Researchers report Wanh, Wanh, Wanh, Wuh-Wahn, Waaahn
These days autism appears to be the disorder du jour and headlines about the newest autism breakthroughs are everywhere. Sometimes filled with jargon or unfamiliar references, scientific news reports can make families feel as if they are listening to Charlie Brown’s teacher. In the face of such an incredible amount of noise, how does a concerned layperson know whether a reported discovery is significant?
Below are four quick things you can do to begin to put autism research headlines into perspective:
1. Pause: The first thing you may want to do is take 30 seconds to reflect on how far we’ve traveled as a community. Regardless of the importance of the specific results, the fact that any autism story is in the press is a remarkable thing. Every “discovery” about autism means there is someone, perhaps even half way around the world and speaking a very different language, that is working to help you. Contrast this to when your child was diagnosed 10-15 years ago—there were but a handful of dedicated scientists working on autism and there were practically no press reports about autism research. The autism community can take responsibility for this remarkable change. It is through the efforts of families and advocacy groups that autism has reached the general public’s awareness, more dollars are fed to autism science, and autism publications are now deemed worthy of widespread press coverage. The sudden deluge of reports on autism research is also indicative of the influx of federal and private research dollars that occurred five to 10 years ago—the prolonged life-cycle of research means that projects begun several years ago are finally beginning to pay off. So when hearing about any new research discovery, it’s worth stepping back and recognizing how far the world of autism science has come. Allow yourself the time to say a silent hallelujah.
2. Check the source(s): The source of a press report can sometimes provide clues to the importance of the results. Often you are reading a “press release” prepared by the institute that sponsored the work. Keep in mind institutional press offices are (understandably) under constant pressure to put out press releases to publicize the work done by their scientists, as this brings the notoriety that begets more research dollars. Unfortunately, the standard short format of press releases, along with the false belief that the general public cannot stomach scientific detail, usually results in the omission of the detailed back story, or scientific context, which is the very thing that will help scientific outsiders judge the importance of the new results. Together this has the sad side-effect of appearing to inflate the significance of the findings, with the press release punch line inevitably reading: “The Scientist from So & So discovered X, which may one day provide us with a cure for autism.“ You should therefore always check the source of what you are reading and preferentially look for reports of the story from outside sources. Moreover, if multiple media outlets are dedicating column length, air time, reporter hours or crawl space to the story, chances are greater that the discovery is of significance.
3. Find the context: Above all else, you should seek out credible news reports from trained science writers that take the time to provide the context of the new research findings. What was the particular scientific problem that the researchers decided to tackle? What was already known when they started? What did the results add? Exactly how are they related to an improved chance of helping someone with autism? Without answers to these questions, you’ll be hard pressed to decipher the true significance of the research. One particularly good outlet for reporting the context of new autism findings is the Simons Foundation website. Autism Speaks also maintains a blog on recent science news usually prepared from the What-Does-It-Mean-To-Me perspective. As an added bonus, they sometimes have the scientists responsible write about the discovery in their own words—even if these may sometimes veer into more complicated concepts, they can be the most engaging reports of all because they are less filtered through the lens of publicity. Finally, several journals are experimenting with podcasts directed toward wider audiences to help in understanding the real-world significance of research findings. The research journal Autism: The International Journal of Research and Practice has a new podcast series, for example.
4. Inform yourself: If you are especially motivated to learn about the specific merit of a news report, the best way is always to obtain the original science publication. The National Library of Medicine maintains an index of biological and medical journals called PubMed. Type in keywords and/or the last name of the lead scientist mentioned in the press report. (Press coverage is sometimes given prior to the actual release of the publication, so you may have to wait until PubMed has had the time to add it to its database.) If you find the paper, you can click on the title to get to the science abstract. These are freely available so you can print it out and bring it to your doctor or any scientifically-knowledgeable person to help you understand the technical details. To access the full research publication you can click the icon(s) to the right of the abstract (above “related citations”). Unfortunately, the majority of time free access to the full text is blocked by publisher copyright and you’ll be required to pay for the article—note that it’s precisely for this reason that Autism Speaks adopted a "public access" policy requiring its grantees to make the full text of their research publications available for free in a public repository called PubMed Central—although exceptions to this rule can be found by paying special attention to any additional links that say “Free Article.” An alternative to the PubMed database is the website of the science journal that published the research. The name of the publishing journal should be in the press report you read initially. This is very important. If there is no reference to the publication of the discovery, this is a big indication that the press is reporting preliminary findings, perhaps announced at a research conference, which are not yet fully-developed or scientifically-vetted. Always treat the significance of such reports with healthy skepticism!
The previous sentence is perhaps the most germane of all—the best way to navigate the sea of TV and Internet headlines is to think like a scientist and become a skeptic. Scientists are trained to be critical and have faith only in peer-reviewed published data (and even then, the data must be considered intriguing at best until the results are independently replicated). If something someone is claiming seems too good or too simple to be true, it probably is.
However, as a non-scientist, just because something you read has yet to impact your day-to-day, you must not immediately assume it isn’t relevant. Although a lot of us are waiting for an explosive result, in reality, well-done research is mostly an iterative process, with every published finding, no matter how little or how big, illuminating a next step. And that’s what the headlines are really telling us—that after a decade and a half of waiting, those steps are FINALLY coming fast.