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The Autism Vaccine Controversy and the Need for Responsible Science Journalism

7 Jan

The Huffington Post has a new section on science. One of the first articles discusses the “Autism Vaccine Controversy”. In The Autism Vaccine Controversy and the Need for Responsible Science Journalism, Seth Mnookin starts out:

Earlier this week, The Panic Virus, my book on the controversy over vaccines and autism, was released in paperback. While there haven’t been many scientific advances in this particular issue since the hardcover edition was published — the evidence supporting vaccines’ paramount place in public health efforts and the total lack of corroboration supporting a causal connection between vaccines and autism remain as strong today as they were a year ago — there have been new developments in the story. Their coverage highlights an enduring passion of mine: The need for reliable, responsible science journalism.

Yes, Seth Mnookin, author of The Panic Virus, is writing for the Huffington Post, a site which has contributed greatly to misinformation about vaccines and autism. The Huffington Post has been home to David Kirby (who was a major promoter of the mercury/autism concept) as well as welcoming input from Jenny McCarthy and Jim Carrey, to name but a few of the poor choices for writers the Post engaged.

On PLoS blogs, Mr. Mnookin announced this new gig with Has the Huffington Post embraced science & closed the door on anti-vaccine quackery? We can hope. I wouldn’t place any bets on it though.

The Thinking Person’s Guide to Autism: The Book

19 Dec

I was fortunate to attend IMFAR (the International Meeting For Autism Research) this year. One big part of what made that experience valuable to me was the opportunity to spend time with Shannon Des Roches Rosa. Shannon’s writing can be found many places including online at Squdalicious and Blogher, and in print in the book My Baby Rides the Short Bus (a great interview about the book can be found on the KQED website).

At one point at IMFAR I posed a problem I saw in much of the online discussion I often am involved in: that while we can and do effectively counter much of the misinformation that permeates the autism-parent discussion, we don’t have much to offer people. She paused for a second, just long enough for me to realize that “we” didn’t mean her, and told me that this was the reason for The Thinking Person’s Guide to Autism and that the book was in the works.

The Thinking Person’s Guide to Autism has been a very successful website with excellent discussion for some time now, and now the book is available. You can buy it on Amazon. From CreateSpace you can read the short blurb:

Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autistics, autism parents, and autism professionals

Having read the first two chapters I agree with the statement above. It is a resource I wish I had when my kid was diagnosed. Sure, I’d have loved to have read this book before and been better prepared.

The book doesn’t pull punches. From the experiences of the adult autistics who wrote many essays to those of the parents,

From the introduction:

The Goal of The Thinking Person’s Guide to Autism is to help you fast-forward past society’s rampant autism fabrications and negativity by providing clear, thoughtfully presented, balanced, and referenced information

the essays form a guide. They are not telling people what to do, but providing good information to help one make decisions.

In the past Left Brain/Right Brain has reviewed some books in detail, chapter by chapter. I plan to do this with TTPGTA (The Thinking Person’s Guide to Autism).

Loving Lampposts: now on Netflix

19 Aug

Been putting of watching Loving Lamposts, Todd Drezner’s film? Well, it’s now available for streaming on Netflix (possibly for DVD delivery too, I can’t tell for sure).

I discussed the film a number of times when it was released (Loving lampposts, Loving Lampposts: synopsis and director’s statement, Loving Lampposts video clips, and, after I was provided with a review DVD, Loving Lampposts, a review.)

Here are a couple of clips from the film:

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

In his recent Huffington Post article,Labeling Autism And Creating Community, Mr. Drezner takes on some of the questions posed by the proposed DSMV criteria for autism. Specifically, will some people lose their autism labels, and what does this mean.

Reconsidering the Nature of Autism

8 Apr

Todd Drezner has a new piece up on the Huffington Post: Reconsidering the Nature of Autism. He starts out by quoting the forward to one of Jenny McCarthy’s books. The forward is by alternative medical practitioner Jerry Kartzinel.

