Legal Standards, Science, and the Cause of Autism
March 27, 2008 by Kristina Chew, PhD
Filed under Health
In determining what causes autism, you would think that scientific evidence would have the final say. Just in the past year, there has been more and more evidence refuting a link between thimerosal and rising autism rates, and more and more studies pointing to a complex web of genetic factors in autism. And yet, again and again, the public’s attention has been drawn to legal decisions in cases involving an autistic child and claims of injury by a vaccine, as in the cases of Michelle Cedillo (whose case was brought before the “vaccine court” in June of 2007) and Hannah Poling. The Vaccine Injury Compensation Program (VICP) was specifically (as noted by Orac)
designed to compensate any injury that could be attributed to vaccines, with a standard of evidence that is a legal, not a scientific standard that’s been likened to “50% and a feather.”
Thus, when the government recently conceded that Hannah Poling’s underlying mitochondrial disorder was aggravated by vaccines with autism-like symptoms resulting, this judgment was made according to a “legal, not a scientific standard.” To say that “the government has conceded that vaccines cause autism” is inaccurate and a hyperbolic over-simplification of a complex case.
Legal and scientific standards have also crossed paths in the figure of Dr. Andrew Wakefield who, along with two colleagues, published a 1998 paper in the Lancet linking the MMR vaccine to an increased risk of autism. The Lancet has since disowned the paper and Wakefield is to appear before the General Medical Council (GMC) about “alleged irregularities in his research methods,” as the March 27th BBC News notes. Specifically, Dr. Wakefield (who has sometimes been portrayed as a crusading figure sticking up for the “litle guy” in Eli Stone-ish fashion) faces these charges:
- He is “accused of violating ethical guidelines, and of acting against the clinical interests of the children who took part in his trial.”
- He is alleged to have taken “blood samples from children at a birthday party while offering financial inducements.”
- He is accused of “acting dishonestly in failing to disclose to the Lancet that he was advising solicitors acting for parents who had alleged their children had been damaged by MMR.”
- He is said to have failed to “disclose his involvement in a patent application for a potential single measles vaccine.”
The GMC hearings, as the BBC News states, are not considering the “safety” of the MMR vaccine.
I’m not entirely sure as to why the legal and the scientific—in the vaccine court cases of Michelle Cedillo and Hannah Poling—-are so readily confused. Certainly there have been numerous court cases in which the claimant has won a large financial award from a big (pharmeceutical) drug company (as in the case of the painkiller Vioxx which was manufactured by Merck; consider also this one involving the state of Alaska and Eli Lilly over the schizophrenia drug Zyprexa). Further, more and more people, and certainly parents, have taken medical issues into their own hands. Thus, “maverick” figures like Dr. Wakefield and the TV drama character Eli Stone (wait! that’s the same “Eli” as in “Eli Lilly”……..) are well-positioned for frustrated parents, patients and consumers to rally around in the search for answers. And if one can “prove” by whatever means (be they scientific; by they legal) that one’s child was “damaged” by some specific drug or pharmeceutical product that was supposed to make a child healthier, how else to receive “compensation” than via what can be called “financial aid”?
One result of the under-acknowledged transformation of scientific issues into legal ones that are decided in a courtroom is that medical professionals and scientists have to watch what they say with exquisite care. They must be ready in the blink of an eye to get their message out to the media. Consider the transcript of a March 6th question and answer session between reporters and officials from the Centers for Disease Control and Prevention (CDC), the National Institute of Mental Health (NIMH), and the FDA. About.com reviews the transcript (which can be read here); I was struck by how carefully CDC officials like Dr. Julie Gerberding, Director of the CDC, and Dr. Edwin Trevathan, Director of CDC’s National Center for Birth Defects and Development Disabilities, and Dr. Thomas Insel, Director of the NIMH, chose their words. Dr. Trevathan is a “pediatric neurologist whose expertise includes [mitochondrial] diseases and disorders” and he states:
When we talk about mitochondrial disorders, what we’re really discussing are a group of rather heterogeneous genetic disorders. They are disorders of function of the mitochondria. And we often remember mitochondria from grade school or high school science as the powerhouse of the cells. And, in fact, that is a key thing to remember because the children who have mitochondrial disorders or these genetic disorders can appear normal initially.
……..
