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Time Magazine picks up “I am Autism” protests

7 Nov

Time magazine has an article online today, ‘I Am Autism’: An Advocacy Video Sparks Protest. The article notes the protests staged in response to the I Am Autism video. (I have made my own position clear on the video Autism Speaks media campaign…I am autism, Why I don’t like “I am Autism”, I am autism video removed from Autism Speaks’ website…or is it?, The Autism Speaks bait and switch with I am Autism, and ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices.)

Time starts out with the controversies in the autism communities:

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

Time has comments from the Autistic Self Advocacy Network’s Ari Ne’eman.

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Also, they quote Peter Bell of Autism Speaks:

“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.

I would welcome (to put it mildly) Autism Speaks getting some autistic representation in their organization. I think “advisory committees” sounds a bit weaker than the sort of representation I’d want to see, but it is a start.

As an aside, can someone explain this part of the article to me?

He notes that other disability groups have moved away from using fear and pity in their media campaigns. (See the best and worst Super Bowl commercials of 2009.)

OK…I’ll grant you that Super Bowl Commercials are not big on Pity and Fear, but it just doesn’t seem to fit the story.

Time has linked to protest videos “I am socks” and “I am Autism Speaks

Environment of Harmful Ideas

27 Oct

There used to be an email group on Yahoo devoted to the ideas in David Kirby’s book, Evidence of Harm? It was called Evidence of Harm or EOH for short. The book was ostensibly an exercise in investigative journalism.

  • Had there been a dramatic increase in autism amongst children born in the 1990s?
  • Was this increase caused by the increasing burden of mercury resulting from more thimerosal containing vaccines being added to the vaccine schedule at the beginning of the decade?
  • Was the government involved in a cover up?

Supporters of the vaccine-autism hypothesis saw the book as vindicating their beliefs. Hence the EOH group. But Kirby had always been clear about one thing. If mercury was a significant cause of autism then its removal from childhood vaccines should cause the numbers of new cases to fall. When the mercury was removed and numbers continued to rise Kirby wriggled a bit and then invoked environmental toxins as the reason. As a result the yahoo group Evidence of Harm changed its name to Environment of Harm. So now it was environmental mercury and not the mercury in vaccines. Well not any more. All versions of the Vaccine OS are a bit like Microsoft Windows . They have to be backward compatible with previous versions and are consequently laden with bloatware and very unstable. If you read the group today there are very few autism specific posts and lots of general anti-vaccine comments. This has slowed down the usual messages of sympathy for the perpetrator. But one member of EOH still managed this comment

But yesterday someone posted a link to yet another story of an autistic teen allegedly murdered by his mother. It is too early to speculate on the outcome and at least one newspaper has closed its online comment section on legal grounds until the trial is over. This has slowed down the usual messages of sympathy for the perpetrator. But one member of EOH still managed this comment. [edit]

To the group sadly I beleive we will see a rash of cases where , where they put there child to sleep. The same phenomena occured in england over a two year period , that force the UK gouv to increase funding Before they wake up , I suspect we will see many cases

Pierre

So murder is now “putting to sleep.” And heck it works! When parents went on a killing spree in the UK the government increased its spending on autism. I live in the UK I remember a few isolated cases of murder of autistics, no more, but sadly no less than what is happening in the rest of the world. I do not remember it leading to a growth in funding. What we have in the UK is a National Autistic Society that is committed to improving the lives of autistic people and their families. It operates across the lifespan. It does not demonize autism or cry wolf over vaccines and epidemics. Its campaigns section has enabled autistic people to talk directly to lawmakers and the law is changing. More services are on the way. But at no point were the deaths of autistic children exploited for campaign purposes. EOH is well named. If it can foster the sort of twisted thinking and disregard for the facts displayed by Pierre it truly is an environment of harm.

Autism Minnesota Somali community see through anti-vaccine brigade

29 May

In November last year, David Kirby wrote a Huffington Post entry about the Minnesota Somali autism situation saying:

In fact, one of the most obvious “environmental” differences between Minnesota and Somalia is mass vaccination…

And of course, the Age of Autism site, made many proclamations about the Somali community and vaccines:

Somali parents, I offer this advice as the father of a son with autism. Like many of you, I watched my normal son descend into autism after receiving his vaccines. I genuinely believe too many vaccines given too soon in our children’s lives is the primary trigger for the autism epidemic

However it seems that maybe the Minnesotan Somali autism population have done their own reading and come to their own conclusions.

