AS THE FASTEST GROWING DEVEL-opmental disability, autism presents one of the greatest special education challenges facing school districts today. In February, the U.S. Centers for Disease Control released data showing that about 1 child in 150 has a form of autism, when previous estimates put the figure at 4 or 5 per 10,000. According to the U.S. Department of Education, the number of children age 3 to 21 in federally supported programs for autism increased from 22,000 in the 1993-1994 school year to 223,000 in 2005-2006.
Autism is a complex brain disorder characterized by difficulties interacting with people and communicating verbally and nonverbally. People with autism also exhibit repetitive behaviors and interests, and they may have unusual responses to sensory xperiences, such as the way something looks or sounds. The barely audible buzz of a fluorescent light just beginning to flicker might cause ear-splitting pain for a child with autism. Its various forms, including Asperger syndrome and autistic disorder, are known broadly as autism spectrum disorders (ASD), though autism is often used as an umbrella term.
Among the most important characteristics of autism, and one that creates a great challenge for schools, is that it is so different for every person. While there are specific techniques that are known to be effective, one teaching methodology is not appropriate for all children with ASD. In addition, children with autism require services at home and in the community to help them "generalize" what they learn in school to other settings. Children with ASD may also need speech, occupational, behavioral and other therapies.
"Superintendents and school business offi cials need to understand there's no way to shortcut these services for these children," says Catherine Conrado, administrative director of special services for the Lodi Unified School District in California's Central Valley region, about 90 miles east of San Francisco. "They are high cost and high intensity, and you need to be able to budget for that because there's no way we get enough from state and federal sources."
Explosive growth in autism cases is often attributed to better diagnosis and a wider range of disorders characterized as ASD rather than a true increase in prevalence over the past decade. Faced with legislative mandates, parental demands, the threat of litigation, limited fi nancial resources and a rapid flow of information-and controversy-about treatments and instructional strategies, district administrators are struggling to find the best way to improve the prospects for their students with autism.
Pivitol Role of Education
The primary treatment for autism is education, and the earlier it starts the more likely it is to produce a positive outcome. In its 2001 book Educating Children with Autism, a committee of the National Research Council explored various treatments and instructional models and laid out the elements of effective education programs. But it also commented on the disconnect between the quality of model programs and the reality of most publicly funded early education programs..
Six years later, the quality of services offered by public schools has improved greatly for children with autism, says Kathy Savage, who coordinates autism programs for Plano Independent School District in suburban Dallas. However, she adds, "the more we know the more we realize how much we still don't really know."
Before working in affluent Plano, which has about 500 children with ASD among its 53,000 students, Savage worked in a large, urban district in Texas and before that a regional center that served rural and smaller suburban districts. Sometimes school administrators in other districts will state categorically "that 'we do it this way,' thinking there's one right way to do things," Savage says. By contrast, "we never want to say we are the best we can be. We always ask, What more can we do for this child to help him meet his full potential?"
Bryna Siegel, director of the Autism Clinic at the University of California-San Francisco, consults with many district administrators. She laments the fact that many administrators are satisfied to create a legally defensible program, rather than striving to provide individualized programs that help each child make the best possible progress that will be meaningful for that child's future. Part of the problem, Siegel believes, lies in unrealistic expectations of some upwardly mobile parents. She urges administrators to "make sure they give parents accurate information about what to expect in their children's development" and to ensure that educational goals on the individualized education program (IEP) consider the child's prognosis. "If educational administrators don't bite the bullet and tell the parent what's really happening, pretty soon it turns around and bites them," Siegel says.
Pleasantville Union Free School District
The Pleasantville Union Free School District in Westchester County, N.Y., always had a reputation for providing high quality special education services, especially for children with learning disabilities. Until a few years ago, however, the district was incapable of serving its growing population of children with autism-related disorders. Like many small districts, pleasantville, which serves 1,800 K12 students, was paying mightily-well over $65,000 in tuition, transportation and other service costs- to educate each student with autism at an out-of-district program run by the local educational services cooperative, BOCES, or Board of Cooperative Educational Services.
But parents began insisting that their children be able to attend the local school, especially since many of them were doing well in mainstream preschool classes with the support of a special education teacher. The Individuals with Disabilities Education Act requires schools to provide a free, appropriate education in the "least restrictive environment," so Pleasantville district leaders gave it a try. Th e program started in 2003 with two children; the following year, four more autistic children entered kindergarten at Bedford Road School, the district's elementary school. Pleasantville uses three mnodels-full mainstreaming with classroom aides, pullouts for direct instruction, and selfcontained classrooms-to educate more than 15 children in the elementary school. Th is year, the district hired a specialist to work with families and another teacher to support close to 10 children with autism in its middle and high schools, providing direct instruction for those who need it. Older students also receive job coaching and community-based instruction, an important but often overlooked component to help them transition into life after high school.
