Parents herald rise in apps to help treat autism but proof of therapeutic benefits is lacking
- 11 February, 2012 08:18
With one honk, the course of Shannon Des Roches Rosa's day abruptly changed.
"It's my son," Rosa announced, as she quickly removed the microphone pinned to her shirt. "I've gotta run," she said, as she hurried out the door of her sprawling home in Redwood City, California. Her 11-year-old son, Leo, just home from school, must be met at the bus at the top of the driveway before coming indoors.
Once inside, Rosa immediately showed him the schedule of activities. First up: Bathroom, hand-washing, then a snack.
Working with an easy-to-understand schedule that usually includes picture icons is key for a smooth day for Leo and many autistic children. Experts say autistic children respond best to things they can see. Too often, things they hear or feel are off-putting and stimulate their senses in ways that can cause pain or irritation.
"Auditorily they have a difficult time processing something, it's sort of like someone speaking a different language to you," said Jennifer Sullivan, the executive director of the Morgan Autism Center, which is Leo's school. "So from the very beginning we would draw pictures of 'this is what you're schedule would look like for the day.'"
But after his snack, Leo's free time usually involves the family iPad. Rosa believes his instinctive draw toward visual learning is letting the iPad reach her son in ways no other therapy had done before. The iPad, she said, has changed Leo for the better, making him more independent. And she's quick to point out that he's still an 11-year-old boy who deserves to play sometimes, which he also does on the family's iPad.
The U.S.-based organization Autism Speaks estimates there are hundreds of apps built for use on iOS devices, specifically for autism. A search of the Apple iTunes store brought more than 580 autism-related apps, while an Android Market search for autism apps yielded about 250 results.
"The more we dig, the bigger the rabbit hole is and we're starting to think tech is a really big key for how we can develop therapies quickly," said Marc Sirkin, vice president of social marketing and online fundraising for Autism Speaks.
However, the organization is cautious about the iPad's popularity. Its quick ascent means no one has actually studied which apps are of therapeutic benefit. Sure, Sirkin said, parents may hear anecdotal stories of apps completely changing a child's life, but there is no measurable proof yet that the apps really work.
"The challenge with iOS apps is a lot are developed by well-meaning parents but under no guidance with autism experts," Sirkin said. "For us, it brings in questions as an evidenced-based organization and we're starting to ask: Does any of this actually make any difference ... the danger is that the iPad becomes a really expensive toy."
But some parents are OK without the proof just yet. Eric Tanner, the father of an 8-year-old with autism, said what the iPad really offers is accessibility and hope that a better life is possible for his child.
"The reality is for people like us, it's a huge amount of hope," Tanner said.Tanner said the previous machine available for his daughter Sophia cost a couple thousand dollars and was programmable with only 20 keys to ask for specific things, like helping Sophia to say if she was hungry or thirsty. But it couldn't help her express emotions. Just a year later, Sophia's iPad is loaded up with a nearly $500 app built to help autistic children expand their vocabularies.
"It's a huge learning tool, it's massive," Tanner said. "It's really been one of the biggest things in her life so far."
Still, the iPad remains just one many tools to help Sophia, who has a full weekly schedule complete with equine therapy, floor therapy, speech and occupational therapy, to name a few.
Some app builders are coming to the process by seeing a need, themselves. Karen Head is a speech therapist from Boston. She and two colleagues often talked about writing a book to help their patients, but it wasn't until they hit on the idea of building an app that they started their business. Now, All4myChild's packaged app called "Social Adventures" has 44 activity descriptions, nine visual cartoons that are mostly focused on social interaction skills, and a new game coming out as a separate app on Monday.
"We wanted to have a platform we could continue to add to, so families and kids could grow with the app and we could make changes" Head said, pointing out that anyone able to invest about $10,000 can have an app ready for the marketplace within six months.
Which is exactly why Autism Speaks warns parents about finding salvation in apps.
And in some ways, Head agrees there is reason to be cautious.
"The dark side of all the bells and whistles is that in some cases it's too much, and kids get overly focused on things that jingle and jangle," Head said. "As a therapist, we want them to listen to us."
Sullivan seconds that idea, saying that even Leo, in particular, can get drawn to the patterns in an app rather than actually learning the content it is trying to provide.
"It's a little bit tricky because it's such a compelling medium for kids with autism, they want to do it intensely," Sullivan said.
Autism Speaks is excited about two different areas of research that could use gaming consoles to teach autistic individuals how to interact in social situations and learn how to read facial features better.