Thursday, August 11, 2011

Quality Research

Every now and then I read the abstract for a study and just have to laugh at the absurdity.  The following is one of those -

Characteristics and Quality of Autism Websites.
J Autism Dev Disord. 2011 Aug 6. [Epub ahead of print]

Reichow B, Halpern JI, Steinhoff TB, Letsinger N, Naples A, Volkmar FR.
Yale Child Study Center, 230 South Frontage Road, New Haven, CT, 06519, USA.

The World Wide Web is a common method for obtaining information on autism spectrum disorders, however, there are no guidelines for finding websites with high quality. We conducted two studies examining the characteristics and/or quality of autism websites in 2009 and 2010. We found websites with a .gov top-level domain had a statistically significant association with high quality websites and websites offering a product or service and websites promoting a non-evidence-based practice had a statistically significant association with poor quality websites. Based on our work we concluded that online information should not replace the information consumers obtain from professionals. Further implications for practice, overview of study limitations and future directions are provided.

PMID: 21822761

I don't think I have ever seen anyone try to say that a top-level domain name is statistically significant of anything before let alone say that it determines whether the site is "high quality" or not.

Seriously, how exactly do you define "high quality" so that it isn't just an arbitrary standard that you made up and how on earth do you get away with claiming that this arbitrary definition can have a statistically significant association with anything.  What does that even mean?

You might as well just spell it out and say that you liked what these sites said better than others and don't pretend that there is some sort of science behind it.

And don't even get me started in the idea that "consumers" should give more credence to information dispensed from professionals.  There are many "professionals" out there that don't know the first thing about autism let alone have any clue about how to deal with it.

I would even go so far as to say that the majority of medical professionals that deal with young children don't have a clue when it comes to autism.  If I had a dollar for every time I have heard of a pediatrician using a line like "he's just being a boy" or "they will grow out of it", well, I would be several hundred dollars richer at the very least.

OK, I guess I did get started.  But really, we have been extremely fortunate in having an excellent team of knowledgeable professionals working with our children, but we still have to do our own research to separate out fact from fiction.  We have had "professionals" tell us all sorts of garbage and completely miss things that we managed to catch because we know enough to do our own research.

I know that there is a serious and important point here.  It is important to make sure that what you are looking at is a knowledgeable and reputable source.  But according to this paper we should assume that the information provided by professionals, many of whom are completely clueless, is the more reliable source and disregard the vast amount of reliable and accurate information that the internet can provide?

Yeah, right.


  1. I think autism jabberwocky is a very high quality autism website. Of course, I am not sure how you could have heard "he's just being a boy" so many times. If I remember correctly you have three daughters and no sons.

  2. Are they sayin' my "Mrs Ed" site is too ghetto and ain't top notch? Hee Hee. I just hope they didn't use tax payer money for their little study.

  3. Thanks Jonathan.

    We knew another couple who had twin boys the same age as our twins who also weren't talking or meeting other milestones. But unlike our pediatrician who actually recommended an evaluation at 14 months, theirs just told them that "they were just being boys" and were developing slowly. The last we saw them (several years ago now) they were still having issues with talking and socializing but their pediatrician was still telling the parents that everything was fine.

    We have heard similar stories from many other autism parents in our area. Pediatricians (at least in this area) are notorious for ignoring parental concerns about how their children are developing.

    I think this might be why many children don't receive an autism diagnosis until they reach school age.