When Andrew Roth was a toddler, he displayed many of the classic symptoms of autism: He rarely spoke, and he didn’t interact with his parents or others. Often, he appeared to be deaf, but then he would rattle off TV jingles at random times, his mother, Elizabeth Roth, recalls.
After he underwent myriad medical tests and his parents consulted education agencies near their home in Olney, Md., he was diagnosed as developmentally delayed. “All that time, no one made use of the word ‘autism,’ ” Ms. Roth said recently.
Andrew’s experience was not atypical. Until the 1980s, autistic children were typically labeled “developmentally delayed” or “mentally retarded.’' But when Andrew, now 19, entered elementary school in the mid-1980s, educators were just beginning to create special programs for autistic students, and he found his place among the rising number of students with the condition.
In recent years, schools across the United States have faced large increases in the number of students identified as autistic. As those numbers continue to rise, researchers are grappling for answers, while educators pore over their findings for guidance on teaching such students.
U.S. Department of Education statistics show a nearly 120 percent increase in the number of students ages 6 to 21 identified as autistic over a recent four-year period. During the same period, the overall number of students with disabilities rose only 13 percent.
About 15,580 students were identified as autistic in the 1992-93 school year--the first year the Education Department required states to categorize autistic students in their data. By 1996-97, the most recent year for which data are available, states reported a total of 34,101 students identified with autism. And that number, while only a small proportion of the 5.2 million students with disabilities nationwide, appears still to be rising significantly.
Dr. Marie Bristol- Power, a research administrator specializing in autism at the National Institutes of Health in Bethesda, Md., attributes the rise in identified autism cases to three main reasons: better public awareness, more extensive efforts by states to identify youngsters with the condition, and a broader diagnostic definition of autism that was adopted by the American Psychiatric Association in 1994. Much of the increase is also attributable to better identification and screening methods among researchers, diagnosticians, pediatricians, and educators, researchers say.
While the overall incidence of autism still remains “very small,” that makes educating students with autism complex, said Louis Danielson, the director of the Education Department division that oversees autism research.
According to Mr. Danielson, many schools do not have a single autistic student--and when one arrives, they are ill-prepared to create an appropriate education plan. Autistic and other so- called low-incidence students “often pose a challenge, particularly for small school districts,” he said.
In recent years, “we have had a lot more requests for information, as well as a lot more requests for funding for projects on autism,” said Gail Houle, a senior research analyst with the Education Department’s office of special education programs. “Professionals are no doubt responding to the need.”
Mechanic’s Grove Elementary School in Mundelein, Ill., consulted its local educational cooperative when its first student with autism came through the doors three years ago.
“We have found that while we didn’t know, we were able to find out,” said Paul J. Mikulcik, the principal of the suburban Chicago school. Now, several more autistic students attend the 624-student school, and they are being successfully included in regular classrooms.
Two federal agencies--the Centers for Disease Control and Prevention in Atlanta and the NIH--are closely studying autism, which is described as a group of brain disorders that interferes with communication and social skills. The CDC estimates that as many as 285,000 children and young adults could be afflicted with the condition. There are four times as many boys as girls identified with autism.
Researchers caution that while there are many suspected links to the condition, including vaccines and as-yet unidentified toxins, little is known about autism’s causes or even the rates of incidence.
“We really don’t know what the causes of autism are,” said Dr. Coleen Boyle, an epidemiologist and autism researcher at the CDC.
Not only that, “we can’t answer questions of whether it’s increasing over time because we don’t have those numbers, nor historical evidence,” Dr. Boyle added. “It used to be considered a fairly rare condition, difficult to diagnose.”
Autism is generally considered incurable--but with appropriate treatments, children can show great improvement, and in some cases go on to lead relatively normal lives.
The available research gives a wide range of appropriate treatments, however. Responses can range from lifelong vitamin therapy to intensive one-on-one behavior modification and occupational therapy. Sometimes, the anti-depressant medication Prozac is prescribed in a child’s early years.
Each patient has unique characteristics, experts say, and his or her condition can range from near- normal functioning to being completely noncommunicative and severely mentally retarded.
“You can’t do a medical test for autism; you can only do a behavior test and an educational test,” said Martha H. Ziegler, the public-policy director and founder of the Federation for Children with Special Needs, a coalition of parent-resource groups based in Boston. “That’s one reason why there’s so much variation between one kid and another.”
