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ABC to present “Wacky Church Under Fire Over ‘Miracle Cure’ for Autism”

27 Oct

MMS. Miracle Mineral Solution. CD. Chlorined Dioxide. Call it what you want, it’s a scam. Worse than that, it’s abusive. And thankfully it’s getting some national news attention.

ABC’s 20/20 will present on Friday, Wacky Church Under Fire Over ‘Miracle Cure’ for Autism

Here’s one section of the website for the news segment:

“They’ve got their own Facebook group. There are people admitting to using this stuff on their children. Children are experiencing symptoms,” Eggers said. “You are doing it at the expense of these defenseless children. How, how, how can you not call that evil?”

MMS/CD whatever you want to call it, is sold with a bunch of science-sounding mumbo-jumbo. Believe me (a Ph.D. scientist with 30 years of experience), the explanations given by people like Kerri Rivera and Jim Humble for what MMS does amount to science nonsense.

Thank you ABC for taking this on. Please don’t walk away from this story, keep on it. We need this abuse to end.

By Matt Carey

Book review: Neurotribes by Steve Silberman

25 Aug Cover-large

A book I have been waiting literally years for comes out tomorrow. I’m speaking of Neurotribes (Amazon link), a book by Steve Silberman. I was lucky enough to obtain an advance copy to review. First let me say that there are a number of good reviews of Neurotribes by Steve Silberman already on the web. I highly recommend this one by Emily Willingham, which includes an interview with the author.

Having referred the reader to an excellent review, I’ll start here with a simple recommendation: buy the book. Or, at least, find a copy somewhere and read it.

If you are autistic, read the book. Silberman gives one of the most sensitive discussions of autism a non autistic can give.

If you are a parent or loved one of an autistic, read the book. If you are at the beginning of the journey, you may want to spend your precious extra time now on books that help you advocate (like special education focused books), but there will be a time when you want this book and will be grateful it’s on your shelf. If you’ve already gone through the advocacy learning curve, it’s a good book to get.

If you are a professional and think you understand how our present understanding of autism came about, you need to get this book. You will be surprised with what you didn’t know.

If you are not in the autism communities, Silberman is a wonderful writer and the book will give you a great read and you will learn a great deal about autism, autistic people and non-autistic people.

Neurotribes is a rather thick book on what seems a specialized subject and I worried at first that it wouldn’t be accessible or interesting to the average reader. But I was immediately struck by how beautifully Silberman’s writes. It is very accessible and entertaining to a general audience.

By now readers are probably wondering when I’m going to stop recommending the book and start reviewing it. Answer: now.

Autism is comprised of many very disparate topics and Neurtribes captures that, with each chapter touching on the various aspects of autism. First and foremost, autism is about people. Autistic people primarily. And Silberman approaches his book with a great sensitivity towards autistics. The book begins and ends with autistics. We start with Henry Cavendish a historical figure who was very likely autistic and ends with an epilogue about Mark Rimland, who has a key place in defining current perceptions of autism is. Mark’s father was autism researcher Bernard Rimland, who is best remembered for his role in defeating the idea that autism was caused by bad parenting. Mark was also one of the role models for the fictional character Raymond Babbit–Rain Man.

Silberman ends the book with a simple statement. And like many simple statements, many of us forget the message:

Midway through the journey of his life, Mark has the most precious and elusive thing that anyone can hope for. He is completely at home on earth.

Autism is a disability. It is a different operating system for the brain. It is a difference. It is so many thing. But all of us, autistic or not, autism parents or not, would do well to follow Mark’s example. Find our place.

Autism is also about non autistics. People who love autistics and people who research autism (and there’s a lot of overlap in those groups). And Silberman pulls all the various groups together in his telling of the story.

Silberman establishes himself as the foremost expert on the history of autism. How did Kanner and Asperger independently come up with the concept of autism (hint–they weren’t completely independent). Why did Asperger focus on the less clearly disabling aspects of autism (hint: he was at work at a time when disabled people in his country were rounded up and killed). We can go on and one, but these little snippets do not do justice to the depth that comes from the fact that Silberman has spent the past four years researching and writing this book.

