By age 14, Billy Nacmias had become obese, obstinate and prone to such violent outbursts that he pushed a teacher down a flight of stairs and was expelled from school.
Billy has autism, but he had not always been so contentious. His behavior had grown increasingly unstable in recent years, after being physically beaten by another teacher at his Queens, N.Y., school. He began overeating and acting out. He became easily enraged and went on binges destroying his family’s home. Billy’s parents sued the city school district after their son’s maltreatment, and as part of their settlement, they were offered their choice of institutions, on the government’s dime, to help him.
Their choices were limited: Most residential treatment centers are state-run forensic psych facilities — sometimes referred to as “lock-ins,” because residents are locked inside the premises. The Nacmiases were reluctant to confine their young son to such an institution. They had one other option: a different kind of facility, called The Center for Discovery, about 100 miles away, in Monticello, N.Y. The private not-for-profit is the largest residential treatment center of its kind in New York State, reserved for the care and treatment of those with significant disabilities, complex medical conditions and autism spectrum disorders.
The Center, located in the Catskill Mountains, feels more like a utopia than it does a last resort. On a bright morning in early fall, the campus had the air of a tony New England prep school or a mountaintop yoga retreat — not, God forbid, an institution. Spread out over three campuses and 1,500 acres of rolling hills wound with walkways and lovingly tended gardens, the facility abounds with horses, pigs, chickens and cows. The on-site cafe serves freshly baked goods made from hyperlocal organic ingredients and offers an array of nut-based milks. Students here — some 400 adults and children with significant physical or developmental disabilities — feed the farm animals as well as the rabbits, rascal ferrets, snakes and frogs that live in the Center’s “Imaginarium.” Residents also work the farm, swim in the therapeutic pool, play fantasy football in the “Learning Center,” and volunteer at the nearby fire department. In the winter, they zip special coats around their wheelchairs so they can still go outside safely.
The activities are essential to The Center’s holistic — or “offbeat,” as Patrick Dollard, The Center’s boisterous president and CEO, puts it — approach to treatment. While the medical establishment tends to adhere to a “broken brain” theory of developmental disability, which focuses primarily on neurological problems and behavior-based therapies, the Monticello center aims to treat the entire individual. The idea is that a person’s physical, emotional and psychological health, along with his or her environment, are one interconnected whole. At The Center for Discovery, buildings conform to strict eco-friendly regulations, and the residents’ diets are stripped of artificial dyes, flavorings and preservatives. Outdoor and indoor environments, including those that foster interaction with animals, are specifically designed to promote learning and calmness by decreasing children’s stress responses. Kids eat healthily, exercise and are, above all, encouraged to express themselves and to be happy.
The place is so quiet, calm and bright that it’s hard to believe it is a counterpart to the traditional psychiatric treatment center, or lock-in. That phrase carries especially dark connotations in New York State, where conditions at such facilities as the Willowbrook State School on Staten Island were so egregious — among the offenses were overcrowding, sexual abuse and unethical medical studies — that they spawned a federal investigation and civil rights legislation protecting the rights of the disabled. (The Center for Discovery took in some of Willowbrook’s residents when the notorious facility closed in 1987.)
Billy arrived at The Center in 2012. At the time, he would eat only pizza and blocks of mozzarella cheese, and he required two full-time aides trained in special tactics to keep him from injuring himself or his helpers. In videos taken during those early days, he angrily pushes away a plate of organic fish and rice, demanding pizza again and again, pounding his hands on the table. On a walk, he attempts to grab one of the aides and shove him forcefully.
Less than a year later, videos show a boy transformed. He lost 60 pounds; he looks years younger. He came around to organic food. He lists his favorite chores out loud, with a new spark in his eye and color in his cheeks. His incessant demands for junk food have been replaced by an exuberant enumeration of his favorite activities: “Cooking, zoo jobs, feeding the rabbits and Zumba!” he says.
Billy is, by all appearances, a far healthier kid. He is one of The Center’s most recent success stories, but the path of his evolution is not uncommon. Dollard says he’s spent the last three decades witnessing similar transformations. “If you create a safe environment, good things happen. They grow. They get better. They get more confident. I’ve seen it happen,” Dollard says. “I’ll have somebody I’ve known for 20 years, and I see them and suddenly they’re better and I say, ‘Wow! I wish I could prove that!’”
What Dollard means is that he wishes he had the hard data to show that The Center’s treatment strategies result in improvements in health: lower anxiety, a healthier immune system and less frequent bouts of rage. And for the last year and a half, The Center has been working to collect that data. With a $10 million grant from the National Science Foundation and in partnership with the MIT Media Lab, Harvard University and the Georgia Institute of Technology, The Center has been collaborating on formal research on autism treatment.
The nucleus of The Center’s research efforts resides in its Big Barn Discovery School, the first residential campus in New York State specifically designed for students with autism spectrum disorders. As its name suggests, the school is housed in and adjacent to a converted barn — once a large dairy farm that sent products to New York City — located on a chunk of land that The Center bought nearly a decade ago in neighboring Hurleyville, N.Y. The barn itself is surrounded by chicken coops built into old, multicolored gypsy wagons. Kids gather 200 eggs a day from the coops, which are then distributed to the on-site dining areas and also handed out to neighboring community members as part of The Center’s agriculture program. Within the barn are performance and event spaces, which host proms and graduations, and this spring, a production of “A Midsummer Night’s Dream.”
Down a long wing are a series of classrooms outfitted with state-of-the-art technology — cameras, computers and biometric sensors — to monitor and measure virtually everything that goes on with each student within each room. Researchers are interested in studying how children with autism interact and respond to their environment; they’re also looking for the potential triggers of kids’ agitation and dysfunctional behaviors. For example, what are the conditions — both internally and externally — before, during and after an outburst? Are they correlative or is there something more subtle at play?
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At the end of the hall in the wing is the laboratory space, where data on physiological responses are gathered. Here, technicians and doctors monitor and record in-the-moment health measures such as heart rate and electrodermal activity via wearable sensors like wristbands. Researchers also track longer-term indicators of overall health, including the time of the student’s last bowel movement, hours of nightly sleep, food and liquid intake, exercise and duration. Using these data from the classrooms and lab, the consortium of researchers are hoping to quantify exactly how children with autism are responding to The Center’s interventions.
“All of these perspectives working collectively in this space — that’s how we’re going to have potential to have a substantive impact on public health,” says Lisa A. Marsch, director of the Center for Technology and Behavioral Health at Dartmouth College.
The latest numbers suggest that the target population is growing. The Centers for Disease Control and Prevention estimates that roughly 1 in 88 American children now have an autism spectrum disorder, up from 1 in 500 in 1995. Today, at The Center for Discovery, 60 percent of the residents comprise children with autism spectrum disorders, up from 40 percent just five years ago.
Ultimately, the impact of the research being done at The Center could extend beyond autism, and there is hope that this holistic approach could be applicable to age-related illnesses like dementia as well. The end goal, however — Dollard and others’ version of utopia — is to render facilities like this one unnecessary. With the right treatment and assistance, they say, people with disabilities may be able to live full lives in their own communities. “We want to eradicate the need for residential care altogether,” explains The Center’s associate executive director, Terry Hamlin, with a smile. “So that no one is locked away.”
Correction: February 20, 2014
This article has been amended throughout to correct several small errors of fact.