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CDC-HRSA report: Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012

20 Mar

A new report came out today: Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012. I’ll come back for more detail and discussion soon, but the bottom line: the autism prevalence estimate for the US is now about 2%. 3.23% for boys.

Here is the press release for this:

CDC and HRSA issue report on changes in prevalence of parent-reported

Autism Spectrum Disorder in school-aged children

Who: CDC’s National Center for Health Statistics and the Health Resources and Services Administration

What: “Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-Aged Children: 2007 to 2011-2012.”

The report was co-authored by HRSA and data collection was conducted by the CDC. The data come from the National Survey of Children’s Health, a nationally representative phone survey of households with children. This survey is conducted every four years.

Main findings of the report:

· The prevalence of parent-reported ASD among children aged 6-17 years was 2 percent in 2011-2012 compared to 1.2 percent in 2007.

· The change in prevalence estimates was greatest for boys and for adolescents aged 14 to 17 years.

· Children who were first diagnosed in or after 2008 were more likely to have milder ASD than those diagnosed in or before 2007.

· Much of the increase in the prevalence estimates from 2007 to 2011-2012 for school-aged children was the result of diagnoses of children with previously unrecognized ASD.

The report is available at http://www.cdc.gov/nchs.

For information about HRSA’s autism efforts visit http://mchb.hrsa.gov/programs/autism/index.html.

For information about CDC’s autism efforts visit http://www.cdc.gov/ncbddd/autism/index.html.

As indicated above, there are clearly social factors at play involving identification of individuals previously unidentified. For example: If one looks at the prevalence estimate for 6-9 year olds in 2007, a value of 1.31% was obtained. In 2010-11, the prevalence for children born in the same years (now aged 10-13 years old) is 2.39%. In other words, children born in the years 1998-2001 saw an big increase in the estimated autism prevalence.

For the 2010-11 report, about 1/3 of the children were diagnosed after 2008. These are children 6-17 years old, so they were born in 2005 and before. About 30% of children born in 1998-2001 were diagnosed after 2008. These are children aged 7-13.

And, yes, this means that the thimerosal hypothesis, the notion that the increased exposure to thimerosal from vaccines in the 1990’s cause an autism-epidemic, is even less viable. There are obviously a number of social influences behind the increase in autism prevalence estimates in the U.S.. These could mask a “real” increase (or, interestingly, a real decrease). But had thimerosal been a primary driver of the increased prevalence, the prevalence would be dropping. The prevalence for children 6-9 years old, children born after the phase out of thimerosal, now is estimated at 1.82%.

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By Matt Carey

Autistic People Should…get a high five

8 Mar

During the past couple of weeks, a time when my focus has been on old and tired subjects, a small change in the online world happened. Small in the grand scheme of things, but a very good step forward. I’m speaking of the movement to change the way Google handles the phrase “autistic people should” in their auto-complete offerings.

Ever notice how as you enter terms in the search box for Google, it creates suggestions for you? Well, it turns out that sometimes those suggestions are ugly. For example, if you entered “autistic people should” you would get answers like “die” or “be exterminated”.

Autistic self advocates reacted and got Google to respond. Consider this story:

Google eliminates ‘die’ search suggestion for autism

The “auto-complete” function attempts to save time by suggesting the most common searches that match a user’s first few words. In the case of autism, three of the four suggestions could double as bumper-stickers for hate speech.

Sparrow acknowledged the search engine algorithm isn’t the problem; it is, rather, the frequency of the hostile search terms typed in by Google’s users.

They took a screenshot of what the auto-complete used to look like:

12345234-large

I’ll admit that the number 1 answer I get right now is “autistic people should killed”, but the rest are changed and we can hope that as the changes Google puts into place take effect, this will change as well.

It’s a small change, though. We live in a world where many people, apparently, enter “autistic people should be killed” into Google.

Autism Speaks took notice of the story linked above. They had a short teaser on their site, one that didn’t point out the efforts of the autistics who made it happen. And then, after some pressure, “Updated 3/6/13 to reflect the amazing efforts of the self-advocacy community”

Congratulations to those who made this change happen.

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By Matt Carey

In the News: John L. Young, a partner of Mark Geier, had his medical license suspended

6 Mar

The Baltimore Sun has an article up: USM regent said to have used controversial therapy for autism, subtitled: John L. Young, a partner of Mark Geier, had his medical license suspended.

