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Does the Lupron Protocol hurt us trying to get insurance parity?

22 May

One of the big issues in the US autism community today is the quest for insurance coverage for autism. Many states are considering or passing laws right now on this very issue.

One question that comes up is how to address alternative medicine. Lawmakers don’t want to make an autism diagnosis a free pass to any and all therapies–be they real, experimental or bad.

So, take a look at the “Lupron Protocol”. This was discussed in a recent article in the Chicago Tribune.

For those who have been lucky enough to not hear about the Lupron Protocol, here is a brief history.

Professor Simon Baron-Cohen proposed a theory that autism might be caused by exposure to higher than normal levels of testosterone in the womb.

Mark and David Geier took this this idea, mashed it up a lot and mixed it with their concept that autism is caused by mercury. Their theory? Mercury binds with testosterone in the brain, forming crystalline sheets which are difficult to remove with chelation.

Utter and complete nonsense.

The Geiers then proposed that reducing the amount of testosterone in the system would allow chelators to access the mercury. They had found a way “to get the mercury out”. Removing the mercury, according to them, would result in improvement or recovery from autism.

Utter and complete nonsense.

Fast forward to today. The Geiers have set up “franchises” across the country to “treat” autistic kids with Lupron, a drug which shuts down testosterone production in the body.

Utter, complete and scary nonsense.

Insurance companies won’t pay for this. For one thing, they don’t usually pay for experimental therapies. Calling the Lupron Protocol “experimental” is just wrong. Experiments are controlled. The subjects are informed that the therapy is experimental and there is some oversight and there is an actual study going on. At best one could call the Lupron Protocol “alternative” medicine.

Or, one could call it, utter, complete and scary nonsense. Just my personal opinion.

Since the insurance companies will not pay for nonsensical autism therapies, the Geiers have decided that autistic kids have a very high incidence of early onset or “precocious” puberty. They test for this:

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

$12,000?!? I am trying to find out from a reputable source how much the tests to determine precocious puberty really should cost.

Note that they do a LOT of tests. If they get any single test which indicates precocious puberty, they diagnose and start treatment.

I am not alone in questioning these tests. Experts in precocious puberty have questioned them as well. From the Tribune story:

The blood tests the Geiers use as proof of excessive testosterone don’t show that at all, and other data they cite mean nothing, said Paul Kaplowitz, chief of endocrinology at Children’s National Medical Center in Washington, D.C., and an expert on precocious puberty. They also leave out test results that could help show whether the children are in early puberty, he added.

Looking at the tests, Kaplowitz said he asks himself: “Is Dr. Geier just misinformed and he hasn’t studied endocrinology, or is he trying to mislead?”

If the tests cost $12,000, how much do you think the treatment costs?

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

Yep, $60,000 plus per year. Again, I am trying to find out how much a legitimate course of Lupron should cost. Also, I am very interested to know how long a course of Lupron should take. Should it go on indefinitely, as apparantly the Geier protocol does? Or, is there some finite time involved?

Given the opinions of the actual specialists interviewed by the Tribune, it seems pretty clear that the Geiers are neither treating mercury poisoning nor precocious puberty. What they are doing is charging for a lot of expensive tests and even more for a long regimen of Lupron.

Is it any wonder that the insurance companies are balking?

Is there any question that this will make it harder for the rest of us to get real insurance parity for people with autism?

Autistic boy killed with ‘chemical cosh’

21 May

Disability Scoop reports today on the awful story of an autistic child killed at a group home:

Denis Maltez, who had autism, died in 2007 at age 12 after being restrained by staff members employed by the group home where he lived in Miami. An autopsy determined that he was experiencing serotonin syndrome, a condition where the body produces too much serotonin, the chemical that regulates a person’s mood. The syndrome can be caused by a combination of psychiatric medications.

….