The Somali American Autism Foundation is a new-ish Foundation. The domain name was created in Feb 2009 for example. Pretty much in the middle of the period that the Age of Autism crew were waxing lyrical about standing shoulder to shoulder with their Somalian friends in the battle against vaccines.

One of the founders of the SAAF, Idil Abdull, has this to say:

When my son Abdullahi was first diagnosed with autism at age three, I felt angry, sad and confused because I have never heard of the word Autism before. I had no idea what to do next and how to help my son. A mother’s job is to help her child with whatever life throws at them, but when the doctor told me there is no known cause and cure for autism, I felt helpless and hopeless.

I remember crying for what seemed forever. After I realized to be thankful that god blessed me with a beautiful son, I saw the hope in him and the help he needed from his mother. I rolled up my sleeves and went to work by reading every autism book I could find and going online for any help to give my son the hope he and countless others need and deserve. I would not change a thing about my son Abdullahi. He is a happy and loving child and I thank god everyday for him. There is HELP and There is HOPE not just for my son but for all of our children.

Now thats a pretty fantastic, positive and…yep, neurodiverse, type of message don’t you think?

But there’s more.

The SAAF website carries a detailed explanation of what a vaccine is and how they were first started. It takes away a lot of the negative mystery and states:

There is a strong minority of people who believe that the increasing rates of autism and learning disabilities in the U.S. are related to its mandatory immunization program. There is still no credible evidence of a correlation between autism and vaccinations. This position is supported by the World Health Organization, the CDC, The AMA, and the American Academy of Pediatrics.

They then recommend that a parent talk to their physician. What simple, credible and good advice.

I’d like to welcome The SAAF to the growing community of autism organisations that are clearly fed up with a constant preoccupation with a disproven hypothesis. Maybe it would be a good idea for SAAF and the newly created Autism Science Foundation to talk together.

Autism Progresses in Parliament

28 May

A few weeks ago I attended the Northern Regional Forum of the National Autistic Society. The general feeling was that all those working around the private member’s bill on Autism then before Parliament had done a fantastic job. The government was talking to us and, more importantly, listening to us. The Bill of course would never become law but we could expect signficant concessions from the government in exchange for the Bill being dropped.

Instead the government proposed to delete the existing clauses in th eBill and replace them with amendments of its own covering

  • Transition Planning
  • Diagnosis
  • Identification and Assessment
  • Provision of Services
  • Training of Professionals
  • Local Authority/PCT Leadership

These amendments were acceptable to the Bill’s supporters and it will now progress through Parliament with government support. It is thus more closely focused on adult proivision. Provisions relating to children, including diagnosis, data collection and planning services will be enacted via regulations and guidance issued by the government a part of its Children and Young People’s Plan.

There is still a lot of work to be done. The government consultation that I wrote about last month is continuing and it is even more important now for people to respond.

Meanwhile, another private member’s bill from John Bercow on special educational needs that only came 19th out of 20 in a poll of MPs has failed to become law but the government has given assurances that it is making progress on meeting the commitments outlined in the Bill. The NAs was again involved in drafting the Bill and lobbying for its support.

the National Autism Society, which had worked with Bercow on the Bill, said it was satisfied that the Bill had achieved some success.

NAS policy manager Beth Reid said: “This Bill has helped to raise the profile of many important issues facing SEN children. It has put increased focus on making sure the right measures are in place to ensure they are support properly.”

However, Reid said more work was needed to bring down the high number of SEN children [whch contains a disproportionate number of autistic children] excluded from school, something Bercow’s Bill had sought to address.

This is important work. These are not grandiose schemes for combating autism, defeating autism or ramping up research efforts into possible causes and cures. But they are honest attempts to improve the lives of autistic children and adults. The NAS and its allies will continue to monitor the government response to ensure that its deeds do in fact match up to the commitments it has made in response to our campaigning.

Jenny McCarthy Blocked Me on Twitter!

26 May

A fascinating Guest Blog piece here from Dawn Crawford, Communications Manager for the Colorado Children’s Immunization Coalition on their Twitter activities.

How One Small Nonprofit Irked a MTV Star

It’s amazing how one simple action can result in a landside of meaning.

On May 14, I realized that the organization that I work for, the Colorado Children’s Immunization Coalition (CCIC), aka ImmunizeCOKids on Twitter, was blocked by Jenny McCarthy, aka JennyfromMTV on Twitter.

Okay, so that’s a little odd. That is the only user I know that blocks CCIC.

