no more – a letter to suzanne wright

This letter to Suzanne Wright of Autism Speaks appeared on A Diary of a Mom. Autism Speaks cannot be left to portray autistics as damaged and in need of a cure and this mom gets that. Now only if Autism Speaks will get that as they presumptuously speak for autistics without having any autistics in their organisation.

no more – a letter to suzanne wright

This entry was posted on November 12, 2013 and tagged amy sequenzia, ari ne'eman, autism, autism speaks, autism speaks to washington - a call to action, ibby grace, Suzanne Wright. Bookmark the permalink. 89 Comments

My girl cracking herself up with scripts last night

I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”
I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”
My questioner cocked his head. “Okay, so how does that read on a sign?”
I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”
I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”
He was right. I do.
Because for me, trying to reduce autism awareness / education / advocacy into a soundbite is a farce. Distilling our lives and our mission into five words or less is an exercise in absurdity. This is not the stuff of slogans on billboards – this is messy and sticky and complicated and real. This is humanity.
From No Sides From Which to Choose, June 2013

A professor at a local college recently asked me to guest lecture to her Early Education class. They were covering Autism, she’d said, and she wanted to present a variety of real-world perspectives to them. I was thrilled to have an opportunity to speak to tomorrow’s teachers.
The students had some wonderful questions, but there was one from a particular young woman in the back of the room that I will never forget.
“How did you feel,” she asked, “when your daughter was first diagnosed with Autism?”
I took a deep breath and answered honestly. “I was terrified,” I said. “I sobbed. I retched over a toilet bowl. I thought, because of everything that I thought I knew about Autism, that there was no real hope of a future for her.”
I took a deep breath before I continued.
“Because, you see, I didn’t know. I didn’t yet have someone like me to tell me that the terrifying rhetoric out there about Autism wasn’t going to be our reality.”
What I knew about Autism came from things like this … (edited to add: PLEASE take care when clicking on this video. It IS NOT for viewing around children.)

A video created by Autism Speaks whose purpose was, in the name of raising awareness, to evoke pity by showing what they called the reality of autism in every day life. It was in that video that Alison Singer now infamously said, in front of her daughter (whose name I have redacted from the quote below):

That was a very scary moment for me, when I realized I had sat in the car for about fifteen minutes and actually contemplated putting {my daughter} in the car and driving off the George Washington Bridge – that would be preferable to having to put her in one of these {autism} schools and it’s only because of {my other child} the fact that I have another child, that we didn’t do it.

That was what I knew. And therefore, I was terrified. What I didn’t yet know was that Autism is one word, but there is no one Autism.
“What I didn’t know,” I told that student, “was that our lives were going to be far different from what we’d expected, yes, but that both mine and my daughter’s would contain as much laughter as pain, as much joy as frustration, as much hope as fear. I didn’t yet know. So what I felt was despair.”
In 2009, Autism Speaks released another PSA. This one was called I Am Autism. In it, a menacing voice-over purports to BE autism. This is what it says,

I am autism. I’m visible in your children. But if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake.

By the time that video came out, my view of Autism had begun to dramatically evolve. This is what I would write the day after it aired:

Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it [...]
I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that –  but challenges and all, autism is part of who she is.

I later wrote about how I called Mark Roithmayr, then President of Autism Speaks on the day that video came out. I wrote about our conversation, in which I told him that had there been Autistic people on their Board of Directors, there was not a chance in Hell that video would have seen the light of day. And I told him why.
Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?
I explained to Mark that for every single adult on the spectrum that I knew, Autism was not something that they could separate from themselves. That it was simply part of who they are. So if Autism is responsible for all of that destruction, THEY were responsible.
You don’t mitigate saying to an Autistic person, “It’s not YOU that are a burden,” by clarifying, “it’s just your Autism that makes you a burden.”
I wish that back then I’d heard the story that I would later repeat again and again, about the young man who had been told that Autism was a “bad guy” in his head, making it hard for the “good guy” (presumably his non-existent “non-autistic” brain) to do its work. I wish I could have told him how that young man had put a gun to his head because he was going to kill the bad guy.
I wish I could have told Mark that story so that he would have understood that you can’t kill the “bad guy” when the “bad guy” is your brain. That the destruction of Autism is the destruction of human beings.
Over time, I continued to work with Autism Speaks. They are too big, I reasoned, too powerful, to walk away from. I believed that I could make an impact in their messaging. In some ways, I like to believe that I did.
I believed that I could help to save my daughter and a generation of others from growing up believing that it’s okay to say that they never should have existed, that eradication of people like them is an acceptable goal, that, in many cases, they’d be better off dead. I believed that I could make them understand the irrevocable damage that they were doing to the people whom they purported to represent.
To that end, I sat down with Liz Feld when she took over the Presidency of AS from Mark. After meeting with her, this is what I wrote:

The bottom line for me is this – Autism Speaks has done a lot of good in their short time in existence. They’ve grown at an astounding pace – one that made the pains of that growth nearly impossible to manage. Despite their efforts to evolve at the speed of light, they have stumbled in many ways, but none that Liz didn’t acknowledge and seek to learn from. I have made a choice to remain engaged and involved with them. I believe that with or without me – with or without you – they will still be the face of autism for most of the country, if not the world. Given their platform, they will be the ones who have the power to shape public perception. I’m not willing to let them do that without contributing to the conversation.
Despite huge accomplishments and contributions to our community, they have a lot to prove to many of you before you will trust them to get it right. I get that. Truly, deeply, I get that. I simply hope that you will give them – and Liz specifically – the chance to earn that trust.

