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Books and Movies

16 Aug

In the process of moving from being self-hosted to being hosted by wordpress.com, we lost the list of books that Kev had compiled over the years. I’ve started rebuilding that list and will try to go through some new books in posts in the near future. The page Books and Movies is already up and will grow with time. Feel free to offer recommendations or to remind me of books that were on the previous list.

Great article at TPGA: Advice to Young Autistics: Stick Around and Become Awesome

8 Jul

The Thinking Person’s Guide to Autism (TPGA) has an article today by Nick Walker: Advice to Young Autistics: Stick Around and Become Awesome. Here’s the introduction:

So you’re a young Autistic person, and maybe you think you’re broken; maybe you think you’re doomed to a life of misery. You’re in pain, maybe depressed, maybe angry. Maybe you’re even considering suicide.

Sorry you’re going through that. I’ve been there myself, and it sucks.

But I survived. And although it took some time and involved some major struggles, I eventually ended up becoming a very happy adult with an awesome life where I spend much of my time doing things that I love — a life full of good friendships, good community, and those simple moments of joy, grace, kindness, and connection that make a life worthwhile. I’m glad I stuck around long enough to get here. The hard parts were worth it.

I hope I have you hooked and you will go to the TPGA site and read the rest.

By Matt Carey

TPGA: IMFAR 2012: An Update on the ASD DSM-5 Recommendations

19 May

There is much discussion on the DSM 5 at IMFAR. This includes talks from Sue Swedo at the stakeholder’s lunch and a formal (and highly attended) conference talk The Thinking Person’s Guide to Autism has four of their editors at the conference and has an article on the DSM 5 discussion.

IMFAR 2012: An Update on the ASD DSM-5 Recommendations

We spoke with Sue [Swedo] at length both at the IMFAR Stakeholder’s lunch, and after her IMFAR talk. Any errors or omissions in this summary of her talk are on TPGA. -SR

More at the TPGA site.

TPGA Welcomes Five New Affiliate Editors

30 Mar

The Thinking Person’s Guide to Autism has added five new editors.

They are:

Kerima Cevik
Rachel Cohen-Rottenberg
Rob Gross
Kassiane Sibley
Sandy Yim

There are brief bios for each on the TPGA website: TPGA Welcomes Five New Affiliate Editors

This looks to be an excellent addition to their team.

Who Decides Which Facts are True? Perhaps not “Dr. Bob”

27 Mar

Dr. Robert Sears (Dr. Bob) is one of the more well-known Defeat Autism Now (DAN) doctors. This is a group of alternative medical practitioners who “treat” autism with a number of untested (and, thus, unproven) methods such as supplements, chelation, hyperbaric oxygen therapy, and others.

As a DAN practitioner, it won’t surprise most readers here that Dr. Bob takes a different view of vaccines than the mainstream. Dr. Bob Sears has a book out on alternatives to the standard vaccine schedule, The Vaccine Book: Making the Right Decision for Your Child. This approach has not been without criticism (for example, The Problem With Dr Bob’s Alternative Vaccine Schedule).

Dr. Bob has been associated with an outbreak of measles in San Diego, California a few years back. In specific, that the “index patient”, the child who was infected abroad during a family trip, was a patient of his practice. Note that people did not say that the child spread the infection in his office. Instead, According to the radio show “This American Life” and a short article in his hometown newspaper, the Orange County Register and, later, Seth Mnookin‘s book, The Panic Virus, note that the child who imported measles into San Diego from Switzerland was a patient of Dr. Sears.

Dr. Sears has recently (as in the past few days) contested this idea that the “index patient” for the San Diego outbreak was seen in his clinic. Which, as I noted above, is not what was discussed in, for example, The Panic Virus. In a comment on the Huffington Post blogs, Dr. Sears wrote:

“I will set the record straight. I was NOT the pediatrician who saw the measles patient and let him sit in my office. As far as I know, that occured in a San Diego pediatrician’s office. I don’t know whose. I was not involved in that at all. I haven’t read Seth Minooken’s book, NOR have I ever even spoken with Seth. So I’ve no idea what he’s said about me in his book. I actually had no idea that any of you were even wondering about this. No one’s brought it to my attention before this. I heard something about some journalist writing a book about vaccines, but hadn’t bothered to read it”

This brings up the question posed by Seth Mnookin in his book, The Panic Virus: “Who Decides Which Facts are True”.

Well, Mr. Mnookin is providing us with information to decide for ourselves. Mr. Mnookin provided the links to “This American Life” and the Orange County Register. In addition, Mr. Mnookin has provided us with a brief discussion of the exchanges between Dr. Sears and himself. All this in his article, Bob Sears: Bald-faced liar, devious dissembler, or both?