Sure, CCIC has put out some tweets about Jenny. She has made herself a major target for the pro-vaccine movement. What is really odd is that the block was in response to only three tweets with her user name in it. In the name of complete transparency, I’ve included the actual tweets:

ImmunizeCOKids: @shuwu – great work – “Open Letter 2 @Oprah” poetic, smart & dead-on post about deal w/ anti-vax @JennyfromMTV http://ow.ly/6uY7 (May 14, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1796433253 )

ImmunizeCOKids: Poetic, smart and dead-on post about @Oprah signing deal with anti-vax @JennyfromMTV “Open Letter to Oprah” http://ow.ly/6uY7 (May 13, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1776457638 = 13 RTs of this ow.ly shortener)

ImmunizeCOKids: Jenny McCarthy is on The Doctors TV show today – very inflammatory. She is on twitter now too @JennyfromMTV (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1716401176 )

And in all fairness, here are the tweets that just included her name and not her Twitter ID:

ImmunizeCOKids: Weigh in! Future of BioPharma: Jenny McCarthy vs Autism and its effects on the public http://ow.ly/6ggj (May 11, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1765254086)

ImmunizeCOKids: Why is Oprah Winfrey promoting vaccine skeptic Jenny McCarthy? Slate Magazine http://ow.ly/5rFB – thanks @JeffStierACSH & @bobfinn (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1718911892)

ImmunizeCOKids: Agreed on the fiction of vaccines = autism part. Thanks Babble! “Jenny McCarthy To Get Her Own Talk Show?” – FameCrawler http://ow.ly/5gZ7 (May 5, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1708699412)

Social media is a very important strategy for CCIC’s mission of increasing vaccination rates to keep Colorado’s kids healthy. CCIC engages in Facebook, Twitter and YouTube to share our message of confidence in the safety of vaccines. Specifically, we use Twitter to encourage and support the majority of parents who are vaccinating their children, confront misinformation about vaccine safety and share articles from a wide array of sources.

Blocking on Twitter? What’s the Point

As someone who lives and breathes social media (I author three Twitter accounts), the blocking function on Twitter has always perplexed me. Why would you ever want to sever a line of communication in this way?

For those unfamiliar with the function, the block feature on Twitter ensures that you and the blocked user do not follow each other or direct message each other. It doesn’t prevent the blocked user from visiting the user’s profile or writing ‘@ replies’ about them. It just ensures that the user is blissfully ignorant of all the comments the blocked user is continuing to add to Twitterspace. This is from Twitter on their blocking function:

Are you sure you want to block ImmunizeCOKids? Here’s what blocking means:

You will no longer show up in the blocked person’s list of friends.

Your updates won’t show up on the blocked person’s profile page.

The blocked person will not be able to add you as a friend.

For us at CCIC, it is the rich dialogue that makes Twitter so powerful. We receive tweets at least once a week from parents telling us that we are liars and that they staunchly believe that vaccines are dangerous or that vaccines cause autism. We want to keep the dialogue open with all parents. We want to know what exactly is frightening parents and what concerns them about vaccines. It is such a great asset to be connected with concerned parents, have a respectful conversation that educates and empowers parents to make an informed decision about the health of their children.

Moreover, a ‘brand’ like Jenny McCarthy blocking CCIC on Twitter has interesting social media branding implications. It encourages us to assume that she isn’t open to any opposing views. It tells us that contrary to what she says in the media, she doesn’t want a dialogue about this issue. She wants a platform.

David and Goliath

So why are we so excited about being blocked by Jenny? It’s that she cared enough to take the time to block CCIC. It’s that she cared enough about what we are saying to end the conversation.

It’s a lot like David and Goliath. Jenny is a super-human symbol of the anti-vaccine movement (Jenny states that she is ‘anti-toxin’ and not against vaccines- aren’t we splitting hairs?). CCIC is a small but vocal organization in Colorado making sure physicians, nurses and public health providers get the vaccines, resources, and continuing education they need to keep kids healthy. Our total budget amounts to about 1,400 copies of Jenny’s latest book (which not a dime of that budget comes from pharmaceutical companies, btw). CCIC is insignificant in Jenny’s world but important enough to heed a reaction.

Can this open a dialogue?

A good vaccine advocate friend pointed out that this might be an opportunity to have the sides of the great vaccine divide sit down and have an open, real conversation. We think this is an opportunity to come together on the one issue that we can agree on which is protecting the health of children.

So in the end, this is an honest, open invitation to Jenny McCarthy to have a conversation. We both want to do what is right for children; we just have different paths to the same goal. Let’s find a common ground of respect and move forward in protecting children.

