An App Helps Keep Autism Demons at Bay

By Mike Drummond

iPrompts_countdownThings were about to go awry as Dan Tedesco and his 4-year-old son Evan approached the Big Y supermarket in Ansonia, Conn., last year.

This was unfamiliar terrain for Evan. A vaulted glass atrium that framed the entrance of the store seemed menacing. And the enclosure amplified noises and voices. Most of us might find the airy enclosure a nice aesthetic.

For Evan, it was a loud, bright chamber of horror.

“He got very scared,” Dan recalls.

Evan has autism, a lifelong developmental disability that impedes social and communication abilities. Autism spectrum disorders affect on average one of every 150 people and begin at birth or within the first 30 months of life, according to the Centers for Disease Control and Prevention.

Those with autism can react violently to a change in routines – think Raymond Babbitt, the character Dustin Hoffman portrayed in the 1988 film Rain Man. Those with autism often are hypersensitive to sights, sounds, scents, touch and even taste.

For those with autism, a trip to an unfamiliar grocery store can be an emotional minefield.

To help Evan cope with his anxiety, Dan reached for his iPhone. Not to place a call, but to launch iPrompts, an app he created.

iPrompts allows parents and caregivers to communicate tasks to an autistic child through images.

To help Evan overcome his fear of the supermarket, Tedesco pulled up an image of a grocery store and explained the atrium was just a fancy entrance. He scrolled to a picture of a cookie, a cookie that Evan was going to get once inside the store. After they bought what they needed, the two would head home.

“He understood the store wasn’t a death trap,” Tedesco says.

Visual aids for those with autism typically come in the form of laminated cards, sometimes bound in a notebook, others use stick-and-stay whiteboards. Toting hundreds of images in a binder can be cumbersome.

The standard medium, says Tedesco, “is just archaic.”

Dan’s wife, Carey Tedesco, initially hit on the idea to use the iPhone’s Picture Schedule feature to replace her notebook of images. With the help of Dan’s brother, Rob, the family team fashioned an app with several hundred images to help walk Evan through everyday tasks as well as express emotions and desires.

Users can call up of images and arrange them in sequence, visually setting expectations of upcoming events, say, a night out at a restaurant.

“It’s enabled us to go do things we weren’t able to do before,” says Tedesco, “or at least with a lot less anxiety.”

The Tedescos formed a company based on iPrompts called HandHold Adaptive in August 2008. Dan maintains his day job as an attorney at Walker Digital, a research and development company in Stamford, Conn., founded by famed inventor Jay Walker, creator of Priceline.com.

Apps are bite-sized software programs loaded onto mobile devices or accessed via the Web. When it comes to developing and selling apps, the barriers to entry are low to non-existent, as the Tedescos have found out.

Apple launched its App Store in the summer of 2008. Today, apps are a $1 billion market, according to analysts, and headed to $4 billion by 2012.

As of early December, HandHold Adaptive had sold about 500 iPrompts apps.

The iPrompts app costs $49.99. The price may seem steep in a digital market where many game and entertainment apps are free. Yet some physical picture sets can cost that much or more.

iPrompts offer greater portability and customization – parents and caregivers can upload their own images or use those from others in the iPrompts community. iPrompts also use the iPhone’s GPS capability and the application’s bank of images and features to create a multimedia snapshot of a person’s scenario.

“You can give them a picture sequence, apprising them of what to expect,” says Tedesco. “For instance, ‘You’re going to church, you’re going to get in the car, there will be other people in the church, we are going to be quiet there, and when you get home you will get a reward.’

“Structure is very important for those with autism,” he adds. “And when they get upset, it snowballs.”

Lonnie Butler and his wife have a 4-year-old son with autism. The Minnesota couple downloaded the iPrompts app in December 2008. They initially balked at the $50 price tag. But they decided to pull the trigger after seeing a demo on YouTube.

He says they use iPrompts whenever they go somewhere, “the transition stuff,” as wells as at bedtime.

“It has a timer feature we use for the nighttime schedule,” he says. “He knows he needs structure. If we use another timer, he still has to see the timer picture on the iPrompts.”

Reviews for the app generally have been positive, getting an average of four out of five star-ratings from users on the App Store.

“My son has Asperger’s autism and this is wonderful for structuring his day,” wrote a user who goes by the handle Frugal Mom. “If he ‘sees’ his schedule he feels like he has more control.”

“Pistol,” who identified himself as a pediatric occupational therapist, had this to say:

“In my 12+ years of working in pediatrics … I have never come across anything as useful, mainstream, cool, compact, maintenance-free and easy to use as this app.”

However, one user who goes by the online name “techieteacher,” said the app needed some tweaking.

“The thinking behind this app is great, but it still has some bugs. Whenever I go to add/change an image, it exits the app or freezes the device… Additionally, there is no audio support (voice prompting), which would be a really beneficial feature.”

Some of those glitches have been fixed, according to HandHold Adaptive’s Web site.

Tedesco says other upgrades are in the works. Among the more compelling improvements will be data tracking. The app will be able to capture and record a variety of environmental and dietary information from users.

Subtle bits of information, such as ambient noise, the time of year, and even what was for lunch, may offer clues to better ways to control unwanted behaviors.

The iPhone’s networked functionality can harness that data, which can be measured and evaluated.

It’s a way to “deputize every parent with an autistic kid in the country,” Tedesco says. “We’re using the phone to scoop all the pieces of the autism puzzle.”

The professional medical community has a reputation for dismissing suggestions from parents. Tedesco hopes iPrompts can help bridge the gap.

Parents, he notes are trying different things all the time. He and his wife have found that a gluten-free diet has helped his son. If other parents with iPrompts find similar results, that information could be quantified and shared with researchers and doctors.

“It can direct research, guide it and provide some validity,” he says. “It will show we’re not just crazy parents sharing stuff on the Internet.”

Autism defined

Autism impacts the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resistance to changes in routines. Individuals may also experience sensitivities in the five senses of sight, hearing, touch, smell and taste.

Autism at a glance

– Between one in 100 and one in 300 with an average of one in 150 children in the United States have autism spectrum disorders.

– Autism spectrum disorders occur in all racial, ethnic, and socioeconomic groups, yet are four to seven times more likely to occur in boys than in girls.

– If 4 million children are born in the United States every year, approximately 26,670 children will eventually be diagnosed with autism spectrum disorders.

– Approximately 13 percent of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism spectrum disorders.

Source: Centers for Disease Control and Prevention

Editor’s note: This article appears in the February 2010 print edition.