Another sad and despicable autism tale

[skepticscott]

Desperate to help their autistic children, hundreds of parents nationwide are turning to an unproven and potentially damaging treatment: multiple high doses of a drug sometimes used to chemically castrate sex offenders.

The therapy is based on a theory, unsupported by mainstream medicine, that autism is caused by a harmful link between mercury and testosterone. Children with autism have too much of the hormone, according to the theory, and a drug called Lupron can fix that.

"Lupron is the miracle drug," Dr. Mark Geier of Maryland said after meeting with an autistic patient in suburban Chicago.

Geier and his son developed the "Lupron protocol" for autism and are marketing it across the country, opening clinics in states from Washington to New Jersey. In the Chicago area, the treatment is available through Dr. Mayer Eisenstein, a family practitioner in Rolling Meadows.

But experts say the idea that Lupron can work miracles for children with autism is not grounded in scientific evidence.

Four of the world's top pediatric endocrinologists told the Tribune that the Lupron protocol is baseless, supported only by junk science. More than two dozen prominent endocrinologists dismissed the treatment earlier this year in a paper published online by the journal Pediatrics.

If the medical profession were what it should be, both of these guys would be in prison.


http://www.chicagotribune.com/health/chi-autism-lupron-may21,0,242705.story

[charlie]

1. Wow

Hormone disruptions at the worst possible time, those kids are going to be fucked up. They'll hate their parents when they're autistic adults with serious health issues.

Here's the nub of the matter. Big money:

To treat an autistic child, the Geiers order $12,000 in lab tests, more than 50 in all. Some measure hormone levels. If at least one testosterone-related level falls outside the lab's reference range, the Geiers consider beginning injections of Lupron. The daily dose is 10 times the amount American doctors use to treat precocious puberty.

By lowering testosterone, the Geiers said, the drug eliminates unwanted testosterone-related behaviors, such as aggression and masturbation. They recommend starting kids on Lupron as young as possible and say some may need the drug through the age of puberty and into adulthood.

The cost of the Lupron therapy is $5,000 to $6,000 a month, which health plans cover, Mark Geier said. However, two families told the Tribune that they had trouble getting insurance to pay for the treatment.

The older Geier comes off as a brusque asshole with low regard for the kids he's treating. I don't know how any parent, even an alt-medicine woo, could trust him.

[progressoid]

4. They say they won't give it to teenagers

But only because insurance won't pay for it.

Still, Eisenstein said he would not treat teenagers with Lupron, citing insurance difficulties. "It is easy to explain a 4- to 5-year-old with high testosterone . It falls under precocious puberty," he said. "But with an 11-, 12-year-old, it becomes a big fight."

Monsters.

[skepticscott]

7. He's brusque towards people who dare to criticize him

but I suspect that Geier is very good at playing off the fears and distress of the parents of autistic children, and very sympathetic when interacting directly with them. He offers them hope, knowing that they will grab at any straw, and he also probably does a very good job of at least pretending to be empathetic with their frustrations regarding the mainstream medical community.

[Odin2005]

13. The Geiers are manipulative monsters that belong in prison.

[Orrex]

2. The testosterone/autism thing was discussed in GD (I believe) a few weeks back

The researcher whose work was misrepresented in order to yield that conclusion was disgusted by it, fearing the impact of the misrepresentation.

Judging by the link you cited, I'd say that his fears were well justified.

[progressoid]

3. I don't get it.

They scream and holler about vaccines but are willing to subject their children to an unproven drug.

Wait, maybe I do get it. Both actions don't require any rational thought.

[varkam]

5. Not to mention that the younger Geier is the head of a Biotech firm that **DEVELOPED** Lupron...

How's that conflict of interest workin' for ya?

[trotsky]

9. Silly varkam.

TRUTHERS never have conflicts of interest OR want to make money. They're only trying to HELP PEOPLE fight the big evul pharmaceuticals who push treatments that they make money from! Uhh, yeah!

[cosmik debris]

10. Aren't they the same ones who pushed chelation a while back?

Is this the same song with a different verse?

[LeftishBrit]

11. Yep.

Apparently testosterone binds irreversibly to mercury.

[mr blur]

6. "Lupron is the miracle drug," -

but I see that they aren't actually giving this "miracle" away for free. They should be locked up.

[LeftishBrit]

8. I posted this on a GD thread about it.

I suspect that this is based on a distortion of some genuine research findings.

