Volume 23, Number 5
September/October 2007
Confronting the Autism Epidemic
New expectations for children with autism means a new role for public schools
by Kate McKenna
Thirty years ago, it was rare to find a student with autism in a public school. When children with severe, unexplained behavioral problems turned up, teachers had little guidance in how to work with them. Many experts assumed these children were retarded. Others even recommended physical punishment to curb disruptive or antisocial behaviors.
Today, about one in 150 American children has been diagnosed with autism spectrum disorder (ASD). No one fully understands why the incidence of autism has increased so dramatically. As its name implies, this complex neurobiological disorder is defined by a variety of symptoms, sometimes subtle, sometimes obvious. Children with ASD can be highly gifted but may have speech and learning difficulties. They may demonstrate repetitive or disruptive behaviors like banging or biting. They may have little interest in making friends or interacting with peers, teachers, or even family members (see sidebar "What Is Autism?").
There is no cure for autism, yet early intervention beginning as soon as the condition is diagnosed and continuing into elementary school can sometimes lead to remarkable success. “We used to hear, ‘There’s nothing we can do,’” says Ilene Schwartz, professor of education at the University of Washington in Seattle. “Now we hear things like, ‘Where’s this kid going to college?’ Because we now know that huge changes can be made.”
At the same time educators are discovering ways to help children with ASD reach their full potential, school districts are coping with unprecedented growth in the number of children with autism seeking services under IDEA—a number that rose more than 500 percent over the last 10 years. The intensive services required by many children with ASD and the need for early intervention place new logistical and financial demands on schools. Many districts are also searching for ways to educate children with autism in settings close to home and in the company of their nonautistic peers.
“When You’ve Met One Child with Autism …”
A key challenge for schools is the fact that no one intervention model works for all children with ASD. The challenge is summed up in an adage used by both parents and educators: “When you’ve met one child with autism, you’ve met one child with autism. The next one will be different.”
A seminal 2001 report by the National Research Council (NRC) found that although there is not enough reliable research supporting any one approach, effective programs for educating children with ASD are “more similar than different.” Key elements included early intervention, intensive instructional programming year round, and personalized instruction tailored to individual goals. The report’s recommendations, based on these findings, call for daily educational services starting as soon as a child is diagnosed, including about 25 hours a week of goal-oriented developmental activity ranging from play skills and behavioral therapy to cognitive instruction. Many children need one-on-one support at first, while others may thrive with less. The report also recommends, “To the extent that it leads to the acquisition of children’s educational goals, young children with an autistic spectrum disorder should receive specialized instruction in a setting in which ongoing interactions occur with typically developing children.”
In the past, children with autism were educated in separate programs. But as the incidence of autism rises, the cost of contracting out the education of these students—or even sending them to another district—has become prohibitive. As a result, schools and districts across the country have been developing their own programs, many based on the NRC guidelines.
Early Intervention in New Jersey
New Jersey, for example, is in the midst of establishing or expanding autism programs in 55 school districts, thanks to a recent $15 million grant from the governor. The Garden State has long been at the forefront of special education, writing laws requiring education for children with disabilities as early as 1918. Although it pioneered specialized programs for autism—most notably the private Douglass Developmental Center, affiliated with Rutgers University and established in 1972—the state is now moving toward creating classrooms in local public schools. This supports the goal of inclusion, and also saves money. Sending a child to a specialized setting outside the district can often cost well over $100,000 per pupil per year.
Tri-Valley Academy is one of New Jersey’s newest public programs for autistic children, serving about 12 children from ages three to six. Located in a Bergenfield, N.J., elementary school, it draws students from three boroughs, using shared staff and transportation resources. Like the Douglass Developmental Center, the program uses applied behavior analysis (ABA) to teach social skills and eliminate serious behavior problems. (One of the first therapy models for children with autism, ABA uses positive or negative reinforcement to systematically teach small, measurable units of behavior.) Along with academic and social instruction, the program offers specialized therapies such as occupational or speech therapy. Tri-Valley can also provide an aide for every student and a full-time behaviorist for all, as do many other schools statewide. Administrators hope that this intensive early intervention will help children with ASD work toward their goals and eventually be mainstreamed into the school’s general education classrooms.
PreK–5 Classrooms in California
In California, the number of students with ASD has grown by 634 percent in the last five years. The Folsom Cordova School District in suburban Sacramento has just put the finishing touches on a new wing of state-of-the-art classrooms at the Russell Ranch Elementary School, exclusively for preK–5 students with autism. Two rooms are for two- to four-year-olds, one accommodates kindergartners to second graders, and the other is for students in third to fifth grade.
