Why not just castrate them? (Part 5) The Geiers' "Lupron protocol" metastasizes

Good god. This is....I don't have words. Has no-one explained to this woman what they are actually doing to their son, along with the risks of heart disease, wildly premature osteoporosis, stroke risk, etc.?? Isn't that medical malpractice? How can this NOT be medical malpractice?!

So they aren't even bothering to pretend that Lupron is the precursor to their 'chelation protocol', they are just going ahead and chemically castrating this poor boy and leaving it at that. This is really sick and abuse of special needs children. How can this not be medical malfeasance?

I do not doubt the Badillo family's earnest desparation. Which makes the fraud perpetrated by the Geiers all the more revolting.

It has started to cease to amaze me on the apparent thinking of some of these people.

"oh noes, he is non-verbal and is aggressive as a kid" Well yeah, I'd be aggressive too if I couldn't get my frustrations, wants and needs across, and if the people supposedly trying to help didn't actually help.

"He's aggressive and touches himself and he's a child!! **wail**"
um, no. He's 18, which, depending where you are, is old enough to vote and drink alcohol. He's now a teen and a young adult, and one that needs to be taught not to do certain things in public, sure, but still not a child.

I guess that's part of what brings these people to the Geiers': they can't understand that autism is a developmental disorder, meaning that while yes, our development may be delayed, we are not static. And that includes our bodies. We don't stay children forever.

Sheesh.

What's funny is that the Geiers' have been trying to friend me on facebook. I keep the friend request around so that I can giggle at it.

I am rarely at a loss for words but all I can say is that I had tears in my eyes over this one. This is nothing short of heartbreaking.

Here's an idea for the Badillos: try teaching your son how to appropriately engage in activities or express his frustrations. Give him safe places to do it. Teach him to masturbate in the bathroom, instead of in public. Teach him safe ways to act out his aggression. Get in touch with an Applied Behavior Analyst who can help teach you how to teach him.

Oh, and various state authorities, get off your asses and shut these quacks down before more children are tortured!

Here's thought. Have you considered writing something modelled on Jonathan Swift's "A Modest Proposal"? Namely, that since strong evidence points to a genetic component to autism, then chemical castration would prevent genes responsible for autism from being propagated. The silence of government agencies that are responsible for regulating medical procedures could be presented as tacitly supporting the eugenics protocols.

Given the widespread lack of critical thinking today, it probably should be published under a pseudonym. Or may be the satire could be modelled on the protocols of the elders of zion: not so much world-domination but eugenics.

Then of course, there's always the Steisand effect.

"The kids don't understand. They have impulses. It's what happens when you have high testosterone," Badillo said.

No, that's the sort of thing that can happen when a boy has stone cold normal testosterone levels but no impulse control.

This is exactly what I was thinking. Has she ever been around a teenage boy?

She said she knows the drug has risks but believes Lupron critics do not fully grasp the hard realities of life with an autistic child.

I have to admit, I do worry about what will happen when Gabriel starts puberty. He is only six now, but is already almost strong enough to hurt me when I need to restrain him (mostly to stop him from "loving his sisters too hard").

I don't know what I am going to do when he is much stronger than me, and more aggressive than he is now (not to mention sexually curious). Gabriel going through puberty is a very scary thought that is always in the back of my mind. I sure as hell don't think the "Lupron Protocol" will be on my short list of possible treatments. I don't have the right to damage his body. We will have to figure out a way handle the difficulties that are inherent in male sexual maturation, just like the parents of every other teen (albeit, it will be more difficult with Gabe).

But they are not even doing this solely for aggression and sexual impropriety, they think this can cure autism. Mercury/testosterone sheets? Honestly, this has to be the most ridiculous autism treatment I have heard of to date. I just don't think it would grok with me even if I were inclined to woo.

I wonder what diagnosis the doctor in this case gives to justify the Lupron. "Precocious puberty" seems like a non-starter in an 18-year-old.

I find this as appalling as you do, and am glad you are drawing attention to the inappropriateness of this. At the same time, I think your readers expressing their outrage and judgement at the parents don't seem to know what they are talking about either.

Don't get me wrong - there's no legitimate defense for those who should know better and offer up these strategies as therapy. But the "they should just teach their kids better behavior" crap in your comments box is pretty damned stupid too. Do you really think that anyone does the kind of crazy shit those parents are doing without trying their damnedest to teach their kid not to touch themselves in public, or without finding other ways to try and deal with a full sized, adult male kid who is beating on his mother in a tantrum because he can't express himself? Do you not think that the crazy "search for solutions" comes after people have tried every fucking thing that's out there?

That doesn't justify the failure to think critically. It doesn't justify health risks to their kid. But if you have no idea what it is like to love someone and not be able to help them, be grateful, and turn your ire appropriately to the scum who don't present the risks and lie about the benefits, not the parents who do stupid things because they are desperate.

I have an autistic child, and while I confine myself to treatments that work, and that have actual evidence in their favor, I also know that my future and the Badillo's probably look a lot alike. My 10 year old is 5'1 and weighs 80lbs. We work with him constantly and he gets 40 hours per week of the best interventions on the planet - and he still gets frustrated and angry and has tantrums. I can control him still physically when he can't control himself - but what happens when he's a 6'4 (likely) 200lb adult, totally out of control, in a society that offers very minimal supports for disabled adults and their families?

I'm lucky - I'm 6' tall and strong for a woman. My husband is also tall and strong. Our kid is on the mellower side of kids with autism. So we'll probably be able to handle him through the most aggressive and difficult years of his adulthood - by the time I'm we're getting too physically frail to wrestle our kid to the ground when he's having a tantrum and a danger to other people, he'll be past 40, and with luck, starting to settle down. At least I hope so.

As for the touching themselves - do you folks know how society responds to adult males who are seen masturbating publically? My kid doesn't look like he has a disability - he looks like everyone else. I'm lucky again - I'm middle class, educated and fully aware of my rights - I know I can get my kid pulled out of jail if he's found playing with himself near a school yard - which happened to someone I know. But for a kid who can't understand the world, even being pulled in and treated like a criminal is a trauma - a huge one.

My husband and I realized that when we went away this year for one overnight, it was probably the last time we will ever be able to do that. Both my son's grandmothers totally adore my son - and working together, they were able to handle him. But they are both getting older, and my son in a tantrum frightens both of them. We know this, even though they try not to say so, and are ashamed that they would be afraid of their grandson. So we know that the days of us going away together alone once, say, every other year, are now over, until maybe, maybe his brothers are grown and old enough to take him - in ten years. And again, that's ok - that's pretty minor. But I know parents who can't go to the grocery store, for fear of a tantrum turning violent, who can't leave their homes. And yes, they've tried to modify behavior in every conceivable way.

I know these things are in my future because I watch them being the present for the parents of adults with severe autism. I'm comfortable with my future - my kid is a wonderful, sweet, funny, loving kid. I'm lucky to have him, and I love my life with him - my husband and I are glad he's in our lives. But that's not the same as suggesting that I have a lot of other choices, other than to make the best of it.

I also understand the level of desperation people get to. The tiny amounts of money and help you can get out there are pathetic. And the other alternatives are group homes and other entities, many of which aren't well set up to handle autism, and often, where there are other risks - a friend of mine with a wonderful 27 year old, hard to control autistic daughter just had to have her treated for venereal disease - contracted from one of her supervising employees who raped her. For those without money, those are the kinds of trade-offs available.

Look, there's no part of this in which I defend the choice of those parents. But in the absence of some real sense of what life is like with a child with autism, I think your readers might try for a little compassion. I have no sympathy for the purveyors of this crap. I have a great deal of sympathy for parents in a society that treats the disabled badly and supports families minimally. Yes, what they are doing is stupid and indefensible. So I hope that all of you are busting your behinds to give parents what they actually need - not chemical castration, but the kinds of supportive social resources and programs that would make it possible for parents of a deeply loved autistic child who is violent and sexually explicit in public to have a semi-normal and functiona life - to provide the economic support, the human assistance and the attitude readjustment necessary so that they have better choices than the stupid ones.

Sharon

Scott, Lupron for the adult has never been an issue, there are plenty of diagnosis available to justify it. It was the use in pre-teen children that needed the "precocious puberty" diagnosis to be covered by insurance etc.
And while there is still a woo component to this Lupron use, the woman comes pretty close to admitting it's a handling aid, not a "cure". What opens a totally new can of worms, how far can we go to zombify mentally incompetents for ease of storage?

@Kristen
In all honesty, if you are scared for your safety or your daughters, now would be the time to learn a personal defense/martial art that focuses in on joint locks and submission. Not to hurt your son, but to learn restraint techniques he can't force his way out of. It may be a smart idea to get your daughters involved to, so they can fend for themselves if he gets out of control. Not bad for learning to deal with high school boys as well. The nice thing is that many of these holds don't hurt, but are nearly impossible to fight once you are in it. I would imagine there are classes for medical personnel who deal with out of control or violent patients as well. I practice pekiti tirtia, kali and muay thai. I wouldn't use any of them for restraining a child or teenager. It is amazing how you can restrain a person and not hurt them or allow yourself to be hurt as well.