USM in the Univiersity System of Maryland. John L. Young was a Regent of USM. And a former business partner for Mark Geier. From the article:

In the order suspending Young’s license, the Board of Physicians concluded he wrote Lupron prescriptions for nine of Geier’s patients, who ranged in age from six to 17 and who all lived outside of Maryland. The board also said in the order that Young, who sometimes used Skype to speak with patients, broke restrictions against prescribing medicine for people who live outside of the state.

Young’s actions “constitute a substantial likelihood of risk of serious harm to the public health, welfare and safety,” the board wrote in the suspension order. The board did not say Young used chelation therapy.

If I interpret this correctly, after his license was supsended, Mark Geier was using his partner to continue the Lupron perscriptions.

Geier’s theory was that autism was the result of high levels of mercury from vaccinations and that too much testosterone exacerbates the symptoms, hence the use of both Lupron and chelation therapy. Geier diagnosed the children with early-onset puberty, usually a rare diagnosis, and used Lupron to control their hormone development.

I note that the patients range in age from 6 to 17. 17’s a bit old for “precocious puberty”.

Mr. Young was to serve as a regent until 2014. He is not presently on the website for the board of regents.

It appears that the Maryland medical board is recognizing that prescribing Lupron itself as an autism treatment is worthy of censure.

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By Matt Carey

Lobbying, donations and the Congressional Autism Hearing

5 Mar

Last year the U. S. Congressional Committee on Government Oversight and Reform held a hearing on the government’s response to the rise in autism diagnoses. One of the people at the hearing, photographed with the Focus Autism team, is “Dr. Gary”. “Dr. Gary” appears to be Gary Kompothecras, a Florida chiropractor whose chain of offices reportedly doing $70M in business annually. Kompothecras is also the parent of two autistic children and strong proponent of the idea that vaccines are responsible for the rise in autism diagnoses. Both children were petitioners to the vaccine court for autism as a vaccine injury. (Both cases were denied due to failure to prosecute. This example was under appeal during the events laid out below.)

Mr. Kompothecras has already been linked to the effort to initiate the hearing, however this from a far from reliable source. If you aren’t familiar with this gentleman, feel free to peruse his website (the link is to google cache).

Taking that source as highly questionable, consider this. He claims “Dr Gary is very influential with the Republican Party and is friends with two US Congressmen – Buchanan and Posey.”

I won’t speak to “friends” or “very influential”, but I will point out that members of Congress Posey and Buchanan have received campaign donations from Mr. Kompothecras over the past few years. Here are donations from Mr. Kompothecras and Beth Kompothecras made to support Posey and Buchanan in 2008.

The unreliable source claims that Gary Kompothecras and Andrew Wakefield met with members of Congress Posey, Buchanan and Issa on May 1st. Essentially, he met with the two members with whom he had a past relationship plus the chair of the committee who was to hold the proposed hearing.

As an aside: I realize that Mr. Wakefield can spin a good yarn, good enough to take in even members of congress, who are rather too busy to check on his claims and credentials, but members of congress have health care legislative aides who should be able to offer advice on the fact that this man has been found guilty of unethical behavior and his research is, at best, fatally flawed.

That said, keep in mind that given the Kompothecras family’s support for Posey and Buchanan in the past, it isn’t surprising that they donated again in 2012. That doesn’t mean the timing is not interesting. The “Friends of Bill Posey” received donations on May 2nd (Mrs Kompothecras ) and Vern Buchanan for Congress on May 4th (Mrs. Kompothecras) and again on June 30th.

If you followed the links above, you may have noticed that the Kompothecras family also made donations to Darryl Issa, on May 14th. Congressman Issa, of course, is the chair of the committee which held the hearing. These appear to be the first donations to Mr. Issa from the Kompothecras family. Per our unreliable source, congressman Issa committed to hold hearings on May 18th, 4 days later.

Now there is nothing wrong with making political contributions. And if you look at Mr. Issa’s PAC, it is clear that he gets donations from around the country. It is also disingenuous to claim some shock that a congressional hearing involved lobbying and that donations were made in the same time frame. All three of these members of congress are honorable people. These details are, however, ones that the public has a right to know, hence the transparency laws which allowed me to find the donations.

