Digital tools arm teens, teachers and parents against autism

In February 2006, psychology researcher Gary Mesibov introduced an electronic diary to a few teens with autism at his clinic in Chapel Hill, North Carolina.

The diary, a personal digital assistant (PDA), was programmed to help the teens track their performance in school and interact with their peers. Mesibov and his collaborators at Massachusetts-based SymTrend allotted one week of their National Institutes of Health grant to train teachers and students during the feasibility testing.

To everyone’s surprise, the students picked up the technology in a few hours. “The biggest trick is teaching the teachers,” who need at least a week to learn how to use the PDAs and the accompanying computer software, says Mesibov, director of TEACCH, a service, training and research initiative for autism.

This summer, the researchers are launching the next phase, during which they plan to evaluate and refine the device.

The past five years have seen the debut of about 25 computer-based tools for children with autism and for their parents, says Chris Whalen, founder and chief science officer for TeachTown, a Seattle-based company that develops instructional software for individuals with autism who are at a developmental age of 2 to 7 years.

The tools range in function, from guiding parents through behavioral interventions to helping kids learn grammar.

Software tools have undoubtedly led to more efficient ways to gather and analyze data from children with autism but it’s not clear how effective they are at building generalized skills, Whalen says.

“This trend is happening, whether or not we’re ready,” says Whalen. “What we can do as scientists is protect the consumers by doing the research that’s needed.”

Some tools in development, such as the Behavioral Image (BI) Capture system, developed by Idaho-based Caring Technologies, may make it easier for parents, teachers and doctors to share behavioral data. The BI Capture includes a camera, a remote control unit and proprietary software that can be used to capture, store, annotate and share video clips of behaviors.

The company is in phase II of a study in which 20 teachers from private autism schools are testing the device, says Sharon Oberleitner, vice president of corporate affairs and mother of a teen with autism.

Studies of the device’s effectiveness have not been published in peer-reviewed journals but, according to a February 2007 white paper report, a five-month classroom study shows that the tool reduces calculation errors for teachers keeping track of certain behaviors.

Some products were not intended for the autism community but caught on in the classroom and at home.

Google’s SketchUp, a three-dimensional architectural design software initially launched by @Last Software in 2000 and later made freely available by Google in 2006, has allowed some children with autism ― in locations ranging from Israel to India ― to express themselves visually and spatially.

The software helps the children learn the layout and look of new destinations before they visit, notes Tom Wyman, a business development employee at Google’s office in Boulder, Colorado. Other children have discovered a knack for design.

In 2005, SketchUp’s popularity led to Project Spectrum, a collaboration aimed at improving the software’s usefulness for the autism community. The project includes the Boulder Valley School District, the Center for LifeLong Learning and Design at the University of Colorado, and the Autism Society of America, a grassroots advocacy organization.

“Some of the most rewarding stuff for us is the kids who we are in contact with and seeing what we’ve been doing with SketchUp,” Wyman says.

Second Life, a web-based virtual reality game, has also become a popular destination for teens with autism, so much so that researchers have begun designing studies to examine whether the game helps teens develop social and communication skills.

The slowness of typed communication in the virtual world ― compared with spoken communication in the real world ― may help individuals with autism fare better in Second Life, according to Simon Bignell, a researcher at the University of Derby.

Bignell is leading preliminary focus groups and interviews of people in the autism community to assess Second Life’s effect on social and communication skills.

“We are definitely not seeking to set up autism interventions in Second Life,” Bignell says. “This is a very long way off ― although if the platform is evaluated as beneficial to this community, we will explore this possibility.”

So far, evidence for the popularity or effectiveness of these programs is mostly anecdotal. Standardized assessments, which take years to validate, are paper-based and have not yet been computerized.

“We can look at our software and say these children are doing really well,” Whalen says. “But to date, none of the computer programs have true assessments. They have treatment outcome measures, but those aren’t really assessments.”

Self reporting can be biased but provides some information. For example, comparing student and teacher data can correct for bias and yield meaningful results, says Minna Levine, president of Symtrend.

Ultimately, however, no one device will prove to be the answer for every child.

“The thing is, is that it’s so individualized,” says Susan Stokes, a speech and language pathologist and autism consultant based in Wisconsin who says she uses anything ranging from a pen-and-paper checklist to a vibrating watch to help children understand the passage of time.

“What we put in place for this child might not work for another child,” Stokes says. “These kids can present so differently.”