Connections: The Struggle to Reach Students with Autism

Home Brooklyn Life Connections: The Struggle to Reach Students with Autism

Michael McShane remembers asking his students their favorite color on the first day of school. Some students gave him blank stares, one immediately responded: “Pizza.”

Randy, a student in McShane’s class, can tell you the make, model, and license plate number of each car owned by the teachers who work at his school. But he has a hard time making eye contact, and if McShane is behind schedule, he throws a temper tantrum. Because of his fixation with the second-hand, he is no longer allowed to wear a watch in class.

Down the hall, in another classroom, Arelle uses a tablet device to communicate. When this gets too frustrating, he often lashes out. When he is unable to use the zipper on his jacket on his way to lunch, he pulls his teacher’s arm roughly. Instead of responding harshly, his teacher takes his hand and guides him to his device. “My staff are bitten, hit and have feces rubbed on them,” says Heather Leykam, the principal of P53K. “And they come back everyday.”

P53K is a collection of seven Brooklyn schools that serve students with special needs.  The middle school where Randy and Arelle are students—296—serves children with moderate to severe autism.  At 296, teachers have a unique challenge: to make meaningful connections with students for whom connection is inherently difficult.

Annette Konoske-Graf/The Brooklyn Ink

Randy, Arelle, and 34 of their classmates with autism are relegated to one hallway on the third floor of a large, gray building that 296 shares with three other schools. At first glance, the classrooms might not seem distinct from the rest in the building—library shelves are crammed with books, boxes of broken crayons decorate tables, folders are scattered on the teacher’s desk. But instead of 30 desks, there are only six. Old, yellow tennis balls, intended to limit loud noises in the classroom, cushion the legs of every chair and table. Routines are plastered on every door and whiteboard, listing the schedule for quiet time, reading and social skills. Students have individual workstations where they can work independently when they feel frustrated or confused.

The experts say there is no sure-fire way to connect—intellectually and emotionally—with a child with autism. At 296, teachers try to determine where students lie on a quadrant, with the Y-axis representing the student’s level of autism, and the X-axis representing the student’s level of cognition. Within this framework, a student—like Randy—might reflect average, or extraordinary, cognition, while still resting somewhere on the autism spectrum. Children with autism are “like snowflakes,” says McShane, who has taught Randy for the past two years. McShane must figure out how to reach each of his students in a way that is uniquely meaningful.

Another student may have a low cognitive level coupled with a high placement on the autism spectrum. Twelve-year-old Eric is non-verbal. He stares at the floor with large, brown eyes, his hands clutching his shirt, avoiding communication with his classmates. When I go to shake his hand, he recoils. He retreats to a rocking chair, where he sits and stares at the copy of Goodnight Moon on the bookshelf in front of him. Eric reflects two of the main characteristics of children with autism: high anxiety levels and repetitive behavior. He is fixated on cars. With this knowledge, his teacher can use pictures of cars, or model cars, as tools in her classroom. In order to cajole Eric back to his seat, his teacher uses car stickers as reinforcement.  “These students are reinforcement oriented,” says teacher Cristina Sunseri. “You have to get to know them individually. You have to get to know what they like.”

Because students at 296 also tend to be visual learners, teachers use pictures to make connections. In Meghan Proehl’s classroom, she wears a necklace with a silver chain laden with pictures of her students. In the pictures, students are successfully completing appropriate classroom behavior—“quiet mouth” or “quiet hands.” Proehl shows me how it works with Quadrey, who couldn’t sit in a chair a year ago. “Sometimes, it’s like we speak a different language,” Proehl says. Immediately after he sees himself completing the action, Quadrey sits at his desk, hands folded in front of him, his eyes glued to Proehl and her necklace.

