Autism Tools Need Help

January 7, 2020 | Tim Rexer

Autism, when people hear the name of this disease they often think of people who have behavioral disabilities. As a result of their behavioral disabilities, they can sometimes excel as virtuosos in areas such as music or art. However, in recent years, the definition of Autism has expanded to include many different conditions that usually include challenges with social skills, communication, and obsessiveness with repetitive behaviors. While the definition and treatments for autism have improved in the last couple decades, most of the data collection and assistive technologies have not kept pace with technology growth like other areas of medicine.

Most Autism data collection is still dependent on active monitoring either by therapists, parents, or the individual. This requires a lot of constant interaction and engagement by everyone who interacts with the individual. This can get very hard, both financially and physically, for parents of young individuals, especially those with identical twins who have an increased rate of autism. While some of the behaviors such as repetitive actions are easy to document, it can be hard for family members to perform some of the more detailed aspects of data collection including attentiveness, frequency of communication method use, and many others.

In addition to data collection, many autistic individuals also require assistive communication tools. These tools usually fall into two categories, physical and digital based. Either implementation helps the individual communicate, however both implementations are lacking in resources. Many of the icon sets and vocabularies are usable, but inflexible. The open license icons could use the help of designers and artists to build out robust icon sets for users across all types of assistive tools. In contrast, the paid for icon sets are well developed, but are restrictive in their use by users. The primary example is the PECS (Picture Exchange Communication System) Icon Set. The first set of icons is free for individuals in physical form, but they can’t be included in outside software, this is because the PECS team wants to be able to sell their app. Additionally, if more sets of icons are not free to the individual. Individuals should have icon sets that can be used in whatever format works best for them. Since they spend so much time learning a certain set of icons, they should also be able to export these icon sets and vocabularies into any other format or tool.

So, how can you help? Obviously, these projects need help from artists and designers to create new icons and icon sets, as well as coders to develop the apps and tools. However, don’t feel like you need to be a coder or artist to be able to contribute to these projects, open source projects need help across the board. They need help writing documentation and tutorials, testing the software improvements and reporting issues, and a bunch of other tasks that go into product development that doesn’t require code. Finally, and most importantly, these projects need advocates and supporters. You may not be an individual affected by these products, but you most likely are connected to someone who does. You can promote some of the tools listed on our available tools page to friends and family members who are affected or are therapists for affected individuals. Awareness is one of the biggest and best ways you can contribute to these projects.