 I gave them the chance to earn my trust. Every time that someone referred to one of the videos I cited above, I said, “We have to stop harping on the past. They %$#&ed up. They get it. They’re trying. We have to look at where they are now.”

.

Last night, I saw where they are now.

.

Despite so much bottom-up progress, they are, at least from the top down, still in 2006.

.

Autism Speaks is holding a conference in Washington this week. I was invited to attend. For myriad reasons, I declined. Last night, Suzanne Wright, co-founder of Autism Speaks wrote an Op-ed ahead of the forum called Autism Speaks to Washington — A Call for Action.

It begins as follows:

This week is the week America will fully wake up to the autism crisis.
If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.

I read the words and I reeled. After what had felt like so much forward movement, we were back to mothers retching over toilet bowls. We were back to “lost” children and broken, bankrupt families. We were back to fear.

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

We don’t get to use the numbers that way. We don’t get to twist people into narratives that simply aren’t theirs. To deny that Autism is a spectrum as vast and wide as the entirety of the human experience. We just don’t.
I was angry. I was hurt. I felt betrayed.
I was paralyzed.
But my autistic friends were not. They mobilized, as they do. They wrote incredible responses to the post.

Amy Sequenzia wrote:

Your words hurt me. I am an Autistic adult, yes, I have epilepsy, but this is not autism; yes I have GI problems, but this is not Autism. My family is living, happily and proud of me. I am non-speaking and I am living. I am not lost. The difference is that you cannot love autistics for who they are, so you attack us. Why did you create an organization that spread fear of and hate for autistics? Why don’t you talk to us, or better, listen to us? Your words are full of viciousness. My family sees the sun shine and they see me. They encourage me to be the best I can be and I learn every day. I cannot eat by myself, dress myself, I am not safe by myself but I have plans and I will have a future because my community has my back.
I feel sorry for your grandson. I cannot imagine my grandmother demonizing me the way you demonize him.
I hope you apologize, at least to him. He hears you, you know? The same way we do to and he will, one day, let you know how much you hurt him.
The only fear we autistics have is of people like you using this hateful power to get rid of us. Because you cannot “end” autism without ending us

Ibby Grace wrote:

When you quote the inflated numbers of us, you include a wide variety of those of us you are trying to erase. Why do you not want actual Autistics anywhere near you? Because we have read your financials and know how little money you devote to actually helping people and how highly you compensate yourselves? You use this horrible language to emotionally blackmail loving families into giving you money and time they scarcely have, to further your twisted agenda of eugenics and greed. Are there no mirrors in your house?

 I knew that I needed to write too. And so I did.

.

Dear Suzanne,

.

Three million children have not gone lost. My child is right here. This was her with her Daddy last night. She was scripting shows for nearly four hours straight. We decided to join in. We laughed together.

This is my daughter. She is not lost. She’s right here. And she can hear you. Whether or not you choose to believe that Autistic people can hear you, they can. How do I explain your words to them? To my daughter? How do I tell her what you mean when you speak of her parents and you say, “ How much can we ask them to handle? How long will it be before the exhaustion makes them ill?  How long before they break?” How do I tell her that her Mama does not see her as a burden and never, ever will? How when you are telling her the opposite?
Do you remember when you met her?

Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.
Brooke doesn’t look up. She doesn’t stop stripping her stick.
Dig. Pull. Dig. Pull.
Our visitor reaches out a hand and cups it below Brooke’s chin.
I freeze. Oh God.
She uses the hand to pull Brooke’s head up by the jaw.
A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …
She does scream, but not in the way that I expect.
“I HATE BEING TOUCHED!!” she shouts.
I am flabbergasted.
Words. Self-awareness. Communication. Self-advocacy.
I know the sentence will need to be reformatted. But I am drenched in pride.
I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.
Our visitor is undaunted.
“I just want to see that beautiful face,” she says. “Lift up for me.”
I am stymied by etiquette. By deference to our host. By generational difference. By convention.
Brooke is not.
She lifts her head as instructed. And growls.

Do you remember that the someone in that story was you? I do. I remember feeling so damned violated for my child. I remember feeling trapped by your hospitality and your age and what? Your social standing? I remember the moment of abject panic when it quite frankly took everything I had not to smack your hand away from my child’s face.

.

You grabbed an autistic child’s face to make her look at you.

.

And then something miraculous happened. My girl spoke for herself. “I HATE BEING TOUCHED!” she yelled. God, I was so proud of her. So instead of leading, I followed. I loudly praised her for telling you – with words – not to touch her. I repeated her words to make sure you’d heard them, loudly and clearly, “I’m so proud of you,” I said, “for telling Mrs. Wright that you DON’T LIKE TO BE TOUCHED.”

.

It was in the car on the way back home from your house that Katie would explain to her sister that she really does like to be touched, but not without permission by people she doesn’t know. And it was then that she would turn to me, fuming and indignant and say, “Doesn’t that lady run the biggest Autism charity in the world? I don’t get it. Does she even know anything at all about autism?”

.

“Apparently not our Autism, baby,” I said then. “I don’t get it either.”

.

Your colleagues invited me to the summit in DC. And I was torn. I wanted to be there – to talk to every politician and every DC power player who you were talking to. I wanted to follow up and tell them – she doesn’t know our Autism. She doesn’t speak for my daughter. She doesn’t speak for my Autistic friends. She sure as hell doesn’t speak for me.

.

Because they need to understand. They need to know that while it is absolutely true that there are Autistics and their families in desperate need of immediate support, and that there is indeed an urgent need for both short- and long-term plans of action for them, they are not to be feared.