The children who have mitochondrial disorders even though they can appear normal initially are actually somewhat predestined to have a regression of neurological function when placed under stress. And that makes it extremely difficult for parents, of course, to watch their previously normal appearing child suddenly deteriorate. And although most children with mitochondrial disorders do not have autism they have other neurological manifestations such as severe epilepsy or severe problems with movement, the one thing they tend to have in common is that they’re normal appearing in spite of their underlying mitochondrial disorder until they exhibit signs of the disease when they’re placed under severe stress.So at this point, we know quite a lot about how mitochondrial disorders can affect the brain but we still have a lot that we need to learn. There’s much research that needs to be done. But, I think, we do know enough to know that there are multiple different sources of biological stress for children with mitochondrial disorders including, I might add, some of the infections that we immunize against, such as pertussis or flu.
So that’s worth keeping in mind I think in this discussion. And, I think, it’s also worth noting that most children with autism do not seem to have a mitochondrial problem. And so this association between mitochondrial disorders and autism is actually probably relatively rare. But the association between mitochondrial disorders and severe brain damage and dysfunction is one that is not as rare and is actually quite important.
Dr.Trevathan emphasizes that any claims of a higher prevalence of mitochondrial disorders in autistic children are “really more a hypothesis than a statement of fact.”
A hypothesis about vaccines and autism—like that put forth by Sallie Bernard et al. in 2001 about autism as a “novel form of mercury poisoning“—-is enough for Evidence of Harm author David Kirby to continue his speculations about children who are “potentially at risk” to “regress into autism” as he does in today’s Huffington Post. Kirby here continues his campaign to “rebrand” autism as some other neurological/mitochondrial/etc. disorder that vast numbers of children might be “at risk” for. Once again, Kirby and those who keep talking about a vaccine/mercury link continue to distract attention away from the needs of actual autistic children and adults here, now, and today.
In view of which, I wish to insert a note about my own actual autistic child. For three months, he’s been practicing the measure of music in this photo, along with some other measures that include notes with and without sharps. Knowing when to play a sharp—as indicated by the sheet music—requires quick thinking, hand/eye/brain coordination, and remembering what a sharp is (play a half-note higher). After lots and lots and lots of practicing, Charlie has been playing the four notes in the photo, and a few more sequences, perfectly, on his own.
And his smile, and how excited I was to see his fingers move over the notes tonight—this is a happy feeling so great it could be illegal. For it is something other than any science could or need prove.
Apropos NOT of Hannah Poling but of Charlie’s musical interest — congratulations!! Our Tommy plays clarinet, and is one of the few kids in the world who doesn’t get bored with practicing or prefer to play video games!!
And on a related “note” (LOL) — it turns out that Tom has perfect pitch, and a few British studies suggest that folks with autism are MORE likely than most to have that gift. You might ask Charlie’s teacher to try to figure out whether he does, too. If he does — he may be able to learn to play by ear.
I can’t tell you how cool it was the first time Tom’s teacher played a piece for him, and he just repeated it note for note and rhythm for rhythm — I literally teared up!
Lisa (autism.about.com)
Regarding music: I’m excited for Charlie’s new love for the cello. I was a cello major in college although sadly stopped playing after my senior recital because of severe stage anxiety (and an ironic unfamiliarity with xanax). The world needs more cellists so I’m so glad he’s playing it.
Regarding the other more delicate issue. One thing I find ironic is that often the rejection of the evidence against the vaccine-autism link is based on the general idea that ‘all those researchers and people at CDC get paid by the vaccine industry’ so the data is suspect (I’m yet to see a clear link between these researchers and the pharmaceutical industry). When the person who led the crusade against vaccines is the one with the most clear and direct conflict of interest. Nestor.
“this is a happy feeling so great it could be illegal.”
I thought that Jim was the novelist in the family:)
If you addresssed your kids’ need to be cured, he might have been playing those notes in a matter of seconds, not months. Wake up!
I think playing in orchestra has helped my daughter. She has to be alert to the pace and timing of the other kids, and watch the music teacher for cues. We had a great time watching their 5th grade concert this week. I’m glad your Charlie likes music-I wonder if he will find it as a way to express his feelings, when words won’t come?
@Ruth,
I think music already is such a way to express his feelings!
@El Senor,
Here’s a previous post regarding cure. We did a lot of the DAN! protocol when Charlie was younger. A family we know has been seeing Dr. Bock for their son (they’ve been chelating for about 6 or so years).
@alyric,
maybe the music is bringing out my inner novelist!
