are likewise defying a permanent restraining order that was issued. They continue to attend Mass as a family, doing their best to keep Adam’s occasional meltdowns under control. They have asked the Diocese to rescind the order, but the only response was a release described in the Star Tribune article:

A statement released by the Diocese of St. Cloud said the church filed the petition “as a last resort out of a growing concern for the safety of parishioners and other community members due to disruptive and violent behavior on the part of that child.”

“That child,” as the Diocese calls Adam, is as much a child of God as anyone who joins others to worship.

In the article, Rev. Walz describes the nature of the problems Adam’s behavior raises. It also provides the Race’s explanation of those behaviors. The family’s explanation has the ring of truth for anyone who has spent time around an autistic youngster, or who has taken the time to try and understand.

Could Adam’s parents have handled some of the “disturbances” in a better way? Maybe, but I’m not ready to make that call when I don’t know the complete background. One thing is sure, however; taking the Race family to court will not bring anyone ⎯ not the Race family, not the other parishioners, and certainly not Father Walz ⎯ any closer to the Kingdom of Heaven.

THE WILLINGNESS TO CONFRONT UNCOMFORTABLE QUESTIONS

2008-05-12T22:17:00.002-05:00

I’ve been on one of my blogging sabbaticals for a while. It’s not that there hasn’t been anything to write about; rather, it’s a matter of other things having higher priority than spouting off my opinions. As could be predicted, it took a condescending comment from Paul Offit to spur me to sit at the keyboard.

In an Associated Press report on the next test case in the Court of Claims, the reporter decided to get a quote from Doc O, the infectious disease guy who holds a vaccine patent and is a consultant for Merck (and, as is usually the case, those parts of his résumé were left out of the article). In an apparent reference to the fact that there is more than one theory being explored, Dr. Offit said: “I think that what’s so endearing to me about the anti-vaccine people is they’re perfectly willing to go from one hypothesis to the next without a backward glance.”

For those who aren’t able to recognize it, that statement is an example of what we call “sarcasm.” And what is he being sarcastic about? It seems that some of us have the temerity to constantly reexamine our opinions in the face of emerging science. I always thought the evolution of an idea lay at the heart of the scientific method, but apparently I was wrong. (Okay, that’s a little sarcasm on my part.)

Dr. Offit chooses to cling to a static concept, without regard to mounting evidence against that concept. It’s simply too uncomfortable for him to challenge his notions.

Contrast Dr. Offit’s smug attitude with the open mind of Dr. Bernadine Healy. Dr. Healy’s about as mainstream as it gets; she’s a former head of the National Institutes of Health and she’s a current member of the Institutes of Medicine. She’s hardly an antivaccine zealot. But in a recent interview with Sharyl Attkisson of CBS News, she stated her opinion that the question of a potential link between vaccinations and autism in genetically susceptible individuals is not yet settled and deserves serious study ⎯ study that has not yet been undertaken by the institutions charged with the protection of public health.

According to Healy, when she began researching autism and vaccines she found credible published, peer-reviewed scientific studies that support the idea of an association. That seemed to counter what many of her colleagues had been saying for years. She dug a little deeper and was surprised to find that the government has not embarked upon some of the most basic research that could help answer the question of a link.

The more she dug, she says, the more she came to believe the government and medical establishment were intentionally avoiding the question because they were afraid of the answer.

Dr. Healy has not formed an opinion that vaccines are definitely a trigger of ASD, or that vaccines are a major contributing factor to the current epidemic. She’s merely saying that there’s enough evidence to warrant a real examination.

As a commentator ⎯ albeit an amateur ⎯ on the issue of autism causation, I must admit that I’ve always found Paul Offit to be . . . well, endearing. Whenever I can’t seem to find anything to write about, Doc O comes to my rescue by saying something that just calls out for a comment. It’s nice, though, to have someone like Dr. Healy, who invites comment of a more flattering nature.

Check out an extended version of the interview with Dr. Healy to hear what a reasonable scientist sounds like.

WILL AUTISM SPEAKS LISTEN TO KATIE WRIGHT?

2008-04-04T11:44:00.000-05:00

It’s no secret that I’m not exactly a big fan of Autism Speaks. There is someone who has a more-balanced view of that organization than I have: Katie Wright. It is, of course, ms. Wright’s son’s regression into autism that gave birth to the organization. Her parents, Bob and Suzanne Wright saw a need and created what has quickly become the 900-pound gorilla in the room. The arrogance with which the organization has run roughshod over other organizations, autistic individuals, and just about anyone that doesn’t subscribe to their views has been nothing short of shameful.

