Field of Science

Autism, Lupron, the Geiers, and what can science do about emotions?


Is it a huge surprise that when emotion and science are conflated, the outcome is never good for science? Any step forward in a field of science that triggers a strong emotional response in the audience will encounter stumbling blocks aplenty. In some cases, advances run up against impenetrable walls, each brick mortared with the unyielding power of fervent emotion. With global climate change, scientists--and the news media--have done themselves no favors by emphasizing the terrifying potential outcomes. Entire cities swallowed by the sea! Droughts! Famine! Biblical flooding! No hope! Who wants the shit scared out of them like that? Is it any surprise that people resist these doom-and-gloom warnings, insist that the science is wrong? It's an absolutely predictable fear reaction.

Take vaccines. Raise your hand if you've ever in your life looked forward to a shot. I know that with each of my children's visits to the pediatrician for shots, I cringed. Watching those little fat legs exposed to those needles...it releases every primordial maternal fear I have. I close my eyes, speak soothing words, and watch hawkeyed for several days for any sign of an adverse reaction. So imagine how you'd feel if the news media announced one day that those very shots, the ones that make you squeeze your eyes shut and bow your head over your child's, listening to the screams...that these very shots intended to be protective might cause even more harm than the typical "adverse reaction" warnings? What would your reaction be? Already at the tipping point, many parents tipped right over and became firmly anti-vaccine.

Those walls of emotion are almost impossible to break down once they've been erected. Science, with its facts and its studies and its jargon, doesn't have what it takes to poke holes in that monolith of fear or anxiety. That's where pseudoscience comes in. And pseudoscience, my friends, with its own soothing words and easy promises, gives people exactly what they want. It never frightens them away from what it offers, although often, pseudoscience may certainly rely on trying to frighten people toward it, holding open its arms and enveloping the susceptible consumer--and that consumer's wallet--in its shameless embrace.

And with the word shameless, I finally get to the point of this post: The Geiers and their "Lupron protocol" for autism. As shameless as they come, Geier pere was just relieved of his medical license, and from what I can tell, the two--the son has, they will tell you, a bachelor's degree in BIOLOGY, people--the duo is on the hot seat. The license suspension, which described the good doctor as being "seriously intellectually dishonest," was a scathing indictment from beginning to end.

What was their crime? Manifold, indeed. Lupron, the product they marketed in their lucrative cottage industry, is a powerful hormone mimic with the ultimate effect of shutting down testosterone production (in males) or estrogen production (in females), indicated for very specific uses. Only one of those FDA-approved indications relates to children, and that's for children exhibiting precocious puberty. The criteria for precocious puberty include puberty onset before age 8 for girls and before age 9 for boys. The Geiers appear to have ignored all clinical indications and even applied the drug past the manufacturer's recommended cutoff age. According to one source, an 11-year-old girl under their "therapy" underwent menopause, her body battered by a conflicting barrage of hormone treatments.

The 11-year-old girl, who began menstruating at the age of 10 years, most likely underwent chemically induced menopause with her Lupron therapy. This girl was also treated with "low dose birth control pills," presumably in conjunction with her Lupron therapy. The rationale for prescribing OCPs with Lupron in the 11-year-old girl is not stated by the applicants. (I'm out of my medical territory here, but I've only heard of prescribing Lupron with OCPs in the setting of infertility therapy.)

That is horrifying.

The Geiers constructed a bizarre and insupportable mechanism for arguing for the use of Lupron in autism. Age of Autism, that trumpet for any pseudoscientific cottage industry related to autism, called it "A Really Big Idea!" The Geiers' big idea was basically a set of alleged hypotheses related to testosterone, mercury, and autism and their own "personal observation" that 80% of patients in their clinic who had autism also exhibited precocious puberty. In a biochemistry whiff that would be hilarious if the upshot weren't so harmful, they weave in a square dance between testosterone and mercury that somehow keeps chelation from working properly. In other words, bring on the poisons, people!