Until then, we’ll be here in Colorado protecting children from disease just like we do everyday. Jenny, we hope to hear from you soon. You know where to find us on Twitter.

About the Author: As the Communications Manager for CCIC, Dawn Crawford leads all messaging for the Colorado Children’s Immunization Coalition (CCIC). CCIC is a state-wide nonprofit that ensures that physicians, nurses and public health departments get the vaccines they need to keep Colorado’s kids healthy. CCIC is very active on the ‘interwebs’ as an advocacy organization promoting the prevention of vaccine preventable diseases. You can find them on Facebook, Twitter and YouTube.

Strategic Plan: fact and fiction

2 Feb

If you’ve been reading some of the autism blogs lately, you’d think that the only question that the NIH has to consider on autism is whether to study vaccines. That’s because, it’s all the autism organizations seem to be talking about with respect to the IACC and the NIH.

Yes, I’ll admit I’ve contributed to the pervasiveness of the vaccine discussion by responding to those blogs. Just to get that out.

The big stink lately is the fact that the vaccine-specific initiatives were voted out of the IACC’s Strategic Plan in January. Autism Speaks and the small groups like Generation Rescue, NAA, TACA and SafeMinds (as an aside—why are there so many clone orgs? Do they really represent different views?) all issued statements or harsh words about this change.

The story being propagated is basically this: “All the money is going into genetic research. We asked for this small thing and they blocked it”

So, let’s do something different than the vaccine-orgs, eh? Let’s look at some of the initiatives that are still in the Plan. Let’s discuss what is really happening on that front. There is a lot more to discuss about the reality of the Plan, but I figure since no one wants to actually look at the initiatives, it’s fertile ground.

The Plan is divided into section (think chapters) according to “questions”. Let’s look at a few sections and pick a few initiatives out to consider.

Question 1: When should I be concerned?

Identify a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. Estimated cost: $30,000,000 over 5 years.

Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015. Estimated cost: $40,000,000 over 5 years.

Holy Moly! I’d expect end-zone victory dances over something like that–$30M for biomarkers? Another $40M that includes biological heterogeneity? Isn’t this exactly what these organizations claim they want—recognition and research into the biological underpinnings of autism?

Instead of victory dances, we get silence from the vaccine-orgs on these initiatives. It’s all “what happened to vaccines!”

Here’s one that I wouldn’t expect them to trumpet, but my eye was captured by this:

Validate and improve the sensitivity and specificity of new or existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012. Estimated cost: $5,000,000 over 3 years.

My eye was captured, but that’s because I am really into the idea of identifying underserved populations like adults, and racial and ethnic minorities. I don’t expect the vaccine-orgs to support this since admitting there are underserved populations threatens the “epidemic”, so I didn’t expect the vaccine-oriented organizations to comment on that.

OK, let’s move on to the next “question”:

Question 2: How can I understand what is happening?

Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. Estimated cost: $6,000,000 over 4 years.

Whoa! Did I read that correctly? $6M for studies on immune system interactions in the development of ASD? And, from the vaccine-orgs that called for this research? The sound of one hand clapping?

OK, the really big study for this section is this one:

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, with a special emphasis on females, youths, and adults with ASD change over time as compared to typically developing individuals by 2020. Estimated cost: $50,000,000 – $100,000,000 over 12 years.

Again, they are tracking the “biological” side of autism. Not a word of welcome from the vaccine-orgs.

The study above is one of the most critical that the Plan can call for, in my most humble opinion. How many times have we all asked or read others ask, “how will things look into the future?” Wouldn’t that really help answer questions about who “recovers”? Won’t Seriously, wouldn’t it be nice to understand how many people show large gains? Although lets face it, it happens even without “biomed”.

And, yes, I am very glad to see the extra emphasis on adults and females as well, by the way.

Question 3: What caused this to happen and how can it be prevented

This is the section where the vaccine initiatives were shoehorned in. Let’s take a look at what is still in.

Check out this big one:

Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. Estimated cost: $40,000,000 over 5 years.

Wow! $40M in gene/environment interactions. How much closer to the supposed agenda of the vaccine-orgs can one get? And yet, once again, the vaccine-orgs aren’t talking about it.

How about two more initiatives:

Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. Estimated cost: $10,000,000 over 5 years.

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. Estimated cost: $10,000,000 over 5 years.

Another $20M on environmental issues.

I think the point is made—just in this list there are something like $100M to $200M in funding for the biology of autism and environmental factors.

