Instead of professionals talking statistics at the eighth annual Autism Conference on Monday at the University of the Virgin Islands St. Croix campus, the presenters were two adults diagnosed with autism at an early age and a behavioral analyst with the latest research on treatment from the National Autism Center.
“We wanted to provide more heart and a human face” to the event, said Kimberly Mills, associate director of the Virgin Islands Center for Excellence in Developmental Disabilities, a program sponsor.
The UVI Great Hall was filled to capacity with parents, educators, students, medical and psychological practitioners and a few children.
Mills is a board certified behavioral analyst who reviewed articles about treatments for ASD for the National Autism Center’s National Standards Project. Mills helped evaluate research related to effective treatments for one of the largest empirical studies in the world.
Her presentation covered some of the treatments found successful during the study period from 2005 to 2012. She said Phase II of the report was published this year and outlines 14 established treatments – such as cognitive behavioral intervention, scripting, schedules, parental training, peer training and self-management.
The project also outlined 18 potential treatments as well as treatments in the testing stages.
Mills encouraged those affected by ASD to visit the organization’s website and said the report can be downloaded at www.nationalautismcenter.org/national-standards-project/.
Keynote speakers Sean Barron and Barbara Protopapa spoke of their experiences growing up with Autism Spectrum Disorder and how they developed social skills. Barron was diagnosed in 1967 only a few decades after the term autism was coined.
“Before that children were just schlepped away into mental institutions,” he said. His parents were told to expect to institutionalize him by the time he was a teenager.
At that time autism was thought to be a psychological disorder or the result of cold and distant parents, Barron said.
Protopapa was diagnosed at age 2 and didn’t have access to the limited services available at the time. She attended five inner-city schools and was placed in special education classes for middle and high school.
For more than an hour Monday, Barron and Protopapa told an attentive audience about ways to help children with ASD adapt to their world. They explained guidelines and gave examples. They gently cautioned parents not to expect perfection from themselves or their children.
Verbalizing thoughts and instructing how and what to do, rather than what not to do helps children learn about emotions, they explained.
They said teaching children with autism not to always speak what’s on their mind can be demonstrated by clarifying the difference between honesty and diplomacy.
Barron encouraged taking children into social settings so they can experience correct behavior. Whether it is the supermarket or a funeral, they learn more from experience than from lecturing, he said.
He suggested using charts and pictures to show the child beforehand what to expect of new experiences.
“Personal values, ethics and beliefs dictate moral codes a lot more than rigid boundaries,” Barron said.
Growing up, Barron said, he was very lonely and considered aloof by other children. He had motor skills problems and was bullied.
He was treated with Ritalin when he was 5 and later with a vitamin therapy that included more than 50 pills a day. Neither made any difference, he said.
“I didn’t want not to make eye contact,” he said. As a teen, he memorized lines from the television comedy, “Gilligan’s Island,” not understanding the lines were not funny repeated out of context.
Barron credits his parents “talk therapy” for long hours to retrain his brain “to appreciate many shades of gray” instead of only black and white.
“Living with autism was a very negative experience but it was somewhat a blessing,” Barron said.
The “blessing” is that he has written two books, “There’s a Boy in Here,” and with his mother, Judy, “Unwritten Rules of Social Relationships.” He is working on his third book, “A Handshake is More Powerful than a Fist,” and has been a journalist for “The Vindicator” newspaper in Youngstown, Ohio, for 14 years.
“It (autism) doesn’t negatively impact my life now,” Barron said.
Autism is a complex brain condition that affects learning, behavior, socialization, communication and motor skills. The most recent statistics from the U.S. Centers for Disease Control reports one in 68 children is affected. There is no known cure.
The conference was sponsored by VIUCEEDD and Island Therapy Solutions and will be repeated Tuesday on St. Thomas at the UVI Administration and Conference Center.