Gait Way: Road home for lost boys?

Sam Knight isn’t lost — at least not in the traditional sense. In fact, his mother Jennifer Knight has gone to great lengths to keep tabs on her boy, including installing a home security system that goes off whenever he tries to escape.

But that doesn’t keep her from calling her autistic son, and all the kids like him, “lost boys.” Lost because they’re entering adolescence with a condition that responds best to early intervention.

And lost because they are on the cusp of an epidemic that’s threatening to overwhelm the schools, hospitals and treatment centers that serve them. According to the Autism Society of America, the prevalence of autism spectrum disorders might be as high as 1 in 150 births. Other studies have found between two and six autistic children in every 1,000 births. Diagnoses of autism have risen dramatically since the 1980s, when milder forms like Asperger Syndrome were formally recognized in psychiatric texts.

Sam is one of the millions of children who have received an autism diagnosis in the last two decades. Services providers said the lack of service options during adolescence is particularly hard on parents of maturing autistic kids who can no longer physically control their unpredictable offspring. In public places and in schools, the behavioral problems associated with autism become increasingly hard to manage during their teenage years.

Autism is a spectrum disorder, which means that people classified as such demonstrate a wide range of abilities and deficits. Autistics on the high functioning end of the scale, including those with Asperger’s, can pursue college, careers, family and normal lives. Then there are those like Sam with limited verbal communication skills and serious behavioral issues.

Sam, who is 12, will need some kind of support for the rest of his life, Knight said. And when he was younger, support services were fairly easy to come by. His mother moved him and his twin sister Alden to Winston-Salem from England to enroll Sam in the ABC School of North Carolina, a facility that specializes in educating autistic children. He was one of the first students.

When Knight could no longer afford tuition at the ABC School, she pulled her son out and enrolled him in public school. But as he got older, his behavioral issues got worse. Car trips became nightmares in which the thrashing Sam would kick at the doors, seats, driver and other passengers, sometimes injuring himself and others.

Last summer, when he was 11, Sam bottomed out. Knight tried desperately to secure the services she needed to keep her son at home, to no avail. Instead she placed him in the state run PATH program, an inpatient treatment center for older autistic children in crisis.

He stayed for two months, until his behavior stabilized, and when he returned he was welcomed by two full-time tutors provided by CenterPoint, Forsyth County’s mental health provider.

This August, Sam moved in to Gait Way, a pilot residential program in Chapel Hill for adolescents with autism. It’s the first of its kind in the state, and its residents so far consist of Sam, another boy and a four-person therapeutic staff. The program, which can be replicated around the state, is an effort to fill the autism service gap that opens up during adolescence.
To send him off, Knight organized a party around the theme “Green Eggs and Sam,” in honor of Sam’s favorite writer, Dr. Seuss. She filled the dining room appropriately, with deviled eggs dyed green, green cupcakes topped with gummy eggs and sugar eggs on pretzel squares.

During the height of the festivities, Sam stayed in a basement room with his tutors and played on the computer. Children tossed water balloons in the backyard as their parents looked on from the porch.

Sam stayed away, avoiding the disruption of his normal night routine that might trigger a tantrum. Like a lot of autistic children, Sam seemed to be developing normally for the first months of his life. He hit all the early developmental benchmarks before his twin sister Alden, Knight said. Things were going so smoothly, in fact, that Knight mistook the first symptoms of autism for signs that her infant son was gifted. He became obsessed with patterns and gradually receded into himself. By the time his behavior became disturbing enough to warrant professional evaluation, Sam’s responses to external stimuli had almost completely ceased.

Knight said those early years after diagnosis were like a sprint. If she could secure enough early intervention, she thought, her son might have a chance at a normal life. As the years passed and the extent of Sam’s disability became apparent, the sprint became a marathon, the goals receded into the distance and the number of services available to her growing child diminished.

Sam’s disability has dictated how his family members live their lives, from where they live to who comes over to Alden’s slumber parties. The 12-year-old rages throughout the night, screaming and banging on the walls, an experience that can frighten his sister’s friends.

Knight said she planned to sell the house, alarms and all, after Sam moved into his new home in Chapel Hill. When she does she'll leave behind Sam’s skylight, the metal frame of a screen door that lost its glass during an episode. On the evening of his party, the house was still home, and Sam’s skylight was decorated in keeping with the theme, in green crepe streamers.