At a time when the numbers of U.S. schoolchildren diagnosed with disorders related to autism are soaring, young children should be screened for such conditions as routinely as they are for hearing and vision problems, a national panel of experts said in a report issued last week.
If children are diagnosed at a very young age as having a disorder on the autism spectrum—complex developmental disabilities that cause problems with communication and social skills—they have a greater chance of being helped by educational services, says the report by the National Research Council, an arm of the National Academy of Sciences.
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|A full copy of the report, “Educating Children With Autism,” is available from the National Academies.
The report’s authors urged the U.S. Department of Education and the National Institutes of Health to promote routine early testing for the disorder, which can be detected in children as young as 2 years old.
“As soon as children are recognized as having any autistic spectrum disorder, they should receive intensive intervention,” said Catherine Lord, the chairwoman of the committee that wrote the report and a professor of psychiatry at the University of Chicago. “These efforts should be systematically planned, tailored to the needs and strengths of the individual children and their families, and regularly evaluated.”
The report, requested and sponsored by the Education Department, comes amid a surge in the number of cases of autistic spectrum disorders reported nationally. Children with such conditions now constitute one of the fastest-growing categories of students in special education. (“Sharp Rise Seen in Identification of Autistic Pupils” Oct. 20, 1999. )
At the request of the department’s office of special education programs, the NRC formed a committee in 1999 on educational interventions for children with autism, made up of 12 experts in the fields of special education, speech and language pathology, psychiatry, and child neurology. The report results from their examination of the scientific evidence on such interventions.
Twenty years ago, between two and five cases of autistic disorders were reported per 10,000 people nationwide. Now the disorders have been identified as affecting as many as one in 500 people, making it more common than childhood cancer or Down syndrome, the report says. The authors say it is unclear whether the increase is due to a true jump in cases or to a rise in awareness and identification of the disorder.
David L. Holmes, who heads the committee of professional advisers for the Autism Society of America, an advocacy group based in Bethesda, Md., agreed with the report’s push for early intervention as the key to educating students with autistic spectrum disorders.
“The sooner that we identify autism, the better it is for the child,” said Mr. Holmes, the president of Eden, a service agency for people with autism in Princeton, N.J. “It’s important to establish good adaptive skills in children with autism before the autism takes over.”
Services Seen as Lagging
Disorders on the autistic spectrum include autism, Asperger’s syndrome, “pervasive developmental disorder not otherwise specified,” and childhood disintegrative disorder. The disorders vary in the severity of symptoms, when the onset of symptoms occurs, and whether they exist along with other disabilities such as mental retardation or severe language impairment.
Because education at school and home is the primary form of treatment for autistic disorders, more should be done to make the best education services available to all children with the diagnosis, the report says. But services offered for students with some form of autism vary greatly from state to state and district to district.
Schools should provide at least 25 hours a week of services year round for children diagnosed with a disorder on the autistic spectrum, the NRC panelists argue. The services should be based on the latest research about how to combat the disorder and on the individual needs and strengths of the children and their families, they say.
Other experts in the field have said 40 hours a week of services is ideal if the child can tolerate it. Still, Mr. Holmes said 25 hours would be an improvement over the current situation in schools, which is inconsistent.
He said some local agencies provide children with autism-related disorders only two hours a week of services. When children are eligible for more services, they have missed the window for early intervention, he said. “It’s like getting a prescription for 100 milligrams of a drug three times a day, and only getting one dose of 25 milligrams,” Mr. Holmes said. “It’s a ridiculous situation.”
Although studies recommend comprehensive approaches to teaching such students, more research needs to be done to identify which methods are most useful, the report suggests.
Educational services for autistic children should teach students about how to conduct conversations, communicate with body language, and curb aggressive behavior, the report adds.
Mr. Holmes said it is critical for students to learn from a young age to control aggression.
“When the child gets older, the child gets bigger,” Mr. Holmes noted. “What was just a tantrum could then become distracting and harmful to family and friends.”
Because reinforcement at home of what a child learns in school improves students’ chances of success, the report recommends that educators give parents of students with autistic disorders opportunities to learn techniques to help them teach their children skills and coping strategies.
More coordination of education programs for students with autistic spectrum disorders should occur at all levels of government so that the programs run more smoothly and that new educational strategies are devised for the first decade of children’s lives, the report says.
Further, the report recommends that federal agencies involved in autism initiatives form a task force to evaluate intervention and treatment approaches.
It also calls for state officials to encourage service providers to coordinate their work and track their progress. And school districts and agencies that serve toddlers should designate independent “ombudsmen” who are knowledgeable about autism to help support families through the process of obtaining special education for their children.
“Sometimes, by the time a parent is able to access services, it is past those crucial early years,” Mr. Holmes said. “There is a narrow window of opportunity. These families can’t be shut out because of a lack of coordination of the agencies. They shouldn’t have to fight for this stuff.”
The report also suggests that both state and federal policymakers develop strategies to help school districts and parents pay for intervention programs.
To improve professional development for teachers, the report calls on state and federal agencies to set aside extra money over the next five years to train those who work with children with autistic spectrum disorders and their families.
A version of this article appeared in the June 20, 2001 edition of Education Week as Pressing Need Seen To Catch Autism Earlier