By Kristin E. Etu, Associate Director of College Communications, Canisius University
According to the Centers for Disease Control and Prevention (CDC), one in 68 children in the United States is diagnosed with autism spectrum disorder (ASD), marking a 123 percent increase since 2002.
“ASD consists of core symptoms including social impairments, and narrow, repetitive behaviors and interests that severely interfere with children’s daily functioning,” explains Marcus L. Thomeer, Ph.D, who co-founded and co-directs the Institute for Autism Research (IAR) at Canisius University with colleague, Christopher Lopata, Psy.D.
There is no known cure for ASD, but children can receive the attention and treatment they need to improve their social functioning through the Institute for Autism Research.
The IAR has already made a difference for nearly 400 Western New York children and their families. Established in 2009, the Institute is dedicated to better understanding ASD and enhancing the lives of affected children. The IAR has developed several effective treatment programs that have garnered the attention of the clinical and research communities and the national media. Most renowned is summerMAX, one of the first comprehensive treatment research programs proven effective for high-functioning children with ASD.
The summerMAX program consists of five active treatment components including social skill groups, therapeutic activities, face and voice emotion recognition instruction, behavioral reinforcement system, and parent training. For the children, the five-week long summerMAX program is just like summer camp. They participate in engaging group activities, entertaining games, field trips to local attractions and theme parks, and swimming twice a week.
Throughout the day, summerMAX participants earn or lose points based on their participation and use of social skills. There are no breaks from social instruction, not even at lunch. Participants “earn” their way to field trips and other rewards based on point levels.
“The high level of intensity of the summerMAX program is necessary because we are trying to move the kids a good distance in a five-week [span],” says Lopata.
Lopata and Thomeer have developed strategies to specifically treat ASD symptoms, that are incorporated into the program’s structured activities. Members of the research team, many of whom are undergraduate and graduate students, implement the strategies. The researchers then assess the impact to determine which ones result in the greatest gains among the children.
The children have so much fun that they don’t realize they are in treatment. “We want the kids to have fun but we want to make sure they are learning something and that the program is changing their behaviors in their day-to-day lives,” says Thomeer.
According to results from three randomized trials, children who participate in summerMAX consistently show vast improvements in their understanding and use of social and communication skills compared to those who do not receive treatment. They also maintain their social gains after completing the program.
The IAR’s findings are the foundation for its current research testing the effectiveness of its treatment program in school settings (schoolMAX). A historic $3.4 million research grant from the U.S. Department of Education Institute of Education Sciences is supporting a four-year study. Preliminary research on the school program conducted in several local public schools has shown much promise. In addition, the U.S. Department of Defense Autism Research Program has awarded the Institute a four-year, $1.3 million grant to study the effectiveness of an outpatient version of the program (MAXout). If proven effective, these new treatment programs will enable the IAR to expand its programs for children and parents, who need accessible treatment options.
Most recently, the results of a randomized clinical trial found summerMAX to be effective in a community-based setting. This was an important extension of the prior summerMAX clinical trials, as the results indicated that community providers can effectively conduct the program, and that children show significant gains.
But parents of children with ASD say that the greatest reward is watching their sons and daughters grow into understanding and social individuals. “Prior to attending summerMAX, when someone entered the room, Owen didn’t acknowledge the person, even when he or she said ‘hello,’” says Stacy Klein, Owen’s mother. “This program has helped Owen (now 13) relate to his peers – emotionally.” Klein adds that Owen will ask family members about their day – something he would never do before attending summerMAX. Klein has also seen a reduction in Owen’s symptoms of narrow, obsessive interests.
Now 14, Corinne Marciniak is also flourishing. She swims on her local varsity swim team as an eighth grader and has been a member of a local synchronized swim team for four years.
“Corinne uses the skills she learned at summerMAX to be a productive, positive member of the synchronized swim team,” says Renee Marciniak, Corrine’s mother. “She also has friends on the team. Corinne facilitated those relationships all on her own.”
Such testimonials are credit to the mission of IAR. “We need to give these kids an opportunity to attend school, go to college, to find meaningful work as adults, to have a family and ultimately not be so isolated from society,” says Thomeer. “All our efforts are undertaken with this in mind – to improve the lives of children with autism.”
All indications are that the Institute for Autism Research is making significant progress toward that goal.
For more information regarding the IAR at Canisius University, please call (716) 888-2800 or visit canisius.edu/iar.