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An autism parent’s gratitude to the Kennedys for speaking out

9 May

Kathleen Kennedy Townsend, Joseph P. Kennedy II, Meave Kennedy McKean: thank you. We in the disability community owe much to the Kennedy family. We don’t forget the gains in special education and other areas that the Kennedy family championed for us.

With that in mind, it’s been especially hard to watch Robert Kennedy Jr. spread vaccine misinformation. More, it’s been painful to see him use my community, the autism community, as his base and his weapon in his campaign.

I know it took courage to step forward and speak out against the misinformation your family member, Robert Kennedy Jr, has been spreading. Thank you.

For readers who are unaware, members of the Kennedy family wrote a piece published on Politico:

RFK Jr. Is Our Brother and Uncle. He’s Tragically Wrong About Vaccines.

Here’s a paragraph:

These tragic numbers are caused by the growing fear and mistrust of vaccines—amplified by internet doomsayers. Robert F. Kennedy Jr.—Joe and Kathleen’s brother and Maeve’s uncle—is part of this campaign to attack the institutions committed to reducing the tragedy of preventable infectious diseases. He has helped to spread dangerous misinformation over social media and is complicit in sowing distrust of the science behind vaccines.

To the Kennedys: I am a father. I have an autistic child. Robert Kennedy positions himself as an ally, a champion of parents like myself. Let me make this clear: Robert Kennedy does not speak for me. He does not speak for more than a few autism parents. He certainly doesn’t speak my son or other autistics. He has been part of the effort to weaponize fear of disability to frighten people about vaccines. As such, he has added to the stigma my son faces.

There is another aspect to this you may not be aware of: the anti-vaccine community is closely tied to the worst in the alternative medicine movement. Robert Kennedy regularly speaks at autism parent conventions where therapies that can only be called abusive are promoted as “cures for vaccine injury”. Mr. Kennedy could speak out against these therapies. He could stand up and make himself heard and stop this abuse. Instead, he has remained silent.

In a few weeks, Mr. Kennedy will once again be speaking at the Autism One convention in Chicago. Here are some of the therapies that have been promoted at Autism One:

Chemical Castration. Mr. Kennedy’s allies in promoting the failed idea that mercury in vaccines cause autism promoted an idea that Lupron could help remove mercury from the brain, somehow treating autism. Lupron shuts down the body’s production of sex hormones. It’s basically chemical castration. (See Disability Scoop: Chemical Castration Drug Peddled As Autism Treatment). Chemical castration of disabled youth, how can anyone not see this as abuse?

Bleach Enemas. Sounds so ridiculous that it couldn’t be true, right? But there are people, presenting at the same place as Robert Kennedy Jr, claiming that a bleach solution, either as a drink or an enema, can cure autism. Somehow this treats vaccine injury, in their logic. Disabled children are exposed to enough of this bleach (Chlorine Dioxide) that they pass the lining of their intestines. These are called “worms”. It’s abuse.

Unregulated stem cell transplants. Parents have been flying their children to foreign countries to have “stem cell” infusions. This is nothing short of medical experimentation.

Chelation. Mr. Kennedy’s main theme for years involved mercury from vaccines. When my son was first diagnosed, one couldn’t get into an online autism discussion without chelation coming up. Autistic children were misdiagnosed with “mercury poisoning” by various, frankly fraudulent, tests. These tests were used to justify chelation, without the supervision of actual toxicologists. These children were never mercury intoxicated. Animal studies have shown that chelation, applied when there is no intoxication, causes cognitive decline. Think of that, disabled children may have lost cognitive gains because people believed Robert Kennedy’s message.

The list goes on and on. “Autism as Vaccine Injury” is used to sell all sorts of fake and, sometimes, abusive therapies. And no one in the anti-vaccine community, and that includes Robert Kennedy Jr., stand up to counter this movement. Instead they accept these charlatans and frauds as allies. As long as vaccines are blamed, charlatans know they can stand up in places like Autism One and not hear criticism.

Robert Kennedy could have slowed or stopped these abuses. He could have shown courage. Instead he’s been using my community as a weapon in his attack on vaccines.

To the Kennedy family: I know this is tough to read. Believe me, if anything, I’ve downplayed the harm the “vaccines cause autism” message has caused to my community. You are the people who might be able to get Robert Kennedy Jr. to stand up and start correcting the damage he’s help inflict.