Enter the Geiers' "Lupron protocol." Remember that its only indication in the pediatric population is for precocious puberty. The criteria for prescribing Lupron for precocious puberty include measures of gonadotropin releasing hormone, bone age that is at least one year beyond chronological age, and a number of tests for rule outs and differential diagnoses. In other words, just looking at a child and thinking, "Hmmm....looks pubertal," doesn't cut it.

Even more so, looking at a child and saying, "Hey, these Baron-Cohen people think androgens might play a role in autism and (insert wild-ass musings here) so if we block testosterone, everything will be ALL better!" doesn't cut it, either. Speaking of cutting, Lupron is a drug used for chemical castration. I know. Let's inject that into our children every day for no reason.

Want to know how significant the effects of this drug can be? It can only be administered by a physician. I guess the former Dr. Geier can't do that any more.

Post-marketing surveillance--meaning after the drug came into use for the sole pediatric indication--revealed adverse events that included pituitary apoplexy. Adverse events observed during clinical trials were peripheral vascular disorder, vision problems, goiter, feminization, accelerated sexual maturity, growth retardation, edema, hirsutism, and as is usual for such lists, a host of other reported events. Each of these reactions was considered to have been related to the drug.

The walleyed nuttiness of this idea didn't stop people from turning to the Geiers, and it didn't stop people who claimed to be scientists from citing their papers when it suited their purposes. In other words, a mix of worried parents, Age of Autism boosterism, and self-interested scientists turned the Geiers' cockeyed ideas into a fruitful little industry of Lupron administrations to hapless, helpless autistic children. The long-term effects of this drug on these children are not known. What is known is that people who would parse to the last molecule every ingredient of a vaccine accepted daily injections of this powerful hormone for their children without an iota of clinical evidence to back up its use.

Even in the face of a backlash against the Geiers' practices, parents stood up and defended them. Typical comments from the Chicago Tribune's piece on the license revocation, all reeking of conspiracy theory, the sine qua non partner of fear:
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I see an awful lot of similarities in Maryland's effort to remove Dr. Geier's medical license and the highly successful effort to disbar UK's Dr. Wakefield. Indeed, the only thing that appears to have changed is the names involved:

Both Wakefield and Geier have provided treatments to treat the "physical" gastrointestinal problems of children with autism .. causing outrage among main-stream medical professionals who have long denied treatment of a child's physical "gut issues" .. preferring instead to dismiss the often bizarre behavior caused by painful "gut issues" .. as simply a symptom of autism.

Wakefield's chief accuser was a non-descript "investigative reporter" Brian Deer. Geier's original accuser was reported to be some fringe "neuro-diversity blogger".

Wakefield was prosecuted in the media by "The Lancet", Geier prosecuted by the "Chicago Tribune".

NONE of the patients treated by Wakefield or Geier are among those accusing him of mistreatment of their children.

This reeks of another "witchunt" designed to "kill the messenger" .. because his "message" is proving troublesome for the powers that be.

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They used Wakefield as a scapegoat so I guess now they figure they need another scapegoat in the US. Health officials, ddoctors, drug companies and the like will do anything to to be able to continue with their vacine agenda which is moving like a fast train and running down children all the while. For them to admit that vaccines are not safe for everyone and can cause autism and other health issues would be impossible at this point in time. So dragging down a few doctors who know what they are talking about is easier. It is so obvious what the media has been doing for years--taking sides and promoting these groups and especially the drug companies. However, the autism community is not going away. Autism won't go away and will only get worse. Soon all of us will have to support 800,000 children who will move into adulthood in the next few years.

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Why did these parents turn to the Geiers and away from the desperate attempts of science's representatives to present facts, urge reason, encourage a balanced consideration? Why do people continue to defend their crimes against their patients? Because people don't like to have the shit scared out of them. Because people don't like to feel patronized, and many science-originated communications have exactly that tone. Because people don't like to feel lost and stupid, bewildered among the jargon. In other words, because science communication from those in the world of science in general kinda sucks.

