By Jeff Kazmierski – Copy Editor
Asperger’s Syndrome, or AS, is a common condition part of a larger subset of developmental disorders collectively known as the autism spectrum. Individuals who have AS are often very intelligent and have focused and narrowly defined interests, but have difficulty understanding and interpreting social cues, such as tone of voice and body language. Often they seem aloof, uncaring or even rude, when in reality they simply don’t understand. They must be taught the social skills that their typically developing peers learn naturally, which can be a laborious process.
For parents of children with AS and autism spectrum disorders, obtaining educational and developmental services for their children can become full-time jobs. They spend a lot of time and resources tracking down doctors, specialists and counselors that can help their children develop the social skills and work habits that parents of unaffected children often take for granted.
But for many of these parents, an even bigger worry looms on the horizon. After their children graduate from high school, they legally become adults and are no longer eligible to receive the services their parents obtained during their school years. Those who are capable of living on their own often find themselves thrust into a world of social rules they barely understand.
At a recent Autism Action Partnership conference held at the UNO Scott Conference Center, UNO professor of industrial psychology Troy Romero and graduate student Catelyn Buck discussed “Transitions,” a pilot program developed at UNO to help young adults with AS learn to function in the social world.
Romero began the discussion by posing the question: what does his work with industrial psychology have to do with autism?
“Not much,” Romero said. “I thought it would be interesting to cross over some of the leadership development and training in psychology and work with Asperger’s.”
Part of the program’s plan is to use industrial psychology and management models to teach young adults with autism and related disorders.
Buck, a second-year graduate student at UNO, first became interested in autism as part of her required research. Her early work was with younger children with autism. In the interests of expanding her range of knowledge, she took the opportunity to work with Romero in his program.
Romero first became interested in autism when his cousin was diagnosed with AS. Like many people, he knew about autism from an academic sense but hadn’t experienced it yet in a personal sense.
“There’s a stigma out there if you don’t know much about it,” he said. “It’s still out there but there’s a lot of money being spent on programs. The Institute for Community Inclusion was just awarded a $50-million grant… to get people into the work force.”
A large amount of money being spent on a new initiative called “Think College,” Romero said, which is designated for students with high-functioning autism and AS, he said.
Despite the need, there is a lot of negative sentiment toward the program. Romero illustrated this by reading some negative comments posted to an Internet article. One of the commentors called it a waste of taxpayer money.
The comments are disheartening, he said, but it “reinforces why Caitlin and I are doing the program that we’re doing.”
Education in any form, he said, is good. Research shows that just taking college classes is empowering for people with AS, and while most won’t graduate with a degree, most will find employment.
In addition, exposure to different situations is good for people who don’t have AS.
“It expands our ability to empathize with others,” Romero said. “And it gives us a better idea of where we are on the spectrum.”
It also furthers the need for those programs, as individuals come into contact with less socially-aware peers and realize how under-developed their own skills really are.
Romero created the Transitions program partly in response to his cousin’s experiences and partly in response to the great need for such a program in Nebraska. Though many services are delivered in Omaha, Nebraska is 49th in the nation in terms of services for AS and autism spectrum disorders, he said.
“[There was a] need to help kids who are suddenly stuck with no services there for them, and no one to pay for them,” Romero said. “The rules are different when they become adults. There are no more free services, and the Americans with Disabilities Act provides for accommodations but no guarantees.”
To fill the need, Romero worked with UNO and the Monroe-Meyer Institute to develop the program.
Following the short film “Intricate Minds – Understanding Classmates with Asperger’s Syndrome” (which illustrated some of the population Romero and Buck are working with), Buck gave an overview of the program.
Transitions is geared toward young adults aged 18-24. A group of volunteers from both the AS community and typical student peers are placed together in normal, everyday environments. Open communication in a natural environment, flexibility and compromise are all part of the program.
“There is no clear path to adulthood,” Buck said. “We have participants who work, some who want to work but don’t know how to go about it, some live at home, some have roommates and some live independently.”
What is common among them is that they all went to high school, and at some time during high school they received services.
Social skills services often focus on teaching rote skills. This program aims to generalize those skills, which means they focus on teaching the participants how to apply the skills they learned to different situations.
“You have this bag of skills,” Buck said. “Now let’s use them in a new context.”
The expectations of the adult world are different, so in the program they practice cognitive thinking and social interaction.
The program is in its first year of operation, and Romero and Buck are constantly looking for ways to improve it.
“We don’t want a cookie-cutter program,” Buck said. “We want to make it individual. Every year or every semester it will be a little bit different.”
The program is free and open to any volunteers, whether they’re in college or not. It operates strictly on a voluntary basis – no one is required to join if they don’t want to. Participants must want to join and demonstrate a desire to increase their level of autonomy. The typical peers who work with them must be committed and interested in the program since it operates well beyond the scope of a single semester.
Perhaps more importantly, volunteers must have good social skills themselves. They are more selective of the peers, Buck said, because if they don’t have good social skills themselves, they aren’t likely to be able to model them.
The group meets three times each month. Two meetings are structured or group-led meetings, with focused agendas and teaching goals. The third meeting is unstructured, where the participants get to choose an activity such as going to an orchestra concert, dinner or hockey game. The participants make the decisions and the experience is incorporated into the lesson plan.
So far, the results have been good. Parents are often the primary source of feedback, and many have sent messages thanking Romero and Buck for their work with their children.
“One of the neat things about working with kids on the spectrum,” Buck said, “is everybody is different.”