It is worth noting that Mr. Wakefield obviously has a major personal and financial stake in seeing the vaccine discussion become publicly viable again. A factor I hope the members of congress weighed. It is also worth noting that Mr. Wakefield’s ideas on autism causation are flawed and that he was sanctioned for ethical lapses. Another factor I hope was weighed. If our unreliable source is accurate in revealing that Andrew Wakefield met with the members of Congress, I again ask, why would members of congress listen to him seriously? Frankly, if someone is lobbying congress and brings out someone with Mr. Wakefield’s history, I would be strongly disinclined to favor whatever position they brought forward.

I first heard of Mr. Kompothecras when a story came out (Crist backer Gary Kompothecras bullies Florida health officials) where Mr. Kompothecras was described as attempting to “bully” Florida’s health officials into allowing Mark and David Geier (yes, the Geiers) access to immunization records. Per the Miami New Times:

So it’s bound to turn heads when the man known to occasionally lend his private jet to the governor uses his political clout to try to bully Florida health officials into turning over scores of the state’s sealed immunization records. Especially when they’re for a father-son team, Dr. Mark and David Geier, infamous for injecting autistic children with Lupron, a drug used to chemically castrate prostate cancer patients and pedophiles.

For those unfamiliar with the Geiers, here’s the link again. It leads to the neurodiversity.com website where Kathleen Seidel’s investigations of the Geiers are laid out. Their work has been termed “uninterpretable” by the IOM and “intellectually dishonest” by the special masters of the vaccine court, to pick two out of many critiques. When they previously were given access to a different set of immunization records, they had their access cut after attempting to go beyond the approved study, including increasing the risk of breaching confidentiality.

For anyone wondering, I don’t think anything of the sort of improprieties in the Kompothecras/Crist news article are at play with the congressional hearing. I do think it is important to remind ourselves of past activities of Mr. Kompothecras to understand his approach to politics.

Having read a few “six degrees of separation” type articles online in the autism/vaccine discussion, and the reliance on one of the least reliable sources on the internet for some details, I’d be cautious about making too much out of this. But as far as details go, they are on one level rather interesting in adding to the stories which are online about how the hearings came to be. On the other hand, “wealthy person gains access to government officials and makes political donations” is rather a “dog bites man” story, isn’t it?

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By Matt Carey

Was Mark Roithmayr pushed out of Autism Speaks over vaccines?

1 Mar

Last June Autism Speaks suddenly announced that their president, Mark Roithmayr, was leaving and being replaced by Liz Feld. (Mr. Roithmayr is now Chief Development Officer at the Leukemia & Lymphoma Society) There was little information about why Mr. Roithmayr left. The suddenness and the lack of information given out for the departure of an executive pointed to there being much more going on behind the scenes. Things going on which Autism Speaks would prefer did not become public.

In reading up on the group Focus Autism, I found a past webpage of emails from the founder, Barry Segal. One of those is copied below:

Barry Segal’s email to Bob Wright June 21, 2012

Bob,

Good work on Mark. On June 1st, I sent an email to you as well as Peter Bell that stated, “I feel Mark Roithmayr is not an asset to Autism Speaks.” In three weeks he was gone. You acted faster than Warren Buffet. When I wrote him that his top three men at JM knew nothing about roofing, it took him 90 days to replace them.

Here’s the problem. The gist of it is that the government was not going to do the necessary environmental and vaccine research due to political restrictions of public money, but that did not mean that private sector organizations, like Autism Speaks, had to follow those restrictions, per Kevin Barry.

It doesn’t matter whether you have Liz Feld, Donald Trump or Alex Rodriguez on the board. Unless Bernie relents and lets Autism Speaks go after the vaccine involvement, nothing will be gained.

Barry

It appears clear to me from this email that Mr. Roithmayr was pushed out. If we take the email above at face value, Barry Segal (a large donor to Autism Speaks) wrote to Bob Wright (Founder of Autism Speaks) and Peter Bell (executive vice president for Autism Speaks), pushing for Mr. Roitmayr’s ouster. Mr. Segal has elsewhere indicated that both Bob Wright and Peter Bell want more work done on vaccines and autism.

Given the next two paragraphs of the email, it appears that Mr. Segal’s complaint about Mr. Roithmayr was, indeed, his stance on vaccines:

It doesn’t matter whether you have Liz Feld, Donald Trump or Alex Rodriguez on the board. Unless Bernie relents and lets Autism Speaks go after the vaccine involvement, nothing will be gained.

