UA research looks at detecting autism in rural areas

11 Jun

Most online discussion of autism prevalence focuses in a single number: the average. For example, the recent CDC estimate boils down to “1 in 88” most of the time.

There is a lot going on behind the average, though. For example there is a great deal of variation in prevalence state to state, between racial/ethnic groups and between rural and urban populations. These differences in prevalence point to the conclusion that we still are not identifying all autistic students (much less all autistic adults).

This is why there are a number of efforts to identify and bring services to under represented populations.

Alabama is one of the states that is included in the CDC prevalence estimates. Alabama is the state with the lowest prevalence estimate.

Which is why it is a good thing that the University of Alabama is working on identifying autistics in rural Alabama. This is discussed in UA research looks at detecting autism in rural areas

Here is an excerpt:

Current knowledge about autism spectrum disorders (ASD) allows doctors to identify patients with autism as early as 18 to 24 months old, but in places like rural West Alabama those diagnoses might not take place until children are 5 or 6.

Dr. Dan Albertson and his colleagues at the University of Alabama are in the midst of a study that they hope will shorten the amount of time it takes to recognize cases of autism at the rural Carrollton Primary Care Clinic in Pickens County.

In the study, children who show signs of autism at the Carrollton clinic will be asked to participate in a follow-up play session that is videotaped.

The videos are then sent to the Autism Spectrum Disorder Clinic in Tuscaloosa for further analysis, and doctors at the Carrollton clinic are then given feedback on any red flags for the disorder.

This study will help address the big question of how to efficiently screen a lot more kids for autism than we currently do.

The state with the highest autism prevalence estimate in the recent CDC report was New Jersey. Recently results were reported from a program to use staff in schools, specifically preschools, to help screen for autism in New Jersey. That study was headed by Dr. Yvette Janvier, former member of the Interagency Autism Coordinating Committee.

MMS, the apologists step in

9 Jun

MMS, or “Miracle Mineral Solution”, was presented at the AutismOne conference this year as the latest “cure” for autism. The idea (giving bleach to disabled children to rid them of non-existent parasites) is so bad that many stood up to decry the idea. A change.org petition was even created, No bleach enemas to “cure” autism in children!, which currently has over 1,300 signatures.

The idea is so obviously bad that my personal feeling was that AutismOne had failed to screen the talk before accepting it. I realize that after this long watching the autism/biomed world that sounds incredibly naive, but that was the truth.

I may be naive, but a long while back I gave up on reading the Age of Autism blog (AoA) regularly. After a long time hoping that there would be some trend away from the unscientific, damaging messages they continually put out I had to call it quits. But I still have email and people send me links. And sometimes one just has to follow the links. Like when I heard that AoA was defending MMS. I’m not naive enough to have hoped for public statement or an apology from AutismOne about promoting this. More like a quiet abandonment of an obviously bad idea. Like when people slowly moved away from a gentleman who would, for a mere few thousand dollars, review some video of your kid and tell you he/she was vaccine damaged (promoted by and a former advertiser on AoA). But this time the Age of Autism isn’t quietly accepting the facts. In the ironically titled “Autism One: Is There a Doctor in the House?” AoA defends MMS.

The arguments are actually fairly standard. Such as one can’t criticize MMS if one hasn’t been to the talk. (funny from a blog who recently bashed IMFAR without attending).

Here is another of the the standard defenses. Rather than discuss the issues head-on, build a straw-man:

It struck me as really odd that something most people at the conference didn’t even know much about had already been completely scrutinized by people who seem loathe the mere idea of medically treating a child with Autism (with anything but pharmaceuticals, apparently). It seemed obsessive and premature, to say the least, and it was eerily reminiscent of what happened with other interventions in the past.

Yes, it isn’t about safety of disabled children. It isn’t about the fact that the idea of using bleach (a bad idea on its own) to rid the body of parasites (which are not shown to be present in the children) in order to rid them of autism (which is not caused by parasites) is a bad idea.

Yes, “obsessive and premature”. Like those bloggers who wrote about chelation before the death of Tariq Nadama, the autistic child who was killed by IV chelation.