The fact that emotion prevails over science is not new. The news media in the Web 2.0 world know that. Look at headlines. They get their clicks with emotion. People's gut feelings direct their eyeballs, guide their mouse hand, trigger the click. That is the power of emotion in action. That is the power against which science, with its slow build-up of facts, its rationality, its lack of fireworks, must battle. Or...co-opt.

Some science communicators get that and then go too far for the clicks and the attention. Announcing an "alien life form" here on Earth. Sensationalizing every new finding ("This will kill you! This will heal you! Don't eat that! Eat this!") traps science communicators in exactly the same way that the sensationalism traps the reader. In the end, all we're left with is that impenetrable wall of emotion. And people like the Geiers who get that. Who prey on parents...and autistic children.

Communications from science have a long history of dessication, mummified words wrapped in incomprehensible jargon. Even using the first-person form was considered gauche until the last decade. What science needs, now more than ever, is personableness. People like Andrew Wakefield and the Geiers gain their standing not because of stellar scientific practice (um, duh, I know) but because of their outward appearance of empathy. Of "I am here to help you." Of "I feel your pain."

Feeling the other person's pain--and fear and self-esteem and desire to understand--is key to bringing science to the people and the people to science. Science, despite perceptions and monolithizing, is not a dry, emotionless machine devised from impenetrable facts. People are the parts of that machine. Let's put a human face on science along with some real human understanding. After all, in the end, we're just people, talking with other people, asking them to love us...and understand what we're saying.

12 comments:

  1. Brava :)

    - hj

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  2. Weren't all the aformentioned "scientists", schooled in medicine or biology? Why did it take years for them to be nabbed? That doesn't say so much for scientists as a whole. They don't police their own. Errors are a closely guarded secret.

    Just because they might have been mad scientists...

    RE: autism, what has science given us? Bettleheim, Lovaas (a veritable GOD who guides even education today). I mean...pfffttt...like that's real neat. Cures? We don't need no stinking cures...

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  3. well said. I cannot comment further and contain my rage on this matter.

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  4. r.b., yes, they were, and when they came forth with their unsupported and/or overstated ideas/findings, the scientific community quickly called them on it. Indeed, that community has been calling them on it for nigh on a decade. As I noted, it's difficult to break down an emotional wall once it's been built. As you can see, they were, as you put it, nabbed. That wasn't because of a public outcry against them. That was because colleagues and oversight committees related to their fields/practice did it.

    Errors are not a closely guarded secret. Not sure where you got that. If anything, it's likely a matter of great glee to many scientists who find errors in a colleague's work, especially if said colleague appears to be a charlatan who manipulates data. There is undoubtedly a lot of one-upmanship going on. Countering findings is not something to hide under the rug in science. It's something to publish.

    As for not policing our own, I refer you to http://retractionwatch.wordpress.com/, which provides substantial evidence of the fact that science does, in fact, have police. Indeed, one of the biggest conversations in science right now is whether or not the drag-ass peer-review process is going to get trumped by the peer-review armies out there in the blogosphere, ready to shred overstated or misinterpreted results at an embargo's notice.

    You namecheck the bad guys of autism research and leave out the extensive research that has been done on early intervention, etc., demonstrating considerably efficacy of early intervention in ameliorating the negative manifestations of autism. It doesn't "cure" autism, and I understand the stance of autistic people who don't want a cure.

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  5. The people I mentioned were thought of as brilliant in their fields, and for better or worse held the discourse of autism for years, until a father came along, not admitting his personal tie in,his son, and wrote the book,"Infantile Autism"...Bernie Rimland. He ended up being looked upon as a charlatan, too, in his old age, but he tried. And he listened.
    Even though he ended the rein of Bettleheim's terror, he is given little regard. What makes you think the current scientists have any better handle?