.

They need to know that autism is only a death sentence if we continue to allow people like you to spew rhetoric like this from on high – rhetoric that demonizes and dehumanizes our loved ones, telling them that they are a tragedy, a burden —  a thing to be feared rather than people to be included, supported and loved.

.

I can’t do it anymore, Suzanne. I can’t stay silent while we slide back into fear. I can’t let mothers retch over toilet bowls and I can’t, I won’t, let my child believe that she is a tragedy.

So I will do exactly as I did the day at your party when you grabbed my child’s face. I’ll follow the lead of the people who should be leading. People like Amy and Ibby and Ari. People like my daughter.

.

I will stand behind them, back them up, and help to ensure that you hear their words, loudly and clearly.

.

No more.

Autistic Self-Advocacy Network

Ed note: Special thanks to Lydia at Autistic Hoya for transcribing the video above.

I called it - first measles death in the ongoing outbreak in the Dutch Bible belt

I was at university when a reactor in the Chernobyl atomic power plant burst, causing the largest radiation contamination before Fukushima. I recall that for years, milk in Europe would have the Becquerel printed on them. What I remember most about April 1986 is the face of my Physics professor, when he announced that he would not teach for the rest of the semester, since he was the main radiation safety advisor to his party. There was just quiet resignation, not a hint of triumph or satisfaction about having been right all along about the dangers of this particular type of power plant.

Without wanting to sound overly dramatic, I have an idea how he feels. Today, the Dutch Health Ministry RIVM announced the death of a 17 year old young woman from measles complications. She had not been vaccinated against measles, like most in the current (and previous) outbreak(s) in the Dutch Bible belt. I called it. I did not want to be right. However, measles in the developed world have a mortality rate of 1 reported death per 1000 reported cases. Last week, the reported cases in the Netherlands reached 2016 of which 121 had been treated in the hospital, 61 with pneumonia and 1 with encephalitis. It was just a matter of time. And while the death of one young woman, as tragic as it may be, cannot be compared to the death and devastation that Chernobyl caused, it would have been totally preventable. Bitter.

Get your MMRs.

Sharyl Attkisson and CBS Dehumanise Autists for Ratings

This past Friday Sharyl Attkisson, a journalist for CBS Network presented a "documentary" about a teenage autistic boy, Alex Spourdalakis who was pre-meditatively and brutally murdered by his mother and godmother.  If the murder of a special needs child by his own mother is horrific enough, Ms. Attkisson  and CBS add more insult to Alex's needless death by airing a carefully-staged faux documentary by none other than ex-doctor Andrew Wakefield.

Wakefield and his band of ghouls via his Autism Media Channel teamed up with Lisa Goes and Alex's mother Dorothy Spourdalakis creating the perfect storm of autism "biomed" crankery, narcissism and grotesque exploitation of a helpless teen autist for the shameless self-promotion that Wakefield has become so deft in.  Wakefield peddled this faux documentary along with other biomed stories to reality show execs earlier this year that featured Wakefield and his slimy crony gastroenterologist Arthur Krigsman that featured Wakefield as hero saving children from the horror that is autism.  I hope the sarcasm is noted.

It doesn't appear as though any of the represented networks were interested but Sharyl Attkisson and CBS didn't turn him down.  It is beyond disgusting that no one with editorial powers at CBS looked at this "documentary" and didn't even question its airing let alone question Ms. Attkisson's use of it with absolutely no journalistic ethics applied to the story.  Although since Sharyl Attkisson and CBS have been tools of anti-vaccine cranks that inhabit the cesspool known as Age of Autism, it shouldn't be surprising that they would think this is a nifty idea.

Alex Spourdalakis was a human being deserving of proper care and dignity, instead he was exploited to garner attention for the most execrable excuses for humans, one being his own mother.  Ms. Spourdalakis and her new-found mouthpieces Lisa Goes and Andrew Wakefield plead for help; she received several offers but only wanted an attorney.   There are so many inconsistencies in events leading up to Alex's death yet Ms. Attkisson and CBS exercised absolutely no due diligence verifying and fact-checking any facet of Wakefield's faux documentary. 

But that is not even the worst of Ms. Attkisson's and CBS's offences; they have given a platform to a group of people who routinely de-humanise autists and presented them as though they speak for the autism community.  These people are the same who say that children are better off dead than autistic.   Alex Spourdalakis was purposely shown nearly naked and restrained.  What kind of parent would not only allow such exploitation of her own child but stage it for ghouls like Wakefield to film and shop around for wider distribution?  Ms. Attkisson and CBS have promoted the dangerous idea that disabled people are expendable and their murderers are sympathetic characters to be pitied for their burdens and admired for their sacrifices.

