The Autistic Child
August 11, 2005
The Autistic Child
Autism first appeared as an identified disorder of children in the1930s and has been increasing in incidence ever since, to the point that in 2002, nearly 120,000 children with autism were being served under the Individual with Disabilities Education Act (IDEA)—an increase of 500 percent over the previous decade. In the United States as a whole, it is believed that 1.5 million Americans are living with one form or another of autism.
The average per pupil expenditure for educating a child with autism has been estimated by the United States Department of Education to be more than $18,000, which is nearly three times the expenditure for a typical regular education student and among the highest per-pupil expenditures for children who receive special education.
So what is this condition that commands increasing attention and concern from public health and the education system?
Autism was defined in a 2001 report by the National Research Council (NRC) of the National Academy of Sciences as “A disorder that is present from birth or very early in development that affects essential human behaviors such as social interaction, the ability to communicate ideas and feelings, imagination, and the establishment of relationships with others.” Manifestations of the condition vary considerably across children and within an individual child over time, but there are commonalities, especially in social deficits. Characteristics of autism commonly also include deficits in verbal and nonverbal communication, repetitive behaviors or interests, and, often, unusual responses to sensory stimulation.
A broader category known as “autistic spectrum disorders” includes conditions such as Asperger’s disorder, Rett’s disorder, and pervasive developmental disorder, all of which resemble the more narrowly defined disorder of “autism” but differ in some of their manifestations. Estimates of the prevalence of autistic spectrum disorders range from two children in every thousand to six per thousand.
There is much controversy about the possible causes of autism, with theories ranging from genetic inheritance to exposure to environmental factors such as vaccines, but so far the precise neurobiological mechanisms involved in the condition have not been identified. No known cure exists, but there is general agreement that early diagnosis followed by appropriate treatment can improve the outcomes for children.
In its report, “Educating Children with Autism,” the National Research Council noted that problem behaviors of children with autism spectrum disorders are among the most challenging and stressful faced by families and schools. But the definition of a “problem behavior” depends on whether the problem is considered from the perspective of the child or of the parent or teacher. For the autistic child, the problem may be inability to understand the demands of the home or classroom and to communicate needs and wants, along with confusion about the effects and consequences of certain behaviors; while from the teacher’s or parent’s perspective, the child is disrupting household or classroom routines, destroying property, or being aggressive to himself or others.
Some of the behaviors of autistic children are observed in typically developing children but they tend to be more intense and frequent, and longer lasting. Studies have shown, for example, that repetitive motions such as rocking or head-banging, which often occur with autistic children, happen in many normally developing children during the first and second years of life, but decrease as the children begin to crawl and walk.
“Understanding what causes these problem behaviors to emerge during early childhood and preschool years, what maintains them, and what evokes their moment-to-moment expression holds promise of treatments to prevent them from becoming permanent and abnormal,” researchers say. “Once moderate to severe problem behaviors become an established part of a child’s repertoire, unlike children with typical development, children with autism spectrum disorders or other disabilities do not usually outgrow them. Without appropriate intervention, these behaviors persist and worsen.”
Autistic Children and Parents
Autism, which includes inability to interact socially, is an especially hurtful form of childhood disability for parents, who may be deeply injured by a child’s unresponsiveness and inability to show affection. Possibly because it is so hard to accept, autism has become a contentious issue for many articulate parents, who challenge accepted scientific theories about their children’s conditions and put forward alternate possibilities, prominent among them a belief that infant immunizations cause autism.
Autism usually becomes apparent to parents when a child is between one and two years of age, when an apparently normally developing child may stop speaking and withdraw. Scientists speculate that some inherent deficit in the child’s brain causes it to shut down at this time, when brain cells are undergoing intensive reorganization in preparation for childhood and adulthood. Many parents, however, see a connection between the age of onset and the fact that infants have by that time just completed a series of childhood immunizations.
Whether autism is provoked by the shots themselves or by some component of the vaccines is at issue in efforts by some parent groups to prove a link between thimerosal, a mercury-containing preservative used routinely until recent years to extend the shelf life of vaccines, and a build-up of mercury in their children’s bodies, causing brain damage. In 1999, the American Academy of Pediatrics and the United States Public Health Service jointly urged vaccine makers to remove thimerosal from vaccines as quickly as possible, and by 2001, no vaccine routinely administered to children in the United States contained more than half of a microgram of the suspect substance.