The depth that Silberman brings to autism’s history (and present!) could easily become bogged down in the details. Neurotribes avoids this without sacrificing the detail. Autism is told through the people, people with personalities and people placed in the context of their time and culture. And that’s what makes this more than an example of thorough research but of skillful writing. We not only hear about Kanner and Asperger (the two credited with first describing autism), but of the people in their labs and the people who followed them. But mostly, of autistics. And not just autistic patients in clinics. We meet one of my personal favorite people, Leo Rosa (an autistic young man) and his mother Shannon. I met Shannon and Steve at about the same time, at IMFAR, an autism science conference, in 2011. We meet many more people and the book is influenced by literally hundreds of people, autistic and non, for whom there just wasn’t room in the book. By telling the stories through people, the book becomes a real read.

I realize that I have yet to discuss neurodiversity. The full title of the book after all is NeuroTribes, The Legacy of Autism and the Future of Neurodiversity. Silberman introduces the topic thus (referring to his 2002 Wired article “The Geek Syndrome”)

One of the most promising developments since the publication of “The Geek Syndrome” has been the emergence of the concept of neurodiversity:the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions. Though the spectrum model of autism and the concept of neurodiversity are widely believed to be products of our postmodern world, they turn out to be very old ideas, proposed by Hans Asperger in his first public lecture on autism in 1938.

and in another place, he states

Neurodiversity advocates propose that instead of viewing this gift as an error of nature—a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion—society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support. They suggest that, instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present.

One last note: autism’s history has some very low points. It can be very difficult to read about the Nazi eugenics program or the way some non-Nazi’s treated their autistic research subjects. I know that some, especially autistics, will find these sections painful to read.

That said, in case my recommendation was too subtle above: I recommend buying the book🙂

Here are more reviews:

The Atlantic has Before Autism Had a Name.

The Guardian has: Neurotribes review – the evolution of our understanding of autism

The New York Times: ‘NeuroTribes,’ by Steve Silberman.

There are more if you search a site such as google news.

Cover-large


By Matt Carey

note: I have personally met the author of Neurotribes.

Robert Kennedy, why can’t you actually apologize? My kid’s brain is not gone.

16 Apr

Robert Kennedy is here in my home state, making disparaging comments about my kid. Not specifically, you see. His comments were about those whom he wrongly considers to be vaccine injured, but that includes autistics and, as a part of that, my kid.

He is quoted by the Sacramento Bee as stating:

“They get the shot, that night they have a fever of a hundred and three, they go to sleep, and three months later their brain is gone,” Kennedy said. “This is a holocaust, what this is doing to our country.”

Really? Their brain is gone?!?

Because, you know, autistics don’t have brains. They’re gone.

How insulting and ignorant can this guy be? Well, before you answer that realize that: he doubled down on his mistake. He apologized, but just for using the term “holocaust”. Stating that kids

“I want to apologize to all whom I offended by my use of the word to describe the autism epidemic,” Kennedy said in a statement. “I employed the term during an impromptu speech as I struggled to find an expression to convey the catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families.”

Mr. Kennedy leave my community alone. We are not your tool to attack vaccines, Mr. Kennedy. Your ignorance and stigmatizing comments are doing damage to my kid and autistics of all ages.

Here’s the thing: the autism as a vaccine epidemic idea is the most damaging idea since the refrigerator mother theory. It fuels an industry of charlatans who use the one two punch: you caused your kid’s autism, now let me sell you the cure. And it fuels stigmatizing language: telling an entire group of people that “their brains are gone” is so wrong, so very wrong, so damaging that I can’t believe you let that stand.

Sadly, I can believe that you let it stand. Most other people I would suspect would be quickly apologizing.

Mr. Kennedy, you have been given every gift imaginable. And I mean gift: you did nothing to earn these. You are a wealthy white male in the United States, with a famous name to boot. Again, none of this earned. I bring this up because as the parent of a disabled kid I am so saddened to see gifts wasted. Thrown away, no less. You could be using your brain to do so much more, and yet you remain fixated on vaccines and you use kids like mine in your attacks.