“This is a clear case of a 12-year-old child who perished because he was given a lethal combination of off-label, dangerous, anti-psychotic drugs to control his behavior without appropriate consent, administration and supervision,” said Howard Talenfeld, Quesada’s [the boy’s mother] attorney. “Tragically, this case is one of many cases where foster children and developmentally disabled children are given powerful drugs to control their behavior instead of utilizing appropriate behavioral interventions.”

With echoes of the inappropriate ‘care’ dolled out to Jesse Moores, this seems to me another example of a young person with special needs treated with scant thought or care. Its sickening that there seem to be so many of these stories on both sides of the Atlantic recently. I sincerely believe that there needs to be an _international_ coalition of voices – made up primarily of autistic people and their immediate families – to offer oversight on how autistic people are treated. This cannot be allowed to continue. Closing down homes, jailing perpetrators etc _after_ the fact is all well and good. We need something proactive not reactive.

Lupron called ‘Junk Science’

21 May

It was only a matter of time before the big papers caught on to some of the quack treatments being pedalled by certain (in)famous autism doctors.

The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” (said Professor Simon Baron-Cohen)

“It has become a cottage industry of false hope, and false hope is no gift to parents,” said Autism Science Foundation President Alison Singer, whose daughter has autism. “A lot of these therapies have no science behind them. You are using your child as a guinea pig.”

I blogged earlier this month about the Geier’s at a conference and their totally unsubstantiated claims at this conference:

they are also claiming that they have ‘found that testosterone blocks the body’s ability to make glutathione’. Searching PubMed for ‘lupron glutathione’ returns no hits at all. So where have they found this? Under the stairs? Why aren’t they publishing this science if they’re so sure?

The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development, in 80 percent of the autistic children in their clinic.

Which is yet another unverifiable statistic. A search of PubMed reveals just one study relating to precocious puberty and autism and that showed _no_ link.

Mark Geier said laboratory tests at his clinic show that after just three months on Lupron, autistic children improved in dozens of cognitive and behavioral ways. This just seems another figure pulled out of thin air. Theres nothing anywhere to support such an idea and if they’re so sure why haven’t the Geier’s published?

“In terms of science, there is nothing suggesting the most basic elements of what they are talking about,” said Tom Owley, director of the Neurodevelopmental Pharmacology Clinic at the University of Illinois at Chicago and a specialist in the treatment of autistic children with medicine. “That there are high levels of mercury in autism — not proven! That they have precocious puberty — not proven!”

Hilariously…

Mark Geier responded that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment. David Geier said prominent scientists support their work and gave as an example Baron-Cohen, the autism expert who told the Tribune that the Geiers’ Lupron treatment filled him with horror.

So Mark Geier is either a liar or badly informed. I know what my opinion is.

AutismOne – the huge Chicago based autism woo fest kicks off today and the Geier’s are scheduled to talk about their miracle drug. They’ll be talking largely to people already sold on the idea that screwing with their kids bone density and hormonal growth is a good thing as long as it helps with their kids autism. Trouble is, it doesn’t.

Bravo Age of Autism

20 May

Yep, you read that correctly.

In a recent blog post on the Age of Autism blog, Dr Lorene E.A. Amet wrote about “Testosterone and Autism”. While much of the piece seems to be fighting a straw man (the theme is that Simon Baron-Cohen wants to use testosterone to screen for autism prenatally–without a link to the story or a quote from SBC, I found this difficult to wade through). But, as part of her piece, Dr. Amet wrote:

It is of great concern that studies on testosterone and autism are being misinterpreted, leading to the use of therapies aimed at disturbing steroid hormone production in individuals with autism. Currently, many autistic children may be being treated, without proof of safety and scientific and medical evidence of benefit, with a view to reducing their hormonal secretion of testosterone (Lupron Therapy, Spironolactone). The rationale behind advocating these therapies appears to be based on a misunderstanding of autistic behaviours and without systematic laboratory evidence of abnormal testosterone levels.