Here is what Mr. Drezner wrote in his introduction:

“Autism … steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.” So wrote Dr. Jerry Kartzinel in the introduction to Jenny McCarthy’s bestselling “Louder Than Words.” No wonder, then, that the concept of neurodiversity– the idea that we should understand and accept autistic people as a group that thinks differently from the majority — has proven to be so controversial.

The quote takes me back. Back to when I was starting to look online for information about autism. I remember when Jenny McCarthy hit the scene. Kev responded here with his blogging. The blog might have been kevleitch.co.uk then, not LeftBrainRightBrain. I remember that Kev’s blog went down: the traffic was so high that he hit his bandwidth quota. I remember that he responded to the forward from Jerry Kartzinel. He responded with words and, a little later, with video:

I don’t bring this up just for some sort of nostalgia. But this reminds me of two major themes. First: words hurt. What Dr. Kartzinel wrote, and Jenny McCarthy published, hurt. It hurt a lot of people. It added to the stigma of autism and disability. Second: words can be powerful. Kev fought back, as did many others. How or if this was an influence on Todd Drezner, I can’t say. It influenced me as I still remember it.

We can’t sit back and let people stigmatize others, for whatever reason they may have. Kim Wombles shows that almost every day with her blog Countering. Bev did it with a humor and keen perspective on Asperger Square 8. Corina Becker is taking up the task with No Stereotypes Here. And this is just a few of the many voices, autistic and non, out there.

Having said this, I will bring up one message that I’ve felt needed to be countered for some time. Here is a screenshot of a page from the book “the Age of Autism” by Dan Olmsted and Mark Blaxill. Both write for the Age of Autism Blog (Dan Olmsted appears to be the proprietor). Mark Blaxill is a member of the organization SafeMinds. Both promote the idea of autism as vaccine injury and, more specifically, the failed mercury hypothesis. (click to enlarge)

To pull but one disturbing quote: “As one of the first parents to observe an autistic child, Muncie learned how well autism targets ‘those functions distinctly human’ “. Yes, I have spent quite a lot of time fighting bad science like the first part in that sentence: the idea that autism is new/the kids in Kanner’s study were the first autistics ever. But what about the second part: that autistics are missing or have impaired “distinctly human” functions? Yes, I’ve also responded to that sentiment in the past and I plan to continue to do so. And that is much more important than the fight against bad science.

Words hurt. Jerry Kartzinel’s words hurt. Dan Olmsted and Mark Blaxill’s words hurt. They hurt and they are wrong. Plain and simple.

Another phrase from the above paragraph: “autism brutally restricts the interests of the affected”. So say the team that has one interest: pushing mercury in vaccines as a cause of autism. A little ironic?

Reading their writing, I am reminded of one of Bev’s amazing videos:

Back to the paragraph from “The Age of Autism”. Dan, Mark: You don’t think autistics made tools, explored the globe, invented new technologies? The sad thing is, it seems like you don’t.

Yeah, a lot of kids, kids like mine, aren’t in the world explorer/inventor categories. And even kids like mine are still as human as you or I. They are not missing anything “distinctly human”.

Researchers track down autism rates across the globe

8 Apr

The Simons Foundation blog, SFARI, has always had a good quality of articles. Lately it appears to me that the frequency of articles has increased. One recent article hits a subject that has been a focus of mine for some time: prevalence estimates and how they vary by culture and geography. In Researchers track down autism rates across the globe Virginia Hughes talks to a number of researchers working on expanding autism prevalence studies to more countries. Outside of the US and the UK, autism prevalence studies are somewhat rare. Until fairly recently, prevalence estimates outside of the US and Europe were basically nonexistent.

Ms. Hughes starts with this introduction:

In urban areas of South Korea, some families of children with developmental delays will go to great lengths to avoid a diagnosis of chapae, or autism. They think of it as a genetic mark of shame on the entire family, and a major obstacle to all of their children’s chances of finding suitable spouses.

The stigma is so intense that many Korean clinicians intentionally misdiagnose these children with aechak changae, or reactive detachment disorder — social withdrawal that is caused by extreme parental abuse or neglect.