You are not done apologizing. Not by a long shot.


By Matt Carey

D.A.I.R. Foundation 2013 tax form, about $100k in revenue, $20k in program expenses

5 Mar Dr-Wakefield-Solina-and-Lee[1]

A few years back Andrew Wakefield decided to sue the BMJ and Brian Deer.  This followed a series of articles and public statements that Mr. Wakefield’s work was an “elaborate fraud” and Mr. Wakefield himself was a fraud.   Lawsuits involve attorneys and attorneys cost money, so a few efforts arose to help Mr. Wakefield pay for these costs.  I believe the first was the “Dr. Wakefield Justice Fund”.  This didn’t come across as a major effort, the twitter account made three tweets, the website appears to be down (here’s an archived version), and it doesn’t appear to have made charity status.  Another effort that came out was the Academic Integrity fund.  Again, the website seems to be down, but again there’s the archive.  In many ways it’s too bad that site didn’t continue as it because a place for Mr. Wakefield to place essays.  And his writing, while tedious, produced interesting insights into his thoughts. For example:

Obama must meet the autism tragedy head on and deal with the proximate cause of the epidemic – unsafe and untested vaccination practices.

This from a man whose supporters claim never says that vaccines cause autism.

And we can also read the approach that would later prove fatal for Alex Spourdalakis: autism must be considered a medical, especially gastrointestinal, condition and that psychiatric medications to be avoided and that are behind mass murderers.

Tragically, predictably, there will be more events like at Sandy Hook Elementary. The vast number of individuals with developmental disorders presages such events. This is not because of their diagnosis, per se, but rather I would suggest, because they may be at increased risk for adverse reactions (due to pre-existing conditions) and are being inappropriately medicated with drugs for which violence is a recognized adverse reaction. These drugs are being prescribed by a “mainstream”

Not all the fundraising efforts failed.  We also saw the rise of a group calling itself the “Defending Academic Integrity and Research” or D.A.I.R. Foundation.  D.A.I.R. states under “what we do”:

Justice is accessible only to those who can afford it. D.A.I.R. Foundation provides legal aid, coordinated public relations support, and educational materials that support the work of our sponsored applicants.

Reading their site, one applies for support and D.A.I.R. provides financial support, PR and other help.

D.A.I.R. Foundation has an open request for proposals from researchers, physicians, scientists, and academic policy drivers who have come under attack and are interested in applying for legal aid. Please Contact Us and note in the subject line “Applicant Inquiry”. Applicants follow an approval review process. Applicants who are accepted will be expected to agree to terms and conditions of the legal aid process to include partnership in strategy that assures success and can be leveraged in future cases, proceeds to D.A.I.R. Foundation following legal compensation, and development of educational and public relations materials. We also assist in reputation management

I emailed them asking for a copy of their “terms and conditions” but they did not reply.  I find it interesting that people are expected to work with D.A.I.R in developing educational an public relations materials, and apparently provide a share of the proceeds of any legal settlements they achieve.

They hold fundraisers, and it appears that Andrew Wakefield is a featured speaker at these events.  The event linked on their website was not inexpensive, but also appears to have left a large number of seats unsold. (click to enlarge)

DAIR fundraiser

Of course this leaves us wondering, how much money did D.A.I.R. bring in and how did they use it?  Well, here’s the D.A.I.R. Foundation 2013 form 990.

From this we learn that they brought in $104,488.  Of that $20,859 was spent on a grant (I assume to Andrew Wakefield).  But that is less than 1/3 of their expenses. (click to enlarge)

DAIR 1

They spent $14,889 on salary for Dawn Loughborough (the executive director). They spent $15,256 on catering and $7,383 on travel, plus other expenses. (click to enlarge)

DAIR 2

Or, to put it simply: they took in about $100k.  Of this about $20k went to actual program expenses, over $45k went to salary and other expenses and about $37k was left in the bank.

If you dontated, about $0.20 of each dollar went to program expenses (presumably Mr. Wakefield’s expenses) about $0.45 went to overhead and about $0.35 may be used for program expenses at a later time.

