Tag Archives: autism spectrum disorder

Reporter’s investigation exposes inefficient charity

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In the Minneapolis Star Tribune, Jane Friedmann used simple tax documents and a local woman’s complaint to show that most of the money raised by the Austim Spectrum Disorder Foundation goes toward sustaining the foundation’s fundraising, not toward families living with autism. It’s a brief, effective piece of reporting of the sort that can and should be localized more often. For the record, here are the numbers Friedmann got from the return.

The charitable group pulled in $1.2 million in 2009, according to its IRS filing, but the charity listed a negative balance of $29,679 at the end of the year. It listed three employees and 89,128 “volunteers” …

The group hired two companies to raise funds for ASDF in 2009, but neither did much to help the cause. Ohio-based Infocision kept all $876,832 it raised, while Missouri-based Precision Performance Marketing kept all but $37,842 of the $203,227 it raised.

The tax form reveals the group held no “structured, formal meetings” in 2009. It spent $313,751 on “materials and fulfillment” and $120,241 on postage.

She also called local and national autism charities for their perspective on the dubious foundation, then included a few paragraphs which helped readers make more informed choices when doling out charitable contributions.

To investigate charitable organizations in your area, find out how to to understand an IRS 990 form, the tax return that nonprofit organizations file. It tells you the organization’s revenues and expenses, and its assets and liabilities. You can see whether or not it is making a profit, and how its fund balance, or net assets, has changed over the past year.

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

Comments invited on latest draft of DSM

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A new version of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders has come out every decade or so (it varies widely) since 1952. dsm-5It hasn’t substantially changed since 1994, but the next revision is slated to come out in 2013. It’s a pretty big event, as the book’s diagnostic criteria are used around the world to determine who is diagnosed with mental disorders.

With the release of the new version, lines may shift and folks who were diagnosed with mental disorders may find themselves “undiagnosed.” Others will have labels changed and gain labels they didn’t have before.

The latest draft proposal of the May 2013 revisions, upon which public comment will be accepted until April 20, 2010, was posted on Feb. 9. APA workgroups will review the comments and begin trials soon after. Benedict Carey rounded up and evaluated some of the biggest proposed changes for The New York Times. In addition to bipolar disorders in children and autism spectrum disorders, Carey discusses the sheer significance of the changes.

“Anything you put in that book, any little change you make, has huge implications not only for psychiatry but for pharmaceutical marketing, research, for the legal system, for who’s considered to be normal or not, for who’s considered disabled,” said Dr. Michael First, a professor of psychiatry at Columbia University who edited the fourth edition of the manual but is not involved in the fifth.

“And it has huge implications for stigma,” Dr. First continued, “because the more disorders you put in, the more people get labels, and the higher the risk that some get inappropriate treatment.”

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

Parikh examines media’s role in vaccine-autism link

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In his latest dispatch, Salon.com contributor and pediatrician Rahul Parikih describes the media as the willing enablers of the decade of hysteria brought about by what he describes as “Dr. Andrew Wakefield’s now infamous study linking the MMR vaccine to autism.” Parikh starts by describing exactly how Wakefield artfully manipulated the media from the beginning:

The anti-vaccine hysteria, after all, began like so many other big stories: with a press conference. That’s where Andrew Wakefield first staked his claim that the MMR vaccine caused autism, according to Paul Offit’s book, “Autism’s False Prophets.” Wakefield wasn’t flanked by doctors or hospital officials but by P.R. folks he had hired himself. “One case of [autism] is too many,” he said. “It’s a moral issue for me, and I can’t support the continued use of [the MMR vaccine] until this issue has been resolved.”

The problem, of course, is that a news conference loads a gun that the media usually pulls the trigger on: Headlines like “Ban Three-in-One Jab, Doctors Urge” started rolling off the presses. While measles made a tragic resurgence, few reporters attempted to scrutinize Wakefield or his audacious claim.

Finger successfully pointed, Parikh then goes on to analyze, with the help of AHCJ member Gary Schwitzer, exactly how the media was duped. He finds that it comes down to the fact that science is pretty complicated stuff, while the news cycle is not.

