After my adventure with sucralose on Saturday, I decided to head to google to see if anyone had anything to say about people on the autism spectrum and sucralose. It was mostly idle curiosity, but it sent me down a very different track in the end.
In my browsing, I stumbled across TACAnow, TACA standing for “Talk About Curing Autism.” I really do not want to get into the entire “should there be a cure for autism” debate at the moment, instead I want to talk about something I found on their “about autism” page. They have a facts section, and the very first “fact” was the following:
“One in every 88 children in the U.S. have been diagnosed with autism. (NOTE: This number does NOT include: PDD, Aspergers and other spectrum disorders. These statistics are endorsed by the CDC, American Academy of Pediatrics, and other federal organizations.)”
Now, this tripped me up because it did not at all mesh with what I had previously read about the CDC study – that the number was not a reflection on how many children were diagnosed, and that it included a number of spectrum disorder. I thought it was odd that a website that is supposed to be about autism would get it wrong. Wouldn’t they verify their facts before publishing them?
Before going further I decided that I should verify my own facts first. So I headed to the CDC’s website to see what they had to say about it. Rather conveniently, they have the abstract for the study available on their website for everyone to see. The section called “Description of System” is what is relevant here, and there are two sentences that were of immediate relevance to TACA’s “fact.”
“ADDM [the group the CDC created to do these sorts of studies] does not rely on professional or family reporting of an existing ASD diagnosis or classification to ascertain case status. Instead, information is obtained from children’s evaluation records to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years.”
“A child is included as meeting the surveillance case definition for an ASD if he or she displays behaviors (as described on a comprehensive evaluation completed by a qualified professional) consistent with the American Psychiatric Association’s Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: Autistic Disorder; Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS, including Atypical Autism); or Asperger Disorder.”
This means that TACA is publishing a blatant and verifiable falsehood, which is very disturbing to me. It’s bad enough when news services report badly, but an autism website has no excuse at all.
After I publish this post, I intend to send them the following letter using their “contact us” form:
I recently stumbled across the tacanow website while I was looking for information about autism, and took a look at the “about autism” page. I could not help but notice that the very first point in the “facts” section (One in every 88 children in the U.S. have been diagnosed with autism. (NOTE: This number does NOT include: PDD, Aspergers and other spectrum disorders. These statistics are endorsed by the CDC, American Academy of Pediatrics, and other federal organizations.)) had two distinct inaccuracies, which is something I find quite bothersome.
- The CDC study did not indicate the number of children who are diagnosed, but instead looked at health and school records to see who fit the criteria. As a result, the number is at best an estimate, and has nothing whatsoever to do with the number of children who have been diagnosed with autism.
- This number does, in fact, include PDD-NOS and Asperger Syndrome.
Both of these facts can be verified on the CDC’s website, as they provide an abstract of the study for public viewing here: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w
The relevant information is contained in the section headed “Description of System.”
I believe it would be wise to consider correcting these points on your website.
I guess we’ll see if they get back to me or fix the error.
After all that, I decided to see just how well or poorly various new services were doing on reporting about this study. I did another quick google search simply for ‘autism 1 in 88’ to see what I’d get.
To be honest, most of the results were neutral. I couldn’t really classify them as accurate or inaccurate – more that they were simply vague and unspecific. Even that could probably be considered poor reporting, though. I did not find many with a link to the abstract, either.
There were four that were particularly bad.
ABC news said, ““One in 88 children is diagnosed with an autism spectrum disorder, or ASD, by age 8, according to a study released today by the U.S. Centers for Disease Control and Prevention” Worth noting – the video was equally inaccurate.
Fox news, ““The Centers for Disease Control and Prevention estimates 1 in 88 U.S. children has been diagnosed with an autism spectrum disorder (ASD).”
Taunton Gazette, ““the Centers for Disease Control announced that the number of children diagnosed with autism is now 1 in 88”
JSOnline, ““One in 88 children in the United States is now diagnosed with an autism spectrum disorder that makes social interactions and communication more difficult, according to new estimates released Thursday by the federal Centers for Disease Control and Prevention.”
All four of these news sources reported factually incorrect statements. Statements that are easily verifiable and thus there is absolutely no excuse for getting it wrong. Overall I am still most disturbed by the TACA website – after all, news reporters getting things totally wrong is hardly remarkable at this point, as depressing as that is. (disclaimer: I did not read the entirety of the articles; I focused specifically on how they chose to report the statistic)
I do, however, also want to note that I found some examples of very good reporting as well. CNN, Time, Technorati (though oddly, they linked to an inaccurate article on another website), NYDaily News, and Autism Speaks were all accurate from what I could see. Several of them even linked to the CDC abstract in their articles. So I can at least say that the problem is not universal.
Still, this bothers me. TACA especially bothers me, given that they are an autism website. Spreading misinformation helps no one, and there is simply no excuse for inaccuracies or, to be honest, even vagueness. Sadly, I don’t really see much of a solution to this problem.