This won’t come as a surprise for those who have read Roy Richard Grinker’s Unstrange Minds, where Prof. Grinker explores how autism is viewed in various parts of the world, including South Korea.

Prof. Grinker is interviewed, as is his collaborator Dr. Young Shin Kim, and Dr. Eric Fombonne.

Autism prevelance work has been performed or is ongoing in Mexico, South Korea, Brazil, India, South Africa and Oman. Since autism isn’t diagnosed through a biological test, variations in culture can have a significant impact on the test methods.

Ms. Hughes notes:

Language and culture may also affect the way this research is carried out. For instance, the Korean language uses an extensive array of suffixes that denote the relationship between the speaker and the subject. South Korean children with autism have trouble using these social markers, but the Western-based standard tests of autism, such as the Autism Diagnostic Observation Schedule (ADOS), don’t test for this.

Similarly, Grinker points out, healthy children from non-Western cultures may display a trait that ADOS counts as a symptom of autism. In South Korea, for example, making eye contact with an adult is not socially appropriate.

“This is why it’s pretty useful to have [anthropologists] who can translate diagnostic instruments that were designed in one culture and used in another,” Grinker says.

Rather than cut and paste the entire article I will point you back to SFARI for the full piece. It is well worth reading.

Making Sense of Autistic Spectrum Disorders

5 Apr

There are so many “autism” books out there for parents new to the diagnosis. Unfortunately many are just not good. We’ve spent a lot of time here discussing the problems with books that promote “mommy instinct” or therapies untested for safety or efficacy. Warning parents off a book isn’t the same thing as giving them some idea of where to turn for good information. Recently I was loaned a book by friend and fellow blogger Liz Ditz (of the I Speak of Dreams blog): Making Sense of Autistic Spectrum Disorders by James Coplan.

I read the first chapter and a couple of bits here and there and came away thinking: this could be a good resource. I plan to go through the book in pieces over time, but I am willing to start recommending it already.

There are a few things I would probably word differently, and I certainly haven’t seen it all yet. It isn’t a quick read, and a new parent may not want to go through it from start to finish linearly. But there are good sections to jump to, refer back to and the like.

Disclosure: I’ve asked for a review copy so I can return this one to Liz.

Loving Lampposts, a review

4 Apr

Loving Lampposts is a new film about autism by filmmaker and autism parent Todd Drezner. You get a good idea of the direction of the movie from the subtitle–Loving Lampposts, living autistic. I “watched” the film. As in, it’s hard to find an hour and a half solid to watch something through. Instead I watched a little on TV and listened and watched what I could on my computer as I worked. I really wish I had blocked out the full hour and a half to watch it in one sitting as it is quite well done. I agree with Shannon Rosa in her review: this is a film I’ve waited for to fill many roles. It is a film that I wish I had available when we got the diagnosis for our kid. It is a film I’d like to recommend to people who ask about autism.

Todd Drezner narrates the film. He does a good job of using narration lightly. He mostly narrates to make the transitions between the segments of the film. In general, he lets the people–the autistics, the parents, the professionals–in the film present the various ideas.

The first part of the film introduces the ideas of autism as a medical condition and neurodiversity. The vaccine discussion does come up later in the film. It is great to see the vaccine discussion not as parents vs. a mainstream medical establishment. It will come as no surprise to readers here that many parents do not subscribe to the vaccine-injury model, and Mr. Drezner presents them in their own voices. Some of those parents featured in the film include Kristina Chew and Roy Richard Grinker.

The discussion of cure and vaccines needs to be addressed. But what makes the film really work is the time spent on autistics. Autistic kids and a good amount of time with autistic adults. Stephen Shore talks about his life and his work in education. Also featured autistics include Barbara Moran, Kassiane Sibley and Sharisa Kochmeister.

There are great segments with Lyndon and his mother Lila Howard. Lyndon was born in the early 1950′s, during the “childhood schizophrenia” and “refrigerator mother” era. He’s now living in his own apartment, with his mother still as his primary caregiver.

Dora Raymaker is also featured, communicating with AAC through her computer.

