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Research and the "Duh" Factor

Author: 
Marina Sarris
Interactive Autism Network at Kennedy Krieger Institute
Posted: 
April 18, 2018

Be honest: how many times have you read the results of a new autism research study, and rolled your eyes? "Tell me something I don't know," you say. Maybe you wonder why scientists spend their time studying things that seem so, well, obvious.

It's true that not every research study is earth-shattering, or even of good quality. The Interactive Autism Network (IAN) has published articles aimed at helping people become informed consumers of research, so they can recognize a questionable or biased study when it flickers across their Facebook or Twitter feed.1

But research into problems that may seem obvious could serve an important purpose. Solid, scientific studies may be the only way to measure and document a problem objectively. That data, in turn, can bring public attention to solving it.

When IAN launched a study into wandering in autism,2 some people probably wondered what all the fuss was about. It was no secret that some kids with autism were "runners" who could disappear from home, school, or public places in an instant. Their parents knew, from experience, they needed to be on high alert for this dangerous behavior. Autism experts called it wandering or elopement; parents called it frightening.

But lots of other people did not know about wandering in autism. Or, if they did know, they believed it to be rare, especially in the absence of data that said otherwise. Those other people may have included doctors, who did not warn parents about wandering when their child was first diagnosed. Or they may have been teachers and school recess monitors, who did not realize how easily or often a student with autism could escape their watchful eyes.

Here's what IAN Research Director J. Kiely Law, herself an autism parent, had to say in 2017: "Parents have known that wandering and running away were a huge problem in autism, although a lot of them didn't receive any guidance from their pediatricians about it. If they met other parents of kids with ASD, they would ask, 'Is your kid a runner?' However, there wasn't any evidence to know what the burden was, or to know how many kids were affected. IAN researched wandering several years ago, with results published in 2012. That research found that nearly half of children with ASD wandered or ran away, and more than half of those children went missing. Now that we know how common wandering is, we can come up with solutions to help families keep their children safe."

Many autism advocates have cited IAN's wandering research in their efforts to promote programs and technologies that would keep children with autism safer and/or locate them when they are lost. For example, some supporters of Kevin and Avonte's Law, an autism safety measure that is now before the U.S. Congress, have mentioned IAN's research.3

Since IAN's study was published, others have studied wandering and elopement among children on the autism spectrum. In 2016, a different group of researchers confirmed that wandering is "relatively common" for children with autism.4 These additional studies may seem redundant or wasteful to people who believe the issue is settled. But science prefers that studies be repeated to see if different researchers get similar results. Only then can we be sure that the results of the first study were not caused by chance, a mistake, or a poor design.

Many families and adults affected by autism understand this. They volunteer time and time again to participate in studies that may not always lead to huge breakthroughs or immediate changes. That is how science moves forward.

References: 
  1. Interactive Autism Network. (2018). Understanding research. Retrieved from , https://iancommunity.org/cs/understanding_research/overview
  2. Anderson, C., Law, J. K., Daniels, A., Rice, C., Mandell, D. S., Hagopian, L., & Law, P. A. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), 870-877. doi:10.1542/peds.2012-0762. Abstract.
  3. In Memory of Avonte Oquendo, The Perecman Firm PLLC. (2015). Avonte's law. Retrieved from https://www.perecman.com/avonte-oquendo/avontes-law/
  4. Rice, C. E., Zablotsky, B., Avila, R. M., Colpe, L. J., Schieve, L. A., Pringle, B., & Blumberg, S. J. (2016). Reported wandering behavior among children with autism spectrum disorder and/or intellectual disability. The Journal of Pediatrics, 174, 232-239.e2. doi:10.1016/j.jpeds.2016.03.047. Abstract.