IN RE: AAP v. ELI STONE

In case you’ve been away from the net lately, ABC is currently promoting a new lawyer show, Eli Stone. And the first episode promises to be memorable. The title character will represent a family suing a vaccine manufacturer, alleging that a toxic component in a vaccine triggered their son’s autism.

Generally I’m not a big fan of lawyer shows, because they tend to oversimplify things to fit into a one-hour time slot. Likewise, I think focusing on thimerosal ⎯ and the fictional vaccine component in the Eli Stone episode sure sounds like the regrettably non-fictional thimerosal ⎯ has been counterproductive. Instead of establishing the process by which various toxins can trigger autism, which I believe would assuredly lead to mercury and thimerosal as a major, and perhaps the single greatest, contributing factor, we have focused solely on that one “what” before we have established the “how.” This has allowed those who would fail to see the forest (i.e., the CDC, the IOM, the AAP, and, of course, the vaccine manufacturers) to hack at that one tree with half-truths and half-baked epidemiology.

Still, we must be on to something because those guys keep acting scared. When word got out about the premier episode of Eli Stone, the AAP (American Academy of Pediatrics) prepared an over-the-top letter of protest to ABC, filled with self-righteous indignation. They are demanding that ABC not run the show. They protest that the American public ⎯ you know, us idiots without medical degrees ⎯ will believe a fictional television drama rather than their doctors. That protest speaks volumes of how our country’s pediatricians view their own credibility ... or lack thereof.

Since none of us has actually seen the show, it’s a bit premature to talk about its merits or deficits. The AAP’s heavy-handed attempt at censorship, however, is in front of us and deserves comment and censure. But rather than reinvent the wheel, I would simply direct you over to Ginger’s blog, where my friend (as usual) has beaten me to the punch and done a far better job than I could.

JOHN STEWART: A FAN’S REMEMBRANCE

The word “fan” is defined as “[a]n ardent devotee; an enthusiast” with the derivation being from the word “fanatic” (The American Heritage Dictionary of the English Language, Fourth Edition. Houghton Mifflin Company, 2004). Of course, the word has taken on a more generalized meaning in which the devotion is not necessarily fanatical. I consider myself a fan, in the more casual sense, of numerous sports teams, individual athletes, actors, writers, and musical artists. But my truly fanatical interest has always been reserved for John Stewart. That’s why the news of his passing last weekend was like a kick in the stomach.

He was an incredibly prolific songwriter and recording artist, who is considered one of the pioneers of what came to be known as the “Americana” style of folk music. His songs were of America and Americans, a land and people for whom patriotism was neither blind nor mute. In one of my favorites, a song called “Survivors” from the vastly underrated Wingless Angels album, he tells us that we can and will endure, despite the “outlaws in office” that shatter our lives.

An irony he undoubtedly enjoyed was that for all his folk credentials, his best-known song was the Monkees’ hit “Daydream Believer.” For that song, the record company infamously decided that Davy Jones could not possibly sing the line “now you know how funky I can be,” so the word “happy” was substituted for “funky.” The change of that one word managed to render a great song utterly senseless. With characteristic good humor, Mr. Stewart was able to laugh about the bowdlerization of his work because “happy” worked just fine for him after the song shot to the top of the charts.

I first heard John Stewart’s unmistakable voice as a child on old Kingston Trio records lying around the house. Later, when I started collecting my own albums, I bought a copy of his Phoenix Concerts and was hooked for life. It is one of those rare live albums where the connection between performer and audience is palpable.

I was lucky enough to have experienced that live connection twice back in the eighties and nineties. New Orleans was pretty far removed from where most of his fan base was located in the West, so the opportunities didn’t come often.

The first time I saw him was in a reformed disco in the suburbs, called “Richie’s 3-D Lounge.” It was the most incongruous venue I could imagine for John Stewart, with its mirrors, disco balls, and tables spread out on a dance floor meant to be lit from below. And to top it off, he played before a “crowd” of about 15 people (including the bartender and the guy working the sound board). Still, he sat on a stool and played as if we were all sitting in his living room. It was an amazing performance.

The next time I saw him a few years later was at a French Quarter club called “Storyville” (the location is now Mararitaville for those who know the City). With that better location, I hoped he would draw a larger audience, and I suppose he did. I think I counted 23 people that night. A lot of guys with international reputations would have shrugged their shoulders and phoned it in. Mr. Stewart came out on stage, suggested that "we all room together next semester," and launched into an unforgettable set, including an encore.