Director Todd Drezner is not heavy handed, but he dispels myths. Here are two of them: Neurodiversity is not all about “high functioning” autistic adults. Neurodiveristy advocates do not deny that autism is a disability.

I’ve never wanted to attend an autism-parent/biomed convention. But Loving Lampposts really makes me want to put into action my desire to attend Autcom or Auttreat. Loving Lampposts was partially filmed at Autcom 2007.

As I wrote above, I wish I had this film years ago. I wish I could have seen it. I wish I could have offered it to the many people who have asked questions about autism. I’ll certainly be telling my family and friends about this and offering it to people asking about autism.

Disclosure: I asked for and was provided with a copy of the DVD to screen. I am very grateful that this was made available to me, but I am not compensated in any way for purchases of the film. With that said: You can purchase the film from Amazon.com, or from the Loving Lampposts website. It isn’t available yet on Netflix, but you can put it in your queue and give them the idea that they should make it available.

Loving Lampposts video clips

1 Apr

Loving Lampposts is a new documentary film by filmaker and autism parent Todd Drezner. Here’s a blurb from their website to give you an idea about the film:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

I put it on my Netflix list (you can too: link) right after reading the review on The Thinking Person’s Guide to Autism and the interview with the director on Neurotribes. Netflix doesn’t carry it yet, but with luck I may have a copy soon. One can purchase a copy as well.

If you are interested in what Todd Drezner has to say, he has the first in a series of articles up on the Huffington Post: Learning to Embrace Autism.

For more on what the film is about, here are a series of video clips the produces have made available:

Opening sequence with director Todd Drezner introducing autism spectrum disorder through his son, Sam

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Understanding autism through “Rain Man” and as described by author of “Unstrange Minds” Roy Richard Grinker

Loving Lampposts Clip #2 from Cinema Libre Studio on Vimeo.

Sharisa Kochmeister, autistic adult with a genius level IQ, and her father, Jay – “I don’t have a disease. I have a disability that causes unease…”

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

Mothers Kristina Chew and Nadine Antonelli initially hoping to find a “fix” for their autistic children

Loving Lampposts Clip #4 from Cinema Libre Studio on Vimeo.

Simon Baron-Cohen, Director of the Autism Research Centre, explains definitions of autism and Asperger’s

Loving Lampposts Clip #5 from Cinema Libre Studio on Vimeo.

About the anti-childhood vaccination movement featuring actress and mother, Jenny McCarthy

Loving Lampposts Clip #6 from Cinema Libre Studio on Vimeo.

Blogger, mother, and activist Kristina Chew shares the joy of watching her son ride a bike

Loving Lampposts Clip #7 from Cinema Libre Studio on Vimeo.

Autistic adult, Dora Raymaker, using a computer to talk, explains how autism affects her ability to communicate

Loving Lampposts Clip #8 from Cinema Libre Studio on Vimeo.

Dr. Paul Offit discusses his involvement in the vaccine industry and the MMR vaccination

Loving Lampposts Clip #9 from Cinema Libre Studio on Vimeo.

Deadly Choices: How the Anti-Vaccine Movement Threatens Us All

4 Jan

I mentioned in a previous post that I was reading Deadly Choices and used it as the basis for a post on how much of a myth the idea of there being ‘mild’ diseases is.

I’ve (literally) just finished reading the book so I want to give it a review. I should be clear up front, I liked the book very much and I like Paul Offit too so you’re not going to find much negativity here.

The book is a clear and coherent look back at the roots of the modern anti-vaccine movement (mostly in the US but we get a sadly necessary large mention too), its leading proponents and figures. It also swings up to the modern day and looks at the contemporary anti-vaxxers such as Jenny McCarthy etc.

Sadly (from my point of view) it makes the role of modern day anti-vaccinationism clear: its mainly due to the confluence of vaccines and autism that has given rise to a politically motivated type of anti-vaxxer. To give examples we’re all familiar with its like when an out n out anti-vaxxer like the owner of the website whale.to became friends with the leaders of Generation Rescue that the initial overlap first occurred – first they borrowed material from each other then they become supporters of each other and now they follow the common goal of destroying the vaccine program in the West. That might sound a little over the top but its nonetheless true. Ask any anti-vaxxer what their goal is and that goal will be the eradication of vaccines.