By Matt Carey

Here’s one part of Brian Hooker’s “reanalysis” that shows just how cynical the anti vaccine movement is

18 Dec

When my kid was diagnosed autistic I started reading research papers (I am a Ph.D. researcher by profession) and the raw data. One thing that struck me immediately was the fact that minority children are much less likely to get a diagnosis than white kids. And minority kids are diagnosed later.

This inequity really bothers me. Accurately identifying the needs of a disabled child can focus the appropriate therapies and supports on that child. The need to rectify this inequity is 100% accepted within the autism advocacy and research communities.

This inequity poses a problem to people who claim that autism is an “epidemic”. If we are not identifying all the autistics in any given group (we aren’t), autism prevalence numbers are inaccurate. Being inaccurate, how does one compare, say, one CDC prevalence number with one 2 years later and claim a “real” increase?

One can’t. Plain and simple.

So, for years, groups like those promoting the idea that autism is caused by vaccines have not only ignored this inequity, they have actively denied it. They are stuck between accepting that the data can’t show an epidemic, or accepting that minorities have some sort of protection from this supposed “autism as vaccine injury”.

When was the last time you read something from, say, the Age of Autism blog or Andrew Wakefield calling for efforts to end this inequity? You haven’t. They don’t do it. When have you heard from someone like Brian Hooker that we should study minority populations to see what “protects” them from “vaccine injury”? You haven’t.

Who is Brian Hooker? Brian Hooker is a parent of an autistic child. Brian Hooker strongly believes that vaccines cause autism. He can back this up with his observations of his child’s development. Observations which are contradicted by his child’s medical records. I discussed this before as Double checking Brian Hooker’s story in VAXXED. A Special Master (a judge in the vaccine court) put it very strongly:

After studying the extensive evidence in this case, I am convinced that the opinions provided by Petitioners’ experts in this case, advising the Hooker family that there is a causal connection between SRH’s vaccinations and either the initial causation or aggravation of SRH’s ASD, were quite wrong.

In the original, the Special Master emphasized “quite wrong“.

So, we have someone who believes vaccines cause autism to the point of ignoring the facts in front of him.

A few years ago Mr. Hooker “reanalyzed” some data from an old CDC study, suggesting that evidence showed that the MMR vaccine might increase risk in African American boys. That was discussed in great detail here and elsewhere. (for example: Brian Hooker proves Andrew Wakefield wrong about vaccines and autism and MMR, the CDC and Brian Hooker: A Guide for Parents and the Media).

Mr. Hooker’s study was retracted. In the research world thats a big deal. As in, embarrassingly bad.

Recently, as in 4 years after his original study, Mr. Hooker republished his “reanalysis”. In the Journal of American Physicians and Surgeons. I’d be completely embarrassed to have a paper in that journal, to be blunt. A lengthy discussion of this reappearance of the study can be found at Respectful Insolence as Brian Hooker’s antivaccine pseudoscience has risen from the dead to threaten children again.

Let me just focus on how Mr. Hooker, in my view cynically, abuses the African American community in order to attack vaccines. From the website of an organization Mr. Hooker belongs to (the ironically–to be polite–named “Children’s Health Defense”), we read this:

Main Points from Reanalysis:

The rate of autism diagnoses has increased alarmingly in the U.S., and is about 25 percent higher in black children. Boys are far more likely than girls to receive this diagnosis.

This is not only wrong, it’s wrong in a way that points to incredible dishonesty.

This first point is that autism is about 25% higher in black children. A “main point from the reanalysis”.

Tell me, when you read that did you think, “this study found that autism is more prevalent in African American children”? If so, you were misled. The 25% higher prevalence is from a different study than Hookers. And that other study says something completely different.

From the Hooker study:

However, one study showed that prevalence of autism in African-Americans was approximately 25% higher than that of whites when the data were adjusted for socioeconomic factors[7].

Reference [7] is Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study.

The Socioeconomic Equality study states:

Also notable is that, although the overall ASD prevalence was higher among non-Hispanic White and Asian children than among non-Hispanic Black or African-America and Hispanic children, when the results were stratified by SES, we saw that the racial/ethnic differences in prevalence varied by SES (Table 3). The lower prevalence among non-Hispanic Black or African-American and Hispanic children was seen only in the low SES category, and the fact that more non-Hispanic Black or African-American and Hispanic children live in poverty contributed to the lower overall prevalence among these groups.

