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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?

Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications

25 May

A study just out from US National Institute of Mental Health researchers analyzes a survey they performed. Even today half of sad children identified are not diagnosed until after age 5. Half of autistic school age kids are using some form of psychotropic medicine.

The study is discussed here:

Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications

And that discussion is quoted below:

Fewer than one out of five school-aged children with special health care needs were diagnosed with autism spectrum disorder (ASD) by age 2, according to new data from an NIMH-funded study. These diagnoses were made by a variety of health care providers, and most children in the study used multiple health care services (such as speech or language therapy) and multiple medications.

Background

Identifying ASD at an early age allows children to start treatment sooner, which can improve their later development and learning, and may also reduce a child’s need for specialized services or treatments later in life.

To determine the experiences of school-aged children with special health care needs, Lisa Colpe, Ph.D., M.P.H., and Bev Pringle, Ph.D., of the NIMH Division of Services and Intervention Research, collaborated with colleagues who conducted more than 4,000 telephone interviews with parents or guardians of a child between the ages of 6-17 who had a confirmed diagnosis of ASD, intellectual disability, and/or developmental delay.

These survey interviews were a part of the Pathways to Diagnosis and Services Study, sponsored by NIMH using funds available from the American Recovery and Reinvestment Act of 2009 (Recovery Act). Additional collaborators on this project include the National Center for Health Statistics at the Centers for Disease Control and Prevention (CDC) and the Maternal and Child Health Bureau at the Health Resources and Services Administration (HRSA).

Results of the Study

Key findings include:
The median age when school aged children with special health care needs and ASD were first identified as having ASD was 5 years.
Those identified as having ASD at younger than 5 years were diagnosed most often by generalists (such as pediatricians, family physicians, and nurse practitioners) and psychologists. Those identified later than 5 years were diagnosed primarily by psychologists and psychiatrists.

Nine out of ten school-aged children with special health care needs and ASD used at least one health care service, such as behavioral intervention or modification services, sensory integration therapy, cognitive based therapy, occupational therapy, physical therapy, social skills training, or speech or language therapy.

Social skills training and speech or language therapy were the most commonly used service, each used by almost 60 percent, or three out of five, of these children.

More than half of school-aged children with special health care needs and ASD used at least one psychotropic medication. “Psychotropic medication” refers to any medication used to treat a mental disorder.
Almost 33 percent of these children used stimulant medications
25 percent used anti-anxiety or mood-stabilizing medications
20 percent used antidepressants.

Further findings are available in the NCHS Data Brief and Frequently Asked Questions.

Significance
The new data detail the experiences of young children with ASD, describing when they are first identified as having ASD, who is making those identifications, and the services and medications the children use to meet their developmental needs.

What’s Next
NIMH encourages researchers to access and analyze the new dataset to produce more studies on the early life experiences and the diagnostic, service, and treatment issues relevant to children with ASD and special health care needs. The Pathways to Diagnosis and Services Study dataset can be accessed at http://www.cdc.gov/nchs/slaits/spds.htm.

Reference
Pringle BA, Colpe LJ, Blumberg SJ, Avila RM, Kogan MD. Diagnostic History and Treatment of School-Aged Children with Autism Spectrum Disorder and Special Health Care Needs. NCHS data brief, no 97. Hyattsville, MD: National Center for Health Statistics. 2012.

Join ASAN Seattle in Protesting the Judge Rotenberg Center at the ABAI Convention!

24 May

The Autistic Self Advocacy Network (ASAN) is organizing a protest against the Judge Rotenberg Center.

On Sunday, May 27th, the Association for Behavior Analysis International (ABAI) is holding their annual convention in the city of Seattle, Washington. As they have many times in the past, ABAI is allowing the Judge Rotenberg Center (JRC) to exhibit at their convention this year.
The Judge Rotenberg Center’s use of contingent electric shock, food deprivation, mechanical restraint and other “aversives” have been called out as abusive on multiple occations. In 2010, their practices were  declared torture by the United Nations, which then asked the US government to intervene.  Recent civil litigation has led to renewed media attention from sources ranging from the Boston Globe to Anderson Cooper’s television shows. The United States Department of Justice has targeted the Judge Rotenberg Center in an ongoing investigation of their abusive practices. For decades, disability rights advocates have worked towards one simple goal: shut the Judge Rotenberg Center down.

Still, ABAI hasn’t gotten the message: the Judge Rotenberg Center’s use of torture in the name of treatment should never be given a platform. ABAI needs to disavow the Judge Rotenberg Center and other facilities which use abusive treatments.

The Autistic Self Advocacy Network’s Seattle chapter is mobilizing to tell ABAI that when it comes to the torture of disabled children and adults, the time has come for them to pick a side, condemn the Judge Rotenberg Center and stop giving them a platform.

When: Sunday, May 27th, 2012 at 12 NOON PDT

Where: Washington Convention & Trade Center Downtown

800 Convention Place, Seattle, WA 98101-2350

RSVP on Facebook

With pending legislation in New York and Massachusetts, we are closer now than ever before to ending the Judge Rotenberg Center’s torture of our people. Please show up to the protest and invite others to attend with you.

Places like the Judge Rotenberg Center count on the world not caring about people with disabilities to survive. They count on on society’s unwillingness to open its eyes and see Americans with disabilities as equal citizens deserving of equal rights. This Sunday, let’s prove how wrong they are. Let’s make sure our voices are heard.

Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://autisticadvocacy.org/

Autism Advocacy: Developing New Markets

23 May

Autism Speaks is hiring. You can find their job posts on the Web. Nothing surprising about that. Here is a segment from a recent job post:

Autism Speaks is the world’s largest autism science and advocacy organization, dedicated to funding global biomedical research into the causes, prevention, treatment and cure for autism. We currently have a rewarding (new) career opportunity available for an experienced Area Director – South Florida (Miami, Palm Beach, Broward) to join our growing organization.

The selected individual will be responsible for driving revenue through walks and events, strengthening existing markets and identifying and developing new markets. Must be experienced in staff management and volunteer leadership development. This position reports to the Executive Director – South Florida Chapter, which is based in Miami, FL.

Let me highlight the phrase that caught my eye: “…strengthening existing markets and identifying and developing new markets”.

Before people start talking about “big Autism” and all, that’s not really my point. More my own naivety. We’d like to think of Autism Speaks’ walk-a-thons and other fundraising as being organized by the communities. But this is a $50M a year charity. That’s just not going to happen with an all volunteer organization.

Are you happy with what the $50M/year organization does? That is another question.

Student placed in cardboard box for time out, others called mentally retarded in their yearbook

22 May

Two stories out today show

In the first (see Teacher gets lengthy suspension after student put in box) as part of a “time out” punishment. A large cardboard box was found in a classroom. When a parent asked what the box was for, she was told that the box was for time outs for another child. The parent took a picture to document the box. Good thing as shortly afterwards the box was removed.

http://swfs.bimvid.com/bimvid_player-3_2_7.swf?x-bim-callletters=WCNC

According to the story that goes along with the video:

A middle school special education teacher accused of forcing a child with special needs into a cardboard box as punishment has been suspended without pay.

In another school-related story, a high school in Texas handed out year books that cited the disabilities of the special education students attending, including referring to some as mentally retarded:

The specific disabilties of students were cited in the yearbook, with some labeled as “both blind and deaf, as well as mentally retarded,” KDFW reported.

The yearbooks were collected and new ones are being issued.

note: this was edited after publication to improve the formatting of this article on the main LBRB page.

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