Autism Community Interest in and Use of Mobile Applications and Web-Based Tools for Tracking ASD-Related Information

Background: The accessibility of mobile applications/web-based tools for tracking health information has increased in recent years, allowing for many new technologies to be developed for tracking autism spectrum disorder (ASD)-related behaviors and information. At the International Meeting for Autism Research(IMFAR), technology presentations have increased from eight in 2004 to 36 in 2008 [1]. While there are many education, communication, recreation and tracking technologies available for ASD, few people use them.  One study found that only 25% of participants reported using technologies on a range of devices for people with ASD [2]. While many mobile applications/web-based tools are available for tracking ASD-related behaviors and information, more research is needed to ensure that these products align with users’ needs and goals.

Objectives: The aim of this study was to survey interest in and use of mobile applications/web-based tools to track ASD-related information within an online community of parents/guardians of children with ASD.

Methods: An anonymous online survey was distributed to 16,031 participants of the Interactive Autism Network (IAN) over five weeks. The survey’s primary aims were to assess the autism community’s interest in participating in SPARK, a SFARI-supported web-based autism research study, as well as use of/interest in mobile applications/web-based tools to track ASD behaviors and related information. For the latter aims, respondents were asked to report on their past and present use of mobile applications/web-based tools in the areas of recreation, social/communication skills, education, and organizing and tracking, as well as interest in using applications for tracking ASD-related behaviors of their children. Data were abstracted from SurveyMonkey and analyzed using Stata, version 12.0.

Results: A total of 943 parents/guardians of children with ASD completed the survey. Eighteen percent of parents/guardians reported they had used a mobile application/web-based tool to track ASD-related information about their child/dependent. Among all parents/guardians, the most important features in an ASD-related mobile application/web-based tool were ease of use (75%), low cost (63%), ability to use on multiple devices (36%), and multiple features (36%). Among all respondents, parents/guardians were primarily interested in tracking daily behaviors (63%), specific events (51%; e.g. tantrums) and connections between two things (49%; e.g. behavior and diet). Seventy-four percent of parents/guardians agree that they would be willing to spend several minutes a day (>5 minutes) entering data into a mobile application/web-based tool if they could see those changes in their child’s/dependent’s behavior visualized over time.

Conclusions: Findings from this study demonstrate that, despite participating in online research, few parents/guardians in IAN use mobile applications/web-based tools to track ASD-related information about their children/dependents. However, many parents/guardians said that they would spend several minutes a day entering data into a mobile application/web-based tool if they could visualize changes in their child’s/dependent’s behavior over time. Needs and desires of parents/guardians who currently use mobile applications/web-based tools closely matched those that had not previously used these tools. When developing such resources for SPARK, further user-testing is crucial to ensure that technologies are easy to use, engaging and collect/track information that is useful to families affected by ASD.