Sharon @ 10:

1) Yes, society definitely needs to do a better job of providing affordable and legitimate treatments for people on the autism spectrum, as well as for many other conditions. I have been guilty of boring people to death in these comments sections by continually pointing out the correlation between the rise of (relatively cheap-seeming) woo and the rise in costs of science-based medicine (and the corresponding lack of coverage for such even as most Americans' real wages have remained stagnant or dropped as the very rich have got richer). Look, for instance, at the costs of glucosamine versus a knee transplant: While the costs of glucosamine over forty years at $60 a month might eventually exceed that of a knee transplant, an eighty-year-old or even a sixty-year-old person might decide to skip the painful surgery with the arduous recovery time in favor of simply popping a pill or two a day.

2) There is hope for your son, and there are a lot of autistic readers of this site, productive members of society, who are living proof of this and will tell you so. Look at the case of Temple Grandin: She spent her childhood literally flinging her own feces at people, and she grew up to be a pioneering scientist in the field of humane treatment of livestock and other animals. She wasn't chelated or Luproned, either.

Todd W. asks a very important question...where are the state authorities? There is no question that this is a Josef Mengele redux. Print out Orac's and the newspaper articles and mail them to the state licensing boards.

@Sharon

I know that dealing with an autistic child can be hard. I know that it is difficult to teach appropriate behaviors. I also know that it can be done. Perhaps I might have been a bit premature in my anger toward the Badillos, since I don't know all the details of their situation. But I think it is a valid question to ask: what have you done thus far? How long have you tried it?

But even if they have given it their all, they have a responsibility to inform themselves. They should know better than to subject their child to a fringe treatment that has no scientific support.

The greater portion of the outrage certainly belongs with the Geiers, but the parents are not completely off the hook, either, especially where they are taking responsibility for the treatment of their child. If they were making the decision for themselves and it only affected themselves, I'd think they were not too bright, but I would not condemn them for it. The problem is, they're making this decision for someone else. They are affecting someone else. Their decision is for their benefit and peace of mind, not for their son.

I understand a bit about what Sharon Astyk is trying to say, but there's one thing I would like to say: how do you know that some of us aren't parents with autistic children? Or even autistic themselves?

I always find the "you don't know what it's like" angle to be rather weak, as it always based on the assumption that people would have more compassion or be more understanding if they were in the same position. Why yes, I understand it can be damn tough to raise a child, and heavens knows special needs can make things more complicated.

But at the same time, no. Don't assume some of us haven't had the same experiences and don't know what we're talking about. Because I assure you, we have and we do. Heck, some of us have experienced these things from the other side, and it's just as tough being the child as it is being the parent.

~Corina
autistic adult

Do you really think that anyone does the kind of crazy shit those parents are doing without trying their damnedest to teach their kid not to touch themselves in public, or without finding other ways to try and deal with a full sized, adult male kid who is beating on his mother in a tantrum because he can't express himself?

I know these parents are not just doing this because. They are desperate, like so many of us are at times. If one doesn't have an autistic child they cannot know the frustration of "what do we do now?" when you feel you have tried everything.

This is a very serious problem that parents of male autistic children have to face. I, like you, don't think castration is a reasonable solution; but I can understand the reasons parents would feel like it is their best option. I don't agree with them, but I can empathize. I can still think they are being stupid and hurting their sons.

In all honesty, if you are scared for your safety or your daughters, now would be the time to learn a personal defense/martial art that focuses in on joint locks and submission. Not to hurt your son, but to learn restraint techniques he can't force his way out of.

Thank you for your concern:

He doesn't try to hurt his sisters, he is normally very gentle with them. It is when he feels he needs something to squeeze, he hugs them too hard. When he lashes out in a tantrum, he is almost always focused on me when he is home (teacher and aids at school). I never leave him alone with his younger sisters, even for a minute (older sister is 13).

I would imagine there are classes for medical personnel who deal with out of control or violent patients as well.

There are classes for parents in our area (not martial arts but restraint and calming methods) and we have taken these.

I don't have trouble holding him, I have learned how to immobilize him. He can and has hurt me in the process (at this point I only weigh 45 lbs more than him) and this is what I worry about.

When my daughters are old enough they will learn self-defense, but not because of their brother. To be sure, if I feared for their safety, I would take stronger action.

It is possible they may not be able to help this child. But what the Geiers are doing *is* castration; clearly they have lied to these parents. Whether this is effective or not, they have been definitely misled as to what the therapy is doing (and likely also misled as to the necessary dose).

I have to wonder, once again, why the manufacturer isn't appalled. Pharmaceutical companies are certainly not immune to avarice; this is a case in point, where they don't really care so much how the drug is used as long as it's not their fault if it's used inappropriately.

Scott@9
It's not just the fact that he's 18. By definition precocious puberty occurs when the signs of puberty occur in boys younger than 9 or girls younger than 8. So for a boy 9 or older it would not be a valid diagnosis. I wonder what diagnoses they are using.

Mark Geier has an MD, IIRC. Can someone report him to his state medical board?

I know they set up their own IRB to rubber stamp anything they do, but there has to be some oversight for this sort of thing, right?

This is just a naive guess, but it seems to me that if there is a legit problem with aggression in autistic teenage boys, maybe something like an anti depressant would work? It seems like that would be safer and more directly address than issue than Lupron at least.

It's worth remembering that these are the same Greiers that were the authors of two papers in the autism-special issue of Acta Neurobiologiae Experimentalis that included the latest version of the atrocious Hewitson/Wakefield monkey study.

http://scienceblogs.com/insolence/2010/07/too_much_vaccineautism_monkey…

That's the level to which that particular journal has sunk, for anyone who has any doubts about this, I'd recommend a read through this Editorial comment http://www.ane.pl/pdf/7016.pdf

Unfortunately, unless a parent of one of the autistic kids who is being catrated changes their mind and takes the doctor who prescribes lupron to court I doubt that the state authorities will be in any rush to do anything about this.

One thing that is not clear to me, and I have to say, if I DID have an autistic child, would have to be very well established before I could consider anything like this: is there ANY indication that the testosterone levels are abnormal? I mean, aside from "touching oneself in public," which, as Orac notes, has multiple explanations, the most important being lack of impulse control. That behavior is most certainly not uncommon for young boys - my sister-in-law's son had a huge problem with it. But he was 2 - 3 at the time, and so the fact that he always had his hand down his pants had nothing to do with testosterone levels.

There are blood tests that can give you testosterone levels. If some doctor is going to tell me that they are going to treat my child for too much testosterone, they better damn well be showing me that it is abnormal (even in precocious puberty, I want to see a confirmation that testosterone levels are at puberty levels in my significantly (more than 2 - 3 standard deviations from the mean) pre-pubescent child)). And it better be a calibrated, standardized blood test - no drawing blood while they are masturbating with porn and comparing that to normal activity.

And where are the alt-meddie "big pharma doesn't want to treat they just want to shove a pill down your throat" loons on this? They seem awfully silent, despite the fact that the Geiers are textbook cases of people who want to take a complicated issue and cure it with a magic pill. In a horrifyingly abusive way at that.

Jesus, oncologists get crap because they using nasty chemo reagents to try to destroy cancer, and people unfortunately have other effects as a result. But the Geiers take a cancer treatment and apply it where it doesn't belong, and they are left untouched? The dissonance is mind-boggling (and this is of course just another example of it)

I do wonder if these parents are aware of "exactly" what they are doing to their children. Perhaps they've been so sold on the idea that their child can never be "normal" that they don't care about the negative side-effects.

This is just a naive guess, but it seems to me that if there is a legit problem with aggression in autistic teenage boys, maybe something like an anti depressant would work? It seems like that would be safer and more directly address than issue than Lupron at least.

Oh absolutely. I don't presume to know the correct answer, but modern psychiatry has means for treating aggression, and while some approaches might not work as well with autistic cases, they have other options to try. None will involve chemical castration.

Of course, the problem with this is that, once again, unlike the quacks, those doctors will not lie to the parents with a guarantee and promise of a cure (see Suzanne Sommers). So they would prefer to hear lies that promise them miracles instead of the honest truth of, we'll do our best.

Oh absolutely. I don't presume to know the correct answer, but modern psychiatry has means for treating aggression, and while some approaches might not work as well with autistic cases, they have other options to try. None will involve chemical castration.

None of the options for dealing with an adult or near-adult autistic male with problems with aggression or inappropriate sexual behavior in public, and who has not responded to behavioral therapy, are particularly appealing. The medications most commonly used for controlling aggression in people with autism are fairly powerful and have some side-effects that raise serious concerns, particularly with extended use. I'm not defending quacks like the Geiers, or the use of Lupron in children, but it may well be that reducing testosterone levels could be the best option in some cases.

The medications most commonly used for controlling aggression in people with autism are fairly powerful and have some side-effects that raise serious concerns, particularly with extended use.

As opposed to Lupron????????

The more common drugs used to control behavior in autistics tend to be anti-psychotics like risperdal, haldol, etc. Good programs try to minimize or eliminate use of drugs as much as possible.