The students at 296 are between 11 and 13 years of age, and are struggling with the same hormonal changes as their peers in general education classrooms. Their cognitive levels, however, range from an 18-month-old level to a 7 or 8-year-old level. What causes autism is still a mystery—contending hypotheses are genetics, environment and measles, mumps and rubella vaccines. Although the scientific community has deemed the vaccine idea a hoax, teachers and parents at 296 are still keeping an open mind. Principal Heather Leykam says determining autism’s root cause isn’t her goal. “We aren’t research scientists,” she says. “We’re educators.”

Some students at 296 have echolalia, which causes a person to involuntarily repeat words or phrases others have just said.  This makes communication between teachers and students particularly difficult.  If a student hits a teacher, and the teacher says, “Say you’re sorry,” the child might say, “Say you’re sorry,” with the same intonation as the teacher. Sometimes this happens when a teacher says something heartfelt—“You’re wonderful,” or “I love you”—and the student parrots back what the teacher said, without any concept of the meaning. When this happens, teacher Amy Bienstock says, shaking her head, you just have to “let it go.”

Students often fall into one of two categories: over-stimulated or under-stimulated.  Those who are under-stimulated try to hug everyone in sight, and teachers and administration make a conscious effort to teach students to ask permission before throwing their arms around somebody. Those who are over-stimulated prefer quiet environments and rigid routines. Because of these sensitivities, things like going to the bathroom, going to lunch or a fire drill, present a host of difficulties.  Although over-stimulated students shy away from physical contact, some teachers nonetheless try to use high-fives or shoulder pats to make connections. These connections, teachers believe, will help students learn to deal with a physical world.

Students and teachers at 296—just west of the Wilson subway stop in Bushwick—face challenges beyond communication and socialization. Sarah Mejia, the school’s coordinator and a 15-year veteran at P53K, says that when she started, teachers “were dodging bullets” on the way to their cars. While Bushwick has improved dramatically, she says, many of her students still face extreme poverty and violence in their community. Some immigrant parents are terrified of government officials, so reaching out to advocacy groups is challenging. Teachers make weekly trips to Family Dollar to ensure their students have what they need to be successful in the classroom. One at a time, Cristina Sunseri teaches her students how to brush their teeth after lunch—she isn’t sure they have the opportunity to do so at home. Mejia discusses how teachers at 296 must use creative techniques to serve their students—she once used a rubber band to replace the elastic on a student’s tattered, sagging underwear.

Annette Konoske-Graf/The Brooklyn Ink

Inside the building, one room serves as the nurse’s office, the counselor’s office, the main office, and the meeting room for 296.  Principal Leykam contends that the NYC Department of Education has not begun to really think about what her students need. Students do not have gym time because there is only one gym for the four schools within the building. Despite these concerns, 296 does what it can to implement innovative techniques to make connections with students, like yoga. Every morning, the students at 296 spend 18 minutes participating in “Get Ready to Learn,” a program whose results are validated by NYU.  The program focuses on four skills: time on task, self-regulation, communication and attention.  Some teachers incorporate 10 minutes of yoga after lunch as well. The morning yoga session ends with a circle of song.

The students at 296 are part of District 75, the collection of schools dedicated to students with special needs. According to Thomasina Howe, coordinator of District 75 schools in New York City, students at 296 may feel like Charlie Brown in Peanuts, hearing only a distorted drone from their teacher when he or she speaks. Howe trains the teachers in her schools to be empathetic relationship-builders. “It takes a little extra to go beyond what you’re seeing,” she says. “There’s someone in there trying to get out.”

During the 2012-2013 school year, District 75 served 7,628 students who fall somewhere on the autism spectrum, of the approximately 1.1 million students in New York City Public Schools. According to Howe, while Attention Deficit Hyperactivity Disorder might have been the prevalent diagnosis among young people in the past, autism is the “soup du jour” of diagnoses today. According to the CDC, 1 in 88 children falls somewhere on the autism spectrum, compared to 1 in 150 children in 2000. Because of the influx of students labeled as autistic, District 75 had to open a new school this year, P277Q, in Queens.