I had to double check that I was reading the right blog! I mean, Age of Autism allowed someone to state that the the rationale behind using Lupron to treat autism is “based on a misunderstanding”.

For those who are lucky enough to not know, Lupron as a treatment for autism is the pet project of Mark and David Geier. These are near heroes to the world of Age of Autism, due in large part to their promotion of REALLY bad epidemiology (for example, here, here and here on Epiwonk’s blog) to support the thimerosal/autism link.

The Geiers took the testosterone theory of Dr. Baron-Cohen and ran with it. Ran without knowing what they were doing or where they were going. Somehow they came to the conclusion that Testosterone binds with mercury in the brain, making it difficult to remove the mercury with chelation. Reduce the testosterone in the system, they guessed, and one could get the mercury out. Since in their world autism is caused by mercury, this will “recover” or “cure” people of autism.

Doesn’t make any sense to you? That’s because it doesn’t make any sense. At all.

Even though the idea of using lupron is misguided and potentially dangerous, that doesn’t mean that the groups that sponsor the Age of Autism blog would be willing to out the Geiers, even without specifically naming them, for the unscientific team that they are.

To be honest, I think the Age of Autism editors just missed that paragraph by Dr. Amet before approving it to be published (if they approve at all).

But, it’s there now for all to read. Bravo Age of Autism. Bravo for joining the world of people who find the Lupron Protocol to be based on a “misunderstanding” of the science.

Australian Autism Group block autistics

20 May

I got this from an online friend and member of ASAN Australia.

A4 LOCKS OUT AUTISTIC MEMBERS

STATEMENT CONCERNING A4 – AUTISM ASPERGER ADVOCACY AUSTRALIA

ASAN AUSTRALIA understands from its members that as of today all Autistic members have been exclude from the Steering Committee of A4 (Autism Asperger Advocacy Australia) which has now been renamed the A4 Advisory Group. Convener of the A4 Advisory Group Bob Buckley states in an email to all A4 members:

“A majority group decided to separate itself from a minority dissenting group (formerly in A4 SC) who do not accept and object to long-standing polices and practices of the A4 SC.”

This minority dissenting group just happens to contain all of the people with a diagnosed Autism Spectrum Disorder that sat on the A4 Steering Committee up until 18/5/09. This minority group has long been battling to be part of the national voice that is A4 and now finds themselves excluded from the very group that once claimed to represent them.

ASAN AUSTRALIA finds this situation unacceptable, reprehensible in fact. We suggest that in light of this move A4 not be seen as a legitimate voice for those on the autism spectrum. Nothing about us without us.

An ASAN AUSTRALIA Convener can be contacted for comment via autisticadvocacy@gmail.com

This is a very silly move. I’ve emailed A4 to see if they have any comment regarding the issue.

Jenny McCarthy’s son was never autistic?

20 May

A provocative piece in the National Post suggests that very thing.

It is not even certain that her child ever had autism; neurologists have pointed out that her description of the symptoms, and recovery, are more consistent with a rare disorder, Landau-Kleffner Syndrome. Ms. McCarthy may thus be trumpeting a “cure” for a disease of which she has no parental experience.

More than a little interested I tracked down this Letter to Neurology Today.

In After Vaccine-Autism Case Settlement, MDs Urged to Continue Recommending Vaccines (June 5), Dawn Fallik correctly cites Jenny McCarthy as a celebrity fanning the flames of the vaccine-autism link. McCarthy also makes parents think that autism can be cured with unproven treatments – as she claims is the case with her son – documented in her much publicized book, Louder than Words: A Mother’s Journey in Healing Autism (Dutton 2007).

Unfortunately, what the public does not realize as well as perhaps McCarthy is that her son was most likely misdiagnosed with autism in the first place. His disorder began with seizures and, subsequently, with the seizures treated, he improved. This would be more consistent with Landau-Kleffner syndrome, which often is misdiagnosed as autism.