Well. If they're going to go down that road, why not go whole hog? I understand there are other treatments that I daresay would be even more effective at reducing aggression...

Yes, as opposed to Lupron. One can live a relatively normal life on Lupron. It may be difficult or even impossible to have children of your own, but other than that, one may live a basically normal life. That's not true of drugs which essentially put the person into a stupor. There *are* cases (thankfully, very rare ones) where there really isn't much alternative. (I am not aware of antidepressants being much use in treating cases as severe as the one described in the OP. They do work, but some of these cases are *really* bad. Remember, we're not just talking about smearing feces on the wall or punching a sibling. There are, rarely, worse cases, even after extensive behavioral therapy.)

It presents a huge and very difficult ethical problem. On the one hand, this is a huge thing to do to someone without their consent. On the other hand, it could be a better thing than homelessness and/or incarceration, which could be his eventual fate otherwise. But here's the really nasty part -- what if it doesn't even really help with that?

Not too long ago, people that violent were treated surgically. They were not typically castrated; they were lobotomized. Was that better or worse? I'm not suggesting an answer. I'm not sure there is a simple one.

@Sharon Astyk: Kindly don't tell me I don't know what it's like to deal with a sexually-maturing, aggressive-with-no-impluse-control, profoundly autistic boy. Ours is now 19. We have a reasonably large extended family, and he has several carers, and I have absolutely no doubt that this has helped immensely in removing some of the burden from each individual. Nevertheless, I can assure you that we all got to deal with it, in all its glory.

When I am outraged and appalled at using something like Lupron to control this behaviour, I speak from knowledge of the behaviour. I also speak from knowledge of the permanent damage which it is likely they are inflicting on their own child, one who already has quite a lot of problems to deal with. Osteoporosis is only one possible "side effect" of aggressive Lupron treatment. Do you have ANY idea how much osteoporosis *hurts*? And what that could do to someone who has to start dealing with it in their 20s or 30s?

Remember, the Geiers based their "testosterone sheet" delusion on an old paper in which testosterone could bind mercury when precipitated out of a high temperature benzene solvent.

Hey, the human brain is exactly like hot benzene, it makes perfect sense!

But kidding aside, if mercury were bound with testosterone in sheets, wouldn't that bound-up mercury be unable to chemically interact with the usual metabolic pathways it disrupts, rendering it harmless?

I wonder whether one of the things going on here is that we hear constantly about "autistic children," often to the exclusion of recognizing that some of them grow up to be autistic adults. Someone who thinks primarily of children might be more likely to think that sexuality/sexual behavior is inherently a problem to be treated.

Or they may think that their sons are never going to be sufficiently mature to marry and have children (this is probably true in some cases, but not all), and go from their to treating more or less normal adolescent sexuality as the problem. (The problems, as far as I can tell from here, are aggression and not knowing when/how it's appropriate to express their sexuality, not that their sons are male human beings, who, like most adolescent and adult males, have sexual impulses.)

@Luna_the_cat

Osteoporosis is only one possible "side effect" of aggressive Lupron treatment. Do you have ANY idea how much osteoporosis *hurts*? And what that could do to someone who has to start dealing with it in their 20s or 30s?

Not to mention when you might have limitations in or even no communication skills. You can't make your pain known in a manner which others can understand. They can't help you the way you need. How frustrating must that be?

It presents a huge and very difficult ethical problem. On the one hand, this is a huge thing to do to someone without their consent. On the other hand, it could be a better thing than homelessness and/or incarceration, which could be his eventual fate otherwise. But here's the really nasty part -- what if it doesn't even really help with that?

I simply am appalled that the Geiers would promote this 'treatment' in all of its incarnations to parents of autistic children. And the parents that would consent to this treatment, while desperate, have been persuaded to remove autism or behaviours at any cost by various organisations.

This treatment hasn't even been adequately tested as any use the Geiers are promoting. No animal safety and efficacy, no dose response, no clinical trials, nothing. They are just injecting up children with larger-than-adult-therapeutic doses. There is no excuse or explanation for this that doesn't involve medical malpractice. I am simply gobsmacked that this is being done so openly and with no question by any regulatory agencies.

Lobotomies were nothing more than human testing on vulnerable subjects as well and its existence is a shameful mark on medical history. Lessons should be learned from this, not used as a metric for what subsequently may be better or worse.

Geier has been reported to the Maryland state medical board in the past. They investigated but didn't take disciplinary action. At that time, though, I don't think he was into Lupron yet, just chelation. Maybe they'd be more inclined to act now.

In case anybody's motivated: http://www.mbp.state.md.us/pages/whatis.html

@Sharon Astyk: Kindly don't tell me I don't know what it's like to deal with a sexually-maturing, aggressive-with-no-impluse-control, profoundly autistic boy. Ours is now 19. We have a reasonably large extended family, and he has several carers, and I have absolutely no doubt that this has helped immensely in removing some of the burden from each individual. Nevertheless, I can assure you that we all got to deal with it, in all its glory.

Did you even READ Sharon's complete post?

Re: Testosterone levels in autistics

So, out of curiosity, I went to PubMed and searched for "autism testosterone" (sans quotes) to see what published research there may be about testosterone levels in autistics vs. neurotypical controls. Most of the results dealt with testosterone exposure in utero. Of the few that actually looked at plasma testosterone levels, most were by the Geiers and, surprise, surprise, found higher concentrations.

I did, however, come across one that looked at plasma levels in pre- and post-pubertal autistics, individuals with mental retardation/cognitive impairment and normal controls. They found that:

Data indicate that altered secretion of the androgens is not a common feature of autism. However, abnormalities of adrenal androgen secretion may be present in individuals with cerebral palsy.

That was the only one, other than studies by the Geiers, that looked at testosterone levels between those with autism and those without. Considering the Geiers' financial interests, this study casts some doubt on their claims. It would be nice, however, to have a larger study performed to answer the question, conducted by someone unrelated in any way to the Geiers and who do not have real or apparent pharma-related COIs as added ammo against this barbaric treatment.

This is just a naive guess, but it seems to me that if there is a legit problem with aggression in autistic teenage boys, maybe something like an anti depressant would work? It seems like that would be safer and more directly address than issue than Lupron at least.

Psychiatric medications are unpredictable in autistic children (we learned this the hard way!). There is a good reference here concerning this. It is about three quarters of the way down the page.

I don't like to use medication on Gabriel (he takes a low-dose stimulant only on days he goes to school). But there are pharmaceutical options, (however unpleasant that may seem) far, far preferable to chemical castration.

#16 Calli: "If one doesn't have an autistic child they cannot know the frustration of "what do we do now?" when you feel you have tried everything."

One does not need an autistic child to feel this way. With any special needs child, it is quite possible to reach this point. We did with our son with CP. He saw the best pediatric neuro- and orthopedic surgeons and reached a plateau. Nothing was going to give him more physical functioning.

Our answer was to find things for him that he can do with what he has and love him more. We maximized his strengths.

And, that is all you can do. Reaching for the can of Lupron is never the answer.

As for Sharon @ #10...I had hosted a support group for parents of AD/HD kids for several years. One thing I learned is to never assume that the parents have done it all, or not done anything. I saw both ends of the spectrum. As for the issue of the lack of services (my main issue), it is something that affects all families with special kids. We looked for respite care where I live, and found NOTHING that could address the needs of my son. Zero. Fortunately, we have a camp which is good for one week a year. They take all disabilities.

Note that every time I read about a parent hurting their special kid, I wonder if that would have happened if there had been better services available to them.

jay.sweet at #27 apparently had the same awful idea I had: what if they come up with some way to connect "mercury poison from vaccines" with a need for a lobotomy?

"The mercury caused excessive growth of negative tissues in the brain, and they're restraining proper growth." Doesn't have to meet scientific criteria, just be an explanation which can be imagined by someone with no biological or medical background. If they can re-frame doing a lobotomy as a Brave Maverick rebellion from the Establishment (maybe by using acupuncture needles), the Geiers or those like them could show off plenty of anecdotal "success" stories.

Scary.

Science Mom:

Lobotomies were nothing more than human testing on vulnerable subjects as well and its existence is a shameful mark on medical history.

I think you are too kind. The Geiers are not experimenting with Lupron; they're simply using it as a vehicle for making money. This claims are internally contradictory; they have to know, on some level, that this doesn't make sense as a treatment for autism, and that the only smidgeon of plausibility comes from the practice of castration of male domestic animals to reduce their aggression. They're either insane or they are a bit like the infamous John Brinkley, who used to implant goat testicles into people as some sort of treatment. He always appeared to believe in his treatment, but his business practices strongly suggest to me that he wasn't all that concerned with whether or not it actually worked; just in making money and stroking his own ego.

Lobotomies have an interesting history. They started out as essentially experimenting on the legally incompetent (that is, those who were not legally able to give or withhold consent). When it reached its peak, however, it was definitely not experimentation anymore. The practitioners were convinced they knew what they were doing, despite copious evidence to the contrary, and it was about fame and fortune, and even a fair bit of showmanship, disgustingly enough.