Why don’t the vaccine-orgs talk about these initiatives? One could speculate that it hurts their political maneuvering complaining about the removal of the vaccine initiatives. “Senator, they gave us $100M for exactly what we asked for, but we didn’t get everything”. Doesn’t sound so good, does it?

But, and this is important, these same vaccine orgs weren’t trumpeting the inclusion of all these biology and environment initiatives even before the vaccine initiatives were removed.

That’s why I keep referring to them as “vaccine-orgs”. It seems vaccines are the one and only issue they care about. Sure, they gave some lip-service to environment and biology. But now it’s as if these initiatives don’t exist and aren’t important. If you listen to their spiel: “Poor us, we asked for this small vaccine initiative, but all we got was genetics”.

Genetics? Yep, it is in the Plan. And rightly so, I will add. There is real evidence for genetic links to autism. If we are to understand autism, even environmental causes, we need to have the genetic information. Take this initiative, for example:

Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.

That’s a big project, and that’s what the vaccine-orgs would like everyone to think is the core of the Strategic Plan. But, as we’ve seen, it just isn’t fair to paint the Plan as emphasizing genetics while ignoring environment and biology.

There is a big push right now to stall the Strategic Plan (as though it hasn’t been delayed enough already by the constant attempts to rewrite the Plan by Lyn Redwood. If you think I am the only one who thinks this, listen to the last IACC meeting.) Yes, the same organizations who called for research into the environment and gene-environment interactions are willing to stall that research for one reason: vaccines.

Who thinks that TACA or Generation Rescue or any of the other small orgs would sit quietly by and see all this research stalled if it weren’t for the possibility of getting vaccines into the Plan?

Why should the rest of us sit quietly and let them stall progress towards a Strategic Plan that includes good research projects on topics like lifespan issues?

We shouldn’t.

Statement on autism, vaccines and mitochondrial disease

22 Mar

The following was posted on the blog of the Mitochondrial Disease Action Committee yesterday.

The recent headlines concerning the potential links between autism, mitochondrial diseases, and vaccinations are evidence of the need for better understanding about mitochondrial disease. It is conservatively estimated that one in 4000 individuals are affected by mitochondrial disease, although specialists agree that the disease is under-recognized in the general population. The presentations and severity of symptoms of mitochondrial disorders clinically vary and affect both adults and children.

Vaccinations are critical in protecting the health of our children. All children, even those with suspected or known mitochondrial diseases, should receive the recommended vaccinations. The risks of these communicable illnesses outweigh the risk of vaccine-related reactions. Any causal relationship of thimerisol to incidence of autism has been disproven by observing the incidence of autism before and after eliminating this form of mercury from the vaccines. MitoAction encourages parents to talk to their pediatrician about these concerns.

David Holtzman, MD, PhD, a Pediatric Neurologist at Massachusetts General Hospital in Boston, MA, notes, “Mitochondrial Disease may present with the clinical features of Autism Spectrum Disorders (ASD). Several recent studies have documented biochemical evidence of abnormal mitochondrial functions in at least 30% of children with ASD.”

Awareness and attention to mitochondrial disorders will bring greater understanding of the impact of environmental and physiologic stressors on both autism and mitochondrial disease. Further research may explain how autism can be an expression of mitochondrial diseases and could be prevented.

Mark Blaxill Thinks Bloggers Are Mean

4 Feb

Mark Blaxill, the token man of the mercury moms at SafeMinds, has written a lip-trembling post over on Age of Autism about how mean bloggers can be. Lets have a bit of fun with it shall we?

The rapid evolution of the Internet has created a host of fascinating, exhilarating and occasionally despicable new things. The Age of Autism is a blog and we’re proud to be a part of a new phenomenon called the blogosphere……But as one might expect with any new form of cultural expression, there’s a bizarre variant of the blogosphere out there. It’s a strange hybrid: it looks like a regular low end blog, based almost entirely on opinion, a dressed up version of the typical online discussion groups and chat rooms….In a disturbing way, this new hybrid has found its way into the debates and controversies around autism science…..Often connected with the so-called “neurodiversity” movement, many of these game players seem to define themselves by their own “autism”

So if I’m understanding Marky Mark, the blogosphere is a ‘new phenomenon’ upon which the light of the countenance of the Age of Autism has charitably fallen.

This ‘new phenomenon’ actually was first realised nine years ago Marky Mark. I await with bated breath Marky’s breathless announcement come 2017 that Age of Autism has discovered a ‘new phenomenon’ called Facebook. Truly the interweb is a wondrous thing. A piece of advice though Mark – never, ever type ‘Google’ into Google.

