Quality of Autism Websites

Background: The World Wide Web (WWW) is the most frequently utilized method by parents of children with autism to obtain information (Mackintosh, et al., 2005; Chowdhury, et al. 2002). Although there are now millions of websites on autism, only one analysis has been published; Chowdhury and colleagues (2002) found 116 of 145 (80%) websites had information that could not be verified as accurate. No further research documenting methods for evaluating or studies of the content on autism websites has been published.

Objectives: First, we sought to evaluate the quality and comprehensiveness of information presented on highly ranked websites. Second, we sought to evaluate the presence or absence of quality assurance benchmarks and other characteristics of these websites. Finally, we sought to synthesize the results to make recommendations to families on how to locate high quality sites.

Methods: One-thousand four-hundred forty-eight autism experts were invited to participate in an online survey; 299 (22%) participated. A majority of the experts had a doctoral degree (63%) and 47% of the experts had 10+ years of experience in autism. The survey contained text from 30 websites identified using a 4-step selection process in July 2009. The survey contained five pages: one page of demographic questions, three pages with one website text and three corresponding questions per website (websites removed of identifying information and randomly paired and ordered across participants), and one page for open-ended comments. Each website text contained one or more of the following pieces of information on autism: general characteristics, signs and/or symptoms, causes, and treatments. Participants responded to three questions for each website. Each participant used a 5-point Likert scale (1 [lowest] to 5 [highest]) to rate the accuracy of the information and the currency of the information presented. Two members of the research team also independently evaluated sixteen characteristics of each website.

Results: The mean accuracy rating (M_ACC) across websites was 3.42 (SD=.83, median= 3.805) and the mean currency rating (M_CUR) was 3.45 (SD=.59, median=3.65). The accuracy rating and currency rating were highly correlated; r_s = .87, p < .001. For the websites in the top quartile on the accuracy rating (M_ACC≥4.0), zero offered a product or service for sale, zero promoted a non-evidence based treatment, and 6 of 7 had M_CUR greater than the median value. For the websites in the bottom quartile on the accuracy rating (M_ACC≤2.71), 5 of 7 offered a product or service for sale, 7 of 7 promoted a non-evidence based treatment, and 7 of 7 had M_CUR less than the median value.

Conclusions: Methods for directing parents to the most accurate websites containing information on autism is needed. Although the current sample was small, two characteristics emerged; 8 of 9 websites containing a top level domain of .edu or .gov had a M_ACC > median (4 in the top quartile) and 6 of 7 websites classified as “health informational sites,” (e.g., Mayo Clinic, Google health) had a M_ACC > median (2 in top quartile).