Monday, May 14, 2012

Autism Misinformation: Putting My Foot Down (Part 2)

Jessica Severson

Part one surveys the first part of the sequence of events by which research turns into pseudoscience, and "truth fades away in favor of headlines and pageviews and gossip." Onward.

Part Five: News Articles

This is a process. First research, then op-ed, then press release and finally news articles.

So what's the headline of our news article? Top 10 Chemicals Most Likely to Cause Autism and Learning Disabilities. Guilty of serious fear mongering, no? A more accurate title may be: Researchers propose list of chemicals potentially tied to neurological development for further study. But I doubt anyone's going to write that.

The article itself, to be fair, is full of caveats. The reasons for the increase in autism are "controversial." There is a "gap in the science."  But then you get a sentence like this:
But clearly, there is more to the story than simply genetics, as the increases are far too rapid to be of purely genetic origin.
Clearly? Clearly says who? What source says it's too rapid? The author certainly isn't a reliable source. She is Robyn O'Brien, a writer for Prevention who posted this article. Her scientific credentials are nonexistent. She is a former financial analyst who now writes about the food industry. She has an MBA, and her undergraduate was in French and Spanish.

Full disclosure: I have a B.S. in Biochemistry, but I feel I'm unqualified to write this article. I'd much rather it be written by someone with a PhD. I'm married to a PhD, which has given me a lot more exposure to science since leaving school, but I fully acknowledge that I shouldn't be the one doing this. I know how to read a scientific article and examine its conclusions, but I certainly am not someone who can tell you if their methods and analysis are correct.

But I'm talking because there aren't enough people talking about it. Because the PhDs aren't generally science writers. They are scientists. They write about their research in journals, not in the newspaper. And certainly not on a blog for a healthy living magazine.

The author goes on to restate the inaccurate subheadline of the press release verbatim. In the end she suggests things like buying organic produce, opening your windows and buying BPA-free products.

This may be part five of this process, but it's where many readers join in. Many of us will only read this article and not the press release or the op-ed or the research papers. Most of us aren't qualified to do so; all we have is this article. Well, we have that and what other people tell us. Which leads us to our next step.

Part Six: Readers

The article is frustrating, but I can only get so mad. She is saying what the scientists told her to say. She has even included some cautionary language. The problem is that when writing for laymen, you have to be careful.

And with autism? You have to be really careful. Just for you, I'm going to venture into the comments to this article to show you how people have responded.
--How about we quit injecting our kids with aluminum, formaldehyde and the rest of the toxic stew that they call vaccines — we bypass every natural defense our bodies have (skin, saliva, stomach acid) to put these things directly in the blood stream.

--Thank you Robyn for always providing sound information to continue guiding our decisions.

--What about heavy metals like Arsenic that are trapped in soils that our “organic” brown rice is growing in to be made into brown rice syrup to sweeten organic foods and baby formula? Not to mention the reports coming in regarding the radiation and contamination from Fukushimi that has reached the west coast an is spreading across this country in the produce and even the pollen…

--Unvaccinated children are some of the healthiest little people on the planet. As far as the Autism link, who really knows but why risk it.

--Thank you for this information. It confirms to me that we should keep doing what we are doing. It also helps me to enforce our no shoes policy in our home. Some people are so disrespectful and just don’t take them off and I hate to sound like a nag and ask even though they already know its what we prefer.
Thankfully there are some people in there who take the writer to task, but how is a reader to trust any one commenter over another? You have no way of knowing from a comment what someone's experiences or qualifications are.

There's a reason we need responsible scientific reporting. I'm all for the open dissemination of information, but I'm also aware of what happens when people read something they don't understand.

I encountered this FB conversation the other day. Usually I overlook such things but I could not help myself. I jumped in. I tried hard to be polite and present facts. When all that was over, no one was convinced. The response?

Enough articles on vaccines and people are scared -- even without evidence. Enough headlines and people don't bother reading articles. It doesn't matter how much is retracted or debunked, the damage is done. [Emphasis added.]

We need responsible science reporting. We need responsible reporting, period. I've seen plenty of lazy articles on Supreme Court opinions that lead me to read the opinion myself only to realize that they've stated the conclusions all wrong.

I don't want to go on all day, but I do feel like it's important for us to put our foot down and demand better.

We aren't all scientists. But we can ask for science writers with the appropriate qualifications. We can ask for links and citations in their articles. (I spent quite some time tracking everything down for this post, and luckily I'm relatively familiar with looking up scientific articles online.) We can ask for articles that show failed connections. It doesn't all have to be "Autism linked to X" there's plenty of "Autism not linked to Y" that happens in these studies but you never see that, do you?

As for us laymen, we have to find our own trusted experts. Ask your pediatrician. And if your pediatrician's not qualified (most of them are MDs but not PhDs) ask them if they have a trusted source. Track down specialists in Autism with PhDs and ask them what they think of the research. Find reliable books and articles and spread them to your friends. We can't necessarily do a lot, but we can do our part to stop the spread of misinformation and demand better.

This essay previously published at Double X Science.