Offit’s book is also a study of some of the incidents where vaccines _have_ been at fault and details how these rare occurrences are used to chronicle the side effects of vaccines and direct future safety testing. The first few chapters of the book make it clear just how important some of these tragic incidents have been to today’s safety testing. Another upcoming book that tackles this subject is Seth Monookin’s The Panic Virus and of course Offit’s own book The Cutter Incident details one such incident in great detail.

According to Offit himself:

I wrote this book for children; Deadly Choices is an attempt to stand up for them. A child’s vaccination decisions are made by his or her parents. If an adult chooses not to be vaccinated from Hepatitis B and she dies, that was her own choice to not be vaccinated. What bothers me is that children aren’t making that choice. Who represents the children?

And he’s absolutely right. In the same vein, whilst Deadly Choices is not an autism book per se, it should be the responsibility of the autism community to spread its message far and wide, partly because its the right thing to do and partly because its the modern day autism community that has spearheaded and led the contemporary anti-vaccine message. We have some wrongs to right.

I am Bonnie Offit!!

16 Nov

AoA have a hilariouslybizarre post up this morning.

Is Dr. Bonnie Offit masquerading on the web as an autism parent and prolific blogger named “Sullivan”?

And why do AoA think this?

The primary answer seems to be that they found a comment from Liz Ditz on Squidalicious blog that _seems_ (if you’re not too bothered about reading the context) to refer to Sullivan as ‘her’. In fact what Liz was doing was referring to the subject of the post she was commenting on – Holly Robinson Peete.

AoA’s next piece of evidence is that Bonnie Offit surfs the blogosphere late at night. Erm…so what?

Their third piece of evidence seems to be that Sullivan is a smart guy. This is undeniable. I’ve had the good fortune to chat to him via Skype and he is indeed one smart cookie. Is he a doctor of medicine as Bonnie Offit is? No. No he’s not.

Their fourth piece of evidence is that Sully defends Paul Offit. Well so what? I know of lots of bloggers, including myself, who defend Paul Offit.

Their fifth piece of evidence (why does this remind me of ploughing through Age of Autism the book) is that Sullivan appears to know Paul Offit. Again, so what? I’ll be frank, I’ve swapped emails with Paul Offit and charming man that he is, he’s always very friendly and courteous , going out of his way to be helpful and guess what – he gives proof copies of his books to people he think would be interested in reading them!! I have one myself. Dan Olmsted, Mark Blaxill et al also indulge in this practice. That takes care of another piece of ‘evidence’.

Yet another piece of evidence produced by AoA is that Sully goes to great lengths to clarify what Paul Offit earned from his vaccines. Let me give you a little lesson AoA – this is something called ‘clarity’ and it is coupled with something called ‘tenacity’. When you have these things, as Sullivan does, you are interested in the actual truth as opposed to the surface appearance.

Yet another piece of evidence (and we’re really scraping the barrel here) is that Sully didn’t discuss the suit against Paul Offit until the day it was dismissed, despite the fact that Orac had. Not really sure what to say about that one, except this is getting very silly indeed.

AoA closes this piece of hilarity with:

You know, I’m starting to hope this is Bonnie Offit, because if it isn’t we have one really, really troubled father on our hands. Get a life, father of a child with autism, Paul Offit is not going to help your child…unless Paul Offit is the father of your children, and then, once again, it all makes sense.

Which is a weird statement to make given that the author of this whole piece, JB Handley, said in an email to Sullivan:

…you are entitled to your own opinion, and I find your writing to be thought-provoking.

So on one hand Sully is a really, really troubled father and on the other JB Handley finds Sully thought provoking. Hmmm.

However, as I said, its plain to me that Sullivan is not Bonnie Offit for one clear and simple reason. I’ve spoke with HIM.

And there’s one other factoid AoA clearly missed. Sully can’t be Bonnie Offit because I am!!

Update:Orac claims he’s Bonnie Offit. Clearly this can’t be true because I AM!!!

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