As to whether Dr. Bob Sears has ever spoken with Seth (emphasized with an all caps “NOR” in Dr. Bob Sears’ comment on Huffpo), Mr. Mnookin provides readers with a link to audio from one of his interviews with Dr. Sears. Mr. Mnookin wrote:

Now, there are a number of odd things about Sears’s comment. First, he denies something that I’ve never accused him of—not in my book, not in an interview, not in a speech: letting a patient infected with measles sit in his office. Then, he misspells my name, which is either an illustration of how little he cares about getting things right or of his deviousness (or both)—because while I assume it’s true he’s never spoken to Seth Minooken, he most definitely has spoken to Seth Mnookin. You don’t need to take my word for it; as you can hear here, I actually taped the interview. That interview was just one part of a long series of back and forths I had with Sears and various staff members in his office. I think they’re revealing—and, in light of Sears’s claim that he’s never spoken to me (or someone whose name sounds an awful lot like mine), they’re worth discussing.

Readers can read what Mr. Mnookin felt was “worth discussing” in his article: Bob Sears: Bald-faced liar, devious dissembler, or both?

BMJ, Brian Deer file anti-SLAPP motion against Andrew Wakefield

11 Mar

About 2 months ago Andrew Wakefield filed a defamation lawsuit against the British Medical Journal, Brian Deer and Fiona Godlee for the series of three articles “The Secrets of the MMR Scare” and public comments made since. In particular, Mr. Wakefield took issue with statements about his research being fraudulent (and variations on that term like “fraudster”, “bullshit” etc.). Mr. Wakefield claimed that the facts presented by the BMJ articles were incorrect and based on information not available to him at the time he wrote his Lancet article.

Mr. Wakefield chose to file his defamation suit in Texas (his home state). This presented him immediately with two hurdles. First he has to show that the court has jurisdiction over primarily UK entities. Second he faced the possibility of an anti-SLAPP motion. SLAPP stands for “Strategic lawsuit against public participation“. Per Wikipedia:

A strategic lawsuit against public participation (SLAPP) is a lawsuit that is intended to censor, intimidate, and silence critics by burdening them with the cost of a legal defense until they abandon their criticism or opposition.

The typical SLAPP plaintiff does not normally expect to win the lawsuit. The plaintiff’s goals are accomplished if the defendant succumbs to fear, intimidation, mounting legal costs or simple exhaustion and abandons the criticism. A SLAPP may also intimidate others from participating in the debate. A SLAPP is often preceded by a legal threat. The difficulty, of course, is that plaintiffs do not present themselves to the Court admitting that their intent is to censor, intimidate or silence their critics. Hence, the difficulty in drafting SLAPP legislation, and in applying it, is to craft an approach which affords an early termination to invalid abusive suits, without denying a legitimate day in court to valid good faith claims.

Many states in the U.S. have enacted anti-SLAPP legislation. Texas enacted a law fairly recently and this motion could be the first major test of that law. I say “could” because of the first hurdle: jurisdiction. As Popehat has already noted, the plaintiffs in the anti-SLAPP motion “specially appear”. I.e. they keep the right to fight on jurisdictional grounds.

The motion and Mr. Deer’s supporting declaration can be found on Mr. Deer’s website. Mr. Deer’s declaration goes through the full history of his involvement with Mr. Wakefield’s research.

As Popehat notes, the motion appears quite strong. As is the case with legal motions, it covers multiple arguments. For example, they not only argue that the statements on their own are permissible speech, but they argue that the statements themselves are accurate.

Here is a section of the table-of-contents for the motion:

V. TEXAS’S NEW ANTI-SLAPP STATUTE APPLIES TO DR. WAKEFIELD’S CLAIMS.

VI. DR. WAKEFIELD’S CLAIMS FAIL BECAUSE HE CANNOT SHOW THAT THE CHALLENGED STATEMENTS ARE FALSE

A. Dr. Wakefield Must Prove that Defendants’ Statements Are Not Substantially True.
B. Dr. Wakefield Is Precluded from Re-litigating the GMC’s Findings, Which Establish the Substantial Truth of the Challenged Statements.
C. The Undisputed Evidence Also Establishes the Substantial Truth of the Challenged Statements.

1. Dr. Wakefield’s Misreporting and Falsification Permeated His Research.

2. Dr. Wakefield’s Undisclosed Conflicts of Interest.
3. Dr. Wakefield’s Review of the GP Records

VII DEFENDANTS’ STATEMENTS OF OPINION AND RHETORICAL HYPERBOLE ARE NOT ACTIONABLE.
A. Several of Defendants’ Statements, Including that Dr. Wakefield’s Research Must Have Been “Fraud,” Are Nonactionable Expressions of Opinion.
B. Defendants’ Expressions of Rhetorical Hyperbole and Colorful Language Are Not Actionable.

