Autism Action Hero
by Sally Anne Flecker
Katie Hench (MNA ’11, ND ’05) didn’t really understand what autism actually is until she got to college. As far as she was concerned growing up, her younger brother, Jon, was just the way he was. She knew she interacted with him differently than the way she talked to or played with her older brother. Still, she simply took him at face value.
When she was old enough to babysit, Hench would play pretend games with Jon. But she’d always take into account how literal he was. So instead of packing a pretend suitcase for a trip, they would pull down a dusty suitcase from the closet, pack it with clothes, go out their front door and ring the bell. Looking back on it, Hench realized how those kind of games helped prepare her brother when he faced something out of his normal routine, such as going to a hotel.
“Through my brother, I knew that how you engage with people really depends on the person you’re engaging with. It’s a matter of looking inside that person, understanding how they process information, and what makes them overwhelmed or what helps them engage,” she says. “That always was, and still is, the most fascinating thing to me.”
That fascination and understanding have shaped her career. She is CEO of the software startup Infiniteach, which is pioneering technology to help individuals with autism. The Chicago-based Infiniteach came about in 2013 when Hench and two other autism trainer/consultants, including Lally Daley Hotchkiss (ND ’06), realized the work they were doing, one family or classroom at a time, couldn’t begin to meet the need. Could they use technology to scale resources to reach more people faster?
That question fit well with Hench’s interest in the development of sustainable organizations. In fact, it’s that interest in the business side of nonprofits that had led her to the Notre Dame Master of Nonprofit Administration. “It’s been a great learning experience about taking what you learn in the MNA program and putting it all into practice, from startup to marketing to product development,” Hench says. “Everything.”
Infiniteach, located in Chicago’s West Loop neighborhood, employs a team of five professionals. The company’s initial software offerings emphasize early academic and life skills, and are available as iPad downloads at Apple’s App Store. More recently, the company has shifted its focus to developing innovative ways to address issues of adult living. One line of mobile technology support will help adults with autism find, apply for and then retain jobs. “We’re taking some of the best practice autism strategies and putting them into technology,” Hench says.
The apps use video modeling, for instance, to help an individual understand what’s expected in the different aspects of their job. What is a team meeting? What are they expected to do? How can they contribute?
“Lots of visual support is another best practice autism strategy,” she says. “How do you break down an individual schedule into a visual, customizable, interactive form so that they can click on each hour of the day, see what tasks they’re supposed to do during that hour, and check them off as they go through.” Another practice is the development of sensory maps of the new workplace, marking off where there might be potential for loud noises, bright lights, or anything else that might trigger that individual’s sensory overload.
Hench has also taken on a leadership role with AAction Autism, an all-volunteer nonprofit that has partnered with schools in India, Nepal and Nigeria to provide much-needed autism resources and support. The humanitarian organization was founded by Infiniteach co-founder Christopher Flint. Hench joined the effort in 2009 when she first heard Flint speak and found herself moved to tears by his perspective on the international autism community. In the developing world, the need for autism services may seem even more immense. Through AAction, Hench, Flint and others train teachers and parents, who, in turn, train others in effective strategies for working with children with autism.
During Hench’s first trip abroad with AAction, she visited the cities of Delhi and Bangalore in India. There, she and three colleagues conducted two-day intensive training sessions for groups of 60 parents and teachers. “That very first training, when we asked at the beginning, ‘How many of you here are educators?’ everyone in both groups raised their hand. They were all teachers. Then we said, ‘How many of you here are also a parent of a child with autism?’ and, again, almost every person raised their hand.”
In the years since, she has seen that balance change as more professionals seem to be choosing to go into autism and special education in the countries AAction visits. Still, she says, in the absence of appropriate programs, many of the schools are ones started by parents who have a child with autism.
“They are the most inspiring people that I have ever met because they take their personal experiences and say, ‘I don’t want to just change life for my child, I want to change the lives of every child, every family, that has an autism diagnosis,’” Hench says. She cites the partner in Nigeria, who started her own elementary school in Lagos specifically for children with autism, expanded it to provide diagnostic services, and added on an adult vocational program.
AAction teaches a specific methodology called structured teaching training, which sets up a structured visual environment to help individuals with autism become successful and independent. “In an educational setting, this would be looking at how you use visual supports to set clear expectations for the tasks to be completed,” she says.
“A lot of individuals with autism process information better visually and more easily than they do through hearing information, so how do we provide them with visual schedules? How do we provide them with visual communication boards and tools to help support them? And then we’re looking at incorporating sensory components. How do you schedule sensory breaks into their day? There’s a plethora of strategies that all fit together to adapt the environment to meet the needs of the individual with autism,” Hench adds.
AACTION’s ultimate goal is to become sustainable. “We’d like to not just be an all-volunteer organization but to actually be an organization that has paid staff that can do this day in and day out,” Hench says, “because that’s what’s needed.” Still, she says, it’s a great time to be working in autism innovation. “We all know the field needs to take giant steps forward to help these kids become engaged adults,” she says. “How do we share information? How do we help each other? It’s very much all ships will rise right now.”