Reichow, B., Halpern, J. I., Steinhoff, T. B., Letsinger, N., Naples, A., & Volkmar, F. R. (2012). Characteristics and quality of autism websites. Journal of Autism and Developmental Disorders, 42(6), 1263-1274.
Briana Ostrosky, MA, BCBA
May Chriseline Beaubrun, MEd, BCBA
Why research this topic?
Autism spectrum disorder (ASD) is a severe neurodevelopmental disorder that includes impairments in social interaction and communication, and repetitive patterns of behavior, interests, and activities. ASD is acknowledged as a major public health concern as its prevalence is on the rise (Johnson, Handen, Zimmer, Sacco, & Turner, 2011). For this reason, parents and providers alike are in great need of information about treatment. The internet is one of the most common resources for obtaining health-related information, using search engines such as Google and Yahoo. Unfortunately, there are conflicting reports regarding the quality of information obtained through search engines, with as many as 80% of websites about ASD including content of questionable accuracy. Inaccurate information may not only delay or affect treatment, but could also be unsafe. To date, there has been little guidance available for caregivers, educators, and professionals about how to locate websites containing high-quality information on ASD. Obtaining high-quality information is an important part of implementing evidence-based, effective treatment as soon as possible for optimal outcome.
What did the researchers do and what were the results?
The investigators evaluated the quality of autism websites using two studies.
Overview of Study 1: In the first study, they evaluated characteristics of the most highly ranked websites when a keyword search of the term “autism” was conducted using three popular search engines. The sample for Study 1 consisted of the top 100 websites located when “autism” was entered into the Google, Yahoo, and Bing online search engines. The researchers selected, defined, and coded the following website characteristics: advertisement (i.e., selling a product), attribution (i.e., references to peer-reviewed material), authorship (i.e., one or more authors of the information were specified on the website), copyright symbol (©), currency (i.e., evidence it was updated within 6 months), disclaimer (i.e., specifies information does not replace opinion of qualified professionals), disclosure (i.e., conflicts of interest or affiliations listed), a method of contacting an individual associated with the website (e.g., phone number, email address), product or service for sale, promotion of non-evidence based practices identified by the National Autism Center (2009), purpose of the website, reading level appropriate for consumers, seal from a health accreditation organization (e.g., HONcode), and top level domain (e.g., .com, .edu, .gov, .net).
Results of Study 1: Most of the 164 websites included in the study were registered using a .com or .org level domain. The most popular website purpose was to feature an organization or freestanding clinic. Two quality indicators were present on nearly all websites: all information was available without providing personal information, and a method of contacting the website was provided. Approximately half of the websites were current, provided author information, and/or contained a medical disclaimer. In contrast, about 21% offered a product or service, and 17% promoted a non-evidence based treatment. Moreover, 50% of the websites were written much higher than the average reading level of parents in the United States.
Overview of Study 2: Study 1 did not assess the quality of information, which was a major limitation. A follow-up study was, therefore, conducted which entailed 30 websites selected using the Google search engine. The websites selected contained information on one or more of the following topics: general characteristics of autism, signs of autism, symptoms of autism, causes of autism, and treatments of autism. This included university affiliated sites, ranked sites as well as sponsored links. Autism experts completed an online survey, evaluating website characteristics and quality. The 299 respondents rated the accuracy and currency of the information and were asked to whom they would recommend each website.
Results of Study 2: The following characteristics were statistically related to website quality: 1) whether the website offered a product or service for sale; and 2) whether the website promoted a non-evidence-based practice. Websites that had a .gov top-level domain were significantly more likely to have a higher website quality estimate than websites with a commercially oriented top-level domain (e.g., .com, .org). Higher quality indicators were also noted on most websites that had a seal from a health accreditation organization (i.e., HONcode, Utilization Review Accreditation Commission [URAC]). The two most frequently recommended websites were The Association for Science in Autism Treatment (ASAT) and Wikipedia, although the authors suggested using caution when using Wikipedia due to variable accuracy and utility in its other health-related research. Wikepedia articles are collaboratively written, and so it may be challenging to identify sources.
What do the results mean?
Having informed consumers is a cornerstone of evidence-based practice (Reichow & Volkmar, 2011; Straus, Richardson, Glasziou, & Haynes, 2005). The researchers attempted to identify website characteristics that could lead consumers to websites with high-quality information on ASD. In Study 2, three positive associations between website characteristics and website quality were found. First, websites from universities and government agencies, which in the United States have a top-level domain of .edu or .gov, appear more likely to contain higher quality information. Second, websites with a seal from a health accreditation organization appear more likely to contain high quality information. Finally, websites that were coded as being a health information site appeared to be of higher quality than websites with more general purposes (e.g., blogs, forums, personal pages).
ASAT was one of the most recommended websites for academics, clinicians, and teachers while websites of government agencies were frequently recommended for parents. Although the World Wide Web has the potential to put consumers in contact with resources that are high quality, the investigators suggest using the internet as a supplement, not a replacement, for information obtained from professionals and experts in the field (e.g., pediatricians, psychologists, psychiatrists, special educators)
What are the strengths and limitations of the study?
Study 1 limitations included the examination of only the top 100 websites across three search engines. It’s unknown whether this strategy provided a representative sample of all websites, making it impossible to generalize results of the analysis to the overall population of websites containing information on ASD. Although the evaluators addressed the major limitation of the first study (i.e., not measuring website quality),
Study 2 also had limitations. First, although the 22% response rate of the survey is somewhat lower than ideal, it did provide the amount of data required to conduct the analyses. Second, the evaluators opted to use a small sample of websites (30) to obtain multiple ratings for each website. The small sample of 30 limits the ability to draw conclusions and generalizations to the larger population of websites containing information about ASD. Finally, to increase the response rate, the evaluators designed the survey such that each respondent only rated up to three websites. If participants had rated more websites, the ability to draw more definitive conclusions would have been improved with a larger sample size. This would increase our confidence in the website quality score estimates.
Johnson, C. R., Handen, B. L., Zimmer, M., Sacco, K., & Turner, K. (2011). Effects of gluten free/casein free diet in young children with autism: A pilot study. The Journal of Developmental & Physical Disabilities, 23(3), 213-225. doi: 10.1007/s10882-010-9217-x
Reichow, B., & Volkmar, F. R. (2011). Evidence-based practices in autism: Where we started. In B.Reichow, P. Doehring, D. V. Cicchetti, & F. R. Volkmar (Eds.), Evidence-based practices and treatments for children with autism (pp. 3–24). New York, NY: Springer.
Straus, S. E., Richardson, W. S., Glasziou, P., & Haynes, R. B. (2005). Evidence-based medicine: How to practice and teach EBM (3rd ed.). Edinburgh, Scotland: Elsevier.
Citation for this article:
Ostrosky, B., & Beaubrun, M. C. (2017). Research summary: Characteristics and quality of autism websites. Science in Autism Treatment, 14(1), 31-33.