New Focus on Autism
Varied CUNY-wide initiatives confront its many puzzles.
At Brooklyn's P.S. 396, special education teacher Shavon Paul is keeping a watchful eye on the small group of students in her class. She teaches six boys, all of whom have autism. Suddenly, one boy begins to wail. His arms flap in the air. His blue shirt crinkles. Paul tries to verbally soothe him, but it doesn't work and this might mean a setback. A year ago, he used to cry constantly but not any more.
Quickly, Paul moves the boy to an empty table, sets down the magnetic counting maze he'd been working on and asks him to continue. The boy quiets down and the room seems to sigh with relief.
A few evenings earlier, after a similarly grueling day in the classroom, Paul had logged online to a Hunter College post-master's degree applied-behavior analysis certification course - one of two offered by the University.
The course is geared to educators and other professionals who work with autistic students. It is also part of a broad effort by the University, partially centered at Hunter, to address the growing incidence of autism, a potentially devastating neurobiological communication, social and behavioral disorder.
The varied autism initiatives in education and research under way at CUNY are aimed at a similar goal: to create a cadre of local educators, therapists, health and other professionals, scholars and parents who understand autism. At Hunter, much of the focus is behavioral. At Brooklyn College, a range of educational approaches is explored, and at City College, researchers are looking at the role class size plays in educating students who have autism. At Queens College, which like Hunter is home to a branch of the state-funded Regional Centers for Autism Spectrum Disorders, there is also a bilingual outreach to the immigrant community.
Increased public awareness of autism has been largely driven by the increase in the number of children who have the disorder.
Fifty years ago, only about one in 10,000 children were diagnosed with autism. Autism Speaks, an advocacy and fundraising organization, believes the figure is much higher today. Citing recent data from the federal Health Resources and Services Administration the group believes it's one child out of 91.
"Our programs support the families and practitioners who work with these children, drawing upon Hunter's strengths in teacher training, research and community outreach," says Hunter president Jennifer J. Raab.
CUNY Distinguished Lecturer John Brown, who teaches the class Paul takes, notes that "I have tons of New York City school teachers taking classes that are not required so they can serve their students with autism more effectively."
Officials at Autism Speaks believe the rise in the number of affected children makes autism more common than the pediatric versions of AIDs, diabetes and cancer combined. Some experts say the increase is due to better diagnosis. But many who have worked in the field of developmental disabilities for years disagree and even the CDC notes that "a true increase in the number of people with an ASD (Autism Spectrum Disorder) cannot be ruled out." Autism Speaks states on its website that "there is no established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered."
Still, the cause is not known, and there is no cure. Fifty years ago, many blamed cold, distant parents and so called "refrigerator mothers" were often sent to therapy while their children remained untreated or were institutionalized. Now, many researchers believe a genetic predisposition combined with environmental toxicity at a vulnerable time in the development of a child may be at the root of the disorder.
Classes are offered at the Hunter campus and online. The methods advocated by the course have been praised by the American Academy of Pediatrics and the New York State Department of Health.
Although Paul is confident of her skills as a special education teacher and has learned a lot on the job, she enrolled in the Hunter course because she wanted to know more about autism. Every child is different, she says, and the disability strikes with varying levels of severity.
"I have questions about how to deal with certain situations," Paul says. "And that course also puts words and meaning to what is taking place. It helps me to speak the language to another person who is in the same field."
According to Brown, Paul did the right thing by moving the distraught student to another table. The technique - re-direction - often involves a split-second decision to find the right distraction, one that will enable a student to continue working. Brown says re-direction is based on general data, science and technology - and the specific data and needs that apply to the particular student. That, the professor emphasizes, can require complicated analysis and re-analysis. For example, what do you do if Plan A does not work? Behavior analysis, Brown says, is a method of determining whether the technology works for a particular student in a particular situation. "It is science, not a random bag of tricks."
Also at Hunter, psychologist Michael Siller is researching toddlers who are at risk for autism - including younger siblings of children who already have it. He and his staff also teach parents how to encourage their children's communication during play time.
Behaviors that raise concerns that a child might have autism typically begin between 12 and 24 months. So Siller is studying warning signs, such as lack of shared eye contact, affect and communicative gestures or the presence of repetitive play to see if some of these behaviors can be effectively targeted during early intervention.
Children who have older siblings with autism are believed to be at higher risk due to genetic and/or environmental factors. Researchers are trying to find out whether developmental delays associated with autism can be extinguished, modified or prevented by early intervention. Siller's playtime work with children addresses this possibility and builds on earlier research he conducted at the University of California, Los Angeles.
Siller often carries a bag with special toys to the houses of his participants, who either have autism or are at risk for it.
