The Comeback Kid
Chrissy McNair describes her son Luke, 13, as “one of the happiest kids I’ve ever met.” He usually wakes up in a good mood and likes cracking jokes with his two brothers. He loves Top-40 music and animals, and has been riding horses since he was 3 years old. “The best word for him is passionate,” says his mother. “He passionately loves the things he loves and he passionately hates the things he hates.” But when Luke would get upset, that passion began to manifest in disturbing and even dangerous ways.
Diagnosed with autism at age 2, Luke had always struggled with getting frustrated easily when he didn’t get what he wanted or had to wait for something. But his outbursts weren’t out of the ordinary compared to other kids his age, and he could be easily redirected. By the time he was 8 years old, however, his behavior had gotten worse. Luke would bang his head on hard surfaces when he got upset. He’d occasionally hit his teachers or other adults who worked with him. But when he started getting aggressive towards his 3-year-old little brother, his parents knew they had to do something.
The McNairs sought treatment for Luke at an outpatient autism program near their home. Luke went there every day during the summer of 2008 and improved a lot. But several months later, his behavior began to take a turn for the worse again. By spring break of his third-grade year, Luke was breaking windows with his head, says Chrissy. “Every little thing set him off.”
“Things were so desperate we were considering making him a ward of the state, because our home was not safe anymore and we didn’t know what to do,” she says. A psychologist at the University of Nebraska recommended the Neurobehavioral Unit (NBU) at Kennedy Krieger.
Treatment of Last Resort
Established in the 1980s, the NBU’s unique, 16-bed inpatient program is known around the country and even abroad for providing intensive behavioral assessment and treatment for children and young adults with developmental and intellectual disabilities who have severe behavioral problems. “We’re the only very intensive inpatient program like this in the country, if not the world,” says Lee Wachtel, MD, medical director of the program. The NBU is often the last resort for families who have spent years trying different therapies and medications without success.
“Historically, it’s been a very successful program, and it’s built an excellent reputation within the field of applied behavior analysis,” says behavior analyst Sung Woo Kahng, PhD. During the last five years, 88 percent of patients discharged had reduced problem behaviors by at least 80 percent, and 84 percent had maintained those gains months later.
The NBU takes an interdisciplinary approach to treatment, relying on input from behavior analysts, psychiatrists, pediatricians, neurologists, nurses, social workers, and speech and language pathologists. “Our interdisciplinary team is outstanding because we work so well with one another, and the range of services we’re able to provide patients and their families is very comprehensive as a result,” says Louis Hagopian, PhD, program director of the NBU.
The decision to send their 9-year-old son more than 1,000 miles away from home for five months was not an easy one for the McNairs. “I’d never been away from Luke before,” says Chrissy. “But we didn’t see that we had any other options. It was either that or medicate him to the point he wasn’t himself anymore.”
In April 2009, Chrissy, her husband, Matt, and Luke arrived at Kennedy Krieger after a horrible trip from Nebraska to Maryland, during which Luke screamed and hit his parents the entire flight. “If there was any doubt that we were doing the right thing, the flight out confirmed everything,” says Chrissy. When they arrived at Kennedy Krieger, the staff greeted them and took Luke off for evaluation while his parents met with various therapists. “That first day I cried the whole day,” says Chrissy. “The staff was phenomenal. They made us feel at ease…They didn’t downplay how hard it was for us and they didn’t make pie-in-the-sky promises, but they were clearly very confident in what they do and very professional. By the time I left a few days later, I felt like he was in really good hands.”
The McNairs flew out to visit Luke almost every week, making 20 trips to Baltimore in five months, thanks to frequent-flier miles and grant money from some autism groups in Nebraska. And every night, Luke called home at bedtime to say goodnight.
The Power of Rewards
During the first several weeks of his stay, Luke’s behavior was assessed under safe conditions to identify the triggers for his problem behavior. When he arrived at the NBU, Luke was engaging in self-injurious or aggressive behaviors more than 400 times a day. The following weeks were spent eliminating those triggers and teaching him new skills, including how to more appropriately get what he wants. “We used a token economy with Luke to help him learn to control his behavior,” explains Dr. Kahng. If he did not engage in aggressive behaviors, he would earn tokens that he could trade in for access to preferred activities or outings, like being able to play a favorite video game or go out to a fast-food restaurant.
Luke’s NBU treatment team also implemented a levels system for him, explains his mother. When he was not having aggression, he was on Level 3, and was rewarded with attention and access to things he wanted. Any sign of aggression sent Luke to Level 2, where he lost access to his preferred things and did not receive a lot of positive reinforcement. If his behavior worsened to the extent that there was risk for injury, he would reach Level 1, and his parents or caregivers would have to use physical means to keep him safe. Another key to the levels system was earning rewards at several very specific times each day—for example, 10 a.m., not “after breakfast”—which appealed to Luke’s need for order and routine. This behavioral treatment, in combination with medication, greatly improved his behavior and mood.
Four years later, Chrissy says the systems implemented at Kennedy Krieger still work. “The principles of what we learned there, we still do.” Over time, the family has been able to relax the behavioral plan somewhat. They no longer need to train babysitters and everyone who works with Luke on the three-step prompting system, and Luke no longer needs to receive his rewards immediately or at very specific times. While pleased with her son’s progress, Chrissy is careful with her word choice: “He’s not cured—he’s always going to struggle with this stuff—but he’s changed."
After spending five months in intensive inpatient neurobehavioral treatment, Luke is now back to horseback riding and enjoying life again.
A Complete 180
Dr. Kahng says the McNairs are an outstanding example of the importance of training caregivers to continue the behavioral plan once a child is sent home from the NBU. “We can change the behavior on our unit, but if it doesn’t transfer to home, that’s basically a failure,” he says. “Our goal is to teach parents to be the expert in their child’s behavioral treatment. That’s a crucial role in their success.”
Chrissy says that while the decision to send Luke to Kennedy Krieger was difficult, she would do it again 100 times over given the “complete 180” she saw in Luke’s behavior. “It used to be, 90 percent of the time he was upset and 10 percent of the time he was happy—his normal self,” she says. Now, it’s reversed. A couple weeks after he left the NBU and went back home, Luke was down from 400+ aggressive behaviors a day to less than nine. These days, he has even fewer. And when he does get upset now, the episodes are much less intense than they used to be, says his mother. “He’s just a 10-times-better version of himself than he was before.”
To learn more about the Neurobehavioral Unit and treatment options, visit kennedykrieger.org/neurobehavioral-continuum.