How is it premature, exactly, to look at a protocol (keep upping the dose until the kid starts to vomit, then back off) and say, “You know, this isn’t such a good idea”?

How ironic is it to defend a “therapy” which has no data showing it works, no plausible biological mechanism by claiming that others are “premature”?

Shall we go the standard arguments?

1) By Age of Autism standards anyone can be a lay expert by attending conferences and reading websites. Expert enough to act as a treating physician for one’s own children. But, you can’t be a lay expert (or, for example, a real expert on biology like Emily Willingham) if you disagree with a clearly bad practice like forcing disabled children to drink bleach.

2) Those who promote biomed are brave and use their real names. Those who don’t are “cowards” with fake names. Doubly ironic given that the blogger (who AoA won’t name) does use her real name and her copycats (an AoA spinoff) don’t. I challenge people to tell me how my writing has changed between when I was pseudonymous and now that I am publicly known. Over 1,000 signatures on Change.org….lot’s of real names there.

3) People are trying to “discourage” others from trying to “help their child” when the criticize certain biomed practices. In this case, people are trying to inform the public about a dangerous practice which has no good science and no real evidence to indicate it helps anyone.

4) “Anti-biomed folks always seem to forget that no one is claiming to have the cure for Autism.” Yes, they hide behind vague statements of “recovery” and “lost diagnoses” (as in the presentation made at AutismOne).

5) “Anyway, I tried not to let the blogger get to me, but admittedly, a number of times I found myself gritting my teeth thinking about how stupid she makes us sound.” Why are these discussions always about how smart people are? Anyone not smart enough to realize that being smart doesn’t mean one can’t make mistakes is, well, foolish.

6) Using authorities to claim that they must be right. In this case, she relies heavily on Martha Herbert, who spoke at AutismOne. “I also wondered if she considered Dr. Martha Herbert, MD a snake oil saleswoman.” I don’t recall seeing where Martha Herbert approved this therapy. I recall this news story, where Martha Herbert made it clear that she is not “an uncritical booster and fan of potentially dangerous unorthodox treatments”:

Herbert said she endorses the movement’s push to look at environmental toxins as a possible factor in autism and supports researching whether various treatments can improve the health of children with the disorder. Chelation, she wrote in an e-mail, “is a very special case” and should not be used “to praise or damn other approaches.”

In an earlier e-mail she wrote that she would sue the Tribune if she was portrayed as “an uncritical booster and fan of potentially dangerous unorthodox treatments.”

“I’m not defending chelation,” Herbert said in an interview. “I will sue you if you say that.”

Age of Autism writer Kim Stagliano has jumped to the defense of MMS as well with this comment:

When was the last time you saw an article on AofA deriding parents who put their kids onto Risperdal until they are obese or place them in resi care before trying a single biomed intervention? NEVER. It’s the difference between those of us with hope and aspirations and they who prefer to kick other parents to support their own choices. We should pity the parents who’ve given up using acceptance as an excuse for inaction.

It’s the same message that Jenny McCarthy put in her book and her AutismOne keynote speeches: “We are the ones with hope. Pity those who have given up” (or, as Jenny McCarthy more disgustingly put it, those who “like the attention” of having a disabled child and so do nothing).

The irony is just amazing in this comment. Ms. Stagliano moves directly from “We don’t deride others” into calling other parents pitiful. What is calling non-biomed parents “pitiful” and people who have “given up” and “using acceptance as an excuse for inaction” but derision?

I know I was naive. Hoping that with just a small amount of thought people would back away from something as clearly ill founded as bleach as a therapy. I had hope these people would do the right thing.

The MMR-Autism Controversy: Did Autism Concerns Affect Vaccine Take Up?

5 Jun

A presentation will be made at the 4th Biennial Conference of the American Society of Health Economics June 10-13 in Minnesota, entitled: The MMR-Autism Controversy: Did Autism Concerns Affect Vaccine Take Up?. The study reviews data from the National Immunization Survey from 1995 through 2006.

According to Science Daily, the study will report:

Interestingly, in the aftermath of the controversy, Chang found that the higher a mother’s education level, the less likely a child was to receive an MMR vaccination. In other words, college-educated mothers were less likely to have their children vaccinated than were non-college education mothers. This may be due to the fact that more educated mothers have better access and/or more quickly absorb medical information available in the media.