And these ‘low ends blogs’….my, my whomever could he be referring to? Surely not Autism Diva’s blog with a Google PR of 5 on the home page and over 1,150 Google backlinks to it? Or maybe Orac’s with a PR of 7 for the home page and which has over 6,100 Google backlinks to it? or maybe my own which has a PR 6 on the home page of the blog and over 2,700 Google backlinks to it.

Or maybe ‘low end’ might refer to a blog which has a PR of 3 on its home page and Google link operator can find no back link data for. I wonder, can anyone suggest a blog with user stats that low end?

Anyway, Marky Mark has a point to make and by god he’s eventually going to get around to making it dammit! Even if he has to rhetoricise our asses into verbal comas!!

But unlike people that engage in the blogosphere using their real names and identities, these avatars all have one thing in common.

They’re cowards.

Hmmmm, really? Is that why some people choose to blog anonymously?

I really hate to break this piece of news to Marky Mark but passing opinions online predates the web. Why go back to the old BBS’s and you’d find a whole bunch of people chatting away with (gasp!) fake names. In fact, I hear tell that some CB radio enthusiasts use fake names too!! The dirty cowards!

There’s a damn good reason why some people blog anonymously Marky Mark as I have good reason to know about – people who espouse similar views to you Marky Mark, target their children. People like John Best for example are very good reasons for preserving anonymity. Here’s what happens when one of his friends annoys him. What do you suppose he has in store for my child?

But who Marky Mark is really pouting about is Do’C and Interverbal, two bloggers who took the time out to look at a recent paper that Marky Mark was counting on to support his kook hypotheses. So annoyed by these two ‘low end’ bloggers (PR 5 on each of their blogs) that he elected to censor out the name of the blog they wrote at!

“Unfortunately, the main bloggers of [censored wackosphere site name] have taken the time to respond to almost all of the other blogs about this article

‘wackosphere’ (tee-hee!!) is the name Marky Mark has bestowed upon autism related blogs more popular than his it seems. That’s a lot of blogs.

So shocked was I at this blatant censorship that I nearly contacted the Ever So Important Editor on Age of Autism to ask if they would write a piece about this – after all they penned 10 blog entries last week decrying censorship – they must really hate it!

In fact so grasping does Marky Mark become that he actually says:

In fact, at a deeper level, there’s a widespread pattern of scientific intimidation and censorship underway in autism science that relies on a wide range of attack dogs…

Hey yeah – I know what you mean Marky Mark like what happened to Dr Paul Offit at the hands of the mercury militia:

….as Paul Offit, a vaccine expert who served on the committee, tried to make his way through the crowd, one of the protestors screamed at him through a megaphone: “The devil—it’s the devil!” One protester held a sign that read “TERRORIST” with a photo of Offit’s face. Just before Offit reached the door, a man dressed in a prison uniform grabbed Offit’s jacket. “It was harrowing,” Offit recalls.

….
He has since received hundreds of malicious and threatening emails, letters and phone calls accusing him of poisoning children and “selling out” to pharmaceutical companies. One phone caller listed the names of Offit’s two young children and the name of their school. One email contained a death threat—”I will hang you by your neck until you’re dead”—that Offit reported to federal investigators.

Or Paul Shattuck, also from the mercury militia:

One person said, “Don’t be surprised if you get a knock on your door in the middle of the night and I’ll be there.” Another message said it was easy in the age of the Internet to find out where people live.

Shattuck also had various utterly untrue allegations made about him by the NAA.

Or how about Arthur Allen and Professor Roy Grinker who have also been on the receiving end of threats of violence:

these people need to be horse whipped…

Or how about Ray Gallup, Director and co-founder of the Vaccine Autoimmune Project? here’s what he had to say recently:

Dear ****:

Since you seem to follow what is going on with the Leitch list let me know if Leitch, Deer and the others get hit with a fast moving truck or bus that leaves their carcasses mangled and bloodly on the street.

I will be devotely praying night and day that something like this happens to them and their followers. Especially since these creeps say such hurtful things to parents. They deserve all the best in something terrible happening to every last one of them and I will pray daily.

I usually pray for good things for families that suffer but in their case I will make a big exception.

Ray Gallup

Or what about this Marky Mark?

A-YEAR-and-a-half ago, a vaccines expert in the eastern US received a phone call at home. The man on the line did not identify himself; he simply stated the names and ages of the researcher’s two children and the schools they attended, then hung up. The threat was shocking, but not a surprise. “I get hate mail every day,” says the researcher, who asked not to be named.