The idea of a lobotomy was similar to the sort of thing the gal in the orginal post seemed to hope for her son -- remove the violent impulses, and allow the brain to become calm, allowing the person to go on to lead a somewhat productive life. The reality was often quite different. There are many infmaous cases where the patient was permanently incapacitated by the procedure, such as Rosemary Kennedy, whose story is made particularly tragic by the fact that she really wasn't that badly afflicted before the surgery was suggested).

I'm not sure how one can have little speech and interaction, but do OK in highschool.

Also, since this has repeatedly been likened to surgical castration, a question presents itself: what are the longterm consequences of drugs like Lupron? Will hormonal production return to normal if you stop taking it after months? years? decades?

The Geiers are not experimenting with Lupron; they're simply using it as a vehicle for making money. This claims are internally contradictory;

I don't know about the Geiers' claims in themselves, but it is clear from reading the testimonials that the _clients_ are not using the treatments for the reasons the Geiers claim. Remember, the Geiers claim that the purpose for the treatment is to prevent testosterone from binding mercury. However, it's obvious here that any reduction in aggression is the normal result you would get for reducing testosterone in anyone, and all they are doing is using Lupron as their hormone reducing agent. Using Lupron to treat aggression doesn't work because it affects mercury binding, and that is because testosterone does not cause aggression by binding mercury.

To the parents, though, they don't care. Notice they don't talk about whether their son's actual autism is improved, but only on the inappropriate sexual behavior. As long as that is better, then it's working, regardless of whether it is doing anything the Geiers say it is.

Lupron aside,often the only way to find out if an autistic child,or adult has an underlying genetic condition is to go to a DAN!.

Most mainstream doctors,and hospitals,still treat autism,as a if it were entirely a neurodevelopmental,or psychiatric disorder,100% of the time,in every single patient.So the majority of the small per cent of autistics,who have underlying conditions,like chromosomal,mitochondrial,and metabolic disorders will fall through the cracks undiagnosed.

I know,because I am one of them.In addition to autism,I have childhood diagnoses of all sorts of other things,like developmental delay,motor apraxias,learning disabilities, and personality disorders,on top of autism.

I also have a lifelong history of all sorts of serious medical problems,that nobody could find a cause for.In addition to a lot of the crap parents woo over at Age of Autism,I have both what was called "idiopathic" hypogonadism,and a lot of heart and circulatory problems. When I was eighteen,I started having severe heart failure. At 25,I was near death from this in a hospital ER.I was thought to have taken street drugs to cause this,I hadn't but no tests of any kind were done.The doctors I saw always gave me the "it's just a part of autism" line,because they only investigated common causes like congenital heart disease.

Last year,I was desperate enough to see a DAN! doctor.He agreed to do his standard group of tests,for new patients, and not see me again.This included a genetic panel,much like the one the Geiers have.I was found to have not only a Selective IgE Deficiency,but mutations on two entirely different chromosomes,a folate mtabolisim disorder with polymorphisms,on both MTHFR genes,a SLC46A1 mutation, homocysteines that were three times normal,and megaloblastic anemia.I was also found to have enough mutations on chromosome 22 that led to another hospital finding a 22q deletion.

The DAN! gave me an open ended prescription for MB12,and folinic acid,and in the year I have been on them,what has happened is nothing short of amazing.Not only is my autism greatly improved,and my anemia is under control,but at an age when most men are worring about grey hair,baldness, prostate and colon cancer,I have started to grow.Over six inches in the past year.I have started shaving.I am getting acne for the first time in my life.If that doesn't prove a metabolic correction has taken place,I don't know what would.

I have since seen a metabolic specialist at big university hospital where I live.The same one that gave me all this grief in the past.In order to see him,I had to provide proof of a metabolic disorder from test results.There are only two such specialists in the state,and all new patients who see them,have to prove they have an inborn metabolic disease to get in to see them.

I have since been able to get my mother tested,she has MTHFR related heart,and cerebrovacular disease similar to mine,and my autisic sister has a different 22q deletion.

The sad fact is,only a handful of doctors,like those at Massachusettes General,will do tests like this on autistics.This approach of throwing every possible genetic and metabolic test at someone with an autism diagnosis,who is seriously disabled,is the only way to really find out what is going on.Should every hospital do this?Absolutely, but not on every single patient,only on those who are not only autistic,but who have also have other serious developmental problems,who have a lot of other medical issues,or are intellectually disabled.There should be a standardized scale each hospital,or doctor uses to rate the probability someone with autism has a genetic disorder.

If a parent has an autistic child suspects the child has a genetic disorder,a DAN! may be the only practical option of finding out for sure.Ironic,because so many in the DAN!/ biomed community equate finding genetic causes with Nazi eugenics.If you have no other way of finding out,I would say,go to the DAN!,and have the tests done,but make sure you find one that uses a reputable lab,like TriCore.Get the tests,and don't go back.If the tests are abnormal,get a hard copy,and take them to a genetic councilor,or non DAN! doctor,who understands them,and then you can decide what to do.

But until there is widespread genetic testing for every autistic who needs this,this is the only real world option.

I think the whole idea of aggression being a feature of autism is bogus. I have written an essay comparing it to historic reports on the ferocity of the Tasmanian devil: "Vicious when poked with a stick." It is all too likely that autistic boys are subject to selective perception and double Standards, which exaggerate the significance of any agressive act. There's also a strong possibility of other children deliberately provoking the autistic and then lying about it. If any differences remain to be found after bias and dishonesty are controlled for, it can be chalked up to stress and frustration.

Freespeaker

One does not need an autistic child to feel this way. With any special needs child, it is quite possible to reach this point. We did with our son with CP. He saw the best pediatric neuro- and orthopedic surgeons and reached a plateau. Nothing was going to give him more physical functioning.

I am sorry, I didn't mean to imply that autistic children are the only special-needs children that need extensive care that isn't always obvious what they need. Perhaps I should have phrased differently.

Very sorry to offend.

upron aside,often the only way to find out if an autistic child,or adult has an underlying genetic condition is to go to a DAN!.

Most mainstream doctors,and hospitals,still treat autism,as a if it were entirely a neurodevelopmental,or psychiatric disorder,100% of the time,in every single patient.So the majority of the small per cent of autistics,who have underlying conditions,like chromosomal,mitochondrial,and metabolic disorders will fall through the cracks undiagnosed.

Actually, when there's an established underlying condition, mainstream doctors are perfectly willing to look for it (a la Rett's). What DAN! doctors do is make up lies in order to con you out of your cash.

The doctors I saw always gave me the "it's just a part of autism" line,because they only investigated common causes like congenital heart disease.

Somehow I severely doubt that doctors actually told you that hypogonadism or heart problems are "just a part of autism." They may well have said that they don't know the cause, but that's not even similar.

Last year,I was desperate enough to see a DAN! doctor.He agreed to do his standard group of tests,for new patients, and not see me again.This included a genetic panel,much like the one the Geiers have.I was found to have not only a Selective IgE Deficiency,but mutations on two entirely different chromosomes,a folate mtabolisim disorder with polymorphisms,on both MTHFR genes,a SLC46A1 mutation, homocysteines that were three times normal,and megaloblastic anemia.I was also found to have enough mutations on chromosome 22 that led to another hospital finding a 22q deletion.

To be perfectly blunt, you shouldn't put any credence in that at all. If a REPUTABLE doctor finds the same, maybe they're actually real - but don't count on them having any known meaning or treatment implication!

The DAN! gave me an open ended prescription for MB12,and folinic acid,and in the year I have been on them,what has happened is nothing short of amazing.Not only is my autism greatly improved,and my anemia is under control,but at an age when most men are worring about grey hair,baldness, prostate and colon cancer,I have started to grow.Over six inches in the past year.I have started shaving.I am getting acne for the first time in my life.If that doesn't prove a metabolic correction has taken place,I don't know what would.

Post hoc ergo propter hoc. Or put another way, N=1 proves nothing; only a large-scale study can distinguish the effects of the woo from the natural course of the condition.

The sad fact is,only a handful of doctors,like those at Massachusettes General,will do tests like this on autistics.

Actually not sad at all, since it's pointless and expensive at best.

This approach of throwing every possible genetic and metabolic test at someone with an autism diagnosis,who is seriously disabled,is the only way to really find out what is going on.

Sorry to burst your bubble, but there quite simply is no established relevance of such an approach.

But until there is widespread genetic testing for every autistic who needs this,this is the only real world option.

In the real world of today, no autistic individual needs such genetic testing, because the results have no known relevance to anything at all.

It is all too likely that autistic boys are subject to selective perception and double Standards, which exaggerate the significance of any agressive act.

With all due respect, David, I know I am not the most objective person to comment on this; But my son can be very aggressive (He can't communicate his needs, gets frustrated and lashes out.) when he is outside his comfort zone. There is never a time I don't have a bruise or scratch on my leg or arm. I don't personally know of any of my friends with normal-developing sons having such problems. But I have friends who's autistic sons have violent outbursts.

This is my opinion and experience FWIW, It is quite possible that I am wrong, but I don't think his outbursts are anywhere near "normal".