Although I didn’t get each and every album he released (the number is estimated to be in the mid forties), I probably wound up with over half of them. He continued to release them on a variety of labels, each one containing brilliant lyrics set to a constantly evolving guitar style.

Just before he suffered the stroke that led quickly to his death, he completed work on yet another album. Reportedly, the recording included contributions from his friend, Lindsey Buckingham (who helped record what was to have been his biggest hit as a performer, “Gold,” back in the seventies). One of the new songs is entitled “I Can’t Drive Any More,” a nod to his recently diagnosed Alzheimer’s disease. He was determined to continue writing, recording, and performing as long as his mental state would allow.

It’s difficult for me to believe that the next album will be the last. Fortunately, he left a large catalog of music to discover, rediscover, and savor.

ADDENDUM:

After posting the above last night, I spent some time on You Tube looking at videos, and came across a couple I thought I'd share. The first was taken from a Kingston Trio reunion in the eighties, which was put together as a PBS fundraiser. John was at the peak of his career, and was given a solo spot in the show. He chose to do "Kansas," one of his older songs that had always been done acoustically. Here, before an audience of folkies, he performed it electric (and then some). For that occasion, it was an interesting choice lyrically, made even more interesting by his performance.



The second came from a performance last April, and it's really poignant. In the last couple of years, Mr. Stewart had aged tremendously. His voice, like that of his friend, Johnny Cash at the end of his life, had taken on a crusty aura. Although the Alzheimers may not actually have been diagnosed at that time, he was obviously frail. He was struggling with playing the guitar (and he had always been known as a fine guitarist). The song is "Mother Country," one of the tunes off of the classic California Bloodlines album, which marked the beginning of the style that came to be labeled "Americana."

If the first video was John's Dylan-goes-electric-at-Newport moment, this one is his E.A.Stuart moment. Any Stewartistas out there know what I mean; the rest of you will understand after watching the whole video. It's a brave performance.

A MEASURE OF JUSTICE

I have only mentioned Karen McCarron’s killing of her daughter, Katie, a couple of times on this blog. The more recent occasion was to respond to someone I considered a friend, who had taken me to task for not discussing something I really didn’t understand. The first time was to politely suggest that restraint might be called for in discussing the matter until we truly knew what happened. I still can’t pretend to fully understand it all ⎯ I seriously doubt I will ever come to that point ⎯ but it seems appropriate to say something now.

Like most people in the greater autism community, I followed the news reports about the trial, but my experience in litigating cases (including some of a high-profile nature) taught me that the press sometimes misses nuances. So I don’t always trust the press. But I do trust juries. Although juries occasionally get it wrong, they get it right far more often.

People who serve on juries, almost without exception, take their task very seriously. That’s not to say that judges do not; most do. Jurors, though, listen with ears that have not heard it all. They watch with eyes that have not become jaded. Most importantly, jurors infuse a human element into the proceedings; they understand that their decision will have an impact on everyone involved. It is that human element that adds an extra measure of justice to the law.

In this case, the jury found Karen McCarron guilty of murder. That jury heard all of the evidence presented by the prosecution and the defense. They were able to observe the manner in which the witnesses testified. Their decision is entitled to respect. Moreover, all indications point to their having got it right this time.

There were two things reported in the press during the trial that stood out for me. The first came in the testimony of Paul McCarron, Katie’s father. This is how the Pekin Daily Times described it:

After Paul and Katie spent several months in North Carolina, where Katie received therapy, both Paul and Karen decided to move Katie back to Morton. While Paul was in North Carolina finishing his work as an engineer with Caterpillar Inc., Karen brought Katie back.

However, prior to Katie’s return, Karen asked Paul what he thought about putting Katie up for adoption.

When asked by Johnson how he replied to this, Paul said, “No way in hell.”

As a parent, I immediately identified with Mr. McCarron’s sentiments. There is no way in hell I would ever disown any child of mine, autistic or neurotypical. Karen McCarron’s idea of doing that to her child displayed a complete disconnection to her daughter that I cannot fathom. She committed the worst sin a parent can commit; she lost hope.

Of course, the defense in this case was based on mental illness. And the presence of mental illness seems pretty likely. Did it stem from the inability to accept a child’s disability after trying so hard to have a family (the Daily Times report cites two prior miscarriages)? Was it because Karen McCarron went off of her medications, or could it even have stemmed from being on the medications in the first place? Although it is human nature to speculate on such things, at the end of the day the cause of the mental illness is irrelevant. Whatever role mental illness played in Karen McCarron’s actions, the illness does not absolve her of legal or moral culpability for the murder.

