Autism rising: delivering services without draining parents and school systems. (research reflections).

The increase in children with autism or autistic-like disorders-no matter whose statistics or definitions you use--appears real and here to stay. At the same time, parents of children with autism find themselves at odds with their child's school as to the best way of treating and helping them. For their sake, we hope that parents, educators, researchers, and government officials can be allies and not adversaries.

Autism is a neurodevelopmental disorder defined by developmental delays and maladaptive behaviors. The 2000 Diagnostic and Statistical Manual of the American Psychiatric Association characterizes autism by marked impairments in social interaction, delays and/or disorders in communication, and restrictive or repetitive patterns of interests or behaviors (e.g., stereotypical behaviors). Autism is also a disability category covered by the Individuals with Disabilities Education Act (IDEA). The early onset, severe behavioral challenges, and poor long-term prognosis combine to make this one of the most stressful disorders for families.

In recent years there has been a striking increase in the number of children diagnosed with autism. Using the Department of Developmental Services database in California, for example, Lisa Croen and her colleagues just reported that prevalence rates from 1987 to 1994 increased from 5.8 to 14.9 per 10,000.

Peter Sturney of Queens College, and Vernon James of the Texas Center for Autism Research and Treatment, also reported high prevalence rates (16 per 10,000) using data from the Texas education system in the year 2000. However, as in other reports, the number was higher for younger children (grades 1 through 3) at 22 per 10,000. In his 2002 presentation at the Gatlinburg Conference for Research on Mental Retardation and Developmental Disabilities, Paul Shattuck of the University of Wisconsin-Madison provided detailed statistics on national trends in the prevalence of autism in public schools. He reported that from 1994 to 2000, the average annual increase was 21%!

Bigger Pool or Better Diagnosis?

Certainly, the numbers cited above are compelling, and the media has made headlines of them. One reason for "autism rising", is that the diagnostic criteria and definitions have changed. Many children who do not manifest the "full syndrome" of autism still bear the label, because they fall along an "autism spectrum."

Related disorders, hardly diagnosed before the last 15 years, are Asperger's disorder and Pervasive Developmental Disorder. In fact, the prevalence figures I cited would be even higher if the full range or spectrum of autism-related conditions were included. This expansion of what we consider "autism" results in more frequent use of the label, more research focus on autism spectrum disorders, and a greater likelihood that the disorder will be identified by parents, physicians, psychologists and school professionals. Whether there is also increased environmental or genetic risk for autism today is unclear, but the demand for services, particularly early intervention, is real indeed.

Critical Diagnostic and Treatment Timing

Autism is usually diagnosed by the time an affected child is 2 or 3 years old and there is convincing evidence that the next two or three years provide a window wherein intervention must be carried out to be maximaliy successful.

In a recent essay on autism in the journal Science (2001), Erik Stokstad stated that "the treatment with the most scientific support is behavioral training." This consists of intensive therapy, often up to 40 hours a week, delivered in the child's home setting. It likely results in children who "follow instructions better, learn how to imitate, and have enriched vocabularies" (p. 37).

The empirical support for this model stems from a seminal 1987 research paper by Ivar Lovaas, of UCLA. Children who receive this intensive intervention often transition into preschools or kindergartens with typical peers who provide more language and social exchanges opportunities than would be available in a classroom containing only children with autism or related disorders. The "rub" in this is that the treatment costs thousand of dollars each month ($40,000 a year and up). Few families are able to pay this amount and few school systems are willing.

It is clear that neither parents nor school officials will be able to go it alone much longer if the growing numbers of children with autism diagnoses are to be served.

School administrators balk at the costs, focusing on the annual budget over the long-term economic ga:ms if even a modest percentage of children with autism become independent of the service delivery system and gainfully employed adults. School districts characteristically offer scientifically indefensible strategies in a self-contained classroom for children with autism and other, unrelated disorders. To further frustrate already stressed and scared parents, teachers and their aides are often woefully ignorant of, and/or inexperienced in the use of, behavior analytic techniques.

What has ensued is a flurry of administrative hearings, sometimes advanced to court, whereby parents demand a home program for their child, perhaps supplemented by placement in a class containing typical peers. (To date, no one has tallied the millions of dollars in legal costs spent by school districts in fighting parents--monies that could have funded programs for many children). There are dilemmas here to be sure. Parents cannot be faulted for desiring an empirically valid treatment for their child--one that must be delivered early on during the "window of opportunity" for learning. Yet school resistance, requiring family legal counsel, limits eventual access to more affluent families. From the school district's perspective, there is a crisis in both available funding and in teacher preparation.

There is a need to offset the long-term costs to the nation of providing appropriate educational treatment for children with autism. I see four specific actions that can be taken that may alleviate some of the financial and emotional drain that serving young children with autism is causing:

* More support for research on treatment effectiveness. While research supports the effectiveness of applied behavior analysis, it is essential to "dismantle" effective treatment packages to see which components are essential to their success. We need to determine the ideal number of hours of discrete trial training and how this approach is best combined with other approaches (e.g. incidental teaching, peer interactions). We need comparisons of service delivery settings (e.g. home vs. school). We need data on the long-term effects of interventions, on their impact on families, and on how they can be realistically incorporated into non-research settings. Such research requires a major commitment by governmental agencies, such as the $38.8 million autism clinic and research center that California is building at UC Davis.

* More targeted assistance for professional development. Special funding allocations, perhaps in the form of personnel preparation grants, need to be made to universities and colleges for the purpose of training teachers who will specialize in autism. An applied behavior analysis component is essential. School districts could also receive some financial incentive for sending teachers to such programs.

* School district willingness to to set up state-of-the-art programs to serve young children with autism: I have personally observed many programs that were described by school officials as model programs, but then fell far short in practice. Rarely are the teachers and assistants appropriately trained behaviorally, and rarely is the service delivered intensively, with data collected for the purpose of demonstrating any kind of long-term durable effect. With the increased autism census, it is now more possible, and more necessary, for school systems to establish "best practice" centers.

* Parents need to be partners in the autism intervention: Parents should have a key role in early intervention. Just as parents of a child with diabetes or PKU have to alter and monitor their child's diet, parents of a young child with autism need to carry some of the responsibility of learning behavioral techniques themselves, of home teaching, and of providing "real world" opportunities for the child to generalize skills and language learned in other settings.

Dr. Jan Blacher is a Professor in the School of Education at the University of California, Riverside, where she has been a researcher for 20 years. She is currently the principal investigator of the UC Riverside Families Project, a study of families of children with severe disabilities. Over 600 families have been involved in the Families Project research; their participation has contributed to our knowledge about family coping, the cultural context of mental retardation, dual diagnosis and the transition to adulthood. Dr. Blacher has developed Research Reflections as a forum for communicating exclusively with parents. The purpose of this column is to provide "news you can use." She is eager to read your reactions to Research Reflections and any suggestions you might have. Send e-mail to: [e-mail].