I read this to say that while pushing Mr. Roithmayr out was a step forward (in Mr. Segal’s view), that Bernie (I assume Marcus, of the Marcus Autism Center and Autism Speaks) is still in the way of the wish to push Autism Speaks further into pursuing vaccines.

Kevin Barry, on the other hand, is a former president of Generation Rescue (an organization which especially then was very vocal about vaccine causation) who went to work as a consultant for Autism Speaks in 2006. While at Autism Speaks, Mr. Barry was apparently using others to post his messages to discussion boards. In this case, a call was sent out on the “Evidence of Harm” board for people to give input to Autism Speaks on the “epimdemic ‘debate’ “:

Hi Heidi, Confidential. I am not allowed to comment on the Boards. Would you post this to the EOH board as if you can upon it yourself? It is a page where people can comment on the epidemic “debate”. It would not hurt if Autism Speaks heard more feedback from EOH parents. Thanks, Kevin

In 2009 Autism Speaks lost Eric London (founder of NAAR and member of the Autism Speaks Scientific Affairs Committee) largely due to difference over vaccines. Earlier in 2009, Autism Speaks’ executive vice president of communications and awareness, Alison Tepper Singer, resigned prior to an IACC meeting in which a vote was to take place on vaccine related research. “Knowing she might cast a vote with which Autism Speaks might disagree, she resigned from Autism Speaks prior to the meeting.” In the press release following her departure, Ms. Singer wrote:

“However, for some time I have had concerns about Autism Speaks’ policy on vaccine research. Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research.”

The same day, Autism Speaks published a press release, Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process. Yes, Autism Speaks pulled it’s support for the Strategic Plan because it didn’t include vaccines. The press release included this statement from Bob Wright:

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

It appears that even though Autism Speaks has not made such strong statements about vaccine causation in the past few years, the sentiments remain strong within the organization. Strong enough apparently to push the president out.

If it is true that Mr. Roithmayr was pushed out over vaccines, this would mean that the fears of many are validated: that Autism Speaks has a public face adhering to the science of today, while inside they still have a strong faction, including the founders and executives, pushing for a focus on vaccines. And that there is no room for someone with an opposing view.

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By Matt Carey

Is there a split in the autism-vaccine groups?

1 Mar

For people who watch the public discussion of autism and vaccines, organizations like Generation Rescue, SafeMinds, the National Autism Association and TACA (and others) come to mind. One less public organization is Focus Autism. Focus Autism is a private foundation. In other words, they don’t accept donations from people outside the foundation. Here are tax forms submitted by Focus Autism in 2010 and 2011:

2010 tax form 990
2011 tax form 990

In 2011, Focus Autism pulled in $1.7M, which makes it as big or bigger than most of the other groups named above. If you peruse their website, it is clear that they have promote the vaccine-epidemic idea. Their “about” statement is:

FOCUS AUTISM is dedicated to finding answers about autism causation, no matter how inconvenient it might be. We believe in accountability, transparency and above all, a sense of urgency.

Childhood vaccine policies must be carefully administered. We demand strict avoidance of neonatal vaccination and vaccination of vulnerable children.

We must hold leaders of government, corporations, and the medical establishment accountable for failures that have led to the autism epidemic.

Leaders in the field agree there is a subset of vulnerable children who are predisposed to vaccine-related injury. We want those children identified, so that we do not needlessly harm innocent children.

Millions of dollars have been funnelled into genetic research in a frantic search for the single gene or a small number of genes responsible for the autism epidemic. Emerging consensus rejects a purely genetic cause. Most experts now agree that the primary causes must be a combination of genetic and environmental factors.

They have funded a mix of projects and groups. In 2010, most projects were not vaccine-focused. In 2011 they funded: Autism Speaks ($51,000), the Marcus Autism Center ($50,000), projects in Africa and many other non-vaccine focused projects. In 2011, Focus Autism funded vaccine-oriented groups such as the National Vaccine Information Center ($37,500), SafeMinds ($70,000), Generation Rescue ($40,000).