Frankly, progress in science and medicine occurs much more slowly than the news cycle can tolerate. “Science,” says Schwitzer, “is like a slow winding stream. It has ebbs and flows, and twists and changes in its path that, if you don’t follow, can fool you. But too many reporters, unfortunately, like to dip their toe in the water, run back and report about it without following that river to where it leads.”

Parikh also blames the reporters’ technique of adding “balance” to a story by including opposing opinions that may come from discredited fringe elements, but adds that it’s not entirely the media’s fault.

The Lancet, one of the world’s most well-known medical publications, played an enormous role here, showing us how medical journals are at risk for their own kinds of malpractice. Offit’s “False Prophets” details how Richard Horton, then the journal’s editor in chief, seemed enamored of the notion of publishing something muckraking. As Offit writes, “By ignoring the criticisms of several reviewers, the warnings of an accompanying editorial, Wakefield’s history of holding press conferences, a British press primed for controversy, and a public distrustful of public health officials, Richard Horton allowed the public to question the safety of a vaccine based on flimsy, irreproducible data. The loss of the public trust that followed was entirely predictable.”

Parikh ends his piece on a positive note, praising Brian Deer’s investigations into Wakefield’s research in The Sunday Times (of London).

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

CDC: Nearly 1 percent of U.S. kids have autism

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An average of one in 110 children have an autism spectrum disorder, according to a new study of the health and education records of 8 percent of 8-year-old children in the United States. In its release, the CDC says “These results reflect data collected in multiple communities throughout the U.S. from 2006 showing an estimated prevalence of ASDs to be about one percent of 8-year-olds in the U.S.”

The study, from the CDC‘s Autism and Developmental Disabilities Monitoring Network, looked at the records of 307,790 children in 11 study sites and identified 2,757 with an autism spectrum disorder. ASD prevalence was higher in boys than in girls and varied by race and ethnicity. The study also found that the overall prevalence of ASD has increased since earlier studies.

“These results indicate an increased prevalence of identified ASDs among U.S. children aged 8 years and underscore the need to regard ASDs as an urgent public health concern.” In the report, the CDC acknowledges the need to “understand how complex genetic and environmental factors interact to result in the symptoms which make up the autism spectrum.”

The CDC reports that, based on its examination of the records, most children with an ASD are getting special education services in the public schools, though not all were categorized as having an ASD. Other reasons for them receiving special education included specific learning disabilities, speech and language impairments, other health impairments and intellectual disabilities.

Interestingly, the Age of Autism blog reported the news from this study as early as Wednesday, despite the CDC’s embargo that didn’t lift until noon Eastern time on Friday, bringing to mind earlier questions about embargoes. More about that here.

Media briefing

The CDC is having a telephone-only briefing with Catherine Rice, Ph.D., a behavioral health scientist with the National Center on Birth Defects and Developmental Disabilities, to discuss the data at noon Eastern time. The briefing will be available via listen-only audio web site. The CDC will make a transcript of the briefing available on its Web site.

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

Autism news raises question: When is an embargo not an embargo?

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Are embargoes yet another quaint tradition that, like so many before it, has been pushed into obsolescence by the weight of the Internet? Do so many people have access to so much information they can share so easily that artificial restrictions on publication are meaningless?

Consider: In a Friday press conference, the Department of Health and Human Services discussed, under embargo, highly newsworthy data indicating a much higher than expected prevalence of autism in the United States. HHS didn’t mention, however, that in an earlier call it had already given the most newsworthy part of that information to members of the “autism community,” and had not restricted them from publishing the info. The incident raises serious questions about giving special interests privileged access to data at the expense of major media outlets, as well as the validity of embargoes in an era of increasing media fluidity.

Routine embargo?

Friday, at 3 p.m., HHS held a press conference announcing (among other things) that according to a CDC study, the prevalence of autism spectrum disorders, previously thought to be about 1 in every 150 children, is actually closer to 1 in every 100 children. This news, big enough that it led Monday’s health coverage, was embargoed until Monday because it reached conclusions similar to Health Resources and Services Administration (HRSA) findings that would be published in the journal Pediatrics that day.

