As national estimates of autism rise, a promising research project at Marquette University is helping bright kids with the social disability better navigate the perilous teen years.
The Marquette research team also is gathering new evidence that teaching these kids the subtle, unwritten rules of social interaction may lead to neurological changes in their brains. After kids finish the program, tests show increases in brain activity in areas that process social information, such as facial expressions, and in areas that initiate social behavior, such as making eye contact.
Researchers know that adolescence brings a burst of brain development, so it's not too late for highly intelligent teens with an autism spectrum disorder to learn skills that can help them make and keep friends, according to Amy Vaughan Van Hecke, assistant professor of psychology and director of the Marquette Autism Clinic and Project, which houses the PEERS social skills program.
Results of the neurological research so far are consistent in teens who have completed the program, Van Hecke said.
"We see significant increases in brain activity in areas that support both the understanding and initiation of social behavior," she said.
The federal Centers for Disease Control and Prevention last week raised its estimate of autism prevalence to 1 in 88 children, up from 1 in 110 children two years ago. The causes of autism are unknown, though older adults having children has been established as one risk factor for the disorder, in which the brain handles information differently.
A child with autism may do very well academically but not know how to talk on the phone.
Autism spectrum disorders - classic autism, Asperger's syndrome and atypical autism - are about five times more common among boys than girls. Symptoms include impaired social interaction and communication, repetitive patterns of behavior such as rocking, and obsessive interests, though not all of these symptoms are required for a diagnosis.
Noah Stone, an eighth-grader at A.E. Burdick School in Milwaukee, has a nonverbal learning disability that's similar to Asperger's syndrome.
The 14-year-old felt isolated before joining the first PEERS group at Marquette for youths ages 11 to 16. Since taking PEERS classes in fall 2010, he's more outgoing, better understands the subtleties of friendship and isn't afraid to jump into conversations with other kids at school, he said.
"You can't live in your room all your life, and you can't let your disability get the best of you," Noah said. "We are social creatures."
Teens with normal to high intelligence benefit greatly from learning the social skills PEERS teaches, Van Hecke said.
They know they're different and can sense when other kids don't accept them, she said. That awareness makes them prone to anxiety and depression because "fitting in" is crucial during the teen years. Lower-functioning kids may not be aware they're being excluded, so they may not feel the pain of rejection as keenly as higher-functioning kids, she said.
"People who have friends live longer and have better health," Van Hecke said. "Social connectedness is an integral part of our being."
Kids with a social disability have difficulty with friendships because they see social situations as black and white, and don't intuitively know how to enter a conversation - to listen and then add something - or how to politely leave a conversation.
They may try to turn the conversation to their own interests, or just walk away if the topic doesn't suit them.
They also have trouble making eye contact and reading facial expressions, body language and tone of voice so that they can respond appropriately, and don't intuitively know how close to stand to the person they're talking with, Van Hecke said.
A large percentage of kids with high-functioning autism avoid social interactions altogether because of past failures, she said.
Starting this fall, a new PEERS program at Marquette will focus on helping young adults with autism disorders with dating, employment and independent-living skills. The first semester of that program already is filled with 10 young adults, ages 18 to 24, Van Hecke said.
Only a small number of students are accepted into the 14-week PEERS program for teens each semester. The program has limited resources, and a grant from the Autism Society of Southeastern Wisconsin is its only funding source beyond Marquette's support. PEERS is offered at no cost but requires parent involvement. About 40 teens have participated since the project started in fall 2010.
Eventually, the PEERS program could be used in schools, but Van Hecke said she won't advocate for that until she sees evidence it can work in that setting, as parental involvement is crucial to success.
Other universities around the country are using the PEERS program developed by the University of California, Los Angeles. But Marquette is the first PEERS site to use sophisticated brain imaging to study whether neurological changes occur in the brain after the teens participate in the program, which meets one evening a week on campus, Van Hecke said.
Clay Mortl of New Berlin completed the program last semester. He has Asperger's syndrome.
"I was challenged in social skills, making friends," Clay said, describing himself pre-PEERS. "What I learned at PEERS is beginning to help me."
"You're interacting now without thinking about it," Clay's dad, Jim, told him.
During an interview last week at Clay's school, New Berlin West, the high school freshman got an unexpected chance to put what he learned into action when a tearful little girl asked for help because a classroom she was supposed to go to for a musical rehearsal was locked.
"Don't worry, we'll get you in there," Clay told her.
Before PEERS, his dad said, Clay would have shied away from the situation because he didn't know what to expect.
"PEERS helped him take the confusion and scared feeling out of being in a conversation," said Jim Mortl, who attended separate PEERS sessions for parents.
Jeff Karst, one of five Marquette graduate students involved with the program, is studying whether parents and other family members of teens may benefit from the PEERS program, too.
In the PEERS parent sessions, parents compare notes on social issues that challenge their kids. They get the same information as their kids so they can reinforce lessons and help the kids with homework, such as calling someone on the phone that they don't know well.
"We've seen significant changes in Clay, especially with school," Jim Mortl said. "School is the ultimate social situation."
Clay, who has taken on challenging acting roles in school plays over the past year and has a keen interest in politics and history, hopes to someday be an author or playwright.
Before PEERS, "if he didn't 'get it,' he gave up," said his mom, Beth.
Now, "he's willing to try. He doesn't get as upset because he has gained the ability to get perspective."
Learning to listen
Noah said he has learned to listen, and not just talk about what interests him. "I definitely try to think about what I can add to the conversation. . . . It's easier for me to be around people."
Noah's dad, Bill, has noticed big changes. "You weren't as comfortable before with the back and forth," he told Noah.
"One of Noah's teachers, his forensics coach, said she's seen so much growth in him, and just watching him is inspiring for her as a teacher," said his mom, Mary.
"When a child gets a diagnosis, it's scary for the parent and the child," she said. "But what our kids don't intuitively know, they can learn. The PEERS program gives parents hope. There are successful interventions out there."
Noah said he hopes to inspire other kids "to know there's something out there to help them with social situations, and to not give up."
Focus on autism
Autism will be in the spotlight this week in Milwaukee.
Several Milwaukee landmarks will be bathed in blue light Monday night as part of a "Light it Up Blue" with Autism Speaks campaign for World Autism Awareness Day, which is Monday.
And Thursday, the Milwaukee Center for Independence will host a screening of "I am Beautiful," a documentary on the life of Ariel Keane, a Shorewood teen with autism. The film, produced by University of Wisconsin-Milwaukee graduate film student ShuLing Hsieh, will be shown from 6 to 7:30 p.m. at the Milwaukee Center for Independence Conference Center, 2020 W. Wells. St.
Keane and her parents, Mark and Linda Keane, and autism consultant Mary Graczyk-McMullen, will speak briefly during the event.
The following local landmarks literally will shine a spotlight on autism Monday: Miller Park (8 p.m. to midnight), the Marquette Interchange, Pettit National Ice Center, the Mitchell Park Domes, West Allis City Hall and Milwaukee Court of Honor (monuments on W. Wisconsin Ave.)
The Pettit National Ice Center will glow blue every night in April as part of the autism awareness campaign.