VIII DR. WAKEFIELD’S CLAIMS BASED ON BRIAN DEER’S WEBSITE PUBLICATIONS ARE BARRED BY THE STATUTE OF LIMITATIONS.
DR. WAKEFIELD IS A PUBLIC FIGURE, AND HE CANNOT SHOW ACTUAL MALICE.
A. Dr. Wakefield Is a Public Figure.
1. The “MMR Scare” Is a Public Controversy.
2. Dr. Wakefield Had More than a Trivial or Tangential Role in the
Scare.
3. Dr. Wakefield’s Claims Are Germane to His Participation in the
Controversy.
B. Defendants Did Not Act with Actual Malice.

1. Actual Malice Is an Exceedingly Difficult Standard to Satisfy.
2. The Evidence Here Precludes a Finding of Actual Malice.

Mr. Wakefield faces a number of burdens to overcome this motion. He must show that the statements made were more damaging that the truth. He must show that the statements are false–not just minor wording differences but that the “gist” of the truth is missing from the statements made. He must show that either he is not a public figure (very difficult for a doctor who has had a publicist for at least 10 years and has certainly put himself into the public sphere). He must show that Brian Deer, Fiona Godlee and the BMJ acted with actual malice.

He must present substantive evidence for each of these before he can go to trial. If he fails, he faces not only payment of reasonable legal fees and costs, but also the possibility of a penalty to deter future frivolous lawsuits. In that regard, the motion puts forth the history of Mr. Wakefield’s previous legal threats and lawsuits.

The most famous instance of Mr. Wakefield’s litigious history is his lawsuit against Brian Deer in 2004. Justice Eady made very clear statements on that:

[Dr. Wakefield] wished to use the existence of libel proceedings for public relations purposes, and to deter critics, while at the same time isolating himself from the ‘downside’ of such litigation, in having to answer a substantial defence of justification.

To put this in perspective–such a statement by the judge in Texas would almost certainly be followed by not only a dismissal of the case, but a financial judgement in favor of Mr. Deer, Ms. Godlee and the BMJ.

The motion makes it clear that Mr. Wakefield has faced negative commentary on his work and his character from many quarters in the past few years. From their introduction:

Two months ago, Dr. Andrew Wakefield was named by Time magazine as one of the “Great Science Frauds” of modern history. Last April, the New York Times described him as “one of the most reviled doctors of his generation.” In 2009, a Special Master presiding over vaccine litigation in the United States Court of Federal Claims recognized that Wakefield’s 1998 paper in The Lancet medical journal, which suggested a possible link between the lifesaving Measles, Mumps, and Rubella (“MMR”) vaccine and the development of autism in children, was considered a “scientific fraud.”

The Lancet has now fully retracted Wakefield’s paper, and its editor has state publicly that the paper was “utterly false” and that Wakefield “deceived the journal.” Wakefield’s home country’s medical board, the United Kingdom’s General Medical Council (“GMC”), convicted him in 2010 of multiple charges of “serious professional misconduct,” including “dishonesty” and “unethical conduct.” It further held that his misconduct had been so severe and extensive that the only punishment that would adequately protect the public from him was the permanent revocation of his medical license. As the New York Daily News put it, “Hippocrates would puke.”

As to specific instances of calling Mr. Wakefield’s work fraudulent, they quote multiple instances of the term being used. As noted above, one of the Special Masters in the Omnibus Autism Proceeding (vaccine court) called the work “scientific fraud”. Probably the most damaging instance for Mr. Wakefield are quotes from his own attorney in the General Medical Council (GMC) hearings who stated that some of the charges, if found proved, would amount to charges of fraud. Those charges were found proved.

There is definitely a movement amongst Mr. Wakefield’s supporters to recast his defamation suit as a retrial of not only his Fitness to Practice hearing before the GMC, but as a legal test of the validity of his MMR/autism hypothesis. Even just within the past couple of days Jenny McCarthy re-emerged in her role as a vocal Wakefield supporter with this (and other) erroneous arguments.

