WASHINGTON -- The National Institutes of Health and the U.S. Department of Education should promote routine early screenings of children for autistic spectrum disorders, much like they are promoted for vision and hearing problems, says a new report from the National Research Council of the National Academies. Early diagnosis is important because prompt educational intervention is the key to greater progress in children's mastery of fundamental communication, social, and cognitive skills.
"As soon as children are recognized as having any autistic spectrum disorder, they should receive intensive intervention," said Catherine Lord, chair of the committee that wrote the report, and professor of psychiatry, University of Chicago. "These efforts should be systematically planned, tailored to the needs and strengths of individual children and their families, and regularly evaluated."
Experienced professionals can reliably diagnose 2-year-olds with autism, which is best characterized as a spectrum of complex developmental disorders that result in problems communicating or interacting with others. The disorders vary, however, with respect to when symptoms begin to appear in children, the severity of symptoms, and the presence of other disabilities, such as mental retardation or severe language impairment. The committee did not examine the causes of autism, but pointed out that the reported incidence has increased considerably over the past 20 years. Nationally, autistic spectrum disorders may affect as many as one in 500 people, making the conditions more common than childhood cancer or Down syndrome.
Education at school, home, and in community settings is the primary treatment for autistic spectrum disorders, which include autism; "pervasive developmental disorder-not otherwise specified"; Asperger's disorder; and childhood disintegrative disorder. But what now exists across the country is a mixed bag of intervention measures, the report says. Government coordination is needed at all levels to successfully implement existing policies and generate more useful education strategies for children with such disorders within their first decade of life. Although significant scientific evidence confirms the value of many specific therapeutic techniques and of comprehensive treatment approaches, more rigorous studies also are needed to identify which methods are most valuable for various groups of children. Scientists should explore possible links between particular techniques, child and family characteristics, and the outcomes of treatment.
The report offers a comprehensive assessment of the science base regarding educational interventions for young children with these disorders. At a minimum, services -- which are required by the federal Individuals with Disabilities Education Act -- should be provided for 25 hours every week year-round, it says. The individual needs of children and their families should factor into decisions about how that time is spent. Moreover, parental involvement should be encouraged and supported. Educators should present parents with useful information as well as opportunities to learn techniques that would help them teach their own children new skills and coping strategies.
Given the incidence of autistic spectrum disorders in young children and the often considerable effort required to help them, policy-makers, educators, and advocates at all levels should come together to ensure that educational services not only meet certain minimum standards, but also result in measurable progress toward meaningful goals, the committee added. As a start, federal agencies involved in autism initiatives should form a joint task force to scientifically evaluate a variety of intervention and treatment approaches. At the state level, authorities should encourage service providers to coordinate their work, as well as monitor their progress. Additionally, school districts and agencies that serve toddlers should designate independent ombudsmen who are knowledgeable about autism and would support families as they went through the process of obtaining special education for their children. Both state and federal policy-makers should develop coordinated and systematic strategies to help local school districts and parents pay for intervention programs, which can be costly.
Parents and educators typically face immense and unique challenges in socializing and instructing children with autistic spectrum disorders. To improve professional-development opportunities for teachers in this field, relevant state and federal agencies should set aside extra funds over the next five years to train those who work with or are accountable to such children and their families, the report says. The proposed funding measures should be part of an overarching effort to coordinate services under the current umbrella of special education.
The study was sponsored by the U.S. Department of Education. The National Research Council is the principal operating arm of the National Academy of Sciences and the National Academy of Engineering. It is a private, nonprofit institution that provides independent advice on science and technology issues under a congressional charter. A committee roster follows.
Read the full text of Educating Children with Autism for free on the Web, as well as more that 1,800 other publications from the National Academies. Printed copies are available for purchase from the National Academy Press Web site or by calling (202) 334-3313 or 1-800-624-6242. Reporters may obtain a pre-publication copy from the Office of News and Public Information at the letterhead address (contacts listed above).
NATIONAL RESEARCH COUNCIL
Division of Behavioral and Social Sciences and Education Board on Behavioral, Cognitive, and Sensory Sciences and Education
Committee on Educational Interventions for Children With Autism
Catherine Lord (chair)
Department of Psychiatry
University of Chicago
Network of Collaborative Programs of Excellence in Autism
National Institutes of Health
Joanne M. Cafiero
Augmentative Communications Specialist
Department of Special Education
Graduate School of Education
John Hopkins University
Pauline A. Filipek
Associate Professor in Residence
Departments of Pediatrics and Neurology
University of California
James J. Gallagher
School of Education
University of North Carolina
Sandra L. Harris
Graduate School of Applied and Professional Psychology
Alan M. Leslie
Department of Psychology and Center for Cognitive Science
Gail G. McGee
Department of Psychiatry and Behavioral Sciences
School of Medicine
Samuel L. Odom
Otting Professor of Special Education
Wendell Wright School of Education
Sally J. Rogers
Department of Psychiatry
University of Colorado Health Sciences Center
Fred R. Volkmar
Professor of Child Psychiatry
Child Study Center
School of Medicine
New Haven, Conn.
Amy M. Wetherby
Department of Communication Disorders
Florida State University
RESEARCH COUNCIL STAFF
James P. McGee