Many vaccine scientists in the US have received similar threats in recent years. They are thought to come from a hard core of parents who, in the face of overwhelming evidence to the contrary, are convinced that small amounts of mercury in vaccines have made their children autistic. What’s more, they believe that researchers are complicit in the scandal.

How about what EoH member and mercury militia jackass Brian Hooker did to Dr Sarah Parker? He harasses her to the point her campus security services had to get involved and she sent this email to Hooker – which he proudly displayed online:

Date: Tue, 19 Apr 2005 14:03:17 -0600
From: Sarah Parker
Subject: Re: Sarah Parker on the show “To The Point”
To:
Cc:

I have received your phone messages (yesterday evening and today) and emails. I would like to inform you that due to your previous threat to me in November and the tone and content of these current calls and emails I consider these as threats/harassment as well and am documenting them with the campus police department. I respect your right to disagree and wish you would respect that same right with me. Please do not contact me again in the future.

Sarah Parker

How about Brad Handley of Generation rescue saying to me:

If we were on a rugby pitch, Kev, I’d put my boot in your eye and twist…

Marky Mark is quite right that there are wacko’s in the online autism community. All he has to do to find them is look to his left and right. He closes his diatribe with:

We need to defend some minimum standards for how people are permitted to participate in a public debate. At the top of the list of these standards should be this: if anyone wants to participate in a debate about autism, put your real self on the line: your real name, your actual body of work (if you have any) and your professional accomplishments and reputation. Put the things that really matter — your family’s future and your personal career prospects — out in public for everyone to see if you want to exercise the privilege of participation in civil society. If you’re willing to do that, then you have a right to be heard. If you’re not, then you should go back to your game and keep playing with yourself. Let serious people do serious work.

And he’s serious. He means it. How he:

a) Expects to set himself up as the arbiter of whats acceptable online and;
b) Expects people to be comfortable using their real names when he stands alongside the people listed above

I really can’t imagine. Believe me, if I’d known that pond scum like John Best shared a planet with me I would never have used my real identity. Its also quote clear that Mark Blaxills friends and colleagues hold no compunctions about besmirching reputations with groundless attacks and or threats of violence upon them or their children.

Look around you Marky Mark. That rarefied air you’re sucking down? Its the polluted air of the real wackosphere. A land where threats against children is fair game and where killers and paedophiles are welcomed in with no checks and open arms and the leaders of the many antivaccine kook organisations encourage and salivate after violence against anyone who disagrees with them.

Autism is a trait

6 Oct

Tyrin RencherDriving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, “Autism is a trait, not a debilitation.” Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.

Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.

There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).

He is on posters, pamphlets and television screens all around the St. Louis region as one of the many faces of the United Way fundraising campaign this season.

Most people probably recognize Tyrin Rencher as the smiling young man in a red apron standing in the kitchen at Pasta Fare in Fairview Heights beneath the slogan: “Autism is a trait, not a debilitation.”

Rencher, 27, of East St. Louis, has autism. He was diagnosed with autism at 2 1/2 years old and was enrolled in the Illinois Center for Autism in Fairview Heights when he was 3. He still receives services through the organization and was selected as a spokesman for the United Way campaign this year and as a spokesman for the Illinois Center for Autism.

The article also gives a bit of bit of Tyrin’s history and what he’s up to today (besides being a “celebrity”):

He is currently a junior at the University of Missouri St. Louis, where he is working toward a degree in business administration.

When talking to Rencher, a person quickly learns that he’s a man determined to fulfill his dreams, in spite of the autism, and he is an example of the slogan over his head on the United Way posters.

“A lot of the stuff I planned is coming true and I’m speechless that it is all happening,” he said. “I want to open up a restaurant with my degree. Something small, like (Pasta Fare.)”

He is thankful the Illinois Center of Autism was around when he was diagnosed when he was a toddler.

“Without them, I would be lost,” he said. “I really wouldn’t be in a position to go to college right now.”

He is learning to live on his own for the first time, something that he sometimes finds difficult.

“But I’m learning, it’s tough, but I’m trying to adjust to living on my own,” Rencher said. “One of the things my family has taught me is perseverance, and I do that every day.”

I love to see “good news” stories about autism, and this is one of the “goodest” I’ve seen in a while: it shows an autistic adult making his way in the world, it shows that an autistic person’s dreams and life aspirations are just like the rest of ours, and it shows an organization dedicated to helping people make their way in the world AS THEY ARE instead of trying to fundamentally change them.