CBS and Sharyl Attkisson owe Alex Spourdalakas and the autism community an enormous apology, a retraction of the story they aired and a real journalistic piece on the escalating victimisation of and violence perpetrated against disabled people.  They are the victims, not their murderers.  I urge you to contact CBS at the following to air your disgust (politely please) at their portrayal of the Spourdalakis case and the wider message that it's acceptable to exploit and murder special needs people:

CBS Chairman Jeffrey Fager, c/o CBS News, 524 West 57th Street, New York, N.Y. 10019

cbsaudiencenews@cbs.com

(hat tip to lilady who acquired the contact information and is spreading it wide and far)

Other bloggers who have weighed in:

http://leftbrainrightbrain.co.uk/2013/08/31/whitewashing-the-brutal-murder-of-alex-spourdalakis/

http://thepoxesblog.wordpress.com/2013/08/30/it-is-now-okay-to-kill-your-child/

http://www.skepticalraptor.com/skepticalraptorblog.php/vaccine-deniers-think-murder-alex-spourdalakis-acceptable/

http://paulacdurbinwestbyautisticblog.blogspot.com/

http://sciencebasedpharmacy.wordpress.com/2013/09/01/no-autism-doesnt-justify-murdering-your-child/

Added 2 September 2013:

http://scienceblogs.com/insolence/2013/09/02/sharyl-attkisson-and-cbs-news-an-epic-fail-in-reporting-on-the-murder-of-autistic-teen-alex-spourdalakis/

http://www.sciencebasedmedicine.org/sharyl-attkisson-promoting-wakefields-narrative-about-murder-alex-spourdalakis/

http://sciencebasedpharmacy.wordpress.com/2013/09/01/no-autism-doesnt-justify-murdering-your-child/

http://www.harpocratesspeaks.com/2013/09/cbs-sympathizes-with-murderers.html

Added 3 September 2013:

http://www.mediaite.com/tv/cbs-news-must-retract-report-excusing-mothers-murder-of-autistic-child/

http://lizditz.typepad.com/i_speak_of_dreams/2013/09/cbss-sharyl-attkisson-this-time-an-apologist-for-murder.html

Dr Bob is horrified and rushes to get his name removed from anti-vaccine group

naw, not really.

Then again, members of that anti-vaccine group that made Dr Bob Sears their administrator tell me that he is not posting there anyway, so the Parents and Others against Vaccination are probably just trying to artificially blow up their "legitimacy" (look, we have a real MD).

oh look, Matthew's digging himself in deeper

after some back and forth tweeting as a consequence of yesterday's poorly researched Daily Mail rehash, during which Matthew Mientka assured us that "he agreed with us all" and was informed of his various oversights

he now takes the biscuit with his lazy edits:

I am actually a bit speechless. We have lost a "new" from the title, but it now reads "Vaccines And Autism: Evidence shows "Strong Link" Between Autism And MMR Vaccine" - as if the whole body of scientific literature pointed to a connection, which is, of course, opposite of the truth. Matthew continues:

Scientific evidence has suggested a strong association between autism and the measles, mumps, and rubella (MMR) vaccine, following nearly a generation of contentious debate on the vaccine's safety.

Actually, it hasn't. Or if a paper has, it has since been rebuked or retracted. There is agreement in the scientific community that MMR is not linked to autism.

The 03.02 PM revision also still retained the 2002 statement of the former alleged spokesman of the British National Autistic Society, squeezed between more recent info making it appear as if Harris still was the spokesman for the NAS (which he isn't) or the NAS actually called for the suspension of the MMR (which they aren't):

I now no longer assume a lazy journalist was out for a quick headline, beating others to the story. I now assume either complete incompetence or wilful misrepresentation of the facts.

Edited to correct that Mr Harris is actually working for Jabs, a UK anti-vaccine organisation. This is a mistake that Mr Mientka took from the Daily Mail web site, but the BBC had it right in 2002.

Trau schau wem (a Dr Bob post)

dedicated to Chris Hickie, MD, PhD

It's been a while since we talked about Dr. Bob Sears, the author of The Vaccine Book, in which he advertises his "alternative vaccination schedule" (which almost doubles the number of office visits at $$$). Dr. Bob, as he likes to call himself, has been widely criticised for his anti-vaccine-critical stance, by us and many others. Don't know how people get the idea he could be anti-vaccine, actually - cannot be his staunchly pro-vaccine friends, like Andy Wakefield

It cannot be his absolutely unwavering pro-vaccine activism on Mothering.com:

 

For any parent who decides not to vaccinate, I don't try to talk them into vaccinating. Going unvaccinated is not a dangerous choice. It's a reasonably small risk.

It cannot be his well measured and positive foreword to an unreservedly pro-vaccine book:

.../... blablabla .../...

With so much care not to be mistaken for someone who is actually against vaccination, I must wonder how Dr. Bob Sears ended up one of the administrators of the:

Parents and Others against Vaccinations 

(my emphasis) facebook group. Ever so slightly embarrassing to get caught on that one amongst anti-vaccine's finest:

If I had not done so already, I would seriously seek my vaccine information somewhere else.

*Trau schau wem = watch whom you trust

Dutch measles outbreak: 141 more cases this week, no death reported (whew)

The new measles numbers and map have been released, the past week saw 141 new cases of measles for a total of 921. Luckily no death has been reported, and I hope it stays that way.

Have a look at the map - the new cases are red, the old ones grey. See how the majority of the new cases stays along the Bible Belt and only the odd case escapes herd immunity and pops up in areas of >95% MMR coverage. I hope the Dutch are going to release an animated map at some point, because it just so beautifully illustrates the principles of epidemiology.

