Parents Take Over: Two Moms Make a Difference for Autistic Kids

It's a Tuesday morning in September, and all around the New York Center for Autism Charter School [1], teacher-student pairs are working intently, each on a different task. A five-year-old boy calls out "monkey," "cat," "bird" as his instructor flashes cards with pictures. A nonverbal nine-year-old boy arranges numbers in sequence as his instructor watches. A six-year-old girl at an upright piano plays Ode to Joy.

Timers buzz constantly; each child has one to signal the end of every activity. Teachers whoop "Good job!" and "Way to go!" then hand a student a treat, such as goldfish crackers, a sticker, or a token. Students collect the tokens and redeem them for television time or a spin on a Hot Wheels tricycle. Almost imperceptibly, the instructor marks the child's chart: Did he or she name six animals? Check. Then the pair moves on to another task: Identify shapes, tie shoes, toast a bagel, talk in sentences, practice eye contact, or perform any of a dozen other skills detailed in the child's curriculum. And always, there's the buzzer, the clipboard, and the reward.

Many public schools claim to incorporate applied behavior analysis methods into instruction for autistic students. (See "Overcoming Autism: Public Schools Deal with a Growing Problem. [2]") This charter school, opened in 2005 in Manhattan's Spanish Harlem, shows how ABA is supposed to be done, why it's so difficult to implement broadly, and what it can accomplish. A child who barely uttered a word two years ago now speaks in clear three- to five-word sentences. Kids who banged noisily the first time they sat at the piano were able to play songs at last spring's school recital. An eleven-year-old boy who came to the school kicking, screaming, and throwing chairs is slowly learning to recognize the triggers of such outbursts, usually frustration or fatigue, and to ask for a break.

"His language has blossomed," says this student's dad. "The school is getting him to the point where he can modulate himself. If someone had told me when he was five that at eleven he'd be performing at this level, I would have been much more relieved."

The school, chartered in 2005, was founded by Laura Slatkin and Ilene Lainer, each the mother of a son with autism. Affluent and well connected, they were appalled at the scarcity of autism placements in Manhattan. They wanted to build a school that reflected the best practices in autism education and became convinced that doing so meant adopting ABA. They also envisioned a program woven into the fabric of the community.

"We wanted to work within the public system to change the way we're delivering public education to children with autism, to raise the bar," explains Lainer, the school's founding board president and now executive director of the New York Center for Autism, the school's parent organization. "We wanted high-quality services delivered in an environment where typically developing children are also found, not in a segregated school."

The women also wanted the school to teach parents how to work -- and live -- with their kids. "Educating a child with autism doesn't end at three in the afternoon and start at nine in the morning," Lainer points out. "It's twenty-four hours a day."

Lainer and Slatkin got everything they dreamed of, except a placement for their kids. The school chooses students by lottery, and neither son got in. The boys attend private ABA schools.

The charter school is approved for twenty-eight moderately to severely autistic students, ages 5-14, and will reach capacity this year. Each classroom has four students grouped roughly by ability, and four instructors: two entry-level instructors, a lead instructor, and a certified teacher, all supervised by a behavior analyst. Every child has his or her own curriculum consisting of dozens of programs designed to teach language, social, behavioral, daily-living, and academic skills -- step by painstaking step.

Documentation is an ABA hallmark, and for each child, there's a thick, white, loose-leaf binder full of charts and graphs. Instructors log every activity and plot each day's results. The faculty meticulously tracks the spikes and dips to determine when a child is ready to move on to higher-level tasks and when to make adjustments if a student's performance stalls. "We're looking at data on a daily basis," says Jamie Pagliaro, the school's executive director. "We're not waiting until an individualized-education-plan meeting at the end of the semester."

The school monitors instructors and teachers closely, too: What tone of voice does she use? Does he present instruction clearly? How do they respond when a student makes a mistake? The director of education, Julie Fisher, gives teachers constant guidance and suggestions. "In many public schools, the teacher may see a principal once a month and get feedback on how the bulletin boards are decorated," Pagliaro says. "Here, there's a great deal of dialogue, feedback, modeling, and coaching."

Teachers make monthly home visits to show parents how to reinforce the skills the child is practicing at school, to observe them with the child, and to advise them on issues that can create havoc in a household, such as getting the child to sleep in his or her own bed or eat with the family without flinging food. The school also encourages parents to observe in the classroom and attend the monthly clinic, a meeting of the student's education team to review accomplishments, needs, and goals.

As the founders hoped, the school is very much a part of the community. It occupies two renovated hallways of PS 50, a sprawling K-8 school with 600 students. Six autistic children regularly go to classes there, from ten minutes a day to an hour a day to several half-days a week. But most of the students aren't ready for that step, so Moira Cray, the charter school's assistant director of education, created a peer-mentoring program in which PS 50 students come in to work with their autistic neighbors.

The program, launched as a one-semester experiment, proved so successful for the charter school students and PS 50 kids alike that Cray and Pagliaro decided to recruit a new group of mentors the following semester, but the original group refused to hand over the job. "All the kids came back to our doorstep, prepared to keep going," Pagliaro reports. "They gave up lunch and recess. Now they're becoming experts on autism, and they're spreading the word about autism in their school in ways we could never hope to do."

It costs about $77,000 a year to educate a child at the charter school. The U.S. Department of Education pays $62,000 (through a combination of state and federal dollars), and the school holds fundraisers for the rest. This approach is challenging enough for a tiny school with upper-crust champions -- imagine what it would take for New York City to adopt this model for its 5,000 autistic students.

"The financial burden of educating these kids is just massive," says the father of a student. "But what the charter school demonstrates is that when you give them the right tools in the right facility with the right infrastructure, they thrive."

The school does not administer standardized tests, but under the charter, it must show aggregate performance data. Last year, students mastered 65 percent of their programs, an acceptable record under the terms of the charter. Pagliaro is happy to receive the passing grade, but he doesn't put much stock in such accounting.

"I can say we're meeting all our charter requirements, but what I also have to do is step back and look at the kids," he says. "And I see kids doing amazing things they weren't doing when they came in the door. I see kids who did a lot of repetition now holding conversations with their teachers. I see kids being able to ride bikes and do normal kid things they didn't previously have in their repertoire. I see parents being able to sleep in their own beds at night. I see significant reductions in challenging behavior -- tantrums, aggression. By the end of the year, you're asking, 'Is this the same child?"'

Fran Smith is a contributing writer to Edutopia.