Daniel B. Rubin, MD, PhD

OK, so next stop Landau-Kleffner syndrome.

It is characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electroencephalogram (EEG). LKS affects the parts of the brain that control comprehension and speech. The disorder usually occurs in children between the ages of 5 and 7 years. Typically, children with LKS develop normally but then lose their language skills. While many of the affected individuals have clinical seizures, some only have electrographic seizures, including electrographic status epilepticus of sleep (ESES).

…..

The syndrome can be difficult to diagnose and may be misdiagnosed as autism, pervasive developmental disorder, hearing impairment, learning disability, auditory/verbal processing disorder, attention deficit disorder, mental retardation, childhood schizophrenia, or emotional/behavioral problems.

And is Rubin right? Did Jenny McCarthy’s son Evan’s illness begin with epilepsy?

“I found Evan seizing in his crib,” she told ABC’s Deborah Roberts. “He was foaming at the mouth and his eyes rolled back.”

McCarthy rushed 2-year-old Evan to the hospital. After a few days of multiple seizures, doctors concluded that Evan had epilepsy, but McCarthy was not convinced. Her maternal instinct told her that something was still wrong.

Angry and skeptical of the medical advice she had been given, McCarthy went to a second neurologist who gave her an earth-shattering new diagnosis: Her son has autism.

So yeah he is. Evan’s first presentation was epilepsy.

Not exactly enough to give anything approaching a definite answer but still, interesting. I wonder who diagnosed Evan.

Autistic man tortured

19 May

If you’re the parent of an autistic person, or if you’re an autistic person then this story is nigh on unreadable. But read it we should and must. Everytime someone says they;ve had enough autism awareness then point them to this story, horrifying as it is.

As a mentally challenged man screamed and pleaded for his torture to end, his attackers held him down, shot him repeatedly with paintball and BB guns, and branded him with searing coat hangers. “Mommy, mommy,” the victim screamed, to no avail.

Here was a 21 year old autistic man who had challenged himself enough to be holding down a job at a local food processing plant in Alva, Oklahoma, USA. And ehre also were three other ‘men’ who wanted to make a ‘Jackass’ style video. But rather than just use their own bodies, they thought it’d be good to take advantage of someone who was vulnerable.

The video depicted Wallace [one of the attackers] and others branding the letters B, M and C into Dahling’s chest, the affidavit states.

Wallace told police those letters stand for boredom, mayhem and chaos, Orcutt [police representative] said.

During the branding, the victim is heard screaming, “No, no, no, stop it, I don’t want to go through any more pain,” according to the affidavit.

After being shot several times with the BB pistol and another gun, the victim cries and attempts to leave, but is cornered by Wallace and another man and told to get down or he will be shot again, the affidavit states.

He screams, “I’ll be good, I’ll be good” but Wallace uses the gun barrel to push the man’s head to the floor, according to the affidavit.

In another scene, Dahling is shot several times with a paintball gun, then lifts his shirt to reveal welts.

What do you do with ‘men’ like this? According to the paper, the ringleader has previous for torturing an animal and abusing a two year old. What a big brave guy. I can only hope that ‘men’ like these are in the minority and that they get exactly what is coming to them by way of a long jail sentence.

A Neurodiversity FAQ

17 May

Following Ari Ne’eman’s interview in Newsweek being published yesterday, a storm of blog posts about him, autism and neurodiversity in general have appeared. There is a series of comments on the Newsweek forum featuring that bastion of idiocy and bigotry, John Best and sadly, even someone I respect a great deal, Jonathan Mitchell, has stooped to equating autism with sexual abusers. With that in mind, I want to re-post (with slight edits) an old post of mine about what I see neurodiversity as.

Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.

*1) Neurodiversity proponents are anti-parent.*

False. I’m a parent. I’m parent to 3 kids of whom two are NT and one is autistic. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen Seidel is a parent. Camille Clark is a parent. Anne Bevington is a parent.

