Intensive program for autistic children at SUNY Upstate has 3-year waiting list, can cost $50,000 a year.
NIcholas Rotundo, who is 6 and has severe autistic symptoms, shows a happy face to psychologist Henry Roane during a recent session at the Family Behavior Analysis Clinic at Upstate Medical University in Syracuse. It's not all laughs during these intense one-on-one meetings. Roane wears yellow arm protectors on his forearms to protect himself from Nick's habit of hard pinching.Syracuse, NY -- Sitting next to Henry Roane in a padded room could be one of the best places for Nicholas Rotundo.
Rotundo, 6, has autism. Roane is a psychologist. The room is at SUNY Upstate Medical University’s outpatient psychiatry clinic in Syracuse. For four months, Roane has been meeting Rotundo there five days a week, 90 minutes a day, trying to modify Nick’s behavior.
At home, Rotundo’s behaviors had his parents at wits’ end. His behaviors threatened his twin sister and his older sister, who also have autism. He would scream for hours. Smear feces around his room. Pinch and scratch siblings and parents. Claw himself until he bled. Urinate around the house. Eat plastic toys, dirt and mulch.
“He was so aggressive and inconsolable at the same time,” said his mother, Amy Rotundo. “And there was no one to help. We weren’t sure how much longer Nicholas could function in our home.”
In January, Roane and his wife, Heather Kadey, who were recruited by Upstate Medical University, opened the Family Behavior Analysis Clinic.
As a team, they see four children a day, working to change what is often extreme behavior using a process called applied behavior analysis. Their waiting list of 100 families projects out three years and includes families from New York City, Vermont and Connecticut.
Until Roane and Kadey get help, they will work with about 30 children a year.
The technique at the core of the clinic’s approach is not new. Versions of it are used locally in preschools.
What is new is the intense focus of Roane’s program and his intention to work with children with the most extreme behaviors. Roane’s approach demands precision, persistence and patience. To be effective it is time-consuming, and that means expensive.
The treatment should be given at least every day for 10 weeks. The extreme cases can take two to three years, at a cost of $50,000 a year.
Any progress like Roane’s runs into the sobering reality that comes with autism: Can we possibly give this kind of attention to every child who needs it?
In 2006, autism affected one of every 110 children, according to the Centers for Disease Control and Prevention. That translates into 19,000 kids in New York
between the ages of 3 and 22. Roughly 10 to 20 percent will have severe behavior disorders. Even if you could train a battalion of professionals to replicate Roane’s work here, who is going to pay for that therapy?
Those policy questions are not the worry of desperate parents looking for something.
Roane gets heartrending calls from parents pleading to see him immediately, to jump ahead on his waiting list. They tell him about the child who killed the family pet. The one who set a fire in the house. The child whom baby sitters or grandparents refuse to care for. The child they can’t take on vacation.
“We have no wiggle room to get them in sooner,” he said.
Because the long-term, intensive approach Roane uses is new in New York, it’s not yet clear how much of it will be covered by private insurers or Medicaid.
For now, Roane’s clients are covered by a mix of grants, health insurance and Medicaid, at a discounted rate. Some insurance companies won’t pay. Already, the clinic is in the red.
Focus and patience
One major goal for Nicholas is toilet training.
“Not being toilet trained as an adult is one of the chief reasons for being put in an institution,” Roane said. “No one wants to be changing diapers for someone in their 20s, especially if they’re being aggressive.”
Roane worked at the Kennedy Krieger Institute in Baltimore, then on to Atlanta and Omaha to establish similar programs in those cities. Roane’s clinic in Syracuse is the first like it in New York state, say Roane’s bosses at Upstate.
One afternoon last month, Amy Rotundo watched her son and Roane through a two-way mirror. Next to her, Kadey recorded on a computer the details of Nick’s behavior — what he responded to, how he responded and how long his response lasted. Either Nick’s mother or father, Tom Rotundo, is always present. Watching Roane work with their son, they learn how to reinforce Nick’s good behaviors and reduce his bad ones. At home, this work must continue.
They’ll have plenty of opportunities. Both parents teach in public schools. Both Nick’s siblings have autism.
“I’ve learned so much from Dr. Roane and Heather,” Amy Rotundo said. “I have a degree in special education. Knowing what I know now, I knew nothing about intervention. It makes you look at the potential of children with disabilities in a totally different way.”
Roane, 38, is lanky, 6 feet tall with a boyish tousle of brown hair. With his white T-shirt and blue scrub slacks, he wears yellow Kevlar arm protectors that extend to his elbows. Inside the padded room, he sets a kitchen timer for 20 seconds.
Nick moans and coos but is nonverbal. Roane is trying to teach him to ask for things by pointing to pictures of them. Nearby are two toys Nick likes — a toy phone and a toy guitar. Roane sits beside him at a table with a photo of each.