Attempts at intimidation

3 Aug

I was interviewed for and quoted in the latest edition of Nature Medicine (oops caught by Ms Clark). The piece in question was an uneasy look at the continuing and escalating violent overtones emanating from the mercury militia – parents who believe against all evidence that their kids autism was caused by vaccines.

The piece started with a look at the experiences Paul Offit faces now and then:

….as Paul Offit, a vaccine expert who served on the committee, tried to make his way through the crowd, one of the protestors screamed at him through a megaphone: “The devil–it’s the devil!” One protester held a sign that read “TERRORIST” with a photo of Offit’s face. Just before Offit reached the door, a man dressed in a prison uniform grabbed Offit’s jacket. “It was harrowing,” Offit recalls.

and….

He has since received hundreds of malicious and threatening emails, letters and phone calls accusing him of poisoning children and “selling out” to pharmaceutical companies. One phone caller listed the names of Offit’s two young children and the name of their school. One email contained a death threat–“I will hang you by your neck until you’re dead”–that Offit reported to federal investigators.

Offit’s crime? He’s performed science that doesn’t support the vaccine/autism hypothesis and spoke out about it.

His experiences mirror those of scientist Paul Shattuck who also published science that didn’t support the vaccine hypothesis. After a highly inaccurate smear campaign from the National Autism Association, Shattuck also received threats:

One person said, “Don’t be surprised if you get a knock on your door in the middle of the night and I’ll be there.” Another message said it was easy in the age of the Internet to find out where people live.

Arthur Allen and Professor Roy Grinker have also been on the receiving end of threats of violence:

these people need to be horse whipped…

I’ve also been on the receiving end of various nastiness. From the cowardly actions of John Best who once compared my autistic daughter to a monkey after I related how well she was doing and his follow ups:

….My wife bought too many bananas so I’ll send some for your daughter …..

…Perhaps you can teach your daughter to swing from tree to tree…

we can see how little the mercury militia actually value children. John followed this up by joining the AWARES conference under the username ‘megan leitch’ and posting more cowardly material. John’s regulars at his blog thought this hilarious. John’s blog regulars are anonymous members of the Evidence of Harm Yahoo Group. People who say they care about autistic kids and the discrimination they face.

Recently, this blog was blessed with a series of short lived visits from Ray Gallup, the co-founder of the Vaccine Autoimmune Project. He started off with a series of sneery comments – par for the course and easily deflected. However, he then decided to start posting under the names of others, including fellow antivaxxer Alan Rees and the afore mentioned Dr Paul Offit. It was easy to spot it was him because the IP address was exactly the same.

Shortly after this I was forwarded an email from someone who had followed the Gallup idiocy (he’s banned now by the way) and had mailed him to ask what he was up to – here is the first reply:

Dear ****:

I heard through the grapevine that the Kevin Leitch crowd and his fellow swine assholes where accusing me and Alan Rees of putting things on their website/blog. These people are a bunch of scumbags and I wouldn’t waste my time with dumb fucken people.

Thanks.

Ray Gallup

Except you _did_ Ray. So why lie about it?

Anyway, that was just the starter. The main course that followed showed yet again, the full extent of the bitter hate and violent tendencies of the mercury militia:

Dear ****:

Since you seem to follow what is going on with the Leitch list let me know if Leitch, Deer and the others get hit with a fast moving truck or bus that leaves their carcasses mangled and bloodly on the street.

I will be devotely praying night and day that something like this happens to them and their followers. Especially since these creeps say such hurtful things to parents. They deserve all the best in something terrible happening to every last one of them and I will pray daily.

I usually pray for good things for families that suffer but in their case I will make a big exception.

Ray Gallup

Jim Laidler was also interviewed for the Nature piece. His words are worrying but I cannot deny their veracity:

This stuff is frighteningly violent,” Laidler says. “With the Omnibus trial looking like [the Cedillos] are going to go down in flames, I would be appalled, but not surprised, to hear that some act of violence was carried out.

Its certainly gearing up for that. It was only recently that Brad Handley of Generation Rescue said to me:

If we were on a rugby pitch, Kev, I’d put my boot in your eye and twist…

These are a set of people winding themselves up like a bunch of toddlers ready to have a major tantrum. But they aren’t toddlers. These are, amazingly, adults. I challenge them to find a single incidence of any Autism Hub blogger threatening violence towards antivaccers/autism believers.

Elsewhere
Orac.
Kristina.