@Lisa Rudy,
just came back from visiting Charlie at school—-another student sang “My Country ‘Tis of Thee” over the loudspeaker and he sang the whole thing back perfectly, and in a different voice than he speaks with. I suspect he has perfect pitch; it has helped to have a visual aid (the music book). Fabulous about your son playing clarinet!
@Translating Autism,
Do you still play?
Another friend was a cellist and had to stop due to tendinitis. She was a Spanish professor for awhile.—- Have noted the same irony about the supposed Big Pharma-CDC “connections.”
Kristina,
I really get frustrated when bloggers like David Kirby completely misrepresent the facts in order to suit whichever argument they’re making at the moment.
I touched on the problem with people like Kirby in my article on functioning levels of autism ( http://wrongplanet.net/article365.html ).
I really took issue with the claim that most people with autism would not be considered ‘high functioning’ when most recent studies have found the opposite to be the case.
-Alex
I have read blogs that say a DSM-IV diagnosis of ASD is the “New MR” or the “New Schizophrenia” putting into questions about current studies concerning “high functioning”. Not to mention the fact that “functioning” isn’t defined in any terms in the DSM-IV, so it cannot be directly correlated to intelligence alone.
Kristina, great reply to El Senor!
I don’t know if my son will take to playing any instruments, but he certainly can sing well and has perfect sense of tempo. I’m going to give him a lot of incentive and expose him to great music and singing to see where he goes from there. Right now he’s very young so all I do is, for instance, while listening to a good song on the radio, I ask him, “can you sing that?”, and he sings back – “Roooooooxaaaaaaaaanne… You don’t have to put on the red light…” Or… “I don’t know why you say goodbye, I say hello, oh oh, helloooooooooooo…
@Leila,
Just being a magistra……
Call and response songs sound great and glad you mentioned the last one! One of Jim’s and Charlie’s favorites is the simple and surefire “We love you Charlie, oh yes we do, we love you Charlie, you know that’s true”—-this is the tune I think:
http://www.youtube.com/watch?v=GlgHWHy3MsA
We sing the “We love you Patrick” song and he loves it as I’m sure Charlie does as well. Patrick does a bit of piano but has recently shown interest in the fiddle. Problem…mom does not know how to play string instruments. So I’m on the lookout for an, well, openminded teacher.
Kristina, this is cute! One song that I’ve been using as a “conversation” with Chris is “I have lots of feelings, and so do you/I have lots of feelings/It’s crazy but it’s true/Sometimes I feel ____/Because I ______. It’s great because he has fun singing and he learns about expressing feelings at the same time.
Leanne, are there any music therapists for autism in your area? Another idea would be getting a video with lessons. Many autistics learn well from TV.
We talked to therapists about instrumental lessons, but they really didn’t want to do it. We got lucky with a young music teacher just out of college who was willing to give teaching Tommy a shot. She took him all the way from shoving toys into the bell of his clarinet to playing Eine Kleine Nacht in front of an audience of 100 at a recital! By the time we moved, even the best teacher in town was willing to take him on.
Lisa
In the case of the most recent Kirby post–interesting stuff but unfortunately from a lot of unsourceable people with a lot of speculative “ifs”. Do I think that this should be looked into further? Yes. Do I think that the speculative post is the basis for predicting the conclusions? No. A little data would be nice.
As noted, the way more interesting item is Charlie’s progress with the piano–those sharps aren’t easy, good for him!
Kristina,
Has Dr Bock’s treatment helped your friend’s child?
Alex,
People who have Asperger’s are not autistic.
@El Senor,
A number of people who have Asperger’s whom I know refer to themselves as autistic.
Regarding my friend’s son—-it is hard to say. Last time we saw him out here on the east coast, our friend’s child looked washed out and did not want to walk, and ended up being carried a lot (he is the same age as my son, and will be 11 in May). Our friend’s son was apparently getting over a cold; he is, as he was when we met him as a toddler, autistic.
@Lisa Rudy,
“By the time we moved, even the best teacher in town was willing to take him on.”
We’ve encountered the same hesitance when bringing up music lessons for Charlie. Everyone notes that many autistic kids like music, but seem less certain about actually teaching a child to play an instrument, read the notes. But when the time is taken…..
@Regan,
Agreed about Kirby—-you wrote that “In the case of the most recent Kirby post–interesting stuff but unfortunately from a lot of unsourceable people with a lot of speculative ‘ifs’.”
And also his rhetorical stance of “why don’t people just get it” and “it should be so obvious”—I am wondering how his arguments and accounts of “evidence” would sound, with a different sort of tone in his writing.