The researcher found that the decline in vaccination rates began with the now-retracted 1998 Lancet paper by Andrew Wakefield, and that it has had impact on uptake rates for vaccines in addition to MMR:

She also found that the controversy, begun with the publication of research (later discredited) linking the MMR vaccine to risks for autism in “The Lancet” medical journal, seemingly had a spillover effect to other vaccines — such as polio or other measles-containing vaccines — likely as a result of concern for safety over the MMR controversy.

While this involves a lot of correlation discussion, I can’t help but point out another correlation: the same group that are less likely to receive MMR vaccination (children of mothers with higher education levels) are more likely to have been diagnosed with autism.

Left Brain/Right Brain has moved

5 Jun

The move to wordpress.com has happened. A little faster than I was prepared for as I didn’t get the last few days of comments archived. LeftBrainRightBrain.co.uk points to lbrbblog.wordpress.com (at least for me) now. Links to old posts seem to be working. We’ve lost Kev’s beautiful design, but we still have his words archived. Let me know what problems you see with the transition. But with luck we will just be moving forward as usual.

Why does autism seem to attract everyone with a bad idea about causation?

5 Jun

This one just in: Merced doctor’s theory links autism to flood of electronic devices

But Oestreicher thinks the experiences infants have with electronic devices in their first year of life lead to one-way communication. Babies are then not able to develop social communication skills, leading to autism and related disorders, he said.

“During their first year of life, babies should be able to see the lips from the voices they hear, and that’s been a recommendation from the American Academy of Pediatrics for the last 20 years,” he said.

An infant’s first year of life is critical for them to develop social communication skills, he said.

If they don’t acquire those skills during that critical time period, children could end up developing an autism spectrum disorder, he added. “They will develop difficulties with social skills and become autistic,” he said. “They never learn how to socially communicate.”

Need I point out exactly why this is a pile of absolute rubbish? Tickle-me-Elmo makes kids autistic? Refrigerator-Mother-by-Proxy?

“My hope is that parents around the world will stop exposing their kids to these devices during infancy,” he said. “And that kids will no longer become autistic.”

He’s giving away the first 5,000 copies of his e-book. He’s overcharging.

The Merced Sun-Star (thankfully a small paper) really blew it on this one.

Left Brain/Right Brain is moving to a new home

4 Jun

Left Brain/Right Brain has been in existence for almost 10 years. It started as KevinLeitch.co.uk. Kev was fighting the good fight before I knew there was a fight. A fight for dignity and civil rights.

Kev’s site morphed into a dual site (anyone else remember when there were two parts to the site: Left Brain and Right Brain?). Left Brain/Right Brain became a group blog, with autistic and parent voices. Left Brain/Right Brain went on hiatus for a period but came back.

Many readers will remember how last year we outgrew our previous host. We had frequent outages. People helped out with donations, allowing the site to move to a premium host service. There was money for a year, and that year is up.

So, Left Brain/Right Brain is moving again. The site is built on WordPress and WordPress.org can handle the site without the outages that plagued it last year. In a few days Left Brain/Right Brain will move to <a href=”https://lbrbblog.wordpress.com”>lbrbblog.wordpress.com</a&gt;. LeftBrainRightBrain.co.uk will point to the new site. The site will lose the cool look Kev gave it but, as you can already check, the years of articles and comments are already there.

I look forward to seeing you all there.

Change.org petition:No bleach enemas to “cure” autism in children!

2 Jun

Emily Willingham and Jennifer Byde-Myers have started a petition on Change.org calling for a ban on the “MMS” therapy. This is the so-called therapy that involves making disabled children drink bleach or undergo bleach enemas. This was promoted at this year’s AutismOne convention.

You can read about it below:

Block peddling of bleach enemas as “cure” for autism in children

Greetings,

I just signed the following petition addressed to the US Food and Drug Administration, US Department of Health and Human Services, and the Federal Trade Commission.

