“Autism? That’s so rare that you’ll probably never see a case of it in your career,” Susan Wilczynski was told in graduate school. And yet Ball State’s Plassman Family Distinguished Professor of Special Education and Applied Behavior Analysis diagnosed her first case before she earned her doctorate in 1998.
The lack of information about autism at the time made Wilczynski feel helpless in dealing with the boy’s parents. “I did everything I could to try to be there for them,” she recalls, “but I was petrified at the fact that they could ask about the best course of treatment and I didn’t really have a great answer for them.”
The parents saw Wilczynski’s desire to help and invited her to learn as they brought in experts from California to teach them how to deal with their son’s autism.
“That’s how I got involved in autism. Not because I understood the population or loved the population but because I thought I can never let a family down again to the same extent,” she explains. “And as I got to know more about people on the spectrum and their families and their teachers I was amazed – I was amazed at their resilience, I was amazed at the challenges they faced but also the courage they often brought to it. And so I decided this was a population I wanted to work with.”
Wilczynski’s drive to assist people with autism and their families led to her to direct the National Autism Center. “My primary focus was on identifying treatments that work. Once I had done that, I looked around and realized, ‘So what? Who cares if we’ve identified these treatments if we don’t have enough people in the field to deliver the treatments?’ So I wanted to shift my career back to academia so that I could focus on training future behavior analysts and other professionals who know how to treat autism effectively.”
Wilczynski’s goal is progressing nicely. Ball State’s master’s program in applied behavior analysis with an emphasis in autism has more than 950 students. The program is helping to meet a growing need. The condition once considered rare is now being seen much more often – one in 68 people is now diagnosed with autism spectrum disorder (ASD).
“We now have many people on the spectrum, and it is a huge financial drain on the families. It is an incredible challenge for school systems,” Wilczynski says. “But as they get older and the competitive employment rate is only 5-7 percent, it will have a huge economic impact. If you take that one in 68 and multiply it by the number of people in this country and then calculate that 93 to 95 percent of them won’t have jobs, what do you think that’s going to do to communities? So we have to get better answers.”
Wilczynski makes sure that the resources she produces are practical, both in scheduling and in content. “We have to have answers for families, for teachers, and for others that make getting access to resources easier – that work better for their schedules, that focus on the skills the kids need to be able to demonstrate in real-world settings. And that’s where we like to focus our energies,” she says.
To help find those answers, Ball State created the Center for Autism Spectrum Disorders. Supported by donations from Leland Boren and the Plassman family, the center uses research to design and administer programs for people with autism, their parents, and their teachers.
Parent and Teacher Training
Wilczynski saw that traditional training programs wouldn’t fit into families’ hectic schedules. “These parents’ lives – they’re running their kids from speech language pathology to the doctor and trying to get them some social interaction with other kids and sometimes dealing with severe behavior problems. Where do you fit in the training? Having a professional that’s available only from 9 to 5 often doesn’t work. And yet they are sometimes the most desperate for the services.”
With this in mind, she designed web-based training programs for parents and teachers. The participants watch videos, receive handouts and other information, and take quizzes and pre- and post-tests, all online at their convenience. Currently, to test its usefulness, half of the group also receives coaching and feedback. This is done by having the participants take videos of themselves interacting with the person with autism and uploading the video. The trainers watch the videos and provide feedback. After the parent or teacher has reviewed the feedback, he or she meets with a trainer online through GoToMeeting for coaching on specific areas of difficulty.
“They have access to somebody, even if it’s not somebody local,” Wilczynski says. “My goal from the beginning was to make sure treatment was equally accessible for people in rural communities as it was for people in major cities.” That’s why Wilczynski decided to use this format. Participants can complete the web-based training as their schedules permit and the only events that need to be scheduled are the GoToMeeting sessions, which are offered both during the day and in the evening.
“It maximizes our flexibility for families,” Wilczynski says. “And if we can show that this is a cost-effective method that is increasing knowledge and skill acquisition, we think this is the way to go.”
Summer break presents a special challenge to children with autism, which is why Ball State’s Center for Autism Spectrum Disorders started the Autism Summer Camp under the leadership of David McIntosh, David and Joanna Meeks Distinguished Professor of Special Education.
“Kids acquire skills over the course of the school year, and then they have summer break. Your average kids lose some skills, but within two weeks they’re back to where they were,” Wilczynski says. “But for kids with autism, it often takes months and months before they’re back to where they ended the previous school year. This camp allows the kids to at least maintain the skills that they had.”
Each person with ASD is different, and “one size fits all” approaches to treatment often fail. “Based on the information we have right now, I think the most important service is applied behavior analysis,” Wilczynski says. This systematic approach known as ABA involves studying an individual’s behaviors (such as those used in talking, playing, or studying) and then structuring the person’s environment so that he or she is more likely to be successful.
Examples range from teaching a child how to ask for a favorite soda or to approach other children on the playground to teaching someone getting a first job how to use a copier or file documents. Even preschool lessons have far-reaching impact.
“The earlier you can diagnose kids, the earlier you can intervene and the better their outcomes are,” Wilczynski says. “When you’re 4 years old and you learn how to play with other kids, you’re developing the social skills, the give and take that is necessary to be successful in almost every workforce. So it might involve honing the skill as they get older, but they’re getting that foundational skill as early as possible and then they’re much more likely to be successful down the road.”
The workforce programs are led by Wilczynski and Assistant Professor of Applied Behavior Analysis Jen Cullen. They use ABA as a foundation for teaching skills but also use a self-determined model. In this way, individuals with ASD can learn to find the right jobs that match their skills and preferences. Wilczynski and Cullen work closely with McIntosh and Assistant Professor of Educational Psychology Maria Hernandez Finch, who conduct research on employment assessment.
All of the programs offered by the Center for Autism Spectrum Disorders – parent and teacher training, summer camp, job coaching – have the same goal: to help people with autism express themselves, relate to others, and function more effectively in society.
Wilczynski will never again be in the position of not knowing what to tell a family whose child has been diagnosed with ASD. She says, “As I acquired skills so that I knew what to do to make a difference, it was the great joy of my life: learning how to teach kids to talk, to play, to hug their parents before they go to bed at night, to go trick-or-treating, and every other little thing that kids do.”