Parents of a student with autism have a choice. They can keep their child in a District 75 public school, pay for private school education, or try to get the city to pay for one by suing the Department of Education, arguing that public schools cannot provide a quality education for their child. Tuition costs at a privately run alternative school, like the Brooklyn Center for Autism, can exceed $100,000 a year, although the DOE supplements most of the tuition if the parents win their case. The DOE did not respond to repeated requests for the number of cases brought against them every year.

Ray Cepeda, the executive director of the private Brooklyn Center for Autism, argues that making connections with a student with autism takes a specific approach based on the behaviorist theory of B.F. Skinner. At his school, students have access to exercise therapy and a massive team of speech therapists, teachers and behaviorists. Cepeda believes that the traditional classroom setting for students with moderate to severe autism—six students, one teacher and one paraprofessional—does not ultimately create lasting growth for students. “There is no data to suggest a long-term, cumulative, therapeutic affect for students in a 6-1-1 classroom, or anything other than a 1-to-1 classroom,” he says. Cepeda believes that students with autism can only see growth after working directly with one teacher.  Although the student may lose the opportunity to socialize as part of a group, he argues that students with autism who connect with one person are more likely to show meaningful, sustainable growth.

Despite Cepeda’s certainty, there are advocates for both approaches. Teachers at 296 argue that socialization must be a focus when connecting with students with autism.  Howe believes parents often resort to suing the Department of Education out of fear. Isolating students in a 1-to-1 situation does not ultimately serve the student, she contends. Students must learn how to socialize and be part of a group so that they can eventually enter higher grades, vocational school, and even college. Still, she admits, “Early intervention is key, and 1-to-1 intervention is important at an early age.”

In addition to fear, parents of students with autism often struggle with embarrassment.  Some parents of students at 296 do not attend church services anymore because they are worried about their child having a reaction that other people will not understand.  According to Mejia, the school’s coordinator, when a child throws him or herself on the floor of the supermarket because he is she is over-stimulated, strangers judge and make parents feel like an “other.” Instead of risking the shame, some parents leave their children at home in front of the television. But others are clearly dedicated to understanding how their child can contribute to society.

Jhamari Jacobs, another student in McShane’s class at 296, loves sports. But on the basketball court at the park, he walks away from other children instead of answering when they ask if he wants to play. Jhamari has trouble communicating, and other problems too. His need to be clean holds him back from playing, for example. Play-dough isn’t fun for Jhamari because the texture bothers him.

Contessa Smalls is Jhamari Jacob’s mother. Although Jhamari was originally in a general education classroom, Smalls began to realize that he was not able to keep up with assignments. After visiting 296, Smalls made the difficult decision to transfer Jhamari to a special education classroom. “Even though Jhamari was in regular education, and I would have preferred to keep him there, I had to make a choice,” she says. “Even though it looks nice and feels good to have him in a general education classroom, I have to do what’s best for him.”

Smalls has dedicated her life to determining how to best communicate with Jhamari, who last uttered a sentence at age two—when he told his mother to “get the ball.” Of the moment Jhamari was diagnosed, she says, “I was hurt and angry, because I blamed myself. What did I do?” At home, Smalls encourages Jhamari to participate as a member of the household by vacuuming and helping her with shopping. “Every day I’m scared,” she says. “But I know that he has to be independent, to do things on his own, to function in society, even if it’s just the basic things in life.”

Smalls, who lost a child before Jhamari was born, considers Jhamari a “blessing.” “I sleep, but I’m not a hard sleeper. I worry. Every single day, I think about his future,” Smalls says. “I know I’m not done yet. This is just the middle, or the beginning, and I’m getting to know him. I’m getting to know his ways.”

Jhamari sits in the lunchroom at 296, surrounded by loud students with trays jostling at their tables. He rests his elbows on his knees, and cups his chin in his hands. When McShane, his teacher, asks him about his mother, he grins ear to ear. McShane asks him to look up, and Jhamari’s smile momentarily wavers. With some initial trepidation, Jhamari raises his head. McShane is ready with a high-five, and the smile returns.

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