Topher Wurts’ eyes are always scanning the landscape. At a new park, while others are relaxing, he’s eyeing the fence line, looking for gaps or open gates.
His 13-year-old son, Kirby, has autism. He tends to run away, as many autistic kids do. They lack a general awareness of the danger involved with not being with a parent or guardian.
What might be a simple day out for most people—to the park, to a restaurant or to a vacation spot—can be a challenge for families with autism.
“When you leave the house, you have to think, ‘What’s gonna work with these guys, and what isn’t?’” Wurts says. “As a result, unfortunately, many autism families don’t leave the house.”
Like a lot of parents of kids with autism, Wurts and his wife Jana keep copious notes of autism-friendly places in their town of Chester Springs, Pennsylvania. They trade recommendations with friends about restaurants and venues that cater to the needs of autistic children, where dietary restrictions and over-sensitivity to lighting need to be considered.
That’s the basis behind Autism Village, a Yelp-like app for families like theirs. Topher conceived the idea for the app, and his inspiration, Kirby, is listed as a co-founder.
Set to debut for free on Google Play™ and the Apple® App Store℠ later this year, Autism Village will let people find, review and rate places based on their level of autism-friendliness. Reviews could come from parents or higher-functioning adults. Although there are similar online directories, they are specific to certain regions and may lack reviews, Wurts says.
“We said, ‘You know what? The way to do directories is to do it as an app, where we’d crowdsource ratings and reviews that are autism-friendly and can be easily shared,’” he says.
Tracy Buck, Autism Village’s special education advisor, believes the app will be a helpful tool for overwhelmed parents.
“It will make a difference in the number of families choosing to live their life and expose their child to the real community—that they hopefully will be able to be a part of in the future,” Buck says. “If people are more knowledgeable, it really opens up so many opportunities for these families.”
Autism is a neurobiological condition that impacts people’s cognition, behavior and communication. Some people on the autism spectrum—such as those with Asperger’s syndrome—are high-functioning, but may have trouble in social situations. Others diagnosed with autism may be mute or not be able to use the bathroom by themselves.
Three million families in the US have a child with autism, Wurts says. The Centers for Disease Control and Prevention estimated in 2014 that 1 in 68 children in the US has been identified with autism, up about 30 percent from 2012.
Wurts, a father of two, says having a child with autism can cost a family about $17,000 a year in the US. These families also spend time finding places that are accepting of their children and their behaviors.
Some kids with autism are on special diets to reduce symptoms, so finding a restaurant that serves gluten-free or caffeine-free food can prove difficult. To avoid sensory overload, autism families also seek well-lit environments with less noise.
The Wurts family has found a safe haven in VIP Pizza & Pasta. An autism awareness banner hangs in the parlor’s front window. The owner, Saib Madanat, has a son with autism; he and his staff understand the challenges.
Wurts’ older son, Zandy, 14, loves the shop’s pizza. Kirby, 13, loves the french fries.
“We’re not even through the front door and [Madanat]’s putting the fries in for Kirby,” Wurts says.
Since Kirby’s diagnosis at 18 months, the Wurts family has struggled to find places like VIP Pizza that accommodate his needs. Similarly, it’s important for the Wurts family to locate enclosed parks or other secure areas where Kirby can play freely.
“When you’re traveling, it’s really daunting. Hopefully, this [app] will make a big difference,” Wurts says. “You could just open up your smartphone and see what’s near to you that has good ratings, [and] you’re off and running.”
Kickstarting the vision
Wurts and his team conceived the app idea in the fall of 2014.
Six months later, the Autism Village project went live on Kickstarter, an online crowdfunding platform. Wurts’ team of educators, businessmen and app developers reached its goal of $38,500 just 12 days.
People kept backing the idea. When the funding period ended, more than 1,200 people pledged $75,393. It was the single biggest online crowdfunding effort for autism, Wurts says.
“That’s just humbling,” he says. “What we’re doing is relevant and meaningful to a lot of people.”
Expanding the network
To increase the reach of the project, Wurts and Kirby did network TV interviews. That’s how Jennifer Sollars Miller initially heard about Autism Village.
Sollars Miller has a 17-year-old son, Josh, who has autism. She co-founded the nonprofit Autism Friendly Locations in Tulsa, Oklahoma, with Michelle Wilkerson to help families explore the community without as many stares and unwanted comments.
The women created the AOK logo that people with autism can wear to help let community members know about their disorder. Employees at autism-friendly locations are trained to recognize the AOK logo and treat people with autism and their families accordingly. There are more than 100 locations in the Tulsa area.
Like Wurts, Sollars Miller says it initially was a challenge to find places to take her son.
“We could go everywhere; we just couldn’t stay places because of the stares or the comments,” she says. “The only way he’ll learn appropriate behaviors is to go into some of these places, but you have to have the understanding environments, and that’s what we’re trying to provide.”
The AOK effort will be worked into Autism Village. When businesses and organizations sign up with Autism Friendly Locations and get trained, a badge will go on the Autism Village app with an AOK logo.
The app will support badges from other autism awareness organizations. The badges will appear with the reviews, ratings and photos on the businesses’ profiles.
Creating an autism-friendly location
Sollars Miller helped train the staff at Tulsa’s minor league baseball stadium to recognize the AOK logo and treat autism families with more care. Justin Gorski, the Tulsa Drillers’ director of promotions and entertainment, says the process was easy and rewarding.
“A lot of companies could do it,” Gorski says. “It’s just taking that extra step to teach your staff. To hear the families say, ‘We feel comfortable coming here, and we appreciate your employees and all the extra effort that they go through to make sure that we have a good time’—that goes a long way for us.”
Eventually, Wurts hopes Autism Village will help train businesses to become more accommodating to autism families. The team also wants to provide a private collaboration space using a “friending” model like Facebook, so parents, doctors, therapists and teachers can share information about a child.
A parent-teacher communication app and a classroom management app for special education teachers are also planned.
“One of the biggest challenges that parents or even autistic adults have are sometimes with seemingly simple day-to-day problems,” Wurts says. “If we can ease that and make that better, then potentially we could make a better future for folks living with autism.”