I’m not sure what standard Illinois recognizes for an insanity defense, but I assume it is either the traditional McNaughton rule, or something similar. This is what I previously wrote on that subject:

There have been many comments made in various places about the mental state of the mother, but that does not begin to provide an answer about her moral culpability, or lack thereof.

As a very general statement, I think the McNaughton rule, recognized by most American jurisdictions in determining insanity as an exculpatory defense, stands as one of the rare instances in which law and morality actually match up. The test is whether an alleged perpetrator could appreciate the distinction between “right” and “wrong” at the time of an otherwise criminal event. That test is not satisfied if the defendant was unaware of a specific law, or if the defendant felt a mere moral justification. Rather, the rule tests whether the specific individual was intellectually, mentally, and emotionally capable of understanding that the ethics and mores of society hold the act to be wrong. My personal feeling has always been that any person who is capable of that understanding is under a moral obligation to seek help if he/she feels that he/she may have difficulty controlling an immoral or illegal impulse.

That leads to the second telling moment of the trial, as reported in the Associated Press:

In a videotaped confession played in court Thursday, McCarron said she began having thoughts of hurting her daughter a year before the May 2006 slaying but put them out of her mind. On the day of the killing, though, the thoughts were stronger than ever.

“They were so intense,” McCarron said.

The video continued with Karen McCarron’s description of the murder ⎯ a description that is detailed, graphic, and horrifying. Then came the kind of question that good, experienced investigators ask:

Interviewers asked McCarron if she knew what she did was criminally wrong.

“I have enough education to know that,” she answered.

The jury got it right. Karen McCarron is guilty. And it’s important that we in the “cure” community say it.

It’s important because the excuses Karen McCarron threw out in that videotaped confession were themes that are identified ⎯ correctly or not ⎯ with us. She said she felt guilty over the vaccinations Katie received and she was distraught because the interventions she used failed to deliver a child free of autism. And it’s important for us to say it because, after the murder occurred, many in our community questioned what external problems may have been a factor. Many were folks who were struggling to understand how someone they considered a friend could have committed the worst of crimes. Well, we may not fully understand the “why,” but we now know that a lack of services had nothing to do with this tragedy.

This murder occurred because a mother stopped seeing humanity in her child. She couldn’t see her child at all: only the autism. Despite what our friends in the neurodiversity movement may say, I refuse to believe that such a failure is common among cure-oriented parents. But if that failure is part of any parent’s thought process, it is something we must all fight.

After the verdict, Paul McCarron released a statement that has found its way onto several sites. This is how it ends:

I ask all parents and especially those of children with disabilities to ALWAYS love your children and be proud of them. Cherish every moment you have with them. Love, patience and tender efforts are the best therapies.

Indeed. I have said before that the love of a parent is the most important intervention for an autistic child. That love must be our guide in all other interventions. That love must keep us honest so that we may constantly examine our path anew lest we put our children in harm’s way. That love must give us hope to persevere.

JB OUTS THE INSIDERS

J.B. Handley has always let it be known where he stands. He has been willing to put his money where his mouth is by founding Generation Rescue, and by helping to give birth to the Age of Autism site.

Over the last couple of years, J.B Handley has acquired the reputation of being a bull in a china shop. I guess that comes from being pissed off about what happened to his son ⎯ about what happened to a lot of our kids.

That pissed-offness has led him into being . . . well . . . blunt. It’s a directness that has grown on me over time. There’s a distinct absence of what one normally finds left behind by bulls.

He gets mad at things that make me mad as well. One of those things is the incestuous nature of the mainstream scientific community: a nature that is designed to maintain the status quo, even at the expense of our children. In a recent post at the Age of Autism, J.B. details the kind of relationship that should raise the eyebrows of even the most ardent supporter of the mainstream medical establishment.

It seems that Dr. Joyce Chung, the newly appointed Executive Secretary of the Interagency Autism Coordinating Committee (IACC), is married to none other than Roy Grinker, the anthropologist who, with the help of a generous grant from our “friends” at Autism Speaks, has published a book telling us there is no autism epidemic.

So let me get this straight. The ascending autism tsar who will have enormous influence on how government funds will be doled out to the NIH and others, shares a home and her life with a guy who probably doesn’t see much point in researching potential causes and treatments. Did they think that nobody would notice?

Why am I not surprised?

ARE YOU GOING TO BELIEVE YOUR OWN EYES OR ONLY WHAT YOU’RE TOLD?