In 2011, Focus Autism added to its board Louise Kuo Habakis and Katie Wright, both vocal proponents of the vaccine-causation idea. The board currently includes Brian Hooker, who is also a vocal proponent of the idea. There has been some discussion lately about Mr. Hooker’s involvement with the autism hearing held by the Committee on Government Oversight and Reform last year. The idea being presented that Mr. Hooker, lone citizen, made contact with members of congress and got the hearing moving.

Consider that Focus Autism was founded and is apparently run by Barry Segal. Mr. Segal’s family foundation has over $50M in assets, and seems to be doing a great deal of good work, especially in sub-saharan Africa. Mr. Segal’s company sold for an undisclosed amount, but had sales of $1.7B (yes B) in 2006.

Here is a picture from Facebook showing Mr. Hooker in the audience of the congressional hearing from Focus Autism’s facebook page. Sitting next to him is Mr. Segal’s wife, then Mr. Segal.

Hooker-Segal 2

I consider it possible he had a bit more support in his efforts than, say, I might have.

Focus Autism includes in its list of partners: Age of Autism, EBCALA, the National Vaccine Information Center, the Canary Party and the Dwoskin Family Foundation. All groups promoting the idea that vaccines cause autism.

As to the split mentioned in the title of this article, consider this short blog post on the Focus Autism website: The Fragmented Autism Community:

The so called autism community is represented by:

#1 Autism Speaks, which because of Bernie-Julie thing refuses to meaningfully go after environmental issues, especially vaccines.

#2 Safe Minds, another disaster and I don’t know (or care) what their agenda is.

The rest of the community is fragmented, acts like our congress, accomplishes nothing and has an approval rating similar to congress. In both cases we need to change.

“Bernie” is most likely Bernie Marcus, co-founder of Home Depot and founder of the Marcus Autism Center. I’m not sure who “Julie” refers to. SafeMinds, well that reference is clear. It is also interesting in that Focus Autism donated money to both the Marcus Autism Center and SafeMinds in 2011. Somewhere in the past couple of years, there seems to have been a falling out.

Given some of the current discussion about the way the congressional hearing was put together, specifically Mr. Hooker’s and SafeMinds’ roles (see here, here and here), it is interesting to see the organization he works with taking such a harsh stance on SafeMinds.

The name Barry Segal was familiar to me, and it took me a few days to recall where I saw it before. It was on a discussion at the Forbes website. I usually avoid bringing discussions held on other sites to this blog, but I think these statements show the possibility of further rifts, both between autism organizations and within organizations. Here are the statements made by Mr. Segal (or someone using his name, but I have no reason otherwise) at Forbes:

First this one (actually two, it was repeated):

I guess you are aware that in 1960, 3 years before the measles shot, 100 people died of measles. In 2012 over 80,000 of the babies born that year will end up on the spectrum. Bob Wright knows certain children are vulnerable to vaccines but Bernie Marcus won’t let him go there. Do you really give your child or grandchildren a Hep b shot at birth, or do you have them practice safe sex till they are 6 years old. (That is when the shot wears off)

Indicating his opinion that Bob Wright (founder of Autism Speaks) wants more vaccine research but that Bernie Marcus (Marcus Autism Center and Autism Speaks) is blocking it.

Mr. Segal went on:

I won’t discuss Hepatitis B with you except that the following five countries, Denmark, Sweden, France, Germany and Japan only give the Hepatitis B vaccination to children whose mothers test positive.

As far as Bob Wright, I have met with him and he shared with me, the following thoughts:
1.That there needs to be more vaccine research
2.That there should be no more thimerosal in any vaccines or medicines

I had dinner with Bernie Marcus in Florida. Towards dessert, I mentioned what Bob Wright had said and he told me, “There is no thimerosal in this country today,” to which I replied, “ You’ve got to be kidding me, you can go to your local drug store and get a shot of thimerosal in your flu injection.” He is clueless and after starting the Marcus Autism Center and hearing Bob Wright had an autistic grandchild, he reached out to Bob Wright to form Autism Speaks with the intent that they do not address the vaccine issue. Peter Bell and Holly Peete both have vaccine injured children and will not vaccinate their subsequent children as mandated.

And this:

I had breakfast with Peter Bell on 12/8/11. He explained to me that the increase in the vaccinations alters the immune system. When he lived in CA, he didn’t have to vaccinate his children (philosophical exemption is available in CA) but when he came to NJ, he slowed it down as much as possible. Peter suggested Tylenol could be part of the problem.