Through it all, Katie Wright has remained loyal to her parents, even after they threw her under the bus for making public pronouncements on the issue of vaccines as a potential trigger for ASD. She has always been careful to separate the role of her parents from the influence of other officers and directors of Autism Speaks. I tend to think she underestimates Bob Wright’s influence on the organization’s direction, but she is certainly in a better position to know what’s in her father’s heart.

In a new post at Age of Autism, Ms. Wright again pays tribute to her parents, while calling Autism Speaks to task for ignoring the biomedical community. It’s an articulate statement that deserves to be read. Unfortunately, it probably won’t have an impact on those who really need to understand: the leadership of Autism Speaks.

FOR THOSE WHO THOUGHT WE GOT PAST 1984

2008-03-31T18:00:00.002-05:00

Courtesy of Ginger Taylor comes a dissection of Julie Gerberding's recent appearance on CNN, which seems to have been intended to reassure us all that the government is doing all it can to clear up the confusion, and that there is no danger. The CDC Director's "answers" were classic examples of Orwellian doublespeak.

I'm not the first to point out that the CDC's search for the cause of the autism epidemic, under Director Gerberding, has demonstrated all of the determination and doggedness of O.J. Simpson's search for "the real killer."

SICKNESS AT HOME AND AT THE CDC

2008-03-20T05:07:00.002-05:00

I’m not really up to a full post right now. I’m recovering from a few days of illness: chills, body aches, coughing. And no, I did not get a flu shot this year. Even if I had gotten one, however, it would have done no good. As you are probably aware, the CDC guessed wrong on the strain this year, and the current shot has not been that effective (which I suspect is more common than they admit). Besides, I don’t have the flu; I have flu-like symptoms.

Speaking of the CDC, check out what David Kirby has to say about Julie Gerberding’s reaction to the Polling case. He hits the nail squarely on the head.

Speaking of heads, there’s sickness not just in the Rankin house right now. There’s a real sickness in the CDC, an agency that’s supposed to be protecting our health. In my case, I got better with a few days rest and lots of fluids. The CDC’s sickness, on the other hand, will require drastic surgery: amputation of the head.

ADDENDUM:
Looks like someone else went down with flu-like symptoms. And unlike me, I have to think that he got his flu shot.

IMAGINE

2008-03-16T12:43:00.002-05:00

Okay, I realize I’ve been linking to Ginger’s blog a lot lately, but she’s been a lot more active at this than I have, and I rarely find anything to disagree with her about.

She’s just posted The Responsible Government Fantasy in which she imagines the press conference that would result if Julie Gerberding (Director of the Centers for Disease Control) would show an ounce or more of integrity. Ginger sees a kinder, gentler Julie giving a thoughtful reaction to the Poling concession, and actually reaching out to offer parents help.

Of course, it’s just a fantasy. As Ginger notes, “OJ looked harder for Nicole’s ‘real killers’ than Julie has looked for the causes and possible cures of autism.” Still, it’s nice to imagine a country in which the government actually has our best interest at heart.

One thing that’s missing from Ginger’s fantasy is an admission by Gerberding that the CDC, which is charged with the responsibility of promoting the vaccination program, might just have a conflict of interest ⎯ or at the very least a perceived conflict ⎯ with the role of determining vaccine safety. I imagine Julie standing at the podium calling upon Congress to create a separate safety agency, to be led and staffed by physicians with no ties to either the CDC or vaccine manufacturers (okay, that might be drifting a little too far into the realm of science fiction).

I picture Ms. Gerberding specifically calling for research into not just what individual vaccines and vaccine components might be potentially dangerous, but also whether numbers of vaccines and particular combinations of vaccines might pose a risk to our children.

Unfortunately, it’s just a fantasy. But just imagine if it were true.

Supermom

2008-03-15T10:50:00.002-05:00

Here's something else I found via Ginger. Jenny McCarthy's recent appearance on Canadian television is quite a sharp contrast to her appearance a few months ago on The View. When she's given a chance to say something without constant interruption and argument from the host, it's downright amazing how much substance there is to this woman. She's talkin' sense!

Hmmmmm

2008-03-15T10:16:00.004-05:00

Check out this recent post over at Ginger's Adventures in Autism. I understand there's no way to determine the veracity of the comment (one of the problems with net anonymity). And I'm not sure I agree that thimerosal is completely "removed." But the common sense of the comment's point is obvious. What passes for safety testing in the vaccine approval process simply does not measure the true risk, nor does it intend to.