The other day, I came across a story from The Shreveport Times, discussing the biomedical interventions of one parent making progress utilizing biomedical interventions with her autistic daughter. Although supplements and chelation therapy were mentioned, the focus was on the gluten-free/casein-free (GFCF) diet. It was a relatively balanced report, which noted that even GFCF would necessarily help every child.

What interested me were quotes from experts outside of the DAN! world.

One occupational therapist, Suzanne McMillan, had this observation about kids on the GFCF diet:

McMillian has noticed marked changes in some children on the diet and others not so dramatic.

“But one thing that is noticeable is if they’ve been on the diet for a consistent amount time and then eat something off the diet, you can tell,” she said. “I do recommend they talk to their (regular pediatrician); that’s the responsible thing to do.”

Those comments, no doubt, struck a familiar chord with every parent who has noticed positive results from the diet. Gluten infractions can ruin a day.

Although Ms. McMillan is correct that any part of an overall biomedical plan, including implementing a GFCF diet, should be subject to medical guidance, I have to question whether most pediatricians are really going to consider doing anything but roll their eyes and sigh. Still, the Shreveport reporter managed to find one, Dr. Margaret Crittell, who seems to have an open mind:

But when Kelly’s then 2-year-old daughter came in for a visit after about a week on the diet, Crittell wasn't expecting what she saw.

“I called her name and she looked at me and started interacting with me,” Crittell said. “Before she’d always looked past me and there was no interaction. It was interesting to me and hopefully more research will be done.”

While anecdotes are not definitive, overnight improvement is observed often enough that serious attention must be paid. Unfortunately, not every physician is as willing as Dr. Crittell to challenge the conventional thinking that pervades “mainstream” medicine. The article quotes an academic gastroenterologist as saying he “believes any positive changes that parents are seeing may be answered by the placebo effect.”

Huh?!? Does he really think a child between the ages of two and four has enough understanding of the reason Mommy and Daddy are feeding him/her different foods that the child will think he/she should be feeling an easing of autistic symptoms? Can the sudden onset of speech and social engagement ⎯ which has been noticed at various ages upon starting the diet ⎯ be just a trick of the mind?

I grew up in an academic family. I’ve known enough people with advanced degrees to know that the educational process is not necessarily a vaccination against ignorance. Still, I shudder when I see such ignorance and closed-mindedness running rampant.

A little skepticism is not a bad thing when determining a scientific question. But to assume something is not genuine because properly designed controlled studies have not yet been performed is the height of ignorance. The self-proclaimed skeptics love to say that some of our minds are so open that our brains must be falling out. It’s a cute little joke. Still, one has to wonder how anyone can see when they are keeping their eyes shut because there haven’t been five replicated studies to prove that a little light helps a person see.

As I often say, there are none so double-blind than those who will not see.

THANKS, LES

Way to Geaux Tigers!

DEFINING AUTISM

The inability to agree on a definition of autism has always fueled the debate over appropriate responses to Autism Spectrum Disorders. The truth is that one could easily define autism in as many ways as there are autistic individuals.

I have occasionally read the musings of Donna Williams, a/k/a “the arty autie.” Although our views rarely intersect, I have usually found her to be thoughtful and a good writer. Last week, I came upon her latest piece, What is autism? Beyond the symptoms and stereotypes. She hits this one out of the park:

In my view, autism is NOT ONE CONDITION and hence there is no one-size-fits-all approach which will best fit ALL people diagnosed with autism or Autism Spectrum Disorder (ASD).

Ms. Williams refers to the constellation of autistic manifestations as a “fruit salad,” the ingredients of which are sometimes inherited and sometimes acquired. Leaving aside the question of how much is inherited and how much is the result of external factors ⎯ and that is likely to differ with each individual ⎯ the focus turns to our response. Ms. Williams seems to believe, as do I, that the appropriate response depends upon the manifestations:

What determines the abilities and progress of any person with autism, is how the fruit salad is respectfully managed based on solid understanding of those components. Some aspects of an ‘autism fruit salad’, in some people (and may not be present in all for them to be equally ‘autistic’), will require treatment, others management, others adaptation and some only understanding, respect and acceptance.

I’m not familiar enough with Ms. Williams’ views to speak for her. Based on her background, though, I can surmise that she does not approve of many of the “biomedical” or “alternative” interventions many of us believe are appropriate in the individual cases of our children. As a statement of general principle, however, I could not agree more with her on the nature of ASD, and the spirit with which we must formulate a response.