Rodney Peete said in his book, “NOT MY BOY!” co-authored by Danelle Morton:

“At home that night, R.J. had a terrible fever and started shaking violently, just short of something like a seizure. Holly called the pediatrician to ask him what could have caused this. Should we take R.J. to the hospital? The doctor was unruffled and told us it was not a reaction to the shots. He recommended that we give R.J. some Tylenol to help him with the fever and he promised that R.J. would be fine. R.J. had a terrible reaction to the Tylenol and we rushed him to the emergency room late that night. We believe he went into some kind of toxic overload shock. After that, we didn’t hear the words “Mommy” or “No” for about four years.”

As far as vaccine safety, the problem is much more than just thimerosol. Today, the autism incidence rate is 1 in 88 and this is for children born in 2000. If we apply a more conservative 8% growth rate to this rate, we’re looking at over 80,000 children born this year being on the spectrum!

In these two suggesting that Peter Bell (Autism Speaks), Holly Robinson Peete and her husband Rodney Peete (HollyRod foundation, Autism Speaks) are also proponents of the vaccine-causation idea.

All this again indicating tensions between and within autism orgs over the topic.

For anyone who thinks the vaccine-autism-epidemic idea is going away from the public discouse any time soon, keep in mind that this is not a grass roots movement. There are millions of dollars being spent by these groups every year. Much of it from wealthy donors.

Mr. Segal had some very interesting things to say about the departure from Autism Speaks of their previous president. That is discussed in Was Mark Roithmayr pushed out of Autism Speaks over vaccines?

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By Matt Carey

New York to pull students from the Judge Rotenberg Center?

27 Feb

The press release below was just forwarded to me. New York City Councilmember Vincent Gentile is calling for students from the city (roughly 1/2 of the total) at the Judge Rotenberg Center (JRC) to be pulled from the school.

The JRC is facing other pressures, including losing medicaid funding for students in their care.

GENTILE CALLS ON CHANCELLOR TO REMOVE ALL NYC CHILDREN FROM CONTROVERSIAL SCHOOL ONCE AND FOR ALLCITY HALL – In light of recent developments, Councilman Vincent J. Gentile, a long-time advocate for New York’s most vulnerable, is calling on New York City Department of Education Chancellor Dennis M. Walcott to remove all New York children from the infamous Judge Rotenberg Center in Canton, Massachusetts once and for all. The Centers for Medicare & Medicaid Services (CMS) sent a letter to the Massachusetts Executive Office of Health and Human Services saying it would no longer allow federal Medicaid money to be used by anyone who lives at a facility that employs electric shock intervention, even if that person is not receiving the treatment themselves. Massachusetts has begun notifying the families of its students that they must either move to a new facility or unenroll from state benefits immediately.

“CMS made the right decision – no federal tax dollars should be going to an institution that uses these electric shock techniques on children. It’s time New York State and New York City to do the same – no city or state money should go to support an institution which subjects its students to these cruel and unusual forms of ‘behavior modification’. The Rotenberg Center in Massachusetts where 120 NYC developmentally disabled students currently attend, is in gross violation of the most fundamental standards of humane treatment of people with disabilities”, Councilman Gentile said. “With CMS pulling its funding, we are one step closer to shutting down Rotenberg once and for all.” As a New York State Senator, Councilman Gentile introduced legislation to mandate oversight and accountability when developmentally disabled students are sent out-of-state for education and treatment. Then, in late 2009, Councilman Gentile sponsored “Billy’s Law” which requires the Department of Education to provide the City Council with bi-annual reports monitoring all out-of-state residential facilities that house New York State children for specialized educational services – both pieces of legislation passed unanimously. “It is a sad fact that our City still sends children to this Center, and sadder still that it is our tax-payer dollars that fund about half of the children at this school,” Gentile wrote in a letter to Chancellor Walcott. “I know that with your leadership, we can finally remove our children from this barbaric facility. I am asking that you immediately develop a plan, if one does not already exist, to bring these students home and that you share it with my office and the New York City Council.” New York City Education officials have paid more than $13 million last year to treat 120 city kids at Judge Rotenberg Educational Center outside Boston, which until now was the only clinic in the country that uses electric shock treatments to discipline students.