*2) AutAdvo makes up the entire population of Neurodiversity proponents.*

False. There are literally hundreds of websites with thousands of participating autistics of all ‘levels’. The vast majority advocate acceptance. There are also a very large number of NT parents who advocate Neurodiversity. The desire to ‘cure at all costs’ autism is heavily weighted towards North America.

*3) Neurodiversity proponents say we should not treat our kids.*

False. This is one of the biggest points of contention. The issue is one of autism (the main point) versus comorbidities (side points). See the WikiPedia definition of comorbidity. What are some comorbidities? Gastric problems, ADHD, ADD, Depression, migrane. Why would you imagine we don’t want you to treat these things? These things are not autism. They are comorbidities of autism. They cannot be used to illustrate or define autism as they are not common to every autistic.

Don’t take my word for it. Go ask the Doctor who diagnosed your child.

We see your error as the failure to differentiate between the comorbidity and the autism. To us, one is treatable. The other is not. We do not fight for your child’s right to have gastric issues.

You see our error as trying to prevent your child being treated. My own daughter receives PECS and Speech Therapy. I would not stand in any parents way who wanted to alleviate the suffering of their kids. Having terrible constipation is suffering. Having a different kind of thought process is not.

*4) Neurodiversity proponents who are autistic are different than my child.*

True. They are mostly adults. Your kids are kids. However I don’t think thats your point. You believe that all autistic Neurodiversity proponents are ‘high functioning’. This is untrue, both now and historically. The facts are that for a lot of the autistic adults in the Neurodiversity movement their diagnosis was ‘low functioning’ when they were kids. But people grow and progress. Autism doesn’t stop progress, it just sets a different timetable for it. These adults are living breathing proof.

*5) Neurodiversity proponents are full of hate.*

I was bemused to read posts that castigated us for hate speech. Here’s an excerpt from an email I was sent in the year 2005 from someone who hid their identity. This person (who had a Bellsouth IP address) had an in-depth knowledge of Evidence of Harm and although they never said so, that they came from EoH is beyond doubt – I received this email to my Yahoo spam account immediately after making a few posts myself on EoH.

Your retard daughter should just be fucking put down – shes no autist. Little bitch.

And racism? A member of Generation Rescue (or so they claimed) told me to:

…sit next to the nearest Arab with a backpack.

Alluding, of course, to the recent London suicide bombings, this person makes racist generalisations about Arabs as well as wishing death on me.

Ex-Generation Rescue Rescue Angel John Best Jr [John has pointed out that he is now no longer a member of GR] has said that all parents of autistics who don’t chelate their kids are child abusers. Lujene Clarke of NoMercury told me that I was mentally ill because I said I had autistic relatives. My EoH debut was preceded by EoH list members referring to me as an idiot. I’ve been told I’m in the pay of Pharma companies, that I’m stupid, that I’ll go to Hell, that I’m in denial. My autistic friends have been told they are sociopathic, that they have personality disorders, that they aren’t really autistic.

*6) Neurodiversity proponents say we don’t love our kids or want whats best for them.*

False. I have no doubt that you all love your kids just as much as I love mine. I’ve not seen any neurodiversity proponent claim you hate your kids.

What we say is that we think your love for your kids has blinded you to the reality that autism itself is not a problem to overcome but a reality to share with your child. We think that in your honest desire to do the best for your child you are desperate to treat the wrong thing. We also feel that some of the things you use to treat your kids are dangerous. I’ve recently read a post by a woman enquiring about treating her child with Hydrochloric Acid. I’m on record as saying that its no-ones place to tell others what they can and cannot do to treat their kids but by that same token, I feel obliged to point the very real dangers to both your children’s health, your own bank balance and the very future of autism treatment research.

I believe the world should change for the good of my (and yours) child. I don’t believe my child should meekly inherit the mantle of ‘second class citizen’. I see it as part of my job to fight for her right to get the help she needs and at the same time, be who she is.