Courts are well aware of attempts for people to use defamation cases as a proxy for fighting other arguments. For example, readers might recall a recent defamation case where Barbara Loe Fisher (of the self-named National Vaccine Information Center) sued Dr. Paul Offit, writer Amy Wallace and Conde Nast publications for two words in an article: “she lies”. In the decision dismissing the defamation suit the judge noted:

Not only does Plaintiff’s claim of the statement’s falsity invite an open ended inquiry into Plaintiff’s veracity, it also threatens to ensnare the Court in the thorny and extremely contentious debate over the perceived risks of certain vaccines….and, at the bottom, which side has the truth on its side. This is hardly the sort of issue which would be subject to verification based on a core of “objective evidence”

and

Courts have a justifiable reticence about venturing into a thicket of scientific debate, especially in the defamation context

However, one must note that Mr. Wakefield’s defamation suit does *not* involve the issues of his research conclusions/findings (or non-findings as they have been retracted from the public sphere). The question put forth by Mr. Wakefield was whether statements such as “fraud”, “fraudster”, “determined cheat” are actionable defamation and whether these are based on allegedly misrepresented details from the research–such as diagnoses of the children and when symptoms appeared. Mr. Deer shows in his declaration that the facts presented in the BMJ studies are accurate.

On the “weight of evidence” front, consider this: Mr. Wakefield submitted a 17 page defamation claim. The defendants have responded with a 53 page anti-SLAPP motion and 5 declarations. The declarations include one from Mr. Deer with 101 pages and 104 exhibits. Where Mr. Wakefield is using a neighbor as his attorney, one who is not a specialist in health, media or defamation cases, the BMJ team are using a top Texas law firm and a total of seven attorneys. The lead attorney is listed as having experience with healthcare and publishers:

Tom has a wide range of experience in state and federal appeals and trials. His experience includes commercial, intellectual property, and healthcare litigation, and class actions. He has represented publishers and broadcasters in all aspects of media litigation throughout his career.

the second attorney listed has direct experience on defamation:

Marc’s practice focuses on media and privacy law, class actions, and general commercial litigation. His media law experience includes representing publishers in litigation involving claims for defamation, invasion of privacy, misappropriation, copyright, and related causes of action. In addition, he has defended companies in consumer class actions across the country relating to advertising and digital privacy. He regularly provides advice regarding website terms of service, arbitration agreements, and privacy law.

According to the BMJ’s motion, ” To avoid dismissal, the plaintiff [Mr. Wakefield] must submit “clear and specific evidence” to support each essential element of his claims.”

I suspect that Mr. Wakefield will have a meeting with his attorney very soon to discuss strategy. They are outclassed on the facts of the case, on the manpower and expertise of the attorneys and the credibility of the witnesses. They will discuss “each essential element of his claims” and how they stack up against the evidence presented. One might suspect that Mr. Wakefield’s attorney was unaware of how shaky their position was at the start, getting his facts from Mr. Wakefield. They now know, through hundreds of pages of arguments and evidence, how the defense can answer the “essential claims”.

If they can dismiss before the jurisdiction question is addressed and avoid the anti-SLAPP motion, they might be well advised to do so. The “reasonable costs” the BMJ are incurring are sure to be sizable. And the litigious history of Mr. Wakefield will surely play into a determination of whether to impose penalties on top of those.

From where I sit, Mr. Wakefield just doesn’t have the facts on his side. Nor does he have the law on his side. The jurisdiction question may be a blessing in disguise for Mr. Wakefield: giving him the opportunity to bow out before the anti-SLAPP motion goes into effect.

Vote for The Thinking Person’s Guide to Autism as best new special needs parenting book

26 Feb

Have you read The Thinking Person’s Guide to Autism? If so, consider a vote for The Thinking Person’s Guide To Autism as best new special needs parenting book. This poll is being held at SpecialChildren.about.com.

From about.com:

Five new special-needs parenting books have been selected to vie for a 2012 About.com Readers’ Choice Award, based on your nominations

And you can vote every day (for real):

You can vote once a day every day between now and March 21. Winners will be announced on March 30

The Panic Virus: now in paperback

9 Feb

The Panic Virus came out just over a year ago. We discussed it on Left Brain/Right Brain (here and here). As one who has spent a great deal of time reading and writing about the autism/vaccine discussion, I found the book to be extremely well researched and very well written.

The author, Seth Mnookin, now teaches science writing at the Massachusetts Institute of Technology (MIT) and writes for the PLoS blogs.

Here is a blurb on the book:

WHO DECIDES WHICH FACTS ARE TRUE?

In 1998 Andrew Wakefield, a British gastroenterologist with a history of self-promotion, published a paper with a shocking allegation: the measles-mumps-rubella vaccine might cause autism. The media seized hold of the story and, in the process, helped to launch one of the most devastating health scares ever. In the years to come Wakefield would be revealed as a profiteer in league with class-action lawyers, and he would eventually lose his medical license. Meanwhile one study after another failed to find any link between childhood vaccines and autism.