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By Matt Carey

California Special Education autism counts, ages 3-5 over the past decade

27 Feb

The California Department of Developmental Services data, once called “the gold standard” for autism epidemiology by those promoting the vaccine-autism link, shows that autism rates are higher today for kids who did not receive thimerosal containing vaccines compared to those who did. This was discussed recently in No, the autism prevalence in California did not go down after removing thimerosal from vaccines.

Here are those data:
California SpEd age 3-5

As noted previously, thimerosal was removed from vaccines nationwide, phasing out production by 2001. California passed a law prohiting the administration of vaccines with thimerosal in pregnant women and children under 3 from 2006 onwards. So, kids 3-5 in 2012 did not receive thimerosal from vaccines. And there are more kids in the Autism special ed category in 2012 than in any year previously. The trend is a relatlively smooth increase over time.

It is very clear that these data do not in any way indicate a drop in the increase in autism special ed rates with the removal of thimerosal.

Add to that, vaccine uptake in general and MMR in specific are not changing much over time.

Special Ed data and CDDS data are not the best for tracking autism, especially in such a raw form as this. But these are exactly the tools that were used for years to promote the idea that vaccines cause autism. I don’t think it is a coincidence that there aren’t webistes and discussions devoted to special education any more. I’ll await the claim that it must be the rotavirus vaccine…which contains neither thimerosal, measles virus or aluminum.

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By Matt Carey

Newspaper Poll: Should Electric Shocks Continue at the Judge Rotenberg Center

26 Feb

I just received this message from Nancy Weiss. A newspaper local to the Judge Rotenberg Center is hosting a poll on whether the electric shocks should continue.

The Canton Journal (the local newspaper from the town in which the Judge Rotenberg Center is located) is conducting a poll to determine whether people support the Massachusetts Governor’s efforts to terminate the consent decree that gives the Judge Rotenberg Center the right to use electric shock to control residents’ behavior. So far the responses have been about even. The poll is quick to take. It’s wording is a little odd:

Sen. Brian A. Joyce applauded Governor Deval Patrick’s effort to get a 1987 court order overturned allowing the Judge Rotenberg Center in Canton to continue to use aversive therapies, like electric shocks, on disabled children. Do you agree with Joyce?
If you agree that the use of electric shock for behavior control should be eliminated; please click below and vote “yes”.

http://www.wickedlocal.com/canton/x1551253715#axzz2LrVLeM8e

No, the autism “rate” in California did not go down after removing thimerosal from vaccines

26 Feb

I recently attended a talk where the speaker showed autism prevalence by age group for a large HMO in California. The administrative prevalence (fraction of people in the HMO identified autistic) was still going up as of 2010, and the speaker indicated this trend continued to 2012. California is an interesting case study because not only was thimerosal removed from vaccines along with the rest of the U.S. starting in the late 1990’s, but the state enacted a law which required that pregnant women and children under three be given thimerosal free vaccines from 2006 onward. So, with the exception of an an exemption in 2009 and another one right now, even the influenza vaccine in thimerosal free. I bring this up because it is a common argument that somehow the exposure from the flu vaccine is keeping the rate climbing, even though at most this is a lower exposure than that from the 1990’s pediatric vaccine schedule.

This all said, the talk made me dive back into looking at autism prevalence. I decided to finally write about the fact that the autism prevalence in Denmark is higher post thimerosal than while thimerosal containing vaccines were in use. This is completely unsurprising, but a myth has been propogating that it came down and that fact was being hidden.

As it turns out I also checked back with what once was the most common source of autism data for the armchair epidemiologist: the California Department of Developmental Services (CDDS). (I admit one could argue that Special Education data are the most common source for the armchair epidemiologist). The CDDS provides services to disabled Californians and keeps and makes public statistics on their client base. For a long time, every quarter they would come out with a report. For a long time, every quarter these reports would be followed by announcements about how the data showed that vaccines cause autism. One of the people you could always count on was David Kirby (author of the book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, and basically a PR man for some of the vaccine-causation groups). Mr. Kirby went so far as to claim that these data were the “gold standard of autism epidemiology”. Well, the data had their uses (such as identifying and quantifying some of the social influences behind the increase) but it is not an easy task to get results from them. The idea that they represent an accurate count of all those with ASD’s (or even accurately account for all individuals with autistic disorder) is a stretch.