About 80 percent of children show symptoms from birth, Dr. Bristol-Power said. Others appear to develop normally, then regress--and those are mainly the cases that researchers believe may be affected by an environmental factor.
Still, “the name of the diagnosis depends on the professional you see,” Dr. Bristol-Power added. And possible previously unknown environmental factors, such as vaccinations, have recently received publicity.
Researchers are investigating whether a small percentage of children may have had an allergic reaction or susceptibility to MMR shots (for measles, mumps, and rubella) or other vaccines. Some believe that other environmental factors may also be contributing to the rise.
|The following organizations can provide more information on autism:|
|Autism Society of America, 7910 Woodmont Ave., Suite 300, Bethesda, MD 20814-3015, (301) 657-0881, www.autism-society.org/|
|Centers for Disease Control and Prevention, 4770 Buford Highway N.E., Mailstop F-15, Atlanta, GA 30341-3724, (770) 488-7360, www.cdc.gov/nceh/ programs/cddh/dd autism.htm|
|National Alliance for Autism Research, 414 Wall St., Research Park, Princeton, NJ 08540, (609) 430-9160; 888-777-NAAR, E-mail: email@example.com|
|Southern California regional office: 17383 W. Sunset Blvd., Suite 420 Pacific Palisades, CA 90272, (310) 230-3568, www.naar.org|
|National Early Childhood Technical Assistance Center, 137 East Franklin St., Suite 500, Chapel Hill, NC 27514-3628, (919)962- 2001, www.nectas.unc.edu/|
|U.S. Department of Education, Gail Houle, OSEP, 330 C St. S.W., Room 3086, Washington, DC 20202, E-mail: firstname.lastname@example.org|
Figuring out how to educate the diverse range of students with autism has proved to be a challenge for many schools, and parents are not always pleased with the results.
“We’re getting better prepared than we were initially,” said Linda Gruehn, the principal of Bell’s Ferry Elementary School in Marietta, Ga. “As with any situation that is new, it takes time to get the training in place.”
Three years ago, Ms. Gruehn helped set up an autism inclusion program at another elementary school to help better serve the autistic students there.
Myrna Mandlawitz, the government-relations director for the National Association of State Directors of Special Education, said the adequacy of services “ranges widely from school to school.”
Overall, “school districts are paying more attention ... partly because of the push by parents, but also because of the higher incidence,” she added. “Many, many more of these kids are being included in the regular classrooms. ... Finally, people have begun to take a serious look at this.”
In the early grades, inclusion has become the norm for most children. And once they reach high school, they often look to training in vocational fields. Andrew Roth, for instance, is learning computer programming and has worked in an office, his mother said.
Still, many parents agree that much work remains to be done.
“Through elementary school, large numbers of these kids are being serviced pretty well through inclusionary settings,” Ms. Ziegler of the Massachusetts parents’ network said. “Once they hit high school, then we run into big problems.”
Autistic students, she said, usually have a hard time adapting to high school, with its more flexible schedules, larger classes and buildings, and less personal attention to individual students.
Researchers agree that their work should prove helpful to schools. But with so many new findings being churned out, it’s sometimes hard for educators to comb through them and quickly disseminate the information and put it into practice.
Barbara Gantwick, the director of special education services at the New Jersey Department of Education, confirms that it’s been difficult to sort out the fast-growing body of research findings and help districts determine the best educational approaches.
“It’s a burgeoning field,” she said. “Everyone’s trying to take the research and make it into an education practice very quickly.”
And in some cases, as with other students covered by the federal Individuals with Disabilities Education Act, administrators and parents have waged legal battles over the kind and amount of services needed. In one New Jersey case, for instance, a district was required to provide 70 hours a week of therapy as part of a child’s early-intervention services, Ms. Gantwick said.
Meanwhile, the federal Education Department has commissioned a two-year study by the National Academy of Sciences’ committee on educational interventions and autism that will look at current treatments and determine the best practices. The study began in January, and the NIH will bring researchers together for an annual conference in coming weeks.
“The good news is, with early and comprehensive and individualized services, people are finding out that there’s a much more positive prognosis for children with autism than was first thought,” said Phillip S. Strain, a professor of educational psychology at the University of Colorado at Denver and an expert in early- childhood interventions for autism.
“We still need a lot more education,” Ms. Roth, a former board member of the Autism Society of America, added. “A lot of professionals don’t recognize it, and a lot of parents don’t want to accept that their child has autism.”