    I'm not going to mention any present day scientists. The fact that Pub med has gone from 6000 studies going back forty years for the most part, and has filled in an additional 11000 studies in the last 10, and yet still NO ONE can even identify what autism IS, let alone help to end the suffering or cure it...makes me wonder who the true opportunists are.

    You mention early intervention. Most early intervention today is based on animal bevavior experiments, and Lovaas. It has infiltrated the schools, much like "time-out rooms" (closets) that are being built in new public schools right under your nose while you decide who makes sense to your logical mind. Early intervention is worthless unless the teacher has a heart for children. Teachers who help the childrewn to believe in themselves, who do the hard work to teach profoundly afflicted kids to read, and then, to speak.Teachers made the difference in Temple Grandin's life, not scientists doing studies on mice with "cold parenting skills" or fruit flies that are solitary...Crickey, wish I could get a wack at that stuff!!

    What proof of advantage has early intervention given to any child? Autism has always been a part of mankind's neurological makeup. For centuries, austists have survived, some of whom thrived, without early intervention or drugs. Are autists lives any better today than they were in the past? Offer me proof.

    Science is a religion. It's proponents must believe without question. Most of us don't live in a world of science, but of love. Tough, that, eh?

    The Geiers, Wakefield...science can point to the sliver in their eye. But they can't see the log in their own. Geirs and Wakefield...scientists...who went outside the safety net and screwed up. How many more are there like them, that we don't know about? How much of science has come from experimentation, trial and error? All of it, isn't it? Oh, please God, just give us a serendipitous error like penicillin...things are moving kinda slow.

    Psychology would back up if it could, before it began labelling millions of children as mentally ill. The new thing is Bi-polar. Autism is already on the way out. Not scary enough.

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  6. Genome-wide associations studies are, as we speak, telling us more about autism (and other things) than anything else, and we haven't had the capacity for that previously because this kind of technology wasn't available. Autism is complex, and the very findings from these studies indicate as much.

    As for "Science is a religion," it's interesting that you bring that up, as I was just reading a bit of a rebuttal to that here: http://scienceblogs.com/insolence/2009/08/in_which_orac_defends_chris_mooney_and_s.php

    I'm sorry that science is too slow for your taste. See, we only have people to blame for that.

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  7. I know this is sketchy scary stuff, but: There is a hormone connection that we must research. I do think the Geiers have best intentions at heart, and endeavored to help children, in the midst of a paucity of research. Estrogen excess is a known trigger for seizures; see Age of Autism post by Teresa Conrick, 5/4/11. Meanwhile I have a client w autism and medication resistant seizure disorder. His neuro MD has stopped medicating these - a grand mal, tonic clonic seizure weekly in which this young man often vomits. His suffering has been passed off as "normal for autism" by his providers. This is horrifying. Estradiol is a metabolite of testosterone; excess testosterone may be one of the triggers for so much suffering here. If Lupron could help this long suffering young man, I don't doubt his parents would like to know. Stripping Dr Geier of his license is just more witch hunt.

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  8. I took ONE shot of Lupron for fibroids and it utterly destroyed my health and life. Anyone who gives Lupron to a child should be jailed. The drug has a terrible reputation and is notoriously dangerous even when given to adults. The FDA has issued many warnings. Please Google "Lupron victims" and get the facts. The Geiers probably got kickbacks from the drugmaker. Abbott Labs is frequently.cited in the Wall Street Journal for compensating doctors illegally for prescribing drugs or medical devices like stents. Hopefully Lupron will be taken off the market in 2014 when the patents expire, and lawsuits increase. Lupron is not a cure for any condition.

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  9. See, we only have people to blame for that.

    My point, exactly.

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  10. And mine, as well. There is no science without people. Science is not a monolith, and it's not a religion. Scientists are not gods, and they cannot make time or technology move faster.

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  11. Funny you should lead to Orac. Why not Skeptico? Vaccine parents MADE them.

    In nomine Orec et Skeptico, et BSB sancte...A-men. (Sorry, Kev...making a point...)

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