But this didn’t stop David Kirby. Back in 2005, David Kirby was claiming that there was an indication that the administrative prevalence in California was starting to drop, and if the trend continued this was a sign that the removal of thimerosal was having an effect:

Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if — the implication of thimerosal in the autism epidemic will be practically undeniable.

Well, by 2007 it was clear that the California data were not really showing a drop. In addition, the lack of a drop was published in 2008 as Continuing increases in autism reported to California’s developmental services system: mercury in retrograde.\

The rise in the number of autism clients in the CDDS database was key to the idea of the mercury-induced epidemic. David Kirby (and others) relied on these data and Mr. Kirby even acknowledged that the data should start showing a drop (statement from 2005):

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

The reason is that 5 year olds in 2007 were born after the removal of thimerosal from vaccines. Their exposure to thimerosal was much less than kids in the 1990’s. If the “thimerosal caused an autism epidemic” idea were true, the rates would have to drop. They should drop back to pre-1990 (actually pre 1980) levels if thimerosal were the main, or even a main, cause of the rise.

My recollection is that Mr. Kirby did later backpedal and claim that we would have to wait until some much later date, but it was a weak argument (even by David Kirby standards).

Sorry to keep diving into past history, but one of the strangest moments in the mecury debate (and I can use the term this time, because there was a debate) came in San Diego in 2007. David Kirby debated Arthur Allen in the UCSD Price Center (about 100 yards from my old office, as it turns out). Presented with the fact that even though thimerosal exposure from vaccines had gone down, the California numbers kept going up, David Kirby presented (in something like 100 power point slides!) a four pronged response. First was a claim that California HMO’s had stockpiled thimerosal containing vaccines, so the exposure from vaccines didn’t really go down as much as reports were claiming. Then:

1) A gigantic plume of coal smoke from Chinese power plants has settled on California, depositing lots of mercury and therefore causing the autism numbers in the state to continue to grow.

2) Bad forest fires have put tons of mercury into the air, depositing lots of mercury etc…

3) Cremations (!). The burning of dead bodies with mercury amalgam in their mouths has added even more mercury to the air.

It was a hail Mary pass, to be blunt. Lot’s of handwaving and ignoring the facts.

In 2007, the CDDS changed the way they assessed and counted their clients and they stopped publishing the quarterly reports. As you can imagine, many claimed this was part of a conspiracy to hide the fact that the autism rates were declining in California. And with that the quarterly ritual of misinterpreting and deconstrucing the data came to an end.

All amusing history, sure, but one might ask, why bring all this up again? Well, because it turns out that the CDDS started putting out quarterly reports again in 2011. Yes, there’s a gap of a few years in the data. Yes, some things changed (for example, the CDDS now shows the PDD fraction of autism client base). Given these limitations–and the other limitations in the CDDS data (i.e. they are *not* the “gold standard” of autism epidemiology), what do these data show? The upward trends continue. More individuals served by the CDDS with autism, even though thimerosal was removed from vaccines. Here’s the total–all ages–count for CDDS clients in the autism category (click to enlarge):

CDDS total

Looking at the younger age groups, those whose exposure to thimerosal is much lower than for kids born in the 1990s, there is also an increase. Here is the age 3-5 age group (click to enlarge)

CDDS 3-5

and the 6-9 age group (click to enlarge):

CDDS 6-9

9 year olds in 2012 were born in 2003. Post the removal of thimerosal nationwide. 5 year olds were born in 2007, post thimerosal nationwide and post the California law prohibiting mercury in vaccines for pregnant women and small children. In both groups, the CDDS autism counts are higher than they were in 2002 (the earliest date in the currently available data). Which, in turn, was much higher than the counts from the 1990’s. Here is a figure from the Schechter-Grether paper refenced above:

S-G CDDS paper figure

Which is all a very long way of saying: years ago the evidence was against the thimerosal/epidemic idea; it is even more clear now. For years we heard Mr. Kirby and others talk about how those responsible should step up and admit what happened. Well, the fact is they did. Now it is time for those who promoted the mercury notion to step forward and show they have the guts to admit they were wrong. Because they were. Clearly wrong. It would take a lot of guts to step forward and admit the mistakes. Even though their influence has waned, it would help the autism communities. While I have focused on David Kirby in this discussion, the list is much longer of people who should step forward. I’m not going to hold my breath.

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By Matt Carey

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