Emphasis mine. Overall ASD prevalence was lower for African American children. Not 25% higher. This lower prevalence was due to lower socioeconomic status. I.e. poverty.

Want to see this a different way? Here’s a figure from the paper (click to enlarge):

The overall prevalence in White non-Hispanic kids was 6.9/1000. For black non-Hispanic kids it was 5.7/1000. About 20% lower. Not 25% higher as Mr. Hooker claims.

Fewer African American kids are getting autism services. Not because they aren’t autistic, but because their poverty keeps them from getting a diagnosis.

This is something we should be working towards fixing. No question. But don’t look to the anti-vaccine community to care or act. It’s an inconvenient fact for their epidemic story.

I guess he has such a low level of respect for the people in his own community (those who believe vaccines cause autism), that he thought no one would check this.

By the way, this paper isn’t the only one that shows a lower autism prevalence among African Americans. You know those CDC autism prevalence reports that come out every two years? Every single one has reported a lower prevalence among African Americans. Every one.

Here’s a line from the latest report:

Previous reports from the ADDM Network estimated ASD prevalence among white children to exceed that among black children by approximately 30% in 2002, 2006, and 2010, and by approximately 20% in 2008 and 2012.

When I saw the claim on Hooker’s organization’s website I figured he must have cherry picked a study that shows what he needed to make his story work. It’s just such common knowledge in the autism community that African Americans get diagnosed less frequently. It’s in every CDC report. I didn’t know he wasn’t cherry picking, he was just misrepresenting the study entirely.

I discuss this as a scientist. He “misrepresented the study”. My father had a word for that sort of behavior: lying.

OK, Brian. You’ve read the studies and decided to do nothing about the fact that many autistic African American kids aren’t getting identified and getting appropriate services. I get that, you have your own cause. But, really, is that community so much of a nothing to you that you can just use them like this? I ask rhetorically. You and your community have always acted with callous disregard.

I once had hope that as it because completely obvious that you and your community were wrong (and that was many years ago), you’d join the actual autism community and put your advocacy to use. I now know that will never happen. And, frankly, we don’t need dishonest people.

By Matt Carey

Why are Robert Kennedy Jr. and Wakefield’s Vaxxed team allying with someone who spreads holocaust denialism?

31 Mar

Simple answer: because she’s anti vaccine.

But I’m sure readers would like a bit more detail than that. Today Robert Kennedy Jr. spoke at an event for vaccine antagonistic activists. On the list of speakers: Sherrie Saunders. Ms. Saunders has been part of Andrew Wakefield’s “Vaxxed” team for some time.

Here are some posts from Ms. Saunders’ facebook feed. She’s “educating” her readers with writings from a “fb historian”. I will post screenshots for the most part as this is disgusting material.

Here’s one post. And a screenshot of the start of the post:

That post includes a paragraph from the “Protocols of Zion”. Here’s the start of the Wikipedia page on the Protocols of Zion:

The Protocols of the Elders of Zion (Russian: Протоколы сионских мудрецов) or The Protocols of the Meetings of the Learned Elders of Zion is an antisemitic fabricated text purporting to describe a Jewish plan for global domination. The forgery was first published in Russia in 1903, translated into multiple languages, and disseminated internationally in the early part of the 20th century. According to the claims made by some of its publishers, the Protocols are the minutes of a late 19th-century meeting where Jewish leaders discussed their goal of global Jewish hegemony by subverting the morals of Gentiles, and by controlling the press and the world’s economies.

Again, the so-called “Protocols” are a racist fraud.

That same post includes a picture of Hitler with text entitled “Hitler knew who the real jews were”. I will not copy it to this site.

Here is a screenshot of another of her posts from that day (link). Again, “via Fb historian”. It’s more of the same. One of the pictures with that post is again of Hitler, with the caption: “They told you we were the monsters. We were the last warriors who fought the satanic jewish banking cartel that rules you today.”

Another of Ms. Saunders’ pages from that day is entitled by her “AGENDA OF THE ZIONIST MOVEMENT” (link).

So, Robert Kennedy, why are you associating with this person?

So, Andrew Wakefield, why are you associating with this person?

So, Polly Tommey, why are you associating with this person?

So, Brian Hooker, why are you associating with this person?

So, Barbara Loe Fisher, why are you associating with this person?

Surely if the information she has is valid, you can find someone to present it who doesn’t share such offensive lies as these.

