Tag Archives: autism

Delving into the many mysteries of autism #ahcj13

Katie McCrimmon

About Katie McCrimmon

Katie Kerwin McCrimmon is a senior writer for Health News Colorado. She attended Health Journalism 2015 on an AHCJ-Colorado Health Journalism Fellowship, which is supported by the Colorado Health Foundation.

Don’t say the word “cure.”

A much-discussed study found that some children who have been diagnosed with autism spectrum disorders can outgrow them. That news has spurred hope among parents desperate for cures and, simultaneously, fears among some on the spectrum who embrace their “quirkiness” and don’t want a fix, thank you very much.

A panel of experts said Friday at Health Journalism 2013 that the causes of autism spectrum disorders remain mysterious and that questions remain about how to minimize the deficits in speech, social behavior and cognition seen in those on the spectrum.

The three experts all agreed that new higher estimates from the CDC that one in 88 children may have autism could be related to increased diagnosis and earlier detection, not just to an increase in cases. They said babies as young as six months can exhibit signs that they might be on the spectrum and that clinicians are diagnosing children who have just turned a year old. Continue reading

Reporter’s investigation exposes inefficient charity

Andrew Van Dam

About Andrew Van Dam

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, and he has blogged for Covering Health ever since.

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.

Online comments lead to BMJ’s disclosure of ‘competing interests’

Andrew Van Dam

About Andrew Van Dam

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, and he has blogged for Covering Health ever since.

In BMJ, Bob Roehr wrote about a report published by German researchers in the Canadian Medical Association Journal describing an apparent tendency for journals that accept pharmaceutical advertising to publish more positive drug-related articles than those that depend on subscription dollars to pay the bills. The study and the Roehr’s summary are good reading in their own right, but the comment section is where things really get interesting.

There, Age of Autism UK editor John Stone points to a commentary penned by the Alliance for Human Research Protection’s Vera Hassner Sharav and draws into question BMJ‘s sources of funding. His main focus is the tension between that publication’s Andrew Wakefield investigations and its receipt of money from an arm of Merck.

Sharav’s language is somewhat incendiary, but it’s BMJ editor Fiona Godlee’s response to her commentary (and Stone’s post) that push the whole thing into the realm of the remarkable. Godlee weighs in on everything right there in the comment thread, admitting that BMJ had not disclosed those conflicts of interest in the Wakefield stories simply “because it didn’t occur to us to do so,” given that it was a story focused on research fraud rather than upon vaccines and medicine.

Although Vera’s claims may seem far fetched on this occasion, she is right that we should have declared the BMJ Group’s income from Merck as a competing interest to the editorial (and the two editor’s choice articles) that accompanied Brian Deer’s series on the Secrets of the MMR scare. We should also, as you say, have declared the group’s income from GSK as a competing interest in relation to these articles. We will publish clarifications.

The whole chain of events is a promising sign that increased interactivity in online publications may lead to increased transparency, and it’s well worth reading, at the very least, all of Roehr’s story and the comments that follow it. All the key bits are there.

Whelan: Will HuffPo ruin AOL’s health site?

Pia Christensen

About Pia Christensen

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.

In the wake of AOL’s acquisition of the Huffington Post, Forbes.com’s David Whelan has taken the time to ask the $315 million health journalism question: What will happen to AOL’s decent health offerings when what he calls HuffPo’s trademark “medical freak show” leap on board?

As fellow Rahul Parikh fans will no doubt be aware, Ariana Huffington’s Post has long been a haven for those who share her non-evidence-based medical beliefs, but to recap, here’s Whelan’s biting comparison of the two sites:

AOL Health is a helpful site with tools for losing weight, Q&A sessions with Harvard Med professors, and a Mayo Clinic-esque databank of ailments and symptoms. It has its share of sensational headlines, overplaying stories on sex and diets. But that’s only a misdemeanor in the world of health journalism.

What’s always been closer to a journalistic felony is the way that the Huffington Post’s health coverage promotes pseudoscience, conspiracy theories and dubious remedies. Rahul Parikh, a pediatrician in the Bay Area who writes for Salon, has done some the best work I’ve seen exposing the looniness. Some examples from his survey: one blogger thinks swine flu should be treated with enemas, another promotes “distance healing”, and comedian Jim Carrey spreads the harmful theory that vaccines cause autism.

Since posting, Whelan received a pointed reply from HuffPo’s senior health editor, who says the site’s days on the fringe are now in the rear-view mirror:

UPDATE: The Huffington Post’s Senior Health Editor, Alana B. Elias Kornfeld, called to say that health articles are vetted by a Medical Review Board: “This has been true since HuffPost Health launched in Fall 2010 as a vertical separate from HuffPost Living where wellness coverage appeared in the past. As such, the acupuncturist referenced in Mr. Parikh’s 2009 Salon article is not the Health editor. Myself and Associate Health Editor, Meghan Neal, are both trained journalists.”

Matthew Herper, also of Forbes, follows up by pointing out that nothing seems to have changed. Today the Post has published a piece written by David Kirby that asserts people believe in a link between autism and vaccines for a reason and thus the debate won’t go away. Part of Kirby’s argument:

I know that many people will say the vaccine issue has been thoroughly investigated and debunked. I honestly wish that were the case, but it simply is not true. All of the “vaccine-autism” studies you hear about investigated just one childhood vaccine out of 14 (MMR), or one vaccine ingredient out of dozens (thimerosal). That is like announcing that air pollution does not cause lung cancer because you looked at carbon monoxide, alone, and hydrogen sulfide, alone, and found no link.

All of the pieces mentioned here are rich with links to other interesting reading about the subject so we encourage readers to explore the subject.

New health-related state laws for 2011

Andrew Van Dam

About Andrew Van Dam

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, and he has blogged for Covering Health ever since.

Many thanks to Melissa Preddy for pointing out, in a post on the Reynolds Center’s businessjournalism.org, the National Conference of State Legislatures’ roundup of new laws that have already go into effect in 2011, or will soon. It’s a national list loaded with localization-ready ideas and issues that should be surfacing throughout the year. Hot-button topics include expanding medical coverage and several nutrition-related laws.

Here are a few highlights, taken directly from the NCSL’s list.

Connecticut will soon be requiring health insurance policies that cover anticancer medications to cover the oral drugs at least as favorably as it does the IV ones. The law prohibits insurers from reclassifying anticancer medications or increasing the patient’s out-of-pocket costs as a way to comply.

A new Missouri law requires all group health benefit plans to cover the diagnosis and treatment of autism spectrum disorders. Coverage is limited to medically necessary treatment ordered by the insured’s treating physician. The law also requires the Department of Insurance and other institutions to submit a report to the legislature regarding the implementation of this coverage, including specified costs.

California became the first, on Jan. 1, 2010, to prohibit oil, shortening or margarine containing artificial trans fats in restaurants and other food facilities. Beginning Jan 1, 2011, the original law will extend to other foods containing artificial trans fats, primarily baked goods.

Retailers in Minnesota will now be banned from selling cups and bottles intended for children age 3 or younger that contain bisphenol A (BPA). These same restrictions went into effect for in-state manufacturers and wholesalers on Jan. 1, 2010.

California lawmakers have also enacted a new law requiring free drinking water for students in school cafeterias or food service areas. Schools must comply by July 1, 2011.

California will soon require all children under the age of 18, including patrollers and resort employees, to wear helmets while skiing or snowboarding. Resorts will be required to post notice about the law, including on trail maps and resort websites.