It was found by Baron-Cohen and his group that prenatal testosterone levels are somewhat predictive of later language skills in the preschool years. Most of this is just because boys have more prenatal testosterone and are also slower to talk than boys; but there is a slight predictive role even between genders. Some people in the media suggested that this would enable us to 'predict autism' in the womb.

But this is rubbish. None of the sample were autistic. Autism is not just a severe form of being slow to talk (there is actually a separate and much commoner disorder, Specific Language Impairment, which comes closer to that description). Moreover, even if it were found that prenatal testosterone predicts autism - which it doesn't - that does not mean it *causes* it; and certainly chemical castration is not a cure!

It reminds me of the awful physical abuse of people with mental illnesses in the past, aimed at 'driving out demons', etc.

ETA: Apparently this preceded the 'prenatal testosterone' theory, though that is probably giving it greater respectablity. According to a Wikipedia entry on Lupron:

'A 2005 paper suggested it as a treatment for autism,<4> the hypothetical method of action being the now defunct theory that autism is caused by mercury, with the additional assumption that mercury binds irreversibly to testosterone and therefore leuprolide can help cure autism by lowering the testosterone level and thereby the mercury level.'

The paper was by the Geiers, needless to say. I realize that Wikipedia is not fully reliable on such things - though they do say 'now defunct theory', but I don't really feel like reading the original paper right at the moment!

'Mercury binds irreversibly to testosterone'? - wow.

[Odin2005]

14. I used to be a fan of Baron-Cohen's research, but I've been losing respect recently.

I think his research, and a lot of Autism research more generally, is based on flawed notions about supposed "empathy deficits" and "lack of theory of mind" in people on the Autism spectrum. I find the supposed Systematizing vs. Empathizing dichotomy that gets thrown around to be flawed as well. Because according to those notions I should not exist. I am an Aspie who does, in fact, empathize, indeed, relating to others is an important aspect of my personality.

IMO the supposed "empathy deficit" is actually just another autistic sensory issue, not getting the little signals in body language and voice tone that give info on other people's mental states, when I get that information of other people's mental states via other means I can empathize just fine. I think people, even these "experts", mistakenly conflate "Empathy", which is an emotional response to knowledge about other people's mental states, to the instinctive ability for non-autistics to understand the little things that betray those mental states. I have ran into articles criticizing the "Theory of Mind" thing, it's been a while since I've read the articles but the gist of them is that the experimental data that those notions are based on (a test involving asking a little kid if a person puts a doll in a spot and someone moves the doll where does the first person think the doll is) don't given enough information of the mental states of autistics to warents such conclusions. The claim is that since the autistic kids usually mistakenly thought the first person thought that the doll is in the new spot that they must not be able to see things from the other person's point of view. The articles gave several alternative reasons for the mistaken answers (one I remember being that the autistic kids may have overlooked implied "common sense" assumptions about the scenario).

[Odin2005]

16. Here is one of the articles I was talking about:

http://www.aspiesforfreedom.com/showthread.php?tid=15890

[LeftishBrit]

17. Interesting points...

certainly there is a lot of research evidence that failure on theory of mind tasks does *not* indicate lack of emotional empathy and vice versa. E.g. James Blair of University College London carried out a study where people were shown pictures of people or animals suffering some or distress. Most people, including those with autism, showed some physiological stress reactions to such pictures, while people diagnosed as psychopaths did not. On the other hand, psychopaths had no problem with theory of mind tasks, which most autistic people failed. So, whatever explanations one has for autistic people's failure on these tasks, it does not mean lack of empathy at the emotional level.

I like Baron-Cohen's work in many ways; but I think he's a little too much of a headline-grabber and sometimes a bit inclined to promote somewhat simplistic theories, e.g. about gender differences in cognition, and autism being an 'extreme form of the male brain'.

[Odin2005]

12. This shit REALLY pisses me off.

Can we call these creeps Eugenicists yet?

[semillama]

15. The thing is, I don't think eugenics has anything to do with the Geiers

As far as I can tell, it's pure greed, with no thought given to the patients after their wallets have been emptied.

A poster on Orac's blog entry on this topic noted that "Geier" is German for "Vulture" but of course, implying these bastards are like vultures is a disservice to vultures, who are actually useful and play an important roll in nature. These guys are more like ticks in my book.