Classrooms in the new wing were designed with autistic students’ sensitivities in mind. Many children with ASD are exceptionally sensitive to sensory stimuli such as light and noise. The new classrooms feature soothing or muted colors, noise-reducing carpets, and low-level lighting. Even the nearest bathroom is sound-proofed to eliminate distractions. The wing also includes an occupational therapy room and a behavioral clinic. Clinic staff will use ABA to teach children skills like taking turns, following directions, sitting and attending to the teacher, and even potty training.
Maureen O’Leary Burness, the district’s assistant superintendent of student support, says that younger children often need more intensive therapies and will probably stay in the new wing most of the time, while older children may spend more time in the general education classrooms down the hall. Within the wing, one-to-one staffing will be available, although the ratio may rise to one-to-three, depending on children’s needs. Children who are mainstreamed into regular classrooms will be supported by aides who are trained in ABA and supervised by a district behavior analyst, Burness says.
The district has a five-year plan to provide evidence-based interventions and training for both general education and special education teachers. It is one of several districts in California considering year-round programs for children with ASD.
Full Inclusion K–5 in Massachusetts
Located in Dorchester, Mass., the Patrick O’Hearn Elementary School is one of the most inclusive schools in the country. The small urban school serves 230 children from kindergarten through fifth grade, including high proportions of low-income, minority, and immigrant students. One-third of the children at the O’Hearn have disabilities, including 5 to 10 percent with ASD, but all the students are enrolled in general education classes.
At O’Hearn, a typical class has about 22 kids. There may be six to nine children with disabilities, of whom perhaps four have severe disabilities. Each classroom has two teachers, a general education teacher and one trained in special education. With student teachers, therapists, and aides, there are sometimes as many as six adults in the room. This makes collaboration important, says principal William Henderson (see sidebar "Facilitating the Inclusion of Students with ASD").
Much of the therapy for children with ASD is done in the classroom, Henderson says. For instance, an occupational therapist might work with young children during math instruction, when they are using manipulatives. Children are rarely pulled out of class for special instruction. For challenging behavior, teachers use a variety of strategies. Minor disruptions may be ignored. (“There are degrees of banging,” he points out.) A child may be scheduled to go out regularly to release some energy on the playground. Sensory integration techniques may help some children—for instance, changing the texture of the classroom chair or stroking a child’s elbow. Teachers also draw on ABA methods.
All this is easier, Henderson says, if a child has been introduced to school early. But even for a child who is progressing well, what works in the classroom may not work in the lunchroom or the auditorium. “It’s tricky,” he acknowledges. “We spend a lot of time trying to figure out what to do next [for each student].” Some O’Hearn students with autism have been recommended for smaller, more restrictive settings, he said.
Henderson, who is blind, believes that access to curriculum, along with the proper support, is the foundation for students’ success. He describes one student with ASD who came to the O’Hearn after his mother objected to enrolling him in a school for autistic children. With therapy and behavioral support, the boy has become one of the school’s top students. He’s also been building on his social skills and newfound acting talent by participating in the school drama club—the kind of resource that Henderson points out is generally unavailable in a segregated setting.
“Best Practices” Guides
A few decades into the public education of children with ASD, many schools and districts have pioneered programs that are helping autistic children make progress as defined in their individualized education programs. To keep schools from having to reinvent the wheel, states like California, New York, New Jersey, and others are perfecting their own “best practices” guides aimed at helping schools use the most successful tools available.
At the University of Washington’s Experimental Education Unit, Schwartz oversees a U.S. Department of Education initiative aimed at improving programs for children with autism nationwide on a case-by-case basis, drawing on the NRC recommendations. The program’s goal is for every child with ASD to receive the best possible education at his or her local school. Schwartz and other autism experts sponsor weeklong training sessions for small teams of educators who come to Seattle from around the country. She and her colleagues also make site visits to school districts to help district staff members assess their needs and develop the best model for each school.
In her work with districts, Schwartz and her team consider factors like teacher-student ratios, whether trained teachers and therapists are available, and how the school can best support—and keep—specially trained staff. They also tackle challenges specific to the learning or behavioral needs of particular children in a given school.
“There can be a huge gap between what is state of the art and what is state of practice [in the education of students with ASD],” notes Schwartz. “We are trying to close that gap.”
Kate McKenna is a journalist based in Washington, D.C.