By Matt Carey

Mr. Kennedy, if you know the science, why did you claim that the MMR vaccine contains mercury?

16 Nov

Robert Kennedy (son of Robert F. Kennedy) has been focused on reducing mercury exposure for some time. His advocacy against mercury led him to focus on vaccines (infant vaccines used to contain a mercury compound as a preservative). And, the main argument against mercury in vaccines is the (now totally failed) idea that mercury in vaccines causes autism.

It’s important to keep that autism is not his priority. It’s his tool to allege dangers of vaccines. He’s not out to help us out, but instead to use us to help him.

Add to this that he’s a lawyer, not a scientist and he’s from a very political family. Three are lawyers and politicians actually understand science. Mr Kennedy claims he is in that number (he’s “rabidly pro-science”), but in reality he either doesn’t understand the science or the facts are just be a political tool for him.

That Mr. Kennedy feels the need to instill in us the message that he understands science may stem from the fact that his first attempt at discussing autism and vaccines met with disaster. He published an article “deadly immunity” (because, you know, very pro-vaccine people use terms like “deadly immunity” to discuss vaccines, right?). This article was published both in Rolling Stone and In Salon’s Correcting our record, We’ve removed an explosive 2005 report by Robert F. Kennedy Jr. about autism and vaccines. Here’s why we read:

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged here) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

“…critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link”. Not exactly a ringing endorsement of Mr. Kennedy’s approach nor the “science” he still promotes.

One take a moment here to discuss Mr. Kennedy’s strong record of advocating for real changes that would benefit autistics. Or we could if there were such a record. Again, we aren’t his focus. We are his tool.

So, given this long introduction, what about the claim that that the MMR vaccine contains mercury? It is in this video Mr. Kennedy produced recently. And while it may seem like a small thing, it is a clear example of misunderstanding or ignoring simple facts in order to support his argument that mercury in vaccines cause autism. Mr. Kennedy is jumping on the controversy that Brian Hooker and Andrew Wakefield tried to make last year about the MMR vaccine.

Now for those who have a basic understanding of the science, one will immediately wonder, “why is Kennedy latching on to this MMR story when there is no mercury in the MMR vaccine?” Not only does the MMR vaccine not contain mercury, it can’t contain mercury. The MMR vaccine is a live virus vaccine. Mercury is a preservative; it’s specific purpose is to kill bacteria (mostly) and viruses.

Let’s leave out the other huge warning flags here–such as the current MMR controversy Wakefield and Hooker tried to create is based on a huge amount of misrepresentations. Let’s ignore that and ask, surely Mr. Kennedy wouldn’t claim that the MMR vaccine contains mercury, right? Because that would mean either he doesn’t care about the facts or doesn’t understand the facts. It would suggest that sticking to very simple facts is taking back seat to political advocacy.

Why care, one might ask? Politicians have been ignoring facts for millennia. I care beause of the harm Mr. Kennedy brings to my community. I care because he is be scaring parents, especially African American parents, needlessly and convincing them to avoid a vaccine which prevents three very serious diseases. But more, he’s instilling in a new community the guilt and shame that comes with belief in the vaccines-cause-autism idea.

Given that long intro, here’s the video where Mr. Kennedy sends out his message to the African American community:

You can jump right to the point I’m discussing (6:45 into the video).

“…it proved that these vaccines, these mercury containing vaccines particularly, were causing autism”

When he’s talking about the William Thompson story, he’s talking about this study, Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan atlanta. He’s talking about the MMR vaccine.

Again, the MMR doesn’t contain mercury. Never has. In fact, it can’t. And there’s no good reason why after all these years why Mr. Kennedy would not know this. In his book “Thimerosal, let the science speak”, Mr. Kennedy on two occasions (Kennedy MMR-not thimerosal 1 and Kennedy MMR-not thimerosal 1) notes that the MMR vaccine does not contain mercury.

Again, this may seem like a small thing–he got this fact wrong. So what?

There was a time when I thought that the leaders of the movements that promote the idea that vaccines cause autism were just misguided. Probably good, decent people who somehow got themselves to believe wrong ideas. It’s not that hard to believe in something false, and just because you are wrong doesn’t mean you are lying.

Well, in my opinion, that doesn’t describe Mr. Kennedy. And as I’ve noted, the consequences for my community are huge. And I don’t appreciate Mr. Kennedy what appears to be Mr. Kennedy using us as his tool.

By Matt Carey