Matthew Mientka, Medical Daily, takes the prize for Daily Mail necromancing

and the piss poorest, most irresponsible and non-researched reporting I have seen in a decade and I have seen a lot. His latest piece in the Medical Daily's "Healthy Living" section is headed:

In his write up, Mr Mientka essentially recycles a Daily Mail article - this one:

which reports on a paper from Dr Vijendra Singh which finds inappropriate antibodies in autistic children vaccinated with MMR. If that sounds both familiar and old, it is not surprising. That article is 11 years old! Granted, as previously blogged by Liz Ditz and jdc325, the Daily Fail does not often provide date stamps on their articles, but the page info clearly has 2002-08-09 as a publication date. JDC did write to the Daily Mail in 2011, but it seems they did not add a date. However, the fact that the "current" measles cases in the Daily Mail article are compared to "the last quarter of 2001" should have given Mr Mientka a hint. Or if he misread that, seeing Andrew Wakefield being referred to as "a British expert", who "found fragments of the measles virus from the MMR jab in the guts of autistic children"..."earlier this year" should have made him suspicious.  Or that the article is "no longer" accepting comments? At the very least, a quick check with the National Autistic Society in the UK would have shown them NOT to call for suspending the MMR and Jonathan Harris has not worked for NAS since 2008 anyway is the Birmingham contact for Jabs. It is one thing for an anti-vaccine cureby or granola-mummy page to fall for such an obviously outdated article, but a journalist, one would think, should be a bit more careful. At the time of me writing this, the article had been tweeted 18 times.

Todd W. was fast to ask Mr Mientka for his sources - the answer was a bit vague:

This one, a few minutes later, is a bit more promising:

Yes, please! In all likelihood, everyone will still be playing "whack a geriatric mole" for weeks, thanks to one person's shoddy research.

Edited to correct that Mr Harris is actually working for Jabs, a UK anti-vaccine organisation. This is a mistake that Mr Mientka took from the Daily Mail web site, but the BBC had it right in 2002.

Measles in the Netherlands: I'll call it

I was tempted last week, when the measles cases in the Dutch Bible Belt topped 600, but then I didn't. It suddenly appeared morbid, petty and like I wanted it to happen. By last Thursday, 780 measles cases had been reported in the current outbreak. So I'll do it.

There'll be a death. Soon.

In Europe, for about every 1000 reported measles cases, there is one death. The latest outbreak was in Wales, it ended last month with 1219 cases and one death, Gareth Colfer-Williams, who died of giant cell pneumonia, a specific complication of measles. But that particular area in the Netherlands has had its own outbreak in 1999/2000, totalling 3292 cases, over 150 hospitalisations and 3 deaths. It is eerie how this pans out to 1 in 1000. As a side note, 94% of patients were totally unvaccinated and only 1 of the 3292 had had 2xMMR. In fact, the vaccine works so well, that unvaccinated individuals were 224 times more likely to acquire measles than were the vaccinated. But I am getting side tracked. I called it. I hope I am wrong.

The View of Jenny McCarthy

Jenny McCarthy, well known to those following anti-vaccine issues, is vying for a full-time position on ABC's The View in light of departing hosts.  Ms. McCarthy should not be given a platform that can potentially legitimise her and garner a wider audience to spread her anti-vaccine propaganda as Phil Plait writes about.  But even more insidious than her anti-vaccine activities, which she has tried to back away from in an attempt to re-vamp her failing image, is her role as organiser, spokesperson and sponsor of AutismOne.

AutismOne is the crank conference for all manner of quack "cures", "treatments" and "causes" (namely vaccines) for autism spectrum disorders.  The speakers and nostrums being touted at AutismOne are nothing short of child abuse of special needs children.  I have compiled a short list of the most notable "doctors" who Ms. McCarthy signs on to present at AutismOne year after year:

Andrew Wakefield has been named by TIME magazine, one of the great science frauds.  Dr. Wakefield has been struck of the UK's General Medical Council (analogous to the U.S.'s American Medical Association) for over 40 counts of unethical behaviours regarding his treatment of special needs children and others. Dr. Wakefield has also committed fraud regarding his findings that autism was caused by the MMR vaccine by fabricating data.  These studies were subsequently retracted.

Arthur Krigsman is a gastroenterologist who supports Andrew Wakefield's fraudulent science regarding MMR and autism.  He has been disciplined in numerous states for his own unethical behaviour.

Anjum Usman is being sued along with Dr. Dan Rossignol by a parent of an autistic child for unethical medical treatment of his child with chelation.  Dr. Rossignol didn't even examine the child yet prescribed chelation based upon bogus tests performed by Dr. Usman.  The father charges that his child has suffered harm as a result.  Illinois regulators are also seeking charges against Dr. Usman for, "“unprofessional, unethical and/or dishonorable conduct.”

Jeffrey Bradstreet has been lambasted by OAP Special Masters for his unethical and unsubstantiated treatment of autistic children with dangerous and unproven therapies including chelation, HBOT and potent prescription medications. Dr. Bradstreet also recommends exorcism for the "treatment" of autism.  Additionally, Dr. Bradstreet recommends stem cell therapy which is a potentially dangerous and completely untested therapy for autism.  Dr. Bradstreet even recommends unscrupulous, unregulated off-shore clinics.  Dr. Bradstreet also recommends "fecal transplants" for autistic children which is every bit as dreadful as it sounds.  Dr. Bradstreet tries to medicalise the procedure and provides instructions for laypeople, however parents' "biomed" discussion boards convey do-it-yourself "fecal transplants" based upon Dr. Bradstreet's advice that don't involve "donor" testing and amount to having a family member defecate in a bucket, mix it with some water, put the faecal slurry in a pastry bag and force the contents into the rectum of the autistic child.