Yet the myth that vaccines somehow cause developmental disorders lives on. Despite the lack of corroborating evidence, it has been popularized by media personalities such as Oprah Winfrey and Jenny McCarthy and legitimized by journalists who claim that they are just being fair to “both sides” of an issue about which there is little debate. Meanwhile millions of dollars have been diverted from potential breakthroughs in autism research, families have spent their savings on ineffective “miracle cures,” and declining vaccination rates have led to outbreaks of deadly illnesses like Hib, measles, and whooping cough. Most tragic of all is the increasing number of children dying from vaccine-preventable diseases.

In The Panic Virus Seth Mnookin draws on interviews with parents, public-health advocates, scientists, and anti-vaccine activists to tackle a fundamental question: How do we decide what the truth is? The fascinating answer helps explain everything from the persistence of conspiracy theories about 9/11 to the appeal of talk-show hosts who demand that President Obama “prove” he was born in America.

The Panic Virus is a riveting and sometimes heart-breaking medical detective story that explores the limits of rational thought. It is the ultimate cautionary tale for our time.

If you were waiting for paperback to save some money, here’s the Amazon.com link. Other booksellers will have it too.

Thinking Person’s Guide to Autism, the first two chapters

12 Jan

When I first wrote about the Thinking Person’s Guide to Autism (TPGA) I mentioned I planned a series of articles. Multi-part discussions of books have been done before on Left Brain/Right Brain but usually for books that are, shall we say, less helpful than TPGA.

TPGA is a series of essays. Some are as short as two pages. Some up to 5 pages and maybe even more. The essays are arranged in chapters like “After the diagnosis: first steps” and “Autism–Adult Voices” and “Autism–Parent Voices”. This approach makes TPGA exactly the sort of book I find useful and I wish I had access to when my kid was first diagnosed. I love books. I love to read. But my approach to reading has had to change. In the past I’d read Robert K. Massie’s 928 page Peter the Great: His Life and World more than once. That was before kids. Kids, any kids, change your life in many ways. For those who find that they can still read lengthy books, you have my respect. I can’t. Being able to grab 5 or 10 minute to read an essay is more my usual approach these days. With TPGA you are also not stuck reading the book front to back. Want to read about “School and Education Issues”? Jump to that chapter. Want to read about “Therapies and Service Providers”? Flip to an essay in that chapter.

The introduction makes clear the scope and goals for the book.

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. We also want you to understand that autism awareness and acceptance are not merely noble but also necessary attitudes–and are separate matters from the autistic and other autism communities’ never-ending fights for medical, legal, social, and educational accommodation.

The first two chapters in TPGA are “After the Autism Diagnosis: First Steps” and “Practical Advice for Autism Parents”. Some essays can be found online and will give you an idea of the book. From the “After the Autism Diagnosis” chapter, here are a couple examples:

Squillo’sadvice in “What Now? Ten Tips for Families with a New Autism Diagnosis” is right on target. Here are some example topics: “Take a few days (at least) before making any important decisions” and “Keep a record of every interaction you have with schools, therapists, doctors, etc. regarding your child, even if it’s just a casual discussion in a hallway. Make copies of every questionnaire you fill out.”

Emily Willingham’s How Do People React When They Learn Your Child Has Special Needs? is likewise excellent.

Practical Advice for Autism Parents includes essays “Autism: Feeding Issues and Picky Eaters” by Judy McCrary Koeppen and Does Your Child With Autism Have a Daily Record? by Shannon Des Roches Rosa.

These are just examples but they make the point: there is a lot of information which is extremely valuable to parents who are trying to quickly come up to speed on subjects they probably have little experience with.

Also included in the “First Steps” chapter are two essays I would like to highlight. First is “Identifying and Avoiding Autism Cults” by Shannon Rosa. She speaks from personal experience for many of her points:

Families of children with new autism diagnoses can avoid cultish mistakes like ours if enough veteran parents reach out to them, and encourage them to choose logic over hype. We can help parents of newly diagnosed children with autism make careful choices and maximize limited resources. We can prevent them from taking their kids on expensive and emotionally-propelled journeys to nowhere.

Another excellent essay is “What Is Neurodiversity” by Mike Stanton. Mr. Stanton is one of those people I have never met but for whom I have an enormous respect. Mr. Stanton brings not only his views as a parent to the question, but some input from his child as well. “What is Neurodiversity” is an essay that could help a lot of people who have misconceptions about the topic as well as people new to the subject. Not to steal his thunder, but in case you don’t take the time to read the essay here is Mr. Stanton’s concluding paragraph:

I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.

My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.

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.

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