Now three years later, Pleasantville's autism program is very well regarded, enough so that it was recently listed as a selling point in a real estate ad for a high priced house. Key elements of the district's success include its willingness to budget for experienced staff and the flexibility to adapt the program to the changing needs of the individual children being served.
"We have demonstrated that not only have we ended up providing a higher quality of education," says Carolyn McGuffog, the district's director of educational services, "but we are doing it at a substantial cost savings for the district.
"I'm very proud of what we're doing," McGuffog adds, "but I'm anxious for other districts to do it too."
While some children with autism attend special schools-both public and private- the prevailing winds are defi nitely blowing in the other direction. "There are and have been special schools for autism because the behaviors can be so challenging and there's such a great push for specialized approaches," says Linda Hickson, director of the Center for Opportunities and Outcomes for People with Disabilities at Columbia University's Teachers College in New York. "But the trend is toward serving more children in-district, and the challenge for district administrators is fi nding how best to serve children in their regular schools so they can be there with their peers."
The decision on when a child is best served in the home district or outside depends on the circumstance. "My question in every meeting with parents and teachers is, What are the child's characteristics? What does he or she need to learn, and where can the child best be taught that information?" says Brenda Smith Myles, chief of programs and development at the Ohio Center for Autism and Low Incidence, a federally funded information clearinghouse under the Ohio Department of Education, Office for Exceptional Children. "In most cases, public schools should be able to provide that."
Even as the trend is toward mainstreaming, new specialized autism programs are opening. In August, the Florida Autism Center of Excellence, a charter school, opened its doors in tampa.The school aims to serve up to 200 students, ages 3 to 22, with individualized programs based on research-based instructional strategies. "We've really been able to tap into the research out there on the best practices for educating students with autism," says Shannon Moss, behavior analyst program director. The 140-acre campus includes game rooms, computer labs, horse stables, a gym, basketball courts and a boathouse with anoes. Older students can also learn job skills at a campus snack bar and store, says Marc Lavett, executive director.
FACE, the first charter school of its kind in Florida, received $700,000 in seed money from the Florida Department of Education. It is managed by Educational Services of America, which runs more than 120 special education and alternative schools, including 38 private schools in Florida.
Fundamentals for Success
Educating Children with Autism sets out these fundamentals for successful educational programs: early entry into an intervention program; active engagement in intensive istructional programming for a full school day for at least five days a week with full-year programming; use of planned teaching opportunities organized around brief periods of time for the youngest children; and sufficient amounts of adult attention in one-to-one or very small group settings to meet individualized goals.
Even though there is consensus about the necessary elements for a successful autism program, many districts have difficulty translating ideas into action. One reason is the dearth of teachers prepared to work with children who have ASD. Special education and general education teachers without that experience misinterpret the behaviors that children with autism exhibit and don't know how to apply the necessary interventions in the classroom.
"Most professionals don't truly know what autism is, and if they don't they tend to think the behavior is willful disobedience," says Brenda Smith Myles, chief of programs and development at the Ohio Center for Autism and Low Incidence. "They do not know that children with autism spectrum disorders don't have within them that automatic mechanism to calm themselves down. They don't understand that children with autism have social poblems. Also, teachers largely don't understand the sensory challenges of our kids. People don't understand that the underlying characteristics of children with autism have an impact on their dayto-day performance."
There's also a great deal of confusion about which approaches and interventions to use, says Hickson. As a consequence, districts may rely on one strategy-often based on the well-researched and wellentrenched applied behavioral analysis theory (ABA)- to the exclusion of other promising approaches.
ABA is the basis for intensive instruction and behavior-management treatments designed to reinforce wanted behaviors and reduce unwanted behaviors. A common application of ABA theory is discrete trial training, an intensive approach in which children often work one on one with a teacher for 30 to 40 hours a week. Tasks are broken down into small subskills taught through repeated practice. Rewards are used to reinforce positive behaviors.
"District administrators should join with parents in setting criteria for which approaches to include," Hickson says. "My advice would be to offer more than one approach, as long as they are research based, to give parents options."
The understandable challenge, Hickson says, is that while some approaches are based on years of research, they may not have yet produced a wealth of evidence to support their use in the classroom. Citing just one of several worthwhile approaches, Hickson points to the work of UCLA's Connie Kasari and Marian Sigman on the effectiveness of targeted inrventions for joint attention and symbolic play, two core deficits in young children with autism. Hickson's goal is to introduce teachers and administrators to other promising research-based approaches. "ABA is essential, but it's not the be all and end all," Hickson says. "I think schools should continue to look at alternative approaches."
While there is no one-size-fits-all solution, autism experts inside and outside school districts nationwide point to features that distinguish successful public school programs.