Dr. Mark Geier and his son David Geier regularly present at AutismOne conferences.  Dr. Mark Geier's medical licence has been either suspended or revoked in all thirteen states he was licensed.   Additional charges against Dr. Geier are pending.  David Geier has been charged with practising medicine without a license.  The reason that the Geier's have faced these charges is for using a powerful chemical-castration drug, Lupron in larger-than-adult-doses on autistic children and then chelating them.  This practise is extremely dangerous, cruel and has no medical basis whatsoever.  The Geier's also justify their use of Lupron to insurance companies by coding for "precocious puberty" even in teenage patients.  A fuller explanation of the Geier's gruesome experimentation on autistic children can be found here: http://en.wikipedia.org/wiki/Mark_Geier and here: http://articles.chicagotribune.com/2009-05-21/news/chi-autism-lupron-geiers-may21_1_vaccines-and-autism-mark-geier-autism-research

Mayer Eisenstein has also had actions brought against him for insurance fraud and several civil malpractice and fraud suits; this is just one of the doctors that work for Eisenstein.   Dr. Eisenstein proudly announces his anti-vaccine stance and is in business with the Geier's injecting autistic children with Lupron and chelating them.  Dr. Eisenstein is a regular fixture of AutismOne.

Kerri Rivera was a speaker at AutismOne this year and last year and presented her "cure" of autism with Miracle Mineral Solution (MMS) which is an industrial bleach.  Ms. Rivera is not a doctor and promotes the use of MMS as an enema, drink and bath to "cure" autism ( http://www.sciencebasedmedicine.org/index.php/bleaching-away-what-ails-you/ ).  Jenny McCarthy through AutismOne gave this woman a stage to disseminate this repulsive "treatment" to parents of autistic children who are desperate and vulnerable.  MMS has been banned in numerous countries and the FDA has issued a warning against it.

I urge you to write to ABC here and/or please sign the Change.org petition to let ABC know just who they are courting for one of their shows.   For the sake of brevity, you can link to this post to highlight Ms. McCarthy's dissemination of abusive "treatments" of special needs children.

Meanwhile, measles break out in the Dutch Bible Belt...

The Netherlands do have a "Bible belt" - an area which has a high density of fundamentalist protestants, characterised by their vaccine refusal (and a generally conservative attitude amongst the very liberal Dutch). This has, over the years, given rise to serious outbreaks of vaccine preventable diseases, extending far beyond the belt region. For example, in 1978, a polio outbreak in the Netherlands, totalling over a 100 cases, of which 80 (all unvaccinated) were paralytic and one was fatal, spread to Canada and the United States leading to 14 cases of paralytic polio in unvaccinated Amish, and a further 2 non-paralytic cases in unvaccinated non Mennonite in the area. Apart from the molecular analysis of the virus, showing that the cases were related, the infection chain was also clear:

During the 1978 outbreak, members of the affected religious group traveled from the Netherlands to Canada, where cases subsequently appeared. An Amish family from an Ontario town 15 miles from the affected area moved in late summer 1978 to the Pennsylvania town where the first U.S. Amish case subsequently occurred, in January 1979.

Another polio outbreak struck the area in 1992/3, most of the 71 cases amongst the unvaccinated Bible belt inhabitants. This outbreak also spread to Canada.

In 1999/2000, a measles epidemic struck the Bible belt and neighbouring regions, totalling just under 3300 cases, of which 94% were entirely unvaccinated, and only one patient had had both MMRs. 16% had complications, over 150 were hospitalised, and 3 patients died. Importantly No association was observed between preexisting illness and either reason for admission (P = 0.5) or residual symptoms at discharge (P = 0.5) contradicting the notion that measles are a generally "harmless" disease in "healthy" children.

More recently, in 2004/5, rubella (the "r" in the MMR) swept through in the Bible belt, also spreading to Canada. The consequences were devastating:

In The Netherlands and Canada, 387 and 309 rubella cases were reported, respectively. Of these, 97% were in unvaccinated individuals of orthodox protestant denomination. Reported consequences of rubella in pregnancy were 2 fetal deaths and 14 infants with congenital infection. Of the latter, 11 had clinical defects including deafness in all but eye defects in none. 

The reason should be crystal clear - low vaccination uptake. The Dutch equivalent of the CDC, the RIVM publishes the numbers in handy maps - see the MMR vaccination coverage in the 1998 cohort (as school children, the baby chart was not available) vs measles cases:

The darker, the bad

Now, 13 years after the last big outbreak (enough time for the next generation of unvaccinated Bible belters), the next outbreak has started, with one protestant primary school boasting an impressive 1 in 5 pupils infected:

the "belt" even more visible in infant vaccination gaps

This is an impressive illustration how vaccine refusal (in religious and quasi-religious groupings) leads to large national and international disease outbreaks, causing significant illness, disability and death. These communities effective provide CPR to diseases that should have long been eradicated by providing a "renewable" population of susceptible individuals. Since it may not be possible to change the attitude of certain groups, it is even more important to uphold vaccination coverage around them, to reduce the potential for spread as much as possible.

Micha is dead

13 years after catching measles from an unvaccinated pre-teen in his pediatrician's waiting room and almost 9 years after the onset of SSPE, Micha has passed away. My heart goes out to his parents, Oxana and Peter, to his three brothers and to the countless people who loved Micha and whose hearts he touched!

ETA: you may leave condolences. I will not tolerate discussion in this thread.

Insolent demands and reality

There is a measles outbreak in Wales. 1181 cases of measles have been reported since 1 November 2012. Quite impressive for a small country (Wales has about 3 million inhabitants). Public Health Wales have done a stellar job in reporting numbers, breaking them down into the different Welsh regions and they run a Facebook page on which you can ask questions and will get them answered. Countless weekend and in-school clinics were run to get the Welsh youth protected (a lot of teens did not get their MMRs/or MMR booster in the wake of Wakefield's manufactuversy).