Should this grant have gone to Mr. Wakefield, I don’t see that covering a large fraction of his expenses for his failed lawsuit.  Perhaps I’m wrong, but the effort involved multiple lawyers and many, many pages of documents.

By Matt Carey

Shannon Rosa: Why Do Autism “Experts” Say Such Awful Things?

31 Dec

The past few months has seen a number of instances of written and oral statements that are damaging to autistics. Over at Blogher, Shannon Rosa has an article up on “Why Do Autism “Experts” Say Such Awful Things?” Here’s the first paragraph, but the full article is well worth the read.

You want to break my heart? Show me the latest mainstream media piece about autism written by or featuring quotes from a non-autistic autism expert. Almost without exception, that expert is going to say something that self-righteously dehumanizes, endangers, invokes pity for, or degrades my autistic son. My beloved, delightful, innocent son—who has done nothing to deserve such scorn.

Emily Willingham: winner of the 2014 John Maddox Prize for Standing up for Science

28 Oct

Emily Willingham is one of the best writers on the science and social aspects of autism. She also writes on other topics and is an accomplished researcher. Her journalism can be found at her site, EmilyWillinghamPhD.com, The Thinking Person’s Guide to Autism (the Site and the Book), DoubleXScience, Forbes, and elsewhere.

With all that in mind, it’s great to see that she’s been recognized for her work. SenseAboutScience.org has announced that she will share the 2014 John Maddox Prize for Standing up for Science:

Dr Emily Willingham and Dr David Robert Grimes are the two winners of the 2014 John Maddox Prize for Standing up for Science.

The announcement notes:

The judges awarded the prize to freelance journalist Dr Emily Willingham and early career scientist Dr David Robert Grimes for courage in promoting science and evidence on a matter of public interest, despite facing difficulty and hostility in doing so. The winners equally embody the spirit of the prize and, at this relatively early stage in their lives, have yet to receive recognition for their work bringing science and evidence to the public. Both Emily Willingham and David Grimes reflect Sir John Maddox’s passion for investigative journalism and for social engagement by young scientists.

On Emily Willingham in specific:

Emily Willingham, a US writer, has brought discussion about evidence, from school shootings to home birth, to large audiences through her writing. She has continued to reach across conflict and disputes about evidence to the people trying to make sense of them. She is facing a lawsuit for an article about the purported link between vaccines and autism.

The Prize is a joint initiative of the science journal Nature, the Kohn Foundation, and the charity Sense About Science. The late Sir John Maddox, FRS, was editor of Nature for 22 years and a founding trustee of Sense About Science.

And a statement by Michael Fitzpatrick, doctor, autism parent, writer and contributer to Left Brain/Right Brain:

Dr Michael Fitzpatrick, author MMR and Autism: What Parents Need to Know and trustee of Sense About Science, responded to the news about Emily Willingham: “She has provided a particularly valuable service in confronting specious theories attributing autism to diverse environmental agents, from milk and vaccines to endocrine disrupters and maternal antibodies. She has also exposed quack treatments for autism and challenged ill-informed reports suggesting a diagnosis of Asperger’s syndrome as an explanation of the behaviour of serial killers (pointing out that people with autism are much more likely to be victims than perpetrators of violent crime). As co-editor of the excellent Thinking Person’s Guide to Autism, she has helped to equip parents and people with autism with a critical approach to the evaluation of claims made by researchers and therapists alike.”

The full article is at SenseAboutScience.org.

by Matt Carey

Nick Walker on Neurodiversity: Some Basic Terms & Definitions

25 Oct

Nick Walker starts his introduction with “I’m an Autistic educator, author, speaker, transdisciplinary scholar, activist, parent, and martial arts master.” His writing is excellent and I’d highly recommend adding Neurocosmopolatinism to your list of blogs to track, if it isn’t there already.

A recent article by Mr. Walker covers the topic of neurodiversity clearly and accurately. It’s a great resource: Neurodiversity: Some Basic Terms & Definitions.

It is one of those articles I’d like to copy in it’s entirety. But instead I’ll send you to: Neurodiversity: Some Basic Terms & Definitions.


By Matt Carey