With all due respect, David, I know I am not the most objective person to comment on this; But my son can be very aggressive (He can't communicate his needs, gets frustrated and lashes out.) when he is outside his comfort zone.

Kristen - this is ultimately a characteristic of anyone who have trouble communicating their needs, though, right? I mean, my 20 mo old is going through this massively right now, where he can't communicate his needs, gets frustrated, and lashes out.

He is smaller than your son, and therefore his level of violence is more controllable, but it's the same thing going on. If we view autism as developmental delay, then your son is going through the same thing but at a very different stage of physical development. I agree that the combination may be a feature of autism, and that makes it unique in how to approach it, but the concept itself is well-recognized in development.

Pablo: There really isn't any cognitive dissonance here; rather there's a gigantic difference in world-view. The mercury malicia, and alties in general, are "who-thinkers" rather than "what-thinkers." The truth of a statement, to them, is based on whether or not the person making it is "on their side." Philosophically, their guarantor (the feature of their world-view that they use to evaluate truth) is the presence of an emotional connection with the person making the statement (note that salesmanship is all about making such an emotional connection).

Pablo,

I think we are in agreement. One would expect a toddler and two year old to act this way, but he is almost seven. So, while it is normal (and manageable) for my own 25 month-old, it is very difficult with my son.

I am certain he will grow out of it, than have teenage problems, than grow out of it again, in his own time.

I do very much agree with you that it is probably not a life-long sign of autism, just part of the developmental delay.

Thank you for your insight. I learn so much from this site and comments, I very much appreciate the information.

Kristen @47:
"my son can be very aggressive... when he is outside his comfort zone."

That sounds rather in line with my point, that "aggression" may simply be a result of stress. It also occurs to me that, to the descriptions "active" and "passive", it would be fair to add "reactive". A "reactive" response would be trying to remove or get away from his stressor.

On a more fundamental level, there's not much that can be done with just an individual case, unless it's observing how appearances may deceive. It is to be expected that autistics will have varying temperament and personality. The question is, is the range or distribution different from the general population?

Roger, while B12 and B9 deficiencies can be related to nervous conditions and anemia, if I'd start growing so suddenly after age 25 I'd see endocrinologist and have him check for acromegally, especially because it can be a side effect of a tumor.

Hang on - they're practicing medicine - where are their licences? All non-physicians should be imprisoned and fined for practicing without a license and any physicians should be disbarred, imprisoned, fined, and sued for unethical practices.

@Scott and Mu: don't worry about Roger, although I see his life story has changed AGAIN. And I'm sure, if he posts here long enough, his story will change again and again, just like it has on LB/RB and on Countering.

@Roger: so THIS time you are cured? Oh, this time it was anemia and short stature, not all the bowel problems that you cured (then weren't cured) by diet and supplements. You really make me sad. You apparently are a very unhappy person who goes from doctor to doctor to be cured...and when they can't cure you, you go find another. But your REAL problem is not curable. You are autistic. You will be autistic all your life. I wish for you to eventually accept that and move on and become happy.

I'd have a lot more time for the families if they admitted that they were castrating the boys to make their behaviour more manageable. If they truly can't cope, and have weighed the benefits and harms of the medication carefully, it's better than jumping off a bridge (and probably better than shoving the young man into a badly-run home or turning him out for the state to deal with). Of course, it would then need to be compared to other drug interventions for efficacy, closely monitored by respectable doctors, and this would probably make a lot less money for the quacks.

Most mainstream doctors,and hospitals,still treat autism,as a if it were entirely a neurodevelopmental,or psychiatric disorder,100% of the time,in every single patient.So the majority of the small per cent of autistics,who have underlying conditions,like chromosomal,mitochondrial,and metabolic disorders will fall through the cracks undiagnosed.

Wrong. Don't treat your one case as representative of everyone's practice across the country. I find myself testing frequently if the history fits, and if it justifies putting a patient through the discomfort of yet another test. But the shotgun approach to diagnostics certainly isn't the answer, either.

Roger @45:

often the only way to find out if an autistic child,or adult has an underlying genetic condition is to go to a DAN!.

You mean like the naturopaths, dentists, dieticians, homeopaths and chiropractors who are part of the DAN! network?.

Somehow I doubt their expertise.

I notice that Badillo says:"This is not castrating a kid. It's just lowering the [testosterone] levels enough to normal range so the kid is not aggressive."

Considering that the dose of Lupron in this case is *more* than for the cancer treatments -- which apparently DO completely "castrate" someone -- I would be very reluctant to believe that Badillo is correct here without some hard evidence -- like before-and-after testosterone levels with some sound statistics backing up her assertion that her child's level is "abnormal."

It unfortunately sounds like something she heard and is simply parroting.

Whether it's something the Geiers said, or whether it's what she thought they said, can't be determined from this evidence. Nor can we tell whether her son had testosterone levels that were really THAT far from normal. But if his testosterone levels were normal to begin with, and if the Geiers told her that this did not constitute "castrating" her son, they were lying.

An adult male with no impulse control is better off castrated - chemically or otherwise. The alternative is prison. Can we skip the "Oh noes! It's kinda sorta something to do with sex!" and get sensible? Most psychoactive drugs alter behaviour - almost by definition. Why get weird about something that inhibits testosterone? Because everyone has a right to be sexual? Give me a break.

I'd suggest that for aggressive, very poorly socialised adult males - whether it's autism or something else causing it - chemical (or even surgical) castration is a worthwhile behaviour-modification treatment, independently of mercury woo.

If it weren't for the fact that prisons are primarily about class (in the USA, race is a proxy for class), it would be very worthwhile to offer reduced sentences for individuals who undergo the treatment voluntarily.

Mr. Murray, you are an idiot who has no clue. The aggression of often only perceived, and many of the kids are children under the age of twelve:

For a child (9 years) who has progressed into the âpercocious pubertyâ stage with the added âbenefitâ of a pituitary gland tumor, are there any relevant studies (especially with respect to the cause)? I have read Dr. Geierâs article in Medical Hypotheses. I will be seeing an endocrinologist next week, but would like to do research in advance.

...

many autistic kids are entering puberty early (precocious puberty)⦠recommended approach is to lower testosterone, then remove mercury with chelation⦠puberty in autistic children is a ticking time bomb â need to get the mercury out before they hit puberty⦠insurance will most likely not cover chelation; but should cover precocious puberty (lowering the testosterone and monitoring it)⦠the Geiers are working with kids â the children must also be working with doctors (Iâm assuming DAN! dr) â heâs looking to work with kids that are between 6 and 10 years old, and have evidence of precocious puberty

...

Immediately after the 2005 Autism One conference, a mother described a case in which Dr. Mary Megson had administered Lupron to a nine-year old patient, on the premise that lowered testosterone levels would increase the efficiency of chelation:

I can assume you have not been following this as closely as many of us, and missed the fact that the chemical castration including young children.

Why aren't those ass-flavored funnel cakes in fucking jail?

A.Nuran, my thoughts exactly!

Kathleen Seidel notes one case of a woman being arrested for child abuse for unjustified use of Lupron. It seems to me this could be prosecuted as a sex crime.
My impression has been that there may be no more than ca. 200 recipients of this "protocol". If this is growing, action is needed. I suggest the following measures:
1. Report parents to CPS.
2. Report doctors to medical regulators.
3. Report the doctors to law enforcement.
4. Sue the doctors.
5. If one is willing to accept the consequences, break into the doctor's office, find and destroy all supplies of Lupron, do at least $10K in damage to the property, then surrender to the police with all the doctor's records you can carry.

The question is, is the range or distribution different from the general population?

I guess that would really be the question to ask. I suppose, perhaps one could say fairly confidently that tantrum behavior with frequent outbursts (similar to a toddler) tends to last far longer in autistic children (I would be curious to know if there is a larger number of autistics who are aggressive. But I feel there are much more important things for science to concentrate on right now).

I do think Gabriel is having a very hard time with the less structure of summer break. Because of budget cuts, his school kind of just cut us loose and in effect said "see you in September" (no summer programs).

I know very few autistic adults but the ones I have met are fairly calm.;)

I am furious at con men like the Geiers who have no scruples about preying on a vulnerable population.

I am sad and frustrated by parents like the Badillo's whose hearts are in the right place but their heads are up their asses (as one of my kids so inelegantly summed up a similar situation).

Based on the work I did with autistic kids as a trainer in a structured behavioral program, as well as having a child with aspbergers, parents like the Badillos not only subject their kids to treatments that they don't understand and that don't work, they also deprive them of the chance to learn the skills we all need to survive in this world. Constantly switching gears in their search for a "cure" they often substitute perceived short term gains for real long term gain.

It's tough. Raising any child is hard raising an atypical can be harder. Somehow some parents assume that if their child is "cured" s/he will instantly know all those things most of us don't have to be taught - like saying please or thank you or how to keep your cool when everything is going wrong or interacting easily with everybody in the world.
Doesn't work that way.

NT's may pick up on unspoken stuff more easily but even we can use reminders that "hey the humidity's about a million percent today and it's making all of us cranky." (This worked for my 9yo NT, but the 11yo Aspie sib got stuck on the reality that you can't have a million percent. So we read the barometer gave him an accurate pressure reading and reiterated the cranky bit).