Throughout the session, Roane hugs, chats and tickles Nick. He asks Nick to point to the phone photo. Each time Nick does, Roane immediately praises him and gives him the phone to play with — for 20 seconds.
The immediacy of praise and the reward is key, so Nick associates it with what he just did. Roane switches photos, right and left, and finds that Nick points to the right, whichever photo is there. They work more on Nick’s ability to discriminate and to follow directions.
“Nice job, little man!” Roane says. “This is fun stuff, isn’t it?”
During the exercise, Nick pinches Roane’s leg and hand several times. Roane ignores the pinches, a strategy called extinction to eliminate a behavior.
Roane asks him to touch his nose. Nick rolls his eyes.
“Touch your nose. Touch your nose, Nick.”
As Nick stares into space, it’s hard to know what he’s thinking. Suddenly, he grabs Roane’s upper arms, grits his teeth and pinches. Roane does not flinch. Gentle but firm, he continues urging Nick to touch his nose. Nick touches his upper lip.
“Touch your nose, Nick.”
When at last he touches his nose, Roane praises Nick and gives him the guitar for 20 seconds. The room is getting hot. Nick plays with the guitar, unleashing what sounds like bad elevator music. Roane leans forward in his chair. His upper arms are marked with red crescents from Nick’s nails. He wipes his brow, a boxer between rounds.
They’ll work with Nick on touching his nose for several days, and move on only when Nick does it 80 percent of the times he’s asked in three consecutive sessions. Kadey, who is seven months pregnant, keeps track.
Toward independence
Options could be expanding in New York for parents of children with autism.
In June, both houses of the state Legislature unanimously passed a law requiring health insurers to cover the screenings, diagnosis and treatment of autism. (It has not yet been signed by the governor.)
Insurers had been denying payment for many services to children with autism, in some cases those provided by Roane, arguing that treatments were educational or behavioral, not medical.
“The default approach to most children like this has been just to put them on medication,” said Dr. Tom Welch, medical director of the Upstate Golisano Children’s Hospital and head of the Pediatrics Department at Upstate Medical University. “The idea is to try to find methods to give children and their parents a better life that don’t involve drugging them.”
As expensive as Roane’s approach is, when properly administered and reinforced by caregivers, it can save a lot over the lifetime of a child with autism, advocates say.
Savings estimates range between $1.5 million and $2 million, said Wayne W. Fisher, director at the Center for Autism Spectrum Disorders at the University of Nebraska Medical Center. Savings come, he says, from teaching a person with autism to control his behavior, to be independent enough that he isn’t institutionalized.
“We have one little boy who punches himself in the head about 40 times a minute,” Roane said. “If you don’t have treatment in place, you can imagine what that would do to someone over years.”
Even now, the New York State Education Department is overseeing at least 209 students with autism who attend institutional programs out of state, said Jane Briggs, a department spokeswoman. The average annual cost per student is $184,500, which totals almost $39 million a year. The state and the child’s home county pay for that.
Early steps
For parents of children with severe autistic symptoms, one of the hardest things is finding medical and personal care professionals to work with their child. Even dentists or barbers can be hard to come by.
The Rotundos contacted three pediatric neurologists before they found one who would see their son.
“One told us that Nick was a waste of his time,” Amy Rotundo said. “He said, ‘He’s autistic. What do you want me to do about it?’”
Neurological tests revealed that in addition to Nick’s autism, he had a seizure disorder.
After four months with Roane, many of Nick’s behaviors have improved. He can sit and wait, sometimes up to 15 minutes, without becoming agitated. His aggressive outbursts have decreased from 30 over a few hours to roughly twice a day. He no longer scratches himself until he bleeds.
Keeping detailed records of Nick’s behavior at home helps everyone involved, and is a key to applied behavioral analysis. Improvements can be so incremental and varied that only a rigorous accounting will verify any progress.
Another important piece will be training Nick’s teachers and teacher assistants to use the same techniques. Inconsistent responses to Nick’s behavior can prompt him to backslide.
Kadey, who specializes in eating problems in young children, will soon be on maternity leave. That leaves Roane and his bosses at Upstate to build a program that will help the hundreds of children like Nicholas Rotundo.
Dr. Mantosh Dewan, chair of the psychiatric department at SUNY Upstate, said the university plans to train clinicians to work under Roane and add three more rooms to make faster headway on that three-year waiting list.
Just getting Roane to Syracuse has been a big step. It’s Kadey’s hometown. The Roanes are building a house. For Amy Rotundo, that’s real progress.
“We really do need 20 Dr. Roanes,” she said. “But it starts with one clinic. Every shift in a community’s paradigm starts with that first step.”
Contact Dave Tobin at dtobin@syracuse.com or 470-3277.