Despite PHW's fabulous work, the pro-disease faction have been up in arms. First of all, they abused the fact that not all cases were laboratory confirmed to claim that there is no outbreak, it is fabricated, all to cause panic to increase vaccine uptake (like good vaccination uptake was a bad thing). Never mind that laboratory confirmed cases are catching up with the reported numbers (like they should, those tests take some time to come back); that is part of the conspiracy, too (lowers voice "they noticed that numbers don't match, so they are making new numbers up" - really).

Equally suspicious, according to the anti-vaccine-critical, is that the vaccination status of reported cases is not reported in real time. PHW quite clearly stated on their web site that they'll publish a full report after the outbreak:

and explained on their Facebook page (multiple times) which cases were tested:

many anti-vaccine posters still insist that the delayed publication of numbers was fishy (after all, GPs should know whether their patient has been vaccinated or not) and continually allege that real time reporting was somehow important for their decision.

I call bullshit - there is nothing unique about the Wales outbreak. Last year, just north east of Wales, the Merseyside measles outbreak saw 359 confirmed measles cases, of which, not surprisingly, only 12 (3.3%) had received 2 MMRs. Those hugely relevant numbers (the two outbreaks within a year and 150 miles of each other) are convincing truly hesitant parents:

Meanwhile, I received the following letter from my Health Board:

It seems that although we have been registered with the same GP for many years, and said GP should have all of our children's vaccination records, and I have in writing that they are up to date, their Child Health System has our son down as "not [having] completed the full course of 2 doses of MMR". Obviously, ascertaining vaccine coverage is not quite as trivial as some think.

Thank you PHW for checking before publishing data on vaccine coverage without verification.

Now if you or your child really have not had 2 MMRs - go get them now. MMR is highly effective in protecting you and your loved ones from measles.

Bad Times for Australian Anti-Vaxxers

Meryl Dorey of the Australian anti-vaxx group (although they hate being called that) Australian Vaccination Network or AVN has lost her bid to silence some of her critics via Apprehended Violence Orders (AVO).  Ms. Dorey sought AVOs against Peter Bowditch, founder of the Millenium Project, Daniel Raffaele, founder of the Stop the AVN Facebook page and Daniel Buzzard, a sceptical blogger and outspoken opponent of Meryl Dorey and the AVN.  Ms. Dorey's AVO petition against Mr. Bowditch was thrown out and apparently she cried about it.

But she suffered a setback last month when her AVO was thrown out against one critic, Peter Bowditch, who she claimed posted harassing and abusive messages online.

Unfortunately, Dan Raffaele agreed to the order for lack of will to fight it:

Mr Raffaele, who denied making any threatening calls, said he eventually agreed to the order because he was "sick of dealing with it", although he made sure her "gag order" was struck out.
"The only thing I was never going to agree to was being silenced on the internet," Mr Raffaele said. "The information (the AVN) spread is dangerous and it's not based on anything other than lies - and it costs lives."

All Ms. Dorey succeeded in doing was ensuring that Mr. Raffaele wasn't doing to begin with, which was personally harassing her.  She couldn't silence him though.

Mr. Buzzard is defending his complaint:

Western Australia-based Dan Buzzard, another AVN opponent, said Ms Dorey probably saw taking out the AVOs as a "quick and easy" way to silence her critics.

He will defend the application today.

It is obvious that Ms. Dorey is abusing the laws of her land to silence her critics, a play out of the book that other anti-vaccinationists have done because they want to spread their fear and lies uncontested.  Barbara Loe Fisher, Meryl Dorey's American counterpart and head of the also misleadingly named National Vaccination Information Network (NVIC) tried to sue one of her critics Dr. Paul Offit. The suit was dismissed before even being heard and she whined miserably about it.  JB Handley also tried to sue Dr. Offit and was unsuccessful (correction for the actual settlement here).

We wish Mr. Buzzard defeat over Ms. Dorey's frivolous complaint and hopes she cries again.

But that is not all. New South Wales (NSW), Australia's legislation is submitting a bill that would prevent unvaccinated children from entering pre-school and childcare centres.

Labor leader John Robertson will introduce amendments to the public health act which would give early childhood centres the right to refuse kids who haven't had their shots.

The move comes amid concern about high rates of unvaccinated children in some parts of
 NSW as well as the emergence of so-called "anti-vaxxers" who refuse vaccination.

Some parts of NSW had lower vaccination rates than Rwanda, Mr Robertson said.

In other words, no jabs-no school.  Congratulations AVN!  And another inadvertent action due to Meryl Dorey and her misnamed AVN is the unanimous denunciation of Meryl Dorey by parliament and her deceptive work along with greater scrutiny of dubious healthcare practitioners.  Keep up the great work Meryl, you're your own worst enemy.

Fear mongering and responsibilties - UK private vaccine clinic fuels MMR fears

Wales is currently heading the leader board, unfortunately not in a good way (like for rugby), but for measles infections in the Western hemisphere. Since February, Wales has had nearly 900 reported measles cases, 80 of them hospitalised, and, as feared, now the first suspected death, 25 year old Gareth Colfer-Williams. A lot has been written about responsibility. Obviously, Andrew Wakefield came up as the main culprit, who in turn blamed the government for the outbreak, which they rejected. To be honest, to solely blame Wakefield for the MMR mess would be too much credit to the man. The MMR mess is a media manufactuversy as beautifully summarised by Ben Goldacre. And the greed for the headlines has not stopped, and Wakefield is still given front page coverage by irresponsible papers.