There is some confusion as to where the embargo originated, as a Pediatrics representative said the journal only enforced an embargo of the HRSA study, and that anybody could have published the results of the CDC study. We are still awaiting a CDC response and more information from AAP, but have talked to representatives of the National Institute of Mental Health (NIMH) and this much, at least, is clear: As applied, the embargo covered both studies and every bit of data released to journalists. It was not, however, applied to information about the CDC study released in the autism community call.

“Both the CDC overview and the HRSA study were embargoed, because the subject nature was obviously so similar,” NIMH spokesman Jim McElroy said. “It just wouldn’t be appropriate to not have the CDC following the same set of guidelines as the HRSA study as it relates to the embargo.”

Special access for special interests

The 2 p.m. autism community call, a hastily organized affair for which invitations went out just hours beforehand, featured a brief appearance by HHS Secretary Kathleen Sebelius and gave autism advocates a broad overview of the CDC study, McElroy said. Because few specifics were discussed, the study’s broad conclusion (that the prevalence of autism spectrum disorders was now thought to be nearer to 1 in 100 children) was not under embargo.

McElroy again:

“The embargo was not in place for the advocacy groups but that’s why it was a far more general overview approach on the part of NIMH, HRSA and CDC… whereas with media it was clearly understood that an embargo was in place so media had the opportunity to ask questions.”

“The advocacy groups are very different by nature.. from media outlets whose job is to disseminate information. It’s two very different audiences and that’s why the embargo certainly is in place.”

In other words, the autism community got less information, but they were allowed to do as they pleased with what they got. The media, on the other hand, got much more information, but were not allowed to publish any of it, not even that part which had been given to the autism community without restrictions.

Autism advocates run with the news

Those on the “autism community” call wasted no time in running with the info they’d learned. For example, Dan Olmsted immediately posted the key stat on Age of Autism, and David Kirby posted a more thorough breakdown on Age of Autism and The Huffington Post soon after. About.com also posted the data (with a reference to the Pediatrics article, even), though it seems to have been taken down since (It’s still indexed in Google news).

Adventures in Autism blogger Ginger Taylor joined the call as well; her Friday post reveals a few key facts about the discussion.

“The conference call was not announced to the press or public, but merely in an e-mail sent out at 9 a.m. inviting around 50 people in the autism community (almost exclusively friendly to the administration) to the 2 p.m. call with a ‘sorry for the short notice,'” Taylor wrote.

Journal doesn’t budge

Meanwhile, Pediatrics didn’t drop the embargo. In a brief call Tuesday morning Susan Martin, American Academy of Pediatrics’ director of media relations, said that stories like the Age of Autism and Huffington Post pieces hadn’t broken Pediatrics‘ embargo because they only reported on the similar study to be published by the CDC, and not specifically on the journal’s embargoed article, “Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007.” Martin did acknowledge that About.com had broken the embargo.

Readers take “tardy” media to task

The comments on Kirby’s Huffington Post entry show just how much of a debacle the embargo was for major media outlets. Readers didn’t understand the media’s hands were tied, they just knew that major outlets weren’t reporting on what looked like big news. Here are the most telling entries:

“Thanks to HuffPo for covering the autism issues that are being ignored by so many.”
–Theresa Conrick (Oct. 4)

“I sent this link to all TV news stations in our viewing area,both newspapers and the most popular Newstalk..­…silence­.”
–KFuller (Oct. 4)

“Stakeholders are just crying this weekend that no news source picked up this story. Thank you from the bottom of my heart Huffington Post and David Kirby.”
–TannersDad (Oct. 4)

The fallout: Do embargoes work anymore?

In the case of the bungled HHS autism release, mainstream outlets with explicit standards and institutional policies were hamstrung while less-established outlets nimbly skipped out front of a major story. It’s a somewhat unique situation that underscores the growing weakness of the embargo process.

Do embargoes work when they don’t apply to everyone equally? What about when they’re not followed by everyone? Is it “good enough” to keep mainstream media off the news while it multiplies with impunity throughout the blogosphere?