A report by the National Institute of Medicine in 2003 reviewed all available studies, in the United States and Europe, for evidence of a link between autism and thimerosal and concluded that no such link could be found, a conclusion that has done little to ease parents’ concerns.
Autism and Schools
An autistic child is unlikely to enter the public school system until age three or four, at the earliest, which may be too late for the very early interventions that scientists currently believe are necessary to modify or reverse the symptoms of autism. But schools are required under the Individuals with Disabilities Act to provide appropriate education and related services to children with autism, whenever they enter the system and whatever their level of disability.
In their article in the National Research Council report, “Educating Children with Autism,” Catherine Lord and James McGee describe various interventions schools are using for these children. They note that the approaches reflect differing philosophies but have some characteristics in common.
Generally, at the preschool level, the interventions include:
- curriculum that emphasizes direct instruction in basic skills and abilities that are essential to learning, such as imitating others, comprehending and using language, playing appropriately with toys, and interacting socially with others;
- highly supportive teaching environments;
- predictability and routine;
- a functional approach to problem behaviors;
- plans for transition from preschool to classroom;
- family involvement;
- small teacher-to-child ratios;
- active engagement of the child from 20 to 40 hours per week.
As children age into the regular school system, a variety of services may be provided under the IDEA, including speech therapy, occupational therapy, and the services of special education teachers. “The appropriate goals for educational services are the same as those for other children: personal independence and social responsibility,” the authors say. As with other children with disabilities, the services an autistic child will receive are described in an individualized education plan decided upon by the school and the parents jointly.
Different school systems adopt differing approaches to educating autistic children, but most interventions fall generally into a category described by Lord and McGee as “applied behavior analysis,” which has as its broad goal to “reduce or eliminate specific problem behaviors and teach new skills.” At one time such behavior modification programs focused on dealing with the consequences of behaviors after they occurred, but increasingly attention is shifting to procedures that focus on what to do before or between bouts of inappropriate behavior, the researchers say. “Interventions that involve changing schedules, rearranging the physical setting, and changing social groupings have been shown to decrease the likelihood of problem behaviors.”
Sometimes, however, positive behavioral interventions do not seem to be effective in reducing or eliminating problem behaviors, and in those cases, different or additional strategies may include intrusive or physically aversive procedures and medication, with the use of behavior-altering drugs in autism a subject that needs much further research, the authors say.
Autism and Public Policy
While the Individuals with Disabilities Education Act contains the necessary provisions to ensure the right to appropriate education for autistic children, the implementation of those services is variable, Lord and McGee point out. It is also very expensive, and “schools need financial help from state and federal programs to provide appropriate services.”
“The treatment of autistic spectrum disorders often involves many disciplines and agencies. This confuses lines of financial and intellectual responsibility and complicates assessment and educational planning. Support systems are not generally adequate in under-girding local service delivery programs and transitions between delivery agencies are often problematic.”
An important unmet policy need, the authors point out, is training teachers to deal with autistic children. “Teachers are faced with a huge task. They must be familiar with theory and research concerning the best practices for children with autistic spectrum disorders, including methods of applied behavior analysis, naturalistic learning, assistive technology, socialization, communication, inclusion, adaptation to the environment, language interventions, assessment, and the effective use of data collection systems. The wide range of IQ scores and verbal skills associated with autism spectrum disorders, from profound mental retardation and severe language impairments to superior intelligence, intensifies the need for personnel training.”
To help schools make informed decisions about the best interventions for particular children, the researchers conclude, all the federal agencies involved in autistic spectrum disorders (that would include the Office of Special Education Programs and the Office of Educational Research and Improvement in the U.S. Department of Education, the National Institute of Child Health and Human Development, the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, and the National Institute on Deafness and Other Communication Disorders) need to get together to research the issues related to interventions and treatment and to measure the “active ingredients” of the best programs.
Selected pages from the National Research Council report, “Educating Children with Autisim,” can be downloaded from www.nap.edu . A Government Accountability Office report, “Special Education: Children with Autism,” is available on the GAO website at www.gao.gov/htext/d05220.html.