A 3yo will grow into an 18yo and if you haven't been able to figure out a way to help him/her deal with the frustration and stress that is a part of everybody's life it can be scary and dangerous. (Removing stress isn't always possible - my high functioning Aspie, an 11yo college junior majoring in biochemistry and looking to go into paleoecology - melted down because he couldn't get his shoelaces tied to his liking. Yes he has crocs and sandals but he wanted to wear his sneakers.)

Medication may be a part of the support, but the Geiers aren't supporting anything but their bank account.

I'm very pleased to see this piece appear in the mainstream press. Maybe, finally, Dr. Geier's license will be questioned. It seems to have taken Trine's excellent articles in the Tribune to finally rouse the FDA to action on the issue of OSR. Blogging was ineffective, it seemed. Similarly, the Geiers' abuses have been extensively blogged, but nothing has been done. I was also very happy to see the piece picked up by the LA Times. The more publicity these clowns get the better.

The New Scientist chimes in:

http://www.newscientist.com/blogs/shortsharpscience/2010/08/concern-over-controversial-aut.html

Concern over controversial autism drug--Jim Giles, contributor

One of the most controversial and potentially dangerous treatments for autism has gained another small foothold in the United States.

I do hope the Geiers are put out of business.

By the way, Age of Autism has published several articles admiring the use of Lupron in autism treatment.

April 21, 2008: Mercury, Testosterone, and Autism -- A Really Big Idea

May 20, 2009: Autism and Testosterone

Regarding Calli Arcale's points about ethical quandaries... if the suggestion was to use Lupron as a direct means of countering testosterone-fired impulses in very severe cases of unchecked male aggression as a result of mental disability, then one could have this conversation. I'm still not sure it would ever be ethical... but it would be something that could be honestly debated. As Calli mentioned, if it means the difference between incarceration and freedom... well, that's a really difficult question that I don't know the answer to.

But the Geiers are asserting that this directly cures autism, rather than acknowledging that it is simply taking a sledgehammer to some of the more problematic symptoms. There's no conversation to be had about the ethics of that; it's sick, and they should be locked up for that kind of selfish deceptive abusive shenanigans.

What I was trying to get at was that if even if you strip away the Geier's misdirection and get to the only plausible way this could work, and then apply it to a truly worst-case situation (and there is considerable evidence they do not limit it to such cases), it's still not a clear ethical question.

This is, of course, not the way the Geier's are selling it, and it's quite clear it's being used in less extreme cases. In my mind, there is therefore no quandry -- it's unjustified. It may not even work; not all aggression is caused by testosterone, as can be demonstrated by assertive XY ladies with androgen insensitivity syndrome. And many of the testimonials are disturbing in the sense that, like many of the chelation testimonials, they report improvement the moment the needle goes in, which is impossible, showing that at least some of the cases definitely involve self-deception.

It's also worth pointing out that the Geier's aren't limiting this to males. They are using it on females as well, which makes even less sense. While females do have some testosterone in their bodies, it's orders of magnitude less than post-pubescent males. Which means these high doses are even more ridiculous in them.

Someone mentioned long-term risks. Many of the patients are pre-pubescent children, some quite young. In a young male, they may even prevent him from developing secondary sex characteristics. I guess this is okay if you want your son to resemble a castrati, but I would consider that a serious adverse effect. I do wonder how long it will take before such a case occurs and the family overcomes their humiliation long enough to sue.

A stray thought here; what if the problem is not excess testosterone, but heightened sensitivity to testosterone?

In a nine year old or a little girl? Did you miss the part that the Geiers were pretty much indiscriminately giving this particular diagnosis to young children, including girls?

And why are they giving *more* Lupron than what is used in prostate cancer ?

It's completely useless. The dose given to cancer patients already castrates them. Lupron is a LHRH superagonist - as such it shuts down testo production from gonads only - therefore it doesn't touch adrenal-derived production (what is called intracrine production). To get even lower testo tissue levels, your have to give a steroidogenesis inhibitor. Normally, cancer patients are given either an antiandrogen like flutamide, or a 5-alphareductase inhibitors that blocks the transformation of testo to DHT, the actual powerful androgen, in combination with Lupron.

But those Geier morons probably have a very dim understanding of endocrinology, so they think that if they give more, they'll achieve more suppression. How come idiots like this can get accepted, moreover licenced, from a legit med school ?

Having met her, I can confirm that Ms. Badillo is indeed a very scary woman. I can also say that this specific case isn't just a matter of a woman's desperation being taken advantage of. It's a matter of a woman's desperation and gullibility being taken advantage of.

This is the same woman who was pretty much nodding along as Dr. Bate advised us to use colloidal silver as a substitute for antibiotics and to use Vitamin C (at a dose of 16g/hour, as I recall; might have been 20) to treat colds, after all...

Some parents have castrated their children surgically. It's called "The Ashley Treatment" after a 6 yr old severely developmentally delayed girl who had a hysterectomy and bilateral ovarian removal, along with removal of her breast buds, specifically to stop her development and growth in order to make her more easy to care for and not worry about the possibility of an adult fertile female who is disabled and could be sexually abused.

The Geiers have been reported to the medical board in their state specifically for their unethical and fraudulant use of Lupron. I think it might actually be more effective to report them to Medicaid and other insurance companies for fraud for lying about the "precocious puberty" diagnosis.

storkdok -- I'm aware of that case. It's not really the same thing; they're not doing it under the delusion that it will improve her condition, nor to reduce aggression. Their goal is to stunt her growth and avoid menstruation, because they are already committed to a lifetime of 100% care. I'm not convinced they did the right thing, but in their case, there is zero chance of the child caring for herself in any way at all. She cannot even stand, and has a very limited awareness of the world around her. (I'm not sure how concerned they were about sexual abuse; making her infertile doesn't really prevent that, as most abusers are more interested in easy targets than attractive ones. But at least they wouldn't have to worry about what would be a very risky pregnancy.) A very difficult situation, in any case, and one that disturbs me. But they at least made their decision with open eyes. It is not comparable to what is being done by the Geiers, because their clients believe that it will actually improve their children in some way.

Orac, you really are dumber than I thought. This isn't castrating these children you dumb fuck, it is getting their high levels of testosterone (which were tested as high) down to normal levels (which were then tested again to be in normal range). These children are not being anywhere close to chemically castrated. Are you that big of an idiot? If a child measures high testosterone and has aggression issues and sexual issues, and then the testosterone is brought down to the normal level and the issues get much better once the levels are measured at normal ranges, what do you think happened? I'm tired of seeing your completely misguided and uneducated blog entries. One word....IDIOT!

You really are not very good are readying, STY. The Geiers don't do any real testing, they castrate the children just based on the stories of the parent.

@STY

I'm tired of seeing your completely misguided and uneducated blog entries.

So why do you keep coming back?

Just think, Todd, in only a few short months STY will reveal his actual data that will show us all once and for all! Oooh, can you feel the anticipation? It sends me into giggles, and full laughter.

Calli - I don't think the hysterectomy was for prevention of sexual abuse/pregnancy. It was for the fact there was a history of painful menses in the family, and since she'll never be able to make the decision to have children, it seemed the best option. They didn't remove her fallopian tubes, so hormone levels aren't affected.

@Chris

I am all a-twitter. The suspense is keeping me up at night. When, oh, when, will STY's great announcement and wisdom be revealed? Woe to all who would doubt such greatness as STY! In its enlightenment, STY has seen fit to withhold such world-shaking, Earth-shattering knowledge until we peons are deemed worthy. Verily will my mind go all asplodey when I hear the Great Secret that is to be revealed!

STY, if you honestly believe that, you don't know much -- at all -- about the pharmacokenetics of Lupron. Moreover, you don't know what the practical meaning of the doses involved is... which, frankly, is almost secondary.

@78

You think that giving doses superior to those given to cancer patients isn't castration ?

Then you know absolutely nothing about sex hormone endocrinology, moron.

Hi i would like to make a comment on this story about all you guys being appalled by the lupron drug that they gave to an autistic child. i have a 17 autistic nephew that has been having explosive aggression for the past 4 years( and prior to that but meds kind of contolled it) towards my sister which has passed away 3 years now and also towards other people and family!!!! my parents are looking after him now, they are 5f 3" both and he is 2 mtr tall and weighs 115 kg. he has smashed them uncontrolably scrached them , bit them, chased them to the point that they have to call the police every third day !!! They are at their wits end not knowing what to do with this child.he is on prozac, lithium, quatiapine, tegratol, depakote and nothing helps. we had started with less meds and then gradually increased them but to no avail. so people that dont have the same child or have no autistic child how dare they comment on what this mother did to stop her sons aggression, because believe me i have wittnessed it and also been hit noumerous times trying to help my fragile 65 y o parents and it aint easy at all. it is downright scary,its like watching a horor movie but at the same time u fell hopless and u cant fight back because u know he doesnt mean to do it!! believe me if i had the finances i would consider this because now because of my parents not being able to look after him being so dangerous he needs to go in a group home which my parents are so sad and crying about it every day on how will they give him away!!! so dont you dare judge people on their decisions when u have never lived with them and you dont know what they have tried to help their child before this med !!! beleive me my parents would be happier for daniel to be with them especially that his mother is no longer here with us, but this aggression is killing them both mentally and phyisically!! so next time think before you comment !!! i think if that drug really helped that my parents could look after him untill their health gives up on them!

frustrated

LG

@Lilly

What makes you think that not one of the people commenting here have seen or experienced an aggressive autistic child?