Order cease and desist on selling, recommending, or administering Miracle Mineral Supplement, also known as MMS or sodium dichlorite solution (industrial strength bleach), as “curative” for children with autism when used orally, in baths, or in repeatedly administered enemas.

Here is what one autistic child underwent with this “treatment”–A parent writes: “He is nonverbal and fairly low-functioning, so I don’t get any feedback from him as to how he is feeling. Last week, I started him on 1 drop of MMS (bleach solution) then upped the dose to 1 drop, 2x a day this week. After about 4 days at 2 drops/day, he vomited once and had diarrhea all day. I am assuming it is the MMS. His gut tends to be very sensitive to anything I give him.”

A full account of the history of this product is available here: http://www.sciencebasedmedicine.org/index.php/bleaching-away-what-ails-you. It recently was featured at an Autism One conference: http://www.autismone.org/

In her Autism One presentation (here: http://www.livestream.com/autismone/video?clipId=pla_a7e0b96e-deb1-4399-9131-d1f6d0a23157), MMS peddler Kerri Rivera references effects such as diarrhea and fever during application. There is no medical indication for this compound, either orally or as a bath or enema, and no indications for its use or efficacy in autism. Among the recommendations for application of this substance in unconsenting, autistic children is the so-called 72-2 protocol, involving application of this bleach compound every 2 hours for 72 hours “every possible weekend.” More information about that is on Rivera’s Website, http://www.autismo2.com/mms.html.

Given the effects that even the people selling it cite–fever, clear discomfort, vomiting, diarrhea–and the use of it in minor children who often are unable to verbalize their experience, we ask that the relevant authorities turn immediate attention to Kerri Rivera, organizers of the Autism One conference where she presented this information, and anyone who is selling or recommending this product for use in children with autism.

Thank you for your time.

[Your name]

Lupron, soon to be a patented autism treatment?

1 Jun

Lurpon and similar drugs are used to reduce the production of sex hormones in the human body. These drugs are used to treat prostate cancer, uterine fibroids and precocious puberty. In the autism community, Lupron came to prominence as an alternative medical treatment for autism. The theory, put forth by father and son team Mark and David Geier, was that mercury in the brain was bound to testosterone, making it impossible to remove by chelation. By reducing the amount of mercury

The Geiers filed a patent for their idea. Here is the abstract for that patent application:

The present invention relates to methods of treating a subject diagnosed with autism or an autism spectrum disorder, lowering the level of mercury in a subject determined to contain a high level of mercury, methods of lowering the level of mercury in a child diagnosed with autism, lowering the level of at least one androgen in a subject diagnosed with autism, lowering the level of mercury and the level of at least one androgen in a subject diagnosed with autism and methods of assessing the risk of whether a child is susceptible of developing autism.

And their first claim (claims are the heart of a patent and claim one is the most important):

1. A method of lowering the level of mercury in a subject suffering from mercury toxicity, the method comprising the steps of:

a) administering to said subject a pharmaceutically effective amount of at least one luteinizing hormone releasing hormone composition; and
b) repeating step a) as necessary to lower the level of mercury in said subject.

Yes, it was all about mercury.

Well there’s good news and bad news on this front. Good news is that the patent office saw through the mercury angle. Bad news is that the patent application is still alive.

The original patent application had 109 claims. The first claim for the original application is above.

Here’s the new claim 1 (in case you want to skip the long paragraph of legalese, note that mercury is not mentioned):

1. A method of treating a subject suffering from autism, the method comprising the step of: a) administering to the subject a pharmaceutically effective amount of at least one luteinizing hormone releasing hormone composition to treat the autism, wherein the at least one luteinizing hormone releasing hormone composition is administered in a sufficient amount and over a sufficient period of time to control clinical symptoms of autism to a desired level, and wherein when the subject is younger than 18 years and said luteinizing hormone releasing hormone composition comprises leuprolide acetate, and the subject is administered a dosage of the composition of at least about 20 ug/kg per day for at least 28 days or said leuprolide acetate dosage is administered via a slow release formulation that releases said leuprolide acetate daily dosage over a 28 day period, and wherein when the subject is 18 years old or older than 18 years said luteinizing hormone releasing hormone composition comprises leuprolide acetate, and the subject is administered a dosage of leuprolide acetate of at least about 0.3 mg per day for at least 28 days or said leuprolide acetate dosage is administered via a slow release formulation that releases said leuprolide acetate daily dosage over a 28 day period.