There are so many better fights than this one you’re on. Better education, better care, better interventions, more rights, more respect. These are the things your child (and mine) will need as they continue to grow.

We’d like you to respect your child’s autism as something unique. We’d like you to treat your child with the medical interventions for their comorbidities that they may need to progress. We’d like you to realise that your children will grow up and if they were autistic then they still will be. We’d like you to think about the strong possibility that one day the autistic adults on AutAdvo might be your kids and another set of parents who believe something passionately will be insulting them by denigrating their worth and their neurology.

You believe thiomersal did your kids harm. You may be right. I doubt it, but you may be. What it definitely didn’t do though is cause autism. This is at the heart of what makes some of us angry in respect of this issue – treat your kids if they are mercury poisoned but please stop propagating so much negative stigma with constant references to autism being mercury poisoning.

*7) So why do neurodiversity proponents say they speak for my child?*

The way I see it is like this – I and my wife know our daughter better than anyone else alive. Whilst she is a child, we speak for her in all matters. But the fact is that she is autistic. It therefore is simple common sense that other autistics have thought processes closer to those of my daughter than any NT does. They think in similar ways. Its not a case of speaking *for*, its more like having a shared reality. If one or more of my kids were gay than I would still speak for them in all matters whilst they were children but not being gay I could not share that reality in the same way as other gay people could. By virtue of their shared reality of autism our kids and autistic adults share an area of being that NT parents can never share. Like it or not, that does give them a commonality and communal existence. With that community sometimes comes a voice. Can you really say, as NT parents, that you are closer in thought process to your kids than autistic adults? When it comes to what makes autistics tick can you really say that you as NT’s know better than other autistics?

Ari Ne’eman on autism

16 May

Ari has had a quite wonderful piece on him in Newsweek. It takes on the hard questions for Ari and he answers them with the aplomb that has come from years of hard work of learning to be an excellent networker:

Ne’eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. “People who see Ari today have no idea where he’s been,” she says. As a young child, Ne’eman was verbally precocious but socially challenged. “I didn’t understand the people around me, and they didn’t understand me,” he says. He was bullied and ostracized—back then he didn’t look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. “I think the word ‘freak’ may have come up,” he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne’eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he’s learned to play along. Still, none of it is easy. “You come out of a meeting and you’ve put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases,” he says. “Even if you learn to do it in a very seamless sort of way, you’re still putting on an act. It’s a very ex-hausting act.”

This is a common attack tactic from people like Jake Crosy at AoA or Harold Doherty. They demean the efforts that autistic people such as Ari have needed and still need to put into their lives to advocate for their own beliefs in favour of the promotion of their own limited and limiting set of autism related beliefs. But as history has shown, its people like Ari – those who are willing to be openly challenged about what they think who will win the respect of people.

Well done Ari, I’m proud to think that you are representing all manner of people on the spectrum, from the very high functioning Jake Crosby to the very low functioning such as my daughter. Thank you.

Autism Science Foundation, Science and Sandwiches

14 May

May 12th saw the first ‘science and sandwiches’ day. Featuring Dr. Ami Klin of Yale who recently published in Nature, the day was session was apparently a great success.

I was heartened to see ASAN‘s Ari Ne’eman in attendance as this reinforced my opinion that ASF are determined to include autistic people and listen to an autistic agenda. Further reinforcement came from the reporting page on the ASF website:

Discussion revolved around this new work’s [Klin’s study] role in both diagnosis and treatment, as well as the importance of respecting the individuality of people with autism.

Inserts mine

Good. Very good to hear. Two thumbs up. Excellent. Round of applause. Should I go on…? No, possibly not.

Anyway, this has been a good year for autistic advocacy I think. A major website has actively sought out and employed an autistic writer for its autism pages and now what will be a major scientific force within autism is listening directly to autistic people. Long may it continue.

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