Please take your own advice and think before you comment.

Lilly,

Wow. So basically what you're suggesting is that the way to deal with the difficult, aggressive child is to essentially castrate him, in order to make it easier for other people to deal with your nephew.

This isn't a wild dog. It's a human being, for god's sake.

"Lilly,

"Wow. So basically what you're suggesting is that the way to deal with the difficult, aggressive child is to essentially castrate him, in order to make it easier for other people to deal with your nephew.

"This isn't a wild dog. It's a human being, for god's sake."

The other people he currently *attacks* are human beings too, for God's sake. Like Lilly said, "this aggression is killing them both mentally and phyisically!!" What do you suggest to stop him from attacking them? Or do you *not* want anything to stop his attacks, and want him to stay free to keep attacking them?

Amazing. Most people commenting here would rather see these young men put in a "special" home where strangers can wrestle them to the ground continually or quite possibly beat them into submission, than try a drug with possible side effects.

All this talk about SERIOUS side effects. Hymmmm I suppose they don't think jail or prison is serious? Oh, maybe they would rather see them thrown into prison. It happens, quite a lot. I'm visiting a very sweet, 30 year old autistic man in prison in March. He has beeen terribly abused in different institutions and prisons since he was 17. He will be there till he's in his 50's...for snapping one time...no previous criminal record at all and no he did not kill anyone. Well, guess prison solves the horror of whether or not we could have prevented him from having children. Having children in prison is really difficult for men. Only other men have sex with them. Usually against their will. But hey, we didn't medically castrate him right? That would have been horrible. Maybe when he gets out, he can get someone pregnant in his mid-50's and make everyone happy here, but I doubt it. He is really autistic.

I have a 15 year old autistic son who has changed into a different person entirely since puberty and no I have not tried Lupron but before I start looking for institutions, you can bet I'll look into it. As I'm sure most of these parents using Lupron have tried in desperation, we are trying everything else possilbe, for reasonable periods of time (like months), first.

Maybe you could step back, take a breath and give these parents a little credit for wanting what's best for their children. You don't seem at all compassionate to me. And as far as the big, bad, manipulating doctors theory goes, don't talk about parents like they are idiots. We know about controversy, we know about ambitious, greedy doctors also. You would be surprised at how much we are forced to know, learn and study. D.G.

Explain how the Geier's treatment is justified based on the science, not speculation, please.

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To kemist,
I'm not sure if you are really a chemist but you should really do at least a minimal amount of research before you start call doctors "morons". You are very unprofessional.

I have made only one phone call to Dr. Geier and already know that the first thing he does is put his patients on an antiandrogen. It's called Spironolactone. It is similar to the flutimide you are referring to. It's safe to try in low dosages and used quite a lot for hormonal acne in young adolescents and other things like hypretension in both men and women. He also does a tremendous amount of blood work (and is attacked of course, for doing too much) before he determines who qualifies or who would benefit from Lupron. Those with abnormally high testosterone levels get the Lupron.
Oh wow, no appointments with him at all and no plans even to use the Lupron and I'm already checking into the drugs used by this doctor. That means, I'm not a bumbling, crying fool who wants the magical doctor with the "cure all" stories to save the day. Really, it took only one phone call to know that. D.G.

Why do you think Dr. Geier is qualified? Does he have the expertise in biochemistry as a geneticist?

Where is the lab work done? Is it done by the Geiers or in a reputable lab.

I have made two posts here and no where did I assert that Dr. Geier is either qualified or unqualified. I do not do that without doing a substantial amount of research. I commented on the "kemist" calling him a moron for not doing something that in fact, the doctor does all the time. My son has never seen Dr. Geir but with almost no effort at all it's quite apparant there's a jump on the band wagon approach on sites like this by people who sometimes make false assertions.

Do you consider lab Corps a reputable lab? It's used by most reputable doctors and also used by Dr. Geier. Again, one phone call. His secretary will explain to you that that's where he would send you to get the quite voluminous amount of blook work done. If you want to though, you can assert that he tests far too much. Others have. And we as parents can consider and decide if we think that there's an angle to testing so much. And perhaps there is, but he would be attacked either way, whether he tested too much, or too little because what he is doing is unconventional and controverial...at least right now it is.

However, back to the original point. So called "professionals" are making FALSE statements here about what Dr. Geir really does and it takes very little effort to come to that conclusion. As a parent of an autistic child, I really don't have any more time to try to figure out why that happens so much or what the motivation is for that.

However, I will say that in the least it's very unfair to the parents out there who need to know more about any type of new treatment. I am a paralegal so I'm kind of use to doing research and understanding that you cannot just read something once and believe it but not everyone has that particular educational background. DG

"...All this talk about SERIOUS side effects. Hymmmm I suppose they don't think jail or prison is serious? Oh, maybe they would rather see them thrown into prison..."

I wonder how many people would rather see them handed Get Out of Jail Free cards for their behavior and would rather see their victims told "[he or she] has a doctor's note saying that [he or she] couldn't help it, so it doesn't count" or "how [he or she] treated you is a natural part of neurodiversity and you're a bigot if you don't accept it."

There's a spectrum ranging from autism to Asperger's to typical/normal possibly to William's Syndrome on the other side of typical/normal...

...and the woo-meisters exploiting ASDs have a spectrum too, ranging from anti-vaccination (even if more infants get infected and killed) to anti-social-skills (even if more vulnerable people get harassed and attacked).

"...Well, guess prison solves the horror of whether or not we could have prevented him from having children. Having children in prison is really difficult for men. Only other men have sex with them. Usually against their will. But hey, we didn't medically castrate him right? That would have been horrible. Maybe when he gets out, he can get someone pregnant in his mid-50's and make everyone happy here, but I doubt it..."

I've seen a discussion about whether or not he and others like him should have an entitlement to have sex with women:

http://astridvanwoerkom.wordpress.com/2009/11/20/should-forensic-psychi…

I wonder if how many really caring, sane people will read the last few comments and think....

well lets see, there's an autistic young man who has high testosterone...proven by blood work, done by yes...lab corps....and we know what abnormal testosterone levels do because we don't live under rocks and we can just look at a few famous news stories to see that... and they are not even autistic....and they, in fact, can and DO LOSE all control at abnormally high levels....sooo let's see....

I can lower the testosterone with a drug, which carries some risks...to him ONLY, like maybe he will have trouble having or maintaining an erection at 14....ORRRRR he stays out of control and he hurts or kills someone like his mom or sister or father like a few autistic boys did last year... or he goes to jail.....prison.... then of course he is easily abused...repeatedly......locked up for oh lets say 28 years for attacking someone with a knife.....hymmmmm

Okay I'm going to go with the lowering the testosterone to a normal level, calming him WAY DOWN....and keeping him home with his family who loves him...

Who the heck cares what that writer thinks about whether criminals in prison deserve hooker visits? I'm talking about doing medically what it takes to calm someone down who's testosterone is ABNORMALLY high so that he does not flip out and attack whoever is nearby.... in order to protect EVERYONE. There is a point where biologically someone CANNOT be treated behaviorally. ABA is a joke when you have LOST your mind but that does not mean that they have any control of it at that point.

Ask yourself why we do not imprison 5 year olds. There is a good reason. I am totally for punishing criminals who are mentally competent, understanding consequences like adults do. In fact, I'm totally in favor of the death penalty, but I would not consider putting a 10 year old child to death for anything. I may be looking for his parents to punish, but not him and there's good reason for this. Nor would I put a retarded person to death who did not have a clue as to what he was doing. It's just ridiculous and cruel.

Do you not know what high testosterone would do to you? It's not news that these kids have high androgen levels and it's not a secret that Geier just discovered. My son's dr just told me like it was just matter of fact...yes our kids have high androgen levels....let try sporonolactone. Okay then, lets try it...better than jail down the road. I'm not going to take a poll and see who thinks I should wait till he loses it and punches me. His possible, future erection problems can be dealt with at a later date by tweaking his meds, if in fact it ever is a problem for him.

@Debra Gravois and Betty. Yes, I read the comments. Yes, we know what high testosterone levels do. If you were going to a REPUTABLE endocrinologist who said your son needs treatment for endocrine issues, no one here would have a word to say to you.

But you are treating your son through the word of a doctor who hasn't even SEEN him? Who, by the way, is NOT a specialist in autism, endocrinology, or anything else besides OB/Gyn. Whose son, with a BS degree in non-medical sciences, is his assistant. Whose IRB is made up of his family and a woman who is part of the Autism Omnibus.

