Cover Story
Five years ago, she says, the school system was at a nadir in dealing with the needs of its autistic children and their parents. "We were being bombarded with due process requests," she says, by parents who sought legal recourse against a school system they believed wasn't providing the necessary education for their children, as schools are required to do under the 1990 Individuals with Disabilities Education Act (IDEA).
"We were doing what we thought was best at the time," she says, "but I learned that parents were more advanced than we were about knowing what was good for children with autism."
Green's experience mirrors that of parents and school districts across the country. Nationally, the rate of diagnosed cases of autism spectrum disorders has nearly doubled in the past decade--at least partially because of an increase in public awareness and recognition of the disorder. And effective autism treatment programs--mostly based on a therapy called Applied Behavioral Analysis (ABA)--often require 40 hours per week of one-on-one instruction, which can cost tens of thousands of dollars per child per year.
With the help of mental and behavioral health professionals, among them psychologist Ron Leaf, PhD, Green has now revamped Clark County's services for autistic children to better reflect research-proven treatment methods. Though challenges remain, the due process requests have slowed down. Green largely credits the improvement to a program of Leaf's that applies ABA principles in a classroom setting--an idea that could aid the economic feasibility of autism services in schools.
Legal obligations
Educating autistic children can be a challenge in the best of circumstances. Autism is a developmental brain disorder that affects social and communication skills. A "spectrum" disorder that includes other diagnoses like Asperger's syndrome (see page 48), its symptoms vary widely, but people with autism generally can't understand other people's thoughts and motivations, and so they aren't able to respond appropriately to their environment and form relationships with other people. Many people with autism also have associated language delays and mental retardation, while others have average or above-average intelligence but the same communication problems.
There's no one "cure" for autism, and although there are medications that help with some of the associated symptoms--for example, Ritalin for hyperactivity--the major treatment for autism is early and ongoing educational intervention. And that education, for the most part, is the responsibility of public school districts.
The IDEA guarantees all school-age children with learning disabilities (including autism) a "free and appropriate public education," and a 1991 addendum to the act extended that guarantee to preschool children as well. The act also requires that school districts draw up an individualized educational program (IEP) for every child in special education. Parents, school psychologists, school administrators and teachers meet to hammer out the IEP, which specifies the student's educational goals and the services that the school district will pay for--anything from treatment in a hospital-affiliated autism clinic to placement in the school district's own program.
But what parents want and what school districts are willing to provide sometimes doesn't match up. To understand why, consider the philosophy behind special education, says Ron Palomares, PhD, APA's assistant executive director for policy and advocacy in the schools, and a former school psychologist. Under the IDEA law, Palomares explains, schools are required to give students the chance to make educational progress, but the law does not require them to educate children to their absolute highest level or maximize their potential.
Some autism treatment programs require more than 40 hours per week of one-on-one work between a child and a trained therapist--which can cost between $40,000 and $80,000 per year--and many school districts argue that such expensive services are not necessary for a child's education, let alone affordable.
Indeed, individual school districts must foot the bill for any services included in a student's IEP.
"Of course parents want what's best for their children," Palomares says, "and so do school officials--these are people whose careers are dedicated to special education." But it can be difficult to make the ideal match the reality.
Behavioral intervention
The main time- and money-intensive treatment that parents ask for is based on ABA. First developed in the 1960s by psychologist Ivar Lovaas, PhD, at the University of California, Los Angeles (UCLA), ABA therapy for autism makes use of the idea that when people--autistic or otherwise--are rewarded for a behavior, they are likely to repeat that behavior. In ABA treatment, the therapist gives the child a stimulus--like a question or a request to sit down--along with the correct response. The therapist uses attention, praise or a tangible incentive like toys or food to reward the child for repeating the right answer or completing the task; any other response is ignored.
In a landmark 1987 study, Lovaas found that nearly half the children who received 40 hours per week of ABA therapy were eventually able to complete normal first-grade classes, while none of children who received the therapy only 10 hours per week were able to do the same. Other researchers have partially replicated Lovaas's success--among them psychologist James Mulick, PhD, of Ohio State University, who finds an association between a form of ABA therapy he calls Early Intensive Behavioral Intervention and improvement in children's IQ scores.
Such promising results lead Mulick and other proponents of intensive behavioral intervention to argue that, despite its expense, it should be available to all autistic children.
"It will cost approximately $6 million to support an untreated autistic person to age 50," Mulick explains. "If you spend $150,000 and they become capable of normal learning by third grade, that's a huge savings."
Bridging the research-to-practice gap
But budget-crunched school districts say that they cannot afford the immediate costs of such programs. That's where the likes of Ron Leaf come in with the idea of teaching teachers to apply ABA principles in a classroom setting.
Leaf worked with Lovaas at UCLA in the 1970s. Now, he and psychologist John McEachin, PhD, who also worked with Lovaas, run a company called Autism Partnership, which provides in-home ABA therapy, but also works with more than 25 school districts to train teachers and administrators in ABA theory and techniques. Ideally, Leaf says, children should receive ABA therapy both at home and in school, where they can learn skills in a more natural setting and with more exposure to social situations.
School districts frequently turn to psychologists like Leaf when they are being threatened with lawsuits for not providing adequate services. That was true for Charlene Green, who says she was initially skeptical about ABA therapy. "I'm a schools person," she says, "and I thought he was only going to talk about in-home programs."
Leaf allayed such skepticism by first meeting with administrators to explain ABA's record of success. Then, he set up a hands-on training classroom and demonstration site where rotating groups of district teachers spent six weeks learning ABA methods full time. Leaf and his colleagues also met with parents to explain the new program and teach the parents how to provide the necessary in-home support. And, they helped the school district train its own home-program tutors, because the district also provides between 15 and 20 hours per week of home therapy.
Clemene Ramsey, executive director of exceptional children's services for Fayette County Schools in Fayette, Ga., says that teachers in her school district used a form of ABA before they began working with the Autism Partnership, but that the consultants have refined and improved it. She notes how the ABA strategy drastically improved the behavior of one particular child, a 3-year-old girl with great potential, but many severely disruptive behaviors--including self-injuries.
Two months after she began working with the Autism Partnership therapists, the child's self-injuries had mostly ceased, says Ramsey. And, she says, the girl now has more social and communication skills than she had before--for example, she can sit and wait for a snack at a table with other children.
Green says that results like those are what she's looking for. "If we can't offer what's best for a child, then what we're offering isn't enough," she says.