"Most children with autism find it difficult to include their parents when playing with a toy," Siller says, although he is careful to emphasize that many parents with typical children also need help with these skills.
Melinda Cornwell, an undergraduate student and mother of a son with autism, is among those who assist Siller as a research assistant and playtime "interventionist." She says she tries to help young children at risk for autism discover that playing with another person can be rewarding and fun - a concept that is not always simple for children with autism to grasp.
Siller has also written a workbook for parents: Our Special Play Time: Finding Ways to Improve Play Time With My Young Child. The book illustrates concrete steps for parents to help their children connect and develop enthusiasm for toys, playmates and their relatives.
Many autistic children have sensory deficits. They feel objects too intensely or not enough or have trouble sitting still for long. Frequently, handling these issues is left to occupational therapists during individual sessions while teachers remain baffled about what to do about them in the classroom.
To address this, Hunter Assistant Professor in Early Childhood Special Education Donia Fahim teaches a master's degree class in which sensory integration is one of the evidence based practices taught. Teachers scan a checklist informing them of their own sensory issues such as adjusting their earrings or necklaces. The checklist, she says, helps teachers better understand their students' behaviors.
After discussing the checklist, Fahim provides strategies for overly fidgety children. These include teaching them to recognize when they are upset and using relaxation strategies and self-management skills. Teachers need to help students learn to ask for a break when they are over-stimulated, she says. They need to teach students that "time out" is not a reward or punishment but a way to regulate their behavior.
Hunter professor Shirley Cohen co-designed and trains New York City public school teachers in the innovative "ASD Nest" program. The program, at 15 elementary schools, mixes typical and high-functioning autistic children in the classroom, which Nest advocates say benefits both groups. The students who have autism model the typical students. The typical students learn to live in a world where people have differences.
During recent visits to Nest classrooms in Manhattan and Queens, it was often difficult to distinguish the children who had autism from those who didn't.
At P.S. 112 in East Harlem, for instance, students planned for a teleconference with NASA. An autistic student who has communication difficulties was asked what her role in this activity would be. "To communicate with NASA!" she said triumphantly.
At Hunter and Queens, the state-funded Regional Centers for Autism Spectrum Disorders have, despite relatively small budgets, creatively provided training and conferences for professionals as well as parents of autistic children. The programs are directed at Hunter by Cohen and, at Queens College by Fredda Brown. These two professors estimate they have helped to educate hundreds of classroom teachers, graduate students, parents and others working with autistic students. Fredda Brown says that during the past year, the Queens center has provided training to about 200 graduate students from multiple disciplines, 225 New York City public school and Nassau County educators and 125 people at a second annual conference. In August, the Hunter regional center also offered a three-hour training session in autism mandated by the state for the certification of special-education administrators, supervisors and other educators.
OTHER EFFORTS, NEAR AND FAR
Several CUNY professors are reaching out to potentially underserved communities at home and abroad. In Flushing, Queens assistant professor of special education Peishi Wang provides training and support in Mandarin to family members of the Chinese immigrant community who are affected by autism. Fahim at Hunter, who has worked with autistic individuals in Africa and the Middle East, is now setting up training courses for teachers and parents in Nigeria, Kenya and Egypt. And Hunter psychologist Tricia Striano is working with colleagues in Sardinia to conduct a study on eye-gaze processing in autistic children. The research aims to establish more reliable diagnostic tools and new intervention strategies for first-year infants.
At Brooklyn College, as part of its "cross-paradigm" approach, speech-language pathology and special education experts collaborate and provide a certification program to students from a variety of disciplines, including social work and psychology.
A City College study shows that children who have autism need small classrooms and quiet environments in which to learn. This data may be helpful to those who say additional funding is necessary to educate autistic children.
Whether at home or abroad, autism remains a conundrum and like Paul, many teachers believe the more education they have the better.
Patricia Mahalko, who teaches higher functioning second graders at P.S. 186Q in a Nest program in Bellerose, Queens, is also earning her applied-behavior analysis certification. Recently, she signed on to the same online session as Paul and a number of other New York City public school teachers. One of her missions that evening online was to ask how to handle highly inappropriate personal questions innocently posed by one of her students.
One day in the summer, Mahalko visited the Nest students she teaches during the school year. She peeked into a classroom and held her breath when a boy was asked to pretend that he was in ancient Greece and to play a game popular with children of that time and place.
"He doesn't like to pretend," Mahalko said.
But sometimes, with autism, breaking large tasks into smaller ones helps. Mahalko nodded as the student's summer teacher asked him to try to pretend for just one round of the game. He did that - and then kept playing. He stayed in ancient Greece. At that, Mahalko let out a sigh of relief.