You are trusting your son to someone I wouldn't take a sick animal to. Would you take your son to a orthopedic specialist for a stomach ache? He might be an excellent orthopod, but stomachs are not in his field of experience, no matter what he claims to have learned. If he was a real stomach specialist, he would be board certified or at least, board eligible.

Or, you could simply come to me. After all, I have a MSN, and a degree in google-fu. I could treat your son about as effectively as the Geiers, and I would be a lot cheaper.

P.S. Labcorps is a very good, reputable lab. However, even good, reputable labs can have wrong results if tests are not drawn and transported correctly.

So, the answer on the "reputable lab" question is yes. It's Lab Corps. And as far as the jump to assuming lab corps messed up, that's not likely, considering Geier does the same testing every month, throughout treatment. Good grief, what do you want? It's a reputable lab. Was that not the question? Some reference was made to Geier doing the lab work out of his house. Weird accusations like that make me wonder about the motive of the accuser. It's just too weird.
You don't really think that only endocrinologists know how to read lab results do you? There's a normal range given by lab corps right next to the test results. Geneticists are usually very good at reading lab results and doing research in general. He is suppose to be responsible for getting the DPT changed to the DPaT. Not an easy feat to say the least and it probably explains his long list of enemies. Even the doctors my son had that knew the truth of what happened to my son, shuddered to think of what would happen to them if they dared say the things out in the open that they said to me in private. Money talks and the vaccine industry is huge. Who's wants to fight the drug companies and their money? Not me, or you. One head of Ped Immunology/Neurology told me she would be fired in a second for talking negatively about vaccines.

I have had some so-called reputable main-stream drs. look me right in the eye and say incredibly ignorant things. Some of my favorites we're when a Pediatric Gastroenterologist said "yes, autistic kids have chronic diarrhea. Why? oh we don't know." Nor did he seem to care. My son had been suffering with this for 3 1/2 years and I just wanted him to run some tests. Instead, he blamed autism for diarrhea and went on to other kids he better understood. Oh, here's one from a well-known, pediatric neurologist. "Im not willing to take your money like the other doctors are. Your son is retarded, and he probably will never speak". He offered no hope whatsoever in any area. Within a couple months, he was speaking in sentences with ONLY diet intervention. Milk gave him screaming migranes as he banged his head on the wooden floor. This inability to break down the milk protein does not show up on typical allergy tests so forget getting help from the main stream immunologist. Been there. If I hadn't gotten away from the neurologists, psychologists, psychiatrists, immunologists, etc... he would have just been doped up and probably mute. In general, main stream doctors know nothing about the biological treatments of autism. That is, until their kid's are diagnosed. Then they become real interested in really treating our kids, understandably so.

I am an adult who took Lupron (the monthly dose) ONCE for a small fibroid, and the drug destroyed my abdominal wall, which had been perfect before. I've had major surgery to try to fix it, at my own expense, but it's still not right. Nobody should ever try Lupron. It's notoriously dangerous; there are victims' groups all over the internet. Anyone who gives Lupron to a child should be jailed.

Debbie:

So, the answer on the "reputable lab" question is yes. It's Lab Corps. And as far as the jump to assuming lab corps messed up, that's not likely, considering Geier does the same testing every month, throughout treatment. Good grief, what do you want? It's a reputable lab. Was that not the question? Some reference was made to Geier doing the lab work out of his house. Weird accusations like that make me wonder about the motive of the accuser. It's just too weird.
You don't really think that only endocrinologists know how to read lab results do you? There's a normal range given by lab corps right next to the test results.

You missed one crucial thing which MI Dawn mentioned at the end of her post -- it doesn't matter how good the lab is if the sample was drawn poorly. There are ways to gimmick tests, and given that the Geiers are known to use shenanigans* with respect to mercury testing, I would be very cautious of accepting any claims they make about androgen testing.

*In particular, they will have children's urine tested for mercury levels, but they do this after first administering a chelating agent. While it's true that they compare against established reference values, the shenanigans come into play with the fact that the reference values are for *unprovoked* urine samples. The collection duration is also different from the reference samples, and consequently is rigged to produce a positive on pretty much anybody.

I have had some so-called reputable main-stream drs. look me right in the eye and say incredibly ignorant things. Some of my favorites we're when a Pediatric Gastroenterologist said "yes, autistic kids have chronic diarrhea. Why? oh we don't know."

Is that what he said, or is that what you heard? It is true that some autistic kids have chronic diarrhea. It's also true that some normal kids have chronic diarrhea, and also true that most cases will never have a cause identified and will eventually just go away on their own without doctors ever learning why.

I know for a fact that not all autistic kids have chronic diarrhea. My daughter has the opposite problem, for instance -- she's usually constipated. I'm inclined to blame diet in her case; she's been making real efforts to eat fiber, now that she understands why, but she just can't bring herself to eat fruit or very many vegetables. It's probably a phase, and given her motivation to try more foods in an effort to correct it, I'm not very worried about the long term.

However, I do not mistake this for meaning that all autistic children are like my daughter, and that the two conditions are inextricably linked. I think autistic children are more likely to *suffer* if they get a digestive problem, but not that they actually get such conditions at an unusual rate.

"Im not willing to take your money like the other doctors are.

Interesting that you had a problem with that. Me, I tend to be more wary of doctors who want my money badly enough that they wouldn't turn me away if they didn't think there was anything they could do to help. It's quite possible this doctor was wrong that there was nothing to be done, but if he didn't know what to do, why is it wrong for him to tell you that and suggest you not waste your money on him?

This inability to break down the milk protein does not show up on typical allergy tests so forget getting help from the main stream immunologist.

Well, yeah. Inability to digest a protein isn't an allergy so obviously it doesn't show up on an allergy test. Lactose intolerance is not an allergy at all; it's an inability to produce lactase. You may want to try yogurt (which has had the lactose broken down -- there's a reason yogurt is popular outside European bloodlines) or other milks (goat's milk is supposed to be easier to handle, but I understand it depends on the degree of lactose intolerance).

I totally believe you about the head-banging with milk thing. Autistic children, especially the severely autistic, have a very difficult time conveying what they are suffering and can become so distressed that they simply cannot contain themselves. And so their behaviors amplify many times, because only those behaviors can provide any degree of relief (as far as the autistic child knows, anyway). Figuring out that something's causing pain is challenging enough; it can be even harder to work out what it is and how to ease it. But once it is eased, it can make a world of difference.

Lactose intolerance does not run in my family, nor do casein allergies -- I have no personal experience of how uncomfortable that is. But other problems do, in particular gastro-esophageal reflux disease. When my daughter was diagnosed with GERD, the treatment made a real difference in her quality of life. She's been sleeping so much better since we started her on Zantac, and that in turn has made a huge difference in her school performance. So have other things, in particular the special ed staff; treating the acid reflux wasn't magic or anything. But hurting all the time will make anybody cranky, and that's not good for learning.

I am very suspicious of the Geiers, though, and as Anonymous has just indicated, Lupron is extremely dangerous. It should not be used merely based on an uncredited misunderstanding of the work of a famous autism researcher. I think you should educated yourself better as to what this drug actually does to people's bodies, because I doubt very much that the Geiers will tell you. After all, they're doctors who *do* want to take your money, and the truth could get in the way of that.

I dare you to post Robert Kennedy JR's article, "Deadly Immunity." You hold yourself up as a person of science, so explain this- How is it possible to have a genetic epidemic? This is what we have. To blame parents who are living with the unimaginable- (in greater and greater numbers) due to greed, ego, and the potential for huge and costly liability for drug companies- is a crime, and anyone defending it is acting immorally. Study both sides, you may learn something.

@toni

Necro much, idiot?

@Toni the Necromancer:

http://oracknows.blogspot.com/2005/06/saloncom-flushes-its-credibility-…

Please. RFK Jr.'s article was a fetid pair of dingo's kidneys, complete and utter nonsense mixed with lies.

toni, when your child gets strep throat do you take them to a medical doctor or a lawyer? Just wondering.

And if you want to talk immorality: I think it is immoral to lie. Mr. Kennedy's long ago article included many lies. There were several corrections, but he still lies about it.

I dare you to post Robert Kennedy JR's article

This is an odd attitude towards copyright laws.

@ Necromancy Tone Troll:

You do realize don't you, that by posting on this particular subject (chemically castrating of kids with autism), that we believe you are in favor of castrating kids.

I think you need to consult a medical dictionary for the meaning of "epidemic"...it applies to a disease, not a developmental disorder.

"Study both sides, you may learn something." We have studied in school science classes biochemistry, immunology, diseases (and developmental disorders). Some of us actually work as doctors, nurses, chemists and biologists and some of us also have experiences with our own developmentally disabled children.

My recently deceased child had a real rare genetic disorder and I have never heard of the incidence (1:10,000) of his genetic disorder be described as an "epidemic". He also had autistic-like behaviors as do many children who are mentally retarded. There is no higher incidence (or epidemic, as you foolishly labeled it) of autism. The reason why he survived until age 28 is because of the medical interventions that included preventive vaccinations against childhood diseases.

There are not "two sides", merely the body of science associated with studying autism and the anti-vax pseudoscience.

Go away now, go back to your anti-vax internet sites and stay ignorant.