A related consideration: How big must an embargo-breaker be before everyone else follows suit? About.com, for example, gets more American traffic than any media outlet but CNN, ESPN and The New York Times and is the 27th most popular site among American Web users. It’s even owned by The New York Times Company, though the independently contracted “guide” who posted the news wasn’t under the control of the Times‘ editorial staff, of course. Despite all that, About.com still wasn’t considered influential enough to have killed the embargo.

Everybody needs to be under the same rules

AHCJ president and ProPublica senior reporter Charles Ornstein said that “If they’re going to be sharing information, it should be shared with the premise that everybody’s under the same rules.”

“I think it’s unfair to hold an embargoed briefing for the media and a non-embargoed briefing for advocates,” Ornstein said. “In a way, I think this punishes the media for abiding by embargoes in an era where information is easily shared by blog posts and by Twitter. When information enters the public domain, embargoes should be lifted.”

“While many people believe that embargoes play a vital role, events like this should cause us to make sure they’re fair to the media, and, even more than that, ask whether they help or hinder the process of conveying information to our readers, viewers and listeners,” Ornstein said.

UPDATE: Pediatrics explains why they didn’t lift embargo

Having made clear that the organization’s embargo only extended to the HRSA study, and not the CDC study discussed on the autism community call, the AAP’s Susan Martin provided AHCJ with the following statement:

The American Academy of Pediatrics (AAP) was notified of an embargo break by About.com on Saturday, Oct. 3, by a journalist for another news organization. The AAP evaluates embargo breaks on a case-by-case basis. In the About.com case, the AAP denied a request to lift the embargo early. Lifting the embargo over the weekend would have only added to the confusion, especially as the About.com post was removed as soon as the reporter learned she had broken the embargo, and many journalists had scheduled their news reports on the study to run Monday, Oct. 5.

In a similar vein, the just-distributed Pediatrics‘ media mailing for the Oct. 12 issue contained an “Editor’s Note” laying out the terms of AAP embargoes and reminding journalists of the sanctions the academy can impose upon outlets who violate those guidelines. The note also reminds folks that “Any decision to lift an embargo early is at the sole discretion of the AAP.”

UPDATE: CDC says no numbers were given to advocates

CDC spokeswoman Artealia Gilliard told AHCJ on Tuesday afternoon that everything in the 3 p.m. press call was under embargo, while nothing that would have been covered by that embargo was mentioned in the earlier call with the autism community. In particular, Gilliard said, no specific prevalence rate numbers were given out on the call.

“We basically said ‘On Monday, two studies will come out. They will update the prevalence estimate we previously had.’ … It didn’t actually have any of the information that was embargoed.”

Gilliard, who was on both calls, specified further: “I know they didn’t put out numbers in the advocacy call. I know we didn’t say 1 in 100. What we’ve been saying is ‘approximately 1 percent of children.'”

The difference between “1 in 100” and “approximately 1 percent” is up for debate, but via e-mail, Adventures in Autism blogger Ginger Taylor outlined exactly how she and other autism-community bloggers were able to report the numbers without sitting in on the embargoed call: They’ve known them for a while.

Taylor first noted rumors of the new rate in a July blog post, David Kirby confirmed the rate and published conclusions of both the HRSA and CDC studies on the Huffington Post in August, and Tina Cruz noticed relevant changes to the CDC site late last month. So, even if the phrase “1 in 100” was never uttered, those in the know were quick to connect the dots. Kirby confirmed this via e-mail, here’s an excerpt:

According to my notes for the community call, this is what Dr. Insel said:
“Preliminary analyses indicate an increase in estimated prevalence, to around 1% of children affected.”
1%, obviously, is 1 in 100.

Cruz also notes in the comments on this post that she noticed changes to the numbers on the CDC’s Web site.

So, while the cat may already have been out of the bag, the CDC did not release embargoed information on the autism call because, Gilliard said, “There’s no such thing as embargo with the general public. The only people who respect embargoes are journalists.”

In the autism advocate call, Gilliard said the CDC carefully walked the line between respecting Pediatrics‘ embargo and alerting parents and advocates to the upcoming changes as soon as possible.

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.