Yes, claim 1 is very different. In fact, the patent application now has only 30 claims. None of which mention mercury. It’s a good guess that the patent examiner rejected a lot of claims.

The rest of the patent still has a great deal of mercury discussion. Patent examiners don’t usually require changes to the body of the patent, just the claims. The body included this statement:

It is known in the art that mercuric chloride binds and forms a complex with testosterone in vitro and possibly in subjects (See, Cooper et al., “The Crystal Structure and Absolute Configuration of the 2:1 Complex between Tesosterone and Mercuric Chloride,” Acta Crystallogr B., 1968, 15:24(7):935-41).

This was their “sheets of mercury and testisterone” theory. They showed that in the literature there is evidence of mercury binding to testosterone. Trouble for their theory is that the paper cited involves mixing mercury with testosterone in a beaker of hot benzene. The idea that this same process happens in the human brain was an amazing stretch of logic.

One of the many incredible leaps if logic in their story.

I don’t think either the Geiers or the patent examiner have spent much time at all on the body of the patent. Here’s a typo that’s propagated through multiple iterations of the patent over many years:

Today, humans are exposed to mercury from a variety of different sources, including dental amalgams, certain industries such as battery, thermometer and barometer manufacturing, ingestion of certain foods such as fish and shellfish, environmental pollution resulting from the use of fossil foods, prescription medicines, and from vaccinations and other biologicals, such as Rho immune globulin, containing thimerosal, a mercury-containing preservative.

Emphasis mine

Somewhere over the years they might have picked up on “fossil foods”, one would think.

The bottom line is that the Geier lupron protocol patent application is still alive, albeit in a much reduced form. If I recall correctly the manufacturer of lupron had a stake in the patent as originally submitted but they have transferred their stake to the Geiers. Apparently the company decided to get out of the lupron-for-disabled-children business.

The Geiers are left with the patent and whatever future royalties it would bring. Which I doubt will be much. It would be interesting to see how many of there talks fail to mention their financial stake, though. Are they informing parents and the doctors they are pitching this idea that they stand to make money off this?

Also of interest are the case histories included in the patent. At least one child had no indications that lupron was required. This is exactly the sort of practice that resulted in Mark Geier’s license suspended.

Lupron and similar drugs are powerful medicine. They have legitimate uses. When dealing with children it only seems prudent to work with a pediatric endocrinologist. One has to ask why the Geiers don’t refer children to the appropriate specialist. The sad answer is that pediatric endocrinologists probably would reject the diagnoses given by the Geiers.

Stem Cell “therapy” for autism: a warning

30 May

A recent news article focused on autism researchers who are also autism parents. One of the researchers in Autism scientists search for help, for their own kids’ sakes is Ricardo Dolmetsch, whose work on stem cells and autism was one of the highlights of IMFAR 2011 and was a focus of NIMH director Tom Insel.

He knows autism. He knows stem cells. And he has a very clear statement to offer on those offering stem cell “therapies”:

Dolmetsch says he also tries to answer questions from other parents who write to him for advice. Because there are so few effective treatments for autism, many parents turn to alternative therapies. In many cases, however, those therapies are ineffective, a waste of money or, even worse, dangerous, Dolmetsch says.

Recently, he has gotten a lot of e-mails from parents looking to go abroad for mysterious “stem cell therapies,” he says, including treatments in which practitioners offer treatments made with stem cells derived from fat, at a cost of up to $30,000.

“There are a lot of hucksters,” Dolmetsch says. “They’re springing up everywhere. … In the best case, it’s fraud, because they will put the cells in your body and they will be attacked by the immune system and die. In the worst case, they will cause something terrible, like cancer. … This has to be fraud, because we are not about to put stem cells in anybody’s brain. People are super-desperate. I’m just as desperate as they are.”