Everyone benefi ts when schools get involved early and work closely with families and the agencies that serve them. Early, intensive intervention can have long-lasting effects in a child's school years when it is focused on core deficits in autism, Hickson says. Th e first step is early diagnosis. Federally funded research published in July's Archives of General Psychiatry found that about half of children with ASD can be diagnosed soon after their first birthday. Autism disorders usually can be reliably detected by age 3, though it is estimated that only 50 percent of children are diagnosed before kindergarten, according to the National Institute of Mental Health.
Siegel urges school administrators to work closely with the local organization responsible for providing services for children from birth up to age 3. The goal should be seamless, cordinated services that extend from the time the child is diagnosed through the transition to adulthood. In an ideal situation, Siegel says, the neighborhood school becomes the early services provider.
The Lodi Unified School District has a close working relationship with the medical community and the state-funded social services agency that provides early intervention services, and it continues to provide home services when children with ASD are in school.
"It's critical to have a good relationship with whatever entity serves the family, because you have to be giving the family similar information and you have to have similar goals for the child," Conrado says. "Schools can't do it alone, and the agencies can't do it alone."
Pleasantville hired a full-time staff person to address the continuity between the school and home and to provide community-based instruction one day a week after school. As a "family trainer," the primary job is working with parents and children to help carry over the skills learned in school to home. But by observing the child in class and meeting regularly with teachers and the speech and occupational therapists, she will "carry all the same strategies and techniques from school into the home," McGuffog says.
Districts with good programs have strong parent involvement and collaboration. "That may be one of the most important elements," Myles says.
Schools with successful autism programs do comprehensive educational planning, offer a range of educational opportunities, and ensure that individualized interventions are integrated into the child's daily program. Comprehensive planning begins with understanding the characteristics of autism in each child and matching the child's needs and strengths to researchbased strategies and interventions that have been proven to work. "We know our children need sensory supports, they need reinforcement, they need visual structure and supports, they need the task demands of their environment assessed to see what we are requiring of them, they need social and communication skills, and then, finally, they need generalization activities," Myles says. That might mean a trip to the secretary's office after a classroom lesson on asking for help. "One of the things our kids are famous for is learning a skill in one environment and not knowing how to use it elsewhere," she says.
Successful programs off er different models of instruction and different settings, depending on the needs of the child. They range from self-contained classrooms that provide structured teaching all day, to direct instruction for part of the day, to full inclusion with the help of an instructional aide.
Teachers need clear training and support in how to apply those interventions in the classroom. Sometimes teachers will learn a great strategy for helping children with ASD, Myles says, but they don't learn how to integrate it into a child's program. This is true in both inclusive and special education classrooms. She recommends that teachers have a one- to two-page document that describes exactly what supports the child's needs during each activity period, such as visual schedules; "priming," a technique that exposes children to assignments before their presentation in class; and "choice boards," which provide a visual display of options.
Districts with successful autism programs also hire people with expertise and experience in dealing with ASD. Specialists are necessary not just to work one-on-one or in small groups with children, but they must be qualified to train and support special education and general education teachers-as well as school administrators- concerning the characteristics of autism. Support staff also should have prior experience working with people with autism or training if they don't.
In addition to specially trained teachers in structured classrooms, a roving autism teacher provides support for administrators, general and special ed teachers, and instructional aides who help ASD children in mainstream classes throughout the Lodi district, which serves almost 30,000 students. At the district level, three of the eight program specialists also have expertise in autism. They handle the most sensitive and complex IEP meetings and serve as Conrado's "training experts." They train teachers and principals and have relationships with the regional center that provides services to the families. "Principals need to understand the students as well so they don't discipline them improperly," Conrado says.
Successful districts also invest in continuing education for the autism professionals to keep them up-to-date on new research and strategies.
Thinking about Results
Districts with successful programs "begin with the end in mind," according to Myles. At the upper grades, that means providing functional training, from basic living skills-getting dressed, performing household tasks, and doing things safely-to supported employment. A district's ability to help a child with ASD transition to life outside of school may be the greatest testament to the success of its autism program, but today it still remains one of the greatest weaknesses for most districts, says Siegel.
In successful districts, the philosophy of "beginning with the end in mind" starts early. "If you have a first-grader, you don't think, 'What do I have to do to get this child through first grade?'" Myles says. "You ask, 'What does this child need in one year, in five years, in seven years?' so that the program is always focused on the future."
Districts like Lodi and Plano, Siegel says, demonstrate that successful programs for children with ASD are not beyond the reach of public schools when district administrators are committed to individualizing programs to meet the needs of children.
"They have a good range of programs, they do a good job of including kids who can benefit from inclusion in a general education setting, and they do a good job with the kids who need to be working on a much more functional skills curriculum," she says. "It's not like they've done something exceptional and unusual. What they've done is good quality education, and it doesn't require six saintlike administrators all working 80 hours a week. They are good people doing a good job in a reasonable way. And there's no reason most school districts can't be like that."
Leslie Werstein Hann is a freelance writer in New Jersey.