Meanwhile, clinics providing single vaccines for measles and rubella are having a field day. Under the guise of "we are just responding to parental fears" one private provider of single measles vaccines, the Children's Immunisation Clinic (CIC), is advertising their services (£ 50/~US$ 75 registration plus £ 110/US$ 165) playing on the MMR-autism lie, while making totally untenable claims. This starts off with:

A high percentage of the children we vaccinate also have allergies and excema which indicate they may not have a perfectly functioning immune system – and even so we have no recorded adverse reactions.

Wow - that is impressive. I wonder how they do that, given that the Rouvax for example, one of the vaccines that CIC is offering, has the following adverse effects (my bold):

The most common side effects (in more than 1 in 10 subjects vaccinated) seen in clinical trials were irritability/agitation and rhinopharyngeal catarrh.
Other side effects that occurred in more than 1 in 100 subjects vaccinated in clinical trials were fever >38°C, injection site reaction, rash/cutaneous eruptions, conjunctivitis, nausea, vomiting, abdominal pain, diarrhea.

They then post a google link to Hannah Poling:

In October 2008 Hannah Poling an autistic child won a huge payout from a triple vaccine manufacturer, who said that she had a DNA genetic predisposition to become autistic given the MMR vaccine More Info…

 and concluding with this beauty:

In 2009 a Dr Walker in the USA has studied 275 autistic children and found in a large percentage of the cases that these children had the live Measles virus living in their gut after vaccination with the triple MMR .You can see more about this on the Daily Mail online. We do not use the same MMR or Measles virus vaccine in the vaccine we have chosen to use.

At this point already, I know I am never going to entrust my child to this clinic. The Daily Mail as a source for medical information? Honestly? The article they mean is the one previously bemoaned by Liz Ditz to have been posted without time stamp. Everything else is false, too.

Steven Walker's work was presented as a poster at the IMFAR conference in 2006, so no "study", not in 2009 either.

The abstract reports on results of 82 kids, 70 of them supposedly had measles vaccine virus in the gut. They tell us they have samples of >275, but have not analysed them all. Also, we know since Dr Bustin's testimony to the Autism Omnibus proceedings and Hornig et al that measles virus has not and cannot been found in the guts of > 80% of autistic children.

I think this claim "We do not use the same MMR or Measles virus vaccine in the vaccine we have chosen to use" is a lie. We already know that the clinic have not looked at Walker's data, since they misrepresent his findings. There is actually no way the people at the clinic can know what vaccines the children Walker looked at had received, because it is not reported in the abstract and a full paper has not been published since 2006. Given that Arthur Krigsman is the senior author of the abstract and children have been flown to him certainly at least from the UK, it is not clear which measles vaccine strain they had been vaccinated with. The French Rouvax, CIC are offering contains the Schwarz strain, which is also the measles strain used in GSK's Priorix, often used in Europe, the Indian Sii M-Vax, also on offer at CIC contains the Edmonston-Zagreb strain, also contained in the Swiss MMR-Triviraten (Berna) (CIC also import vaccines from China and Russia, if someone knows what vaccine strain is in those, email me).

Now, tell me how you can interpret the above facts and let the clinic appear in a good light. At best, their research was irresponsibly shoddy and they conveniently believed the Daily Mail. At worst, they are intentionally fuelling parental fears to sell their singles with false claims. It gets worse though - on the side bar, on the lower right, the clinic claim:




No Autism in over 10 years and amongst 18000 Patient Record Cards?! That is an outstanding record and it sounds dangerously like a "warranty" (I am not a lawyer, but a lawyer friend of mine pointed this out). Absolutely amazing, especially given that autism/ASD prevalence in the UK has been published to be 1 in 67, so they should be looking at about 282 patients on the spectrum, give or take a few. The reason for their "Clinic Highlight" might be their rather unorthodox method of assessment...  "We [the clinic] ask you [the patient] tell us if you have an adverse reaction within a few days of the vaccine."


They are obviously way out of their depth now, because it is all fine and well to make exaggerated claims when it is "only" about people's money. But now Wales is steering towards breaking the 1000 mark of measles cases (probably by next week), children and young adults are very very sick and one might have died, and the tolerance wears thin. While CIC is still keeping up appearances for the BBC, they seriously lost it in response to a short article in last week's Sunday Times and in the middle of a massive rant (which they really want you to read in its entirety and not quote out of context, so they mention it twice, probably because they know how tedious their rant is) about "offering singles will increase herd immunity" and "not politicising the issue" slip in this paragraph (all typos are [sic]):

9) CIC is not judgmental about parents’ choice of vaccine (any vaccination ,generally ,is better than none) nor does it have any preconceived ideas as to the causes, be they single trigger(s) or perhaps even several different combinations of triggers.
Anecdotally though,  that portion of the parents who tell us their stories , all confirm that there was a dramatic change in behaviour, either with their child ,from their circle of friends , neighbours or work colleagues; and these families make up a significant minority proportion  of our population,
The emotional and financial burden on the family, the limited funding of the UK’s Health sector all point to potential benefit of further timely research into those specific cases which may then be identifiable as being preventable An unencumbered choice for either single or multivalent MMR vaccine options would do less harm  than the current situation of a large portion not willing to engage in any vaccination programme.

Goodness, somebody save them from themselves. CIC are in a hole, they should stop digging. If they wanted to keep up the illusion that they are there "to help" instead of setting up shop in Swansea in the middle of an outbreak and charging full price for their services, maybe they should have offered their singles at cost? Just to maintain the illusion that they weren't hell bent on keeping the MMR autism lie alive for their own business interest? Just an idea.