MMS, or how to cure autism with bleach. Brought to you by AutismOne

30 May

There are so many strange theories about autism which come and go that one doesn’t have the time to read up on all of them. Such is the case with MMS, which I now know stands for Miracle Mineral Solution. Recently the chatter on some of the yahoo groups I subscribe to increased with discussions of MMS and I just didn’t read what they were talking about.

Dr. David Gorski at Science Based Medicine did look into this. His article Bleaching away what ails you goes into detail about MMS.

To put it simply, “Miracle Mineral Solution” is bleach. Like many alternative medicine treatments, proponents of MMS claim it can help almost anything. Including autism.

If you unfamiliar with it, AutismOne is a parent convention with a large focus on claims of vaccine causation and alt-med therapies for autism. When Andrew Wakefield lost his medical license for unethical practices, he was given a standing ovation at the following AutismOne conference. When Mark Geier’s medical license was suspended, he also was given a standing ovation. Year after year one can hear discussion of the failed idea about how mercury in vaccines caused an autism epidemic. There are some presentations at AutismOne which appear useful (such as special education law), but the fact that they have such low standards for science and treatment topics trumps whatever good they might do.

As in the talk this year on MMS (38 Children Recovered in 20 months: Autism Treatment with MMS). Slides for the talk are online.

The talk has a lot of the usual warning signs:

1) claims of recovery substantiated by anecdotes and testimonials.
2) pseudo-scientific claims (in this case discussion of the chemistry of the molecules)
3) reliance on non-scientific explanation of autism (in this case that autism can be cured by ridding the body of parasites)
4) re-defining adverse reactions as expected and helpful.

And it is this last point that is particularly troublesome. Many alt-med therapies result in adverse reactions. Read yahoo groups and you will see them frequently. For MMS you will see vomiting and diarrhea. Parents discuss ramping up the dose of MMS until the child starts to vomit, then backing off.

The presentation from AutismOne includes:

It is common to find that the child gets a fever. This is very good.

As well as a claim that the adverse reactions are “Herxheimer reactions”. Herxheimer reactions exist–search the Mayo Clinic website and you will find it for when syphilis is treated with penicillin. You won’t find it for when a child is made to drink bleach.

Why would a child have an adverse reaction to MMS? Because it’s bleach. Here is an FDA warning on MMS:

FDA Warns Consumers of Serious Harm from Drinking Miracle Mineral Solution (MMS)
Product contains industrial strength bleach

The U.S. Food and Drug Administration is warning consumers not to take Miracle Mineral Solution, an oral liquid also known as “Miracle Mineral Supplement” or “MMS.” The product, when used as directed, produces an industrial bleach that can cause serious harm to health.

The FDA has received several reports of health injuries from consumers using this product, including severe nausea, vomiting, and life-threatening low blood pressure from dehydration.

Consumers who have MMS should stop using it immediately and throw it away.

MMS is distributed on Internet sites and online auctions by multiple independent distributors. Although the products share the MMS name, the look of the labeling may vary.

The product instructs consumers to mix the 28 percent sodium chlorite solution with an acid such as citrus juice. This mixture produces chlorine dioxide, a potent bleach used for stripping textiles and industrial water treatment. High oral doses of this bleach, such as those recommended in the labeling, can cause nausea, vomiting, diarrhea, and symptoms of severe dehydration.

MMS claims to treat multiple unrelated diseases, including HIV, hepatitis, the H1N1 flu virus, common colds, acne, cancer, and other conditions. The FDA is not aware of any research that MMS is effective in treating any of these conditions. MMS also poses a significant health risk to consumers who may choose to use this product for self-treatment instead of seeking FDA-approved treatments for these conditions.

The FDA continues to investigate and may pursue civil or criminal enforcement actions as appropriate to protect the public from this potentially dangerous product.

The FDA advises consumers who have experienced any negative side effects from MMS to consult a health care professional as soon as possible and to discard the product. Consumers and health care professionals should report adverse events to the FDA’s MedWatch program at 800-FDA-1088 or online at http://www.fda.gov/medwatch/report.htm.

One has to question whether AutismOne spent any thought about promoting giving bleach orally or rectally to disabled children before accepting this speaker. Seriously, how hard is it to consider that forcing anyone, and especially disabled children, to drink bleach is a bad idea?

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